My decision to have a prophylactic bilateral mastectomy was a tough love moment for me. With an inherited BRCA II mutation, I had an 85% chance of having breast cancer in my lifetime. I am not saying this is the “smart way” or “right way” to handle this situation. But for me, this was the only way to preserve my mental and physical wellbeing. I could not go through the remainder of my days frantic, upset and absorbed in the possibility that cancer was lurking inside me. I could not tolerate that mental assault and the risk that my worry and fear would remove me from the very things I loved most about my life: being a mother, a wife, a sister and friend.
Tough love is just that. Doing the smart thing, the right thing, even if it breaks my own heart, even if it makes my own life terribly uncomfortable and inconvenient, is brutal. But for me, it’s not about courage. It’s about self-preservation.
I remember when my twins were first born I used to wake them at midnight to nurse them before I went to bed so I would feel confident they’d gotten enough nourishment to hold them till morning. They were my favorite part of me. In many ways, they defined me.
But at 2am when they began to wail, I just laid there listening, aching over my decision not to get up and soothe them back to sleep, not to take them into bed with me. I knew that no matter how much they meant to me, I could not be a good mother--my most favorite part of me--if I didn’t get a night’s sleep. Perhaps it was purely and plainly selfish on my part. But without some rest, I knew I would spend the day feeling frantic, upset and focused on my own discomfort and incompetence as a mother, rather than relishing the amazing gift of being with my children. So I lay there and cried, too, and finally they got quiet. The next night, they whimpered a little but I waited it out again. I worried whether or not I was making a mistake. But on the third night, we all slept peacefully. I awoke with a clear head, ready to be fully engaged with my babies.
A bilateral mastectomy is considered the standard of care for those who test positive for a BRCA I or II mutation. Though medically advised, it was not an easy decision for me and it was not fully supported by everyone in my life. I had not, after all, been diagnosed with breast cancer. My actions were purely proactive and precautionary. There were valid concerns about the risks I was taking to undergo major surgery as well as the toll it would take on my physical appearance. An alternative would have been to screen for breast cancer at six-month intervals. This is not a preventative measure but it could provide an opportunity to catch the cancer at an early and presumably treatable stage. For me, though, cancer at any stage does not present itself like an option.
Like all tough love decisions, I know that this may not work out perfectly. I labored over my decision for two years, but have not wavered from my choice since I made it. In the end, I am the only one who lives in my skin and the only one that can make the “right” decision for me.
Of course, being certain that this was the best choice for me does not mean I haven’t been apprehensive about the procedure and the aftermath. A bilateral mastectomy with reconstruction is a big deal, involving two surgeries and months of back and forth to the doctor in between. It has been three days since my surgery and I am uncomfortable. As someone who earns a living as a fitness trainer, the months of doctors’ appointments ahead and the interruption to my active life are terribly inconvenient. And, I am vain. I am a 53-year old woman clinging to a fantasy of preserving youth by my carpal tunneled little fingers, trying to maintain my health, in large measure, just to look good.
I am embarrassed to say so but here it is: I still want to look pretty.
This morning when I finally had the courage to take my first real look at myself in the mirror, I erupted in tears and had to look away. I am misshapen and scarred. There is nothing feminine looking about me.
I look like a survivor.
And I guess maybe in a way, I am. I am committed to living the healthiest, fullest life I can create. Choosing this surgery was what I was willing to do to beat some very bleak odds. I remind myself that I do not have breast cancer and that my chances of getting it have been greatly reduced, from 85% to 2%, which is significantly less than the normal population without the BRCA mutation.
I am not brave, but I am strong, and this I also inherited from my mother who faced far more difficult obstacles with grace, dignity and determination. I am Ellie’s girl, from my head to my toes, from my skin to within. And in her absence, I will honor the strength she gave me.
I forced myself to look again at the person in the mirror. Despite the slashes across my chest, the drains hanging from my body and the misshapen form I see before me, I am still Ellie’s girl and I am not going to let my vanity take me out. My mother lost her hair and her muscle; she had a multitude of scars, blisters and pain, and a knob-sized port protruding through her chest. She was often fearful and fatigued. And still, she always looked like her vibrant, beautiful self. No doctor or disease could remove her quintessential strength and vitality. She was a survivor who did everything she could to stay fully engaged with us until the day she died.
The noise in my head has quieted. I am no longer worried about lurking terrorist cells or whether or not I have done the right thing. In time, the reconstruction will help me look like my old self again. Today I will rely on my inherited strength and resolve and try to stay present to the amazing gift of being alive and healthy, with family and friends that remind me of exactly why I didn’t want to risk losing a single minute.
The girls are gone.
I am not.