A Season in Hell (5 page)

She came at teatime on a Wednesday. I poured us drinks and we sat in my study. She said she knew I was very sick. She did not use the word “terminal,” or mention death, but conveyed that she knew what I was facing. She knew, she said, that we were not close, we did not speak about our feelings. But then, who did? It was not
comme il faut
for people to talk about feelings. Consequently, people fail to say important things to each other before it is too late. She had seen this happen several times, and she did not want it to happen to us. She wanted to tell me now, while I was alive, that she loved me.

I imagined that professing loving friendship might be difficult for her. So I was especially grateful for her words, for her courage in uttering them and her generosity in making the effort. And that she felt loving toward me pleased me. I cared about her as well, I said. Her act was one of the more moving events of this period, and I will never forget it.

The next day, Gloria went with me to see my oncologist, and she interrogated him as if she were supervising my case. I enjoyed this, since I could not supervise it myself. In certain areas, I have a poor memory, or none at all. My vision is subject to this amnesia: I have often tried to memorize the shapes of leaves, so I can recognize trees, but my eye refuses to retain such information. Whereas if I hear a chord or melody or a line of poetry once, I remember its sound and rhythms without trying. I am amnesiac about figures and scientific facts. I knew I would never remember the details of my case and that Gloria would. She has helped many people with severe medical problems and remembers the specifics, the doctors’ names, the treatments used. And for the next months, she supervised my case, even calling the doctor in charge of the gastrointestinal department over the head of my oncologist to ask how I was faring.

That night, the coven met again. At the time, I accepted that these were regular meetings, but looking at my calendar now, I realize how extraordinary an effort my friends made to keep my spirits up throughout this period. That I didn’t perceive this then shows how deep my daze was. I went through the motions of living—talking, laughing, eating, moving about—but all the while my psyche was intently pulling leaves off a clover: life, death, life, death, life, death. Though in an isolating stupor, I was not alone. My friends seized me back, embraced me.

Esther came to the meeting with a notarized document invoking on my behalf the powers of her rabbinical ancestors, Aryeh Judah Leib, d. 1770, and Jacob Joseph Ha-Kohen, d. 1782, which descend to the tenth generation, down to Esther Masserman Broner; and of her ancestor the Tsadika, the Sainted One, the great-grandmother who comes in dreams and touches the afflicted, healing them. Gloria brought a beaded leather bag filled with sweet-smelling herbs—mainly sage, I think—which she had been given after suffering through a sweat lodge ceremony held partially on my behalf. Carol brought Zuni fetishes, little silver bears symbolizing strength, one for each of us. Strung on black silk, the fetishes made lovely necklaces, which, my friends said, they would wear whenever I was in the hospital. I was overwhelmed: child of a mother who provided thoughtful and sensitive foresight but not emotional support (requests for it aroused furious scorn), I wept at the thought that when I was frightened or in pain, they would be with me.

Barbara McKechnie, my unofficial daughter-in-law (she and Rob have been together for over ten years), found relaxation tapes to help me visualize. She bought boji stones, which the kids and I spent an afternoon concentrating on, trying to feel vibrations. Giggling with embarrassment or grimacing superciliously, we tried to place faith in what we knew was superstition yet wanted to believe. In time, with tremendous concentration (or self-delusion), I managed to feel some vibrations from the stones. I never achieved it again. Other people—acquaintances, strangers who had read my books and somehow knew I was sick—sent me gifts through the mail or through friends. I was inundated with crystals, sacred stones and rocks, necklaces and pins.

Rob bought me a juicer and made me drinks designed to build up my immune system. He would include carrot, apple, celery, kale, beets, or whatever, which I dutifully (and slowly) swallowed. He and Barbara kept after me, would not allow me to ignore their hideous doses of Nile-green goop.

The kids drove me to the Berkshires every weekend they were free. I was happiest, felt most hopeful, there. One weekend in late July, Rob and Barbara had invited some friends but did not tell me about it. Sunday afternoon, they seemed a bit distracted, especially Barbara. Only the next day did I figure out that she had not been sure they were coming and beyond that was worried about my reaction to them: she had invited people who had recovered from cancer, hoping they would ease my fears.

The guests were Roz and Fred Stein. Roz was a classmate of Barbara’s at Hunter; her husband, Fred, a former navy pilot, now worked for the FAA. Roz and Fred had met at a cancer therapy group. Fred, who had had testicular cancer, considered himself cured. He was lively and humorous and passionate about his work. Roz, whose breast cancer was more problematic (she had developed it as a young woman, and it had already recurred), was courageously going on with life, studying French with Barbara, going for a degree. She was witty but driven by dread.

I would grow fond of this couple, who in the next years became good friends of Rob and Barbara, but the effect of their first visit was not what Barbara had intended. Roz, a thin, nervous, handsome woman, had only recently stopped treatment; her cancer was again in remission, but she was obsessed with the idea that it would recur. She had gone on a macrobiotic diet, to which, though it was difficult to manage and not very palatable, she was committed. She could speak of little else but possible recurrence. At one point, I said, “You’re okay now, aren’t you? The cancer is gone?”

“Yes,” she said.

“Well, why don’t you try to concentrate on that for a while?” I suggested. “Think about being better, take pleasure in it, try to relax.”

She looked surprised, as if offered a path she didn’t know existed.

“Yeah,” she agreed. “I should.”

But she went on talking about recurrence as if it were inevitable. Some might say—I might have thought it myself—that by harping on recurrence she might provoke it: the anxiety alone could cause it, or so it seems to superstitious minds (and when it comes to cancer, most of us are superstitious). But knowing what I know now, I could as easily say that she knew her fate, her body knew, that she was trying to come to terms with a devastating knowledge.

Listening to her, I was growing more and more uncomfortable and wishing I could leave the room, when she announced suddenly, “Well, if it does come back, at least I have my port!”

I asked her what she was talking about.

“My port,” she repeated, fingering a spot on her neck. “They put a port in my neck. It’s a kind of permanent hole into a vein. They close it with plastic until they need it. Then they won’t have problems hooking up the IV the next time; they won’t be sticking and sticking me, unable to find a good vein. You know, your veins get blown after a while.”

I fled. I thought I was going to be ill. Such things were beyond my comprehension, and I wanted them to remain that way. I didn’t want to know about ports and IVs and blown veins. To calm my stomach and head, I had to go outdoors. I put my head on my hands, tried to erase from my mind everything I’d just heard.

Two years later, Roz died, as the dear soul had been trying to tell us she would.

The last weekend in July, Rob drove me to the Berkshires with Barbara and Jamie, for a last quiet time together, a time for eating well, relaxing, and enjoying the end of summer, the last time before I would be made sick—how sick we couldn’t guess. Carrying lunch and choosing a short walk from our hiking guidebook, we went for a hike in the mountains. But we got lost, and hours later were still wandering around in the Berkshire hills, until we stumbled onto a road marked “Appalachian Trail” and Jamie’s sense of direction kicked in. I lay down on the grass, unable to move, while Rob trotted on his long legs back to where Jamie swore (correctly) we had left the car. We are not a family that denies our emotions or represses conflict. We flare up at each other and fight, sometimes fiercely. But on this day, no one got upset or pissy; we laughed at ourselves and our plight; and by the end of the weekend, I felt as contented as someone in my situation could feel.

O
N TUESDAY, AUGUST 4
, I entered Sloan-Kettering for my first course of chemotherapy. S-K has a smooth, efficient admission procedure, managed by cheerful, high-spirited black women who take vital signs, give EKGs, and arrange for X-rays where needed. They welcome you as if to a luxury spa rather than a grotesque and painful new chapter of life, your first formal step toward death. They are friendly and agreeable but, at the same time, profoundly disengaged; such pleasant, disinterested guardians might admit you to a euthanasia salon or to the country club gates of heaven or hell.

It can be quicker, but usually takes an hour or more to get checked in and sent upstairs; once you are there, it can be quicker but sometimes takes hours before the nurse assigned to you finds you, takes another complete history, and gets you settled in a bed. On my first stay, I was sent to the eleventh floor, where the nurses are specially trained in administering chemotherapy. Whatever floor you are on, however, the S-K nurses are spectacular—superefficient, knowledgeable, warm, compassionate, and so agreeable that they make you believe they care about
you
. In this, they differ hugely from the nurses in other city hospitals I have sampled, especially St. Luke’s–Roosevelt, where the nurses and aides are often surly and resentful, or Bellevue, where (I hear) they are downright ugly. Nurses in country hospitals, like Fairview in the Berkshires, can be pleasant and even fun, but they are not as superlatively trained as S-K nurses.

Chemotherapy patients stay in hospital for six days on average at each visit, and they return every month for six months or more, so the nurses often get to know them. A nurse who tended me during my first visit stopped in frequently during later stays to say hello. Assigned elsewhere on the floor, she would make a special trip. “I heard you were back and hoped for a free minute so I could run down and say hello,” she would say, smiling. Some nurses remembered details of former stays; one asked, “Did you get your teddy bear?” (On a previous visit, Carol had brought me a white teddy bear, insisting that I learn how to cuddle it. I loved the bear but could not manage the cuddle, and because it did not fit into my bag, I forgot the bear when I left. My nurse tagged it and held it for me.) I have heard that S-K is reducing its nursing staff. I hope this is not true. The nurses are the only institutional factor that makes hospitalization and chemotherapy endurable; they provided my only pleasant memories of the hospital.

I entered with determined good spirits, feeling a certain triumph in having wrested a diagnosis from apathetic doctors and being able to start treatment. In addition, I had had to pass a test of kidney function in order to receive cisplatin. Hearing this of course immediately raised cisplatin to wonder drug status in my mind: I actively
wanted
to receive it and was elated when I inched through the required numbers.

Still, I had heard enough over the years about chemotherapy and radiation to know that they could be horrible experiences. A friend from past years, Barbara, a young doctor married to Barry, whom I’d known as a Harvard graduate student, had felt ill for some time before she drew her blood and sent it to the lab of the hospital where she worked. Though past childhood—she had an M.D., after all—she had childhood leukemia. Her long siege of treatment carried her several times to the edge of death, including a near-fatal coma, and caused her immeasurable suffering. She came through it with Barry’s loving care, but said afterward that if the leukemia recurred, she would not undergo the torture of treatment again. Elated as he was at her recovery (and she is still healthy and vivacious), Barry condemned chemotherapy as barbaric, like the treatment of mental patients in the eighteenth century. I had never forgotten this.

Another friend’s mother had had breast cancer and, while going through chemotherapy, needed a transfusion. New York Hospital gave her contaminated blood; she developed AIDS and died five years later. These were just two of the horrible anecdotes I knew, part of the collection we all carry around. They contributed to the subconscious content of my dread.

Rob went with me when I entered S-K. Although chemotherapy would not start until the next day, the nurses immediately hooked an IV line into a vein in my arm and began to hydrate me in preparation for the toxins—fluorouracil, or 5FU, and cisplatin, commonly called platinum. On my second day in the hospital, Wednesday, August 5, the nurses began the fluorouracil. Two nurses are required to administer chemotherapy—they check each step aloud together, one reading out the doctor’s order, the other reading out the words on the medicine bag, checking name, strength, dosage, and other factors. They hang plastic bags of chemicals and saline solution on the arms of a tall, skinny metal pole mounted on wheeled legs. Lines from the bags are fed into a blue box, which controls the rate at which the liquids are pumped and coordinates their passage. A line from the box runs into the IV needle in your vein.

I watched the nurses like a bird of prey, ready to swoop down on them. As politely as I could, I questioned them. Smiling, carefully using a nonaggressive tone, trying to tell them that I doubted them less than I feared death, I mentioned the two women in the newspapers the previous month, killed by mistaken chemotherapy doses at their hospitals. So—just checking—did they have the right chemical? the right dosage? They did not become defensive in the least, but—well-trained or humane—answered all my questions kindly, saying they understood. Over the years to come, many nurses would tell me they had had cancer themselves.