Sometimes it's hard to know what to say to a previvor. After all, we aren't sick (we just have a higher likelihood of getting sick). And it's not like we just "came down" with the gene mutation (we've had it since birth). Last fall I wrote a post about what previvors do and don't want to hear, and I got a lot of positive feedback both from gene mutation carriers (who mostly said, "My thoughts exactly") and the people who love them (who said "Thanks for this guide to keeping my foot out of my mouth."). Since then, I've gone through a double mastectomy and reconstruction and have noticed that people still don't know what to say. So it struck me today, after reading this list of ways not to cheer up a cancer patient, that a new primer was in order. I call this list "How Not to Act Like a Boob in Front of a Woman with New Boobs."
1) Don't stare at my tits
I know, the temptation is almost too much. But my eyes are up here. During my recovery, I got a new haircut, complete with distracting bangs, in order to razzle dazzle people from checking out my new rack. It was not quite the sleight-of-hand that I'd hoped it'd be. Inevitably, the eyes would wander south, often apologetically. Here's the thing: yes, I got new tits. But I didn't do it for attention. I don't actually want people to stare at my chest; in fact, I want my chest to be so unremarkable, so very normal, that no one noticed I had anything done. So eyes up here. I can see you trying to steal a glance.
2) Refrain from coded compliments
Last weekend, I bumped into a friend I hadn't seen since surgery. She embraced me in a warm hug, stepped back, looked me over, and declared, "You look great!" I know she meant to be kind. But I couldn't help but wonder, what the hell did you expect me to look like? Deformed? Emotionally and physically scarred? I heard this -- "You look great!" -- a lot right after surgery, and I wanted to take it in the spirit it was intended, but I always heard something slightly different. What I heard was more along the lines of: oh, she doesn't look like she had a mastectomy. Or: oh, phew, she doesn't look as bad as I feared. I know it's coming from a good place (and I've likely been guilty of this, too), but as innocuous as it might seem to the speaker, it sounds much more coded (and loaded) to us. When I saw my friend this weekend, what I wished she'd said was something like, I like what you're wearing, or I like that new haircut, or you look pretty. But nothing is better (or linguistically more strategic) than saying simply, "How are you?" It puts the ball in our court, so when we say, "Oh, I'm doing really good, really happy to be healthy again" and you respond "Well, you look fantastic" we know you mean it.
3) Don't tell me I should have gone bigger
This may come as a shock to those who confuse the very different procedures of breast augmentation and breast reconstruction, but most women aren't going into this hoping to win circus tits as their consolation prize for carrying the breast cancer gene. Sure, some women go bigger, some women go smaller, and many stay the same. The difference between a boob job and a recon is that, with the former, you want to look like you've had work done; for us, we just want to not get cancer. The truth is, I have no idea what cup size my new boobs are. Despite popular misconception, boob size isn't at the forefront of our minds when deciding on reconstruction. In fact, it's often left to the plastic surgeon's discretion (they take into consideration the size of your rib cage, your height, and your natural breasts when deciding what size implant will look best on your body). When I first consulted with my doctor, I told him I wanted to be about the same size or maybe a half cup fuller. And that was the last time I spoke to him about it. The boobs I woke up with, from my vantage point, seem bigger. But really, they are just so differently shaped (so much more spherical than the distended bags of flesh that formally occupied this space) that it makes comparison difficult. Most of my old bras (size C) no longer fit, and some of my clothes are tighter in the bosom region. But even though I now buy bras a cup size bigger (hubba hubba), I don't think my breasts have changed that noticeably (especially in clothes). And that's exactly what I wanted. Believe or not, this wasn't about vanity; it was about health. So I don't regret not taking this opportunity to go dramatically larger; that's never what this was about.
4) Say something, Or: Don't mistake this for the end
When I first learned my BRCA status, I got lots of call and cards. When I went through surgery, I got all of that plus flowers, gifts, food, you name it. But now that I'm on the side side of all of it, there isn't much to say -- or so it must seem to outsiders. The truth is, being BRCA positive is a lifelong ordeal. When I had my mastectomy, I didn't repair my wonky genes; I just removed the part of my body they were most likely to affect. But I'm still at high risk for a number of other maladies (first and foremost is ovarian cancer), as are my family members who are also affected by the mutation. This isn't over. Sure, I've gotten through surgery and reconstruction, to me the most urgent actions I could take in light of my BRCA "diagnosis". But I've still got to consider reproductive options, and whether or not I want to avail myself of technologies that will allow the mutation to end with me. And before too long, that same anxiety I felt about my breasts -- that same fear they were, at any moment, without notice, going to kill me -- I'll feel about my ovaries, and then I'll be in a hurry to yank those out, too. The thing is, being BRCA+ is a lifelong condition, and the kindness that people showed me when I first learned my status was nice and reassuring, but I hope people realize I'm always going to need their love and support in the face of the many complications wrought by my faulty genetics.
Previvors will always be an odd bunch. Lots of people don't know what to make of us (which I think explains why were so quick to form communities and fellowships within our mutant ranks -- no one can quite get it like someone else exactly like you). And sometimes, it's hard to know what to say or how to act around us. The truth is, we're a bit of a conundrum: we want to be normal but we also want it to be acknowledged that we're not (and therefore might need a little more compassion and sympathy, require a little more patience and understanding, from time to time). It's a delicate balance, and one that's not easy to achieve. If all else fails, of course, just try not to gawk at our tits. We can see you staring.