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. –Paul Kalanithi, How Long Have I Got Left? The New York Times, Jan 24, 2014
Two months ago, I read the paragraph quoted above, written by a neurosurgeon who’d discovered that he had lung cancer and possibly only a few months to live. It ends on a hopeful note: his illness is responding well to treatment, well enough for him to get back to work, and there’s a distinct possibility he might live for much longer than he initially thought.
Just days later, my oncologist broke the news that my cancer had returned. It had returned, moreover, with a startling ferocity: my scans revealed a skeleton riddled with tumours. I’d be back on chemotherapy, she said quietly, but the purpose of treatment this time would be to control or shrink the disease rather than get rid of it. Over the following weeks we talked about all the possible types of treatment and the statistical likelihood of each of them succeeding. A letter arrived in the mail from the hospital, as it always does, summarising my discussion with the doctors. “A cure,” it said, “is not realistic.”
A gentle way of saying what I already knew acutely: I am going to die.
Nobody knows exactly when, of course, but one can make an educated guess. Based on the current statistical evidence, the treatment I receive will offer me a reprieve that could last anywhere from a few months to a year, after which my disease is likely to progress and at some point become untreatable. At the moment, I feel as if I’ll be lucky to still be alive in two years’ time.
Given that I opened with the tale of the doctor who found that the prognosis he developed for himself, with all his years of training and experience, was mistakenly pessimistic, you might think that his story should give me more hope. Unlike him, though, the cancer I have is so uncommon that research into it is poorly funded, and even running a clinical trial becomes difficult due to a paucity of patients. It is so uncommon that I didn’t see it mentioned once in a 600-page “biography” of cancer. The chances of a new life-saving or life-extending drug for it appearing on the market within the next couple of years or so are very slim.
Still, maybe I am underestimating the years I have left; maybe I’ll die three years from now instead of two, or four instead of three, or five instead of four. But I don’t know how much difference that makes in the end. Paul Kalanithi describes himself as young and still having lots of things he means to do, and he’s thirty-six, with a successful career and family of his own. I was twenty-two and a lost graduate student when I was first diagnosed: I am left not so much with unfinished business as business that hasn’t even started. I will still seek happiness, and experience moments of pleasure as well as pain, but all of it will necessarily be in the short-term, and relatively fleeting; I don’t expect to ever know the long-term struggle and satisfaction of building a life of one’s own as an adult.
So no matter when death chooses to come, it will be too soon.
I still read of miracles, particularly on internet message boards and in comment threads, about people who were told they had X months to live after being diagnosed with stage five disease and yet here they are hale and hearty after ten years and all because they ingested extract of turmeric or infusion of gurdyroot because doctors don’t know everything and Big Pharma only wants to stuff you with expensive, nasty chemicals and anything is possible you just have to think positive and get out there and find your own cure! In my weaker moments I find myself wanting to believe them, and have to force myself to remember that not only is there no clinical evidence that any of this stuff is curative, there is also a strong self-selection bias here: those for whom neither turmeric nor positive thinking nor anything else worked aren’t around to tell us that.
Occasionally, during bouts of 3 a.m. googling, I’ll come across a miracle that sounds legitimate. Unorthodox treatment helps 9-year-old beat cancer proclaims an article from April 2013, going on to describe how a child with the same cancer I have was responding unexpectedly well to an unusual combination of existing drugs, drugs that I am familiar with. I briefly get excited, and look up his name to find out more. Rare bone cancer claims 10-year-old is the first result I get, from December 2013. I imagine the lives of that child’s family, as they moved along an arc of desperation followed by hope followed by despair that stretched all the way from spring to winter. I don’t read any further.
To me, a cure is not realistic is the same thing as a cure is not possible, but I know that it could also, at a stretch, mean a cure is not impossible. Why, then, am I so quick to dismiss the latter interpretation? Because the line between living in hope and living in denial is a very fine one, and I don’t want to live in denial. I can’t bring myself to shut out the reality of my disease, which is that it kills those who have it, just because I don’t like it.
At the same time, I’ve found a way to be hopeful, as you will see.
Kalanithi’s op-ed led me to a book called How We Die: Reflections on Life’s Final Chapter by Shep Nuland, who was also a surgeon as well as a writer and professor of bioethics. Nuland writes in meticulous, moving and sometimes excruciating detail about the various ways in which human beings die, but mixes in poetry and philosophy and vivid metaphor:
Knowing no rules, cancer is amoral. Knowing no purpose other than to destroy life, cancer is immoral. A cluster of malignant cells is a disorganized autonomous mob of maladjusted adolescents, raging against the society from which it sprang. It is a street gang intent on mayhem…There comes a point at which home turf is not enough-offshoots of the gang take wing, invade other communities, and, emboldened by their unresisted depredations, wreak havoc on the entire commonwealth of the body. But in the end, there is no victory for cancer. When it kills its victim, it kills itself. A cancer is born with a death wish.
So I will triumph over cancer, then, one way or another. A small consolation.
There is also a grisly section devoted to how cancer gradually eats away at the body’s ability to sustain life in a patient’s final days, so I know exactly what to expect now; but more important is the chapter succeeding it, called Hope and the Cancer Patient.
Mine is not the first voice to suggest that as patients, as families, and even as doctors, we need to find hope in other ways, more realistic ways, than in the pursuit of elusive and danger-filled cures. In the case of advanced disease, whether cancer or some other determined killer, hope should be redefined. Some of my sickest patients have taught me of the varieties of hope that can come when death is certain. I wish I could report that there were many such people, but there have, in fact, been few. Almost everyone seems to want to take a chance with the slim statistics that oncologists give to patients with advanced disease. Usually, they suffer for it, they lay waste their last months for it, and they die anyway, having magnified the burdens they and those who love them must carry to their final moments. Though everyone may yearn for a tranquil death, the basic instinct to stay alive remains a powerful force.
He tells the story of one man, Bob DeMatteis, who in his final year calmly reconciled himself to the fact of his death and did what was most important to him, which was to celebrate Christmas in the most Dickensian way he could, as he had done for years (his favourite author was Dickens, and his favourite book was A Christmas Carol):
…In the short time left to him, Bob was able to see a form of hope that was his alone. It was the hope that he would be Bob DeMatteis to his last breath, and that he would be remembered for the way he had lived.
This is much harder than it looks. Cancer has a way of taking over your life and your identity. At the hospital, I am just one among many bald, grey-faced young people, shuffling along with an IV pole strung to my arm, and it’s easy to forget that we weren’t always like this. I am often taken aback by how difficult it is for me to recall what it’s like to not have cancer, even though close to twenty-two of my almost twenty-four years were spent in perfect health. So to accept that your illness is a part of you but live as if it isn’t the most significant part, to stop it from becoming the defining feature of your existence, requires enormous mental strength. But it can be done. And that’s what gives me hope.
Both Kalanithi and Nuland (who suffered through several years of crippling depression) developed ways of dealing with their predicaments using language. Kalanithi:
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.
Nuland’s took the even pithier, more colourful form of Aw, fuck it. Both these phrases have proved useful to me, and I found a third one in the final paragraphs of Nuland’s book:
I have seen too much of death to ignore the overwhelming odds that it will not occur as I wish it. Like most people, I will probably suffer with the physical and emotional distress that accompany many mortal illnesses, and like most people I will probably compound the pained uncertainty of my last months by the further agony of indecision-to continue or to give in, to be treated aggressively or to be comforted, to struggle for the possibility of more time or to call it a day and a life-these are the two sides of the mirror into which we look when afflicted by those illnesses that have the power to kill. The side in which we choose to see ourselves reflected during the last days should reveal an image that is tranquil in its decision, but even that is not to be counted on…
All of this makes more precious each hour of those we have been given; it demands that life must be useful and rewarding. If by our work and pleasure, our triumphs and failures, each of us is contributing to an evolving process of continuity not only of our species but of the entire balance of nature, the dignity we create in the time allotted to us becomes a continuum with the dignity we achieve by the altruism of accepting the necessity of death…The dignity that we seek in dying must be found in the dignity with which we have lived our lives. Ars moriendi is ars vivendi: the art of dying is the art of living. The honesty and grace of the years of life that are ending is the real measure of how we die. It is not in the last weeks or days that we compose the message that will be remembered, but in all the decades that preceded them. Who has lived in dignity, dies in dignity.
Ars moriendi is ars vivendi. The art of dying is the art of living.