“Hello again,” she said. “This is Alexis, my right hand.” She gestured to the NP, who sat at the computer taking notes. “I know there’s a lot to discuss, but first: How are you doing?”
“Okay, all things considered,” I said. “Enjoying my ‘vacation,’ I guess. How are you?”
“Oh, I’m okay.” She paused—patients don’t typically ask how their doctors are doing, but Emma was also a colleague. “I’m running the inpatient service this week, so you know how that is.” She smiled. Lucy and I did know. Outpatient specialists rotated on the inpatient service periodically, adding several hours of work in an already jam-packed day.
After more pleasantries, we settled into a comfortable discussion on the state of lung cancer research. There were two paths forward, she said. The traditional method was chemotherapy, which generically targeted rapidly dividing cells—primarily cancer cells but also cells in your bone marrow, hair follicles, intestines, and so forth. Emma reviewed the data and options, lecturing as if to another doctor—but again with the exception of any mention of Kaplan-Meier survival curves. Newer therapies had been developed, however, targeting specific molecular defects in the cancer itself. I had heard rumors of such efforts—it had long been a holy grail in cancer work—and was surprised to learn how much progress had been made. These treatments, it seemed, had led to long-term survival in “some” patients.
“Most of your tests are back,” Emma said. “You have a PI3K mutation, but no one’s sure what that means yet. The test for the most common mutation in patients like you, EGFR, is still pending. I’m betting that’s what you have, and if so, there’s a pill called Tarceva that you can take instead of chemotherapy. That result should be back tomorrow, Friday, but you’re sick enough that I’ve set you up for chemo starting Monday in case the EGFR test is negative.”
I immediately felt a kinship. This was exactly how I approached neurosurgery: have a plan A, B, and C at all times.
“With chemo, our main decision will be carboplatin versus cisplatin. In isolated studies, head-to-head, carboplatin is better tolerated. Cisplatin has potentially better results but much worse toxicity, especially for the nerves, though all the data is old, and there’s no direct comparison within our modern chemo regimens. Do you have any thoughts?”
“I’m less worried about protecting my hands for surgery,” I said. “There’s a lot I can do with my life. If I lose my hands, I can find another job, or not work, or something.”
She paused. “Let me ask this: Is surgery important to you? Is it something you want to do?”
“Well, yes, I’ve spent almost a third of my life preparing for it.”
“Okay, then I’m going to suggest we stick with the carboplatin. I don’t think it will change survival, and I do think it could dramatically change your quality of life. Do you have any other questions?”
She seemed clear that this was the way to go, and I was happy to follow. Maybe, I began to let myself believe, performing surgery again was a possibility. I felt myself relax a little.
“Can I start smoking?” I joked.
Lucy laughed, and Emma rolled her eyes.
“No. Any serious questions?”
“The Kaplan-Meier—”
“We’re not discussing that,” she said.
I didn’t understand her resistance. After all, I was a doctor familiar with these statistics. I could look them up myself…so that’s what I would have to do.
“Okay,” I said, “then I think everything is pretty clear. We’ll hear from you tomorrow about the EGFR results. If yes, then we’ll start a pill, Tarceva. If no, then we start chemotherapy Monday.”
“Right. The other thing I want you to know is this: I am your doctor now. Any problem you have, from primary care to whatever, you come to us first.”
Again, I felt a pang of kinship.
“Thanks,” I said. “And good luck on the inpatient wards.”
She left the room, only to pop her head back in a second later. “Feel free to say no to this, but there are some lung cancer fundraisers who would love to meet you. Don’t answer now—think about it, and let Alexis know if you might be interested. Don’t do anything you don’t want to.”
As we left, Lucy remarked, “She’s great. She’s a good fit for you. Although…” She smiled. “I think she likes you.”
“And?”
“Well, there’s that study that says doctors do a worse job prognosticating for patients they’re personally invested in.”
“On our list of things to worry about,” I said, with a laugh, “I think that’s in the bottom quartile.”
I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
—
Slowly the medical fog was clearing—at least now I had enough information to dive into the literature. While the numbers were fuzzy, having an EGFR mutation seemed to add around a year of life on average, with the potential for long-term survival; not having it suggested an 80 percent chance of death within two years. Clarifying the rest of my life was going to be a process.
The next day, Lucy and I went to the sperm bank, to preserve gametes and options. We had always planned to have kids at the end of my residency, but now…The cancer drugs would have an unknown effect on my sperm, so to keep a chance of having children, we’d have to freeze sperm before I started treatment. A young woman walked us through a variety of payment plans and options for storage and legal forms for ownership. On her desk were a multitude of colorful pamphlets about various social outings for young people with cancer: improv groups, a cappella groups, open-mike nights, and so on. I envied their happy faces, knowing that, statistically, they all probably had highly treatable forms of cancer, and reasonable life expectancies. Only 0.0012 percent of thirty-six-year-olds get lung cancer. Yes, all cancer patients are unlucky, but there’s cancer, and then there’s CANCER, and you have to be really unlucky to have the latter. When she asked us to specify what would happen to the sperm if one of us “were to die”—who would legally own them in the event of death—tears began rolling down Lucy’s face.
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 entrust
ed 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 rem
ained 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.