It should come to no surprise to you that I’m a genetic anomaly. Red hair, blue eyes, fair skin, freckles, and I can hang a spoon from my nose (I’m positive this is a genetic trait because both of my kids can do it, too). I take a lot of pride in those recessive genes. They make me unique. The gene I have a difficult relationship is my mutated BRCA1, also known as the BReast CAncer gene.
Here’s a quick science lesson. The BRCA1 mutation is passed on to you from a parent. If one of your parents has the mutation, you have a 50/50 shot of also having the mutation. My mom is the carrier in this scenario. My brother and I hit the genetic lottery in that we both have the mutation. It’s a little less serious for him but frightening none the less. According to the National Breast Cancer Foundation, about 1 in 400 people have a BRCA mutation. That’s one quarter of one percent. When this gene is mutated, it’s not as effective as it should be in preventing breast cancer by repairing broken DNA. Because of this, it’s estimated that approximately 65% of women with a BRCA1 mutation will develop breast cancer before the age of 70. It’s also more likely for a woman with a mutation to develop breast cancer much earlier in life than a woman without the mutation.
So. Imagine you’re a 20 something with her whole life ahead of her. You’ve watched your aunt battle this awful thing once and she’s gearing up to fight it again. You’re also a 20 something with severe anxiety, who is terrified of hospitals, needles, blood, the mere smell of hospitals, being sick… But your aunt is sick again and she says to you “do the test. Find out so you don’t end up like me.” And so you put on a brave face. You smile when you learn they can take your DNA from your saliva instead of drawing blood (you pass out BEFORE they even stick you with the needle). And you wait.
That’s exactly how this all came to me. My mom tested positive for the BRCA1 mutation. I kicked the idea of getting tested around. The knowledge would come with so much responsibility, so much fear, so much life long planning. Finally, I decided to do it, just a couple of weeks before my 25th birthday.
When I got the call, my brother had to drive 2 hours to pick me up and bring me home to my mom. I was terrified. I cried about it for a whole weekend. And then, I made an appointment with my genetic counselor at OSU (Leigha, who has been an actual life line to me for the past 7 years) and decided to look at this knowledge as a tool for my arsenal.
Yeah, it’s fucking scary. Going to the cancer center for my first mammogram at the ripe old age of 25 was an experience I’ll never forget. I was the youngest woman waiting for an exam; the youngest by decades. Everyone looked at me with pity in their eyes. Really, I just wanted to shout “I’M JUST BEING SUPER PROACTIVE!” so they’d stop looking at me. The nurse gives you a thermal print robe with light pink lining. It’s actually really comfy and kind of cute. There are adult coloring pages and all the old magazines and a well stocked snack bar. But then there’s the actual act of getting a mammogram. So much squishing and tugging and pulling and holding your breath and not moving. And then, six months later, I get an MRI. But only with a little help from my friend Xanax. My first MRI was completely unsuccessful. I honestly had no idea what I was in for and (surprise) I panicked. I think I was in the machine for a whole 30 seconds before I squeezed the panic ball and they had to take me out. That’s my care plan. Mammogram…wait 6 months…MRI…wait 6 months…mammogram…repeat for all of eternity.
The first time I saw my actual mammogram, my jaw hit the floor. Here’s why (I’ve never told anyone this). I was a very impressionable 11 year old. My grandpa had recently died of a heart attack and I was convinced that some sort of medial malady would surely be the end of me. Every headache I got…brain tumor. Every stomach ache…the plague. And then came the COSI health exhibit. I never should have gone into that room. It was about all the diseases humans can have. One whole section was devoted to women and cancer and I thought “oh my god…we really are cursed”. There was this display that had these sandbag-like breasts you could touch. One was what a healthy breast should feel like. The other, had a tiny pea shaped hard spot in it. You really had to dig around, but you’d find it eventually. This fake breast had cancer. Now, this display didn’t go on to talk about different densities of breast tissue or that it’s completely normal for yours to be a little “lumpy”, especially when you’re young. So that’s why when I saw my first mammogram, all I could see were all the white spots. But then my doctor told me that’s just what mine look like on the inside. Dense and yes, a little lumpy, and perfectly healthy.
But do I feel like I’m strapped to two ticking time bombs? Sometimes. Like when I have a check up scheduled and the date is getting closer. It just so happens that I have an appointment next week. This one is to talk about removing my ovaries which is just one of several preventative surgeries a woman with a BRCA mutation gets to think about. And that’s why I’m writing about it now. I want to bring awareness, obviously, but it just makes it so much easier to deal with if I put it out there. It’s less scary if I speak it’s name.
So I have this gene mutation. It makes me scared but it also makes me so, so strong.
Warming Up 