The Sorcerer’s Apprentice

This is a chapter from a new book by Sallie Tisdale, The Sorcerer’s Apprentice: Inside the Modern Hospital, just published by McGraw-Hill.

Tisdale, a registered nurse and a gifted writer, masterfully evokes in this book “the surreal reality of the sick” and “the maelstrom in which health professionals strain for balance.” Modern medical miracles, and the problems those miracles create, is her theme, sketched in portraits of “premature babies so young and unfinished we see in them our relationship to fish, burn victims with faces cloaked in scars, dialysis patients whose blood runs before their eyes — miracles all, all suffering.”

“My moments with them,” she writes, “are a secret and illuminating experience. These are moments of harrowing physical pain, undiluted fear, and a kind of relentless grief that grips the heart in a fist. All this is a gift given to people who should have died, who can thank me and my medical peers for their extra time. They clamor for help, for an explanation of this dubious gift; we don’t seem to have the will to respond. An odd lethargy grips us, carrying us like a cork on the surf, and we bob along, unprotesting. We can, therefore we do.”

Tisdale avoids easy answers, and this isn’t an easy book to read. The suffering she depicts is heartrending; in a different way, so is the predicament of those who care for the ill. Yet Tisdale has sharp words for the medical aristocracy — the doctors and researchers who act as if they know more than they do — and makes her own preferences clear:

“I have stood by the bed of a brain-damaged man, a man whose brain had burst with blood and been sucked into his spine like a sausage crammed into its casing, stood there watching his lungs fill up with air and deflate only because of the respirator next to his bed, heard his heart beat only because of the drugs dripping into his veins. I was just a student nurse; I stood at the back, behind the physicians who couldn’t decide what to do, who seemed not to know what to do even as they knew what had to be done.

“What makes the difference, that I don’t share that indecision? I would have flipped the switch, pulled the plug, hopped a train for home without a backward glance, without an apology. Left alone with him, I bent over his ear and apologized for not doing just that. What’s the difference here? Am I more — or as some would have, less — humane than the physicians? Does my comparative lack of biochemical knowledge render me somehow blissfully ignorant — or knowledgeable of other things? Perhaps I am simply more willing to live with death, less willing to live with and accept unnatural pain. If so, it is because of my intent, my purpose, and that’s where we can begin to search.”

Our thanks to Sallie Tisdale and to McGraw-Hill for permission to reprint this chapter, entitled “The Man Who Wasn’t There.”

Statistics are the meat of medicine, whether they define pain and all its prosaic descriptions or enumerate one’s chances of getting out alive. The patient and his or her relevant pieces are assimilated into the data of survival rates and side-effect frequency. Like weather predictions, every step is stamped with percentages; each treatment is laden with possibility, pregnant with cost-benefit ratios. Freak accidents and miracles are everyday stuff in the computer. Spend a long enough time in your sickbed and you’ll be visited by one or the other; spend a long enough time and you become a case history just for being there on rounds the next day — and the next.

Ann Burke is a practical woman, fast-talking and quick to get to the point of a conversation. She is no-nonsense in the flesh, wanting even the jokes she tells to be over and done with as efficiently as possible. Ann is the head nurse of a busy cancer ward, stout and ruddy with her direct, impatient face framed by short, dark hair. She does the many small tasks of her job in a linear fashion, without pause. Monday is always her worst day, with papers piled up and often several new patients who arrived over the weekend.

In the first room is a teenage boy dying of leukemia. His curtains are drawn, and he speaks in the slow, rounded tones of the drugged, complaining of pain. Ann tells him she’ll be back. Next door is Carl Burger, a fifty-nine-year-old man whose colon cancer has metastasized to his lungs and brain, grown vine-like and tenacious. He has been unable to drink or eat enough at home, and his pain is getting worse. “Maybe we can get rid of the IV today,” Ann tells him, smiling. He grunts. “Maybe I can get rid of this hospital,” he says. And he smiles too, grimly. After taking her leave, Ann tells me in the hall, “That’s the longest sentence I’ve ever heard him say.”

Farther down the hall an elderly man with cancer tattooed throughout his body lies in pain. He has just been admitted, the paperwork still unfinished, and none of the staff has ever met him or his family before. The man is confused, sedated, wincing in pain with moans between his disconnected words. “It’s one of the problems with cancer treatment now,” Ann says. “Since the docs do so much chemotherapy in their offices these days, we often don’t see the patients here until they’re really sick.” She makes a note on the small pad in her pocket, to let the man’s physician know about his discomfort, and to call the family.

Ellen Sandburg is back, to Ann’s surprise. Ellen, a pretty and pale woman in her late thirties, was sent home from the hospital a few days earlier after another round of medication. Her ovarian cancer has spread into her lungs. Since she went home Ellen has been dizzy and too nauseated to eat. Her white blood count, a measure of the body’s ability to fight infection, is 300 — normal counts are in the 4,000 to 10,000 range. Her platelets, which help in blood clotting, are less than a fifth of normal. She has a nosebleed while she speaks to Ann. They chat about her nausea, what kind of food she might be able to hold down.

A smiling, obese woman rides by on a stretcher on her way to the floor below for her daily radiation treatment.

Ann makes her phone calls. She talks one physician into ordering a large dose of morphine for the elderly man in so much pain. She calls out to a nurse walking by, and within a few moments the bag of medication is hung over the man’s head, dripping into the IV tube in his forearm, enough to put him to sleep in peace. She tries to call his family, but no one answers.

On another phone in the square of desks a social worker talks. He is telling a colleague about one of his patients, a middle-aged woman, and her husband. “She told me they have a suicide pact in case she’s too sick to go home from the hospital,” he murmurs. He wonders about a court order to protect her “from herself.” His voice drops to a whisper, concerned, bent over the sheaf of papers in front of him.

A half-hour later, the nurse who fetched the medication waits for Ann to hang up the phone and then informs her that the elderly man has died. Ann sighs. “Shoot.” It’s Monday. She grabs the resident as he walks by, a tall, bearded, quiet man looking as if he wished he had something to do. She tells him to go declare death. This resident has worked on this ward only a few days. Before he closes the door of the man’s room behind him, he glances both ways as though to duck in without being seen.

Lily and her husband arrive at the desk. Lily is here for five days of medication to battle her ovarian cancer. Everyone in view calls a greeting to her. She smiles and kisses her tall, bald husband goodbye. He sets the overnight bag on the floor beside her and mournfully retreats the way they came. “Got any singles?” she asks Ann. “Not today, Lilly, we’re busy,” she answers. “Oh, heck. Well, any doubles without anyone in them? Give me one of those; maybe I’ll get lucky.” She catches the eye of a nurse passing by with a tray of syringes. “It’s hard to make cheerful conversation when you’re not feeling cheerful,” she tells her cheerfully.

A man arrives, hurried and anxious. He is unsure of himself. Finally, he asks the nurse standing next to Ann where to find a certain patient. Ann’s head comes up, and she and the nurse glance at each other. This is the son of the man who just died. By the corner of the desk Ann puts her hand on the man’s arm and says, “Your father passed away a short while ago.” She speaks slowly, to give him time to hear the words. “We tried to call you. I’m sorry.”

Every little odd ache, cramp, tension; each sore throat, swollen gland, headache; a sudden pain when you reach for something on a shelf, a morning lethargy, an unexpected reluctance: all these whisper cancer. Sings a poet: “As I was going up the stair, I met a man who wasn’t there. . . .” Cancer climbs onto your back like a monkey, unseen; it digs in its claws when you try to run. The weighing down, the heaviness of suspicion, lingers long after we’re told it’s gone away.

We are worried. One survey of people’s knowledge of cancer revealed a fair fraction of folks who believe that 50 to 100 percent of us will get cancer. We are cautioned against such a phobia, not to let the fear take hold and oppress us, but the truth is that millions of us will get cancer, one of every four, and most of us who get it will eventually die from it. This is a disease in which living is called a “clinical benefit” of the treatment, and success is measured in small segments of time during which the person hasn’t died. It lends itself a little too easily to metaphors of psychic pain and disorganization, analogies of cultural disruption and personal failure. Cancer has been with us for a long time.

What do we know? Not much — peculiar facts. We know that cancer of the tongue is fairly common among men in Bombay but rare among the Maori tribes of New Zealand — and that if a Maori moves to Bombay, he faces a higher risk of tongue cancer in the future. Eskimo tribes and the people of Malta are having more cancer of the pharynx these days; nuns have a high rate of breast cancer. We know that two people with an identical cancer may respond in completely different ways to medical treatment. Gleeful clusters of cells, like schools of fish, can swim through the blood and spinal fluid to the shores of a new world. We really don’t know very much about our friend cancer.

But we do have a sprawling mass of information, a mass that can remind us uncomfortably of a tumor. In the medical library near my home, in the ceiling-high stacks of magazines and journals arranged alphabetically, an entire bookcase a room wide is dedicated to periodicals beginning with the word “cancer.” This is but a fraction. Who can read all this? Researchers make a living just writing reviews of other researchers’ work, compiling it, organizing it, trying to make some sense out of it. Interesting what the researchers have found necessary to study: I’ve come across not one, not two, but dozens of scholarly and quite serious pieces devoted to proving that people with cancer tend to get depressed.

One of the qualities common to cancer specialists is an immediate and intense dislike for what they call “quackery,” alternative theories of cancer cause and cure. These phony medicine men and slick-talking practitioners, they tell us, are just out for money, preying on the helpless, the hopeless, the desperate. This dislike treads a thin line. Research, nice analytical research, continues to show that a variety of vitamins and certain foods can both help prevent and work to eradicate cancers — but ask your doctor about vitamin therapy. He is likely to be unimpressed. There is a dissonance here, ideas both contradictory and simultaneous. It is as though no truth can exist until it exists in the laboratory — and then it takes on a new name, a more complicated purpose and reason. There is more to the antagonism than simple philosophical territory. Cancer research is big business, one of the biggest in medicine — an industry. That’s one source of the bristling. Even more is the nagging sense of a solution eluded, the taunts of boys against each other: after all those billions of dollars and decades of research, we don’t know the cause, we can’t prevent it, we don’t know the cure, we can’t even diagnose it much of the time until it’s far advanced. Yes, there are cures — tumors go away, symptoms disappear, people climb out of their beds and walk home. But we don’t always know where the cure comes from, for the untreated are cured sometimes as well. Knowing so little about the thing itself, having so much information and so little understanding, desperate to classify and define — perhaps it’s a bit early to pat ourselves on the back for any apparent progress. Tumors go away by themselves, silent, enigmatic. We think the cancer has vacated because we persist in seeing it as separate from ourselves, discontinuous — and that is an easy thing to want to believe. Any assumption at all in the wake of small successes can be dangerous.

The researchers assume — need to believe — that the solutions have thus far evaded us because they lie in nothing simple, but are instead a complex and hieroglyphic mystery of the cell, a sequence decipherable only to a few initiated experts hoping to stumble across the key. Therefore, the mounds of impenetrable chemistry and the mountains of repeated trials and cautious hypotheses continue to grow. The scramble for grant money and fellowships can partly explain away the supercilious articles on depression. But it’s that fear of failure that irritates the researchers most. Meanwhile, these Andean piles have gained us — what? All but the last step of the journey? Perhaps nothing much at all. For every ten women who get ovarian cancer, eight will die in less than five years, a fact that hasn’t changed in three decades.

This is a disease in which living is called a “clinical benefit” of the treatment, and success is measured in small segments of time during which the person hasn’t died.

I’ve seen a number of people die of cancer — some quickly, some slowly. I’ve seen a few live with it too; some seem even to shake the monkey off. But all have to confront it, sooner or later, no matter how hard or delayed the confrontation, and pick a strategy. What can you do with a tumor curled up to your belly? Embrace it or be rid of it — and much of the “alternative” therapy for cancer claims the true key lies in some combination of the two. To embrace your tumor is to acknowledge its life, to say, as one might to a cat prowling uninvited in the pantry, yes, you are whole, you have desires, but you cannot satisfy them here. Be gone, cat, and take your smile with you.

Strike first with the knife. Cancers often form along particular organs, billowing up the side of the liver, stomach, kidney, or brain. Unfortunately, they curl up tightly to things we’d rather not part with. This loss is the first one; others follow.

One reaction people have when they discover they have cancer is a kind of revulsion, a disgust at this fecund birth inside them. To have it cut away can be a relief and a benevolence. The knife slides in and cuts it away, and that only validates its alien identity, something apart and not of you. If it cuddles up so close that part of you pulls away with it, well — perhaps that’s best. Contamination, then, cutting your slack a little, but coming away from it clean.

Other cancers are “inoperable.” A chilling word, with its intimations of negative outcomes and poor feedback mechanisms. Inoperable tumors are of three types, generally: those which spread so far and wide, hither and yon across the interior, that too little of you would be left after cutting; those which wind around delicate structures not meant to be sliced, such as the frontal lobe of the brain; and cancers of the blood and bone marrow, which aren’t isolated tumors at all.

Surgery, drugs, and radiation are put together to form combination therapies. Every week the journals, in their proliferation, print new articles comparing one combination therapy to another, one approach to another, for the hundreds of different diseases called “cancer.” If one works this well, perhaps another will work better, perhaps to add this drug, to cut sooner, to do radiation treatments longer. The physician in charge must manage the possibilities, the mathematics, by reading the research and asking around.

Radiation kills cells, shrinks them up like the feet of the wicked witch after Dorothy’s house fell on her. Radiation can completely destroy some tumors and reduce the size of others, so even in terminal cases it may be used for “palliation” — to reduce pressure for relief from pain.

Several kinds of brain tumors, especially tumors that have spread from another site, are treated in part by radiation. At the beginning, the line of radiation is demarcated on the outside of the skull. It is drawn in indelible ink, so that each day the hot beam will fall on the same corner. The treatments last mere moments, unseen, unheard flashes of heat that one can hardly believe in, lying on the narrow table, listening to the hum of the motor that moves the shield from the nugget of fire. As the days pass the hair falls out, the scalp grows tight and dry and wrinkled. The skin itches and can burn as though you had lain too long in the July sun. The black and purple lines of the field grow more prominent as the skull grows bald.

I remember two people who shared a kind of tumor and a kind of treatment, with little else in common. Helen, still in her forties, was a thin, stately woman who was the matriarch of a large, close-knit family. She and her husband were deaf and mute and communicated only with sign language. Their children spoke, but not to members of the family. Sometimes five people would gather in Helen’s room, taking seats on the windowsill and in her wheelchair, and talk animatedly, laughing, bearing news: all in silence, hands shooting through the air like comets. I felt inadequate, interrupting the commotion, stupid and illiterate.

Helen’s son taught me to say a few words: bedpan, pain, eat, love, sleep. She took her medication without comment, and I would wonder whether she was stoic or simply so used to silence that even her pain was to be suffered without sound.

Radiation to her brain tumor made her sick to her stomach and very weak. She rapidly lost weight. After a week of treatments, she was bald and her face flaked in dry patches like peeling paint. The tumor was not responding, not shrinking; she was not going to get well.

Just a few days before she died, she asked me to put her on the commode, a bedside toilet. The morphine she had swallowed every few hours for weeks made her constipated most of the time. When I returned fifteen minutes later to help her back to bed, she was crying. I’d never seen her cry. As I put my arms under hers to ease the few steps, she collapsed, her thin legs suddenly too tired to hold her, and she dropped tears on my arm. Not a sound passed from her.

During these same weeks, Charlie stayed in a room down the hall. He was much older than Helen, without a family, and far from silent. He suffered the indignity of the cancer as he continued to suffer the other indignities life had pressed upon him: two fingers were missing from one hand, and one eye was false. He told his miseries to any who walked in — and sometimes by — his door.

The radiation flayed Charlie’s skin and hair off his skull in bright red stripes. A few days after the treatments had begun he had an allergic reaction to a medication and his whole body turned lobster-red; it was covered with spots and itched without respite — itched hot, he told me, so that he felt himself burning up in the pricking of many tiny needles. I began bathing him with cold, wet towels. They would get warm in a few minutes; I would have to change the water to keep it cool. He was exhaling the heat as though he’d taken the radiation in and become a fuel source.

“I want to die,” he would announce to each and all. The socket of his missing eye was irritated and draining; he’d had to take the globe out and store it in his drawer, a last indignity. Once he looked at me with the one good eye, the other a sunken fold, and said, “Kill me.” It was a peremptory demand. He needn’t have sought assistance. The cancer killed Charlie a few days later.

Little jars of radiation can be put inside a person. They can be sewn into the skin above the tumor, swallowed or breathed, gently inserted in a vagina. During the time of such treatments, the patient is dangerous, a reactor. He or she is confined to bed, treated with gloves, talked to from a distance. The heat of the radiation meets the metabolic heat of an erupting tumor, and the two energies explode, canceling each other out, sometimes taking the whole world with them.

Every war has a weapon of particular horror. In World War I it was mustard gas, the chemical that kills by burning, inside and out, sometimes quickly and sometimes not. It exfoliates mucus membranes the way napalm peels off palm tree’s bark. Doctors treating mustard gas victims noted, in passing, that they had very low white blood counts and their bone marrow production was slowed. Since leukemia is an overgrowth of white cells, the physicians made an astute connection and found a silver lining to the war. Medicine often advances during war, after all; there is nothing like disaster to create human laboratories. Modern chemotherapy was, in a very real sense, the contribution of World War I. In a modified form, mustard gas is still being used against leukemia and lymph cancers.

Cancer cells have two particular characteristics: they are usually fast and they are always primitive. They multiply in a haphazard, unproductive way, fast and faster. They are called “nondifferentiated” because they have no special function; cancer cells don’t grow up to be skin cells or liver cells or nerve cells. They live only to reproduce again, take up more space. Cancer cells are usually bigger than normal cells, and they are shaped differently, amorphous. But they are also different from each other, each harking to a different call. No beehive here, no orderly rows or camps of cells all neatly tucked in together like logs in a log house. These queer birds go their own way, laughing, making ragged sheets and tangled nests of cells. Most disturbing of all, they seem to thrive on trouble, growing in circumstances that would kill normal cells. In fact, abnormal conditions can speed the growth of tumors, and the bigger they get, the hungrier they are.

A tumor is called a neoplasm — a growth that serves no function living at the expense of the host. A parasite. The roots of the word “neoplasm” are a “thing recently formed,” and such is the tumor: it grows and changes so quickly it is always new, always being formed. Anticancer drugs are properly called “antineoplastics,” but in the business people call them “chemotherapy.” The idea of drug therapy in cancer is that a fast-growing cell can be killed by interfering with any of its several phases of growth; since a tumor has any number of cells in different phases of growth at any time, drugs that attack in several different phases are best. Combinations of drugs can serve the same purpose. Cancer drugs are only slightly selective for their target; they hit all fast-growing cells — our hair, stomach and intestinal linings, and skin. The margin of safety is often very narrow. Ellen Sandburg is suffering her nausea, weakness, and nosebleeds not from the cancer but from the chemotherapy; it has weakened her to a dangerous state. Chemotherapy is like weeding a wheat field by walking through it with a sickle mowing down whole swaths of grain.

Each cancer drug has a certain “kill rate.” A chemical with an eighty percent kill rate generally kills eighty percent of the cancer cells with each dose. This accomplishes a kind of exponential decline over time, a reverse of the startling exponential growth of the disease. Physicians design drug regimens that will, it is hoped, kill as many cancer cells as possible as quickly as possible without killing the host. The patient is the village that must be destroyed in order to be saved. Methotrexate is a drug used in the treatment of several types of cancer. When it is given in high doses, severe kidney and liver damage can occur. To countermand the potentially fatal effects of methotrexate, it is followed several hours later by another drug called leucovorin, which bumps the methotrexate off the cells. This is called the “leucovorin rescue.” If rescue is delayed too long or the doses are too low, the damage from the methotrexate can be permanent.

Drugs are given once a week, or for several days at a time every few weeks, or every day — whatever combination appears most likely to work. Patients are resigned to six months, twelve months, two years — even longer in some cases — of side effects. Will your hair fall out? Will you vomit till your stomach seems to hang outside your mouth? There’s only one way to tell. Will the drugs kill the particular cells of your particular tumor? There’s only one way to tell, and time is a-wasting.

I’m sure the cancer specialists are impatient with all my gloom by now. After all, millions of people are walking around who “beat” cancer: two million according to the National Institute of Health; three million according to the American Cancer society. How many hidden mastectomies, colostomies, ileostomies, and hysterectomies do you pass in the bank and the grocery store every day? Pessimism about cancer treatment is one side of a line that falls like a sharp shadow through the ward: either you live or you die.

Interesting what the researchers have found necessary to study: I’ve come across not one, not two, but dozens of scholarly and quite serious pieces devoted to proving that people with cancer tend to get depressed.

“I was a real difficult patient. My surgeon struggled with me a lot; I was real angry, real nasty to that poor man, and he’s just this very nice, very quiet type. I was taking things out on him. I was real angry. Because you go through life and you see a lot of people who just trash their bodies, could care less about their health — and it just didn’t seem fair, and there was an awful lot of anger. And I think that carried me through sometimes — it gave me something to fight with.”

Words and pictures fail to describe clearly a woman like Evelyn Marley. In all fairness, to get a sense of Evelyn one must sit on her sofa by the fireplace listening to the continual chatter and buzz of the finches in the row of cages behind you, watching Evelyn move and smile and laugh, throw her head back in a giggle and wave her hands around as she struggles to get a point across. Evelyn is very pretty, blond, round, and bright-cheeked, and she’s happy.

Five years ago, when she was twenty-five, Evelyn found a lump in her right breast. She went on a scheduled vacation without seeing her doctor. “In the back of my mind I was really conscious of the change. The tumor really did grow in those two weeks. I could feel the pressure of it, feel the change. I knew that it was malignant.” She returned from the beach and soon found herself topless in front of an internist she’d never met before, a cancer specialist. “He drew a circle around it so another doctor could look at it, and then he told me it was cancer, by feeling it, without a biopsy. I wasn’t ready to hear that. He didn’t say, ‘What do you think about that? Do you have anyone to drive you home? Can you stand up?’ I mean, it’s like he didn’t realize — he couldn’t have hit me harder if he’d knocked me over. The man had absolutely no empathy or concern. He just said, ‘It’s malignant and it’s going to have to be removed.’ And just sent me out.”

Evelyn thinks now, as she’s thought about that moment many times, and adds, “Maybe I wanted them to ease me into it. And I needed them to say, ‘But this doesn’t mean you’re going to be dead.’ They forget about everything you read about cancer in the paper. They can take out the word ‘cancer’ and put in the word ‘death.’ It’s almost synonymous. Some bad press there.”

She was sent for a mammography, an x-ray test of the breast tissues that can spot a tumor too small to feel. A second lump was found in the right breast, and several small lumps were also found in the left breast. At the time, five years ago, it was still routine procedure to do an amputation of the breast — a mastectomy — on the surgical table as soon as the lump was found to be malignant. The patient didn’t wake from anesthesia first; the results were always a surprise. The consent forms given to potential breast cancer victims included permission to do complete mastectomies before the diagnosis of cancer was confirmed. Evelyn refused to sign. “They pressured me — they came back in my room and asked me if I fully understood. Now I know why they strap you to those gurneys — I’d have rather been anywhere but there.” She wanted to investigate alternatives, tried to round up enough money to go to a Mexican clinic, to get some laetrile. She agreed to a biopsy, only, on each breast. Both were malignant. “I was really struggling for time to make up my own decisions; they were push, push, push. Once they did the biopsy, that was it — you’re going in tomorrow. All the time in my heart I knew that if I wanted to live I probably did need to have the surgeries. And I did have the option to keep the left breast and have radiation, but radiation was too frightening to me.”

A few weeks after the biopsies, with no clear alternative available, Evelyn had a modified radical mastectomy on her right breast, in which the breast and most of the nearby lymph nodes were removed. A week later she had a simple mastectomy on the left, in which only the breast was removed. But her shocks weren’t over. As she began to eat her first meal after the second surgery, a doctor she had never met came into her hospital room. He’d been asked to consult on her case by her regular doctor. “He came into my room and told me it was a good thing my meal was cold because it would wait,” Evelyn remembers, and one still sees the anger in her smile. “He informed me I had some real problems, and he thought a year and a half to two years of chemotherapy would be appropriate, and I really should consider having a complete hysterectomy. I was twenty-five years old. I had not had any children, and the last month had been real fun. This man talking — and not even ‘How are you?’ or ‘Are you feeling OK?’ None of the formalities. I informed him that they couldn’t continue to carve me up like I was a bar of soap, and I had some rights and some things to think about.” She recently went over her medical records with a new physician. “I’m really incensed about this now, because in my file was this asshole’s letter about me, and he was so biased! The letter said, ‘This angry, hostile young woman.’ He even called me unfortunate! He felt really sorry for me, and then he thanked the doctor for the referral.”

She began chemotherapy, once a week for a year and a half. She lost her job because of missing so much work, and she was evicted from her house when she couldn’t pay the rent. She had no insurance, and she didn’t qualify for welfare.

By this time in her treatment, Evelyn was marked as angry. She demanded the right to have a bottle of vitamins by her bedside during her treatments. “It may sound really strange,” she says now, “but I was thinking about some of the reasons why I was able to pull through, and it’s because I was able to establish a very, very small element of control. I had really strong fears about chemotherapy. Unless you’re knowledgeable, all you hear about are the people who died. And it’s not always clear whether they died from the disease or the treatment. Now I know it’s questionable still. It was as if I was being a disobedient child.”

“The first time the bandages were off, the showers were horrible. I hated showers. It was a straight shot down, and no matter how thin I was, my stomach just stuck out huge. You have this protective bandage on — they bandage you up so much it almost looks as if you have breasts. I didn’t have much trouble looking at it after the surgery, I guess, because I’d never seen anything like it. It was when it was healed and it still didn’t look good. . . .”

Evelyn was given a prescription for breast prostheses, the artificial pads worn inside a bra to give shape after mastectomies. “I can remember putting them gently back in the box, being so careful with them. Then after a while, I remember throwing them at my boyfriend, putting one on the dog’s head — it had a real cone shape, made him look like a little Trojan warrior. It sounds strange. I had to learn to laugh at them; I had to learn to laugh at myself. I remember walking through a crowd one time and having my bra unhook.” The pads just fell out. One of her boyfriend’s friends asked her curiously: “How do you know which way to put your clothes on?” She retorted: “How do you?”

Two years after her original surgeries, Evelyn went in for reconstruction, a process she initiated and carried through on her own. Reconstruction of the breasts is a plastic surgery technique that implants an artificial prosthesis in the chest wall to “pad out” the flattened area in a semblance of breasts. Later on, if only one breast has been removed, a nipple can be grafted onto the new breast from the healthy nipple. In some cases, the nipple is “rescued” from the amputated breast and “banked” in the groin, like an image from some erotic Freudian dream, where it grows normally until the time is right to reimplant it on the new breast. This last procedure is losing popularity, though, because in some cases the nipple has carried the cancer with it to the reconstructed area. Reconstruction is erratically successful; implants can slip, migrate, and often don’t have a normal shape. Evelyn pats her blouse and says, “This one’s flat, and this one’s a little rounder. They don’t look like breasts. I went through the same process of standing in the shower and being almost hysterical. I called my doctor and said, ‘What did you do to me?’ I was terribly disappointed, because it wasn’t perfect. There were still scars. I knew there would be scars. I guess in my mind’s eye I was thinking he was going to give me a really good approximation of what my breasts had been, and he couldn’t. When I get in the shower now, I at least have some kind of shape.”

She lives in a large, airy house with a new roommate; she has a new boyfriend; she has a new job. Evelyn is getting her master’s degree in social work; she wants to work with physicians, teach them a “better way to take care of people.” There is still a question of whether she should have children, because the hormones involved in pregnancy have the potential to trigger a tumor again. She laughs and laughs, telling stories, awful stories, about her experience. She laughs and gets tears in her eyes and looks intently at me, still angry. “A woman saw me later and said, ‘I never thought you’d make it — you were so angry.’ I guess the question is, ‘What is a healthy response?’ ”

Chemotherapy is like weeding a wheat field by walking through it with a sickle mowing down whole swaths of grain.

“The relationship between pain and the emotional state of the cancer patient must be clearly recognized. Pain may provide a means for the cancer patient to express anguish.” So says a recent cancer textbook. But the pain may be a source of the anguish being expressed. More theories again. About sixty to eighty percent of patients hospitalized with advanced cancer have severe pain. Pain can be the first warning, that original nagging ache — and it can withhold its presence until the end. The growing tumors press on nerves and blood vessels and other parts of you; joints stiffen, and swollen and inflamed tissue surrounds them. Cancer pain has a unique quality to the suffering; it is constant, unrelenting, unrelieved. It fades and brightens, tacks and jibes, but never — not even in sleep — does it disappear. Not unless that which digs its thumbs in is removed.

The cancer patient and the burn patient have much in common. Both have been visited by devastation. Both have lost much that was dear. Both suffer quantities of pain, buckets of it, and both are given more pain for their trouble. The burn patient quivers while the dressings are changed; the cancer patient vomits and frays. Lucky, both, that research is so diligently ferreting out whether their pain is real, whether they might not be better given a tranquilizer or antidepressant than the cool wash of morphine.

Over fifteen years ago a textbook advocated ordering regular pain medication for cancer patients, but this is still uncommon. Many studies have shown that both physicians and nurses tend to give too little medication too infrequently to relieve pain in cancer patients. In some cases physicians say they will even decrease the dose or use a placebo when a patient’s complaints of pain continue. Only one reason is consistently given by these health professionals eager to give the best of care: the possibility of addiction. Like burn pain, the chronic pain of cancer absorbs the drug, drinking it in, and narcotics can give pain relief without any sensation of a narcotic high, a muted norm. But that straight-laced anxiety remains, almost a contempt. We become mothers, overly concerned with doing the right thing, always searching the patient for the successful adjustment to the sick role, the surrender to sorrow. So do we look beneath the promised pain and the sick person’s suffering for expressions of anguish, symptoms of depression, an objective measurement. So do we protect him from an imaginary, future shame.

What seems forgotten is how addiction often develops. Addiction is a product of preoccupation, of obsession. In pain, unable to think of anything else, counting the minutes until the next dose will be permitted — and then having to ask, always having to ask because the drug has been ordered on an “as necessary” basis by the physician and so never makes it on the nurse’s schedule of drugs to be given at certain times — here is a person already psychologically addicted, already humiliated. He can think of nothing but his pain and its relief; he is already defeated and at our mercy. Here is a junkie.

This is what I must do when my cancer patient asks for a dose of narcotic. I find the physician’s order and check the dose allowed, the frequency, and when she last received it. If the time is right, I make sure the order is current — sometimes narcotic orders must be renewed every week or two. Then I find the keys, for narcotics are locked up, and locked again. I find the room, the cart of medication or the drawer, and the bin of narcotics all locked. I find the narcotic book, and in the book I find the line for the particular medication (say Demerol, a synthetic narcotic, in 50 milligram doses). I pull out the box of Demerol vials or pills, check the dose, and check the number. The book says twenty-four should be left. Are there twenty-four? Yes. So I take one, write the patient’s name, her room number, her physician, my name, the dose, the date, the time, and how many vials are left. I am careful to lock up. Then she gets her shot. If when I count the medicine there are too few to match the book or, at the end of the day, if a narcotic is unaccounted for, I have to write an incident report, describing the entire procedure. If I draw the medicine up and go to her room and she’s changed her mind, doesn’t want it — or if I drop the pill on the floor — I have to find another nurse. Together we pour the medicine down the toilet and both of us sign the book — “narcotic wasted.” At the beginning and end of each shift, two nurses count every single dose of every narcotic left.

All this rigamarole is because narcotics are categorized as “controlled substances.” Any drug that has the potential for causing addiction is handled in this way, and people are very, very chary about them. Pharmacies and houses are robbed for these drugs; nurses who pocket a few will lose their licenses. As a student nurse years ago I was watching a throat surgery. I saw the circulation nurse sign out a vial of cocaine, used to numb the throat and stop the bleeding, and then drop the vial in her pocket rather than lay it with the other medications. I asked her why she handled it that way and she rather impolitely told me that a few narcotics had recently been missing; in this way she could keep an eye on it. Much to my surprise, my instructor took me aside hours later and told me I’d been reported for showing “undue curiosity” about the cocaine. The nurse wondered if I was a thief. Whenever something comes up short, all the nurses — since it is only nurses who carry keys — take a breath and hold it, hoping they won’t be accused.

All this is to keep those drugs which make us feel good in the proper hands — that is, out of the hands of people who would take them just to feel good. That is not permitted, and I am charged with being sure that my patients, cancer or no, aren’t taking them for that reason either.

The English, in that civilized way of English writers, tell us in the medical journals that heroin is the best cure for pain in cancer, unexcelled, a grace. In this country we give morphine, methadone, aspirin, and various synthetic drugs for cancer pain and take up space in American journals with studies trying to show that all these are just as good as heroin. A controversy, a tempest fought away from the bedside. I’m just waiting for my pill, says the patient.

Methadone is an interesting drug. It is a narcotic used most often to treat heroin addicts in detoxification programs, but more and more often for cancer. Methadone is less likely to cause either sedation or euphoria than heroin and morphine, and once a person has become tolerant of a certain dose, taking other narcotics has little effect. Methadone is also addictive. A person can be switched from heroin addiction to methadone addiction in a few weeks; the result is still a junkie, but one with a legal habit who will get little joy from other narcotics — and thus little motivation to take them. Methadone has been used to treat cancer patients more frequently in the last few years partly because it can be taken by mouth rather than being injected — and partly because of its joylessness. The artificial tranquility of heroin and morphine is exactly what gives them “potential for abuse.” Never mind that terminally ill patients who are given either drug say they experience little pleasure from them — the intensity and constancy of the pain seem to “absorb” pleasure for cancer patients in the same way they do for burn patients. We are protecting them from the possibility of pleasure, of dreamy rest, of absence and release. The pain, it seems (once we admit it exists), can be permitted to be erased, but not replaced.

The trick with methadone is that its worth depends on keeping a steady level in the bloodstream. Methadone must be given regularly, around the clock, never late or forgotten. If a person is getting too much, you can’t skip a dose and catch up; you must reduce the amount of every dose and keep giving it. Methadone is the acid test of cancer nursing: pay proper attention and you can help free a person from pain; grow absentminded, forget your homework, and you may as well have done nothing at all. The real secret to controlling pain is to stop the perception of pain before it begins — in the nerve cells, across the synapses, in consciousness.

The Food and Drug Administration recently approved a new drug called naltrexone. It is an opioid antagonist — its only purpose is to block the effects of such drugs as opium, morphine, and incidentally, methadone. Naltrexone will be used to treat recovering addicts, including methadone addicts, in the same way and for the same reason that methadone has been used to treat heroin addicts. Inordinate and dangerous pleasure is traded for ordinary life, and then that is made addictive; with methadone, even the routine lack of euphoria becomes essential.

Perhaps one reason pain medication has been so badly managed is that it “requires the explicit or at least tacit admission that the disease is incurable.” I wonder, watching nurses avoid certain rooms, hearing the bad jokes of the residents and the detached, arm’s-length language of the physicians: do we blame them, these patients? If a man who has smoked two packs of cigarettes a day for thirty years finds himself dying of lung cancer, perhaps he should die in pain. He has brought this on himself, and we know it — and he knows we know it. The table turns, and he also knows, as do we, that there’s nothing that can be done. This shared and guilty knowledge isn’t enough; it is not all right, not to be given, that his death be pain-free. This is his punishment.

Recent years have seen a proliferation of books about the “cancer personality,” treatises that aim to connect behavior and character with disease. The connection is not a new one, and neither are the conclusions of the authors. Sin, guilt, and abuse and misuse of the body we are given at birth, the maltreatment we receive from the world — all are accused of the genesis of disease. Where does cancer come from, this illness that lends itself too easily to metaphor? Do we repress anger and grow tumors instead, sorrow in secret until our cells explode in a rage of compensation? Do we give cancer to each other, one to one, the way we pass out moods and ideas? Do we sit like blood brothers slitting fingertips and pressing the fluid together, sealing fate?

“They made me feel guilty,” says Evelyn Marley about the books she bought after her diagnosis. “They made me feel as if I’d wanted to get cancer.” Cancer patients are often ashamed, self-conscious, chagrined at the weak character that allowed them to succumb to a “lifestyle” illness. What a cruel kind of comfort to offer, after the fact. Even the patient is a judge.

Over fifteen years ago a textbook advocated ordering regular pain medication for cancer patients, but this is still uncommon. Many studies have shown that both physicians and nurses tend to give too little medication too infrequently to relieve pain in cancer patients. . . . We become mothers, overly concerned with doing the right thing, always searching the patient for that successful adjustment to the sick role, the surrender to sorrow.

Several months ago the nursing center where I worked admitted a woman in her sixties who was dying of cancer of the neck. She knew she was dying; her family brought with her suitcase a favorite armchair, a pile of books, a small television, and several plants. She moved into the only room then available, the single room with a private bath usually reserved for isolation cases. She took the seclusion and created her own death from it.

The woman had had a permanent tracheostomy as part of the cancer treatment, and she was left unable to speak. She refused to learn the methods by which such people can regain a form of speech. In fact, she refused everything: she refused to be bathed, to have the tracheostomy cleaned or bandaged, to have the room cleaned, the wastebaskets emptied. Her wound drained mucus, which she wiped away with tissues; the pile of tissues accumulated. She couldn’t speak, wouldn’t try; often she would refuse even to write a note. She wouldn’t look us in the eye, and when we came in the room, she would cover her neck (it was only a small hole, a slight scar to our jaded eyes) with her hands and turn away. The room smelled; she smelled. We were torn between the desire to let her have the death of her choosing, the privacy she craved, and our own need to care for her, clean her up, and cheer the dark corners of the room.

I know many physicians and nurses who would have treated her for the obvious depression and withdrawal with tranquilizers and antidepressants and would have given physical care even if it meant sedating her. We chose the decision of inaction, and it was hard. A few things were done, trash taken out and floors mopped, and we left her alone. The room was equipped with a closed-circuit television, and I still don’t know if she realized that we could watch her from the distance of the nurse’s desk.

In the last days before she died she lay for many hours with hardly a movement. We had several false alarms of death, only to look closer and see her head turn a fraction, see her sigh. I do not know and never will whether she died a good death or a bad one — whether she punished herself for her illness and was rewarded with atonement, or whether she punished herself and found no reward at all. For all I know, and it isn’t much, she chose a healthy and thoughtful death, making manifest without need for polite explanations the isolation of all who are dying.

This judgement is everywhere. A particular cancer, uncommon, begins in the blood vessels. The first symptom is usually purple or dark-brown spots on the toes and legs. For decades this cancer has been a footnote, an oddity — until recently. Now people who had spent their professional lives without seeing this disease have become experts in its diagnosis and treatment. The cancer is Kaposi’s sarcoma, and it is associated with AIDS.

Acquired immune deficiency syndrome — AIDS — is both literally and metaphorically the cancer that can be caught. It is the penultimate surrender of the ill to the illness, an involuntary succumbing, a giving up. The invisible hostility of the world becomes visible, palpable, apocalyptic.

Infectious diseases attack the various cells of the body, the way meningitis gets a hold on someone and digs in its toes. The army of one attacks the army of the other, and the symptoms that follow are simple and old-fashioned war, filled with skirmishes and a variety of tactics. Losses are felt on both sides, and eventually one wins out. But AIDS, whatever causes it, whatever creates it or begins it — be it virus or a new molecule altogether or nothing at all — whatever AIDS is, it has a new strategy. AIDS is the new first-strike weapon, the Trident submarine of illnesses. Forget the old method of hand-to-hand combat, soldier to soldier. AIDS blows up the weapons, bombs the munition dumps, and lays siege. Soon, very soon, the environment does its work for it, because the body can no longer battle any bug, any germ, at all.

AIDS patients fight themselves as well, becoming allergic to their own cells. They catch rare diseases, diseases such as cryptosporidium, which had only six recorded cases from 1976 to 1981 worldwide and then fourteen cases in gay men alone in the next year. AIDS patients get ill from bugs that don’t bother anyone else; they get thrush, a cottage cheese-like yeast infection of the mouth, and so on. A particular pneumonia, Pneumocystis carinii, preys on AIDS patients, a pneumonia rarely seen in anyone else. The whole idea of an opportunistic infection has taken on new meaning because of AIDS, no longer confined to the virulent and mean. It is as though a whole new generation of formerly friendly organisms has seen the light.

Everything that happens to AIDS patients — but to a more controlled, more specific degree — happens to cancer patients who are given immunosuppressive drugs and to kidney transplant recipients who take steroids. Like the strike of lightning that burns off the face, it is not a highly contagious destiny, but a strangely selective one.

All of the sick are expatriates, forever homesick. The victims of AIDS are also exiled — their alienation is taken a step beyond mere decay. They die in isolation rooms, attended by the masked and gloved, who are scared behind their costumes. AIDS has become an agent of right and wrong, made so by the not-sick, but no amount of penance and retribution will influence its course. Kaposi’s sarcoma is itself evolving, finding new stones to step on. In increasing numbers Kaposi’s is being reported in kidney transplant patients, in people with other cancers who get immunosuppressive therapy, in other groups of people receiving the boon of medicine. Its lesions are spreading, appearing on the gums, the rectum, the intestine — where they may hemorrhage until a person bleeds to death. And how is it treated? With radiation, with chemotherapy.

Richard is a physician’s assistant in a clinic where I volunteer on occasion. We were friendly acquaintances when we decided to split the cost of Spanish lessons, given by a Panamanian nurse named Hilda. She would not allow us to speak English during lessons, and even in our most fumbling ignorance we were forced to search for a way to say what we wanted to say.

One morning, before lessons began, Richard turned to me. In forbidden English he said, “They want to do a radical neck on me. I have metastatic cancer.” I knew immediately who “they” were, and I knew what a “radical neck” — a complex and mutilating surgery on the throat — would mean. Richard is thirty-five years old, strong, vigorous, and quick to laugh. He was planning to leave for three weeks of wilderness hiking when he discovered the nature of the lump on his neck.

Hilda arrived, and we spoke only Spanish. She is a nurse and teacher of no mean ability. She knew something was wrong, and the morning we learned doloroso for sorrowful and miedo for fear. With gestures, facial expressions, mismatched words, and tone, Richard, Hilda, and I talked about death. It was the first time he had been able to speak of it. “Impuestos y muerte,” she said, smiling. Taxes and death.

The physicians who work with Richard at the clinic, his fellow assistants, his friends who are nurses — Richard felt they turned from him with his diagnosis. He had his surgery, and it was less extensive than feared. He has his voice still, he has his throat, but the bushy bright-red beard is gone. He is glad I didn’t “get weird” on him. His cancer has a survival rate of only five percent in five years. We speak Spanish haltingly, laughingly together. Impuestos y muerte.

Four weeks have passed since I last walked rounds with Ann Burke. I’m back to talk to Lily while she has another round of chemotherapy. In those weeks Carl Burger went home and died. Ellen Sandburg died before she could go home. The young boy in the dark room died, too.

Lily is fifty-four years old and she looks forty. Part of it, I think, is the stylish ash-blonde wig she wears most of the time to cover her drug-bald head. She has a trim figure — she claims that during her first surgery for ovarian cancer, when most of the tumor was removed (called a “debulking” in the parlance of medicine), she was given a “tummy tuck” in the bargain. Lily comes to the hospital every four weeks for five days of chemotherapy. This is her fourth visit in a sequence of eight. She’s not her usually jocular, vivacious self today, but she is talkative nonetheless.

Talking takes her mind off the waves of nausea that sweep over her every time a new bottle of medication is started on her IV. “The first couple days aren’t so bad, because your resistance is up,” she says quietly, holding a basin under her chin in case she must throw up. “By the third day, though, you have your reactions right away, because by then you haven’t had much to eat. At least I haven’t — I can’t eat their food. All I have to do is look at the menu to get sick to my stomach.” Besides the nausea, Lily has numb fingers and toes, a side effect that lingers most of the time and may last up to a year after her last chemotherapy. “The weakness is the thing I notice at home,” she says. “If I am very sparing and careful, I can get everything done, but I have to budget it like you do your money. Try not to do anything that takes a lot of muscle — like vacuuming. If I vacuum, it takes my strength for the whole day.” These symptoms and, of course, the hair. Her wig is off now, since she spends these days in bed alone. Not a hair rises from her head, not even baby down, no stubble, no color. When the drugs are done and her hair returns, no one can predict what color, what texture it will be. A surprise, a midyear Christmas gift for Lily to look forward to in a few months.

She refuses visitors, including her husband, during the drug courses. “He worries and fusses and stews. He just doesn’t need that stress — and neither do I.” Lily sits up for a moment, and then says, “You should never get cancer. I don’t know if you can control it or not. I think all your physical state is somewhat relative to your mental state, and if you didn’t get cancer, you’d get something. I was a classic case of someone who was kind of asking for it by not taking care of my mental problems.” Before her illness, Lily had a prolonged depression stemming from strife in her marriage. She often uses it as an example, a version of before-cancer with which to compare her ideas of after-cancer.

Lily emphasizes her attitude; she works it into every conversation: “I’m going to beat it. I don’t consider this life-threatening. Other people die of cancer, but I won’t.” She finds as many ways to say it as she can. “I won’t put up with depression, I’ll tell you that. I’ll get some professional help if I have to. Sometimes you feel like you have no control, and now I realize that I have to get control over it or I’ll be sick again. That was my problem — I thought there were some unsolvable problems, and I know I could have solved those problems if I’d put my mind to it. I thought maybe there was something wrong with me.”

A signed consent form is no indication that informed consent has been obtained, and a person facing death from an incurable disease, offered one slim chance, may be the least capable adult to give a considered decision.

What is cancer if not its collective survival rates? There is disease-free survival, with no sign of cancer, and there is just plain survival, disease or not. There is one-year survival, five-year survival, and ten-year survival. Drug combinations are developed by comparing the survival rates of two groups of people getting different combinations — but more on that in a minute. Just to look at a few relevant rates is illustrative.

Lily is the one woman in seventy who will get ovarian cancer. Seventy percent of those women will have an advanced stage of the disease by the time it is diagnosed. Whether or not any one woman survives depends quite a lot on how much of the tumor is left in her belly after surgery. In those advanced cases, the cancer may have invaded the intestines, bladder, uterus, and the lining of the abdomen itself. What surgery takes then, in its debulking pride, is more than just an ovary. The surgeons are exhorted to be aggressive in their slicing.

What is left when the knife has come and gone is called residue, and if the residue is more than two centimeters large, the statistical chances for survival are slim. This is why ovarian cancer is fought sometimes with massive surgery, cutting away parts of the lower intestine and rectum, the bladder, and the entire reproductive system. Survival in any group of women with ovarian cancer varies from a low of zero to nine percent to a high of about thirty-five percent.

Evelyn has more company for her missing and resculpted breasts than you may imagine. Breast cancer is the most common gynecological cancer in Western countries; one of every eleven women will get it. Breast cancer is also the leading cause of death in women between thirty-five and fifty-four years of age, and recent years have shown no improvement in survival rates.

After decades of blanket permission slips and routine radical mastectomies, women still aren’t living any longer. All those breasts summarily consigned to the incinerator, to ashes, along with the lymph nodes and chest-wall muscles, and no help to the woman. Research has steadily and ploddingly shown that a less extensive surgery and even simple removal of the tumor alone can be as effective. At this time, several states require physicians to discuss all the medical options for breast cancer before a woman consents to surgery. But compare Evelyn’s and Lily’s chances to those of a person with Hodgkin’s disease. Ten years after diagnosis, sixty-two percent of the patients with this cancer are still alive. More than half — that is an improvement. It is Hodgkin’s disease that is often pointed to and used to account for improved survival of cancer in general. Take almost any other kind of cancer, though, and the graphs look like steep and stumbling mountain-sides down to the flat grass of near-zero as the first year, the second year, the fifth year roll by.

Statistics galore. Choosing a therapy is a choice between statistics, between which journals you read and who your colleagues are, between whose research you’ve read and how carefully you read it. Cancer specialists have pet regimens, and they change with time — seriously considered but always less than certain. Part of the problem is the unpredictability of response.

People whose tumors get smaller on a drug are considered “responders” to the drug — or rather, their tumor is a responder. There is no sure way to predict who in any group of people with similar cancers will be a responder. Nonresponders lose time, suffering through a regimen that does no good. But there’s more: nonresponders are more easily weakened and debilitated by the chemotherapy. They are more susceptible to its damage at the same time that the tumor cells riding them are less so. Giving a nonresponder a heavy dose of chemotherapy can kill him or her. Do a few simple problems of research begin to appear?

Most chemotherapy research compares two groups of people receiving different combinations of drugs. The survival rates of the two groups are compared after some set period of time — say, six months and then again at one year or five years — for relative survival rates. The regimen given to the group with a higher survival rate is then considered the better drug. (Of course, the research will then be duplicated, replicated, and repeated, and individual physicians in the field will continue to give other combinations while the research is considered.) This comparison, because both groups will have responders and nonresponders in it — and one may have more than the other — is somewhat fallacious. A sidelight is the fact that in any one group the nonresponders on a drug therapy are most likely to die and thus skew the survival rate in their group against the whole group — even if the responders do very well.

A recent article pointed this out, without the usual dissembling. The physicians who wrote the study took a big chunk of chemotherapy research and restructured the kind of comparisons made to eliminate as much as possible the problem of nonresponders. They tried comparing survival rates between any group of people receiving a treatment and a matched group receiving no drug treatment at all. Their conclusion: “Most patients with cancer do not have tumors for which chemotherapy has been clearly demonstrated to be effective in prolonging life.” Lest their work be thought too rough on well-meaning researchers, they added toward the end a consolation: “Investigators who were enthusiastic about their findings may have wanted to present their results in the best possible light.”

The search continues. New drugs and old drugs looked at in new light are always being considered for use against cancer. After studying a drug’s effects on individual cells and then on animals, researchers have a sense of the drug’s possible effect on tumors as well as its side effects on the patient. At this point a drug is introduced into phase I studies on humans with cancer. One is reminded of the cautionary tales about quackery when phase I studies are considered.

The purposes of such a study, say one drug handbook, are “to establish the toxicity of an investigational agent in humans, to establish a maximum tolerated dose in humans, and to determine an optimal dose and schedule. . . . Most patients participating in a phase I study have advanced metastatic cancer, with little or no chance of deriving benefit from known treatments, or have tumors that have become resistant to standard forms of therapy.”

Put another way, a person dying of cancer, who is beyond the limited resources of traditional medicine, is offered a carrot on a stick, a last hope, a drug, “still in the experimental stages” which may yet be the cure. As with organ transplants, with the middle-class heroes of the artificial heart, the dying can feel they have made a contribution, helped advance medical science — perhaps gain a few hours, perhaps lose a few. To establish toxicity in people weakened by terminal cancer is to find out how much of a drug will kill them. Just before that point, you see, is the “maximum tolerated dose.”

The dying do make a contribution for their trouble. Unexpected side effects (or benefits) may appear in the course of a phase I study, and a clearer sense of dosage and timing as well as the effect of a drug on advanced, progressive cancer can be considered. These “fringe effects” are the only real purpose of a phase I study. Lives are not saved. It is just that people who are going to die anyway take the risks of the unknown.

If a drug “passes” its phase I study, either by virtue of making some dent in a tumor or improving a patient’s response to other drugs, or similar drugs, and so on, it is given over to phase II testing. Patients in phase II trials have an active cancer that has some statistical chance of being cured by standard treatment. Phase II trials study the effect of a drug on fast-growing tumors and slow-growing tumors, as well as on specific types of cancer. Most experimental drugs — and there are many — never get this far.

Phase III is the last of the human experiments. A new drug is tested in patients who are being treated, and its effect (the survival rate, of course, and the size of tumors) is compared to that achieved by conventional drugs. After this all that is left is approval by the Food and Drug Administration.

Laetrile was dismissed as useless after it failed to improve the rate of survival of a group of terminally ill people. A 1985 article in the New England Journal of Medicine (which also published the laetrile study) came to the same conclusion about vitamin C. High doses of vitamin C did nothing to improve the survival of terminal cancer patients, and so it was declared “worthless.”

This is the other problem with phase I studies. A new drug may be the cure for isolated, newly discovered tumors of a certain kind — but if it doesn’t perform better than drugs already in hand on incurable patients, it can be rejected completely. Only if a researcher wants to use a drug, believes in it for whatever reason, will it pass to patients not yet deemed beyond hope. What manufacturer or researcher would really be happy to discover that vitamins can cure or prevent cancer? What glory then?

Informed consent is a problem in cancer research; in fact, it may be an impossibility. A signed consent form is no indication that informed consent has been obtained, and a person facing death from an incurable disease, offered one slim chance, may be the least capable adult to give a considered decision. So little time is left for consideration. Quite a number of people have written in the course of discussions about treatment of deformed babies that no one in the midst of a crisis is capable of making an informed decision. Surely facing one’s own death constitutes a crisis at least as compelling as the care of one’s defective child. But little has been written about the terminal cancer patient’s freedom of choice, including the freedom to make what to some may be an irrational decision, that of turning away a possible miracle cure. One of the experimental drugs, sooner or later, may very well be the cure, it is true, and that thin possibility gleams in the distance, a shining city.

If, in the course of a research study, the researcher in charge begins to suspect that the new drug in question is working poorly, he or she faces a dilemma: should the research be stopped ahead of schedule and should the patients be directed to other, possibly more efficacious treatments? Or should the research be continued to further knowledge? The same researcher, seeing that the drug seems to be working unexpectedly well, faces a different dilemma: should the results be proclaimed without finishing the study, thereby alerting other researchers to its potential? What if the researcher jumps the gun, wanting to present the results “in the best possible light?” The constrictures of research require a certain amount of conformity to custom, a certain detached approach, a way of keeping oneself out of the picture. Even when there may be nothing but grasping at straws, the articles must be written calmly, with a slight edge of optimism. Who better to choose for the future of an individual patient than the impartial researcher dedicated to finding a cure for cancer?

For all the distaste a phase I study leaves in the mouth, what else are we to do? Monoclonal antibodies and other newly developed cell culture techniques have promise, but they are expensive, unfinished — more hieroglyphics rather than less. Liver cancer has “successfully” been treated (higher rates of remission, smaller tumors) with radioactive antibodies specific to cancer cells. This is the best of both worlds, perhaps — a living drug that shines with deadly light inside, into the dark depths, rendering the person once again dangerous and radiant. But in a way, it works.

The wheat field must be weeded. Can it be justified to give these drugs, these heavyweights, these hired killers, to a person in an early stage of cancer who may respond to a drug already tested? But how to refuse something that might work? What are we to do?

“He wasn’t there again today. I wish, I wish he’d stay away.” That nagging ache in my left calf, that chronically swollen gland in my neck. I worry them like a child at a loose tooth, they worry me back. Some of us get cancer and others of us do not; what for me? In my own family, one has died of stomach cancer, one of cancer of the bone marrow, and one of a brain tumor. I slide my hands along my breasts with regularity, seeking, never sure what I would choose. Even quivering under the bedsheets I like to think of myself as a hardy specimen.

I recently read a scholarly article on hardiness. The author equated it with the ability to withstand pain, acclimate to new surroundings, thrive on change and stress. Perhaps I’m not so hardy after all. She proposed the notion that hardy people are in control of their lives when healthy and stay in control when sick — and specifically, they are more likely to survive cancer because of it. They don’t succumb. Another queer kind of comfort for the ill, this unquantifiable characteristic. “The days wear on, but I endure,” wrote Apollinaire, and we come full circle to the patient we all love to hate: the difficult one, the ones with the gall to remind us what the gaping holes in their bodies really hide. I tell Richard about hardiness, but he already knows. “What if you had just six months to live?” he asks me, reading a self-help book on managing your time. And he laughs when he says it.

What a fine joke on all of us it would be were we to finally discover that cancer cured itself, or didn’t — to find that all the drugs and surgeries were not the cure. There are, after all, so many miracle stories, so many coffee-table anecdotes of people who refused surgery on a tumor the size of a grapefruit and a month later it was gone. In these stories it is often the person who has turned his or her back on the treatment, embracing the tumor, who finds the redemptive cure.

We know so little. Cancer registries are less than thirty years old, such a tiny amount of time as to make conclusions about cancer in any historical sense meaningless. We have to learn to look at cancer in terms of major population shifts, longevity, changes in diet, climate, stress, and environment over centuries and millennia, not decades. We have to wonder what we will die of if we do cure cancer, what will take its place. Cancer has become a giant metaphor not just for hapless, worried people who finger their bodies and wonder; it is a symbol to many thousands of people who look at the world as a puzzle with its pieces all in disarray. If we cure cancer — never mind the subtle distinctions in “cure,” in “cancer” — so much will be made clear. So many questions will be answered.

All this speculation, these ideas for me to turn in my hand like a shiny rock in the light: this is the easy part for me. I have nothing more immediate to grab my attention. I don’t have a tumor gnawing at me, leaving its Cheshire grin long after the cat has gone.

Tisdale’s work has appeared in THE SUN before, most recently her essay, “Why I Like Dead People,” in Issue 120.