The Scar Project: What Would You Do?

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

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

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

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

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

Running and Revision

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

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

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

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

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

This one goes out to the one I love

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


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

To my dearest G, on your birthday,

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

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

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

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

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

XOXO,
S

Intimacy after Mastectomy

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

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

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

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

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

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

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



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

A Survivor who didn't Survive

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

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

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

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

RIP Jennifer. You were too young.

Photographs from My Former Life

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

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

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

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

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