My Ovaries or My Life
I skated through my 20s without thinking about cancer. At all. Then something happened when I hit my 30s. Cancer came a knockin—with a vengeance. My moms sister was first: She was diagnosed with stage I breast cancer in 1996. My mom had her brush with baldness six years later when she was diagnosed with stage II breast cancer. Then, there was a wonderful two-year break before cancer came crashing down on us again. In one year, that same aunt battled bilateral ovarian cancer, my father was diagnosed with brain cancer, and I, pregnant with my son, watched helplessly, wondering if I would be next.
Fortunately, I wasnt. And my plan is to keep it that way. But to meet that goal Ive decided to make a big personal sacrifice—two, actually. Ill soon have radical surgery to remove my ovaries and drastically lower my risk of cancer. Its no easy decision, believe me. Im 39, and no 39-year-old I know would happily choose a lifetime of hot flashes and vaginal dryness from early menopause. But I might not live with my ovaries, so I think Ive reached a place where I can live without them. Heres how I got there.
February 2005—Are these my genes?
When my mom and my aunt developed cancer, no one looked into where these female cancers were coming from. All we had was family lore that when the doctors opened and shut my great-grandmother, the cancer had spread far from her ovaries to the surrounding tissue. So when my social worker cousin (my aunts daughter) insisted that we all consider genetic testing, it was almost too much truth to confront. But I sat through the hour-long family-tree chart with a genetic counselor, had blood drawn, and then heard what no one wants to hear: My mom, my aunt, and I were all Breast Cancer 1 (BRCA-1) and BRCA-2 positive. We had the genes that raise your risk of ovarian cancer from 2 percent to as high as 45 percent and risk of breast cancer from 13 percent to as high as 80 percent. (In a weird twist of fate, the cousin who pushed us to get tested turned out to be negative. Her sister and my brother have yet to be tested; please keep your fingers crossed.)
I found it ironic that my ovaries had the potential to kill me. While Id known for a few years that my ovaries were hardly superstars—I have polycystic ovary syndrome (PCOS), an endocrine disorder that can lead to very heavy periods, difficulty losing weight, persistent acne, infertility, ovarian cysts, and increased facial hair—they worked when I needed them to. With a little help from my in vitro fertilization (IVF) team, these organs were directly responsible for giving me my son, my greatest production to date.
Now I felt as if Id been hit by a stun gun. I started doing some deep thinking about my legacy and wondering what went wrong. Youre supposed to get great things from your ancestors: perfect pitch, dimples, the ability to tell a great joke and make piecrust from scratch. Youre not supposed to get a high-risk gene. Maybe my 92-year-old grandmother was too overwhelmed to express how she really felt, but she did say—upon hearing the news—that shed never have married my grandfather if she knew his side of the family harbored this insidious genetic strain. Thats how crazy life can get when you feel bad about your genes.
Next Page: July 2005—Why me? [ pagebreak ]July 2005— Why me?
I now know firsthand that the famous stages of grief kick in when you learn a fact about yourself that youd rather not know. First, there was denial—the “Im not going to look into it, know about it, research it, this is not me” back talk routine. Next up? Anger. The journalist in me screamed inside wondering why we never ordered my great-grandmothers death certificate until after my mom and my aunt went through 25 wrenching rounds of chemo between the two of them—especially since it took one quick letter to a health-department-records office to confirm that she, indeed, died of ovarian cancer.
Then you start bargaining. Theres something humorously absurd about thinking things like, “If I stop eating peanut M&Ms nightly while watching my 99th repeat of Sex and the City, will this whole thing go away?”
Soon depression sunk in. That happens when you go for regular appointments at a cancer center and are routinely told by your esteemed doctor that you need to have a vital reproductive part removed if you want to see your son grow up. Six months into this surveillance, my doctor told me that he was busy treating two women my age who were dying of ovarian cancer. Both, like me, have the gene. Both came in for an initial ultrasound that showed nothing but healthy tissue. Six months later, both womens ovaries were riddled with cancer.
Acceptance was sort of last, but not least. Like a lot of unpleasant things in life, it is ultimately better to see something as a gift, not a curse. One of the most important things my dad, a retired physician, told me after hed had brain-cancer surgery was to see this glimpse into two devastating cancers as a gift—a look at two things I might avoid. So, for the last two years, I learned to live life as a woman with a target on my back. My calendar now fills up twice a year with visits to my breast surgeon and gynecologic oncologist. I have one mammogram and one magnetic resonace imaging (MRI) scan a year, along with twice-yearly ovarian ultrasounds. Im being watched, and its become such a part of my life that I dont exactly remember whats its like not to be watched.
May 2006—How will I feel?
Theres an ongoing discussion in my head: “Will I feel like a woman if I dont have my ovaries?” Everyone talks about how much less of a woman you feel without breasts (these are danger zones for me, too, by the way, though Im told I dont have to lose them right away). But losing your ovaries is just as tough—if not more so—due to the consequences: vaginal dryness, changes in sex drive, and the extended sentence of being reliant on synthetic hormones to keep you from shriveling, not to mention the possible increase in breast-cancer risk youre assuming.
I had already had a brush with menopause when I prepared for IVF, and it wasnt pretty. They shut you down for a while before turning you back on. For 60 days I felt like I was living in a sauna. No room was cool enough. And all I could think about was whether I was destined for a lifetime of middle-age sex with my husband.
I also wonder if my husband will want to sleep in separate beds when he sees what a hormonal mess I become. He tells me hes worried about sex and dry spells, and who can blame him? Add the fact that hes just found us a new babysitter in the form of Renda, a 6-foot-tall Wilhelmina model who lives in our building, and Im feeling a little insecure. I love my husband dearly and know hes loyal to a fault, but I cant deny that I dont feel at my best. I havent gotten rid of my postpartum saggy belly. And now Im going to be rendered infertile and, worse, potentially hot-flashy and dry?
I have supportive friends, but some have suggested that surgery is a radical step. Radical, indeed. I, the consummate researcher, still cant find any statistics pointing to how many women my age get prophylactic oophorectomies every year. Why the big secret? Is it that prophylactic mastectomy stories are—pardon this—sexier?
Next Page: May 2007—What am I waiting for? [ pagebreak ]May 2007—What am I waiting for?
Back when I first went for genetic screening, I was numb. I had given birth in September and, here it was, nine months later, and I was sitting in this genetic counselors office. I didnt really hear her ask me how many kids I wanted as she implied that I should get into high gear if I wanted more. The doctors echoed that notion. When I first joined the Screening and Prevention Program at New York University Medical Centers Cancer Institute, they were fairly even-handed, talking about risk-reduction, yadda yadda. But lately, a series of “what are you waiting for? dont you want to live past 40?” discussions have left me feeling worn out and sad.
Every time I leave the cancer center, I have this intense urge to sprint away as fast as I can. Instead, I head to the nearest cafe and order the tallest cappuccino theyll sell me. I suppress the urge to sob all over the foam. Thats how it hits you when youve just been told again that theres a good likelihood you wont live to see your son play soccer if you dont get your ovaries removed—stat.
A few weeks ago, I went for yet another routine exam. I was exhausted. Im in the throes of being a mom to a very vibrant almost-three-year-old. I teach journalism. I write for magazines. And my husband and I are busy co-owners of an events company for families. Whats more, my father had just died, and I was grieving. My husband and I stepped into the elevator. He exited at the right floor. I forgot to follow him and ended up exiting one flight up. All I saw were bald people wearing hats.
After I found my way back, I was called in for the usual grueling internal ultrasound conducted by a sonographer who must have played a lot of video games when she was a kid. She moved that dildolike wand around like it was a joystick (all her joy, not mine). Her rapid sweep from left to right ovary left me feeling sorer than a porn star must feel after a long day of filming.
Soon, I limped across the hall to wait with my husband for the doctor. He was kind and warm. He knew this wasnt easy. I was ready to book my surgery.
That leaves the actual deed. Im doing it in 48 hours. The procedure is a piece of cake, my doctor has told me. Ill be back to work in a few days. Still, how exactly do you herald the end of your fertility? Do you wear red for a week to signify the end of menstruation? Sit on a rock and contemplate babies youll never have? Im not doing either.
I think accepting my legacy (and doing something about it) is the best gift Ill ever give my family—and me.