When Breath Becomes Air (12 page)

The word
hope
first appeared in English about a thousand years ago, denoting some combination of confidence and desire. But what I desired—life—was not what I was confident about—death. When I talked about hope, then, did I really mean “Leave some room for unfounded desire?” No. Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals, and confidence bounds. So did I mean “Leave some room for a statistically improbable but still plausible outcome—a survival just above the measured 95 percent confidence interval?” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

It occurred to me that my relationship with statistics changed as soon as I became one.

During my residency, I had sat with countless patients and families to discuss grim prognoses; it’s one of the most important jobs you have, as a physician. It’s easier when the patient is ninety-four, in the last stages of dementia, with a severe brain bleed. But for someone like me—a thirty-six-year-old given a diagnosis of terminal cancer—there aren’t really words.

The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s expectations are way out of the bounds of probability—someone expecting to live to 130, say, or someone thinking his benign skin spots are signs of imminent death—doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility. What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.

When we arrived home from the sperm bank, I got a phone call saying that I did, in fact, have a treatable mutation (EGFR). Chemo was off, thankfully, and Tarceva, a little white pill, became my treatment. I soon began to feel stronger. And even though I no longer really knew what it was, I felt it: a drop of hope. The fog surrounding my life rolled back another inch, and a sliver of blue sky peeked through. In the weeks that followed, my appetite returned. I put on a little weight. I developed the characteristic severe acne that correlates with a good response. Lucy had always loved my smooth skin, but now it was pockmarked and, with my blood thinners, constantly bleeding. Any part of me that identified with being handsome was slowly being erased—though, in fairness, I was happy to be uglier and alive. Lucy said she loved my skin just the same, acne and all, but while I knew that our identities derive not just from the brain, I was living its embodied nature. The man who loved hiking, camping, and running, who expressed his love through gigantic hugs, who threw his giggling niece high in the air—that was a man I no longer was. At best, I could aim to be him again.

At our first of several biweekly appointments, Emma’s and my discussion tended from the medical (“How’s the rash?”) to the more existential. The traditional cancer narrative—that one ought to recede, spend time with family, and settle one’s toes in the peat—was one option.

“Many people, once diagnosed, quit work entirely,” she said. “Others focus on it heavily. Either way is okay.”

“I had mapped out this whole forty-year career for myself—the first twenty as a surgeon-scientist, the last twenty as a writer. But now that I am likely well into my last twenty years, I don’t know which career I should be pursuing.”

“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 identity. Racking back pain can mold an identity; 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, pushing 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 Cañada 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 passed 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 assemble 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 relationship 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, 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.