During a webinar with colleagues this afternoon, my cell phone rang. No caller ID. “Unknown.” Presumably, like all recent “unknown” callers, this would be one of my ever-expanding new network of medical professionals. Initially, I thought it was the cheery Maria from my dentist’s office, confirming a routine cleaning, but it was the other Maria, The Breast Surgery Coordinator, whose phone calls have become as vital to me as dispatches from the front. Two weeks had passed since last we spoke, so I knew this was about the BRCA gene testing. With a quick readjustment, I braced myself for Maria’s news and at the same time resigned myself to the likelihood of yet another decision tree, an “if this, then that.” There was no need. Her very positive “negative” rendered me speechless, and then the tears fell. Right there, in the middle of a Department of Education webinar about assessment practices, I broke down. Relieved beyond measure. Negative. No mutation in either the BRCA 1 or BRCA 2 genes. Negative.
Yes, Maria, said, this was very good news. (Good news for my left breast and my ovaries too, all of which my physician wanted to remove if the test been positive). And, it was good news for my daughter, just shy of her 14th birthday. Somewhere deep in my subconscious, I’m sure I was aware that while the BRCA genes may not be cause for concern at this juncture, it is still tragically possible – because we STILL haven’t figured out what causes or how to prevent breast cancer – that my daughter will one day find herself waiting in a doctor’s office trying to figure out if cancer is the result of her diet, her hormones, her environment, how much she exercises, or a genetic mutation.
Today, we know what to do in the short-term. The negative BRCA results mean another box is checked and we can schedule the surgery. ‘Tis the holiday season which adds an extra layer of inconvenience for those charged with coordinating the calendars of three highly sought-after surgeons, one of whom currently practices out-of-state. There are other players, some with whom I will never interact, but without whom my surgery will be impossible; some of whom will flex their muscle in ways that can delay my care. Authorizations. Approvals. In-network. Out-of-network. If this, then that.
If this, then that.
Breathe. If the BRCA is negative, then it’s a “simple” mastectomy and DIEP Flap reconstruction. If this, then on a day next month, over the course of 8 hours, three brilliant surgeons will perform a skin-sparing mastectomy of my right breast and, using complex microsurgery, will reconstruct it using fat, tissue, and skin from my abdomen. Too, they will perform a sentinel node biopsy, to determine if any cancer has spread to the lymph nodes. If there is, then there may be radiation. Post-surgery, the tissue samples will be sent to the lab, and the pathology report will tell us more about the biology of my tumor. Within two weeks of surgery, we will have the Oncotype DX test results to help my future oncologist decide if adjuvant chemotherapy would benefit my treatment. If my Oncotype number places me in the “high risk” group, then chemotherapy will be recommended in addition to hormonal therapy.
Chemotherapy frightens me as much, perhaps more, as hearing my own diagnosis. Hollywood, my imagination, and stories of families back home who have witnessed loved ones wrecked by its side effects are all at play. Chemotherapy conjures visions of Meryl Streep as the dying mother of a daughter in One True Thing, or Kate, ravaged by leukemia in “My Sister’s Keeper.” I know these are make-believe characters played by actresses made-up to make me believe they are ill and dying. Very different, they are, from the women whose healthy fresh faces smile up at me from stock photos in pamphlets that fill the obligatory tote bags provided by well-meaning health care professionals at every stop thus far in cancer land.
The day I shared with our girl that I had cancer, her eyes landed on that first tote bag, and she asked with just the right amount of disgust, “Seriously, mom? They gave you a goody bag?” Apropos enough. Emblazoned with a festive pink ribbon, what else could it be? Within the pages of the magazines, I will find stories of survival, of winning the war, of celebrities coping with cancer. All very feminine and glamorous. There’s advice on the best places to find flattering wigs and turbans and scarves and even stencils to draw in eyebrows because “many women might not be able to remember where they used to be.” As familiar as i think I am with the arch of my brow, the drape of my breast, the curve of my belly, it hasn’t occurred to me that there is a chance I won’t remember the way these used to be. I hadn’t thought about losing eyelashes and eyebrows, or that I may have to learn how to tie a scarf so I look better while chemotherapy does its work on lingering cancer cells as well as hair follicles and every other cell in my body. Hair-loss, albeit temporary, is a distressing possibility – eyelashes and eyebrows, the hair on my head. As are the retorts, “it’s only hair – it will grow back,” or “your bald head will show the world you’re battling cancer and winning.” For the record, I am an unwilling conscript in this battle. I would gladly hand back the medal.
In my quietest moments, I try to trace this fear to its source. One of my favorite writers, Edna O’Brien, tells us we can never escape the themes of childhood. And so, maybe it was my mother who often alluded to the Bible, referring to a woman’s hair as “her crowning glory,” or the whimsy of my grandmother comparing my hair color to that of a new penny. More harrowing perhaps, is my recollection of stories in the news, when I was a little girl with very long hair, stories of young Roman Catholic women who were tarred and feathered, publicly humiliated for having associated with British soldiers in the late 1960s in Northern Ireland. To this day, I am haunted by the thought of a barbaric punishment that left them shorn and exposed. Whatever its source, this fear of chemotherapy is irrational, and it feels shallow to have spent at least a part of each day since I first heard “tumors,” fretting about the fate of my hair.
If chemotherapy is recommended in the future, then I will consider, with an oncologist I haven’t met yet, whether it makes sense for me. We’ll play the numbers. Today, however, we will focus on the upcoming surgery. Overwhelmed by its complexity, I turn to the contents of the tote bag, quite sure I’ll find something in the literature that will put my weary mind at ease. Sure enough. On the list of “tips to prepare for surgery,” and “how to stay positive,” there is, in italics, a suggestion that, prior to mastectomy, women just like me often throw a party, a ceremonial ritual to say goodbye to my breast(s). Really. Perhaps, as my husband so irreverently opined, we could cover it in frosting and stick a candle in it.