Today, I had every intention of writing about my education plan and discussing my positive future outlook, but I'm really not feeling it. I didn't intend to share any information about this publicly, but I feel like I need to, so here it goes: I am meeting a genetics counselor for BRCA gene testing a week from tomorrow, and I am entirely freaked out.
My Dad's side of the family has a very strong history of breast cancer, including a rare instance of a male relative being diagnosed with breast cancer. The cancer that runs in our family is very aggressive and fast-moving.My paternal grandmother, her sister, and their mother all had breast cancer; my grandmother and her sister are each 3x survivors. My paternal great-grandfather was diagnosed with metastatic male breast cancer before he passed away in 2010. On top of this, all of the women who were diagnosed with breast cancer received their first diagnosis before the age of 40. I'm most familiar with my grandmother's case. As I mentioned, she's a three-time survivor. Her three cases have somehow resolved around my birthdays - she's called me her miracle and visited me after the all-clear every time. A strange, bittersweet correlation to have, but one I have nonetheless. I have watched her fight cancer and then deal with the aftermath of reconstruction surgeries and wide-scan radiation. The latest in the saga has been discovering that our family also has hereditary hemachromotosis. I will eventually have the energy to worry about that, but for now, most of my worries are about cancer.
When I turned 18, my grandma sat down with me and asked me to please look into getting genetic testing done. She wanted me to ask for early detection measures and to have plenty of time to research early prevention. At the time, I was a very heavy smoker and didn't want to think about my own mortality. I ignored her advice for a few years and did the normal dumb things you're supposed to do when you're entering your twenties. Shortly before I turned 21, I was thoroughly inebriated and suddenly my brain sent me a notification: Google breast cancer risk management. Drunk-me listened.
Despite smoking being the poster cause for lung cancer, it actively increases your risk for ALL cancers. Heavy smoking is linked to increased risk for breast cancer in premenopausal women and, if you continue to smoke during and after your cancer treatment, you run into increased risks related to lung function and blood clots. Drunk 21-year-old me panicked, because Dr. Google tends to cause panics. But it definitely also caused me to rethink some of my choices, and I stopped smoking three months later. I'm about a month away from my 6 year mark, and I'm proud of that. It's still hard, and there are things I miss about smoking. But the reason I quit is still much bigger than the reasons I wanted to keep doing it.
The next step was to find a genetics counselor. I struggle to connect with doctors and I'm terrible at keeping PCPs consistently. This made it difficult for me to open up and ask for the referral I needed. Toward the end of last year, I finally found a nurse practitioner that I really like. She happened to have just returned from a seminar on the importance of genetics counseling, so it was a great match - our interests dovetailed. She referred me to a genetics counselor at Oregon Health and Science University's Knight Cancer Institute, and they accepted me as a patient after reviewing my family history. My first appointment was originally scheduled for the end of January, a month before my 27th birthday. I'm ashamed to admit that I panicked and canceled the appointment two days before I was supposed to go. I realized I hadn't done any of the emotional legwork and absolutely none of the insurance preparation I needed to before going to the appointment. Also, thanks to my grandma's oncology history lining up with my birthday, I was like... extra fraidy cat. In every single sense of the word, I wasn't ready. I rescheduled for the end of April instead and now, here we are. The insurance preparation has been done. My birthday has passed. Now all that's left is the emotional legwork...
And I am entirely freaked out.
The purpose of being tested is to find out if I carry the BRCA gene mutation that runs in my family. I am something like 87% likely to carry it. The purpose of finding out if I carry the mutation or not is to determine my cancer risk and how to reduce it. I am something like 83% likely to develop cancer before the age of 40 if I am a carrier.
Those are really high numbers. They're scary numbers. I don't like to think about them and I definitely don't like reading them, now that I've typed them. But what I'm trying to remind myself is: These numbers are not a guarantee. And if I do carry the gene mutation? There are options.
I don't really like the options either. I'd rather just not have the gene mutation and be done with it. :) But I don't get to decide that. In an effort to desensitize myself to the fear I've been feeling, I have been a little cavalier in sharing tiny bits of this info to certain friends. It's not the best way to handle things, but I'm trying to be forgiving of myself here. At least I did something, lol. Now comes the crying and the considering of scenarios and the conversations about my plans for the what-ifs. Which is why, despite my intentions for today's blog to be about my education, I am instead talking about my cancer risk. I have largely been keeping this information to myself, but I realized that sort of secrecy has been affecting my education and my art-making - the two things y'all see the most of in my Instagram posts. So, now y'all know. And hopefully next week, I can talk about my education plan and positive future outlook instead. xo, Cate