Violation

by Sallie Tisdale

  Christa, a forty-four-year-old woman now in remission, told me that when she was first diagnosed with lymphoma, everything 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. 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 modern 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, from every angle. But for all the time, 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 drugs 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.3

  It’s so difficult for researchers to get permission and material to do tests on marijuana in people with cancer and AIDS that much of the information available is anecdotal, but there is a lot of that.

  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 tearfully. 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 many 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.)