A Little Cancer Truth

CHEMOWORLD
Surviving the cancer unit
By Sallie Tisdale

Several years ago, I began working on a small oncology unit at Providence Portland Medical Center in Portland, Oregon. The unit, known as 5-K, is shaped like a T and can hold twenty patients at a time. Its small size, the closely knit team, the long relationships with returning patients, felt exactly right. Nurses who come to 5-K usually stay a long time. The work is complex, challenging, intimate. To do it well requires me to be at my best. There is, too, the vague pleasure of feeling competent in a place where most people can't imagine working. The world of cancer is a world unto itself. Double doors at each end shut out the rest of the hospital in a kind of quarantine—keeping germs out but also keeping the cancer in.

So many people in my circle of family and friends have had cancer that not to be one of them feels strange at times. On 5-K, this circle has expanded to include many strangers. Sometimes it seems as if everyone has cancer, that having cancer is normal, and we're all just used to it. I know a lot of healthy survivors, but often the magnitude of the disease asserts itself. My mother's early death from breast cancer raises my risk of the disease significantly, so I have a mammogram every year. Last year, the technician took my films and left me in my drafty gown. She came back a few minutes later and said I needed to go down the hall for an ultrasound as well. She couldn't explain why; I'm sure she didn't really know. The ultrasound technician would only tell me there was a "shadow” and then she left with her own set of pictures. I waited in the dim, cramped room; I waited in a quivering fear that had a life of its own. When the young physician arrived, I almost tackled him. "Look," I said. "Look, I work on 5-K. You tell me what the hell is going on, right now." "Oh, we're not thinking a malignancy," he said, surprised. I wanted to hit him. I wanted to tell yell: you tell me that first .

"Cancer” is a catchword for a group of diseases defined by the cell in which they originate. Different cancers have different courses, prognoses, and treatments; they are different diseases. Some are fast and some are slow, some are relatively easy to treat and others almost impossible. They all involve abnormal cells without a useful function, cells that are not orderly and are not controlled by the normal mechanisms that manage cell growth. Tumors can double in size in two to three months. By the time of diagnosis, many have metastasized to new sites. The cancer is loose, it has broken tree, and the second generation tumors are often genetically evolved, with new properties. With each move, the cells become more primitive, evolving into a kind of ur—cell. There are cancers called "unknown primary"-- the cells are so plain their origin can't be identified. These are cells as psychopaths: twisted, clever, self—destructive, taking victims down along the way.

The number of cells involved is difficult to grasp. By the time cancer is detected, many millions of abnormal cells are present, and they are usually dividing rapidly. Treatment is a matter of killing as many of these abnormal cells as possible, as fast as possible, without killing the patient in the bargain. Most oncologists are reluctant to use the word "cure," and tend to speak of cancer as a chronic disease. The goal of treatment is remission, a state in which the cancer can't be detected. Remission doesn't mean there is no cancer in the body. Animal studies suggest that millions of cancer cells remain hidden in the person considered "cancer free."

The immune surveillance theory of cancer holds that in a way we all do have cancer, that a healthy immune system fights off rogue cells as they appear. (New research indicates that cancer in turn can shut off crucial parts of the immune system, actively dismantling what might attack it.) A person's immune system may be able to eliminate those remaining cells one by one, the way one fights a cold, and the remission will be durable. As with other chronic diseases, in theory cancer patients could simply continue to take anticancer drugs their entire lives—if the drugs were not so toxic.

5-K is on the same floor as the Robert W. Franz Cancer Research Center, and at any given time almost every cancer treatment is represented there. Patients are receiving various kinds of immunotherapy and chemotherapy, having radiation treatments, and recovering from surgery. There is often at least one person having a stem--cell transplant. Others are there because of the kinds of problems that tend to accompany cancer and its treatments, like infections. 5-K is a regional center for peripheral stem—cell transplants and one of only a few dozen centers for high--dose Interleukin—2 (IL- 2) therapy in the United States.

When I first started in the unit, I was told by more than one nurse, "If you can work on K-5, you can work anywhere." As a population, 5-K patients are sicker than most in the hospital, skirting the edge of instability and crisis repeatedly. They may stay for weeks at a time and return again and again over a period of years. Quite a few die there. Assignments on the three daily nursing shifts are doled out partly according to the level of care each patient requires and partly on the level of training of the nurses. My training as a 5-K floor nurse took more than a year and will never stop; it includes special instruction in chemotherapy, transplants, immunotherapy, and cardiac monitoring, and studying for my national certification as an oncology nurse. In the time I've worked there, we've had a wedding, a number of birthday parties, some anniversaries, many deaths, many emergencies, several resuscitations, the occasional family fight. There is no cancer demographic, no particular population: this is everyone, from everywhere. This is the musician who hauls her IV pole down five flights so she can play the grand piano. This is the young man covered in tattoos who was turned away from two emergency rooms for lack of money before he came to Providence and was diagnosed with leukemia. This is the young Mexican father who has no papers and has been treated without cost for years. This is the ice-skating instructor who had been a Sweetheart of Sigma Chi, the avid hiker who can no longer walk, the lawyer who likes to have whole pizzas delivered to his room from the joint down the street. They range in age from eighteen into the nineties, are all races, many nation-
alities, all degrees of wealth and lack of it.

Christa, a forty-four-year-old woman now in remission, told me that when she was first diagnosed with lymphoma, every-
thing happened terribly fast. "I was carried along in this urgent wave," she said. "People kept talking about getting second opinions, but it was so urgent I was just swept along." People with cancer are overwhelmed first by fear, then by information, then by noise and change, and finally by continual tiny losses that etch away at their sense of self like water on a stone. Modesty is one of the first things to go, and privacy hardly exists. People sometimes are admitted to the unit directly from the doctor's office, having just heard the news. There's no time to pack a bag; they are literally stripped before the day is done. I remember a man who buried his wife on December 22, and on Christmas Eve was admitted to 5-K, having been diagnosed with leukemia that morning. He sat up in bed with an unfocused, sagging shock in his face, barely answering my questions. He was facing a brand-new life, which had arrived without warning.

I think this is why most of my 5-K patients prefer watching Animal Planet to anything else on television.
They doze, they watch TV, and they chat desultorily with relatives, many of whom essentially move in for the duration. (We provide beds for them; after a few days the small hospital rooms are draped with drying laundry, suitcases, family photos, and knitting.) The patients walk the halls in varying degrees of boredom, anxiety, or persistence. Because of their low resistance to infection, many are strongly encouraged not to wander outside the
unit's small range. Most wear hospital gowns, women sometimes in nice pajamas or clutching a robe, men sometimes without shirts, all with the same gray slipper socks. They push their IV poles and look at one another: the thinning hair, the fuzzy heads, the bald heads, the occasional surgical mask, the gaunt faces, the reflections of themselves. You can tell which visitors are new: they are the ones who stop to read the inspirational posters with the careful concentration of schoolchildren. The veterans are in the kitchen, making a new pot of coffee.

I read the charts. I know what some of the code words mean, the scan results, the markers that indicate a good prognosis, a bad prognosis. One nurse sometimes wears a pin that says CANCER SUCKS. This is one way to put it. The very idea of what we do here, so peculiarly intimate, so daringly rude—the things we ask are so unfair, the disease itself such effrontery—and it is usually at this moment of reflection that my pager goes off and interrupts me. I don't have the right to know what I know about others, to see what I see of their secrets—how can anyone?—so I try to hold my knowledge as lightly as a fine glass vase, bound to break.

For many weeks, we cared for a young woman, a born-again Christian with non-Hodgkin's lymphoma. She came to 5-K for a stem-cell transplant. She was admitted to the large room usually reserved for transplants, the one equipped with special air filters to reduce contaminants. The night she finished the high-dose chemotherapy that starts the process, she was a bit nauseated but still feeling all right. Her room was madly decorated with drawings and dolls and quilts and flashing Christmas tree lights and signs and pillows. I slid quietly in and out of her room all evening, hanging and adjusting a blood transfusion, listening to her heart and lungs, checking the pump that delivered anti-nausea medication, testing her urine to make sure the drugs hadn't damaged her bladder. A group of friends arrived with a keyboard and a few guitars, and she sat cross-legged on the end of her bed, holding her face in her hands, while they sang to her. Hardly a word was said for hours, except in prayer.

That's one kind of day. Here's another: a forty-one-year-old woman diagnosed with lung cancer. She was athletic and had never smoked. She and the husband who clearly adored her had a toddler. After a month of arduous chemotherapy, her oncologist, Dr. Jeffrey Menashe, came to her hospital room for a talk. He is a tall, lean man and dresses in a pressed white shirt and dark tie when he visits his patients on 5-K. I listened while he told her ever so gently that the treatment hadn't worked. There is a new drug under investigation, he said. I can't make any promises, he said. "I'll do it," she said, and the tears were sliding down her face, dripping off her cheeks. "I'll do anything to live."

I asked Christa, who had lymphoma, what she remembered about being told she would need chemotherapy. "Oh,
just the word 'chemo'—just the idea of chemo," she said. "You've heard the most frightening things." Just that word, "chemo": an insider's word, diminutive, familiar. "Chemotherapy" actually means "any treatment with medicine," but in modem parlance it means only one thing—the cytotoxic drugs. And what a word—the root, chem, has the same Greek source as the word "alchemy": the search for a means of prolonging life, a universal cure for disease. The search for transmutation. My friend Sylvia, who survived Hodgkin's disease, said of her chemotherapy, "It's like going to a foreign country you've heard a lot of bad things about and never wanted to visit. And then you have to go there." After Sylvia said that, I began to call it Chemo World.

"Cytotoxic" means "cell-killing"; these drugs destroy fast-growing cells of all types. They are still the cornerstone
of cancer treatment, used before, during, and after surgery, radiation, and other treatments. There are many
dozens of cytotoxic drugs of several classes on the market, and more are being released all the time. To kill fast-growing cells in a living body in order to return it to health is a little like using buckshot to kill a cockroach on the picture window. Cytotoxic drugs can be teratogenic (causing fetal malformations), mutagenic (causing genetic
mutations), and, yes, carcinogenic. They also sometimes kill cancer, so most of us view them with trepidation
and hungry hope. Jeffrey Menashe imagines a day in his lifetime when we are done with cytotoxic drugs. He says,
"The whole discipline of oncology was built up around the fact that you have a class of drugs that is so toxic you need a discipline to manage it, which isn't true of any other kind of drug."

Most cells of the body multiply by division; they are magnificent duplicating machines. When more cells of a certain kind are needed, some of that type create enough material, genetic and otherwise, for two cells, and then
they divide—that simple, that miraculous. One of the hallmarks of cancer is that the cells continue dividing without cease, without regard to physical space, available nutrition, or any of the other controls that limit normal cell growth. They just keep multiplying—growing and dividing and growing again.

Cytotoxic drugs are classed by how they affect cells. Certain drugs are "cell-cycle specific," meaning they only kill cells at a specific phase in their growth cycle; others are nonspecific. One type of drug inhibits DNA repair and synthesis; another interrupts cell metabolism in a specific phase; yet another breaks the DNA helix strand in any phase. Some drugs are thought to kill in proportion to the dose—the more drug administered, the more cells are killed and have a "kill rate" for just what proportion of cells they destroy. Cell biologists and cancer researchers
may spend an entire career focusing on a particular gene expressed at a particular phase in the cycle of a particular kind of cell. They study things like the tumor-suppressor gene Smad4/DPC4 and how gelatinase B affects
the growth of tumors' circulatory systems, and they study them for years, money, and words spent on cancer,
many of the basic questions are largely unanswered. Walter Urba, director of the Robert W. Franz Cancer Research
Center, says, "We don't really know how all these drugs work. We think we know."

Tumors are heterogeneous, made up of cancer cells dividing and behaving in different ways. For unknown reasons,
cancer also tends to become resistant to the killing action of a given drug. To combat tolerance and attack these differently behaving cells, most chemotherapy is given in combinations. Combinations also allow a higher kill rate without overwhelming side effects. Few drugs' are used alone, and most are used for several diseases.

Many combinations exist in standard practice. My handy laminated booklet from Pharmacy Practice News lists four different regimens for Hodgkin's disease, fifteen for non-Hodgkin's lymphoma, and thirty-two for breast cancer. Well and good—except that with thirty-two regimens in use, which one would be right for me? This is where it gets tricky. The order in which the drugs are given, the rate at which they are given, and the amount of time between drugs are partly a matter of opinion. Any known genetic markers of the cancer and current research matter. But so do factors that can only be called political in nature: where and when a physician trained, the proximity of a teaching hospital, and insurance compensation can all affect the choice of a regimen.

One of the reasons for choosing a specific regimen over another is the patient, not the cancer. The therapeutic
index of a drug is the difference between the dose required to have a therapeutic effect and the dose that causes harm. Cytotoxic drugs have one of the lowest therapeutic indices found; there is often a very fine distinction between getting results and causing harm. In fact, taking patients as close as possible to the edge of tolerance often seems to increase survival rates, though some drugs have lifetime cumulative dose limits. A person with heart disease will not be able to tolerate the same doses and drugs as a person with a healthy heart. Moreover, the drugs are given to patients with stressed kidneys and livers, who may be recovering from surgery, who are taking many other strong drugs, who are malnourished, who are still suffering the lingering effects of prior chemotherapy and radiation. (They are given, after all, to people with cancer.) No one can predict how a patient will respond to any given drug; it may be genetically determined. There have been many disappointments in the research. Interferon, a cell protein, is one; monoclonal antibodies are another. IL-2, which is curative for a small percentage of patients, isn't much help to the rest.

"We're disappointed that we don't have a vaccine yet," says Walter Urba. "But there will be vaccines." Many will
be tailored to an individual, at a cost of many thousands of dollars. "If we figure out how to cure cancer," he adds, "we'll figure out how to pay for it." The hope in oncology is for more targeted therapies using drugs that interfere with cell growth in much more precise ways than
cytotoxic drugs. For example, a whole new class of drugs that affect estrogen synthesis has changed the treatment of breast cancer dramatically. A close friend of mine
was diagnosed with widely metastasized breast cancer more than two years ago. This disease is generally considered terminal, usually within a year or two. She has not had traditional chemotherapy at all. Her tumors have been controlled by a single oral drug, anastrozole, and one course of radiation. It won't work forever, but right now, with metastatic cancer, she feels healthy and well. The nature of discovery is surprise, points out Menashe. "We're in the fog still, and we don't know when we're going to break through. It could be tomorrow." Until then, cytotoxic chemotherapy is the cornerstone. The foundation, the bedrock, the core. The whole damned house, for a lot of people.


Liana Martin is the nurse manager of the oncology unit, where everyone knows her as Lee. She hired me to work on 5-K. She is fifty-five years old and has been a nurse for a long time, an oncology nurse for twelve years. Three years ago, Lee had her first routine colonoscopy. "When I woke up, the G.I. specialist said, 'Okay, we need to find you a surgeon.' I looked at her and said, 'Are you saying I have cancer!'" As soon as possible, she went to see Walter Urba, whom she counts as a good friend. "I said the worst possible thing I could say to him. I grabbed his hand and said, 'Walter, don't let me die!' "

Lee had colorectal cancer, which was already present in the lymph nodes. Urba prescribed a regimen of chemotherapy and radiation. Even with her experience, she was surprised at the uncertainty involved in the doses and in what to expect. "I wasn't supposed to lose my hair," she says. "It came out in handfuls. I expected to have some nausea, but we couldn't control it--I lost thirty--five pounds. The radiation oncologist said, 'Oh, it's the chemo,' and the medical oncologist said, 'Oh, it's the radiation." She had severe diarrhea.

She developed peripheral neuropathy, damage to the fine nerves of the extremities, which causes numbness, tingling, and pain. Then she also developed an unusual side effect called hand-foot syndrome, in which the hands and feet become red, swollen, and burning. The side effects were so severe that Urba had to interrupt her treatment several times to let her recover. On the one hand, she knew the drugs were dangerous. "The nurses hung up a bottle, and I knew it was poison; I was letting them put poison in me." On the other hand, she wanted those drugs. "It was really hard to stop. It felt like a failure. My failure," she says now. "I really was hindering my care in some ways. I had eighteen bouts of diarrhea in one day and I didn't call the radiation oncologist, I didn't tell him until after the treatment. And he was livid. I knew he would have held the treatment. That's how panicky I was." More than once, 5-K nurses called Urba themselves, because Lee was obviously sick and refusing to admit it. Finally, Urba dropped her doses by 20 percent. "That was really hard," she recalls now. "I wanted it, all of it, every bit, as much as possible." She wanted that poison, but she was out there, skirting the edge.

Predicted side effects are based on averages and on research, just like doses, and of extremes are averages made. The side effects are caused by the collateral damage of a treatment designed to kill fast-growing cells. Side effects can be immediate or delayed, brief or enduring, but they are almost inevitable. The picture window will shatter as the cockroach dies. I find that many people fear chemotherapy in an almost supernatural way; they have heard so many things about it; they tell one another tales about it, and some of the tales are true. Unlike most drugs, chemotherapy is hard to keep secret; it makes itself known in painfully visible ways. Losing one's hair is the biggest fear most people have. They know it is an irrational fear—it won't kill them, it's temporary. But hair is iconic and relational, a symbol of youth and sex and status, almost as important to the self-image as the face. To suddenly be without it is horrifying to many people, and to be without it because of a deadly disease is worse. Losing the hair means sickness, it means weakness, it means you are in danger of losing your life, and you see it in the mirror every day. No one really knows why chemotherapy makes hair fall out, a process called alopecia. The drugs damage the dividing cells of the follicles, in ways not well understood, so that the hair shaft weakens and breaks. Alopecia is not confined, as many people believe, to the scalp. People may also lose their beards, eyebrows, eyelashes, the hair under the arms, the pubic hair, even the fine hairs of the forearms and legs. (I've heard this large--scale baldness called "the total Yul Brynner.") We may not be covered in fur, but hair is protective. People get sunburns on their scalps or find they are cold all the time without hair's insulation. Without eyebrows and eyelashes, it's easy to get specks in your eyes, and when you cry, the tears spill out like water over a dam. After treatment, when the hair grows back (rarely, it doesn't) it may be a different texture, even a different color.

I've seen women weeping in grief over this dreaded loss, refusing to leave their rooms, but most people get used to it quickly. Perhaps it is easier when one goes to the clinic week after week, or spends time in the hospital and sees so many others—men and women, young and old—who all look the same. Nausea and vomiting is the other great fear before treatment and, unlike hair loss, may be more distressing than expected. Some drug stimulate various,
complex neurochemical pathways as they work, leading to activation of what is bluntly known as the vomiting center located in the brain stem. The retching that follows can be violent, sudden, and long-lasting. The surprise
for many people is that only some of the drugs do this. Cisplatin, one of the most common drugs in use, causes nausea in more than 90 percent of patients; vincristine, another common drug, rarely causes nausea. There are good, quite expensive, new drugs for nausea and some old standbys that work well for many people, but nothing is foolproof. Marijuana helps some people a lot. Many patients swear that a joint is much more effective than the pharmaceutical form, a pill called Marinol.' Oregon has a medical-marijuana law, but the law is problematic in ways I didn't foresee when I voted for it. One lymphoma patient, an artist, casually lit up a bong in his room on his first day on 5-K. This was a mistake in several ways—not least that he was sharing it with his friends—but it is how I found out that the entire building's no-smoking rule applies to this legal medicine as well. Since the medical marijuana law prohibits a licensed user from using it in public spaces, such as the hospital's outdoor smoking area, this patient found himself in a difficult position. One day his girlfriend began crying, begging for me to find a way for him to get some relief—“just one joint," she said earfully. I called security and explained the situation, and they told me the schedule of their rounds out in the parking lots. I told the patient and his girlfriend what I'd learned; they took a walk, and we didn't talk about it anymore.

Worse than the nausea for people is a condition called mucositis. Many drugs damage the DNA of cells in the mucus membranes of the entire digestive tract, from mouth to anus, as well as mucous membranes in the vagina. This damage and the release of inflammatory chemicals destroys tiny blood vessels and connective tissue, creating ulcers. Some patients are in such severe pain from mouth sores that they can't swallow or even speak. They require narcotics and may need days or weeks of what is called TPN, total parenteral nutrition, a metabolically balanced liquid given through the veins. (Now and then, if a patient has a certain sense of humor about his or her dark condition, the nurses will label the big, milky bag: "Steak, baked potatoes, apple pie," changing the menu day by day.)

Diarrhea is common as well and usually has several causes, including changes in fluid and electrolytes and direct
damage to the cells and normal enzymes. Christa described the result of her severe diarrhea as "scorched earth,"
a term accurate in both metaphorical and clinical ways. She was a little indignant even two years later. "Everyone
wanted to see it! You don't really want to show it to them."

These are the side effects patients dread, but there are many more they don't even anticipate. Although vincristine rarely causes nausea, it is renowned for neurological complications, one of which is constipation. Another is peripheral neuropathy, even at relatively low doses, and other problems like foot drop.

One class of cytotoxic drugs is the antibiotics. We don't tend to think of them that way, but antibiotics are cell killers par excellence, and some potent ones kill cancer cells by preventing DNA synthesis. They have a tendency
to color the urine--usually red, but in the case of mitoxantrone bluegreen. Some drugs cause rashes, or little
pustules similar to acne, or itching, or changes in pigmentation, or sensitivity to sunshine. Some drugs cause blurred vision and changes in color perception, or increased tears. There are drugs that reduce libido or
cause coughing. Paclitaxel, used for certain lung cancers, is known for causing severe joint and muscle pain. The
drugs can cause sterility. They can cause cancer. I’ve told my patients these things, the physicians have told them, we've printed out the information, read through the list of possible side effects with them, and repeated
ourselves, and they don't remember—they can't remember, it's all too much and too scary and too new. So their pee turns red and they think it's blood, or they forget about the sun and get a burn, and they cry, reminded. Reminded of so many things they want to forget. People want to survive; they are willing to do much more than they would have thought they could. Years later, people who are so happy to be alive, to be well, will tell you this most difficult time was a gift, that it changed them for the better, clarified their lives. But in the midst of it? "I'd rather die than not be able to knit," one old woman said to me', having refused any more treatment because of the risk of neuropathy in her hands. And she did die. I've seen people start puking as soon as I enter the room, hours before I bring the drug, because I am associated with it--my blue scrubs, the faint scent of soap on my hands, is enough. I've seen people so used to pain and so broken by it that they simply lie there, leaking tears, as I hurt them again. I've seen an engineer who runs a busy office, a man of authority, ashamed to silence by his diarrhea, like a bad child who cannot get to the toilet in time. Woven through all this is what we call fatigue. Cancer causes fatigue, and so do radiation and hospitalization and surgery, and so does chemotherapy. It is not a matter of being tired or depressed but something much more mysterious. Fatigue means a loss of vital energy, what some might call life energy, animation, reserve, or power. If you are tired, you can still run up a flight of stairs in an emergency. If you are fatigued, you may not be able to do that. Wanting has nothing to do with it. Just when you need a little extra, there is that much less.

I wonder sometimes whether this is one way the spiritual distress of cancer manifests in the body. We talk about contributing factors like anemia and malnutrition; we counsel light exercise and careful planning. But what about the loss of one's identity? What makes the self a self? With cancer and its treatments, the aspects of identity erode like sand in a tide, inexorably, constantly. You are a person who does things (work, family, hobby, art, sports), a person who fills roles (plumber, father, singer, tennis player), a person with an interior life unlike any other, and it all disappears. Who are you without these things? Who is the person who can't read a book or tie her shoes, can't make love, cook supper, or follow a conversation—who may never do such things the same way again?

Of all the effects of chemotherapy, that pesky therapeutic index is what keeps the nurses vigilant. When people die "of cancer," it is often not the tumor that kills them. Cytotoxic drugs can cause severe allergic reactions.
They can damage every organ, including the eyes and ears and brain. They can decrease the contractility of
heart muscle, make the lung tissue fibrous, erode the bladder wall so that it hemorrhages. They can, they have to,
take people out along an edge no one really wants to walk.

Most cytotoxic drugs damage the immune system to some degree by damaging the bone marrow. This is called myelosuppression; it follows the active weakening of the immune system done by many cancers and can be lethal. A myelo-suppressed person has too few specialized cells to fight infections, too few red blood cells to carry oxygen, and not enough platelets for clotting. Many people need blood and platelet transfusions. Sometimes, at a certain point in the collapse of the marrow, the chemotherapy simply has to stop until the person recovers. Infection is the most worrisome problem. The nadir for blood cells can begin a few days after treatment or weeks after treatment, and last a long time. People in severe myelosuppression can die from the normal bacteria on their own skin and in their gut, from a fungal spore on their pillow, a bit of mold from a vase of flowers, from a kiss. Suddenly outside the pale of ordinary life, they die of themselves, and the world. To protect themselves, people bathe every day, wash their hands constantly, wear surgical masks, avoid fresh produce and flowers and pets and children and crowds. To avoid bleeding, they don't use razors, dental floss, or tampons, or walk barefoot or have sex. In a neat reversal, this dangerous state is induced deliberately for stem cell transplants. Stem cells are both parent and child, able to become many kinds of cells, depending on the body's needs. Healthy marrow is always making stem cells. Autologous transplant is used mostly to treat cancers of the blood, like lymphoma, some leukemias, and multiple myeloma. It means harvesting the patient's own stem cells, deeply suppressing the marrow and cancer together, and then reinfusing the cells to kick-start the immune system.

When I first began working on 5-K, I made the common mistake of assuming that the transplant was the treatment, but in fact it's the antidote. The real treatment is the very high dose chemotherapy given first, the most intense chemotherapy a person can tolerate, a dose that is intended to destroy the bone marrow. Without an infusion of stem cells, the person will most likely die from overwhelming infection or hemorrhage. We call the infusion a "rescue." A person's cells are harvested by a special machine that filters stem cells out while circulating the blood, and the cells are then frozen. A few days or perhaps weeks later, the person moves into one of the big, specially
filtered rooms and starts the chemotherapy, which is tenderly called ablation. "Ablate" means "to remove, to melt, to vaporize," and with that, the countdown begins: Day -3, Day -2, and so on. Day Zero is when the cells are infused.

On Day Zero, the stem cells are thawed in a saline bath and injected into the patient's bloodstream with big syringes. There is a little tension in the air during the infusion--a kind of excitement, almost of celebration. Day Zero is a long-anticipated, hoped-for, feared day. One woman—the hiker who could no longer walk without an elaborate brace, her bones turned to cottage cheese from multiple myeloma—had her husband videotape the procedure. I tried to imagine watching it at home, over popcorn. Transplant is a struggle; patients are usually in the hospital for several weeks. It is only after the infusion that the side effects of the chemotherapy really kick in. Day +4, Day +7, and on and on. The patient feels wretched and can do nothing but wait for the cells to settle in the marrow. The transplant rooms are large because people need to stay in there; they have no immune system, so they need to avoid as much of the world as they can. They have big erase boards with calendars on them, and many keep track of their daily blood counts there. They read a little and watch television and sleep, and wait. And wait, watching the numbers. Chemotherapy can be horrible and it can be a breeze, and it is usually something in between. The side effects I've listed here are horrible; I find them hard to read. Is the life that follows the reward for all this suffering? Or is the difficulty itself a gift? I know that people suffer here. They also survive. Their hair falls out and then it grows back. They throw up, they lose weight, they feel weak, they feel embarrassed, and then they get better. People get better. People get well. A People go home.

After her diagnosis of colorectal cancer, Lee started weekly chemotherapy and fell into a rhythm of anticipation and recovery. On Wednesdays and Thursdays she'd have treatments and then rest for a few days. "On Sundays, I felt okay," she told me. "Mondays, I felt okay. On Tuesdays, I'd start crying." All of Lee's boundaries blurred together. She was a patient on 5-K after surgery; the nurses she supervised were bathing her. Her friends were giving her orders. "This is a journey, a path, and you do it with courage and dignity," she says now. "But let me tell you, my courage was dwindling—and my dignity! Now the peers that sit across the table from me are looking at my
butt! I found it very humbling."

We were sitting in her cluttered office in the center of 5-K when she told me this. Now and then the telephone rang, or a nurse poked her head in to ask a question. Lee had changed with treatment. Her blonde—highlighted hair was sparse and gray under a wig. She'd lost both eyelashes and eyebrows. Her tattooed eyeliner had sloughed off with a lot of other skin, and her face was coarse and spotted with brown pigment and tiny pimples. "I said to Walter, 'Look, I have to have cancer. Do I have to be ugly, too?'" She smiled grimly. "I woke up one day and thought, 'Oh, my God—I look like a cancer patient.' And that's one thing I didn't want to look like. I'd look in the mirror and think, 'This person could die.''' "Was there ever a point when you thought, 'It's not worth it?''' I asked. "No," she said, without hesitation. Then she looked into the distance for a moment. "Maybe."

There is a side effect little discussed by physicians and nurses, though it is a topic of much conversation among
patients. "For me it started with words," Lee says. "I couldn't find the word, and I'd have to describe something.
I couldn't work out if I was confused. I had to write notes a lot more. I'd forget things." Patients call it "chemo brain." It was dismissed for a long time by doctors as a symptom of stress, but oncologists now accept that cognitive dysfunction after chemotherapy is rather common and surprisingly durable. So little is clear in Chemo World. In unusual, complicated, and not well understood ways, chemotherapy affects the brain. It causes not only changes in function—electrical activity, chemistry but sometimes in structure, reducing the amount of white and gray matter. The effects are usually subtle; people complain of difficulty finding words, remembering what they've read. Many find it hard to do more than one thing at a time and frequently complain that they have a harder time doing arithmetic. Studies only now being done make it clear that the effects can last at least ten years after treatment and perhaps for good. At what point are you no longer yourself? What is worth dying for? "Chemo brain is scary," says Lee now. "You think to yourself, 'What if it doesn't go away? What if I'm going to stay this way?' We've had patients that we've taken so far out, and it seems like they didn't come all the way back. It scared the hell out of me. I'm still a little scared."

Chemotherapy is usually, but not always, given intravenously. It may be given over a few minutes, in an infusion lasting a few hours, or continuously for days. It may be given once, or on a schedule over months, but it is a ritual act. Because the drugs are teratogenic and carcinogenic, they are considered hazardous waste. Nurses and pharmacists who handle the drugs regularly are at risk of absorbing toxic amounts through the skin or by tiny,
aerosolized droplets. On 5-K the actual drugs are only opened under a ventilation hood, and once the bags are mixed, they are specially packaged and carried with chemo-protective gloves. The nurses hanging the bags wear chemo-protective gowns and goggles as well. I learned to give chemotherapy over time, first by study, then by observing, then by being observed. 5-K follows the standard method set by the Oncology Nursing Society. Patients are weighed and measured twice before beginning a cycle, and each day it continues. Their most recent laboratory results are double--checked before each dose, which is usually based on body surface area. Many cancer drugs can irritate veins, and a few can destroy muscle and skin, so the patient has to have a new or central intravenous line, if possible. (If the drug infiltrates the tissue, we treat it as an emergency.) The original medical orders, doses, and calculations are checked by two RNs and a specially trained pharmacist. The drug vials are double-checked. Everything is cosigned in several places. Finally, the patient is usually given premedications, to prevent nausea and other side effects.

When I prepare patients for their dose, I always warn them that I will be all dressed up when I bring the drug. I am sometimes rather formal and serious. I try not to use buzzwords, technical terms, or codes. I try not to say "chemo." "When I bring in your medicine," I ay, "you'll see me in special clothing. This is because the drugs are very strong. This is a good thing." This is a good thing, I tell myself. I come in, gowned from neck to knee, carrying the drug—the hope, the fear—in a special bag, carefully check the IV and the patient's name and birth date, and layout my equipment. Then I hook it up to the pump. Chemotherapy is given in precisely calibrated amounts, literally drop by drop, and so we use pumps that control the flow. I label and tape the connections carefully, while the patient watches, waiting. Sometimes we chat, but neither of us is fooled. Later, when the drug is done, I take it down with the same care and dispose of all the equipment in a special container in a locked room.

The ritual changed with a patient with mental illness. She believed that she was allergic to many substances,
including normal saline. Over the course of several difficult shifts, I had to find a way to give her a drug that could only be diluted in saline, when she insisted on dextrose. I didn't want to lie to her. I set up an elaborate (mostly dead--end) system of tubing and bags and asked a pharmacist given to incomprehensibly complex explanations to come in his white lab coat and explain it to her. She was impressed and bedeviled and let me give
her the drug, and I was pleased and a little ashamed.

Before I was allowed to give chemotherapy, I had to prove my skill. I also had to come to terms with what I was doing, knowing what would follow, knowing people would suffer, knowing many people would die anyway, knowing I was hanging up poison. One of the open questions about chemotherapy is when to stop. Brendan Curti, one of the oncologists who sends his patients to 5-K, says, "Some patients view the chemo as a prolongation of pain. Some patients view the chemo as part of their quality of life. And there are people here"—he rolls his eyes toward the rest of the office complex—“who think that doing everything we can means chemo until the last day of life. I don’t."

I had seen my mother die from breast cancer after a double mastectomy, radiation, and chemotherapy. The last year of her life was misery, and she kept hoping for a miracle, doing whatever the doctors said. Part of my job here is honesty, but a lot of it is having the strength not to impose myself. My integrity includes giving other
people theirs—the right to make choices unlike the choices I might make in their place. Some patients are in denial, others are not entirely competent. In an important way, whether or not one of my patients wants more chemotherapy when it's probably hopeless is really none of my business.

Jeffrey Menashe spent a summer vacation in Kenya, training oncology staff in a teaching hospital, where he saw
people die for want of blood transfusions that we do routinely. Menashe specializes in treating hematological
cancers and abnormalities of the blood, and many of his patients have leukemia. With leukemia, he says, the first issue is whether to treat at all; by the time of diagnosis, the blood may be more cancer than not, so sludgy with white cells that it can't move through the capillaries. Without chemotherapy, leukemic people can die within a month of diagnosis, but the treatment is hard to take and hard to survive. With most leukemic patients, the line between the devastation of the disease and the ruin of the drugs can be quite fine. "For a person who might have a 30 to 50 percent chance of being cured, people who are young and fit, you treat," he says. "But for older people
with a 10 or 20 percent chance, many say, 'The hell with it, I know I'm going to die.' And some people say, 'If I'm
going to die anyway, I'm going to go down fighting.' Unfortunately, the regimen hasn't really changed much in
many years. The current treatment is to poison the whole bone marrow and hope the normal cells will recover faster than the leukemia cells." The first cycle is called induction and will hopefully put the patient in remission.
Induction hits like a truck—strong drugs, high doses, long cycles, repeated cycles. Leukemia won't stay in remission long for many people, so they return for what is called consolidation chemotherapy. If they don't go into remission, they return for what is neatly termed "salvage."

A few years ago we tried to salvage a young soldier with leukemia. One night I started yet another cycle of
three drugs. By then he was emaciated, too weak to stand. He couldn't bear to have his burning feet touched; his throat hurt all the time, and his hair was nothing but pale patches. He had just turned twenty--one. Almost all of his problems were caused by the drugs, but without the drugs he would have been dead already. When I came in one evening, carrying my gown, gloves, goggles, and the bags of medicine, I saw that he was watching Team America: World Police on the unit's DVD player. He barely glanced at me as I went about the familiar task, his gray eyes large in his wasted face, watching the movie with a small, spacey smile. He had been in Iraq a few months earlier. "America! Fuck, yeah!"

Sometimes I think the doctors don't cry in front of the patients because the nurses do it for them. I hold a weeping woman in the utility room, because she has just confessed to me that her husband won't make love to her anymore. A longtime patient is told he doesn't have enough stem cells for a transplant, there is nothing more to do, and is sent home, and the head nurse cries as he goes. A handsome young man bleeds to death in the arms of a young nurse, and we all cry. We cry quietly, in private, not always in front of one another. There are times when tears seem the correct response. The mother with lung cancer took the experimental drug and her thick blonde hair fell out. She was too tired to read, too scared to talk, and her pain was hard to control. I still think about her face, other faces, the gradually dawning realization. I remember her pretty, ravaged face as she slowly realized she was probably going to die, and soon, and hard. In lonely silence in a strange room—a face bared, flinching in tiny tics of resistance, ducking this last punch, until it is irresistibly clear: I am not going to get better. I half-expect the earth to move in response, and perhaps it does.

"There are bad and difficult days, trying days," says Brendan Curti. "But you have to be optimistic to do this work. There is something spiritual and uplifting in it." There is in fact joy of a kind—this common struggle of people, undefended and bare. This is one of the flavors I taste in my tears. So many of them have died. The Sweetheart of Sigma Chi died. The pizza-loving lawyer died, the marijuana-smoking artist died, the mentally ill woman died, the poor man with all the tattoos died, and of course the young soldier died. We all knew he would. But not the pianist. I ran into her sister in a public bathroom, where we stood outside the toilet stalls as she told me my former patient was doing fine. And not the Bible student, who went home after more than six weeks of harrowing struggle. Not the hiker, whose bones healed after the transplant, who can hike for miles now. And Lee is well, though she still struggles with fatigue sometimes. She looks the way she did a few years ago—her hair is thick, her face clear and soft. She no longer looks like a cancer patient.

"I like the word 'remission,'" she says. "It means live every day as best you can. I have a 70 percent chance of long--term survival, which means a lot. But a 30 percent chance of relapse seems like a lot, too. I'm just now beginning to think about what's next. And how do you live without treatment? During treatment, at least you're doing something about your cancer. But I felt so good that Wednesday when I woke up and I didn't have to go to chemo.
"You walk in with cancer," she told me. "He says, 'You're in remission.' And you walk out free."

I don't like to hear cancer patients described as brave. Their virtue is going on, without much choice. How can we speak of degrees of courage here? To be sick this way is to have a kind of existential wound. One's life is taken apart like a motor, screws and facings laid along the table until it is just parts and nothing is left whole. I know I'm not brave, not the way that word is meant--stiff upper lip and all. When it is my turn, if it is my turn—I shake to think of it. I am surprised sometimes to hear the small murmur in the back of my mind, coming without warning. I am helping a trembling man my own age onto a commode, smelling his stale breath, and I think, I'm glad it's not me. The thought shames me, but there it is. Being brave is simply a matter of going on, because what else is there to do but this difficult thing--wait for me to come down the hall in my blue gown and gloves, and hang up a bottle of poison?