Saturday, December 18, 2010

Happy First Birthday to the New Girls/Happy Anniversary to Me

(The above photo represents the bulk of my memories of the first day after surgery: my morphine pump, and the warning attached to it. In the background is Snuggles, my bear, whom I've had since I was seven. Which makes him old enough to rent a car without having to pay extra for liability insurance.)

At this moment one year ago, I was far away in some dreamless place, silent, unconscious, immobile, while back on planet Earth, surgeons first removed and then reconstructed my breasts. Yesterday, as I was leaving work, exchanging pleasantries with my colleagues about our plans, someone asked, "So do you have anything exciting going on this weekend?" And I responded, "Actually, yes, I do. I'm celebrating an anniversary." And sort of left it at that. Because how do you explain to someone you don't know all that well that December 18 is just as important as my birthday, just as important as the day I met my husband (and the day I married him), as important as Christmas and New Years and every other holiday, too? Because December 18 wasn't just the day I had a mastectomy; it was the day I beat cancer. (No matter that I didn't have it yet. I did what I did so I never would. And that's still beating cancer.)

So what are the characteristics of this most unusual anniversary? First off, it's an exceedingly happy occasion. This is no funeral, people. Today, I'm celebrating health, and marveling at the extraordinary measures I was willing to go to protect it. Today, I don't mark the death of my breasts; today I honor their rebirth. Secondly, today, I will celebrate my body and its capacity for wonderful strength. As I woke up this morning, I stretched -- a glorious, full-bodied lengthening animated by pops and cracks and creeks -- and I remembered how confined I felt those first weeks after surgery, unable to move, afraid to tear something, sore and bruised and afraid of my body. So today I will go for a run; I don't know how far or how fast I'll go, but that's beside the point. I will celebrate my health by doing something good for it. Finally, I will treat myself well. What that means yet, I'm not quite sure: I'm still in my pajamas, working my way through my second cup of coffee (oh, where's my waiter when I need him? Refill soon, darling, please!), with a day full of possibility still ahead of me. Tonight we'll go out to dinner, a boobversary dinner, and toast the new rack. And then we'll head off to two parties, a birthday celebration and a holiday party. But between now and then: I imagine a cookie or two, perhaps some shopping. Maybe some pampering. I've got a busy day.

Believe it or not, I have mostly fond memories of my surgery (though less so of the immediate aftermath). I have, first off, never felt so loved; support and love and flowers and vegan desserts appeared from every corner. And though I was terrified in the months and weeks leading up to it, the day of surgery, I was calm. I remember feeling so lucky to have a husband to hold me and a mother to scratch my back through my thin hospital gown. I was comforted by the many people I knew were thinking of me and rooting for me and wishing me well. So today isn't just a happy day commemorating an unhappy day; it's a happy day in remembrance of a happy day.

And I have a lot of good memories: I remember the food I ate the night before surgery (mmmm... fake duck). I remember the cake my BFF from Texas ordered from the same vegan bakery our wedding cake cake from (mmm... peanut butter chocolate ). My dear friend A, appearing out of nowhere beside my bed, sitting with my husband as I drifted in and out of consciousness. The completely selfless Z and P who sat with my parents while I lay in surgery. The first shower. The fist glance. The fucking relief.

So today is a good day. Life has gone on, but it's important to acknowledge where I've been: I've gained as much in this process (confidence, certainty, clarity) as I've loss (boobs, but more importantly fear, too). And today's the day when it all started. So I'm unzipping my hoodie and staring down and saying to my hooters, "Happy first birthday, girls." And happy anniversary to me.

Monday, December 13, 2010

I am sad -- and conflicted about my grief -- about Elizabeth Edwards

The news of Elizabeth Edwards’s passing hit me unexpectedly hard. Like a gut punch hard. Which I know is a bit dramatic, considering I’ve never met the woman, though I feel as if I know her intimately.

When news broke last Monday that Edwards’s breast cancer had spread to her liver, I was saddened but not surprised. After all, this was a woman with terminal cancer who had publicly acknowledged that she was dying and promised to live with grace the last of her allotted days. But following so soon thereafter the news of her death—-just one day--later, I felt deeply aggrieved, like she was cheated out of some valuable remaining days and I the closure with which to process her demise.

It’s sad when someone dies, especially someone so unobjectionably nice and good and gracious as Edwards. A cheated-upon wife, the mother of young children, a woman who has known more loss than most, Edwards was a sympathetic figure. I felt a connection to her, a connection facilitated by the very disease that killed her. We had that in common--breast cancer. But how silly that sounds. I never had breast cancer; she died from it. And yet--she is the reason I chose to do something so radical about my risk. We forget too often that breast cancer is a deadly disease, that it comes back once it’s “cured” and often with a vengeance. We forget this because the smiling Elizabeth, the healthy Elizabeth, the optimistic Elizabeth in the photographs that accompanied her obituary were not depictions of the woman she likely was at the end--ravaged by the disease, perhaps bald, perhaps wasting. The face we see was a woman living with terminal cancer, not the woman as she died. Not that we should see that--that’s private, of course. But it adds to the public sanitation of the disease. “But she looked so good! How could this have happened?” we ask. “I didn’t realize things were so bad. She seemed the picture of health and acceptance.”

When I cried over Edwards’s death, I cried about the insidiousness of cancer, its mercilessness, its ceaseless appetite. I cried for her young kids. I cried for the days she wouldn’t live to see, the people in her life that would have to find a way to go on without her. But I also cried because, in some ways, I felt guilty. That I had a chance that she did not. That I got a get-of-jail-free card and she didn’t. That I most likely won’t have to go through what she did.

Which leads me to another point. This time last year, with the countdown to surgery reaching single digits, I was still terrified of breast cancer--terrified that they’d open me and have to sew me up again, my breast too full of tumors and black goo and all that to make any difference. This time last year, I was actively afraid of breast cancer. My risk weighed on me. If Elizabeth Edwards had died on December 7, 2009, I would have had only one thought: that’s going to be me.

And yet, as I approach the one-year anniversary of my risk reducing surgery, I realize how precipitously my fear of breast cancer has also dropped. Not only did I greatly lessen my chance of getting breast cancer, I’ve all but eliminated the fear of it, too. And that’s incredible. I can read news of Edwards’s death and not be afraid. I can be sad, but I’m not afraid.

Monday, November 22, 2010

The Century Club

This is my hundredth blog post, which, of course is a big deal. And I want to write a REALLY IMPORTANT POST fully reflecting and honoring the momentous occasion. But, as usual, I’ll probably wing it, see what my fingers poop out and move on.

How about this for a theme of my hundredth blog post: time. It seems fitting. My life over the last nineteen months is meted out on this blog, and the posts mark the passing of time, the reaching of decisions, the moving past and through difficult choices, the celebration of new beginnings.

Next month will be the one-year anniversary of my surgery. It’s been a little more than eleven months since I underwent a prophylactic bilateral mastectomy, and I have now lived with these new breasts on my chest longer than I lived with the knowledge of my BRCA status and my natural boobs. In other words: I had surgery a little more than eight months after I learned my status; I’ve had these new hooters for 28% longer. So, should I have waited? Should I have let more time pass?

It’s a question I ask myself when I meet women who are BRCA positive and have known their status for years but say things like “I’m only now beginning to understand what it means and make decisions.” I guess my problem was, from the very beginning, I understood too much what my status meant, felt too deeply the need to take immediate action, and made a decision about what do with the results before I even learned them. I hear a lot of women say, “I got my results and just put it out of my head.” And I can’t relate at all. Once I got my results, that knowledge completely consumed all my brain space. And the only way to get my head back was to sacrifice my tits.

Would I have gotten that brain space back if I had waited a little longer, let the information settle in, got more comfortable with my genes? I can’t say with certainty, but I doubt it. It’s not like this knowledge – this knowledge that I need to make some decision at some point, hopefully before my body made the decision for me – isn’t something you can get over; you might be able to set it aside for a moment (or much longer, if you are some one much more capable of denial than I am) but the fact remains: you must do something (whether surveillance or surgery). Surveillance, from my perspective, would only compound the impact of that knowledge; mammograms and MRIs only serve to remind you of your risk.

The truth is, I knew from the first that I wanted to have surgery. I was never thrilled with any of the options presented to me, but surgery made the most sense for me. And once I really confronted that choice – began seeing doctors, meeting other women who'd gone before me – it wasn’t a question of if but when. So why wait? In the weeks leading up to my surgery, when, at weaker moments I considered calling the whole thing off because I was just SO fucking scared, I reminded myself that I'd be doing this at some point. Why not now?

That now is now nearly year ago, and while I’m never glad I had to have surgery (“had to have” is a loaded phrase, but suffice it to say it wasn’t my tits that were the problem there: my brain was. I’ve mentioned hundreds of times,but it’s not equipped to deal with uncertainty and anxiety) I’m glad I got it out of the way. A lot has changed in those eleven months. Not only do I have new hooters, I have a new job, a change I was only able to make after I realized that I’m stronger than I ever thought I could be. My job resulted directly from the empowerment I felt about conquering the hardest fucking thing and coming out alive and happier on the other side.

So what would I look like, and what would my life look like, today if I had waited? I don't know for sure. But I'm glad I didn't. There is never a good time for something like this, never a perfect moment to make a life-altering decision. But I'm glad I made it last year. I've had nearly a whole year to see things from the other side, and I like the view from her much better.

Friday, November 12, 2010

Real Housewives of BRCA

I have dirty secret: I love bad TV. (I also, for the record, love really good, really cerebral TV: I think shows like Mad Men and The Wire, both of which I count among my all time favorites, are so good they are like reading complex novels -- and just as challenging.) But in my quest to straddle the gap between high-brow (my work, my fancy degrees, my bookshelf, my magazine subscriptions) and the low-brow (basically any reality show where I have as much in common with the characters as I do with meerkats; ie: I frequently doubt we're members of the same species), I have become addicted, yes, to the Real Housewives cohort on Bravo. (Hubby’s a convert, too: we look forward to evenings with our “girls” and some Thai takeout.)

I like to say watch these shows anthropologically, mentally noting the strange plumage and rituals of an exotic tribe. But it's more than that. It's hard to put my finger on exactly what compels me about this show: part of it's the conspicuous consumption, part of it's the voyeurism. But, I think, on a certain level, I’m attracted to it because it deals in, likely inadvertently, aspiration, reinvention, and fakery -- in other words, all of the complex human traits that might be found in characters in a great novel. The difference is, the Housewives are blissfully un-self-aware. And that's where the comedy comes in. When Teresa, of New Jersey, was revealed to be nearly 11 million dollars in debt (how does that even happen?), her entire persona was shown to be a facade, her gaudy, architecturally-incongruous mansion a Potemkin village. She's fooling no one but herself. More comedy gold: last night, on the Beverly Hills edition, Camille Grammer, now ex-wife of Dr. Fraiser Crane, said she would feel cramped in a 3500-square-foot, three-bedroom apartment in Manhattan. Because, you know, New York is known for its spacious -- and affordable -- real estate. Really, I'd like to have it so rough. Who are these people?

I have nothing in common with any of these women, with their fake breasts and fish lips. I think the show is supposed to make you feel bad: look at all the stuff they have that you don't. But I don't feel that way. It reminds me how happy I am to be in a marriage where, above all else, we value communication and equity. Sure, who wouldn’t want a closet full of Louboutins? But I don’t want them at the expense of my independence. The Housewives, then, both fascinate and repel me, often in equal measure. They are windows into a world very different than my own.

So imagine my surprise when, out of nowhere, we cut to Camille, she of beautiful body and sad eyes, getting a manicure and talking with her mother about the results of her recent BRCA 1 & 2 screening. What? BRCA on Bravo? Camille, she reveals, is BRCA positive, a carrier of the same mutation as her mother, who is currently batting breast cancer. Wait, that’s huge. BRCA just got more air time and was put in front of more people than were likely reached during the Hereditary Breast and Ovarian Cancer Awareness and Previvor campaigns this fall. And then, typically, Camille, California-ly, says, “it’s all about positive energy.” Well, actually Camille, it’s not. But she said she’s being monitored and had recently undergone a battery of tests, so it seems even if her head is distorted by new age thinking, her doctors have her following a strict surveillance regimen.

All of which, of course made me think – does Camille know what she’s up against? Did she receive good genetic counseling? Is she aware she, at her age, should probably consider an oopherectomy? In other words, I wanted to help this woman -- this woman who until moments before was a caricature, and exaggeration, a strange being from the planet Restylan -- because we had something very important in common. I hope she’s getting the care she needs. This is a woman who is very well attended to in every other aspect of her life -– serviced by nannies and assistants and personal trainers and creepy family friends who make passes at her in hot tubs in Hawaii – and I just want her to be as vigilant about her breast and ovarian health as she is about maintaining her twenty-six homes.

And I hope people who heard her talk about BRCA last night, and who wonder about what that means and whether they should be screened for it, find the answers they need, too.

See, bad TV can sometimes be (and do) good.

(Apropos of nothing boob related, Richard Lawson has the best recaps on the internet of the Hausfraus over at Gawker. Read and weep -- with tears of laughter.)

Thursday, November 4, 2010

A letter addressed to my (dearly departed) breasts

Many years ago, when my grandmother passed away, my distraught grandfather lamented that one of the hardest things was continuing to receive mail -- mostly junk -- addressed to his dear Alice. "She's gone. Don't they know that?" he wailed.

I never knew what he meant, though I could imagine his anguish, until today. Because today I got a letter addressed to my dead breasts.

It was an invitation to participate in a study "to understand the impact of having breast imagining procedures done." It goes on to say "Not only are we looking closely at the results of your tests (mammograms and MRIs) but how these tests make you feel." Well, folks, I guess you missed the memo, but I no longer have breasts or any need to image them. But how does that make me feel? A little weird, if you want to be perfectly honest.

I had to laugh, if not wince a little, too, when I read the letter. I forget ALL THE TIME that I don't have breasts anymore. That's because my fake ones are so good they even fake me out. And it's also because, unlike before, when I had my might-kill-me-at-any-time natural but rogue boobs, I don't obsess over them. So it's jarring at times to be going about your day, going through mail, and be -- BAM! -- reminded that a) you don't have tits anymore, and b) not everyone knows.

The letter came from a hospital where I had my one and only MRI and with which I consulted when I considered surgeons to perform my prophylactic mastectomy and reconstruction. But I ultimately chose another hospital and another set of doctors, so quite literally, according to their files, I'm just a high risk woman, waiting to make a decision. That's why they sent a letter to my boobs.

Little did they know...

Wednesday, October 27, 2010

Ten Years Hence

So I went to my ten-year college reunion this weekend. It was, by turns, an ecstatic, surreal, and occasionally horrifying and anxiety-inducing experience. I have almost nothing but fond memories of college, few of which are at all academic; I basically went to camp for four years on my parents' dime, drank a lot, made a lot of friends, travelled around the country and the world, and generally had the time of my life. In a lot of ways, I'm glad I'm no longer 20 (aside from some inconveniences -- like electric bills and crows feet -- I like being an adult), but it's always fun to revisit past selves. Most of my closest friends to this day are the ones I made in college, but there are those with whom I have no lasting connection that I was still very excited to see, if only just say, hey, let's not pretend we're going to rekindle anything here tonight but I just want to let you know I'm happy that you are happy and wish you only the best.

That said, I felt very palpably this weekend that I'd changed, both since college (of course) and since our last reunion. In many of those ways, I've changed for the better: I graduated from college completely aimless, ambitionless, and generally in poor hygiene. Today I've got a career I can be proud of and nothing but goals and aspirations and hopes for the future. Also, I now wear deoderant. I look back on that little hippie kid in thrift store clothes, hemp necklaces, and facial piercings and almost don't recognize her. And even the mixed-up version of myself I was at our five-year reunion (still at the beginning stages of my first grown up job, separated from my boyfriend (who, about a month later, would come crawling back; now he's my husband), overweight, still smoking cigarettes, and generally poorly dressed) seems like a character in a movie I once saw. I have changed; I've grown up, things are moving forward, I'm learning everyday to be a better version of myself.

But let's be frank. I'm different in a very physical way, too. When old friends casually asked, "So, what's new?" I'm certain they didn't expect me to point to my tits.

And here's the thing. It may have been the memories. It may have been the excitement. It may have been (probably was) the wine. But I was proud to tell people about what I've been through, if only to be able to say, look, I'm whole and happy and if I hadn't told you about any of this you wouldn't have ever suspected it but yeah I've been through some shit in the past few years since we've seen each other last thanks for asking. I don't like this tendency I have to over-imbibe and then spill my secret (I've done it more than once); and I don't think everyone on earth needs to know (like, I really love my hair dresser, but do I tell him? why would he care?) but rather than beat myself up for oversharing, I'd like to think that the ease with which I'm able to tell people about my surgery indicates a deep comfort and acceptance of my decision that I've fought long and hard for. At ten years, most people share news about jobs and spouses and kids; the news I had to share was a little different, but no less important. People are proud of their kids. I'm proud of my girls.

One other thing: I gave (and received) more hugs in two days than I probably have experienced in a whole year. And here's the exciting part: I FELT every single one of them. I'm no longer numb! I have feeling back already! In so may ways this weekend -- that I was there to experience it, that I came through surgery physically and emotionally intact, that I could feel my old friends as they pressed against me -- I remembered how lucky I am to be who I am, despite the mutation, despite the unfortunate sartorial choices I've made, despite the mistakes that I wish I could undo. I may get a little loose-lipped around the vino blanco, but I've got a story (let's not call it a secret, k?) and I want to tell it.

Monday, October 18, 2010

Spokeswoman Redux

Long time readers may remember my debut as a (I've Never Had) Breast Cancer Spokeswoman last year. The text of my speech, which I delivered as part of a fundraising partnership with a sorority at my alma mater, can be found here.

The sorority once again partnered with FORCE this fall, once again held a fundraising event to benefit mutants like me, and once again invited me back to speak. This year's talk was a lot more informal -- I was invited to chapter dinner (A surreal experience to be sure; in a former life, I too was a sorority girl -- shhh! don't tell anyone -- and vaguely remember dinners like that. In fact, it was pretty much as I recall (as if from a movie I saw once starring someone that looks a little like me), except all of the girls seem to be about twelve, wear gym clothes -- regardless of whether they have been or are going to the gym -- and have smart phones.) and spoke casually in their living room afterward. The idea was to put a face to FORCE -- to show them how their fundraising helps people like me, and how FORCE is a unique organization that addresses a small but underserved portion of the population. I also got a chance to update them on my progress since I saw them last. Overall, I think it went rather well. My speech is below.

Thank you so much for having me here tonight, and for inviting me back to speak to you again. I’m so grateful that you have taken such an active interest in promoting breast cancer awareness and for supporting FORCE, a group very close to my heart.

For those of you who heard me speak last year, you may hear some things you already know. But for those of you who I am meeting for the first time, I want to be very clear that I’m not here tonight to scare you. I’m hear to teach you about something that, until it came into my life, I’d never heard of. I’m here to make you smarter than I was so that should this ever affect someone you know, you’ll be a step ahead.

Basically, I’m hear to talk about breast cancer, but I’m not your average breast cancer survivor. In fact, I’m not a breast cancer survivor at all. Let me explain. I am a BRCA2 gene mutation carrier. Essentially, I have a typo in my genetic code. Though the error may be small, the problems it causes can be huge. Because of this little misspelling, my body can’t suppress tumor growth, especially the kind of tumors that like to make their home in soft, dense breast tissue and my delicate reproductive organs. And because of this, I’m much more likely to develop breast cancer—-about seven to eight times as likely as the average woman—-and if I did, it would likely strike me young, be very aggressive, and probably recur.

Women like me, who are not yet sick but are facing a nearly 90% lifetime risk of breast cancer, are called “previvors.” We are survivors of our predisposition to developing breast cancer, and we “survive” by taking steps to control our health, and to do so we have a couple of options: 1) we can submit to a intensive routine screening: mammograms, MRI, ultrasounds, and clinical breast exams, every few months; 2) we can take a chemoprevention drug that puts us into temporary menopause for five years and lowers our risk by about half (in other words to about 4 in 10, but still three times or more the average risk); 3) or we can chose to have preventative surgery. In other words, we can opt to remove our breasts before they ever try to kill us. Or, as I like to think of it, we have the mastectomy we’d probably have eventually anyway, but we get to skip the chemo and radiation and, oh yeah, the whole having cancer thing, too.

Those of you that saw me speak last year know which route I chose. When I stood before you then, I was a little more than two months away from a preventative double mastectomy, and I was absolutely terrified. But tonight I stand before you a completely changed person. On the outside, I don’t look that different. Sure, I have bangs now, but otherwise I’m pretty much the same. There are a few things you can’t see, however. Underneath my clothes, I have two proud scars stretching from one end of my breast to the other like little smiles. And in place of my breasts, my beautiful natural breast that, despite their benign appearance, may have tried to kill me, I have silicone implants. They are a little bigger than boobs 1.0, and they are always a few degrees cooler than the rest of my body, but they are very reasonable facsimiles of the originals, and I wear my new breasts with deep pride. But look even deeper, and you’ll see something else: something even more remarkable than the incision lines and the fake rack. I’m at peace. I’m not scared anymore. I don’t have to fear breast cancer anymore. When I stood before you last year, I was positively vibrating with terror. I lived in a thick fog of fear, anxiety, and worry. And it was only after that fog had lifted, after I awoke from surgery and began to heal, that I realized how truly paralyzed I had been.

But, this isn’t just about me. This is about you. And here is why my story matters to you: knowing what I’ve told you, I want you to think about your own families. Do you have multiple female relatives who have developed breast cancer? Two or more women with ovarian cancer? A male relative with breast cancer? If so, these are indications of a possible hereditary pattern. Now, before any of you burst into tears and think, I don’t want to chop off my boobs!, I want to urge you to take a deep breath. The whole purpose of genetic testing (the process by which you determine your risk and whether or not a gene mutation will increase it) isn’t to scare you (nor is that the purpose of my visit tonight). It’s to empower you. Ninety percent of breast cancers just sort of happen, and there is very little one can do to prevent it. But in my case, and in the nearly ten percent of cases of breast cancer that are hereditary, there is something you can do. It doesn’t have to be the same choice I made. But you can be informed, screened, and in control. You can learn your risk of cancer before you get sick and made choices to ensure you never will. Chance are very slim that any of you in this room will ever face what I did. But if you do, I hope you will remember me and see that I made it through the ordeal and am better for it.

When I was a student at NU, breast cancer was the farthest thing from my mind. And in a lot of ways, I hope it's not something that any of you dwell on, either. So take what I say tonight and store it away. Don't let these -- the best years of your life -- be haunted by anything but optimism and hope for the future. And should you ever have to deal with something sinister, reach out and find a community. I wouldn't have made it through what I did without the support, first off, from my husband and my family, but also from the women of FORCE, the women who know what it's like to feel like a mutant, to feel so scared you can't move, and then again to feel so happy you think you might burst. I've been through a lot these last years, but fundamentally I'm still the same. If anything, I value life and the people in it so much more because I know nothing is certain. Facing illness can most certainly be a life-affirming experience.

I know it might sounds crazy, but I consider myself lucky. I’d rather go through what I did –- surgery and reconstruction -– than face months on end of chemo. And I like to be able to look forward to the future without having to worry whether I’ll be around for it. I used to have an 87% lifetime risk of breast cancer. Now I’m free. Thank you so much for having me. I'm happy to answer any questions you might have about my experience or about hereditary cancer.

Wednesday, September 29, 2010

What it means to Previve (Thoughts on National Previvors Day)

What does it mean to previve something? It doesn’t, as many people assume, mean to pre-survive. That’s linguistically impossible. To previve means to survive a predisposition. In other words, to previve is to acknowledge a likelihood and take steps to avoid it. Women who are at high risk for developing breast and ovarian cancers are called previvors, not because we’re pre-surviving cancer, but we are surviving despite a predisposition to developing it. A women who undergoes years of intense surveillance and never develops cancers is a previvor. A woman, who, like me, chooses to have preventative surgery, is a previvor. A man who carries the genetic mutation but never develops any disease is a previvor.

For some, this concept is offensive. They say we’re making a big deal out of nothing. They say that anyone can be considered a previvor of something. For instance, I’m a previvor of the hangover I’m likely to have tomorrow morning or a previvor of the sore knee I’ll have after I hit the treadmill later. But there is a key difference: I can abstain from white wine and avoid a hangover, and I can skip the gym and my knee won’t hurt. But unfortunately, there’s little I can do about my predisposition to breast and ovarian cancer. There is no magic herb, there is no amount of yoga, there is no incantation that I can recite to ensure that, despite my odds, I will be spared.

So I, like many previvors, took measures into my own hands. I had preventative surgery. Which is another controversy. For whatever reason, when it comes to preventative medicine (and prophylactic surgery), people are squeamish. Why remove healthy body parts? Why have surgery before you need to? They forget that this is common practice in other areas of medicine. Wisdom teeth? Dentists recommend they be removed before they cause problems. Suspicious mole? Don’t wait for it to turn into a problem; get it removed. Feeling a cold coming on? Drink OJ. Intellectually, I understand there is a big disconnect between molars and mammaries, but no one would suggest I wait until my mouth is infected to remove my wisdom teeth, so why should I have to wait for cancer to remove my breasts?

Being a previvor means I have a different perspective on things. Being a previvor means I have to confront possibilities and make choices. Being a previvor is hard.

All of these thoughts are occasioned by the calendar. Today is the first ever National Previvors Day. While there are a lot of strong feelings out there about the term “previvor,” in the BRCA community and beyond, I’m very glad to have a day that recognizes me and my particular circumstance. Because, and I’ve argued this from the beginning, it doesn’t so much matter to me what the label is so much as that we have one. Having a BRCA mutation, for better or worse, makes us different – we face increased surveillance, are urged to have parts of our body removed, and must deal with the emotional consequences of making choices based on tolerance for risk and fear of the unknown. We are an odd bunch, and sure, we’ve elected to give ourselves an odd name, but at least we have coherence. The most important step in any movement (and I think the move to designate a National Hereditary Breast and Ovarian Cancer awareness week as well as a National Previvor Day seems to be the first baby steps of a recognition and education drive) is unity. We are something. We are different. We are previvors. Our plight is real. Our choices are hard. But despite this, we persevere. To all my fellow mutants, happy day.

Tuesday, September 28, 2010

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

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.

Friday, September 24, 2010

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.

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.

Monday, July 26, 2010

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.

Friday, July 2, 2010

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.

Monday, June 21, 2010

Holding a Mirror to Myself

It's funny how life has a way of teaching you lessons. Last week, all I could think about was revision surgery; today, I feel much more content.

Over the weekend, I helped friends who own a fair-trade clothing design and import business sell their wares at a street festival on the North Shore. I love working for them for a number of reasons: 1) Their clothes are fabulous (see what I mean?) and, since I get paid for my shifts in clothes and jewelry, today I'm rocking this little number, and 2) Their mission is unimpeachable: they work with democratically structured women's cooperatives in India that provide benefits--including childcare and overtime pay--denied to many in the garment industry. The clothes they produce aren't just stylish and unique, they're helping empower women in impoverished communities; they are beautiful on the outside and on the inside. And I'm proud to watch my friends grow their small, independent, women-owned business. It's an honor to put in a couple shifts a summer, and I look forward to the weekends I can help out.

Saturday was a picture perfect day. A little on the hot side, perhaps, but the sun was bright, and we were busy. I've never had a retail job (does that summer I worked in a coffee shop count?), but I think I'm a natural saleswoman, especially when I believe in what we're selling (and boy, do I ever). I like interacting with the customers, answering their questions, and helping them find something that makes them feel good.

Towards evening, two women--one blond, the other brunette--ducked into the tent (we were selling outdoors, of course). They were probably in their early forties, and the brunette had in tow a young daughter who dozed in her stroller just outside the booth. Not long after they started shopping, they grabbed a few items and hit the dressing room. We were cramped for space and among my many duties--including running credit cards, giving people the wrong copy of their receipt (note to self: we keep the white one), and generally forgetting to keep an accurate track of inventory--was holding the full length mirror (this was a job I was particularly good at). As soon as the brunette came out of the dressing room, I could see it. And my heart leaped to my throat. She'd had breast reconstruction, I was sure. I could see that her left breast was different than her right, I could see the familiar roundness of an implant. I wanted to say something, but what could I say? "Hey, fellow fake boobed lady, I couldn't help but notice..." But I felt an immediate kinship with her, and I wished there was a way to reach out.

What really astounded me, though, watching her watch herself in the mirror, was how happy she was. How pleased she was with her reflection, with how happy she was with the way the clothes fit on her body, even with her imperfect decolletage. She went back into the dressing room and tried on another dress. This time, because of the cut, I was even more sure she'd had reconstruction; her armpit was hollowed out, a telltale sign of a sentinel node biopsy. And then, this time, as she stood before me, in front of the mirror I held, she adjusted her neckline and I saw the scar from her chemo port. She was a breast cancer survivor, I was sure of it.

She smiled so brightly and exuded such joy it nearly took my breath away. There I was, feeling very different about my post-surgery body. I was self conscious and worried that my reconstruction was noticeably imperfect. I worried what people would think if they knew I had implants. I feared people could tell. Here was a woman who didn't care, who didn't apologize, who didn't fiddle with the dress and ask sheepishly, "Can you tell I've had breast reconstruction in this?" She just seemed so very happy to be alive.

It put things into perspective for me. You can own your new body, with its new imperfections, and you don't need to explain it to anyone. You can be wear your scars, your choices, your journey with pride. My friend Cancer Bitch is one-breasted and proudly so. After her cancer, she chose to not to reconstruct. And I'm always astonished when I see her how amazingly confident she is, how it doesn't bother her, so it shouldn't bother you either. I need to see more of that. More women who aren't worried so much about what others think because they are happy with their bodies. I forget to think like that sometimes. But I'm going to try to more.

When I held up that mirror on Saturday, I got a better look at myself. And I'm going to try to learn to love what I see.

Friday, June 18, 2010

Happy half birthday to my new rack

Happy half birthday to my new rack! Six months ago today, I traded in my natural breasts, cancer free though they may have been at the time, for a new set that would never try to kill me.

The first six months haven't been easy. If this were a new relationship -- a new love affair with a new boy -- this is around the time we'd be testing out those three little words, the sweetest of them all. But I can't really look at my breasts and say "I love you" yet. And unlike a new relationship, where it's all acrobatic sex and hopeful fantasies about a life together, it's been a slower courtship for me. And I'm pretty sure these aren't the breasts I'll have for the rest of my life. In fact, I'm pretty sure righty won't live to see her first birthday. (More on that in a moment.)

It took be a long time to even look at my breasts. I mean really look at them. At first, I was so relieved that I'd made it to the other side, I didn't want temper my euphoria by becoming critical of my surgical result. After at all, especially at first, that wasn't the point. For a long time, the girls we bruised, hard, flat, and swollen. I knew they wouldn't be perfect, and until I fully healed, I didn't want to get too nit-picky. But now that things have settled and the swelling has receded (I would say, truthfully, I was swollen -- to varying degrees -- for a good five months), I've been looking closer -- really examining them from all angles (hands up, bent forward, jumping, etc) -- and I can begin to admit I'm not totally happy with what I see.

I've written about it before, and from what Teri tells me, lots of women in the BRCA community have problems with their right breasts (she calls it something not PC which I won't repeat here; suffice it to say our right breasts ride the short bus to school). I surmised it was because the majority of us are right-handed and that side is given less time to heal before we're reaching for things, slinging purses over our shoulder, and picking thing up, than our left. She guessed it might have something to do with blood flow (our hearts being somewhat to the left). In my case, the reason my right breast isn't as full as my left is that simply, the implant doesn't fill the entire pocket left by my mastectomy. It was always the larger of the pair, and now, while the implant fully inflates the runty pocket of lefty, righty is like a saggy balloon, dented on one side. You can see the edges of the implant. I've got a dent on the top of my breast and the inside slope, and the implant sits closer to my armpit. To me, it's very noticeable. And I'm beginning to realize I want to have it fixed.

I've heard stories of women, pre-surgery, ogling other women's breasts. I never really did that. But post-surgery, I can't stop checking out strangers' racks. And when I stare covetously at their natural breasts, I don't envy their size, their bounce, their cleavage. I lust after their slope, the way their chest swells seamlessly into their bosom. I don't have that right now, and I realize I want it back.

It's hard for me to admit I'm considering revision surgery. For one, I feel vain. Part of the mental and emotional preparation for surgery was forgiving myself for seeking elective plastic surgery; in my pre-BRCA life, I never aspired to self-improvement under the knife. I'd never considered paring down my rather substantial schnoz or tapering my beefy inner thighs. And when I first considered reconstruction -- especially implant reconstruction -- I was torn between understanding on one hand that it wasn't about vanity and hating myself on the other for thinking it was. I was having surgery to prevent cancer. It wasn't supposed to be about anything else. And eventually I forgave myself and was able to proceed, knowing I wasn't shallow. I was brave.

But now I realize that, in the post-surgery world, aesthetics matter, and they matter a lot. I've talked time and time again here about the peace of mind that comes with risk-reducing surgery. All those dark shadows of fear that kept my world overcast have dispersed; I'm free to be me again. But while I feel great about my decision to have surgery, and I feel great that I'm no longer burdened by the fear of breast cancer, I don't feel all that great about the result. And I think I need to allow myself to feel great, even if that means having more surgery.

Things have been pretty good since surgery. Mentally, I feel about a thousand pounds lighter (and physically, too, there's less of me to love. My year of stress eating behind me, I've lost about 10 pounds since surgery). I'm running, I'm powerful, I'm capable. But I'm just not comfortable with my right breast. It's a small thing, to be sure, but when you don't have confidence in your appearance, it can be far reaching. I want to live life fully -- as fully as I did before I'd ever heard of a breast cancer gene -- and to do that, I want to feel good about myself physically and emotionally. And, I need to remind myself, I deserve this. There's no point in going through all of this just to withdraw because your relationship to your body has changed for the worse. This is about celebrating life, and I'll be happier when I can look down at my new rack and say with confidence, they're fake and they're spectacular.

A few weeks ago, when visiting my dear friend B in Dallas, I bought a super cute top that just happens to be perilously low cut. I knew I was making a bold purchase, but I thought I was ready let it all hang out there, so to speak. I've worn it a few times, but instead of feeling sexy, empowered, and proud, I worry if I look strange, if I have Tori Spelling chest, if others can tell something isn't quite right with righty. I think I'm going to hang it up for now, not out of defeat, but with the goal that one day, I'll be able to wear that top again with full confidence. And that includes the confidence to allow myself to pursue the tweaks that will make me most happy.

So happy half birthday to my new rack. Not sure how much longer you'll last, but if we go our separate ways, I can assure you, it's not me, it's you.

Tuesday, June 15, 2010

On my soapbox: Support FORCE through Chase's Community Giving Program

It's no exaggeration to say I wouldn't be alive today without a group called FORCE. Ok. That is a bit of an exaggeration, but I've never been one to shy away from hyperbole. The truth is, I wouldn't be sane without FORCE. About three weeks after I learned my BRCA status, in April 2009, I attended my first FORCE meeting at the home of a woman who would become a dear friend. Brain foggy with fear, eyes baggy from lack of sleep, nerves jangly with anxiety, I walked into a room of women who understood exactly what I felt like... and my life was forever changed. A few weeks later, I attended the annual FORCE conference, where I learned more about my risks and what I could do about them; I met more women just like me and learned more about what the road ahead -- from options regarding surveillance and surgery to recovery and reconstruction -- looked like. From the first moment I connected to the organization, I knew I was a part of a community whose support would be vital to me as I made my risk-reducing decisions and beyond. And it has been. I can't imagine having gone through what I did in the last year without FORCE.

Simply put, FORCE provides an indispensable service: it connects women at high-risk for hereditary breast and ovarian cancer in peer support networks and advocates on our behalf. But for me, it's been so much more: a lifeline, a community, an example to aspire to. FORCE is the only cancer charity that focuses exclusively on hereditary cancers, and it's one of the only places where women like me -- previvors, or women who have a high risk for but have not yet developed breast cancer -- have a voice.

I believe FORCE is an organization worth supporting, and luckily, it's pretty easy to do. Chase Community Giving is preparing to donate $5 million to 200 local charities, and if FORCE receives enough votes, it could be awarded anywhere from $20K to $250K. With that money, FORCE could do so much to improve the lives -- and options available to -- women and men affected by hereditary cancer. Casting a vote is easy. Here's how to do it:

If you are on Facebook then it’s very simple to vote. The first thing you do is go here:

The next step is to join the movement by scrolling down just a little bit on the page and clicking the ‘Like’ button.

Next step: Click the big green ‘Search’ button and copy this text: Facing Our Risk of Cancer Empowered and paste it in the box that says ‘Charity Name.’

Click the big blue ‘Search’ button to the right of that.

After you click that, you’ll see Facing Our Risk of Cancer Empowered in blue lettering. Click it.

Scroll down and check the box that says: “Please display my name and profile picture below so this charity knows it can contact me to get more involved.”

Click ‘submit’. A ‘Request for Permission’ box will pop up. Click ‘Allow’.

Vote – and share (and share and share and share again) with your friends, and ask them to share with their friends, and so on. This is the key to getting the word out there, especially as we are only allowed one vote per person per charity.

Here's more information about FORCE and what they'd do with the money if they got it:


• To provide women with resources to determine whether they are at high risk for breast and ovarian cancer due to genetic predisposition, family history, or other factors.
• To provide information about options for managing and living with these risk factors.
• To provide support for women as they pursue these options.
• To provide support for families facing these risks.
• To raise awareness of hereditary breast and ovarian cancer.
• To represent the concerns and interests of our high-risk constituency to the cancer advocacy community, the scientific and medical community, the legislative community, and the general public.
• To promote research specific to hereditary cancer.
• To reduce disparities among under-served populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer.

What would FORCE do with the money if they won?

For starters:
$1,000 delivers the latest in BRCA research and information to 500 families.
$500 gives 60,000 visitors access to their website for one month.
$300 provides a scholarship to FORCE’s annual conference to one person that could not otherwise attend.
$200 provides life-saving information to 100 people through their newsletter.
$100 provides phone-based support and resources via the Helpline for one month.
$50 provides a package of informational brochures to doctor’s offices and hospitals.

Just think, if $2250 can do all of that, a lot more good could come if FORCE places in the top two hundred charities.

Voting on Facebook starts on June 15, 2010 and the lucky 200 winning charities will be announced on July 13, 2010. Please take two minutes out of your day to vote for FORCE. They've made a huge difference in my life; your vote could help them make a difference in the lives of so many others.

Thursday, June 10, 2010

(Don't) Say (Just) Anything, Part II

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.

Friday, June 4, 2010

On the Origin and Nature of Fear

Yesterday, I began reading an advance copy of a new BRCA book that's due out this fall. It's called Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decision and it'll be available in October. But because I'm special (and because of this here blog I gots), I received an ARC (industry shorthand for advanced reading copy, or as we call them at the publshing house where I work, galleys) from Random House and dove right in.

Previvors is part-guidebook, part personal stories. It follows five women who navigate the repercussions of being at high-risk for breast cancer. Three of the five women are BRCA positive; two are not. All five chose the same path to reducing their risk: prophylactic surgery (although several spend years, and in one case, even decades, undergoing surveillance). Their stories supplement the very practical advice and scientifically sound research laid out by the book's author, Dina Roth Port (whom I had the pleasure of meeting at last year's FORCE conference and who is, according to LinkedIn, an alumna of the very same journalism school I attended. Go cats!). So far, I'm enjoying it very much.

(Pause to say I will have a full review of this book when I've finished reading it, and I owe several authors and publishers reviews on other BRCA books I have sitting on my nightstand, which I promise I have not forgotten.)

I'm only about 100 pages in, but something on page 7 gave me pause, and I wanted to explore the issue further here. Chapter two of Previvors is called "Living in Fear," and it contains a number of thought-provoking statements. For instance, Port writes "All diseases are scary, but for some reason breast cancer packs a particular punch. In fact, one survey showed that women fear this illness more than any other, even though cardiovascular disease claims more than ten times as many women's lives each year." This is a statement which with I can completely agree, and I'm sure many of you feel the same way. I spend nary a second thinking about my heart (which I presume, due to my assiduous diet and stringent exercise regimen, to be in tip-top shape), but even before I knew I was high-risk, I knew enough to be scared of breast cancer. Which is what makes the next statement so thought provoking. Roth writes, "Fear of breast cancer don't just appear out of thin air. It stems from a source; there's a definitive point in time when it all begins. For some, that might be something as innocuous as reading a magazine story about a women who battled the disease. For others, it's often watching a loved one actually suffer to the end with it." I read that and thought, huh, where did my fear come from? Where did this fear -- an emotion so strong I decided to preemptively remove the very body parts that may at some point try to harm me -- stem from? The truth is, I'm not exactly sure.

As I've written many times, I did not grow up around breast cancer. It did not affect my life or my perspective of my future health or mortality. My grandmother had it when I was a child, but it was dealt with as a non-event, and she survived for two decades after beating it. (She was not a BRCA carrier; I inherited my mutation from her husband, my grandfather.) I did not learn to fear breast cancer from watching my grandmother. And since the BRCA mutation was passed to me from two generations of men, breast cancer did not manifest itself in anyone else. Therefore, it wasn't by watching anyone suffer that I learned to fear breast cancer. So how did I learn fear?

It could be that I learned to fear breast cancer when, at age 27, I found a lump in my right breast. But I was assured by doctors it was nothing to be concerned about and, indeed, it eventually disappeared as suddenly and mysterious as it had appeared. (I was also told I was too young to have breast cancer and that I should begin routine mammograms at age 40 and simply put the whole event out of my mind. Funny how things can take such a sharp U-turn so quickly...)

In truth, I think I learned to fear breast cancer the minute I learned I was likely to get it. In other words, I wasn't scared of breast cancer until I understood there was a genetic mutation in my bloodline that conferred an astronomical risk of developing the disease. The moment breast cancer ceased being abstract and became concrete, that's when I felt that tightness in my chest, that acidic discomfort in my stomach, that cold sweat on my palms and feet. But to be specific, the fear really kicked into high gear when I got my results of my BRCAnalysis; I have never been more scared of anything in my life.

For some people, learning their risk (which will likely cause fear of the unknown and uncontrollable) when they have lived a life relatively removed from that anxiety is not worth it. So why did I chose to learn my risk and subject myself to a life clouded -- at least temporarily -- by fear and anxiety? I guess the short answer is that in this case, what I didn't know might have hurt me. I could be living a completely different life right now if I hadn't taken that genetic test last April. I'd still have my natural breasts, I'd probably be jogging along the lakefront on this humid evening rather than typing a blog entry, and breast cancer would still just be something that happens to someone else. But that alterna-Steph would still be BRCA positive; the difference is, she wouldn't know. Despite the fear engendered by learning my risk, I'd much rather be safe than sorry.

Fear has been very much on my mind today. I've been exchanging emails with a woman who recently tested positive for the BRCA2 mutation and she's paralyzed by fear. She's scared of surgery and scared of cancer. And it's funny because the advice I gave her is very much coming from someone who is still afraid (or at least aware of the fearfulness that it raises in me) of breast cancer. I told her that cancer is scary, that chemo is scary, that fear of reoccurrance or metastasis is scary. But surgery is not. And yet, long time readers know how scared I was of surgery, how convinced I was I would suffer some unseen complication under anesthesia and never wake up. My fear was specific; I was never scared of pain or what my body would look like after. I was just scared of doing something to ostensibly prolong my life and instead accidentally end it. But that fear was very real to me, just as the fears this woman is experiencing. In my case, my fear of an unknown and unknowable diseases motivated me to make a decision; in other cases, fear can debilitating.

Fear, I think, is inescapable. Whether you've witnessed the ravaging effects of cancer claim a loved one or if you've only experienced it from afar, breast cancer is a terrifying disease. It touches the parts of us that make us women, that make us nurturers, that make us attractive; it's indelibly linked to many aspects of femininity and self-worth. Breast cancer is scary, and no matter how its shadow has darkened your world, no matter the event that triggers it, what we as BRCA mutation carriers must face is scary. Inaction is scary, but action is equally so. Yet we manage our risk in such a way to make fear is manageable. For me, that meant having surgery, despite my fears of anesthesia.

This is a community bonded by fear. And yet, as the women in Roth's book show, we are also a community with a rare choice to escape that fear. I told the woman I exchanged emails with today (and have written here before) that when I had my mastectomy, sure I lost my breasts, but I also had all that fear and anxiety removed too. It's funny; I may not be able to pinpoint the genesis of my fear, but I sure as hell remember when I stopped being scared. That was the moment I woke up from surgery and realized I'd done something irreversible to reduce my risk. And I haven't had a moment of fear since.