Pre-empting cancer, and the physical toll
Some readers might remember me. I wrote a column for Newsday for more than a decade, ending in 2004. The photo accompanying the last column revealed my new, short haircut and a slightly photo-shopped jaw-line. That column was a goodbye of sorts, chronicling my life in the allotted 800 words. I was deluged with well-wishes from readers.
My husband had taken early retirement from the university where we both taught writing, and he did all the errands, grocery shopping and cooking. A few years later, I retired, planning to finish a memoir titled "Leaving Long Island." I thought of settling in for a peaceful retirement with time to write, healthy grandchildren, a solid financial portfolio and a happy marriage -- but some things change.
For most of my adult life, I've lived in Iowa, where my first husband got a job, but I've always thought of myself as a Long Island girl. I was 10 years old in 1956 when my parents bought the split-level in Plainview, and there were flocks of kids who, free from the confines of the city, played outside everyday. We explored the vacant lots and construction sites where new houses were springing up overnight. What used to be potato fields became suburban neighborhoods. Since then, we've learned about the high rate of breast cancer on Long Island, and I've thought about the pesticide that used to be in those fields, perhaps contributing to the epidemic.
But it was heredity that linked me. Because my mother, aunt, grandmother and cousin all had breast cancer, I decided to get genetic testing. Turns out, I was positive for carrying BRCA1, an inherited gene mutation. I had dodged the bullet for years, but statistically it was likely that I, too, would get breast or ovarian cancer. Among Ashkenazi Jewish women -- there is a high proportion of us on Long Island -- there is a 1-in-40 chance that a woman is BRCA positive. This is not an exclusive sorority.
Within only a few months of getting the BRCA diagnosis, I underwent prophylactic surgeries: an oophorectomy (removal of the ovaries and fallopian tubes) and then a bilateral double mastectomy. I also decided, after long and harrowing research, not to have reconstructive breast surgery. This surprised almost everyone -- including me!
Everyone had a different response. My husband said, "Honey, it's totally up to you." My cousin said, "I think you will be sorry." My daughter said, "I am so proud of you, Mom." My granddaughter said, "Will Papa still want to be married to Grandma if she doesn't have breasts?"
I can't say that I reached a decision with certainty. Most likely, I would have chosen breast reconstruction if I were younger. Or large-breasted. Or not in a long, loving marriage. It had been hard enough to decide on operations to remove the perfectly good organs on my healthy body when I didn't even have cancer.
It was after my surgery that I attended the annual FORCE convention in Orlando. FORCE (Facing Our Risk of Cancer Empowered) offers comprehensive information about inherited cancers. I am called a "previvor," someone who has the genetic predisposition for cancer, but not yet a positive cancer diagnosis. There I connected with women who shared their own difficult choices with grace and generosity.
There were about 400 women in attendance: cancer survivors, previvors like myself and health care professionals. There were mothers and daughters and sisters, some with the cancer gene, some not.
As in any women-centered place, there were lots of laughs, tears and intimate talk. I was used to this kind of sharing. I was someone whose coming of age in the 1970s included a consciousness-raising group where there were mirrors and speculums. And yet, there I was, 65 years old and totally gobsmacked by the most feminist experience of my life.
The "show and tell" event was in the evening, after a day of lectures and panel discussions. There was an open bar and, behind a curtain, another room: "Women Only." After two glasses of chardonnay, I went behind the curtain.
And there they were: about a dozen or so women, casually standing around, drinks in hand, as if we were at the most ordinary cocktail party. The women were naked from the waist up. Each uncovered woman stood in front of a sign that explained the choice she had made: "silicone reconstruction," "saline reconstruction," "DIEP Flap reconstruction." And a few, like me: "no reconstruction."
There were young women and gray-haired women; there were flat women, fat women, one-breasted women, no-nippled women and women with Playboy quality breasts. There were women who had breasts reconstructed from their belly fat or their buttocks. There was a woman not more than 30, chemo-bald, with no breasts and the lithe, sinewy body of a dancer. There were women who had reconstructed breasts with nipples tattooed the color of caramel. All were in high spirits, chatting amiably. The rest of us walked among them, asking questions. We were allowed to touch. There was much laughter and camaraderie. Sisterhood is powerful, but never have I been in such a clearly women-powered, assertive place.
I would make the same decisions again: Getting the genetic testing, doing the surgeries and choosing not to have breast reconstruction. Not having breasts has been mostly an annoyance, not a devastation. I don't feel less of a woman. Or certainly less like me.
I'd chosen not to have breast reconstruction, but I know that this isn't the right choice for everyone. In all honesty, there are times I believe it was not absolutely right for me. Sometimes, I take a handful of belly and imagine it gone, placed where breasts would be. Then, I remember additional surgery. Healing. All the reading I had done about possible complications. Or living with something foreign in my body and being uncomfortable.
If I knew reconstruction would be easy and uncomplicated, perhaps I would have done it. But nothing ever is.