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Zipperhead
How the fight to save my life
revolutionized brain surgery
By Avi Yaron
with
New York Times bestselling author Janine Latus
Overview
I fly low on my Ducati Supersport 750 motorcycle, whooshing and weaving between cars, swooping onto the same exit I use daily. Today, though, the traffic is backed up ten deep. I can’t stop because there’s sand on the roadway and I can’t go around because the shoulder is closed for construction. There is no way out. Boom! I hit the back of a minivan and collapse to the ground and my beautiful bike skids sickeningly underneath.
The accident should be fatal, but instead it saves my life. It also helps save the lives of thousands of others.
I turn down offers of help, instead picking up my battered baby and hobbling home, where I hide it under its shiny cover so my mother won’t worry. I am bruised and hurt but have no broken bones. I am confident I will heal on my own, as I did with my Army injuries. I served five years as an officer in a covert Israeli Army intelligence unit before deciding that the James Bond lifestyle didn’t fit me long-term. I wanted to be an ordinary person. Ironically, I find myself reproducing my former insane pace in my new civilian life: studying electrical engineering full-time, working two jobs, allocating up to two or three hours for the unfortunate necessary act of sleep.
My head is aching nonstop, so I know I have a concussion, but I see no need to see a doctor. I dismiss every insistence that I go to a hospital. I ask my co-workers from the high tech company to work with me at my home. We set up a lab in my room so I can lie in bed while we finish developing an infrared wireless transmitter.
Finally, my father has had enough. I will see a doctor. He insists.
When the doctor reviews the CAT scan, he finds something wrong beyond the concussion. My brain has shifted off center. Something is pushing it aside. The doctor orders an MRI. There it is, deep in a nearly unreachable part of my brain, a tumor.
“You must have surgery right away or you will die,” one doctor says.
“You should have a biopsy,” says another.
“You have plenty of time, wait and see what happens,” says a third.
Thus the journey begins.
I don’t know which neurosurgeon to believe or what to do next. I have no clue about biology or anatomy, nor about neurosurgery. I feel like I have no one to trust and rely on, so I decide to take charge of my destiny. Doctors are outraged, telling me I’m irresponsible. My parents and friends are horrified. Everyone thinks I’m insane.
I do not understand brains or tumors but I will attack this as I do all problems: by learning everything I can. First, I have to find out whether the tumor is really malignant and how much time I have left. I bury myself in the medical library, neurology journals on one side, medical dictionary on the other. This is before the Internet, before television ads for pharmaceuticals. I have to order articles from abroad, wait forever for them to arrive. Night after night I spend in the library, forcing my brain to understand its own systems—electrical, chemical, mechanical—the great engineering of the human mind. Every step I think I take forward turns out to be two steps backward. The more I learn the more fascinated I am, as if my life isn’t at stake here. I’m still in complete disbelief and denial. I can’t accept the fact that I have a brain tumor and it’s going to kill me; I, who survived explosions and being under fire; who boast about never even having the flu.
To my horror, I learn that my tumor is considered deep-seated, that the only surgical option can change my personality, leave me paralyzed in half of my body, epileptic and with a damaged memory. Even performing a biopsy in this location is risky because it will pass through critical brain tissue.
I am afraid of any surgical procedure, but I need to better understand the metabolism of my tumor if I’m going to figure out what to do. I ask doctors more and more questions, push them to try experimental non-invasive tests that I’ve read about. Doctors look at me as if I fell from the moon. I know I’m not behaving as patients behave. I don’t do as I am told, don’t acquiesce to their authority.
Luckily, some doctors are curious enough to allow me to be a guinea pig. Together, we apply advanced nuclear and MRI techniques to try to learn more about the tumor without touching it. Eventually we conclude that the tumor is probably benign, slowly growing. It’s not going to kill me right away. Eventually, yes, if it is not removed, because it will block the foramen of Monroe – the channel that allows the flow of cerebro spinal fluid (“CSF”) in the brain – but not in the next week or month.
Desperate to avoid surgery, knowing now that I have some time, I do what I would have never believed about myself a few months ago: I reach out for alternative medicines. I try Chinese medicine, acupuncture, biofeedback, hypnosis, odd potions and rituals, determined to heal. I’m skeptical, and yet for the first time in my life I come across the idea that my body is something that should be taken into consideration; that it deserves to be well nourished and gently treated. It has never occurred to me that getting enough sleep might not be a complete waste of time, after all. I take my next periodical MRI, full of hope, but the tumor is still there. I don’t give up. I try bio-orgonomy and macrobiotics; I swallow mega doses of antioxidants and chew garlic by the heads, but in vain. Every three months the MRI leaves me shattered and defeated. Not only is the tumor still there, but worse, it’s getting bigger.
After eighteen months of intense research and disappointing trials, with the tumor continuing to grow stubbornly and doctors yelling at me, I finally understand I have no choice but to concede. I choose my doctor and my treatment: a revolutionary two-day procedure in New York City. The surgeon, Dr. Patrick Kelly of New York University Hospital, is pioneering a technique that blends CAT scan and magnetic resonance imaging, angiography and computer mapping technology. The first day he will drill holes into my skull, attach a halo, do a scan and plot the surgical course; the second day he will operate. I’m impressed by the surgeon, fascinated by his hi-tech approach. CNN has a crew there to record the saga, from the drilling of the holes to my first post-op victory lap days later. With a bit of ignorance and lots of ‘chutzpah’ I ask to participate in the surgery planning. Kelly is grand and agrees.
My recovery, though, is excruciating. The intra cranial pressure threatens to explode my head and leave me unconscious. The doctor wants to put in a shunt to drain the extra fluid from my head into my abdomen, but I refuse. It may save my life now but I know that it will come with a high price tag. Every time I have a headache I’ll have to rush to the hospital to see if the shunt is blocked and, if so, I’ll need another surgery. I’m not willing to compromise. I’m only twenty eight years old.
To keep the cranial pressures from killing me, I force myself to lie utterly still in a dark room, determined to slow my pulse and lower my blood pressure, and in the process reduce the pressure in my brain. I focus on stilling even my own breathing. I can’t bear light or sound. My mother has to sit silently in the dark. She tiptoes out and then back in, bringing soft food and whispering her worry that she will leave and then come back to find that I’m dead. For weeks I lie there, the pain fierce and unrelenting, my mother making sure her boy is still breathing.
After weeks I stand. I take a step. I take another. Day after day my mother walks with me in Bryant Park. At first it takes an hour to go thirty feet. I know every cobblestone, every sewer drain. Soon I push myself to go thirty one. My movement is slow and excruciating but each step is a victory.
Six months later, I return to Israel triumphant. I have conquered the tumor! By bucking doctors and turning down treatments and recommendations and choosing my own path, I have come through this invasion of my brain without seizures, paralysis, changes to my personality or to my intellect. I have won. Euphoric from my victory, I return to my crazy lifestyle, conveniently ignoring the lesson I’ve been taught. I buy an apartment. I renovate it by myself. I find love.
And yet.
A year into my new life, the tumor reappears. The tiniest of fragments left behind has been fed by a blood vessel and now it grows again, still benign but threatening to block the canal that allows cerebrospinal fluid to drain out of my brain. Deeply disappointed and defeated, I fly back to Dr. Kelly, expecting to set a date for a follow-up surgery.
“Avi, I don’t recommend that you have a surgery now. It’s too deep in your brain for me to get it all out.”
His words leave me shocked and puzzled. If Kelly, the magician surgeon, can’t do it, who can?
“I don’t have the technology,” he explains.
“But what do you need?” I ask, terrified and curious at the same time.
“What I need is a miniature three-dimensional camera, that could be inserted into the brain and provide the necessary view. That has not yet been invented. But there is good news: Your tumor is benign and is growing slowly. You can probably wait five years, no worry. You should hope that someone will invent it in time.”
Hope that someone will invent it in time?
Kelly’s words keep banging in my head all night. I dread this thought. What happens if no one will invent it? My life is stuck forever and I will be a Zipperhead for the rest of my life, clearing some tumor every few years, suffering immense pain and complications. All long-term plans can be trashed. I can’t build a future, get married, have kids, have a life.
I can’t stop thinking about it during the rest of my stay in NYC and the long flight back home. As the wheels touch the ground I come to a resolution. I’m not going to be a Zipperhead. I am not going to wait for someone else to invent it. I will do it myself.
Thus, the race begins.
I have no clue what I am getting myself into or what’s the right direction. But I am desperate enough and sufficiently naïve to believe that I can solve this. Fortunately, I find a venture capitalist who invests a small amount in my ‘revolutionary’ project, not really knowing yet what it is. Visionsense is born. My investor suggests, though, that I have my own tumor surgically removed. No one, he argues, will invest in a company whose founder and CEO carries a ticking bomb in his brain. It is a huge gamble but I understand why it must be done. Again I research, looking for the best surgeon for this task. This time it’s Dr. Perneczky in Mainz, Germany. Once more my skull is invaded; once more I suffer complications and need yet another operation.
But I survive to continue my mission. I go to medical conferences, consult with experts, spend days and nights testing ideas and trying to figure out why others have failed. I know that the typical stereoscopic (3D) vision system, like the OR microscope, uses two optical channels. I know that giants like Zeiss and Olympus have tried to reduce the size of their microscopes, but their solutions gave the doctors headaches and nausea.
Experts say it just cannot be done.
I think it can.
I speculate that the headaches are caused by the imperfect alignment of the two optical channels of the miniaturized microscope. Therefore, to create a miniature 3D camera you probably should rely on a single optical channel, or none. But how is that to be accomplished? I look around; I look at nature. I’m inspired by nature’s genius solution – the insect eye. An insect has a matrix of hundreds of miniature eyes, each looking at a very specific point in space. Altogether, though, the combined tiny images provide depth perception. I think I can use the same principle in medicine. I brainstorm, file patents, rent a space in a broken-down factory, and hire a physicist. Together we build a table-sized prototype of a single 3D camera. We use it to raise two million dollars, which allows us to purchase professional equipment and hire more engineers.
The development path is treacherous and we are hit by technological issues one after the other. Just when we feel that the technological challenges are almost behind us, we are hit by the 2002 financial crisis. Visionsense runs out of money and the Board of Directors demands that the company shut down. But I’m too stubborn and too devoted to give up. I fire most of the team to reduce expenses, and wear out three pairs of shoes in my frantic search for capital. Several private investors eventually agree to lend us some money. When this isn’t enough, I relocate with my family to the United States, turning Visionsense into an American company. The financial troubles, though, continue overseas. The downturn of 2008 finds us with an empty pocket, and the company hardly survives.
Meanwhile, on the personal side, there is good news. Follow-up MRIs show that my head is tumor-free and that I probably won’t need the invention for my own sake. But it doesn’t matter anymore. I’m already too absorbed, too drawn in to stop. I’m obliged to the surgeons who saved my life. I’m driven by the hundreds of tumor patients I’ve counseled and coached over the years, the ones who have poured their hearts out to me.
I also don’t know how to give up.
Eventually, with the progress of technology, obstinate persistence and some pure luck, Visionsense manages to finalize the development of the first miniature 3D camera. This gradually revolutionizes brain surgery. No longer do doctors have to lift off the top of the skull to see what they’re doing, nor do they have to function with flat, two-dimensional vision or guess at the edges and margins. With the miniature 3D camera they now can attack a tumor by entering the brain through the patient’s nose or a small slit above the eyebrow or behind the ear. Additional surgical disciplines, such as Spine and Ear, Nose and Throat are now switching to this solution. It’s adopted at Cornell, at Harvard, and at hospitals around the world. Thanks to the engineering marvel, thousands of people now come through surgery without paralysis, without seizures, without changes to their intellect or personality.
Today, 3D is ‘hot.’ It spreads fast, like a juicy rumor, penetrating more and more areas of life. We see it in cinema theatres, video games and home TV sets. Next are cell phones, laptops and web cams. Customers go wild about 3D applications and are willing to pay more to get them, and this trend will continue to rise dramatically over the next few years. The revolution, then, has started, and it’s here to stay.
Paradoxically, the medical field, which is in desperate need for depth vision most painfully and acutely, has been lagging behind all these years. A decade ago, only a few doctors had dared to dream about it. I’m grateful for my tumor, my change agent, as it forced me into this field, impelling me to bring about advanced technology and 3D vision solutions into medicine – where it’s far more than a cool gadget; where it saves lives.
I’m writing this book in the hope that my personal story will inspire those millions of people who are about to face a similar dreadful crisis. My own journey has been long and painful, to be sure, but a one well worth taking. It has forced me – unintentionally and unwillingly – to change; and it brought me back to a more meaningful and rewarding life where I can make a difference.
Chapter 17
I double check the oil and water level in my small Fiat Uno while waiting for mom to come down. Better not be stuck on the mountainous winding road to Jerusalem. Today we’re traveling together to Hadassah hospital, like in the old days before the surgery. This time is different, though. No worries, no concerns. We chat cheerfully the whole forty-minute drive from Tel-Aviv to Jerusalem. This is a proud moment for me, and I’m glad to see Prof. Rosen, eighteen months after the surgery, and to have the chance to show him how I’ve triumphed over this tumor, almost against all odds. In the back seat are the MRI films proving that my brain is tumor free. In my bag is the CNN tape that shows my surgery, mom and I hugging within days of Dr. Kelly having burrowed through my brain using a blend of his own high tech techniques and my suggestions, and here I am now, walking and talking and very nearly dancing.
We wind our way up the mountain to the hospital, searching as always for a parking space on the side of the road, a hospital so big, one of the best in the country, and still you have to park on the hillside and climb. Still, it is a proud moment that I can climb, after those weeks of one step and then another, the hours spent shuffling, nearly vomiting from pain, and now here I am, striding up the hill talking with mom. It is a day of great joy.
“Hello!” I say to his assistant, who works the desk outside Rosen’s office.
“Avi!” she says, and rushes from behind the desk to give me a hug. “You are well!”
”I am well,” I laugh, updating her about my surgery, my recovery, then asking about her children, her husband.
“I’ll let Prof. Rosen know you’re here,” she says, returning to her side of the desk and picking up the phone.
After a moment she smiles up at me.
“He says for you to bring in your films.”
I knock on Rosen’s door and step through, as I’ve done so many times before.
“Avi!” Rosen exclaims. We shake hands.
“My doctor wrote you a note,” I say.
I pull out the paper. On it is written, “I’m requesting your opinion of this MRI. I think everything is all right but Avi said something is wrong, so I would appreciate your input.”
As silly as it may look, I’m proud of this note, that one of the top neurosurgeons in the country is asking a top neuroradiologist which one is right, he or me.
Rosen pulls the MRI films from their folder and chunks them one at a time into the light box, squinting at each as he does.
“Give me some time here, please,” he says.
I know the drill. I am to return to the fluorescent-bulbed hallway and wait with mom. Twenty minutes, maybe, Rosen will go over the films, measuring, comparing, combining what he sees with what he knows from years of training and experience. I know what he will find. I’m sure he’ll compliment Dr. Kelly for the well paved tunnel through my left frontal lobe, all the way deep into the very middle of my brain. I seat down by mom to continue the conversation.
In the first visits I had been appalled by the other patients, sitting nearly knee-to-knee as they had in the narrow hallway waiting area. Old people, ill people. People with palsies and drooped faces and drool. I felt I did not belong here. I was young and healthy, I had to overcome this thing growing inside my head. And now I have.
Twenty minutes pass. Thirty. Still, we are talking happily and don’t really notice, although both of us now begin to shift uncomfortably in the hard chairs. An hour passes and still I’m not worried. I’ve triumphed and I wait now only to have Rosen confirm that there is the slightest of abnormalities in the films, enough to get me the handicapped parking pass I want so that I don’t have to spend so much of my time searching and searching for a spot, but other than that I know my way is finally clear.
The phone on the receptionist’s desk rings as it has dozens of times, but this time she motions to me.
“Prof. Rosen would like you to come in now,” she says.
“Thank you,” I say, and mom and I again knock on the closed door. We walk into the small white basement room with its conference table and its wall of light boxes, now glowing black and white and grey with films of my brain, the Swiss cheese holes and the bright white matter all so familiar to me, after spending days with them taped to the kitchen windows, measuring and comparing.
“How are you?” Rosen asks, his brow wrinkled.
“I am fine!” I say, my arms wide and proud. “But I wanted to share with you that I think there is something wrong with my MRI. Some small thing.”
“Yes,” Rosen says.
“I have the CNN video to show you, too.”
Rosen looks at me, at the films, at me.
“Let’s see that then,” he says. “There is a VCR upstairs.”
Together the three of us walk up the stairs and down the hall to yet another small room, this one with an eighteen-inch television with a VCR, unadorned white walls and hard chairs. Rosen folds his arms and watches as I push in the tape. My mom steps to the back of the room and waits quietly. She has seen this video before and understandably has no desire to re-live the experience.
“You see?” I say. “They came and they recorded. Isn’t this beautiful?”
“I can’t see it,” Rosen mumbles. “Rewind that part.”
I look at the screen then look at Rosen. I hit ‘rewind.’
“Stop it here.” Rosen leans in close to the screen for a long moment. “Okay, rewind it again.”
Over and over he has me stop and rewind, replay and start over.
“I don’t see it,” Rosen is mumbling. “The residual. It has to be here, but I don’t see it.”
I lean in closer. Did he say residual? I can hardly breathe. A piece of the tumor is still there? After all the pain, the silence and darkness and determination, a piece is still there? My heart pounds. There is no way I can go through this again. I cannot bear it.
I struggle to keep my cool, though. I will not let myself show fear or weakness, will not look surprised or unprepared. With great effort I collect myself and smile at Rosen as if my world has not crashed around me, as if I had already known. Yet inside I’m drowning, everything I have worked for is gone. I’m going down again into that hell, but this time I know what’s coming and that makes it unendurably worse.
“Let’s go talk about this in my office,” Rosen says, and I push the eject button. Together we walk back down the hall, back down the stairs, back to Rosen’s office. The only purpose of coming today was to get medical justification for a parking pass and instead my world has once again ended.
“What do you think I should do?” I ask dreadfully.
“I don’t know,” Rosen says. “Ask Kelly.”
There is no point in asking how fast it is growing. I’ve read all the articles and medical literature about neurocytoma. I know I have several years before the slow-growing tumor will shut down the duct that circulates cerebrospinal fluid in my brain. I have time and still everything in my world seems to collapse. The new apartment, the new romance, my job, the Graduate degree in electrical engineering I was just about to restart, all my hopes and dreams and plans. Everything I’ve done to rebuild my life is now canceled, deleted, worth nothing.
I thank Rosen and together with mom, white as the wall, walk out without a word. We, who can talk endlessly, say nothing on the long walk to the car or on the drive winding down the mountain.
“What are you thinking?” she eventually asks, awakening me from my deep thoughts. “What are you going to do?”
I try to maintain my poker face. I cannot show her my deep sense of shock. She worries too much as it is, and I hate to add mine to hers.
“I will call Kelly and he will probably operate again,” I say.
Inside my head is a hurricane of flailing disappointment. I drive mindlessly towards Tel-Aviv and drop off mom. She kisses me on cheek and cheek and forehead, her hand long on my face, her eyes on mine, this time tarrying more than usual.
At last she gets out so I can drive away, and only then I remember Michal and the trip. Two hours ago I was supposed to pick her up to head north together. Waiting for us there is a zimmer, a cabin, a sweet spot alone in the woods, just for the two of us, with a jacuzzi and a fireplace and breakfast on the deck overlooking the Galilee mountains; hiking during the day and romance at night. Or maybe romance during the day and during the night. We agreed to leave early to get ahead of the river of cars flowing north, the people heading home for the weekend or leaving their jobs in the city to vacations in the coolness of the mountains. But now I’m not only late but much worse, I’m totally not in the mood. This should have been our oasis, our time to let go of work and school and just be together. And now it will be punishment to laugh and pretend. Yet I’m not going to tell her until the end. I don’t want to ruin it for her. It’s ruined for me, there is no doubt about it, but I’ll give her at least this, this weekend of pleasure.
Somewhat ambivalent I pick up the cell phone and call her. She answers on the first ring.
“Where are you?” she says.
“I am sorry I am late,” I apologize, trying to sound casual. “Rosen was late.”
“I’ve waited two hours for you! I missed the graduates’ workshop and you didn’t even call!”
“I know, but there was no reception in the basement. I am sorry.”
“Then you should have gone outside.”
“I’m sorry, okay. I’ll be at your place in ten minutes.”
The drive up north is long and slow, stuck as we are now in the migratory traffic. We talk of quotidian things—her classes, my job, our mutual friends.
“Why were you late?” she asks.
I glance at her and then back at the road, weaving as always among the slower cars.
“I prefer not to talk about it now. I’ll tell you on the way back, okay?”
Michal looks at me. I can tell that she doesn’t like it, that she wants to know now, but instead she reaches across and holds my hand.
“Okay,” she says.
I press her hand, reassured of my decision not to ruin this weekend for her. On the way back I will tell her so she can break free and not go through this hell with me. I’m too fond of her to drag her through this punishment, this possibility that I will be crippled or have seizures, that my brain won’t be as it is, that I won’t be as I am.
There is a black curtain over my eyes, and yet I smile broadly as we pull up to our cabin in the woods. The owner has set out appetizers and wine and seems amused by our fresh love. We unpack our bags, Michal smiling and excited, me smiling and worried. The Jacuzzi and the candlelight and the hard cheese and the wine lead to dinner on the porch, our feet layered one on another under the table. I look into her eyes, I feed her slowly, a bite at a time. Her hands stroke my face, my thick black hair.
It is October. The sky is deep blue, the hills still green even as they fade to fall, their soft rolling a contrast to the peaks of the Galilee Mountains. The wind whistles and whispers in the oaks and the Israeli pistachio trees whose muscled branches tower over the nearby hills. Near the deck the prickly juniper sends its spicy scent into the night. Through the evening sky fly storks and pelicans, migrating to the Mediterranean, warblers and hawks. A woodpecker provides punctuation. The sky darkens through blue to indigo to black pierced with stars. The wind rises and Michal leans against me, my arms tight around her, my heart beating against her back.
Later still I lie motionless, my pulse racing, staring at the ceiling as I listen to Michal’s sleep-heavy breathing. What should I do now? I think. How can I arrange my new life to accommodate what will hopefully only be a few weeks of inconvenience? What will Kelly say? Should I do the surgery now or wait? I have time, I know, but still, to have the tumor once again up there, ticking, growing. Carefully I pull my arm from beneath Michal, lift the sheet and slide out of bed.
I open my Casio PDA and make a list of things to consider. ‘E-mail Kelly,’ I type. ‘Examine MRI, measure sizes, compare to previous, look at magnetization transfer features to better analyze it. Review all articles about neurocytoma, recurrent, residual, surgeries vs. radiation, new solutions developed in year and a half since last one. Search for additional neurocytoma experts who may have come up in the past eighteen months.’
Slowly I slide down the wall until I am sitting. My list continues. ‘What do I do now? Continue with graduate degree in electrical engineering? Already enrolled for winter. What about Mototech?’
When it’s nearing morning I hear Michal rolling over, probably reaching for me, but my side of the bed is cold. She lifts her head and looks at me sitting on the floor. ‘Even on vacation you can’t let go of your work,’ she teases me with a smile.
“What are you doing?” she asks.
“I woke up at six and couldn’t sleep because of all the things I need to do,” I say, standing up and going to her. My legs are stiff, my back achy from the hours crouched over the Casio. I rub my hand through her tousled hair and down her back and she stretches out and lets me, still drowsy. After half an hour we hear a knock. Breakfast is served.
There are pastries and homemade jams, tahini and goat cheese, salads and fresh dressing, artisan bread and fruit. We are alone but for the breeze in the trees, the cows in the field, the view of the mountains and the villages on other hills. I look at Michal and my chest clenches. Tomorrow I will tell her.
The day’s hike takes us up the Betzet trail, along the stream with its frogs and its fish, the water birds still as statues of themselves. We make cheerful talk with other hikers, holding hands and touching, always touching, handing our camera to strangers to get smiling photos in front of the giant oak trees, the Roman ruins. The weather is cool and the climb is steep. I watch Michal as she climbs confidently and sturdily. I ache, knowing that everything is over: my health, our relationship, my life.
Suddenly I stop, my grief cracking through my facade. She turns and I pull her into my arms, gripping her hard against my body. “You have no idea how much I love you, how important you are to me.”
“I love you, too,” she says against his chest.
“No, really,” I say. “I have never felt this way for anyone before. You are the love of my life.”
I hold her for a long moment, overwhelmed and embarrassed by the rawness of my emotions. I’m very near to telling her the truth. We kiss and the kissing turns to something more and then I’m pressing her against a rock by the side of the trail, a rock the size of a table, a bed, and there in the woods, with no one nearby, we meld yet again.
It is Saturday when we begin the drive back, hoping again to avoid the traffic. The driving is smooth, I’m speeding as always, my radar detector beeping as I’m easing back and then pressing again on the gas, for once not loving the thrill of driving, thinking as I am of what I have to tell.
We don’t hit a traffic jam until the last hour of the drive and I’m ready to burst with the news.
“Okay,” Michal says, acknowledging finally what has gone unsaid. “You promised to tell me something on the drive back, so now it’s the time.”
I take a deep breath. “You remember that I thought I saw something on my MRI?” I ask, noticing how Michal’s eyes grow big.
And then I pour everything, from the drive to the wait in the basement to the video to Rosen’s mumbling to the moment of truth.
“I have residual tumor,” I say, and Michal’s eyes fill.
“No!” she says. “What did Rosen say? What will you do?”
“Perhaps this is a good time to take a break,” I suggest.
I put on the blinker and pull off the highway and into the parking lot of a shopping center. Michal wipes at her tears, seeming embarrassed that someone might see her crying. On the second floor we find a cafe and I order coffee, Michal hot chocolate, plus a piece of cheesecake to share. Neither of us is hungry but we pick at it anyway. The people around us are laughing, drinking beer, out on dates, oblivious to our anguish.
“Will you do me a favor?” I ask.
“Of course,” she says.
“Don’t tell anyone. Not your co-workers, not your friends.”
“What do you mean don’t tell anyone? I can’t carry this around without talking about it! People want to help.”
“But if people know they will begin treating me like a cripple. They will not give me good projects at work, they will look at me with pity.”
“But, Avi,” she says. The conversation goes on for a long while.
“I promise,” she finally says. Then, the cafe nearly empty, our emotions drained, we return to the drive.
“Okay,” Michal says, “what do we do first? What is the next move?”
“Michal,” I say, “this doesn’t need to be a ‘we.’ It is okay for you to leave me. I understand.”
Michal looks at me and frowns. She shakes her head.
“Don’t be ridiculous. When will you contact Kelly?”
I sigh.
“Tomorrow I will go back to the med school library and look again for information. Surely there is something new since the first surgery.”
“Good,” she says, and sits back.
I drop her off at her apartment and drive home. While I search for a parking place I call mom.
“I had an amazing time, Mom,” I say, “but I couldn’t stop thinking about the tumor.”
“Did you tell her?”
“Of course I told her.”
“And?”
“And what?”
“How did she take it?”
“She should not have to go through this hell with me.”
“Oh, Avikush”, she sighs.
Yet Mom cannot stand the thought that her son might get a double blow. Early the next morning, when Michal is barely awake, Mom calls her.
“Will you stay with my boy?”
“Of course! Why wouldn’t I?”
“Thank you,” she says. There are tears in her voice.
Chapter 18
The flight from Tel Aviv to New York takes eleven hours but I can sleep through most of it. Such is the beauty of night flights. I’ll eat and then I’ll sleep and then I’ll wake up in my favorite city in the world. I look out the window but it’s night and I see only my own reflection.
Rosen’s news about the residual of the tumor growing nearly knocked me to my knees but now I realize it’s just a speed bump, a detour, a change in plans. I’ve gotten used to the idea of another surgery. So my first wasn’t perfect. I thought it was but it wasn’t. Luckily the highway Kelly laid down the first time is still there, clear as an interstate on the MRI, so this time my magician surgeon won’t have to plow through healthy brain tissue to get to the tumor. Recovery will no doubt be easier, and I won’t have to worry about seizures or paralysis this time, since the path is already there. I’ll go to Kelly, show him my MRI, we’ll schedule another procedure and maybe CNN will want to do a follow up, a second chapter. It won’t be fun but at least this time I’ll get rid of it once and for all. In the meantime I’ll see my cousins and my friends and enjoy the city I haven’t seen for a year.
I put on my ear plugs and eye cover.
In the morning I raise my window shade, but it’s still dark. In two hours we’ll land. It would be nice if Michal had come with me. We could shop and see some shows. My cousins haven’t even met her.
The smiling stewardess comes around with a warm cloth. I cover my face and breathe in its humidity. It smells antiseptic, like a hospital.
What a surprise this will be for them, after my terrible performance at the picnic last year. That day was possibly the most painful of this whole ordeal, my brain pressed by the high intracranial pressure, until I thought my head would burst. Even the memory is awful, between the pain and ruining everyone’s day, but now they’ll get to see me healthy, walking and talking. I should get them something for all they did for me.
Tonight I’ll get to see Yarden, my best friend in New York.
The plane drops below the clouds now and I can see New York City’s skyscrapers, their nighttime lights still on even though it is nearly dawn. Thank goodness I had such an excellent surgeon. My tumor had been deep in the middle of my brain, in the left lateral ventricle between the two lobes, clogging the foramen of Monroe and damming up my cerebral spinal fluid, creating pressure that would squeeze healthy brain tissue until I would have collapsed or had a seizure or something else awful. Other doctors would have taken the short route, through the corpus callosum, and left me half paralyzed or numb, or perhaps without my ability to think or with a changed personality, but Kelly had been bold. He’d snuck in through the left frontal lobe, a longer route, hoping to slip through the centers of linguistics and other higher functions that help me navigate through life. Most surgeons avoid it because it’s just too dangerous. They’d rather gamble on some level of physical disability than a major mental deficit. Kelly is brilliant, though, and his gamble worked for me.
This will be okay.
I feel confident and even happy as I watch the skyline of Manhattan take shape. When I land I’ll go out to Brooklyn and spend the day with my cousins. I sit back and close my eyes, smiling.
The next morning I wake up early. We had stayed out late but still, I’m on Tel Aviv time and eager to get started. I tuck the MRI slides under my arm and head across midtown to NYU Hospital. Kelly’s office has moved, though. It’s in a different tower and now on the sixth floor. I walk into the reception area and Debbie, Dr. Kelly’s PA, stands, grinning. We hug and kiss and laugh. It is like a school reunion as we talk about her daughter and my health and Kelly’s office move. The waiting room is full, though, and she is busy, so she asks me to sit and wait.
“Happily,” I say.
I sit and pick up a magazine. It is odd, though. Normally Kelly comes out as soon as he knows I’m here. I check my watch again. It’s been a good three quarters of an hour. When he does come out I stand, grinning, glad to see my old friend.
“Hello,” he says, “how are you?”
The question is less the start of warm small talk than a perfunctory check on a patient. He leads me not into his office, as had been our custom, but into an exam room, small and chilly, asking for my films before we’re fully through the door. I am puzzled. My way is to chat, to establish a connection, but this time he is all business. He switches on the light box and looks at the slides. I am standing next to him, watching his face.
“Ye, ye, ye, there’s the residual,” he says, nodding. He flips the light box off.
I’m shocked. To look so quickly and then to speak so bluntly. It’s as if he expected the residual, as if he knew he’d left a piece behind. I’m terribly disappointed; you’d think he would be, too, but no, there’s nothing. How can he be so business-as-usual? How come he’s nonchalant? It starts to dawn on me that there’s something more, something I hadn’t prepared for.
“I think this surgery will be easy because of the road you laid down,” I say. “Do you recommend I do it soon?”
“Avi, my friend. I don’t recommend that you have a surgery now or in the near future. Your tumor is growing slowly, so you should put it off as long as you can,” Kelly says. “It’s too deep in your brain for me to get it all, so I suggest you wait. You probably have four or five years. That way you can put the next surgery off longer.”
This surgery and then another and another? I feel it deep in my gut. Every five years opened and closed and the torture of recovery and then wait for the next time?
“Why can’t you get it all?” I ask, puzzled. If Kelly, the magician, says he can’t then who can?
“I don’t have the technology.”
“But what do you need?”
He looks at me.
“A miniaturized 3-D microscope.”
I hesitate for a second. I know from my research that neurosurgeons now look into patients’ heads with a microscope nearly the size of a man, and that’s a good ten inches away so that they have room to work. The incision has to be big, though, to allow the right viewing angles and light. I understand needing 3-D to get the depth perception to tell healthy tissue from tumor and to navigate through nerves and blood vessels only slightly thicker than a human hair, all of it important. And I get that they need it for the hand-eye coordination to pick through and pick apart such delicate tissues. But it’s never occurred to me that these huge microscopes aren’t doing the job.
“Okay, so how would a miniature microscope have helped in my case?”
“Your tumor’s so deep that in order to have proper stereoscopic vision using what we have now I would have had to make a big surgical opening and wider tract, ruining lots of healthy tissue. But then you would have been left with deficits, so I made a small incision. Working through such a small hole has real advantages, among them what you can see in yourself — walking and talking afterward — but it also has a price, including missing tiny pieces. It compromises not only my depth perception but also how much I can see and the brightness of the image. I removed all the tumor tissue I saw but might have left behind even a single cell, a couple of microns across.
“You know, Avi, my special technique involves a narrow tube that I look through with the microscope. But the microscope can only show you what’s in front. I had to carefully move the tube in your brain, to the right, to the left. Since the tumor was larger than the tube, I had to move it around to reach the entire tumor and make sure I hadn’t left any part behind. But it’s impossible to remove every single cell. We all hope that the tumor cells left behind will die of starvation, but in your unlucky case your residual cells managed to reconnect to some blood vessel — what we call ‘angiogenesis’ — and started multiplying. I can’t guarantee that this won’t happen in your next surgery.
“So for now I recommend that you wait four or five years, up to the point where you see symptoms. Hopefully in the meantime someone will invent what I need. Then you can come back and I’ll re-operate.”
There’s a long moment of silence while I try to absorb his words. Kelly and I have had many, many meetings. We spent hours together planning my first surgery, and now he’s leaving me in the hands of some unknown stranger?
I pull down my films and slide them into the envelope.
“Thank you,” I say.
I don’t say good-bye to Debbie, don’t look out at the view. I drag myself to the elevator, my life over. I just want to go back home. I step outside into the noise.
“Michal,” I say into the phone, “he doesn’t want to operate.”
“What?” she says. Just hearing her voice brings relief, even though it is late in Israel and she sounds sleepy.
“He says I should wait. That I am lucky it’s benign. That maybe someone will invent the technology he needs.”
“I don’t understand,” she says. “Start at the beginning.”
So I do. I tell her about Kelly’s brusqueness and how he didn’t seem surprised or disappointed by the residual. I tell her what he had told me about needing three dimensions to find the edges of a tumor and how doctors had traditionally taken off the top of the head to get a view but he had used a small hole to try to keep me as functional as possible. I use the analogy of a highway, and how to pave a wide road you have to knock down a lot of healthy bushes and trees, and how what Kelly had done was more like a walking path — less damage but also less room to see what’s going on — and how what he wants is a tiny 3D camera so he can make small incisions and still see what he’s doing. I talk and talk. When the traffic is loud I step inside. In and out I pace, trying to make sense of it for both of us.
“I will be a zipper head,” I tell her. “Every five years or so they’ll open me up and cut something out and zip me back shut. If I live to be an old man that will be ten surgeries, ten recoveries, ten trips through hell.”
I don’t tell her how hollow and disappointed and unbearable it feels to be out of control, to leave my destiny, my very life, in the hands of the some imaginary person somewhere who might invent something in time. It’s not a feeling I’ve ever felt.
“Are you mad at Kelly?” she asks.
“How can I be? He saved my life.”
“Yes, but are you angry that he left some of the tumor behind but then said he removed it all?”
“Disappointed, yes, but not angry.”
Three times she asks it, but it’s true, the man saved my life. I am not angry, just unlucky.
By the time we are done talking it is well into the night for Michal. I call my friends and cancel our plans to go out. The city has lost its charm. I don’t want the lights, I don’t want the noise. I don’t even want to walk, which is my favorite thing to do in the city. Instead I catch a cab back to my hotel.
All night I sit on my bed, thinking. I knew about residuals, knew other surgeons had them, even if they hardly ever admitted to it. You could look through the literature and find articles about people fixing residuals left behind by other surgeons, but not Kelly. Kelly is the best of the best. And besides, statistics have never applied to me. I have always been on top of things, breaking records, excelling at everything, but now this small stupid cell is telling me I’m just like everyone else. One microscopic cell is more disastrous to me than all the times I confronted and evaded death in the Army. For the first time in my life it hits me, devastatingly: I, Avi Yaron, am vulnerable. Before this I was invincible, immortal, a super man who could do anything, overcome anything. Now even the best surgeon in the world can’t fix me.
I try to sleep but it’s impossible.
Why did I put myself through all the anguish only to end up facing this? I’ve fought and persisted and endured, I’ve worked hard to collect the pieces of my life and start over from where it was interrupted. I’ve done pretty well during the last year, better even than everyone had expected. And now I have to go through all this over and over again? What’s the point?
As soon as day starts I walk through the city to the public library. I have to understand what Kelly means. In this age of technology why doesn’t this camera already exist? I’m devastated but I also can feel the familiar stir of curiosity. I don’t understand and I don’t like that feeling. I search through the library for hours, reading up on the basics of microscopes. I don’t even know where to begin. How come the big optics companies haven’t found a solution?
It is getting dark when I leave the library and begin the long walk up Fifth Avenue. I spent all day in search of the unknown and I came up with nothing, just pure frustration that this may be impossible. I no longer notice the people or the beautiful buildings. I don’t do my usual; a dinner in the West Village, walking with my friends for a great dessert in East Village. This is not the city I love. It’s an obstacle, a horrible place where my life as I know it has ended.
For three days I walk the city, waiting for my flight back home. Finally I board. This time, though, I can’t sleep. My life will never be my own again. It is owned by a stupid small cell, a piece of my body that betrayed me. Never again will I have control. I won’t be able to get married and have a family because I can’t rely on myself. I may die in one of the surgeries, or become crippled, or have my personality changed. I will never be able to plan ahead, never be a long-term responsible adult. I look out the window. I hadn’t considered getting married but now the idea of never being able to hurts. Here I have Michal and all I can offer her is someone whose head has to be opened and closed. I thought the days of living from MRI to MRI were over, but now it’s worse; it’s living from one surgery to the next. We won’t be wondering if I have a residual, we know. We’ll always be looking to see how much it’s grown, how much time has ticked away until another surgery and another long recovery.
During the night my thinking revs up. Why hasn’t anyone developed a miniature microscope? I know little about optics but this is a technological challenge, and I love technological challenges. For the entire flight I think about it. Zeiss, Olympus, Leica, the best optics companies in the world can’t develop it, yet I’m supposed to wager my life on someone somewhere doing something that can’t be done, all the while with this ticking bomb in my brain.
The hell with it. I’m going to take control. I don’t know how but I’m willing to die trying. I think of what Theodor Herzl said, “If you will it, it is no dream.” He was fighting against all odds to create a Jewish country and he didn’t succeed until after he died but still, he won and everyone in Israel cherishes him for that.
The plane lands and I work my way through baggage and customs and the throngs waiting for loved ones, the ultra orthodox and the secular, Arabs and Jews blending in a soup of sounds and smells. I break through the doors into the fall air and there is Michal, slim and beautiful, waiting to pull me into her arms.
“I’m going to solve this,” I say. “I have no idea how, but I will.”
Michal smiles.
“That’s my Avi,” she says.
Chapter summaries
Chapter 1—I am rushing between teaching at the university and my job at a communications firm. I am thinking about my own entrepreneurial company selling the motorcycle electronic ignitions I invented as I hit the open highway and twist open the throttle. Fifty, sixty, seventy miles per hour I push it, the engine not even needing a breath. I check to my right and swoop into that lane, around a car, around a van and back around to the left. Eighty. Ninety. I am flying at low altitudes, going a hundred now, my daily ten minutes of barreling bliss on the freeway. I glance right and slide onto my exit, the same one I’ve taken weekly for months. It is then that I have the motorcycle accident that saves my life.
Chapter 2—My bike and I limp home to my mom’s. For many days my head pounds with each step and I can barely go downstairs to the apartment’s kitchen but I know I will heal. I have always recovered from concussions before. My army service taught me that I can tolerate any pain short of death; I just have to have willpower. I do not go to the hospital, do not call a doctor. Instead my work team members turn my bedroom into a lab so we can continue our project. The University goes on strike, so I do not have to go to class. I buy a computer and modem and trade stocks in real-time. I have invested for a decade but now I get even more serious, gambling against trends. I do it as much for the challenge as for the money. I wrestle the wounded carcass of my motorcycle into my mother’s living room. It is beautiful, a piece of Italian sculpture that has been battered. Slowly I take it apart, pushing back the coffee table and rolling back the rug so I don’t stain my mother’s things.
The torture in my head doesn’t cease for a moment. Finally my father insists on seeing me, even though it will require that he come to my mother’s house. He half convinces, half demands that I see a doctor. I acquiesce. I get a CT. I get an MRI. The vast hemorrhage in my brain masks the image. The interpretation is vague.
Chapter 3—It is classic me. As a child I was perpetually experimenting with my chemistry and electronics sets, practicing setting off explosions and offering them as entertainment at class parties. I made and flew model airplanes and brought home snakes and lizards and birds, crickets and grasshoppers and guinea pigs, and always frogs, setting them up in shoe boxes and aquariums and cages in the family apartment, not caring how often they hopped free. My mother fed the wounded birds with a dropper, cleaned up after the rabbits, mended my torn clothes and washed out the stains. All animals came to me.
My father, an Israeli spy, disappeared for months at a time and then reappeared, dominating the household. For high school I was accepted into the top math and science program in Israel. For my senior project I built a small computer. The year was 1987.
Chapter 4—The University strike ends and I must return to classes and to teaching at the microprocessor lab a friend and I developed based on our years in the Army. My bike is still not functional, and I feel it wise to get an official okay before returning to my hectic life. It is unlike me to willingly go to a doctor, but I do it anyway. I choose a senior Neurosurgeon at Hadassah Hospital in Jerusalem. My mother comes with me. As usual I drive fast, and we talk even faster. We take my CT and MRI results to the doctor, who checks me over neurologically. He hits my knee and elbow with a mallet, looks in my eyes, asks questions… he sees the flaw on the MRI but also sees this young asymptomatic man. He does not say a word about what he’s found, instead inviting me back for a concillium—a council of experts—a few days away.
Two days later Mom and I drive again to Jerusalem. We present my case, then wait in the hallway while the doctors confer. Finally we’re called in. I’m told I have an astrocytoma—a brain tumor—and that it’s likely malignant. I will die without immediate surgery. I’m stunned but still I argue. I am young! I am healthy! No way am I about to die! Mom and I walk out in raging silence.
Chapter 5—I served in an elite unit in the Army, where I developed and implemented electronic systems, survived gunfire and explosions as I carried out secret missions, always bucking what I was told. I built what needed to be built, repaired what needed repairing, my hands and my eyes and my mind on the mission, my body battered and ignored, my head always pounding with pain. I was exposed to stress and radiation, sleeplessness and a lack of food. I fell thirty feet from a tower and broke my ankle, but I was in the midst of training and didn’t tell anyone, instead lacing my boot tight against the swelling and letting it serve as a cast. Only when I had graduated as an officer did I admit that I was hurt, and only then did doctors operate.
That toughness will be important now.
Chapter 6—I bury myself in the Tel-Aviv University medical school library. MedLine, the definitive collection of current medical research, is only available on CD, and it only provides abstracts. To get to it each night I must lie about my major, search MedLine for words I don’t understand, then wander the stacks looking for the right journals. Much of the time the journals are not there and I have to order the articles from U.S. and European libraries, waiting weeks for them to arrive by mail. I create my own dictionary of terms. I consult with other doctors, get second and third and fourth opinions. I have moments of triumph, of knowing I will overcome, but then failure. Time and again I think I begin to understand, only to discover later that I’ve taken the wrong path. I learn about other brain abnormalities, such as vascular malformations, in the hope that mine isn’t an astrocytoma —perhaps not even a tumor—but each time I find myself back to square zero.
After over a year of researching and pleading doctors to perform on me experimental tests hardly ever used before, I come to understand that the tumor is not an astrocytoma; it is a neurocytoma. It is a moment of transformation. Astrocytomas are gliomas and can be fatally malignant. Neurocytomas are benign but their location—deep in the center of the brain, usually threatening the structure that keeps brain fluid pressures in check—makes them nearly impossible to remove without leaving the patient half paralyzed or unable to speak or with profound personality changes. This is my tumor.
Chapter 7—I have never believed in spiritualism but I’m willing to do anything that will save me from a surgery. Skeptically, I throw myself into alternative medicine. I try Chinese medicine, searching New York City’s Chinatown for a rare mushroom. I try acupuncture and biofeedback, hypnosis and macrobiotics, determined to heal myself on my own. I study bio-orgonomy and slowly recognize my addiction to adrenaline and the damage it is doing to my body. Months of practicing eventually manage to kick in and start me along the path toward being more tuned to my body. My starting point, though, is so poor and the way to go so long, that two decades later I still find myself fighting my addiction, night after night forcing myself to go to sleep against my own will, against my nature.
With each alternative method I try my hopes rise almost to the level of belief, and with each periodical MRI they come down with a crash. Months pass but the tumor is still there, multiplying and growing.
Chapter 8—At the same time I research chemotherapy, radiation, surgery. I understand that I will have the best chances if I go to the United States or Europe, but my insurance requires that my Israeli neurosurgeon sign documents that he can’t operate on me. The neurosurgeon refuses to cooperate; he is eager to operate on this rare tumor. His answers about the outcome of similar surgeries seem evasive, almost dishonest, so I have no other choice but to find out by myself. I make a pass at a nurse and manage to get the names of former patients. I contact them. There is one afraid to hold his own baby for fear he’ll have a seizure and drop his son. There are others whose bodies are half paralyzed, some whose spouses speak of unspeakable personality changes. I will not allow this surgeon to touch me. Determined more than ever not to compromise, I confront him, and he furiously signs off.
I approach neuroradiologists and surgeons and experts of all stripes. I read everything I can, keeping track of which doctors are cited most often. After months of research and elimination of most candidates, I understand that the man for me may be Dr. Patrick Kelly of New York University. He is the worldwide pioneer of minimal invasive Neurosurgery, the first to use a computer to blend data from angio, CT and MRI for planning a less invasive surgical approach. Instead of opening up the whole skull, paving his way to the tumor through healthy brain tissue and all the while causing damage and complications, Kelly does the job through a surgical path that is only 20mm in diameter. He is also one of a few surgeons that have a considerable experience with my rare type of tumor, which comes down to the astonishingly small number of eight cases.
Chapter 9—I fly to New York to meet with Dr. Kelly, carrying my thick folders of articles plus copies of my own PET, CT and MRI scans. I have read so much that I can quote chapter and verse from Kelly’s work. But I insist on seeing his system as well. Kelly objects and then gives in. He takes me into a room. The computer is huge. We put on scrubs and Kelly takes me into another room. I am impressed, the simulation is so lifelike! I watch the computer, watch the masked faces of the doctors practicing there. How serious they are. And then it hits me; this is a live surgery. Under all of the draping there is a man. The brain I see pulsing on the screen is real.
The more I ask and see, the more I am convinced that this is the doctor for me. We schedule the surgery and I leave, impressed by Kelly but determined that the surgery will never happen; that with my willpower and the assistance of alternative medicine I will heal myself.
Chapter 10—My bio-orgonomy coach, a person of strength and insight, declares my tumor to be gone and I go in for my next three-month periodical MRI feeling joyous. This time I’m confident I’ve defeated the tumor! But the MRI shows it to be not only still there but growing, getting ever closer to blocking the foramen of Monroe—the channel that allows the flow of cerebro spinal fluid in the brain. The left ventricle is enlarged, indicating that the process of hydrocephalus has already started. It’s now just a matter of time—and I know no one can tell how much—before I will collapse and be rushed to the nearest hospital to be operated by the neurosurgeon I so dread. I slump. All my hopes are crushed. I must go for the operation. I call Dr. Kelly, my only acceptable option. He asks for permission to have a CNN crew document the surgery and my recuperation. It is part of a series on medical breakthroughs; they have chosen Kelly because of his innovative technique. I hesitate, then agree, and the date is set: May first.
Till then, though, I have a few long weeks to pass. I’ve read all Kelly’s articles to know there’s a twenty-five or thirty percent chance I’ll come out with a major disability. In a matter of days my life as I know it might be over. I decide to join a friend who is traveling to South Africa. This may be my last chance to travel. While there, I enter an unlocked cage of a young lion. The people watching are terrified. The animal and I wrestle and play and I emerge bitten and bruised but exhilarated. Everyone thinks I’m insane. I feel as I’ve nothing to lose. In a week or two I might be dead or crippled anyway.
Chapter 11—My mother and I fly to New York for the surgery. We meet with the CNN crew, doing our best to smile in front of the camera despite the tormenting turbulence inside. The first day of surgery I have holes drilled into my skull and a framework attached. Doctors thread an angiocatheter in my groin to map the blood vessels in my brain. They run a CT scan and an MRI. The images will be used by Kelly to plan his surgical course. Kelly is a technological innovator, the father of navigation within the brain. Still, I ask to join him and plan the surgery together. It is my brain, after all. The pain still pounding in my head, looking like a member of the Taliban as thick bandages envelope my drilled skull, I sit down with Kelly to choose the surgical path deep into my brain. It won’t be the shortest, but what’s more important, it will bypasses the corpus callosum—the same area that if damaged will cause epilepsy and hemiparesis. For two hours we work on the computer together. Finally we shake hands. We have agreed on the plan of action.
Chapter 12—The second day of surgery Dr. Kelly threads his way through my left temporal lobe, picking his way along the course we worked out, and piece by piece removes the tumor. After eight hours of surgery he announces to my mother and to CNN that he got all of it. I cannot move my arms. It’s a feeling so horrible I scream silently. I cannot even feed myself, so my mother takes pleasure in feeding her baby again. The video of our first hug airs across the United States. Kelly tells me in front of CNN that he had adopted three of my suggestions and they had improved the surgery.
Chapter 13—I take a victory lap around the department, leashed to my IV pole by tubes for fluids in and fluids out. I am released to my mother’s care in an apartment across the street. I rest and get restless. Cousins from Brooklyn invite us to a picnic. On the ride there I begin to feel pounding pain. I hide it so as not to ruin the day. Finally I give in. My head is exploding. My mother takes me back to the hospital. The intra-cranial pressure is so high that, according to medical literature, I should be unconscious by now. Doctors puncture my spine to reduce the CSF pressure, and only then do I faint. They call for Dr. Kelly, who wants to install a shunt to drain the fluid to my abdomen. The pain is excruciating, but I refuse. I’ve read enough about shunts to know that I don’t want one; that it will bring more uncertainty and surgeries down the road. I believe that if I rest completely and bring my pulse down, the pressure in my brain will abate, too. Kelly argues. I insist. Eventually, he lets me go against medical advice, on the condition that I check in every week for a CT scan to make sure things aren’t getting worse.
I crawl back to the hotel across the street and lie in the dark for pounding weeks, my mother spoon feeding me and mopping my face with cool cloths. Tortuously slowly my idea works and the pressure drops. I begin again the slow walking, week after week, one and then two steps at a time. Most of my time is spent sleeping and watching television. A chewing gum commercial comes on. The gum is so good that someone snatches it from a girl’s hand and I turn my head away so my mother can’t see my tears. The surgery has made me a crybaby. My personality is changed. I am embarrassed. I am terrified.
Chapter 14—Gradually, my strength and personality return. My mother flies back to Israel and I move into an apartment, determined to spend time enjoying New York. I date but I won’t sleep with anyone out of fear of what an increase in heart rate will do to my brain. I walk everywhere, from the upper west side to the south ferry park. I have coffee and lunch and dinner with friends. I shop. I pull a practical joke on old friends visiting from Israel. We meet at an upscale midtown restaurant as I pretend I am paralyzed on one side of my body. I think it’s hilarious; they don’t. They will never forgive me for ruining their dinner.
Chapter 15—I return to Israel feeling triumphant. I buy a small apartment and renovate it myself. It will be my piece of New York bachelorhood in Tel Aviv. I go in for follow-up tests every three months. The first is clear and I celebrate and then get on with my life. I continue to build my apartment, try to re-establish my motorcycle ignition company and work part-time for Eldat. The second test looms. There is no way I can avoid being anxious. The results are again clear, and I relax. Three months later I go through it again; the anxiety, the test, the relief.
A friend insists I meet a friend of hers, a woman named Michal. I am offended. I do not need to be set up. The friend arranges it anyway. I am surly. The next day I call to ask her out for coffee so I can apologize. The date lasts the entire day.
Chapter 16—There is no parking around my apartment. Some days it takes half an hour to find a spot and even then it can be blocks away. I decide that since I have had no advantage from my enormous trauma, no compensation from social security, I at least deserve a handicapped parking pass. I tape my most recent MRI to the kitchen window and spend hours examining and measuring, looking for the slightest of differences. There is something not quite right, I can tell. A tiny change in one of the walls between lobes. I bring it up with my doctor, who sees nothing but who agrees to send the MRI along to Professor Rosen, one of the top neuroradiologists in the country. Meanwhile Michal and I plan our first vacation together.
Chapter 17—My mother and I travel to talk with Prof. Rosen as Michal prepares for our romantic get-away. Rosen tells me that I have a residual, a tiny portion of the tumor left behind and now growing. My life is over. (See sample chapter)
Chapter 18—I fly back to Kelly, who says the words that change everything. The tumor is too deep in the brain and the technology does not exist to remove the whole tumor. I’m lucky, though, he tells me; I probably have five years before the tumor will block the fluid channel that drains my brain. Perhaps someone will invent the technology in time. The wind is knocked out of me. Here I am, young and happy and in love and now I have five years to live. The feeling is beyond horrible. I have to tell Michal. I will not punish her by asking her to stay with someone who will become disabled, who will die young. (See sample chapter)
Chapter 19—At first my looming death overshadows everything. We must not go out to eat, we must not travel. We live MRI to MRI. Over the course of a year, though, real life returns, Kelly’s words always in the back of my head. I start a master’s degree program in management at Boston University. In one class I am required to create a marketing plan for a product, so I decide to do mine on Kelly’s dream product, a miniature stereoscopic camera. It is almost a joke, but in my research I discover that the potential for such a product extends far beyond neurosurgery. That the forecasted market for surgical microscopes and cameras is $4 billion. Excited, I immediately call Michal. “This is a start up!” I declare.
Chapters 20-21—Energized by this new promising piece of information, I dive into research about how the brain perceives images, what manipulations and computations it performs in order to convert images from each eye into the stereoscopic vision we think of as sight. What is it that Zeiss and Olympus are missing? I try to develop my own theory. I know from my studies that to acquire stereoscopic vision you need two eyes, two cameras. I also know that every camera and lens has some type of distortion and aberration; that even the most precise manufacturer cannot create lens that are perfectly identical. With a monocular camera, it’s not an issue. Both eyes see through the same distortions so the brain can easily cope and adjust. However, when using two separate cameras the difference becomes intolerable. To further complicate things, if one lens points slightly up or down or if there is any difference in the optical magnification, the brain will really suffer. I speculate that this is why doctors are getting nausea and headaches; I think that this is the problem I need to solve.
Our apartment is stacked with files. I fly to medical conferences, talk with doctors and physicists, brainstorm with optical experts. I hold meetings in a coffee shop, print out business cards on our home printer. Everyone says what I’m trying to solve is impossible, but what I hear is not ‘impossible’ but ‘challenge,’ and I love a challenge. I land my first investors: $100,000. I match that with a loan and pour in my life savings.
The time bomb in my brain is ticking.
Chapter 22—There is a problem, though. Potential investors convince me that no additional money will come in as long as I have a tumor growing in my brain, so I again begin seeking the doctor with the most up-to-date technique for my specific case. I fly to Germany with a neurosurgeon who introduces me around a neuroscience conference. I ask everyone about stereoscopic endoscopes. No one has a clue. I meet Dr. Axel Perneczky, the German pioneer neurosurgeon who developed the endoscope-assisted microsurgery approach. Perneczky talks to me with respect until he learns I’m not a doctor, and then he becomes contemptuous.
Chapter 23—As rude as he was, I still admire Perneczky’s minimally invasive approach and I decide to let him operate. I welcome his philosophy of no anti-seizure medications, no antibiotics, no shaved head, no big scar. This time it’s going to be relatively simple, he assures me, as he can follow the ’highway’ laid down by Kelly to remove the last of the tumor. I request that he also dissect the septum pellucidum—the thin membrane that separates the lateral ventricles of my brain—turning what were two small compartments into one large one. I ask for it because I think that’s where the tumor is rooted. But Perneczky isn’t Kelly. He is so furious about my daring to intervene with his professional discretion that he almost kicks me out of his room. Only after the surgery I learn that he has done as I requested.
Chapter 24—My surgery seems a success but the complications almost kill me. There is high fever, there is infection. After two weeks of severe pain the doctor rushes me in for another surgery, this one unexplained. Gone is my hair. I am pumped full of antibiotics and anti-seizure medications. I survive but only after more pain. All this time, I lie in the hospital ward dispensing advice to the parents of children with brain abnormalities. The medical staff there treats the parents dismissively, so they turn to me for help and hope. I explain what the doctors mean when they call a tumor “good” and “bad.” I translate medical terms and diagnoses, elaborate on treatments and possible outcomes. My mother feeds teenage patients who cannot control their arms yet. Michal sleeps in my bed, and sometimes, when the pain is too harsh, on the floor by my bedside. After one month we finally head home.
Chapter 25—Home in Israel, we wake the next morning to find that my pillow is wet. Michal notices that the surgical wound in my head is oozing fluid. We buy a bandage and disinfectant for the leaking spot in my head, but it doesn’t stop. I call Dr. Stern, a top neurosurgeon I have questioned often about experimental options and who loves my idea for a miniature 3D camera. Stern is now enjoying his day-off leisurely breakfast at a popular café. He tells me to come down so he can take a look. “You have cerebrospinal fluid leaking out of your head. You need an operation.” I refuse, but eventually agree, on the condition that Stern be the one to operate and that it be done under local anesthesia so we can communicate during the surgery. I also can’t stand side effects of a full anesthesia again. He writes a referral note on the coffee shop napkin. “Go to the hospital now,” Stern says. “I have a wedding to attend and then I will be there to operate on you.” The procedure is clean and thorough, but I end up being hospitalized for two weeks, this time due to meningitis I developed earlier in Germany.
Chapter 26—When I have healed I dive back into creating Visionsense. I read, I attend more conferences, I spend hours and days drinking espresso with experts. It hits me that perhaps the answer isn’t in finding a way to refine the optics; if that were the problem Zeiss and Olympus would have solved it by now. Perhaps the answer needs to come from an entirely different technology, a revolution like the invention of digital printers, Xerox copiers or cell phones. The more I think about it, the more I realize the solution should be based on a single sensor. This will eliminate any difference in distortions or aberrations or vertical shift. The two channels should be weaved into one. In professional terms it’s called multiplexing. It works for electrons: stereo audio is transmitted on a single channel; I’ll make it work for photons!
I know this works brilliantly in nature: insects achieve 3-D vision via one eye. They have a compound eye, built as a matrix of hundreds of miniature eyes. Though each miniature eye is looking at a very specific spot, altogether the compound matrix provides depth perception. I would like to mimic the same principle, although I have little idea how. After months of further brainstorming with friends and experts, the single sensor concept is born. I file Visionsense’s first patent.
Chapter 27-28—One of my investors offers me space in a run-down factory and I take it. We called it The Jiffa, an Arabic word that translates into something akin to the filthy water left in a mop bucket. Michal and I clean and fix and improvise. I hire a physicist, an assistant.
Our goal is to build a feasibility prototype that can be presented to potential investors, but there is a challenge: Insects have up to eight compound eyes to view the whole surrounding, yet when it comes to neurosurgery, there’s no room for that. Brain surgery demands miniature solutions to reduce brain trauma and complications. We have to find a way to manage somehow with only one compound matrix. After months of lab experiments we finally come up with a solution: we’ll combine the single sensor approach with a mammal two-pupil approach. Instead of having one opening, this camera will have two, just like human eyes. If our calculations are correct, this should improve the sharpness and depth of field of the picture. I file a few more patents and a table-sized feasibility prototype is built.
Until there is real money I don’t take a salary; we live solely on Michal’s income for eight months. We decide to get married, but instead of wedding presents we ask for money for Visionsense. The wedding money holds the company over for another couple of months.
Chapter 29—For nearly a year I meet and give demonstrations to skeptical investors. Most don’t believe the idea is possible, they can’t grasp the concept, they are not sure a market for such a product even exists. Surgeons are succeeding now, they say, with their big operating microscopes. Yes, patients limp and slur and forget their own names afterward, but investors are not convinced that our solution will make a good business. These are the happy days of the dot com bubble. Investors are looking for fast and easy exits. AOL buys ICQ—an Israeli startup with no revenues—for $400M. Another buys an optical communication startup for a few billions. They say medical technology is too difficult to develop. Most of them don’t have the patience.
Luckily, some do. Visionsense attracts nearly $2 million in venture capital, but only after I promise thirty percent more in ownership stock if we don’t get FDA clearance within eighteen months. The clock is again ticking.
Chapter 30—We hire more people, move into a bigger and nicer space. We try to develop a small camera, based on our patents. There are small triumphs and crushing failures. Throughout it all I am on the phone, answering questions, guiding, coaching, linking patients and doctors and researchers, taking calls during rare family dinners, my phone and my laptop always in hand. Occasionally, people seeking my help touch something deep inside me; their fear, uncertainty and dooming future troubles me for days. I don’t know how surgeons do it, detaching themselves from the patients they treat, but I just can’t. When it comes to children, I oftentimes find myself teary over the phone.
Chapter 31—I manage to raise $8 million in December 2000, at the cusp of the stock market crash. I think it’s okay because we now have enough to solve the last technological hurdles and begin manufacturing and sales. I am wrong. The invention is too futuristic for manufacturers and they can’t seem to produce it reliably and repeatedly. My head of research throws down his tools, disgusted; it cannot be done. I fire him and become my own research director. I hire more people and we spend six intensive months creating the product.
Chapter 31—Now we need to raise a good $20 million more to support a sales force in the U.S. and distributors worldwide. The financial market has tanked, though, and there is no money out there. The leading VC & biggest share holder in Visionsense, insists we shut the business down. They’ve already closed several companies in their portfolio; we’ll just be another. But I won’t hear of it.
I release two-thirds of my team. This is more painful than I ever imagined. These aren’t just employees, they are friends. They have families to support, mortgages to pay, and I know I’m releasing them to a job-less market. The inner struggle keeps me up at nights, but I understand it should be done. I cut salaries and budgets and office expenses, shut down anything that’s not essential to survival. Over the next two years, I spend most of my time chasing investors. Again they don’t see the market, the profit potential. I still do. Visionsense goes through a bridge loan, and then another one. These allow us to keep going. I’m so desperate, that half-jokingly I tell Michal I’ll even take money from the Russian mafia.
Chapter 33—Over the course of the next couple of years I spend half of my time in the U.S., chasing investors and trying to convince companies to license the technology. When in Israel I oftentimes stay at the office till midnight, and when finally home I’m on the phone. My family and I don’t live at the same time zone. With two little ones, Michal tries to understand, but it still pisses her off. She complains she has become a single mom. Worse, that our eighteen-month-old son doesn’t recognize me as his dad; he thinks I’m a nice uncle coming to visit from time to time.
Chapter 34—Things in Visionsense don’t go smoothly either. With a tiny budget and a limited staff, we build a smaller model, based on an off-the-shelf Sony sensor. However, now we face a new problem: to see the picture of our 3D camera you need a 3D screen, but there just aren’t such screens that are good enough. They are all too big, heavy and expensive, and their pictures are dim. When I conceptualized Visionsense I assumed that by the time we developed the camera, 3D displays would have significantly improved. That assumption is becoming painful now. We also need more money for manufacturing but investors again balk. I still believe 3D is the future, but I now realize that the invention is ahead of its time. We just have to hold on.
Chapter 35—The real money is in the U.S., so in the summer of 2004 Michal and I decide to relocate, hoping to raise capital for Visionsense. We rent a house in Tenafly, New Jersey, close to New York City. Even before our boxes arrive from overseas, I’m again on a plane. I travel back and forth between the U.S. and Israel, trying to raise money at one end while working with the research and development team at the other end. To keep expenses low, I’m not taking any salary. Life in the U.S. is expensive, though, and we find ourselves burning through all our personal savings. When the next rent payment is due, we’re embarrassed to find that we have no money left to cover it. Michal calls her dad to ask for a loan.
After several uncertain months, I manage to close a financial round with U.S. investors, who dictate a humiliating devaluation for Visionsense and a company flip to become an American company.
Chapter 36—With the new funding, Visionsense manufactures the next generation camera chip. It’s based on the theoretical research performed during the prior years, when we had no budget to manufacture but plenty of time to optimize and tweak the design. The new model is not only much smaller and cheaper than its older sibling, it provides a better image quality as well. We also apply a flashing LED, a solution that is unheard of in the operating room, where all surgical cameras use xenon bulbs for light. The lower energy consumption also lays the infrastructure for a completely wireless camera in the future. As soon as surgeons start using it, they have surprisingly good news for us. Apparently, without intending or planning so, our camera carries an unanticipated advantage: thanks to the cold LED light, no longer do surgeons need to be cautious about burning patient tissue and sheaths—a continuous concern with the warm xenon light.
On the software side, we manage to grab one of the leading experts in missile algorithm development. Lean and on a tight budget as we are, we cannot offer him a competitive compensation, so we tempt him by the idea that his weaponry-based knowledge will be now used to save lives. For almost two years, he sweats to improve image quality further— reducing noise, enriching colors and enhancing resolution.
Chapter 37—The winter of 2006 seems colder and longer than ever. It’s already April and snow is still covering the ground. Michal and I cannot take it anymore. We miss the sun, the outdoors. I fly non-stop. When people ask me where I live, I answer only half jokingly I live in United Airlines. We figure out it doesn’t matter where I’m located, as long as it’s near a hub. With me spend half of my time in the West Coast as it is, we decide to relocate to Palo Alto, for the warmth of California and the technological opportunities of the Silicon Valley.
Chapter 38—Once the image seems good enough, we pack the system and name it “COW”—as it’s a Cart On Wheels. We try it clinically, first on cadavers, then on pigs. Now we can barely wait for surgeons to confirm that the system is ready to move on to be tried on living human beings. When the day eventually comes, it’s hard to say what’s more joyous: reaching such a key milestone or the mere relief of being spared the awful smell of cadaver and pig labs. We drag our COW from Cornell to Stanford, from North Carolina to Phoenix, listening to surgeons’ feedback and continuously improving whatever is needed.
Chapter 39—In 2009 the era of 3D TV finally starts, only ten nerve-racking years later than I expected. Without any sentiments, we get rid of our dim and back-killing CRTs and switch to the new bright flat 3D LCDs. It’s such a happy day that our VP of Sales festively throws one of the old CRTs into the river. Now that the system seems to work well enough, we engage design experts that give our dully improvised box a makeover. Our idea is to create a pleasing experience that doesn’t end with 3D vision but extends to appearance and user interface, too. With its chic curves and off-white color, the new system looks more like a giant ipad than a medical device. Surgeons and nurses are now spoiled by a fully digital and automatic system. The only button they need to push is the on/off. No more manual calibrations, good-bye external light sources, recording devices and cassettes.
Chapter 40—It has taken ten long years, numerous sleepless nights, lots of white hair, and tens of millions of dollars to launch the system, but eventually the day comes. I stand on stage before dozens of doctors at Cornell University, all of them wearing 3D glasses. The leading Neurosurgeon begins the demonstration and I hear their exclamations, the building murmur of conversation as he uses Visionsense system to take them on a 3D tour of the brain. No one has a headache, no one has nausea. The picture is clean and clear and the applause is huge. The invention has come too late for me, but come it has, and it will save hundreds of thousands from the pain and potential debilitation that I endured and saw in my fellow patients.
This is a moment of sheer pleasure and satisfaction, even though I know there will be many more hurdles to endure—there will be technological challenges to overcome, medical professionals and sales force to train, competitive markets to penetrate, tough deals to negotiate and God knows how many more rounds of funding to raise. But unlike the uncertainties and turbulences of the past years, for the first time I feel confident that Visionsense has reached a point of no return. Whatever happens, I know deep inside that my dream has come true; that hundreds of thousands of people will now be able to hope, heal, think and walk free.
Afterward—Since then, the Visionsense camera system has been adopted by hospitals all over the world and has been used in thousands of surgeries—of the brain, spine, ear, nose and throat. It is now paving its ways to other clinical specialties.
I’m finally slowing down the crazy pace. No longer do I want to be the Billionaire, the top executive of a multi-national company. Everything I’ve gone through—betrayed by my own body, repeatedly refused and rejected by investors, forced to lay off co-workers and friends, defeated by science and pressed by finances—these experiences have finally worked to transform me. I’m humbled now. I don’t try to be an omnipotent James Bond any longer. I don’t wish to be addicted to adrenaline, to push my body beyond what it should be able to withstand. It has taken me many years and numerous punches on the head—though considering my nature there is still a long way to go. Yet I’m now grateful for my tumor, for starting me on this most rewarding journey.