When Breath Becomes Air (16 page)

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 embarrassing phone call with his boss, revealing his error. He was working the night shift. Residency education regulations had forced most programs to adopt shift work. And along with shift work comes a kind of shiftiness, 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 hello 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 Ship? 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 muffle, 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 ship, 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 glass 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 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.”