فصل 35

کتاب: آن هنگام که نفس هوا می شود / فصل 36

فصل 35

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35

Slowly the medical fog was clearing—at least now I had enough information to dive into the literature. While the numbers were fuzzy, having an EGFR mutation seemed to add around a year of life on average, with the potential for long-term survival; not having it suggested an 80 percent chance of death within two years. Clarifying the rest of my life was going to be a process.

The next day, Lucy and I went to the sperm bank, to preserve gametes and options. We had always planned to have kids at the end of my residency, but now…The cancer drugs would have an unknown effect on my sperm, so to keep a chance of having children, we’d have to freeze sperm before I started treatment. A young woman walked us through a variety of payment plans and options for storage and legal forms for ownership. On her desk were a multitude of colorful pamphlets about various social outings for young people with cancer: improv groups, a cappella groups, open-mike nights, and so on. I envied their happy faces, knowing that, statistically, they all probably had highly treatable forms of cancer, and reasonable life expectancies. Only 0.0012 percent of thirty-six-year-olds get lung cancer. Yes, all cancer patients are unlucky, but there’s cancer, and then there’s CANCER, and you have to be really unlucky to have the latter. When she asked us to specify what would happen to the sperm if one of us “were to die”—who would legally own them in the event of death—tears began rolling down Lucy’s face.

The word hope first appeared in English about a thousand years ago, denoting some combination of confidence and desire. But what I desired—life—was not what I was confident about—death. When I talked about hope, then, did I really mean “Leave some room for unfounded desire?” No. Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals, and confidence bounds. So did I mean “Leave some room for a statistically improbable but still plausible outcome—a survival just above the measured 95 percent confidence interval?” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

It occurred to me that my relationship with statistics changed as soon as I became one.

During my residency, I had sat with countless patients and families to discuss grim prognoses; it’s one of the most important jobs you have, as a physician. It’s easier when the patient is ninety-four, in the last stages of dementia, with a severe brain bleed. But for someone like me—a thirty-six-year-old given a diagnosis of terminal cancer—there aren’t really words.

The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s expectations are way out of the bounds of probability—someone expecting to live to 130, say, or someone thinking his benign skin spots are signs of imminent death—doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility. What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.

When we arrived home from the sperm bank, I got a phone call saying that I did, in fact, have a treatable mutation (EGFR). Chemo was off, thankfully, and Tarceva, a little white pill, became my treatment. I soon began to feel stronger. And even though I no longer really knew what it was, I felt it: a drop of hope. The fog surrounding my life rolled back another inch, and a sliver of blue sky peeked through. In the weeks that followed, my appetite returned. I put on a little weight. I developed the characteristic severe acne that correlates with a good response. Lucy had always loved my smooth skin, but now it was pockmarked and, with my blood thinners, constantly bleeding. Any part of me that identified with being handsome was slowly being erased—though, in fairness, I was happy to be uglier and alive. Lucy said she loved my skin just the same, acne and all, but while I knew that our identities derive not just from the brain, I was living its embodied nature. The man who loved hiking, camping, and running, who expressed his love through gigantic hugs, who threw his giggling niece high in the air—that was a man I no longer was. At best, I could aim to be him again.

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