In the BRCA community, Mother's Day isn't a very happy occasion. Many of the women of the BRCA sisterhood (and men, let's not forget them) have lost their mothers, grandmothers, sisters, and aunts to breast and ovarian cancer. They've watched them suffer and succumb. And they've inherited the gene that caused their mothers and grandmothers and aunts and sisters to get sick. And they fear a similar fate.
I'm in a little bit of a different position. My mother, at 61, is alive and well. Aside from a few scares (lumps and bumps whose pathology has come back benign), she has healthy breasts. But, of course, she is BRCA negative. I didn't get the gene from her; I got it from my father. My paternal grandmother, my father's mother, had breast cancer twice and survived it both times only to succumb to a stroke. But I didn't inherit BRCA from her, either. I inherited it from my paternal grandfather, my dad's dad. (And for those keeping score, my grandmother's cancer could have indicated a BRCA mutation, too, given that her family hails from the same region of the world as her husband's, but my father and his brother, my uncle, who would have inherited it -- if indeed there was anything to inherit -- tested negative for any other abnormalities.) My father, at 62, is cancer-free. My uncle, at 59, is too. My grandfather, who lived to be 87, had both prostate and colorectal cancer but didn't die from either. All the lady cancers, all the breast and ovarian disease, is on a part of the family tree who branches grow far away from mine.
Aside from my grandparents, my aunt, uncle, and cousins, and my immediate family, I didn't know my grandfather's siblings and their offspring very well, even though most of them lived nearby. (My grandfather had six sisters and two brothers, all but one of whom died from from cancer. Their children, my second aunts and uncles, all have had cancer. Now my second cousins, some of whom are close to my age, are getting sick.) We saw the extended family once a year for Thanksgiving dinner. In the rented basement of a Ukranian Orthodox church, three and sometimes four generations of family would convene, year after year, for a buffet style feast that began at 2 p.m. sharp. As a kid, it seemed to me there were hundreds of people there, all of whom knew me but whose names I could never remember learning (it's a perennial source of embarrassment that even now I know so few -- at my grandfather's funeral last summer I had to keep asking my father who it was that was hugging me -- and have learned many of their names only now that I study the family cancer history and see their dates of death and the ailments they succumbed to). Every November, each family branch -- the descendants of the nine brothers and sisters -- assembled around folding tables festooned with cheap plastic tablecloths, sat loudly in creaky metal collapsing chairs, and ate till overfull, drank till overserved, and laughed until overheated. Directly behind ours was a table whose numbers seemed to dwindle every year; the cancers that took them, often very young, were caused by the BRCA gene we wouldn't discover we carried for another decade. We still gather in that church basement, but over the years, as kids grew older and the elders passed on, the hall -- which once pulsed with such life and energy -- is nearly empty; more people are missing than are present. And BRCA, and its attendant cancers, claimed many of the departed.
All of this is to say that, for me, BRCA and what it can engender is actually rather abstract. Aside from the people at the next table over who didn't come back one year, I never saw anyone close to me die from cancer. My parents are healthy. My first cousins are too. My grandparents had cancer but they survived. So why am I so afraid I'll get sick? So afraid I'm willing to cut of my breasts before they kill me? Because I don't know what cancer looks like. I don't know how cancer feels. I don't know how cancer spares or how cancer kills. In its abstraction, cancer wields more power over me than if it had visited me where I lived. I have to make decisions based on emotions and intuition, not history and observation. And I fear it so much, I'm willing to do just about anything to prevent it from getting me, even if that means choosing a mastectomy.
To all the mothers -- past, present, and future -- out there, happy Mother's Day. Especially you, Mom. Love ya.