On November 5, 2007 I had both of my breasts surgically removed. I didn’t have breast cancer. I had a double mastectomy as a preventative measure because I have the BRCA1 gene known as “the breast cancer gene”. So did my older sister Sue. Sue died on December 6, 2007 after battling and losing against an aggressive form of breast cancer that is typical in sufferers with the BRCA1 gene.
In one month I lost a lot. An awful lot. Sue was not only my sister she was also my best friend and her dying suddenly was not factored in when I decided 4 months earlier to go with the most aggressive means of cancer prevention available to me. I had seen what cancer had done to my lovely sister. She lost her hair, her appetite, her vitality, her restful sleep. Her toenails cracked and her skin chapped from radiation. She suffered crippling nausea and waves of depression. She lost the energy she had relied on to be a parent to two young daughters.
When Sue asked me – told me really – to get a gene scan I couldn’t refuse her. I assumed it would be positive. BRCA1 runs like an ink stain on white paper in rainy weather throughout my family – spreading…distorting. My paternal grandmother, grandfather and aunt had all died young from cancer. (Science Fact! BRCA1 is not just for girls! Men have much higher prostate cancer rates – that’s what took my grandfather when I was still in kindergarten – and both men and women have a higher risk of colon cancer as well.) So when my local doctor left numerous messages for me saying things like, “Ah we ah need to see you soon – right away – to talk about your ah…results” I knew what they would have to say.
What happened next is a story that many women can tell. Lots of chats with doctors. A fascinating meeting with a couple of gene specialists where they layed out the science for me. Teary phone calls with my sister who was recovering from her second bout of breast cancer and was supporting me while I stared down surgery. Lots of internet searching about breast reconstruction. Lots of worry. But no doubt. Not for me.
Not having the surgery was not an option for me. I had sat next to my sister in the chemo ward while she was enveloped in a big leather lounger. Personal TV screen, tons of trashy magazines, a big glass of apple juice by her side and 48OZ of an evil viscous liquid nicknamed “The Red Devil” (due to its fire engine red color) being pumped into her veins. A chemo drug – one of many – that made her so violently ill she could barely raise her head off the pillow that night. The next day I stood in the shower with her helping her shave her head while we both cried and then we lay on her bed and watched TV together holding hands until she fell asleep. Over the chatter of “90210” reruns I could hear her husband weeping quietly in the next room.
When I told people that I was having a double mastectomy without having had cancer it seemed like a big deal. It felt like a big deal. I researched and discussed and ruminated constantly about it for months. My sister and I planned our future topless beach vacations to showcase our new “sport” boobs and looked forward to putting all this shit behind us and getting on with the real business of our lives – raising our kids and complaining good-naturedly about our husbands.The threat of cancer took my breasts but cancer itself took my sister – breasts and all.
So what do I miss? Well, I do miss my nipples. Mine were not anything to write home about but I liked them. I nursed my kids with them and I do miss them sometimes. I miss the warm feeling of my breasts – the surface of my implants is always cool to the touch because the lack of blood vessels and I don’t sweat there either. I can get phantom sensations – the missing limb thing – in dreams and very rarely if I hear a newborn cry. I can feel my milk letting down – that is weird.
But mainly I miss my sister. Every minute of every hour of every day. Do I miss her more than our mother does? Our father, our brother? Her own two daughters now alive for more years without her than they were with her? Her widower husband who has not remarried? Her myriad friends and acquaintances? She was a well liked gal and with good reason. So no – not more than just…always.
People who know me know that my sister dying is what broke me loose from my moorings for a while and set me adrift. People who don’t know me think it was the trauma of my surgery. Losing my breasts was a traumatic situation. It was painful and upsetting and recovery was slow. But it was my choice. I chose to do it. And I’m alive. My children still have a mother. I don’t know what will kill me but it won’t be breast cancer*. My sister didn’t get to make this choice. Her cancer was advanced before she even learned of her BRCA1 status and her greatly increased odds of the cancer metastasizing. The opportunity for aggressive prevention long gone. But for me the world continued. I continued. And eventually life got good again.
*(even with a double mastectomy I still have a 2% chance – average population has an estimated 8% chance)
I remember my sister by paying attention to my life. By appreciating my life. I don’t succeed all the time but when I get maudlin I think of Sue and remember she just wanted to stay alive. Not be a millionaire, or famous, or prettiest. Just alive. Watch her daughters grow up. Be with her husband and family and friends. Watch crappy TV and take naps with me. So I know you are out there my breasts – somewhere – and I just want to say we had a great run together and I miss you but life is good for me – even without you. Losing my breasts was easy compared to losing my sister.
October is Breast Cancer Awareness Month. You may have noticed a pink ribbon or two on some items in the stores (I especially like the Pink Ribbon “Floor Swiffer”). But it’s not about pink ribbons it’s about our families, our bodies, our lives. My path was extreme but each path is different. Take your body seriously and keep it well. Hold your dear ones close and love them well.