“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 bump 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 practitioner, 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 Saturday, 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 assumed 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 god, 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 cocktail would take four and a half hours to infuse. I passed 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 passed, 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 Saturday, 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.