A Season in Hell (7 page)

Another bad thing about all hospitals is the food, which is not only tasteless but poor in quality. Cooking for so massive a number of people may inevitably cause tastelessness, but I do not understand why hospitals buy unhealthful foods. The importance of nourishment to health is a matter of common knowledge, so why do trained dietitians continue to buy Jell-O, plastic-like ice creams and desserts, cheap, gluey white bread, the castoffs of the vegetable markets, tasteless, tough cuts of meat? Then they cook the food into oblivion, removing any nourishment it might have had. This seems to be true in all hospitals.

As it turned out, for me it did not matter how good or bad the food was: I could not eat. The kids and my friends brought me good soups from home or a restaurant, casseroles I could heat in the hospital microwave, lovely pastries, whatever I said I felt I could eat. Carol trekked across the city to a bakery that sold madeleines (which I could and did eat); Jamie prepared a casserole of macaroni and cheese the way I had made it for them when they were children. Rob was always searching out a soup or pastry I could get down. But I could not eat much, and as time went on, I could not eat at all. The smell of the chemicals on that floor has never left my body’s memory, and since my chemo treatments, I have never been able to eat in a hospital, any hospital.

Chemotherapy has profound and lasting negative psychological effects on many people. I feel upset each time I pass Memorial Sloan-Kettering Hospital on York Avenue. Some people become nauseated passing the hospital where they were treated. My oncologist told me about a patient who became nauseated each time he laid eyes on his oncologist. One summer, on holiday, walking along a Paris street, he experienced sudden extreme nausea. Turning to his wife in bewilderment, he asked why he should feel this here now. Then, glancing back down the street, he recognized a man who had passed him a few seconds earlier, whom he had not noted then—his oncologist.

On Monday, August 10, a week after entering, I was released from the hospital. My assistant, Isabelle de Cordier, fetched me and carried home my laptop and the bags of stuff I had somehow accumulated in six days. Go home, live normally, the doctors said. I was high: I had survived chemotherapy without serious damage! I had been through it and survived. I was home. I went upstairs and showered (hospital showers are ugly, uncomfortable, and unpleasant) and put on fresh clothes.

But once the euphoria of being home had passed, I did not feel well. I tried to work. I had written a little over a chapter during my hospital stay; I had another five chapters to write to finish the first draft of the book. But I could not write; nothing came. My children came to make dinner for me that evening and gathered around me when they saw how weak I was. They scolded: I was not drinking enough, I was dehydrated, I wasn’t eating. But I couldn’t drink or eat: I could barely swallow, I didn’t know why. Was I having a psychological reaction, after six days of not eating? With the kids hovering beside me, I sat at the kitchen table, concentrating, trying to get water down. But it did not want to go. After another day of this, I called my oncologist, who told me to come in to Urgent Care. From there, on Thursday, I was sent back to the hospital.

Urgent Care, S-K’s emergency ward, open only to S-K patients, was to become familiar to me over the next months, as I suffered from one or another “side effect.” The day of my diagnosis, my oncologist had mentioned some side effects of chemo, and new chemo patients get an information packet containing a statement about patient rights and printed cards listing the possible side effects of each chemical—a perfunctory way of meeting doctors’ obligations. But nothing can prepare you for what is to come. The simple phrases—mouth sores, mild nausea, diarrhea, loss of hearing, neuropathy, possible hair loss, temporary decrease in blood cell counts, and others—cannot convey the physical reality of what happens to your body. Nor does anyone inform you that these effects are often permanent. If you live, you live damaged.

Still, what would we do if they told us the horrible truth? That cancer treatments damage the body less only than cancer itself, and that much of the damage is lasting, every oncologist knows. Simply to treat cancer means they must violate the primary tenet of their code: First, do no harm. But the harm varies hugely from patient to patient and with kinds of cancer. Radiation of the breast, say, affects the body less severely than radiation of the esophagus (which hits the spine and heart). I think the age of the patient is also pertinent: judging by my friends and acquaintances (among whom breast cancer is epidemic), treatment of breast cancer is nowadays tremendously successful in older women (and men), less so in younger ones.

S-K’s Urgent Care is not like emergency rooms in other hospitals: because it is limited to S-K patients, it is smaller and less chaotic than most ERs. No one can enter it from the street. Patients are admitted and cared for with dispatch, as a rule. But like other emergency rooms, it offers little privacy.

I have spent time in five different ERs but have never seen one that in the least resembled the TV version in degree of privacy and space or in noisily catastrophic events. I have never heard doors exploding open or seen a team of people frantically pushing in a trolley. When serious emergencies do occur, every care is taken to keep them quiet. And the governing ethos of the ER is not, as in television presentations, a matter of dominance—the brilliant doctor performing brilliantly, the noisy rebel upsetting the routine, the urgency of new cases mustering the entire staff. ERs are quiet and feel calm, if busy, whatever the reality. The main characteristics of ER nurses and aides are cooperation and amiability. The doctors vary in degree of indifference and disinterest (although in a small hospital like Fairview, the ER doctors tend to be lovely). Moreover, there are usually only one or two doctors in an ER, which is mainly peopled by nurses and orderlies.

In Mount Sinai’s ER, when I was there, the central figure was a black male nurse who was especially solicitous of his patients and seemingly connected in a friendly way to every other nurse and orderly in the room. Beds were lined up against two walls, facing each other, with a walkway about a bed’s length wide between them. I was in that ER for hours, and because it was so crowded, I lost my cubicle whenever I was sent to X-ray or other labs. I was left in the walkway between the beds then, and I could see the activity at both rows of bedsides. Curtains were rarely drawn. At one point, a guard moved through the room, quietly asking all guests to leave. Later, I asked the nurse why that had been done. Were there visiting hours in the ER? I had never seen that before. No, he replied, but they had had an extremely urgent case at the other end of the room and needed to keep all extraneous people out, needed to concentrate on the patient. The room was not that large, and I had been there during the time this case was treated, yet I had not been aware of it.

At S-K, each patient, when summoned, is placed in a bed in a narrow cubicle formed by pink curtains. You can always hear (and, when the curtains are left open, see) what is going on with the three or four patients near you. The S-K hospital hierarchy is naked in this miniature world. Any white male you see (you see few) is a doctor (I never saw a female doctor in Urgent Care); any white female is a nurse. Black females are rare at S-K (I encountered only one black nurse in my visits there), but black men are common, walking in and out collecting wastes and delivering supplies.

The nurses in S-K’s Urgent Care are even more spectacular than the chemotherapy nurses. They are not permitted to diagnose, but of course they do, silently; like nurses in other emergency wards, they know who needs care quickly and do what they are permitted to do. They perform the many required procedures with swift efficiency and intelligence. You may wait a long time for a doctor, but you feel safe once you are in the nurses’ hands.

One or two of the doctors I saw in Urgent Care during the six months I used it were pleasant people who treated patients like human beings, but most were peremptory and dismissive. I also saw doctors who were not S-K attendings but men with private practices elsewhere and privileges at S-K, who cared only for their own patients. They made the S-K doctors look like models of knowledge and professionalism. Almost all of these visiting doctors were horrifying to watch and listen to, loud, bullying, arrogant, and impatient. I found this unforgivable, considering that their patients were not only sick but frightened by whatever crisis had brought them in.

On my first visit, I was lying next to a heavyset man, older than I, who also had esophageal cancer. His doctor, a surgeon from New Jersey, had operated on him and he was left in horrible condition. He could swallow food, but it did not remain in his stomach. The loud-voiced, bullying doctor asked him questions, but his answers were vague. He kept saying, “My wife knows, my wife keeps track.” He was vague even about his medications. Finally, the doctor ordered the wife to come in and give him the information he needed. Deeply involved with her husband’s treatment, she had everything at the tip of her tongue: when he had pain and how long it had lasted, what he had eaten and when, and when it came back up. She knew about his bowel movements and urination, his medications and sleep patterns. The doctor declared that another operation was called for. The patient and his wife accepted this submissively.

Another time, a handsome man in his early forties lay sleeping in the end bed. A beautiful woman sat beside him silently, watching. She often bent forward to lean over him—perhaps he had moved, or an eyelid had fluttered. During the many hours I spent in the ward that day, no doctor approached them, and the devoted woman never moved. No words were necessary to demonstrate her love. She still stands in my memory as a kind of symbol, patience on a monument.

One afternoon, a nurse silently pushed in a young man in a wheelchair, with a basin in his lap. The nurses scurried to ready a bed for him, but for a few minutes he sat visible in the center of the room. No one saw him but Rob and me (the other patients’ curtains had all been drawn). I drew my breath in sharply at the sight of him: he was skeletally thin and as white as the albino boy in my first-grade class. He was bald—probably from chemotherapy—and his large, egg-shaped head was sickeningly white. As I watched, he opened his mouth and bent over the basin, spilling perhaps a pint of blood into a basin already half full of blood. He was young, in his twenties, probably, and dying. He was one of the most terrible sights I’d ever seen; his suffering—which I could not begin to fathom—was palpable, although he spoke no word and made no sound, past complaint.

In my many visits to Urgent Care, all the patients around me were men; I don’t know why. But I was glad for the exposure, because the difference between them and the women with whom I shared rooms upstairs was striking: men usually had women to care for them, whereas few of my roommates had men visit them, and none had a man taking care of her. Women were visited mainly by other women; women were the caretakers for patients of both sexes, although I never saw a woman take care of another woman in the detailed, careful way the wife of the man with esophageal cancer cared for him. Except for the boy in the wheelchair, all the men I saw in Urgent Care were accompanied by wives and sometimes sisters and daughters as well. An elderly Chinese man came with an entourage of women. When he was about to be discharged, two nurses patiently tried to instruct the women on how to take care of him once they got home. Through considerable language difficulty, they told her they could not keep him from getting up to go to the toilet—he was probably a proud man. One nurse talked with them for a long time, attempting to dredge up ways to salve his pride while keeping him off his feet.

A few of my roommates had husbands, but none took responsibility for their wives like my friend Barry. One man came every night with his dinner steaming and fragrant in a paper bag, and sat there eating, gazing at his wife. I was touched by this; I thought: How sweet; he’s used to eating with her and probably can’t bear eating without her. I went on thinking this and smiling at the man each time he entered the room, until the night her weak, weary voice protested:

“Lou, did you have to bring chili in here? You know it makes me sick to smell it. All these spicy dishes make me sick.” He said nothing; he finished eating. I wondered if his dinners made her sick every night. After they left, I thought: I wouldn’t be surprised. Because on the day she was to depart, she was smiling and happy. By the time he arrived, she had put on her street clothes and came out of the bathroom wearing a big smile and a brownish-blond wig.

“What do you think?” she asked, her eyes bright, eager for a compliment.

“Looks like hell,” he growled.

So much for sweetness, I thought. With someone like that around you, your chances of recovering were very low. I blessed myself again that a former lover who had left me had done so long enough ago that I was over it by the time I got sick. I knew that if we had still been together, I would have been deserted as soon as I was diagnosed, and that that would have crushed me, perhaps enough to affect my prognosis.

One roommate had a grown son who had been away—in Europe, I think—and had not seen her since before she fell ill. Now he came every afternoon to play cards and chat with her; he took an interest in her medical treatment and stayed to speak to the doctors and ask them questions. I, too, had a devoted son. Neither of these sons took responsibility for their mother’s care (I did not need this degree of help and probably would not have allowed it), but both were deeply involved and interested in all its details. I also knew—presciently—that if I did need help, my son would give it. At Urgent Care, I was a lucky woman. My children or friends or both sat outside waiting for me, and when they were allowed in, they sat by my side, silent, waiting, still. Rob always sat with me for hours, holding my hand. A lovely doctor in Urgent Care came upon us this way one day and was startled.

On my first visit to Urgent Care, I was diagnosed with thrush, a fungal disease that sometimes occurs when many white cells are killed off. It sounded trivial to me, but the doctors considered it serious and said I had to be hospitalized. It was serious, they said, because it indicates a low white cell count and it was blocking my internal organs—at least my throat, which was why I could not swallow. (In subsequent months, I was given a medication before and after chemotherapy, to prevent thrush from developing.) After a long wait, they admitted me to the hospital, though not to the eleventh floor, which had no free beds.