A Season in Hell (12 page)

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.

Bruce 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.

One day, feeling improved, I gave my situation some thought. So far, the tumor had not returned. I had finished chemotherapy and radiation, and although I felt terrible, chances were I would feel better eventually. Surely I would be better in a month, I thought. I decided to concentrate on getting better. I made a
decision
to get better. For the first time in months, I sat down at my desk and picked up the telephone. I called my travel agent and asked her to make reservations at a luxury hotel in Key West for early January: I would take the children down there for a lovely rest and some sun. They deserved a treat after their ordeal. Then I called to arrange for my car to be transported to Florida for the season.

I noted these arrangements in my calendar. They are the only marks for the month. Apart from that one day, I was too ill to keep records, too ill even to think of writing anything down. There were days when I did not even get out of bed, something I had avoided all during chemotherapy, although I was told that some people take to their beds during treatment. I had always gotten up, dressed, even put on eye makeup. I had sat at dinner tables, whether or not I could eat.

No more. I still dressed, but I did little else. I rarely bothered to put on my wig; I’d grown used to my bald head. Unable to eat, I had no reason to sit at a table. I didn’t read or watch television. I did listen to music and the radio, especially
Performance Today
on WNYC. I slept and simply lay there, in bed or on my couch, empty of head and heart. I was supposed to speak at a conference at Hofstra University in November or December, and at the 92nd Street Y in December, but I had to cancel both. The only times I left the house were when Urgent Care demanded I come in because of my fever.

Between December 4 (the day I was released after my last chemo course) and December 10 or 11, I was in and out of Urgent Care and Memorial Sloan-Kettering Hospital several times, with fever and low white cell counts. On about the twelfth of the month, the doctors said I had to stay in the hospital until they got the fever down. Sepsis, manifested by fever, frequently kills chemotherapy patients, who lack enough white cells to fight infection.

I saw a host of doctors in this period; most were infectious disease specialists trying to find medications for stubborn problems like mine. (This specialty seems to attract especially pleasant people.) They tried one antibiotic after another, but none seemed to work for more than a day or two. The fever went up and down, but it never went away.

In all this time, my primary oncologist did not visit me. I had not seen him since my outpatient appointment on November 10. I do not know if he was even aware I was sick. He rarely made hospital rounds, because he was often away during his supposed month on duty. He traveled a great deal, giving speeches at medical conferences, no doubt pertaining to his work on a cancer cure. I would have liked to see him, because I felt I needed to consult someone who had a larger view of my illness than simply my fever, someone who could evaluate my overall condition. I did not know who else to turn to.

My biggest problem in this period was starvation. I could not eat and could drink only water, weak tea, apple juice, and aloe vera. But I was being hydrated through my IV line. When I was home, I could occasionally get some soup down (my kids and my friends made soups for me, out of thoughtfulness and love), and I drank the vegetable juices the kids prepared. And while the kids brought me food I could keep in the hospital refrigerator and heat in the microwave of the floor kitchen, I lacked the energy to do so. Even if I got something down, it wasn’t enough. I had lost about thirty pounds and smilingly told the doctors I was starving; they smiled back. Jamie bought me a pin to attach to my velour tops; it said, in great big letters, I WANT FOOD! But no one suggested that I be fed through my IV line; nor did I suggest it. I was waiting for the doctors to do so. My weakness seems to have affected my brain. Maybe the doctors weren’t aware that my esophagus was ulcerated from radiation. No one was watching over my whole person. Not even me.

When the fever dipped, I would feel instantly better and immediately imagine that I would continue to feel better, that I was on my way to recovery. In such a state, I determined to attend the coven’s equinox celebration and had Isabelle bring me a black velvet pantsuit, black heels, and jewelry. I cajoled the doctors into giving me permission to leave the hospital that evening, and the nice guy who finally gave it said, “Okay, if you want to. But I wouldn’t think you’d be able to.” He was right. As the time to dress approached, I realized that I could not even face getting up and putting on my fancy clothes, much less going outside in the cold weather, walking to First Avenue, and hailing a cab.