I knew she must have oat cell cancer, the type that develops in the lungs, which is fast-growing; whereas I had squamous cell cancer, a slower-growing type, found in organ linings. But it was also true that hers had been detected when it was tiny, whereas mine had metastasized widely before it was discovered. Yet mine had vanished, and hers had grown. I did not understand why.
Mine had also been in the lymph nodes, I said.
“Was yours like this?” she asked, taking my hand and laying it on the flesh above her clavicle, where someone as thin as Sibyl would normally have an indentation. Instead there was a hot huge swollen mass. I was appalled and must have shown it.
“Oh. No. I didn’t have that. Is it painful?” I asked, trying to hide my dismay.
“No,” she said tonelessly, gazing at no one.
“Sibyl,” I urged, “I don’t think it’s good to see your body as the enemy. Can you try to forgive it? Can you put yourself on the same side as your body? You and your body against the cancer?”
“I don’t know,” she sighed. “I think maybe I don’t really want to live.”
“Oh, please live, Sibyl,” I said, my eyes tearing. “We need you. Grace needs you.” When Grace lived in New York, the two women saw each other every day.
She smiled wanly into the distance, seeing her dead husband, her dead son—or so I imagined. In November she died.
1992
OCTOBER–NOVEMBER–DECEMBER
IN OCTOBER, MY CREATININE count was so low that they could not give me the cisplatin. This was a relief, but it also unnerved me. It meant that the first two doses had damaged my kidneys, perhaps irreparably. Nobody told me. That month, I met the radiologist Bruce Minsky, to whom I expressed my worries. He told me that only rarely can the whole protocol be given to any patient, and that the fluorouracil is if anything more potent than the more toxic drug. He insisted that radiation plus chemo should knock out any cancer that was left—he knew the tumor had disappeared. He also said I was a rarity, for in his many years of practice he had given radiation to only one or two people whose cancers had metastasized.
I did not know why my oncologist chose to break the pattern with me—he never spoke of it, and I forgot to ask him until 1997, when I ran across Bruce’s statement in my notes. It was as I had guessed. An article in a medical journal I had read stated that a few patients with esophageal cancer survived more than a year when they received what the article called extremely severe treatment. “Severe” meant simultaneous chemotherapy and radiation. Although the article described only people whose cancers had not metastasized, it was decided to treat me this way.
The decision was based on the facts of my cancer. Cancers are rated by T (tumor), N (node), and M (metastasis). Tumors are rated by size between 1 and 4: mine was called a 2–3. Lymph nodes affected are rated N–0 or N–1: my affected lymph nodes were at some distance from the tumor but within the range the radiation would reach, so they were considered 0. Metastases may be 0 or 1, again depending on distance from the primary site. The metastasis of my tumor (apart from the lymph nodes) was very close to the original site and would automatically be affected by radiation. I therefore had a chance of living a little longer without my body being subjected to excessive radiation.
My October hospital stay was normal, except I was endowed with more guests than usual, all bubbling with optimism at my good news. The first day, Charlotte came, and that night, the coven appeared, complete with magic wands, eagle feathers, and candles I worried might set off the S-K smoke detectors. As she did each time she came, Gloria massaged my feet, something she excelled at. It was wonderfully relaxing. My old college friend Perry came the same night; the next day, I was visited by my three kids, my sister and her companion, Fred Baron, and my father (who lives near my sister), whom I had not seen since the Christmas before. Though eighty-six, he looked much younger; he was (and is) busy (he works several days a week) and relatively content despite his loneliness for my mother, then six years gone. He embraced me but could not speak. He kept shaking his head from side to side. At some point he muttered that he, not I, should be the one dying. I remember hearing my children’s eighty-odd-year-old great-grandmother say the same thing when her son, their grandfather, died at fifty-nine. “It should have been me,” she moaned. But whatever they say—and mean, at least consciously—those with the life force to survive to great ages cling to life with every pulse and breath of their bodies. Ida Demarest French lived well into her nineties; my father is now ninety-two.
Rob came again the next afternoon, and so did Carol; Gloria Beckerman visited on Friday, followed by Rosita Sarnoff and Beth Sapery—long-standing acquaintances who became friends during this period—and Linsey Abrams. On Saturday, Esther returned, and Jamie. It was—dare I say it?—almost too much. I need a goodly amount of solitude just to feel like myself. Still, my notes show that I revised twelve chapters of Our Father that week. They must not have needed much revision.
On Sunday, I was released—on time this month—and went back to the Mayflower. That night, I went out to dinner with the kids and Barbara’s mother, Ruth, and her sister, Donna McKechnie, the great dancer. I remember we went to the Mackinac, a home-style restaurant on the West Side, chosen for its name—the McKechnies had lived in upper Michigan for years. I ordered macaroni and cheese, hoping I could eat something that soft; but I could not. I could only drink, and only water, apple juice, and tea. (I had been a coffee addict before; every morning I drank two cups of it made with the very best fresh-ground beans I could find, usually Celebes kalossi. Now coffee upset my insides; also anything with bubbles tortured my esophagus, and anything alcoholic burned it, as did acidic juices. At home, I often drank iced aloe vera and chamomile tea. I thought that if I survived, all this would vanish, but in fact it never did.) The mouth sores had already begun, on the fifth day after chemo this time. But this time, they lasted only a little over a week.
On Monday, I went to S-K for the first in a series of sessions to be measured for radiation. This lengthy process is undertaken to assure that the radiation will hit the affected area and only that area. Measured according to a formula the doctor has drawn up, you are marked with tiny tattoos that will guide the technicians when they move the machines around you.
My friends and children continued their faithful appearances; someone stayed with me every night—Rob and Barbara, Jamie, Carol, and Esther; Barbara Greenberg spent a day and night. I must have been feeling good, because my calendar is filled with movies, plays, lunches, and dinners I attended with a friend or my children. I saw Jim Silberman, my publisher; Florence Howe, a friend and the director of the Feminist Press; a new friend, the playwright Janet Neipris; and my old friend Herb Weiss, as well as the coven and my kids. Someone drove me up to visit my friend LeAnne Schreiber in Ancram; we went to the jewel-box Ancram Opera House, which Melina Herring had turned into a successful theatrical enterprise. Despite all this, my memory of that time is permeated with dread and malaise; I was without joy in life. But perhaps I am projecting backward.
On October 26, I underwent the last preparation for radiation at S-K, and the next day I had my first session. The entire business is permeated with a sense of high seriousness: the technicians who work on you are pleasant enough but profoundly aware of the perils of radiation. A patient cannot but be extremely aware of the care they take, the anxiety that accompanies their placement of the machine, and the ceremony surrounding their swift evacuation of the room before the machine is turned on. You cannot avoid the realization that you are undergoing a procedure that is perhaps even more life-threatening than chemotherapy.
I was to have thirty sessions of radiation, altogether 5,000 rads. For the first segment of each session, I was instructed to lie on my back, while the technicians focused the machine directly on my esophagus, then angled in on it from the right, then the left side. The machine was angled this way so that the ray, shaped by the radiologist to spoon up, would not hit my spine. The spine cannot take more
than 3,000 rads without severe damage. Then I was asked to turn over, and again the technicians moved the machine from one side to another. The whole process took about half an hour, and during it I felt nothing at all except anxiety—my own and that of the technicians. Indeed, when I first began to feel sick, I wondered if it was the atmosphere of that room that was affecting me. I thought it was all in my mind, because the radiation caused no sensation whatever. I felt nothing, or nothing I can describe: I felt bad but could not tell why. My experience was like that throughout the treatments—a creeping malaise that cannot be described because nothing in particular hurt, nor was there local debilitation beyond the burns. The next day, they started the chemo again.
I had told my oncologist that this arrangement worried me, that having radiation and chemotherapy at the same time would subject my body to too severe a punishment. In fact, the double whammy was the essential element of the treatment, but he never told me that. He pooh-poohed my anxiety, saying I was “a tough lady,” unaware that he was belittling me, both by dismissing my objection as if it were not serious and by calling me a “lady.” I did hypothesize (correctly) that the hardship of enduring chemo and radiation at the same time was intrinsic to the treatment, the element that made it “severe,” the term used in the literature. But no one took the time to explain that to me. I would have accepted it despite my qualms; indeed, it is what I told myself. But by now I had come to trust my body; it had given me true information when medical science could not. And it was telling me that the double whammy was going to be too much for me. My body was right.
Again, I had many visitors. Gloria, learning that I was not feeling well, sent a masseuse to the hospital to tone me up. The massage was wonderful, and I asked her to come again. Rob and Barbara came almost every day. We’d discuss how I felt and what they’d done that day or would be doing; then we sat gazing at one another. They looked worn and tired; I knew they were neglecting their lives for me—Barbara’s school-work, Rob’s exercise, their laundry and marketing, any leisure-time pleasures. I told them they did not have to come so often, but I’d been telling them that for months, uselessly. One day, I roused myself from my stuporous silence to say that it had been lovely to see them, that my eyes always drank them in thirstily, and that their visit had given me great pleasure, but now they should go home and get some rest.
“Huh?” Barbara asked, a little shocked. She does not always hear perfectly, and I tiredly began to repeat myself. But I did not make it all the way through before she began to laugh. “You know what I heard? I heard you say, ‘Go home, you look a mess!’”
“Okay! Go home, you look a mess,” I agreed, all of us laughing.
Afterward, that is what I would tell them whenever I felt they had put in enough time to calm their consciences. It became a family saying, a private joke.
On Sunday, I was released; Jamie came for me and we ate lunch, then I went home to rest. I returned to S-K every weekday after that for further radiation treatments, and every night someone came to stay with me—most often my children, Charlotte, or Esther. The mouth sores were not as severe as usual, and I was able to eat a bit, so had some energy. Linsey visited, and the two of us walked in Central Park for two and a half hours—of course, I had to take breaks. We had a wonderful conversation that gorgeous fall day: the temperature was mild, the trees still heavy and gorgeous with leaves, and all around us people walked and cycled in good humor. A few days later, I was happy to see my friend Lois Gould, back from Ireland on a visit.
But as time went on, visits became difficult because of my extreme enervation. When I was not on the radiation table, or getting to or from the hospital, I lay on the couch in my study. I neither wrote nor read. I think that much of the time I lay there in a partial daze, neither sleeping nor fully awake, on the edge of consciousness.
There are dates noted in my calendar—a gallery opening, a PEN meeting, a party, a talk by Christa Wolf, which I wanted very much to attend—but I attended none of them. I was too weak to do more than get myself to S-K every day, and even that was an effort. At some point, I asked Isabelle to accompany me, feeling unable even to manage the half-block walk from the hospital doors to First Avenue for a cab.
My sixty-third birthday arrived. Birthdays constitute a major holiday in our family, because we were all born around the same time: I on November 21, Jamie on November 22, and Rob on November 25. After my children were born, individual birthday parties became a thing of the past—although I’ve had some since, including the surprise party the kids gave for my fiftieth, featuring oysters and champagne. But even when the kids were little, they were feted together, like twins. Sometimes I gave extra parties in the summer, inventing a June birth date, to spread out the celebration (and gifts) a bit. But within the family, the traditional event is a Thanksgiving dinner followed by an orgy of gift opening (sometimes we celebrate Barbara’s birthday then too, instead of in August).
Happily, I had foreseen that I might feel ill by the time the birthdays came around, and had bought gifts in September and October. This year, Charlotte gave me a birthday dinner party. She wanted to please me, and perhaps she thought it would be my last, despite the good news of my CT scan. My condition at this time was not hopeful. She held the catered affair at my house, inviting my children, the coven, and her friend Miranda. The dinner looked delicious, but it was impossible for me to swallow; I had not been able to eat since the second week of radiation treatments. Since the radiation had also eradicated my appetite, I didn’t miss food. What was harder was that I could barely sit up straight at the dinner table or converse with pleasure.
Back at the hospital on Monday, I told Dr. Minsky that I felt I was dying and asked him to stop the treatments. I said they could resume later, when I’d regained some strength. He was a sweet man and didn’t pooh-pooh my fears, but he denied that I was in fact dying. He did not, however, ask why I thought I was dying. I took it mine was a common reaction. The radiation continued. I spent my days at S-K or on my couch. I no longer encouraged people to visit.
The kids arranged a Thanksgiving feast, inviting my father and Barbara’s sister Donna. I have little memory of it; I could not eat and was miserable sitting up and having to talk. But I tried.
Two days later, I had to return to S-K for my final course of chemo. I went in like someone on dead man’s walk—stolid, silent, uncomplaining, but sunk within myself as I approached the execution chamber. My demeanor could not have been more different from the determined cheer with which I entered the hospital the first time. This was probably predictable. But I didn’t think about the future then and was thinking about it even less now. Like most people, I thought about coping; many of us spend our whole lives this way, never considering more than getting through the next ordeal. We protect ourselves from our wretched experiences by not feeling them, by letting ourselves feel only a stoic determination to survive. Maybe this behavior works to our advantage in crises, but in many situations it stands between us and living our lives.
Enervation had turned me into a docile patient, helpless, caught, trapped in a system. I felt that the doctors were caught in it, too. The department, the hospital, the huge system, encompassed us all, and nothing could be done about it. They were killing me, and I was letting them. There was no way to stop it.
I was to have the usual six days of chemotherapy, and five more radiation treatments. But in the end I didn’t.
I was sitting in a wheelchair, waiting in a corridor of the radiology department for my appointment, when Bruce Minsky came up and said I was not to go in. He was stopping my treatments after all. I thought he had decided to take my advice.
“Why?” I asked.
“You have serious third-degree burns on your chest. I can’t risk exacerbating them.”
I had been using the recommended lotion on my chest, but lotions are useless against radiation burns. The only good thing about them was they didn’t hurt much. It was a painless form of death.
Bruc
e argued with me as if I had complained; he was really having a dialogue with himself, clearly worried that calling an early halt to treatment might vitiate my chances to recover. He said that I would miss only five treatments; I had fulfilled most of the recommended course. He insisted the radiation would have done its work. But as far as I was concerned, he could have been speaking into the wind. I was past caring.
As I look back now, the process surrounding radiation seems absurd, sort of like building air raid shelters against nuclear bombs or wearing a cheesecloth face mask when dealing with toxic waste. The doctor and the technicians worked so hard beforehand, making so many calculations; they calibrated treatments as if they really knew what dosage damages organs, bones, and skin; they tried to ensure that the X-ray would be directed at the correct spot. All this took hours, as I lay on the hard table under the machine, cold, hurting, and patient. And for what? The calibrations are a joke: radiation is lethal. It was hitting my esophagus, yes, but also my spine, my heart, my brain stem, and my lower jaw. And the effects of radiation continue until you die: they never stop. I am affected still, and I never know what will be hit next. In later years, as, one by one, parts of my body collapsed and I saw various S-K specialists, each of them would say: Well, you didn’t really have enough radiation/chemotherapy to cause this damage, but it seems to have (1) destroyed the cerebellar balance center in the brain, (2) damaged your heart, (3) destroyed your spinal column, (4) damaged your salivary glands, (5) destroyed the peripheral nerves in your feet or fingers, etc., etc.
I received Bruce’s news passively, but I was deeply relieved that the ordeal was over. I had a weak hope that in fact I would not die but might, once the radiation was over with, be able to regain some strength. I completed the chemo course, my last, and on Friday, December 4, was released. But that night, I ran a fever high enough for Urgent Care to require me to come in. I was hospitalized for a couple of days, then the fever fell and they released me again.
A Season in Hell Page 9