When Breath Becomes Air

  “Paul, what happens if you cut two millimeters deeper right here?” He pointed.

  Neuroanatomy slides whirred through my head.

  “Double vision?”

  “No,” he said. “Locked-in syndrome.” Another two millimeters, and the patient would be completely paralyzed, save for the ability to blink. He didn’t look up from the microscope. “And I know this because the third time I did this operation, that’s exactly what happened.”

  Neurosurgery requires a commitment to one’s own excellence and a commitment to another’s identity. The decision to operate at all involves an appraisal of one’s own abilities, as well as a deep sense of who the patient is and what she holds dear. Certain brain areas are considered near-inviolable, like the primary motor cortex, damage to which results in paralysis of affected body parts. But the most sacrosanct regions of the cortex are those that control language. Usually located on the left side, they are called Wernicke’s and Broca’s areas; one is for understanding language and the other for producing it. Damage to Broca’s area results in an inability to speak or write, though the patient can easily understand language. Damage to Wernicke’s area results in an inability to understand language; though the patient can still speak, the language she produces is a stream of unconnected words, phrases, and images, a grammar without semantics. If both areas are damaged, the patient becomes an isolate, something central to her humanity stolen forever. After someone suffers a head trauma or a stroke, the destruction of these areas often restrains the surgeon’s impulse to save a life: What kind of life exists without language?

  When I was a med student, the first patient I met with this sort of problem was a sixty-two-year-old man with a brain tumor. We strolled into his room on morning rounds, and the resident asked him, “Mr. Michaels, how are you feeling today?”

  “Four six one eight nineteen!” he replied, somewhat affably.

  The tumor had interrupted his speech circuitry, so he could speak only in streams of numbers, but he still had prosody, he could still emote: smile, scowl, sigh. He recited another series of numbers, this time with urgency. There was something he wanted to tell us, but the digits could communicate nothing other than his fear and fury. The team prepared to leave the room; for some reason, I lingered.

  “Fourteen one two eight,” he pleaded with me, holding my hand. “Fourteen one two eight.”

  “I’m sorry.”

  “Fourteen one two eight,” he said mournfully, staring into my eyes.

  And then I left to catch up to the team. He died a few months later, buried with whatever message he had for the world.

  When tumors or malformations abut these language areas, the surgeon takes numerous precautions, ordering a host of different scans, a detailed neuropsychological examination. Critically, however, the surgery is performed with the patient awake and talking. Once the brain is exposed, but before the tumor excision, the surgeon uses a hand-held ball-tip electrode to deliver electrical current to stun a small area of the cortex while the patient performs various verbal tasks: naming objects, reciting the alphabet, and so on. When the electrode sends current into a critical piece of cortex, it disrupts the patient’s speech: “A B C D E guh guh guh rrrr…F G H I…” The brain and the tumor are thus mapped to determine what can be resected safely, and the patient is kept awake throughout, occupied with a combination of formal verbal tasks and small talk.

  One evening, as I was prepping for one of these cases, I reviewed the patient’s MRI and noted that the tumor completely covered the language areas. Not a good sign. Reviewing the notes, I saw that the hospital’s tumor board—an expert panel of surgeons, oncologists, radiologists, and pathologists—had deemed the case too dangerous for surgery. How could the surgeon have opted to proceed? I became a little indignant: at a certain point, it was our job to say no. The patient was wheeled into the room. He fixed his eyes on me and pointed to his head. “I want this thing out of my fucking brain. Got it?”

  The attending strolled in and saw the expression on my face. “I know,” he said. “I tried talking him out of this for about two hours. Don’t bother. Ready to go?”

  Instead of the usual alphabet recital or counting exercise, we were treated, throughout the surgery, to a litany of profanity and exhortation.

  “Is that fucking thing out of my head yet? Why are you slowing down? Go faster! I want it out. I can stay here all fucking day, I don’t care, just get it out!”

  I slowly removed the enormous tumor, attentive to the slightest hint of speech difficulty. With the patient’s monologue unceasing, the tumor now sat on a petri dish, his clean brain gleaming.

  “Why’d you stop? You some kinda asshole? I told you I want the fucking thing gone!”

  “It’s done,” I said. “It’s out.”

  How was he still talking? Given the size and location of the tumor, it seemed impossible. Profanity supposedly ran on a slightly different circuit from the rest of language. Perhaps the tumor had caused his brain to rewire somehow…

  But the skull wasn’t going to close itself. There would be time for speculation tomorrow.

  —

  I had reached the pinnacle of residency. I had mastered the core operations. My research had garnered the highest awards. Job interest was trickling in from all over the country. Stanford launched a search for a position that fit my interests exactly, for a neurosurgeon-neuroscientist focused on techniques of neural modulation. One of my junior residents came up to me and said, “I just heard from the bosses—if they hire you, you’re going to be my faculty mentor!”

  “Shhhh,” I said. “Don’t jinx it.”

  It felt to me as if the individual strands of biology, morality, life, and death were finally beginning to weave themselves into, if not a perfect moral system, a coherent worldview and a sense of my place in it. Doctors in highly charged fields met patients at inflected moments, the most authentic moments, where life and identity were under threat; their duty included learning what made that particular patient’s life worth living, and planning to save those things if possible—or to allow the peace of death if not. Such power required deep responsibility, sharing in guilt and recrimination.

  I was at a conference in San Diego when my phone rang. My co-resident, Victoria.

  “Paul?”

  Something was wrong. My stomach tightened.

  “What’s up?” I said.

  Silence.

  “Vic?”

  “It’s Jeff. He killed himself.”

  “What?”

  Jeff was finishing his surgical fellowship in the Midwest, and we were both so punishingly busy…we’d lost touch. I tried to recall our last conversation and couldn’t.

  “He, uh—he apparently had a difficult complication, and his patient died. Last night he climbed onto the roof of a building and jumped off. I don’t really know anything else.”

  I searched for a question to bring understanding. None was forthcoming. I could only imagine the overwhelming guilt, like a tidal wave, that had lifted him up and off that building.

  I wished, desperately, that I could’ve been walking with him out the door of the hospital that evening. I wished we could’ve commiserated as we used to. I wished I could have told Jeff what I had come to understand about life, and our chosen way of life, if only to hear his wise, clever counsel. Death comes for all of us. For us, for our patients: it is our fate as living, breathing, metabolizing organisms. Most lives are lived with passivity toward death—it’s something that happens to you and those around you. But Jeff and I had trained for years to actively engage with death, to grapple with it, like Jacob with the angel, and, in so doing, to confront the meaning of a life. We had assumed an onerous yoke, that of mortal responsibility. Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’
t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.

  PART II

  Cease Not till Death

  If I were a writer of books, I would compile a register, with a comment, of the various deaths of men: he who should teach men to die would at the same time teach them to live.

  —Michel de Montaigne, “That to Study Philosophy Is to Learn to Die”

  LYING NEXT TO LUCY in the hospital bed, both of us crying, the CT scan images still glowing on the computer screen, that identity as a physician—my identity—no longer mattered. With the cancer having invaded multiple organ systems, the diagnosis was clear. The room was quiet. Lucy told me she loved me. “I don’t want to die,” I said. I told her to remarry, that I couldn’t bear the thought of her being alone. I told her we should refinance the mortgage immediately. We started calling family members. At some point, Victoria came by the room, and we discussed the scan and the likely future treatments. When she brought up the logistics of returning to residency, I stopped her.

  “Victoria,” I said, “I’m never coming back to this hospital as a doctor. Don’t you think?”

  One chapter of my life seemed to have ended; perhaps the whole book was closing. Instead of being the pastoral figure aiding a life transition, I found myself the sheep, lost and confused. Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward. Now I would have to work around it.

  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.