Life with BRCA
Oh hello, everyone! I feel like I've been MIA after my "big announcement" -- at least on this blog! But, I've been DMing so many women on Instagram, emailing back and forth with other BRCA gals, and obviously TALKING ABOUT ALL OF THIS EVERY WAKING MOMENT with my husband, girlfriends, and family.
So after I last wrote, I have: met with 2 surgeons, had an MRI, had a mammogram, had blood work done, put a date on the calendar for surgery, AND had my pre-op appointment. I also have had 3-5 full blown panic attacks, 3 of which happened after jolting awake at 2 or 3AM . BARF. I have follow up posts that I'd like to write about the surgery itself, the darkest mental moments (so far), what has frustrated me most during this process (it's petty), and how I'm feeling now (hopeful). It's honestly been difficult, incredibly difficult, to sit down and write because my brain has 300+ thoughts running through it at any moment. I sit down, and there are too many words. I've never encountered this sort of frantic energy in my writing before. Hopefully I'm coming across clear and concise, and if I'm not, well... at least it's accurate.
So today, GOD WILLING, I wanted to share a bit about what it's like to have the "breast cancer gene" and why I hate it. First things first, there is a lot of cancer in my lineage -- breast cancer and colon cancer have devastated my family. Cancer always has been a consistent part of my life. So when I was 21, I found out about "BRCA" and made the decision that getting tested would be right for me. I had grown up under the impression that I would "just get cancer someday" -- so admittedly the test seemed redundant, yet there was something that intrigued me.
Alongside my mom, dad, and stepmom, I met with a genetic counselor who explained what BRCA1 and BRCA2 was, and then my blood was sent to a lab. As we waited for the results, I had this glimmer of hope -- Maybe I don't have the gene? Maybe I won't "just get cancer someday" and my future will change. Obviously, the genetic counselor was like sorry, you 100% have it and here is a printout detailing your likelihood of developing breast cancer in your lifetime. I was a college student, and someone had handed me a piece of paper that says "you are more likely than not to have breast cancer." (It also said a few words regarding melanoma and ovarian cancer, but I have to pick my battles today.)
So the screenings began. At that time, it was mammograms. I would have to leave work, drive myself across town, put on a hospital gown, and have someone smash my breasts like a pancake. And then, I would have to drive back to work and continue about my day as if it had never happened. It was incredibly lonely, to feel so young and like I was tackling these intimidating appointments. I had full support of my family and friends but I was so terribly lonely in those moments. I would often avoid or reschedule the appointments, even though I knew there was such a high risk, because I felt irritated and agitated and misunderstood. I didn't want to deal with any of it.
Over the years, technology continued to advance and I was soon told that mammograms actually cause cancer in women under 30. (What a hilariously cruel development.) For a brief period, I was told that breast exams during my annual screenings would suffice, until I turned 30 and then I would be getting a mammogram every 6 months. Sweet! 5 years of BRCA freedom!
After I moved to San Francisco, I established entirely new medical care. I did this very slowly because of the aforementioned loneliness and irritation. My husband (then boyfriend) would get so mad at me when I would tell him I had "forgotten" to call the cancer center and set up an appointment. (BRCA shows its teeth in many forms. For me, it's often NO ONE ELSE I KNOW HAS TO DO THIS CRAP.) Fortunately, I eventually got situated and it was one of the best care set ups I could have asked for. My genetic counselor told me that because of my risk, HELL NO basic breast exams weren't going to cut it and I needed to get my body in an MRI machine as soon as possible. She told me that I would have an MRI once a year, and then once I was 30, a mammogram once a year. And these would be spaced out 6 months apart so basically every 6 months you're in one machine or the other. This center also had a really nice and slightly pushy administrative assistant who called me and didn't let me get away with not scheduling my appointments or follow ups. So, I got my body in an MRI machine.
I immediately discovered that my body doesn't do well in an MRI machine. If you've had a breast MRI, you know the sheer horror of it all, but if you haven't, allow me to indulge you. You are told to undress from the waist up. It's very cold. You are given an IV. You are wheeled into a room with a massive machine and told to open up your robe, lay face down, and let your gals dangle through this open slot towards the floor. You are told, REPEATEDLY, to breathe normally because deep breaths will move your chest cavity and disrupt the imaging. There is nothing that makes you breathe less normally than someone requesting you breathe normally. The machine thuds and shakes, and you're just stuck in there, thinking "for the love of God it feels like I'm suffocating but do not take a deep breathe right now." And then, someone comes on a loud speaker and says, "We're going to administer the contrast now," which means the IV in your arm is about to pump some dye into your body for the imaging? All I know is that it feels like burning alcohol coursing up your arm and maybe even to your heart where it will kill you! It's all about 45 minutes and then they wheel you out and send you and your PTSD on your way. (It's worth noting, my mother says she finds her time in the MRI machine quite meditative and relaxing, so maybe all that anxiety is exclusive to me.)
I've mentioned it before, but my biggest problem with having BRCA2 is the urgency of it all. At my first MRI, they found a questionable spot. (I sobbed.) I was told to swiftly get to an ultrasound technician to see if it was in fact a spot, or a mistake -- MRI machines often show false positives. The ultrasound technician saw the same exact spot, and so I was eventually back to the imaging center for an MRI-guided biopsy which means all of the pain and anxiety and burning alcohol of a regular MRI but then they also stuck a needle deep into my breast tissue to get to the spot and test it. Now my left breast has a dumb little scar where they took out the tiniest amount of tissue to test. It was benign, but this process lasted 6 weeks. I had to deal with alarm bells and fear and rage and the appointments and phone calls took up a lot of time, for 6 weeks of my life. Now that's not technically so bad because I didn't have cancer, but to me, it was a look at my future. Every six months, I could be facing the same level of OMG IS IT CANCER? And eventually my breasts would be biopsied within an inch of their life and then eventually one of those biopsies would be cancer.
So I decided that constant testing (which translates roughly to "waiting for cancer") wasn't the life for me. I could either continue with this every-six-months-equals-panic thing, or I could have a mastectomy and lower my risk to below 5%. I thought about the surgery abstractly for a few years, and even attempted to go through with it last year. It's been a long process, a LOT of anxiety, and even with the fears I've been facing, I think it will give me a totally new opportunity and perspective. I will be in control of BRCA... not the other way around.