Part 4 (2/2)

”Well, I can't tell you that,” she said. ”I can only say that you can get back to surgery if you want, but you have to figure out what's most important to you.”

”If I had some sense of how much time I have left, it'd be easier. If I had two years, I'd write. If I had ten, I'd get back to surgery and science.”

”You know I can't give you a number.”

Yes, I knew. It was up to me, to quote her oft-repeated refrain, to find my values. Part of me felt this was a cop-out: okay, fine, I never gave out specific numbers to patients, either, but didn't I always have a sense of how the patient would do? How else did I make life-and-death decisions? Then I recalled the times I had been wrong: the time I had counseled a family to withdraw life support for their son, only for the parents to appear two years later, showing me a YouTube video of him playing piano, and delivering cupcakes in thanks for saving his life.

My oncology appointments were the most important of many new appointments with a variety of healthcare providers, but they weren't the only ones. At Lucy's insistence, we began seeing a couples therapist who specialized in cancer patients. Sitting in her windowless office, in side-by-side armchairs, Lucy and I detailed the ways in which our lives, present and future, had been fractured by my diagnosis, and the pain of knowing and not knowing the future, the difficulty in planning, the necessity of being there for each other. In truth, cancer had helped save our marriage.

”Well, you two are coping with this better than any couple I've seen,” the therapist said at the end of our first session. ”I'm not sure I have any advice for you.”

I laughed as we walked out-at least I was excelling at something again. The years of ministering to terminally ill patients had borne some fruit! I turned to Lucy, expecting to see a smile; instead, she was shaking her head.

”Don't you get it?” she said, taking my hand in hers. ”If we're the best at this, that means it doesn't get better than this.”

If the weight of mortality does not grow lighter, does it at least get more familiar?

Once I had been diagnosed with a terminal illness, I began to view the world through two perspectives; I was starting to see death as both doctor and patient. As a doctor, I knew not to declare ”Cancer is a battle I'm going to win!” or ask ”Why me?” (Answer: Why not me?) I knew a lot about medical care, complications, and treatment algorithms. I quickly learned from my oncologist and my own study that stage IV lung cancer today was a disease whose story might be changing, like AIDS in the late 1980s: still a rapidly fatal illness but with emerging therapies that were, for the first time, providing years of life.

While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn't help me as a patient. It didn't tell Lucy and me whether we should go ahead and have a child, or what it meant to nurture a new life while mine faded. Nor did it tell me whether to fight for my career, to reclaim the ambitions I had single-mindedly pursued for so long, but without the surety of the time to complete them.

Like my own patients, I had to face my mortality and try to understand what made my life worth living-and I needed Emma's help to do so. Torn between being a doctor and being a patient, delving into medical science and turning back to literature for answers, I struggled, while facing my own death, to rebuild my old life-or perhaps find a new one.

- The bulk of my week was spent not in cognitive therapy but in physical therapy. I had sent nearly every one of my patients to physical therapy. And now I found myself shocked at how difficult it was. As a doctor, you have a sense of what it's like to be sick, but until you've gone through it yourself, you don't really know. It's like falling in love or having a kid. You don't appreciate the mounds of paperwork that come along with it, or the little things. When you get an IV placed, for example, you can actually taste the salt when they start infusing it. They tell me that this happens to everybody, but even after eleven years in medicine, I had never known.

In physical therapy, I was not even lifting weights yet, just lifting my legs. This was exhausting and humiliating. My brain was fine, but I did not feel like myself. My body was frail and weak-the person who could run half marathons was a distant memory-and that, too, shapes your ident.i.ty. Racking back pain can mold an ident.i.ty; fatigue and nausea can, as well. Karen, my PT, asked me what my goals were. I picked two: riding my bike and going for a run. In the face of weakness, determination set in. Day after day I kept at it, and every tiny increase in strength broadened the possible worlds, the possible versions of me. I started adding reps, weights, and minutes to my workouts, pus.h.i.+ng myself to the point of vomiting. After two months, I could sit for thirty minutes without tiring. I could start going to dinner with friends again.

One afternoon, Lucy and I drove down to Caada Road, our favorite biking spot. (Usually we would bike there, pride forces me to add, but the hills were still too formidable for my lightweight frame.) I managed six wobbly miles. It was a far cry from the breezy, thirty-mile rides of the previous summer, but at least I could balance on two wheels.

Was this a victory or a defeat?

I began to look forward to my meetings with Emma. In her office, I felt like myself, like a self. Outside her office, I no longer knew who I was. Because I wasn't working, I didn't feel like myself, a neurosurgeon, a scientist-a young man, relatively speaking, with a bright future spread before him. Debilitated, at home, I feared I wasn't much of a husband for Lucy. I had pa.s.sed from the subject to the direct object of every sentence of my life. In fourteenth-century philosophy, the word patient simply meant ”the object of an action,” and I felt like one. As a doctor, I was an agent, a cause; as a patient, I was merely something to which things happened. But in Emma's office, Lucy and I could joke, trade doctor lingo, talk freely about our hopes and dreams, try to a.s.semble a plan to move forward. Two months in, Emma remained vague about any prognostication, and every statistic I cited she rebuffed with a reminder to focus on my values. Though I felt dissatisfied, at least I felt like somebody, a person, rather than a thing exemplifying the second law of thermodynamics (all order tends toward entropy, decay, etc.).

Flush in the face of mortality, many decisions became compressed, urgent and unreceding. Foremost among them for us: Should Lucy and I have a child? Even if our marriage had been strained toward the end of my residency, we had always remained very much in love. Our relations.h.i.+p was still deep in meaning, a shared and evolving vocabulary about what mattered. If human relationality formed the bedrock of meaning, it seemed to us that rearing children added another dimension to that meaning. It had been something we'd always wanted, and we were both impelled by the instinct to do it still, to add another chair to our family's table.

Both of us yearning to be parents, we each thought of the other. Lucy hoped I had years left, but understanding my prognosis, she felt that the choice-whether to spend my remaining time as a father-should be mine.

”What are you most afraid or sad about?” she asked me one night as we were lying in bed.

”Leaving you,” I told her.

I knew a child would bring joy to the whole family, and I couldn't bear to picture Lucy husbandless and childless after I died, but I was adamant that the decision ultimately be hers: she would likely have to raise the child on her own, after all, and to care for both of us as my illness progressed.

”Will having a newborn distract from the time we have together?” she asked. ”Don't you think saying goodbye to your child will make your death more painful?”

”Wouldn't it be great if it did?” I said. Lucy and I both felt that life wasn't about avoiding suffering.

Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I'd come to understand that the easiest death wasn't necessarily the best. We talked it over. Our families gave their blessing. We decided to have a child. We would carry on living, instead of dying.

Because of the medications I was on, a.s.sisted reproduction appeared to be the only route forward. So we visited a specialist at a reproductive endocrinology clinic in Palo Alto. She was efficient and professional, but her lack of experience dealing with terminally ill, as opposed to infertile, patients was obvious. She plowed through her spiel, eyes on her clipboard: ”How long have you been trying?”

”Well, we haven't yet.”

”Oh, right. Of course.”

Finally she asked, ”Given your, uh, situation, I a.s.sume you want to get pregnant fast?”

”Yes,” Lucy said. ”We'd like to start right away.”

”I'd suggest you begin with IVF, then,” she said.

When I mentioned that we'd rather minimize how many embryos were created and destroyed, she looked slightly confused. Most people who came here prized expedience above all. But I was determined to avoid the situation where, after I died, Lucy had responsibility for a half dozen embryos-the last remnants of our shared genomes, my last presence on this earth-stuck in a freezer somewhere, too painful to destroy, impossible to bring to full humanity: technological artifacts that no one knew how to relate to. But after several trials of intrauterine insemination, it was clear we needed a higher level of technology: we would need to create at least a few embryos in vitro and implant the healthiest. The others would die. Even in having children in this new life, death played its part.

- Six weeks after starting treatment, I was due for my first CT scan to measure the efficacy of the Tarceva. As I hopped out of the scanner, the CT tech looked at me. ”Well, Doc,” he offered, ”I'm not supposed to say this, but there's a computer back there if you want to take a look.” I loaded up the images on the viewer, typing in my own name.

The acne was a rea.s.suring sign. My strength had also improved, though I was still limited by back pain and fatigue. Sitting there, I reminded myself of what Emma had said: even a small amount of tumor growth, so long as it was small, would be considered a success. (My father, of course, had predicted that all the cancer would be gone. ”Your scan will be clear, Pubby!” he'd declared, using my family nickname.) I repeated to myself that even small growth was good news, took a breath, and clicked. The images materialized on the screen. My lungs, speckled with innumerable tumors before, were clear except for a one-centimeter nodule in the right upper lobe. I could make out my spine beginning to heal. There had been a clear, dramatic reduction in tumor burden.

Relief washed over me.

My cancer was stable.

When we met Emma the next day she still refused to talk prognosis, but she said, ”You're well enough that we can meet every six weeks now. Next time we meet, we can start to talk about what your life might be like.” I could feel the chaos of the past months receding, a sense of a new order settling in. My contracted sense of the future began to relax.

A local meeting of former Stanford neurosurgery graduates was happening that weekend, and I looked forward to the chance to reconnect with my former self. Yet being there merely heightened the surreal contrast of what my life was now. I was surrounded by success and possibility and ambition, by peers and seniors whose lives were running along a trajectory that was no longer mine, whose bodies could still tolerate standing for a grueling eight-hour surgery. I felt trapped inside a reversed Christmas carol: Victoria was opening the happy present-grants, job offers, publications-I should be sharing. My senior peers were living the future that was no longer mine: early career awards, promotions, new houses.

No one asked about my plans, which was a relief, since I had none. While I could now walk without a cane, a paralytic uncertainty loomed: Who would I be, going forward, and for how long? Invalid, scientist, teacher? Bioethicist? Neurosurgeon once again, as Emma had implied? Stay-at-home dad? Writer? Who could, or should, I be? As a doctor, I had had some sense of what patients with life-changing illnesses faced-and it was exactly these moments I had wanted to explore with them. Shouldn't terminal illness, then, be the perfect gift to that young man who had wanted to understand death? What better way to understand it than to live it? But I'd had no idea how hard it would be, how much terrain I would have to explore, map, settle. I'd always imagined the doctor's work as something like connecting two pieces of railroad track, allowing a smooth journey for the patient. I hadn't expected the prospect of facing my own mortality to be so disorienting, so dislocating. I thought back to my younger self, who might've wanted to ”forge in the smithy of my soul the uncreated conscience of my race”; looking into my own soul, I found the tools too brittle, the fire too weak, to forge even my own conscience.

Lost in a featureless wasteland of my own mortality, and finding no traction in the reams of scientific studies, intracellular molecular pathways, and endless curves of survival statistics, I began reading literature again: Solzhenitsyn's Cancer Ward, B. S. Johnson's The Unfortunates, Tolstoy's Ivan Ilyich, Nagel's Mind and Cosmos, Woolf, Kafka, Montaigne, Frost, Greville, memoirs of cancer patients-anything by anyone who had ever written about mortality. I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language. Hemingway described his process in similar terms: acquiring rich experiences, then retreating to cogitate and write about them. I needed words to go forward.

And so it was literature that brought me back to life during this time. The monolithic uncertainty of my future was deadening; everywhere I turned, the shadow of death obscured the meaning of any action. I remember the moment when my overwhelming unease yielded, when that seemingly impa.s.sable sea of uncertainty parted. I woke up in pain, facing another day-no project beyond breakfast seemed tenable. I can't go on, I thought, and immediately, its antiphon responded, completing Samuel Beckett's seven words, words I had learned long ago as an undergraduate: I'll go on. I got out of bed and took a step forward, repeating the phrase over and over: ”I can't go on. I'll go on.”

That morning, I made a decision: I would push myself to return to the OR. Why? Because I could. Because that's who I was. Because I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I'm dying, until I actually die, I am still living.

- Over the next six weeks, I altered my physical therapy program, focusing now on building strength specifically for operating: long hours of standing, micromanipulation of small objects, p.r.o.nation for placing pedicle screws.

Another CT scan followed. The tumor had shrunk slightly more. Going over the images with me, Emma said, ”I don't know how long you've got, but I will say this: the patient I saw just before you today has been on Tarceva for seven years without a problem. You've still got a ways to go before we're that comfortable with your cancer. But, looking at you, thinking about living ten years is not crazy. You might not make it, but it's not crazy.”

Here was the prognostication-no, not prognostication: justification. Justification of my decision to return to neurosurgery, to return to life. One part of me exulted at the prospect of ten years. Another part wished she'd said, ”Going back to being a neurosurgeon is crazy for you-pick something easier.” I was startled to realize that in spite of everything, the last few months had had one area of lightness: not having to bear the tremendous weight of the responsibility neurosurgery demanded-and part of me wanted to be excused from picking up the yoke again. Neurosurgery is really hard work, and no one would have faulted me for not going back. (People often ask if it is a calling, and my answer is always yes. You can't see it as a job, because if it's a job, it's one of the worst jobs there is.) A couple of my professors actively discouraged the idea: ”Shouldn't you be spending time with your family?” (”Shouldn't you?” I wondered. I was making the decision to do this work because this work, to me, was a sacred thing.) Lucy and I had just reached the top of the hill, the landmarks of Silicon Valley, buildings bearing the names of every biomedical and technological transformation of the last generation, unfolding below us. Eventually, though, the itch to hold a surgical drill again had become too compelling. Moral duty has weight, things that have weight have gravity, and so the duty to bear mortal responsibility pulled me back into the operating room. Lucy was fully supportive.

I called up the program director to tell him I was ready to return. He was thrilled. Victoria and I talked about how best to reintroduce me and get me back up to speed. I requested that a fellow resident be available to back me up at all times in case something went awry. Furthermore, I would do only one case per day. I wouldn't manage the patients outside the OR or be on call. We'd proceed conservatively. The OR schedule came out, and I was a.s.signed to a temporal lobectomy, one of my favorite operations. Commonly, epilepsy is caused by a misfiring hippocampus, which is located deep in the temporal lobe. Removing the hippocampus can cure the epilepsy, but the operation is complex, requiring gentle dissection of the hippocampus off the pia, the delicate transparent covering of the brain, right near the brain stem.

I spent the night prior poring through surgical textbooks, reviewing the anatomy and steps of the operation. I slept restlessly, seeing the angle of the head, the saw against the skull, the way the light reflects off the pia once the temporal lobe is removed. I got out of bed and put on a s.h.i.+rt and tie. (I had returned all my scrubs months ago, a.s.suming I'd never need them again.) I arrived at the hospital and changed into the familiar blue garb for the first time in eighteen weeks. I chatted with the patient to make sure there were no last-minute questions, then began the process of setting up the OR. The patient was intubated, the attending and I were scrubbed and ready to begin. I picked up the scalpel and incised the skin just above the ear, proceeding slowly, trying to make sure I forgot nothing and made no mistakes. With the electrocautery, I deepened the incision to the bone, then elevated the skin flap with hooks. Everything felt familiar, muscle memory kicking in. I took the drill and made three holes in the skull. The attending squirted water to keep the drill cool as I worked. Switching to the craniotome, a sideways-cutting drill bit, I connected the holes, freeing up a large piece of bone. With a crack, I pried it off. There lay the silvery dura. Happily, I hadn't damaged it with the drill, a common beginner's mistake. I used a sharp knife to open the dura without injuring the brain. Success again. I began to relax. I tacked back the dura with small st.i.tches to keep it out of the way of the main surgery. The brain gently pulsed and glistened. The huge Sylvian veins ran across the top of the temporal lobe, pristine. The familiar peach convolutions of the brain beckoned.

Suddenly, the edges of my vision dimmed. I put down my instruments and stepped back from the table. The blackness encroached farther as a feeling of lightness overcame me.

”Sorry, sir,” I told the attending, ”I'm feeling a little faint. I think I need to lie down. Jack, my junior resident, will finish the case.”

<script>