You know that song from Rent “five hundred sixty five thousand six hundred minutes” the one that talks about the ways to measure a year? That’s what I keep thinking of as I approach the 1 year mark from my preventative double mastectomy. Except my version of the song includes five surgeries, two fat grafting, six doctors, forty eggs, two hundred doctor visits. Because for me, the year was marked more by medical events than cups of coffee (although there were a lot of those too). But really, since September 25th of last year I’ve had a double mastectomy, reconstruction and fat grafting, revision and fat grafting, 2 weeks worth of fertility shots, and two egg retrieval procedures, and countless ultrasounds, blood draws and doctor visits. It has been the year of boobs, ovaries, boobs, ovaries and looking back it’s kind of hard to wrap my head around. And that’s not even taking into account my mom’s 1st go at ovarian cancer brief 6 months of remission and now her re-diagnosis with OC and return to chemo.
You see, when I entered the hospital September 25, 2014, to voluntarily remove my healthy breast in an effort to dodge the looming threat of breast cancer running through my DNA, I knew I was signing up to lose an important physical and emotional part of my identity. What I didn’t know was how much more I would lose during the course of the year or how much I would gain.
Let’s talk losses first. I knew the surgery would be painful. It was. But pain is temporary. At this point last year, what I don’t think I really knew was how hard it would be to actually lose my breast. To wake up one day and no longer feel parts of them and to have them no longer look like “mine.” Conceptually I knew I would face that loss, but I don’t think there was ever a way to truly feel the loss until it happened. 363 days after my mastectomy and I still miss my original breasts. Now, don’t get me wrong, I’d STILL HAVE THE SURGERY and I have NO REGRETS.
Would, Should, and Did! But I still miss my breast. I loved the originals. I loved the way they looked, I loved the way they felt, and I loved the way they made me feel about my body. Waking us these days with (I’ll admit) some damn good looking reconstructed breasts isn’t the same as before. Yeah, they look great, but to my eyes the look different they look like someone else’s boobs. And then there is the whole part about feeling. I have some sensation, but not much. Last week, a few hours after I had finished some reading I looked down and saw I had a highlighter in between my boobs. I’m not sure what’s more odd, the fact that I didn’t realize I had a highlighter between my boobs or that somehow I subconsciously must have put a highlighter in my shirt…. But funny stories aside, it’s emotionally still a hard thing to mourn the loss of sensation. Especially in a part of your body that you want to feel.
Aside from my physical breast I also lost a year of grad school. I was all set to return to school to pursue a PhD and the knowledge of BRCA1 put the breaks on that. I knew I couldn’t enter a 5-year intensive program and have to worry about a ridiculously high risk of breast cancer so the PhD went on hold and I had the mastectomy and then a looooong and complicated recovery followed by two more breast surgeries. All in all, it set me back a year and that sucked. Better than cancer, but still sucked.
Then there is the topic of relationships. I’ve lost a few really special friendships this year. My health and surgeries paired with my mom’s cancer treatments meant I had to really rely on my friends and coworkers to help me and be my family. Most of them did just that and so, so much! Some people I’d previously had more of an acquaintance-type friendships with pre-surgery were extraordinary comforts and support and are now among those I consider close friends. But the ones that I lost felt especially painful. They were people I thought I would always have in my life and whom I thought I had been there for in their tough times. But it was some of these people who would say and behave in the most insensitive ways and I think that’s hard for anyone to understand, much less someone who goes through something so life-altering as BRCA, a mastectomy, and a parent with cancer.
This leads to my gains. I have gained the MOST amazing set of friends. Strong, fierce, generous, loving, and hilarious women who have stood beside me while I faced my BRCA surgeries and who have allowed me to stand beside them as they have faced theirs. This mutation wrecks havoc on your breast and your ovaries, but it also runs through the veins of some of the most incredible women I know. Without them I ‘m not sure how much I could have taken this year. I love these women with my whole heart and feel so lucky to have found them.
I think the most important thing that I gained this year though is a sense of empowerment and pure relief. I never doubted that I was a strong person, but I never would have guessed that I would choose to save my own life by removing my breast. The power that comes with taking away cancer’s ability to attack my breast and preparing to remove that risk from my ovaries too gives me a sense of empowerment that I never knew I could have. On top of that, my frozen eggs now give me the chance to screen BRCA out of my children’s genes. And nothing makes me feel like I have control over BRCA more than knowing it stops with my generation does! My mom didn’t have a heads-up on the BRCA1 thing and ovarian cancer will probably steal her life one day, I will elect to remove my breast and ovaries in my 30’s to prevent cancer, but my children will never, ever have to make the choice to remove health body parts or wait for cancer. And knowing that I control breast cancer’s impact on me and my future children is worth all the “real” boobs in the world.
Happy I Saved My Own Life Anniversary to Me!