Friday, April 30, 2010

Boobs in Paradise

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

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

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

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

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

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

Friday, April 9, 2010

Happy BRCAnniversary to me

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

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

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

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

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

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

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

Wednesday, April 7, 2010

The OTHER Surveillance

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

But there are two sides to the BRCA coin.

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

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

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

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

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

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

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

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

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

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

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