Now, sick and probably dying, I watched the entire structure being shattered by greed and mendacity. A President who is still revered broke the air traffic controllers’ union, undermining the already demoralized labor movement; he adopted economic policies that enriched even more the top ten percent of the population and led to an extraordinary situation—hordes of homeless people sleeping on freezing streets in every major city in the country. So common has this sight become that we no longer remember it did not always bruise our eyes. The Presidents who followed lazily let the new right-wing thrust—which, I am convinced, arose because of television coverage of the 1968 Democratic Convention, focusing on women, people in wheelchairs, and blacks—continue. The humane experiment had lasted only as long as my puny lifetime.
All these elements combined to create a negative force, a downward-pulling energy. Late at night, in bed, I would sigh, thinking I would not mind leaving this world. It would be a relief to die and no longer feel the corrosive rage aroused by injustice. I was drawn toward death, toward rest, the end of pain, the silencing of a consciousness more sorrowful than pleasant.
This feeling became more powerful later, when I was sicker. But at this point, I could let myself down into this despair and fury as if it were a cold lake, and emerge from it without struggle. I was sustained by my children—Jamie and Rob and his Barbara—and my friends, especially Charlotte Sheedy, the coven, and Barbara Greenberg. It was a shock to me, who had always lived in proud independence, unwilling but also unable to ask for help, to discover how much I needed them: their company, their sweet words, their concerned expressions.
When I was first diagnosed, Charlotte sent me a dozen or so books on cancer, most by megalomaniacal doctors who imply (even as they deny) that they have magical powers to cure cancer. They describe miraculous cures, attributing them to their patients but emphasizing their own openness and understanding direction. I believed in the cures, but not in the doctors. Some books were written by patients who claimed to have cured themselves of cancer without medical treatment. I believed they had good luck. I did not believe people could just decide to cure themselves.
Now that we knew what kind of cancer I had, Charlotte checked with her medical contacts and sent me xeroxed reports on esophageal cancer from medical journals. These professional essays utterly lacked the optimism of the books: dealing only with nonmetastasized esophageal cancer, they reported that treated with strong chemotherapy combined with intense radiation, one of five people survived for five years. Most died within a year. The odds were not great even if the cancer had not metastasized: mine had, and widely, forming tumors outside the esophagus and in two lymph nodes.
Someone else sent me an article from, I believe, an old New York Times. It described Susan Sontag’s courageous handling of a breast cancer that, when she developed it, was considered terminal. She went to Paris for a severe treatment no American hospital of the time—decades earlier—was willing to risk. I do not now recall whether it involved radiation as well as chemotherapy, but it made Sontag very ill, and it saved her life. That, I thought, was what I wanted to happen to me. But even as I wished it, I knew I was thinking wishfully.
Being a lung specialist, Dr. Strong could not handle my case, alas, but he arranged for me to see an oncologist in the gastrointestinal service. The night before my appointment, Barbara Greenberg flew down from Boston. I thought she was coming just from affection, which touched me; I did not suspect any other motivation. She had called regularly, and I had kept her up on my condition, but unlike my other friends, she knew I was doomed. She was married to a surgeon who frequently treated cancer and knew that no one survived metastasized esophageal cancer. Barbara came because she wanted to be with me when I saw the doctor who would preside over my dying, and to hold my hand after I heard the news.
The night she arrived, we went out for dinner, Barbara and I and the coven. We ate at Jezebel’s, owned by an African-American woman, who has draped the restaurant with antique lace and linens and who serves a luscious Midtown version of soul food. Over dinner, we held a coven meeting, complete with eagle feathers, light-up plastic wand, crystals, and incantations. The other diners paid us not the slightest heed; as far as we noticed, not a single head turned. New York is indeed wonderful.
The next day, Barbara G., Rob, and Jamie trooped with me into the fourth-floor clinic at Sloan-Kettering. The designers of this hospital took pains to make it attractive and comfortable, even in its private areas. Nevertheless, entering it never fails to upset me, because the first-floor lobby is always crowded. An unending stream of people—cancer patients and the family or friends of cancer patients—continually stream through its pleasant corridors: old people in wheelchairs, lovely men and women in their thirties, youngsters with bald heads, babies in their mothers’ arms; just looking around can make you weep. I am old enough that for me the word “cancer” is equivalent to a death sentence; I had not kept up with the fact that this is no longer the case. For instance, my nurses assured me that most babies with cancer are cured.
In time, I got in the habit of not looking at people, so as to keep myself calm. Unlike most hospitals, S-K has attractive, comfortable waiting rooms, and its halls are filled with art. For initiates (patients and their visitors), there is a large room at roof level with comfortable couches, a piano, a pool table, worktables and materials for arts and crafts, and access to a garden. Familiar with hospitals as I have become, I judge them by waiting and emergency rooms as well as by their doctors and nurses. A hospital must deal not just with patients but with long-suffering families and friends. And these spaces are far better at Sloan-Kettering than at St. Luke’s–Roosevelt or Mount Sinai, the other New York City hospitals I know. The emergency room at St. Luke’s is truly shocking, crowded and shabby, especially given its pretentious new lobby, a huge empty space designed to intimidate. Mount Sinai is shocking because its lobby, too, is, like the building itself (whose architect aspired to assert himself so forcefully over the city that he ruined the East Side skyline), pretentious and overbearing, while its actual working spaces—operating, waiting, and X-ray rooms—are cramped, ugly, and uncomfortable.
But on this day, July 23, 1992, I was not aware of any of this; I was shocked into silence by the host of people on every floor, waiting, waiting, all caught in the same epidemic as I.
Sloan-Kettering is a research hospital; each department is devoted to a particular system of the body and has its own staff of physicians, called “attendings.” The highest-ranking doctors, they take monthly turns supervising patient care. The gastrointestinal service had five attendings, each “on duty” one month out of five. (Before I was finished, a sixth doctor joined the service.) Each month, one attending was responsible for morning rounds (in which he was followed by a group of younger physicians, still learning), visits to all the patients being treated by the department. At the end of his stretch, that doctor was freed to do research for the next four months. I think all attendings see outpatients two mornings a week; but the system may have changed somewhat since I was there. The young doctors assist the attendings, not only following them on rounds but helping in the research projects, and they gain status from the association with eminence. I have never seen more craven servility than some of these assistants exhibited. I blamed not the youngsters but the arrogant creatures they served. The assistants who dared to talk to me on their own were the pleasantest doctors in the hospital. Humanity had not yet been beaten out of them. But judging from their elders, it would be.
There are many other ranks of doctors at S-K; an entire set works long hours, staffing the hospital at night and on weekends and holidays. Perhaps they are called residents: I am not sure of their formal title. Some older doctors in practice elsewhere seemed to have S-K privileges; I saw them only in Urgent Care (the ER), tending patients who came in with emergencies. Many appeared to be surgeons who practiced in New Jersey or Long Island.
The oncologist I was assigned was not arrogant. He tr
eated his assistant (a warm young woman I would never see again, and missed) kindly and with respect. But he had some characteristics that made him less than an ideal doctor. He was extremely negative. This characteristic took the aspect of dourness or depression, which is understandable in a field in which most patients die (he told me once that his department receives eleven thousand new patients every year, and of those, over ten thousand die). Still, this trait is not especially helpful to patients. Part of his problem could have been his youth. He may not have been as young in years as he looked, but I’d guess he was emotionally immature. Utterly self-involved, and as innocent about this as a child, he had the boyish brightness of a kid in the back of the classroom waving his arm, hoping to be called on so he can recite the lesson faster and more accurately than anybody else. He still saw life as a matter of winning and losing, and he’d probably never failed at anything in his life. Knowledgeable medically and (I am sure) well-intentioned, he could not extend himself outside himself, and so could not connect with patients. He was most likable when he was accompanied by a nurse. At his best working with warm, giving women, he relaxed with them, and they liked him. The nurses’ affection suggested to me that he was a good sort (nurses absolutely know whether doctors are medically good and whether they are decent human beings). Their ease with him humanized him to patients, while the nurses gave them human comfort.
He had a difficult job: we were strangers, and he had to tell me I was going to be dead in a year. His solution to this challenge was to speak in an expressionless voice with an expressionless face. He told me I had terminal cancer, that there was no hope for cure or remission, that I was not to think of that. What they could do for me was—they hoped—to shrink the cancer and keep me comfortable. I had a year; for six months of it, they would give me chemotherapy and radiation if my kidney function allowed it and if I could tolerate the side effects, which could include nausea, hearing loss, loss of sensation in fingers and toes, and extreme fatigue, among other things. If I wondered why I should have treatment when my chances were so bad, there was always a small percentage who did well, and it was important that I think I’d be among them.
What was he saying? Hope, but not too much? Hope, but don’t expect a cure? What was I to hope for, then? He emphasized that mental attitude was crucial to anything they did. I spoke up, assuring him that I had strong powers of concentration and that I wanted to hope…. But he wasn’t listening; he was talking over me. There was no hope for a cure, he said, but they were not trying just to keep me alive in the hospital; they wanted more for me. I couldn’t understand what more they could be aiming for, if cure was impossible. I said my swallowing had become easier over the last few days and that I attributed it to my visualization and the coven ceremonies. I also was taking a series of herbal cures and vitamins suggested by friends.
Keep on visualizing, he said, but stop taking herbal medicines and teas and confusing vitamins. Eagle feathers? he wondered vaguely…. Chemotherapy would start at the beginning of August. Then he was gone, without a goodbye or a handshake.
I heard what the man said. I understood it. I cried uncontrollably for a long time, with Barbara stroking my back and murmuring sadly, my children hovering silently in the next room, where they had gone while he examined me. It took me a long time to calm down. Eventually, I suggested we look for someplace to have lunch; I was not hungry, but surely they were. We found an Ottomanelli’s, and they ate as I stared at the pizza I had ordered. We talked, searching for cheer, as people will.
I don’t recall the conversation. But I know that by the time we left the restaurant, I had silently summoned up the conclusions of the medical articles on esophageal cancer that I had read and twisted them to my purposes. One in five people treated with extreme measures survive nonmetastasized esophageal cancer for five years. I decided that the figures applied to me too (despite my metastases): Sloan-Kettering used the extreme measures required. Although none of the oncologists I had met had offered me real hope and most were negative about my chances, I decided I had one chance out of five. I simply made it up.
By the time I got home that afternoon, I had utterly obliterated the word “terminal” from my memory. I never used it in describing my illness to people, and indeed, when doctors I encountered a year or two later acted astonished at meeting someone who had survived esophageal cancer, I did not understand their shock. I had managed to forget totally that my cancer had been terminal; indeed, I had never absorbed the fact that no one survives metastasized esophageal cancer. I canceled this fact for myself and for everyone I spoke to. In fierce blind insistence, I decided I had a chance to survive and would count on that. I might as well be part of the one as part of the other four, I told everyone, deeding them all my willful delusion. Within a couple of days, I had changed the figure to one out of four. By then, I had also repressed any sense that I was deluding myself.
This was strange, because I am and have been all my life a person who demands the truth, no matter how unpleasant it may be. I speak it and want to hear it spoken, even at the risk of being confrontational. I have contempt for wishful thinking and comforting illusions, and I despise people who are too timorous to face hard truths. Yet here I was, lying to myself and everyone else.
In fact, hope makes the ordeal of cancer treatment a little more bearable; it provides a basis for feeling a bit of cheer each day. No one who is diagnosed as having cancer fails to be aware that death may be imminent, is indeed more probable than survival; people expect to die even if their doctors offer hope: few cancer patients are overly optimistic, no matter how macho their talk. I remember how suspicious and pessimistic Sibyl Claiborne had looked as she reported her doctor’s positive diagnosis. But my doctors were not positive. I suppose doctors deny hope because they do not want to be accused of offering false hope (or sued for it, perhaps), but I think they should refrain from smashing what hope a patient may stubbornly cling to.
Throughout my treatment for cancer, I not only maintained false hope but denied the reality I had briefly been aware of, the terminal nature of my disease. At no time was I unaware that I would probably die within the year—I had revised my will even before I saw the new oncologist. My mind refused to budge very far, to entertain thoughts of the future beyond a few hours thence. Yet at the same time I felt insistently that I had a chance to live. In this strange state, which may be familiar to others who have suffered a life-threatening illness, contradictory feelings and facts hang together in an easy harmony, like pleasingly dissonant chords in a melancholy music. Either outcome—life or death—seems possible and, after a short time, acceptable.
I had also made a living will and delivered it to my attorney. Having given the subject considerable thought, I knew exactly how I felt about extreme medical treatment. Ever since I turned fifty, I had had conversations with two close friends who were also tough-minded women, Charlotte and Barbara, about the disposition of our bodies should we fall ill in the future. All three of us had read horror stories about people hooked up to respirators or other machines and kept alive artificially for months or years. Indeed, my own mother had had an aneurysm, come to after surgery and stood up, then immediately keeled over in a coma, in which she lingered on a respirator, and with tubes in various parts of her body, for over a month. In that time, she blew up horribly because her kidneys were not functioning properly; I would look at her puffed-up body and weep, knowing how she would have hated being seen like that. And nothing helped. After five weeks, she died.
Charlotte, Barbara, and I all felt the same way about such endings: we did not want them. I knew, knew absolutely, that I did not want to be hooked up to machines, did not want to be kept alive artificially, did not want to suffer the indignity of tubes in my veins, blowing up to twice my size, lying like a lump in a bed, while technicians and coldhearted doctors peered down at me, a piece of meat in a butcher’s window. I was a strong supporter of Dr. Kevorkian and of the Hemlock Society, believing that one’s end should be
in one’s own hands. I would do much to avoid humiliation, as I knew Charlotte would. The two of us made a pact that if either of us needed help in ending her life, the other would provide the means. I asked Barbara for such help as well, although we made no mutual pact.
My living will stipulated that almost no intervention was acceptable. If I was not going to recover, I wanted no tubes, no special measures, no machines. I told my children about the will, and where it was, and what it said. But I also told them that my mother, who had dreaded humiliation above all things, nevertheless would not have wanted to be removed from the machines keeping her alive. Though hating her state, she would have clung to life as long as she could. I explained to the kids that I did not want measures taken if there was no hope, but I wanted to hold on to life if there was. Still, I was fairly sure that extreme measures would not be necessary: I felt certain I would never have to suffer such things.
Despite my facade of equilibrium, I was dreading chemotherapy; the first week of August loomed. But my psyche kept playing strange tricks, elevating me to heights of serenity or bliss directly opposite to the depths of my terror. The week before I was to enter the hospital, happiness blossomed like a drop of water on watercolor paint, beautifully spreading and staining the surface of the time.
A Season in Hell Page 3
