“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.