SPECIAL OFFER: - Limited Time Only!
(The ad below will not display on your printed page)
Before I learned about my genetic mutation, my life in Austin, Texas, was thoroughly unremarkable. I was happily married with a chatty 2-1/2-year-old son named Eli, and my world was so lacking in drama that my husband, Max, had to fabricate some of the news in our holiday letter to make it interesting. "Miriam adopted two new hobbies: macramé and bungee jumping," he wrote. "The highlight came when she jumped off Mount Bonnell in Austin using a 230-foot cord knotted out of dog and cat fur she harvested from underneath our bed."
I first met this funny man when I was 38. He had just moved to the Austin area to teach biology. It turned out we'd both grown up in New York City and had gone to the same summer camp in the mid-'70s. Set in New York State's gorgeous and green Hudson Valley, Camp Thoreau was a pastoral escape from my tough city school, where kids had fistfights and tried to burn each other with cigarettes. At camp we had a culture of affection. We leaned on each other and held hands as we sang folk songs. We'd gaze at the stars and dream of world peace.
When I met the adult Max, he was clearly a kindred spirit. He said that at our age, sometimes you just know what's right. So after a few months we moved in together, planned our wedding, sold the house I owned, and bought a bigger house together. Six days before our first wedding anniversary, our son, Eli, was born. He apparently inherited our love of camp folk songs, commanding us two years later, in his authoritative toddler voice, to play "If I Had a Hammer" for the 832nd time.
After we sent out the made-up letter about bungee jumping, I got a call from my mother. She's the one who inspired my love of meaningful talks, reading, and laughing till you pee in your boots. "I have an ovarian mass," she said. Surgery revealed that she had Stage IIIC ovarian cancer, one tiny increment before the death-sentence stage. The possibility of losing her took residence in my mind and in my stomach. Sick with worry, I spent weeks at the edge of throwing up, just like I did when I was pregnant.
I also started thinking about my own cancer risk. My mom was 2 when her mother died of breast cancer. My mother's only sister died of breast cancer a couple of years before my mom's diagnosis, and her daughter -- my cousin -- was diagnosed with it as my aunt was dying. After my mother's diagnosis, my cousin checked on her own ovaries, which turned out to be cancerous, too. Other women on my mother's side also battled these cancers -- some successfully, some not.
Because of our family history, some of my relatives had gotten a genetic blood test, so I decided to get tested, too. I met with a genetic counselor, and when the results came in, I found out I had a BRCA1 mutation. That meant I would have up to an 85 percent chance of getting breast cancer and a 44 percent chance of getting ovarian cancer before I was 70.
As I said to Max while we were lying in bed together, my tears and runny nose soaking his chest, "This sucks the big one." How had we arrived at the "in sickness" part of our marriage vows so quickly? We talked about whether I should have my ovaries, cervix, uterus, fallopian tubes, and breasts removed. Surgery would come close to reducing the risks completely. My insurance would cover everything, including breast reconstruction. The insurers knew what I came to believe: You can pay now to prevent the likelihood of paying a much higher price later.
I looked at what my mom and cousin had been going through, how they'd lost their mothers, how they might leave behind their own families. If I did nothing and got cancer, I'd regret it. My choices were lousy or lousier. I decided to go for the one that seemed least lousy to me and have the surgery.
Max and I discussed the possible cons -- the risks, faux breasts, premature menopause -- but we lingered over the pros. I was 42 years old and we had no plans for more biological children. I could pick the size of my reconstructed boobs. Max, a real trouper, pointed out that if I had to lose a finger to beat the odds, I wouldn't hesitate, and I needed my fingers more than my breasts.
One morning I felt so angry that I banged my fist against a wall. Still, when I unclenched my fist and blew on my red knuckles, I felt almost ready to face my choice. I was fortunate to have gotten the heads-up -- that's why I took the test. I was also glad I didn't know about it earlier, when I might have chosen to give up my ovaries and my chance to have a baby.
On a sunny day in June, at the same hospital where I'd given birth to Eli three years earlier, I sat shivering in the pre-op room before my surgery. Eli was at preschool nearby, probably snacking on grapes and making art out of paper plates. I just wanted to wake up alive. Max, trying to be funny as usual, reassured me that I had a greater chance of being murdered in Austin than of dying under the anesthesia.
But when I woke up in the recovery room, I thought dying might be easier. My torso felt like it was smashed under the wheels of a semi and I couldn't possibly get out from under it. My breathing monitor kept sounding an alarm because I couldn't breathe deeply enough. I felt like I was there for hours; what, no staff was available to take me up to my room? I had never felt so alone, helpless and in pain.
The below-the-waist recovery was a breeze, but the rest was hell. The implants were placed under my chest muscle, which had to be stretched for them to fit. It felt as if somebody was twisting a knife in there, and it hurt to breathe. Eli was sad that my "booboos" made me incapable of snuggling with him. Max and I slept in separate bedrooms so I could thrash around. One night I seriously thought about trying to rip out one of my implants. Should I use a knife? Scissors?
It turned out that some of the pain was from an infection in the left implant, and I had to have it surgically removed. The wrinkly, empty skin that remained on my left side was hard to look at -- for me and for Max. For a while, when I finally healed enough to make love with my husband, I kept my shirt on.
I was thrilled that my mother and my cousin were both in remission. But soon the weight of the family curse crashed down again. My cousin's cancer returned and she died a few months later, leaving behind two teenagers and a husband. My left breast healed, though it still has a lengthy scar like a war wound; the scars on the other breast have faded.
One day I heard Eli singing "I'd hammer in the mor-or-ning..." and realized how grateful I was for the present and all I'd learned about life since those idyllic summer days at Camp Thoreau. I felt such a sense of growth. And such a sense of loss. Our holiday letter that winter, we decided there was no need for humorous embellishment -- we just told the truth.
These are genes known as tumor suppressors. When a woman inherits a harmful mutation of one of these genes, it means she's much more likely to develop breast or ovarian cancer, says Susan M. Love, MD, author of Dr. Susan Love's Breast Book.How much does it increase my risk?
Statistics vary according to the mutation, but about 60 percent of carriers will develop breast cancer, according to the National Cancer Institute. That means they're about five times more likely to get it. About 15 to 40 percent with a mutation will be diagnosed with ovarian cancer.Should I get tested?
If you have a strong family history on either your mother or father's side, you should talk with a genetic counselor. While it's a simple blood test, it can be expensive. Results may take several weeks, and you should check first to see if your insurance will cover it.What are my choices if I do have a mutation?
Originally published in Ladies' Home Journal, August 2012.