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.
At our first of several biweekly appointments, Emma’s and my discussion tended from the medical (“How’s the rash?”) to the more existential. The traditional cancer narrative – that one ought to recede, spend time with family, and settle one’s toes in the peat – was one option.
“Many people, once diagnosed, quit work entirely,” she said. “Others focus on it heavily. Either way is okay.”
“I had mapped out this whole forty-year career for myself – the first twenty as a surgeon-scientist, the last twenty as a writer. But now that I am likely well into my last twenty years, I don’t know which career I should be pursuing.”
“Well, I can’t tell you that,” she said. “I can only say that you can get back to surgery if you want, but you have to figure out what’s most important to you.”
“If I had some sense of how much time I have left, it’d be easier. If I had two years, I’d write. If I had ten, I’d get back to surgery and science.”
“You know I can’t give you a number.”
Yes, I knew. It was up to me, to quote her oft-repeated refrain, to find my values. Part of me felt this was a cop-out: okay, fine, I never gave out specific numbers to patients, either, but didn’t I always have a sense of how the patient would do? How else did I make life-and-death decisions?
Then I recalled the times I had been wrong: the time I had counselled a family to withdraw life support for their son, only for the parents to appear two years later, showing me a YouTube video of him playing piano, and delivering cupcakes in thanks for saving his life.
My oncology appointments were the most important of many new appointments with a variety of healthcare providers, but they weren’t the only ones. At Lucy’s insistence, we began seeing a couples therapist who specialised in cancer patients. Sitting in her windowless office, in side-by-side armchairs, Lucy and I detailed the ways in which our lives, present and future, had been fractured by my diagnosis, and the pain of knowing and not knowing the future, the difficulty in planning, the necessity of being there for each other.
In truth, cancer had helped save our marriage.
“Well, you two are coping with this better than any couple I’ve seen,” the therapist said at the end of our first session. “I’m not sure I have any advice for you.”
I laughed as we walked out—at least I was excelling at something again. The years of ministering to terminally ill patients had borne some fruit! I turned to Lucy, expecting to see a smile; instead, she was shaking her head.
“Don’t you get it?” she said, taking my hand in hers. “If we’re the best at this, that means it doesn’t get better than this.”
If the weight of mortality does not grow lighter, does it at least get more familiar?
Once I had been diagnosed with a terminal illness, I began to view the world through two perspectives; I was starting to see death as both doctor and patient. As a doctor, I knew not to declare “Cancer is a battle I’m going to win!” or ask “Why me?” (Answer: Why not me?) I knew a lot about medical care, complications, and treatment algorithms. I quickly learned from my oncologist and my own study that stage IV lung cancer today was a disease whose story might be changing, like AIDS in the late 1980s: still a rapidly fatal illness but with emerging therapies that were, for the first time, providing years of life.
While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn’t help me as a patient. It didn’t tell Lucy and me whether we should go ahead and have a child, or what it meant to nurture a new life while mine faded. Nor did it tell me whether to fight for my career, to reclaim the ambitions I had single-mindedly pursued for so long, but without the surety of the time to complete them.
Like my own patients, I had to face my mortality and try to understand what made my life worth living—and I needed Emma’s help to do so. Torn between being a doctor and being a patient, delving into medical science and turning back to literature for answers, I struggled, while facing my own death, to rebuild my old life—or perhaps find a new one.
Excerpted with permission from When Breath Becomes Air, Paul Kalanithi, Bodley Head.