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...

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.

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.

A Children's Treasury of Previvor News

In honor of the final days of of Hereditary Breast and Ovarian Cancer Week, a round-up of stories about previvors, BRCA, and HBOC. Happy reading!

Did You Know It’s Hereditary Breast and Ovarian Cancer Week? (Joi Morris on the Ms. blog)

Previvors: Cutting Cancer Off at the Pass (featuring Mayde Weiner, one of the previvors profiled in Dina Roth Port's book, Previvors)

5 Steps to Reducing Your Breast Cancer Risk and Becoming a Previvor (on Glamour's blog)

Breast cancer 'a license to live' for Mississippi woman

Breast cancer previvor: Long Hill, NJ, woman had mastectomies, but never had breast cancer

Diary of My Preventative Double Mastectomy

Prophylactic Mastectomies: The Science and the Personal

Cancer ‘pre-vivor’ says no to lifetime of fear

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.

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.