Closing in on a Killer :...
As it stands now, one out of every nine women will find a lump in her breast, go to her doctor’s office, and hear two of the most terrifying words in the English language: “It’s malignant.” Speaking (alas) from personal experience, learning that you have breast cancer is like being trapped on Mr. Toad’s Wild Ride. Ordinary life is in abeyance, days are spent lurching from specialist to specialist, careening between Fellini-esque medical procedures--bone scan, liver scan, biopsy--trying to make major life decisions, while struggling to remain in control.
It isn’t easy. But if there is a bright side to being part of a modern epidemic, it’s the abundance of literature available on this subject. Gathering information gave me a way to get a grip. While Betty Rollins wisely titled her moving 1986 account of her bout with breast cancer “First You Cry,” after the second or third box of Kleenex is depleted, the next step is obvious. Second, you read.
A warning: Coping with breast cancer tends to make you feel vulnerable. And some books are inherently more reassuring than others. A rule of thumb: Read what makes you feel better, not worse. With that in mind, here is a sampling from my medical bookshelf. In “Women Talk About Breast Surgery,” Amy Gross and Dee Ito have assembled a support group in book form to show women how to be “the smartest possible patient and how to get the best possible care for yourself.” This collection of conversations with women who have survived lumpectomy, mastectomy, radiation, chemotherapy, and/or reconstruction is compelling , comforting, alarming, infuriating, informative, and ultimately empowering. While the survivors’ stories are buttressed by useful interviews with experts on anesthesiology, plastic surgery, oncology nursing, radiation, chemotherapy and even insurance, the authors operate on the assumption that the patient is an expert too.
“The women we interviewed are models of the New Patient: well-informed, skeptical, opinionated, insistent on getting involved in treatment decisions,” they note. “These voices have all been to the front and returned to tell what happened.” To read the war stories is to gain valuable insights into what it’s really like to go through different cancer treatments (information that your doctor may be too busy or unable to supply), how it feels to live with one breast, the difficulties of juggling chemotherapy with a career, and the effect of cancer on a marriage.
These women offer helpful hints on decisions large and small. For instance; if you’re having a mastectomy “you have to take a button-up nightgown because you can’t lift your arm.” If you’re considering reconstruction, “study your plastic surgeons and don’t do it unless you’ve seen their work. You ask them not only for pictures, but you say, ‘I want to see a couple of patients you’ve done.’ And if they won’t show them to you, then don’t use them. You wouldn’t buy a car without driving it.” Perhaps the most helpful information was inadvertently provided by the woman who lamented that she didn’t bring a script filled with questions to ask her doctor. The authors jumped on the idea and have provided sample scripts for each procedure.
Still, this book is not for the easily spooked. Many of these women describe medical nightmares that I for one would not want to read the night before I entered the hospital. For example, one mastectomy patient recalls that “a doctor came into my room to get my medical history. . . . He said, ‘Describe why you’re here.’ So I said, ‘I found a lump in my right breast.’ He said, ‘Wait a minute, your right breast? Are you sure it’s your right breast?’ I said, ‘Of course, I’m sure.’ But her chart said the opposite.”
While the fact that so many women survived their ordeals is a testament to the skills of the medical profession, the disconcerting message of this book is Patient, Heal Thyself. “Sometimes, you have to tell your doctor what to do,” a woman declares. “That’s a horrible way to think about it, but you have to take the offensive many times.” If you prefer not to view breast cancer as sort of a guerrilla exercise in assertiveness training, than this may not be the book for you.
Dr. Susan Love is, or at least seems to be, the Marcus Welby of breast cancer, the doctor every patient who has ever spent three hours waiting for a doctor who spends 10 minutes without ever meeting her eyes wishes she had. A staunch feminist and advocate of patient rights, she co-founded and directed the Faulkner Breast Center in Boston. Recently, she moved to Los Angeles to develop and direct a comprehensive breast-cancer center at the UCLA School of Medicine. In a straightforward, clearly written, illustrated textbook, Love gives women the print equivalent of an expert second opinion, a user-friendly reference that explains everything you ever wanted to know about your breasts but were afraid (or didn’t know who) to ask.
Two-thirds of the book is devoted to breast cancer, with lengthy chapters on risk factors, detection, pre-cancerous conditions, treatment options, recurrence and rehabilitation. Love has a pleasant way of demystifying even the most ominous things. “Most hospitals have two or three kinds of operating rooms,” she notes. “I like to think of them as similar to restaurant types, in which the food is basically the same but there are different varieties served in different places and the rituals accompanying them are different.” And she reassures the reader about minor details: “Don’t worry: in spite of all the television melodrama, you’re not likely to reveal all your deep, dark secrets under Sodium Pentothal.” Yet she pulls no punches: Speaking of chemotherapy, she declares that “21 percent of women will have some weight gain while on treatment--gains of between five and 15 pounds. Fifty-seven percent will have hot flashes.” Some women may be uncomfortable with the amount of detailed information that she provides about precisely how cancer can kill you. Love fully understands. “Some women preferred to deny their cancer as far as possible, and have their doctor take care of it for them.”
The best thing about Joyce Wadler’s intimate breast-cancer confession is that it has a happy ending. As Wadler, 44, a former People Magazine reporter, puts it, “This is a modern story. Me and my cancer. I won.” It’s heartening to discover that not only did she live to tell about finding a lump the size of a robin’s egg in her left breast, but she still looks good in a strapless little dress.
Less might have been more. Wadler shares what seems like her every thought, feeling and action from the morning when she discovered the lump in the shower up until the night before this book was published. It is a grand tour of “Cancerland” that covers all the bases: surgery, radiation, chemotherapy, support groups, plus her family’s reaction and the effect of her illness on her boyfriend Nick. I picked him as a bad bet when he first appeared on Page 6 but the author didn’t dump him for another 115 pages.
When she’s not complaining about her relationship, Wadler is a shrewd observer. She paints a vivid picture of the medical obstacle course that a woman with breast cancer must run: “I am dealing with a growing group of specialists: a breast surgeon, plastic surgeon, oncologist, radiologist,” she writes. “Each specialist puts his field first and is somewhat ignorant, at times even disdainful, of the others.” She humorously conveys the frustrations of being forced to make a life-altering choice. “I know nothing about science. . . . I’m one of those people who’s still not sure what makes planes stay up. What this disease needs, I decide, is a contractor--or at least a place where we could get all the specialists in one room.”
Wadler’s plucky in-your-face attitude can be alienating. For example, referring to radiation therapy she blithely states, “I have no concerns about the process.” Call me a coward, call me hypersensitive, but I found lying motionless under a two-ton machine that was blasting me with 15,000 rads, trying not to stare at posted signs in the room that read DANGER RADIATION, to be a little unnerving.
“Cancer is a scary word, people hear it and think ‘death,’ ” says Wadler. Her account of her survival is a refreshing antidote to the folks who feel compelled to tell you about a friend of a friend who had it and isn’t doing so well.
