After perusing a fellow BRCA-er’s blog (A Walk in My Shoes: previvorship &laughing in the meantime) I was inspired to write something a bit more personal than what I’ve been doing lately. I started this blog with a short rundown of my situation, but I want to paint you a better picture of how BRCA came into my life.
My beautiful mother died of breast cancer when I was just three years old. It’s not a common thing to meet people whose parents died at such a young age, but for me it’s just always been reality. People ask what it was like growing up without a mother, but it just felt normal to me because I had nothing to compare it to. Of course at that young age I didn’t really think about breast cancer. My mother’s mother also died of ovarian cancer before I was born, but again it wasn’t something I thought about.
Flash forward to the summer after I graduate from college. Bright-eyed, eager to start my life, I am living at home, job-searching, and deciding what my next steps will be. Out of the blue, my dad (who is a gynecologist) says, “I want you to get tested for the BRCA gene.”
Umm… sure. He had mentioned this gene before but I kind of wrote it off. ‘Oh, of course I have a high risk of breast cancer – my mom had it!’ I always thought.
But my dad is a wonderful man and I know he only has my best interests in mind, so I go along with it. As I said before, I always knew the risk was high, so why not make it scientific?
Well we went to the hospital where my dad worked, the same one where my mother received her breast cancer treatment, and met with a geneticist who was also a friend of the family. Risk percentages, test costs, insurance issues, all were hashed out in front of me. And my blood was drawn and sent to the Myriad labs.
Easy enough. I almost forgot about the test until a few weeks later, the geneticist called. I knew it was positive almost immediately because she wanted us to come into the office to talk. I don’t think a negative result would have warranted an office visit.
My dad and stepmom and I went to the office and were given the results. Hello, ton of bricks. At that point it was real. It was on paper. I had this sucky little gene mutation that may send me the same way as my mother before me and her mother before that. How’s that for an early look at your mortality? I thought a lot about death at that moment. Needless to say it was scary.
But the image from that day that is most ingrained in my mind is my father’s reaction. The man who had to watch his wife suffer from breast cancer while his three year old daughter sat idly by not knowing the gravity of the situation; the man who somehow had to tell his daughter that mommy was gone; the man that raised me and my two brothers on his own after my mother died from a vicious and terrible disease… well… now he had to think about the possibility of going through similar events with his 22-year-old daughter. I cannot imagine what he felt and I’m not sure I want to.
There were two geneticists in the room and one took me to a separate room to discuss the news without my parents present. I cried. I can’t even remember now what I was feeling exactly but I remember telling her that I wasn’t so much sad for myself, I was more sad for my father. Well, that was probably only half true. Of course I was sad for him but I also felt something unexplainable – some feeling of doom that I’m not sure you can really feel unless you’ve been in the same situation.
I was 22, a recent graduate. Breast cancer was the furthest thing from my mind. Death was but a twinkling star in a galaxy far, far away. But not anymore. Now we were face to face like opponents in an arm-wrestling match, waiting to see who was stronger, who would crack first.
Even today I feel almost as though I’m in this battle with BRCA. I’ve had a couple years to let the news sink in, to learn all I can and network with people who know what I’m going through. I’m 25 now. I’m fairly confident that I’m not living my life any differently than I would if I wasn’t BRCA positive… besides the mammograms and MRIs and need to have good doctors and top-notch health insurance and looking at pictures of breast reconstruction online and thinking about what my own scars are going to look like and if I’m going to keep my nipples and if my boyfriend will still love me and what if I get cancer before I get surgery and oh my god what if I need chemo and…
Well that’s how I met BRCA and a little bit about how we’re getting along now. I hope to share more vignettes like this in the future about what decisions I’ve made and how I feel at certain points through this journey.