The BRCA Balance Beam

Every six months, I go to the doctor to make sure I don't have cancer yet.


This knowledge is a blessing, they tell you--it's a gift. And even on my worst days I have to agree. Knowing you have a gene mutation that gives you an increased risk of certain cancers really does hand you a lot of options in the way of hopefully not ever getting cancer. But then they take your blood and feel you everywhere and after you shake their hand and walk out the door they call you a few days later, when you're somewhere in Alabama on your way across the country, to tell you that your CA 125 levels are concerning. You need to have more tests as soon as possible.

I've been here before. After she encouragingly explains that you can breastfeed all of your unborn children at your own pace, the ultrasound tech gets quiet as she hovers over a black spot on the monitor; then calls the radiologist who makes you an appointment for a biopsy. 

Usually it's nothing. They're just being thorough, and that's why you got the gene test in the first place. But then the pressure is on--I have to eat better. Exercise harder. Stop leaving dishes in the sink. Call your friends more often. Train the dog to stop pulling on the leash. Have kids as soon as possible. Start planning some surgeries. Basically just get your life together, because you don't know when it's going to start to be over.

I've re-read this piece more times than I can count, and the following passage sticks to my soul every single time:

Shortly after my breast biopsy, I scheduled a prophylactic double mastectomy. I held the implants up to my chest wondering what it would feel like to have all of my breast tissue hollowed out and replaced with pockets of silicone against my bare rib cage...

...But then, I couldn’t go through with it. Every six months when I had the testing and traveled down the emotional rabbit hole I would schedule my surgeries, and once I had rebounded, I would cancel them.
— Patricia Fall, "Waiting for Cancer"

This happens to me too--the weeks before and after check-ups are a mindfuck. What if they find something? Even if they don't, is it just a matter of time until they do? And there I am, sitting on a table in a hospital gown, listening to a doctor tell me how lucky I am.

In my own mind--logical or not--having kids is the first step to not getting cancer. You have babies, you feed them, you get your ovaries taken out and your breasts removed. It sounds harsh and extreme but it helps me sleep at night. Two (three?) cute (blonde?) babies and new boobs, what's not to love? So I go to the appointments and a few days later I frantically schedule the follow-ups and finally they tell me great news, you don't have cancer and I breathe a sigh of relief; and then a few days pass before my brain says yet yet yet yet yet. 

And then, even though the small but occasionally present side of me that knows the statistics begs me not to, I go to a place where maybe I don't get to have kids--where maybe I don't choose surgery, but surgery chooses me. Where 28 is suddenly very old, and time is running out and it doesn't matter that you just moved across the country and your husband has a brand new job and your dog barks at children plus you guys haven't even finished unpacking yet and don't really even know where you'd put one baby, let alone two. None of it matters when you're overcome with grief over something that isn't even real yet. 

It gets obsessive, the need to plan these things. The puzzle is there and I created it and I think I'm holding most of the pieces, but I don't know how or where to start putting them into place.

When my mom got cancer for a second time and I got the gene test, she told me she wished she could take it away from me--the pain, the fear, the burden of not yet having cancer. I'll never forget that. And while she went through hell and one day I probably will too, I would never want her to carry this for me. I would never wish cancer on anyone, especially not my own mother, but if she didn't get sick again I don't know if I ever would have gotten the gene test. And I needed it, because it could save my life.

Because even when it's so terrifying you think you might fall down, it really is true what they say--it's a gift to know these things. And to not have cancer.

Not yet, maybe not ever.