When Breath Becomes Air

  “Emma,” I said, “what’s the next step?”

  “Get stronger. That’s it.”

  “But when the cancer recurs…I mean, the probabilities…” I paused. First-line therapy (Tarceva) had failed. Second-line therapy (chemo) had nearly killed me. Third-line therapy, if I could even get there, made few promises. Beyond that, the vast unknown of experimental treatments. Phrases of doubt fell from my mouth. “I mean, getting back to the OR, or to walking, or even—”

  “You have five good years left,” she said.

  She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea. Like that patient who could speak only in numbers. Like she was not so much speaking to me as pleading, a mere human, with whatever forces and fates truly control these things. There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss.

  Doctors, it turns out, need hope, too.

  —

  On the way home from the appointment with Emma, Lucy’s mom called to say they were headed to the hospital. Lucy was in labor. (“Make sure you ask about the epidural early,” I told her. She had suffered enough.) I returned to the hospital, pushed by my father in a wheelchair. I lay down on a cot in the delivery room, heat packs and blankets keeping my skeletal body from shivering. For the next two hours, I watched Lucy and the nurse go through the ritual of labor. As a contraction built up, the nurse counted off the pushing: “And a one two three four five six seven eight nine and a ten!”

  Lucy turned to me, smiling. “It feels like I’m playing a sport!” she said.

  I lay on the cot and smiled back, watching her belly rise. There would be so many absences in Lucy’s and my daughter’s life—if this was as present as I could be, then so be it.

  Sometime after midnight, the nurse nudged me awake. “It’s almost time,” she whispered. She gathered the blankets and helped me to a chair, next to Lucy. The obstetrician was already in the room, no older than I. She looked up at me as the baby was crowning. “I can tell you one thing: your daughter has hair exactly like yours,” she said. “And a lot of it.” I nodded, holding Lucy’s hand during the last moments of her labor. And then, with one final push, on July 4, at 2:11 A.M., there she was. Elizabeth Acadia—Cady; we had picked the name months before.

  “Can we put her on your skin, Papa?” the nurse asked me.

  “No, I’m too c-c-cold,” I said, my teeth chattering. “But I would love to hold her.”

  They wrapped her in blankets and handed her to me. Feeling her weight in one arm, and gripping Lucy’s hand with the other, the possibilities of life emanated before us. The cancer cells in my body would still be dying, or they’d start growing again. Looking out over the expanse ahead I saw not an empty wasteland but something simpler: a blank page on which I would go on.

  —

  Yet there is dynamism in our house.

  Day to day, week to week, Cady blossoms: a first grasp, a first smile, a first laugh. Her pediatrician regularly records her growth on charts, tick marks indicating her progress over time. A brightening newness surrounds her. As she sits in my lap smiling, enthralled by my tuneless singing, an incandescence lights the room.

  Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence—and, eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.

  If time dilates when one moves at high speeds, does it contract when one moves barely at all? It must: the days have shortened considerably.

  With little to distinguish one day from the next, time has begun to feel static. In English, we use the word time in different ways: “The time is two forty-five” versus “I’m going through a tough time.” These days, time feels less like the ticking clock and more like a state of being. Languor settles in. There’s a feeling of openness. As a surgeon, focused on a patient in the OR, I might have found the position of the clock’s hands arbitrary, but I never thought them meaningless. Now the time of day means nothing, the day of the week scarcely more. Medical training is relentlessly future-oriented, all about delayed gratification; you’re always thinking about what you’ll be doing five years down the line. But now I don’t know what I’ll be doing five years down the line. I may be dead. I may not be. I may be healthy. I may be writing. I don’t know. And so it’s not all that useful to spend time thinking about the future—that is, beyond lunch.

  Verb conjugation has become muddled, as well. Which is correct: “I am a neurosurgeon,” “I was a neurosurgeon,” or “I had been a neurosurgeon before and will be again”? Graham Greene once said that life was lived in the first twenty years and the remainder was just reflection. So what tense am I living in now? Have I proceeded beyond the present tense and into the past perfect? The future tense seems vacant and, on others’ lips, jarring. A few months ago, I celebrated my fifteenth college reunion at Stanford and stood out on the quad, drinking a whiskey as a pink sun dipped below the horizon; when old friends called out parting promises—“We’ll see you at the twenty-fifth!”—it seemed rude to respond with “Well…probably not.”

  Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.

  Yet one thing cannot be robbed of her futurity: our daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters—but what would they say? I don’t know what this girl will be like when she is fifteen; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.

  That message is simple:

  When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.

  EPILOGUE

  Lucy Kalanithi

  You left me, sweet, two legacies,—

  A legacy of love

  A Heavenly Father would content,

  Had he the offer of;

  You left me boundaries of pain

  Capacious as the sea,

  Between eternity and time,

  Your consciousness and me.

  —Emily Dickinson

  PAUL DIED ON MONDAY, March 9, 2015, surrounded by his family, in a hospital bed roughly two hundred yards from the labor and delivery ward where our daughter, Cady, had entered the world eight months before. Between Cady’s birth and Paul’s death, if you’d seen us sucking on ribs at our local barbecue restaurant and smiling over a shared beer, a dark-haired baby with long eyelashes napping in her stroller beside us, you’d never have guessed that Paul likely had less than a year to live, nor that we understood that.

  It was around Cady’s first Christmas, when she was f
ive months old, that Paul’s cancer began to resist the third-line drugs recommended after Tarceva and then chemotherapy had stopped working. Cady tried her first solid food during that holiday season, snug in candy-cane-striped pajamas, gumming mashed yams as family gathered at Paul’s childhood home in Kingman, Arizona, the house aglow with candles and chatter. His strength waned over the following months, but we continued to experience joyful moments, even in the midst of our sorrow. We hosted cozy dinner parties, held each other at night, and delighted in our daughter’s bright eyes and calm nature. And, of course, Paul wrote, reclining in his armchair, wrapped in a warm fleece blanket. In his final months, he was singularly focused on finishing this book.

  As winter turned to spring, the saucer magnolias in our neighborhood bloomed large and pink, but Paul’s health was declining rapidly. By late February, he needed supplemental oxygen to keep his breathing comfortable. I was adding his untouched lunch to the trash can atop his untouched breakfast, and a few hours later I’d add an untouched dinner to the pile. He used to love my breakfast sandwiches—egg, sausage, and cheese on a roll—but with his waning appetite we’d changed to eggs and toast, then just eggs, until even those became intolerable. Even his favorite smoothies, the glasses I filled with a steady stream of calories, were unappetizing.

  Bedtime crept earlier, Paul’s voice slurred intermittently, and his nausea became unremitting. A CT scan and brain MRI confirmed worsening cancer in Paul’s lungs and new tumors that had landed in his brain, including leptomeningeal carcinomatosis, a rare and lethal infiltration that brought with it a prognosis of only several months and the looming shadow of swift neurologic decline. The news hit Paul hard. He said little, but as a neurosurgeon, he knew what lay ahead. Although Paul accepted his limited life expectancy, neurologic decline was a new devastation, the prospect of losing meaning and agency agonizing. We strategized with Paul’s oncologist about his top priority: preserving mental acuity as long as possible. We arranged entry into a clinical trial, consultation with a neuro-oncology specialist, and a visit with his palliative-care team to discuss hospice options, all in service of maximizing the quality of his remaining time. My heart swelled even as I steeled myself, anticipating his suffering, worrying that he had only weeks left—if that. I envisioned his funeral as we held hands. I didn’t know that Paul would die within days.

  We spent Paul’s last Saturday with family in the nest of our living room, Paul holding Cady in his armchair; his father on my nursing glider; his mother and I on sofas nearby. Paul sang to Cady and bounced her gently in his lap. She grinned widely, oblivious to the tubing that delivered oxygen to his nose. His world became smaller; I deflected nonfamily visitors, Paul telling me, “I want everyone to know that even if I don’t see them, I love them. I cherish their friendship, and one more glass of Ardbeg won’t change that.” He didn’t write anything that day. The manuscript for this book was only partially finished, and Paul now knew that he was unlikely to complete it—unlikely to have the stamina, the clarity, the time.

  To prepare for the clinical trial, Paul had stopped taking the daily targeted-therapy pill that had been insufficiently controlling his cancer. There was a risk that the cancer might grow rapidly, or “flare,” after he stopped the medication. Therefore, Paul’s oncologist had instructed me to videotape him daily, doing the same task, to track any deficits in his speech or gait. “April is the cruellest month,” Paul read aloud in the living room that Saturday as I filmed, choosing T. S. Eliot’s The Waste Land as his script. “Mixing memory and desire, stirring / Dull roots with spring rain.” The family chuckled when, though it was not part of the assignment, he set the book facedown on his lap and insisted on reciting from memory.

  “So like him!” his mother said, smiling.

  The next day, Sunday, we hoped for a continuation of the calm weekend. If Paul felt well enough, we would attend church, then take Cady and her cousin to the baby swings at the park up the hill. We’d continue to absorb the recent painful news, share the sorrow, savor our time together.

  But instead, time sped up.

  Early Sunday morning, I stroked Paul’s forehead and found it scorching with fever, 104 degrees, though he was relatively comfortable and free of other new symptoms. We made it in and out of the emergency room within a few hours, Paul’s father and Suman with us, returning home to the rest of the family after starting antibiotics in case of pneumonia (Paul’s chest X-ray was dense with tumors, which could obscure an infection). But was this, instead, the cancer progressing rapidly? Paul napped comfortably in the afternoon, but he was gravely ill. I started to cry as I watched him sleep, then crept out to our living room, where his father’s tears joined mine. I already missed him.

  Sunday evening, Paul’s condition worsened abruptly. He sat on the edge of our bed, struggling to breathe—a startling change. I called an ambulance. When we reentered the emergency room, Paul on a gurney this time, his parents close behind us, he turned toward me and whispered, “This might be how it ends.”

  “I’m here with you,” I said.

  The hospital staff greeted Paul warmly, as always. But they moved quickly once they saw his condition. After initial testing, they placed a mask over his nose and mouth to help his breathing via BiPAP, a breathing support system that supplied a strong mechanized flow of air each time he inhaled, doing much of the work of breathing for him. Though it helps with respiratory mechanics, BiPAP can be hard work for a patient—noisy and forceful, blowing one’s lips apart with each breath like those of a dog with its head out a car window. I stood close, leaning over the gurney, my hand in Paul’s as the steady whoosh, whoosh of the machine began.

  Paul’s blood carbon dioxide level was critically high, indicating that the work of breathing was overwhelming him. Blood tests suggested that some of the excess carbon dioxide had been accumulating over days to weeks, as his lung disease and debility had advanced. Because his brain had slowly become acclimated to higher-than-normal levels of carbon dioxide, he remained lucid. He observed. He understood, as a physician, the ominous test results. I understood them, too, walking behind him as he was wheeled to an intensive-care room, one where so many of his own patients had struggled before or after neurosurgery, their families assembled in vinyl chairs by their bedsides. “Will I need to be intubated?” he asked me between BiPAP breaths when we arrived. “Should I be intubated?”

  Through the night, Paul discussed that question in a series of conversations with his physicians, his family, and then just me. Around midnight, the critical-care attending, a longtime mentor to Paul, came in to discuss treatment options with the family. BiPAP was a temporary solution, he said. The only remaining intervention would be for Paul to be intubated—put on a ventilator. Was that what he wanted?

  The key question quickly came into view: Could the sudden respiratory failure be reversed?

  Of concern was whether Paul would remain too ill to ever come off the ventilator—would he be lost to delirium and then organ failure, first mind and then body slipping away? We’d witnessed this agonizing scenario as physicians. Paul explored the alternative: in lieu of intubation, he could choose “comfort care,” though death would come more surely and swiftly. “Even if I make it through this,” he said, thinking of the cancer in his brain, “I’m not sure I see a future that includes meaningful time.” His mother chimed in, desperately. “No decisions tonight, Pubby,” she said. “Let’s all get some rest.” After ensuring his “do not resuscitate” status, Paul agreed. Sympathetic nurses brought him extra blankets. I switched off the fluorescent lights.

  Paul managed to doze until sunrise, his father sitting vigil while I napped briefly in an adjacent room, hoping to preserve my mental strength, knowing that the following day might be the hardest of my life. I crept back to Paul’s room at six A.M., the lights still low, the intensive-care monitors chiming intermittently. Paul opened his eyes. We talked again about “comfort care”—avoiding aggressive attempts to forestall his decline—and he wond
ered aloud whether he could go home. He was so ill that I worried he might suffer and die on the way. However, I said I would do everything possible to take him home if that was most important to him, nodding that yes, comfort care might be the direction we were headed. Or was there some way to re-create home here? Between BiPAP puffs, he answered: “Cady.”

  Cady arrived in short order—our friend Victoria had retrieved her from home—and began her own unwitting, cheerful vigil, happily nestled in the crook of Paul’s right arm, tugging at her tiny socks, batting at his hospital blankets, smiling and cooing, unbothered by the BiPAP machine as it continued to blow, keeping Paul alive.

  The medical team came by on rounds, discussing Paul’s case outside the room, where his family and I joined them. Paul’s acute respiratory failure was likely rapid cancer progressing. His carbon dioxide level was rising still—a hardening indication for intubation. The family was torn: Paul’s oncologist had phoned in, hopeful that the acute problem could be ameliorated, but the physicians present were less optimistic. I entreated them to weigh in with as much conviction as possible on the chance of reversing his abrupt decline.

  “He doesn’t want a Hail Mary,” I said. “If he doesn’t have a chance of meaningful time, he wants to take the mask off and hold Cady.”

  I returned to Paul’s bedside. He looked at me, his dark eyes alert above the nose bridge of the BiPAP mask, and said clearly, his voice soft but unwavering, “I’m ready.”