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 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.