Wednesday, August 25, 2010

The Elephant in the Room

There is an elephant in the room (or should I say, on this blog) and it's time to acknowledge it. Before I went on hiatus this summer and began posting less frequently (more on why that happened in another post), I "came out" and said something very hard for me to admit (no, nothing about toenails in this post, promise). I wrote about considering a revision surgery and the panoply of emotions (ranging from guilt to self-righteousness) I felt about it.

The news item here is this: for the moment, I'm no longer actively considering revision surgery. Several factors played into this decision. 1) The "imperfections" I perceive are not that big of a deal -- to me or to others. When I stood half naked in the show and tell room at the FORCE conference in June and allowed strange women to stare and poke, a lot of people had very nice things to say about my reconstruction. Someone said, "Yours in the best reconstruction in the room." Another said, "Thank god, these other women were scaring me. Your breasts look amazing." Others asked, "Where are your scars?" (They are hidden under the fold of my breast.) Still others wondered, "How did you get such natural looking nipples?" (They are my natural nipples, that's how.) Needless to say, this was an ENORMOUS confidence boost for me. And, frankly, there were other women in that room in way more dire need for revision than me, and yet they seemed perfectly happy, proud even, of reconstructions I would never dream of showing any one else. I guess beauty truly is in the eye of the beholder. And what I'm beholding seems much more beautiful to me than it did a few months ago. 2) I don't think I have time. Or, put another way, I'm going going to prioritize my time so that I have some to go through a revision surgery and recovery. It's just not at the top of my list. 3) I realized that, all things considered, I was very lucky. My recovery was textbook. I had zero complications. And that's not a guarantee for anyone. My cousin lost one of her expanders to infection and was flat-chested for months while she recovered. Teri, to whom the universe really owes a break, has been suffering complication after complication. And my friends R, for whom I wrote this post in March, has had nothing but heartache and boobache (not to metion four surgeries total, with more on the horizon) since her original PBM went wrong. And yet here I am, complaining because I've got a little dent in the side of my right boob that I HAVE TO POINT OUT TO PEOPLE IT'S SO INSIGNIFICANT. So I've decided not to go stirring the pot. What if I get an infection after my revision (the surgery I've chosen to ameliorate a perceived imperfection) and wind up in worse shape than I started? That's not a question I'd like to answer right now. So I'm not going to ask it.

So that's the news. But there's more to the story than the headline.

As is often the case, BRCA bloggers synchronize in groupthink, and Dee, as well as Teri, extensively, have recently tackled the question of how careful we have be to with our readers, and how much influence we as "public figures" (ie: crazy ladies who decided to overshare on the interwebs) have on their decisions.

Right after I wrote that I was considering of a revision, I got (as I do occasionally) an email from a woman seeking advice. I responded with my usual verve and enthusiasm, but it felt somewhat disingenuous: how could I advocate for someone else something that I had my own mixed feelings about? How can I be a voice of certainty (yes, you can do this and you should do this and there is life on the other side) when my results weren't quite what I'd hoped for? It's a question that I don't have a ready answer for.

But here's what I do know: despite the fact that I'm not 100% thrilled with my cosmetic result (let's say I'm 87% thrilled -- there's a number BRCA mutants might be familiar with), I am IMMENSELY GLAD I CHOSE TO HAVE SURGERY, no matter the outcome. I recently came out the other side of a very stressful period in my life (more on this later, promise), during which my anxiety levels were so high they were interfering with my daily functioning. And it served as a reminder that I am not cut out for uncertainties, for periods of hopeful but tortured waiting. In other words, I was reminded I am not the kind of gal for whom surveillance would have been an option. My quality of life, despite the small dent in my boob, is about a thousand times better than it would be if I kept my old dentless boobs and had to subject them to scanning and poking and waiting and hoping every three months. So, despite the fact that I've opened my mind to the possibility of revision (and, for the moment, have tabled it) I don't regret what I did or dislike my doctors or feel that I chose the wrong reconstruction. I still think surgery is good option (though not a perfect one; Dee articulated this well here) for women who really want to do all they can to reduce their risk of breast cancer. And I still maintain that one of the greatest benefits of surgery is the peace of mind it brings, especially if fear of breast cancer motivates you (as it did me) to have surgery in the first place. And I know that, for me, this was the right choice.

This is major surgery. Things can go right, which, luckily they did for me. Or things can go wrong, as they have for so many others. What your outcome or result will be is impossible to know (dang crystal ball's broken again). But I still want to be a resource for people considering this, and I want to be honest, even if sometimes it means admitting that not everything is puppy dogs and lollipops on the other side of the rainbow. There are sometimes dents in the road (or the boob, in my case). But you can steer around them.

Tuesday, August 24, 2010

Lessons Learned from Feet

I've written about a lot of gross things on this blog (gynecological exams, surgical drains, sutures and incisions), but what I'm about to talk about puts that all to shame. Fair warning: prepare to throw up in your mouth a little.

Earlier this summer (deep breath, you can do it) my... (oh god, the internet is so populated by awful things, why am I contributing to it?) TOENAILS BEGAN TO FALL OFF.

(There, I said it. That was harder to type than "I decided to amputate my breasts.")

I've lost two outright, another two are threatening to exit stage left, and the remaining half dozen have seen better days. Now, the astute among you might already have figured out why this scourge has afflicted my feet. But put that aside for the moment. Because this post isn't really about my toenails. It's about something else.

You see, during my BRCA year, whenever something hurt, whenever something itched, whenever something got hot/got cold/turned white/turned red (you get the picture), my first thought was: It's too late. I'm dying. The cancer has come.

But when I lost my first toenail last month, I didn't immediately jump on WebMD and look to see if breast cancer or ovarian cancer causes toenails to mysteriously and somewhat unexpectedly (though not necessarily disgustingly -- there was no pus, no blood, just suddenly a toe without a nail; for the masochists among you: if you really want to lose your lunch do a Google image search for "toenail." You've been warned) fall off. My first thought wasn't: you're dying. My first thought was: you better get yourself some new running shoes.

That's because it wasn't anything molecular or sinister than was causing my toenails to make like a tree and leaf. It was all the running I've been doing. This really wonderful thing (ie: running) that was precipitated by this other wonderful thing (ie: the empowerment I felt after surgery) led to this really revolting things (nails separating from toes). But even that last part led to something good: an opportunity to recognize that I no longer live in constant fear of cancer.

And that's something I'll gladly part with a couple toenails to see.

PS: They're growing back. Ah, the miracle of life.

Thursday, August 12, 2010

GoodbyeToBoobs in the news!

Well, the Bright Pink newsletter, that is. Check out a piece I wrote about my changing relationship to Ovarian and Breast Cancer Awareness months, and the importance of thinking about the folks who have neither of those things to be aware of -- ie: the men in our families -- and how their genetic heritage affects our own. If I have one soapbox as a BRCA blogger, it's that I want to remind young women (and men) to consider both their mother and father's family histories of breast and ovarian cancer. I'm incredibly lucky that, despite having no obvious warning signs (no doctor asks about your father's cousin's health when assessing medical history), I know my risk and had the choice to defy it.

If you're having trouble reading that (click on it once, then click on it again to enlarge it), check out the full newsletter.

To the new women visiting this blog for the first time, welcome! And if you have any questions about anything, please feel free to email me.