Brainstorm Book by vaosieuthi

VIEWS: 291 PAGES: 98

									Brainstorm
Chapter 1: You Won‟t Die ....................................................................................................... 2 Chapter 2: How did I get here? ............................................................................................... 8 Chapter 3: Nick‟s Tale ........................................................................................................... 18 Chapter 4: “The Call” ............................................................................................................ 21 Chapter 5: From Irrationality to Rationality ......................................................................... 24 Chapter 6: Battling The Nighttime Demons ......................................................................... 27 Chapter 7: The Big Decision ................................................................................................. 30 Chapter 8: Morning of Brain Surgery ................................................................................... 35 Chapter 9: Brain Surgery ....................................................................................................... 38 Chapter 9: Recovery - The Hospital as Home ...................................................................... 41 Chapter 10: Constructing a Support System in Berlin ........................................................ 46 Chapter 11: Like 2 Peas in a Pod: An Exegesis on Brain Tumors ...................................... 50 Chapter 12: Where Am I? ...................................................................................................... 53 Chapter 13: A Mother‟s Trials and Tribulations .................................................................. 56 Chapter 14: From Inpatient to Outpatient, New York Style................................................ 63 Chapter 15: Chemotherapy Cocktails ................................................................................... 71 Chapter 16: Going through chemotherapy ........................................................................... 74 Chapter 17: Radio-Therapy ................................................................................................... 81 Chapter 18: Zapped! Dealing with radiation ........................................................................ 84 Chapter 19: The Verdict: Am I finished? ............................................................................. 92 Chapter 20: My Second Chance At Life ............................................................................... 95

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Chapter 1: You Won‟t Die
Emily Kuwahara, May 1999 to June 2000 "If I die, will you have my children?" The question pounds through your struggling body into me. The air pulses with your brain activity, your desperate check on cognition, memory, logic and life. I see every cell squeezing out its juices, pumping ceaselessly. Your hair's matted with residual blood and the overgrown scruff makes you look like a goat. I want to lift you up the way angels carry their children to the place of healing, where sculpted fountains sprinkle everlasting pureness. The fountains are of naked cupids carved of cold stone. Cupid has perfect immovable curls and unsettling blank spheres instead of eyes. He can't see your demons or the visions that haunt you at night. "You're not going to die." A yes would have meant what? And no? Can't these things be kissed away? Kisses like roses, like the crackling wood in fireplaces. Your kisses melt into me like cream twirling into coffee. I wish our skin could twist around and around, leaving only an unbreakable cord where our bodies lay. Closer, more, more. And when you fill me up inside, I want to pull you straight through me, our bodies becoming chocolate and vanilla ice cream, melting, trickling into each other, sticky and sugary. But instead I stare at your depleted body tucked under the hospital sheets. I see you pushing the wall of disease away from you. And I hold your hand. I wish that my body could join your struggle or stop the ceaseless ticking of your brain and make your life like honey and lemon tea. I wish that the world would start spinning again, breaking the bubble that holds us here. Your eyes search backward trying to remember and then forget the visions that torment you when the lights go off . "God was talking to me. About the meaning of life." You don't elaborate as you hold your demons at bay. I don't ask. I‟m terrified of letting them back in by knocking on the wrong door. I wish these things had bold labels so I‟d know what‟s what. You go on and tell me about being moved to another building of the hospital the night before and say that you don't sleep here. I hold your hand and stroke your face. Did they really move you? Another questionable door. I wish the words that cooked up reassurance would fall from the ceiling into the space between your perplexed eyes and mine. Will I know you when this part ends? Did the tumor mold your brain throughout all these years and will it stay warped like old rubber when it's gone? To what end? They say that the tumor probably affected your personality, that it made you less aggressive in pursuing treatment. They say it changed your perception of temperature, of time. They say things that twist the logic of linear life, bending around time and brain spaces to hypothesize answers. I don‟t know what to believe and what to defy. Are you still Tom? I‟m feeling watched again. The walls of the hospital waiting room are watching us, monitoring our volume level, monitoring the boisterous Americans who rapidly takeover the room, eating away at space like an amoeba. There are many of us sprawled throughout the glass paned room, waiting to see you. Two at a time. Fifteen minutes a piece. I wait for your dad to tell me when my appointed time has come or if you‟ve asked to see me. I sit and link yards and yards of yarn into an afghan. Your dad and sister take long speed-walks around the hospital, around and around like wind-up toys. They ask me to join them, but I'm afraid that if I walk, I'll fall out. Keeping myself inside this body, staying inside the 5 feet of solid mass seems so difficult. I would just slither out and slump, a small mass of white spirit. And my body would keep power walking, going somewhere, trying to find that garden of cupids that will make you better. And I'd watch it go. But I'd know what it didn't know. They didn't make the garden, they ran out of money, or energy, or sweat. Your life remains uncertain in the jumble of probability. So I sit and crochet some more and let my hands work until the lactic acid make rocks in my palm. And they keep going, so I watch yarn grow. Your mother also knits, putting together red and white yards and yards. She keeps herself cheerful and busy and I am grateful for an angel. Your friends from the Center keep us company with their stories and their energy keeps us sane and healthy. We all wait. Teratoma: A tumor, sometimes found in newborn children, which is made up of a heterogeneous mixture of tissues, such as bone, cartilage and muscle. Germinoma: A type of germ cell tumor consisting of large round cells with vesicular nuclei usually found in the ovary, undescended testis, anterior mediastinum or pineal gland. We huddle around the paperwork, trying to absorb all the medical details that each one provides. Your parents have massive packets of information about pineal region tumors and teratomas filled with diagrams and 2/98

explanations. I try to memorize all that I can, but I don't care. I just want you to be better. I remember the way you finished my sentence in the ICU and swallow more big words. Read. The statistics are apparently very good, the tumor was apparently very large. The treatments are apparently surgery and chemotherapy and/or radiation. Nick comes running over with his first unofficial English translation of the German surgery report. The words permeate through me and the meaning of all those words about that thing that was in your head just sit in my stomach until they pour out as tears. I ask your mom if she thinks all this treatment will shorten your lifespan. She tells me what I don‟t want to hear and I try to swallow again but the knot in my throat has gotten too big. All I know now is that when I kiss you, you try to smile and maybe you're getting better. Your sister and I sleep in the hospital guest hotel on the corner of the hospital block. We get up, eat breakfast and march over to visit you. The humidity pulls my knees to the ground, but the thought of you drives me forward. To see you- this is my life here. Everyday more color enters into your cheeks and more life is revived. Your eyes don‟t resemble marbles in cheap mannequins anymore. Tom shines through them again. I love you Tom. I love your positive outlook despite your fear, your smile, your laughs and your jokes and every part of you that is working so hard to recover and live. What goes through your head between the tubes? For your sake I wish I believed in god so that I could tell you that I pray for you or that god can't do this. But obviously he can and I just don't think he cares. So I pray to you for you to give yourself strength. I love these precious moments when I can sit here and talk to you. You sleep most of the day and everyone wants to see you. Doctors are constantly in and out, checking your vision, your motion range. These precious moments feel few and far in between, although I know that I get to see you once every two hours or so in fifteen minute slots each day. I just want to spoil you rotten although I know that when you‟re all better I‟d have to face the consequences. You lean over and tell me naughty nothings and then ask for another kumquat. I just want to crawl into bed with you and watch you sleep, knowing that your body is healing inside, waking up slightly better than the day before with your kisses slightly greedier. I‟d be scared of getting all your tubes and wires tangled up though. There are so many of them beeping and pumping and glowing. "Can I have another cherry?" I wonder if your stomach has an end, but I know you‟re working hard to regain the 20 pounds or more that you‟ve lost. I can‟t help but laugh when you crane your neck over. "When do I get my conjugal visit?" “When you‟re better.” You ask for another leg massage so I rub your skinny calves as you sigh and close your eyes. Whee! You're walking today! The importance of the occasion is glossed over by your appetite which keeps growing exponentially. You look like royalty in summer pajamas as you stroll around the hospital corridors, your mother, your hostmother and myself carrying your cherry pits, a bowl of fruit and kumquats, tending to your every want. Our majesty's stroll elicits laughs from your onlookers, the faithful following of family and friends. You seem oblivious to our amusement, intent on the walk and the food. I'm so proud of you. One week and you're walking. Whee! When the nurses enter your room to wash you for the night, I wave my last good bye and leave. I would rather be your 24 hour nurse than go back to tend to some last few things from the school year. The nurses say I can stay later, and you ask me to come back when they finish. But I refuse. I want to believe that this isn‟t goodbye. I want to leave this slightly unfinished. And I would see you soon. I hope. When the plane takes off, that moment when the world‟s tiny lights are stuck at a silly 30 degrees, when life becomes clearer because for those moments I'm not one of them, when the growling gravel becomes silent as the wheel leaves the ground, I think of you. I think of you on top of me, exhausted from making love, your head pressing down on my chest, breathing hard but softly. I lean my head back on the pillow and let you kiss my neck, my bare breasts and inside I can laugh at our demons. I think of you so small in the hospital bed asking for your children. I still don't know the answer. I try not to think of it. I try to believe the words I gave you, you're not going to die. You're in the hospital again. Emergency surgery for hydrocephalus. Your brain is about to explode and so they're sticking tubes in there for good. Your mother is enraged that the German doctors got it so wrong. They didn't get all of the tumor, but they said they did. And there is was again, grown and floating in the center of your brain, 3/98

stimulated to aggressive, offensive combat only a week after you flew back to New York. I wish I could be there, on the other side of the country, when you wake up…If you wake up. I had a dream. Your voice came from a big crystal box. The box playfully bounced around me, flying lightly, carried by the light breeze that teased my hair. Your gurgly laugh made bubbles and they poured out the sides, surrounding me in delicate tickles of love. But somehow I knew that it was only your spirit that was dancing with me. I woke up shaking. I rolled over and my cheek hit a patch of cold tears on the pillow. It's too hard being apart from you. I have dreams of crystal boxes, of burning girls, of shadowed hospital corridors. You're smiling your new smile again. It says, "Will you come play with me? Here's some love for you." I'm finally here visiting and the edges of your smile soften in your steroid mooncheeks. I almost don't recognize you, you were so tiny when I last left you three months ago. I secretly want to call you my Michelin man, but I decide against it. The disease has a blue presence in the house, lighting up all the worry signs and the clock. Time for an injection. Time for chemotherapy. Time to wash your hands, time to drink fluids, time to exercise, time to rest. Time to enjoy life. I look at your determined back as you get juice from the pantry refrigerator. Determined to live. You don't talk about it, but I'm scared and I wonder if your positive enthusiasm ever gets dark. I hope the light in the refrigerator never goes off. I go to chemotherapy with you, traveling through the city on the subway, where we become a lavender bubble inside the dingy yellow underground. Only the whirl of the IV pump keeps the calm beat of time and healing. You lie sleeping, your lips joined in a perfect ripple. There is hope within these walls, in the mechanical whirl and a rebounding energy in the body curled up, willingly accepting the poison for a greater life. I want to sleep. But I keep the watch, keep you drinking fluids and keep the score on your fluid output. Afterward, we go home, curl up and take a nap. Sometimes, we "nap." Reality has shifted once again. I don't know how you'll be or how I'll feel when reality clicks over one more notch. It's like those souvenir cameras they sell with little pictures of each part of the National Park. Click. Waterfall. Click. Mountains. Click. Rolling meadows. Click. Deer in the headlights. I'm not scared anymore, but click click, our lives change so fast. My own life thunders ahead at college‟s electrifying pace as I return for my sophomore year. I'm doing my late night work again, typing away at the high-tech savior of the modern age. Then you hit me, a wave of panic. Are you dreaming in your sleep? Are you ok? Am I just being silly in believing that our love is so strong it has become telepathic over these long miles? Yes, outlandishly silly, but I make a mental note to call first thing in the morning. I know that you'll answer the phone and tell me you're getting better and that you love me. I know that you're going to tell me I'm silly for worrying. But I remember those days so vividly it frightens me to leave you for a moment- the day your mother called about Germany and the day I called to find that you were in the ER in New York. I had just talked to you on a Sunday after several weeks... and then that Tuesday I heard that answering machine message echoing as I replayed it and replayed it, "Intensive Care in Berlin..." I couldn't get over those words. Pneumonia? Car accident? I hoped, but somehow I knew that for once, thinking negatively wouldn't make an ass out of me when I found out. I left the room and wandered around the roads through campus, picking the wild flowers that grew in the divides. I kicked the grass but they didn't break, just bent and so I picked apart the flowers. All my limbs seemed extraneous. The air was too much to handle. It challenged me too much. The air, the fucking air. Later that night, somehow your mother and I got in touch over the phone. The doctors don't know what it is yet, it's either an aneurysm or a tumor. He's in intensive case in the event that it is an aneurysm and it bursts inside his head. Such a thing would probably be fatal. They don't know yet. Stay calm. Breathe. I paced. I cried. I flung my fists at nothing. So far away. You're so far. Bring him home. Please just bring him home. The next day doctors diagnosed a brain tumor. Later that week your family decided on surgery in Berlin. You were too weak to be moved. Damnit. After the big decision, I heard your voice over the phone, trying to fill up the receiver with good ol‟ Tom. You asked for me . This wasn‟t the way I ever envisioned I‟d get you back from our breakup. I started my crusade for incompletes from my professors, plane tickets, and my own family's approval. They didn't know that you existed, but they were here for my brother's college graduation across the bay. When my brother graduated, I told them of a sick boyfriend in Germany with a brain tumor for whom I had bought plane tickets to leave for the next morning. I had never been to Europe and I didn't speak German. I 4/98

wouldn't finish my freshman year. But what could they do? You could be dead by the time I got there. They drove me home to my campus that night. I called your old roommates for a ride to the airport. I called the Center in Berlin frantically to give my flight information to someone. It was a German holiday and the Center was closed. I would get there in the middle of your brain surgery. I left my information with your mother and emailed a mutual friend at the Center, hoped that someone would find me in Berlin and packed. Bayle came to watch me pack, not knowing what else to do. My roommates watched in sympathy and disbelief. I double checked my passport and turned my mind off. The next thing I remember is standing on the street corner, waiting for Jon. An acquaintance walked by and asked me where I was going. "To Germany. I've gotta go." He gave me the look of confusion that I had seen often in the past few days. "Yah, my boyfriend has a brain tumor." The look. Jon pulled up so I climbed in. He gave me a pack of letters from your friends here to give to you and dropped me off at SFO. My dad met me at the airport to see me off. I don't remember what I did on the plane flight. I think I cried. Your cheerful voice reports on your day. I wonder at your strength through the harsh chemotherapy sessions. Then you tell me about Kalla and ask that I go see her in the hospital. Another 20 year old, another brain tumor. This time it‟s worse, you tell me. It‟s attached to the pituitary gland. But I can't. I can't do it again. I remember walking into the blue ward an hour after your surgery, where the nurse with the flowing brown hair in the bright blue scrubs told me "liebeling? no tears, no tears." So I wiped them all off and put on a big smile to go see you. You asked me how my brother's graduation was. I said good. How are you you ask. Fine, I just want you to -get better, you finished the sentence. Then I brushed my fingers on your lips and you took them into your mouth. It was so hard not to cry. So after I left, I bawled in the lobby. I cried because you were alive, because I could see you fighting, because you were so small but so big. Who do I thank, who do I pray to? You asked to see me again. I couldn't even remember how to get there so your dad walked me up. So I wiped off my tears and went to kiss you lightly. Looking at me hurt your eyes. Your words were murmured, tangled up on your tongue. And I knew what it meant to be here, what it meant to you, to your family, to me. And yet, I know that I can't go see Kalla. I just can't. I lost it. I lost my shit. I know what cigarettes and razor blades can do. I know the adrenaline rush of the blade, I know the calming wave of a nicotine buzz. I understand the pit in my stomach that grows wider and wider as I chain smoke more and more and more and cut deeper and deeper. I carve a happy face and it bleeds itself a smile. I feel my limbs, dangling next to me, filled with hysteria. I‟m scared of what I can do. I watch the choreography of life move on without me and let the couch swallow me up. It‟s all just fucked anyway. I have the dream of the burning girl again. She's chained to a tree, silently screaming, mouthing words that no one can hear. There's a man who tries to lip read, but she's burning too violently and the flames block his view. Her skin is flaking and charring, peeling off into the flames. But the she never dies. She just screams, silently, and I don't know what she's saying. If I left you now, you'd understand wouldn't you? You've made it through the worst. I mean you're Jewish and I'm something and you'd probably want a Jewish wife anyway right? So what's the point? We'd still be friends. I can't leave you forever. I can't not know how you're doing, who you're seeing, what you're doing. So we'd be friends, wouldn't we? You'd forgive me wouldn't you? You're strong and optimistic. But I mean, I just don't know if tomorrow you'll be here and I don't know that I can live with that all the time. What if we get married and have kids and something happens and it's just me and the kids? I don't want that. I don't want this burden. What, I just turned 19 a while ago. Can you blame me? Besides, we'll probably break up eventually. We're so young. Isn't it better now than later? I knew the commitment that I made to your recovery when I stepped onto the plane to go to Germany. But that shouldn't bind me to you now should it? After everything, I know I'm not supposed to say this. Leaving-leaving thoughts are streaming through my mind. I hate these awful head conversations. It‟s scary in there. But I can‟t do this. But what if something happened to you? What if I never knew if you were sick or healthy or dead? I can‟t leave you like that. I wish I could, but I can‟t. So I never do. There's a smile on my face. It's for you. It's time to play. You're here visiting at school, and all the purple and blue visions of my life come swirling back inside of me. You‟ve missed Valentine‟s Day by two days, but we‟ve been apart for so long that I don‟t care. All I know is reduced to the three magic words and I can feel your strength in the lift along the soles of my feet. I love you. Since the last time I saw you, you‟ve finished radiation 5/98

and turned 22. You're better. You're walking. You're staying out late at night and coming home tasting of beer and crude jokes. You're talking on the phone, dominating our room with your constant pacing, making whizzing plans. I love you. I had forgotten how bright your eyes could be. Are those rosy cheeks I see? And little sprouts of hair? You reach the couch, turn around and pace. You reach the bed, turn around and this time I catch you passing by and you look down with your new smile. You're here, you're really here. I run my fingers along the sprouts on your shiny head. Progress, a mark of time, a mark of a return to something, the something that doesn't need daily hospital and pharmacy runs. You're walking and talking and eating and smiling and moving and hugging and kissing and singing. You've reached independence again. I hold you tight, inhaling you and then let you go to your pacing. I try to do some work while you talk, but all I can think is You're here, you're really here. Sometimes, there's only one way to say it. Yay. Magnetic Resonance Imaging. A scanning device that uses a magnetic field, radio waves and a computer. Signals emitted by normal and diseased tissue during the scan are assembled into an image. I hug Miles and try to sleep. Miles, named for all the thousands of miles we've spent apart. Sometimes I can believe that Miles is hugging me back and maybe that's what you were thinking when you got me the teddy bear. So I hold him closer and his little body twists into the cave of mine's curl. I'm waiting again. I'm waiting for your phone call. In less than 24 hours, the phone will ring, it will be you and you will tell me that the MRI confirms your return to school. You will call me and tell me that you love me and that you miss me and in four weeks you will be here with me again. It's almost a year since you left. A year ago today, you were revving up for a quarter abroad, preparing to leave me and trying to think of ways to let me down gently. Several weeks later I came home from work and got the message. And I wonder if I'll come home from work tomorrow and get another one. What will you say and then, what will it mean? Yay. The weight of the year clears my head and I sob. The spasms in my stomach tumble out. All I want to do is celebrate life with you. We've been apart for so long. And every step of the way I haven't been there for the celebrations. When do I get to see you? When do I get to run away from everything and breathe you into me? I want to be young and reckless. I want to roll around in bed and not wait for the magic rings of the phone. I want to see you smile. I want to hear you laugh. I want to dance with you again and hear our happiness in the beat. Why aren't you here? Why aren't I there? I can count the days on one hand. The length of the year is reduced to Thursday, Friday, Saturday. Thursday, Friday, Saturday. 3 more days, no two and a half and you're here. I pace, knowing that it just makes the clock tick slower. Every muscle ticks with anticipation. Saturday. Finally a real date to pinpoint. A new quarter of school starts for you. Saturday. You'll be living a block down from my house. We can go out to dinner and a movie. We can do things together. Things. Anything. I can even walk down the street and see you on a whim. Against a year apart, marked by three short visits, the prospect of you everyday makes me delirious and a little worried. My heart‟s in my stomach and my stomach‟s in my mouth and all the butterflies are rioting. Saturday. It's Thursday, right? Two and a half more days of waiting. We‟ve been apart for so long. I wonder how we made it. You arrived at my door earlier this evening, prepared to join the crazy torrential student life. I put my head on your chest and listen to the lullaby of your heart. A year has passed since you left. What are your fears? Does the light in the refrigerator go off? I hear the fears in my sleep. In every beauty I see, the chest crushing pain of life's ephemeral passing races through. I know you're uncertain. But I wonder if you know and if you'll tell me. I wonder if the stresses and concerns of school will seem silly now, if your friends have grown up the way you have and if we can survive each other after being apart for so long. I want everything to be perfect. Doesn‟t everyone? Morning comes and I miss the feel of your thigh against my own. I tap your imaginary nose and sigh my morning sigh. Up, up, the blue sky beckons. Groan. Five more minutes and I‟ll get up. A slight scent you‟ve left behind catches my nose and I let my spine arch just a little. Roll. The comforter slips off the bed into a 6/98

comfortable crumbled landing pad on the floor. I miss you already, but today, I can see you. And tomorrow and the next. I smile and curl up. My arm sweeps the bed in an effort to find Miles. I realize that he is on the floor and debate foggily whether to get up and find him or to hope that his teddy bear education will forgive my abandonment. The phone rings. I‟m up I‟m up. Ugh. I hate the mornings. You suddenly seem very old. There's a new wisdom being grinded out through your daily routines. A greater energy pushes its way through everything you do. Your love for me has changed as well, to a steady beat of an intensity that I almost can‟t receive inside me. I hear you tell me that life is short, the days are beautiful, that you don't know when you're going to go so you have to make the best of it. I hear you whisper these truths that I don't know yet, that I think I'm too young to understand. But I feel them inside me, fizzing my teenage sensibilities away. My mind whirls and my heart cringes. I resist. You thank me every night for being wonderful and every time, there's a part of me that resents you. I never wanted to be so old at 19. To live you acknowledge death. I can‟t see past it to who you will become. Will I lose you after all? It‟s springtime again in California. The grass becomes lazy, inviting all to slumber awhile in its care. The clouds become the ice cream of childhood memories and the continents drift by. The night air, slowly warming up for the summer, brings a restlessness that drives us outdoors. We rollerblade across campus, and suddenly school becomes a beautiful haven. There are no more demons to fight, no questions to fear except my own wobbly skates. It‟s not over. It‟s never over. But I love you. And it‟ll be ok. I grasp your hand as you guide me through the bumps and the hills, teaching me how to rollerblade. You skate ahead, turning and weaving in graceful slides. Thank you- everyone, everything. Look at you. I could watch you skate forever just to marvel that you're alive on your two gliding feet. Whrrlll. Whrrrlll. I love you. My love is nestled in me, curled up snuggly in its corner. You wait for me further up so I skate, grasp your hand and smile.

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Chapter 2: How did I get here?
“Hallo, Herr Jacobs. Schlafen Sie noch? Wissen Sie wo Sie sind?” My eyes stir. I wake. Where am I? A hospital? I think I‟m in a hospital bed. A nurse is asking me questions in German. What is she saying? I don‟t get it… “Koennen Sie mich horen?” She is asking if I hear her… Huh? How did I get here? I remember that I‟ve been very sick, getting sicker, and no one knows what‟s wrong with me. How did I get here? Where is “here”? What are they going to do to me? What have they already done? Who can I trust, when I can‟t even trust myself to think straight anymore? I start to remember more. I had been having terrible headaches for several days in a row, and hadn‟t left the apartment. Somebody, it must have been that Elizabeth Pruessor, the lady whose room I am staying in, sent me to another doctor… I think his name was… Wunderlich, that‟s it. Wunderlich, which means “wonderful” – a good omen. Even though I thought that I had gotten through the worst of it, and that I was getting better, I went to see Wunderlich, if only to get Elizabeth and my parents and all the others to stop nagging me. I remember stepping into his office, meeting his assistant, then him, and then… then… I don‟t know. I think I went alone, at least I don‟t remember anyone being with me. For that matter, actually, I don‟t remember much about that trip. I don‟t even know how I got there, but by the time I finally arrived at the doctor‟s office, my headaches were so bad, I could not speak or sit still. Thinking of any kind had all but ceased, and I waited in my chair for another incorrect diagnosis and another puzzled face. I think I remember him looking at me, talking to his assistant, and getting into a cab with me. Then a lot of fuzzy memories that may or may not have occurred. Machines and doctors, scary rooms and scary tests. How did I get here? What day is it? “Was ist passiert?” I ask. What has happened? “Sie sind sehr krank. Vielleicht sollen die doktoren Sie erklaeren.” You are very sick. The doctors will explain. I try to sit up, and my head explodes. I lie down again immediately. I am more tired than I‟ve ever been; just trying to sit up makes my head swim. For a moment, I am back in oblivion. Shapes and ideas swirl around my sick brain. A whirlwind of fantastic delusions that is part reality and part fantasy. I see forests and children and happy faces. The children wave flags and run in a parade in a field. Up and down they go, high and low, until they all blend together into one big, shimmering tree, their banners shuffling through the leaves. None of them seem to notice me. The dream slowly fades into blackness. When I awake again, there is a different nurse by my bed. “Where am I?” I stammer quietly in English. “In the hospital. Charite hospital.” “What am I doing here?” “You are very sick. You have almost died. You were very lucky to have been brought here in time.” It is then that I notice the tubes coming out of the back of my head. Not really the back, more like the top, and then coming down the back of my head, going off to the side, and connecting to a beaker, which is collecting a purple/pink substance. There is a slow drip to it, and as I trace the tubes, watch the beaker fill up and listen to the sound it makes as it fills, things become clearer. A brain tumor. It must be. I think Dr Wunderlich told me his diagnosis in the taxi, but I think I had somehow known that for a few days, and had been so terrified, I couldn‟t admit it. It must be a brain tumor, that‟s the only explanation. What are these tubes? Have I been operated on already? Probably. I am drained by all this thinking and sink into the bed. My mind, operating on autopilot, shifts to the days proceeding my visit to Dr Wunderlich. I realize now that I was not getting better. I would not be here in the hospital if I was. I had been lying to myself. In fact I‟d been getting worse. Now here I am tied to a hospital bed by cords coming out of my head. Nurses tell me that I‟m “very sick”. The funny thing is that a part of me doesn‟t believe this is really happening. Everything is incredibly strange. Who are these men and women claiming to be krankenschwesters (nurses)? How much time has passed since the last thing I remember? A man comes in, dressed differently from the nurses. He must be the doctor. “Hallo Herr Jakobs. Is English better, or can you understand German?” He is speaking English. That is a blessing. I am too tired and confused, not to mention in too much pain, to speak German. I tell him that I prefer English, but I understand German. “Ok Mr Jakobs. You are very sick, Mr Jakobs. You have a tumor in your brain…”

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I go numb hearing it from the doctor, and even more numb as he holds up the picture of my brain. He points to an enormous lit up ball right in the middle of my head and repeatedly uses the word “massive”. He continues telling me that I was very lucky that it was found when it was, that I was in very serious condition when I got to the hospital, and they had to go into the operating room right away. They performed an emergency surgery to relieve the pressure in my head caused by the build up of brain fluid due to the tumor‟s blocking the drainage canal. This accounts for the tubes coming out of my skull, but the tumor is still there. I do not understand what he is saying. I am repeating the word “tumor” to myself over and over again, and staring at the picture in his hands. He does not need to point out the brain tumor, it is so obvious. There, buried in the deepest part of the brain, not to the front or back, or either side, but squarely in the middle of the skull, is a massive, ugly, bright lump that stands out like someone wearing neon at a funeral. Even on the MRI, the huge mass eating away at my brain is a sickly color, bright and menacing. Instinctively, I know that this is not a color found on an MRI of a healthy brain- it is too dense to be healthy tissue. The picture shows something terribly wrong. There are tentacles and bubbles coming off of the tumor that make it look even more evil. It is not content to just reside in my head; it is trying to bubble and eat its way through the rest of my brain. The tumor seems to be looking at me, scornfully. I can almost see a mouth in it, telling me that it is going to kill me, and that there is not a thing I can do about it. I want to ask the doctor if it‟s operable, if there is hope, but I cannot speak. I am stunned. Deep inside, I know I am not ready for the answer. In all likelihood, it is inoperable. This tumor is buried in the deepest part of my brain! It looks inoperable. The nightmare is finally complete … I‟m going to die. I lie stunned as the doctor finishes telling me about my condition, and leaves. I am motionless, lost in a world of thoughts that swirl around my tumor-laden brain. My thoughts seem to come and go too fast, and I start to cry. A second after that, I lose it. Something inside of me snaps, and I start to fall apart. I have lost all hope of ever leaving the hospital or even so much as my room. I will never see my family or friends again. “I‟m going to die here” I think. “I‟m going to die here”. This thought pulsating from my brain as I think about all the ways in which it is not fair, not fair God, that I have a massive brain tumor, and that my life will end in a foreign country. What was the point of my life, if I die now? Why go through all of this? I think about how 3 months ago I was a perfectly healthy 21 year old, captain of the Stanford ski-team, anticipating a terrific career in computer science. I used to be an energetic person more likely to be found asleep in the quad after a drunken orgy than in my own bed. I couldn‟t have been better. Now I am in Germany, no family, no friends. I could very well die in the next couple days, maybe sooner. Indeed, I am fortunate that the tumor has not killed me already. “How did I end up here?” I think. For the life of me, I could not remember. Berlin, April 4 1999 “Hallo. Ihren Pass bitte.” Dazed, but not confused, I hand my passport to the German immigration agent. I have just arrived at Berlin‟s Tegel Airport, and my brain is slowly turning on the German switches. I am presently too weary and scared to speak German, so I move through the lines silently, listening in on other people‟s conversations but failing to recognize more than scattered words. “Where do I go next?” I remember. Take a taxi to the home of my gastmutter, Frau Elizabeth Pruessor. Looking outside through the window of the airport, I feel a burst of excitement rushing through me. I am starting my Germany adventure, doing German things, drinking lots of beer, hanging out with friends… I am a 21 year old Stanford University student, born in upstate New York, but raised in New York City, Greenwich Village right in the heart of things, from 4 years old. I‟m in Berlin for the spring quarter of my junior year. I thought about studying abroad all through high school, but never did, so when I got to college, one of my top priorities was to have an experience studying in a foreign country. Since I took German in high school, it made the most sense for me to choose Stanford‟s Berlin Program. This is not my first trip to Germany. I was here 3 years ago for two weeks when I was a senior in high school. That trip had been great fun, living with family friends in Greifswald, Berlin, Heidelberg, and Frankfurt, speaking German almost the entire time. Actually, I was in Germany briefly one time before that, with mom, dad, and my sister, Sophi. We took a ferry and driving trip covering 5 countries in 2 weeks, but I was so young that time, I have only dim memories of that holiday. To be honest, I have come to Germany intending to spend as little time at school or studying as possible. My real reasons for coming are much less intellectual: I want to see Europe as I‟ve never been able to before. I want to be an adult here, and while also spending time learning about culture and history, get a new 9/98

taste for exploring medieval castles, swinging in post-modern discotheques, and doing whatever else comes along, especially falling in love. “I‟ll be here six months. A dream come true – set loose on Europe a young man on his own. I‟ve got a light schoolwork load – just 3 courses (German language, Berlin architecture, “One currency, one economy” – a class on the Euro currency) taught at the Stanford center. I also want to work over the summer for a computer company and really get a taste of life here. “Wohin gehen Sie?” My brain cells with stored German switch on. The taxi driver looks at me expectantly, repeating the phrase. I stammer out the address, “Kreuzberg”. I am trying to listen to what the driver is telling me about Berlin, but I‟m still half asleep. I think he is explaining where The Wall used to be, how Berlin has changed since reunification, and so on, but that is just a guess. The jet lag from California is pretty bad, and I could use a nap. I‟m so lucky! I‟ve had a great year at Stanford, I‟ve got lots of great friends, and a wonderful girlfriend. I‟ve just completed another season with the ski team, this year as captain; I did really well except for that fall in the regional giant slalom race (there‟s always next year) and now I have the opportunity to come to Europe to study, work, and enjoy myself. It couldn‟t get much better. “OK. Hier am Links.” I pay the cab driver and get out. Home for the next 6 months, I think. I try to enter the building. Locked. I look for “Pruessor” on the list of names posted next to the door. Not there. I must be lost. Shit. What do I do now? How do I … “Tom?” From down the street I hear a woman‟s voice. I turn and see her standing by the door. “Yes, I‟m Tom.” “That‟s the wrong door. My apartment is over here.” The woman (who I think must be Frau Pruessor) is speaking flawless English, what a relief. I haul my bags down to the other entrance, we shake hands, and I follow her up the stairs. My brain is on auto-pilot. I tell her that yes, the flight was long, yes, I‟m very tired, yes it‟s wonderful to be in Germany. “Willkommen in Deutschland,” she says, “Welcome to Germany”. Elizabeth Pruessor is attractive, medium height, with a slight but strong physique, short blond hair, and a trim, stylish overall look. She is dressed very fashionably. My guess is that she is thirty something. Later, I think she‟s probably in her early forties. She has hosted several Stanford students before me, two of whom, I soon learned, happen to be friends of mine. She has a friendly face, but for right now, doesn‟t want to waste time with chit-chat. She wants to get me acquainted with the apartment and the neighborhood, get me started and selfsufficient first. She tells me for today English is fine, but from tomorrow on, it‟s all got to be in German. As she tours me around, I find out that Elizabeth is a speech therapist and that she spent 2 years at the University of Michigan, both of which account for her familiarity with English. The deal is that Frau Elizabeth Pruessor, officially the “the Gastmutter”, supplies a room and a German speaking environment. I pay Stanford, Stanford pays Elizabeth. Her duties do not include cooking for me or doing my laundry. I‟ll have to buy my own groceries or more likely, find restaurants and fast food, like kebabs and donar (a type of lamb kebab that is very popular in Berlin) on the street. As she tours me around the apartment, I notice that whatever her age, Elizabeth‟s partying and night clubbing days are not over. In the main foyer, in an open closet, I see that she has about a dozen pairs of leather pants, as well as a cache of trendy black boots and shoes. She must have an active nightlife; probably she‟ll be able to suggest lots of spots where I can meet foxy German frauleins. The apartment is dark but nicely furnished and quite large. There are five main rooms: my bedroom, Elizabeth‟s room, a sitting room, a kitchen, and a bathroom. There‟s a second bathroom off from her bedroom. My room is pleasant enough, probably twenty by fifteen feet, with large windows looking out onto the street, and a couch that folds into a bed next to the door. The basics are all here: desk, light, television, lamp, and clock radio. Wow. This is much nicer than my dorm room, and no annoying roommates. I‟m left to unpack and unwind. The room smells a little stale, sort of like the back seat of a well worn car. The apartment feels too quiet, too dark; haunted? As Elizabeth leaves, a sudden wave of loneliness and anxiety sweep over me. “Can I handle this? Can I take care of myself, survive in a foreign country?” The sudden aloneness hits me. All my friends are thousands of miles away, my parents too. It‟s about 5 PM here, which means that for Emily, back in Palo Alto, it is 8 AM – she‟s probably sleeping, hopefully dreaming of me.

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Emily is (or was) my girlfriend – which one, I‟m not sure. The breakup was not exactly effective. In early March, about two weeks before I left, she had asked me the question that both of us had left unspoken during our four month relationship. “Tom, are you going to break up with me when you go to Germany?” I struggled with my answer. I had always envisioned myself going to Germany single, wandering from bar to bar, town to town, and looking for love and new experiences. After all, I had chuckled, I‟ll just be fulfilling my dad‟s fantasies. Now here I am, in love and happy. I had found someone special, but I was leaving. Do I want to feel bound? Does it make sense to go to Germany committed to a girl back at home? Can I give her up? Now that I‟m off on my own, I still can‟t help thinking about her, and that I broke her heart and mine when I told her “yes, I want to be in Germany without ties.” Why shouldn‟t I think about her? It would be as silly as it would be futile to try not to. Emily and I parted on good terms. I explained to her somewhat contradictorily that breaking up was the last thing I wanted, but given the circumstances, it would be better for us as individuals and as a couple. She was not happy about this, but accepted it. I guess I didn‟t really give her much choice. She acquiesced to my desire to have adventures in Europe, as long as I promised to give her a chance to get back into my life when returned. “Ok,” I said. So much for a clean breakup. “Tom?” Frau Pruessor ducks her head into my room. She tells me to finish unpacking later, she‟d like to show me around the neighborhood and show me the best stores to purchase food and supplies, et cetera. She shows me a store which has sandwich meats, then a supermarket, a restaurant, etc etc. It‟s nice not having to worry about translating from German, but I‟m sure that I know enough to get by when the time comes. We return to the apartment, and I return to wearily unloading my bags. It‟s going to be so exciting getting to know all the different neighborhoods and parts of Berlin, and seeing different cities/towns in the rest of Deutschland. I finish my unpacking, stow the last of my belongings in the proper places, and go find Frau Pruessor in the kitchen. She notices how tired I look and recommends a shower, but I tell her I think I‟ll just go to bed now. “Thanks for everything,” I say. “I‟ll see you in the morning – or whenever,” I correct myself. The next morning “Tom, you have to go to the Stanford Center today. I‟ve got to go to work. Have a nice day!” Frau Pruessor shuts the apartment door; I wake up. It‟s 9:49 AM. I roll out of bed, and try to clear my head. “I feel hung over… must be jet lag”. I‟ve flown all the way from San Francisco, 14 hours, not to mention a 9 hour time difference. I‟ve forgotten everything she told me on that neighborhood tour yesterday. Never mind, I‟ll find it all again. My head aches mildly. I should take some aspirin or Tylenol, but I end up just accepting the headache. I start on a bowl of cereal before I remember Frau Pruessor‟s instructions: All the Stanford in Berlin students (about 20 of us) are supposed to meet at the Stanford Center near the Frei Universitat. Where is that map she drew me? Damn. I start to dress. It‟s ten o‟clock which means that it‟s 1 AM in california, and many of my friends are probably finishing up projects or assignments – or beers… I‟m sure Emily is still awake, probably either working insanely hard, or partying. Either way, she‟s probably being as wonderful as I remember. It‟s a trek to the Stanford Center, I take the U7 (the “U-bahn”, or unterbahn, is the subway system in Berlin) two stops west, then the U1 three stops south, towards Krumme Lanke. The name Krumme Lanke is amusing; it sounds like “crummy lake”. The whole trip is about half an hour if traveled directly. I‟m supposed to walk from the Ubahn station, but in my usual haphazard style, I‟ve forgotten what street the center is on, and I have no way of finding out short of going back to the apartment. I finally arrive a couple of minutes after noon, about 2 hours late. I walked about 3 miles up and down the wrong street, and finally realized that I was on the wrong street, and, having walked one block over to the next parallel avenue, found the center within 10 minutes. Everyone else has already gone through orientation. To my embarrassment, I am the last one to sign in. “Willkommen in Deutschland Tom!” Welcome to Germany. I feel tired and my head hurts. But I can deal with it. It‟s not that bad. I‟ve always been able to handle pain, like the times in high school when I had to wrestle with a broken finger, or with stitches in my forehead, or trekking on the Columbia glacier in Alaska with a 70 pound pack. The Stanford center is a brick mansion on a quiet suburban-type street. It has beautiful gardens outside, and inside contains a library, computer cluster, 5 or 6 classrooms, and facilities for the administrators. It is about 11/9 8

a half mile away from the Frei Universite, one of the two major universities in Berlin, where we can also coregister for classes if we desire. I don‟t know about the others, but I don‟t want to do the work required to take a class taught solely in German. I think I will stick to classes at the center. I sign in at the Center, get my information packet, a stipend for meals for a month, and mingle with the other students. I wonder if their motives for being here are as unacademic as mine. Probably. “Hey there Tom, you made it. What happened? Did you get lost?” It is Kathy Steel, a friend from Stanford. Kathy has shoulder length dirty blond hair, a bright, oval face and a sweet smile. She smiles at me right now, which only increases my embarrassment over my journey. How could I have gotten so lost? We joke about my wandering trip to the center, discuss home, and make plans for all the spots in Berlin that we have to go to. Although not a close friend, I like Kathy and I can sense that she‟s going to become a close friend here. Standing next to her is Mike Rosenbluth, a good friend of hers from Stanford who she introduced me to. I met Mike once or twice before I left, and he seemed a nice, fairly quiet, fun person. I‟m glad he is here too. He‟s a little taller than I, maybe 5‟ 10”, with short, crew cut blond hair and clothing straight out of J Crew. He‟s good looking, but he doesn‟t act like he knows it. A girl comes over to join the group. She introduces herself as Sarah Fessenden, a sophomore – a year younger than we. She has short brown hair and a round face with a huge smile printed permanently in it. I like her immediately. We chat for a few minutes, until I notice Bri sitting in the computer cluster, probably emailing. I excuse myself, and go to greet her. Brianna is, in fact, writing an email, but she‟s happy to see me. Tall with brown hair, a slim figure, and a silly, fun-loving personality, she is just my type. I had met her at Stanford through a mutual friend, who knew we were both going to Germany. That day she was cold and aloof, and I didn‟t like her at all. However, on a subsequent occasion I had seen a wonderful, sweet, soft side. Today, she‟s the sweet Bri, and gives me a big hug and a kiss. Weeks later, these four, especially the three girls, would be constant visitors at the hospital and form an integral part of my support team. “Hallo Tom!” I wheel around. It is my cousin Nick Capetillo. I give him a huge hug and ask him what he is doing here. “Here in Germany?” He asks. No, not here in Germany. I knew that he had come over at the beginning of his fall semester at Cornell to study in Berlin. I wanted to know how he knew I was here, how he had found me, and how he was getting on in his studies. He explains that he is taking classes at the Frei Universitat next door, and decided to stop by to see if I was here yet. Happily, he found me. Nick is my cousin – Well, not really a cousin, but almost. As the nephew of my uncle‟s domestic partner, he is nearer to being a cousin to me than anything else. Nick and I were born on the same day of the same year. We‟ve been good friends since we first met, a few years ago. I respect Nick immensely. He is interesting, intelligent, mature, very positive and fun loving. Born in Mexico, claiming Mexican and American citizenship, he was brought up speaking Spanish and English from birth. After high school in Mexico, he went to Cornell for two years where he majored in German studies. Looking for new challenges, he designed his own program to study in Berlin in his third year. At the Frei Uni he‟s studying Japanese! Nick is a great human being and a wonderful friend. “Was sollen wir tun?” I ask Nick sheepishly. What should we do? “Alles!” he says. Everything. “Trinkst du gern ein Bier? Komm!” Let‟s go get a beer. People are beginning to leave the center, going out to explore Berlin and wreck as much havoc as a 20something can on a nice spring day. Nick and I head off for adventures unknown.

“I think it‟s sinusitis.” I‟ve been at Stanford for 3 years without having to see a doctor, and here I am, just off the plane in Berlin a couple weeks ago, and I‟m sick. My head is killing me. I was hardly able to get on the Ubahn to get to the doctor‟s office. “Are you sure?” My headaches and fatigue have gotten so bad in the past week that I‟ve had to ask Karen Kramer, the Center director, for a doctor‟s referral – She sent me to Dr Lisa Luccini who is an English speaking general 12/9 8

practitioner, and has experience with Stanford. I do not like to see doctors for silly things like headaches, fatigue, or runny noses, but I‟m so tired that I‟m not able to attend classes. Here I am again, complaining about the same symptoms to the same doctor. When I first saw her, seven days ago, I thought maybe I had mono, passed on from Emily, who had suffered with it last quarter. Dr Luccini told me it was probably not mono, and that it‟s probably sinusitis. She repeats that diagnosis today. But, if anything, I feel worse, and neither the homeopathic medicine she prescribed me, nor the antibiotics given to me by the hospital I visited a few days later have been working at all. I‟m feeling worse, and we‟re no closer to a cause. “Yup. Positive. Sinusitis. Keep taking your eucalyptus pills.” A few days after seeing Dr Luccini for the first time, my symptoms were still getting progressively worse. I asked Frau Pruessor if she could recommend a hospital, and at her recommendation, I went with cousin Nick to the Benjamin Franklin Klinik. The doctors there were all obviously baffled by what was ailing me, and after a few hours of tests that revealed nothing, they also concluded that I must have sinusitis and that I would get better very shortly. I asked them for a brain scan, to rule out dad‟s idea of brain tumor. They tell me it is not necessary, my symptoms would be different if that were the case. I came to Germany for a good time, and here I am sick and unable to go to school, much less explore the city and carry on a wild nightlife. All I want to do is sleep. Sinusitis? She seems so sure. Is that all this is? I hope so. I can‟t believe that it‟s just a sinus infection. Could it be mono? Every time I start to feel a little better, the headaches and fatigue return worse than ever. Maybe I have Emily‟s mono; probably. It is not hard to imagine that I could have caught it from her. I am so tired. That‟s mono, right? My instincts tell me this is not sinusitis or mono. I am in way too much pain, and the medicine is ineffective. On top of that, the symptoms don‟t match. Yes, I am weak and drained, but my nose is not running, and vision seems distorted, and I am not getting better. Whatever it is, it requires a solution, because while the pain is horrible, I fear that something worse is about to happen. I indicate my displeasure to Frau Doktor Luccini. “That‟s what you told me last time. I‟ve taken the medicine, but I‟m not getting better!” The doctor‟s office looks well stocked and cozy. It is not large, but the only person I see there is Dr Luccini, so she probably doesn‟t need that much space. It is decorated in a very American manner, and it feels in every way like going to the doctors in the United States, especially because Frau Luccini is from California and still has her Californian accent. The Benjamin Franklin hospital also felt very modern and American. The nurses all wore blue uniforms like in the US, and the carpeting, white walls, and wall ornaments could all have been found in an average American hospital. I‟m scared that this is something more serious than sinusitis. But what could it be? The only other answer that comes immediately to mind is too scary to contemplate. My dad has been saying for weeks that it could be a brain tumor. Could he be right? What does he know? He hasn‟t even seen me since I got sick. This is just his normal anxiety, I hope. Our close family friend Eric Ehrenberg had a brain tumor when he was about my age. He was suffering with headaches, fatigue, and nausea, same as I am right now, and he almost died. My friend Ben Tomsky also had a brain tumor last year. For me to have one too … too much coincidence. It must be something else. But what? Maybe mono, but I didn‟t test positive for having active mono cultures. So what could it be? I want someone to tell me what is causing this terrible pain in my head, and how I can stop it. Am I going insane? Is that it? Everything was going so well before I came to Germany, I‟ve always been very healthy and active, and it‟s frustrating to be sidelined with this mysterious illness, going around in circles with these doctors while I should be off taking advantage of the opportunities around me. My headaches are becoming excruciating, and along with them, it‟s becoming harder and harder to think straight. I‟m confused, I don‟t believe my doctor‟s diagnosis, and I am scared and frustrated. I am losing the ability to take care of myself and make intelligent decisions. My brain isn‟t working right; it‟s protesting. My German adventure trip has become a living nightmare. I take the Ubahn back to Frau Pruessor‟s. On the train, I notice the strange tentacles of light eminating from passengers‟ bodies, the same tentacles I first noticed a few days ago. It‟s as if I can actually see their life cords to heaven. The cords are coming out of people‟s heads, chests, eyes, everywhere. At first I had to look hard for them. Gradually, they become more and more visible until I cannot dispel them. Everyone seems to have at least one. I wonder if I am experiencing some kind of religious revelation. I wonder if anyone else can see the tentacles of light? I wonder if I‟m making this up, or if it‟s real. Am I delusional? I do not really know what‟s happening anymore. All I know is that I‟m very sick, and very alone. “It might be a brain tumor.” 13/9 8

Elizabeth has called my parents who are still skiing in western Canada; she‟s worried, I am too sick. She has managed to find their phone number, call them, and tell them that she is very unhappy with my condition. I keep saying I‟m getting better, but I‟m getting worse, or so she says. She hands me the phone. “Talk to your parents. Tell them what is happening.” I get on the phone and speak to my dad, who reminds me for the umpteenth time that he‟s worried that I have a brain tumor. I don‟t know what to tell him. I‟m sure it‟s not a tumor, but why? Is it really impossible, or am I just in denial? If it could be a tumor, wouldn‟t they have given me a brain scan by now? My parents are very worried about me. It‟s been 3 weeks, and I as much as I try to persuade myself that I am getting better, I am not. Things are pretty much the same. Maybe a little worse. The headaches are digging away at my sanity and making every waking moment miserable. They consume all my energy; I am exhausted mentally, physically, and spiritually. “It‟s not a brain tumor!” It might be mono, it might be sinusitis, it might be something else entirely, but it is not a brain tumor. It would be too weird if it were a brain tumor, too much of a coincidence. There is no way the dice could have been rolled this way when God was creating my generation. Statistically, it would not make sense. It would be outrageous. But I‟m getting worse. I do not leave the apartment now, unless it is to go on some other futile doctor visit. None of them seem capable of telling me anything useful. It is always the same thing. Sinusitis. Migraine headaches. I interpret the looks as “You‟re making it up, young American. There is nothing wrong with you.” I allay my dad‟s fears for the moment. He seems satisfied that I sound good, and that Elizabeth is exaggerating the severity of the situation. He‟s too far away to see how hard my daily struggle has become, and how much I‟ve deteriorated. A few nights ago, I drank a soup that Elizabeth prepared for me. It was nice to have something fill my belly, but it did nothing for my headaches. A few minutes after finishing my dinner, a wave of pain and nausea hit me, I ran to the sink, and vomited the dinner up. Since then, I had not had anything solid to eat. Now on the phone with my dad, I don‟t mention the vomiting. It will just make him worry more. And that is exactly what I don‟t want. More stress – more people stressed out about my health, telling me what to do. I just want to lie down and deal with the pain. That will make it go away for a time. Dad asks me again if I will meet him on his trip to Florence. The first time he asked, a month ago maybe, I told him probably. Since then, as I‟ve gotten worse and worse, my answers have been less definite. Now I tell him I don‟t think I can make it. “You‟re too sick to make it? I‟m really worried about you Tom!” I tell him that I will keep going to hospitals, that the situation is under control. I will get to the bottom of all of this, and I will get better. I promise. He tells me he loves me, we hang up. “That‟s right, Sinusitis.” It is another new day, and I have gone to another new hospital. Each one just reconfirms the diagnosis of all the previous ones. Sinusitis, they tell me, clear cut case. You‟ll get better. Thanks to my dad‟s constant warnings I am concerned about the possibility of a brain tumor. This ultimate fear is always there in the back of my mind, yet none of the doctors I see seem to think there is cause for a brain scan. Who am I to tell a doctor his business? If they say I don‟t need a brain scan, what makes me think I do? Because my father 7,500 miles away thinks so? Yet I know it would do a lot to calm my fears, and those of my parents (my dad particularly) so I keep going back to hospitals, keep asking them to help me, and keep receiving the same confused, puzzled looks, when no obvious disease is found. They are not interested in scanning my brain. “Probably sinusitis, it‟s got to be,” I hear over and over again. I fear that I will never get well. Perhaps I‟ll have excruciating headaches for the rest of my life. I shudder at that thought. Maybe I would kill myself. I think so, yes. I could not live with this pain. This is hell. I am having terrible headaches, the worst yet. My head feels like it might explode at any minute. I lie in bed all day, shuddering, using all my strength to fight the pain. Still, the headaches grow worse. When I can think at all, I think about how much I miss Stanford and Emily, and how I wish my family were here, head safely tucked in my mother‟s lap, so she could tell me – my mother knows about a lot of things, especially about diagnoses – “Don‟t worry. I know what you have. This is a case of (fill in some term you have never heard of before, but that turns out to be exactly right) I‟ll get you all fixed up with this neat bottle of pills that you‟ve never seen before but will have you healthy again in 3 or 4 days.” My mother, an accounting professor at NYU, 14/9 8

is astounding at medical diagnoses. With the aid of her medical encyclopedia, she can solve puzzles that stump the doctors, and she‟ll be right! She can just do that. It is as astonishing and maddening as it is valuable. She has no right to know all this stuff, or to be right so often, but she is. Suddenly a wave of nausea hits me and I run to the bathroom. I barely make it as I projectile vomit my dinner into the sink. Frau Pruessor comes in. “Tom! You are very sick! Why are you throwing up?” “I just felt nauseous. I‟m getting better, honestly.” And then it hits me, sort of out of the blue: I could die here in Germany. This illness, whatever it is, could very well kill me. I push the scary thoughts out of my mind. Impossible. I‟m still doing ok. These headaches are tough, but they will pass. Maybe not soon, but I will get over these headaches eventually – It is a passing problem, and I‟ll have a happy life. Definitely NOT a brain tumor. Or maybe it is. I am so confused and enervated by this constant pain that I cannot complete the thought. Another wave of pain rushes to my head and I have to use all of my strength, mental and physical, to resist crying out. I lie in bed like this for a long time. How long, I do not know. Half an hour? An hour? Gradually, it fades a little. It is still very painful, the only thing I can think about, but I can handle the pain more easily. I relax a little. I lie like this for hours, until another wave hits me. Finally, I fall asleep from sheer exhaustion. My final thoughts as I pass out are of my life before. Before the headaches, before Germany, everything was great. I had great friends, a great girlfriend, a great family, and a wonderful life. And now I‟m at the other end of the spectrum – perpetual agony. I do not know what day it is. I do not know what is happening in the world. I am not even sure I know where I am. All I know is pain. I cannot live this way. If I have to, I will kill myself. I cry myself to sleep, thinking about how my life has gone so far downhill, that suicide is looking like an attractive possibility.

I awake with a single dominant thought. I need my mom and dad. As quickly as possible, I need their help to get me through this, otherwise I know I will die. Everything so far has been going horribly without them. First I‟m tired, then I‟ve got headaches, now I‟ve got tubes coming out of my head. If they don‟t get here soon, I‟m going to die. I will die alone, without family, at the lowest, most unhappy moment of my life. I call a nurse who says that he will bring me a cellular phone. Punching in the international code for the United States, he hands the phone to me. Dial your family. I take the phone weakly and dial my home phone number, the only phone number still accessible from my once splendid brain. The phone rings twice. The voice is my sister‟s. “Hello?” “Hello Sil-Sol.” That‟s my play name for my sister, Sophi, “It‟s Tom. I‟m in Germany, I have a brain tumor.” I start to bawl. I can hardly hold the phone and the nurse has to help me. My sister is stunned. At first she does not believe me, but after a moment, she says, “Oh my God.” Quietly, over and over again. She tells me she will get mom, and puts down the phone for the moment. My sister and I have always had a tumultuous relationship. She is 2 ½ years younger than I, at times a princess, always a specialist at upsetting me when she wants to. She has just finished her first year at Brandeis University, and I haven‟t spoken to her since mid-January when, while she was visiting me at Stanford, we had a terrible fight that led me to announce that I wasn‟t going to speak to her until she apologized, which she hadn‟t. When we were young, we looked so much alike that people thought we were twins. We both had dirty blond hair, round, cute faces, and were about the same height. There were even a couple years when she was taller than I was. During our childhoods, I had an extremely short fuse which my sister always knew how to light. She was a master at teasing me, infuriating me to the point where I would punch her to try to get her to stop, and only after I had told her (sometimes begged her) to stop over and over again. This, in turn, would upset my parents, who would punish me for resorting to physical violence by denying me dessert or sending me to bed. I thought it terribly unfair that my sister could torment me, and that I would end up punished. Mom gets on the phone. I tell her what I had just told Sophi. Although I expect this story to knock her down, physically and mentally, she seems unphased. She sounds concerned, but completely in control. Somehow this makes me feel better, like I‟m being fortified by the strength she is transmitting. She asks a few details, and tells me she loves me. “Ok,” she says, “I will call dad and we‟ll be there as soon as possible. Where are you?” 15/9 8

I tell her I don‟t really know myself, and I hand the phone to the nurse. When he finishes giving the information, he hands me back the phone. “What is the phone number there? What number are you calling from? How can we get updates?” My crying has almost stopped. I‟m beginning to calm down. My parents will be here in the next day or two. Maybe I‟m not doomed. Yes, there is hope. Mom is the one I‟ve felt the closest to most of my life. Psychiatrists say it is natural for the son to feel closer to the mother and the daughter to feel closer to the father, and so it was in our family during my childhood and adolescence. We were the two most technically minded, always playing with the new gadgets longer than dad or Sophi would, and this common interest in math and technology has always been a bond between us. She always seemed to be on my side in disputes with my sister, while my dad always seemed to be on her side. Mom would never tell me what I should be doing, and whenever I would call home and tell her what I had been doing and learning at Stanford, she was always the most enthusiastic. She always told me “amazing”, “fabulous”, “wow”, that what I was doing was really super. I could always count on her for moral support. Well, they are on their way now. Thank God. While I still feel miserable, I‟m not as low as before. I remember something else. When I had arrived in the taxi, they took me into a room with a scanner. I do not remember entering the hospital, or the room with the scanner, but I do remember that the scanner was like a luggage conveyor, and as I traveled around the room, up and down ramps, around the walls and up almost to the ceiling, they were scanning me. Presumably, they wanted to know what all this motion would do to me. I remember it was a fun ride like a roller coaster, only slower and peaceful. Except for the track, the room was all black and very soothing. I awake with a start. The nurse who gave me the phone before is back, holding out the phone to me. It is dad. “Hello Tom. I love you. I‟ll be there soon. How are you doing?” I explain that I am doing pretty bad. I am scared out of my mind, I think I‟m going to die, and I need him. “I‟m leaving for Berlin on the next flight. I‟ll be there tomorrow morning. Just hang on. I love you. Please just hang on until I can get there, ok?” Sobbing, I say “alright,” and we hang up. I need him here so badly. I need someone to take over all the thinking, to tell me where I am and what has happened to me, and what needs to be done. I need my parents to save me. My father has been the most important figure in my life. Not to take anything away from my mom, it is my father who I compare myself to most directly in my family and as I was growing up, it was my father who served as the primary role model of what I could be like as an adult. Some of what I saw I did not want to be. But before I became anything, before I made any choices about what I wanted to be like, it was my father, the way he acts and talks, that influenced what I wanted to be. Dad has tried to share everything in his world with me, and more often then not, succeeded. We have great memories of ski trips with just the two of us sharing a room, coming back every day exhausted and recounting the days skiing. We love to play tennis and racquetball together. We share an intense love of scrabble, and although he is a high power law professor, I almost always beat him. We have shared a great many trips together. I remember jogging together along the beautiful waterfront in Capetown. White water rafting on the Zambezi River just below Victoria Falls in Zimbabwe. The most fun adventure for us so far was our trip to Japan this past fall. We spent two terrific weeks in Japan, cementing an already strong relationship. We love each other, and love each other‟s company. My father is a hard man to live with. He is bossy, and is always telling you what you should do next. When you‟re not doing anything constructive, he will give you ideas of what you could be doing, and he is not happy until everyone is in motion, in pursuit of some goal or another. He doesn‟t recognize the word “relax”, and he deals with vacations the same way he deals with work. Do as much as possible. But my father is a great man, and a caring man. In my entire life, I don‟t think he has promised me one thing that he did not deliver. He has never left me wanting anything (except sometimes a little peace!) and gave me a wide amount of freedom growing up, especially in junior high and high school. He has been a terrific father, supportive of me when I started learning computer programming, and very supportive when we discussed going to California for college. Dad always encourages me to try new things, be well rounded, and do my best. At every possible opportunity, he tells me to follow my dreams, helps me to foster my intellectual creativity, provides a loving ear when I need it. The news that they would be with me tomorrow before noon lifts my spirits immensely. I just need to make it through tonight. They‟ll be here tomorrow. They‟ll take care of me. 16/9 8

I know my brain function is deteriorating. I have nightmares, like my brain, taken over by the evil tumor, is trying to convince me that there is no hope, that no one is coming to save me, and that I will be tortured till I‟m dead. The demons mock me, make me uncertain of everything – whether I am sleeping or awake, where I am, and after a couple days I even start questioning whether I was ever Tom Jacobs in the first place. My past is very blurry. I flirt with the idea that I am someone else on a top secret mission posing as Tom Jacobs and that only now, as I am dying, will my real identity be revealed. I wonder anxiously whether my whole life, all my relatives and family, are all just a dream, an implanted memory. I am paranoid. Are the nurses and doctors humans or aliens in human disguises? I wonder if I am really on earth, or somewhere in space. I think that I am going mad. That night I cannot sleep. I roll from side to side, watching the monitors tracking my life signs. They look like some crazy expressionistic art. Oh, it will be wonderful to have my parents here. The nightmare will end. I will get back on solid ground.

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Chapter 3: Nick‟s Tale
Nicolas Capetillo, Spring in Berlin Before he arrived in Berlin, I really didn‟t know Tom well, although I felt a bond with him because with him because we had become family when my aunt Nancy and her children moved in with his uncle Dan. I had spent one warm Thanksgiving at Tom‟s apartment in Greenwich Village. On another occasion we spent a day together at aunt Nancy and “uncle” Dan‟s house in New Jersey. On these occasions we had gotten along well. We had talked and compared our experiences as college freshmen, discovered a number of odd coincidences about each other. We quickly discovered that we share the same birthday, January 13, 1978, only an hour apart. Also, Tom was born in Ithaca, NY when his parents were professors at Cornell, the college I was now attending. I liked Tom's subtle humor and zany wit. I thought that we might become good friends if we weren't going to school in opposite corners of the country. However, as fate would have it, coincidentally Tom and I both found ourselves to be on track for Berlin during our junior year of college. We didn't plan it that way - I am a German major and was in Berlin to improve my language skills. I had been in Berlin for a semester already when Tom arrived at the Stanford center. That was just down the street from the Asian center where I was taking Japanese classes. I was very enthusiastic about having Tom in Berlin, just hanging out together and maybe doing some travelling. I had been living with my German host family and attending the Freie Universitaet for the past six months. Although I felt well integrated and was quite happy going to the University and hanging out with my German friends, I couldn't wait for Tom to get there so we could speak in English. I was also looking forward to showing him around Berlin, especially because he had been a great tour guide when I visited him in New York City. I called the Stanford center about a week before the new bunch of students arrived. The program coordinator, Maria, told me I would find Tom there next week. I walked over to the Center after class one afternoon, feeling great about being in Berlin, the center of Europe. Spring had arrived early, tulips were blooming everywhere, and it felt good to be outside wearing just a sweater. I cut across the park and watched a Dalmatian and a Beagle chasing ducks on the pond facing the Stanford center. I followed the wrought iron fence around the estate until I found the front gate to the huge white stone mansion that was the Stanford Center. I walked in to the student lounge and saw Tom at a computer reading his e-mail. "Hey Tom!", I said, "que pasa cabron?!" "Nick, what are you doing here!?", he answered looking quite surprised. "I should be asking you that", I said, "I've been here, you just arrived. Anyway, its good to see you." "Yeah, you too", Tom said turning back to his computer, "just let me finish checking this e-mail, I've been trying all day to log on and I just got it to work." I let Tom go on with his e-mails and sat down at the station next to his. I looked around at the other people in the computer lounge. "They looked sooooo, American!" I thought, and laughed at how my time in Germany had changed me. "So tell me about Berlin", Tom said still reading e-mail, "what's it like, where are you living, how's everything." I tried to think of where to begin. A lot had happened. There were many things I wanted to talk about, my impressions of the people, the difficulty of the language, getting used to the teaching style, my girlfriend. Where to start!? "Well, the beer is great!" I said. "Finish checking your mail so we can go to a beer garden while the sun is still up. The Koenigin Louise just opened its Biergarten this week.” "Yeah", said Tom, turning away from the computer for a second, "I could really go for a beer. Just let me answer this one from Emily and I`ll be right with you. Have I told you about Emily? No, I don't think I have. Well, she's this great girl I met at Gaieties, which is this show we put on before our big game against Cal". When Tom finished his e-mail, he introduced me to a bunch of students also in his program. This was always one of the weird things that happened when we had to introduce each other. Tom started out with "Sarah, this is my cousin Nick from Mexico, he's my uh, kind of cousin sort of, but not yet. Anyway, Nick, this is Sarah." A couple of these students said ok, and came with us to the Louise Biergarten. I ordered Berliner Weisse "mit schuss" for all of us explaining that this was a Berlin specialty. "Cherry or Peppermint", I offered them the choice. "I thought we were having beer", they said. "Yeah, we are, I answered feeling like a devote of the Biergarten, "it's just that it's a very light beer and Berliners put a shot of sweet syrup in it. There‟s cherry red or peppermint green.” Tom and the girls were curious. We clicked glasses said "Prost", and started drinking. We talked about the history of Berlin and what it was like living here. We all had our reasons for coming here, some just wanting to get out of the States and some looking for something. I think it was a mix of both for all of us.

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After the first round, I started to order a second but Tom said he was tired and would like to rest. I teased him a bit about being a lightweight but he blamed jet lag. We agreed to see each other on the weekend at the Hackischen Markt. I saw them to the U-Bahn at Dahlem Dorf and we parted. It was going to be a lot of fun hanging out with Tom in Berlin. The next time we got together with a whole gang from the Stanford Program. We ended up in an Irish Pub drinking tequila shots and singing along with the guy on stage playing Jimmy Buffet songs. It was a weird mix of setting, drinks and entertainment but we had a great time. Tom was his usual life of the party, recounting numerous misadventures and making us laugh. He didn't mention anything about a headache and just kept calling for more tequila. I was enjoying this new bunch of friends so much that I ended up inviting the whole gang to a barbecue at my place the next weekend. The barbecue went well, we grilled spicy sausages and potatoes and onions and sat around drinking Jever and Berliner Kind in the back yard. It was a blustery spring day and it kept threatening to rain all afternoon. In the evening, it started to drizzle and we ended the day chatting around the kitchen table over warm sake. Tom and the others were planning a trip to Prague for the next weekend. I had a big test coming up the following Monday so I couldn't go along. The next time I saw Tom was when he came back from Prague. He'd had a great time and couldn't stop telling me how amazing Prague is. But he had a bad head cold with terrible headaches, and had lost his appetite. His host mom got him throat lozenges and antihistamines. Tom told me this in the subway one night on our way my friend (soon to be girlfriend) Juliane's birthday party. My friend Ludolf, Tom and I had taken the U´bahn down to Juliane's neighborhood. When we were walking up the platform towards the station exit Tom suddenly stopped, holding his head. I turned to see him in obvious pain, bent over with his eyes shut. I asked if he was all right. He said he just had to stand still for a minute and it would pass. Ludolf and I stood there not knowing what to do and Tom eventually straightened up again and opened his eyes. "Ok, I'm better now, let's go", he said. "Are you ok Tom?", I asked, "I mean, if you're not feeling well we'll take you home and then catch up to Juliane and her friends later." "No, its ok," Tom said, "the headache usually comes on really hard and then goes away for a while." "Are you sure?" "Yeah, if I'm really not feeling well I`ll tell you". So we went to the party, hung out, drank wine, and talked to Juliane's girlfriends. We left the party early. I went by the Stanford center on Monday after class to find Tom. He was in the lounge talking with some friends. I invited him over to my house for dinner. He said he wasn't feeling any better and his host mother had taken him to the doctor the day before. He just got more cold medicine and was diagnosed with sinusitis. Just after leaving the Stanford Center Tom doubled over in pain. I stood next to him, wondering what was happening, wondering how I could help. We must have stood there for 5 minutes. Then Tom stood straight again and blinked the pain out of his eyes. He looked pale and unsteady. He said the spell had passed and that we could go on now. We caught a subway and then a bus to my house talking all the way about how he was feeling, the symptoms and what the doctors had said. The first diagnosis was a sinusitis but Tom didn't have a runny nose or a cough. I suggested he go get a second opinion. The medicines he was taking didn't seem to be doing anything for him and the headache episodes were pretty scary. As we walked down Bergengruen Strasse to my host family's house, Tom asked if I would go with him to a doctor the next day. Tom didn`t have much of an appetite at dinner but entertained my host mother Mechthilde with his anecdotes about life in Berlin and showed off his newly acquired German skills. After dinner Tom experienced another killer headache and asked if he could lie down in the dark. He was in terrible pain, unable to speak or respond as he lay, clenching his teeth and curled up on my bed. Light hurt his eyes and sound bother him as well, so I stopped talking and just left him to rest in the dark room. About an hour later Tom came to the kitchen where I was studying and Mechthilde was feeding the dogs. Mechthilde suggested that Tom spend the night so he would not have to travel all the way back to Steglitz, but Tom said he really preferred to get back home and didn't want to impose. My host mom said she would drive him. The next day I accompanied Tom to the Benjamin Franklin hospital. At first there was some delay about Tom`s American insurance coverage but fortunately we made it clear to the young woman at reception that we needed an appointment immediately and that Tom had all necessary coverage. While we waited for the appointment Tom laid down on a cot in a little curtained off room. An elderly woman and an elderly gentleman occupied the other two cots. When a pregnant woman came into little room though Tom got up saying, "Sie koennen mein Platz haben." (You can have my place) The woman gratefully took his place on the cot while Tom and I took chairs in the waiting room outside. The first time Tom was paged over the speaker neither of us realized it. He must have been paged several times because finally a stout nurse came into the waiting room 19/9 8

looking frustrated and demanded angrily, "Herr Jacobs, wo sind Sie denn?!" Tom stood up and answered, "Oh, here, ich bin Herr Jacobs" and he was pronouncing his name with a German accent after realizing the confusion that had occurred. The nurse eyed us with some mistrust and then said, "Kommen Sie". She led us down the corridor to a young doctor who visibly enjoyed the chance to practice his English with us. The doctor checked Tom's sinuses, ears, and throat and reported that he couldn't see anything other than a little redness in the throat. He listened while Tom told him that the headaches had been getting worse and the medicines were not helping. The doctor opined that it was not a bacterial sinusitis but a viral type that would not respond to the antibiotics. He prescribed some nasal rinses and throat lozenges. I asked if it was possible that there was something else wrong, weren't other test that could be done? I told the doctor that I`d witnessed Tom's headache episodes and that they were frightening. I told him Tom was a pretty tough guy and he wasn't just making a big deal about a little headache. I had seen the headaches get worse over the week and tried to persuade the doctor that it might be something else other than a soar throat and sinuses involved. But the doctor reassured Tom and me that the nasal rinses should clear the infection up and that aspirins would be enough against the headache. Tom and I left the hospital hopeful but a bit disconcerted. We took a cab to a pharmacy in Steglitz and gave the pharmacist Tom's prescription. When we got the medicines Tom looked them over and said, "This is the same shit I've been taking for two weeks!" We walked the rest of the way to his apartment and he called Emily. He insisted I talk to her and try out some Japanese phrases I`d learned. Then we called Tom's sister Sophi and his parents. I talked to them briefly, explaining that Tom was feeling pretty bad but that we were hopeful that this sinus infection would clear up soon. I promised to keep an eye out for him. Tom's host mom was returning from her trip that evening so I said goodnight to Tom and caught the train home. The next day I got a call from Tom's host mom. She told me that Tom had been admitted to the Virchow- Charite hospital that morning and that the CAT scan revealed a tumor in his brain. She asked me to get in touch with Tom‟s parents and tell them to come to Berlin as soon as possible. I spoke to Jan immediately, promising to keep her posted. I then called the hospital to find out where Tom was and his condition. The Virchow clinic was a good forty minutes across town. When I got there it still took quite a while to find the right building and the right ward, since the hospital was in a huge park with many buildings and wings all built around extensive gardens and walkways. When I finally found his room, Tom was gone, the nurses told me he was being scanned, although they couldn't or wouldn‟t tell me much about what had been discovered. I waited for my chance to see him, worrying all afternoon in the waiting room about what might have happened since I last saw him. The next day Tom‟s father and sister arrived to join me in the afternoon. Everyone was distraught; they looked like they hadn't slept all night. I hugged them both and told them that as far as the nurses had told me, Tom was ok for now, and undergoing tests. I helped Jim and Sophi to check into the guesthouse next door to the Virchow-Charite hospital. It was dark when we returned to the hospital, and Tom was asleep. The doctors explained that they had found a tumor in the center of the brain which had created a blockage which in turn caused accumulation of fluid, although at this point it was impossible to know what kind of tumor it was. This was what had caused the headaches, not some stupid sinusitis. The doctors expressed doubt about flying Tom back to New York for surgery. I stayed with Jim and Sophi for a while that evening and then took the train home. I was in a daze. How could this be happening to Tom? In one day what had seemed like a perfect time in Berlin had turned into a nightmare of hospital wards and waiting rooms, exasperating waiting, anxiety, frustration, even guilt. As I sat in the rattling S-Bahn car on my way home I wondered how Tom felt now, lying alone in a hospital room. We asked the doctor just the day before if it couldn't be something other than sinusitis, if there weren't other tests. I began to blame myself for not insisting that the doctor do a CAT scan right then and there. What if just that difference of hours would mean a difference between life and death? I should have stood up for Tom; instead, I had just submitted to the doctor. I stopped myself from following this line of thinking. I was getting angry and worked up, clenching my teeth and wanting to smash things in the S-bahn car. I swallowed hard and let out a deep breath. I knew there was nothing I could do right then to help Tom. I closed my eyes and thought about Tom alone in the hospital. I wondered if he'd woken up, if he knew his dad and sister were there. I wondered if he was afraid. I wondered why it was that Tom was there and I was here. I imagined myself lying in the hospital bed, knowing there was something alien growing in my brain and not knowing if it would kill me. I looked out at the lights of Berlin rushing past and decided there was one thing I could do for Tom. I closed my eyes again and started to pray.

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Chapter 4: “The Call”
Jim Jacobs, May 20th On the airplane over the Atlantic, with Sophi beside me, I feel dazed, frozen. Just hours earlier, I had been in my NYU Law School office, having just flown in from Washington D.C., preparing for an evening flight to Florence, Italy to participate in a conference on police integrity that my colleagues and I had been planning for over a year. I was looking forward to seeing many European friends and colleagues, and to enjoying NYU‟s magnificent conference center at Villa La Pietra. I had invited Tom to join me in Florence or in Rome where, after the conference, I was going to give some lectures. Tom hemmed and hawed but finally said he wasn‟t feeling well enough to fly. I had been quite worried about him for weeks, but he continually allayed my concerns, telling me that he had all the symptoms of sinusitis and was actually feeling better. I had considered flying to Berlin to see him, but what could I do, or so I rationalized. The phone rang. Sophi‟s voice was tense. “You‟ve got to come home right now; Tom is in the hospital with a brain tumor.” Her words numbed me. Maybe I asked some perfunctory question. A few minutes later I was in our apartment, just one hundred yards from my office; Jan filled me in. She was very composed. Tom was in the hospital with a tumor, a big one. It wasn‟t in the brain, but on the brain, whatever that means. He sounded weak and frightened. She had the phone number and address of the hospital. I wasn‟t really surprised. When Tom first started telling us about bad headaches, I immediately flashed back to Eric Ehrenberg‟s brain tumor eight years before. The doctors could find nothing and referred Eric to psychiatrists, even though he was experiencing double vision and excrutiating headaches. Finally a brain tumor was diagnosed. Eric underwent surgery, chemotherapy and radiation. The ordeal cost Eric much of his sight and hearing and hormonal function. But he made a courageous recovery, finished college, completed law school, and is today married and a lawyer. His ordeal was indelibly imprinted on our psyches. Jan and I had promised ourselves that Eric‟s tumor had taught us a lesson we would never forget: take headaches seriously, don‟t take “no” for an answer, get the best medical care. I immediately told Tom to get a brain scan, or at least a complete physical examination by a different doctor. What I didn‟t and couldn‟t have realized was that Tom was too sick and too weak to deal effectively with the health system. It takes strength to get yourself to the doctor and fight for proper treatment, especially in a foreign country. The German health clinic had refused his request for a brain scan and sent him away with eucalyptus drops. Tom repeatedly assured us that he had the situation under control, that the sinusitis diagnosis was consistent with his symptoms, and that he was feeling better. I wasn‟t totally convinced. And neither was Elizabeth Pruesser, Tom‟s German house mother. Two weeks ago she had called us to express her concerns. She was very worried about Tom‟s health, didn‟t think he was improving, and didn‟t think he had been properly diagnosed. But when Tom got back on the phone, he sounded good and dismissed Frau Pruesser‟s concerns as exaggerated. (Months later Dr. Fetell told me that patients with hydrocephalus typically miscommunicate their symptoms; “they can‟t be trusted.”) Perhaps I had heard what I wanted to hear. I did want to go to our conference at La Pietra. And, of course, I didn‟t want to deal with a brain tumor. I knew it was a bit over the top to jump to the conclusion that what had happened to Eric would now happen to Tom. After all, Tom was 21 years old, in the last quarter of his junior year at Stanford, a very intelligent, experienced, and mature young man. He was in Berlin, one of the most advanced cities in the world. He was under the supervision of the Stanford people and he was under medical attention. It was easy to be persuaded or to persuade myself that there wouldn‟t be anything I could do for him in Berlin that wasn‟t already being done. In an instant, we decided that I would leave for Berlin on the first plane I could get. It took a little longer for us to decide that Jan should stay in New York City, talk to doctors here and co-ordinate Tom‟s repatriation. Sophi immediately insisted on coming with me. I wasn‟t so sure. “What about your summer school classes?”, the ones at NYU that she had just signed up for. She said she would drop them, without question, no negotiation. She was going with me to Berlin. I was relieved that I wouldn‟t be going alone. My effort to trade my airplane ticket to Florence for one to Berlin wasn‟t working out too well, and I was getting frustrated and rude on the phone with the airline representatives. Meanwhile, Sophi‟s boyfriend, Adam, got on the job, called a travel agent and connected us to a consolidator, who gave us 15 minutes to fax him a credit card and some other documentation. In an hour we were in a taxi headed to the consolidator‟s midtown

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office to pick up the tickets and, from there, to JFK Airport and the Lufthansa flight to Frankfort, where we would have to change planes for Berlin. On the plane I felt a strange calm, perhaps numbness. I thought back to the last time I had seen Tom, at the end of February. Jan and I had been on sabbatical from January 1st, 1999, and we were in our second month of a four month ski trip through a dozen western ski areas. Because the Stanford ski team competed at various resorts in the Lake Tahoe area, and Tom was captain of the team and its #1 giant slalom competitor, we had booked into a lodge at Squaw Valley for the whole month of February. There was a ski competition every weekend, each one at a different mountain. We attended all of them, cheered for Tom and his teammates, took a few runs with Tom, and took him out to dinner. One Saturday night we hosted a dinner to celebrate Tom‟s 21 st birthday, which had actually come up in January. It was a terrific evening. In fact, the whole month of skiing, weekend races and dinners with Tom was fabulous. After his last race (he tripped and was disqualified) at the end of February, we hugged goodbye and wished him well on his upcoming 4-5 months stint in Germany. The Stanford-in-Berlin program called for a ten week term of classes and then a summer internship with a company or organization in the student‟s field. Since Tom was a computer science major, he would work in the computer industry, unless he decided to skip the internship and just travel around Europe. He was leaving that option open. When we parted, Tom was bubbling with enthusiasm for the trip. Most fathers probably think their kids are the greatest. I‟m no exception. Tom is 5‟ 8” with very curly brown hair. At least in February, he looked wiry and muscular, weighing around 155 pounds. He‟s a good looking young man with a very warm and engaging personality. Tom has always been a brilliant student. In fact, on the city-wide test for admission to the prestigious Stuyvesant High School (which many people rank the number one public high school in the nation), he had scored 11th out of more than 6,000 test takers. School work comes very easy to him, perhaps too easy. He is not what I would call a disciplined student; In fact, he is often hopelessly disorganized and absent minded. Nevertheless, he did extremely well in school, especially in math and science, and was accepted early decision to Stanford. While in high school, Tom was also a keen if not a gifted athlete. He was very serious about the wrestling team and served as captain during his senior year. The Daily News once chose him as its “scholar athlete of the week.” The newspaper quoted his coach, “Tom‟s truly a leader and the guys really respect him. He‟s very fair to all the guys. He‟s got a great work ethic. He‟s not the most talented wrestler, but he‟s got a lot of determination.” Tom and I have always been very close, well maybe not so close during those high school years when he often seemed filled with teenage angst and anger. Still, we shared so many things together. We jogged, played racquetball, tennis and, of course, skiing. We have a ski house in Vermont, where we have shared innumerable weekends on and off the slopes. We like to play scrabble and often read the same books, which then become a bond between us. Stanford had been very good for Tom. The dark moods that haunted him (and us) in high school evaporated in the California sunshine. He developed a kind of California layback persona on top of his NYC sharpness. He had finally become “a party animal”. He had loads of friends and seemed to be hardly ever in his room when we called. In December of his freshman and sophomore years, he and I had taken week-long ski trips together. And in August/September leading into this junior year, Tom had met me and my college roommate, Jeff Lauren, in Japan where the three of us spent a hilarious, warm, and fascinating two weeks together, taking in baseball in the Tokyo Dome, sumo wrestling, Buddhist shrines, and lots of sushi. Now, just a few months after parting with Tom in Lake Tahoe, Sophi and I were flying to his bedside in Berlin, imagining the worst. What I couldn‟t imagine, or was too scared to imagine, was the rest of my life without Tom. Things like brain tumors happen to other people; they don‟t happen to you. As close as we had been to Eric‟s family, it hadn‟t happened to us. We were sympathetic spectators. Now we were thinking back to Eric‟s near-death experience and to the what ifs about Tom. As we talked, Sophi was very much my companion and peer. I did not have the luxury of thinking of her as a teenager. Even as a young child she displayed remarkable flashes of wisdom. On this long plane ride, she is wise, mature, and strong, chatting easily about her feelings and her fears. Sophi and Tom are our only children, just about 2 ½ years apart. Sophi had just finished her freshman year at Brandeis University. She and Tom had been very close growing up, although they had their share of blowups. Their worst fight ever had taken place at Lake Tahoe in February. Sophi had come out with a friend for one of the long weekends so our whole family would be together. Everything between Tom and her went wrong – He said she was a demanding guest, she said he was a terrible host. By the time she flew back to 22/9 8

Boston, the two of them were not speaking to one another. They had not had any communication since, all my efforts at mediation having failed. Sophi and I do not mention that fight now, although it must be on her mind. From the moment Tom broke the news of the tumor to her on the phone, there was never any reference to their feud. Sophi stayed with me, and at Tom‟s bedside, for an entire month at Berlin. She was a fountain of strength. I could not have endured without her. Karen Kramer, the Director of the Stanford in Berlin program, met us at the airport. She was warm, sympathetic, and professional. She chatted with us about accommodations, insurance, and Tom‟s situation The Neurosurgery Unit at the Rudolph Wirschow Klinic at the Charite Hospital was neat, clean, calm orderly. The hospital itself looks like a university campus. The three and four story buildings sit around the perimeter of a huge green pedestrian avenue (perhaps quarter mile long and 50 yards wide) dotted with benches . There were fruit vendors in front and ice scream vendors along the quadrangle. It was the most beautiful hospital I had ever seen. It radiated organization, competence, and cheerfulness. Or at least that‟s what I wanted to see. Tom‟s “cousin” Nick met us in the corridor, hugged us and offered a brief report. Within minutes we were at Tom‟s bedside. He had tears in his eyes. I think they were tears of relief and happiness at seeing Sophi and me. He kept thanking us over and over for coming. He looked very weak, but he was mentally keen, alternating German to the nurses and English to us. He was hooked up to an I-V and there were tubes coming out of his head. The doctors and nurses periodically checked his eyes. He told us that he was not in pain. He was even able to make some jokes. We fed him some fruit that we picked up from the vendors outside. The young German doctor, whom I took to be a resident, was tall, thin, handsome and warm. After giving us a minute to hug and kiss, he brought the MRI‟s to Tom‟s bedside. He pointed to a large lightly-colored mass right in the center of Tom‟s head, calling it (in English) a “massive tumor in the third ventricle”. Yes, it would have to be removed, absolutely. No, they didn‟t know what kind of tumor it was, but it was rare; diagnosis would have to wait till after surgery when the tumor could be analyzed in the laboratory. Yes, they could remove it. The headaches and malaise were the product of hydrocephalus, fluid build up in the brain caused by the tumor‟s blocking the ducts through which brain fluid moves. We stayed with Tom the rest of the day and evening, taking turns to call Jan, and friends and family at home and in England. Jan is from Birmingham, England. Her mother, Billie, is Tom‟s only living grandparent. Breaking the news to her was very difficult. When we left the hospital 8:00pm, Tom seemed comfortable and calm. I told him, “You‟ve been very sick and almost died. Now you are at the beginning of the road to full recovery.” Tom quietly asked me if I would tell him if he was going to die. I asked him if he wanted to know everything. He nodded. I promised that I would hold nothing back. The doctor had said nothing about dying. The tumor was operable. Sophi and I laid in touching twin beds in the guest house on the hospital grounds. Sophi cried some. We held hands on and off during the night. Now and again we uttered our deepest fears. More often we struggled to articulate and reinforce all that was positive about the situation – Tom looked okay. The hospital was impressive, as were the doctors and nurses. The tumor was not on the hypothalamus or on any vital part of the brain. The tumor was operable. We would not know whether it was malignant or benign until the pathologists had a chance to study it. Eric had survived his tumor. There was plenty of reason to be hopeful.

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Chapter 5: From Irrationality to Rationality
The nurses prowl at night, wake me up, pull open my eyelids, and shine a flashlight at each eye, sometimes moving from eye to eye, back and forth, until the tears come and my head feels like a basketball. I feel like a science experiment. They scribble a few notes, nod knowingly. Apparently, my eyes are to there liking. Then they ask me the three questions. The three questions are part of my hospital routine. During the course of my hospital stays here at Charite and later at New York Presbyterian, I have to answer the same pestering inquiries hundreds of times. If you‟re having brain trouble- concussions, brain damage, or in my case, hydrocephalus, doctors and nurses ask the three questions, always in the same order, to make sure that you are still cognizant. It gets so repetitive, that when the doctors start, I often recite the questions and the answers like a mantra before the doctors even before the doctors ask them. Question one: “What is your name?” I never have trouble with this one. Can‟t stump me there, I know that I am Tom Jacobs. One time, I dreamed I was just pretending to be Tom Jacobs. I woke up and gave the name of Steven Dobson, the secret agent character in my delusion. The nurse who asked the question looked puzzled and worried. When she asked again, I said Thomas Jacobs. I could see her face relax hearing the proper answer. I asked myself: Is Thomas Jacobs really my name? The answer: Probably, but in any case, it is the right answer as far as the nurses are concerned. Question two: “Do you know where you are? I do pretty well on this one too. I can always come up with “hospital”, the proper name doesn‟t always come to me. Charite – got it. Question three: “What is today‟s date?” You‟ve got to be kidding. I have absolutely no idea what day it is nor how long I have been in the hospital. It could be a week, a month, or longer. Tonight, the brain is engaged, and I confidently say, “May something.” How‟s that for brain function? The recitation of the three questions reminds me of the four questions at Passover. At the seder to celebrate the Jews‟ freedom from Egyptian bondage, the youngest child capable of reading English and memorizing Hebrew asks the four questions. It‟s quite a big moment for a little boy. I remember my first time; I was so nervous. I had started to pray every night, and sometimes during the day too- anytime I wasn‟t sleeping or eating, I was thinking about the brain tumor, trying to figure out how I could survive. Eventually, I accept that I am totally in God‟s hands, and that only God will decide what will happen to me, whether the tumor will be operable or curable, whether I will die here alone. Maybe this is a religious test of faith, like Job in the bible. Perhaps I am a modern Job, and all I have to do is believe, supplicate myself before God, and ask for mercy. This I do nightly through flowing tears and dark thoughts about how inescapable my fate is. “God, I promise you: If I get out of this, I will lead a much better life. I will love my family. I will treat them all better. I will love everyone and everything around me. I have experienced misery now, I have felt what it is like to suffer, and I know you have the power to decide my fate. All I ask is for another chance – I don‟t care what it‟s like, you can cripple me, make me blind or stupid, but please give me another chance. I promise I will not squander it.” I worry that God does not hear me. Perhaps he or she does not listen to “mere mortals”. But lying in my bed, I can feel God‟s presence and I know that the deal will be considered. I am too afraid and excited to sleep. I am so anxious to see my family. They represent all the hope I have left. “My family” has taken on mystical properties, like the holy grail. When they show up, I can hand over my worries . Once they get here, I will be able to survive – no, not just that, I will be able to believe that I can survive. My paranoia begins to set in again. I am not entirely sure that they really are my family. What if my family is an illusion conjured up by aliens to control me as they perfect the brain they intend to harvest. Do I really know that my parents exist? Do I really know that the man and woman who call themselves my parents really are? Aliens could easily have deceived me. I struggle to expel this thought. I know it is crazy, but I cannot get rid of it. This whole experience is crazy. How can I be sure that my family is not fake? How do I know if anybody is really co ming? If I am not Tom Jacobs, who am I? If Jim Jacobs and Jan Sweeney are not my parents, who are they? I need help. I 24/9 8

understand that I am being tested, but please God, send me some sign that I am not crazy, and that reality is the way I always assumed it was.. I doze. When I look up, there is sun shining through the windows. My parents should have arrived by now. I call the nurse, and ask if my parents have arrived. “No”, she tells me, “Not yet”. She will let me know. That doesn‟t stop me from asking the same question every hour. Maybe they got lost. Maybe they couldn‟t get tickets. Maybe they‟re not coming. They promised they would, but I‟ve had so many disappointments. I couldn‟t survive their not coming. It would be too much! I wait anxiously the whole day. Noon, one, two; I become frustrated, then tense, then angry. By 4:00 PM I am becoming morose. “They‟re never going to come. Another blow, the worse yet. How did my life go from so wonderful to unimaginably bad so quickly? I‟ll die here all alone. I start to cry. And then they walk into the room. I don‟t remember if I first saw them, or heard their voices – probably the latter. They are here; Dad and Sophi. The dark cloud floating above my head is lifting. I am elated, and my eyes start to tear and spin in my head, as my tongue hangs out of my mouth. I start to cry even harder, as they came over to the bed, hugging and kissing, holding my hands. In my entire life, I have never experienced a greater jump in emotion. Before they arrived, I was absolutely miserable. Now that they are here, I am giddy and exhuberant. I want to jump out of bed and shout for joy and sing at the top of my lungs; I want to run, climb, and do all the things that make me happy. They are going to take care of everything, and I will get the best possible treatment. I‟m going to make it. Instantly, I go from despondence to exaltation. I am going to be alright. Thank you God; thank you for hearing me, and delivering my dad and sister to me. I promise I won‟t forget my part of the bargain. “Where‟s mom?” “She‟s not coming.” Shock, silence, disbelief. When I had called home to give my family the news, her first instict, like those of my father and sister, was to go to Germany to rescue her boy. But very quickly, her analytical side took over again, and she thought about the need to find the best neurology (surgery and oncology) team in New York, since I would probably have to fly back to New York for surgery, and I might need cancer treatment after that. So she decided she would stay in New York and find the right doctors. I can‟t imagine the strength that it took for her to do this. While it must have been hard for my father and sister to fly to Germany on a moment‟s notice, with terrible anxiety about what they would find, and then to see me in the hospital with tubes coming out of my head, so weak that they had to help me eat, it must have been a hundred times more difficult for my mother to say, “you go. I will stay and make sure everything is ready in New York.” She would have to rely on phone calls. She would not be able to see me, hold me in her arms, or be there for me except in spirit during these crucial hours. She put her needs to the side, thinking only of what was best for me. Dad and Sophi shout my name and bend over to hug me, looking at me through eyes that I could tell had been crying and looked like dams ready to burst. They each hold a hand, trying desperately to transfer health and energy to me. But they do not cry, telling me how great it is to see me. They say I don‟t look so bad, and that I will definitely get better. My father must be erupting inside seeing his scholar/athlete son reduced to a shell of his former self. It must be a shock, even though he had been visualizing my predicament, seeing me like this, my head partially shaved, tubes coming out, my body frail and withered, 20 or 30 pounds lighter than the last time he had seen it. Yet he remains strong and solid, smiling and radiating a positive attitude. He never shows the fear and anxiety that must be there. I‟ve never been as happy to see anyone as I am to see them. It is the happiest feeling I‟ve had in a long, long time. “Wow, they really do exist!” I think, “It is so great to have them here, to be together with the people I love and trust. I don‟t have to question whose side they‟re on. I won‟t have to fight for my life alone.” I pour out my paranoid story about fearing that I had been kidnapped by aliens who were trying to use my brain fluid for science experiments. While it seemed ridiculous, my world up until just a few moments ago was so completely alien and strange compared to what it had been before that, it seemed possible. Dad laughs. Sophi reassures me that I‟m not in an alien spacecraft, but in the best hospital in Berlin, probably in Europe, and that I am going to make it. These wonderful words are an elixer. I‟m coming back to life. I can make it. The paranoia fades. Their smiling faces and overwhelming love spark confidence. The lights in my brain are turning on now, the show in there is not over yet. As we talk, my confidence grows and I‟m rational. They easily convince me that I really am Tom, they really are my family, and that I really am going to make it through this alive. No – I will do better than just 25/9 8

survive, I am going to make it through this, and eventually, everything is going to be just the way it was before. Dad keeps telling me I‟m at the beginning of the road to full recovery. I hear this over and over again, and whenever doubt starts to move through my mind, he tells me again. A tall good locking doctor enters the room holding a file, and indicates he wants to talk to us. He shakes hands warmly with my father and sister, apologizes for his English, which is fine, and talks about my situation. We three stare at him, hanging on every word. The doctor confirms that I have a brain tumor. The question we are too frightened to ask is whether the tumor is operable. We are spared from having to ask because the doctor tells us that it is, or at least they think it probably is. We all breath a long sigh of relief. I was not going to die without a fight. Now all I have to do is make it through brain surgery. Tough, but doable. “That‟s music to my ears”, I tell my smiling dad and sister. “It makes me want to dance.” The doctor continues. The tumor is in the 3rd ventricle, a fluid sack that normally lies flat. The tumor is massive, so big that it blocks fluid drainage, causing backup in my cerebral spinal fluid system, swelling the ventricle to a massive size, and creating pressure on the rest of the brain. The condition is called hydrocephalus and it accounts for the fatigue, headaches, dizziness and everything else. The tubes I have coming out of the top of my head are an external drainage or, I think, with black humor, a “brain drain” The doctor then lets us in on some good news. The tumor is in the brain, but is not eating away parts of the brain. This tumor is not impinging on essential brain structures like the hypothalamus and pituitary and it does not affect brain function. They can pick the most advantageous route do the surgery – frontal, lateral, or posterior, and should be able to remove it without interfering with my personality or cognitive functions, and without injuring my pituitary which would require hormone replacements for the rest of my life. They don‟t know if the tumor is benign or malignant yet, and they are not certain what its histopathology (the type of the tumor, what caused it, and how long it has been there) is. I am happy. Contrary to my initial fears, this tumor is definitely operable. I will not have to have much brain removed – a little just to get to the tumor site, and the tumor itself is not brain material. I should be (or could be) fine. All this contributes to soaring spirits. My family is here; I‟ll be okay. Dad tells the doctor that we need a few days to think about our options. The doctor nods understandingly. That will be ok. “Aber sie muessen in die nexte paar tagen entsheiden.” He tells us. We must decide soon. Dad and Sophi are kicked out about 8:30 pm, probably utterly exhausted physically and emotionally. “See you in the morning, Tom. Sleep well.” “Do you promise dad?” I whined pathetically. “Tom,” he said, “you are the most important thing in my life. I‟ll be with you as long as it takes. I won‟t leave Germany without you. We‟ve got the diagnosis. Now, we move to the treatment phase. You‟re at step one on the road to a full recovery.” I start to cry again.

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Chapter 6: Battling The Nighttime Demons
A shudder runs through me, anticipating the long hard night to come. Since the brain drain I have hardly been able to sleep. This night, I fear, will be no exception. I will sleep only when exhaustion takes me, and then only for a few hours. I turn to a book on my nightstand, and confirm yet again that I cannot read because my eyes are not working well enough, and my head throbs too much. There is a TV, but I can‟t turn it on, and even if I could, I wouldn‟t be able to follow it, for the same reasons I can‟t read. A few times, I tried watching TV during the day, but it left me in tears. It is too painful to watch people going about normal happy lives. I used to have a life like that, but that life is just a dim memory. It hurts to be reminded of the everyday life that goes on out there. Rollerblading, frisbees, skiing, anything but lying in bed every day all day. I glance around; my roommates, Rudy and Paulo are asleep or dozing. Rudy is a German man in his early thirties who entered the hospital with heart trouble, only to have a brain tumor discovered. He has survived both surgeries, and is recovering well. Paulo is an Argentinean who fell out of an upper story window on his head. Now he can‟t talk and shows no awareness at all. Perhaps he will recover, but during my time here, he has not improved. His mother, who speaks only Spanish, spends everyday nursing him. She‟s sweet. Sometimes she walks over and gives me a hug and a kiss. I cannot disturb them. They do not suffer as I do from sleeplessness, periodically mixed with horrifying nightmares starring demons trying to trick me, telling me that I‟m not even in Germany at all, that my whole perception of reality is, in fact, just part of the dream. Evening drags on. The nurses change my sheets, which they somehow do with me still in the bed. They give me a little wash since, with the tubes, I obviously can‟t take a bath or a shower. Finally, they help me brush my teeth, and as I get into bed, the lights go off. I lie in bed, staring at the ceiling. Sleeping on my back is not comfortable. It puts pressure on my brain drains and that makes me worry about inadvertently pulling out the tubes, so I roll over on my side and stare at a wall. I am wide awake, thinking about whether to have brain surgery here or in NYC, analyzing all the options and, in frustration, ending up back at square one. I know I will get nowhere thinking about this; I‟ve already approached this from every angle, and there are just too many unknowns, but it is something to do, something to think about, the only thing to think about, until I hit the point of exhaustion and slip into the clutches of the nighttime demons. I glance at my nightstand clock, 9:21 PM. Please God, let the hours move swiftly. Please let the darkness and the dreaming be over, so that morning and my family will be here. The all encompassing darkness, silence, and loneliness dissipate all the strength I had derived from the daylight, and the warmth and love of my dad, sister, and visiting friends. I am cold, alone, and sorry for myself. Will I ever get out of this hospital? Will I ever see the outside world again, or is this it for me, what remains of my life will just be the hospital, nurses, doctors, and worried visitors. “Stop it,” my brain screams, “you‟re going to get out of here. You‟re going to make it. Just be strong in mind, and you can will the body to obey. You can – you will will your body back to health.” I stay composed, maybe because I am too tired and exhausted to cry. I start to stroke my stubbled face. I haven‟t shaved in about a month and my face is very scraggly. When I look at myself in the mirror here, I do not recognize the face staring back. I could swear that those are not my eyes. They are bluer than ever, but look glazed over, like a child getting off of a big rollercoaster. They are the eyes of someone paralyzed mentally by fear. They are timid, swollen, and above everything else, incredibly tired. That can‟t be me. “I‟m not going to fall apart now,” I tell myself. “I must remain sane here. My brain is betraying me, but I must be as psychologically and emotionally strong as possible. The doctors can take everything else away from me, and they can tell me I have a brain tumor, that I am in critical condition, and that I need these tubes running out of my head to stay alive, but I still have my mind, and they cannot take that away from me. I will not allow it. I wonder what would happen if I pull the cords out of my head. Would it be easy? Would it hurt? Would I die, or would it be no big deal? I wonder about this a lot, but I do not really want to try it – yet. When the doctors tell me they are helping me, I am distrustful, but not so much that I am willing to do something that might kill me. I am not that paranoid, but I wonder if the doctors are just lying to me, using me in some grand, evil scientific experiment. Maybe if I pulled the tubes out, I could just walk out of the hospital and be fine. La di

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da. I hope so, and I try to persuade myself that it is so, but in my heart, I know that such a move would be very bad, maybe fatal. I start thinking back to being washed. It‟s funny that when they clean me with a soap sponge and change my gown, they make my family leave. Why? To preserve my modesty and dignity? I have a brain tumor, and the least of my problems is remaining modest, indeed, I don‟t give a damn about modesty in front of the people who gave birth to me, bathed me, watched me grow up, and have seen me naked hundreds of times. Dignity? A patient brought low by a brain tumor doesn‟t have much of that. But the hospital policy is that the patient‟s privacy must be respected. I role over to the other side and watch the wall. There is a weird shadow that looks like a „W‟ or an „M‟. I think it‟s a „W‟, but what causes it? Is something special happening tonight? From my bed I look out the window, but I cannot get a full view. Damn! No way I‟m getting out of bed to figure it out. It looks like the „W‟ is the beginning of a word that lights are beaming into the sky. If I only knew what the full image was, what the other letters were… I struggle to figure out whether there‟s a message out there for me. Is someone flashing me a message from the outside? Crazy, I know, but crazy things have been happening to me. What does „W‟ mean? Wait? Watch? Worry? I realize I must be paranoid and crazy, but I can‟t help it. I continue watching the „W‟. How long, I do not know, but it feels like hours and hours, longer than I‟ve ever looked at something before in my life. I keep betting that the sun will start rising soon, but as I wait and watch, no morning light appears. The night sky remains the same – cold, foreboding, frightening, and isolating. I know that I am the only one in Berlin still awake right now. The aloneness is terrifying. I turn over again. The monitors next to my bed are buzzing brightly. I can‟t really see the screen, but the colors and patterns seem to swirl, like oil in water, thick at first, then diluting and wavering top to bottom, side to side, and finally all but disappearing. I wonder what they measure. I compare the monitors to my heartbeat and pulse; there does not seem to be any relation. I would love to lean over and read it, just to make sure, but I do not have the energy for that, and even if I do, I am too scared to find out what it would tell me. I think it might be some alien code – a language of some sort that I cannot read but that the nurses, who are either aliens or the aliens‟ allies, can read. Impossible? Maybe. But there is no other way to explain all that swirling and churning. They are stealing my brain fluid, telling me that I am sick, and all the while, keeping me in this “hospital”, actually their space ship. They are taking me back to the mother station where they will do more experiments on me, and eventually, they will dissect me and kill me, amidst tremendous pain. Well fuck them. I‟m not going to sit by and let that happen. I‟m going to kill myself first. I‟m going to kill myself right now. I‟m going to… Stop it, I tell myself. You‟re in meltdown. Your brain isn‟t working. (But isn‟t that just what they want me to believe?) Just hang on, get to tomorrow, and you will see. Sophi and dad will tell me (but they‟ve been fooled too! Or maybe they‟re aliens?) that I‟m not on a spacecraft. I can‟t kill myself now, not while there‟s still hope. I hope. I hope I can get home. I hope I can get through this. I don‟t care if I‟m stupid or crippled after my surgery, just please God, let me get through it. Whatever life I‟m left with, I promise you God, I will love and cherish it. “It‟s funny,” I think, “the thought of suicide was so unthinkable to me 3 months ago, before the headaches started, and now here I am, seriously considering it, and determining the conditions under which it would make sense.” As I think about how far downhill I‟ve come physically and mentally, my hand plays with the tubes in my head, exploring the connections, and the tears start flowing. It isn‟t a terrible, sobbing cry; I do not have enough strength for that, and even if I did, I‟ve cried so much, that crying itself seems banal. It is a quiet, scared sob. I want is to get home. To see the outside again. I‟m not sure that‟s ever going to happen. I close my eyes and try to sleep, but when I do, I see the brain tumor, large and menacing, looming above all the other images in my dream. If it is a landscape, the tumor is in the sky, like an enormous asteroid. When my friends are in my dreams, the tumor is a dirty, sound proof wall all around me. Whichever way I run, it grows and shifts to block me. I watch my friends as they search for me, but they cannot see through the wall. Eventually they leave and I am alone. Dad told me I should try visualization, and when I picture the tumor, I should visualize phalanxes of white knights with lances battling the evil tumor. “Visualize the tumor being cut up and killed, over and over again” is what dad told me. I wish it were that easy. Often, the entire dream is the tumor. I see how it is growing, faster and faster, trying to kill me. In my dream, the tumor has a face, but it doesn‟t speak, despite my efforts to communicate. When I ask it to please stop, please don‟t kill me, its mouth shapes a terrible, malevolent smile; its eyes narrow. It starts to brighten or

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turn another color, and continues growing, its little tentacles inexorably grabbing all the brain it can reach. It smiles because it knows it has all the power, that I am its helpless victim. It intends to kill me. I awake sweating. I have no idea how much time, if any at all, has passed since I dropped off. The sky looks a little brighter, maybe. No, it was just a trick my mind played on me. The sky is the same color it was the last time I looked. Day is no closer. I begin to wonder, as I do every night, if this night will ever end, or if it will go on forever. I drift off. This time, my dream takes me to the controls of the alien spaceship. I see them carrying fresh beakers of my brain fluid, alternately drinking it like an expensive beverage and testing it the way aliens do on television, stirring it up, extracting specific pieces, and looking at them under a microscope. These aliens are a sickly green yellow, the color my imagination has given the tumor, and as they suck on my brain fluid, they grow larger and meaner. All of a sudden, one notices me, and in a split second I am engulfed by them, and they are ripping me apart. I wake up screaming and sweating. I know that I will not get back to sleep now. I am not tired enough anymore, and I am way too afraid. I lie awake in my bed, watching my monitors, wondering what the big „W‟ is, and trying to reason with myself that this cannot possibly be an alien space ship. I start to think again about how wonderful my mother is. How much strength she has given me, and how wonderful it will be to see her again soon. I always knew she was wonderful, but until the hospital here, I didn‟t know that she was a saint. She and my dad and my sister have … “Good morning, Tom. How‟s it going?” I blink back to reality. The night is over and dad is at my side. Thank God. A smile comes to my face for the first time in a while. I say, “Hi dad, it‟s good to hear your voice. I‟ve missed you.” “You look pretty tired.” “Yeah, I am. I didn‟t sleep very well last night.” “Was? Thomas? Schlaffen Sie?” That didn‟t sound like my father. I open my eyes with a start, and look frantically for my dad. He is not there. It‟s a male German nurse, bent over me to make sure I‟m ok. My dad is not in the room. I could have sworn he was here, but I guess I was just dreaming, and I must have been talking in my sleep. I look outside, still night, but definitely brightening. I sigh. That seals it, he wasn‟t really here. I feel like crying, but I don‟t. The nurse takes this opportunity to check my eyes again. God, I hate this. It‟s 5 or 6 in the morning, and he‟s got to pry my eyelid open and shine the damn light. What is the reason for this? Is it some kind of hypnosis thing? A power trip? I want to beg him to go away, but it won‟t do any good. The guy is programmed to act this way. In a minute, he is gone, and I am alone again, awake, tired, and so very lonely. I really wish I could be anywhere but here. Anyplace else would be better. This is torture. I have a dim sense of a very frail body. I feel like a newborn child. I want someone to take care of me. The sun finally starts to rise, and I sigh with relief. I have made it through through the night. The insanity lifts with the rising sun, and I feel confident that I can make it through one more day. I‟ll just get through today, and then the next, and I‟ll just keep doing this until I can get out of here. Even after the sun rises, it is a long wait for my family to show up. I know the hours they open up to visitors, and when my sister isn‟t there to give me a big hug, I start to worry. I wonder where she could be, where they could be, and I start to wonder if I have only dreamt that they are in Berlin– I could do that, with all of the crazy dreaming I‟m having. I wonder if they‟ll ever show up. “Mogen, Tom. Wie geht‟s?” Morning Tom How‟s it going. It is dad, speaking his ridiculous German, which couldn‟t be worse, but it‟s music to my ears. “Papa; es geht.” I have survived another night.

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Chapter 7: The Big Decision
Should I have brain surgery here in Berlin or fly back to New York City? We sent the MRIs by Fed Ex to mom in New York. After a whirlwind of information gathering, mom is convinced that I should be operated on at New York Presbyterian or Beth-Israel, because of the specialized expertise of the neurosurgeons. But I would have to get home first – not an easy task, especially considering that there are no direct commercial flights from Berlin to New York City. Presumably, an ambulance would take me to Tegel Airport. I would then fly 1st class with nurses in attendance to Paris or London, change planes, and fly on to JFK Airport, where I would be met by an ambulance that would take me to the hospital. Before I could fly home, the hydrocephalus would have to be treated in a way that I would be safe for a couple days, and so a loss of cabin pressure at a high altitude won‟t aggravate the problem. The standard procedure would be to insert a plastic “shunt” into my brain. The shunt would bypass the tumor, draining brain fluid somewhere where it would not cause a problem, most likely into my stomach. The German doctors say there is some risk that cancer cells could enter the shunt and spread cancer to another part of my body. Moreover, once implanted, the shunt would probably be permanent, always carrying a risk of failure and/or infection, a serious problem. Mom believes the risks are manageable; she says brain tumor patients routinely have shunts inserted so they can be flown to big city medical centers. When it comes to this decision, I don‟t believe in numbers. This is my life here! I am confronted by a bewildering array of plans, every day a new one, with different risks and tradeoffs. Surgery, shunts, med-e-vac-ed. All of them have numbers: How many live, how many die. I want to have surgery in Berlin. I want to be done with all the thinking and waiting and guessing. If something ever went wrong with my shunt, it really would be the end for me – either massive brain damage, or death. Can I live the rest of my life like that? I don‟t want to have anything in my head that‟s not supposed to be there. I want the tumor removed, not a shunt inserted. Dad and Sophi lean towards staying in Berlin – our Berliner friends, including Karen Kramer, are full of praise for this hospital, as are many of the other folks we‟ve met in Berlin. It certainly looks impressive, absolutely clean and orderly. The nurses are very professional, and most importantly, Dr Lanksch, the head neuro-surgeon, impresses me. “He looks like Doctor Evil!” I whisper to Sophi and Dad; they laugh. He really does look like doctor evil from the movie “Austin Powers” – bald, round faced, large blue eyes. Tall and distinguished, he exudes confidence. He discusses the attack on the tumor calmly, professionally, confidently. He is unfazed by the size and invasiveness of the tumor; he is confident that he will be successful. I am inspired by his confidence to think that maybe everything will be alright. Slowly, I start to pick up the shattered pieces of my psyche and self-preservation. Inch by inch, I start believing in myself and my life again. He makes me believe I can live. I can press on my eyeballs and feel brain fluid squirting around my head, exiting through the external drainage. I keep running through the possibilities. Can I make it back to the US? I think so. Is it the best way to go? I don‟t know, I just want something to change. I am tired of being sick, in the Critical Care Unit. I just want it out, and I can‟t wait any longer. I don‟t think I the trip home can possibly be the best option. I am too weak to do anything, and walking to the bathroom and back leaves me needing a nap to recoup. What if something goes wrong while flying over the Atlantic Ocean? At best, the whole trip would be a terrifying nightmare, and would sap all the strength I have and a lot more. I am afraid of brain surgery here, but I worry that by the time I get back to New York, I will be so worn down that my brain won‟t be able to survive the trauma. I try to picture myself going home, eyes dizzy and blurry with the swelling in my brain, half-awake and half-asleep, living in a dream world. Nurses are asking me those three questions. “What is your name?” “Do you know where you are?” “I‟m Tom. I‟m at 30,000 feet” I would say. They would shine flashlights in my eyes. They would take my blood pressure every 15 seconds. In this state of complete physical and mental exhaustion, I would make a trip that would make many healthy folks ill. What are the risks of having brain surgery in Berlin? First, we don‟t know anything about Doktor Lanksch, except that he looks suspiciously like Dr Evil. While the hospital is universally praised, we haven‟t made contact with anyone who can vouch for Dr. Lanksch‟s reputation. That he “looks” impressive is an inadequate observation on which to make a life and death decision. Will it matter to Dr Lanksch that I‟m Jewish? If so, will it motivate him do a better or worse job? If he‟s anti-Semitic will he let the scalpel slip, or will he try to make an all out effort as a way of atoning for the holocaust? Does this question even matter anymore?

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I do not hold the Germans today accountable for what the Nazis did sixty ago. Individual Germans today are no more guilty for the concentration camps as am I for the internment of the Japanese during the same war. I have German friends in the United States, as well as Germany and elsewhere in the world. I respect and value these friends as I would any other friend. I have been to Germany before in high school, and the “character” of the average German in the street seems to me, in all my experiences, to be exactly on par with other nations. I would not have come to Germany to study if I was passionately mad at and distrustful of Germans. However as a culture and a nation, Germany must always remember the atrocities that were committed in the name of nationalism. What the Nazis did can never be forgiven, but the German people today should not carry the burden of their country‟s history, as long as they must carry the memory of their fathers‟ and grandfathers‟ anti-Semitism in their psyches. Today, Nazism (and Neo-Nazism) is no longer just a German problem. I believe that what happened in Germany could also happen anywhere, even in the United States. After all, look at the genocide perpetrated on Native Americans, not to mention the slavery of African Americans, or the internment of Japanese Americans during World War II. Anyone who disagrees with me should see the movie, “The Siege”, which portrays New York under marshal law, the army rounding up Arabs into concentration camps and torturing prisoners to death. Maybe we‟re not near a holocaust, but terrible things can occur when the circumstances are right [wrong?]. The riots against the Jews in Crown Heights for 3 days in 1989 – the police held back, no one did anything. Mayor Guiliani called it a pogrom, alluding to the state sponsored terror against Jews in 19 th century Russia and Poland. Meanwhile, ethnic cleansing goes on every day in the world, sometimes in very modern, “enlightened” cultures. The Japanese have almost totally whipped out the Ainu, the native inhabitants of Japan who over thousands of years have been denied the rights and status of “regular” Japanese, whose ancestors came from mainland Asia. The German people, should carry the memory of the holocaust forever. It is a small price to pay in the consciousness of a people when compared to the horror, death, and decimation of Jewish people and their culture. In turn, we (Americans) need to remember the horrendous atrocities and the millions of casualties from war and disease that were a result of European colonization. Since the first human picked up a rock and said, “this is mine. It belongs to me. This land is mine, and everything in it”, human history is a story of subjugating other human beings for the purpose of advancing individual or group goals. From slavery, to the holocaust, to the ethnic cleansing that has been going on between the hutoos and zutoos in Africa for years, and more recently, the situations in the former Yugoslavia (a former “modern” country) and Iraq (the liquidation of Kurdish settlements and ethnic cleansing of the entire country) are proof that this sort of behavior is only going to continue. In my opinion, the Holocaust was the greatest atrocity ever committed against a group of people, because of its scale, and because the Jews, before 1933, were somewhat integrated and recognized members of German society. The Germans at least recognized their humanity. But ethnic cleansing continues today, even in the United States, which continues to try to poison Indian communities by lowering alcohol and cigarette taxes for reservations. The question of ongoing Neo-Nazism is one I wanted to examine while in Germany. How much responsibility does the average German bear? For the older folks, what was it like during the Third Reich, and afterwards under occupation? How they feel meeting and interacting with Jews today? I found more knowledge of Jewish tradition, World War II, and Nazi atrocities in Germany than in the United States, where U.S. failure to accept Jewish refugees or to bomb concentration camp railroad lines cost hundreds of thousands, maybe millions of lives. My gut feeling is that surgery here at Charite is the right decision. I‟ve got to have brain surgery whatever I do. The shunt and the flight just compound the risks, and the complicated logistics are intimidating. While dad says it‟s my decision, he and Sophi clearly favor staying put. Mom adamantly believes that I should have surgery in New York right away, but I just don‟t think I can make it back. What if the whole tumor isn‟t removed? What if some critical brain section is damaged, leaving me physically or mentally handicapped? What if I go into shock and die in the OR? What about the risk of a secondary infection? No one can tell us for sure how different countries‟ brain surgeons compare, but I‟ve always believed that the American doctors are the best. I wonder now if I‟m being unfairly chauvinistic? Dr Lanksch is a general neuro-surgeon, who operates on accident victims as well as tumor victims. Dr Bruce at New York Presbyterian deals only with brain tumors. All things being equal, I‟d probably be better off at home. But they‟re not equal. Could I survive the trip? Henner Hess, a German sociologist and close friend of dad‟s, arrives from Frankfurt. I‟ve known Henner for years and once visited his him and his wife, Katja in Heidelberg. I know he loves me. Professors in Germany have a lot of prestige, so having Henner on our team helps to get attention. During the day, he calls 31/9 8

friends and doctors, anyone who might be able to help us sort through the question of whether to undergo surgery here. At night, he strolls with dad, often until one or two in the morning, talking to him, soothing him, and helping him think through the big decision. The German doctors are very confident of their abilities, and the young residents speak glowingly of Dr Lanksch. But maybe all aspiring surgeons feel that way about their mentors. The surgeons in New York have big reputations, but America operates on a “star system” much more than Germany. The reputation of the German medical system, neurology in particular, is very good. The chief surgeon at Germany‟s top neurology unit must be VERY GOOD. The doctors could offer no advice for what the chances for success either way we decided would be. This kind of tumor in a person so young was so rare that there is nothing statistically to go on. All we have is a gut feeling. The hours roll by, information keeps coming in. There are many conversations with mom, and I can see dad getting stressed out. My mind is setting. Nothing is changing my mind. I still don‟t see how all the risks of flying back to the US – surgery to get the shunt in, flying back with my brain in such critical condition, changing planes, meeting new doctors, and having brain surgery anyway, when taken together, could they possibly be less than what was risked if I decided to stay here? As I roll these same questions around in my mind, over and over like a tumble dryer, I think to myself that it is appropriate that less than 60 years ago, the Germans were in the process of gathering, interning, gassing, and incinerating Jews. Now they are doing everything possible to save my life. There is a reason I was here when I got sick; the Germans are supposed to do the surgery, save my life, and make a small reparation for the damage done in another time. I haven‟t left my hospital room in long time; how long, I can‟t say. The draining system is so delicate that going to the bathroom and sitting up for meals are major challenges. The nurses like me to eat at a table, rather than in bed, but just getting out of bed is a major procedure, and their assistance is required. Whenever I want to get up, they must adjust the controls on my drainage device, switch off my pulse monitor (otherwise it makes a horrendous beeping sound when I take it off), unclip the cords for the machines monitoring my heart rate and blood pressure from my chest. Finally, I can roll out of bed, being careful not to pull my head in such a way that it would pull over the stand where the tubes are draining. Finally, I shuffle over to the meal table, pushing the stand with my brain fluid in front of me, careful that it doesn‟t rip out of my head. I sit in a chair, and the nurse once again readjusts my brain drain system. The same procedure is necessary when I want to go to the bathroom. By the time I sit down, after 10 steps, I am wiped out. And Mom thinks I can travel home? To get out of bed, walk down stairs, get a cab, go to the airport, fly back to New York, stopping to change planes at least once, take a cab from the airport to the hospital, and then undergo brain surgery (breath!)? Technically, the decision is mine, but really it is my family‟s. I do not trust my brain enough with the hydrocephalus and the tumor interfering enough to be confident in my own decision, so I want my family to make the decision and take care of me. Friends all around us are trying to help us with the decision. Everyone we talk to tells us that they have confidence in the German medical system, especially in this hospital. Frieder Duenkel, another of dad‟s German colleagues and friends, is also calling his people to gather information on the reputation of the hospital and Dr Lanksch. Everyone he and Henner talk to think it is better to stay in Germany. Probably my main reason for wishing to stay in Berlin is that I just want the tumor out as quickly as possible. I am scared, worried, frightened, and terribly confused. The confusion of the past months, the endless nightmares I had when my parents and friends left, I know that I have very little sanity or will to live left. I want that thing out of my head so I can go on with my life, just like it was before. This is a nightmare world. When they operate, something will change. Either life will get better, or I‟ll be dead. Even before my dad came around, Sophi was firmly on my side. She understood my desire to get the tumor out as soon as possible, and also worried about the trauma of a cross-Atlantic flight. She liked the hospital and the staff. This is the most advance country in Europe. The German surgeons can do it. Why take on added risks? Every two or three days, Karen Kramer, the Stanford center director, came to visit me. In her mid-50s, with Brown-Grey hair and a calm face, she was a picture of good sense. We would talk, and she would always tell me that I would make it through if I just kept my spirits and hopes up and believed in myself. I asked her opinion about the surgery. “Well,” she said, “if you were my son, I would want the surgery to be done here.” Maybe she didn‟t have much to go on when she ventured that opinion, but it made a profound impression on me. Karen Kramer, my guide to Berlin and Germany, has not only said that she would tell 32/9 8

someone else that brain surgery in Germany is the right thing to do, she has said if it were her child, she would choose to stay for surgery. She could have made a non-committal response, something that she could live with in case it turned out to be bad advice. Instead she gave her opinion, which eventually became our opinion, strongly and unwaveringly. If I were her son, she would keep me in Berlin. She must have realized the importance of her advice. She had no reason to put herself out on a limb like that, except my best interest. She really cared about the students in the program. This kind of human kindness was incredibly moving to me. It is one thing for a person to care about you when you are well, but when you are sick, that‟s when you find out who your real friends are. Instead of shrinking away from an opinion, Karen had decided that she would speak her mind, try her best to save my life, and live with the consequences. She barely knew me, yet she stood up to the challenge and gave us her opinion. It moved me that she cared enough to risk it all this way. Time is flying by quickly and I don‟t know what to do; mom seems so sure of herself … I tell dad that I cannot decide, and he should make the choice for me. “What do you think about Dr Lanksch and the hospital here?” he asks. “I think they‟re good. I think they can do it. I want to do it here.” I tell him. He smiles, “Good, that‟s what I think too. I don‟t want to risk moving you. If it was me, I‟d have surgery here. I‟ll tell Dr. Lanksch that we‟re staying.” Jan Sweeney, The Week of May 17th, 1999 When Jim and Sophi went to Berlin on May 18th, I immediately set to work to find information on brain tumors and to locate the best doctors for Tom. For once my trusty AMA Family Medical Encyclopedia was not much help. Over the last two weeks, prior to Tom‟s diagnosis when he was complaining of headaches, I combed it to find some other diagnosis, besides brain tumor, that fit his symptoms, but to no avail. Furthermore, the information on brain tumors was quite limited. I was concerned about Tom, worried that he had a brain tumor, but whenever Jim or I suggested that he get a brain scan, he assured us he had it in hand. As soon as Tom was hospitalized, the young German neurology residents came up with a diagnosis which sent me online. Both my brother-in-law Dan and my friends Robin Forst and Tom Bondy, were adept at searching the internet for medical information. Together, we were able to find the German doctors preliminary diagnosis and were cheered. Meanwhile, I reached out to my friend Laura Borenstein, whose sister, nephew and friend Dorothy had all had brain tumors. Dorothy directed us to a local doctor who recommended a doctor in Germany. There were two problems, the doctor was in Hamburg, a long way from Berlin, and he was not a specialist in Tom‟s type of tumor. A dead end. But I had at least learned that there are many types of brain tumors, each with its expert oncologists & specialist surgeons. Laura held my head above water while I explored further. Pretty soon the information was coming in faster than I could absorb it. Our close friend John Sexton, the Dean of the NYU Law School, put me in touch with the brain tumor department at NYU‟s medical school. Tom Bondy said the best brain tumor surgeon in New York City was Dr. Fred Epstein at Beth Israel. Ron Ehrenberg (the father of Eric, who had had a similar tumor to Tom‟s eight years ago) confirmed Tom Bondy‟s opinion, and urged me to go immediately to Dr Epstein. I called and explained the situation to the Beth Israel Pediatric Oncology Unit (because this type of tumor usually occurs in children) and was told that I should get the MRIs from Germany and come in for a consultation. I called Jim and he said he would send them immediately. Then came an unusual intervention. Sara Buchdahl, the daughter of our old friends David and Carol in Vermont, was now a medical student at Albert Einstein Medical School in the Bronx. On hearing the news, she went to her advisor, Dr. Lynn Goldman, a pediatrician who trained with Dr Epstein at NYU and whose husband Dr Jim Goldman is a pathologist at the Neurological Institute at New York Presbyterian Hospital. Lynn encouraged us to her husband who arranged for a consultation with New York Presbyterian‟s Dr Jeffrey Bruce, a neurosurgeon who specializes in tumors of the pineal region, the center of the brain. The MRIs were sent from Germany overnight by courier, and arrived at 11am on Friday May 21 st. With 3 sets of doctors to consult in only a few hours, I phoned each one with trembling hands. The folks at NYU were curt. Dr Kelly, the head surgeon, would not look at the pictures on a Friday. They had to be left with a check for $125 (not covered by insurance) and could not be retrieved until the following week. This, therefore would have to be the last stop. A machine answered my calls to NY Presbyterian. I told the machine I had the MRIs and would like to bring them in for a consultation. At Beth Israel, the efficient woman who answered the phone asked me some questions about the tumor and the initial diagnosis. “There‟s no point in your coming, she explained, if it is not one of the tumors Dr Epstein specializes in”. No point at all, I thought with sinking heart as I was put on hold, but the wait was brief. The doctor would see me. I told her I was on my way. Stopping only

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to leave another message for NY Presbyterian and to ask Laura to come over to man the phones in my absence, I plunged into New York‟s summer heat, clutching the heavy pictures of my son‟s brain. three subways and a cab later, I was at Beth Israel Hospital, just opposite Gracie Mansion, the mayor‟s residence. Almost immediately I was ushered into Dr Epstein‟s office. Dr Epstein was composed as he clipped and illuminated the pictures on a light board. He explained that the tumor was not what the German doctor‟s thought. It was indeed a rare tumor, but one in which he is a specialist. His team deals with approximately one a month. Most of the patients come from outside the metropolitan area. He explained that Tom‟s symptoms were due to the hydrocephalus. He pointed to the huge tumor in the center of the brain. It had been growing in the third ventricle of the cranial-spinal fluid system for a long time, he said, with no perceptible effect because there are no nerves in the area and no brain functions. Normally the ventricle would appear on the MRI as a long, flat deflated balloon. As the tumor grew the ventricle had expanded to accommodate it, like a balloon filled with air. Finally the tumor had grown across the exit, the spinal fluid was backed up like a reservoir and was pressing the rest of the brain against the skull resulting in the headaches and other symptoms. Inserting a shunt to drain the excess fluid would relieve these symptoms. Tom would feel better and could fly safely to New York for surgery. Dr Epstein comforted me by saying that he would do the surgery and that, because it was so large, the tumor was more likely to be benign. He did not recommend surgery in Germany because the rarity and size of the tumor called for special expertise. He had never heard of Dr Lanksch. Nevertheless if we did go ahead with surgery in Germany, he would also be willing to take on the aftercare. I was convinced Dr Epstein was the man, but I wanted the second opinion. I jumped into a cab a little after 3 o‟clock, right into the Friday afternoon mass exodus from New York City. The FDR drive, heading for the Tri-borough Bridge, was jammed and instantly the cab was in a traffic jam, The quick-thinking driver did a U-turn and crossed town to First Avenue,. All was well up to 148 th St. where we encountered a backup for the George Washington Bridge. Dead stop, then a slow creep up to 158 th, and a convoluted route across town to 168th and Fort Washington Avenue, the location of the Neurological Institute. Even though I had been lucky to find a quick witted driver, who knew his way around, the ride took an hour. To my amazement Dr. Bruce was waiting for me. Much taller, much younger and much graver than Dr. Epstein, he nevertheless told me the same story. He said that the surgery was not new, but had been developed thirty years earlier at the Institute. He sees about 10 cases a year from all over the country. Dr Bruce gave me copies of several articles he had written on the diagnosis and treatment on tumors of the pineal region. Though tough going, the articles boosted my knowledge to a level of specificity that far exceeded that of my general physician. I knew that Dr Bruce would also be an excellent choice for our neuro-surgeon. I had gone in short order from worrying that I would not be able to find the right expert to having to choose between two great doctors. The only problem now was to choose between them and get Tom home. It was too late now to get downtown to the NYU Hospital by the 5pm deadline, but that didn‟t matter because I already had two superb options. I pondered all the way back to Greenwich Village on the A train about how to make the selection. I called my husband in Berlin as soon as I got home. I heard, to my horror, that I needn‟t have worried about choosing between the two surgeons. Without waiting to hear from me, Jim had decided to go ahead with the surgery in Berlin. Tom‟s surgery was scheduled in Berlin for early on Tuesday May 25 th. It was already 11:30 PM in Berlin and a holiday 3 day weekend. It was too late to stop it. My only option was to go along with his uninformed decision. My only choice was which flight to take to Berlin. Berlin, May 21st Mom continued to battle for her point of view, but eventually, she had to acquiesce. We were not coming home, no matter how hard she pleaded her case. The decision had been made. Mom gets a plane ticket and gets set to come to Germany. She will arrive the night before my surgery, so I will have enough time to see her for an hour or two. This decision opened a big gulf between mom and dad, one not fully repaired even a year later. Mom was sure that I should be flown back to New York City, which was probably natural since she hadn‟t seen how I looked in Berlin and had been talking extensively with the New York City doctors, who are very impressive and very confident. She argued and pleaded with my dad, day and night to no avail. Surgery would go forward in Berlin on May 25th, my parent‟s 22nd wedding anniversary.

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Chapter 8: Morning of Brain Surgery
Morning, May 25th “Sind Sie bereit?” Are you ready? I open my eyes. All around my bed are nurses, male and female, looking at me. Dad is there – he squeezes my hand. As my eyes open, the nurses snap into action, and start slowly moving the bed, rotating it around corners or positioning it so it can fit through doors. I am moving, I‟m on my way to brain surgery. “What is life going to be like after this? Will I even survive?” I know, I‟ll pretend like I‟m still asleep, and this is a dream. Besides, there‟s nothing I can do now. I‟m in their hands. My whole life – it‟s all summed up by today‟s outcome. Will I wake up? I better. It is the morning of my surgery. All I can feel anymore as anxiety chases relief in wild circles around my body is happiness that I all the waiting and thinking and decision making is over, and they‟re finally going to do something to help me. I haven‟t slept well in days, and very little last night. All night long I wondered if this would be my last night before I died. I wanted to make peace with God, my family, and the world. I kept trying to find that one profound realization where the meaning of life became clear. But life still held back her mysteries from me, and all I could be sure of was that I had to come through brain surgery. I would have to be ok, and I would not let my body or my brain quit on me now. There‟s still so much left for me to do in my life. I need to live. Please God, let me live. Remember our deal; if you spare me, I promise I won‟t let you down. “Tomorrow, my life will be different.” I think, and that gives me strength and calms my nerves. At least whatever they do today will change the misery I‟m in in some way. Despite my thoughts of suicide at my most desperate, I really want to live through this, in whatever form God says I should, but if I am destined to die, it will be better than this endless waiting, the nighttime demons, the headaches, and the dizzying weakness that my life has spiraled into. Something will be different after today. I‟ve lost all notion of time and date, or how long I‟ve been in the hospital. If I had to guess, I would say probably about 3 months, but the same drudgery – the same schedule every day, wake up, eat, talk to friends, sleep, eat, wash, sleep (repeat) has stripped me of any conception of the date or what day of the week it is. I miss knowing the day of the week, although I don‟t suppose it matters in the hospital. I miss saying, “it‟s Friday. It‟s the last school day of this week. Tomorrow, I‟m going to (play basketball/get drunk/go skiing/party/go to the beach/just sleep in) do something fun.” I hardly remember what fun is. The good memories of my life are slowly ebbing away, replaced by visions of nurses with flashlights, checking my pupils every 15 minutes during the night. As they wheel me down and around the halls, the sun starts to just peek out from beyond the horizon. Birds are waking up, life is starting its daily cycle all over again. There is no way I can die; it wouldn‟t make any sense. It wouldn‟t fit with the incredible, awesome majesty and mystery of life. My whole life would have been a waste, and I know that‟s not what‟s supposed to happen. I will make it through this, and I will do great things. That is the only story that makes sense. It is very dark and quiet. I am afraid. May 24th The day before brain surgery. Potentially the last day of my life. What do I do? How do I make this day special? Tomorrow, I could be dead. I might never recover enough from the surgery to ever be myself again. Who knows if I will come out of brain surgery alive, or if I will still be me? A large tumor in the middle of my brain. Can the German doctors do it? The situation couldn‟t possibly be any more tense. Father and sister are with me all day, making my peace with those around me, and trying to fortify myself for the difficult day ahead. My dad stays with me all through the afternoon – he is trying to get me to do visualization techniques. He tells me to picture my immune system fighting off the tumor, killing it, tearing it to pieces. I try to do what he tells me, all I see though is a giant tumor in the middle of my brain. I try to focus on his words; they battle against my own dark fears and nightmares, and my brain feels like it‟s going to explode from a full-scale war of words and thoughts. He tells me over and over again that I am just starting on the road to full recovery. I don‟t know if he is as worried as I am - I can‟t read it in his eyes, but he must be. He‟s probably going out of his mind, trying to look calm. Is he thinking about all the times we‟ve shared together? Tennis and Skiing in Vermont – hitting tennis balls back and forth, trying to improve my play, and “increase my human capital”? All the work and love he‟s put into me, all the time and dedication, hopes and dreams, and now this…

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There is nothing left to talk about, nothing left to decide. The decision has been made, the die cast, and tomorrow, we‟ll see if I got lucky, or if the game is over. This is what‟s on our minds, the only thing anybody can think about today. But no one wants to bring it up or consider the possibility of a less than successful surgery, so we sit and say “I love you,” to each other a lot, and Sophi and dad try to bolster me - and each other as much as possible. We make small talk- they are doing all they can to keep my spirits up. The only thing they can possibly do to affect this brain surgery now is to try to send me in there with a positive attitude, and that is exactly what they are trying to do. Is there anything left undone? We keep trying to think of something more that will give me an advantage, some clever idea that will unknot this whole dilemma. Nothing. Brain surgery will be what it will be, and there is nothing left to decide or do except wait. Will I ever see them again after today? What will they do if I die? I am more afraid for what would happen to them if I die than I am for myself. I sense that my life affects my whole family‟s future. I need to stay alive to keep my family sane. I mustn‟t die; my family will fall apart. I am sad that Emily is not here. I would like to be able to say “I love you” to her one more time, thank her for everything she‟s done for me, and be held in her arms. She is so great, and its only a shame that I might never get a chance to tell her everything she means to me, everything she has done for me. We‟ve talked on the phone, she‟s on her way, and I know that we love each other very deeply. But it‟s fucked up that it took this long for me to realize what she has brought into my life. I miss mom even more than Emily, though, I long for my mom so badly. She‟s supposed to be here this afternoon. I need to hear her tell me that I will be alright before I go under the knife. About noon, she arrives. Her presence and her smile lighten the room and my spirits. The whole room looks different – healthier, brighter somehow. Mom looks the same as ever – good old reliable mom. Her face masks all the pain, and all I see is relief and love. She is smiles at me, and a glow seems to spread around the room. Everything looks brighter, hopeful and beautiful. She is by my bed, holding my hand. I‟m happy; for the second time in a long time, something has gone right. I‟ve got my mom with me now. I hope I am not just dreaming or having a delusion, that she is real. My spirits soar, it is so great to see her. She is smiling at me. “I made it,” she says simply. “Oh mom, I love you so much. I‟m glad I got to tell you. Sorry we didn‟t come home to New York. I know that‟s what you wanted…” “I love you too… You just focus on making it through this. There are people all throughout the world today praying for you – in the US, Germany, England, Australia, Canada – those are the ones I can remember - and they‟re not going to stop until you are ok. We will see that you come through this alive. I love you… Stay strong.” And one more thing – produce some sperm. I am wheeled into a bathroom down the hall from my room. They hand me a cup, and tell me they‟ll wait outside and when I‟m done, I can hand the semen-filled cup to them. A few days ago, my dad asked if it would be a wise idea to bank sperm before the surgery, in case the surgery affected my sexual function in any way or, I thought morbidly, if I didn‟t come out of the surgery at all. Then, my family would at least have something left of me: sperm. The German doctors told him it would be a good idea. Sperm production is controlled by hormones produced in the hypothalamus. While the hypothalamus is not near the area of surgery, the prudent thing to do is to collect and freeze some sperm before undergoing brain surgery, just in case there were a problem later down the road. Surgery, chemotherapy, and radiation can all have negative effects on hormone levels, and we want to make sure I don‟t lose anything I don‟t have to. The doctors tell us to do it the day before the surgery was scheduled, just in case there were any last minute changes of plan, and I ended up going back to New York. At the time, the idea of banking sperm seemed truly ridiculous. How could I do that in this condition, with all these tubes coming out of my brain, and all the energy I‟ve lost? And does it really matter anyway? If I die, especially of a brain tumor, who‟s going to want my sperm? The doctors leave the room. I stare at the cup, and wonder if I can really masturbate successfully under these conditions; a hospital bathroom, tubes coming out of my head. This is not a sexually stimulating situation! I look down at my penis. He‟s not interested in doing this at all, and neither am I. I‟d much rather save whatever energy I can muster. But if it must be, it must be. Through waves of headaches and nausea, I masturbate for the first time in weeks and ejaculate into the plastic cup. I am taken back to my room, back to my family. “How‟d everything go?” my father wants to know. “Fine.” I say meekly. I don‟t really want to talk about it. Let‟s talk about something else. Let‟s talk about the next step, after I come out of surgery. 36/9 8

There is a small commotion. A man enters the room, a Jewish man. Ah, here‟s the Rabbi to bless me. He sits down by the bed and introduces himself. His long beard, side-burns, and traditional orthodox attire at once comforts and frightens me. I am glad he has come, but I am intimidated by having a holy man so near me, about to pray over me, asking God to spare my life. I have tried to lead a good life, but I know I could be a better Jew, my faith could be stronger, and I‟m not sure if God won‟t listen to this prayer, and decide I am not worthy. I have to believe I am. God will save me. The Rabbi puts a yarmulke over the tubes coming out of my head. He has me hold his bible, and starts to say a prayer for me. I don‟t know what he is saying (it‟s all in Hebrew) but the words are soothing. When his hand passes over my body, ending with my head, I feel the hand of God pick me up, cradling me, enveloping me into a peaceful, healthy place. For a minute, I forget the struggles of brain tumors and surgeries, and lose myself in the mystery of the prayer. “I have prayed for you, and God has heard my prayer,” the Rabbi tells me. “Tonight, I and the Lebovitcher schul in Berlin will hold an alnight vigil for you. We will offer continuous prayers to God, and will not stop until we know you have come out of surgery.” Evening; 9:00 p.m. Paolo‟s mother bids us goodnight and good luck, says a prayer for me, and heads home. My other Stanford friends who are there all tell me they are praying for me, and wish me luck. One by one they say goodbye – what kind of a goodbye it will be is not certain, and head out of the hospital. Dad asks me if I‟d like him to stay with me through the night, in case I can‟t sleep or I need something. I tell him I‟d love that. He asks the nurse if he can stay. He promises to be quiet, and to be practically unnoticeable. The nurse obstinately refuses. I try to help out by pleading the case in German, but it is no good. At about 9:30 PM, the having been down for hours now, I say my goodbyes to my family – my mother, my sister, and last of all my dad. They head out slowly, reluctantly. Dad says he‟ll be back first thing in the morning. There is nothing left to do now but pray and wait. I ask God to deliver me through the brain surgery. Please let it go alright, and leave me with enough cognition to realize how lucky I was to get through it. And whatever happens, please let my mother forgive me, dad and Sophi for disregarding her and choosing this path. I can feel my bed starting to pick up speed now. We are on a straight-away, probably some long hall with more rooms and sick patients inside. The rooms that we pass seem to be asking why we are disturbing an otherwise quiet hallway. What do you have young sir? I have a brain tumor. It wants to kill me, but it‟s not gonna. I‟m going right now, right now and I‟m gonna tell my mommy, and she‟s gonna kick that tumor‟s butt! I look outside the window. It is dark, but there is just enough light to make out vague shapes. It isn‟t much to look at, but it is the first new scenery I‟ve seen in what seems like decades, so I watch it with fascination, trying to find out if it has any last minute clues about what to do about this brain tumor problem. Perhaps, just maybe, there will be an answer to whether I should have flown home or not somewhere out there. Nothing seems to make sense, but maybe I missed it. My head hurts too much to try to decipher cryptic scenes. I wonder how old I am, how long I‟ve been in the hospital. It seems like a lifetime, but it‟s probably just a couple weeks. My body feels really old – stiff, enervated, and unwilling to move. The sun gives the halls a ghostly aura, a strange presence that is my spirit, already half outside of my body. I am terrified out of my mind. Every second we are in transit, I come closer and closer to what may be my last conscious moment. I realize that I might be near the end, and I need to try to think of a last profound thought before I go in to this. But no thoughts come to me. My mind is blank except for the fear. I am getting tired again. Fear has moved a little bit further off now. I know that surgery is upon me, and that it has to happen. I will accept whatever the consequences are. As I slip through the doors to surgery, and the anesthesia starts to work its way through me, I reach a calm, meditative place. God and fate will carry me through this. I am sure of it. I go under.

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Chapter 9: Brain Surgery
As the surgery approached, I often repeated a joke that I had seen on the Simpsons Halloween special. Mr. Burns wants to turn Homer into a cartoon version of Frankenstein‟s monster. He lays him out on a table, cuts the top of his head off with a “brain saw”, and then asks Smithers, his office assistant, for an ice cream scoop. “But sir!” says Smithers, alarmed at the prospect of using such an unsophisticated tool. Mr. Burns replies impatiently, “Dammit Smithers! This isn‟t rocket science! It‟s brain surgery.” Everybody laughs, but we are all scared. “Brain Surgery” sounds like the scariest thing that could happen to you. And that‟s if you‟re being operated on in an American hospital, where you feel comfortable with the doctors and the surroundings. What would be a terrifying experience at home is doubly terrifying in a foreign country. Broadly defined, There are three main surgical routes into the brain. The first and most common is frontal craniotomy. It goes downward from the top of the skull. This was the approach to my tumor. It is the simplest way to get to the pineal region, which is located in the center of the brain, and it allows doctors more room for error, plus a better view of the brain. The top of the brain contains less glands and less critical brain centers (like the visual cortex at the back of the brain, or the pituitary and hypothalamus at the front) than other approaches. The second type of surgery is through the side or back of the head. The setup and start are similar. A piece of flesh is peeled back, a section of skull resected, and the brain exposed. This method is best suited to tumors that are very close to the side or front of the brain. My friend Ben Tomsky, who was diagnosed with a brain tumor a year before I was, underwent surgery through the side of his head for his growth, because it gave doctors easier access to his tumor. Surgery through the back of the brain is rare because that is where the visual cortex is, and if there is any vision that can be saved, neurosurgeons will try to find another route. However if the problem is the visual cortex, or is in it, surgery through the back of the skull makes sense. The third basic way to the brain is through the nose. It is a direct route into the brain that avoids cutting through bone, which can be potentially dangerous when the time comes to put the patient back together. The disadvantage is that seeing what is going on must all be done with the aid of a fiber optic camera that is also placed up the nose. This method of surgery is complicated, slow, and grueling for the patient and the surgeons. After this surgery, the trauma to the nose takes a very long time to heal. Sadly, two other friends have had this operation. Both Kalla Popadimas and Eric Ehrenberg underwent tumor resection through the nose. The route that the surgeon takes obviously depends on the location of the tumor. In my case, the tumor was located almost completely dead center in my brain. The most common types of tumors in this region are pineal gland tumors. The pineal gland is a pea-sized hormone factory located posterior to the hippocampus. My tumor was not growing in the gland, but was close enough that the best route to resect it would be similar to a surgery to remove the pineal gland. I have heard that people have had brain surgery while they are awake. Using acupuncture, the nerve sensors on the skull and scalp can be turned off. This would be advantageous because the doctors could ask the patient how things were going, and could tell by the way the patient‟s dialogue changes if they are close to any critical brain organs. This is not what happens in my case. The tumor is so deep, and the route they are taking is so sensitive, that I not only have to be unconscious, but paralyzed. Even while heavily sedated, people still breath, cough, and swallow. This is too much movement where brain surgery is concerned. If the patient coughed or twitched while the scalpel is in the brain, it could spell disaster. To solve the problem of involuntary muscle movement, the anesthesiologist administers powerful drugs which paralyze nearly all muscles. The heart is not affected, but the lungs are, so the patient must be attached to a ventilator to keep air cycling in and out of the lungs. The patient is in a near-death state for many hours. The same paralyzing drugs are given to heart surgery patients, because any small twitch could cause disaster. Once asleep, the first step will be to cut my head three times, each cut equidistant apart, centering right from the top of my skull, with each cut swirling down and counter-clockwise. The surgeons will then peel the skin off of my skull, and get down to the real work. In the center of the area from which skin has been removed, they cut a hole through the skull, exposing the brain. The 2 cm hole should be just large enough just to admit a specialized scalpel with a fiber optic camera. An exposed brain is a dangerous thing. Animals are designed with immune systems to fight off bacterial and viral infections all over the body. But to help seal off the brain from exposure to disease, the central nervous system has its own system, and the blood/brain barrier ensures that even while a patient suffers from the flu, it rarely spreads to the brain. The downside of the blood/brain barrier is that because the brain is blanketed in 38/9 8

cerebral-spinal fluid, and blood flow is low, disease that can get into the brain can run rampant due to the absence of the immune system. Simple infections that the immune system is capable of fighting off elsewhere in the body can be fatal in the brain. Continuing the story of the flu from above, if it does manage to get to the cerebral-spinal system, it is meningitis, a much more serious disease. In order to prevent contamination by disease in the exposed brain, the doctors must follow the strictest disease control policies possible. The OR must be sealed and the air sterilized and recirculated. All doctors must scrub down in the atrium before entering the OR, everyone must wear a mask over their mouths, and no clothes that are not sterilized – i.e. No street clothes or clothes that have been out in the open air – are allowed. After exposing the brain so that it can be operated upon, they will cut a key-hole passage through my corpus collosum, a small crossing which connects the left and right hemispheres of the brain, the only place where the two halves of the brain meet and communicate. If a person‟s corpus collosum is severed by head wounds; the result is like dividing a person in two. If you show one thing to one eye, and a different thing to the other eye, the person might chuckle or gasp at the image controlled by the weaker side of the brain, not able to explain his/her smiling. In the pre-op briefing, the doctors told me that this would be the most dangerous part of the operation. I face risks: Even if surgery is 100% successful, I may lose some hand-eye coordination and coordination between halves of the body. My left eye might do something different than my right eye, or I might have difficulty controlling one side of my body. I will probably lose the ability to look up. The center for looking up is right above the pineal region, and in the quest to remove the entire tumor, it‟s likely to get damaged. After going through the corpus collosum, the surgeons will be at the ventricles. Four ventricles stretch out from the center of the brain and handle brain fluid drainage. In a healthy brain, these ventricles lie completely flat, so much so that you might not even notice them on an MRI (or if you did, you would just see it as empty space). In my case, however, a massive tumor in the third ventricle is blocking fluid drainage, causing the entire ventricle to swell, a condition called hydrocephalus (which caused the headaches that were so hard to diagnose). As Dr Lanksch cuts into the ventricle, the tumor is vulnerable for the first time in its life. The tables will be turned; instead of it killing me, the knife wielding doctors will be cutting it to pieces. The tumor is 6 cm in diameter, and the key-hole cut through my corpus collosum is perhaps 1 cm in diameter. To bring such a large tumor through so small a hole, the tumor is cut, piece by piece, and extracted with a suction tube. Little by little, it will be removed. Other routes into the brain require similar techniques and often have similar associated hazards. If the anesthesiologist does his/her job, regulating the patient‟s breathing and heart-rate correctly, the surgeons stand a good chance of completing the surgery without nicking any important brain tissue. The risk of invasive infection is ever-present in surgery. However, it is a special risk in brain surgery. Another problem in the brain is trying to remove the whole tumor and correct the problem without taking out good, healthy tissue. The brain is very sensitive and often the surgeons aren‟t able to get as good a picture (either using fiber optic cameras, scanners, etc) as they can with other surgeries. Part of the reason that brain surgery is so difficult is that we still understand comparatively little about the way the brain works. Beyond the basics – the parts of the brain that control vision, face recognition, geometric objects & math, what much of the brain does is a mystery. We don‟t know where the language center of the brain is nor the part of the brain in charge of dreaming. We don‟t even know for sure why we sleep and dream. We do know that the brain is the essential part of the body that is the physical manifestation of our conscious, our soul. The brain is central command and responsible for making sure that every other part of the body gets what it needs. With the help of modern medicine, we can replace almost all other organs, or work around their loss, but the brain is critical. It is the most important organ in the body. The surgery takes 8 hours. This sounds long, but some brain surgeries take 10 or 11 hours! These must have been the most stressful hours of my parents‟ and sister‟s lives. I can imagine them waiting for me to come out of surgery, my father and sister pacing furiously, mom knitting, outwardly calm, inwardly overflowing with anxiety. Eight hours after going into surgery, I am recovering in intensive care. My skull has been put back together, the skin is stapled onto it. My vital signs are decent. We won‟t know until the next MRI if the surgery was successful, and we won‟t know for days if my brain still works, and how much, if any, brain function I have lost. The surgeons say that they believe that the whole tumor was removed, but it will be a couple days before they can tell for sure. Until then, we just have to wait and pray. 39/9 8

I‟ve lost 30 pounds at this point, and my body is frail, dilapidated, and old as they stroll me down the corridors to the ICU where I will remain for a couple days until my condition is fully stable, the anesthesia wears off, and the pain diminishes to a bearable level. Until then, they give me morphine to control the pain. (That‟s the good stuff!) Lying there, I know I look like a ghost of my former self, and in many ways – mentally as well as physically, I am. But I‟ve taken a giant step on the road back to health.

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Chapter 9: Recovery - The Hospital as Home
“How did the surgery go?” I hear myself asking. I am still only semi-conscious. I cannot remember where I am or how I got there, or why my head is hurting just as badly as it did before I got to the hospital. I begin to worry that the nightmare has started to cycle around again, and if I‟ll be forced to relive the headaches and confusion that had become such a big part of my life. None of my senses are working, save one: I feel pain, worse than I‟ve ever felt before. Am I dead? Am I in heaven, or still in the hospital? “Did he speak German before the brain surgery?” I hear a voice ask. The anesthesia is still affecting my system, and while I am hearing sounds, I understand nothing. All I am aware of is the unbearable pain screaming at me from the top of my skull. As consciousness slowly starts to return to me, I am welcomed by a world of awful pain, so great that I have forgotten what it was that caused it in order to devote all my energy and efforts into fighting. Before surgery I was told that brain surgery, when compared to other kinds of surgery, is not that painful. Because there are no pain nerve endings inside of your head, the amount of pain is low. There should be some pain where the scalp and skull have been cut, but it is supposed to be relatively minor. The pain is terrible, worse than anything I have ever encountered before, worse than the headaches I had before coming into the hospital, the worst, most painful experience of my life. For what seems like days, I hover on the border of consciousness, my mind completely locked on pain while awake, while at night, I have nightmares in which the whole cycle of hospitalization, pain, and surgery is repeated over and over again. all I can think about is pain, even worse than the headaches before I was hospitalized. Worse than anything. The summer after my sophomore year of high school, I went to J Robinson‟s intensive wrestling camp at the University of Minnesota for 28 days. We worked out four times a day, from 6:00 AM to 9:30 PM, and after every workout, I would be hyperventilating, and contorted with pain. The workouts were so grueling that many macho wrestlers were reduced to tears. J Robinson, the owner of the camp, an ex-airborne ranger, [and Olympian – not sure about this], told us that what we were doing was harder than marine boot camp. The goal was to push us to our mental and physical limits, to prepare us for anything. But it hadn‟t prepared me for this post-operative pain. The pain is so great, that I can‟t open my eyes. While I am engaged in conversation, and seemingly cognizant, I am running on auto-pilot. My active conscious is overrun by the pain coming from all sides. All I can do, day after day, is pray for relief, and to wait for the headaches to subside. If the possibility of “secondlook surgery” (a surgery to look around my brain to make sure they got everything) is ever suggested, I will definitely nix the idea. I couldn‟t take this pain again. Some Time Later The pain has lessened to a manageable level, and the exhaustion subsides a bit. When I open my eyes, I see the world has not stopped turning, and I know that I am alive. My family talks to me, telling me how proud they are of me, how I‟ve made it through the hard part now; I am not so sure. I have nothing left inside – just getting through this took everything. I wake up every day feeling just as weak, wondering how I‟ll ever getting my strength back, and how I‟ll get back home. I refuse to try to tax my brain; I am too frightened that it won‟t work the way it always used to. My eyesight is terrible. I have terrible double vision, and every shape I look at is doubled up and to the right. I try to hold one eye still and get the other eye‟s image to move over and rejoin its partner. The problem is not that the eyeballs are not moving correctly, but that because of surgery, and the nearness of my tumor to the optic nerve, my brain has forgotten how to translate the images from both eyes into a three dimensional scene. No matter how hard I concentrate, my eyes remain obstinately misaligned. The world is a hazy maze of faces without bodies, wild colors and shapes, and like a photo-quality painting that has been smeared sideways and up, blending all the images and colors together. “Tom…Aishitedeyo” I love you. Emily is finally here, finally sitting on my bed, hugging me, whispering to me in Japanese that she loves me. As I try to stare into her eyes, her head is doubled and superimposed on itself, making her appear to have a gigantic forehead. She looks really tired, almost as tired as I must look to her. I feel her aura near me now, a 41/9 8

calm blue like the ocean, patient, constant, soothing. She softly strokes my hand. She is smiling the same smile she had the first time I told her “I love you.” The smile says, “I‟m so lucky.” I squeeze her hand. “Hi.” She says, “I made it.” “I made it too.” I reply, then after a moment of silence, “thank you for coming.” “Are your eyes ok?”

I tell her about the way she appears to me, about the giant forehead, and I start to giggle. She doesn‟t like me laughing at her face, but she is obviously happy that I can still talk, I can still see, and most importantly, I am still alive. Double vision makes many things much more challenging. Eating and drinking are big problems. Since I can‟t see the food clearly, I can‟t get it on the fork and, when I do, I can‟t get it into my mouth. My friends from the Stanford Center join my family and Emily in helping to feed me, putting forkfuls of food into my mouth so that my only job is to chew. Everyone seems to enjoy doing this, especially Sophi and Daisy, who are completely incompetent. How they are able to screw up getting the fork to my mouth is beyond me, but they invariably end up stabbing me with the tines and scattering food over my face and body. Perhaps they are trying to deal with their anxieties. If that‟s their goal, it works. I enjoy their silliness. Reading and watching TV are impossible with two eyes, and too straining for one eye alone. So I lie on my back, thinking about getting better, and about how good it feels to have the tumor beat. I‟ve made it through the really hard part, and the rest should be a cinch. I visualize our apartment in the city, our dog Angus. I am on the right path now that the tumor is gone, and sleep comes much more easily at night. I am free of the evil tumor and the nightmares. I have turned the corner, and I‟m slowly getting better now. “Can you put a nut in my mouth?” The banality of my request evokes laughter from my visitors, especially Adam, the target of my request. Was I serious? “Um, sure,” he answers, confused by what‟s supposed to happen next. I open my mouth expectantly. After a questioning look over at the others, he gets a cashew nut out of the bulging paper bag and puts it in my mouth. This is how I met Adam, my sister‟s boyfriend. Even with my damaged eyes, I can tell that my sister has lucked out. He appears to be about 5‟ 11” – taller than most of us Jacobs, with brown, neatly cut hair and a rather skinny figure. He is not a nerd, but definitely more academic than athletic looking. As he feeds me, the smile I see on his face tells me that he is happy to be involved, happy to be feeding me and doing whatever he can, even though we have never before met. Sophi and Adam had been dating for four months and I had only heard about Adam through telephone calls and emails. Sophi was always telling me that she had met this wonderful guy in her Italian class, and that I should meet him some time, we would have a lot in common. Now that it appeared that we would be in Germany for a few weeks at least, Adam asked our permission to come to Berlin, take care of Sophi, and help us in any way he could. This was not the way I had envisioned meeting him, but I was grateful for anyone who wanted to come to Germany and help me to live. Adam has arrived just hours after Emily has left. It was tough letting her go, but I know that she has stayed as long as she can, and that she will visit me in New York. We hugged each other lightly and lovingly for about ten minutes, trying as hard as we could to melt into each other and fade away the outside world; the hug could have gone on for days. Eventually, we let go, she gave me a light kiss, and left quickly, not looking back. It was hard watching her go, knowing it could be months until we next get to spend time together. But she is leaving knowing that I am in good shape, getting healthier daily, and that I have made it through brain surgery. I am jealous that Sophi‟s boyfriend is here and my girlfriend is gone. I need my lover more than she does. But having met the man, and been fed by him, my jealousy instantly melts away. He is a friend and I am glad he is here, to take care of Sophi, and to take care of me. He is wonderfully generous to me in every way. Before coming to Berlin, Adam asked Sophi what he could bring from home. “I miss my life and my friends” I thought, but I couldn‟t think of anything I wanted or needed. At our first meeting, he presented me with two gifts: a Gameboy color, and a sexy magazine. The double vision made both items unusable, but the thoughtfulness shone through and warmed me to him immediately. Adam‟s tremendous warmth helped all of us there through the ordeal in Berlin and afterwards. 42/9 8

The steroids I‟m on to keep the swelling down have stimulated my appetite. I‟m eating all the time, getting out of bed more, walking around the halls, thinking about the trip back to the US. My spirit has come back. I‟m on the road to recovery now. “Can I take a nap now? Tell my friends I‟m sorry, but I need to get some rest…” I have visitors are coming by all day long. At the Stanford Center, there is a sign up sheet so that people can pick a time to come visit me and not have to wait outside, (there is a two guest limit at a time in my room). Sophi, Daisy, Adam, dad, and Jeff are joined by mid-afternoon by a long line of students – my friends from the Stanford-in-Berlin program, all of whom want to wish me well, see how I‟m doing, and talk to me about my life and theirs. After about 3:00 PM there is an endless stream of friends coming in and out of the room, bringing me presents (generally food) and stories of who‟s been hooking up with whom, and how life in Berlin is unfolding. Everybody gossips with me, and I feel like very much a part of the group. Everybody says how much better I‟m looking since before being hospitalized, and assures me that I‟ll be out of the hospital soon. Students have only been coming to visit me for a few days, starting when I made the decision that I wanted other people to know what was happening to me. I was at first worried about the implications of passing out the news, and needed a few days to think it over. If I broadcast that I was in the hospital with a brain tumor, there would be no going back, the information would be out there in the public sector. I wasn‟t sure I wanted everyone in the world to know, and I definitely didn‟t want to be considered damaged goods. Finally, I didn‟t want others who might divert my attention or my family‟s attention getting involved. This feeling only lasted about one day. I realized that if there was ever a time in my life when I needed the love and support and prayers of everyone out there, it was now. My close encounters with death and tragedy were proof that, although strong in the face of adversity, I needed help and love now. No amount of personal strength could be enough. I knew I needed to let others know; I hoped they would come and help me with my struggles. Bri, Kathy, and Sarah come by almost every day (at least 4 times a week). They help feed me, read to me, tell me about the outside world, about how classes are going, and keep reinforcing that I am getting better and that they‟re proud to know me. They come every day not because they have to, but because they want to. They know that I need their support, and they are willing to sacrifice their time to see me without any desire for reciprocation. They come because they are helping me to get better, to get stronger and eventually out of the hospital, and because it is the right thing to do. All of the students who come to see me have made sacrifices in their schedules and lives, and stay with me as long as I want them to, because I need them. Their love is overwhelming, and it speeds my healing tremendously. After just over a week, my mind is at almost full strength again. I am walking laps around the corridors. I am thinking about going home. Mike Cho A few days after surgery, Mike Cho, a peer from the Stanford in Berlin program, comes to the hospital to visit. I had not shared a lot of time with Mike before: He didn‟t strike me as very sophisticated or cool, and I guess I felt better than him. I didn‟t think we would have much in common, so I had never made a great effort to get to know him. He has come to see me and give me a present. “This,” he explains, “is my bible. I keep it by my bed every night, and read from it when I feel bad, anxious, or uneasy. I‟d like to give it to you, if you think you‟d like it.” He puts the bible in my hand, tells me to use it when I need it. We chat for a while about life, classes, and Germany. After a couple minutes, he sees me getting tired, and leaves, wishing me strength. His whole visit lasted twenty minutes. What an incredible sign of love. What a strong gesture, to give me his treasured Bible. I barely know him, and yet he showed up and gave me a part of his heart. I had labeled him a “loser” before, but today, he has shown me what it means to be a real human being, and a real friend. The hospital is starting to feel like home. All day long, I see friends, visitors, Sophi and Adam, dad, and occasionally doctors who seem pleased by my recovery and generally only ask a few perfunctory questions. The nurses all know me, and when they say my name, it sounds like they are talking to a pal now, rather than a patient. There is the crazy one, Beatrice, who always scolds me. Nothing I do seems to ever make her happy. There is the cute shorter one with red hair, Gabby, who I always love to see, and who always loves to see me. Secretly, I hope that some night, she‟ll sneak into my room and give me a little kiss goodnight, but I guess no real hope of that. 43/9 8

Life in the hospital has gotten almost normal. I have friends and family here, I am gaining weight back thanks to the steroids. I love waking up, feeling stronger than the day before, and thinking about how much stronger I will be tomorrow. Dad comes in early in the morning. “Get out of bed. We‟re going for a walk,” He commands. I get out of bed slowly; I‟m still attached to the brain fluid beakers, which are very sensitive, and need to be adjusted not to drain too fast when I stand up. We walk out of the room, me pulling my tubes and the brain fluid stand with me. We march up and down the halls, and when I want to quit, my dad makes me do two more laps, to push myself. “You‟ve got to get stronger. You‟ve got to push yourself. We‟ve got to get back to New York.” I grit my teeth, and let him lead me around a few more times. I come back to my room tired but satisfied; I am making progress. Yesterday, I only went 4 times around the floor. Today, it was 6. I‟ll be out of here soon. June 5th I stare into the mirror over the sink, as I slowly and painfully shave the stubble and ratty hair on my face. My face looks like shit. I told my dad before surgery that I didn‟t really care about the beard, that I would deal with it later. Now I am sorry that I said that. I look ridiculous, and this shave is going to hurt a lot. Bit by bit, the beard disappears. Each razor stroke releases a ray of spirit, vigor, and youth. When I am done, there‟s a sink full of hair, and a soft, puffy, cherubic face in the mirror. My eyes look uncomfortable on my face, giant swirling confused balls; They have lost their former intensity and focus. Maybe it‟s not the steroids after all that give me the goofy, balloon face or the vast quantities of food I‟m consuming. Maybe it‟s just my eyes. Now that I‟m through surgery, the hospital is no longer frightening. I have dad and Sophi to help me out whenever I need anything, I‟ve gotten to know and like the nurses, and my roommates in the semi-intensive care ward. The optomologist examines my eyes every day. The young residents continue to monitor me, frequently chatting with me about how I‟m feeling. Dr Lanksch stops by occasionally. There‟s a lot of empathy amoung the patients and our families. We‟re like an international family here. “When are we going to get out of here?” In the last couple days, that is all that‟s been on dad‟s mind. He sees me walking around the halls, eating vast quantities of food, mind strong again. The next step, he knows, is to get back to New York. And the only way to do that is to get released from the hospital. The pathology report comes back, contrary to the expectations of the German neurologists and exactly as mom said it would. It is a mixed germ cell tumor, germanoma with teratoma. The germanoma is cancerous, while the teratoma is most likely part cancer and part benign. I will need cancer treatment, chemotherapy and/or radiation. This is what my dad had feared the most. He had seen the cancer treatment that Eric had to go through, and knew the battle with cancer would be extremely difficult. It would wreck havoc on my body. Dad feels like we‟re wasting time now. He is pushing me to get stronger, healthier, eat more, exercise more, work on my eye sight, etc. He is fixated on getting me home as soon as possible, and under the care of the New York neurooncologists. We will have to start round two with the tumor soon. His fanaticism over the last couple days has reached a fever pitch. He is constantly asking the doctors when I can be released. They haven‟t given him an exact date yet – they still aren‟t sure if they cleared the blockage completely and it‟s safe for me to fly. He is constantly pushing me around the halls, telling me to go farther, get stronger. “Push yourself!” has always been dad‟s modus viviendi. Now he‟s applying it to me. When I am not walking, I am working with an optometrist to try to get my eyes to focus together again. The optometrist has me do visual games – color matching, pattern matching, eventually reading. It is good to have something to do during the days. My vision does seem to be getting better, although I think it‟s primarily because my brain is recovering from surgery and forming new pathways to take the place of those that were damaged or destroyed. I‟m stronger and seeing better. I get to walk outside around the grounds, which look incredibly beautiful. It is the first time I have seen the outside in a month. I even start quarreling with Sophi about who gets to use the Gameboy. Dad sees the strength returning to me, sees my eyes starting to focus again. He feels it‟s time to get home. We have finished the Germany saga. It is time to shift the stage to New York City. He once again pesters the doctors about when we can leave, but they are still evasive. Not everything is the way they would like it to be, they tell us. My fluid output from the external drainage is still rather high. They are worried that I might still have some hydrocephalus left. If they release me to fly, and the fluid swelling in my 44/9 8

brain could be aggravated, possibly enough to kill me. Dad is too focused on getting home and beginning chemotherapy to hear them. “Didn‟t you say you got the whole thing?” he asks. “When will we be able to go home? What has he got to prove to you?” Dad is getting very frustrated. He himself now needs to get home. After a month hanging out every day all day at the hospital, he is getting stir-crazy, and does not understand why we are still languishing here. Every day, he asks the doctors. And every day, he gets the same answer: “Soon, but not yet. We can‟t say when.” Finally, the doctors tell us that I must have another MRI, and if everything checks out, I can leave by Friday. The MRI comes and goes, and I pass flawlessly, as far as the doctors can tell. Still, they have reservations about releasing me. They are still worried that the hydrocephalus might not be draining properly, and the brain fluid output levels seem to suggest this. I still cannot leave. Finally, dad keeps the pressure up long enough to have them give me the ok to leave. They just want to hold me a couple days longer, and if they haven‟t changed their mind by then, I can go. We ask for a specific date, and they tell us possibly Thursday or Friday of this week. On Thursday, there is still no clear answer. Apparently the fluid is coming out of my head through the external drainage faster than it should be. Dad has fire in his veins today, and is charging around the hospital, looking for someone to tell him why we can‟t leave. He wants us out of there today. It is the day he has marked on his calendar, “Tom flies home triumphantly” and he is sick of waiting in Germany. He wants to get me home and start me on my cancer treatment there. Now there is another slowdown here in Germany, and we are once again told that we cannot leave. A younger doctor who is studying with Dr Lanksch has been monitoring my case, and thinks that the rate of drainage from my head is still too high to make the journey safe. She has blocked my release, and wants me to spend a couple more days under monitor in Germany, to see if the fluid output comes down. When she comes to visit me on her rounds, dad is spitting venom and asking incredulously over and over again why we are not being allowed to leave. “You told us we could leave today. What gives?” “You may have a recurrence of hydrocephalus.” “The tumor is gone, and Dr Lanksch told us that there is no way hydrocephalus could return. He says we can go, let us go!” Eventually, dad wins, and we are cleared to leave the hospital. I am disconnected from my apparatus, the drains taken out of my head, (although even while they were doing this, I couldn‟t understand how they were doing it), and released from the care of Charite, Berlin. Next stop: New York City. We have just enough time to get a cab and get to the airport. Mom has already brought home most of my stuff except some clothes I am now wearing. Dad and Soph carry my baggage for me as we move through the lines. We are in luck: we make our flight on time. As we board the plane, we kiss and hug. I am pumping my fists in excitement. I‟ve made it. I‟m going home.

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Chapter 10: Constructing a Support System in Berlin
James Jacobs, May 30th, 1999 It‟s amazing how quickly one adjusts to a completely different world. In a matter of days, the Rudolph Wirchow Klinik fur Neuro-Surgery in Berlin has become my whole world. New York City professional and social life has receded into the background. I have had to quickly adopt a new routine in a new town, and wonderful people emerge to make it possible. Karen Kramer, the Stanford Program director, has become an instant friend and an integral member of the team. She picked Sophi and me up at the airport, briefed us on Tom‟s condition, made reservations for us at the guest house, and volunteered to deal with all the insurance and business issues connected with the Tom‟s care. She is always “on call.” Soon it seems like the most natural thing in the world to be chatting with her on the phone about her life and ours. Henner Hess, a sociologist on the faculty at Frankfort University, drops everything, jumps on a train, and arrives in Berlin by our second evening. I know Henner well due to his recent sabbatical years in New York City, where we shared professional and social lives. Three years ago, Tom stayed with him and his wife, Katja, on his Germany tour. (Jan and I also stayed with them in Heidelberg on another occasion.) Henner‟s first move is to visit Tom and hug him. Then he questions the doctors. After visiting hours, he accompanies Sophi and me to dinner across the street. The Italian trattoria that has become our social club. The location is perfect, the proprietor personable, the food tasty, the price reasonable, and the atmosphere relaxed. If one of us goes to dinner early, the other(s) know exactly where to look. Some nights it seemed as though our group had taken over the restaurant. Henner and I walk around late into the night discussing the situation, especially whether to keep Tom in Berlin for the surgery. These long dark nights with Henner feel very spiritual. We talk about the decision, on which Tom‟s life rests. We walk, talk, and take stock of life. Even though the answers are no more clear by the end of the road than at the beginning, I feel like we‟re accomplishing something. Henner devotes himself to us day and night for three days. By day, he works the phones, calling doctor friends all over Germany to get information about Dr. Lanksch and the neuro-surgery team at the hospital. He is committed to helping Tom get better, as well as helping Sophi and me handle the situation. It is just a coincidence that Nick, Tom‟s “almost-cousin”, is in Berlin studying Japanese at Frei Universitet. Nick is a bastion of support, especially for Sophi, whose spirits he lifts on walks around the hospital grounds and neighborhood. When we need translations of medical documents, Nick dispatches the task cheerfully and competently. He and his German girlfriend, Julianna, have a standing invitation for dinner at the trattoria. Nick taught Sophi her only line of German, which she found occasion to use at least several times a day. “Ich bin kein Tourist. Mein Bruder ist in Krankenhaus.” (I am not a tourist. My brother is in the hospital.) He is a gateway to Berlin: whatever we need, he is there to help us with. Karen Kramer asks if we would like to make contact with the Jewish Community. I ask Tom, and he immediately says “yes”. Karen‟s friend, Joel Levy and his wife, Carol, become instant friends. They both visit the hospital practically every day. Joel is a former diplomat with the usual postings around the world, eventually rising to be the U.S. Ambassador to Berlin (until that position was abolished with the fall of the Berlin Wall in 1989). Now he is Director of the Ronald Lauder Foundation in Berlin. He and Carol have been living in Berlin for many years and, of course, know the city backward and forward. Joel‟s first question is if we would like a suite at the Hotel Berlin, which is owned by a friend of his. While the guest house on the hospital grounds is clean and serviceable, it is a bare bones operation. So, when Jan arrived, she and I moved into the Hotel Berlin, while Sophi stayed at the guest house along with a revolving cast of characters – Daisy (her best friend), Emily (Tom‟s girlfriend), and Adam (her boyfriend). Sometimes we maintained two rooms at the guest house in order to accommodate all our visitors. Berlin, May 23th Joel asks Tom if he would like to see a rabbi. Tom answers affirmatively and Joel said he would take care of it. The next day, the day before the surgery, a Lubuvitcher Rabbi turns up at Tom‟s bedside. Rabbi Teichtel is an American from Brooklyn in his twenties who was posted by the Lubuticher movement to Berlin to proselytize and invigorate the Jewish community. He has a long black beard and is dressed in the black medieval garb of his sect. He shakes hands with me, but not with Sophi. She whispers to me “He doesn‟t touch women.” I am taken aback. I have never had any contact with Lubuvitchers. In fact, I found the ones who approached me on 46/9 8

the street around NYU to be strange, even a little scary. I wonder how the hospital staff and the other patients in Tom‟s room regard this rabbi and this scene. I feel embarrassed. In case anyone hadn‟t realized we were Jewish, they realize it now. Rabbi Teichtel radiates warmth and positive energy. He tells Tom over and over that he has no doubt that Tom will survive the surgery and demands that Tom himself have no doubt. He says that he has arranged for continuous round the clock prayers for Tom‟s health the next day, all day, at his schul. The praying will continue until they heard that Tom was okay. Finally, Rabbi Teichtel has sent a message back to Brooklyn asking his colleagues to say a prayer for Tom‟s recovery at the graveside of the Grand Rebbe whom the Lubuvitchers believe to have been the messiah and capable, even in death, of sponsoring miracles. Then Rabbi Teichtel asks Tom if he would like a blessing. Again, Tom says yes. The rabbi carefully places a yarmulke on Tom‟s head, carefully avoiding the tubes that are drawing off the brain fluid. He holds Tom‟s hand and chantd a Hebrew prayer. This scene, the religious words and the holy prayer set in a modern day neurosurgery ward in the heart of Berlin, made me want to laugh and cry at the same time. I am touched beyond words, and I grab Rabbi Teichtel‟s hand and arm, gushing my thanks. The rabbi‟s wife shows up with a gift of food. She too is young, old-fashioned, very sincere and warm. When they leave, they again assure us that God will see Tom through the surgery At that moment, I might have considered becoming a Lubuvitcher. The next day While Tom is in surgery, Jeff Lauren arrives from Baltimore. Jeff was my roommate at Johns Hopkins in the late 1960s and has been my best friend ever since. Now he is my roommate at the Hotel Berlin. He has known me longer than Jan, whom I met in the mid 1970s. He‟s known Tom and Sophi since they were born. Jeff is a successful developer, now semi-retired. Over the last several years, he has frequently accompanied me on professional trips abroad – South Africa, Spain, and just this past August to Seoul, Korea. From there we flew together to Tokyo where Tom joined us. The three of us had a fabulous two weeks touring around Japan. Jeff and Tom were constant companions since I had various professional commitments. Jeff is a high energy guy, always on the move. He talks fast and moves fast. The concern and love he showed for Tom was like that of a father to his own son. The evening after the surgery, Jeff took a turn scrubbing down (sterility was very important in the ICU) and visiting Tom in the recovery room, and then served as the life and soul of the dinner group at the tratorria. Daisy Carrington arrives a few hours after Jeff. She and Sophi have been good friends since age five. Because Daisy is the only child of a busy single mother, she spends a great deal of time at our apartment. Sometimes she would sleep over four or five nights in succession. Often as not she would be with us at dinner. She used to say that she was our de facto third child. A very vivacious and humorous young woman, Daisy has come to Berlin to support Sophi. Still, she had grown up with Tom too and he is happy to have her on the team. Daisy bunks with Sophi at the guest house. She is to Sophi as Jeff is to me; she keeps Soph‟s spirits up, and provides her with a shoulder to cry on. May 27th Emily arrives two days behind Daisy and squeezes into the guest house with the other two girls. This is my first opportunity to meet Tom‟s girlfriend, who I had heard a lot about before but never met. She is an odd member of our group, because while the rest of us have all been lifelong friends, Emily has never met any of us before. This must be hard for her, to not know how she fits into the picture, but trying to help just the same. Her father‟s disapproval of her actions and insistence that she be sent home immediately adds to the heavy weight of having a loved one in critical condition. How could I send her home now? How could I do that, to her or to Tom? Having Emily there certainly gives Tom a lift. Forcing a smile, he asks me whether I could arrange a conjugal visit! With the tubes coming out of his head and hooked up to an IV, I think he must be kidding. But the kissing between them has me worried about contagion. With my son‟s welfare on the line, I discretely tell Emily that I am worried that kissing could lead to infection. She laughs, assuring me that she had nothing contagious. For some reason, I accept that explanation. May 30th A few days after the surgery, Jan leaves in order to find an oncologist in NYC. Jeff remains in Berlin with me until the end of the week. He spends a lot of time at the hospital, does a little sight seeing, at times taking along Daisy and Emily and totally wearing them out. In the evenings, back at the hotel, we go down to the 47/9 8

sauna to stretch out, relax and reassure each other. Jeff and I, close friends for more than thirty years, become even closer. June 1 Kaye Franks (Jan‟s brother‟s ex-wife) and her new husband, David Sorrell, fly in from Birmingham, England (Jan‟s birthplace and home town) and become my new roommates. Kaye‟s twenty year marriage to Jan's brother had ceased, but she never stopped being Tom‟s aunt. She was shaken by my telephone call about the tumor and immediately volunteered to come to Berlin. Now Tom and David are meeting for the first time, and I swell with love as I watch the way David and Tom bond. They are instant friends. Kaye and David stay the better part of a week, wrapping Tom, Sophi and me in their warmth. Meanwhile Adam comes and Daisy leaves. Like the others, Adam contributes his own special energy and personality to the team. Perhaps because his only brother is developmentally disabled, Adam seems completely at ease with his role as care giver to a distraught family. More than any of us, Adam felt uncomfortable about being a Jew in Germany. But he settled in well, spent a lot of time at the hospital, and of course showered Sophi with love and attention. Understandably, the nurses are forced to place limits on the number of Tom‟s visitors. In addition to Jan, Sophi, Jeff, Daisy, Emily, Adam, Kaye, David and me, there are Nick, Julianna, Karen Kramer and her assistant Maria Beige, Joel and Carol Levy, Tom's hausmutter Elizabeth Preusser and a constant stream of students from the Stanford-in-Berlin Program. Some (like Sarah and Cathy) come regularly and some intermittently. I think in the last couple days, all (approximately twenty) of the students have visited Tom at least once. Many have visited several times. When his friends come, we spend hours in the small visiting room talking to them about their families, boyfriends and girlfriends, fields of study, ambitions, and feelings for Tom. I find myself greeting, hugging, kissing and schmoozing with these young people as if they are part of the family. The nurses tells us that Tom can have only two visitors at a time. Meanwhile, the waiting room tends to back up with people who want their turn. To deal with the onslaught of love, I have had to assign time slots and maintain a queue. However, this doesn‟t always work because Tom sometimes needs to sleep. At other times, he wants to see particular people, even though it isn‟t their turn. We let certain busy people, like Rabbi Teichtel and Joel and Carol, jump the queue. It is hard to manage all of the people, and we don‟t want anybody to feel slighted. But the logistics are complicated. Sometimes people have to wait several hours in order to get their twenty minutes. Tom is never without company. Whenever he has enough energy, there are people here to see him. Some of the nurses, not to mention other patients who, it must be remembered, are still very sick, are getting annoyed by the noise, commotion and constant traffic. Ironically, here in Berlin, Tom has far more visitors than he would have had in NYC. In New York City I myself would have had other responsibilities to attend to. In Berlin, I had nothing else to do but be with Tom. The same was true for all the out of town members of the team. June 4th Every morning, after a wonderful buffet breakfast at the Hotel Berlin, I take a taxicab over to the hospital, arriving around 8:30a.m. or perhaps 9:00a.m.. I spend the whole day in the hospital, although after lunch, it gets pretty hard to see Tom at all – the number of visitors is too great. While others are visiting him, I walk laps around the hospital grounds. I am always recruiting walking companions, sometimes Sophi, Adam, Jeff, even Daisy and Emily on occasion. Throughout the day, one or more of us would go out to buy fresh and dried fruit, nuts, ice cream, candy, kabobs and other things to satisfy Tom‟s phenomenal steroid-induced hunger. We always bring presents for the nurses too. We stay at the hospital until about 8:30p.m. or 9:00p.m. every evening. When they kick us out, we walk across the street to the tratorria for a beer and good eats. When we finish, my roommates and I take a cab back to the hotel, and the calls start coming in. 10:30pm or 11:00pm in Berlin is 4:30pm or 5:00pm in New York, and everybody wants updates. Of course, I talk with Jan throughout the day. There are faxes, flowers, and notes. With luck the phone calls end and I can get to sleep by about twelve thirty in the morning. And so the routine continues day after day. June 6th My friend Frieder Duenkel (another professional colleague), who lives a couple of hours away from Berlin, has asked me to come and stay for a weekend or at least a night. I know it would be helpful – The long 48/9 8

days at the hospital and the single focusedness of my life are driving me crazy. Yet I could not say yes, and bring myself to leave Tom. I know I would be too tense if I were not there in the hospital. In the end, Frieder and his wife Gertraude have come to Berlin to visit with us. They take a room at the guest house and manage to get us out of our routine for at least one very pleasant dinner in the old part of Berlin. I have never been lonely in Berlin, at least not in the sense of being alone and without company and companionship. I could not have asked for a better support network. But as the weeks roll by and Tom improved, Sophi and I are both exhausted, burned out, and depressed. I tell Sophi she should go home in a few days. It would be hard to soldier on without her. I have to get home and back to my life. Jan understands. She has been making plans to relieve me in Berlin in case we can‟t get Tom home soon. When would we be able to take Tom home? He is doing better every day. Now he is able to get up, dress and even take walks around the hospital grounds. But the doctors have to be sure that the brain fluid is draining properly and that Tom is fit to fly. We see Dr. Lanksch very occasionally, and his assistants are very green and won‟t make decisions without him. June 8th We have been in Berlin more than a month, Dr. Lanksch is about to leave for a two-week holiday, and if I don‟t get Tom out now, we will be here for weeks more. The hospital has started to empty out. Finally, at 6:00pm the day before he was scheduled to leave, Dr. Lanksch tells us that we can take Tom home whenever we like, even tomorrow. My wonderful friend and Dean, John Sexton, insists that we accept business class tickets for all of us back to New York City. And that‟s how we come home. Tom is lively and cheerful the whole trip.

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Chapter 11: Like 2 Peas in a Pod: An Exegesis on Brain Tumors
One of the hardest and most frustrating aspects to my illness was figuring out what all of what I was being told by doctors everywhere meant. No one was there to give me a basic course in oncology 101, and it took a long time for me to find the right questions to ask. As I regained more strength and started to take control of myself and my medical care, the definitions of words I had been hearing floating around doctors offices and hospital rooms began to reveal themselves, like pieces in a puzzle. There are so many new, special “cancer” words, and gradually, through questions, overheard conversations, and mental deduction, they all form a picture. I slowly work on my ability to look at the reports and MRIs, an experience not unlike looking at paintings or art as a complete novice without any training. I understand rough concepts, and every question I ask brings me closer to the truth. The term “cancer” means almost the same thing as “malignant”. Both benign and malignant tumors can potentially cause damage or kill, especially in the brain. However malignancies are generally much faster growing, and more importantly, only malignancies can spread through the body and metastasize. The difference between “malignant” and “cancer” is that while a tumor can be malignant and cancerous, a person can still have cancer without having a tumor site. The cancer cells can still be in the patient‟s system. Cancer doesn‟t go away until the patient has been in remission for a required amount of time, normally 15 years. Remission is when a condition – usually cancer, goes dormant. While it might still be present in the person‟s system, it is asymptomatic (has no discernable effects on the patient) With cancer, that means that there are no growing tumor sites that have been detected, and that cancer marker levels are stable and within normal (non-cancerous) human values. The brain is a relatively rare spot to have cancer. There were over a million new cases of cancer diagnosed in 1999. Of those, 16,800 were in the brain. (about 1.7%) Eighty-five percent of brain cancer cases occur in adults over 40 years old, and 65% of brain cancer cases in men (A scientific fact not yet adequately explained by doctors) In the remaining fifteen percent, most brain tumors are diagnosed in children up to 20. I was just 5 months outside this range when I was diagnosed. Brain tumor survival rates vary greatly depending on the type of tumor, its location inside the brain, its pathology, at what stage it is discovered, and what treatments are used. Some brain tumors have high survival rates, while with others, almost all patients are dead within 6 months. Even for treatable types of brain tumors, the rates of survival are typically lower than with other forms of cancer because of the added difficulty factor imposed by brain surgery. The added risk brain surgery necessitates can make brain cancer more survivable than a benign brain tumor; in the case where the whole tumor is not removed, malignant tumors can still be treated with radiation and chemotherapy, while benign tumors will require another brain surgery if they grow back. And there is also the chance that a benign tumor can mutate and become malignant. All tumors have indicators (analyzable under a microscope) of what kind of cancer or benign substance it is. Doctors can give very reliable guesses of what they‟re looking at simply by looking at stained slides of cells under a microscope. In my own case, the location and growth pattern, lack of defined types structures of cells, like fingernails and hair, and striation patterns of the cells eventually led to the diagnosis I was given: Germanoma and immature Teratoma- a malignant tumor with multiple components. While in Charite hospital in Berlin, I hoped to myself for the tumor to be malignant. My initial reaction would be that if secondary treatment was ever needed, it would be much more convenient to be able to do chemotherapy or radiation than another brain surgery. The tumor was right in the middle of my brain, and the risks I was running going under the knife once were severe. When the doctors told us that it was a malignant tumor, I watched my dad‟s face sink, lose composure, and hang off of him numbly. I hated myself for wishing for cancer. What had I done? Had I cursed myself? Had I wished for something bad, and had my wish come true? I felt the ominous suggestion of death from him at that moment, and I wondered if I was the one responsible for it. Now, cancer will always hang over everything I do, and always leave my life a big question. Will I be here in 6 months? Will the cancer come back? How do I protect those around me from the pain of failure, if it happens. 15 years is a long time – ¾ of my life so far. Now it means that I will have to live the next 15 years as if it could all be over next week.

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For a cancer patient, the battle is all mathematics. Oncologists have numbers for every type of cancer – how many lived 5 years, 10 years, 15 years, or more, and how many died. There are things that the cancer patient can do to help his/her odds, but in the end, the patient‟s chances of living cannot be defied. Whatever the doctors says the chances historically have been in the past few years, that‟s what they are, plus or minus a few percent allowing for homeopathic medicine and its effects. Cancer cells are distinct from benign tumors and other cells in the body because they do not age. Scientists have recently discovered that the protein(s) that control aging and limit the number of generations a cell can produce – the very foundation of the aging process – is damaged in cancer cells, and they can continue dividing in an unlimited manner. Unlimited divisions are prevented in the body because, like a photocopier, every time a copy is made, the quality goes down, and random mutations are introduced. I find it interesting that a device that we‟ve built – a photocopier, has some of the same constraints that biology has. All tumors, benign and malignant, are caused by damage to the cell‟s DNA. DNA strands can generally tolerate a certain amount of molestation and random flaws, but too much, and the cell cannot live. When a person gets radiation poisoning is that the DNA in his/her cells gets so damaged that the repairs can no longer make it work correctly. This causes the cells (and eventually the person) to die. Tumors share the body with their host, and grow using the same nutrients in the blood that healthy cells feed on, and while scientists know that the immune system helps you fight cancer (cancer in those with compromised immune systems grows and spreads much faster) if the immune system were all that was needed to fight cancer, it would not be a problem. Doctors and scientists are currently looking for a way to use the immune system to fight cancer. The hope is that if the can make the anti-bodies target cancer and really get the body‟s immune system working against it, someday, this may be a reliable alternative to chemotherapy and radiation. When I asked about what made a malignant tumor worse than a benign tumor the answer I got was because malignancies are much more likely to spread. “But,” I was told, “in the brain, a malignant tumor is sometimes better to have.” Malignant tumors can be treated with non-invasive techniques (like chemo and radiation) while benign tumors generally can only be treated by surgery. Because the skull cannot grow to accommodate a growing benign tumor, a patient with a benign brain tumor could potentially require another brain surgery every couple years as the tumor grows back. Furthermore, benign tumors in the brain have the potential to turn malignant, although no one knows how this happens or why. For patients with tumors in very important or sensitive areas, it means the tumor can be treated when surgery is impossible. Just being able to treat the patient without the necessity of opening the skull and exposing it to potential infection removes a risk from the patient‟s treatment. Once the diagnosis of cancer is confirmed, chemo and radiation are almost preferred to another surgery, which is unreliable (it is hard for the surgeon to know if he/she has gotten the whole thing out) and, as mentioned, risky. The diagnosis was “mixed germ cell tumor – teratoma and germanoma”. Despite the coincidence in names between „Germany‟ and „germ cell tumor‟ (which initially made me think that there was something specific to being in Germany about this tumor) germ cell tumors are tumors created out of the very basic fetal tissue cells (also called germ cells). Germ cell tumors are responsible for approximately 95% of testicular cancer and more than half of ovarian cancer cases. Starting in the late 1980s and early 90s, doctors began to find and document non-gonadal germ cell tumors. Before that, these tumors were fatal. Because they are so rare, and because of the lack of research and documentation until 20 years ago, non-gonadal germ cell tumors still have no “standard” treatment. Unlike breast or lung cancer, doctors are still discussing what combination of chemotherapy and radiation therapy (and maybe someday immunotherapy) is ideal. I had exactly what Eric Ehrenberg had had. It‟s fitting; I kept telling mom and dad for weeks while I was sick in Berlin that I was sure I didn‟t have a brain tumor LIKE ERIC, and here I was with the exact same thing. We had both been initially misdiagnosed, and by the time we got our relative diagnoses, I was almost dead from hydrocephalus and he was almost blind because the tumor had been pressing against his optic nerve. He had been through the tough trials of his treatment almost 8 years ago. Now it looked like it was my turn. Doctors theorize that germ cell tumors in males first start shortly after conception. The fertilized egg starts to divide like a twin, and for some reason, one twin stops growing correctly, very early on in the process, so the cells are still undifferentiated. The corrupted cell/twin then gets embedded in the other twin – often in the testes rarely in the brain, but almost anywhere is possible – and continues to grow at a slow rate (I didn‟t notice it until I stopped growing, which means I was growing faster than it was) Germ cell tumors are sometimes benign and sometimes cancerous. No one knows if they grow continuously or in fits and spurts, and whether in my case 51/9 8

the tumor first became germanoma or teratoma, and then one mutated into the other, or if they both started independently. Trying to find out information about the way tumors grow in the brain is impossible because when they‟re recognized, they are immediately removed. The German doctors had hypothesized that my tumor was an embryonic carcinoma, an embryonic type of germ cell tumor that is most often discovered in infants and children. Doctors in the United States will tell you that it is almost never seen in anyone over 16. It would have been very rare indeed if a tumor of this type had gone undiscovered in my brain for so long. The more basic (immature) a cell is, the more potentially malignant it is. That is because these types of undifferentiated cells are likely to grow wildly with no constraints on how it should grow. The more mature the tumor cell is, the more likely it will grow into a pattern of cells (like the fingernails found in some patients) and the less likely it was continue its growth indefinitely. Embryonic carcinoma is very immature and therefore very deadly (although highly treatable with radiation now) Germanoma and immature teratoma are less rapidlygrowing, but still cancerous, and mature teratoma is benign. I had been living my whole life with this testicular tumor in the middle of my brain, sitting in the 3rd ventricle, and never known about it – never had any reason to suspect it. As my parents did more research on my behalf as we approached chemotherapy, we discovered that what I had was at least related to what the biker Lance Armstrong had had, and that my cancer was being treated almost the same way (except for the biking part!) As mentioned, Teratoma comes in two forms, mature and immature. The mature teratoma is benign, the cells are differentiated; it is effectively just a „lump‟ that sits there and grows slowly. Sometimes doctors find these tumors trying to make fingernails or hairs inside mature teratoma when they do surgery. Immature Teratoma is malignant. Unlike mature teratoma, immature teratoma does not form structures like nails, or any structures at all- It just grows. Chemotherapy is not effective against it, but radiation is. Germanoma was the first germ cell tumor classified. Other types of germ cell tumors that now exist have special properties that necessitated a change in category, but germanoma is still the most common type of germ cell tumor. Germanomas are cancerous, however they respond very well to a new line of platinum-based chemotherapy drugs, that have brought the statistics for testicular cancer survival way up. Germ cell tumors are somewhat rare, particularly in the brain. New York Presbyterian sees about 10 germ cell tumors in the brain every year. There are few enough cases that treatment strategy for germ cell tumors outside of the testes is still being worked out, and it is up to the doctor to decide how much chemo, radiation, and whatever else the patient needs on a case by case basis. We will never get over the incredible coincidence of Eric and me having the same brain tumor, especially since it was a little uncommon to begin with. What was it that caused Eric and I both to develop this way? Could it have been something in the water? In many ways, the discussion was like the decision to have surgery in Germany – we lacked information, and all we could do is speculate. The types of tumors, benign and malignant, that can occur in the brain vary widely in their pathologies, growth rates, treatments, and survival odds. For some types of brain cancer located in fortuitous places, the odds of survival with modern medicine are mid eighty to ninety percent. With some other kinds, they are almost zero. No one knows why, but in the last 30 years, the numbers of brain cancer cases, particularly among middle-aged adults, have increased tremendously. Some people point to cellular phones or pollution, but the reality is that no one knows why this is happening, science so far has not been able to explain it. However, if I had been born 10 or 15 years before I was, I would be dead now. First, I probably couldn‟t have gotten a brain scan. The first CT scan was done in 1972. MRIs were not commonly available until the late 1980s, and even then, there was limited time on the machines for all the patients that needed them. Even if somehow my tumor were discovered, the techniques in anesthesiology and brain surgery required to remove the tumor from my 3rd ventricle had not been invented yet. And even if I could have gotten through surgery, the pathologists would not have been able to identify my brain tumor or be able to recommend post-surgical treatment. All of these technological improvements and advanced techniques have been invented in the last 20 years. Without them, I‟d be dead.

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Chapter 12: Where Am I?
“Ready Tom?” I step out of the hospital and smell the air. There is something different here; the world smells different, more alive, more transient, more real. We walk forward under the giant gate that leads into and out of the hospital, a roman arch richly decorated with sculptures of flowers and cherubs, spreading the feeling of health and goodwill to all who pass underneath. I am having déjà vu – I could swear I was just doing this. Was that just a dream? Was I dreaming about being Outside? I crawl into the taxi cab between my dad and sister. The feeling that I‟ve been here before sinks deeper into me. Where am I? How did I get here? Wasn‟t I just here yesterday? “Are we going directly to the airport, dad?” I ask. He does not answer, merely holds my hands within his, and presses my head against his shoulder. I am his responsibility again. Someday I will be able to understand and be around him as more than that – as a friend and equal, not now. The world has shrunken to a bubble in the back seat of a taxi now; it is all I know of and all I care to know of. Dad and Sophi and squeezing me tightly, erecting a wall of emotion around us out of which I cannot see. The outside world hazily flies by; I am happy to be in the bubble, surrounded by love. The taxi stops; we get out. We have reached the airport, in the heart of the urban jungle. I hadn‟t thought we were going to fly out of this airport, but it‟s not on me to get us home, and if they‟re happy with where we are, then so am I. “Ok Tom, we‟re home!” I look around. I‟m standing on the sidewalk next to my home in New York. Opposite me is Washington Square Park. Squirrels and children are running around. The entire scene looks just the way I left it. Is this my dream, or a fantasy? Am I really here? Once again, the feelings of déjà vu run through me. I shudder and step back at the sight of our entranceway. There is something wrong with what is happening; I was just at the hospital, right? In Germany – how did I get all the way to New York? We enter the building. The foyer is a lot bigger than I remember it, and there are people running in every direction. My vision swirls in circles, and I am too afraid to move without the guiding hand of Sophi to lead me after dad, who is making a bee-line at a counter down to the right of the hallway. He talks to an attendant and picks up our tickets. Lufthansa – the only way to fly home from Germany once you‟ve had a brain tumor removed. He is very tense; so am I. I wonder if I can survive this journey home. I wonder if my head will explode when we start to take off. I wonder … We are back to walking the other way down the hall. We pass the entrance and I say hi to our doorman Robert who waves to me. Robert doesn‟t look quite right to me, but before I have time to figure out what‟s amiss, we are moving on, towards our gate. We board the plane and I slump down in my chair. I am already exhausted, and we‟re still a long ways off. [dream on the plane] We arrive in London. We exit the plane last, letting those in a rush move by without damaging us (well, me). Dad tells me it‟s time to go, and we get up from our seats, leave the airplane, and begin to make our way through the airport to our next destination. I have no idea where we are going, I just hang onto Sophi for security. I am running on auto-pilot, and my battery is running out. Suddenly, we are walking around the hospital halls again. Everyone around us is wearing hospital gowns, and dad is marching me forward, to and fro. “Faster!” He commands, “further! Don‟t you want to get better? Don‟t you want to get out of here? We‟ve got to get to our next plane! Should I get a cart for you?” Everywhere, the eyes of the doctors and nurses and patients are on us. We continue wandering down the halls, further and further, further than we‟ve ever gone before. I don‟t know if I can make it; I close my eyes and listen to the beating of my heart, letting Sophi drag me behind. One day soon, I will be strong enough to leave the hospital hopefully. We should fly home soon. We arrive at our new gate. Dad passes the tickets to the attendant, and we stroll down the gangway, onto the plane. Once inside, I once again have that strange feeling of déjà vu. The interior of the plane now looks like the lobby of a building. I am in New York now, at a party for a friend of dad‟s. I am very tired; I just want to sit down and rest for a while. We take the elevator up to the sixth floor, and wander down the hall. The door at the end has a doorbell on it. I reach out and ring it… I sit down in the seat shown to me. I can‟t tell if I‟m in the apartment, or back on the plane, if maybe, somehow, I‟m in both places at once, or if one has already happened, and I need to find out which one. I look for dad to offer an explanation, but he is not there. I close my eyes; sleep takes me. 53/9 8

“Tom, don‟t you want to go for a walk?” I stir slightly, and my eyes creep open. I am lying in my bed. Somehow, I have been magically transported from the airplane to home, the soft, sweet comfort of my room and my bed once again. Am I dreaming? Am I really home? Where am I? What has happened. My eyes close, I still need more sleep. I need to conserve my strength on the trip home. Dad tries to keep me awake, but my brain won‟t let him. It is too overloaded; it‟s going to shutdown for a while. “Tom, wake up. How are you doing?” I open my eyes. My vision is terrible, and the room is spinning. Where am I? Who is speaking to me? “Tom, do you know where you are?” Am I still in Germany? Was all that effort to get out of the hospital, walk downstairs, get a cab, get a plane, change planes, get a cab home … I‟m not sure. Where am I. “I don‟t know, Charite hospital I guess.” “What? Think again. Where are you?” “I‟m in Berlin, right? Or did I leave? I really don‟t know… please, just tell me.” “You‟re in New York. In New York Presbyterian hospital.” What am I doing here? How did this happen? What is going on? “Do you know the date, Tom?” “December something?” Dad and more are standing with a doctor. Dad laughs, “look out the window. Does this look like winter? Do you have another guess?” “I think, maybe … no, I really have no idea. How did I get here? What is going on? I dreamed I was back to New York, but I‟m really here? And what am I doing in the hospital? How did I get here?” How did I wind up back in the hospital? I thought I was all done with hospitals. I thought I had left Germany. I must have imagined it. Maybe not. Maybe I‟m in New York now, but, but … How could all of this have happened? Won‟t someone explain my story to me? Am I still alive, or is this some sort of purgatory, where I‟m reliving scenes from my life? It all seemed so real, those memories. I was so sure, but now it all seems so distant. Will I ever make it out of here, where ever “here” is? How did I get here? Am I still dreaming? Was the whole trip back to New York a delusion? No, I don‟t think so. Normally, delusions aren‟t this cloudy and hard to figure out. They‟re the only things that make sense anymore. “Am I in the hospital to start my cancer treatment?” “No, you are recovering from surgery.” “What surgery?” “You don‟t remember? Of course you wouldn‟t. Let‟s see… It says here you had an emergent stereotactic CT-guided endoscopic 3rd ventrisculatomy.” “Another brain surgery? Did the Germans miss a piece?” “I honestly can‟t answer that for you…” “Hi Tom.” “Hello dad.” “How are you feeling.” “Terrible. Angry. Weak. Lifeless. ... How did I get here? I can‟t remember anything. I think I remember us leaving the hospital in Berlin. Did that really happen? How did I end up back here then?” “We‟re back in New York now.” We got to New York? I guess I remember… I remember some things, but a lot of it is just memories of my wild delusions. All of those memories are so mixed up in my head now. Which ones are real? I feel like meatloaf that‟s been run-over repeatedly with a truck. “Did I have another brain surgery here a couple days ago?”, I ask. “Yes”. “Why?” I ask. He tells me, “there was a piece of tumor left. It was causing fluid buildup. You almost died.” “What? The Germans said they got it all …” “They were wrong.” “Did the New York doctors get the rest of it?” 54/9 8

“No. It would have been too risky, and since we already know that it‟s a malignant tumor, and you‟re going to have chemo and radiation anyway, they decided to leave it and concentrate on eliminating the pressure build-up. Dr Bruce carved out a new channel to reroute the brain fluid around the tumor site. He said without the surgery you might not have made it through the night.” “How long ago was that?” “Two days ago.” “whoa…” I can‟t believe that I almost that I almost died – again. Just how many of these near-death experiences can I have before something terrible happens? I thought I had made it through the hardest part back in the OR in Berlin. The tumor is not going to let me go, is it? It‟s going to kill me. In the dream, I left the hospital so triumphantly, happy and strong and back in control. What a terrible nightmare to wake up here again. I had my life back for a second, but it was only in my mind. “Am I ever going to get out of here?” “Soon. You‟re lucky to be alive.” “When I do, won‟t I be back in the hospital again for chemotherapy and radiation?” “We‟ll deal with that when the time comes.” Will I ever escape these hospitals? Chemo. Radiation. I still have mountains to climb. The taxi makes its way down the west side highway, weaving in and out of traffic. The déjà vu has come back again, and I wonder how long it‟s going to be before I am back in the hospital, back repeating the same cycle all over again. The streets pass by outside, people and lights that I have all seen before. I have given up believing in the reality I‟m experiencing, and all of it‟s pain, setback, and continual scenes of hospitals, headaches, and disappointments. I distrust all of my senses, and the only thing I know for sure anymore is that the cycle of pain is not nearly over yet. It is only a matter of months, at best, before I‟m sure I‟ll be back in the hospital, back dealing with the cancer. We arrive home and I wave to Robert, our doorman. How long will I be home for this time? How long before I once again wake up disappointed?

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Chapter 13: A Mother‟s Trials and Tribulations
Jan Sweeney, the week of May 17th, 1999 When Jim and Sophi went to Berlin on May 18th, I immediately set to work to find information on brain tumors and to locate the best doctors for Tom. For once my trusty AMA Family Medical Encyclopedia was not much help. Over the weeks prior to Tom‟s diagnosis, I had combed it to find some diagnosis that fitted his symptoms, other than a brain tumor, to no avail. Furthermore the information on brain tumors was both very general and sparse. I had very little to go on, the preliminary diagnosis from the Berlin doctors of an embryonic carcinoma, was quite hopeful and they were quite confident it was benign. Fortunately both my brother-in-law Dan and my friends Robin Forst and Tom Bondy, were adept at finding information on the internet. Though much of what Dan found was also general information, it laid the basis for the detailed knowledge I learned later. We were able to find the German doctors preliminary diagnosis and were cheered. Tom and Robin had access to a medical research bank of dizzying detail, but this too was useful later. The trick was to find the knowledgeable medics. Here Tom was very useful because as a medical malpractice lawyer, he had extensive knowledge of the medical establishment in New York City, the good as well as the bad! But my first call was to friend Laura, whose sister, nephew and friend Dorothy had all been diagnosed with brain tumors. A call to Dorothy located a doctor in the US who recommended a doctor in Germany. There were two problems, the doctor was in Hamburg, a long way from Berlin and he was a specialist in tumors that did not include Tom‟s diagnosis. A dead end, but I had made the first step to learn up that there were many types of brain tumor, each with its expert oncologists & specialist surgeons, and Laura held my head above water while I explored further. Pretty soon the information was coming in faster than I could absorb it. The dean of the Law School, put me in touch with the brain tumor dept at NYU‟s medical school. Tom Bondy said the best brain tumor surgeon in New York City was Dr. Fred Epstein of Beth Israel. This was confirmed from another source. Eight years previously, Eric the oldest son of our good friends and neighbors Ron and Randy, in Ithaca, NY had been diagnosed with a brain tumor. Eric had survived but was severely handicapped, in part because of misdiagnosis of his case. Ron said if he had to go through it all over again, he would go immediately to Dr Epstein. I called and explained the situation to the Pediatric Oncology unit at Beth Israel, and was told that I should get the MRI‟s from Germany and bring them in for a consultation immediately I got them. Then came an unusual intervention. Sara the daughter of our old friends David and Carol in Vermont, was now a medical student at Albert Einstein Medical School in the Bronx. On hearing the news, she was distraught and poured out her heart to her advisor, a pediatrician who happened to have trained with Dr Epstein at NYU and who‟s husband Dr Jim Goldman was a pathologist at the Neurological Institute at New York Presbyterian Hospital. She suggested that we call her husband who arranged for a consultation with neurological surgeon, Dr Jeffrey Bruce, the expert in tumors of the pineal region, the center of the brain. Meanwhile the German doctor‟s had ordered MRI‟s of Tom‟s brain, a complete set of which were sent overnight by courier. They arrived at 11am on Friday May 21 st. With 3 sets of doctors to consult and only a few hours, I phoned each one with trembling hands. The folks at NYU were curt. Dr Kelly, the head surgeon would not look at the pictures on a Friday. They had to be left – with a check for a $125 not covered by insurance – and I would have to pick them up the following week after they had been read. This therefore had to be the last stop. A machine answered my calls to NY Presbyterian. I told the machine I had the MRIs and would like to bring them. At Beth Israel the efficient woman who answered, asked me some questions about the tumor and the initial diagnosis. “There‟s no point in your coming, she explained, if it is not one of the tumors Dr Epstein specializes in”. No point at all, I thought with sinking heart as I was put on hold, but the wait was brief and the doctor would look at them. I told her I was on my way. Stopping only to leave another message on the machine at NY Presbyterian and to call Laura to come and man my phone while I was absent, I took off like a rocket toting the heavy set of MRI‟s in New York summer heat, by 3 subways and a cab to the Uptown Beth Israel Hospital, just opposite the mayor‟s mansion. Almost immediately I was ushered into Dr Fred Epstein‟s comfortable office. Dr Epstein was composed as he put up the pictures on a light board. He explained that the tumor was not what the German doctor‟s thought. It was indeed a rare tumor, but one in which he was an expert. At the Beth Israel center they dealt with approximately one a month. Most of their patients came from outside the metropolitan area. The symptoms were due not to the tumor directly, but to the hydrocephalus. Indicating the MRI‟s, he outlined the huge tumor right in the center of the brain. It had been growing in the 3 rd ventricle of the crania-spinal fluid system for a long time, he said, with no perceptible effect because there are no nerves in the area and no brain 56/9 8

functions. Normally the ventricle would appear on the MRI as a long, flat deflated balloon. As the tumor grew the ventricle had expanded to accommodate it, like a balloon filled with air. Finally the tumor had grown across the exit, the spinal fluid was backed up like a reservoir and was pressing the rest of the brain against the skull resulting in the headaches and other symptoms. Inserting a shunt to drain the excess fluid could relieve these symptoms. The patient would then feel better and could fly safely to New York for surgery. Dr Epstein comforted me by saying both that he would do the surgery and that because it was so large the tumor was more likely to be benign. He did not recommend surgery in Germany because the rarity and size of the tumor called for special expertise, flying was safe and he had never heard of Dr Lanksch! Nevertheless if we did go ahead with surgery in Germany, he would also be willing to take on the aftercare. I was convinced Dr Epstein was the man, but I wanted the second opinion. I jumped in a cab a little after 3 o‟clock, right into the Friday afternoon mass exodus from New York City. The FDR drive, heading for the Tri-borough Bridge, was jammed and instantly the cab was in a traffic jam, The quick-thinking driver did a U-turn and crossed town to First Avenue,. All was well up to 148th St. when we hit another mass exodus heading for the George Washington Bridge. Dead stop, then a slow creep up to 158 th, and a convoluted route across town to 168th and Fort Washington Avenue, the location of the Neurological Institute. Even though I had been lucky to find a driver that was quick witted and knew his way around –a rare find in New York- The cab ride took an hour. To my amazement Dr Bruce was waiting for me. Much taller, much younger and much graver than Dr Epstein, he nevertheless told me the same story. He also said that the surgery was not new, but had been developed 30 years ago at the Institute. He also saw about 10 cases a year from all over the country. Dr Bruce gave me copies of several articles he had written on the diagnosis and treatment on tumors of the pineal region. Though tough going, the articles took my knowledge from the internet “general information” level, to a level of specificity far exceeding that of my general physician. I knew that Dr Bruce too would be a wonderful expert to do the surgery on my son. I had gone in short order from worrying that I would not be able to find the right expert to having to choose between two great doctors. The only problem now was to choose between them and get Tom home. It was too late now to get downtown to the NYU hospital by the 5pm deadline, but I did not care because I already had two good options. I pondered all the way back to Greenwich Village on the A train about how to make the selection. I called my husband in Berlin immediately I got back, but I need not have worried about this decision. Without waiting to hear from me, Jim had decided to go ahead with the surgery in Berlin. Tom‟s surgery was scheduled in Berlin for early on Tuesday May 25th. It was already 11:30 PM in Berlin and a holiday 3 day weekend. It was too late to stop it. My only option was to go along with his uninformed decision. My only choice was about which flight I would take to get there.

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I stayed in Germany only until Dr Lanksch declared the surgery completely successful and the pathology report showing a malignant immature teratoma with portions of germinoma had been translated. My son was frail and pale as a ghost but my husband wanted me back in New York to find more doctors for the follow up treatment. Armed with boxes of slides, the pathologist‟s report and the translation I climbed on a Lufthansa plane and returned to New York City. Now I had to find an oncologist, not a surgeon and again I was bombarded by advice from all sides. Even while I was in Germany, I was at work on the problem. From the telephone café, I called Jerry Skolnick, my husband‟s colleague, whose cousin Dr was top administrator of New York Presbyterian and who had a broad view of medical specialties in the city. He told me again that the Neurological Institute had a lot of experience with this tumor. Again the deciding information came from a serendipitous source. Julie Evans, a secretary in my department, had until recently worked for an organization in Boston that oversaw cancer treatment trials. She called her contacts there to find out who was the best oncologist in New York for Tom‟s diagnosis. The answer came back after a day - Dr Michael Fetell of the Neurological Institute at New York Presbyterian, the co-author with Dr Bruce on the articles on the diagnosis and treatment of tumors of the pineal region. Tom returned from Germany in triumph. After all the anxiety as to whether or not they would remove the external drainage of the spinal fluid, in the end they removed it and released him quickly. The last advice from the German surgeon was that Tom should check with a doctor in a week or two, but because the recovery and release process had taken so long, there were actually only a few days left before his appointments with Dr Fetel the oncologist and Dr Bruce the neurosurgeon at New York Presbyterian‟s Neurological Institute. On the day of his release (Friday June 11th) there was no longer time for a few days of recovery at the hotel. He went directly from the hospital to the airport, walked from the curbside to the gate, and through Frankfurt Airport and JFK without assistance, as my husband was fearful that Tom would not be allowed to fly if he asked for a wheelchair. Tom survived the exertions of transatlantic travel in great spirits. I greeted the travelers with a lobby festooned with paper garlands, with cake and champagne, and everywhere the flowers from friends and relatives. Angus the dog was ecstatic to see them all come home. Tom looked pale and dreadfully thin, but very cheerful and glad to be home, and we all sat talking in the living room until quite late. While concerned about what treatment was to come we were all so relieved that the surgery was a complete success and Tom was out of immediate danger. The next day, Saturday (June 12th), was marked with many visitors from friends and relatives, our old friends Carol and David came from Vermont, their daughter Sara and her fiancé, Tom‟s uncle Dan, his daughter Julia and his paramour Nancy and her three girls, Allison, Vanessa and Jackie. It was like a big party but with one problem – Tom could not get out of bed. He did get up to eat and with his father‟s encouragement took the dog for a walk around Washington Square, but all he really wanted to do was sleep. Natural, we thought, for someone who had suffered a brain tumor, surgery and a long hospital stay and an exhausting transatlantic journey. We all thought we would want to sleep too. Sunday (June 13th) the party continued but Tom was no more up to participating in the social life. Jim began to get anxious, he could see Tom was not only not improving, he was regressing. He remonstrated that Tom had more energy in Berlin and could take walks around the hospital grounds without assistance, was out of bed most of the day and holding court with all his visitors. But Tom said he felt fine and I still thought it was natural to be jet lagged and want to sleep. So did our friend Carol who was a nurse. We both blamed Jim for making Tom walk through the airport and not getting a wheel chair for the poor lad. By Monday, most folk had left, but Tom was not noticeably improved. He was hard to wake, wanted to take his meals in bed, and only walked round the square with Jim and Angus with an arm for assistance. Still, he still claimed to feel fine and said he did not have a headache so I did not worry, thinking it only a prolonged period of getting over the travel. But Jim was getting frantic with anxiety. Tuesday morning (June 15th) we got Tom up for the visits to the doctors at New York Presbyterian (formerly Columbia Presbyterian) Hospital. Between us we walked Tom to the subway station and caught the A Train to 168th Street. Jim was not at all convinced that the Neurological Institute was the best place to go, in part because of the distance – the New York Presbyterian Hospital is close to the George Washington Bridge and 58/9 8

about as far as you can get from Washington Square without leaving Manhattan. But the train service is very fast and Jim was very relieved that the trip took less than half an hour. We frog marched Tom through the tunnels and up to the doctor‟s office and were promptly thrown out by Dr Fetel‟s secretary Greta, for speaking out of turn. Tom slept on the train and in the waiting room. The wait was long and the hour arrived for the appointment with Dr Bruce, before we were even in Dr Fetel‟s office, but Greta fixed this little difficulty with her own brand of charmless efficiency. Finally we were admitted to the doctors examining room. This was the first time we had seen Dr Fetel, a stern, humorless man of about 50 with unruly graying hair and a tough direct bedside manner. Tom weighed in at 128lbs, rose to the occasion in walking in a straight line and hopping. His eyes were still wandering and unable to coordinate properly, but his reflexes were good and he could answer questions regarding where he was and what the date was. He told the doctor he was feeling fine and he was alert during the examination. Then came the bombshell. Dr Fetel looked at the post surgery MRI and immediately detected that a piece of tumor had not been removed and that the piece that was still in situ was still blocking the flow of the spinal fluid. His examination of the CAT Scan taken the day before Tom was released from Charite confirmed this diagnosis. He pointed with a pencil to the area of the brain where the spinal fluid should be visible, if it were draining correctly, but no light line of fluid could be detected. He explained that surgeons often think they have removed the whole thing, but they are looking into the third ventricle at a large tumor (in this case Dr Fetel estimated 6cm) through a 2cm hole in the corpus collossum. Because of the approach used by Dr , the piece of tumor blocking the exit to the 3rd ventricle would not have been visible during the surgery. The MRI done after the surgery had not been done with the die that highlights tumor material, and the doctor was inexperienced with the type of tumor and its location, so he had not seen the tumor on the MRI or CAT Scan either. On the good side, the remaining tumor piece was small and possibly the radiation/chemotherapy would take care of it. Greta made appointments for Tom to get an MRI of the brain and spine on Thursday at Presbyterian‟s facility on 60th Street and Madison Avenue, and off we went to see Dr Bruce. Dr Bruce was waiting, his office hours being already officially finished. Tall, thin and neat, Dr Bruce retained his boyish good looks and shy smile in middle age. He gave Tom the same set of tests and thought he was doing reasonably well by way of recovery given the time and the travel from Germany. Again Tom stayed alert throughout the examination. Dr Bruce assured Jim that he did not think the hydrocephalus could have returned in the time since the CAT Scan and some residual swelling was to be expected. He was quite complimentary about the German surgery, and agreed with Dr Fetel, that another MRI with telltale die was required. We would have to wait. Now we frog marched Tom back to the A Train at 168 th Street and were silent almost all the way back to the village, while Tom snoozed. I was devastated; my nightmare had been realized. I had let them go ahead with surgery in Berlin, by a surgeon inexperienced with this rare type of tumor, and it had not worked out. I was trying to work out how to live with this awful truth, my fault, my fault, my fault! But worse was to come once we got home and put Tom safely back to sleep in his bed. Over late lunch around the kitchen data Sophi asked for a report of the doctors‟ visit. I did not know what to say, or how to say it. I deferred to Jim. He reported on Dr Bruce‟s complimentary and upbeat report at length without mentioning Dr Fetel‟s bombshell. Eventually it became obvious that Jim was not going to tell Sophi the bad news. I gathered my courage to tell her that Dr Fetel thought that the entire tumor had not been removed and that the exit of the 3rd ventricle was still blocked. Jim jumped up immediately beside himself with anger. “What makes you say that” he exclaimed, “ I did not hear that. You are very negative, the surgery was good and completely successful.” He implied that I had made it up to support my argument for bringing Tom back to New York for the surgery. Immediately, I saw that I had been mistaken in perceiving Jim‟s silence on the train as his effort to assimilate the terrible news. He was so stressed and so totally in denial that he had not even heard it. My daughter on the other hand was irate, as she thought we were withholding the news deliberately. I am in trouble all round, with my husband, my daughter, but most of all with myself, how could I have let my son down so badly? 59/9 8

I resolve to be hard headed from now on. Jim has such anxiety and fear that he is not rational. He so wants everything to turn out well that he will deny reality. He‟s already done it in Germany. The fact that the doctor‟s here told me that Tom had a very rare tumor and that the surgeon should be experienced with the tumor, had had no impact on Jim. His mind was set on having the surgery over quickly, the tumor be benign and Tom back to leading the Stanford ski team next month. All his life Jim had got what he wanted by his own strong will. He thought he could control the course of this disease and the treatment through a determined and tenacious will. After all, it had never before failed. He believed that he just had to summon up new reserves of will and it would be what he wanted it to be. To me this was like an ostrich putting its head in the sand. Forced to choose between the health and welfare of my son and the comfort of my husband, in the matter of where the surgery should be done, I had selfishly, and for my own short-term benefit, chosen the latter. I resolved not to do that again, although I knew this would inevitably lead me into conflict with my husband at a time when we most needed a united front. Wednesday was entirely miserable. Everyone was unhappy and Tom could hardly stay awake long enough to be fed in bed. Only the following day (June 17 th) did I realize how fast he was sinking. Jim had arranged for Brenda, his masseuse, to come to the house and give Tom a massage. She set up the table in Tom‟s room, and we all helped get him from the bed and up on the table. During the massage he appeared to be sleeping again, but about half way through the hour, he said he needed to urinate. We all helped get him up off the bed and left the room so that he could go to the bathroom right off his room, but we made the mistake of not guiding him into the bathroom. As we waited in the hallway outside the door to his room, we heard with horror, the sound of peeing behind the door. We rushed in and propelled him into the bathroom. The wall floor and Persian tribal carpet were running with urine. As I cleaned it up with masses of newspaper and paper towel and soap, I asked Tom if he thought he was in the bathroom, and he answered “yes”. Now I was scared. Tom had had the same room and bathroom for 9 years; the door to the hall was no where near the bathroom. He was totally disoriented, a directions sleepwalker. The day was hot and sticky and Tom barely conscious now. We call Dr Fetel‟s office and alert him to Tom‟s declining state. The doctor still needs the MRI but will get the radiologist to read them immediately and Tom will be admitted immediately if necessary. The walk to the eastside subways was impossible, so we three piled into a taxi for a ride that took almost an hour to get to Presbyterian‟s mid-town facility on 60th Street. He is taken almost immediately, sleeping through the whole thing. We did not have long to wait for the results to confirm that the hydrocephalus had returned, and the expected decision to admit him at 168th Street. No one seemed overly concerned about Tom‟s state however, there was no sense of urgency and no one suggested that perhaps an ambulance should be called. We frog marched Tom once more out on the street and tried to hale a cab. But it was now almost 3pm on a Friday afternoon in July in midtown Manhattan. There were no cabs on 60 th street. We headed for 5th avenue and lost an argument for a cab. Then nothing, only off-duty lights, and of course Tom had to be held by one of us at all times, so we had no mobility. After what seemed like an age, I approached the doorman on the Pierre Hotel and told him the situation and he offered to help me find a cab, which he did in short order and refusing a tip from the grateful mother. The cab of course is going the wrong way down 5 th avenue. I instructed the driver to turn onto 59 th street going west, but either he couldn‟t or wouldn‟t. We were in a very nervous state now and the driver did not seem to know where New York Presbyterian Hospital was. I tell him 168 th street west side, but he insists on the avenue, and when I finally remembered Fort Washington, of course he did not know where that was! The traffic was terrible and while we succeeded in getting him to turn west on 57th street, we were not making much progress. With the weekend traffic heading for the GW Bridge, we realized that it would take a long time to get to 168th street by cab on a summer Friday afternoon. Now the distance of the hospital was significant. We charged the cabby to go to the Columbus Circle A Train subway stop and supporting Tom between us got to the platform. Then we waited and waited and waited, 20 minutes in hundred-degree head with huge crowds of people. The crown surged for the train when it arrived, no seats and Tom‟s not capable of standing. A wonderful lady made a space for him. A black youth sitting next to him was only concerned that Tom would 60/9 8

throw up all over him. I assured him that Tom was very sick, but was not going to vomit. The lady told the youth he should stand and make way for me, which he ultimately did. The train was air-conditioned and a relief. Tom was an automaton. Finally we arrive at 168th; the tunnels through the station are long winding and hot. The one block to the Neurological Institute seems endless. “How is Tom doing this”, I thought, he was now like a zombie. Greta met us, and told us Dr Bruce has been called, we were to go to the Milstein Pavilion, just round the corner. Although there is a way to go without going outside, we elect the outside route as more speedy. Greta suggested a wheel chair for Tom, but we did not want to wait for it. Just as well, before we arrive at Milstein Tom urinates in his pants. He‟s virtually unconscious now and has lost voluntary control over his bodily functions. We sat in admitting with Tom soaked and smelling, while a clerk fills in forms and Jim is beside himself with anxiety. He is shouting now at everybody in site and demanding to be sent up to the ward. He expressed his disgust with the sloppy ways of the 3 rd world staff and wished he were back in Berlin with its Teutonic efficiency and blond nurses. Nothing is now as he willed it. Finally an orderly with a wheelchair appears to take Tom up to the ward. Just as we remove Tom‟s urine sodden pants, the nurse shouts at us to get out of the room, that the room assignment was a mistake. Jim continues to undress Tom, and is so outraged that he would have punched her had she been male. But we did have to move out and wait again for another room assignment with a different nurse and for a good reason. That nurse already was assigned to another patient with the surname Jacobs. Having two patients with the same name result in confusion and errors and is forbidden. Once settled in the room, Dr Bruce arrived. Tom was immediately prepped for emergency surgery to reinsert the external drain into the third ventricle to relieve the hydrocephalus. Dr Bruce directed us to the waiting room and told us, he would report to us in a couple of hours. It was 6pm and we had not eaten since breakfast. We found the cafeteria, but I could scarcely eat. Jim was able to eat for us both. At about 8pm Dr Bruce returned with the news that Tom was awake in intensive care. He said that without the emergency surgery Tom would not have lasted the night without a brain hemorrhage or stroke. How come Tom kept telling us he was fine, and never reported a headache? Much later we found out that the patient with hydrocephalus cannot give an accurate report of their condition. They are in effect, not fully conscious and mercifully if misleadingly think they are OK. Before going home, we visited Tom, once more tethered to an external drainage system, pink spinal fluid filling a little plastic bag. He was awake but groggy. When asked by the nurse, he knew where he was and what month it was. We went home relieved. Tom was scheduled for more surgery the following morning – we were later to find this was a stereotactic 3rd ventrisculotomy. Essentially, the surgeon uses a stereotactic laser to dig a relief channel to drain the fluid from the blocked third ventricle, into another part of the spino-cerebral fluid system, so it can keep circulating rather than damming up and causing hydrocephalus. There is still a slight back up in the third ventricle that causes it to be much larger on an MRI than it would be for a normal person, but no hydrocephalus to worry about. Until recently, a person with this problem would need to be fitted with a shunt – plastic tubing threaded from the third ventricle in the middle of the brain, down the neck and into the abdomen, where it drains with other body fluids. Shunts have several disadvantages, including risk of failure, infection and spreading of cancer cells to the abdomen. For access to the new complex surgical techniques, which made the shunt obsolete, we were very grateful to be at a major teaching hospital and for the skills of a surgeon like Dr Bruce. After the surgery on Saturday morning (June 18th) we all returned to the hospital and after asking for Tom Jacobs were directed to the ward room next to the one from which we had been summarily ejected by the nurse the previous day. We had been directed to the wrong Jacobs, Tom was still in intensive care following the second surgery. The nurse was proved right! Once again, Tom claimed to feel fine but he looked worse than ever with his head swathed in bandages and the remaining hair tangled and spattered with blood. Furthermore, he seemed confused about what time of year it was, variously claiming it was November, February or December, and not able to hold July in his memory bank at all. Was he pulling the nurses‟ chains? I don‟t think so. He 61/9 8

remained as courageous as ever, but looked and sounded very worn. Maybe he was just teasing Sophi and her friend Daisy. We are all looking for light relief. Sunday Tom was moved back up to the ward with a wonderful view of the Hudson and the George Washington Bridge, which he cannot enjoy. Under the influence of steroids, which reduce swelling and shrink the tumor, his appetite returned. Jim was sufficiently relieved to go out to the beach to visit with Bill Borenstein and Laura Nowak and their family. Danny, Nancy and her kids arrived from New Jersey; they actually benefit from the proximity of the hospital to the GWB! Jim Goldman and his wife who first put us in touch with Dr Bruce and Dr Fetel paid a visit, Sophi and Adam were also there until dog walking called, but the best part of the day between the eating was reading aloud a Tony Hillerman mystery story. How banal and blessed it was. Tom was released from the hospital June 21st. His appetite was now enormous. By mid- July he had gained 30lbs. A further MRI scan of his head and spine to see if the malignancy "seeded", showed no other tumors, a which reduce swelling and shrink the tumor although a spinal tap showed high levels of the chemical markers for immature teratoma/embryonic carcinoma. Although delayed while Tom recovered from the second batch of surgery, and while he built up his body weight, ultimately Dr Fetel decided on 4 cycles of chemotherapy, over12 weeks. Chemotherapy does not damage his brain function and therefore is preferable to radiation. And what of my resolution to defy my husband and stick up for my child? I was not at all a success. Jim was tense, anxious and baffled that I should defy him at this point in time. He still wanted to control the disease with his will. He was so bewildered and angry that Tom had been sent home from Germany still at risk to his life that he found unlikely scapegoats. Carol Buchdahl, for example, was to blame for the dreadful events of the week of June 11th because she had tried to reassure him that Tom was only suffering the effects of jet lag. My insistence on the factual record of the failure of the German surgery was to Jim, my need to lay blame on him. Many quarrels ensued which were especially distressing to Sophi. We talked of therapy with some friends, got recommendations, but in the end Jim could not bring himself to admit that we could not handle all this. Jim‟s impatience with the slowness of delivering further treatment was explosive, but once chemotherapy began he took charge of the treatment by going to virtually every session with Tom and only allowing me to go whenever he could not go and could not arrange for someone else to go. He also took over the alternative medicine treatments that New York Presbyterian offered. One of these, involving relaxation, meditation and envisioning a cure, occurred prior to the start of chemotherapy. Tom, always anxious to please, found the session with the councilor intensely personal and the envisioning hard going. He consequently did not replay the tape of the session, as the therapist suggested he should, before the chemotherapy began. On the Sunday before the chemotherapy began, Jim arranged a trip to his brother‟s house in New Jersey. It was very hot and they have a wonderful pool. When we got in the car, Jim brought out the tape and insisted that Tom listen to it as directed. Tom protested that the session was very personal and he did not want his parents and sister to listen to it. Still Jim insisted. I raised my voice, but timidly and was instantly silenced. In a totally tense environment we all listened to Tom‟s intensely personal “relaxation” tape. The experience simply heightened all our tensions, most critically Tom‟s. But again I was mortified for failing to protect my child. The next day, I contacted a professional therapist friend for a referral. The next week, in secret from my husband, I entered therapy for the first time in my life.

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Chapter 14: From Inpatient to Outpatient, New York Style
Mid-June The doctors are amazed at my resilience. Four days after emergency brain surgery, I am discharged from New York Presbyterian, and back we go into the subway. Along the way home, we stop at 72 nd street to visit a wake for Arlene Skolnick, whose mother just died at age 90. I don‟t know anybody at the reception, and I don‟t feel very social. I look and feel terrible. The large metal staples in my head parallel the way I am feeling – jury-rigged, weak, and ugly. I just want to be home now, and I shouldn‟t have to go all over the city like this the same day I get released. I munch some cheese and crackers and stay mostly to myself. An hour later, we are back on our way home. Mom and Dad help me as we exit the train, leave the station, and round the block to the front of our apartment building. Home at last. It feels great to be back to my own room, my own bed. Angus the dog comes over to cheer me up. He is curious about me, curious about the stables holding my skull together. He licks me on the face, and sniffs me out, barking intermittently in a cheerful way, saying he is glad I am back. I still have to get through chemotherapy, but my inpatient days are over. For the first time in a long time, I don‟t feel like I‟m in serious jeopardy of dying. Now I‟ve got to figure out how to restart my interrupted life. I‟ve got to be an outpatient. I did not realize what it meant to be an outpatient until I already was one. For me, it is back and forth to the hospital for MRIs, blood tests, spinal taps, and consultations. At the same time I try to re-establish some kind of life beyond treatment. I hadn‟t been home with my parents for any extended amount of time since high school. I was a young, independent adult when I landed in Germany a few months ago. Now I‟m a dependant child again. How could I reestablish a relationship of equals? What am I going to do every day? My high school friends are scattered throughout the country. Those few friends in the city – a precious few – I don‟t know how to contact. I need new friends, new activities, and a new energy. I must create a whole new „me‟. How do I create a life outside of my family, and outside my cancer? How do I start my new life? “Let‟s go Knicks! Let‟s go Knicks!” Madison Square Garden is bedlam. Game 3 of the Knicks/Spurs NBA finals, just three days since leaving the hospital. I have never been to an NBA playoff game before, let alone the finals. This is a “must” game for “us” – the home team New York Knicks, but for me, it is survival. Even with earplugs in, I am being assaulted from every side by the noise and the pandemonium. There are about ten thousand times the number of people I‟m accustomed to having around me. All of the people, the noise, and excitement surrounding the game are fantastic, but together, its more than I can handle. The place is jam-packed, and everybody is on their feet, yelling, urging on the Knicks. My brain is not firing on all cylinders, my eye sight is worse, and while I am trying to remember and appreciate everything, only a small part of what‟s happening is registering with me. Nevertheless, I am having a great time. I am dancing, singing, screaming, swept up in the pandemonium. If Walt (Clyde) Frazier, the Knicks announcer and former superstar(who is prone to rhyming in his color commentary) saw me now, he‟d say, “To m the bomb is hopping and bopping, dancing and prancing!” I‟m at the center of the NYU law school Knicks group, led by Dean Sexton and the fanatic Linda Silberman. The tickets were a gift from Ron Noble, who is in Europe campaigning to be the Director General of INTERPOL. This is my dad‟s NYU family, and I‟m a hereditary member. Dean Sexton calls over Bill Saunders, a former NBA player and later an NYU coach, to look at the staples in my head, and it give me a pat on the back. It feels good. It‟s wonderful to still be alive. In the fourth quarter, the Knicks, despite the clamoring crowd, are unable to close the Spurs‟ lead, and they lose by seven points. Dad has his arm around me practically the whole game and on the train ride home. We get home and I collapse. It was great. I lie on the table half asleep, listening to the mellow new wave music in blissful ecstasy as Patricia massages me. Every spot she touches is sore, the muscles knotted and atrophied from a month and a half of being confined to bed. Thanks to Patricia, my bed sores have disappeared, and my body is regaining some flexibility and life. When I first came out of the hospital, my body was so sore from inactivity and misuse that I could barely move. Since starting a massage regime with my father‟s masseuse, my body and my muscles are starting to be realigned correctly, and areas that have been twisted, tired, and unused for months are finding relief. After every massage, my body feels better. Not only does my body feel more limber and relaxed, but with 63/9 8

each massage, parts of me that have been dormant, almost lifeless, are reinvigorated - massage is re-energizing me. As my body untangles, my circulation works better, and blood and energy can get to the areas where they are once again needed. Simultaneously, the toxins that have built up around my body because of my recent lethargy are being eliminated from the system during massage, flushed away in sweat and urine. Massage makes you lose a lot of water, and in my case, every time I have a massage, I feel like a snake who has shed a layer of skin. It is a fresh start for my skin, my circulatory system, and my energy. Gradually, my body is feeling better. Massage is part of my schedule of getting back to full health. Twice a week, Patricia comes down to our apartment (a 5 minute ride on the subway) and for an hour, works on my body, my back, my legs, everywhere. Since my first massage, which was excellent, every subsequent massage has just been better and better, and I am really feeling improvements now. For the first time in months, I am waking up in the morning everyday with more energy instead of less. While massage is wonderful for my body, I do it because it feels so GOOD. And after everything I‟ve been through, I deserve it. “Um, do you have any ice cream?” I am in suburban New Jersey, visiting my uncle, his significant other, and their 4 girls, my cousins. I am treating their house like an all-you-can-eat buffet, and the parents are trying to speculate how long I will keep eating everything in sight before I finally reach my limit. Hot dog after hot dog, spoonful after spoonful, I am never sated. No matter what I eat, or how much, I always have room left for the next thing - anything I can get my hands on. The looks on my relatives‟ faces tell a funny story. They are happy to see me as strong as I am, but they‟re also getting worried that they might run out of food before I am finished. The steroids that I‟m on, Prednezone, have increased my appetite tremendously, and I am constantly hungry. Even after I stuff myself, 45 minutes later, I am ravenous. I need food constantly. My mom tells me that she thinks we should install a conveyor belt system to keep the food flowing into our refrigerator and into my mouth. Mom needs a team of carriers to shop for groceries for me; one person is not enough. Not only do I eat a lot, but it all tastes so good! Everything I eat tastes better to me than it has ever tasted before. Does anyone want seconds? I do! “Now what the hell is that word?!” “I don‟t know, but I know it‟s a word, and I‟m counting it!” The lunch time Scrabble games with Jessica Henry, are highly competitive affairs, usually escalating to threats of physical violence before the game is over. I usually end up winning anyway, but we both play to win, and we often argue, in a friendly and light-hearted way, about what words can and cannot be used. Every time I am feeling comfortable in my lead, Jessica comes up with a non-word she claims to have seen in a computer game. “Don‟t you have any shame in claiming words that you‟ve never actually heard or used in a conversation before?” I ask, incredulously. “Absolutely none at all,” she declares with defiance. “Words” like „ac‟ and „aec‟ often blight the board. I give her a withering look, but she is determined to have her stupid word, so I let it go. A funny thought strikes me: This same conversation used to take place between father and me, with the roles reversed. In the games I have with him, I am always looking for some marginal word like „fruiting‟ that will score me a lot of points, but that pushes the boundries of the English language. Dad always threatens to stop playing when I do this, so I have to pick up the tiles and try again. He would never let me play this word, but I‟m more generous with Jessica. My philosophy with scrabble is, if the person really wants the word, let them have it. If he or she beats you with those crummy words, it doesn‟t matter anyway. I acquiesce. “Sure,” I say to Jessica, “take the points. Have the word. Whatever.” Jessica is a former student of my father‟s. She is about thirty, married, and works as a criminal defense lawyer. Unfortunately, Jessica has been home for months with carpal tunnel syndrome, which has gotten so bad, she is unable to type or push on anything with her hand, fingers, or wrist. She needs a wrist brace to write. She is on a disability leave, so we both have free time on our hands. Despite her spunk, Jessica is suffering. It‟s hard not working, being disabled, going through physical therapy, not knowing when or if she‟ll get better. Whenever we go out, we ask each other about how our respective recoveries are going, and there is a level of kinship that can only be found by someone else experiencing the same sorts of problems and issues as you. W go out for afternoons together about once or twice a week. The afternoon starts with sushi lunch, with Jessica (a devotee of sushi) in charge. She knows the best places, exactly what to order, and exactly how to eat it without looking like a fool. She is a pro. After lunch, we head back to get our Scrabble on.

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I was good at scrabble before becoming ill, and now it is an enjoyable way to pass the time. We compete, argue over words, listen to music, and support each other in our convalescence. I am feeling stronger mentally and physically, and my eye sight is slowly coming back to a useful point. I can go outside without feeling helpless again. It is a wonderful afternoon. After the scrabble game is over, I walk Jessica halfway back to her apartment on the east side, about a 15 minute walk. Angus, of course, comes with us. He is happy to be going out and happy to be with the people, wherever we go. His favorite spot is in the car, where he can keep close tabs on his whole family all at once. Even if we get out of the car, he is unworried. He knows that the family must always come back. Since the middle of the summer, I have been feeling well enough and strong enough to start walking Angus again, which I now do at least once or twice daily. Since I am living at home wi th no other diversion besides TV, walking the dog has become a pleasant stroll a couple times a day that gets me out of the house. I am trying to push myself to go out and walk even when I‟m tired. It is easy exercise that is know is helping my body come back. I also enjoy walking with Angus as he jerks left and right, trying to sniff everything. It amazes me that the dog has walked around this square probably thousands of times, and he still finds in interesting every time. He is still finding new things to sniff, and is constantly on the lookout for little scraps of food that litter our sideways. Even though he is getting to be a middle-aged dog, he is still a little rascal, and we love him. “Oh my God!!! Did you just see that?! Donkey Kong just gave me the Goddamn move!” Sophi and I are once again playing Mortal Mario Kart, where two siblings enter, and one leaves. Mario Kart is a great video game for the Nintendo 64 that Sophi has borrowed from Adam‟s brother. Sophi and I are now addicted, and everyday when she gets home from work, it takes about five minutes for the challenge of a Mario Kart duel to go out. What started off as a game for both of us has turned into an obsession for Sophi. She is beginning to crack under the disappointment of getting whacked with a turtle shell or being bumped or blasted off the track. Sophi has started to take the game personally, and it doesn‟t take long for her to issue me a warning. “Oh my God! You just gave me the move! I swear, Tom, if you do that again I‟m going to frickin‟ kill you!” The move is where I or any other computer player use a weapon against her that causes her some disaster. She is obsessed with “the move”. After a couple games, she is so stressed out over what she perceives as the unfair targeting she is subjected to, that I have to turn the game off before she loses it. “Hadi om, hadi om, hadi hadi hadi om” The room repeats the yogic chant back to the class leader. I am not sure if „om‟ actually has a meaning, or if it is just a mantra to focus thoughts and breathing on, but the chanting is soothing. We continue to repeat the mantra, echoing back the yoga instructor‟s words, letting tension out of our bodies. The lights are all off, and my eyes are shut. I love the way the chanting affects me. I feel peaceful, good, and refreshed. My chant is in unison with the rest of the group, and the feelings of energy and calmness sweep over us. It‟s 9:30 PM, past my selfimposed bedtime. The first time I went to yoga class, it was to just get a taste of what it was like. My dad was very anxious that I not let my body atrophy, and that I do a lot of stretching and light workouts. Yoga fit this description, and when I went to the class I really enjoyed it. Between the stretching and the chanting, I left that first time, and every other subsequent time, feeling calm and good, much better for it. My yoga partner is Elana Weinstein, my dad‟s secretary and a part-time masters student in music therapy at NYU. From the nether regions of New Mexico, she is one of the nicest people I have ever met. She also had been going to Yoga classes and offered to take me to my first when she heard about my brain tumor. We feed off of each other‟s enthusiasm. By ourselves, maybe we would probably not be as committed, but together, the peer pressure keeps us going, week after week. “I just hope no one is filming me here,” I think. “I look ridiculous.” I‟m not ashamed of being in a yoga class. I‟m proud of that. But I am so inflexible, and for a lot of poses, I can only do absurd imitations. “I‟m not here to look pretty,” I think, “I am here to feel good. I don‟t care what I look like. It‟s working.” I am back at the hospital, and Dr Fetell is checking me out. He measures my breathing, heart rate, and eye response. While the eyes have gotten a little better, they still do not focus up properly. Fetell asks me to step on the scale. They want to make sure that I am eating well and absorbing the nutrients, and that the steroids are doing the job. As I step on the scale, Dr Fetell skims through his notes and 65/9 8

sees that a month ago I weighed 121 pounds. Starting at my old weight, they adjust the scale to where I am now, and marvel- 152 pounds. In one month, I have gained 31 pounds! Dad comes in the front door. He‟s moving with speed and purpose, and I can tell that something decisive and probably scary is about to happen now. He comes over to the dining room table where I am sitting and slams down a stack of tickets. He‟s got shows, dance, theater, concerts, opera, it‟s all in there. My first impulse is panic. Why can‟t I just be a normal patient, lie in bed and have people bring me chicken soup? There‟s no way I can do all of this stuff. I am trying to be active, but I can‟t handle all of these events, particularly the long evenings out. Dad stares at me with the eyes of a lunatic, imagining all the opportunities I‟ll have to “increase my human capital” (that‟s what he calls it) in the next couple months. Something triggers inside of him, he sees how scared I am of all the things he‟s gotten for me, and he laughs at himself and how overboard he has gone this time. He tells me that whatever I want to go to is fine, and that I definitely don‟t need to go to everything. Whatever I don‟t have energy for, I can of course skip. “We want to make this outpatient period as positive as possible.” “At first I was afraid, I was petrified…” The woman on the stage sings for us while we eat a wonderful Chinese dinner. It is a beautiful, romantic setting except for one thing: None of the women are actually women. Yvonne Chow has escorted me to Lucky Cheng‟s, the restaurant we are at. Located in the lower east side of Manhattan, it is famous for good cuisine and a great floor show. It‟s main attraction: All the waitresses are transvestites, who dance and sing and cross gender lines to deliver not just a good meal, but a night of levity and mirth. All of the waitresses look very feminine, and while I can tell here in the restaurant that they are all men, I think under different circumstances, it would be easy to take them for gorgeous young Asian women. The show is hilarious and mesmerizing. The men play their female parts convincingly, and the atmosphere between the waiters/performers and the diners/crowd is wonderful. They promised it would blow our minds, and it has. Mom and I are at Lincoln center. We have come to the New York Film Festival, and the movie we‟re going to see tonight is the premier of Kevin Smith‟s new film, „Dogma‟. I have loved Kevin Smith‟s other movies, „Clerks‟, „Chasing Amy‟, and particularly „Mallrats‟, one of my favorite brain dead movies ever. While I don‟t care for many Hollywood actors or films, „Dogma‟ stars a large assortment of my favorite stars, and I‟ve been looking forward to seeing this film here for months. I am a huge fan of Chris Rock and I am constantly retelling his jokes to friends. I have hours of his material indelibly inked on my brain, and I am hoping that after watching this film, I will have more. Also in the cast is actress/model Selma Hyack, one of the most beautiful women in the world. I have a poster of her from a clothing ad in Berlin. She is in a bikini looking seductively at the camera; she looks like she‟s just about to strip her bathing suit off. I have come across these tickets by way of my dad‟s colleague, Linda Silberman. Every year, Linda buys a subscription to the whole film festival. This year, Linda has given me about 5 or 6 sets of tickets as a present, a token of the support she has given me during my whole course of illness, and particularly now, with chemotherapy. I‟ve never been to the New York Film Festival (or any other film festival) before. For what I gather, critics select a variety of interesting pieces out of a sea of films submitted to them. Many of the films are foreign, and almost none of them have been produced by Hollywood studios (although some will undoubtedly be marketed by them). These smaller independent films are given a big boost by being shown at a film festival, where critics and movie-goers alike are looking to be the first one to see the next big hit. The New York Film Festival screens its movies at Lincoln Center where the classical music and opera goes on at night. The concert halls are beautiful, and audience members dress in fairly formal attire, as if they were going to see a concert. Chemotherapy started about 8 weeks ago, and it has sapped almost all of my strength. I need a lot of sleep, a lot of patience, and a lot of activities that do not require exertion of energy – nothing even remotely physically active, (although my dad is always trying to get me to go to the gym, and chemo doesn‟t seem to work for him as an excuse). The film festival is perfect, because even when I am exhausted, film-watching is easy entertainment. Linda‟s present helps me to keep more things in my life than just chemotherapy. Without these diversions, I think I‟d be going insane. Not surprisingly, the red carpet is out tonight. The stars of the movie, are here to introduce and talk about the movie. People are lined up 3 or 4 rows deep along the celebrity entrance to catch a glimpse. Behind 66/9 8

and off to the side, a group of Catholic protestors are denouncing the movie, “Dogma” as heretical, and imploring the crowd to boycott it. What a scene! As mom and I enter the hall through the doors for the common, non-celebrity folk, we notice someone entering through the celebrity entrance right next to us. We glance over, and the next thing I know, an invisible force throws me back against the wall, my heart palpitating and mind in outer space. I can‟t speak. “Who was that gorgeous actress?” “That was her, mom. That was Selma Hyack.” “Let‟s go Yankees, let‟s go!” We‟re on the upper deck of Yankee stadium, just on the out of bounds side of the right field foul pole. I have never been this high in the stadium before, the view is amazing. While I have been to the stadium several times this summer, this is my first ever World Series game. The whole stadium is filled, every seat, and the whole place is erupting, in much the same way that Madison Square Garden was for the Knicks. While from up this far, it‟s not quite as loud as that basketball game was, the huge partisan crowd makes the air reverberate all around with energy. The atmosphere in the crowd is electric, and every pitch is a crescendo of excitement. We trail most of the game, but tie the game in the eighth inning and win in the ninth when Chad Curtis hits a home run. As soon as he crosses home plate, police start streaming onto the field to protect the players. Frank Sinatra‟s “New York, New York” booms over the loudspeakers. The game is over, we have won, and the fans go home happy. I circle the Federal building and look for a better way in. The only entrance I see has a half hour line outside to get through security. I‟m late for my meeting with the FBI. This is not going to make a favorable impression. There is no other way in, so I wait my turn, and kick myself for not coming earlier. I have come to speak with Ed Stroz, the special agent in charge of the computer crime unit of the FBI about an internship in electronic counter-terrorism. Dad brokered the meeting, after he met the special agent at a law school event. He came home, told me all about the program at the law school and his conversation with Ed Stroz from the FBI. He said that if I got a job with the FBI, they would probably give me a gun. My eyes widened. “Really?” I asked. He started cracking up. “No, I really doubt it.” In any case, it would be nice to be an intern, do something other than go to the hospital or watch TV. I don‟t know how much I could do for them, or in what capacity I would be working, but it will be a diversion for me from worrying about doctors, treatment, and cancer. It will help me get my mind rolling again. The interview takes place over an informal lunch at an American style diner around the corner. Ed and another senior agent, Linda, ask me about my experience with Java programming. “Sure,” I say, “I‟ve got plenty”. Then she asks me what I know about hostile applets. “Hostel what?” When she says „hostile‟ I‟m thinking of youth hostels, and „applet?‟ I know she‟s not talking about small apples. “A Java applet a web surfer downloads that is malicious,” she explains. “Oh,” I start to bullshit, “Yeah, I guess I know a little bit about how that might happen. Um…” The lunch is very cordial. At the end, we walk back to the Federal building and they show me around a little inside, all the while telling me about fascinating cases they‟ve been working on. It is great to be with people who see me as more than a patient, at least for an afternoon. I am inspired by the thought of helping my country battle cyber-villains someday soon. “Whee!” I am driving for the first time since Germany. My eyes have recovered enough, and I want to reclaim this important part of my life. Just like my first days learning to drive, I start slow at first, then faster, and finally up to normal speed. I definitely do not want to test myself with driving in the city, but now that we are up in Vermont at our country home, where there is much less traffic, I want to give it a shot. Dad is watching me drive, making sure that I‟m ok. He is sitting in the passenger seat, maybe sweating a little, and quietly (and often not so quietly) coaching me like he did when I was learning how to drive. Mom‟s in the back knitting. Angus is sleeping on the floor. Occasionally, he stirs a little bit, but he never seems concerned. He loves being close to his family. After a while, dad takes a couple of deep breaths and relaxes. I have passed another hurdle, I am driving again. Another part of my life back, another milestone passed on the long road to recovery. Vermont has been a great healer for me. The air and the sky, the quiet countryside, and the isolation have provided a wonderful place to be still and to heal. Mom cooks delicious steaks for me every evening on our 67/9 8

outdoor barbecue, and at night, I play scrabble with my dad, a worthy adversary - After all, he is a professor. My mom sometimes plays with us too. She has an amazing vocabulary, but lacks skill at the game. Her words are always impressive and obscure, but they never score many points. During the day we walk Angus on the river road, and throw sticks in the river for him to fetch - he never tires of it. In all the years we‟ve owned him, he hasn‟t been able to figure out the stick game; he chases down the sticks that we throw, but instead of returning and dropping them, he runs off and tries to play keepaway. When we run out of sticks, he barks and barks, “hey guys! Throw another stick!” I guess he thinks we don‟t understand the game. I go in to work, my first day at Nataki.com, a small startup located on 20 th street between 5th and 6th avenues. I had gotten a job there through an old friend, a high school wrestling coach who had remembered me, found my webpage on the internet, and asked me if I would like to go out for drinks. Over the course of a couple hours and a fair number of drinks, David Rios told me about Nataki, a startup company he and his friend Konata had founded. As he described their work, it became clearer and clearer that is would have been the perfect job for me if I was not otherwise engaged in cancer treatment. Eventually, I asked Dave if he was planning to make me an offer. “I didn‟t know if you wanted to work right now.” He said. “Well, make me an offer, and if it‟s good, I‟ll think about it.” I replied. “How much do you want?” Was his next question. I thought about it. I told myself that I should say something high, just to get the ball rolling in the negotiations. I cleared my throat and boldly suggested that I should be paid $40 dollars per hour. “What? No way, you need WAY more than that. $70 an hour is a minimum; $100 an hour is not unreasonable.”. I was glad I had waited until he was drunk to bring up this topic! “I‟ll take the job.” The deal was that I could work any hours I wanted to work, working on whatever part of the project I wanted, at $80 an hour. A dream job. Emily comes to spend 2 weeks with me before school starts in late September. It is a relief to see her again after so many months, and that despite all the time apart, to find that we still love each other, and that our love is stronger than ever. I tell her that I am still weak, and that we probably won‟t be able to do that much as far as exploring the city. She sighs, “that‟s ok. I don‟t really care about the city. I just want to be with you. Even if we never get out of bed, it will still be a fun, worthwhile trip.” About a week into her trip, we go out to Queens one morning to the US Open Tennis Championships, round 1. We watch Venus and Serena Williams crush their opponents in a short but sweet doubles match. We hold hands, and kiss when we can no longer keep our hands off each other. After the doubles match, we wander around the outer courts, checking out the other matches, basking in the sun, and enjoying each other‟s company. On Emily‟s second to last day with me in New York, Dad buys tickets for a sail around the New York harbor in an old historic iron sailboat. A little before dusk, we set sail towards the Statue of Liberty from the south street seaport. Along for this ride, aside from Emily and I, are my mom, dad, Cyrille and Moreen Finaut (Dutch friends of my dad‟s who have been spending a year in New York) and about 10 other passengers we don‟t know. As we chug our into the harbor, the sun starts to set over the horizon, bathing the entire scene of statue, sailboats, water, and the high-rise city architecture in a beautiful orange-pink light. The atmosphere and the colors are magical. All I can think about as we slowly weave our way around the island of Manhattan is I‟m very glad to be alive, and glad to still be in love with Emily. I return to the hospital to see Dr Fetell. It‟s been another month since my last visit, and thanks to the steroids, I am now a little bit round, especially my face, which is moon shaped. I look weird, and I wonder if it will shrink back to its normal size when I am all done. I console myself knowing that as ridiculous as my physique is now, it was much much worse 2 months ago, after my New York brain surgery. Dr Fetell puts me back on the scale. My weight is now at 168, another 16 pounds this month. I smile; I know it is all fat. I have recovered barely any muscle. I can see the damage all this eating and weight gain has done to me on my hips, which have big stretch marks on them, and in my stomach, which was flat before and now protrudes- Cutely, I like to think. In two months on these steroids, I have gained fifty pounds. Thanks to rest at home and massage, I have more energy and feel much better than the days in the hospital. I don‟t look like I could be snapped in half like a stick anymore. 68/9 8

“It is time,” Dr Fetell tells us, “to start preparing for chemotherapy. You look healthy now, and we need to get started with treatment before the cancer spreads.” We are relieved that treatment – of any kind – is finally about to start. These last two months have been very uncertain. We have been in limbo the whole time, waiting, wondering what treatment I am going to receive, when treatment will begin, and worrying that while we are waiting, the cancer might spread to other parts of my body. The doctors do not seem certain about how I should be treated. The first week or two out of the hospital, Dr Fetell talked to us about just doing radiation alone (no chemo). Then the doctors (Fetell and Bruce) suggested another surgery to remove the piece of tumor that was left. The limited literature on my type of tumor is very uncertain about the best course of treatment. There are some doctors who favor radiation and argue that chemo is not sophisticated enough to be anything more than marginally valuable. Surprisingly, Dr Fetell, who first suggested just radiation, now is on the other side of the argument. He now says he is not committed to radiation afterwards. Fetell now seems to indicate that he thinks I will have chemotherapy and probably no radiation. The doctors also still have not confirmed if I am going to need radiation after the end of chemo, and how much school, if any, I will have to miss while all of this is going on. I would like to get back to school, to my friends and my life as soon as possible. No one has been able to give us a timetable for treatment and when I‟ll be ok‟ed to go back to school. All of our lives are still on hold as we try to figure out what the schedule will be. Finally, all the waiting and worrying and visiting doctors that only goes sideways is over. Dr Fetell assigns me to Dr. Gregory Mears who will supervise my chemotherapy. The anxiety that we feel as the start date approaches is matched by the relief that we are finally going to start killing the cancer, before it can spread throughout my body. This has been worrying my father especially. Now that we have a plan of attack, a great weight has been lifted from him. He is ready to start chemo, ready to be my guide through another hard phase of getting me back to full health. With him as our family leader and motivator, we ready ourselves for the next round. Suddenly, I‟m having terrible headaches again. Terrible, stinging headaches that are tearing my head apart. My eyes are closed, and I refuse to open them. All of my concentration is needed to fight off the headaches. It‟s just like the brain tumor all over again. We call the doctor to ask what‟s wrong. I just had an MRI a week ago, and even though there‟s still some hydrocephalus, Fetell says that‟s always going to be there, and with the ventrisculomy that I had, I shouldn‟t be having a problem. He tells me that on the last MRI, there were no new signs of hydrocephalus, so that can‟t be the reason for the headaches. There must be another problem. “Could it be withdrawal from steroids?” I ask Dr Fetell “Yes… That‟s what it probably is.” Once again, we all let out long sighs of relief. As long as it‟s caused by the steroids, and not the tumor, the headaches are not a problem. As I lie in bed, fighting off the pain, I grow determined to fight as hard as I can, not to let my body wither under chemotherapy or because of cancer. I am going to battle, and slowly I‟ll eliminate the pain from my life. “These headaches are nothing compared to chemotherapy. You‟ve got to get tough. You are about to make another move along the road to recovery.” Chemo is set to start in a few days. Before that time, my dad thinks it would be a good idea for me to bank some more sperm here in New York, in case chemotherapy damages my reproductive system. Unfortunately, time is so tight now that we have to do it only a couple of hours after a visit with Dr Fetell. Even worse, he is going to give me an LP at this visit, a Lumbar Puncture, or to use the vernacular, a spinal tap. At Dr Fetell‟s office I am led into an examination room. At his direction, I take off my shirt so he can see my back. When he leaves the room to do something, I turn around. My eyes are drawn to the tray upon which sits the LP kit. On the front of the kit is a diagram of all the pieces of the needle – spike actually. It is huge. Yikes. Dr Fetell comes back. I tell him “I saw the needle, and I‟m scared out of my mind.” “Why did you look at the needle?” he asks. The procedure is done in 5 minutes. It is painful, but not as bad as I‟d imagined. While it was much worse than a needle in a vein, it does not compare to brain surgery. I‟d never want to have another one, but if I had to, give me 2 minutes to steady myself, and lets go. No big deal.

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We head down to the fertility clinic in a taxi. I feel dizzy from the spinal tap. We travel down Broadway through Harlem to the clinic on the upper east side. My back is killing me. I can‟t believe they expect me to go do this now. Haven‟t I been through enough for today? Don‟t I have a say in all this? It‟s my sperm after all. We arrive at the clinic and fill out paper work. A male nurse/technician leads me to my room. Before he shuts the door behind me, he hands me a little plastic cup, and gives me a look, like “you‟re cool, right? You know what you need to do, right?” I sort of nod thanks, and he leaves. The room is porno paradise. Along one side of the wall is a long bookshelf, perhaps 12 feet long, piled up with issues of every pornographic magazine I‟ve ever heard of (and I lot I haven‟t!) There is a TV, a VCR, a pornographic tape, and a comfy chair set up. The temperature is just right to get you in the mood. Still, I‟m not sure I can do it. I‟m very worried about aggravating my back, and do not want to move at all. I worry that any slight movement, particularly curving my back and putting pressure on my vertebrae, will result in incredible pain. I do my business quickly, using one of the magazines as an aid. I make myself decent, exit the room, and hand the cup to the waiting attendant. I go out to the lobby, collect my parents, and leave the clinic.

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Chapter 15: Chemotherapy Cocktails
Chemotherapy is the use of powerful chemicals and/or drugs to kill cancer cells. Most of these drugs must be administered intravenously, although some, most notably Tomoxifin for breast cancer, can be taken orally. Chemotherapeutic drugs work by poisoning all cells they can penetrate. Some of these cells are killed, others are able to survive, but unable to spread or grow. The trick is to come up with drugs potent enough to destroy cancer cells without killing non-cancerous cells, or causing the heart, kidneys, and other vital organs to shit down from toxic shock. The development of different kinds of chemotherapies has been slow and often haphazard, discoveries made by accident rather than research totally directed in the direction of fighting cancer. Also, different kinds of cancer respond to different chemotherapies, so the battle to find effective drugs is a slow one, and every step we take is just a small step, a tiny piece in the search for a total solution. For this reason, chemotherapy has long been a secondary treatment, a setup for radiation, which is the big weapon against cancer. (although recent advances are bringing chemotherapy treatment success rates to the level of radiation and beyond). There seems to be a major breakthrough in chemotherapy every ten years or so. In the 60‟s, prednisone and vincristine were found to largely cure childhood leukemia. In the 70‟s, Nitrogen mustard and procarbazine were found effective for Hodgkin‟s disease, and in the 1980‟s, Adriamycin was discovered and used against certain kinds of lymphoma. many of these breakthroughs have occurred by accident. 1 The main ingredient in my chemotherapy cocktail (cisplatin) is from a category of drugs that was first discovered during a completely unrelated science experiment. Scientists were running an electrical current through a petri dish of bacteria, and found that the ones at the nodes they were using were not multiplying correctly. Upon further discovery, they found that the platinum in the nodes had poisoned them, preventing them from mitosis (reproduction). This discovery lead to years of research, and the creation of carbon platinum and cisplatin (also called cisplatinum), the drug that saved my and cyclist Lance Armstrong‟s lives. However platinum has been ineffective against other kinds of cancer so far. No one yet can predict which types of cancers will be affected by new drugs, and although more research is being done all the time on the specific structure and properties of cancer cells, finding a drug that can take advantage of their weaknesses is slow, hard, and haphazard work. Despite this, new developments in drugs may be just on the doorstep. The holy grail of chemotherapy is a drug that can target cancer cells more specifically, killing more of the bad guys and avoiding causing collateral damage. A drug like this may soon overtake radiation as the best method for treating certain types of cancer. In terms of side-effects (nausea, pain, loss of energy/appetite,) ease of administering the treatment, and success rate, chemo is rapidly closing the gap. The newest drug out there, [R571], a new drug being used to treat [pancreatic?] cancer, is being hailed another revolution in chemotherapy. This new drug is even more specific in the cells it targets, and more potent against the cancer. Eventually, Chemotherapy will surpass radiation. Scientists will be able to tinker and create new drugs, always targeting cancer more specifically until there are almost no side-effects and the drugs are able to very effectively eliminate all cancer. Another dream I have, although not yet ready for the mainstream, is that advances in computer science and robotics could someday lead to a universal cure for cancer. This dream is a long way off, but some day in the future it is possible that tiny nanobots could be injected into the blood stream. Programmed to seek out and kill only cancer cells, they could be much more sophisticated in what cells they kill, and in there effectiveness at killing all bad cells. [in the sixties, it was --- in the seventies, ----, in the eighties, ----. Now, platinum drugs.] [talk more about how doctors have found different kinds of chemos which effect different kinds of cancer. Mixtures sometimes work.] Platinum is very toxic, and if the dose of any drug involving platinum is too high, the patient risks damage (bone marrow, hormones, kidneys, urinary tract) or even death from the toxicity. The patient‟s kidney and urinary system must be healthy and strong enough to process these powerful drugs. In fact, a patient has to pass a kidney function test before being cleared for cisplatinum as an outpatient. If my kidneys had not been healthy, I would have been kept in the hospital for one week out of every three while receiving cisplatinum, with electronic monitors to make sure that my kidneys didn‟t fail and that I didn‟t go into toxic shock. I‟ve never thought about what damage the chemo might have done to my kidneys, my doctors never mentioned it, but my peeing, the best indicator of kidney function, seems fine. I could have my chemo as an outpatient.
1

This was mostly taken or paraphrased from the NYTimes, July 29, 1999 in an article called “One miracle, but can we hope for more?” 71/9 8

Almost any current chemotherapy will probably have an effect on the immune system. Part of chemotherapy‟s selectivity is that it affects fast growing cells, including stem cells in bones that make blood cells, platelets, and other fast growing cells, explaining why patients lose their hair and often their sperm production. While a person‟s red blood cell count will probably suffer from chemotherapy, it is the white blood cell count that really concerns the doctors. If the white blood cell count drops too low, and one‟s immune system starts to shut down (like what happens with AIDS) the body becomes susceptible to opportunistic infections and diseases – tuberculosis, pneumonia, influenza, and certain kinds of lesions and sores that can kill the defenseless patient. If the white blood cell count drops into the danger zone, the doctors may have to suspend treatment, possibly diminishing its effectiveness. Luckily, there are drug to counter the negative affects of the chemo cocktail on blood cell counts. The white blood cell drug, which I received, is called Neupogen. Neupogen contains a human growth hormone that causes bone marrow to go into super production of white blood cells. Chemo may kill some of these new white blood cells, but the incredible Neupogen induced production makes up for the loss. I had to inject (actually, dad did the injecting) Neupogen for the first ten days in each chemo cycle. The normal white cell count is 2.8 to 8. The first week of my chemotherapy, my white count was already abnormally low, 2.6. By the time I finished chemotherapy, my white count had risen to 17. The other chemotherapy drug in my cocktail is Etopiside, or VP-16, as it is popularly called. Etopiside is an antibiotic anticancer drug that is helpful in fighting a broad range of cancers, including lymphomas, acute non-lymphocytic leukemia, hepatoma, rhabdomyosarcoma, Kaposi‟s sarcoma, and cancers of the testes, lung, prostate and uterus. VP-16 is an antibiotic-type drug that fights cancer directly – it kills all cells it finds. The combination of Cisplatinum and VP-16 pounds Germanoma with a one/two punch. The VP-16 kills the cancer cells at the same time as the Cisplatinum prevents cancer cells from reproducing. This combination of drugs is extremely toxic, even to the patient. However, for the cancer, it is a total onslaught. The best way to administer any drug is intravenously. This way they are not diluted or broken down at all by the digestive system. The mouth is a terrible way to get medicine into the body; When you swallow an aspirin, Tylenol or Advil, only 10% of the dose even makes it into the blood stream. Suppositories are much better, but even then, only about 50% of the drug gets into the blood. Some drugs, like Neupogen, can be injected subcutaneously into any muscle or fatty tissue area. It doesn‟t require much, if any, training to do this. The tradeoff with a subcutaneous injection is between the ease and the simplicity of this type of injection, versus the higher levels of effectiveness with an intravenous injection. There are two ways to give drugs intravenously. The first - what I will have, is a syringe left in a vein for up to three days. The advantage of this is it is easy to set up the IV (syringe) on a patient, and it is easy to remove it. Blood can flow both ways through the IV, allowing nurses to take blood for testing and use the same apparatus to put chemicals into the blood. To use an IV, you need a good strong vein in an easily accessible location. The hands and arms are good locations. Anywhere else is probably going to be uncomfortable for the patient to try to move about freely with. Once a vein has had an IV in it for an extended period of time, it normally deflates as the blood finds ways around it; then that spot on the vein cannot be used for IV implantation. The second way to deliver drugs intravenously is through a „portal‟. A portal is a solid plastic structure implanted in the body and connected to a major vein, potentially anywhere on the body, but often in the chest. The body heals better around a portal, which is more sterile than the syringe. The vein remains healthy and uncollapsed. Once a portal is implanted, the patient can get all his/her chemo through it. It never needs to be replaced, and it rarely blocks up. The disadvantages are that it is more invasive, and can never be removed. Implantation of a device can be painful and it can get infected. Because of its critical importance, the central nervous system (brain and spine) has its own vascular system for providing nutrients and removing waste. The advantage of this system is that most diseases that enter the blood system never spread to the ceribral-spinal fluid and don‟t affect the brain or spine. When disease does penetrates the CSF system and infects the brain or spine (ie meningitis) the condition is always serious because neither the immune system nor conventional drugs are effective in these zones. Chemo patients often suffer from a lack of vitamins and minerals. Chemo makes vitamins and minerals harder to absorb and retain in a number of ways. First and most importantly, the chemo can damage cells that line the stomach, causing nausea and reducing the efficiency with which vitamins are absorbed. Second, because of the toxicity in the blood, the patient who is drinking fluids to keep the kidneys clear of chemotherapy can dilute mineral levels. Third, just the presence of the chemo reduces cells‟ abilities to regulate vitamin and

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mineral levels. The body is too busy trying to cope with the chemo and getting it out of the system to worry about vitamins. At the start of every chemo week, they test my white and red blood cell levels, and my vitamin and mineral levels. If there is a problem, they can add more drugs to the cocktail flowing through the IV.

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Chapter 16: Going through chemotherapy
7:00 AM Dad is talking and lightly pulling me out of bed. Although groggy, I do not resist his remonstrations. I know what I must do; I am excited about getting healthy. It is chemotherapy time. Dad leaves and I dress. I change shirt and underwear, then put on my lucky green shorts which I wear every day to the hospital. They are incredibly comfortable, and also easier to put on and take off, which I will need to do at least a couple times when I get to the hospital. Taking off my pants/shorts is not a necessary part of the treatment, but it does make the peeing process easier. Anyway, it‟s so hot outside in mid July that shorts are sartorially appropriate. 7:13 AM I try to eat a healthy breakfast. This is easier at the beginning of the chemo week, when I‟m rested, and my body isn‟t so worn down, enervated, and nauseated by the chemotherapy. Even before cancer, when I was totally healthy, I never ate a big breakfast, so a satisfactory breakfast that fills me up is normally a half bowl of cereal or a bowl of fruit salad, and a glass of orange juice to wash it down. I do not shower - I have an IV in the back of my hand. I could shower if I covered the IV with a plastic bag, but it‟s too much hassle. I‟ll wait till Wednesday when they remove the IV, tomorrow afternoon. 3 days is the maximum length an IV can stay useful and uninfected and unclogged for in a human being‟s vein. Any longer than that can cause and the vein might collapse and clog as the body tries to expel the unwanted needle. The risk of infection also increases every day, and the best way to prevent any infection from starting to develop into a serious problem is to change the IV port frequently and sterilize the area afterwards. So for three days I‟ll just use anti-perspirant and take a shower when I‟m not in danger of ripping my vein apart. The last thing troubling me now is a little body odor. “Okay, I‟m coming!” Dad is poised by the door with a canvas shopping bag on his shoulder. Inside the bag are various odds and ends that we will use while I‟m getting treated – books, law papers and articles (for dad), and books on tape for me. He wants me to use this time during chemotherapy to “increase my intellectual capital” We‟ve also got bagels, mom‟s fruit salad mixes, and other assorted snacks to fuel us through the day. I stuff the last bit of fruit salad into my mouth, chug the orange juice, and head out the door. 7:32 AM We head out of the house, around the corner, and back to the west 4th street subway station, our gateway to the hospital. In a few minutes we‟re on the A train heading uptown. We sit back patiently on the benches and relax; this trip is part of our routine now, like commuting to work. I read every station sign over and over, and check my watch to make sure we‟re on time. I am anxious to get to the hospital and get things going. The soon we get there, the sooner we‟ll be done. I had anticipated chemotherapy being a nightmare. Strangely, I kind of enjoy it. I haven‟t suffered from any really bad side effects – no pain and very little nausea, and I like the battle against the cancer. I love thinking every day that I am getting closer to being cancer-free, back to health, and beating cancer. I like getting hooked up to the IV pump, watching the bags drain and eventually shrivel up, their purpose nearing fulfillment, then finally run out completely, their healing infused into me. Each day, the cancer is getting barraged by chemotherapy artillery, and I am winning the war. 8:20 AM We are standing in front of a food cart on 168 th street, buying a coffee for my dad and a bagel and a juice for me. This too is part of our ritual. This stand provides us with sustenance to get through the day. Dad always offers to by my whatever I want, anything I think will help me good during these tough weeks. He is very concerned that this period going through chemo be as positive as possible, and offers me a whole smorgasbord of foods, books, and snacks. It is as if a part of his visual cortex has been taken over by paternal instincts, and everything he sees is examined with a special camera, with the question – “Can this help Tom?”. For the morning, though, a bagel and a juice is all I want. We head down the street to the hospital, the brown paper bag tucked into our bag from home along with all the other stuff.

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8:31 AM The chemo unit is on the 8th floor of the Atchley Pavilion. It‟s very cheerful and bright, and has a magnificent view of the Hudson. We greet all of the nurses, they all smile and nod back. The unit is quiet and very comfortable. There are no doctors around, just nurses and patients. Surprisingly, it is a very relaxing place to spend the morning. The chemotherapy I am receiving is very, very powerful, even when compared to other types of chemotherapy. If it were allowed to stay in my system, it could rapidly result in the shutdown of my kidneys or anemia that could hurt or even kill me. Cisplatinum must be removed from the system to prevent this almost as quickly as it is administered. As part of chemotherapy every day, the nurses require me to pee at least 1000 cc‟s before leaving, which means drinking A LOT of anything and everything - mainly the cans of juice they have available. Also, there is a neutral, “flushing” fluid solution that is hooked up through the same IV as the chemo. Because of the copious amount of peeing required, I am given a private room, with a bed, TV, curtain, and bathroom, and of course the stand which holds the fluid intake regulator and the bags of chemotherapy. Patients receiving less toxic cocktails sit in big, soft, easy chairs in one of two large common rooms at the end of the hall. Each common room accommodates perhaps a dozen such sedentary patients. Outside of the common rooms are about a dozen private rooms, and I am always assigned to one of these. While most of the patients in the common room stay about two hours and usually do not have to come every day, my chemotherapy takes about 5 or 6 hours a day, everyday for 5 days (not the weekends). Most significantly, they did not have to have their output measured. I jokingly think to myself that those people in the common room, who only came in for one day every 2 weeks, might be doing “unintensive chemotherapy”, a contradiction in terms if I ever heard one. We get our room assignment, a north room. Today we are unlucky, the river view will be mostly obscured. Still, all of the rooms are cozy and comfortable, and they all have nice views. Besides, sightseeing is not what has brought me here. I take off my shorts and get into bed. Dad goes to fetch some juices, which I‟m going to need to start drinking to get peeing right away. In the common room at the end of the hall, a number of patients are getting settled in for their day‟s regime. Surprisingly, In all my days of chemotherapy, I will never spot another person who‟s lost his/her hair. The only way I have of explaining this is that some of them, at least, must be wearing wigs. 8:35 AM My nurse, Susan, comes in with the water solution bag and hangs it from the stand next to my bed, on which the fluid pump is also attached. She unwraps my bandaged IV, which was dressed the day before to prevent it from getting hit, jostled, or ripped out between sessions. She checks out the skin around it to make sure that it is still functioning okay, and that it is not irritating the area. To my eye, Susan is in her late 30s, attractive with a wonderfully upbeat and warm personality. She treats me as though she really likes and cares about me, and we share a conversation or two everyday about the world, her two daughters, the hospital, or just something that‟s on our minds; there is a strong bond between us. On the subject of nurses, I am lucky that they‟re still at work; two weeks before I was to start my therapy, the nurses called off their plans to go on strike. The first two rounds of chemo, I had IVs in what might be considered normal places in the arms for giving blood or finding veins. Now, having exhausted both forearms, Susan has implanted the latest IV into a vein on the back of my left hand. It made me feel like Wolverine of the X-Men (Wolverine has retractable claws that come out of the top of his hands. When retracted, the claws leave little holes which look like the IV with multiple in/out ports I‟ve got attached) Before I get any chemotherapy, Susan must test my blood cell levels to make sure that my red and white cells are holding up. She takes the protective top off the IV off and attaches a tube leading to a docking bay for test tubes. As a new test tube is inserted, blood starts to flow from me through the apparatus. She fills each of the two test tubes three quarters full, and disconnects the system from the IV, and attaches the water drip line in its place. Finally, she cleans up any blood that might spill in the exchange. The blood-taking is completely painless, since it is all done through the IV that is already in my hand. She connects the water line to the pump, since without the pump the flow of fluids into my body is rather slow and uneven. The water starts pumping into me, hydrating me while my blood is being tested. While she is doing all of this, we chat about life and chemo. I tell her that I‟m getting by, and that I love coming to chemo. She tells me that I‟m a great patient, and that it‟s great that I never complain. She always says how well I‟m doing. It makes me proud of myself. I tell her that she‟s doing a great job. I tell her about Emily. Dad jokes that Emily‟s ok, but he‟s got a better girl picked out for me. Susan laughs – the atmosphere feels more like a playground than a hospital. Despite the terrible seriousness of the situation, we are all loving life. 75/9 8

8:45 AM Dad begins pressuring me to drink the first can of juice. The juice cans are those little six ounce cans that they serve in the cafeteria and for snack time when you‟re in 1 st grade. He commands me (in a humorous way) to drink it up quickly and keep pounding the fluids. I tell him I‟m not thirsty, and I think it‟s going to make me throw up. He tells me he doesn‟t care what I “feel” like doing. This is my work! Begrudgingly, I start to down the first juice. The battle over my fluid intake continues all day. Dad and I kind of enjoy it. While I continue to wail at the excessive amount of liquid already in my system, insisting all the time that I cannot drink another drop, dad alternately orders, forces, demands, coerces, and sometimes bribes me to keep going. Our banter over drinking and peeing reinforces our closeness. He just inspires me (well, bugs me) into drinking when I don‟t think I can drink any more juice. 9:25 AM My first pee. Dad hands me the flask which I position under the bed covers to catch my output. I can‟t just get up and go to the toilet for two reasons. One is that we have to have an accurate count of how much I am peeing. The second is that I am attached by the IV to the pump, which is plugged into the wall. The pump can still run when it is unplugged, but it is a big hassle, and since I‟m peeing so much, it makes more sense just to do it lying down. I hand the flask to dad about a quarter full, and he sets it on a flat surface to measure how much exactly is in there. “Um…” he says, looking at it, trying to get an accurate read, “it looks like about … I‟ll give you 200 on this pee. Pathetic! You‟re holding back,” he says accusatorily. I know he‟s not serious, he‟s just being a joker. That‟s our game together. 10:00 AM Susan comes back, bringing the first bag of chemotherapy: It has my name on it. There shouldn‟t be any mix-ups, no possibility for a patient to get the wrong bag of chemo. But what if it happened? That‟s a thought too scary to contemplate. She says that some of my vitamins are a little low, so I‟ll get a vitamin boost mixed in with the anti-nausea drug. A vitamin boost? What is this, a smoothie? My white blood cell count looks good, up to 14. I smile as she tells me this, thinking of the charade we go through before dad injects me with Neupogen, the drug that boosts white blood cell production. … “Alright Tom. You‟ve had enough time to prepare yourself. It‟s got to be now.” “No! I‟m not ready!” “I don‟t care if you‟re ready, I‟m ready. Get your butt in here. Take down your pants and show me your thigh.” “Not yet. Please, I‟m scared.” “Scared?! This is a tiny little prick in your leg. It takes one second. What‟s there to be scared about? You‟ve survived an eight hour brain surgery.” … This was the scene every night at home. My dad chasing me around the house with the syringe and the little vial of Neupogen, me fleeing, trying to buy time before being “inoculated”, as dad puts it. It is a completely irrational fear, and dad thinks I am kidding around. Yet with each injection, I am so nervous I can‟t watch. I need to look away as he sticks me, pushing down on the plunger, and withdrawing the needle. The whole thing lasts no more than five seconds. Dad is great at doing it as quickly, painlessly, and merrily as possible. I wouldn‟t want anyone else “inoculating” me. I have always been afraid of shots and needles, and when I first heard that I would have to have injections on my off-weeks to keep my white blood cell count up, I asked dad if it would be alright. “Do you think you‟ll be able to find a vein and do this without injuring me?” Dad laughed. “Tom, this is not a shot that goes into a vein. Do you think that they would just tell me, „here. Take some syringes, find a vein, avoid the arteries. Good luck.‟ He cracked up. I later learned that the Neupogen injections are in the fatty part of the thigh, into the quadriceps muscle. Not a vein anywhere nearby. … “Alright. Here is the VP-16.” 76/9 8

The fluid bag is now about ¼ empty. Susan smiles as she shows me the bag of VP-16 and attaches it to the second port on the IV. Now I‟ll get chemo and water at the same time. She opens the fluid pump and replaces the water bag‟s line with the chemo bag‟s. She shuts the pump again, and slows down the pump‟s speed so that the chemotherapy is not pumped into me too quickly. She asks how I‟m doing. “Great,” I say, “Come on cancer, let‟s get it on.” Dad butts in and points out that my urination has been unimpressive, and I shoot him a look. 10:40 AM My first major pee of the day. “350” my dad says triumphantly. I can see that he‟s proud of me, and proud of himself for pumping me so full of fluid. I‟ve had four of those six ounce cans so far, and I am exhausted from drinking. I tell dad that I‟m going to go to sleep after this pee. He tells me that‟s alright. The first bag of chemo is half done. I‟m a quarter of the way done with today. 11:00 AM Another pee. Dad measures. “I‟ll give you… 250 on this one and that‟s stretching. Pathetic! Come on Tom, let‟s see some production!” He starts plying me with yet another can of juice. I refuse, but he starts pouring it into my mouth. I turn away, and the juice spills on to my face and clothes. Dad is laughing, then I start laughing. I take the can, drink about half, and return it to him, still laughing at our foolishness. This is really comic. The VP-16 is almost finished, and the bag that contained it is starting to shrivel as the pump sucks everything out of it and into my body. 11:13 AM Beep! Beep! Beep! Beep! Beep! The pump is beeping because fluid is no longer flowing through the line - The VP-16 is finished. Susan comes in and turns off the pump. She opens the pump‟s door, takes out the chemo line, and replaces it with the water line. She shuts the door on the pump, and increases the rate of flow; the water can be pumped quickly. She picks up the now empty bag of chemotherapy and takes it with her out of the room. During my first week of chemotherapy, I worried that the chemo might run out and air would be pumped into me, causing a brain or heart embolism. Susan assured me that it cannot happen. 11:45 AM Susan comes back to the room with my anti-nausea cocktail. She carries a small, round, graduated cylinder containing a solution of vitamins and the anti-nausea drug. She attaches it to the stand, and takes out two syringes. She sticks them into the top of the graduated cylinder and injects the contents of each one into the anti-nausea solution. Today, she has an extra, third syringe, which she says is some extra Vitamin B because I am a little low; she shoots that in as well. She attaches the cocktail to me, but does not feed it through the pump. She asks us how I‟m doing with my “output”. “800, all together” my dad says. She is satisfied, and leaves the bag to drip slowly. I groan as the anti-nausea drug starts to enter my system and ask for my bagel. Dad hands it to me and I start munching slowly, hoping to settle my stomach. Nervously, I watch the anti-nausea drugs dripping into me, all the while feeling more and more nauseous. It is ironic that the anti-nausea drug make me most nauseous, positively sick to my stomach. The Cisplatinum doesn‟t affect me much. Dr Mears says that I am tolerating chemo remarkably well. The anti-nausea cocktail is finished, and I continue to hydrate. I finish my bagel and open another can of juice. This is when the chemo gets serious. 12:15 PM Susan comes back with the Cisplatinum. She hangs it where the VP-16 was, and hooks it up to me in the same way. The main round begins. Each bag of chemotherapy has a yellow label on it. It reads, “caution. Bag contains harmful blah blah. May cause cancer. Handle with latex gloves.” There is a great irony in this too. Anyone else here must handle the latex bag with latex gloves to prevent any exposure at all. Meanwhile, it‟s being pumped into me by the bagful every day. I can‟t believe I‟m not feeling sicker! One day, my dad‟s friend and companion in Germany, Jeff Lauren, substituted for dad. Jeff is a very energetic and curious guy, never sitting still. At some point during the session, he starts playing around with the 77/9 8

bags of chemo. “Jeff,” I told him, “read the warning label.” He flipped the bag around, read the message about handling with latex gloves, ran into the bathroom, and started washing his hands furiously. I just laughed. “Jeff, if they can pump me full of that, you can survive touching the bag. I think it‟s more a warning for the nurses, who have to handle it every day.” His anxiety was only slightly relieved. 12:30 PM The reflexologist has arrived and dad leaves for a walk and some lunch. She asks how I am, if I have any special pains, and then sits herself in a chair at the end of the bed and begins massaging my feet and hands. Reflexology is an eastern massage technique, using pathways through the feet to work out toxins in the body. It helps me with the slight nausea I sometimes have, and helps my body recover more quickly from the chemotherapy. At first, I was quite skeptical of the benefits that could be obtained just by massaging feet, but now I‟m a believer. As she works on my feet today, I feel the effects of her touch all over my body – In my back, in my stomach, in my legs, in my head. I don‟t know how, but it really does work, and even if it doesn‟t, it feels great and diverts me from chemotherapy. It lasts an hour every day. It goes on while the chemo is still circulating through my body. The room is quiet so I can concentrate on the massage, on relaxing my stomach and freeing my mind. When she leaves, I will look forward to more “treatment” tomorrow. I owe my dad for setting this up for me. When he heard that I would have to go through chemo, he wanted to do everything possible to make it tolerable. He is a great believer in the benefits of massage. When we first had our orientation tour of the chemo ward, he asked about complimentary medicine. They put him in touch with the complimentary medicine department, and we arranged for reflexology every day that I got chemo. During the entire time I was undergoing chemotherapy, I had practically no nausea. During my first cycle of chemo, I had a little bit of nausea by Thursday and Friday, the 4 th and 5th days. But I never vomited, and I never felt that bad. Aside from that first cycle of chemo, I had no nausea whatsoever. Maybe I tolerated chemo might so well because I am young and strong, or at least I was. But I believe that the massage and reflexology were crucial. I don‟t know what chemo would have been like without them, but with them, I sailed through. 1:30 PM My reflexology time is up. She tells me she hopes she did a good job and helped me. I tell her that she has and that I love reflexology. She is very pleased. Chemotherapy is almost over. The mighty bag of Cisplatinum is just about empty, and I watch it shrivel up like a raisin, as the last of the toxic chemicals drain from the bag and into my body. Yum. I feel good. I‟ve slept a lot during the morning, and I don‟t feel nauseated. I am impatient now to finish up. Dad and I turn on the TV and catch up with the stock market. Neither of our minds is on the stock market, nor do we care how are stocks are doing. Sitting in a hospital room, watching how well I‟m tolerating chemotherapy is all my dad cares about. I am now well along the road to full recovery. 1:40 PM The IV pump starts beeping again. Done with Cisplatinum. Susan comes back, turns off the pump, unhooks my IV, and takes the bag away to dispose of it. I am left on the water solution. When Susan comes back, we beg for parole release. She laughs and ask about my “output.” “1450” my dad says, in a proud voice. Is he proud of me or of himself? She says that‟s fine, and that I can go. She stops the pump, unhooks the IV, puts the stopper back on it, wraps my hand in a gauze bandage. “See you tomorrow!” We‟re free. 2:30 PM We are back in Greenwich Village at Marumi‟s, our favorite sushi restaurant, 5 blocks away from home. Another day done with chemo. Another day closer to claiming my life back. Our lunch is served. A mixture of pieces- tuna, white tuna, sea eel (my favorite!), salmon, yellowtail, and, of course, good old California rolls- adorns our table. I am now eating raw fish, happy as a pig in shit. I want to go slow, but it is too good, and soon everything has disappeared. “Dad, Can we do sushi every lunch?” I ask. “Whenever you want.” 78/9 8

This sounds generous, but dad also LOVES sushi. 4:00 PM I‟m hard at work on my website, www.stanford.edu/~tjacobs/ I‟m summarizing how my treatment is going, and how good I‟m feeling. I‟m writing about going to sushi for lunch today, and chuckling to myself as I do it. Imagine! I‟m going through chemotherapy, and my stomach is settled enough so that I have app etite and can eat sushi right afterwards! Chemo is going so well for me that I‟m a little worried about whether they are giving me the right stuff. Or maybe they‟re not giving me enough. But I know that‟s crazy. I can count on Dr Mears and Susan too. The chemo must be working. [quote webpage] I finish up my website entry for today and upload it to the web. When that‟s complete, I go to my room to watch TV and nap. I came up with the website idea a couple weeks ago, after completing my first 3 week chemo cycle. Now with the effects of chemotherapy on my red blood cells, and the anemia and lack of energy it produced, it was getting harder and harder to deal with the many phone calls from friends and relatives, asking how I am doing, asking me to tell the same story over and over again. Why not recount my treatment on a website? That way, people could read about it every day, wouldn‟t have to call to see if something was going on, and could stay informed without worrying about bugging me. I could get the whole story across accurately and in full without having to repeat it a million times. Dad was initially very skeptical about the webpage. “Do you really want to put out personal information like that for anyone to read?” It doesn‟t take more than a week for him to admit that the webpage is a terrific idea. Friends are checking up regularly on my condition, and sending me encouragement by email every day. I am getting emails from friends all over the world – England, Australia, Germany, South Africa, and even a few people I don‟t know are following my progress. [quotes from some emails] People I hadn‟t heard from in years suddenly were writing email to me. One of those was an old girlfriend, Victoria Porto, who had been in my sophomore German class at Stanford. I had wanted to get in touch with Victoria because I needed help remembering the name of our German instructor, Michael something, in order to get a recommendation for a job at a German language camp. But since I couldn‟t remember Victoria‟s last name either, I was stymied. One day an email from Victoria Porto appears. She tells me she‟s just sat down at a computer, and started to type in www.stanford… and, as Netscape will do, it has auto-completed the address to my homepage. Apparently, someone else must have been reading my webpage at that computer in the library, and now the program thinks this must be what she‟s looking for. She goes to the page, reads about my cancer, and writes to me, expressing surprise and concern. All when I was trying to figure out how to get in touch with her! 6:30 PM Dinner time. Mom is an excellent cook. Even though I‟ve had chemotherapy today, followed by raw fish for lunch, I am once again quite hungry. But the evenings when I haven‟t been very hungry, I try to eat to keep my weight up. If I‟m fat now, fine. I‟ll deal with that later. Mom is an excellent cook. Tonight, she prepares liver. That‟s not my favorite, but she wants to pump me full of iron to offset my anemia. The doctors have told us that this does absolutely nothing, that the problem isn‟t lack of iron in my blood, but that the cells responsible for making new red blood cells are under attack every day, and so there are less cells able to carry energy and nutrients around. There is a drug to combat this kind of anemia but I am not on it, because it isn‟t very reliable, and a little anemia isn‟t going to kill me. I also have low platelets, which means my blood is very thin and does not clot quickly. This is something of a concern too. I should try extra hard not to cut and bruise myself. 7:30 PM I sit with my friend Colby McGavin, who is home from Stanford for the summer. We‟re at the Lucille Lortell playhouse in the West Village. The play is “Y2K”. My parents saw it a month ago and loved it, so dad bought two tickets for me on the spot. The play is a weird combination of science fiction and film noir. It is about identity theft, the internet, and how the future is going to change the way we define our identity.

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Dad is doing everything he can to make my life fun and interesting during this period. In fact, he is wearing me out! All I want to do is watch TV and sleep, but oh no, that‟s not good enough. He wants me active and engaged at all times. These activities include plays, comedy club, flamenco and modern dance, the New York City Film Festival, and Yankee games up in the Bronx. In fact, I rarely have a night off, and when I do, I am happy to have it. All of these activities would be draining under the best circumstances, and when I‟m trying to go through chemo, getting up at 7 o‟clock every morning, it is truly exhausting. It is too much, in fact, and I‟ve had to skip some things when I just could not stay awake and energetic any longer. 9:30 PM The play is over. It was interesting and entertaining, but I thought not all of the characters were convincing, and the acting was a little strange. I would not have said great, but it was definitely worth seeing. Colby tells me that I look great, well considering what I‟m going through, and it makes me feel good. I know I‟m doing fantastically well with all of this. In fact, these last couple of weeks have been some of the happiest of my life. I‟m with my dad every day, riding the subway, getting back to health. We‟re eating sushi for lunch. I‟m going out to shows. There is nothing going on that bothers or upsets me other than my brain tumor, and everyday, I am doing something about it. In spite of being in treatment for a very serious condition, in the most tense and crucial period of my life (so far,) I‟m having a great time, and I don‟t have to go to anything I don‟t want to. In spite of chemotherapy, I‟m actually having a great summer! 10:00 PM The play has totally whipped me out, and I am ready for bed. I watch the Yankee game on TV with dad, and we both chat about their chances this year. He asks me about Colby and about the play, but I am already gone. My eyes are only half open and I have no idea what I‟m saying. We get to the seventh inning, and the game is a good one, but I just can‟t keep my eyes open any longer. I ask dad to leave, cuddle up in bed, and go to sleep. I dream of Emily, whispering in my ear, telling me she loves me and misses me. I squeeze my pillow harder and continue sleeping. 11:39 PM I cannot sleep. Somehow, my pillow is unbelievably itchy. Every time I start to fall asleep, my nose or neck have an irresistible itch. I too tired so I try to ignore it and go back to sleep, but I can‟t. Eventually, I wearily open my eyes to try to find out what the matter is. My pillow is covered with hair. My hair. I had just about convinced myself that I wouldn‟t lose my hair although Dr Mears and Susan assured me that I would. I comb my hand through my hair. A chunk of curly locks comes out. Oh. Not such a big deal really. I knew I was going to lose my hair anyway. I just don‟t know if I can sleep like this. I get up to tell my parents what has happened. They commiserate with me and suggest having my shaved in the morning. It would be too depressing – not to mention uncomfortable – to have it fall out in drips and drabs. I return to bed, lie down, and try to sleep; it is no use. I am exhausted by the previous day of chemotherapy, and now I‟ll have to get through another one on no sleep. I guess I‟ll just sleep in my room today. As the hours pass slowly, I think about my last sleepless night, the night before brain surgery in Germany, and smile. At least I don‟t have to worry about not making it through tomorrow. As much as this hair loss is a nuisance, I am happy to be alive, and happy to have such a great family to take me through this every step of the way. I lie half awake, half asleep, thinking about how truly blessed I am.

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Chapter 17: Radio-Therapy
We all know that exposure to too much radiation causes cancer. We know that citizens of Hiroshima exposed to Atomic bombs in the 1940s suffered cancers for decades afterwards. We also know that laboratory scientists working with radioactive materials and workers in nuclear power plants have to be ultra-careful to avoid any exposure to radiation and radioactive materials. So how is it that patients with cancer can be effectively treated by controlled exposure to radiation? This is a complicated question. In order to begin to answer it we must digress into what the word „radiation‟ means, since it is thrown around a lot and often misused. The definition of radiation, according to the dictionary, is “the process in which energy in the form of rays of light, heat, etc. is sent out through space from atoms and molecules as they undergo internal change.” There are all kinds of radiation waves, from low frequency radio and heat waves to visible light to high frequency x and gamma rays („waves‟ and „rays‟ are interchangeable terms in this context). The different waves can be exploited for different effects. The MRI The „MRI‟ (Magnetic Resonance Imaging) is a three dimensional scanner that, while not directly related to radiation therapy, has some similarities in its operational mechanics to the way radiation therapy works. However the MRI process has no lasting effects on the body or the cancer within. It uses powerful electromagnets to magnetize the patient‟s body, and reads and interpolates the way the molecules in the patient‟s cells react. All atoms are made up of a positive core nucleus of protons and neutrons, and negatively charged electrons that are much, much lighter than either the proton or the neutron, and which spin around the nucleus, held in place mainly by magnetic forces drawing them in, and the centrifugal force caused by the electron‟s great velocity (if their were no magnetic forces, the electron would continue in a linear direction, and quickly fly away from the atom, whichever direction it went) Also, the electrons have fields, called „shells‟ around the atom, determined by the number of electrons already in place. An atom of oxygen, which has 8 protons and 8 neutrons, would have 2 electrons in its 1S shell, 2 more in a 2S shell, and 4 in a 2D shell. Because of magnetic repulsion among the electrons, there can be only 2 electrons in an S shell, and 6 in a D shell, and atoms with less than the maximum number try to fill the openings (called „unpaired electrons‟) by bonding with other atoms to make molecules. Therefore, Oxygen can bond easily with itself (2 Os -> O2 or O + 2H = H2O = water) When the body, made up of molecules composed of atoms, is placed in a powerful magnetic field, each electron is pulled slightly away from its orbital by the magnetic attraction of the machine. The further these electrons get from the nucleus, the more potential energy they have (it has taken more magnetic force to get them further away). When the magnets are turned off, the electrons fall back into place, losing their extra energy and releasing radiation waves. The electrons of different types of atoms and molecules are affected differently by this magnetism, and consequently release different types of waves. Some may release radio waves, others visual light, and so forth. The MRI reads these released waves, converting them into a 3D picture. Radiation Therapy Most people have heard of ultra-violet (UV) rays. These are created by the sun, and can gives you a nice tan as well as skin cancer. What makes these rays special? Why do waves of lower than ultra violet frequency not cause cancer like the high frequency ultra violet rays? The answer has to do with the way energy contained in these waves affects other atoms. When electrons are in an excited shell, they cast off energy by releasing light waves (photons). These light waves may bounce into and excite other electrons. These waves that are reflected and re-reflected eventually lose power and energy, like waves in a pool. Eventually, the energy completely diffuses. Starting with ultra-violet light, and including all higher frequency waves, the energy contained in the wave is enough that when it hits another atom/molecule, it can blast an electron right out of the atom/molecule‟s orbit. This type of radiation is called ionizing radiation, and the molecule is then said to ionized, because it has lost an electron, and is positively charged. Ionized atoms are unable to bond with other atoms, because they don‟t have an electron to share – they need to recoup the lost electron. The body can deal with a limited amount of ionized atoms. The damage can be repaired by replacing them with other non-ionized atoms and removing the ions from the system. When a large number of these ions spill into the stomach, or the wall of the stomach itself is ionized, it causes radiation sickness. In the short term, too much radiation at one time means cells can no longer repair themselves fast enough. The cell‟s structure breaks down and dies. If enough cells die, the patient will die. Over time, exposure to radiation can cause

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damage to cell‟s DNA. In the DNA repair process, it is sometimes corrupted enough that the cell turns cancerous. The reason that radiation is used as a weapon against cancer, and why it is effective, is that cancer cells are generally less stable and less able to handle ionization than the body‟s normal healthy cells. Cancer cells, by their very nature, are damaged cells already, so the plan behind radiation therapy is to give just enough radiation to kill the cancer, which is weak against radiation, and leave the body hurt but still alive. There are many types of particles that can be used in radiation, including photons, beta particles (electrons), alpha particles (helium nucleuses with no electrons) and neutrons and protons, the building blocks of atoms. Most radiation machines are only capable of one type of radiation. Depending on the type of tumor, and its location, different types of radiation may be employed to attack the cancer cells and avoid normal healthy cells. Some radiation does not get much beyond the skin. In my case, the radiation had to be penetrating enough to pass through the skull and be effective on my brain. Other Types of Scans X-rays, and CT, PET and MRI scans all fall under the domain of “Radiology” at the hospital. Along with these machines are Radiologist doctors who are specialized in the administration of these type of scans, and are experts at reading the results. Normally with a cancer patient like myself, the oncologist benefits from a second set of eyes to back up what they see, and to make sure they don‟t miss anything. Such was always the case with me, and Dr Fetell always confirms his evaluations of any changes in my brain with Dr Phaff in Radiology. The MRI is the most detailed, most modern type of scan, but it is also the most expensive. The expense of the scan is not in its operation, it is that time in the machine is valuable, and there are more people who want or need scans than can be accommodated. The patients with less need for the detail of an MRI can be sent to a CT (pronounced „cat‟) scanner, which provides almost the same level of precision. The CT, or Computer Tomography scanner, looks like a big donut, actually an array of receptors around the scanned area that create the three dimensional image. The patient lies on a table that passes through the donut The upside of the CT scanner is that it operates faster than the MRI, works silently, and is cheaper. The machines are generally more reliable because they are less sophisticated and have less parts. The MRIs break down more. The downside, aside from a loss in detail, is that the CT scanner uses radiation to do its scan, which could over a very long period of monitoring, lead to complications, and even when scans are not regular, getting any radiation is less desirable. Finally, a simple x-ray can sometimes reveal a problem. Though not adequate to monitor a patient‟s progress in the fight against cancer, sometimes an x-ray can show a shadowy region that indicates a possible tumor. These types of discoveries are almost always by accident; many people with lymph node cancers (Hodgkin‟s or non-Hodgkin‟s) discover the problem when they need an x-ray because they have hurt their chest and are worried about a cracked rib. My Radiation Regimen Radiation used to be measured in rads (One rad is defined as 1/100 joule of radiation energy per kilogram of material being radiated) and rems, which are calculated by multiplying the number of rads by the relative biological effectiveness (RBE) of the particles delivering the energy – electrons have an RBE of 1, alpha particles have an RBE of 20. Today, radiation therapy is conducted in centigray (cGy). Centigray is a measurement of how much radiation is actually interacting with the patient‟s body, in terms of Joules/Kilogram. Since it is measured by how much radiation actually interacts with the patient, and not just how much radiation is being shot, it gives a better idea of how much radiation patients have received, and how much they need to get in their regimen. For my treatment, I will receive 5400 cGy, divided into fractions of 180 cGy a day for thirty days. The reason for splitting the treatment over many days is simple: It gives the body a little time to heal in between sessions. 5400 cGy all at once would be fatal. It also wouldn‟t be as effective at eliminating all pockets of cancer, because they would have to leave space between irradiated areas, and any cancer in those areas might escape. In order to pierce the skull and still have waves carrying a sufficiently large amount of energy, I recei ve photon (light) waves at an x-ray frequency. These photonic waves carry a charge of 2 – 6 megavolts. Other Kinds of Radiation Therapy The field of radiation therapy is not limited to the process described above. There are at least three other kinds of radiation therapy that, although less widely available and used, are often more effective on some types 82/9 8

of tumors. These “other” treatments are normally not as effective at killing all the cancer everywhere in the affected area, but are extremely effective at knocking out new sites where cancer is growing, and they can deliver radiation to a much smaller area, sparing the rest of the body. First, there is stereotactic radiosurgery. It involves a surgery, similar to a procedure to remove the tumor, but instead of excising the tumor, they implant a fragment of radioactive material into the center of the tumor. This method of treatment is great because it can get more powerful radiation to the site of the cancer without irradiating much else. However rogue cancer cells that have broken off from the tumor will not be killed using this technique. In many cases, it is used in combination with standard radiation as the “boost” segment of radiation, to make sure that the original tumor site is neutralized before swathing the whole area with radiation to get any last cells. In my case, the surgery to implant the radioactive chunk would be too risky. The next new technology, only recently developed, tested, and deployed, is gamma-knife radiation. Gamma-knife is able to irradiate the tumor location without affecting anything else around its target, and it is accurate up to a couple millimeters. With gamma knife, a patient can get the whole dose of radiation in one sitting and be done. Once again, though, the shortfall of this technique is that it will not kill random rogue cells that are still lurking around the area, and even if they are only a fraction of a centimeter away, they will be unaffected. Gamma-Knife is most useful for patients that have already had standard radiation, and relapse. The third technique, even newer than gamma knife, involves using atoms, rather than electrons or photons, to deliver radiation. While photons can penetrate straight through the body, and electrons can get to a tumor that is a couple of inches deep, protons (hydrogen atoms with no electrons) and alpha particles (helium particles, again with no electrons) will drop almost all their energy right at the surface of whatever they hit. This can be very effective when treating skin cancers, where the cancer is very close to the surface of the skin, and we would like to avoid irradiating parts of the patient that are healthy. Since the 70s, doctors have been trying to shift cancer treatment from radiation therapy to chemotherapy. The hope is that we can create drugs that will be more selective in the cells that they kill, and will be more effective at fighting cancer than simply subjecting the patient to a series of extremely large doses of radiation. All this being said, radiation is still the gold standard in cancer care. It offers the best chances of an effective cure for the time being, and despite the strides we have made in chemotherapy, the chemo is still just complementary to the main weapon, radiation.

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Chapter 18: Zapped! Dealing with radiation
45 days before radiation We bring the MRI slides up to Doctor Fetell‟s office. With chemo now behind us, we are feeling hopeful that we have reached the end of my treatment, that the journey is over, and that life will get back to normal. The slides are tucked into a brown envelope labelled „MRI – DO NOT BEND‟ Each one of the slides is broken down into a four by four grid, and different slices of my brain are shown in each of the different sections and on each different slide. There are about 100 slices through my brain in all. The slides are on the same sort of material x-rays are printed on, and look very similar, although much more detailed. Doctor Fetell calls us in. We enter his office and hand over the MRI, which he studies carefully. This MRI, taken just a few hours ago, will hopefully be the end of the journey, it will show I‟m cured. He starts taking the slides from the MRI and my last one from before chemotherapy, putting them both up on a back-lit board (the kind doctors use for x-rays), and comparing them. I am so excited and anxious that I can‟t sit still. I keep telling myself to be confident, that after today I‟ll be free, all of that chemo must have done the trick. Dad is talking about my return to Stanford in January. Chemo was hard, but I made it. Doctor Fetell looks at the slides a long time, then looks at my chart, then back at the slides. He is sighing a lot. Finally, he looks up. His face looks serious, but that‟s normal. “Well,” he says softly, “I don‟t like these numbers on the cancer markers revealed by the blood tests. And I‟m not sure about some shaded regions on these pictures. There may still be something growing. We‟ll need to go ahead with radiation.” Mom, dad and I, are stunned. We cannot believe it. Dr Fetell has told us that chemotherapy might be all the treatment necessary. He had told us that he wanted to avoid radiation if possible, because of the possibility of cognitive damage. We were hoping this would be our last day here; it feels like we‟ve been double-crossed. “I thought you said that if everything went well, there would be no need for radiation. Didn‟t everything go well? Didn‟t the cancer marker numbers go down? Hasn‟t the remaining tumor shrunk?” The cancer markers we are referring to are AFP (alpha-fetal-protein) and beta HCG (human clorionic gonadotropin). Both of these proteins are found in trace amounts in the blood of a healthy person, but can be elevated by cancer, especially my cancer. AFP and HCG are also produced by a fetus when it begins to grow in the mother‟s belly, and by very basic stem/germ cells. Their presence can mean pregnancy, or a germ cell tumor. Doctor Fetell says that the markers now are normal, but it‟s the pattern of the markers that worries him. When I had had surgery in Germany, they were high. When I came back to the United States and had surgery, after the tumor had been removed in Germany, they were back to almost normal levels, yet when I had a spinal tap before chemotherapy, they were high again. Perhaps high enough to indicate something more cancerous, something that was missed in the pathology report, possibly Embryonic Carcinoma. Carcinomas are the most common type of cancer, and also the most aggressive and fast-growing. In my case, it has the potential to grow at a much faster rate than Germanoma or Teratoma, and if there is any of this still alive, I could be in big trouble. Dr Fetell tells us that there is a possibility that trapped within the tumor was a yoke-sac, which could be embryonic carcinoma or something else. These cells could have been released in surgery, and the chemotherapy would not have affected this kind of cancer. The second thing that troubles him is that while the original tumor site has shrunk, which indicates success, a new site, nearby in the brain, looks slightly brighter. It might be scar tissue, but it could be cancer. Dr Fetell is more agitated than we‟ve ever seen him, which is still not very agitated. Dad asks whether second look surgery would be a preferable alternative to radiation. He tells us that this had been discussed, but ruled out because the pattern in the marker levels would still make him favor radiation, whatever the results were. We try desperately to convince him that it is just scar tissue. Dad starts arguing that the high cancer marker reading in July may have been a mistake since it‟s out of line with the others. Dr Fetell is steadfast. It‟s my decision, but he advises radiation. We have to be sure the cancer is all dead. I am dejected. I felt certain that today would end in celebration. Now, the word of the doctor that has spread a dark cloud over the whole day, and over my life. People I‟ve talked with about my treatment have told me that radiation could lead to the one thing I fear most – cognitive damage. Will I survive all of this, only to be mentally crippled by radiation to my brain? More treatment now seems unnecessary, impossible, and unfair. Mom asks if Dr Fetell would mind if we got a second opinion. He says we should feel free to do so. He

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recommends that we go to the Beth-Israel team on the upper east side, the same clinic mom almost chose for my primary cancer care. 35 days before radiation We meet with Dr Isaacson, the radio-oncologist at the hospital, so that I will be ready to start radiation if the second opinion confirms the first. Today, we consult Dr. Steven Isaacson about what radiation does, how it works, and why it is still, as Dr. Isaacson says, “the gold standard worldwide. You don‟t want to leave your brain in the hands of chemotherapy alone. I have the ultimate weaponry.” I am very skeptical. Do I want radio-therapy? Hell no! I am worried about the effects it will have on my intelligence and personality. Do I need radiation? I doubt it; I don‟t know what could have survived that chemotherapy (and wasn‟t that supposed to take care of all of it?) Dr. Fetell once said something about radiation having “cognitive effects.” I want to make sure that all other options are explored, all avenues and opinions set out before us, before we do anything. Mom and dad are already resigned to the inevitability of radiation, and I will try to get over my trepidation, in case it really does happen. Dr Isaacson is an easy man to like. Tall and slim, energetic, entertaining, good humored, and jocular. He looks at me as though I am nothing more than a fresh brain, ready for his delectation, though I am sure he cares a great deal about saving my life. He tries to make radiation therapy sound like fun. He reminds me that there are no needles, that it is less than an hour per treatment, versus almost the entire day in chemo, and that it is the most effective, best way to kill whatever is left in my head (although when he puts it this way, it sounds pretty scary) Radiation therapy will only last 6 weeks, (versus 12 with chemo) and will be easier on my body. The way he carries on about the miracle that is radio-therapy, I can‟t help liking him. Dr Isaacson explains what needs to be done before I can start radiation therapy. I need a plaster mold of my upper body. The mold will take about a week to dry. On my next appointment, I will like in the reinforced paper mache cast and my treatment will be programmed into a computer. My head,neck and back will be tattooed with little dots where the radiation will be directed. Sometime after that, I will begin radiation therapy with two “boost” weeks (ten days total) of radiation specifically to the tumor area, radiation to break down any last remaining clusters of cancer at the site specifically. After this, I will receive four weeks of whole brain and spine radiation to take care of any rogue cells, anything in my cerebral-spinal that might still have survived my previous treatment. All together, thirty days of treatment. He also glosses over certain risks. Radiation to the brain can damage the hypothalamus which controls short term memory. In the best case, that would make it me more forgetful. In the worst case – who knows? I might wake up one day a completely different person. There was also the possible damage to my endocrine system Dr Isaacson adds that this is the 2nd most intensive radiation treatment there is – the worst is what they give Hodgkin‟s patients. I hope to God I never have to experience it. 30 days before radiation We head up to Beth-Israel for a second opinion on radiation. The trip is exhausting: B or D uptown to 34th, then change to the L train east, one stop, change to the 4, uptown again, up to 86 th street, and then a 20 minute walk to the hospital. I am laden down by our hefty bag full of old MRIs, and the long walk along with the added weight of the slides makes this by far the most exercise I‟ve gotten in quite a while. I arrive at the hospital exhausted and dizzy. The Beth-Israel hospital is in a grand old building with Victorian style architecture. Mom and I head to the pediatric oncology ward, the center that handles my type of tumor. We find our second-opinion doctors, and finally unburden my entire medical history, including all the MRIs, medical reports, blood labs, and case history to them. The doctor who meets with us, Dr [can‟t remember his name now. It‟s in my palm pilot] asks us questions and gets us to repeat the history of my condition. We answer all the questions, shake hands, and are out of there in about an hour and a half. He tells us he will get back to us in about two or three weeks. 19 days to radiation We are back at New York Presbyterian for the first step in the radiation process –building the body mold. The point of the body mold is too immobilize me while receiving radiation. Without some sort of stabilizing mold, radiation therapy could not work– the patient would fidget too much. I will lie in it, they will line me up with the machine, and zap me. The process of making the mold is fairly involved and time consuming. Wearing just my boxer shorts, I lie on a table, face up. My chest and arms are being cast, because for radio-therapy, I will be lying face down, 85/9 8

and the chest mold will prevent my movement. Technicians wrap me with seran wrap so the plaster doesn‟t stick to me, and begin plastering me with long white sheets of plaster, the same kind of plaster we played with as children. I shut my eyes and think about being back in kindergarten. We used to play with plaster, putting it on everything, blocks, books, plates, everything. Pretty quickly, I remember we started plastering ourselves, our arms and feet, then peeling it off and staring at the amazing copy we had created. As they are working on me, I imagine this is what is happening. As the technicians start with my arms and hands, the memories from all those years ago flood my mind. They continue on to my chest, adding layer upon layer to increase its strength. Finally, they do my head, leaving my face exposed, but circumnavigating around my chin and forehead to stabilize the head and neck. After leaving me to dry for a few minutes, they slowly peel the mold off. It is an amazing experience; it feels like my entire skin is coming off, and underneath I have another fresh layer already prepared, like a snake. I look at the plaster impression of my front torso, arms and head. Impressive and scary. I hope it‟s been done right. 11 days before radiation The “simulation” appointment takes four hours. I come out of it sore and tired, and they have come out of it with an exact plan in the computer for how I should be lined up when I start the actual treatment. To achieve such accuracy, they have given me fourteen tattoos for use in aligning the radiation machine. Usually, brain cancer patients get six weeks of full brain radiation, but just to the brain. In my case, because of the possibility of a new tumor, they will radiate the spine and full brain to be safe. In both cases, each week of radiation means 5 continuous days, Monday to Friday, of radiation therapy. 6 days before radiation The second opinion comes back as my parents had expected and I had feared. Radiation is absolutely necessary. I am stuck, I would have to do the radiation. I worry about what this will do to my mind. I wonder what I‟ll be like after the treatment; will I be stupid? A walking vegetable? Will I have a different personality? Will I be a shadow of who I am now? Having coming so close to the end, I now worry that the radiation will take from me the one thing I have left, my mind. Radiation, day 1 My first day of radiation, and it does not sit easily with me. With brain surgery, I knew it was inevitable, that it had to happen. Now I was wondering if I wasn‟t already healthy, and would be just hurting myself (maybe killing myself) by continuing with more treatment. I am scared about what the radiation is going to feel like, what it‟s going to do to my body. Will it feel like I‟m being stabbed, impaled by powerful rays? Is this going to hurt? What is going to happen to my brain, and can I be sure it will kill the cancer and leave my mind alone. I wait in the reception area. I don‟t want to show how much I am afraid. When I went into brain surgery, I knew I would come out ok – I was sure of it in my heart. Now, I don‟t know. I worry that it might finally break me. My name is called; the time is now. I head back into the treatment area. The entrance to the treatment room is behind a thick steel door which will be sealed behind me to shield those outside from the harmful rays. Inside the chamber is a giant machine, separated into three connected parts. There is a thick main section, about five feet deep, six feet wide, and ten feet high, set against the wall. Printed about six feet up on this piece is its title: “2100CD by Varian”. I feel a shiver run down my spine. Attached to the first piece at the top is a large, thick, rotating arm called the “gantry”. The gantry ends in a circular frame, within which is a similarly shaped aperture, the lens the radiation will come through. Although I will not be able to see it in operation, because I will be lying face down, this „arm‟ will rotate around me and fire radiation from different angles, in order to apply the radiation without unnecessarily exposing other areas to the same extreme doses. The third piece lies below the gantry. A thin table, perhaps a foot or a foot and a half wide, capable of swiveling from side to side, is connected onto the bottom of the main section. My body mold lies on top of this table. This colossus is an altar to the advances in science and medicine. It is scary and awesome, and my apprehension grows as the technicians tell me to take my shirt off and get onto the table, into the mold. Aside from the footsteps of the technicians, the creeking of the door as it locks and unlocks between sections of my treatment, and the occational query to make sure I‟m doing alright, the room is silent. The cold air begins to seep into me, giving me the chills. But when I ask if they can make it warmer, I learn that the cold air cools the

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machine, and is an important requirement for its correct and safe operation. The radiation clinic, unlike the chemotherapy ward, needs to be in the basement because the earth around the walls keeps the cold in. The lights go off. I can no longer see the technicians, but I feel them rotating the table left and right, rotating the gantry around me to one side, and can see red grid lines projected onto the floor around me. They are setting me up, positioning my body to line up exactly right. They push at my bare back, rotate my head slightly, twist me around some more, often going back and forth in the directions they push, trying to get as exact as possible. Eventually, they are satisfied. They tell me to try to hold as still as possible. They leave the room, and I wait to get zapped. I try not to move. But what about breathing? They never told me what I should do about my breathing. Should I hold my breath? Breath shallowly? Breath deeply? God, I hope I am doing this right. My head microscopically to a more comfortable position, and worry bells are going off all over in my mind. Could I have just cost myself the ability to speak or ride a bike? What if I have to sneeze? How much movement is too much? I try to remain calm and still. How much of my memory will I retain? The door shuts, the machine starts. I hear the machines at work, a semi-high pitched hum like the sound from Star Trek when people are being beamed crossed with sound lasers have in those Saturday morning cartoons. I begin to repeat to myself, “my name is Tom Jacobs. I live in New York City. My Father is Jim Jacobs. He works at the law school, my mother is Jan Sweeney, she works at the business school. My name is Tom Jacobs…” I want to preserve my short term memory. I must come out still knowing who I am. With my eyes closed, I see a blue ultra-violet light under my eyelids. It must be radiation interfering with my optic system somehow. They are flooding my head with tremendous energy. Each region that gets irradiated is exposed for about sixty or seventy seconds (this is a guess, since I couldn‟t look at my watch while undergoing the therapy) Then, the door opens, the lights come on, and they reposition me for the next region. No more than 5% of the time spent in radiation therapy is actual treatment. The rest of the time is getting set up. The total time I spend in the cast is about 20 or 30 minutes. Bill or Dan (whoever is working that day) comes over and taps me on the shoulder, “ok, you can go home now.” I am a little wobbly, but I still know who I am. Dad‟s in the waiting room. He hugs me and asks if I know who he is? He laughs before I answer, then asks for an account, if I‟m nauseous. I ask him if he thinks I am different. He looks at me intently and pronounces me “more handsome.” Dad, you big kidder! On the subway home, I feel a little weak and sick to my stomach. I push away the sandwich offered to me. I sit back resting in my seat. Dad is talking a mile a minute about all the things he wants me to do. He is always pushing me to take an active role in the “healing process”. I have gotten better about trying to get a grip on making these important decisions, but it has been hard to handle such important questions, and make decisions that could determine if I live or die. For a brain that is getting battered every day with radiation, this is a lot of responsibility to handle! I have my parents to rely on, and I know I am in good hands. Dad‟s insistent chatter, the constant noise coming from him, trying to engage me in a conversation, is incredibly irritating. I am trying to get through radiation, and I don‟t know how much energy I‟m going to have for all of his plans – the opera, movies, bowling, the Knicks. Agh! I want to focus on things one at a time for now, instead of getting carried away with one activity after another. I check my watch. Door to door it‟s been three hours: 45 minutes on the subway each way, a half hour in the waiting room, about an hour getting lined up correctly, and one minute being zapped. I am hungry again. The nausea fades before dinner time. I am try to eat all I can. I want to be ready, mentally and physically, in case something else goes wrong with my health. Maybe I will breeze through radiation. Radiation, day 4 I come out of radiation, and internally ask myself the Three Questions (the same ones from Germany) It‟s no sweat; once again my brain has come through intact and functional. Since the first day, getting treatment has been easier, physically and mentally. I no longer fear going in for treatment and coming back a zombie. Also, the sessions have been getting shorter, and today was only twenty minutes from start to finish. Every Thursday, I meet with Dr Isaacson. “So far, so good,” I tell him. “I am a little nauseated every day, but it has gotten better through the week.” I ask him if I can ski with my parents this weekend. He shows me his big goofball smile, like „hey, you‟re dreaming‟, and says, “I think you already know the answer to that.” What about receiving radiation in the future? Should it be avoided? If I am in a car accident, should I insist on an MRI (which does not use radiation) instead of a CT scan (which does)? In typical Isaacsonian fashion, he gives me a look like, “you don‟t know the power of the force, son,” he says. “They could leave you 87/9 8

in a CT scanner overnight, or give you 1000 x-rays, and it would be equal to just one of the doses we‟re giving you.” I listen silently, thinking to myself, “That‟s a helluva lot of radiation”. What about my cell phone? I‟ve heard that cell phones cause brain tumors. Dr Isaacson says that there is no evidence that supports this. He tells me not to worry, except about piling up too many minutes. Should I be taking vitamin supplements with anti-oxidants? Dr Isaacson looks askance. “No,” he says, “definitely not. A multi-vitamin is ok, but super doses of vitamin C could be harmful.” He explains that there is some evidence that taking Vitamin C may feed a cancer. There is stronger evidence that a large dose of Vitamin C will block the effects of radiation, because it might remove the ionized particles that are killing the cancer. We leave with the doctor‟s good wishes and remarks that I am looking well, doing good, and with our questions about food supplements answered. It‟s trench warfare now, and the remains of the tumor‟s forces are hoping desperately that the radiation will leave some of them still alive. Radiation, day 6 The whole day‟s treatment at the radiation clinic can take me 20 minutes, or 2 hours, if the technicians need to “realign my junctions”. After every 5 radiation treatments (usually a week, but sometimes I have to miss a day because of a holiday) the technicians need to change where the fields of radiation overlap. In my treatment, there are four radiation fields – brain from the left, brain from the right, upper spine, lower spine. There must be no gaps between these fields or else some cancerous cells could escape with no radiation. Moreover, if they didn‟t change where the fields converge, area places where the fields meet would get twice as much radiation as the rest of the brain and spine. Not good – too much radiation can cause a new cancer. So they realign the machine so that the fields meet in a different spot, thereby distributing the radiation more evenly. This realignment takes much longer than an actual treatment, because they must set up and measure exactly where my body lies. If they find that after taking some measurements that there is a problem, they may have to start all over again. During this time I am not allowed to move at all. My shoulders are particularly unhappy with being held in place by the cast, and scream at me through the whole procedure. Today, the technicians need to realign only two of the four fields (the left and right brain fields), because they haven‟t started on the spine yet. Still, it takes 45 minutes. I grit my teeth and bear it. Every time I think I have to move, I think about messing up the treatment. Putting my mind over the matter, I force myself to endure discomfort and pain. Radiation, day 10 “What‟s the green stuff?” Sam, the 10 year old son of Robyn Forst, my mom‟s long-time friend, is examining my bald head as I kneel in front of him. I have several big, curvy scars up there, but what‟s this “green stuff” he is talking about? When was the last time I showered? “Green stuff?” I ask, “what green stuff? Where?” “Is that … is that your guts?” I burst out laughing. I have no idea what this kid is talking about, but assuming there is something green up there, chances are pretty good that no, that is not my guts. Radiation, day 11 One third of the radiation is behind me now. Up until today, they have been giving me „boost‟ radiation to the tumor site. Today, we begin full brain and spine radiation. So far, radiation has not affected me much differently from chemo. I feel a little nauseous afterwards, but it has not interfered much with a fairly normal life. In fact, I‟ve been working part time for a computer startup company. Now the going gets tough. Another junction realignment. This time they also align my spine and measure where the junctions intersect on my back using the tattoos they gave me to line it up. It takes forever, and my shoulders are in agony. I ask if I can take a break to stretch. The answer is: “No, Remain absolutely still.” Easy for them to say. They finish realigning me, and tell me that I can stretch out now. My left arm is so sore that I can barely move it. I lift myself out of the cast for a minute or two, trying desperately to bring my shoulder back to life. It does not work. I go back into the cast and prepare to be zapped. Radiation to the first two fields – the brain fields passes by uneventfully. It feels exactly the same to be getting this whole brain radiation, and isn‟t upsetting my stomach. They then move the gantry directly over me, and set up the first field on my spine- the upper field, for radiation. They twist me until I fit exactly right, the door closes, and they start the treatment.

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“Oh shit!” I think to myself, “what do I do about breathing?” Won‟t my back move? I can‟t believe I completely forgot to ask them if I am supposed to be breathing in a special way or just normally. Surely I have to breath; I can‟t be expected to hold my breath this entire time, can I? As the noise starts, I feel what must be the radiation entering my body. It feels like being riddled with bullets that are not doing any damage, but are shooting straight through me all the same. I try to stop breathing, and when this inevitably fails as a permanent solution, I start hyperventilating and taking very small breaths so that my movement is minimized. Later, I would learn that they correct for your breathing when they set you up, and as long as you are breathing through the setup line (that is, as I breath, my back moves from being too far on one side of the measured spot, to approximately an equal distance off on the other side) everything is cool. Shouldn‟t someone have told me that? Hey guys, there‟s a living breathing patient here. I keep my eyes closed and concentrate on being still. My saliva tastes caustic. I can actually taste the radiation that is being blasted through me. It tastes like ammonia, like death. Suddenly, the noise stops. That area has been treated for today, and it is time to move on. My body feels like it‟s been hit by a brick. My eyes roll in my head, my taste buds are electrified, and my stomach rumbles as the radiation seeps down my esophagus. Radiation to the 4th area, my lower back (and stomach, as the waves pass through my other organs on their way out) is by far the worst. I am keenly aware of the energy blasting through me, not ceasing at the spine, as I would prefer. It feels like I‟m being ripped apart. My stomach is in utter turmoil, and my intestines are protesting. I steady myself and try not to move. Just when I start to wonder if it will ever stop, the machine switches off. Finished - - for today. I worry about my genitals which are now in the field of radiation. Dr Isaacson told me that the genitals would be shielded, but they were never covered with lead shield or anything. Will I be sterile? Could I be made impotent? I hope the technicians haven‟t forgotten. Radiation, day 13

My stomach is starting to churn again, and before I know what is happening, I retch into a brown bag which dad always carries on the subway ride home from the hospital for just this eventuality. I feel miserable.
I am not squeamish about vomiting. If I have an upset stomach or a hangover, it does not bother me to vomit. There‟s a good reason for it: Something in my stomach needs to come out. This radiation-induced vomiting is different. For one thing, it is not because I have any food in my stomach to purge. My body is trying to purge radiation. Unfortunately, vomiting does not solve the problem. I am retching every minute or so, without achieving any relief. I feel absolutely terrible, not to mention completely drained. Even the eleven hours of sleep a night I‟m getting now is not helping me here. The firm I have been working for, Nataki, is desperate for me to come in to do some programming. There are only three Java programmers and they need results to attract more venture capital. I try to go. Dad is exasperated. “They cannot plan on running their company on the back of a kid with brain cancer who is undergoing radiation.” I calm him down, but call in sick. Radiation, day 14 I stare at Dr Isaacson pathetically, hoping he‟s got an anti-nausea medicine that will be effective. Even if it hadn‟t been our day to meet, I would have found him or his assistant, Dr Gewanter, today anyway to ask for an anti-nausea drug. Dr Isaacson says he can and will prescribe an anti-nausea drug. “Now,” he said, with THAT SMILE, “I‟ve got pills, OR… I‟ve got something stronger, if you think you need it.” “What is the something stronger?” I ask, thinking that it‟s got to be an injection.. “Suppositories.” He says half grinning. I tell him I would prefer a pill. “I thought so,” he says, “you don‟t look like a suppository kind of guy.” I tell him that if the pills don‟t do the job, I‟ll take the suppositories. Back at home, I call Emily to keep her updated on how I‟m doing. She sighs, tells me that she‟s happy for me about the pills, and glad that radiation seems to be going without a hitch. It‟s hard talking on the phone with her, because we both miss each other so desperately, and it is so frustrating to be so far away, particularly for her, because she can‟t see me or help guide me through treatment. Every conversation reminds us how completely vexing the distance problem is. Still, her nightly phone calls are a big emotional boost to me. I constantly remind myself that if she can stay committed to me, still believe in me, and still care about me even with all this distance, I must at least believe in myself. 89/9 8

Radiation, Day 20 With the help of the anti-nausea pills, I am once again sailing through treatment. I have even returned to work at Nataki. I program for 3 or 4 hours in the morning before I go to radiation. Last weekend, while we were up in Vermont, my hair fell out again. Now, all I‟ve got is just a single clump on top which looks ridiculous. I am so embarrassed by it that I make sure to wear my ski hat around everywhere, even sometimes to dinner at home. I am tired, beat up, and funny looking, but I feel really now. Someday, this will be behind me. That day is shortly approaching. I can feel it. Radiation, day 22 I lie in bed, half asleep, watching The Matrix on video. It is the first non-comedy I‟ve seen in about 7 or 8 months. Dad worries about my watching it. When he started digging into the survivor literature, he found a book called “Laughing Myself Back to Health”. It was a story about a cancer survivor who credited laughing and positive feelings to his restored health. Dad fixed on this as a way to help me, and then positively asserted that I was to have no more negative feelings, no doubt, and no negative or even neutral input. Everything should be positive, optimistic, and light. It seemed like a sensible idea, and we began renting funny movies to watch at night. The funny thing is that comedies didn‟t lift my spirits. To be sure I was laughing, but I had the feeling this was too contrived and phony. After three or four comedies, I suggested a movie from a different genre, maybe action or drama. Dad only wanted me to watch comedies, have only good feelings and good thoughts. But I realized a few days ago, that I can‟t bullshit myself. I have to feel the way I feel. And if I feel bad, I have to confront the issues or fears I‟m having, not run away from them. It is not fear and sadness that I should be avoiding, but the fear of feeling fear or sadness. So I have resolved to watch whatever movies I want and let the feelings flow. Radiation, day 24 “… skinhead …” We enter the subway on 168th street, right near the hospital. There is a group of black kids, probably about 14 or 15 years old, hanging out around the turnstiles, and as I enter, I hear the label I‟ve been dreading since starting treatment. Skinhead. What to do? As a street-wise New Yorker, my guard is up. I weigh my options, and turn around. I hear whispers, “oh shit! Now look what you‟ve done. You‟re a stupid idiot!” one of them say to another. I smile at them. “No, I‟m not a skinhead. I‟m just in cancer treatment at the hospital here. They‟re giving me radiation and chemotherapy. That‟s why my hair has fallen out. It‟s not a political statement, I‟m just pretty sick.” I make sure to keep smiling and not act defensive or accusatory about the comment I‟ve heard. I don‟t want to start a fight, I want to educate. “Oh, shit. Look man, I‟m sorry. I‟m really sorry.” The kid looks like he‟s truly embarrassed. I know he will not rush to judgement on looks alone in the future. I smile again, and tell him it‟s ok. I‟m happy he called me a skinhead and that I could clear the air. A lot of people probably think I‟m a skinhead. I wish I could clue them all in.. Radiation, day 26 My last week of radiation. Even Dad can‟t get me out of bed these days. But I am on the last lap, the home stretch, and it is sweeter than any race could ever be. Here, making it to the final ribbon means I survive. It means I can finally start my new life, and do all those things I wished I had done while lying in the hospital in Germany. Radiation, day 30 I am ecstatic. I go all around the radiology ward, slapping nurses, technicians and doctors high fives, shaking hands, wishing other patients well, telling them they are going to make it. It‟s been damn tough, but I made it. There‟s no more scheduled treatment. I better be cured. It is January 11 th, two days before my 22nd birthday. I‟ve been fighting cancer for so long, I hadn‟t really considered what it would feel like to be completely done. „Done‟ was a word that had almost fallen out of my vocabulary, but here I am. It feels wonderful and weird. I think about how tomorrow I‟m going to wake up and not think about getting treatment, or trying to get 90/9 8

healthy, or if I‟ll make it through with my brain still intact. I‟ll be thinking about something else, and whatever it is, I will be able to think in a completely new way. I can do anything now; life is an open book.

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Chapter 19: The Verdict: Am I finished?
June 15th, 2000 The MRI clinks and clangs and does its thing, magnetizing my brain, and transforming all the captured data into a nice little picture. I shut my eyes and try to relax, an impossible task given the noise the MRI makes, but I always try. I‟m relaxed and in a kind of meditation, and while I‟ve had so many MRIs lately that they are pretty boring now, I am looking for a way to make them more fun (or at least more productive) Maybe with my eyes shut, I‟ll think of something profound. The MRI is part of my life now; every three months or so, they stick me back in. My MRI is done on a closed MRI. Some modern MRIs are open MRIs, which let patients see out in all directions. I‟m sure that for scans to the brain, this is undesirable, as patients could potentially find something they want to look at, and unconsciously or consciously move their heads (or their eyes, if the eyes are to be examined), wrecking the scan. For MRIs to other areas, doctors let patients bring in CDs to listen to while the scan is going, but not for brain scans, because once again, the stimulus could lead to false results. This MRI looks like a big (14‟ x 6‟ x 8‟) box with a tunnel going about three quarters of the way through it, open at the front end about three feet off the ground. In front of the tunnel, connected to the MRI, is the scanning bed which can slide back and forth, into and out of the machine. I lie on the table, and the technicians stuff ear plugs in my ears, immobilize my head and neck with padding, then move the wave reception apparatus over my head. It looks a little like an oversized medieval helmet, with receptors inside vertical bars encircling me. The table slides backwards into the tunnel, which is just wide enough to accommodate my shoulders. It is dark inside, the only light coming from the entrance by my feet. the technicians put around me. I can see out via a mirror on the apparatus around my head. The view is so limited though that it‟s not worth bothering with. I shut my eyes and wait. I finish up with the MRI, head back to the waiting area, and collect my wallet, palm pilot, keys and metrocard from Dad. Because the MRI works with powerful magnets, any metal objects, credit cards, metro cards, cell phones, or electronic keys (the plastic things you get at a hotel) are forbidden, although my belt buckle is ok. There is a long list of metal things on the sign in sheet at the front desk, listing things like pace makers, prosthetics, brain clips, or metal in the eyes as possible things the doctors need to know about. Happily, I can answer „no‟ to all these questions. The technicians always remind me to store my wallet and all metal things before getting into the MRI, but I always give all my pocket stuff to dad before going in. Two hours later “… Same.” Dr Fetell is going through the set of MRI slides from this morning. It is six months after the end of radio-therapy, and 3 months since my last MRI. This is where the rubber meets the road. Can I have my life back? Mom, Dad and I stand in his office as he puts up to the light the matching MRIs from March and June, looking for subtle differences, particularly in the tumor site. I can hardly breath. This is really nerve wracking! What if it wasn‟t successful? What if something‟s growing? How will I deal with that? How will mom, dad, and Sophi cope? We are very quiet. Our eyes shift back and forth from Dr Fetell to the illuminated MRIs – numerous pictures of my brain each showing a different three dimensional slice. There is a strange smell in the air, not any odor that is coming from a source, but a feeling. It smells like suspense, the stakes couldn‟t be any higher. As Doctor Fetell examines each picture, I feel dizzy. I think I see a dark spot. I hold my breath, expecting him to say, “hold on, this doesn‟t look right…” but he keeps repeating “same”. The tension builds. “… Same.” I try to imagine what will happen to me now if he says, “hold on… there‟s a problem.” What will happen to me? Will I die now? I keep thinking that instead of “same”, he‟s going to turn around and tell me “I‟m sorry.” I can‟t bring my mind to confront the fact that if this hasn‟t worked, I will probably die. They‟ve given me the best treatment that exists, and if I‟ve still got cancer … that‟s it for me. If I‟ve still got living cancer in there, I‟m almost certainly dead. Please God, please. The only thing I am prepared for is good news. That is the only way this can end, the only way it will make sense. I‟m sure Dr Fetell realizes that he holds my whole life in his hands. My god, the man does this all day long. How does he deal with the responsibility of pronouncing the verdicts? Whether I have a future depends on

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his next words. I‟ve been battling for over a year now, the only thing I remember, the only thing that seems real to me now, is battling cancer. Now millimeters on shadowy charts means life or death. “… Same.” How many more comparisons must I endure? I try to think positively, but my fear triggers pessimism. Please God, let me survive. I‟ll be good. I‟ll make you proud. “… Same.” Dr Fetell turns around. It‟s over. There is no sign of tumor growth. He gives me a smile, something I have never seen from him before. “Looks like we got it.” I am frozen, yet sweating, mind empty, thinking about what I should be thinking. What am I supposed to do now? How am I supposed to react to this wonderful news? I think that maybe I‟m dreaming. My parents and my sister hug each other and me. We all exhale with huge smiles on our faces, beaming joy and relief, filling the room with joy and love, enough love for the whole world. I collapse onto a chair and start to cry a little, thinking about the hard journey I‟ve taken to get here, and all the nightmares along the way. “Clear”. What a sweet word! Dr Fetell tells us he needs to call Dr Phaff, the radiologist in charge of administering the MRIs. He too has read my MRIs, and Dr Fetell wants his opinion, in case anything was missed. “Yes… That‟s what I thought too … no new growth … now would you say the tumor was touching the pineal gland, or has it pierced it? Pierced? Ok. Thanks a lot.” My heart stops. What gland? That sounds like new growth, no? What is growing? Maybe it‟s not over after all. We have overheard the doctors words, but no one wants to risk speaking. What the hell is going on. I feel like the entire universe is about to explode, with my brain right at the center. Dr Fetell turns to look at us. We cannot read him. “What is the pineal gland?” Mom asks softly, our relief shattered by what we‟ve just overheard on the phone. “What gland?” Dr Fetell asks, confused. “Oh! That‟s the trouble with only hearing one side of a discussion. We were talking about another patient.” Remission is when a disease or condition that was previously present becomes a symptomatic. Although it may still be present in the body, a person in remission from anything – herpes, chicken pox, or cancer – no longer shows visible signs of having the illness. Remission from cancer for me starts now. I am done with treatment and the tumor is not growing. Remission is the best I can hope for the next 15 years (at least), but it is enough. I am still alive, and I am going to enjoy any and all time I have. Thank you God, for giving me back my health, and delivering me through these dark days. You have made good on your part of the bargain, now is my turn to deliver what I promised. I swear to you, you will not be sorry that you took a chance on me. My heart starts again, breathing returns to normal, and my eyes, which have been rolling around the back of my head aimlessly, focus forward again. Color returns to my face. I have made it, I have traveled that whole long road – three surgeries, 4 cycles of chemotherapy, all that radiation, the steroids, the nurses, the headaches, and the pain. How splendid it is to be alive. To look again into a bright future, where I can be anything I want to be, do anything I want to do. What do I want to be? The old Tom Jacobs is dead, left on a surgery table somewhere in Berlin. What is the new Tom Jacobs going to do? What will I become? One thing is certain, my life is forever changed. I can never go back to being the old Tom, nor would I want to. Dr Fetell reminds me that I must still return every 3 to 6 months for an MRI and blood tests, just in case there are some rogue cancer cells still floating around in either my blood or my spinal fluid. One cancer cell left alive could be enough to regrow and kill me. I will be monitored for the next 15 years, although gradually the time between checkups will widen to half a year or maybe a year. Back into the subway, our routine. But now I can‟t help thinking about all of the things I have endured. You know, the eight hour brain surgery does not seem like such a big deal. That was a rather safe episode compared to the dangerous hydrocephalus before I was hospitalized in Berlin, and before emergency surgery in New York. My parents and sister are beaming at me and taking my hands. I‟ve done it; we‟ve done it. I know that they are full of pride for my positive spirit and strength. And I‟m so proud of them. Everything they see in me, I see mirrored in them. When I was at my lowest point in the hospital in Germany, they sustained me, and their love, support, endurance, and strength never wavered. They did whatever was necessary, spared no expense, put 93/9 8

me ahead of everything else. Now it has paid off – I am alive. My sister holds me and weeps small, precious tears the whole ride home. “Oh yay…” is all Emily can say when I call to tell her. She is overwhelmed with relief at the good news, at the end of all these months of frustration and fear. “Yay,” she says again, “yay yay yay.”, again and again. „Yay‟ is our special word. I started saying it because Emily said it so much, and I liked the way it sounded when she said it- cute and pure and happy. Between us, it had come to symbolize our relationship and to mean „happiness‟ and „love‟ and „joy to the world‟. Before I met Emily, I never used the word „yay‟. I thought of it as rather common and trite, used to express „good‟ in a very melodramatic and fake way. There are many other words like great, outstanding, super, wonderful, that convey a stronger sense of the simple yay. But Emily had appropriated the word for herself, and where someone else expressing happiness might say “all right!”, she would say “oh yay”. I love the way we do this. All other words for happiness are so overused. Their value is almost completely lost by their sheer banality. „Yay‟ is our word, and it means, “I love you. I love life. I feel happy.” That is exactly the feeling now.

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Chapter 20: My Second Chance At Life
“Do you want to go up and sit in the cockpit?” I am scared again. Again I wonder, “how did I get here? Am I crazy” and “what am I doing?” Thoughts and colors and dreams fly through my mind; it is a familiar feeling, the feeling of being out of control, being inextricably tied to a destiny that will scare and possibly kill me. The small prop plane starts to taxi towards the runway and I head up to the seat next to the pilot. We take off, and I watch the ground fade away as I grow more apprehensive. I become silent. Monterrey Bay, the Pacific. The sun is low on the horizon, and in a few hours it will be night. The view is too exquisite, too beautiful, and transient to be real; It must be a dream, a dream come true. This is a happy dream, come to life, and a great closure to all of the pain, nightmares, and hospitals. For the first time since going to Berlin, the confusion and craziness is a wonderful feeling. Emily is with me, Abby, my friend from the Ski Team and former next door neighbor, is here too. I don‟t need to see their faces to know that they are thinking exactly the same thing I am. What is going to happen to me? Will I survive? Do I really want to do this? The plane rises, 6,000 feet, 7,000 feet. I watch the altimeter anxiously. They told us that when we get to 15,000 feet, we jump. I am afraid and excited about the call of “everybody out!” – once again, my life will be out of my hands. This is the beginning of a new story, the story of the rest of my life. For 15 months I fought against death. Now, I‟m back. I can breath the outdoor air again, watch the color of the trees and living things all around me, drink in sunsets as the sky turns from blue to orange to lavender, and marvel at the shifting colors and patterns of life. Friends on all sides keep asking, “how has cancer changed you?” I wonder myself. What do I do now? Who am I? I don‟t know. All I do know is that I cannot lead my life the way I did before, putting myself before anyone else, working hard for grades and a good career. Ignoring my family when it was convenient. My sense of immortality has been shattered, and I know I should be dead now. What do I do with the rest of my life that I almost lost? How do I reshape myself and my life – what do I need to be to make any of this meaningful? During my first life, I had always concentrated on me, trying to get what I wanted, what would make be better, smarter, richer, or cooler. I had considered friends and family to be secondary to these pursuits and while I loved my family, sometimes I felt like they were a nuisance. My policy was to put myself first, and then deal with my family and friends with whatever energy and time I had left. Now, all of that has changed. My family rescued me from the clutches of death (several times!) and I cannot ignore all the sacrifices they and my other friends made for me. Now, it is my friends who come first, the people who supported me, called me, and loved me while I was at my weakest moment. To them, I owe everything, every minute that I am alive now, I owe to them. A life lived just for me would break the promise I gave to God in the hospital, and even more than that, would leave me empty inside, wondering what all their pain – and mine – had been for. Lying in those hospital beds, going in for chemotherapy everyday, getting zapped with tremendous levels of radiation, I realized that love was the greatest gift and the purest beauty in the world. Everything I see all around me from a beautiful sunset or a duck with a funny song to or the hustle and bustle of the crowded New York City streets amazes me, and I get pleasure from it all. I love waking up in the morning in my own bed, out of the hospital, with Emily lying beside me, her arms loosely wrapped around me. I love rollerblading around campus, or taking my friends out to dinner. I love the look on people‟s faces when they read about my experience. After getting the go-ahead from Dr Fetell, I went back to Stanford for the Spring/2000 quarter. It feels weird to be back at school. Everybody I know is still here, and they are all still the same. But I feel different, and the things that I did before don‟t make sense anymore. The idea of taking classes and getting grades seems trite now. And the rat race to get ahead, by whatever means possible, to get the best grades so you can go to the best college so you can go to the best graduate school or law school so you can get the best job, work 80 hours a week, and be miserable, that is not what I want anymore. Going to the beach, relaxing on a hot day with a smoothie, making love outdoors under a beautiful starlit sky – these are the memories and the experiences that I seek now. Every day I think back to the hospitals, where, at my lowest point, I thought I would die. I think of how I cried for all the beauty in the world. Now I 95/9 8

experience that everyday, and I feel privileged to witness the fabulous way life works. It is the simple things in life that make me happy now. It is all amazing, and all mine. I‟m so glad that I‟ve had this revelation, and that I managed to escape from it still alive and young enough to make I make a difference. My first life – all of the memories from before going to Germany, seem like a dream to me now. I‟m sure it all happened like I remember it, but I no longer identify with those stories. In those memories, the protagonist is someone else, a person I used to know. The old me is someone else, someone I cannot be anymore. The feelings and emotions from that past life are now like the scary delusions I had in the hospital in Germany – totally unreal and bizarre. That life seems distant; I have become something so much more. I love my new life. Every day, I think about how lucky I am to be alive, how fortunate that I made it through all those near death experiences and came through it all so well. I know that I am living on stolen time, time stolen from God by the doctors in Berlin and New York. I know that God forgives me for fighting off death, but that he or she is watching me every day, saying, “ok, you‟ve got your life. Now what are you going to do with it?” I do not have all the answers, but I do have some. I love my parents, my sister, my girlfriend, and all those people who came to visit me in the hospital in Germany, or called me and supported me through words and prayers in the past year and a half. There are friends I‟ve lost through the process, but I don‟t care. The friends who aren‟t there for you when you need them were never really friends. I am not bitter towards them – they are what they are, but I do not want to waste any of the precious time I still have, living on our planet, on people who I know do not care. I went through the hardest and darkest months of my life, and have come back feeling the best I‟ve ever felt. After all of my trials, near-death episodes, the terror and the misery, I have come through wonderfully. I can‟t glance up anymore. But I can always just move my head a little bit. It makes playing tennis or basketball a little bit tougher (basketball because I can‟t follow the shots when I try to rebound, tennis because any lob or high shot has my eyes rolling in circles) but I can still drive, read, and carry on a normal life. I have lost a little short term memory, but I am more responsible and much better organized now than I‟ve ever been because I write everything down in my Palm Pilot, even the small things, and I get things done. I know now that life is too short to put off to tomorrow what can be done today. Whatever it is that needs to be done, I do it and get it out of my life and mind, so I can concentrate on good things. I may have lost a little high range hearing, but that‟s it! My mind seems to function as well as it did before (I still beat my father at scrabble!) and I only spend energy on the things and people that I care about. I have never been happier. I could not have done this alone. Without my friends, but most importantly without my family, I am convinced that I never would have survived Germany. I really would have died there. Nick, Elizabeth, Karen, dad, Sophi, Jeff, Kaye, David, Daisy, and Adam, all the people who came to visit me in the hospital in Germany, and who prayed for me all across the world, they are the reason that I have come through this so well. Without their prayers, without their energy, I know I never could have done it. Two people‟s actions in particular stood out to me: Emily, for her determination to come to Germany against the wishes of her father in the middle of a semester, and mom, because she had the composure to stay in New York and research what our options were. It was very difficult for Emily to get to Germany, and she was under no obligation to go. She was in the middle of the quarter, trying to finish her classes, and she could have said I love him, but there‟s nothing I can do for him there, and I have things that I cannot just leave here. Besides, I had broken up with her before leaving, so she didn‟t owe me anything. She had to go behind her father, tell her mother about a sick boy in Germany who she had been in love with but had never let on about before, and that she had to go see me. She packed up her stuff, told her father the night before, and flew half way around the world, to a country whose language she could not speak, just to sit by my hospital bed and smile for me. Would I have done for Emily what she did for me? I don‟t know. Now I would, but back then, I can‟t really say. She has shown me that when you really love someone not to be afraid of it, but to follow your heart wherever it leads. Don‟t run from love, cherish it! Her sacrifice – everyone‟s sacrifice in fact, have shown me the meaning of being human. It isn‟t about success or careers, it is about loving the people around you, and when the going gets rough, being able to put aside personal agenda for as long as it takes to do whatever you can to help them. Fighting with the people who you really love and who really love you is pointless and stupid, because these are the people of your life, and when the going gets rough, you can count on having them. No one will love you like your family. I guess there are bad families and evil parents as well, but I hope they are the small minority. 96/9 8

Mom‟s sacrifice means even more to me. She didn‟t know how long I would live, or the details of my situation. I could have died while she was still looking up doctors in New York. She might have been giving up her last chance to see me alive, to see my face, and to tell me that she loved me. But she thought about what would be best for me, not for herself, and she stayed. After finishing up radiation, I spoke with my dad. I told him that I was incredibly grateful to him for coming to Germany to save me. I told him I know I owe him my life, and I just don‟t know how I can ever repay him or mom or Sophi for the sacrifices they have endured, and the strength they have shown to get me through. There is nothing I can do that can show them how much I appreciate all of it. “That‟s ok, Tom.” He tells me, “I acted out of love just as you would for me and for your children. You enrich my life every day. You don‟t owe me any payback. Just promise me that if you are in the same situation, you will do the same thing.” I promise I will Dad. “Alright, everybody! Here we go!” I have gotten out of the copilot seat and gone back into the main section of the plane. My jumpmaster, Dan, is busy strapping us together. I look outside the window again; whoa, we are way up. I wonder if this is really a good idea. People start jumping out of the plane. Soon, there is nobody left in the plane except my small group: Me, Emily, Abby, our jump masters (we are all doing tandem jumps) and the photographers, one for each of us. Abby goes first. I watch as she moves to the door. Then suddenly she is gone, plummeting down towards the ground at a speed somewhere in the vicinity of terminal velocity. The fear in my stomach spreads to all corners and crevices of my body; All thoughts besides survival are expelled from my conscious. I know I will survive this too. The trick is to enjoy it! Statistically, sky diving is not that dangerous, not as dangerous as bungie jumping or scuba diving. Ironically, sky diving is pretty safe because of its inherent danger. Without strict safety guidelines, no one would do it. Deeper than my understanding of the numbers however, is the absolute certainty that God will not let me die now. Whoever is up there, it would be too tragic and ridiculous to let something awful happen to me after everything I had been through. It would make no sense to have been so close to death all those times just to die here. I do not fear death anymore. I have come to close to it too many times to not acknowledge that it‟s there, and it‟s going to happen to me one day. The only question is what I‟m going to fill my life with in the meantime. I could fill it with uninspiring work, make a lot of money and never spend it, and die suddenly, a very wealthy man who had done nothing with his life. Or I could accept that one day I will die, and that every day must be lived like it‟s the last. If that‟s the case, then money means nothing – it is just a means to an end, and collecting it is only important to make my life and the lives of my friends better. Fighting with people is almost always a pointless waste of time. Better to ignore them completely and fill my life, from dawn to dusk and beyond, every waking moment, with good people I care about. And every time I see a friend, I want them to come away thinking that I am a great friend, generous and appreciative, and a great guy all together. I have learned the difference between a friend and an acquaintance. It is this: In your darkest days, the people who stand up and help you even when it costs them a lot and it benefits them not at all, these are your friends. The friends who came to visit me in the hospital, who sat by my bed when I was sleeping or confused or wild and awake, who made the long journey out to the hospital to see me, not because they had to, but because they wanted to. Sarah, Bri, Kathy, Mike, and all of the folks from Stanford, students and professors, all who came to see me, and kept coming back when they didn‟t have to, they have shown me what it means to be a friend. When I think about how hard I made Emily‟s life that quarter, it still brings tears to my eyes. But she didn‟t run, she stepped up to the plate and did what she could to make sure that I made it out of Germany, back to New York, and eventually back to California, back to the old Tom. Friendship is not about pals around with you in the good times, it is about people who will show up when there is nothing to be gained personally, except the feeling that they are doing something right. When I got back to New York City and started up my chemotherapy, we called some of our old friends to let them know what had happened, told them how sick I was, and that we would love it if they could come and visit. Some people showed up, and others didn‟t. Those that didn‟t are no longer our friends. I do not hate them, it is senseless to waste time hating anything. I just don‟t care at all about them anymore. They are not friends, and in fact, never were. Some people claim they don‟t know how to deal with sick friends, and didn‟t know what to do in my case. I have no sympathy for that excuse. Any serious illness like mine is going to make the close 97/9 8

friends unhappy and afraid of saying the wrong thing, but something must be said, anything to help ease the patient‟s suffering, to let me feel the support. Running away from illness, feeling paralyzed by how my sickness made them feel, is like blaming the victim. With very few exceptions, no one can make anyone else change deeply rooted behavior. You cannot make these people care. You have to just take them for what they are: Acquaintances, entertainment. Definitely not a friend. Love the people who will love you back. Love your family. Don‟t waste time hating or trying to get people to change. Make yourself and your friends happy. There is now no one else left in the plane except me, my jumpmaster, the photographer, and the pilot. It is my turn to step to the plate, face down my fears, and fly. Once I have gone, there will be no turning back. This is the first step in my steep climb (well, actually a steep descent) to recreating my life with all I‟ve learned and all I‟ve been through. Life is scary, but it can also be tender and profoundly wonderful, even in a hospital. I step to the edge, and jump out. I am smiling the whole way down.

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