Essentialism and breast reconstruction

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

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

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

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

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

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

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.