When Breath Becomes Air (11 page)

My brother Jeevan had arrived at my bedside. “You’ve accomplished so much,” he said. “You know that, don’t you?”

I sighed. He meant well, but the words rang hollow. My life had been building potential, potential that would now go unrealized. I had planned to do so much, and I had come so close. I was physically debilitated, my imagined future and my personal identity collapsed, and I faced the same existential quandaries my patients faced. The lung cancer diagnosis was confirmed. My carefully planned and hard-won future no longer existed. Death, so familiar to me in my work, was now paying a personal visit. Here we were, finally face-to-face, and yet nothing about it seemed recognizable. Standing at the crossroads where I should have been able to see and follow the footprints of the countless patients I had treated over the years, I saw instead only a blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all trace of familiarity.

The sun was setting. I would be discharged the next morning. An oncology appointment was set for later in the week, but the nurse told me my oncologist was going to drop by that night, before leaving to pick up her kids. Her name was Emma Hayward, and she wanted to say hello before the initial office visit. I knew Emma a little—I had treated some of her patients before—but we had never spoken beyond passing professional courtesies. My parents and brothers were scattered about the room, not saying much, while Lucy sat by the bed, holding my hand. The door opened and in she walked, her white coat showing the wear of a long day but her smile fresh. Trailing behind her were her fellow and a resident. Emma was only a few years older than I, her hair long and dark, but as is common to all those who spend time with death, streaked with gray. She pulled up a chair.

“Hi, my name is Emma,” she said. “I’m sorry to have to be so brief today, but I wanted to come by and introduce myself.”

We shook hands, my arm entangled in the IV line.

“Thanks for stopping by,” I said. “I know you have kids to pick up. This is my family.” She nodded hello at Lucy, at my brothers and parents.

“I’m sorry this is happening to you,” she said. “To all of you. There will be a lot of time to talk in a couple days. I went ahead and had the lab start running some tests on your tumor sample, which will help guide therapy. Treatment may be chemotherapy or not, depending on the tests.”

Eighteen months earlier, I’d been in the hospital with appendicitis. Then I’d been treated not as a patient but as a colleague, almost like a consultant on my own case. I expected the same here. “I know now’s not the time,” I proceeded, “but I will want to talk about the Kaplan-Meier survival curves.”

“No,” she said. “Absolutely not.”

A brief silence.
How dare she?
I thought.
This is how doctors—doctors like me—understand prognostication. I have a right to know.

“We can talk about therapies later,” she said. “We can talk about your going back to work, too, if that’s what you’d like to do. The traditional chemotherapy combination—cisplatin, pemetrexed, possibly with Avastin, too—has a high rate of peripheral neuropathy, so we’d probably switch the cisplatin for carboplatin, which will protect your nerves better, since you’re a surgeon.”

Go back to work?
What is she talking about? Is she delusional? Or am I dead wrong about my prognosis?
And how can we talk about any of this without a realistic estimate of survival?
The ground, having already buckled and roiled over the past few days, did so again.

“We can do details later,” she continued, “as I know this is a lot to absorb. Mostly, I just wanted to meet you all before our appointment Thursday. Is there anything I can do, or answer—besides survival curves—today?”

“No,” I said, my mind reeling. “Thanks so much for stopping by. I really appreciate it.”

“Here’s my card,” she said, “and there’s the clinic number. Feel free to call if anything comes up before we see you in two days.”

My family and friends quickly wired through our network of medical colleagues to find out who the best lung cancer oncologists in the country were. Houston and New York had major cancer centers; was that where I should be treated? The logistics of moving or temporarily relocating or what have you—that could be sorted out later. The replies came back quickly, and more or less unanimously: Emma not only was one of the best—a world-renowned oncologist who served as the lung cancer expert on one of the major national cancer advisory boards—but she was also known to be compassionate, someone who knew when to push and when to hold back. I briefly wondered at the string of events that had sent me looping through the world, my residency determined by a computerized match process, only to end up assigned here, with a freak diagnosis, in the hands of one of the finest doctors to treat it.

Having spent the better part of the week bedridden, with the cancer progressing, I had grown noticeably weaker. My body, and the identity tied to it, had radically changed. No longer was getting in and out of bed to go to the bathroom an automated subcortical motor program; it took effort and planning. The physical therapists left a list of items to ease my transition home: a cane, a modified toilet seat, foam blocks for leg support while resting. A bevy of new pain medications was prescribed. As I hobbled out of the hospital, I wondered how, just six days ago, I had spent nearly thirty-six straight hours in the operating room. Had I grown that much sicker in a week? Yes, in part. But I had also used a number of tricks and help from co-surgeons to get through those thirty-six hours—and, even so, I had suffered excruciating pain. Had the confirmation of my fears—in the CT scan, in the lab results, both showing not merely cancer but a body overwhelmed, nearing death—released me from the duty to serve, from my duty to patients, to neurosurgery, to the pursuit of goodness? Yes, I thought, and therein was the paradox: like a runner crossing the finish line only to collapse, without that duty to care for the ill pushing me forward, I became an invalid.

Usually when I had a patient with a strange condition, I consulted the relevant specialist and spent time reading about it. This seemed no different, but as I started reading about chemo, which included a whole variety of agents, and a raft of more modern novel treatments that targeted specific mutations, the sheer number of questions I had prevented any useful directed study. (Alexander Pope: “A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring.”) Without appropriate medical experience, I couldn’t place myself in this new world of information, couldn’t find my spot on the Kaplan-Meier curve. I waited, expectantly, for my clinic visit.

But mostly, I rested.

I sat, staring at a photo of Lucy and me from medical school, dancing and laughing; it was so sad, those two, planning a life together, unaware, never suspecting their own fragility. My friend Laurie had had a fiancé when she’d died in a car accident—was this any crueler?

My family engaged in a flurry of activity to transform my life from that of a doctor to that of a patient. We set up an account with a mail-order pharmacy, ordered a bed rail, and bought an ergonomic mattress to help alleviate the searing back pain. Our financial plan, which a few days before had banked on my income increasing sixfold in the next year, now looked precarious, and a variety of new financial instruments seemed necessary to protect Lucy. My father declared that these modifications were capitulations to the disease: I was going to beat this thing, I would somehow be cured. How often had I heard a patient’s family member make similar declarations? I never knew what to say to them then, and I didn’t know what to say to my father now.

What was the alternate story?

—

Two days later, Lucy and I met Emma in the clinic. My parents hovered in the waiting room. The medical assistant took my vitals. Emma and her nurse practitioner were remarkably punctual, and Emma pulled up a chair in front of me, to talk face-to-face, eye-to-eye.

“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.