Saturday, December 18, 2010

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

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

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

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

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

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

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

Monday, December 13, 2010

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

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

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

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

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

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

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

Monday, November 22, 2010

The Century Club

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

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

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

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

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

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

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

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

Friday, November 12, 2010

Real Housewives of BRCA

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

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

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

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

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

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

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

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

Thursday, November 4, 2010

A letter addressed to my (dearly departed) breasts

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

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

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

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

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

Little did they know...

Wednesday, October 27, 2010

Ten Years Hence

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

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

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

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

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

Monday, October 18, 2010

Spokeswoman Redux

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

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

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

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

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

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

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

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

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

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