Personal File -- December 1996
Magic TimeObservations of a cancer casualty
by Michael Davitt Bell
FOR four years I've been battling (as they always say) cancer, and now I've lost. I'm told I have the proverbial six months to live -- which I might, with luck and additional chemotherapy, be able to stretch to a year. The sarcoma that appeared in my right thigh in the summer of 1992, that first metastasized in my lung in 1994 and cost me a kidney a year later, has now spread all through my lungs. Beyond doubt I'm dying. Nothing unusual here, of course -- except that I find I not only am reconciled to my fate but also have achieved a strange kind of happiness that's new in my experience.
In 1979 I had another cancer, a melanoma that was removed in a simple outpatient procedure and did not recur. But by the end of my first year of treatment for the sarcoma, with chemotherapy, radiation, surgery to remove the original tumor, more chemotherapy, I had descended into a depression so severe that all sense of self was gone, all desire, except for a persistent, repetitive series of affect-free fantasies of specific and detailed ways I might kill myself.
I doubt that I can account fully for the level of happiness, even euphoria, I've now reached, three years later and in the face of much worse news. But some of it comes, I'm sure, from the fact that since the cancer's appearance in my lung in the summer of 1994 revealed that the original treatment hadn't eliminated the disease, and thus the statistical odds of my surviving were close to nil, I have determined to be open and honest with other people about my disease and my prognosis. I think this has also allowed me to be open and honest with myself.
My relationships with friends and family -- above all with my two daughters, now in their twenties, whose mother and I divorced when they were small -- have thus taken on an emotional openness and intensity almost inconceivable for someone who, like me, grew up in an upper-middle-class WASP family in the Midwest, a family in which the word "love" was never spoken or heard except, perhaps, to express admiration for an object or article of clothing ("I just love the way that sweater looks on you!"). So I find I'm not overcome with remorse or anger, or with terror of the fate awaiting me; instead I'm cherishing each moment, each mundane experience I have left. This is, for me, a magic time.
My own experience may be quite different from the experience of others in similar circumstances, or of those who love and care for them. But the general point here, a lesson I can share, is that for me over the past four years, after the traumas of treatment and of confronting my own death, the experience of dying of cancer may have been fundamentally about etiquette, about how one deals socially with people who don't have cancer and don't, for excellent reasons, really want to talk about it. Doctors, famously, need to keep professionally distant from their dying patients, and some even see such patients as a reproach, a token of failure. Friends and family don't want to seem intrusive or insensitive, and we are inevitably an unwelcome reminder of their own mortality. Nor are we who are about to die innocent of evasions and avoidance. I'd even guess that the popularity of cancer support groups stems from the chance not only to talk about common fears and experiences but also to be in a setting where this particular problem of etiquette, of figuring out how to talk to people who don't have cancer, who aren't dying, is for the moment suspended. Between the living and the dying a kind of wall seems to persist, a barrier of fear, shame, and perhaps most of all embarrassment.
I remember reading, back in the 1970s, a sociological study of paranoid behavior. Instead of analyzing the supposed paranoids for clinical symptoms, the researchers interviewed them and the people with whom they were routinely in contact: family, friends, fellow workers. What became evident was that when the supposed paranoids entered a room, these others actually did feel embarrassed and change the subject; they had been talking about the supposed paranoids behind their backs. So it is, perhaps, with the problem of etiquette for the dying.
Nevertheless, the wall can be breached; lines of communication can be kept open. As I say, I believe that my determination to keep breaching the wall accounts for my success in achieving acceptance and happiness in the face of my impending death. And this determination has extended even to strangers. People I've never met before -- people I run into in stores, or at roadside rest stops where I'm walking my dog -- ask what happened to the leg that was permanently stiffened by the removal of the original tumor. I don't put them off with "surgery" or "I hurt it." Briefly, I tell them what happened -- describing the tumor, the surgery, sometimes even mentioning my current prognosis -- and they're interested, concerned. Mindless pleasantry is transformed into actual conversation.
"Thanks for asking," I say to them, and I mean it.
"Hey," they reply. "Good luck!"
Worse things could happen.
To speak of manners in the context of cancer and dying may seem jarring, even insincere, but it shouldn't. For as the great novelists of manners, the Jane Austens and the Henry Jameses, all knew, the etiquette of communication and miscommunication, the comedy of understanding and misunderstanding, is not only deeply fascinating and entertaining but also profoundly significant. These novelists knew that once the misunderstandings have been cleared up, just before the ending, the possibility of love and of true communication has come to exist. And much more love, more interesting love, is possible than if no difficulties and misunderstandings had occurred in the first place. After all, you can't have the satisfying resolution of the ending if you don't start with conflict and crisis.
My oncologist read an earlier version of this essay, and we discussed it over lunch. Although he liked it for the most part, he had one suggestion. "Don't you think," he said, "you should say more about your doctors?"
All right. With one exception my doctors have been wonderful. Again and again they've saved my life, or at least prolonged it, and I've been lucky to have prescribed for me the latest, least invasive procedures. Drastic as the treatment of my sarcoma seemed, it could have been much worse. Ten years ago the recommended procedure would have been to remove my leg at the hip.
Why, then, had I said so little about my doctors? What my oncologist may not have understood is how small a part doctors play in our experience of having cancer. We wait in hallways or antechambers for our appointments, often for a long time, and when at last we see our doctors, the consultations are understandably brief. In the hospital, where doctors govern everything we do, our direct experience of them is even more marginal: we're patients twenty-four hours a day, and our doctors' appearances on their rounds seem a matter of nanoseconds, something we might miss entirely if we were to blink. What's weirdest of all in this experience is the stark contrast between our doctors' pervasive power and their absence. Perhaps this is like the believer's experience of the deity.
Early in my treatment for sarcoma, in 1993, PBS broadcast Bill Moyers's series Healing and the Mind -- programs about alternative, holistic methods for treating life-threatening diseases. Moyers avoided, I thought, one of the less agreeable implications of holistic approaches to illness: if you can help yourself get better by developing a more positive attitude, then it's your fault if you're not getting better, or are in fact dying.
Healing and the Mind did touch on another standard implication of the mind-body approach. At the heart of this approach is a familiar indictment of American medicine: that our doctors are educated to treat diseases rather than people, taught to deal with us impersonally, as carriers of symptoms, rather than holistically, as suffering individuals. This complaint is in some measure justified, to be sure. But as early as during my first hospital stay for chemotherapy I realized that this may be exactly what we want our doctors to do. We have far more at stake than they do in keeping everything but the clinical, technical details at bay. In such circumstances we may want to think of ourselves as sets of symptoms, as meat that's being fixed, rather than as people whose very souls are being sucked into our sickness. And then, while our doctors are doing their best to cure us, we blame them for our own denial.
I'm imagining myself here as a stand-up comic, or maybe a stand-up-while-I-can-still-stand (or while-you-can-still-stand-me) comic. I can't see if you're really out there -- it's so dark, and I've got these stage lights in my eyes, and my jokes are getting no response, not a sound, not even the clink of ice in a glass, an idle cough or two.
"Hey!" I want to shout into the darkness, the silence. "Hey! Help me out! I'm dying up here!"
I know I'm being flippant. What's more important, I know why. We who are about to die (or at least this has been true in my case) sometimes focus on our relations with others in order to deny the most difficult and terrifying aspect of what I might call terminal etiquette: keeping open our lines of love and communication with ourselves. This is what I lost utterly during my terrible first year of treatment; I lost touch with who I was, with all sense of desire or purpose, and thus lost, as well, all sense of my connection to others, even my daughters.
From November through early February of that year I lived alone in an apartment in Boston, where I had had to move for treatment. I underwent two rounds of chemotherapy, in November and December, and then six weeks of radiation, beginning immediately after Christmas. I remember that late in January my younger daughter, who was then still in college, came up to stay for a week on her break between semesters. One night, as we played gin rummy before going to bed, I tried desperately to hide from her the shaking in my hand that left me barely able to hold my cards. I was that scared of the empty and meaningless hours looming in my future, of the sleepless night awaiting me, of the fact that I had no idea whatever of how I would spend the coming day. And this happened every night, with or without visitors. During the days I was numb, seeing everything as if from a great distance. I had lost the ability to cry. Although I had bought a portable stereo to console me in my exile, I had pretty much stopped listening to music. I tried, but I simply couldn't remember my life before the beginning of all this horror, what it had been like to be the person I had been. And I couldn't imagine ever returning to that life once my treatment was completed; I would never again be that person, or any person; nor would I be able to rediscover the emotional basis of my love for my friends or my daughters.
The popular name of this wall is Denial, and even to think of breaching it, of peering over at the dark and tangled wilderness on the other side, teeming with creatures of unspeakable disproportion, seems almost more than anyone should have to bear. Nevertheless, and often to the horror of my friends, I chose to read Nuland's book, to read the chapters devoted to exactly how one dies of cancer. If I was to love myself, to accept myself sufficiently to maintain my open love for those most dear to me, I just had to know.
Nuland describes, in considerable detail, the physical processes of dying from the most common forms of disease and trauma. He wants to dispel, he writes, the "scenarios" we compose about death -- notably "the longed-for ideal of 'death with dignity.'" A story he tells at the outset identifies both his main purpose and his principal target audience -- people whose loved ones are dying. The story is about a woman he had almost certainly cured of breast cancer, whose mother had then died of the same disease. The daughter had been horrified by the process. "Dr. Nuland," she had protested in despair, "there was no dignity in my mother's death!" Nuland reports that he offered her comfort by telling her, from his own expert perspective, that this was not unusual, that he had not often seen much dignity in the process by which we die.
Nuland's purpose seems clear enough. People about to go through the death of a loved one will be cured of their despair, much as all those mothers who turned to Dr. Spock in the 1950s were cured of their potential guilt: by being assured that what terrifies them is perfectly "normal." (Nuland's other great fifties touch -- recalling to me my admiration as a teenager for James Dean in Rebel Without a Cause -- is his extended description of cancer cells as "the juvenile delinquents of cellular society," as a "mob of maladjusted adolescents raging against the society from which it sprang." Could I start identifying with this disease?)
Fine, I thought, as I read Nuland's story of the woman horrified by her mother's hideous death; she's reassured. But what's in this story for his other potential audience: people who are themselves about to die, like me? Are we supposed to feel better about the agony we anticipate -- the loss of independence and bodily function, the onset of disintegration and pain? Are we supposed to feel better about all of this because it's normal?
And why all the detail? "When we are familiar with the patterns of the illness that afflicts us," Nuland answers, "we disarm our imaginings." So I read about the details of cancer, and how it finally kills you, as I sat on the deck of my country house on a radiant afternoon in early summer, with my yellow Labrador retriever lying at my side.
"Unrestrained and patternless growth," I read,
enables a cancer to force its way into nearby vital structures to engulf them, prevent their functioning, and choke off their vitality. By this means, and by destroying the organs from whose stem cells they are made, the masses of cancer cells kill the gradually sickening person after feasting on the nutrients that were to have sustained him.My dog shifted herself out of the sunlight and back into the slowly moving shadow cast by the deck umbrella, and I read about how tumors expand so rapidly that they exhaust the available blood supply. "The result," Nuland explains,
is that a portion of an enlarging tumor may die, literally of malnutrition and oxygen lack. It is for this reason that cancers tend to ulcerate and bleed, sometimes producing thick, slimy deposits of necrotic tissue (from the Greek nekrosis, meaning "becoming dead") within their centers or at the periphery. . . . This is precisely why the ancients referred to karkinoma as the "stinking death."A hummingbird hovered above the bright-red feeder I had filled with sugar solution, and then darted for the woods across my lawn. The air was almost completely still. "Pneumonia and abscesses," I read,
along with urinary and other infections, are frequently the immediate causes of death of cancer patients, and sepsis is their common terminal event. The profound weakness of severe cachexia [nutritional depletion] does not permit effective coughing and respiration, increasing the chances of pneumonia and inhalation of vomitus. The final hours are sometimes accompanied by those deep, gurgling respirations that are one of the forms of the death rattle.Whew! I guess my response should have been What a relief! As if my un-disarmed imaginings could ever have come up with anything this bad. "Stinking death" indeed! I thought of Lauren Bacall's account, in the autobiography she published years ago, of what Bogart smelled like as he neared death, with so much of the tissue in his body already dead and rotting. I thought of the young widow who told me, shortly after the melanoma had been removed from my back, that by the time her husband had finally died from the spread of his melanoma, he'd lost half his body weight -- and something like 80 percent of what remained had been cancer or necrotic tissue.
But Nuland is right, of course: it's essential to know just what to expect -- or at least this has turned out to be true for me. And he's right, too, about the most urgent reason for this. "Real control," he observes, "requires one's own knowledge about the ways of sickness and death."
I'm not convinced that we can reach such knowledge without direct experience, but for me, at all events, it has seemed crucial to stay in touch with some concrete, if imaginary, pre-vision of my near and inevitable future. And for me the key word is "control." I want the story of my dying, however painful and disgusting it may be, to be my story, my "scenario," at least as much as possible. After all, it's the only story I have left.
Illustration by Kamil Vojnar