Thursday, December 31, 2009

Obligatory End of Year, Looking Back, Looking Forward Post


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!

Sunday, December 27, 2009

On Healing


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.

Thursday, December 24, 2009

Have Yourself a Very Mammary Christmas


'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!

Monday, December 21, 2009

Greetings from the other side


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.

Wednesday, December 16, 2009

A Break Up Letter to My Boobs


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

Tuesday, December 15, 2009

How to Say Goodbye to Boobs


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...

Tuesday, December 8, 2009

The End is Nigh


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 d├ęcolletage. 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.

Thursday, December 3, 2009

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


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

Monday, November 30, 2009

Movin' On Up


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.

Thursday, November 19, 2009

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


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.

Friday, November 13, 2009

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.

Wednesday, November 4, 2009

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.

Friday, October 23, 2009

(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.

Wednesday, October 21, 2009

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.

Saturday, October 17, 2009

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.