Diary of a Woman Who Scares Cancer
Friday noon. My phone rings. It's my gynecologist. This is odd: I'm not due for another pap smear for at least six months. I don't immediately associate her call with the biopsy I had two days prior because another doctor had ordered it. Unsure of how to break the news (and English not being her first language), she initially tells me that the results of my "psychology" reports were bad. "Pathology," I automatically correct her, though aware that either was equally plausible.
I still have the slip of paper that was next to my phone on that February afternoon. It reads breast cancer in large letters across the top, as if I feared I would forget what she had said after I hung up the phone. The rest of the paper is covered in words I could hardly spell, much less fathom what they would mean for my life: oncologist, lumpectomy, sentinel lymph node biopsy, chemotherapy.
The first thing that cancer teaches me was that all of my friends take long lunches on Fridays. Since I hadn't told my parents about the biopsy (why worry them when the doctors told me the lump was sure to be a benign cyst?), I pick up the phone and call my brother in Florida. No answer. I start with my friends in Pittsburgh and then elsewhere. Voice mail. Answering machines. Cheerful secretaries.
I sit on my couch. I can't cry; I can only write. When I can't write anymore, I get on-line and look up breast cancer. Perversely, searching for topics related to breast cancer gets me bombarded by virtual ads for breast augmentation. I finally arrive at the medical Web sites. Amid the optimistic discussions of advances in chemotherapy, new surgical strategies, and cutting-edge radiation therapies, this statistic sticks with me: Women diagnosed under the age of 35 have the lowest survival rates of all breast cancer patients. By the end of the day, I have a stack of printouts and a folder labeled breast cancer. I file it behind air miles and close the drawer.
The average age at diagnosis for breast cancer is 64. I'm 31. I just started teaching in the English department at the University of Pittsburgh. I just started writing a book on Chaucer and medieval labor history. I can't have cancer.
"I've always been someone interested in the big questions. If I've done my job right, I lead women through a frightening time in their lives. It's important to explain treatment options in ways that make sense so that patients feel comfortable with the difficult decisions they have to make." So says Dr. Adam Brufsky, medical oncologist and associate director of the Breast Care Center at Magee-Womens Hospital, in Oakland. On this chilly fall afternoon, the hospital lobby is filled with two types of women -- the big-bellied and the bald -- each rushing to their respective appointments; everyone, it seems, is either having a baby or having a biopsy.
A genial 40-something in a Jerry Garcia tie, Dr. Brufsky is responsible for many of the bald women. I first met him eight months ago when he arranged my course of chemotherapy. Today, I am asking him what it's like to work every day with women who have cancer. Oncology is not, after all, dermatology. Every day he has to pitch what is arguably a hard sell: Give up six to eight months of your life now in order to outmaneuver a possible future recurrence. When he's not weighing regimens of chemotherapy with his patients, Dr. Brufsky is supervising clinical trials in breast cancer treatment: "It's really satisfying to be able to translate this clinical research into real possibilities for my patients," he says. Women with advanced metastic breast cancer who don't respond to one type of chemotherapy may eventually respond to other mixtures of drugs. It's partially about trial and error, finding the right combination of drugs, even if it's on the tenth time around. In this sense, breast cancer is a "treatable" cancer in medical parlance. Few women hear the words, "It's breast cancer; you have six months to live." These days breast cancer is even compared by some to chronic asthma: Manageable for most, but no fun.
When I got cancer, I finally quit smoking. Though it did seem a little unnecessary: I had breast cancer, after all, not lung cancer. My surgeon had confirmed that the two aren't related. So what was the likelihood I was going to get lung cancer too? I know. Since I had beaten the odds once so successfully, I shouldn't play them anymore. I quit smoking out of a sense of shame rather than any feelings of medically necessitated guilt. I stopped, not because I knew it was good for my health, but because I knew how stupid I looked to everyone else with a cigarette in my hand. So I quit. Not counting the odd cigarette here and there -- the cigarette on my birthday, the cigarette when my best friend is in town, the cigarette necessitated by the stress of having cancer.
An early March morning and the sky is bright blue. Same as my urine. Not just yellow tinged with blue but bright, racecar blue. As the anesthesia was wearing off last night, I threw up a whole toilet bowl full of clear blue liquid. It's the morning after my surgery. The surgeon had injected blue dye around the pea-sized lump he removed from the top of my right breast. I feel like a cyborg or a spider, blood replaced with viscous blue fluid. I can't lift my arm above my elbow. My mom knocks on the bathroom door: Do I want to go to Pamela's for hotcakes with strawberries?
A week after my first chemotherapy session, I go to the cancer support group. Late, I round the corner hesitantly to find a circle of about 15 women. They all have very, very short hair. They are all at least 10 years older than me. I nearly turn around and leave. No way is this my life. But they have already spotted me and are making room in their circle. They are briefly introducing themselves in turn, giving details of diagnoses and treatments. I count how many people are between me and the woman talking about her mastectomy. I don't think I can speak. I am a university professor; I speak in front of large groups every day. But this isn't Chaucer or Jane Eyre. When it is my turn, I somehow manage to say: "My name is Kellie Robertson. I am 31 years old. I was diagnosed with breast cancer two months ago. I just had a lumpectomy with a sentinel lymph node biopsy. Lymph nodes negative. Estrogen receptor negative. I've just started three months of chemotherapy to be followed by six weeks of daily radiation."
My oncologist Dr. Brufsky recently received $1.8 million in funding to run a clinical trial of new drugs to fight breast cancer. But the money came from neither the National Institutes of Health (NIH) nor the National Cancer Institute; instead, it came from the Department of Defense. Why is the Department of Defense funding breast cancer research instead of bombs? Welcome to the idiosyncratic politics of breast cancer research funding in this country. In the early 1990s, several grassroots groups including the National Breast Cancer Coalition got fed up with how little money and effort was being spent directly on preventing and finding a cure for breast cancer. These activists did an end-run around scientists at the NIH (whose research objectives they felt were failing the tens of thousands of women dying from the disease every year) and began intensive congressional lobbying. In 1993, Sens. Tom Harkin (D-IA) and Alfonse D'Amato (R-NY) added a rider to the Defense Appropriations Act that set aside $210 million for a peer-reviewed breast cancer research program.
Was this a backdoor, middle-of-the-night legislative deal using money earmarked for something else? Yes. But once it passed, no politician in his right mind was going to try to repeal it. The Department of Defense is now one of the largest funders of breast cancer research, and a significant portion of that money finds its way to Pittsburgh each year.
End of April. Don't get cancer if you don't like needles. I'm sitting in a chair that looks like a La-Z-Boy recliner with arm restraints. The oncology nurse is trying to float an IV in the veins on the top of my left hand. I've got narrow veins and it's a large needle. From the top of the cooler filled with my drugs, she reads my name and I own it to be mine. We do this every time. I'm still Kellie Robertson; I still have cancer; I'm still about to be pumped full of adriamycin and cytoxan. I've just read the release form listing the possible immediate and long-term side effects of these chemotherapy drugs: "nausea and/or vomiting, hair loss, fatigue, tissue damage if the drug leaks out of the vein during administration, ... heart damage, and the remote possibility of death." Please sign on the dotted line.
I watch as the nurse slowly pushes a large syringe of red fluid into the IV. If this drug were a lipstick, it would be called "madder carmine." I spend about two hours hooked up to a drip pushing various chemicals through my veins. First you feel prickly, then you feel cold, then you taste odd things in the back of your mouth, then you feel thirsty. But don't drink too much water because you can't go to the bathroom with all this gear attached to your arm.
An architect friend once told me that he prized turn-of-the-century salvaged iron because iron mined after the first nuclear tests was less structurally sound, having been altered at the molecular level by this event. My body, after chemotherapy, is like this metal.
Vita* was 35 when she noticed a lump in her right breast one night. The lump turned out to be one of two tumor sites in the breast. Six months later, Vita's mother was diagnosed with breast cancer. Vita's doctor hadn't mentioned genetic testing the first time around, but when she and her mother left his office this time, they were each carrying a pamphlet describing the benefits of this testing.
In the 1990s, scientists identified two genes (BRCA1 and BRCA2) that, when functioning properly, are thought to help suppress the growth of cancer cells. The presence of inherited genetic mutations or alterations in these genes is associated with a higher risk for developing breast cancer. Women already diagnosed with breast cancer who show an altered BRCA1 or BRCA2 gene have a 50-to-65 percent likelihood of developing more breast cancer. While only 5-to-10 percent of all breast cancers are the result of this hereditary anomaly, those women unlucky enough to be such anomalies have a substantially increased risk for developing not only more breast cancer but also ovarian cancer. Breast cancer is child's play compared to ovarian: There are currently no reliable screening procedures for it and, once diagnosed, survival rates are relatively low.
Vita threw her genetic testing pamphlet in the trash when she got home that day. Why won't she even consider genetic testing? "First, I already know I'm at high risk for developing more cancer; I've had it once and that's the single most significant indicator for having it again. Unfortunately, we all know that lightning does strike twice. Secondly, I wouldn't live my life any differently if I found out that I carried this genetic alteration. I'm not going to have another mastectomy 'just in case.' I think that would be a little hysterical. Just because you show the genetic mutation doesn't mean you are necessarily going to get cancer again."
Genetic testing is also a costly option at $2,600. Most insurance companies refuse to pick up the tab; this is just as well, since most patients wouldn't want their insurance companies to have the results. No federal legislation currently protects from employment discrimination those genetically predisposed to cancer, and there is only limited protection against health insurance discrimination (and even this protection has yet to be tested in the courts). Some individual states have passed laws prohibiting genetic discrimination, but Pennsylvania is not among them. Federal legislation has been slow in coming because a strong health-care lobby objects to taking genetics out of the risk pool formula on which the entire insurance game is based. Insurance carriers argue that it is not fair to be compelled to protect high-risk individuals who show these types of genetic alterations. But one does wonder what will happen when genetic testing becomes more common. Everyone is going to be predisposed to something.
As a professional in the field of information technology, what bothers Vita most about genetic testing is what might be done with the information beyond hospital walls. "I have no confidence that we know how to handle this information right now. I'm not certain we have the ability to make good health-policy decisions based on our understanding of what genetic predisposition may mean and there are no policies in place that effectively protect people against genetic discrimination. I don't hide the fact that I am a breast cancer survivor but, by the same token, I don't feel the need to let people into my genetic knickers."
"The most gratifying thing about my job is that I get to see women in this state of incredible vulnerability but also, paradoxically, at the peak of their strength. Look at a 99-pound bald woman going through chemotherapy and you can see something truly terrifying in her eyes. But it's only terrifying if you are a cancer cell." Suzanne O'Neill is a genetic counselor at Magee-Womens Hospital, where she spends her days talking with women who scare cancer cells. O'Neill has designed a computer program that assesses a patient's risk for carrying the BRCA1/BRCA2 genetic mutation, helping the patient to decide whether or not to pursue genetic testing.
Breast cancer genetics is a numbers game; risk assessment is all about statistical probability. Genetics counseling isn't just about delivering bad news, however. According to O'Neill, most women substantially overestimate their risk for breast cancer; for this reason, the screening process can actually be reassuring for many women. It may even provide a measure of comfort to women already diagnosed with breast cancer. If you have just one other relative with breast cancer, your cancer need not necessarily be hereditary. It might just be chance.
Research in breast cancer genetics has played a key role in debunking breast cancer myths such as the prevalent idea that women can inherit breast cancer only through their mother's side of the family (not true). While acknowledging the potential psychological downside to genetic testing ("You can't close the barn door once the horse is out"), O'Neill is an eloquent advocate for its benefits. It provides increased opportunities for prevention within families who show the genetic predisposition. It can help women make important surgical treatment decisions, particularly in the case of high-risk women who may be inclined to choose a prophylactic bilateral mastectomy (surgical removal of both breasts) over a single mastectomy or lumpectomy in order to minimize chances of a recurrence a few years down the road. It can help scientists determine whether specific regimens of chemotherapy are more effective in women who are genetically predisposed, thus allowing doctors to tailor chemotherapy to fit the individual patient's needs. But ultimately, according to O'Neill, it's really about families: "Most women come to us for their children, their sisters, their cousins, their nieces. They want to know so the people they love will know."
I shave my head the week I turn 32. If you've ever been troubled by a bad hair day, try a no hair day. Multiply by six months. My hair was slowly falling out as a result of the chemotherapy, and I finally decide that I'd rather see it all on the floor of my hairdresser's salon than face small clumps of it on my pillow every morning when I wake up.
Shaving my head isn't difficult. Watching all of my eyelashes and eyebrows fall out -- now that would prove to be difficult.
I had ordered a wig a week earlier. Before I started chemotherapy, I had short, almost black hair with what a friend rightfully calls "Bert and Ernie" eyebrows. At first I decide to go blonde. I'm not going to feel like myself for six months, so why should I look like myself? The result is less Marilyn Monroe than Marilyn Manson. Finally I let myself be talked into a dark-brown bob with straight bangs. I pretend for a while that it is very Uma Thurman in Pulp Fiction but it is actually just Stepford wife gone wrong. And I can't shake the feeling that I am a woman imitating a man imitating a woman. I wear my wig only twice during the entire six months I'm bald. Once is home from the fitting with the wig maker. The second time is to a review hearing at the offices of my insurance carrier, UPMC, where I try to convince them to pay for it.
Wigs and insurance companies are like oil and water. I think of my wig as a legitimate side effect of chemotherapy. My insurance company pays for the anti-emetics to stop the nausea, so why not the wig? Since my policy covers "medically necessary prostheses," my doctor obligingly writes me a prescription for a "cranial prosthesis." UPMC isn't buying it. My psychotherapist writes a letter describing the deleterious professional and emotional consequences of hairlessness on university professors. No way. I pursue my claim through two separate grievance procedures. They get better at saying no.
I spend many hours pestering UPMC, not because I am desperate for my $202.60, but because most women diagnosed with breast cancer are not part of the MTV generation and, unlike me, they aren't comfortable appearing in public with only a backwards black Kangol to shield their bald scalps from curious eyes. Insurance companies rightly cover reconstructive surgery after mastectomy not because it is "medically necessary" (news flash: breasts are not medically necessary) but because it serves the emotional well-being of the woman. Hair also serves the emotional well-being of women, particularly those women who have recently lost other body parts crucial to their gender identity. Until our culture allows for a woman to be bald and, if not beautiful, at least still a woman, insurance companies should put their money where their (patients') hair is.
April. I continue to teach. The only time I don't think about having cancer is when I am in the classroom talking with my students about the Canterbury Tales or Malory's Morte d'Arthur. When I tire of grading essays, a friend suggests a rubber stamp that says "Breast Cancer: Do Not Disturb." On the last day of term, a student suddenly resurfaces whom I haven't seen for seven weeks and who has done no work for the class. The dog-eared doctor's note he shows me says: Mononucleosis. I refrain from pointing out that I had cancer and missed only two classes.
Mother's Day. I was planning to run the Susan G. Komen "Race For The Cure" this morning. But it's two days after my third chemotherapy treatment and I'm throwing up in my bathroom instead. My parents have driven up from Virginia for the weekend, so they walk it for me. My mother is also walking it for herself. When I tell people that my mother was diagnosed with breast cancer seven years ago at the age of 58, they usually nod knowingly as if this occurrence explains why I got breast cancer at 31. Am I in that 5-to-10 percent predisposed to breast cancer? I don't know. But I can find out. The National Institutes of Health in Washington are currently running a clinical study that provides free, anonymous genetic testing to women already diagnosed with breast cancer. I fill out the 10-page medical history form and send them copies of my medical records. I wait to hear back from them.
Cancer, like other chronic illnesses, destroys the narrative of your life. I don't mean "interrupts"; I mean it radically undermines notions of beginning, middle and end. Most of us, consciously or not, hold to the idea that our lives are a story (even if we are unsure whether we are narrating it or merely the object of narration; even if the plot is boring or needs editing). At 31, I am supposed to be in the middle of my story, chapter 6 rather than, say, chapter 16. All of a sudden I've found myself in a postmodern novel without chronology rather than the leisurely eighteenth-century novel that I had always envisioned my life to be. Somehow I've ended up as a character in an Alain Robbe-Grillet novel rather than the Jane Austen heroine I'd always fancied myself. I'm also pissed off that I might not get my last 200 pages.
It is November 1, la día de los muertos, the Day of the Dead. It has been nine months since I was diagnosed with cancer. I am supposed to be in Washington today at the National Institutes of Health for the genetic testing trial. Instead, I am standing on a street corner in a small village in central Mexico, arguing with two of my best friends over where to go for dinner. The streets around us are filled with music; vendors sell papier mâché skeletons and sugar skulls; women carry flowers and candles to the cemeteries. Tonight my friends and I will set up an offrenda to our dead, an altar with their pictures and favorite foods. Unfortunately for my grandfather, there are no grits to be found. We tell stories about the family members and friends who aren't here with us any longer; we toast the good fortune that has allowed us to be here together. If I want to contemplate my own mortality, there are places other than the NIH where it can be done.
* Vita, like the other cancer patients quoted in this story, is a member of the writer's cancer support group. Her name, and those of other patients, has been changed.