Usually when I had a patient with a strange condition, I consulted the relevant specialist and spent time reading about it. This seemed no different, but as I started reading about chemo, which included a whole variety of agents, and a raft of more modern novel treatments that targeted specific mutations, the sheer number of questions I had prevented any useful directed study. (Alexander Pope: “A little learning is a dangerous thing; / Drink deep, or taste not the Pierian spring.”) Without appropriate medical experience, I couldn’t place myself in this new world of information, couldn’t find my spot on the Kaplan-Meier curve. I waited, expectantly, for my clinic visit.
But mostly, I rested.
I sat, staring at a photo of Lucy and me from medical school, dancing and laughing; it was so sad, those two, planning a life together, unaware, never suspecting their own fragility. My friend Laurie had had a fiancé when she’d died in a car accident—was this any crueler?
My family engaged in a flurry of activity to transform my life from that of a doctor to that of a patient. We set up an account with a mail-order pharmacy, ordered a bed rail, and bought an ergonomic mattress to help alleviate the searing back pain. Our financial plan, which a few days before had banked on my income increasing sixfold in the next year, now looked precarious, and a variety of new financial instruments seemed necessary to protect Lucy. My father declared that these modifications were capitulations to the disease: I was going to beat this thing, I would somehow be cured. How often had I heard a patient’s family member make similar declarations? I never knew what to say to them then, and I didn’t know what to say to my father now.
What was the alternate story?
—
Two days later, Lucy and I met Emma in the clinic. My parents hovered in the waiting room. The medical assistant took my vitals. Emma and her nurse practitioner were remarkably punctual, and Emma pulled up a chair in front of me, to talk face-to-face, eye-to-eye.
“Hello again,” she said. “This is Alexis, my right hand.” She gestured to the NP, who sat at the computer taking notes. “I know there’s a lot to discuss, but first: How are you doing?”
“Okay, all things considered,” I said. “Enjoying my ‘vacation,’ I guess. How are you?”
“Oh, I’m okay.” She paused—patients don’t typically ask how their doctors are doing, but Emma was also a colleague. “I’m running the inpatient service this week, so you know how that is.” She smiled. Lucy and I did know. Outpatient specialists rotated on the inpatient service periodically, adding several hours of work in an already jam-packed day.
After more pleasantries, we settled into a comfortable discussion on the state of lung cancer research. There were two paths forward, she said. The traditional method was chemotherapy, which generically targeted rapidly dividing cells—primarily cancer cells but also cells in your bone marrow, hair follicles, intestines, and so forth. Emma reviewed the data and options, lecturing as if to another doctor—but again with the exception of any mention of Kaplan-Meier survival curves. Newer therapies had been developed, however, targeting specific molecular defects in the cancer itself. I had heard rumors of such efforts—it had long been a holy grail in cancer work—and was surprised to learn how much progress had been made. These treatments, it seemed, had led to long-term survival in “some” patients.
“Most of your tests are back,” Emma said. “You have a PI3K mutation, but no one’s sure what that means yet. The test for the most common mutation in patients like you, EGFR, is still pending. I’m betting that’s what you have, and if so, there’s a pill called Tarceva that you can take instead of chemotherapy. That result should be back tomorrow, Friday, but you’re sick enough that I’ve set you up for chemo starting Monday in case the EGFR test is negative.”
I immediately felt a kinship. This was exactly how I approached neurosurgery: have a plan A, B, and C at all times.
“With chemo, our main decision will be carboplatin versus cisplatin. In isolated studies, head-to-head, carboplatin is better tolerated. Cisplatin has potentially better results but much worse toxicity, especially for the nerves, though all the data is old, and there’s no direct comparison within our modern chemo regimens. Do you have any thoughts?”
“I’m less worried about protecting my hands for surgery,” I said. “There’s a lot I can do with my life. If I lose my hands, I can find another job, or not work, or something.”
She paused. “Let me ask this: Is surgery important to you? Is it something you want to do?”
“Well, yes, I’ve spent almost a third of my life preparing for it.”
“Okay, then I’m going to suggest we stick with the carboplatin. I don’t think it will change survival, and I do think it could dramatically change your quality of life. Do you have any other questions?”
She seemed clear that this was the way to go, and I was happy to follow. Maybe, I began to let myself believe, performing surgery again was a possibility. I felt myself relax a little.
“Can I start smoking?” I joked.
Lucy laughed, and Emma rolled her eyes.
“No. Any serious questions?”
“The Kaplan-Meier—”
“We’re not discussing that,” she said.
I didn’t understand her resistance. After all, I was a doctor familiar with these statistics. I could look them up myself…so that’s what I would have to do.
“Okay,” I said, “then I think everything is pretty clear. We’ll hear from you tomorrow about the EGFR results. If yes, then we’ll start a pill, Tarceva. If no, then we start chemotherapy Monday.”
“Right. The other thing I want you to know is this: I am your doctor now. Any problem you have, from primary care to whatever, you come to us first.”
Again, I felt a pang of kinship.
“Thanks,” I said. “And good luck on the inpatient wards.”
She left the room, only to pop her head back in a second later. “Feel free to say no to this, but there are some lung cancer fundraisers who would love to meet you. Don’t answer now—think about it, and let Alexis know if you might be interested. Don’t do anything you don’t want to.”
As we left, Lucy remarked, “She’s great. She’s a good fit for you. Although…” She smiled. “I think she likes you.”
“And?”
“Well, there’s that study that says doctors do a worse job prognosticating for patients they’re personally invested in.”
“On our list of things to worry about,” I said, with a laugh, “I think that’s in the bottom quartile.”
I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
—