Tuesday, September 1, 2009

Previvors vs. Survivors in the World Series of Love

"I have a confession to make," I told my husband recently. "All I do all day is think about boobs." He paused. "That's OK," he said. "Me too." Rimshot.

Remember that calm I brought back from vacation last month? Gone. Maybe it's because it's September, somehow. Summer is over. I'm teaching again. The months will fall away as the leaves wither on the branches and suddenly it will be time to give up my boobs. And I'm getting scared. (Apropos of this, I remember feeling similar anxiety -- though more of a giddy sort -- as my wedding approached. One day a few weeks out, as I put a container of yogurt in the fridge at work, I noticed the expiration date: it was after my wedding. I said aloud, to no one in particular, "By the time this yogurt expires, I'll be a married woman." So when it is possible to buy perishable items with an expiration date after my surgery -- "This yogurt will last longer than my boobs" -- that's when I know it's time to freak out.)

I've been asked to deliver a keynote address (doesn't that sound fancy?) at a fundraising event for FORCE next month at my alma mater. I'm certainly not shy about being BRCA positive, but standing in front of a room full of hundreds of people and actually opening my mouth and having words (many of them describing my boobs) come out is a different beast entirely. This blog allows me a modicum of anonymity. Next month I'll don a pink dress (because it's illegal to talk about breast cancer in any other color), stand in front of a group of undergrads and say, "Hey toots, I was once like you. Naive. Not a care in the world. Now I'm about to cut off my knockers." (Well, I probably won't say exactly that. I'll come up with something good; it'll bring the house down. Not a dry eye in the place. It will be better than Cats.) So naturally, with my impending speaking duties and my ever-nearing surgery, it's all boobs, all day long on the drive-in theater of my mind.

October, in addition to being the month of my glorious birth, is Breast Cancer Awareness Month (hence the timing of the fundraiser), and, in taking notes for my speech, I've been trying to figure our how I fit in to the festivities. There is a robust debate (love fest? reach around?) going on on the FORCE message boards about previvors (folks like me who are survivors of a predisposition) and breast cancer survivors and who is more brave. The original poster, a breast cancer survivor, wrote that she thinks the previvors are the real heroes. And then a chorus of previvors (yours truly included) chimed in and said, "No, you are the real hero!" And then they wrote, "No, you're better!" And we wrote, "No, I love you more!" And then it just devolved into a self-loathing/mutual love fest.

But the conversation raises some interesting points. Namely this: Previvors, despite the fact we're escaping the disease, might have it harder after all. Previvors never get the kind of support that breast cancer survivors do. People understand breast cancer survivors' decisions to have surgery; people look at previvors like we're batshit cray cray (or they say insensitive things about free boob jobs. Yeah. No.). Previvors never really know for certain if we are making the right decision; survivors don't have a choice. Outsiders will question previvors' choices, often right in front of our faces; no one would dare do such a thing to a breast cancer survivor. Breast cancer survivors get spoiled; we get uncomfortable stares and hesitant, monosyllabic grunts.

Part of outsiders' uncertainty about how to process our condition ("Wait, she's not sick and may not ever get sick but she's having surgery...") may be partially reflective of our own uncertainty ("Wait, I'm not sick yet and may not ever get sick but I'm having surgery..."). Or it could be a education thing: there are far fewer previvors out there than breast cancer survivors, and maybe when people encounter a rare specimen such as ourselves, they aren't sure what genus or species we belong to. Whatever it is, there is no question that previvors have to deal with nagging doubts--from others, from yourself--in a way breast cancer survivors don't.

Or maybe it's this: as humans, we have an incredible ability to think ourselves exceptional. We buy lottery tickets not because we know we'll lose, but because we think we'll be the exception to the rule! We self-publish our novels after they've been rejected by every agent in the industry because we'll be the one author plucked from obscurity and catapulted onto the national literary scene! We fantasize about bumping into Brad Pitt (or that vampire kid from Twilight, or Jack White, or Dr. Sanjay Gupta) in dark alley because once he looks into our eyes, we'll run off into the sunset together and have really acrobatic sex and live happily every after! This works in reverse, too. We know that flying is statistically very safe, but some people swear it off entirely, saying, "Oh, with my luck, I'll be the unlucky one" (this is also the subject of an Alanis Morrisette song).

Previvors don't do this; we are not optimistic about our chances. We're given a statistic, and that's this: we have an 85% lifetime risk of developing breast cancer. And this is what we hear: "You have an 85% lifetime risk of developing breast cancer." Outsiders, however, tend to hear: "You have a 15% lifetime chance of not getting cancer," and they say, "Hey, did you hear that? You might be one of the lucky ones." And we say, "I'm not counting on it." And then we go and cut off our ladyparts and people can't understand it, because human nature tends towards optimism even in statistically unlikely situations. Maybe we're going against human nature. And maybe that's why we get shat upon. Whatever the case may be, I didn't sign up to be a previvor any more than a breast cancer survivor chose her condition. And that we have in common. And that, at the very least, everyone can understand.

I have incredible admiration for survivors (who doesn't?) and have written many times of the awe I feel for their bravery. But I was so heartened to read the kind words from survivors about previvors like me. At least in the breast cancer community, we can all agree that we're all worthy of admiration. Now only if only we could help convey that notion to the general public, I think we'd be getting somewhere. So in conclusion, this Breast Cancer Awareness month, and maybe even before, be kind to your local previvor. They hurt, too.


  1. So well expressed as usual! And I'm glad there's a love fest 'tween survivors & previvors -- as there should be.

    Altho, I have to tell you, as a new breast cancer patient I have been shocked at how many people feel it's okay to second guess my surgical choice...from nurses in the hospital to a plastic surgeon I went to recently for skin necrosis. Things like, "Why did you want to do nipple sparing, it's not worth it." or "Wouldn't it have been better to do bilateral?" or my all time favorite, "Gee, too bad you couldn't have just done a lumpectomy."

    Seriously. Does that not kill you?

    Ah well. Either way we all do what we think we must to survive. Whatever it takes we each have our own boat to row up that same crappy stream. Although I do think a previvor choosing prophalactic mastectomies has more courage -- I wouldn't have had mine if I didn't have to, that's the truth. I had no choice. Part of me wishes I did...that I was like you in a sense and could waylay cancer before it got hold. But the other part of me is happy I got to live in blissful ignorance as long as I did...BRCA gals are so young it doesn't seem fair. Of course, none of it is really fair. And if there was a way to avoid it, to ensure I got to live to see my kids grow up....I'd lop them off myself.

    In any case, I know your speech will be utterly smashing, how could it not be? You will blow them away like you do me w/every post :D

  2. And now, I find you my kindred spirit. So well said, written, and felt through this screen. Your speech will be amazing, your life will be amazing,and surgery, well, that is hard. But you are not alone. And life on the other side of PBM is not all bad, I am proof of it. I can't wait to read more about your journey, as we travel it together!
    BRCA positive made me positive! Sherry

  3. Great post! Thank you so much.

  4. This was an excellent entry, as always. Like the others, I agree, you have a way with words, I'm sure you'll blow them away with your speech. Good luck!

    Teri S.

  5. You are an inspiration to all! All you think about is hope, which can make you stronger and more active. I also admire how you look at yourself in spite of your condition. I know you can make it through. :-)

  6. This is as far as I've made it in your blog and I so want to be your friend. We are within a year of the same age (I was born in 1978, we were both born in October, I think that we were both married in 2008, and we are both BRCA positive, (although I am BRCA1 and mine is passed from my mother's side). As of today, my boobs have 6 months to live. Thank you so much for writing your experiences for those of us undergoing PBM after you. I am very much enjoying your blog entries.