Goodbye to Boobs

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

2010-12-18T08:38:00.000-08:00

(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.

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

2010-12-13T05:54:00.000-08:00

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.

The Century Club

2010-11-22T19:07:00.000-08:00

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.

Real Housewives of BRCA

2010-11-12T16:51:00.000-08:00

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.)

A letter addressed to my (dearly departed) breasts

2010-11-04T16:02:00.001-07:00

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

2010-10-27T08:09:00.000-07:00

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

2010-10-18T11:04:00.000-07:00

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

2010-10-01T09:28:00.000-07:00

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)

2010-09-29T08:53:00.000-07:00

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

2010-09-28T07:48:00.000-07:00

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

2010-09-24T07:38:00.000-07:00

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

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

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

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

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

The Elephant in the Room

2010-08-25T08:52:00.000-07:00

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

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

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

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

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

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

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

Lessons Learned from Feet

2010-08-24T08:30:00.001-07:00

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

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

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

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

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

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

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

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

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

GoodbyeToBoobs in the news!

2010-08-12T08:16:00.000-07:00

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

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

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

Two Years Ago Today...

2010-07-26T12:16:00.000-07:00

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

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

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

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

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

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

But I Would Run 100 Miles

2010-07-02T10:28:00.001-07:00

(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.

Holding a Mirror to Myself

2010-06-21T13:10:00.001-07:00

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.

Happy half birthday to my new rack

2010-06-18T10:52:00.001-07:00

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.

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

2010-06-15T11:33:00.000-07:00

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: http://apps.facebook.com/chasecommunitygiving

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:

FORCE’s MISSION

• 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.

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

2010-06-10T09:14:00.000-07:00

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.

On the Origin and Nature of Fear

2010-06-04T16:11:00.000-07:00

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.

Making Progress, Setting Goals

2010-06-03T10:42:00.000-07:00

It's hard to believe it's June already. Time truly is elastic. Pretty soon, I'll be celebrating six months since surgery. That time flew by in a blink; on the other hand, the six months prior to surgery were a slow slog through hell.

Despite the length of time that's passed, I'm still healing. Or, perhaps I should say, I'm still making progress. And most of that has to do with learning to trust my body again and being astonished by what it's capable of. For months after surgery, I felt infirmed. I was limited physically. Although I was healthy (and indeed had chosen to have preventative surgery to remain that way), I was -- temporarily -- weakened and compromised by the assault on my body. But as time passed, I slowly began to reclaim my corporal capacities. It started when I got back on the treadmill at the gym. Then, I tried rowing. And gradually, I realized that I was healing and that I was capable of a great deal more than I thought.

But I still was aware for a long time I wasn't yet 100%. Even as recently as six weeks ago, I was more aware of my (supposed) limitations than my (untapped) abilities. When I boarded that plane to Aruba in April, I panicked when it came time to lift my bag into the overhead bin. It was heavy (who knew how much sundresses and sandals could weigh?) and I didn't think I'd have the upper body strength to do it. Luckily, a kind gentleman jumped out of his seat and helped me with my bag (and even retrieved it when we landed) without me having to ask. But last week, on a flight to DC (It was my fourth pre-7 a.m. flight in less than a month. Note to self: stop torturing yourself. You aren't a morning person. And watching the sunrise at O'Hare is no fun.) I didn't even think twice when I went to stow my baggage. I hefted the suitcase up and into the overhead and didn't even think about it until I sat down in my seat (and mercifully had the ENTIRE row to myself) and realized what I had just done. I was back.

I've been feeling pretty powerful lately. A lot of it has to do with the strength I've discovered rowing. Let me tell you: it might look easy, but it ain't. Rowing on the ergometers is challenging in a number of ways: there's the technique, the posture, the monotony. But because we work out as a team, it's impossible to stop while your teammates continue to row; even when you're dog tired and can't imagine another jump, you look to your right and left and see women who've beaten cancer and you know you have to push ahead. If they can do it, so can I. And I have.

I've also been running a lot lately. In fact, I'm probably more dedicated to it than I've ever been before. I've always been athletic, but despite the fact I'm super tall with legs that go on forever, I've never quite figured out how to use them to my best advantage. I was exceedingly mediocre at just about every sport I've ever played, but what I lacked in talent I made up for in sheer will and dedication. I graduated with seven varsity letters and even made the all-state basketball team my senior year (that state being the state of Delaware, so don't get too impressed). But as an adult, I've struggled to reconcile my lack of natural athleticism with my desire to be active, healthy, and fit. I dabble in yoga, love pilates (and if I were a real housewife of New Jersey or wherever, I'd pay big money to have a studio installed in my mansion of conspicuous consumption and hire a live-in trainer), enjoy a bike ride along the lakefront, but I've become, despite my lack of natural grace, a runner (or a person who runs) first and foremost. When I get pedicures, the women always say, "You are a runner." (It's not my lean calves that give me away; it's my gnarled feet.)

And yet, I'm an extremely moody runner (I've written before about my love/hate relationship with the sport here). I abandon the pursuit for weeks -- months -- at a time, go soft, and then start all over again. But not so much recently. There's something I'm getting from running right now that I never have before: a sense of power, accomplishment, potential. Which leads me to my big announcement (well, the big news is that I'm making public a personal challenge, so I have that much more reason to complete: accountability to you all). I've decided to set an ambitious goal for June: I want to run (or walk briskly -- we can't all be superwomen everyday) 100 miles this month. Typing that number makes it seem absurdly small, and I realize dedicated athletes can pound that out in a week. But to me, it's a challenge. That means I've got to run about 25 miles a week, or 5 miles a day (with two days off). But I know I can do it. And I know I'm capable of it.

When I learned I carried the BRCA mutation last year, I felt betrayed by my body. But now that I've taken control of my health, I feel more powerful than ever. See you at the gym!

Thoughts on Privacy

2010-05-24T14:09:00.000-07:00

I've been thinking a lot lately about privacy. And I know I'm not alone. Unless you've been living under a rock -- or just quietly going about your life offline -- you've undoubtedly read about the dust-up created by our robot overlords, er, ahem, I mean Facebook, and their new opt-out-only privacy settings and the cash they're printing selling our personal data -- the things we like and don't like -- to companies who in turn target us with personalized advertisements. The problem with Facebook, so far as I see it, is that we all flocked to it -- after we abandoned the rusting amusement parks of Friendster and MySpace -- because we thought it was a place to share photos and catch up with old friends; we gave freely of our personal data -- joined groups, supported causes, etc -- because we were told our profiles would be protected. But the reality is much more complicated; now our profiles are being commodified and, most troublingly for me, much of our data is now Google-able.

I Googled myself today, and I discovered, much to my horror, a wall post I'd written on a group I belong to on Facebook, which contained a link to this blog, was the second result that appeared when I typed in my name. Now, I'm not so vain as to think that every day, dozens of ex-boyfriends, frenemies, potential employers, and secret admirers, etc are typing my very-hard-to-spell last name into Google and reading through the results. But I'm also not naive enough to think that people don't Google me, especially potential students, editors for whom I freelance, and, yes, potential future employers. And though I am proud of this blog and proud of the decision I made to take control of my health, I do not want the fact I had a double mastectomy and am a breast cancer gene carrier to be the second thing you see when you Google me. Yes, being a BRCA mutant and a card carrying member of the double mastectomy ladies luncheon society is part of who I am; but it's not what I want to define me.

When I saw the search results, I broke out in a cold sweat. I felt outted. I felt naked. And the worst part -- I feel powerless. There's no one to write to to say, "Kind sir, please delete this search result. I'd rather people not know about my boobs." I'm not sure when this happened. I googled myself a few weeks ago and nothing of the sort showed up. So I changed my settings, left a few groups, and well... I can't do much else.

Which leads me to larger, icky, existential questions about how to live in an era of oversharing, still maintain this blog (because I truly believe if I can help just one woman feel less alone and less scared, I've done something right), and preserve a modicum of my privacy. I realize it's a slippery slope; if I was truly interested in privacy, I would never have penned this blog or dreamed of telling my story more publicly. But I did those things on my terms; Facebook outted me on theirs. I'm feeling exposed and vulnerable and, regrettably, let down.

The truth is, the public at large is misinformed about BRCA mutants. As I wrote about in my last post, people can be unkind, judgmental, and, frankly, totally wackadoo in their perceptions and prescriptions. Because I'm not a breast cancer survivor, for whatever reason, my choice to prevent cancer by surgically removing the parts of my body most likely to try to kill me is deemed controversial by some, over-dramatic by others, and, at the very least, questionable by many. And I hate that this information about me -- this choice I made, this journey I've traveled, this genetic imperfection I have -- is now accessible to people who may judge me because of it. I've always thought of this blog as a place to update my friends and family as well as a place to connect to complete strangers; I've never intended this to be a destination for acquaintances, people I know but not well enough to tell them about all of this. And that's who that Google result make me accessible to: the people I don't really care to share this with.

When I first started writing here, I found myself questioning whether writing about my heath -- something so private that there are laws protecting the information I've giving away here for the world to see -- would end up harming me -- in terms of discrimination and judgment. I'd forgotten about that concern in the last few months; after all, I was reaching so many people, and telling my story was therapeutic for me. This blog, this forum, was not harming me at all; it was helping me, as well as others. But now I worry about my privacy again and wonder when the balance tips between help and harm.

Revolt against the brain-dead commenters

2010-05-11T08:40:00.000-07:00

I guess I'm a glutton for punishment. Every time a news story is published about BRCA, I read it thoughtfully, take a deep breath, and then dive into the comments section -- a sinister, murky land filled with ill-informed trolls and their crazy talk. It both breaks my heart and makes me incalculably angry that strangers can be 1) completely insensitive to each other and 2) so thoroughly mistaken about the prescriptives they aver with such surety. The internet is full of cancer denialism, and this is my -- albeit small and meek -- revolt against it. Below, I've copied comments that illustrate my point; then I explain why they are wrong.

Comment: "Cancer is the non stop growth of cells, since they are trapped in the body they just grow in a 'ball shape'. It is believe that its trigger by high levels of stress. or negative feelings towards other people. Energy cannot be destroyed it only transforms, and sometimes transforms into bad things like cancer."

My response: This gem was left in response to an article posted this week about a mother and son, both BRCA2+, who battled breast cancer simultaneously. Though I'm tempted to tear apart the logic, and ridicule the grammar, I'll try to play nice. But this comment illustrates a sentiment that is very prevalent among internet trolls, and that is: IF YOU GET CANCER, IT'S YOUR FAULT. < Pause to compose myself > This is vile and reprehensible BULLSHIT. How can anyone say such a thing, let alone think it? If you have cancer, it's because you are stressed or have negative feelings towards other people. And if only you didn't have stress (who doesn't?) and negative feelings toward other people (oh, like the negative feelings I have towards you, internet commenter?), you wouldn't be sick. Where do people like this get off blaming the victim? Do they have any idea how wrong and insensitive this sentiment is? I'm guessing this commenter wishes to suggest being less stressed and harboring fewer negative feelings will prevent cancer, but that is not only wrongheaded, it's also easily misconstrued as a value judgment on those who already have cancer. And it's despicable.

Comment: "There is too much emphasis put on the BRCA2 gene. My mother had breast cancer, I had breast cancer, and my daughter has breast cancer. We were tested and it is not genetic. Cancer is just a disease that is becoming prevelant in today's society. Anyone, anytime can get it and they don't really know what triggers it. We need to find a cure now!!!!!!!!!!!!!!!!" (comment from the same article as above)

My response: Easy with the exclamation points, hoss. Nothing says take my well thought-out and rational response seriously than sixteen exclamation points. Sarcasm aside, I agree with this commenter that we need to find a cure now. But again, I think there is a major logical flaw in this commenter's argument (if we could be so kind as to elevate it to that level of discourse): my cancer wasn't hereditary, so therefore hereditary cancers aren't important. The truth is, there isn't nearly enough emphasis put on the BRCA gene. More education and outreach -- both in the general population and among medical professionals -- is needed; there is so much ignorance out there about hereditary cancer (not the least of which is the sentiment expressed by dumbass number one up there that cancer is caused by stress, not gene mutations) and more, not less, emphasis needs to be put on it. Secondly, this commenter is wrong that her cancer wasn't genetic; it was. All cancers are genetic. She claims her cancer is not hereditary, and that may indeed be the case. But then again, there could be other genetic mutations not yet discovered that could explain why three generations fell ill to the same diseases. Since hereditary cancers only account for 5-10% of all cancers, it clear something else -- and I'm guessing it's triggered by our environment, what we eat, and how we live -- is at work here. But to discount hereditary cancers because yours isn't is myopic and selfish.

Comment: "That could be a generational curse. They don't have to stop having children in their family, they just have to pray to break the generational curse. With man things are impossible, but with God nothing is impossible. Didn't you see now that they are both cured. God did that." (from the same article)

My response: I'm going to restrain myself here (which is very hard to do) and try to be evenhanded (and not get into a religious debate). But there are a number of things in this comment, especially, that gets my blood boiling. 1) "Generational curse": what the fuck does that mean? And who put it there? 2) "Pray to break the generational curse": um, please show me the evidence that prayer has ever repaired broken genetic code or cured a disease. 3) "They are both cured": did I miss the memo about the discovery of the cure for cancer AGAIN? Man, I'm always the last to hear about this stuff. < end sarcasm > They aren't cured. They have survived. Their disease is in remission, not gone for good. THERE IS NO CURE FOR CANCER. Why do we forget this? 4) "God did that": no, he didn't. Chemo did that. Radiation did that. Surgery did that. Lynda, the mom, did that. Cedric, the son, did that. The doctors who treated them did that. Please give credit to the people who took the actions that lead to the results. I'm stick of strange forces being blamed for causing cancer and sick of strange forces being credited for curing it. No. They took the initiative, they took control. Recognize and respect.

Comment: "Hmm. Profound. My father and grandfather died of kidney cancer, one uncle from brain cancer and another from bone cancer. My grandmother and two great aunts died from alzheimers. My maternal grandfather and his father died of heart disease. Maybe I should have my kidneys, brain, heart and bones removed so I can be sure I will live a very long life. Young miss, look out when you cross the street."

My response: This insensitive dreck was left in response to the amazing Lizzie Stark's Daily Beast essay about her preventative double mastectomy. I almost have nothing to say, since the stupidity of this fecal morsel speaks for itself. But I will say this: The commenter comparing apples to oranges; both Lizzie and I can live happy, productive, and peaceful lives without our breasts, whereas none of us can live without kidneys, brains, heart, and bones (although I'm dubious this guy hasn't already has his brain removed). To compare them (while also conflating the statistical risk of hereditary breast cancer with whatever risk of hereditary heart disease, kidney failure, bone cancer, and Alzheimer) is illogical.

Comment: "This young woman chose to mutilate herself. That was her decision. I personally would never consider such a radical approach. That's me. I would like to think I'm not so afraid of the inevitable - death - that I would start chopping off body parts or quit leaving the house. That's me." (again in response to Lizzie)

My response: First of all, Lizzie did not mutilate herself. Second of all, she never said anything about fearing death (or being an agoraphobe... not sure where that came from). But that's not what bothers me about this comment, or others like it. It's that these people seem to be saying, "Suck it up and get cancer." It's like they are saying, "Sure, you have lots of options at your disposable to avoid it but you shouldn't avail yourself of any of those options." Why? "Because that's not what I would do." Well, I don't mean to speak for Lizzie, so I'll just speak for myself: I don't give a fuck what you would do. And furthermore, suggesting that we shouldn't prevent cancer (and just sit back and wait for it to come) is as deplorable as suggesting we caused our cancers.

< Deep breath > I think I need a drink. It's almost noon. That's cool right? (Oh, a little shout out to all my readers -- and commenters -- who leave thoughtful, conciliatory, and admirative comments: you guys rock. I'm so glad to have your support. Let's hope the trolls never infiltrate this blog!) < Raising a martini glass > To logic, empathy, and kindness.

Boobs in Paradise

2010-04-30T10:52:00.000-07:00

I just got back from a trip to paradise (which explains why this blog has turned into a bit of an abandoned amusement park this month. Here's to cranking up the ol' carousel and calliope one more time). It was my first vacation since my surgery and, in many ways, it was a celebration of a return to normalcy, to health, to happiness. I left G at home this time and set sail with my dear friend N (whose loyalty and companionship I've extolled several times on this blog) for a girls getaway to Aruba. It was a trip designed to commemorate many of my new boobs' firsts: first time on a plane, first time out of the country, first time in a bikini, first time in the ocean. And it was a incredible success: we had restorative, sun-soaked, and booze-filled fun while picking apart (in the way only girls can) the minutiae of life and love. But there is nothing like wearing a bathing suit for a week to put you back in touch with your body. Here are some things I learned about my boobs on vacation:

1) They like to make surprise appearances
I was emailing with another recently reboobed BRCA babe this week (the incredible Lizzie Stark, whose piece in the Daily Beast last week, "Goodbye to My Breasts," engendered comments both clueless and congratulatory) who mentioned her new boobs seem smaller because, as she put it, "the shape of the implant gives me a lot of boob above the nipple." I have the exact opposite problem: my nips are positioned on the top third of implants so that they are always reverently pointing towards the sky. Still, after all these months, I am startled when I look down and see a nip seemingly near enough to poke me in the eye. Because of this, covering them in the bikini I wore, a sort of retro-bandeau halter, proved more difficult that I imagined. N was on constant nip patrol, ready to warn me when the shadow of my areola appeared above the horizon of my top. I gave up a few times, however, especially while snorkeling; I gave the rest of my diving group a free show on more than one occasion, I'm sure.

2) They won't pop while getting a massage
I got my first massage since surgery on the second day of vacation, and I was a little worried that my implants would get in the way/explode/cause my masseuse would run out of the seaside hut screaming in horror. I still have not returned to stomach sleeping yet, so the sensation of laying on my breasts like that on the massage table was odd at first, but I quickly forgot about it (most likely because I was being rubbed with oil and it felt oh so good). And my massuse didn't say a word about my breasts; I'm not even sure she noticed.

3) They don't behave any differently in the water than the old ones did
Much to my disappointment, they are not personal flotation devices. But much to my surprise, they don't feel much different than my old breasts. When G and I were in Costa Rica last summer, I remember floating in the warm Pacific and trying to imprint on my memory the sensation of what my body felt like at that moment, weightless, supported by the buoyant seawater. But what I discovered shortly after sprinting into the ocean about sixty minutes after touching down on the tarmac at Queen Beatrix International Airport is that, when you're floating, you feel nothing. It's like that weightlessness, that numbness that your feel through your entire body when you surrender to the waves, ensconces you. For a moment then, my boobs didn't feel different at all; they felt like the rest of my body, enveloped in warmth.

4) I'm not ready to go topless
Nudity is circumstantial. In the context of my BRCA life, I find myself taking my top off for just about anyone who asks, proudly showing off my new rack. But when it comes to just being nude, not as a woman who's had breast reconstruction but as just a woman, I have discovered I'm a little more shy. The beach where we sunned ourselves all week wasn't exactly topless, but the act tanning your ta-tas was not frowned upon. I fell asleep in the beach chair under the shade of the palapa one afternoon and woke to the sight of a woman laying not ten feet from me defiantly, proudly topless. Whoa, boobs, I though. Real ones. I haven't seen real boobs in ages. All the boobs I see are reconstructed, like mine. I thought about going topless all week, but I found I wasn't ready yet. You see, when I pop my top off for someone to see my new boobs, I'm reinforcing the idea that my breasts are abnormal, that they are something to be inspected and remarked upon, studied and analyzed. And I'm comfortable with that. They are still oddities to me, too, and because of that otherness, I feel comfortable treating them like specimens rather than parts of me. I don't feel normal yet, so the act of doing something natural, like lying topless on a beach, isn't something I can do yet. I was worried about my scars. I was worried about the stares from passing cabana boys. I was not ready for my breasts to just be my breasts. That's a work in progress. I'll get there eventually, and when I do, I'll return to that swath of white sand and say, "World, check these out." But I wasn't ready to that yet, and that's OK.

5) Everything I've been through is worth it if it means I get to go to beautiful places and live a long happy life
Nothing makes me happier than traveling. There is nothing like that first moment when you arrive at a new place and your eyes take in the scene, full of wonderment, knowing that you'll never see things again quite like you see them the first time. I want my life to be full of moments like that, where I go some place new and see new things and get so giddy inside I think I might cry. And that's, in a lot of ways, why I did what I did. Because I want to be healthy. Because I want to live a full life. And I want to see as much of this incredible world as I can. And I know that having significantly reduced my risk of developing breast cancer, I hope to have many years of health, travel, friendship, and awe. I feel so lucky, so incredibly lucky, to have chosen a life less burned by fear, and I plan to make the most of it.

Happy BRCAnniversary to me

2010-04-09T10:07:00.000-07:00

It's usually hard to pinpoint precise moments when your life changes; change tends to happen gradually and is often recognized only after the fact. But on this day, exactly one year ago, my life changed completely. On this day, I learned I was BRCA2+.

But change is a slippery word. I didn't become BRCA2+ a year ago today; I simply became aware I was. I've been BRCA positive since I was born -- heck, even before, when I was just a pile of cells, including my father's copy of his imperfect thirteenth chromosome. But a year ago, I entered a doctor's consultation room a woman, so far as I knew, at average risk for breast cancer and left, about thirty minutes later, someone different, someone who could never unknow what she'd just learned.

For some women, the day they receive their positive BRCA results is just another day; it's just Thursday. They are able to shelve the information, table it for a later date. But my experience wasn't like that. Armed with statistics, numbers, and risk models, I sprang into action. I began planning -- and by planning, I mean accepting -- my mastectomy. From the day I learned I carried the mutation to the day I removed the tissues it was most likely to affect: 7 months, 9 days.

Looking back, after the year I've been through, I often think about that transformative moment. If I had to do it again, would I still do it? Should I have waited? Is ignorance bliss? There is never a good time to learn you carry the breast cancer gene, and it's information not every woman wants to know. But even though the information I learned a year ago today changed my life -- and my body -- I'm still glad I have it.

But in learning I carried the breast cancer gene, I became much more than a woman a high risk for breast cancer. For years I was a writer who never did any writing; a year ago I became a writer for real, not only with a subject but with a voice. And somewhere along the way, I acquired an audience; I now speak not only for (and to) myself but to the women I know read this, to the women who are finding themselves in the same position I found myself a year ago, to the women who might feel alone like I did. Becoming a previvor allowed me to fulfill another passion, and for that I'm grateful. For my audience, I'm humbled.

So much can change in a year. And for me, a lot has. I've got a new identity -- that of previvor, blogger, mastectomy graduate. But those changes have been overwhlemingly positive. I don't have the option of not having the mutation -- that would be fantasy -- so if I have to do this, if this is indeed my fate, I'm proud of how I've handled myself.

To those far along on their journeys or for those just beginning, we are members of a group not one of us would likely want to join, but we're bonded by our experience, our choices, and the tolls they exert on us. Life hasn't always been easy these last twelve months, but I also have a better appreciation for living. After all, I was given a choice to live life on my terms or my genes' terms, and I chose the path that would allow for the most health, the most joy, the most reward. And I have been rewarded: I'm happier than I've ever been and more certain than ever that we can create positive change. None of this would be possible without knowing what I learned a year ago today. Happy BRCAnniversary to me.

The OTHER Surveillance

2010-04-07T12:54:00.000-07:00

Last week, I wrote a couple of posts about what it means to be a young women who has chosen to have a risk-reducing mastectomy and whether or not that makes me "pro-surgery." The conclusion, of course, is that, while I certainly feel that a PBM was the right choice for me, I support all women facing hereditary cancer, no matter how they chose to manage that risk.

But there are two sides to the BRCA coin.

Whereas I chose a preventative mastectomy to manage my breast cancer risk, I'm currently opting for ovarian surveillance. In other words, while it was relatively easy for me to say goodbye to boobs, I'm not yet ready to part with my other lady parts.

This is a factor of my age. At 31, I'm not done having kids yet. That's because at 31, I haven't even started having kids. And, looking at my calendar, unless I get an unexpected urge to reproduce, I'm giving myself a few more years of sleeping late, going out, and spending my disposable income on shoes and vacations and dinners out. In other words, I hope to be a DINK (dual-income, no kids) for a little while longer. But not forever. I think I want kids... (I've never been one of those girls who say, "All my life, all I ever wanted to be was a mom." Spending any time with a baby reminds me how grateful I am I don't have one). But I know, at least, I want the possibility of having them. So I'm going to need my ovaries some day. Just not today.

I plan to keep my ovaries at least until I turn 40. As a BRCA2 mutant, I'm "lucky" (lucky in quotes because ... pshaw ... no one should have to plan when they are going to pull out their ovaries) that I have a less astronomical risk of ovarian cancer (about 1 in 4 vs. 1 in 2 with my BRCA1 counterparts) and, therefore, a little more leeway with how long I can keep my ovaries. (When I was given my positive genetic test results, the doctor told me I should think about an oopherectomy at about 45. That seems to be pushing it a bit, but I'm glad I have the option to stall if I need to.)

To be honest, I'm TERRIFIED of removing my ovaries, far more than I was about removing my breasts. I know this is counter to what many women feel when they get their BRCA results -- for many, an ooph is a no-brainer, whereas the mastectomy is the toughie. (And studies support this. An oopherectomy increases survival rates in BRCA mutation carriers and lowers breast cancer risk, too.) But this is also a factor of age. I got my genetic test results when I was 30; if I was going to do something, it was going to be the mastectomy. (Incidentally, I've noticed a generational divide on this issue. Many young previvors like myself are eager to take some kind of action, and we don't feel as "attached" to our breasts -- especially once we begin to think of them as ticking time bombs -- so they are expendable. As Bright Pink founder Lindsay Avner told CNN in an interview last year, "I mean, after all, what difference does it make? It's just a boob.")

On the other hand, ovaries make a big difference. And their absence has lasting effects on your whole being, body and mind. Aside from instantly losing all the estrogen in your body (which can affect everything from libido to body weight), women in surgical menopause are more prone to cardiovascular disease. But most troubling to me, women who undergo oopherectomies are at elevated risk for memory loss, dementia, and, as this report kindly euphemizes, "cognitive decline." Let me be clear: THIS SCARES ME SO MUCH MORE THAN OVARIAN CANCER EVER COULD. My brain is my most prized possession. I take great care to exercise it. I need it to work, to teach, to write. I am in the midst of what I hope is a long and successful career in academic publishing, and you can't even imagine how heady my work is. If my brain turns to mush, I'm fucked. In other words, it's the side effects of the oopherectomy that have me scared, not the disease it's intended to prevent.

I've been thinking a lot about aging lately. I've been picking grays from the Susan Sontagian-sweep of my crown, I'm spending a small fortune on night creams designed to minimize my crows feet, and I'm slowly beginning to accept I'm not a kid any more (even if I still occasionally act like one). I think there is a lot to look forward to in life, and imagining getting old before my time (and not just physically) scares the crap out of me. Cognitive decline in my early forties does not jive with my definition of quality of life. (Incidentally, I plan to avail myself of any and all hormone replacement therapies. This might alleviate some of the side effects of menopause, but considering I feel like I just got my period, oh, last week, it's still hard to even imagine the M word in my near future.)

It's clear I have not accepted -- at least with the same grace I did my breasts -- that my ovaries will have to go. But I've got some time to get used to the idea.

In the meantime, even though there are no reliable methods of detecting ovarian cancer at an early stage, I'm doing increased surveillance. And I do so with the complete understanding that it's a bit of a charade. Last Wednesday, I saw my ladydoc, who is also a BRCA+ babe, and she wrote me a script for my twice-yearly transvaginal ultrasound and CA-125 blood analysis. These two tests are currently the only screening options available to women at high-risk for ovarian cancer, and they are pretty much medical hocus pocus. And elevated CA-125 score could indicate something amiss, or it could uncover routine fluctuations in your hormones. Ultrasounds only detect things big enough to see, which is usually when things are already in the shitter.

But, I play along. I like sleight of hand tricks. I like smoke and mirrors.

As I laid, legs splayed, feet in stirrups, and watched as my insides were projected on a high-definition television screen above my head, I wasn't scared; I was skeptical. What are those undulating masses on the screen? And how can anyone discern anything from that grainy picture? My doctor assured me my ovaries were "lovely." I just saw static on the screen, but, hey, if you say so. I had my blood drawn for the CA-125; again, I wasn't scared. I was resigned. Resigned to play along. Resigned to wait for something better. My score was a 7. I'm -- so far as any one knows -- in the clear.

So this is my life with my ovaries. An oopherectomy at 31 is not the right choice for me. It may be for someone else, and I support that decision, as long as it's been reached with an understanding of all its consequences. But I guess in the end, I'm not for or against anything. I'm just trying to find my way through this mess, just like everyone else.

You Don't Own Me Anymore, Myriad!

2010-03-30T11:03:00.000-07:00

I know I've been blogging a lot recently, but there's been a lot of BRCA news to report on. Last night, a story equivalent to the Pitt-Aniston divorce rocked the genetics world, and I'd be remiss not to mention it today...

When I was tested for the BRCA mutation, and my results came back positive, I was not able to get a second opinion. That's because, in the U.S., only one company offers the test: Myriad Genetics, based in Salt Lake City. Myriad has patented the BRCA1 and BRCA2 genes, and these patents gave Myriad a monopoly on testing for deleterious mutations in these genes. In the absence of competition, the company charged $3000 for screening tests -- a expense that put this test far outside the reach of many men and women who could have benefited from the results.

But all that changed yesterday.

A federal court nullified Myriad's patents. Last May, the American Civil Liberties Union and the Public Patent Foundation filed suit against Myriad, charging their patent on the BRCA genes was unconstitutional. (I wrote about the lawsuit back in May 2009.) And yesterday, a federal judge agreed. The whole 152-page ruling can be found here, and here are links to analysis of the decision written by people with a more complete understanding of patent law, intellectual property, biology, and genomics than I have:

New York Times: Judge Invalidates Human Gene Patent

Wired: Judge Nullifies Gene Patents

NPR: Federal Judge Rules Against Patents On Human Genes

Newsweek: In Surprise Ruling, Court Declares Two Gene Patents Invalid

Los Angeles Times: Breast cancer genes can't be patented, federal court rules

I say this is the equivalent of an unexpected high-profile celebrity divorce in the BRCA world because this ruling -- if it stands, and it looks like it will be appealed -- will CHANGE EVERYTHING about the way men and women learn about their BRCA status. It is likely that the test will now become more widely available, which will drive the cost down. Which is, of course, a wonderful thing. But I wonder about the other not-so-beneficial consequences (and please don't accuse me of suffering from Stockholm Syndrome, in which I grow attached and sympathetic to my kidnapper). Will the quality of testing go down? And will the test be made available to people who don't need it? Myriad has already begun airing direct-to-consumer advertising in the selected regions; the spots use that tried-and-true formula common to many pharmaceutical ads -- "Ask your doctor if you are at risk for high blood pressure and see if Lipitor is right for you" -- and turn it on its head -- "Be ready against cancer." The problem is that this kind of advertising discourages genetic counseling, since the blood draw can be handled by your primary care physician. But genetic counseling is ESSENTIAL to anyone seeking to understand their genetic predisposition to disease; a Myriad-sponsored pep talk by your PCP will not prepare you for the impact of a positive result.

(In fact, true story: when I originally learned there was a genetic mutation in my family, I went to my PCP to discuss how to proceed. She basically brushed me off, said she didn't know much about it except that it was exceedingly rare, and that I shouldn't worry too much about it. Fast forward to December 2009. I'm in her office for presurgery testing. She tells me she thinks I'm brave and that I'm the only person in her practice to be a BRCA mutation carrier. But what do I spy on the shelf behand me as she swabs my nostrils for the MSRA screening? A stack of testing kits from Myriad. This woman who knew nothing about the BRCA gene is now offering to test for it. I shudder to think the damage receiving positive results from someone like her would inflict on a women at such a vulnerable moment.)

But perhaps I'm conflating two different problems. Perhaps quashing the Myriad monopoly will cause direct-to-consumer marketing to cease. And I'm certainly not saying Myriad should be able to patent our genes. I applaud the ruling. It's really an incredible breakthrough. But I'm not completely clear on what effect -- though I know it will be cataclysmic -- the judgment will have on the way Americans receive their genetic test results. And, of course, this case will change the way all genes -- not just those associated with breast and ovarian cancer -- are patented (and about 20% of genes have been patented). So this case is incredibly important. And it's definitely a step in the right direction. Hopefully this will open avenues for further research on the gene and spur advancement in treatment and prevention of hereditary cancers. I just hope we get all of the good without any of the bad.

Extra! Extra! Studies Suggest Surgery Not Always the Best Option, Young Boobless Woman Thinks She May Need to Lay Off the Studies

2010-03-29T20:51:00.000-07:00

In my last post, in which I discussed new studies that show surveillance and surgery yield pretty much the same survival rates, I wrote, in reference to a trend piece in the NYT which reported more (non-BRCA) women are choosing bilateral mastectomies: "the benefits of bilateral mastectomy for us mutants are well documented." Well, a new study that's attracting a fair amount of attention this week suggests otherwise.

The headline over at MSNBC reads: "Losing breast little help after cancer." The article goes on to say:

Researchers said that in women with breast cancer who also have genetic mutations that make them more susceptible to the disease, women appear to live just as long whether they choose treatment that preserves their breast or have a breast removal, or mastectomy.

...

Dr. Lori Pierce, a professor of radiation oncology at the University of Michigan, and her colleagues observed 655 breast cancer patients in Australia, Israel, Spain and the United States, all of whom had genetic mutations that gave them a much higher chance of getting the disease. After 15 years, women who had a breast removed had about a 6 percent chance of a cancer relapse, compared with 24 percent of women who kept their breasts. If the latter group added chemotherapy, their risk dropped to about 12 percent.

But when it came to survival, there was almost no difference whether the cancer patients had decided to keep their breast or have it removed. Women who kept their breasts had a survival rate of 87 percent after 15 years, and women who had mastectomies had a survival rate of 89 percent.

The implication is that, even if 1 in 4 women who chose to conserve their breast (or 1 in 8 who chose chemo) experience a relapse, they don't die of it. So, all things considered, even in us mutants, a lumpectomy and chemo is as effective as mastectomy. Surgery, the research suggests, isn't always the best option.

This study arrives at an interesting moment. There has been fascinating discussion on several of the BRCA blogs I follow about our previvor community and its seemingly pro-surgery/anti-surveillance tilt. As the blogger who writes "The Secret Life of a BRCA1 Mutant" commented on my last post: "I really feel like the general public says that surgery is crazy, and the BRCA community says that surveillance is crazy, which puts women in a situation to be criticized whatever they do." And Dee, with her admirable wit and cynicism, wrote on her blog: "I firmly believe, and I will go on believing, that it isn't "crazy" or "irrational" to reject prophylactic surgery in favor of screening....[O]n a philosophical level, I don't want to get to a place where we, as a community of mutant previvors, as it were, accept prophylactic surgery as the "solution" to the BRCA conundrum. " (And this is coming from a woman who's a veteran of the ol' boob chop chop and the nether ladypart removal.) Today, Teri even pondered her pro-surgery stance in a thoughtful blog post: "It may seem to the casual observer that I’m pro-surgery, since I have had a preventative hysterectomy & oopherectomy and a preventative double mastectomy, since learning of my high ovarian and breast cancer risk. Does that make me anti-surveillance? In a way, yes, it does, FOR ME, for my own circumstances – based on my age, my viewpoints, where I stand in life, things I’ve learned about BRCA related cancer and my tendencies to over-think, over-analyze and worry constantly. Do I think increased surveillance is a viable option for other BRCA mutants? Yes I do."

All of this chatter in the blogosphere and the critical mass of studies has me wondering about my own position. Am I pro-surgery? I suppose, by nature of the fact that I've had it, I am. Am I anti-surveillance? Absolutely not. In fact, I admire women who are brave enough to go that route. Surveillance, in many ways, simply wasn't an option for me. I suffer from an anxiety disorder, and I couldn't subject myself a lifetime of quarterly testing and waiting and the crushing fear and panic that attend it. I think surveillance is a fantastic option for the right kind of person. I'm just not the right person.

Which leads me to why I started this blog. When I first learned there was a BRCA mutation in my family and my cousin, 26 at the time, had tested positive for it and was pursuing mastectomies, I thought she was nuts. Cut off your healthy breasts? You've got to be kidding me! Disfigure your body? No thank you! It turns out, six months later, I'd be in a position to make a similar choice. And when it came time to decide what to do -- when it was my body and my future -- her choice didn't seem so radical after all; in fact, it made a lot of sense. But when I began to consider surgery, my cousin M was the only person I knew going down that road. I didn't realize there were support organizations. I didn't know there'd been books written. I felt pretty alone. But I also knew I could be an example. So I started writing here, and I chose to write about surgery because that was my choice, and I hoped my journey and experience could bring solace to others in my position. I've been honest all the way through: I've written about my ambivalence, my fear, my lows, and my highs. But my journey is whole (though still not complete ... I still have a few more years with my overalls before they get the yank) and this blog represents my experience with testing, getting my results, dabbling in surveillance, choosing surgery, having surgery, recovering from surgery, and thriving after surgery. So is this a pro-surgery blog? No. This blog is my story, and I chose surgery. But if I'm not pro-surgery, I'm simply anti-being scared of it. I'd like not to encourage surgery so much as assure you that if that's the road you chose, it's not as bad as you think. If I'm the worst case scenario (a fake-boobed 31 year old), I'm doing OK. And I think that's something that needs to be said. Yes our choices are shitty. Yes surgery is serious. But, if you choose surgery, it doesn't have to be a dark moment; it can be a positive experience.

Surgery isn't the only answer, and research is making the compelling case that there are other equally "good" options (good is in quotation marks because we're talking cancer and treatment here, so none of this is actually good). Sure, some of these studies make me pause and wonder if I've made the right choice. But that's part of the journey, too. Just because I have pretty round fake boobs doesn't mean I wouldn't rather have my old ones back. And I'll probably always miss them and wish there was some way for me to have kept them. But, for me, there wasn't an option. And so I write what I know -- and I hope I don't put any one off who's considering surveillance. I just write the blog I wish I could have read when I first embarked on this expedition into terra incognita. My greatest hope is that my experience can be someone else's map.

Beyond Survival

2010-03-25T09:46:00.000-07:00

On Monday night, I spoke on a panel at an event for women at high risk for breast and ovarian cancer. During the discussion that followed, a certified genetic counselor made a startling claim: she said survival rates for women with BRCA mutations are pretty much the same (in the 90-95% range) whether you chose surgery or surveillance. Upon hearing this, my first thought was to slap my forehead and reprimand myself for making such a stupid stupid stupid choice to remove my breasts. But then I though about it a second and realized I'd still made the right decision. Why? Because survival rates are very different than not-getting-cancer rates. And that's a key difference. I've noticed this fundamental disconnect in a lot of studies and discussion recently, and I think it's worth looking at closer.

First, about that claim. This was the study she was getting her data from. The salient findings are this:

For those BRCA1+
- With no intervention, survival probability by age 70 is 53%
- The most effective single intervention for BRCA1 mutation carriers is prophylactic oopherectomy at age 40, yielding a 15% absolute survival gain
- The combination of prophylactic mastectomy and prophylactic oopherectomy at age 40 improves survival more than any single intervention, yielding 24% survival gain

For those BRCA2+
- With no intervention, survival probability by age 70 is 71%
- The most effective single intervention is prophylactic mastectomy, yielding a 7% survival gain if performed at age 40 years.
- The combination of prophylactic mastectomy and prophylactic oopherectomy at age 40 improves survival more than any single intervention, yielding 11% survival gain

For both
- Prophylactic mastectomy at age 25 instead of age 40 offers minimal incremental benefit (1% to 2%)
- Substituting screening for prophylactic mastectomy yields a similarly minimal decrement in survival (2% to 3%)

Their conclusion was this: "Although prophylactic mastectomy at age 25 plus prophylactic oopherectomy at age 40 years maximizes survival probability, substituting mammography plus MRI screening for PM seems to offer comparable survival."

So that's where she's getting this idea that survival rates are similar. But in order for that to be true, women still need to have an oopherectomy at age 40. So, it's misleading to say no surgery is required because in order to have at least a 90% chance of making it to 70, your ovaries have got to go.

But, if it is true that you can survive until 70 even if you keep your breasts, why am I still sure I've made the right choice (at least for myself)? Because, again, the study doesn't consider the likelihood of getting cancer -- just our likelihood of surviving it. Which is a big difference. Most of the time, having cancer means time-consuming, treacherous treatment. (Recently, however, I've met two young BRCA+ mutation carriers who were diagnosed with DCIS -- essentially stage 0 breast cancer -- through close surveillance, and they did not require chemotherapy. They both, however, chose double mastectomies after their cancer diagnosis. These are cases of close surveillance working; there are many other stories I've heard about women whose cancers were missed, despite assiduous screening.) In most cases, cancer disrupts your life and can have profound effects on career, relationships, and self image. And that's what bothers me about these cold, statistical models (the study I've been discussing is a decision analysis study rather than one based on empiric data): it doesn't take into account issues like quality of life. Sure, from a purely mathematical perspective, I have as much likelihood as someone diagnosed with early stage breast cancer as making it to 70, but will our quality of lives be similar? It's an important question, especially given that the event I spoke at (and where this information was discussed) was called "Survive and Thrive." It's not just about evading death. It's about enjoying life. And I know I'll enjoy mine a lot more knowing that I won't have to face breast cancer.

This issue came up in a different way over on the Well blog of the New York Times. Tara Parker-Pope recently wrote about the trend among women diagnosed with breast cancer to remove both breasts, despite the fact that "cutting off a healthy breast does not improve the odds of survival." (Those are TPP's words, and I'm leaving them as such, because certain people complained that the phrase "cutting off a healthy breast" was misleading, conveying a draconian technique that in no way resembles modern mastectomy and reconstruction. I don't have a problem with the phrase; I write all the time here about chopping and cutting and hacking and everything else.) She writes:

The percentage of women asking to remove both breasts after a cancer diagnosis has more than doubled in recent years. Over all, about 6 percent of women undergoing surgery for breast cancer in 2006 opted for the procedure, formally known as contralateral prophylactic mastectomy. Among women in their 40s who underwent breast cancer surgery, one in 10 opted to have both breasts removed, according to a University of Minnesota study presented last week in St. Louis at the annual meeting of the Society of Surgical Oncology.

So, if it doesn't add any benefit, why are women removing healthy breasts? (It should be noted here that the women discussed in this article are assumed to be non-mutation carriers; benefits of bilateral mastectomy for us mutants are well documented.) Do these women just want to drive up premiums for the rest of us (which was suggested, naturally, by the very sensitive comment trolls that crawl out from under their bridges to make unsubstantiated claims and accusations)? Are they crazy? No. They just don't want to worry about breast cancer. They don't care that it may not improve long term survival rates because they know it definitely does improve long term peace of mind.

And this is something I can relate to. These women felt betrayed by their breasts and opted to remove them altogether; when they got cancer in one breast, both were, pardon the pun, dead to them. And I felt the same way. When I learned I carried the mutation, my breasts ceased being decorative sex organs and became time bombs. I knew I'd rather remove them before I got cancer rather than wait around to remove them after. And I don't think you can quantify that. I feel my quality of life has improved dramatically even since my mastectomy. (I wrote about being happy here.) When I first learned I was a mutation carrier, I heard a medical profession describe BRCA previvors as the equivalent of cancer survivors in remission: both groups of women spend their lives in fear of the cancer either returning or finally catching up to them in the first place. That stuck with me, and it confirmed that surgery was the right choice because I no longer have to crouch in perpetual horror, waiting for their other metaphorical shoe to drop. I'm not sure you can convey that in a statistic. That's why our personal stories and our choices are so important to share.

Happiness

2010-03-17T09:08:00.000-07:00

On the way into the office this morning, I saw tulip blossoms (pictured above) poking through the dark ground and I almost cried -- it was just so beautiful. Spring! New life! Rebirth! And it's an apt metaphor for what I've been feeling lately: contentedness, optimism, peace.

Tomorrow marks the one-year anniversary of this blog, and it's dizzying to consider all the changes that have happened in the last twelve months. When I started writing here, I was terrified; I hadn't even tested positive for the gene mutation yet, but I was so scared and so alone that I needed to create a forum in which I could express myself. A year later, while I still love writing here (and reading your comments, which I'm a little sad to see have petered off recently. I miss you guys! Say hi to me!), I'm in a totally different emotional state: I'm happy, sometimes deliriously so.

If spring is a rebirth, the winter -- and its gray weather and leafless trees -- is a kind of death. If I'm now reborn, it follows that I was a little unanimated before. And I realize with the benefit of hindsight, that, if I wasn't quite dead before my surgery, I was deadened: my joy was tempered, my optimism was muffled, my anxiety piloted me. And now, after surgery, I'm alive, more so than I've been in a long time.

The last time I wrote about my post-mastectomy emotions, I talked about my post-surgery blues. But equally important, and to my mind more astonishing, is the phase I find myself in now: unadulterated glee. I was down for only about the first two weeks after surgery; once my drains came out and my house guests left, I began to feel more like myself and less like a patient. But the real return -- or perhaps the ascent -- to happiness began shortly after I returned to work. The most mundane things -- the way the sun shone through the window of the southbound el train as I headed to the office, the simple pleasure of doing my makeup and blow drying my hair, bundling up and braving the Chicago cold -- suddenly seemed new and beautiful; the normalcy of a simple life no longer clouded by the fear of cancer was blindingly bright. And it wasn't just being back at work where I felt different; at home, my laptop lay clamped shut rather than propped open, forever searching the internet for information about breast cancer. I began baking and cooking -- domestic activities I was never known for -- and found immense joy in creating and nourishing. I found myself with so much free brain space: the part of my mind that was clogged with fear and worry had been cleared, and now it is filled with a sense of empowerment. And this feeling of accomplishment has turned into happiness.

After surgery, I feel I can do anything. I can take on any challenge. I can climb mountains. My BRCA year was life-altering and life-sucking, and now that I have recaptured the elan, there is nothing that is too hard. Which leads me to my next point. Before BRCA, the initials that ruled my life were OCD: I presented with symptoms during puberty and have struggled my whole adult life to control the intrusive thoughts and compulsive behavior. This is real OCD, not just oh-yeah-I-like-my-shoes-lined-up-neat-too kind: every second of every day I struggle with irrational thinking and palliative rituals. It's a hellish disorder, but I decided a long time ago I wouldn't be held prisoner by it. And it's a testament that many of my friends and acquaintances don't know this secret shame: I work really hard to control my behavior so that I'm not stigmatized as that nutjob girl.

But I've also spent most of my adult life medicated. I long considered OCD a chronic condition that, like, say, diabetes, required constant medication; my SSRI was like insulin. I had been wanting for a while to switch up medications; the pill I took was notorious for being particularly side-effect laden and difficult to wean from. But in my BRCA year, with so many changes afoot, I thought it would be prudent to wait. But after surgery, I felt strong enough to try something new; after all, I felt I'd be given a new lease on life and I had a check-list full of things I was anxious to start working on. So in February, I spoke to my doctor about trying something new; she devised a plan by which I would gradually taper off the old drug and get onto the new one. But something happened halfway through the weaning: I realized I wanted to make a go of it without medicine. I had heard such nightmarish stories about the withdraw symptoms that I worried whether I'd be strong enough to get through it. But I discovered, not only was it not as bad as I thought it would be, I didn't feel all that different. So when I got to the end of my weaning period, I stopped. No more pills. And it's been wonderful. I don't feel all that different, to be honest. Sure, I still have symptoms of OCD, but no more than I did when I was supposedly controlling them with medication. It's been about a month, and I feel great: I can access my emotions -- both sadness and happiness -- more readily and I feel things more acutely, but this is what I want: no buffer, just life. It's like my mind has been reborn, or at least reawakened.

I'm a big believer of better living through chemistry, and I think medication can do a lot for a lot of people. And I'm not writing off the possibility that one day I might once again set sail on the S.S. SSRI. But right now, I'm seeing what life is like through these eyes. And so far, everything I see is beautiful. It's spring and I have new boobs and a clear mind: I'm reborn and I'm happy.

Recovery on Water

2010-03-12T09:16:00.000-08:00

My friend Cancer Bitch suggested last year that I join a group called Recovery on Water, a rowing team for cancer survivors. I was intrigued (having grown up on the bougie I-95 corridor, crew was very big, though I was too busy playing equally bougie sports like filed hockey and lacrosse to ever learn to row), but at the time she suggested this, all I could think about was my upcoming surgery, and I promptly put it out of my mind. Persistent bitch she is, she invited me recently to attend the group's open house, which I did on Sunday.

I was a bit skeptical, I must admit, not the least because ROW is a group for cancer survivors, which is most certainly something I'm not. Would I feel like an impostor? A wolf in sheep's clothing? Does my trauma -- my voluntary removal of my breasts -- qualify me to join this group of women who've collectively beaten cancer? Will they be mad at me I got the chance not to get cancer? Will I know the secret handshake? (This is hardly the first time I've considered my identity as a previvor and wondered if I'm somehow less than a survivor. You can read more about my concerns here and here.) Turns out I'm not the first previvor on the team (B, who also works at UofC, and I met last summer and are going to carpool to practice on Thursdays), but I'm definitely the exception rather than the rule.

Despite my concerns, I felt I belonged. Here was a group of women brought together by cancer. And whether we had it or only had the extreme likelihood of getting it, we're bonded by this disease. Sure, I never had breast cancer, but it still changed my life. I met some amazing women: a young mother in her early forties whose breast cancer has metastasized to her lungs, a twenty-something who is battling uterine cancer (likely caused by Tamoxifen, the chemoprevention drug she was prescribed after her first bout with breast cancer), an older woman wearing a lymphedema sleeve. And though I felt a little unworthy in their presence -- after all, they had been through so much and all I did was have my breasts removed -- I still felt bonded to them; their fate could have been my fate. I can't castigate myself for not having had the experience of cancer; I had the experience of not having cancer, and that's not necessarily nothing.

I was also dubious about physical act of rowing. After all, how do you get a bunch of ladies who've had their chests biopsied, radiated, operated upon, and/or reconstructed to propel a boat? Next week will mark three months since my surgery, and my first thought, defeatist though it might be, was "I can't do that! My new boobs! My fragile, fragile new boobs! Won't someone please think of my boobs!" But that's exactly where the empowerment comes from. This isn't your average let's talk about your feelings cancer support group -- there are no gently titled heads, pursed lips of concern and empathy, hands on neighbor's knees. We row even if -- and maybe because -- we think we can't. We've had our bodies betray us, and rowing helps us take the power back. Plus, once I saw women three decades my senior on the ergometers, I knew I had to try.

We had a rowing machine in our house growing up (right next to the Nordic Trek that became a clothes rack and the treadmill I was the only person to ever use), and it turns out I had been doing it wrong all these years. There's a movement to it -- a lean back, a lean forward, a knee bend, and push -- that I'd been doing in the wrong order. But nevertheless, when I stepped onto the machine, I discovered most of the power comes from your legs, not from your chest or arms. And after a minute or two, I forgot about my fragile fake boobs. I had so much fun and felt so welcomed, I knew this was something I wanted to try.

Last night, I attended my first practice. The group meets in raw space (it's not pretty -- it looks more like a building that's about to be rehabbed than an abandoned warehouse, but it's covered in dust and filled with construction materials) in the West Loop; it's jarring to see two dozen ergometers, several Nautilus machines, and racks of free weights in this otherwise unfinished building. It looks like health fanatics are squatting there. (In actuality, the space belongs to the crew team of a local high school who allows ROW to use it for free, and since free is the key word, no complaints here.) I left sweaty and covered in construction dust. (Note to self: bring a towel next time).

I also got my ass handed to me by women much older than me. I confess I thought, even after the open house (during which women sort of casually floated back and forth on the ergometers, and the whoosh of the fan was only quiet background noise), that this would be gentle; after all, we're former cancer patients, right? Wrong. It was hard core. This did not look like a group of women who'd been to hell and back. I even forgot for a moment that we were all here because of cancer until I looked over during our ab circuit and saw the concave chest of the woman lying next to me. I made it through the workout but was humbled to recognize I'm going to have to practice and commit to this if I want to be as good as some of the ladies who've been way sicker than me. And I'm up for the challenge. It's a great workout. Today I feel tight but not sore, and my abs, which have lain dormant for lo these many months, tingle as if to remind me, we're still here.

But the real appeal is still, of course, the women. I rowed next to Cancer Bitch, and between pulls, we gossiped about publishing (I'm a book publicist and she's a writer, so we know a lot of the same people), cancer memoirs (she wrote one, I'm working on something in the same vein but a little different here), and other scholarly topics. After practice I introduced myself to a young women whose rowing technique I admired. She asked if my short curly 'do was my "chemo hair" (when her hair grew back after treatment, it came back curly) and I explained that I hadn't been through chemo but had just recovered from a preventative mastectomy, and she seemed to accept and admire my choice. I told her I wanted to learn more about rowing from her, but I also want to get to know her story, her struggle, her triumph. There is so much I can learn from these women, and I hope they can learn from me, too.

In the afterglow today, all I can think is of the silver linings. I'm coming up on my one-year anniversary of learning my BRCA status, and I'm a different person, physically and emotionally. I'm also truly lucky to have met so many wonderful new friends and been exposed to so many new opportunities and adventures. When I began this journey, I thought I was all alone, and now, literally, I'm part of a team. Never thought I'd take up rowing, but I've done lots of things in these last twelve months I never thought I'd do, and this seems like one of the better options I've been given. Give up your tits, join a team. Sign me up. I'm hooked already.

If I Only Knew Then What I Know Now

2010-03-10T12:58:00.000-08:00

If I do say so myself, I have a knack for proposing -- and then fulfilling -- new year's resolutions. Several years ago, I resolved to accessorize better, and today I'm proud that I'm known for my eclectic jewelry, scarves, and shoes. This year, coming off the high of surgery (and drugs), I made three resolutions. First, I resolved to wear lipstick. Result: I now wear lipstick. Second, I resolved to prepare dinner for and eat with my husband at my dining room table in my dining room at least two nights a week. This is now one of our favorite new traditions (and I've discovered, after years of misplaced feminist pride, that I'm actually quite capable in the kitchen; moreover, I enjoy it).

The third resolution was a bit trickier: eat more Ethiopian food. Now, some background. My freshman year of college, I met a woman who would become one of my most cherished friends, and our deep bond was formed over platters of watt and injera at a little hole in the wall restaurant in Lakeview. But we didn't go there for the food. We were 18, and they didn't card us. So we would sit for HOURS, smoking cigarettes until the ashtray overflowed, drinking carafes of their house red. These marathon wine drinking sessions led inevitably to complete inebriation, and frequently, illness. I got sick so many times that I learned to (mis)associate Ethiopian food with vomit, and after college, I swore it off entirely. But now that G an I have purchased a condo on a street celebrated for its Ethiopian restaurants, I knew I needed to relearn to eat the cuisine.

Last Friday, I satisfied resolution number three: I ate Ethiopian food and LOVED it (it's amazing how much better food tastes a) when you haven't smoked a pack of cigarettes while consuming it, and b) when it doesn't hit a belly full of cheap table wine). But I didn't accomplish this task on my own, oh no. I must publicly thank our friends R and her lovely husband D, who did the ordering (I loved everything they picked) and coached and cheered me as I, tentatively, scooped up the watt with the injera and swallowed.

R is having surgery in two weeks. Like any woman facing a mastectomy, she is nervous, but she also seems really ready. R's experience with cancer is much different than mine, and she has lived more than half of her life with the knowledge that she, like her mother (who is now battling another recurrence of ovarian cancer) would one day get breast cancer. But now, she won't have to. And I think that's both thrilling and scary, because, like we discussed at dinner, surgery isn't just about the physical act of cutting and reconstructing body parts; it's about the reshaping of identities, too. R is also the first BRCA friend to have surgery since my recovery and, not that I'm some expert or anything (I'm just a lady with a fake pair of knockers and a blog), I thought I would put together this list; it's half advice/half opinion. But its whole intention is just to make this clear: R, you are going to rock this. I'm so glad we've become friends; thanks for helping me with my new year's resolution.

From One Fake-Boobed Lady to Another Who's About to Be: Some Things I Learned, in no particular order.

1) Hoodies are your best friend.
Fashion be damned, zip-up clothing will be your uniform for the first week (or more) after surgery. I would recommend anything with a zipper over anything with buttons because, even though this sounds silly, buttons are hard when you are on drugs. Hoodies also solve another problem: hair. Chances are, you aren't going to be in any mood to style your hair (it's a victory if you can even reach your arms up to wash it), so just pop the hood and you are cocooned in a protective hipster shell.

2) Drains Suck
I don't have anything more to say about this. And I think you are anticipating their suckage. But this is just to say, when you are frustrated and grossed out and you say out loud, "This sucks!" I hear you, sister.

3) Get Thee One of These

Order this now. It will easily be the best $60 you spend. As a stomach sleeper, I struggled for the first week to find a comfortable position in bed. I required muscle relaxers for the cramps in my neck that were (seriously) more painful than the soreness in my chest. I feared getting into and out of bed because it hurt so much. And then I ordered this thing. The clouds parted, the sun shone, and a seraphim sang. My life changed for the better. Seriously, don't go into surgery without one.

4) It's OK To Be Scared
Even in the last week before surgery, I held my head high and bravely put one foot in front of the other. I thought I was doing a good job managing my anxiety; friends would comment how calm I seemed. But the truth was I was terrified, and I didn't realize how heavy the burden of that fear was until I woke up from surgery and burst into tears. Of relief. But even though we are super women, it's OK to be scared. If we weren't, we'd probably be in denial. Yes, the other side seems so unknown, but as a permanent resident of the over-the-rainbow club, I'm telling you, there's nothing to be scared of over here. (And we're excited for you to join us!)

5) It's OK to Be Sad
I wrote about my post mastectomy blues here, and I was so heartened to read so many messages of support and solidarity in the comments. What I said then I still beleieve now: we spend so much time being bad-asses (warriors in the face of cancer, fearless ladies who will give up their breasts to gain more control of their health) that when we want to cry, we look over our shoulder to make sure no one's watching. But go ahead and cry. It's sad what we have to do. And if anyone sees your tears, I bet they'll understand.

6) I Endorse This Bra

They sell them at Nordstrom and, while they aren't exactly giving them away, they are a great investment. I still wear mine nearly 24/7. (Another hint, buy them in a couple of sizes because it's hard to know what size you'll be after surgery. Return the ones that don't fit. And keep in mind you'll be swollen for a while, so the bra will fit differently over time.)

7) Your Recovery Will Be Your Own
Part of the benefit of being a member of the BRCA sisterhood is that you have lots of ladies to compare notes with. The downside is that, just as no two women are alike, no two surgeries or recoveries are the same. If you have your drains in longer or stop taking drugs sooner, that's great -- because that's what you need. Some women are instructed to wear a bra immediately after surgery, some aren't allowed to put one on for a few days. Just follow your doctor's advice. And don't worry to much about, say, what you should be feeling like on day five. You feel like on day five what you feel like on day five. Doesn't matter what I or anyone else felt like. You are you. And your recovery will be yours.

8) Don't Be Afraid to Call Your Doctor
A few days after I got home from the hospital, my drain site on my right breast was really irritated. It itched. It was red. I was afraid it was infected. But I noticed all this very late at night (you tend to keep odd hours after surgery) and thought it would be rude to call my doctor. So I hemmed and hawed and paced and equivocated and then finally picked up the phone. The doctor didn't seem upset (as well he shouldn't because he's the medical professional and I'm the patient) and told me what to do. The moral of the story: that's what they're there for. If you have a question, call. It's not like this is something we go through every day. And sure, there are odd things that our new boobs will do while they are healing that are perfectly normal. But we can't know that. So don't be afraid to ask.

9) Ask for Help
Whether it's climbing into bed or getting a glass of water, for the first few days at least, the stuff we do without thinking twice about will be hard to impossible without assistance. This gets compounded, unfortunately, by the fact that it's difficult to articulate what help you need, especially when you're on pain meds. I remember being so frustrated that when I gave vague instructions like, "Hand me the thing. You know, the thing that's used for that thing. The thing that's in the cabinet above the thing. Why are you being so annoying? I'm making myself perfectly clear!" I did not get the desired outcome as quickly as I wanted and often tried to do it on my own. The lesson here: know it will be hard to explain yourself, but be patient with your caretakers, too.

10) Celebrate Your Body Now, But Know There is So Much Yet to Celebrate.
As a fun thing to do with your husband, I recommend casting your breasts. Reappropriate one of these belly casting kits and go to town. It's messy (and not necessarily sexy, like Ghost-pottery-wheel messy sexy), but it's a fun and inexpensive way to commemorate your body as it is now. But don't think, like I did, that there won't be anything to celebrate after surgery. Truth is, you'll probably look even better (I know I do), so look forward to celebrating your new body, too.

Good luck, my dear R, and all the BRCA ladies out there facing surgery. I know you'll rock it.

Life Insurance

2010-03-04T10:04:00.000-08:00

I meant to blog about being BRCA+ and obtaining life insurance a while ago, but an article that appeared yesterday in the Sydney Morning Herald gives me occasion to remedy this oversight. Although the piece touches on all aspects of genetic testing (and how the results might effect insurance coverage), for our present purposes, it features a BRCA+ woman who struggled to get life insurance after her positive result.

Eventually, [Dianne Fisher] was able to obtain cover but at the cost of a high premium. "I [subsequently] had both my breasts removed and my ovaries removed," Perth-based Fisher says. "But I still had difficulty getting my insurance dropped down to a normal rate, even though I now have no risk whatsoever of getting breast cancer or ovarian cancer."

Now, forgiving for the moment that she is a little misguided about her breast and ovarian cancer risk (even risk-reducing surgeries don't eliminate entirely the possibility of cancer), she has a point: on the one hand, yes, we have a genetic predisposition to developing certain types of cancer, but on the other, that information allows us to make choices about our health to lower our risk below that of the average women. So how should we be classified by insurers? High risk or low risk?

The article was out of Australia, and it illustrates that different countries regard genetic test results differently. In the UK for instance, the article reports, "Insurers abide by a voluntary ban on access to predictive genetic tests that was agreed with the government in 2001. The moratorium applies to policies of up to £500,000 ($858,400) of life insurance." In the US, it reports, "The 2008 Genetic Nondiscrimination Act now states health insurers can't deny coverage or charge higher premiums on the basis of genetic test results." But, of course, GINA does not apply to life insurance, so it's a bit of a mystery how it is factored in in the US. (A spokesman for the American Council of Life Insurers says in the article, "In general, insurers are not quick to embrace new technologies such as genetic testing." Which seems a little absurd to me, but moving on...)

So how does it work on the ground? My experience with life insurance was positive, even after testing positive. In fact, although I recommend getting life insurance BEFORE you get your test results, it is far from impossible to get good coverage at a good rate AFTER your test. To be honest, life insurance was the furthest thing from my mind before I tested; all I was focused on was the result. It wasn't until I learned my status and decided to proceed with prophylactic bilateral mastectomy that I recognized the need to buy a new policy (I have one through work, but it's not very big). At this same time, G and I were in the process of buying our first place, and I realized that we both needed policies, should something happen to either of us, to help with mortgage payments, student loan repayment, etc. All of our insurance policies are through State Farm, and our agent is wonderful, so last summer, G and I went to her office to discuss life insurance. I was completely honest about my genetic test results. She had never encountered such a situation before (just goes to show how rare we really are), but thought that it wouldn't affect my rate at all. I was completely honest about my health history and went through all the requisite physical examinations. And in the end, she was right -- my genetic test results didn't affect my rate at all. I did not, however, qualify for the preferred rate (and instead was covered at the standard rate) not because of BRCA but because of three other little letters that have haunted my life: OCD. I've been treated for the condition since grade school, and apparently, a history of an anxiety disorder is more damning that a genetic prediction of my future cancer risk. (On this note, there have been a spate of fascinating articles and studies published recently debating the efficacy of antidepressants, and a recent essay by Louis Menand in the New Yorker, which asks whether psychiatry can be a science, points out that treatment of mental illness can affect insurance rates for those that might not be sick, only different. I definitely had no idea my history with anxiety could be a black mark on my medical record in this way.)* Incidentally, G wasn't covered at the preferred rate, either, because he takes blood pressure medication (medication I secretly don't think he needs). It just goes to show you that it's always something (in the words of the Roseanne Roseannadanna).

I've now got life insurance, yes, but it likely isn't enough. It's enough for now, of course, but going forward, as G and I start a family, we'll need to revisit the issue. We also bought term policies instead of whole life policies (which accrue cash value), mostly because we felt we couldn't afford the latter right now. But in the future, this is likely something we'll invest in. Also, we didn't necessarily shop around; we went directly to someone we like who represents a company we trust. Maybe next time we'll do more research. But the questions remain: How will my rate be affected now that I've had preventative surgery? How will my rate differ now that I'm off meds (that's the subject of a very happy post that's yet to be written)? I'll let you know when I find out. But for now the message is this: even if you are BRCA+, you can get life insurance. And if anyone wants the number of my agent, I'd be happy to share. She's a doll.

* In researching this post, I also came across a new study that suggests antidepressants may block Tamoxifen. Not that this has anything to do with the topic at hand, but suffice it to say that's another reason why chemoprevention would not have been right for me.

The Scar Project: What Would You Do?

2010-02-26T10:11:00.000-08:00

Last Spring, when I first learned I carried the BRCA2 mutation, my dear friend D suggested I reconnect with T, a fellow NU alum, who, in the years since I had seen her last (probably at graduation), had been diagnosed with breast cancer. At age 27. (Pause for reflection on the unpredictability -- and occasional shitiness -- of life.) T, who does not have a BRCA mututation, is now in remission. But she kept a blog during her cancer year, and, as I was just beginning to write my own, I read through the whole thing, absolutely rapt. It was through one of her entries that I first learned about The Scar Project, a photo collection of breast cancer survivors (the image at the top is representative of the quality and candor.). Eventually, T, who'd had a mastectomy, was photographed herself for the project, and the resulting image was so bold, so brave, and so beautiful, and I wondered if, when I had scars of my own, I would be ballsy enough to do the same thing: stand in front of a camera, look into its lens, and dare the viewer not to pity me but be empowered by my strength.

Fast forward nearly a year: I have scars. And I have new breasts -- breasts I'm crazy about showing off. It's not that I'm a an exhibitionist; in fact, before my surgery, I would say I was a bit modest (and I've written about my long struggle to accept my natural breasts and allow others to see and touch them). The first time I ever participated in a show-and-tell (I just looked and learned) with BRCA+ women who'd have surgery and reconstruction, I was incredibly uncomfortable; I was shocked at how casually the women popped off their tops and bras and allowed me, a stranger, to feel (feel!) their breasts. I remember thinking they all looked like proud pheasants, chests jutted, showing off their plumage. But something changed when I had surgery; I became one of them. I flash people ALL THE TIME. At book club a few weeks back, talk quickly turned from the book at hand to my boobs, and after sufficient champagne had been consumed, they were made available for inspection (it turns out, one of my fellow book-clubbers is considering testing for the BRCA mutation, so I was especially glad to show her, "Look, if I'm the worst case scenarion, look at how good it looks."). Last weekend, at my housewarming party, my boobs made a late night appearance. When this happens, the intention is never grandstanding; it's to inform and to educate. Most of my friends, that is, women in my non-BRCA life, have terrible misconceptions (as I did) about mastectomies; they imagine my chest slashed and resewen with cartoonish Frankenstein stitches. And I simply want to show them that that's not the case: I'm not walking around hiding a monstrous deformity under my clothes. I'm whole. I'm beautiful. I'm proud. It seems strange to say this, but my breasts are no longer just my own; they belong to the collective. They can evangelize; they can convert.

And so, it was with this in mind that I contacted David Jay, the photographer behind the Scar Project. I told him my story and he wrote back, inviting me to New York in April to pose for a portrait. I'm both incredibly excited about this opportunity and wholly terrified. The Project, so far as I can tell, has only featured survivors, and that's something I'm not. I didn't have breast cancer. But, nevertheless, I still lost my breasts to breast cancer. I lost my breasts to the fear of breast cancer, to the likelihood of it. Sure, they've got a fancy neologism for what I am, but I wonder, in this case, is being a previvor good enough? Are my scars poignant enough? Is my story not tragic enough?

Those are the philosophical questions I'm wrestling with. But there is also the more pedestrian concern: if I agree to do this, there will be a topless photograph of me on the internet. Now, granted, this isn't the same kind of topless photographs that ruin beauty pageant contestants or boost the careers of the talentless Kardashians. And of course, the purpose of these photographs is to be inspiring and educational, not to be raunchy or sexy. But am I ready for that kind of exposure? I value my (semi)anonymity; I'm able to blog so freely here about my experience and my boobs because I know that no one googling my very distinctive full name will come across this page. I'm not "out" on Facebook because I'm friends with certain people (I think mostly of people like my high school basketball coach and professional colleagues from work) that simply don't need to know about this part of my life. My career is very important to me; although I have no shame in what I'm writing here, I do not want future employers' first contact with me to be through this blog. Sure, it shows I can string a sentence or two together, but boobs and what hell I've been through with them are entirely separate from my professional aspirations. (All of this of course, will change, gladly, the moment I have a book contract in hand. But there's a lot to do before that happens. Like, I have to write a book.) All of this is to say, I'm in control here; if I pose for a topless photograph, I lose some of that. But I also have the power to reach so many more with my image than I do with my words.

All of this is to ask, dear reader, what should I do? What would you do? My husband says go for it. My heart says go for it. But my head tell me I should think about this a little more. What do you say?

Running and Revision

2010-02-19T13:02:00.000-08:00

Last Saturday, I saw my plastic surgeon for a check-up. The meeting was notable for two things: 1) He told me I was free to run again (more on that in a moment), and 2) That I should probably consider having revision surgery.

Let's start there. My breasts were wildly uneven before surgery. Lefty was the runt of the litter, and righty was leader of the pack. After surgery, the reverse is true: lefty is full and voluptuous, and righty is, well, a little deflated. The asymmetry is not as bad as it was pre-surgery, but things are definitely a little off. The problem is that, because more tissue was taken from my right breast than my left, the pocket that was left was larger and isn't filled completely by the implant; the solution would be to swap out the implant I have for a slightly larger model and sew 'er back up. My doctor said the procedure would take about 30 minutes (which is astonishing to me, but OK) and that I would be back to work the next day (which, again, just having gone through major surgery and a long recovery, seems unfathomable). And from a plastic surgeon's perspective, I can see why he thinks I should have a revision: he is trying to create perfection. But I'm not so anxious to go under the knife again, not matter how simple a surgery it might be. Because in this fundamental way, my goal is very different from his: I don't want to be perfect, I just don't want to get breast cancer. And I think I've accomplished that (at least the statistics, which put my risk at 1/17th of my pre-surgery risk, bear that out).

I found myself thinking about the opportunity to swap out my implant today while I walked to get lunch and had one of those Talking Heads' "well, how did I get here?" moments. Implants? Who wha huh? I don't have implants. Brief emotional short circuiting. Wisps of smoke come out of my ears. One foot in front of the other. Realization: I do have implants. And that's the disconnect: I don't call my breasts by the material they're constructed of; I just call them my new breasts. And no matter what they are propped up with, I don't want anyone pointing knives at them again anytime soon. I'm happy and whole and imperfect. Enough said.

The other exciting development is that I'm back on the treadmill again. I don't consider myself a runner so much as some who runs, and there is a big difference there. A runner is much more serious about running than I am and identifies themselves by their participation in that activity. I'm just someone who, to stay fit, runs. And to be honest, I don't even like running all that much. I find it really hard. It hurts. I rarely want to do it before I'm actually doing it. But it is immensely satisfying: I feel incredibly powerful and capable when I'm running, and even when it feels bad, I feel like I've accomplished something great. The other problem with running is that I will abandon the pursuit for months at a time. I didn't run for weeks before my surgery. And over the past year, I can think of a dozen mini-hiatuses I've taken. But yet, to be told I can't run (rather than chose not to) was terrifying. I remember one of my first questions when I first decided to consider surgery was how long will it be before I can run again? (Such a strange thought, given, again, I am not a runner.) The answer, it turns out, was about eight weeks.

Now, a runner would have bounded out of her plastic surgeon's office and laced up her shoes. But I waited two days to go for a jog (in my defense, I had plans Saturday afternoon after my appointment that quickly turned excessively boozy and I was hungover all day Sunday, so you know, I have my reasons). Reader, it sucked. I hobble-jogged two miles and called it a day. The next day, my quads felt as if they'd been swapped with slabs of concrete and my knees replaced with unbending steel poles. I could barely walk, let alone run. But I tried it again last night. Progress! I ran three miles and felt good: spent but accomplished. It'll take weeks still until I can reclaim my stamina, and my legs will likely protest, but I'm glad to be back to it again. Oh, and my boobs? Didn't even notice them. They don't move at all. Lesson: running with fake boobs is in no way different than running with real ones. It's your out-of-shape legs you've got to pay attention to.

This one goes out to the one I love

2010-02-17T12:46:00.001-08:00

(photo of G, afloat in the Pacific Ocean off the southwest coast of Costa Rica)

I've sung the praises of my husband before (but that was all before he cleaned my surgical drains -- am I right ladies? It takes a special kind of man to do that), and on this, his 31st birthday, he merits a post all of his own.

To my dearest G, on your birthday,

A few days after surgery, when my chest was tight, my mind was fogged by painkillers, and my entire sense of the world was out of whack, you did something that you do so often, I almost took it for granted -- you made me laugh. And why do I remember this moment, out of all the hundreds of thousands of other times you've made me laugh? Because it hurt. It hurt so much to laugh right then. It was like my entire torso was being pulled apart; it hurt so much I couldn't breathe. And at that moment, I got scared. Laughter is the currency of our relationship. We even, in our very nontraditional wedding vows, promised we'd keep the laughter alive in our marriage. And I feared at that moment that I would never be able to laugh again with you. I feared that laughter would cause pain.

Luckily, for me and our relationship, the soreness and tightness receded, and as it did, I was able to laugh again, and it brought me the lightness your intended. I can't imagine being with anyone who makes me smile bigger or laugh harder than you. You bring light to my life with your presence, and without you, I'd be a far gloomier person.

This time last year, I threw you a big party for your 30th birthday. It was an incredible celebration -- even though I may have overindulged in the vino blanco -- and for a long time, I looked back on that as "the last happy time." Six weeks after that party, we began our BRCA journey, and life, I thought, would never be good again. But it is. And you had the foresight to see that I would be happy -- we would be happy -- again after surgery. So this year, your birthday marks more than just the passing of another year; it is proof that life, despite its unexpected twists and turns, can still be magical.

The world is so full of beauty. I found myself weeping in the car the other day, not because I was sad, but because the song that came up in shuffle -- the Rolling Stone's "Loving Cup," the song to which we shared our first kiss as husband and wife -- reminded me how lucky I am to be alive, to be with you, to experience this wondrous world together.

Happy birthday to my husband, my best friend, and the funniest person I've ever met. In the immortal words of Fleetwood Mac, you make loving fun.

XOXO,
S

Intimacy after Mastectomy

2010-02-11T10:22:00.000-08:00

Let's talk about sex. (Dad, don't bother reading any further. K? Thanks.)

It's nearly Valentine's Day, and last night I attended a sex toy party given for high-risk women by the support group Bright Pink at the fabulous women-owned, women-friendly erotica peddler G Boutique (where I treated myself to a super cute Betsey Johnson bra -- in cup size D, hello! -- and a little something else I'm not divulging here), so love and sex and all of that are on my mind. I've read women's accounts of sex after oophorectomy (surgical removal of the ovaries), but I've haven't seen many accounts of sex after mastectomy (Ok, I just googled that and came up with over three hundred thousand hits. So I guess it has been written about. Well, here's another drop to add to the bucket.), so consider what follows a public service.

But in order to discuss sex after mastectomy, I think it's important to review sex before mastectomy. The truth is, the day I learned I carried the BRCA mutation was the day I started to feel differently about my breasts. And that's when I started to distrust my body. I got angry at them, I became scared of them, and I no longer felt much like playing with them, since they themselves weren't playing fair to begin with. But, at least from a sexual standpoint, my breasts were always support players rather than the main act. My breasts have never been particularly erogenous; in fact, I've never quite liked any of the suckling guys are wont to do because, from my angle, at least, it looked like they were nursing, and that did absolutely nothing for me, visually or physically. Nevertheless, I've permitted the sucking and the grabbing and all of the sex acts committed upon and between breasts not for my pleasure but for my partner's. So when I learned my breasts might try to kill me someday, I sort of withdrew them from sexual consideration. Sex during my BRCA year was pretty boobless. Sure, my husband gave them a Benny Hill-esque honk once in a while, but, hopefully, understandably, I didn't much feel like being touched there. (The notable exception to this rule was in the final weeks before surgery. I let my moratorium expire and we did everything we could to them one last time.)

Fast forward to sex life after surgery. I am no longer suspicious of my breasts. But I am by no means comfortable with them. Tomorrow will mark seven weeks since my surgery, and my reconstructed breasts look nearly healed; the jagged incisions are fading under the magic sheen of the scar reduction gel and the bruises are distant memories, as are the drains and gauze and bandages. But I can't help but still think of my breasts as being under reconstruction: my chest in a surgical site, and as such, it can't be disturbed quite yet. I was terrified of developing an infection after surgery and was diligent about care for my incisions, drain sites, and other wounds; and now that I'm healing, I still think of my breasts as a sterile area: no touching without first washing hands and using antiseptic. I've been through so much in the past two months (and indeed, year), it's hard to transition so quickly from breasts-a-site-of-trauma to breasts-as-objects-of-desire.

The other problem, I've found, is that I feel, frankly, fragile. Sure, I understand silicone is strong and my implants are in no danger of rupture from routine married-person sex. But I've been told I can't do things I normally do -- like go running or take a yoga class or do pilates -- because I'm still healing. So reason stands that I shouldn't do anything, including sex, that might compromise my recovery. Which is why, when we've done it, we've left the boobs out of it. Shirt-on sex is not ideal, of course, but it is possible to be intimate given the restrictions. I'm just not sure, personally, how long it will before I'm ready to doff the top and be uninhibited once more.

A very wise BRCA previvor (and certified psychologist) told me that sexuality after mastectomy is a lot like going through a second adolescence. Not only will you have a new body you are uncertain of and uncomfortable with, but both you and your partner will be unsure of what to do, how hard to do it, and when to do it. Imagine groping, fumbling hands unsure of their target or purpose. And what's more, since your new body is at least partially numb, there are no physical cues you can rely on to help guide you in pursuit of pleasure. This advice was frighteningly prescient and eerily accurate. Uncertainty? Check. Fumbling? You bet. Shyness? Yes. But like adolescence, this is a phase I will grow out of. I will become more comfortable with my body and husband will too (I think he already is. He's just waiting permission to get grabby again) and before you know it, we'll be back in sack again. But it doesn't happen overnight. In an oversexualized society, I sometimes feel guilty I wasn't ready to let my porn star tits out to play right away, that I'm taking too long to become fully sexual again. But all of this is uncharted territory, and I'm trying to do what feels right to me. Each of us will recover our sexuality at her own pace, and this is the (frank) truth about mine.

Now, in the spirit of Valentine's Day and the best television drama since the Wire, here is Mad Men's Peggy Olsen with a sexy little come-on:

Happy Valentine's Day! All my readers are my special Valentines!

A Survivor who didn't Survive

2010-02-05T12:42:00.000-08:00

Celebrities! They're just like us! The pick their noses while they pump gas! They wear slippers and a robe to grab the newspaper at the end of their driveways! They buy milk at the grocery store! Tabloid magazine devote whole spreads to photographs of celebrities doing "normal people" things, and we find it fascinating because the people we see on our televisions and in our movies must be so much more interesting, so much more evolved, so much less human than we ordinary, anonymous, everyday folks. And so it shocks us when a celebrity gets sick. And it effects us when they die. They are not immortal, though we ascribe them that quality.

I don't watch Survivor, so the name Jennifer Lyon meant nothing to me until I read her obituary: diagnosed with stage III breast cancer at 32, dead at 37. Apparently, she made it far in the competition and was well liked by fans. But despite her fame, despite her having appeared on our television screens, she still died. Celebrities... they are just like I could have been.

I'm an armchair genetic mutation spotter: I diagnose fictional characters in modern literature and I diagnose dead reality television stars. I can't find any confirmation that Jennifer had a BRCA mutation, but the evidence suggests something was amiss: she was diagnosed so young, she had an aggressive cancer, she relapsed within five years, and then the disease spread throughout her body and she died. 32-year-olds shouldn't be diagnosed with cancer and 37-year-olds should die from it. But whether or not she had a BRCA mutation, she was also failed by our health care system. When she first found a lump, she was uninsured, so she did not seek treatment. By the time she found another, she was sure it was not scar tissue from her breast augmentation (as she had originally written off the first abnormality). And she was right: it was stage III cancer. She went through chemo and started a course of Tamoxifen, but in the end, it wasn't enough.

I've written before about the new mammography guidelines, and I've written before about the need for a public insurance option. But Jennifer's story gives me an opportunity to again note the shortsightedness of the new rules and advocate for greater access to insurance for all. According to a recent study, 35% of uninsured breast cancer patients die within five years of diagnosis compared with 23% of privately-insured patients. So Jennifer was already at a disadvantage. Additionally, because she didn't seek help when her cancer may have been caught at an earlier stage, she had only a 54-67% chance of surviving stage III cancer to begin with. She had a lot of handicaps she needed to overcome; unfortunately, the disease and her circumstances didn't allow it.

RIP Jennifer. You were too young.

Photographs from My Former Life

2010-02-02T10:08:00.000-08:00

Five days before my surgery, I posed for some nudie photos. Well, technically speaking, I was only topless, but it was the nudest I've ever been in front of a camera. The photographs weren't intended to be raunchy. They weren't supposed to be sexy. They weren't even intended for my husband -- I took them for me. And as such, they were to be documentary. They were to be true. They were to capture my body as it existed at that moment, my body as it existed before it changed. They were to be my memories.

I got a DVD of the photos a few weeks ago. It was a odd anti-climax: I was glad to have the document, but I wasn't anxious to look at it. I was afraid I'd be overcome by sadness, by regret. I feared that looking upon my old boobs would cause my post-surgery confidence to crumble. I didn't want to look at those pictures and envy the woman I saw in them, a woman with her natural breasts, a woman whole.

Last night, I finally looked at the photos. First, let me acknowledge that as a woman, I am hyper-critical of myself in photographs. I won't post pictures on Facebook taken from unflattering angles, allow others to post photos in which my arms look fat, my face looks fat, my fat looks fat, etc. And so my first reaction to my naked torso staring back at me from my computer screen wasn't so much "Hey, look! There are my old boobs!" as it was "Get thee to a gym, sister! The abs of steel have melted!" (and, to be fair, I'm a textbook stress-eater, so in the weeks before surgery, I was having my cake and eating it, too). But once I looked past the unsightly bulges, I saw something astonishing: peace. I was an absolute emotional zombie in the weeks leading up to surgery. Every waking moment of every day was devoted to thinking about surgery, worrying about surgery, fearing surgery. I was convinced I was going to die. At one point, I made a conscious decision not to buy conditioner even though I was running out because, in my warped thinking, it would just be another thing that would be of no use to me because I'd soon be dead. I was so burdened by my fears, I was lost in an emotional fog. I was out of my mind. But, yet, somehow, in those photographs, I look happy. I look confident, I look sure, I look proud.

But enough about my face. What about the hooters? Well, it was good to see the girls again. They are, for the most part, as I remember: uneven, slightly deflated, imperfectly mine. But seeing them again didn't make me sad. I didn't feel regret or pain or loss. It was kind of like looking back at pictures of my cats when they were just wee kittens; I was nostalgic. And the pictures made me smile. Yes, that was me then. And here I am now. And despite the changes, I'm still the same person. I can look at that version of me and empathize with her fear, remember the sting of her pain. But I know something she doesn't. I know how her story ends. I know, ultimately, it's a happy ending: she emerges from the clouds and is reborn with new breasts and a new hope. And yet, remarkably, there is that unexpected serenity, an optimism in my eyes, despite my uncertainty. And that's what I'm grateful for: not only do these pictures immortalize my old breasts, they capture my grace, my strength despite my circumstance. And in some ways, I'm more proud of that than I am of my rack.

I'm not sure what I'm going to do with the photos. I can't exactly put my favorites in a frame and set them in my living room. But perhaps I make an album, select a few and mount them in a book I can revisit from time to time. It will be just for me, a keepsake from a former life, a life in which the electricity of the unknown is still palpable. It will be a portal to a different, more troubled time. But it will also be a place I can check in on my former body, regard it with affection, and move on. I've got new boobs now, boobs I'm not afraid of, boobs that no longer rule my life.

Touch Me, Feel Me

2010-01-27T12:04:00.000-08:00

Before surgery, I was unsure about how my reconstructed breasts would feel (and how I would feel about them). In talking to the many brave women who had preceded me into this strange new world, I gathered that I would lose a lot of skin sensation and that, while at first my implants might seem like foreign objects beneath my skin, I'd eventually get used to them. But that's about all the information I got. So, as a public service to all those out there considering prophylactic mastectomies (or any kind of mastectomy), I'm going to try my writerly best to describe for you as evocatively as possible how my breasts feel and what I feel (both literally and figuratively) about my breasts. (And if you are my dad or my boss or anyone whose relationship with me might get a little awkward if you continue to read this, I'd suggest here is a good place to close your browser window).

How My Breasts Feel

When I was younger, before I even had breasts to do self-exams on, my mother brought home a boob. It was, I realize now, a silicone implant. And hidden in it was a lump. It was a practice-finding-a-lump-in-your-boob boob. I have no idea where she got it. "Here," she said, handing me the thing, which I looked at with distrust. "Close your eyes and feel around and see if you can find the lump." I did. It was hard to miss. "Now," she said, "you'll know what to look for when you begin to do self-exams."

The whole experience terrified me. But it made a lasting impression. So much so that when I was finally brave enough to touch my breasts in a clinical way and actually perform a self-breast exam, I was horrified by what I felt. My breasts were FULL of lumps. I was barely out of high school, and I thought I was already dying of breast cancer. My boobs felt NOTHING like that practice boob. Mine were full of stuff, and whatever it was I was feeling in there scared the shit out of me. I realize now all that stuff I felt was the milk ducts and nipple areola complex and the various lobules and and other funny words for the things we ladies have in our hooters. But the radical disconnect between what I was expecting and what I found really left an impression on me, and up until the end, I was always a little fearful about what I would find when I would do my monthly self-exams.

I tell this story because now, after reconstruction, my breasts today feel like that practice boob I felt, lo, those many years ago (sans lump, of course). And I'm pretty happy with that. Gone are the weird structures, the lattice work of veins, the strange disc behind my nipple. Now my boobs feel uniform and consistent. There is nothing hiding in them; they are all form and no function. A lot of women resort to metaphors involving water balloons to describe the feel of implants, but in my experience (I chose to have silicone implants, which are touted for being more "life-like" -- though, as I've noted, they are in fact in no way like real life, being absent of all the fillings -- than saline implants, which, to me, did actually feel like water balloons) they are much more firm, more malleable, less distensive. But their most remarkable feature is not what they have but what they lack. I finally have the boobs I thought all boobs were supposed to feel like; how ironic the path I traveled to get them.

What I can feel (and how I feel) about my breasts

When women who have had PBMs told me that after surgery, they were almost completely numb, I had no idea how to process this information. After all, by its very definition, numbness denotes a lack of feeling. How are you supposed to imagine something that feels like nothing? But I still wanted to know so badly how it felt (despite the aforementioned absence of feeling) so I turned to dentistry. The times I've been numbed have all occurred under the bright adjustable lights in my dentist's office, so I tried to imagine what I felt there and equate it with what I would feel in my breasts. But, to me, the most notable thing about being numbed at the dentist isn't the numbness; it's the tingling sensation in my jaw as feeling returns. So, in my flawed logic, I sort of imagined my breasts would tingle. I know. But humor me.

My breasts, of course, do not tingle (and if they did, I would be concerned). But they aren't completely numb, either. I have almost full sensation from my nipples up; I can respond to touch on my sternum and in my armpits and along my sides. But you could put a cigarette out on the lower half of my breasts and I wouldn't be any wiser until I smelled the burning flesh. I suspect the position of my incisions (they are inframammary, which means under the fold of my breasts) has something to do with the total lack of skin sensation on the southern end of my boobs, and I don't have any expectation this will change. As for my nips (Dad, seriously, if you are still reading, stop), I do have some feeling (mostly the ability to recognize pressure being put on them by touch) if not any actual sensation. They continue to react to hot, cold, and excitement.

The strange contradiction about having breast implants and skin numbness is that though you cannot always feel your breasts, you almost always are aware of them. I'm five-and-a-half weeks out from surgery, and I have not yet gotten used to their obtrusive presence. I feel them every time I open a door, every time I stretch, every time I reach up to grab the cereal from the cabinet above the frig. Of course, it's not my breasts I feel -- it's my body reacting around them, and any movement involving pectoral muscles will move the implant, thus drawing my attention to it. Yes, they do feel like foreign objects, but I'm getting used to them. And before long, they will just feel like me -- a quirky part of me, but me nonetheless.

Which leads to my final point about my new rack. I was desperately worried that I would hate my new breasts, that I would look down on them and dismiss them as impostors. I don't hate my new breasts. I don't love them, either. But I neither loved nor hated my natural breasts. I accepted them. And that's what I've done with my reconstructed breasts. They are by no means perfect, but few things are. As long as I'm not actively at war with my body, at least emotionally, I consider this a victory.

I realize my experience (from the emotionally-scaring practice boob to the dentistry expectation to the sternum sensation) is uniquely my own. But I hope it might help others understand what to expect on the other side of surgery. After all, this is difficult to articulate (as demonstrated above) and tricky to explain to those who haven't felt what we feel (or don't feel, as the case may be). I may be physically numb in places, but I still feel whole. And that's as good an outcome as I could hope for.

Lessons Learned From My Mastectomy

2010-01-18T16:08:00.000-08:00

It has been exactly one month since my mastectomy, and I've learned a lot in the past four weeks. Originally, I thought my blog posts after surgery would be rather straightforward: this is what happened to me on this day, and this is what you can expect on that day when you are recovering. But I realized quickly that my recovery is so very different from anyone else's, and that everyone heals at her own pace, that it wouldn't be very helpful to simply chronicle day-by-day changes. Plus, this blog hasn't been a forum for diarying as much as it's been a place for me to contemplate the bigger existential issues -- the "what does it all mean?" aspects -- of life as a previvor, and my posts here have been more like essays or ruminations on subjects than anything else. So I can't offer you a play-by-play of what to expect in the first month after your mastectomy, nor do I want to tell you every little detail about what happened during mine (mostly because it would be SO boring. Day 9: Slept. Day 12: Slept. Day 16: Slept). But I do think I have learned some things worth passing along, and so I proffer this instead. Behold: Five Things I Learned From My Mastectomy.

5) A mastectomy removes only your breasts; it does not change you in any other way.

This may seem like an obvious one, but bear with me. Before surgery, the mastectomy seemed like such a game-changing event, such a cataclysmic tear in the very fiber of my existence, that I imagined I'd wake up (if indeed I did -- remember, I was pretty convinced I was going to expire on the table) a completely different person. I also imagined that life after mastectomy would be very different. And to some extent, it has. But I also made the mistake of thinking that things would magically be better. This is a common mistake. Women do it a lot, especially when we want to lost weight. For example, say you want to lose ten pounds. When you imagine yourself at your goal weight, you aren't just you: you are not only thinner but happier, you always have good hair days, the lights always are green for you, and your partner always emptys the dishwasher. It's a Disney-fied version of your life, where the bluebirds alight on shoulder and the deer in the meadow pause by the brook to let you pet them. This fantasy occurs when we conflate the idea of happiness in one area with happiness in unrelated areas. And I fell into this trap before my mastectomy. I imagined that on the other side of surgery, life would be better: sunrises would be more brilliant, I would be thinner, people who are jerks would no longer be jerks, and my partner would always empty the dishwasher. Guess what? I haven't seen a sunrise (remember: all I've been doing for a month is sleeping), but I haven't lost (or gained) a pound, jerks are still jerks, and I just emptied the dishwasher all by myself. Which is fine. Because a mastectomy has nothing to do with the dishes. That's why I say a mastectomy does exactly what it's supposed to do; nothing less and nothing more. I recently saw a friend for the first time since my surgery and after we'd been chatting for a few minutes she look at me stunned and said, "Geez, you are exactly the same." And I understood the impulse. In fact, I remember thinking the same thing about this very friend after she'd had her daughter a few years back. Mastectomies don't change who you are any more than having a baby does, but they are such monumental, life-changing events you can't help but marvel that you come out the same person you went in. And what a relief! I know my friend meant what she said as a compliment, and I took it as such: she was happy to see that after everything I'd been through, I was still her old friend Steph. Just with new boobs. Which is exactly the only thing that has changed. As it should be.

4) Getting your teeth whitened hurts more than having your breasts removed.

I've allowed myself a few indulgences to celebrate my recovery from surgery. I've gone shopping and I've gotten an edgy new haircut (with bangs! The last time I had bangs, I hadn't even developed boobs!). But to really treat myself, I decided to get my teeth professionally whitened (remember: mastectomies do not whiten teeth, even if in your post-surgery fantasies your smile is suddenly sparklier). Big mistake. I expected discomfort the procedure (the dentist uses a tool called a "cheek separator" -- I'll leave it to your imagination what it does and how it feels) but I had no idea I would be in howling pain for hours afterward. My teeth, I've since learned, are particularly sensitive to whitening agents. My mouth hurt so much, I asked my husband several times to punch me in the face, because I was sure a broken jaw would both hurt less and distract me from my pain. It hurt to talk. It hurt to breathe (the air on my teeth triggered shooting pains). And the ironic thing was, it hurt SO much more than my mastectomy. The gift I gave myself to celebrate recovering from major surgery hurt more than the major surgery. The lesson is this: mastectomies are really no big deal. But think twice before you get your teeth bleached.

3) The worst part of surgery is the fear and anxiety I felt leading up to it.

It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.

2) You get used to it.

The first time I saw my new breasts, I thought to myself, I'll never get used to seeing my nipple there (it is a lot closer to my face than it used to be). But guess what? I've gotten used to it. I thought, man, I'll probably never feel comfortable with the fact that I had a mastectomy. Guess what? I barely ever think about it. I thought that I'd never love my body again. But I already do. Yes, things are different. But I can accept that. I feared I would hate those changes. But instead I embrace them. After all, I chose to change. And I'm glad I did. Life under the threat of cancer was stifling. Now I'm free. I'm still getting used to that.

1) Life goes on.

Tomorrow is my first day back at work since my surgery. Physically, I feel fine. But I'm worried about faceplanting on my keyboard at about 2 p.m. After all, I've been pretty sedentary these last few weeks and my energy levels are still pretty low. But whether or not I'm discovered tomorrow afternoon curled up under my desk with a book under my head and my thumb in my mouth, it's time to get back to the real world. I had a dream recently that I went back to work and everyone was just sort of like, meh, whatever, there's a bunch of stuff you need to sign off on on your desk. And I was crushed. Where was the fanfare? Where were the hugs? But at the same time, I understood that this was OK, too. Because life isn't all about me and my breasts. Life goes on. And now my life can go on, too. But if my work friend do hug me, I hope they are gentle.

All of this is to say, simply, that there is life after surgery. It's mostly the same life you had before surgery. It's not that much better, but it's definitely no worse. There are much worse pains than the pain of surgery, and resilience and adaptation are partners in healing. But most of all, surgery changes only what it's supposed to: my mastectomy took away my breasts, my cancer-risk, and my anxiety and fear, but it didn't take away my personality, my sense of humor, my optimism, or my joie de vivre. And that, to me, is a very good outcome.

Post Your Bra Color As Your Status Update, Change Nothing

2010-01-09T17:39:00.001-08:00

Like many Facebook users, I watched this week as my girlfriends' status updates were replaced with one word colors, like "black," "white," and the occasionally more descriptive "purple lace." Unlike many Facebook users, however, I didn't get the invitation -- a chain email from an unknown source -- to post my bra color as my status update. I figured out what was going on soon enough (I'm so web 2.0 savvy) and decided against participating in the meme; it's not that I was embarrassed to tell the world I was wearing a white bra (and still am -- oh Natori sports bra, you are like my second skin, I'm stuck with you and you with me 24/7, doctor's orders) it's that I didn't see the point.

Only today did I learn that the point of this viral experiment was to, in the inelegant words of the invitation, "spread the wings of cancer awareness." Exsqueeze me? Baking powder? How on earth will cryptic status updates, most of which, I'm guessing, said "beige," raise awareness of breast cancer? If the "campaign" did anything, it raised awareness of what color bras my girlfriends were wearing. But mostly, I'm guessing, it just caused confusion. After all, this was a wink-wink-nudge-nudge girls' thing, no boys allowed, and the idea was to get men all intrigued about the colors and then when they figure it out they'll all get tiny erections and it will be like a big internet slumber party where the girls laugh and exploit their sexuality to get guys' attention. And, oh yeah, something about raising breast cancer awareness.

Call me a wet blanket, call me a party pooper, get out your trombone and blow the Debbie Downer wah-wah.(Please note, though, I'm not the first person to ignite the flames of backlash. Lots of others have commented on the inanity of the meme.) But I think this is, as NPR calls it aptly, slacktivism at its most offensive. Because, I hate to be brutal, but I mean, women with breast cancer, especially those who undergo mastectomies and don't opt for reconstruction, don't even wear bras. Because they don't have breasts. And women who die from breast cancer don't wear bras either. Because they are dead. It's like saying, let's raise awareness of hunger by updating your status with what you ate for lunch.

Obviously, I'm particularly impatient with oafish attempts at cutifying breast cancer. I've written before about my hatred of the pink ribbon, and this seems like just another hamfisted attempt to make cancer sexy (pink lace! hot!) while allowing people to feel like they are participating in something while actually doing nothing. As a card-carrying member of the double mastectomy sewing circle, I find the whole charade particularly silly. If I had more guts (I'm not officially "out" on Facebook) I would have updated my status as follows: "White. I'm three-weeks post-mastectomy. TMI? I'd rather tell you about my surgery than hear about your purple lace bra. Which will do more to spread awareness?"

The truth is, no matter how many people are "aware" of breast cancer, it's still going to strike and kill. Awareness is not enough. We need a cure. And that's not going to happen by posting our bra color for all the world to see. I may be cynical, or maybe just cranky (this bra is really very tight... and I wish I could just let the girls have a breather), but I feel like I have a right to comment. After all, what my bra contains -- breasts remade of silicone, breasts sacrificed for health -- is so much more important that what color it is. Oh, I am aware of breast cancer. I may have escaped its specter, but I live everyday with the bargain I struck to avoid it. I don't need status updates to remind me of that.

On the Nature of Boobs

2010-01-05T12:47:00.000-08:00

What are boobs?

At the risk of this sounding like the trite introduction to a grade-school essay, let's turn to the dictionary, shall we? Merriam-Webster is a little vague. Sayeth he: breasts are "either of the pair of mammary glands extending from the front of the chest in pubescent and adult human females and some other mammals." The answer, in short, is that boobs are glands. Gotcha.

That's the dictionary definition. But do prepubescent boys fantasize about getting their hands on some glands? Do anxious middle school girls stare hopefully into the mirror, waiting for their glands to show up? No. They are both waiting for something else. If the dictionary definition of boobs defines them by what's inside, then society's definition of boobs defines them by what's outside.

Sure, boobs are filled with tissue and ducts and lobules (a word I swear I'm not making up). But only surgeons think of boobs that way. No construction worker has ever catcalled a chesty babe with the line, "Hey lady, I like your lobules!" To everyone else, boobs are the mounds of flesh and fat that fill out a sweater or substitute for radio dials in 80s movies (Anyone remember that one? "Tune in Tokyo"? Girls Just Wanna Have Fun? Sound of crickets chirping...).

The reason I'm thinking about this is because I've found myself wondering, do I have boobs? (Doesn't that sound like the title of a Judy Blume novel? "Are You There God? It's Me, Steph Wondering If I Have Boobs." That one isn't as well known as the one with Margaret in the title. Anyhoo...) Because here's the thing, according to stodgy ol' Merriam-Webster, I don't. Glands? Got those scraped clean out. Lobules? Negatory. Tissue? Zip. But, if it were construction season, I bet I could count on a few wolf whistles from the scaffolding. So, who is right? The dictionary men or the professional sexual harassers?

It's a bit of a philosophical dilemma. Sure, I just had a mastectomy. I had all of the inner-workings of my breasts scooped out. So, technically, I'm boobless. But then, I was restuffed. I was reconstructed (like a cyborg machine that had experienced technical failures). And now, lobules aside, I have those fleshy mounds teenage boys (OK. All straight men) salivate over.

So, do I have boobs?

I'd like to think I do. A lot of women in the BRCA community refer to their reconstructions as "foobs" (as in "fake boobs"), which, to be fair is both accurate and catchy. But as a descriptive term, I don't think foobs is going to work for me. Am I really supposed to have to remind myself (and others) every time I refer to my bosom that they are fake? Clothes shopping with a girlfriend scenario: "How does this sweater look? It is too tight around my foobs? You know, my fake boobs? Oh, you didn't know? Yeah, I had a double mastectomy. You had no idea? Well, yeah, they're fake! Fake! Fake! Fake!" I mean, isn't the point of reconstruction to pass as normal? Why continually draw attention to the fact that we're not?

And are my boobs more fake because they are made of implants? If I had used belly fat or ass fat or back fat or thigh fat, would they be more real? No lobules in those recons, either. But I think because there are, let's be frank, foreign bodies sewed into my chest, implant reconstructions seem faker than most.

But yet, and here's the thing, they are mine. I said it in the last paragraph: "my boobs." If I keep calling them fake, I feel like I'm not claiming ownership of them, like I'm disavowing and disowning them somehow, or explaining them away. This was my choice, and these are my boobs, and no matter what the dictionary might say, they feel real to me. And they have to be. I can't possibly live the rest of my life looking at my body in the mirror, dismissing my reconstruction, constantly reminding myself I had a mastectomy. That would drive anyone, even the most confident woman, to shame. I'm not going to spend my life hating my body, treating it with contempt and revulsion. My sense of self is strong enough to accept the choice I've made, the implants I have. They are a part of me now, and I don't want to draw unnecessary distinctions just because I'm missing a few lobules.

So you won't catch me calling these things "foobs." They deserve better than that, and so do I.

On My Way Back to Normal

2010-01-03T19:15:00.000-08:00

It has been two weeks since I returned home from the hospital following my surgery, and sixteen days since the mastectomy itself. In truth, it feels like it's been much longer, like all of that occurred many months ago. I guess that's because both so much and so little has happened since then.

So much: I feel almost normal. But to appreciate how phenomenal a feeling that is, you have to understand how far from normal I felt just two weeks ago. When I returned home from the hospital, I couldn't not remember I'd just had a mastectomy: my chest throbbed, my muscles ached, my arms hung lifelessly at my side, my energy was low, and my spirits were down. Every time I coughed or sneezed or laughed, I felt it: the tightness, the soreness. I couldn't do anything--couldn't crawl into bed (which required help) or read a book (I couldn't concentrate on the words)--without reminding myself that I'd just had my breasts removed.

Now, I find myself so often forgetting. My drains were removed last week, Tuesday night to be exact, and once they were gone, I felt so free. Everyone says that drains are the worst part of the beginning stages of recovery, and I don't disagree. But my drains did more than tug at my skin; they depressed me. Being tethered to that very visual reminder of surgery, being encumbered by the twice-daily routine of stripping and measuring, really stalled my healing, both physically and emotionally. They were weights around my neck, literally, and they were dragging me down. I felt instantly much better after the surgeon threaded them out of my incision; it was like a great burden had been lifted. I never want to see those wretched things again.

Today, I feel so normal, so back to my old self, I have to stop myself from doing the things I used to do, the things I'm still prohibited from doing, like sleeping on my stomach (will I ever be allowed to do that again?) or reaching up to the top shelf of my closet for a pair of jeans or opening the sliding glass door. It's like my spirit is healing quicker than my body, and I have to remind myself to allow it time to catch up.

I'm also, as of last Wednesday, off the painkillers. And in quitting them, I felt like I emerged from a fog that had descended so quickly and unexpectedly I hadn't noticed it until I could see clearly again. I could think! I could read! I could again rely on my acerbic wit! I appreciate what those magical pills did for me--they got me through some tough moments--but I'm glad to be myself again.

So little: Until last Tuesday, I hadn't wore "human clothes" (I'd come to think of my button-down pajamas and zip-up hoodies as the uniform of the invalid) since the night before my surgery and had left the house only on a very few occasions. Time moves so slowly when you are inert, and the days both seemed interminable and interchangeable. Since then, G and I have ventured out a lot, but we're not breaking any land-speed records. Per doctors orders, I'm still taking it easy, which means sleeping about twelves hours a day and spending most of my day horizontal, either reading or flipping channels. In the past two weeks I can honestly say I've done next to nothing, and yet I've come so far.

It's hard to believe so little time has passed--at least by the calendar--because I feel like I been through a lifetime of healing. I'm still not 100% yet, and likely won't be for sometime, but I'm on my way back to normal. And I can't wait to get there.

Obligatory End of Year, Looking Back, Looking Forward Post

2009-12-31T13:46:00.000-08:00

This time last year, I was in New York City, getting ready to ring in a new year, like I had (at rough count, at least three or four other years this decade), at Madison Square Garden, watching, singing, and dancing to a band I loved. Champagne drunk at midnight, I had no idea, as My Morning Jacket launched into Kool & the Gang's "Celebration" (always a personal fave), what I'd face this year. I had no idea my natural breasts were bouncing and jiggling to the beat for the last time, that by the end of the year, they'd be gone.

The year that began in the early morning in Manhattan took me many unexpected places -- to Belize, to Costa Rica, to Cape Cod, and many places in between -- but none so unexpected as the operating room where I traded in my breasts for a chance to ring in many more new years cancer-free. 2009 has been, by any estimation, a year of tumult: first, my husband got a new job, moving from college professor to college administrator, and lengthening his commute from two blocks on foot to 45 minutes by car; then, the crushing news of being BRCA+, the anger, the sadness, the decision; then, our first wedding anniversary, clinking glasses at the bar of the hotel where we'd spent our first night as husband and wife, incredulous that so much could have changed in so short a time; next, our first home, a place we'd live, we hoped, in good health for many years; and then, my double mastectomy. And in the end, we'll remember 2009 as our BRCA year. Four little letters that meant nearly nothing to me a year ago have, in twelve short months, changed my life, my husband's life, my family's lives irrevocably. Everything is different now. Not even my boobs are the same.

Needless to say, I'm anxious to ring in a new year. I have no idea what 2010 has in store for us, but I can only wish it's less eventful than 2009. Please, no surprises, nothing major. Just twelve months free from drama. Tonight we will welcome the new year with friends we didn't know this time last years,friends we've made because of BRCA, friends who've shown me what life looks like as a previvor, friends who have stood by my side through surgery. It's a far cry from the frenzy of a rock concert at MSG, but it's a fitting way to see the year out.

Year-end lists are a popular (and gimmicky) way to sum up what has come before, and in that spirit, I'd like to offer my own: My top 9 blog posts of 2009. I began writing in March, even before I had my genetic test results, and the solace and catharsis that has come from writing here has helped me inestimably. I hope that it has helped other, as well. So, without further delay, my top 9 of '09:

9. Sorry, can't talk. I'm on my way to a cancer appointment
(March) In which I am genetically counseled

8. It was the breast of times, it was the worst of times
(April) In which I come out to friends (and the internet) as a mutant

7. The picture of health
(May) In which I have an MRI

6. The view from the other side
(June) In which I watch a good friend recover from a preventative mastectomy

5. Sky Rockets in Flight, Cape Cod Delight
(July) In which I spend an afternoon with a dear friend recovering from a rare cancer and wonder why I have a chance he never did

4. Previvors vs. Survivors in the World Series of Love
(September) In which I talk about how hard it is to be a previvor

3. The Keynote Speaker Has Left the Building
(October) In which I become a BRCA spokesperson

2. (Don't) Say (Just) Anything
(October) In which I offer the "Top Ten Things Young Previvors (Probably) Don't Want to Hear, and the Top Ten Things We (Probably) Do"

1. A Break Up Letter to My Boobs
(December) In which I say goodbye to boobs

Wishing all of you a very happy and healthy 2010! See you next year!

On Healing

2009-12-27T10:19:00.000-08:00

It has been nine days since my surgery, and I am well on my way to recovery. I'm not there yet, and I likely won't be for sometime, but I can see indisputable improvements every day. For example, my new breasts were, at first, terribly bruised, like they had gotten in a fistfight and lost. But now, there is only a slight patchy yellowish discoloration where the deep purple bruises once were. That's a lot of progress in just nine days.

But healing, I've come to realize, is both physical and emotional. And it's the latter I want to write about here.

Not to toot my own horn, but I can confidently say I tried as much as humanly possible to be emotionally healthy before my surgery. In addition to keeping this blog, which has been an indispensable outlet for working out my feelings, I've been in therapy since I received my genetic test results in April, I've been attending support meetings and networking with other BRCA+ women, and I've thought and I've talked and I've philosophized and I've explained and I've listed the pros and cons and I've imagined worst-case scenarios and I've developed a mantra and I've come to peace with the genetic mutation and my choice to have surgery. In short, I was very deliberate and thoughtful in my mental preparation; I went into surgery last Friday confident. I came out of surgery something different.

I'm just going to put it out there: I'm sad. This is really hard. And what makes it even harder is that almost no one in my position talks about feeling down after surgery; they all say, No, I never felt regret, I am 100% happy with my decision. And don't get me wrong, I do feel unburdened from a terrible weight. But am I 100% happy? No. I'd say I'm 80% happy, 20% sad. That's a pretty good ratio, but still, how do I deal with the sad, especially if admitting I'm sad undermines the confidence and bravery and all that heroism shit everyone was complimenting me on?

Here's the thing. Last Friday morning, I was a BRCA+ woman who was going to have a double mastectomy. By Friday afternoon, I was a BRCA+ who'd had a double mastectomy. I went from theoretical to actual in just four brief hours (hours that I was unconscious). And I'm having a really hard time reconciling my new identity. On Wenesday, G and I went to buy a post surgery bra at Nordstrom (I recommend the Natori sport bra, for those in the market for such things). I knew what I was looking for but couldn't find it, so I approached the sales woman at the register of the lingerie department and said, "I just had a double mastectomy and need to buy a bra." And then I sort of froze; that was the first time I'd said it out loud. It sounded so weird, so unbelievable. I just had a what? A double mastectomy? You've got to be kidding! You didn't even have breast cancer! Whaddya crazy?

And it's funny because before my surgery, I was so angry when people would question my choice, probe deeper into why I'd chosen something so radical to prevent a disease I might never get. And now, at least temporarily, I hope, it seems like I'm one of those people. What'd you do that for? You must a lunatic! And that's what's making me sad. I can't quite get my head around the fact that I've done this. It's not that I regret my choice; it's that now I have to learn to live with it.

Sometime last week, which day I cannot recall since they all seem the same, my family and watched a BBC program called "How to Look Good Naked." The woman featured was a young Brit who'd battled breast cancer and had a mastectomy (without reconstruction); she wasn't comfortable in her new body, and the show was designed to rebuild her confidence. She was a sympathetic subject. Poor girl! She'd had breast cancer! And so young! And to lose her breast like that! So tragic! As I watched the show, a lump grew in my throat; she'd had a mastectomy, I'd had a mastectomy. Whoa. If I could have gotten up off the couch without assistance, I would have run to my bedroom and burst into tears. Instead, I sat there and tried to process my feelings. I realized I'd joined a club I never intended to be a part of. From this moment on, I'd never not be a woman who'd had a mastectomy. Even many years from now, when I'm over it and I've healed and I've gotten used to my new bosom, I'll still always be a woman who's had a mastectomy. That's when the permanence of my choice struck me. There was no undo. I'd been changed, and there was no going back.

And maybe that's why some people don't go there. They figure, what's the point of tears? They won't bring my boobs back. So forget that and look on the bright side. And, hey, I'm an optimist, so I totally understand that impulse. It's hard to acknowledge any negatives at all, especially when you feel so persecuted for your choice. It's like doing so gives the doubters fodder. But I think I would derail my recovery if I didn't acknowledge this. I'm not going to put my finger in my ears and say "LALALALALA I can't hear you." I don't think I can heal fully if I avoid the ugly and unexpected emotions of my post-surgery life. That's why I don't want to bury my head in the sand now. I need to get this out: I'm sad.

Now I want to be clear. I'm so glad I had this surgery. I would do it again tomorrow. I could not live my life with the threat of cancer looming over me, never knowing when or if it was going to strike. And I couldn't live a minute longer with the crushing anxiety that had so consumed me in the last few weeks and months. So it's not that I wish I could go back and do it differently. It's that, just as coming to terms with being BRCA+ took a lot of hard work over many months, so too will I have to work hard to come to terms with being a woman who gave up her natural breasts. This entire process has been about adapting to new identities, and I trust that in time I will learn to accept my post-surgery self. But I'd be lying if I said everything is puppy dogs and rainbows on the other side of surgery. Now that the initial elation of simply being alive has ebbed, I'm left with some pretty complicated emotions I've got to work through.

I envy those women that say, Nope, never gave it a second thought, nothing but totally thrilled to have gotten rid of my breasts. But I am not one of those women. And I hope, if nothing else, this blog has proved I'm not afraid to tell it like it is, even if it's ugly, so take this not as a caution to women considering this surgery -- I am not saying don't do it (in fact, I'd still say, do it, sister!) -- but as gentle, completely honest advice: when you are emptying your drains, cleaning your incisions, or applying your gauze, don't forget to stop and attend to your emotional wounds too. They may be deep or there may not be any at all. But don't ignore them for fear of appearing weak or fickle. Acknowledge them and work through them. And in time, they will heal, too.

My physical healing will take months; the psychic healing could take much longer. But I'm confident I will recovery fully in both areas. But no matter what, I'd rather battle a little postpartum blues (or maybe it's PTSD?) than cancer. So as long as I keep that in mind, I know I'll come out of this OK. And you will, too.

Have Yourself a Very Mammary Christmas

2009-12-24T11:44:00.000-08:00

'Twas the day before Christmas, and I'm stuck in bed, while pain-killer induced visions dance in my head.

It's been nearly a week since my surgery, but the days have simply melted into one another. I've left the house only once since I got back from the hospital on Sunday (and then only to see my doctor), and I've been sleeping a lot. The first few days back from the hospital were easier, for whatever reason, than the last few: when I last updated this blog, I was imagining going for walks, to the movies, out to dinner; now all of that makes me panic. I've been rather nauseous lately, and I haven't had much of an appetite, so dinners are out. And the painkillers--though a gift from baby Jebus himself--have made me dull-witted (I'm really struggling to compose this, as the words that normally come so easily seem so far out of reach right now), irritable, and unable to concentrate. I need them, of course, because I am in pain: I feel like I have two bowling balls stapled to my chest. But they are making me feel less and less like myself.

Well, in the spirit of Christmas, how about a little gift? The gift of all the gory details about my surgery. Since many of you have asked what exactly I had done, here is a little medical lesson. Think of it as everything you wanted to know about my surgery but were afraid to ask (and maybe even some stuff you didn't want to know). So what exactly did I voluntarily subject myself to last Friday? The technical term is a one-step direct-to-implant skin-sparring nipple-sparing prophylactic bilateral mastectomy. In English, that means that I had both breasts removed as a preventative measure; the doctors scooped out everything inside, but I kept my own nipples (this is an option that many women in my position decide against: the research indicates that keeping nipples--which are, of course, breast tissue--does not significantly increase risk of developing cancer there and improves both aesthetic and psychological outcomes, but many women figure if they are going this far, they might as well go all the way. I chose to keep mine because I knew it would help me greatly to be able to look down at my new breasts and recognize them as still my own. And it has. I don't really feel like I've had my breasts removed at all. It's like I had them replaced; different stuffing, same envelope. And furthermore, if, by some freak occurrence cancer did manifest in my nipples (it is still possible to get breast cancer, even if you have next to no breast tissue), it would be easily detected.). During the mastectomy, the breast surgeon tested the tissue he extracted for any abnormalities; it was possible that I could have had cancerous growths developing in my breasts unbeknownst to me, and, in such a case, I would have awoken without the nipples I had hoped to keep (especially if the tumor was near the nipple). Luckily, the tissue was clear and I got to keep my nipples. (And further tests on the tissue by the pathology lab revealed that indeed, I was completely cancer free. I got the all clear! I dodged the bullet completely. I am a true previvor.)

Once the breast surgeon was through with his portion of the surgery (which, I understand, in my case lasted about an hour), the plastic surgeon began reconstructing my breasts. Easy go, easy come, right? I have to admit that there is no way I would have ever considered this preventative surgery if not for the option of reconstruction. When my grandmother had breast cancer in the 1980s, she had a radical mastectomy, and back then, they took it all: tissue, muscle, skin, nipple. She was left concave, maimed, deformed. And when I first heard that a treatment option for women with the BRCA mutation was a double mastectomy, I recoiled at the idea of looking like my grandmother. Well, and forgive the cliche, but I'm too addled by painkillers to come up with anything more creative: this isn't your grandmother's mastectomy. In fact, when it's all said and done, I'll have more in common with, say, Pamela Anderson than my grandmother. In a society that values overinflated, unnatural bosoms, I'll have exactly what we deem attractive and youthful.

There are, I think, about two dozen different reconstruction options available today, but for ease of discussion, it is useful to think of them falling into two categories: tissue transplants or breast implants. For the former, your own body tissue, from your stomach, back, or ass, is transferred and reconfigured into breasts (this is great if you husband is an ass man, because now he'll have tits made of ass. Budump-ching! I'll be here all week. Don't forget to tip your waiters.). This surgery has both pros (it's permanent, it's you, it looks more natural) and cons (it's extremely painful and the recovery time is significantly longer), but I decided early on it wasn't right for me. The truth is, I'll need to have a revision at some point down the line (implants don't last forever) and I might consider it then; but for now, tissue transfer was just way too scary. So I chose to get implants. It's still strange to type those words since I never in my life thought I'd ever be in the market for breast implants. But this is a little different than cosmetic surgery, and a little more is at stake, so I'm cool with it (though it took me a while to accept). There are two options when it comes to implant surgery, as well: one-step or two-step. The latter is the more traditional approach: after the breast tissue is removed, an inflatable tissue expander is placed beneath the chest muscle; after surgery, a women wakes up with about an A cup. Over the course of weeks and months, that expander is gradually filled with saline, stretching the muscle so as to accommodate a permanent implant. Not to offend the many women who have chosen this method, but it sounds like pure torture to me, not to mention frustratingly slow (the whole reconstruction process takes months), and I was sure there had to be a better way. There was, luckily, and that's what I chose: the one-step procedure allows for immediate implant placement. During surgery, the pectoral muscle is cut and a pocket is created with Alloderm (which I wrote about here); the implant in placed behind the muscle and in the pocket and the reconstruction is complete. Because I chose this type of surgery, I woke up with breasts, misshapen and square though they might be, and I am so glad, from an emotional level, that I decided to go with this reconstruction; it's been a lot easier dealing with all of the emotions and questions and doubts that arise after (yes, after) surgery because I really don't feel all that different. I look pretty much the same as I always have and my breasts still seem like my own, even if, in reality, they are gone.

So, what am I to expect as I recover? As the muscle loosens and my implants settle, my square boobs will become more round. The incisions are under my breasts, so once my new boobs fall into place, you won't even be able to see the scars. So sometime pretty soon, I'll look like nothing really happened at all. And that's exactly what I want. On the downside, I have almost no skin sensation (although I still have more than I expected. I can feel my sternum and around the base of my breasts) and no nipple sensation at all. And this is unlikely to change. The nerves have been cut and damaged, and it's pretty much a dead zone across my chest. But all of that is a small price to pay for the peace of mind I gain, the certainty that I've beat the odds, no matter the extraordinary measures I had to go to do so.

My family is visiting through Sunday (they arrived the night before the surgery) and they keep asking if there is anything else I want for Christmas. But, I tell them, I already got everything I wanted: I made it through surgery and my pathology report came back clean. I couldn't ask for anything more.

Merry Christmas to all!

Greetings from the other side

2009-12-21T20:53:00.000-08:00

I’m alive!

And feel fine. Seriously. On Thursday night I said to G that my sincerest wish was that when we were through this surgery, we could both look back and say, “That was no big deal.” And so far, even though it’s only been a few days, I feel I can confidently say, “That was nothing.”

My surgery took place at 7:30 a.m. on Friday. We arrived at the hospital a little after six and checked in. I was given a hospital gown, a hair net, slipper socks, and some funny hose that help prevent blood clots. A nurse came in to take my vitals and several research assistants had me fill out paperwork for studies I’d agreed to be a part of. My mom scratched my back like she used to do when I was a kid, and I cuddled on the little hospital bed with G, wrapping myself around him so tight, embracing and nuzzling and burrowing. And then a “transfer nurse” (so-called because he’d be transferring me into surgery) appeared in the doorway and told me it was time. It is in moments like these that you realize your entire frame of reference for how to act in such situations comes from television and film. I expected an orchestral swell of sentimental music, a cut to slow-mo, a shining tear descending languidly down my husband’s cheek. But no. I hugged everyone goodbye (G got two hugs and a couple extra kisses) and I walked down the hall with my nurse, into the surgical unit, and laid down on a gurney.

I wasn’t particularly nervous yet, mostly because the whole set-up seemed so unreal. The week prior to surgery-—when I thought for sure I’d go on crying jags and descend in to fits of panic—-I was eerily calm, resigned almost to my fate. And that’s how I felt as I stared up at the lights and tried to memorize the pattern on the curtain separating me from the patient across the way who, I overheard, was having some kind of endoscopic procedure. There was no turning back now. This was really going to happen. Might as well just accept it.

Both my doctors stopped by, and Dr. F, my plastic surgeon, drew on me with a cold black pen. He asked if I had any questions, and I said no, because honestly, the only one I had left—-“Am I going to be OK?”—-was the only one he couldn’t answer. Then the anesthesiologist dropped in and gave me something to calm my nerves. Now, this had been described to me as the chemical equivalent of a “cool glass of California white,” which, at 7 in the morning and on an empty stomach, should have given me quite a buzz, but it didn't do too much for me. By the time they pushed me on my gurney into the operating room—-again, lights whizzing by overhead, a view I have seen only in movies-—I wanted to call attention to the fact that I was far too alert and awake to possibly be put under any time soon. An oxygen mask appeared, hovering before my face. I was asked by a disembodied voice to breathe deeply. And that was it.

I woke up in recovery seemingly seconds later. In reality, about four hours had passed, but I was unaware of the forward march of time. I was in and out of consciousness and was bitchslapped by a debilitating wave of nausea—-but I didn’t puke, mostly because my body was still waking up from the anesthetic and I couldn’t wretch properly. And then, more wheeling, more lights overhead. My mom, my husband, my father, waiting in my hospital room. I made it.

I cried. Waves of sobs, tears of joy. I was so happy to be done, to be alive, to be on the other side of surgery. Nothing else mattered--not the fogginess in my brain, the myriad tubes protruding from my body, the disorientation or the lingering wooziness. The thing that I feared the most, that I wouldn’t live to see life on the other side of this fear of surgery, or this fear of disease—-it was gone. I was alive.

The rest of Friday was a blur. My friend A-—she of boob voyage planning fame-—came and sat with Gabe while my parents went back to their hotel to rest. I was in and out of coherence and consciousness, occasionally talking in my sleep (much to my embarrassment). In addition to the oral medication I was on, I was hooked up to a pain pump and had some sort of numbing agent threaded directly into my incision site. I was also catheterized, which was good, because I was so thirsty, I would have had to get up every few minutes to use the bathroom (in fact, I recall somewhere in my haze, a male nurse tech exclaiming he had never seen a more filled catheter tank. That’s me: a good pee-er.). But sometime in the early evening, my skin began to crawl. It was an itch like I had never felt before, a lily-pod hopping frog of an itch that moved somewhere else on my body, from my calf to my forehead and back, the moment I could reach it. I had both G and A clawing at my back, but nothing is more ineffective—-or frustrating—-than trying to describe the location of an itch or the intensity with which you want to be scratched. The nurses seemed baffled—-though it is clear to me I was having some kind of reaction to the pain medication or anesthetic—-and they offered me only doses of Benadryl in ever increasing amounts despite its ineffectiveness. Before bed, I finally got some relief, thanks to some kind of antihistamine whose name escapes me, and was able to sleep relatively well that first night.

I was awoken at quarter to six by my surgeon who appeared, like a holy vision, the light from the hall ensconcing him, at the foot of my bed. G had spent the night with me on my cot, and Dr. F had to maneuver around him in the small room, but he managed a look at my chest and declared everything to be—-bumpy and bruised as it looked from my vantage point—-as it should. Saturday passed inconsistently—-the time seeming to slow and quicken, a strange sort of painkiller-induced elasticity that made the second hand on the old-fashioned wall clock rotate at uneven speeds. G fell sick later that day with a stomach bug, and though he wanted to be there with me, we decided my dad would sit vigil while he got some rest. I read trashy magazines, flipped channels, entertained visitors, and learned to get in and out of bed (goodbye catheter, my old friend).

I was discharged Sunday afternoon and am writing from home, from my bed, surrounded by cats and pillows. I feel fine, incredibly. In fact, when I spoke to my doctor’s nurse this morning, I asked her if something was wrong because I don’t feel as bad as I thought I would. In fact, nothing, thus far, has been as bad as I thought it would. And dare I say it, because to anyone else, they are mutilated, misshapen, multi-colored monstrosities, but my new boobs even look better than I expected.

Today, I’ve felt a few pangs of, not regret, per se, but melancholia perhaps: the letdown after the great climax. I’m done. Now what? What do I do with all that anxiety? Where does it all go? I’m sure I’ll experience some highs and lows in the next weeks (not to mention months and years), and that’s to be expected. But despite all that, I am happy, so very, very happy to be on the other side, alive, recovering, and very lucky to have this second chance at a healthy life.

A Break Up Letter to My Boobs

2009-12-16T21:14:00.000-08:00

Dear breasts,

I wish I could start off this letter with something like, “There comes a time in every woman’s life when she has to say goodbye to her boobs…” (and the fact that I feel that way attests to the inevitability of this moment for me), but unfortunately, this is far from routine, and we are both about to enter uncharted territory. The truth is, no woman ever expects to have to do what I’m about to do to you; for most, breasts are sources of pleasure – both physical and emotional – dispensers of nourishment, symbols of femininity. But to me, you’ve become something else, something more sinister. You have the potential to kill me, and because of that, I’m afraid I’m going to have to kill you first.

But first, an apology. I’m sorry I have to do this. I never thought it would end like this. In fact, nothing about our time together has been quite what I expected. But here we are, spending our last few hours in each other’s company: me, woman about to embark on a life free from the specter of breast cancer, and you, two dead boobs dangling. I know this is probably hard to understand, but what I’m doing is what’s best for both of us. And like a love affair that’s lost its passion, we should end things now, when we’re still on speaking terms, before we start throwing plates, when we can still remember the good times, before we learn to hate.

And we sure have shared some good times. Remember the first time I bared you to the bright sun? The tide had gone out at Mont St. Michel in France, and, alone with my friends, two other teenage girls in a deserted expanse of sand and sun, we doffed our bikini tops and tanned like the French do. I was only 15, and K and J, though my peers, seemed so much more like women than I was at the time. You barely filled out an A cup back then. And you had never been propped up by underwires.

But even back then, back before you grew into the womanly, pendulous mounds you are today, you had been touched. And the electricity I felt from so simple a feel! Second base. We’d rounded it. And I began to understand the fascination with you – boys’ eagerness to see and cup, my desire for their touch. But yet, I was painfully shy, almost ashamed of you, incredulous that anyone would find you – my little mosquito bites – worth their affection. Even into my twenties, I often made love with my shirt on, embarrassed to expose you so directly to someone else’s glare. On particularly uninhibited occasions, I’d let you hang free: that time I vacuumed the beach house completely naked, that time I took you drunkenly swimming with some Frenchmen in the Riviera. But for the most part, you were a guarded secret.

Something happened while I was busy protecting you, though. You changed. You swelled into something I could hardly recognize as belonging to me. Suddenly, you required a bra – and not one just for show, so the boys could snap my strap, like they did at summer camp in seventh grade. And as you became more like the breasts I always wanted, I grew more comfortable with you. The more hands that touched you, the more comfortable I felt allowing myself to be felt. And gradually, as my body matured, I grew to love you – you who I once distrusted, for not showing up until so much later than the other girls whose breasts I saw in the locker room after field hockey practice in middle school, for not being big enough to hold a tube of lipstick between like Molly Ringwald in The Breakfast Club, for not being enough handfuls for curious male hands whose disappointment I sensed between sloppy teenage tongue kisses.

You’ve existed in your present form -- ample, worthy of adulation –- for only about ten years or so. And so, in saying goodbye to you now, I can’t help but feel cheated out of time together that was rightfully ours. Just when things were going great, it all had to come crashing down. But at least I’ll always have the memories, the moments in time when I was proud, when I felt beautiful, because of you.

And I will still be beautiful without you. It may take some getting used to, but I spent most of my life getting comfortable with you anyway. And your replacements –- I’m sorry to be so crass, but let’s be honest –- will be, in many ways, far superior (not the least because they won’t try to kill me). But I’d be terribly untruthful if I said I wasn’t going to miss you. Sure, we’ve had a vexed relationship. I can remember so clearly standing in front of my bathroom mirror, a prepubescent girl staring at her bony, naked frame, and wondering where you were, wondering if there was something wrong with me, wondering if I was a boy, or at least destined to be built like one. And just the other night, I stared at you again, thinking you ugly, uneven, udderlike. But at both those moments, separated by decades, you and I, despite our adversarial stance, were one. And after Friday, we’ll be apart, forever.

You haven’t done anything wrong. But I can’t truthfully say, “It’s not you, it’s me.” Because it is you, or at least what you could do to me, that is causing me to make this choice. But it’s also me. I can’t live my life in fear of you a second longer. We have to break up. I just don’t see this as a long term relationship. You just aren’t healthy for me.

So goodbye my old friends. May the joy you’ve brought into my life and others’ live on long after you have gone. I wish it didn’t have to be like this, but you’ve left me no other choice. As we part, however, I know I’m a better, fuller person today than I was all those years ago, so meek, so desperate for affirmation. And I’m confident enough with who I am as a woman that I can live without you. I don’t need you anymore. Thanks for the mammaries.

Ta-ta,
Steph

How to Say Goodbye to Boobs

2009-12-15T09:51:00.000-08:00

1) Throw them a party

My boob voyage, or as A, my dear friend and budding party-planner/pop artist who hosted the event for me, called it, The Pointer Sisters Farewell Tour (The Pointer Sisters being the pet name my husband gave my boobs), took place Sunday night. It was a blast; I felt so lucky to have my friends come together to support me. We ate, drank, and played games, including "Pin the pasty on the nip" (pictured above). I received several sets of button down pajamas (fashion be damned) and lots of good wishes. And I got a chance to remind everyone that after all of this, I'm going to be the same person I always was; after all, I'm having my breasts removed, not my sense of humor. The pasty-adorned breast is now hanging in my living room.

2) Photograph them

Last night, I spent a few hours (most of them topless) in the studio with a very talented photographer, whom I met when she shot my wedding. R is a genius behind the lens, and I've never looked better than in the photographs she took of me on my wedding day (though, maybe the professional makeup and designer gown helped). So when I decided to memorialize my mammaries before the old chop chop, I reached out to her, unsure of whether she'd be offended by my request (I can't tell you how many times I wrote and rewrote the email in order to ask, essentially, "So, do you do topless?") or the entire prospect of surgery. But, astonishingly, R not only agreed to do it, she shared with me the story of her grandmother; she developed breast cancer in her 40s nearly fifty years ago and instead of following the recommended course of action -- a lumpectomy -- opted instead to remove her entire breast. R's grandmother will be 90 soon, and she thinks her radical choice saved her life. (That's one brave woman.) So R really got it.

Anyone who knows me well knows that I have a major affection (OK... call it like it is: an obsession) with America's Next Top Model. I routinely have dreams I'm a contestant on the show (which usually involve me expressing some level of incredulity to Tyra about the fact that I'm a) 31 and b) a little too zaftig). But let me tell you, all those hours of mindless entertainment actually came in very handy during my photo shoot. I used all of Tyra's tricks. Smile with my eyes? Just call me Super Smize. Booty tooch? Check. Modeling head to toe? Girl, you know. And after about 30 seconds, it didn't really even register I wasn't wearing a shirt. When R was setting up a shot, she said, "Give me a second, I'm focusing on your eyes." And I said, "Actually, this is the one time where it's OK for you to focusing down here, you know?" Throughout, R was a consummate profession, a skilled director who helped me contort my body into more flattering poses (and positioned lights in order to slim and sculpt), and a reassuring presence who told me over and over again that I was beautiful.

I can't wait to see the pictures. And no, I will NOT be posting them here. These are for me. To remember how I was once. To celebrate the good times. To look forward to the better times ahead.

3) Preserve them in plaster

I ordered a belly-casting kit (you know, the papier-maiche kits that are all the rage at baby showers) but will be using it for a different purpose: I'm going to make a cast of my bust. Not sure what I'll do with it (though perhaps it will go nicely with my pop-art living room boob painting), but I want to cover all my bases (second bases?). I figure this would be a fun/messy activity for G to help me with. After all, he needs to say goodbye to them, too.

4) Write them an ode

Well, this blog has been, in many ways, a love/hate letter to my breasts, but I'm working on one final tribute. Stay tuned for more...

The End is Nigh

2009-12-08T09:54:00.000-08:00

Ten days till tits-off. And I feel fine.

Yesterday morning, G and I met with one of my plastic surgeon's nurses, who embodied the adjective chipper, and learned all about life after boobs. It will look like this: I'll have plastic tubes sewn into my arm pippies that will drain me from the inside out, which G will have to occasionally unclog as well as measure my output on a daily puss/blood/strange tissue bits log (Brief pause to recognize G's heroic dedication to the cause. He definitely didn't realize her was in for this when he agreed to those wedding vows last year.). My body may be in pain, but I will be sailing off to Darvocet island and lulled to slumber by the Ambien string quartet. I won't be able to raise my arms, so we'll have to get an old person's stool for the shower so I can sit whilst I bathe. And though I'll probably feel euphoric, energetic, and rarin' to go in just a few days, I'll have the endurance of one of those fainting goats, and will need to be near horizontal surfaces in case of unexpected naps.

And then, supposedly, life will go back to normal. And the only thing different will be that instead of boobs, I'll have silicone spheres sewn into my body in such a way that, to the causal observer, it will appear as though nothing is amiss.

But first, there's these next ten days to get through. And they are shaping up to be busy enough to distract me from thinking too much about this strange end to this bizarre journey I'm on. On Sunday, my dear friend A is hosting a Boob Voyage party. On Monday, I'm working with my wedding photographer (through whose lens I've never looked better) to take some tasteful photos (I'm imagining a lot of draping) of my décolletage. And then my family arrives Thursday and before you know it, I'm walking down the hospital corridor, laying down on the gurney, and going to sleep. Then, I'll wake up, and my life will be different, a little harder for a little while, but ultimately better, because I won't have to think about this any more, count the days, imagine the worst case scenarios, doubt my choices. I'm so glad it's almost over.

Everything Good For You Is Bad for You, Or, Everything Bad For You Is Good For You, Or, FML

2009-12-03T10:42:00.000-08:00

Here is the thing about cancer. Many things cause it. And many things prevent it. But there is a surprising overlap in the things that both cause and prevent cancer. Alcohol? Everyone knows that that's bad for you. But, wait. Alcohol can also prevent cancer? You betcha! Becoming a mother late in life causes cancer. But, um, er, it also prevents it. Cell phones definitely cause cancer. Except when they don't. And my personal fave (because I ingest more of it than the average bear), soy causes and does not cause cancer. (In fact, here is a handy guide--called Kill or Cure?--to all the things that allegedly cause or prevent, or sometimes do both simultaneously, cancer, as reported in London's Daily Mail newspaper.)

Now mammograms, those critical diagnostic tests that I so emotionally lobbied for access to, are on the shit list. According to the New York Times, "For young women who have a high risk of breast cancer because of genetic mutations or family history, the radiation from yearly mammograms may make the risk even higher." So, wait. Let me get this straight. You're telling me that the test I would need (were I not undergoing prophylactic surgery) to save my life could actually kill me? Yep. According to the Times, "The report is particularly troubling because it suggests that the very women who are told they need mammograms most may also be the most vulnerable to harm from them." Troubling? Understatement of the year.

All of this serves to illustrate my general point: we're damned if we do, damned if we don't. As a carrier of the breast cancer gene, I have two basic options: closely monitor my breasts or cut them off. The first option presupposes the safety of the very screening techniques that would, theoretically, find any cancer at a curable stage; but what happens when all that screening actually contributes to, and possibly causes, the cancer it's supposed to find? In making my decision to have surgery, I had to weigh the heavy physical toll of altering my body against the heavy emotional toll of uncertainty and anxiety. And I found that, for me at least, I'd rather suffer brief physical pain (followed by emotional peace) than live a life in existential turmoil. Furthermore, I came to realize that the surveillance techniques available to me were not foolproof (and now, apparently, they aren't even safe) and that in order to definitely reduce my risk, I'd have to have surgery.

That surgery is now 15 days away. And the choice that brought me to this point, I'm beginning to realize, is more and more impossible. I was flipping through a book on the checkout counter of Urban Outfitters last night called Would You Rather, featuring absurd questions like "Would you rather fight Mike Tyson or talk like him?" And it's funny because we can think, "Man, it would suck to either fight or talk like Mike Tyson, so how about neither," chuckle, and then close the book. But when you are facing your own version of this--"Would you rather live you life in fear of developing breast cancer, which you have a 90% chance of getting, or cut off your breasts to lower your risk to less than 5%?"--we can't say, "Sucks to be that woman," because we are than woman. But our choice is so comically absurd, our dilemma so strange, when we make a decision, we're fucked either way. Life isn't going to be all rainbows and puppy dogs and champagne after my surgery: I'm not going to have boobs anymore. But if I were to keep my boobs, life wouldn't be rainbow-puppy dog-champagne-filled, either. It would be filled with worry and tests and worry about those tests. The point is, whatever the choice, you get things and you give things up. Either way, your life is irrevocably changed.

Given these latest findings, I'm glad I'm having surgery. But I'm dreading the study that comes out and suggests that PBMs, which we all know should prevent cancer, actually cause it. Hopefully that'll never happen. But given the precedent, it probably will. FML

Movin' On Up

2009-11-30T18:56:00.001-08:00

Well, I did it. I'm a homeowner. After months of delays and setbacks, my husband and I closed on our first condo earlier this month and moved in this weekend. And just in the nick of time: my boobs are on the endangered species list -- they have only two and a half weeks to live! I have been so comically busy the last month or so (I was traveling seemingly constantly, and when I had a moment to spare, I was packing) that I haven't had much time to dwell on the surgery. But now that we're finally in our new place (but by no means settled... I find it a personal triumph that I went to work clothed today, wearing matching shoes even. I can't find anything in our new house, including my sanity), I find myself not so much relieved as I am disoriented.

After our first night in our new condo, I turned to G and said, "Doesn't it feel like we're squatting in someone else's place? Unpacking our dishes in someone else's kitchen? Sleeping on someone else's king-sized bed? Admiring someone else's new furniture?" Because our new home doesn't quite feel like it's ours quite yet, nor does it feel like home. And I know it will take some getting used to. And I know it will come in time. But instead of a euphoria that comes with accomplishing a major goal, I feel a little melancholy. And I think it's a preview of what's to come. Because buying this house and having this mastectomy are both things I really, really want (I know that sounds strange saying that about surgery, but it's true; I'm SO ready for this. I'm SO ready to get it over with and get on with it) but they are events that completely change your life. And with that change comes a little nostalgia for the way things were, because even if things are better now, they're still different.

Here's the thing about our old apartment: it was a dump. The heating barely worked, the water pressure was inconsistent, the floors squeaked, and the back porch sagged precariously. There was no A/C, no dishwasher, no washer or dryer, no luxuries beyond basic amenities. When I moved into that apartment, I was just out of college, barely making more money than I now pay in taxes. It was definitely time to move on. But at the same time, that dump was my home for nearly eight years. My husband proposed to me in our living room. I felt safe, comfortable, and most of all, happy there.

Our new place is stunning. It has floor-to-ceiling windows that face out onto Lake Michigan. We have granite counter tops, marble sinks, a soaking tub, central heat and air, in-unit washer dryer, a dishwasher, and a balcony on which we'll sit on hot summer nights. It has everything I wanted in a house and more. But as wonderful as it is, it's just so different.

And here's the thing about my boobs: they're going to try to kill me. They're fundamentally flawed: they can't stop tumors from growing, and once they go bad, they're likely to try to kill me over and over again, until they do. If my boobs were a consumer good, they'd be subject to a recall: they are dangerous, and they pose a threat to my well-being. But at the same time, these boobs are all I've ever known. They are a part of me, literally. They fill out a sweater nicely and look fabulous in a bikini. They have many fans, and they will be sincerely missed.

My new boobs will be stunning. They will be slightly bigger, less droopy, and more symmetrical. They will be so perky, in fact, that I'll never need to wear a bra again, because they'll support themselves. And best of all, they won't try to kill me anymore. They'll be everything my natural boobs aren't. But as wonderful as all that is, it's just going to be so different.

You see where I'm going with this. And perhaps I'm over-dramatizing moving or oversimplifying surgery by suggesting they resemble each other in any way. But to me, they are remarkably alike. I had a moment when I was unpacking the dishes when I thought to myself, "What if this is a big mistake?" And I was both terrified and comforted by the fact that, even if it was, there was nothing I could do about it now. The papers were signed. There was no turning back. And that's probably how I'll feel sometime after my surgery. And they'll be nothing I can do about it once it's done: you can't sew your boobs back on, and they certainly don't grow back. It's a permanent change, and one to which I'll acclimate slowly, just like we're slowly settling in to our new house. It's all about reaching a new normal.

This has been a big year for me. This is the year I learned I carried the breast cancer gene, the year I bought my first house, the year I voluntarily gave up my boobs. And with all this momentous changes comes anxiety, excitement, and, yes, some relief. And now that I'm so close to the finish line, I can that life on the other side will be better -- whether it's in my new house or in my new boobs -- but it's going to take some getting used to.

Ma'am, I'm going to need to see some ID

2009-11-19T08:11:00.000-08:00

If you follow boob news (and who doesn't?), you've undoubtedly heard about the new recommendations for mammography issued by a government task force that up the age of first screening to 50 from 40 and reduce the frequency to every two years from one. The response, at least from my vantage point, has been swift and angry. Many organizations, such as the American Cancer Society and The American College of Obstetricians and Gynecologists, have spoken out against the new guidelines, and respected cancer treatment centers, including the Mayo Clinic and M.D. Anderson, according to this article, will not be be adopting the task force's recommendations. On the other hand, well-known breast surgeon Dr. Susan Love commended the panels findings on her blog (and was quickly excoriated by commenters). One voice missing from this debate, as you've likely noticed, is mine. The long, harrowing wait for my opinion is now over: I think this proposed change could be fatal for young women, especially BRCA mutation carriers who are unaware of their status.

Here's the thing about BRCA mutations. Most women don't learn they have a mutation because they've been tested; most women learn they have a mutation because they have cancer (and then get tested). I can't find any figures to confirm this, so I take full responsibility if this assumption is incorrect. But I don't think it is. I mean, how does anyone realize they might be at "high-risk" (a population, it should be noted, that is exempt from these guidelines--but more on that in a moment)? They watch the women around them fall victim to various cancers. And then an astute oncologist will suggest a hereditary correlation and order gene testing. And then, once they have that information, that they and the women before them who got sick were mutation carriers, they can begin their screenings and preventative measures.

But here's the thing. It doesn't always work out like that. After all, "high-risk" women are a self-identified group. You can't be considered high-risk by the medical community unless you have someone in your immediate family who has had breast cancer. Guess who doesn't have breast cancer (except for my paternal grandmother, whose cancer was postmenopausal and therefore unlikely to be caused by a mutation) in her immediate family? ME. I don't. And so, if I didn't know that I was a mutation carrier, I would not be considered high risk. And I wouldn't be able to get a mammogram. And I might get breast cancer while they weren't looking for it. And I might die.

As I've written before, I inherited my mutation from my father, who inherited it from his father. In our immediate branch of our family tree, there are no obvious signs of hereditary cancer, mostly because there have been no women for it to manifest in (my grandfather had two sons, my father and uncle, and I'm the oldest of their children, three of whom are women). I would be the first. Now, imagine that my father was a different person, someone who wasn't in touch with his extended family; the mutation was discovered by one of his cousins, so if he wasn't in touch with that part of the family (and many families don't have the kind of remarkably open lines of communication we do), we would never know. Again, imagine my father was a different person, someone who, even knowing that there was a genetic mutation somewhere in our bloodline that was causing cancer, he decided he'd rather not know; if he decided not to test, or decided to spare me from the anxiety a BRCA positive result might cause, I would never have known I had the potential to carry the mutation. There are so many what-ifs here (and luckily for me, all of them are hypothetical) but they demonstrate something indisputable: I would not be considered high risk if I was not known to be a mutation carrier. And, according to the new guidelines, I would not be screened for breast cancer until I turned 50. By which time, I shudder to think, it might be too late. And that's what scares me most about these recommendations. According to the New York Times, the new screening guidelines do "not apply to a small group of women with unusual risk factors for breast cancer." But how does a woman know if she qualifies to join our elite cohort? If she's like me, she wouldn't know. And that's terrifying.

But the panel's recommendations raise another question. After all, not only is it changing the guidelines for mammography, it is recommending against the teaching breast self-examination. So if mammograms are unnecessary and self-exams are ineffective, then how do you screen for breast cancer? The answer (which I don't have) seems to be missing from the debate. Upon hearing the news of Tuesday, my first inclination was to think anecdotally about all the women under the age of 50 I know who have been diagnosed with breast cancer and how they discovered it. Every single one either found it on a "routine" mammogram or during a self-exam. So if that's the way we find breast cancers in young women, and those methods are now being rejected, how will young women find their cancers? (The cynic in me suspects they'll find them after they've entered the lymph system and migrated to another organ, after which their "breast" cancers are no longer considered curable.)

I've had two mammograms in my life. The first, about a year ago, I literally cried my way into. I was at the very beginning of this journey and didn't speak the language or understand the mutation the way I do now. My insurance wouldn't cover the gene test (my father had not yet been tested), and I was consumed by anxiety. So I got my internist to write a script for a mammogram. I didn't even care if insurance would cover it or not; I just wanted to get screened. On the morning of my appointment, I was called up to the reception desk and told I was too young to receive care. I welled up and protested, "But the women in my family are getting breast cancer and dying!" I got my mammogram. The second was this spring, after an MRI turned up suspicious changes in my left breast. The mammogram and ultrasound came up clear, and I was given a clean bill of health. And those are the only two mammograms I'll ever have. After my surgery next month, there won't be any breast tissue left to screen.

So on a number of levels, these recommendations do not apply to me. But they still affect me, especially on an emotional level. I never cease to marvel at the fact that I am a mutation carrier and had the opportunity to learn my genetic destiny before I got sick. After all, unlike many of my peers in the BRCA community, I did watch the women around me fall sick; I did not grow up somehow knowing I would someday share their fate. I had, until last year, little reason to suspect I was at high-risk for breast cancer. That was something that happened to someone else. Except that someone else turned out to be me. (The legacy of this is that sometimes, I have moments, sometimes in the middle of a conversation with another mutation carrier, where I almost step outside myself and think "This isn't happening to you. It can't be. What on earth are you talking about? You don't have the breast cancer gene! How could you? That person you are talking to is going to be very upset when she realizes you're a fraud. What are you doing associating with this tragic group of people? You don't belong here!" But the truth is I do. I just have a hard time reconciling the massive shift in my life view since learning I'm a mutation carrier. Sometimes, I just can't believe this is happening to me.) The fact that I know I'm high-risk is a minor miracle to me. I can't help but worry that these new recommendations will have a devastating, and fatal, impact on women who aren't as lucky as I am.

Essentialism and breast reconstruction

2009-11-13T08:25:00.000-08:00

Next month, when I go in for my prophylactic bilateral mastectomy, my breasts will be reconstructed with the help of silicone implants and something called Alloderm. Because the implant will be placed behind it, my pectoral muscle must be cut and extended to accommodate the implant; the Alloderm creates a pocket to hold the implant in place and eventually bonds with my own tissue.

So far, so good. (Maybe a little gory, but simple enough.) But what exactly is this magical Alloderm? Well, it's tissue. Human tissue. From cadavers. (Pause for everyone reading this to shudder.) Now, before proceeding, a word about marketing: I'm in the business of bullshitting, and Alloderm is in desperate need of better PR. Sure, the brand name is nice and sanitized, but why would anyone, ever, willingly associate their product with the word "cadaver"? Cadavers conjure decay and, of course, imply death. Why not just say it's donor tissue? Which it is. From a dead donor. But nonetheless, you see my point. Like most of you reading this, I'm not totally cool with this; it gives me the heejeebees. But why? Obviously, I'm not thrilled with the idea of a cadaver, or any part of one, coming into contact with my body, let alone being purposefully implanted in it. But if I were to need a heart transplant, would I feel anything but tremendously grateful to receive one from a recently deceased person who is, by definition, now a cadaver? What's the difference?

These are questions I've been thinking a lot about recently. I'm reading a fascinating book called SuperSense about neuroscience and cognitive development and how our brain processes supernatural belief. And what makes us uncomfortable about transplants (whether they be organ or tissue) is that we all hold some supernatural belief about essentialism. We tend to believe that the essence of the person is imbued in the physical properties of the body. And there is something deeply unsettling about incorporating any part of a stranger (because what if they were someone really awful, like a child molester or a Republican, when they were alive?) into your own body. Never mind that Alloderm goes through an extensive stripping process that rids the tissue of most of its sources' DNA and other "essence." Never mind that the tissue was donated by someone who wanted their body to be of use to others when it was no longer of use to them. Never mind that without this Alloderm, this breast reconstruction would not be possible. Never mind all the positive aspects. The heebeejeebees linger. (There is even a discussion about this on the FORCE message board; apparently lots of ladies are struggling with this.)

I'm a rational person. I'm highly educated. I believe in science and reject supernaturalism in all its forms. But yet, I'm weirded out by donor tissue. I know I shouldn't be. But I am. And ultimately, the reason, according to the book's author Dr. Bruce M Hood, is that the human brain is wired to believe the unbelievable and the irrational. I know I shouldn't think of this tissue as unclean (it goes through sterilization) or possessing the essence of its donor (because at the end of the day, we're all just meat, you know?), but I do. And that's the struggle I'm having, not only with this aspect of surgery or being BRCA postive, but of the entire experience of pitting rationality against emotions. Our thoughts and feeling about things can be incredibly dissuasive even when our rational mind wants us to proceed.

My BRCA friend Brandi posted a link to this Australian news article on my Facebook page this morning. Essentially, it reports that in female pigs, scientists have been able to induce breast growth using the pigs' own fat cells; the long term implication is that women who have had mastectomies may be able to regrow their own breasts. Amazing stuff. But when I first read the article, I couldn't help but imagine that pig boob in the picture sewn onto my body. I know that's not what they are proposing (and dear jebus the implications of that on my husband, an avowed bacon lover, I can't even begin to imagine), but my misreading/misunderstanding actually raises fascinating questions again about essentialism: would a pig's breast continue to be the pig's or the human's onto which it was grafted? Would the human assume pigish qualities? Obviously, that's all science fiction. And the actual process the article discusses is incredibly promising (and ironically one day might obviate the need to even consider Alloderm in future mastectomy patients). But I'm so ensconced in the heady considerations of Hood's book, I can't help but see its implications and applications everywhere.

And the end of the the day, one of the most difficult aspects of processing the news you carry the breast cancer gene is that you've been told there is something wrong with yourself so microscopic and so pervasive that it exists in every cell of your body. And that news affects the way you view yourself. If this mutation is in every cell in our bodies, we must be, by definition, mutants. (And though more cartoonish and more super-hero-esque than our zombie friend the cadaver I talked about earlier, "mutant," no matter how tongue-in-cheek the implication might be, is not a desirable or coveted state of being.) So how do you square this scientific fact (my DNA has a typo and because of that I'm likely going to get cancer) with your self-perception (despite that, I'm still a good person with excellent taste in shoes)? Does being a mutant trump everything else? Or does being yourself trump being a mutant? What defines us? DNA (something real)? Or our "essence" (something supernatural)? Fascinating questions for which I don't have ready answers. But I do know I can't stop admiring the new turquoise ballet flats I picked up in Montreal last week.

That (Non)Peaceful, (Un)Easy Feeling

2009-11-04T09:24:00.000-08:00

Oh anxiety, my old friend. You have returned.

This fall, as most seem to be, has been very busy. There have been several long- anticipated events--two weddings, a visit from a dear friend, a weekend getaway--that had been on the calendar for so long that when they finally arrived, it was somewhat disconcerting; these events that had been so far in the future were suddenly imminent, and then happening, and then history, just like that. There is, of course, an event that's been penciled in for December 18 for months now: my surgery. And though it's still safely six weeks off, it's getting close enough that I'm starting to feel like I want off this crazy treadmill.

The return of my anxiety about my surgery (and my wish that it could remain a speck on the distant horizon as opposed to a fully formed object drawing nearer with every sunrise and sunset) coincides with the lowering of a thick curtain of stress on my non-BRCA life: I'm traveling for work three weekends of four this month (one down, two to go) and, next Tuesday, after months of seemingly fruitless negotiations and waiting, G and I close on our first place. So, somehow, magically, I suppose, I have to pack up our apartment (where we've lived for seven years and have accumulated the corresponding amount of clutter), purchase furniture for our new place (because the thrift store furnishings are not coming with us to our first adult place), and arrange for movers and painters and wallpaperers and deliveries, all while I am not home (and, in the case of my trip this weekend, not even in the country). And it needn't take a degree in psychology to see that my anxiety about moving is directly tied to my anxiety about surgery: I have to have my house (literally) in order because I can't control my body.

And that's where my old friend anxiety really rears its heinous head: I'm getting scared about anesthesia again. I'm not afraid of surgery. I'm not afraid of recovery. I'm not afraid of losing sensation. I'm not afraid of relearning to love my new body. I'm afraid of losing control -- of falling asleep at literally the most pivotal moment of my life. I know everyone has an idiosyncratic fear -- I know a woman whose worst fear about surgery is getting into a car accident on the way home from the hospital and dying (thus prompting people to say, see, surgery wasn't a good idea at all, was it?), a woman who fears having to sue her surgeons for malpractice -- and mine is this: I'm afraid of not waking up from surgery. What if I have some bizarre mechanical glitch in my heart and I go into cardiac arrest? (I have a faster resting heart rate than most...is that going to be a problem?) What if I stop breathing?

Statistics have been a critical part of my decision making process. And it's ironic, because it's exactly the steely rationality that allows me to make such a brave decision to face surgery that has all but abandoned me when I tried to calm my fears about it. A nearly ninety percent chance of getting breast cancer: not good odds. A less than one percent chance of having complications during surgery: also not good odds. Obviously, I should take the latter so I don't have to face the former, and I will. But I'm having a hard go of it lately.

I've never been put under, nor ever had major surgery before. (Wisdom teeth don't count, right?) So I know my fears are a natural part of the process. But I'm kind of bummed I'm no longer Wonder Woman of emotions and certainty. I'm trying to focus on the future: how fabulous it will be, one day very soon, when all of these anxieties -- about cancer, about surgery, about making the right choice -- will be moot. Because I'll be on the other side. I just really hope I get to see it.

(Don't) Say (Just) Anything

2009-10-23T08:48:00.000-07:00

Inspired by this post by young survivor Marika Holmgren over at the HuffPo, In Honor of Breast Cancer Awareness Month, Top Ten Things Young Survivors (Probably) Don't Want to Hear, I put together this list. Enjoy.

Top Ten Things Young Previvors (Probably) Don't Want to Hear

10) But you're so young!
Well, I'm staring down the big 3-1 next week, so I don't really think I'm all that young any more (but not yet middle-aged... didn't Britney Spears write a song about that?), but all that is beside the point. Young women do get breast cancer, and young women with the breast cancer gene, especially, get breast cancer. In fact, recent studies suggest that women with BRCA mutations are getting sick an average of six years earlier than the previous generation. So we're never to young to get breast cancer.

9) Well, if you get breast cancer, at least it's curable.
This impression that breast cancer is somehow the "good cancer" to get befuddles me. Have we really sanitized the disease so much with all the pink ribbons and smiling bald ladies in ads that breast cancer has just become a woman's right of passage? Breast cancer changes lives. And breast cancer ends lives. I'm not sure why we've forgotten (willfully ignored?) this inconvenient truth. And unless I missed the headlines, there still is no cure for cancer. What's more, women with BRCA mutations who have had breast cancer have a 40% chance of recurrence and an elevated risk of developing second primary cancers. In other words, breast cancer isn't like chicken pox, folks. You don't get it once and are immune to it forever.

8) You're removing healthy body parts that may never develop cancer. That's crazy.
To you, maybe. But to me, it's the opposite of crazy. It's totally sane and rational. I have a nearly 90% chance of getting a disease I know I can prevent if I have this surgery. What's crazier, getting it when you didn't have to or not getting it because you had surgery? I'm going to go with what's behind door number two, Monty.

7) So wait. If I was told I had the brain cancer gene, I'd have to remove my brain?
Are you sure you haven't already? No. You would not remove your brain. Because you need it to live. I am removing my breasts because I can live (both figuratively and literally) without them. No, I won't be able to breastfeed, which is evolutionarily their only function. But my future children will survive and thrive on formula. Lots of people weren't breastfed. And they turned out fine. My kids will be, too.

6) That's not what I would do.
You are free to think that, but I don't want to hear it. Truthfully, you-imaginary-person-who-doesn't-have-the-BRCA-mutation, I don't really care what you would do. Because you don't know what it feels like to be me. So zip it.

5) What if you have the surgery and then die of something else?
Well, that's the point right? Not to die of breast cancer? I don't know how long I've got, but I'd like to spend my time here without breast cancer.

4) Look on the bright side, you're getting a free boob job!
Reconstruction does not equal a boob job, folks. Enough said.

3) I always hated my boobs. You're lucky to be getting rid of them.
I know lots of women out there have vexed relationships with their bodies, and there are parts of mine (armpit fat area, I'm looking at you) that I hate. But my boobs are not one of them. I really like my boobs. They were totally unexpected additions to my life. I lived until age 21 without ever needing to actually wear a bra. And then suddenly, I needed one. A lot. And part of me is still that desperately flat-chested, square torso-ed boy-shaped girl. So when I see these womanly mounds on my body, I do a silent little touch-down celebration. Because I wanted them for so long and they finally arrived and they are beautiful. So, no, I'm not lucky to be getting rid of them. I'm lucky for the time I had with them.

2) You should do [insert healthy lifestyle choice]. I hear that helps prevent breast cancer.
Well, if we knew how to prevent it, no one would get it, right? I hate to be so pessimistic, but, especially in women with BRCA mutations, all of this healthy-lifestyle-doing-yoga-drinking-green-tea-taking-vitamins seems like titling at windmills to me. But, I'll play along. So, to prevent cancer I need to be healthy. But I already am. Vegetarian? Check. Runner? Check. Yogi? Check. Non-smoker? Check. I'm doing all I can here, folks. I'm staring down a 9 in 10 chance of getting breast cancer. I wonder really what difference it makes if I forgo that Diet Coke or glass of white wine.

1) Don't do anything drastic yet. There will be a cure soon.
I sincerely hope you are right. And I sincerely hope that in five, ten, twenty years, prophylactic mastectomies for high-risk women will seem as draconian as blood letting. But I'm not going to stand around idly and wait for miraculous medical advances. I'm doing the best with the technology and understanding we currently have.

Top Ten Things Young Previvors (Probably) Want to Hear

10) Is there anything I can do? Do you need a ride anywhere? Wanna grab a drink?
9) I'll be there for you.
8) Good for you for doing what's right for you.
7) I don't want you to get breast cancer, either.
6) I don't know what it must feel like to be going through what you are going through, but I know it sucks.
5) Talk to me. I'm here to listen.
4) When you are recovering from surgery, I'll come over and watch DVDs with you, wash your hair, and bring you vegan junk food.
3) You are brave.
2) You are strong.
1) You will still be beautiful.

The tale of two women

2009-10-21T10:26:00.000-07:00

There were two important articles published this week on the subject of being BRCA+, and they represent two different poles on the spectrum of prevention and illness.

Lizzie Stark published "I’m 27 and about to have a double mastectomy" on the Today Show section of msnbc.com. As the title suggests, the essay details Lizzie's choice to have preventative surgery to avoid getting breast cancer. Lizzie is BRCA1+ and watched her mother, who first got sick when Lizzie was just 18 months old, struggle with the disease her whole life. Needless to say, anyone who has read any word I've written in this space in the last six months would recognize that not only do I wholeheartedly support Lizzie's very public declaration of her intent but see in her story many echoes of my own.

In Newsweek, Sara Sussman published "I’m 35, With Stage IV Breast Cancer." As the title suggests, the essay details the long history of missed diagnoses that has doomed Sara to a life of incurable breast cancer. Sara is also positive for the BRCA gene, but she didn't know this until she was finally diagnosed with cancer after years of trips to the doctor complaining of chest pain. The tacit implication here, of course, is that if she knew her BRCA status, not only would no doctors have told her she was too young to have breast cancer, but she wouldn't have been at stage IV by the time they found it.

The two essays represent the wide spectrum of experience of BRCA+ women, and both affected me very deeply. In Lizzie's essay, I saw myself. In Sara's, I saw my worst nightmare.

But what is really interesting (and frustrating and infuriating and bothersome yet wholly expected and inevitable) is the reactions the pieces have garnered. Sara's piece has but one comment, from a sympathetic reader who wishes the author the best in overcoming her illness. Lizzie's piece, on the other hand, has, at last count, 158 comments, most of them overwhelmingly negative (not to mention ignorant). Now, even though I've publicly declared my distaste for engaging with the naysayers, I read every single one of those 158 comments (and refrained from responding because I'm doing that here) because in so many ways Lizzie's choice is my choice and those reactions to Lizzie are reactions to me, too. None of those hateful comments inspired in me a change of heart, of course, and I'm guessing they haven't swayed Lizzie either (be strong, girlfriend). What these comments do reveal is a vast misunderstanding of the nature of hereditary cancers, a general queasiness about elective surgeries, a conspiratorial distrust of the insurance/medical communities, and a bone deep intolerance for other people's choices. I was nearly in tears reading some of the commenters' hurtful words -- many of which concerned Lizzie's decision to have a family one day, despite the fact that she may pass the gene along to her future son or daughter -- because those cruel and unenlightened criticisms are aimed at any young woman who makes the same brave choice as Lizzie. In other words, those people were spitting their vitriol at me, too.

Now, I know the web is full of crazies, and one needn't look further than the dozens of comments recommending unproven and dangerous alternative "cures" for cancer to realize we're not even starting on the same page here, let alone the same book. But the fringe is not my concern. It's the average person who writes things like "I hope her insurance isn't paying for this!! This should have to be paid privately, just like any cosmetic surgery!" Or the 20-year-survivor who thinks Lizzie can avoid cancer by eating healthfully and avoiding caffeine. Or the commenters who think breast cancer affects only American women because of the way we live. Or the person who suggest Lizzie is making "every one around you suffer with you when there's a good chance nothing may happen."

(I'm going to stop there because I feel the rage brewing and the tears forming.)

These comments display a radically intolerant/occasionally completely uneducated understanding of the issues facing BRCA+ women, and for better or for worse, are exactly the kinds of reactions Lizzie or I or anyone in our situations are bound to encounter at some point in our lives.

But all of this is so much more disturbing when considered along with Sara's essay and Sara's story. I mean, what if Lizzie took the advice of the hateful commenters, decided to forgo preventative surgery, and wound up like Sara, with metastatic breast cancer at age 35? What would those commenters say then? I'm guessing, from the lack of controversial responses to Sara's essay, nothing. Lizzie and Sara are bookends on the continuum of BRCA+ women. And for some reason, Lizzie can be condescended to, reprimanded, and called crazy, while Sara only elicits our quiet sympathy. I said I'm not going to engage the angry mob, but I will say this: it's not fair.

Lizzie and Sara and I are all the same woman. We're just at different places in our journey. Their pain is my pain. And no one deserves to be treated like that.

The Keynote Speaker Has Left the Building

2009-10-17T09:22:00.001-07:00

I made my debut as a breast cancer spokeswoman last night at a education/awareness event that represented the first collaboration between the Chicago FORCE chapter and college-aged women. The sorority with whom we partnered was fantastic, and the women were gracious, curious, and kind. (And I fell a little in love with a few of them, over bubblegum pink martinis, after my speech. Ah, college. So boozy.) Although I fear that we might have inadvertently freaked a few of them out. Anyhoo, I got some very positive reactions to my speech, so I thought I'd post it here for those who couldn't make it/were there and want to relive the magic/or are just curious. I've anonymized some of the personal details, since this blog is still semi-anonymous, but otherwise, to get the full experience, imagine a girl with curly hair, wearing a bright pink dress (illustrated above and no that's not me), with wavering voice, delivering this speech, occasionally pausing to apologize for her nervousness and to take drink of ice water. That's pretty much what it looked like.

Thank you so much for having me here tonight. As H mentioned, I’m a NU graduate, so I’m really thrilled to be here tonight talking to you about something that is so important to me.

Well, let’s cut to the chase. I’m here tonight to talk about boobs. Your boobs. My boobs. (Well, mostly my boobs.) It’s a subject that is near (literally) and dear to my heart. I’m not ashamed to admit I am quite fond of my boobs. When I was a little girl, I used to pray every night for them. And then, at long last, they arrived. And they’re pretty fabulous, if I do say so myself. But—and here is the big but—I have a much different relationship with my boobs today than I did even a year ago. And that’s the story I’m here to tell you tonight.

But before I even get started, I want to be clear that I’m not trying to scare any of you. Although some of what I’m about to tell you may make you uneasy, I want you to know that I’m here tonight to educate you, so that you in turn can help educate your friends and families, so that you have the information that I never did when I was your age.

Let’s start with the big picture stuff first. Breast cancer is a devastating disease, and there probably isn’t a single person here tonight who hasn’t been touched by it in some way. The average woman has a 1 in 8 chance of getting breast cancer at some point in her life, and, aside from skin cancer, it is the most common form of cancer in women. And behind heart disease, it is our second most common cause of death.

But I’m sure you know most of that. Or at least know it in the same way you are aware of things that don’t really seem much to apply to you. And why should it? You guys are so young! Life is full of possibility, and your health is limitless. Breast cancer, even as recently as a year ago, didn’t really register on my radar, either. I mean, it wasn’t something that would ever happen to me.

But yet I’m standing here in front of you tonight. So what changed? Well, I’m not here as a breast cancer survivor. I’m not sick. I’m here as something a little different: I’m a breast cancer previvor. That’s probably a word you’ve never heard before, and six months ago, neither had I. But here I am, a previvor. What is a previvor? Well, I’m a survivor of a predisposition. In this case, I have a predisposition to breast and ovarian cancer. Remember how I just said that the average woman has about a 12% chance of getting breast cancer? Well, I have a nearly 90% lifetime risk of getting breast cancer. That’s more than seven times the odds of the average women walking around campus. But-—and this is why my story is still the story of a survivor—-I’m not going to get breast cancer. How? Well, I’ll tell you in a minute. But let me first catch you up on how I got to be standing in front of you tonight.

I grew up in a hearty family. Illness rarely penetrated our lives. When I was very young, my grandmother got breast cancer but quickly, it seemed to me, she got better. And she stayed better for almost 20 years. Both my parents are alive and well, and my brother and I have been healthy all our lives. Aside from my grandmother’s brief illness, cancer really hasn’t been a part of my world.

But all that changed last August. Exactly a week after my wedding to my handsome husband (who is here tonight supporting me), I got an email from my father. The subject line said, “Something Important.” Looking back on this, I realize that this was a huge understatement. Something important is like “don’t forget to pick up a loaf of bread on your way home.” Something important is “don’t forget to get the dry cleaning.” The subject of my dad’s email should have read: “This information will change your life.”

In the email, my father told me that J, a second cousin I barely know and who I see only once every few years, had been diagnosed with an aggressive form of breast cancer. She was only 31. J was the seventh woman in my father’s extended family to develop breast cancer, but it seems that many cancers—-including ovarian, colorectal, pancreatic, prostate, and leukemia—-have been killing us off for generations. And it turned out there was a problem, a problem with the H family DNA that was causing all these cancers. My father wrote that a rare genetic mutation had been found. It was called BRCA2. And there was a chance I could carry it.

When I read my father’s words, they terrified me. But at the same time, I had no idea what he was talking about. I had no idea what a BRCA2 gene was. I didn’t know what it did, what it stood for, what it meant to me. I mean, the email could have said that the H family has a genetic mutation that causes us to grow unicorn horns out of our foreheads. At least then I could have pictured what was going on.

But probably what troubled me most was that I had to radically shift my thinking about cancer in my family. When I said before cancer didn’t affect me life, it was because I was only thinking in terms of my immediate family. On my small branch of our larger family tree, we had been spared, at least so far. But in the bigger picture, cancer was rampant.

My father’s extended family is quite large. His father was one of nine, and their children and their children’s children constitute an ever expanding brood. In a tradition that began long before I was born, the H's would gather on Thanksgiving in the basement of a Ukrainian Orthodox Church in Wilmington, Delaware. This was the only time I ever got to meet some of the names I would later recognize on our family’s cancer history chart. In that basement, three and sometimes four generations of family would convene, year after year, for a buffet style feast that began at 2 p.m. sharp. Each family branch—-the descendants of the nine brothers and sisters—-had their own table. Directly behind ours was a table whose numbers seemed to dwindle every year; I vaguely remember hearing my parents discuss N, who had ovarian cancer, or L, who had breast cancer. But it wasn’t until now that I realized why they'd stopped coming to Thanksgiving. They had died. That was how cancer worked in our family. One year you ate turkey with us; the next you were gone.

After my father’s initial email, as I started to understand more about how the BRCA gene affected my family, I also got curious about the gene itself. It turned out that that my mutation has a nickname: it’s called the breast cancer gene. I also learned that everyone has BRCA1 and BRCA2 genes, but mutated genes, like the one found in my family, can’t suppress tumor growth. BRCA genes are passed down from parents to their children, from moms and dads both to sons and daughters; a parent with a mutated gene has a 50% chance of passing it to their child.

When my father sent me that first message in August, he hadn’t yet been tested for the mutation. All we knew was that the gene was “in the family.” But in December, my father had his blood drawn. On Christmas Eve, he got the results: he was positive for the BRCA2 mutation. That meant I had a 50% chance of inheriting it from him.

At this point I had to make a decision, and I did it rather quickly: I wanted to know if I, too, carried the mutation. I wanted to know my genetic fate. No matter what the results, I wanted to know what my chances were so that I could everything in my power to beat the odds. It never occurred to me not to get tested, but I understand that some people may decide they simply don’t want to know. For me, knowing that the gene was so close, so possibly part of my own genetic makeup, I truly felt I didn’t have a choice. It took me a few months, but I finally got the nerve to call for an appointment. On April 9, with my husband by my side, I learned that I, too, carry the BRCA 2 mutation.

Even though I had mentally prepared myself for the worst, I was still devastated when I learned the news. It was like I walked into the doctor’s office a normal woman and left with a death sentence. I had always prided myself on being a healthy person with healthy habits. I’ve been a vegetarian for 12 years, I exercise regularly, and I don’t smoke. And most of all, I thought, I was too young to ever have to deal with any of this. But you can’t argue with genetics. Inside of every cell in my body, there was this errant, miscoded gene, and simple things like living a healthy lifestyle would never change that. In a moment’s time, left my former carefree existence and embarked on life as a woman at extremely high risk for breast cancer.

So now what? I thought. What are my options? Well, it turns out I had a few, none of which were all that spectacular. First and foremost, I needed to get a mammogram. And after that, I would need to get an MRI. And then after that, an ultrasound. And then after that a clinical breast exam. And then, after that, start the process all over again. In order to find any suspicious changes in my breasts, I would need to have some kind of breast test every three to four months. For the rest of my life. Or until they found cancer, whichever came first. Surveillance like this can’t prevent the cancer from coming, but the hope is that when it does, it will be caught early. I have always been a nervous test-taker, whether it was the SAT or at the DMV. So the idea of going through all that anxiety and then still getting cancer didn’t appeal much to me at all.

The second option involved a five-year course of a medicine that would reduce my cancer risk by half. But on the flip side, it would shut down my ovaries and send me into early menopause. To that I said thanks, but no thanks.

But the last option was truly the worst of all: preventative surgery. Since I had such a high risk of getting breast cancer in the first place, the only way I could really ensure I wouldn’t ever get sick would be to get rid of my boobs before they ever tried to kill me. I mean, chop off my perfectly healthy, perfectly beautiful breasts? You must be crazy.

Now some of you might ask, and rightly so, why should anyone, given the options I’ve been presented, get tested for the gene. What good has knowing about this predisposition done for me? Well, my speech was billed as being about how knowing risk for hereditary breast cancer has changed my life for the better. And I’m sure you’re wondering how that could be. But it has. It really has. On a philosophical level, it’s put me back in touch with who I truly am. It’s a bit of a trip to think about your DNA as damaged. Because having a genetic mutation isn’t something you can see, or touch, or feel. If you break your arm, you set it and let it heal. When your DNA is broken, you can’t repair it. And since this faulty gene, this typo-ridden deviation, is in every cell in my body, I can’t remove it. But rather than this alienating me from my body, it’s actually reconnected me to my core emotions.

I’ve always been a cynical, somewhat acerbically dry-witted person. And I deal with things, I hope, with both humor and grace. So when I found myself embarking on this strange journey, I approached it the only way I could. As me. I cracked jokes. I started a blog about what it was like to be a quote-unquote mutant. I have never been shy or afraid to share, so I told lots of people what I was going through. And in doing so, I helped them see that this information wasn’t going to kill me; it was going to make me stronger.

Another wonderful thing that happened to me was that I met a bunch of new friends. When I first learned about my BRCA mutation, I thought I was the only person in the whole history of the world to ever have to go through such a horrible experience. I pitied myself because I thought I was all alone. But I quickly learned that couldn’t be further from the truth. In the last six months, I have met some of the most incredible women I’ve ever had the privilege of knowing. And not only are they smart, beautiful, and successful, they understand me. Because they themselves have BRCA mutations. They know what it sounds like to be pushed into an MRI scanner and have the magnets whirl and buzz around your body. We can joke about doctors with cold hands doing breast exams. And we can commiserate about what it feels like to be scared. And they know what it feels like to doubt.

But the most important thing that has come out of this experience is the sense of power I have over my genetic destiny. Despite what you might think, I consider myself very lucky. Because I got this vital information—-that someday I’ll probably develop breast cancer—-and can do something with it before I ever get sick. It’s kind of like getting a postcard in the mail from your future self, warning you of danger ahead. That still kind of blows my mind. Knowing I have this predisposition puts me in control, not the cancer. I get to decide how I’m going to manage my risk. And I’ve made a choice that I feel very good about.

Two months from Sunday, just up the road at the corner of R and C, I’m having a double mastectomy. Yes. That’s right. After weighing my options, I decided that preventative surgery was the best choice for me. For me, the risks of keeping my natural breasts even a moment longer are far too great. After all, my cousin J was just 31 when she was diagnosed, and I’ll be 31 in 12 days. So I’m getting rid of these boobs I love so dearly and trading them in for new models. It’s been a difficult decision to make—-after all, I’ll be losing a lot, not the least of which is the ability to breastfeed my future children. But I feel like I’m gaining a lot, too. I’m gaining the peace of mind that comes with knowing I’ve done all I can with the cards I’ve dealt. I’m being really proactive about my health. And I’ll also have really amazing new boobs. They’ll be perky and round and they’ll never ever sag.

I know this is a lot to take in at once, and I know some of you are undoubtedly thinking, that girl is nuts. I mean, after all, I could be one of the fortunate ones, right? I could be one of those people that fall into the lucky 10-13% who never get breast cancer. Well, maybe I could. But I’ll never know. It’s not a perfect analogy, but I often ask people this: would they fly knowing that, at some point in their lives, they had an 87% chance of being in a plane crash? Nearly everyone says they’d rather take the train. So that’s what I’m doing, so to speak. I’m opting to take the train.

In closing, I want to wish you all healthy, healthy boobs. It is my sincere hope that none of you ever will have to deal with what I’m going through. And chances are none of you here tonight will. These mutations are very rare: about 1 in 300 people carry them. (Although in some populations, like Ashkenzai Jews, the odds are closer to 1 in 40.) But if you or someone who know has breast or ovarian cancer that seems runs in their families, I would want you to tell them this: learning your BRCA status is a blessing, not a curse. I truly believe that genetic testing saved my life. If I didn’t know I carried the breast cancer gene, I could be blindsided by cancer at any moment. Now I have the knowledge and power to outsmart the disease.

Thank you so much for having me here tonight. I hope that none of you ever have to deal with any of this, but if you do, please know that you are not alone. Thank you.

Certainty and its discontents

2009-10-15T09:21:00.000-07:00

The closer I come to surgery, and the more comfortable I become with my decision, the less imperative I find it to try to convince others that I'm making the right choice. You think I'm too young? You think I'm overreacting? You think I'm making a terrible mistake? You are entitled to those opinions, and nothing I say is going to change them. Of course, I respectfully disagree. But I wouldn't claim I'm right and my imagined interlocutor is wrong. We're just different people. And thus have different hopes and fears and thresholds of anxiety.

I'm no longer interested in converting anyone. I'm a very political person, and I am very outspoken and impassioned about my beliefs. But I'm not interested in getting into screaming matches anymore. I can't convince someone who thinks Obama is the Antichrist they are wrong any more than they can convince me they are right. So why bother? I've come to realize certain opinions are intractable, and that gut instinct, the answer to that what-would-I-do-if-were-in-her-shoes question, is usually lasting. My gut instinct was cut 'em off, and in many ways my pro-surgery stance is immutable, too. Nothing, no hypothetical scenarios about death or disease coming in ways I can't anticipate, can change that.

Because, you see, I'm not having preventative surgeries to improve my life expectancy. I have no idea how long I've got on this earth, and I don't think that my death is predetermined. I believe in a random, chaotic, and ultimately meaningless universe, and I can't know when my end is nigh. I'm having preventative surgeries to improve my not-having-breast-cancer expectancy. That's it. I don't pretend that somehow these surgeries will leave me impervious to other illnesses or make me magically immortal. I'm just trying to rein in my risk of having breast cancer. And with that, my anxiety about getting breast cancer. I'm having preventative surgery to improve my quality of life, as well, because I know that always waiting for the other shoe to drop -- always sleeping with one eye open, and every other cliché about expecting imminent bad news -- will kill me quicker than any cancer could. Because my favorite thing about my body isn't my boobs -- it's my joie de vivre. And I'd rather preserve the latter than the former.

I know what I'm doing is shocking. It's dramatic. It's violent. It's irreversible. But it's the right choice for me. Some people will get it, some will not. It takes all kinds. We can coexist. I'm not going to try to change your mind. So please don't try to change mine.

Even Rock Stars Get Breast Cancer in October

2009-10-07T14:46:00.001-07:00

I've been neglecting this space lately, but not without good reasons. 1) I had the flu, possibly the porcine kind, and my brain did not function because it was clouded with cold medicine. 2) Once I got better, things got crazy, both at home (we're trying to buy one) and at work (don't get me started). I've been so busy I sometimes forget to pee. And then I get crampy, and I'm like, oh yeah, I've been chained to my computer all day. 3) I really feel TOTALLY AT EASE ABOUT SURGERY. I'm just sorta counting the days at this point. I can't wait to be on the other side.

But I come here today to address the big, pink elephant in the room: it's Breast Cancer Awareness Month, a fact you'd have to be living in a cave and/or colorblind not to have noticed. This is the first Breast Cancer Awareness Month that I've been aware of my breast cancer risk, and, as such, I'm experiencing it in a different way than I have before. (It is also my last Breast Cancer Awareness Month with breasts, but that's neither here nor there.) But lest you think I'm tying pink ribbons 'round old oak trees, I'm actually finding my cynicism and skepticism are at all time highs. Here's the deal: I'm not a pink person, in character, attitude, or outlook. I reject it based on its signification of stereotypical femininity. I also think pink oversimplifies and white (pink?) washes the disease. It tells people it's OK to get breast cancer and getting breast cancer doesn't make you less of a woman and breast cancer is pretty, just like the color pink. When of course that's not true at all. And perhaps, worst of all, it makes breast cancer so synonymous with women that men who fall victim to the disease are embarrassed to be stricken by a female cancer.

But what is the purpose, after all, of Breast Cancer Awareness Month? My sense, as someone who experienced dozens of them before it ever meant anything to me, is that it does not actually do anything. It's not like every October I was suddenly diligently doing self-breast exams. And I don't think, for the average women who hears that they have a 1 in 8 chance of getting breast cancer in their life, they suddenly become obsessed with their odds (because let me tell ya, those look pretty good to me over here in 87% land). I think Breast Cancer Awareness Month does at least two things, so far as I can tell. 1) It allows people to feel good about themselves by participating in events -- walks, fundraisers, lectures, pink t-shirt wearing conferences -- that address or fund breast cancer in some way. People like to feel good about themselves, and they like to believe that their good deeds will somehow immunize themselves from ever catching the dreaded disease. So lots of people wear and think pink because they want to do something to make themselves feel empowered while also banking karma points. 2) (And this I think is the more successful/admirable achievement) Breast Cancer Awareness Month is great PR for Breast cancer. Now, breast cancer, being a deadly disease, and a non-human entity, can't hire a PR agency. But for lots of years, hundreds even, it had a very bad rep. It was considered a "woman's problem" and not addressed by name because the word itself contained a body part and that body part was a dirty word. But the modern breast cancer movement forced society to address the issue, to confront their squeamishness about it, and deal with it. As such, Breast Cancer now has a much better public profile, so much better, in fact, that lots of people don't think it's that big of a deal because, gosh, look at all those ladies wearing pink and smiling in those posters on the bus and in commercials on television. It's done such a good job of resuscitating its image -- its been so successful in getting us to talk about and feel our boobs -- that in some ways has diminished its significance. Breast cancer is so quotidian now it's like traffic or the US Mail. It's just there.

Which brings me to my last point. Breast cancer isn't just a woman's cancer, though we've done a capable job of branding it as such. This fact is on my mind for two reasons. 1) (And by the way, what with all the numbering in this post? I'm thinking very linearly today) My husband, who along with other people I respect, including Chuck Klosterman, has otherwise good taste in music but a boyish soft spot for the band KISS, alerted me yesterday to the fact that Peter Criss, the original drummer and the one in the cat make-up, has breast cancer. (I just mentioned this to my boss, who is also is a KISS fan, and he said, and I quote, "That's so un-rock 'n roll!" Which it's not, because it's breast cancer. My point exactly.) Criss issued the following statement: "I wanted to let you know men get it like women do. Don't be afraid to let someone know if you have a lump. Do the right thing for you and your loved ones and get it checked. Man or woman, there is no discrimination with breast cancer ... we all don't have nine lives." Rock gods are fallible too. 2) A close relative, whose name or relation I will not disclose, because I haven't gotten his permission to tell his story here, recently discovered precancerous cells in his chest wall. He was was lucky enough to find them, of course, because, he, like me, is BRCA2+ and was doing close surveillance. But despite what I consider a near-miracle of detection and prevention, he was terribly upset to learn he was in the first stages of developing a woman's disease and, to combat it, had to undergo a woman's surgery. The fact that his life was saved was over-shadowed by shame.

All of this is to say that, yes, I'm glad we can talk openly about breast cancer. I'm glad "breast" is no longer a dirty word. And I'm even mostly OK with the onslaught of pink -- ribbons, NFL uniforms, other shit. But I worry about the normalizing we've done to the disease. That we've made it so accessible that its no longer viewed by the general public as disruptive or deadly (I definitely have heard more than once, on my decision to have my breasts removed, "Well, if you do get breast cancer and catch it early it's no big deal, right?" Riiiight. Cancer is fun! It's pink! It's women hugging and smiling! No.). And we've excluded the men, so much so that a British man is petitioning to change the name of the disease to "chest cancer" because its current (gendered) name is too much of an impediment for men who might be at risk to seek help.

The biggest objective, it seems to me, of Breast Cancer Awareness Month should be advocating for a cure, rather than branding pastel colors. And yet, there is no cure. That's what we should really be talking about this month.

Mark your calendars

2009-09-28T12:25:00.001-07:00

Hard to believe, but September is on its way out. Coming soon: October and Breast Cancer Awareness Month. Mark your calendars and join us next month!

Here's the link to register. See you there!

T-minus 3 months

2009-09-18T12:52:00.000-07:00

Today marks exactly three months until my surgery. Or, to put it a different way, my breasts have 90 days to live.

For the past few weeks, I've been blissfully at peace with my decision, so much so that I find myself thinking, why on earth did I ever make such a big deal about this in the first place? They're just breasts. Big whoop. I'll have new (and some might say, given my natural asymmetry, improved) "boobs" the moment I wake up from surgery; it's just the insides that will have changed. Such a trade is so worth it to evade the specter of cancer.

Which brings me, of course, to Patrick Swayze (seamless transition, no?). I'd be massively remiss not to note his passing here on my blog. And it's not really such a stretch to do so, given that one of the cancers associated with the BRCA2 mutation is pancreatic. It's a terrifying disease that usually portends a quick death and rarely spares its victims. G's uncle passed away from pancreatic cancer a few years back, and I know he is haunted by that history and fears a similar fate (though he has no genetic reason to suspect so). Patrick Swayze fought a very public battle against the disease, and though he ultimately lost, I'm grateful that he lived in the spotlight as a cancer patient (even if I disagreed with his choice to continue smoking -- a known cause of pancreatic cancer -- during his treatments). Too often, we mere mortals deify celebrities and fantasize about how much better our lives would be if we were rich and famous like they are. But movie stars are, of course, human too, and they get sick. And sometimes die. When someone like that -- someone who is larger than life -- so publicly withers into a shell of his former self, we're all reminded of our own fragile mortality, and how important it is to value our health while we have it.

My relationship to Patrick Swayze began, like most of my peers (ie: girls near or under the age of 10 in 1987), with the film "Dirty Dancing." My parents would not allow me to see it, which, of course, only made me want to see it more. (I laugh about this now, given how tame the movie is compared to, say, most Britney Spears videos.) So when my friend M showed it at her slumber party, I felt half guilty and half pleased I was breaking the rules. There is a split second shot of Patrick Swayze's butt as he he gets out of bed after doing it with Jennifer Grey, and the girls and I rewound and paused and rewound and paused it so much I'm surprised we didn't break the tape. We were so young, so unaware of what sex or love or lust was, so prepubescent, and yet we still recognized Johnny Castle's unmistakable sex appeal.

I was teaching on Monday night when one of my students told me Patrick Swayze had died, and when I got home, G popped in the DVD of his favorite of Swayze's ouvre: Road House. It's still hard to believe that a man like Dalton could ever be humbled by disease, but cancer is the great equalizer: it's an equal opportunity killer. Even our icons can succumb.

Cancer, even the most curable varieties, is an unwelcome visitor to anyone's life, and I feel so lucky to have the opportunity to block its access to my body. Very few people have that option. And if I chose not to have surgery and one day got sick, I don't know if I could forgive myself for not taking the chance when I could. So in reflecting about all of this, especially following the cancer death of one of my childhood hearthrobs, I'm reassured I'm making the right choice.

In honor of Patrick Swayze, let's remember him like he used to be. With amazing (and voluminous) hair.

Patrick Swayze - Chippendale
Uploaded by tressage. -

Heath Care Reform Now!

2009-09-10T10:48:00.000-07:00

Spoiler alert: This post gets all political and stuff. I'm a hybrid-driving, soy-latte drinking, NPR donating liberal. I'm pro-health care reform and anti-stupidity. I apologize in advance if this post offends anyone.

I like our President. In fact, sometimes, like last night, when he is speechifying and looking so good doing it, I like him like him. I was in Grant Park the night he accepted the job and, like everyone else who shut down the streets of downtown Chicago celebrating, will never forget the joy, exhilaration, and, yes, hope I felt that night.

Things haven't been going too great recently for the Prez, and his health care reform plan has divided the nation. Across the country, ill-informed citizens have gathered at town halls to denounce phantom measures in the bill (my favorite: mandated abortions -- how exactly does that work?) and rally against big scary "socialist" Obamacare and its grandma-plug pullin', illegal-immigrant-protectin' ways, all while waving assault rifles and shushing dissent. Intelligent discourse on the subject has been critically depleted, and instead of thoughtful discussion about what actually is in the bill, we're shouting at each other about unicorns, Sasquatches, death panels, and other fictional constructs. The left has offered some characteristically muted rebuttals, but it's it the Joe Wilsons of the world who have stolen the spotlight.

The impassioned protests and mobilization of the far right against health care reform has one goal: keep everything just like it is because (ostensibly) everything is just fine. To me, the fervent defense of the insurance industry as it currently exists would have seemed as unlikely as a protective rally in favor of, say, the IRS, but apparently some people out there feel very strongly about keeping the status quo (and are even willing to lose digits over it). Most of these people, naturally, are insured, whether through private companies or Medicare (there's a head-scratcher: people insured by a government-run bureaucracy protesting government-run health care). Unfortunately, the stories and voices of the uninsured have been lost in the cacophony.

I'm for health care reform, and I have health insurance. More importantly, I have really really good health insurance. So far this year, I've racked up nearly ten thousand dollars in charges for doctors appointments, tests, and scans, and I haven't paid a penny for it. (I haven't yet been approved for my surgery this December, but I'm optimistic.) Moreover, since my plan allows for out-of-network care, I have had the opportunity to consult with the best doctors and chose the exact team I want to do my surgery in exactly the way I want it (I didn't realize what a luxury this was until I got an email from a fellow BRCA babe who told me she couldn't see the doctors she wants for the kind of procedure she wants because her coverage won't let her go out of state). I'm very lucky.

But in another way I'm not. I have, despite what legislation passed to prevent discrimination might intend, what could be considered by private insurers a preexisting condition (and if my mutated genes ever do actually cause cancer that I manage to survive, well, there's your preexisting condition right there). Right now I'm covered under a group policy and cannot be dropped because of my BRCA status, but if my husband and I ever decided to start our own business, for example, and purchase individual policies, I would likely run into trouble.

To me, one of the strongest reasons -- especially in the BRCA, breast cancer, and ovarian cancer communities -- to rally for health care reform is that it eliminates discrimination based on preexisting conditions; insurance companies will not longer be able to deny coverage or claims based on medical history. This is a real benefit, and one that far too few people are shouting about. (Komen has more about aspects of reform of particular interest to breast cancer patients and survivors.) I can't even begin to imagine what this journey would be like if I was without insurance; it almost brings tears to my eyes to imagine women without access to preventative surgeries, let alone women with breast cancer who can't afford treatment.

The health care reform fight has angered me (especially when I read about groups trying to scare breast cancer patients with hogwash about Obama's plan restricting access to life-saving medications and technologies; I'll let Rachel Maddow get all irate/incredulous for me) and saddened me. But it's also politicized me. We all have a stake in this, and just because I'm lucky enough to have health care (and good health care at that) doesn't mean I will protest change. For me, so far, the system has worked. But for so many others, it has failed them. I believe everyone should have access to the kind of care I do; it's time we fix our broken health care system.

Happy Birthday, Dad

2009-09-03T13:45:00.000-07:00

Today is my dad's birthday. I had intended to write a similar tribute to the one that follows on Father's Day, but I was without power/internet/sanity for nearly a week then and plans changed. So indulge me as I take advantage of this once-yearly occasion to say what I wanted to say then.

I am very much my father's daughter. We have the same long limbs and solid torso, the same substantial nose, the same unfortunate skin. But in addition to the many physical attributes we share, we are also kindred intellectual spirits: voracious readers, inquisitive observers, and spirited political commentators. When I was younger, I remember thinking my dad was the smartest person in the whole world; I would ask him endless question not so much because I wanted to know the answers but to see how far his knowledge reached. It is one of my proudest accomplishments that, as an adult, I can hold my own in conversation with my father and even, occasionally, teach him a thing or two.

Words have not yet been invented to describe the extent of my father's generosity; he truly lives to provide for his family. And because of this, because of his giving nature, not only have I been afforded the opportunity to make some of my most prized memories--summers at the beach house, semesters in Europe, the wedding of my dreams (at which both he and my mother walked me down the aisle)--but also I have been given the privilege to find who I am, to follow my bliss, and discover my passions. Everything he has given me has helped define who I am; his example as parent gives me something to aspire to.

Over the years, my father has given me many gifts. And this year, he gave me the gift of empowerment, action, and knowledge. When he tested positive for the mutated BRCA2 gene on Christmas Eve last year, he insisted I follow suit. And I did. And the result I got -- that I, too, carry in every cell in my body malfunctioning code than thwarts tumor suppression -- was not a curse; it was a blessing. This knowledge has allowed me to taken steps to ensure I'll never get the breast cancers than have been plaguing women in our family for so many generations. When I learned my results, one of the first things I said to my dad was, "I want you to know I don't blame you. I'm not mad you gave this to me." I hope everyday he does not carry the burden of guilt.

My father and I made a new memory this Spring when he accompanied me to Orlando to attend FORCE's annual meeting; Dad was one of only a handful of men in a sea of women -- some bald from chemo, broken down by cancer -- but he was there as a previvor himself, supporting his previvor daughter, learning about the gene we had inherited. It was an overwhelming experience, but it brought us closer than we've been in years. Being bonded by BRCA, my dad and I formed a team. And there is no one I'd rather have on my side.

So on this, his 62nd birthday, I want to thank him for all he has given me (BRCA included). And I want to toast my father's continued good health. Happy Birthday, Dad. Here's to many, many more.