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, assisted 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 assume 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 reassuring 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 impassable 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, pronation 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 neuro
surgery 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 assigned 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 shirt and tie. (I had returned all my scrubs months ago, assuming 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 stitches 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.”
Jack arrived quickly, and I excused myself. I sipped some orange juice in the lounge, lying on the couch. After twenty minutes, I began to feel better. “Neurocardiogenic syncope,” I whispered to myself. The autonomic nervous system briefly shutting down the heart. Or, as it’s more commonly known, a case of the nerves. A rookie problem. This was not how I’d envisioned my return to the OR. I went to the locker room, threw my dirty scrubs in the laundry, and put on my civilian clothes. On the way out, I grabbed a stack of clean scrubs. Tomorrow, I told myself, would be a better day.
It was. Every day, each case felt familiar but moved a little more slowly. On day three, I was removing a degenerated disc from a patient’s spine. I stared at the bulging disc, not remembering my exact move. The fellow supervising me suggested taking small bites with a rongeur.
“Yeah, I know that’s how it’s usually done,” I mumbled, “but there’s another way…”
I nibbled away for twenty minutes, my brain searching for the more elegant way I had learned to do this. At the next spinal level, it came back to me in a flash.
“Cobb instrument!” I called out. “Mallet. Kerrison.”
I had the whole disc removed in thirty seconds. “That’s how I do this,” I said.
Over the next couple of weeks, my strength continued to improve, as did my fluency and technique. My hands relearned how to manipulate submillimeter blood vessels without injury, my fingers conjuring up the old tricks they’d once known. After a month, I was operating a nearly full load.
I kept myself limited to operating, leaving the administration, patient care, and night and weekend calls to Victoria and the other senior residents. I had already mastered those skills, anyway, and needed to learn only the nuances of complex operations to feel complete. I ended my days exhausted beyond measure, muscles on fire, slowly improving. But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl into bed next to Lucy, who had returned to a full work schedule as well. She was now in the first trimester of pregnancy, with the baby due in June, when I would complete residency. We had a photo of our child as a blastocyst, taken just before implantation. (“She has your cell membrane,” I remarked to Lucy.) Still, I was determined to restore my life to its prior trajectory.
Another stable scan six months after diagnosis passed, and I reopened my job search. With my cancer under control, I might have several years left. It seemed the career I had worked for years to attain, which had disappeared amid disease, was now back in reach. I could almost hear trumpets sounding a victory fanfare.
—
During my next visit with Emma, we talked about life and where it was taking me. I recalled Henry Adams trying to compare the scientific force of the combustion engine and the existential force of the Virgin Mary. The scientific questions were settled for now, allowing the existential ones full play, yet both were in the doctor’s purview. I had recently learned that the surgeon-scientist position at Stanford—the job for which I had been heir apparent—had been filled while I was out sick. I was crushed, and told her so.
“Well,” she said, “this doctor-professor thing can be a real grind. But you know that already. I’m sorry.”
“Yeah, I guess the science that excited me was about twenty-year projects. Without that kind of time frame, I’m not sure I’m all that interested in being a scientist.” I tried to console myself. “You can’t get much done in a couple of years.”
“Right. And just remember, you’re doing great. You’re working again. You’ve got a baby on the way. You’re finding your values, and that’s not easy.”
Later that day one of the younger professors, a former resident and close friend, stopped me in the hallway.
“Hey,” she said. “There’s been a lot of discussion in faculty meetings about what to do with you.”
“What to do with me, how?”
“I think some professors are concerned about you graduating.”
Graduation from residency required two things: meeting a set of national and local requirements, which I’d already done, and the blessing of the faculty.
“What?” I said. “I don’t mean to sound cocky, but I’m a good surgeon, just as good as—”
“I know. I think they probably just want to see you performing the full load of a chief. It
’s because they like you. Seriously.”
I realized it was true: For the past few months, I had been acting merely as a surgical technician. I had been using cancer as an excuse not to take full responsibility for my patients. On the other hand, it was a good excuse, damn it. But now I started coming in earlier, staying later, fully caring for the patients again, adding another four hours to a twelve-hour day. It put the patients back in the center of my mind at all times. The first two days I thought I would have to quit, battling waves of nausea, pain, and fatigue, retreating to an unused bed in down moments to sleep. But by the third day, I had begun to enjoy it again, despite the wreck of my body. Reconnecting with patients brought back the meaning of this work. I took antiemetics and nonsteroidal anti-inflammatory drugs (NSAIDs) between cases and just before rounds. I was suffering, but I was fully back. Instead of finding an unused bed, I started resting on the junior residents’ couch, supervising them on the care of my patients, lecturing as I rode a wave of back spasms. The more tortured my body became, the more I relished having done the work. At the end of the first week, I slept for forty hours straight.
But I was calling the shots:
“Hey, boss,” I said, “I was just reviewing cases for tomorrow, and I know the first case is booked interhemispheric, but I think it will be much safer and easier if we come parietal transcortical.”
“Really?” the attending said. “Let me look at the films….You know what? You’re right. Can you change the booking?”
The next day: “Hi, sir, it’s Paul. I just saw Mr. F and his family in the ICU—I think we’ll need to take him tomorrow for an ACDF. Okay if I book it? When are you free?”
When Breath Becomes Air Page 10