Thoughts on National Hereditary Breast and Ovarian Cancer Week, a guest blog, on Previvors.com

The lovely ladies behind the fabulous new book Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions asked me to contribute a guest blog on my thoughts about National Hereditary Breast and Ovarian Cancer Month. The post can be found here (and while you are on the site, peek around and have a look at all the wonderful resources they've collected there -- the links section will be especially useful for women taking their first uncertain steps down the yellow shit road of BRCAdom) but I've also posted it, with permission, below.

Happy National HBOC Week!

Thoughts on National Hereditary Breast and Ovarian Cancer Week by guest blogger, Steph H

Sunday marks the beginning of National Hereditary Breast and Ovarian Cancer Week, seven days devoted to spreading awareness of hereditary cancers and the genetic mutations that cause them. This commemorative week is an important step forward in educating men and women about family history and cancer risk. And we need this week. After all, most people have never heard of BRCA mutations. How do I know that? Well, until two years ago, neither had I.

Growing up, I never feared breast cancer. That’s because, aside from my grandmother, who battled it twice in her seventies and triumphed both times, breast cancer didn’t seem like something that could happen to me. And my experience with our health care system seemed to confirm this. Whenever I’d go see a new doctor, he or she would dutifully take my family health history (healthy mom, healthy dad, grandmother with postmenopausal breast cancer) and determine that I had nothing out of the ordinary to be concerned about.

But I did have something to be concerned about, something no doctor ever took the time to see (and something, until about two years ago, I knew nothing about, either). Hidden in my seemingly unremarkable family history was inescapable truth: my family – not my immediate relatives but my second cousins and distant aunts – was plagued by cancer. In just three generations, fourteen members of my family have developed some form of cancer, and eight women have developed breast or ovarian cancer. Very few have been lucky enough to remain unaffected.

These cancers are caused by a genetic mutation. And it turned out, despite the fact that he remains healthy to this day, my father was a carrier. That meant I had a fifty percent chance of carrying it as well. And if I did, my risk for breast cancer, as I had been assured by so many doctors, wouldn’t be that of the average woman. Instead, I’d have a lifetime risk of developing breast cancer as high as 87%.

All of this, however, was totally new to me when I went through genetic counseling, submitted to a blood test, and learned, indeed, I, too, was BRCA2 positive. I had never heard of hereditary cancer or the BRCA gene. I felt alone, and I was terrified. Over time, I educated myself, met wonderful women just like me, and made difficult choices to reduce my risk of getting the deadly disease that so few of my relatives seemed to be able to escape. Last December, I chose to undergo a prophylactic bilateral mastectomy, which reduced my risk from all but certain to about one in thirty. Those are odds that, no matter the sacrifices I had to make, I’ll take any day.

But until it affected me, I didn’t know anyhing about hereditary breast cancer. That’s why I’m so passionate about National Hereditary Breast and Ovarian Cancer week. There are undoubtedly thousands of other women out there like me who have no idea they are at high risk for breast and ovarian cancer. It could be because, like me, they inherited a genetic mutation that “hid” itself in two generations of men; or it could be that their family doesn’t talk about “female cancers” or keep track of distant relatives.

Whatever the case, this week, I hope we can start a national conversation and get people talking about breast and ovarian cancer. After all, if my father hadn’t spoken to his cousins, if he hadn’t learned his risk so that his daughter might learn hers – and, of course, do something about it – not only would I not be writing this right now, I would still be completely ignorant of my risk and how hereditary cancer might affect me. I truly believe knowing my BRCA status saved my life; I can only hope this week saves many more.

Things I Wish I Had Time to Blog About

I haven't had much time to blog lately, though my thoughts are never far from boobs, BRCA, and all the other booshit that comes with it. More on that, I hope, soon. But, for the moment, I thought I'd make a post of things I wish I had time to properly write about.

1) A week of awareness.
Earlier this month, the US House of Representatives passed a resolution to designate the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of the month as National Previvor Day. BRCA mutants now join the ranks of other causes and constituencies that have seven-day periods of commemoration, such as Home Care Aide Week, Radiologic Technology Week, and National Forest Products Week (this information from this useful site dedicated to demystifying which days throughout the year are dedicated to a particular cause.) I hope we do a better job of getting out the word than the Radiologic Technologists and Forest Producers because I have no particular awareness of those causes.

Much more information about HBOC week and National Previvor Day (which will be celebrated next Wednesday, September 29) can be found on Representative Debbie Wasserman Schultz's page and, of course, at FORCE. Download this poster, too. (On another note, could FORCE download a decent graphic designer? I mean, come on... My very first reaction when my genetic counselor handed me their brochure when I got my BRCA results was, "They need better marketing materials." I guess I'm a marketer first, a mutant second.)

2) BRCA positive? There's an app for that.
The Situation's got one. And now mutants do, too. Here's the spiel: "The Previvors iPhone app provides information and an interactive quiz that we intend to help raise hereditary breast and ovarian cancer (HBOC) awareness. Previvors are people who don't have cancer, but who are at a high risk for developing it. In honor of Breast Cancer Awareness Month, we intend to educate the millions of previvors about the common risk factors related to HBOC. The app provides the user with access to contact information for doctors, other healthcare providers and mammography facilities as a convenience to help them take control of their breast health. Users will also have access to other information sources and a newsletter relating to our new book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decision." Download the app here.

3) See world? I wasn't crazy.
Last month, during yet another tropical vacation (I treat myself, and my new rack, quite well, yes), the BRCA world was riveted by this results of this study, which confirmed, as this article says, the "benefits of prophylactic mastectomy and salpingo-oophorectomy in women with BRCA1 and BRCA2 mutations. Women who underwent the prophylactic surgery had a greatly reduced risk for breast or ovarian cancer and a reduction in cancer-related mortality." I was drunk on good rum when this news broke, but if I had known, I would have raised my daiquiri to all the ladies who make sacrifices so that, well, we can enjoy tropical vacations with delicious daiquiris in good health for many years to come.

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.

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.

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.

Two Years Ago Today...

I've had a lot on my mind this month, and very little of it has been BRCA-related, so I haven't felt like I've have much to share here recently. But today is a special day, and it deserves a post of its own.

Today is my second wedding anniversary. Making it to this mark is hardly a milestone (unless you are a Hollywood starlet whose martial bliss can usually be counted in hours rather than years), but, as a couple, my husband and I have endured more in the last two years than many face in decades. My BRCA journey is very closely related to my married life because exactly eight days after our wedding, I got an email from my father that would change my life. That's when I learned that a genetic mutation was responsible for the cancers that plagued my father's extended family and that I might -- might -- have inherited it, too. I remember exactly where I was when I read that email (sitting at the kitchen counter at my family's beach house, where G and I retreated after the wedding for a "mini-moon" (we went to Belize on our official Honeymoon in January 2009)), what I was wearing (damp bathing suit), what I was feeling (sheer dread). And so, although I didn't know yet whether or not I was a BRCA mutation carrier (or even really what that meant), I chart the beginning of this awful experience to that moment, eight days after the best day of my life.

In the two years since my wedding my life, and the life I hoped to create with my husband, changed rapidly. Four months after that first email: my dad tests positive for BRCA2. Four months after that: I test positive for BRCA2. Eight months after that: I undergo preventative surgery. Seven months later: here I am. And I feel like I've come to the end of one chapter of my BRCA journey.

That's why this wedding anniversary is so significant to me; it's like, at long last, now that I don't have to exert all my energy worrying about cancer or worrying about surgery, I can finally marvel at my wonderful marriage, my handsome husband, and my hard-earned health. I feel like today is a bookend to the story of my life over the last two years, and I can move out from under the shadow that hung over my first two years of my marriage.

It goes without saying that I am profoundly grateful to my husband, who had no idea what he'd be facing when he said "I do" two years ago, for his infinite patience and rare ability to make me smile, even when I'm feeling like shit. I've sung his praises twice before, and lest this space become a shrine to my husband, I'll say simply: I'm more in love with G today than I was on the day we married, and I know I wouldn't have had the courage to do what I did if it weren't for him. Thank you, my dearest G, for loving all of me, new parts and old.

Yesterday, G and I returned to the scene of the crime, so to speak, to the contemporary art museum on the edge of Lake Michigan and stood in the same spot, in the middle of the sculpture garden, where we became husband and wife two years ago. We kissed and pledged to each other our continued affection and devotion and, of course, I teared up because we'd traveled so far in the last two years and yet, there we were, back were it all began. We were new people, of course, but profoundly the same in our love, our optimism, and our hope for our future. Today is a milestone: two years may not seem like a lot, but when you've gone through all that we have, I'd say we have a lot to celebrate.

But I Would Run 100 Miles

(Anyone else remember that horrible song? I hope it's stuck in your head now, too...)

I am totally remiss for not having posted a report from the FORCE conference (at which, yes, I stood around half-naked and allowed women to ogle and prod the new rack). But this week has been beyond busy, and we leave tomorrow morning for a few days in Cape Cod (Happy Birthday America! Let's go sailing!), so I wanted to post this quick update. Last month, I announced an ambitious fitness goal (in part inspired by my new relationship to the capacity of my body) and challenged myself to run 100 miles during the month of June. Well readers, I know you've been biting your cuticles with anticipation, but here are the results. Drum roll please.... I did it! In fact, I kicked that goal's ass. My final total: 123.26 miles. Go me.

And speaking of running, at the FORCE conference I met the lovely Liza (and her very talented sister Grace) who's been blogging about running a half marathon before her mastectomy this fall. She's now training for a 10K, and at some point this summer, I'm going to run a race with my husband in solidarity with Liza. Health, fitness, and empowerment are so important to women in our situations, and I'm proof you can have an active lifestyle after surgery. (And Liza's proof you can have one before, too!)

So, in short: set goals, achieve them, and then go back out and run some more. It's what all the cool girls are doing these days.