When my mother was dying of ovarian cancer, I was twenty-five. Back then, now more than a decade ago, I took advantage of the kind of freedom I would never know again; not yet married, without children, I was able to put my life on hold and focus completely on the end of hers. I took time off from work, left my boyfriend alone in our apartment, and moved back home. Under the same roof once again, I became my mother’s nurse, orderly, and cook. I bathed her. I changed her IV. I rubbed her hands and feet with lavender oil. Our time together was made even more precious because we new it would soon end. We talked. She shared intimate stories about her life that I had never known. And, for the first time, my mother and I became friends. Which is why, when she did pass away, I felt utterly unmoored. But it wasn’t until years later that I would actually experience her death as a complete ambush.
At first, the attack was slow and far-off. My gynecologist sounded the initial warning: Because my mother had died from ovarian cancer, I would be more likely to get it too. The doctor, who had also been my mother’s surgeon, advised me to have my ovaries removed.
“Now?” I asked.
“No. When you are done using them,” he stated plainly. “When you’re done having children.”
Until that time, my doctor and I would launch a war on a cancer I didn’t even have: mammograms, breast MRIs, vaginal ultrasounds, and blood tests. I still don’t have anything wrong with me, but I see my team of cancer specialists and radiologists more often than I go out to dinner with friends. It feels like my ovaries are stalking me. At just two and a half centimeters each, they are tiny ticking time bombs sitting inside of me, threatening to kill me at any moment.
Then, years into this high-risk surveillance, came the full-scale assault.
“I want you to see a genetic counselor,” my doctor urged.
He explained that a simple DNA blood test, developed within the last few years, could determine if I had a specific genetic mutation that would predispose me to get ovarian cancer.
“Isn’t all we’re doing enough? I’m not even sick.” I protested.
“Go get the test. Then we’ll talk.”
The blood test itself wasn’t so bad. Typical, really. But the dramatics surrounding the results put it into another category altogether. I had to come back to meet with a genetic counselor and get the results in person. At first, I didn’t understand why I was being so inconvenienced. Couldn’t they just call me? Then, my imagination, my fear, ran wild. I anticipated the conversation would be similar to how patients are shuffled off when they are told they are HIV-positive behind closed doors. My mind raced. Did I have this mutation, or not? Would I live or die?
I remember the “office-of-truth” being cold and sterile. The counselor sat in sharp contrast to her surroundings; her pale blue sweater set and pearl necklace gave her a sweet air of purpose and authority. And her voice was soft and warm. She seemed to purr. Her prepared preamble was about the science behind the testing and she went on and on about statistics, numbers, and math. The words lacked emotion — gliding off her tongue as if she were telling me about the fine scallops she had for dinner the night before. She meant to be soothing, reassuring, but her matter-of-factness made me even more uneasy and I began to dig my nails into my palms, as if it would make her get to the point faster. I began to sweat and feel sick. Just tell me already. Do I have it?
I had it. My mutation is called BRCA1. There are others. Hearing the news, for me, was like being given a death sentence. She could have told me I had cancer, it would have felt the same. My fate seemed sealed – locked into my DNA – and inescapable. I would die the way my mother did. Young. I started to sob in the chair. The counselor gave me a box of tissues, used many times before, I’m sure, by other women just like me.
Ten years have now gone by since my doctor and I had that first conversation about my ovaries and I am now married and finished having children. My son, Jake, is six and my daughter, Lexi, is four. The operation – which had always seemed faraway — is now here. In just a few months, I will go into surgery a healthy, cancer-free thirty-six year old woman, but instead of giving birth to a child, I will deliver my ovaries and fallopian tubes, and because BRCA1 also carries an increased risk of uterine cancer, I’m going to take my uterus out too. I will also wake-up in menopause.
The excision of my ovaries will thrust me into menopausal mood swings, my libido might be affected, and I will most likely get hot flashes. The only difference is that I’ll be in my thirties and most other menopausal women are in their 50s and 60s.
There are thousands of women like me who are choosing (out of fear? strength?) to cut out the very parts of ourselves that help make us women, that give us our femininity. This decision —- to eliminate a potential assassin —- is intensely emotional and cuts across many layers: the conflicted feelings of the woman who chooses to go through it, the reaction of her husband, and the astounding scientific advancements that make such a potentially life-saving decision possible. BRCA1 also means that I also have an 80% lifetime risk of developing breast cancer. Could a pre-cancer mastectomy be next?
There is so much I inherited from my mother. Her strength. Her love of folk art. And, unfortunately, the risk for ovarian cancer. But here is something I just realized as I am writing this today: if my mother had not died young, I am certain I never would have been tested for that genetic mutation in the first place. Somehow, had she lived longer, perhaps her death would have seemed more normal, less scary. But, the truth is, I still would have had BRCA1. It still would have been lurking silently — undetected – waiting to hijack my body. But my mother did die young. And because of that, she may have given life to me twice.