Thursday, September 17, 2015

we would tell you if we could


This time last year, we had just submitted our applications to residency. Everybody has their own experience; for me, it was a very bittersweet time. It was crazy stressful right before (I did my sub-internship, got letters of recommendation, took Step 2, and then did an away rotation)... but at the same time, there was a sense of calm because I had already done everything I could do by the time I submitted my application and was just waiting for my board exam result. I still have a hard time saying "I'm a doctor" when people ask me what I do. I end up coming up with an awkward "I work at X Hospital" and then it's really weird because they still don't know my occupation.

So I am pretty floored when people are able to eloquently express their thoughts on medicine and ethical issues we encounter, much less literal life and death. I read this article, "How Long Do I Have Left?" by Dr. Paul Kalanithi), my third year of medical school when I was doing my surgery rotation and it stuck with me in a way few articles do. 

AS soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic disease — no role for surgery,” and move on. But this scan was different: It was my own.
I have sat with countless patients and families to discuss grim prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics.

People react differently to hearing “Procedure X has a 70 percent chance of survival” and “Procedure Y has a 30 percent chance of death.” Phrased that way, people flock to Procedure X, even though the numbers are the same. When a close friend developed pancreatic cancer, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded them from looking up the statistics, saying five-year survival curves are at least five years out of date. Somehow I felt that the numbers alone were too dry, or that a physician’s daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.
These survival curves, called Kaplan-Meier curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time. For some diseases, the line looks like an airplane gently beginning its descent; for others, like a dive bomber. Physicians think a lot about these curves, their shape, and what they mean. In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate.
One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. I hoped she would see me as someone who both understood statistics and the medical reality of illness, that she would give me certainty, the straight dope. I could take it. She flatly refused: “No. Absolutely not.” She knew very well I could — and did — look up all the research on the topic. But lung cancer wasn’t my specialty, and she was a world expert. At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.
Now, instead of wondering why some patients persist in asking statistics questions, I began to wonder why physicians obfuscate when they have so much knowledge and experience. Initially when I saw my CT scan, I figured I had only a few months to live. The scan looked bad. I looked bad. I’d lost 30 pounds, developed excruciating back pain and felt more fatigued every day. My tests revealed severely low protein levels and low blood counts consistent with the body overwhelmed, failing in its basic drive to sustain itself.
For a few months, I’d suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn’t taken aback. In fact, there was a certain relief. The next steps were clear: Prepare to die. Cry. Tell my wife that she should remarry, and refinance the mortgage. Write overdue letters to dear friends. Yes, there were lots of things I had meant to do in life, but sometimes this happens: Nothing could be more obvious when your day’s work includes treating head trauma and brain cancer.
But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn’t I a ghost? No. But then how long did I have? Silence.
Of course, she could not stop my intense reading. Poring over studies, I kept trying to find the one that would tell me when my number would be up. The large general studies said that between 70 and 80 percent of lung cancer patients would die within two years. They did not allow for much hope. But then again, most of those patients were older and heavy smokers. Where was the study of nonsmoking 36-year-old neurosurgeons? Maybe my youth and health mattered? Or maybe my disease was found so late, had spread so far, and I was already so far gone that I was worse off than those 65-year-old smokers.
Many friends and family members provided anecdotes along the lines of my-friend’s-friend’s-mom’s-friend or my-uncle’s-barber’s-son’s-tennis-partner has this same kind of lung cancer and has been living for 10 years. Initially I wondered if all the stories referred to the same person, connected through the proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. Eventually, though, enough of those stories seeped in through the cracks of my studied realism.
And then my health began to improve, thanks to a pill that targets a specific genetic mutation tied to my cancer. I began to walk without a cane and to say things like, “Well, it’s pretty unlikely that I’ll be lucky enough to live for a decade, but it’s possible.” A tiny drop of hope.
In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory prefer to go to hell, and just be done with it? Was I supposed to be making funeral arrangements? Devoting myself to my wife, my parents, my brothers, my friends, my adorable niece? Writing the book I had always wanted to write? Or was I supposed to go back to negotiating my multiyear job offers?
The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”
I began to realize that coming face to face with my own mortality, in a sense, 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.
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, or someone thinking his benign skin spots are signs of impending death — doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility.
But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer.
What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.” And then, at some point, I was through.
I am now almost exactly eight months from my diagnosis. My strength has recovered substantially. In treatment, the cancer is retreating. I have gradually returned to work. I’m knocking the dust off scientific manuscripts. I’m writing more, seeing more, feeling more. Every morning at 5:30, as the alarm clock goes off, and my dead body awakes, my wife asleep next to me, I think again to myself: “I can’t go on.” And a minute later, I am in my scrubs, heading to the operating room, alive: “I’ll go on.”

Today I stumbled across the fact that this physician died this year. And I found another article he wrote, entitled Before I Go, which I also felt was very poignant.

In residency, there’s a saying: The days are long, but the years are short. In neurosurgical training, the day usually began a little before 6 a.m., and lasted until the operating was done, which depended, in part, on how quick you were in the OR.

A resident’s surgical skill is judged by his technique and his speed. You can’t be sloppy and you can’t be slow. From your first wound closure onward, spend too much time being precise and the scrub tech will announce, “Looks like we’ve got a plastic surgeon on our hands!” Or say: “I get your strategy — by the time you finish sewing the top half of the wound, the bottom will have healed on its own. Half the work — smart!” A chief resident will advise a junior: “Learn to be fast now — you can learn to be good later.” Everyone’s eyes are always on the clock. For the patient’s sake: How long has the patient been under anesthesia? During long procedures, nerves can get damaged, muscles can break down, even causing kidney failure. For everyone else’s sake: What time are we getting out of here tonight?

There are two strategies to cutting the time short, like the tortoise and the hare. The hare moves as fast as possible, hands a blur, instruments clattering, falling to the floor; the skin slips open like a curtain, the skull flap is on the tray before the bone dust settles. But the opening might need to be expanded a centimeter here or there because it’s not optimally placed. The tortoise proceeds deliberately, with no wasted movements, measuring twice, cutting once. No step of the operation needs revisiting; everything proceeds in orderly fashion. If the hare makes too many minor missteps and has to keep adjusting, the tortoise wins. If the tortoise spends too much time planning each step, the hare wins.

The funny thing about time in the OR, whether you frenetically race or steadily proceed, is that you have no sense of it passing. If boredom is, as Heidegger argued, the awareness of time passing, this is the opposite: The intense focus makes the arms of the clock seem arbitrarily placed. Two hours can feel like a minute. Once the final stitch is placed and the wound is dressed, normal time suddenly restarts. You can almost hear an audible whoosh. Then you start wondering: How long till the patient wakes up? How long till the next case gets started? How many patients do I need to see before then? What time will I get home tonight?

It’s not until the last case finishes that you feel the length of the day, the drag in your step. Those last few administrative tasks before leaving the hospital, however far post-meridian you stood, felt like anvils. Could they wait till tomorrow? No. A sigh, and Earth continued to rotate back toward the sun.
But the years did, as promised, fly by. Six years passed in a flash, but then, heading into chief residency, I developed a classic constellation of symptoms — weight loss, fevers, night sweats, unremitting back pain, cough — indicating a diagnosis quickly confirmed: metastatic lung cancer. The gears of time ground down. While able to limp through the end of residency on treatment, I relapsed, underwent chemo and endured a prolonged hospitalization.

I emerged from the hospital weakened, with thin limbs and thinned hair. Now unable to work, I was left at home to convalesce. Getting up from a chair or lifting a glass of water took concentration and effort. If time dilates when one moves at high speeds, does it contract when one moves barely at all? It must: The day shortened considerably. A full day’s activity might be a medical appointment, or a visit from a friend. The rest of the time was rest.

With little to distinguish one day from the next, time began to feel static. In English, we use the word time in different ways, “the time is 2:45” versus “I’m going through a tough time.” Time began to feel less like the ticking clock, and more like the state of being. Languor settled in. Focused in the OR, the position of the clock’s hands might seem arbitrary, but never meaningless. Now the time of day meant nothing, the day of the week scarcely more so.

Verb conjugation became muddled. Which was correct? “I am a neurosurgeon,” “I was a neurosurgeon,” “I had been a neurosurgeon before and will be again”? Graham Greene felt life was lived in the first 20 years and the remainder was just reflection. What tense was I living in? Had I proceeded, like a burned-out Greene character, beyond the present tense and into the past perfect? The future tense seemed vacant and, on others’ lips, jarring. I recently celebrated my 15th college reunion; it seemed rude to respond to parting promises from old friends, “We’ll see you at the 25th!” with “Probably not!”

Yet there is dynamism in our house. Our daughter was born days after I was released from the hospital. Week to week, she blossoms: a first grasp, a first smile, a first laugh. Her pediatrician regularly records her growth on charts, tick marks of her progress over time. A brightening newness surrounds her. As she sits in my lap smiling, enthralled by my tuneless singing, an incandescence lights the room.

Time for me is double-edged: Every day brings me further from the low of my last cancer relapse, but every day also brings me closer to the next cancer recurrence — and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. But even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder, some days I simply persist.

Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described, hold so little interest: a chasing after wind, indeed.
Yet one thing cannot be robbed of her futurity: my daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters — but what would they really say? I don’t know what this girl will be like when she is 15; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.

That message is simple: When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.

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