When Breath Becomes Air Part 6

I left the OR shortly after, then gathered my things, which had acc.u.mulated over seven years of work-extra sets of clothes for the nights you don't leave, toothbrushes, bars of soap, phone chargers, snacks, my skull model and collection of neurosurgery books, and so on. On second thought, I left my books behind. They'd be of more use here.

On my way out to the parking lot, a fellow approached to ask me something, but his pager went off. He looked at it, waved, turned, and ran back in to the hospital-"I'll catch you later!" he called over his shoulder. Tears welled up as I sat in the car, turned the key, and slowly pulled out into the street. I drove home, walked through the front door, hung up my white coat, and took off my ID badge. I pulled the battery out of my pager. I peeled off my scrubs and took a long shower.

Later that night, I called Victoria and told her I wouldn't be in on Monday, or possibly ever again, and wouldn't be setting the OR schedule.

"You know, I've been having this recurring nightmare that this day was coming," she said. "I don't know how you did this for so long."

- Lucy and I met with Emma on Monday. She confirmed the plan we'd envisioned: bronchoscopic biopsy, look for targetable mutations, otherwise chemo. The real reason I was there, though, was for her guidance. I told her I was taking leave from neurosurgery.

"Okay," she said. "That's fine. You can stop neurosurgery if, say, you want to focus on something that matters more to you. But not because you are sick. You aren't any sicker than you were a week ago. This is a b.u.mp in the road, but you can keep your current trajectory. Neurosurgery was important to you."

Once again, I had traversed the line from doctor to patient, from actor to acted upon, from subject to direct object. My life up until my illness could be understood as the linear sum of my choices. As in most modern narratives, a character's fate depended on human actions, his and others. King Lear's Gloucester may complain about human fate as "flies to wanton boys," but it's Lear's vanity that sets in motion the dramatic arc of the play. From the Enlightenment onward, the individual occupied center stage. But now I lived in a different world, a more ancient one, where human action paled against superhuman forces, a world that was more Greek tragedy than Shakespeare. No amount of effort can help Oedipus and his parents escape their fates; their only access to the forces controlling their lives is through the oracles and seers, those given divine vision. What I had come for was not a treatment plan-I had read enough to know the medical ways forward-but the comfort of oracular wisdom.

"This is not the end," she said, a line she must have used a thousand times-after all, did I not use similar speeches to my own patients?-to those seeking impossible answers. "Or even the beginning of the end. This is just the end of the beginning."

And I felt better.

A week after the biopsy, Alexis, the nurse pract.i.tioner, called. There were no new targetable mutations, so chemotherapy was the only option, and it was being set up for Monday. I asked about the specific agents and was told I'd have to talk to Emma. She was en route to Lake Tahoe with her kids, but she'd give me a call over the weekend.

The next day, a Sat.u.r.day, Emma called. I asked her what she thought about chemotherapy agents.

"Well," she said. "Do you have specific thoughts?"

"I guess the main question is whether to include Avastin," I said. "I know the data is mixed and that it adds potential side effects, and some cancer centers are turning away from it. In my mind, though, since there are a lot of studies supporting its use, I'd lean toward including it. We can discontinue it if I have a bad reaction to it. If that seems sensible to you."

"Yeah, that sounds about right. Insurance companies also make it hard to add it later, so that's another reason to use it up front."

"Thanks for calling. I'll let you get back to enjoying the lake."

"Okay. But there's one thing." She paused. "I'm totally happy for us to make your medical plan together; obviously, you're a doctor, you know what you're talking about, and it's your life. But if you ever want me to just be the doctor, I'm happy to do that, too."

I hadn't ever considered that I could release myself from the responsibility of my own medical care. I'd just a.s.sumed all patients became experts at their own diseases. I remembered how, as a green medical student, knowing nothing, I would often end up asking patients to explain their diseases and treatments to me, their blue toes and pink pills. But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient. And I realized I was trying to do the same thing now, my doctor-self remaining responsible for my patient-self. Maybe I'd been cursed by a Greek G.o.d, but abdicating control seemed irresponsible, if not impossible.

- Chemotherapy began on Monday. Lucy, my mother, and I went to the infusion center together. I had an IV placed, settled into an easy chair, and waited. The drug c.o.c.ktail would take four and a half hours to infuse. I pa.s.sed the time napping, reading, and sometimes blankly staring, with Lucy and my mother next to me, interrupting the silence with occasional small talk. The other occupants of the room were in various states of health-some bald, some well-coiffed, some withered, some sprightly, some disheveled, some dapper. All lay still, silent, with IV tubing dripping poison into outstretched arms. I was to return every three weeks for treatment.

I began to feel the effects the next day, a deep fatigue, a profound bone-weariness setting in. Eating, normally a source of great pleasure, was like drinking seawater. Suddenly, all of my joys were salted. For breakfast, Lucy made me a bagel with cream cheese; it tasted like a salt lick. I set it aside. Reading was exhausting. I had agreed to write a few chapters on the therapeutic potential of my research with V for two major neurosurgical textbooks. That, too, I set aside. The days pa.s.sed, television and forced feedings marking the time. A pattern developed over the weeks: the malaise would slowly ease, normalcy returning just in time for the next treatment.

The cycles continued; I shuffled in and out of the hospital with minor complications, which were just enough to preclude any return to work. The neurosurgery department determined that I had met all national and local criteria for graduation; the ceremony was scheduled for a Sat.u.r.day, about two weeks before Lucy's due date.

The day arrived. As I stood in our bedroom, dressing for graduation-the culmination of seven years of residency-a piercing nausea struck me. This was unlike the usual nausea of chemotherapy, which washed over you like a wave and, like a wave, could be ridden. I began uncontrollably vomiting green bile, its chalky taste distinct from stomach acid. This was from deep in my gut.

I would not be going to graduation, after all.

I needed IV fluids to avoid dehydration, so Lucy drove me to the emergency department and rehydration began. The vomiting gave way to diarrhea. The medical resident, Brad, and I chatted amicably, and I relayed my medical history, covering all my medications, and we ended up discussing advances in molecular therapies, especially Tarceva, which I was still taking. The medical plan was simple: keep me hydrated with intravenous fluids until I could drink enough by mouth. That evening, I was admitted to a hospital room. But when the nurse reviewed my medication list, I noticed Tarceva was not on it. I asked her to call the resident to correct the oversight. These things happen. I was taking a dozen medications, after all. Keeping track was not easy.

It was well past midnight when Brad appeared.

"I heard you had a question about your medications?" he asked.

"Yeah," I said. "Tarceva wasn't ordered. Do you mind ordering it?"

"I decided to take you off it."

"Why is that?"

"Your liver enzymes are too high to take it."

I was confused. My liver enzymes had been high for months; if this was an issue, why hadn't we discussed it before? In any case, this was clearly a mistake. "Emma-my oncologist, your boss-has seen these numbers, and she wants to keep me on it."

Residents routinely have to make medical decisions without the attending's input. But now that he had Emma's opinion, surely he would capitulate.

"But it might be causing your GI problems."

My confusion deepened. Usually invoking the attending's orders ends the discussion. "I've been taking it for a year without any problems," I said. "You think Tarceva is causing this all of a sudden, and not the chemotherapy?"

"Maybe, yeah."

Confusion yielded to anger. Some kid two years out of med school, no older than my junior residents, was really arguing with me? It'd be one thing if he were right, but he wasn't making any sense. "Um, didn't I mention this afternoon that without that pill, my bone metastases become active and produce excruciating pain? I don't mean to sound dramatic, but I've broken bones boxing, and this is far more painful. As in, ten-out-of-ten pain. As in, I-Will-Actually-Soon-Be-Screaming pain."

"Well, given the half-life of the drug, that probably won't happen for a day or so."

I could see that in Brad's eyes I was not a patient, I was a problem: a box to be checked off.

"Look," he continued, "if you weren't you, we wouldn't even be having this conversation. I'd just stop the drug and make you prove it causes all this pain."

What had happened to our amicable chat this afternoon? I thought back to med school, when a patient had told me that she always wore her most expensive socks to the doctor's office, so that when she was in a patient's gown and shoeless, the doctor would see the socks and know she was a person of substance, to be treated with respect. (Ah, there's the problem-I was wearing hospital-issue socks, which I had been stealing for years!) "Anyway, Tarceva is a special drug, and it requires a fellow or attending to sign off on it. Do you really want me to wake someone up for this? Can't it wait till morning?"

And there it was.

Meeting his obligation to me meant adding one more thing to his to-do list: an embarra.s.sing phone call with his boss, revealing his error. He was working the night s.h.i.+ft. Residency education regulations had forced most programs to adopt s.h.i.+ft work. And along with s.h.i.+ft work comes a kind of s.h.i.+ftiness, a subtle undercutting of responsibility. If he could just push it off for a few more hours, I would become somebody else's problem.

"I usually take it at five A.M.," I said. "And you know as well as I do that 'waiting till morning' means letting someone deal with it after morning rounds, which will be more like the afternoon. Right?"

"Okay, fine," he said, and left the room.

When morning arrived, I discovered that he had not ordered the medication.

Emma dropped in to say h.e.l.lo and told me she would sort out the Tarceva order. She wished me a speedy recovery and apologized for the fact that she was heading out of town for a week. Over the course of the day I began to deteriorate, my diarrhea rapidly worsening. I was being rehydrated, but not quickly enough. My kidneys began to fail. My mouth became so dry I could not speak or swallow. At the next lab check, my serum sodium had reached a near-fatal level. I was transferred to the ICU. Part of my soft palate and pharynx died from dehydration and peeled out of my mouth. I was in pain, floating through varying levels of consciousness, while a pantheon of specialists was brought together to help: medical intensivists, nephrologists, gastroenterologists, endocrinologists, infectious disease specialists, neurosurgeons, general oncologists, thoracic oncologists, otolaryngologists. Lucy, thirty-eight weeks pregnant, stayed with me by day and secretly moved into my old call room, steps from the ICU, so she could check on me at night. She and my father also lent their voices.

During lucid moments, I was acutely aware that with this many voices, cacophony results. In medicine, this is known as the WICOS problem: Who Is the Captain Of the s.h.i.+p? The nephrologists disagreed with the ICU doctors, who disagreed with the endocrinologists, who disagreed with the oncologists, who disagreed with the gastroenterologists. I felt the responsibility of my care: during bouts of consciousness, I typed out the sequential details of my current illness and, with Lucy's help, tried to corral all the doctors to keep the facts and interpretations straight. Later, while half asleep, I could dimly hear my father and Lucy discussing my condition with each team of doctors. We suspected that the main plan should just be to treat me with fluids until the effects of the chemotherapy wore off. But each group of specialists had to allow for more esoteric possibilities and advocate tests and treatments for them, some of which seemed unnecessary and ill-advised. Samples were taken, scans were ordered, medications were given; I began losing track of events and time. I requested that these plans be explained to me, but sentences would become slippery, voices would dampen and m.u.f.fle, and darkness would descend in the midst of doctors' speeches as I wobbled in and out of coherence. I desperately wished Emma were there, in charge.

Suddenly, she appeared.

"You're back already?" I said.

"You've been in the ICU for over a week," she said. "But don't worry. You're getting better. Most of your labs have normalized. You'll be out of here soon." She'd been in touch with my doctors over email, I learned.

"You know how you offered to just be the doctor and I could just be the patient?" I asked. "I think that's maybe a good idea. I've been reading science and literature trying to find the right perspective, but I haven't found it."

"I'm not sure that's something you can find by reading about it," she replied.

Emma was now the captain of the s.h.i.+p, lending a sense of calm to the chaos of this hospitalization. T. S. Eliot sprang to mind:

Damyata: The boat responded

Gaily, to the hand expert with sail and oar The sea was calm, your heart would have responded Gaily, when invited, beating obedient To controlling hands I leaned back in my hospital bed and closed my eyes. As the darkness of delirium descended again, I finally relaxed.

- Lucy's due date came and went without labor, and I was finally scheduled to be discharged from the hospital. I had lost over forty pounds since being diagnosed, fifteen in the last week. I weighed as much as I had in eighth grade, though my hair had considerably thinned since those days, mostly in the past month. I was awake again, alert to the world, but withered. I could see my bones against my skin, a living X-ray. At home, simply holding my head up was tiring. Lifting a gla.s.s of water required both hands. Reading was out of the question.

Both sets of parents were in town to help. Two days after discharge, Lucy had her first contractions. She stayed home while my mother drove me to my follow-up appointment with Emma.

"Frustrated?" Emma asked.

"No."

"You should be. It's going to be a long recovery."

"Well, yes, okay. I am frustrated on the big picture. But on the day-by-day, I'm ready to get back to physical therapy and start recovering. I did it once, so it should be old hat, right?"

"Did you see your last scan?" she asked.

"No, I've kind of stopped looking."

"It looks good," she said. "The disease looks stable, maybe even slightly shrinking."

We talked through some of the coming logistics; chemotherapy would be on hold until I was stronger. Experimental trials wouldn't accept me in my current state, either. Treatment wasn't an option-not until I regained some strength. I leaned my head against the wall to support the flagging muscles of my neck. My thoughts were clouded. I needed that oracle to scry again, to gather secrets from birds or star charts, from mutant genes or Kaplan-Meier graphs.

"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 p.r.o.nounced 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 relations.h.i.+p 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 s.h.i.+vering. 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 pus.h.i.+ng: "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 succ.u.mbs 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 d.i.c.kinson 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 five 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 finis.h.i.+ng 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 appet.i.te we'd changed to eggs and toast, then just eggs, until even those became intolerable. Even his favorite smoothies, the gla.s.ses 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. .h.i.t 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, antic.i.p.ating 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 Sat.u.r.day 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 friends.h.i.+p, and one more gla.s.s of Ardbeg won't change that." He didn't write anything that day. The ma.n.u.script 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.