Part 6 (1/2)

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.