Friday, July 31, 2009

Goodbye to Boobs World Tour

My husband and I are taking my boobs to the beach, so posting will be sparse (read: nonexistent) until we return from a well-deserved and much-needed vacation in Costa Rica. Pura vida!

Tuesday, July 28, 2009

Why I'm Having Surgery

On Saturday, members of the Chicago-area FORCE chapter met at Gilda's Club for peer-to-peer support. I had only known my BRCA status for three weeks when I attended my first FORCE event in late April; reflecting on my first impressions (Wow! There are so many other women just like me! And they are so nice and so pretty and not dead! Maybe I'll be OK after all!) and my emotions (bordering on panic attack) during that first meeting makes me realize how far I've come in barely four months. In fact, when I spoke on Saturday to the women I've come to know and love as friends, I commented that time really is elastic; these may have been the most stressful four months of my life, but man, I got shit done.

A brief time line of my emotions/accomplishments

April: Holy shit. Oh my god. I'm going to die. I'm dying. My boobs are going to kill me. My boobs are possibly already killing me. I'm damaged goods. I'm crawling into bed. Mmmm... vegan carrot cake! Must consume more food! And then take a nap. Am I dead yet? Probably soon. Holy shit.

May: I'm not going to die. I'm not going to let my boobs kill me. Wow! Those reconstructed boobs look really great! They are nicer than my real tits. I want those. But surgery is so scary. I'm scared of the anesthesia. Maybe I'll just wait. I'm going to the gym to blow off some steam. My boobs aren't going to kill me. But maybe they will. Holy shit.

June: I'm going to have surgery. Wait. Maybe not. Well, I think I'm going to have surgery. I don't want to have surgery. Why do I have to have surgery? Why me? this isn't fair. Pass the vegan carrot cake. I don't want this. This isn't supposed to happen to me. I'm going to have surgery. Probably. But first a nap.

July: I need to schedule surgery. I'm cool with this. This is part of who I am. Whatever doesn't kill me makes me stronger. I'm not going to let my boobs kill me. They're just boobs. Who cares? I'm picking up the phone. I'm dialing the surgeon. I'm having surgery.

I'm not sure if it's the amount of time that's passed since my initial diagnosis or the fact that I've made my decision (or both), but I feel so much better today than I did in April. Which is not to say I have it all figured out; I still probably spend half of my waking moments thinking about breast cancer, but that's down a good thirty or so percentage points in just four months. And I only check the FORCE message boards, like, three times a day, down from three dozen even in June. I haven't even read a book about boobs in weeks!

Perhaps I'm chill because the "end" is nigh. (The word end belongs in quotation marks because we all know that BRCA mutations are life-long, and there will be more fun--pancreas screenings! ovary removal! implant replacement!--to be had in the future. But for now, at least when it comes to my bosoms, we're nearing the point where I'll say goodbye to them, just as I suspected I would when I registered this blog name way back in March.) Or maybe time has a way of deadening--forgive the macabre image--the initial pang of fear.

This is the thing: I don't know if I'm ever going to get breast cancer. Although my family history is very complete (and oh boy does BRCA cause cancer in my folk!), I don't have a lot to extrapolate from in the immediate branches of my genealogical tree. I got the mutation from my father, who is healthy at 61. His brother, also a mutation carrier, is in his late fifties and disease-free. My grandfather, who bestowed on us all this dark legacy, did not get sick until his seventies. By those standards, I could live a long happy life with all my ladyparts, BRCA be damned. But then, like in so many things in life, men and women are far from equal: BRCA confers a much larger risk to women than it does to men. So I have to look elsewhere for guidance, and these are the numbers that matter: 30 and 87.

Thirty is the age my second cousin was when she was diagnosed with breast cancer. Her circumstances may appear on the surface different than mine (her mother was a breast cancer survivor, which automatically increases her risk); up close, however, we might as well be the same person. She inherited BRCA from her mother who inherited from hers, my grandfather's sister. The only difference is she got it from a woman--a woman who got breast cancer because of it. I got mine from a man who didn't. But, because of my cousin, that risk of getting breast cancer now--like this moment or tomorrow--is very real. So when I think, oh, BRCA doesn't affect my family, I have to remember I'm the oldest women on my branch of the family tree to have tested positive for the mutation. And I don't plan on being the first with breast cancer.

Eighty-seven, in percentage points, is my life-time risk of developing breast cancer. That's a damn near certainty in my book. And it's too stressful a possibility to live with.

From the moment I learned I carried the BRCA mutation--really, even before I tested positive--I knew I would chose preventative surgery. The question always was: when? I now know the answer: December 18, less than two months after my 31st birthday, a little more than eight months since I learned my status. Sure, I could wait a few years. But this is the thing: I walk around every day with a half-ton concert grand piano tethered on a fraying rope above my head. I know there is an 87% chance that puppy will fall on me, but I don't know when. So I've decided I can't walk around with that looming overhead any longer.

That's why I'm having surgery.

Friday, July 24, 2009

Thoughts on the eve of my wedding anniversary

As an English teacher, especially with the kind of students I tend to see in my classroom--nonnative speakers, older students who have been away from formal education for decades, and young people whose emailing and texting habits have deteriorated their grammar--you see your share of, how shall I say this politely, colorful manglings of the language. When faced with a daunting stack of papers to grade, these howlers, as I've come to call them, offer a much-needed injection of levity in an otherwise bleak task. One of my personal faves, in a paper about racial stereotypes, discussed profiling at the airport. It said something to the effect of "They think because I wear a headscarf I am a Middle Eastern theorist." I nearly choked on my Diet Coke when I read that. (I was just out of grad school at the time, having had my will to live nearly beaten out of me by acolytes of the various schools of theory--the post-colonial theorists, the Marxist feminists theorists, psychoanalytic Freudian theorists--and the image of any theorist, radical or not, being stopped at the airport, had me guffawing.) My husband G, who, also, until recently, taught English, came across our perennial gold-medal winner a few years ago in a paper about the sanctity of marriage. The line in question read, "You can divorce your spouse, but you cannot kill them." I can't even type those words without cracking up.

I bring this all up, not to embarrass the anonymous students who unwittingly provide hours of amusement and fodder for inside jokes, but because, on the eve of my one year anniversary, I sometimes, reflecting on what G's student wrote, think that I'd rather G kill me than ever leave me. Which is to say, I can't imagine living without him. And I'd prefer not to, if given the choice. (Not that G is a murderer, mind you. I'm using what we call in the biz "hyperbole.")

You see, as we approach our anniversary this Sunday, I'm more madly in love with my husband than ever. This has been an enormously trying year for us. We never imagined that, a year into our marriage, I'd be facing major surgery or that the cloud of cancer would come settle over our new life together. But G has been unwavering in his love and dedication to me. So much so that I can unequivocally say I would not have the strength to have a mastectomy if not for his love. His support empowers me to face tough choices. And knowing that he will love me no matter what my breasts look like or feel like after surgery brings me peace, security, and confidence in both myself and my marriage.

Because of G, I've not had to face BRCA alone. It's his mutation now, too. And he's as committed as I am to beating cancer before it begins. In the last few months, I've found myself apologizing to G that his wife turned out to be a genetic dud, but he seems unfazed. He tells me I'm no mutant in his book and that he'd marry me again in a second. And when he says things like that, I can't imagine ever being with anyone else.

I know marriages can get rocky (we've already been together nearly seven years, and it hasn't always been smooth sailing), but right now, as we approach our anniversary, I can't imagine life without G. Especially with everything we've been through recently. Knowing that he will be there for me, to love me and support me on the other end of surgery, is the best anniversary gift I could ever ask for.

Happy anniversary, baby. I love you.

PS: I just got a beautiful bouquet of flowers delivered to my office! Such a good hubby!

Tuesday, July 21, 2009

On the Unexpected Parallels Between House Hunting and Mastectomies

G and I are house hunting. For the past year or so, I've been keeping an eye on listings and occasionally going to an open house here or there, but in the last several weeks (since we lost power at our shanty for nearly a week following a perfect storm of falling trees, outdated transformers, unresponsive electric companies, and questionably competent landlords) we've gotten serious about our search. We're first time home buyers, and we want to put a contract in before the end of November to take advantage of the Obama tax credit, so time is of the essence.

This weekend, we fell in love with a place. I've fallen in love before, as has G, but this is the first time our hearts simultaneously have gone pitter-patter. As soon as we walked through the door, we looked at each other and knew. This was the ONE. It's an incredible condo on the tenth-floor of a new construction mid-rise with floor to ceiling windows overlooking Lake Michigan. It's everything we want--granite counter tops, stainless steel appliances, in-unit washer and dryer, dual sink vanity, soaking tub--and more. And it's in our price range.

We first saw the condo on Saturday and went back again last night with our realtor. We've "reserved" the unit and, pending any major surprises, will probably put a contract in later this week. I'm unbelievably excited. But I'm so nervous. Last night, I tossed and turned for hours, unable to calm my mind. I couldn't stop thinking about the new condo. And I couldn't help but thinking how sad I'll be to leave our apartment.

A word about our current digs: we've been living there together for more than six years, and its walls are bursting with fond memories. Two summers ago, G even got down on one knee in our living room and asked me to marry him (at least I think he did. He asked me in Spanish. I don't really know why, since neither of us speaks it very well. Regardless, we're married now, so I hope that's what he wanted). But, to be brutally honest, the place is a dump. It sufficed when we we younger and poorer, but every time I look at the air-conditioning unit stuffed into our bedroom window and secured there with an old cutting board and lots of duct tape, I can't help but think it's time for a major upgrade.

But I'm scared. I'm scared of the unknown. We've, to be gross, marked our territory in our current apartment, proverbially peed in every corner. It's OUR place (even though, of course, it belongs to someone else). I can't picture us anywhere else.

The reason I bring this up on this blog is that, surprisingly, the way I feel about moving on from the only home G and I have ever known together has a lot in common with how I feel about having surgery. Both of these major life decisions are overlapping, and I'm realizing I can learn a lot about myself by exploring my anxiety about property ownership and my nerves about breast surgery--and what they have in common.

You see, just as I so desperately want a brand new condo, with central AC and generous cabinet space, I so desperately want brand new boobs, the kind that come without the freakishly high cancer risk. But I'm scared of both those things, too. I can't picture life in this new condo any more than I can picture my body with new breasts. Now that I'm so close to getting both of those things, though, I'm finding I'm reluctant to change, that sometimes the allure of the known can be deceptively comforting in the face of the unknown. But I can't let this govern my choices.

I wrote on Friday about finally making the call to my plastic surgeon. Even though I had made the decision to have a mastectomy months ago, I found it very difficult to actually schedule the surgery. Before, it was just a nebulous idea, an abstraction; today, it is real. Last week, I was just someone "considering" surgery. Today, I'm having it. And I want it. I really do. Last Thursday, I had dinner with S and S, two of my BRCA friends who've each had a PBM (with the same docs I'm using) in the last few months. We gossiped and drank wine, and before it was time to call it a night, they showed me their boobs. They looked fabulous. And I was SO jealous. I wanted boobs like those! I wanted to be done with surgery! And so the next day, I picked up the phone.

I found myself thinking today, what will I feel like when I'm done with surgery? What will it mean to have replaced my faulty breasts with new ones? Will I walk around in a constant state of disbelief that I've voluntarily swapped out healthy (for now) breast tissue for silicon implants? Will I be sad? Will I regret my decision? The same questions, ironically, can be applied to the condo. The truth is, I don't have the answers. But I know what I want. The obstacle is mustering the courage to make sure I get it.

Friday, July 17, 2009

The Final Countdown

We had beer in the boardroom at lunch today, so I find myself late this Friday afternoon drunk at work. Being drunk at work as an adult is a little like being drunk at home when you are a teenager: an alien feeling in a familiar place. (Though, it should be noted that I work in publishing, the original industry of now-frowned upon three-martini lunch; publicists like myself do what we can to keep this tradition alive. It was my boss who showed up with two Heineken pony kegs and told us to get busy boozing. It wasn't the first time and it won't be the last.)

I may be a little lispy and heavy in the eyelids now, but I didn't need liquid courage this morning to do what I've been putting of now for months: I picked up the phone and scheduled my surgery. I'll say that again. I lifted the receiver off the cradle, dialed numbers, and requested that my boobs be removed from my body. Tentatively, this will happen on December 18. Which is five months from tomorrow. Holy shit.

I'm keeping this brief because my typing skills are a bit compromised, but I wanted to put this out there now (because everyone knows that once something is on the internets, it is real). The countdown begins. My natural ta-tas are on their farewell tour. And so is my anxiety. Because five months and two days from now, I won't have to worry 24/7 about breast cancer anymore.

Tuesday, July 14, 2009

Sky Rockets in Flight, Cape Cod Delight

I spent the 4th of July holiday last weekend high above the waters of Cotuit Bay at the Cape Cod retreat of my good friend N's family. (Astute readers will recall N from her surprise visit to cheer up me and my boobs in May.) On a steep cliff overlooking the ocean, the rambling house--built in the mid-1800s and supposedly haunted--has an otherworldly quality to it; it welcomes you and envelops you and you never want to leave. It has that wonderful haphazardness to its layout characteristic of a house that's been built on and modernized throughout the years; there are so many rooms and nooks and crannies to explore. For a child, it must be a hide-and-seek fantasy land; to me, it was a maze of good napping zones. I kept finding new places I wanted to curl up with a book. (Oh, and it was a home filled with books! I could have spent a month just reading through their library.) I spent most of the weekend flitting--barefoot and bathing-suited--between the pool and the porch, leaving only to attend a parade and to visit my dear friend A and his family at their Cape house across the bay.

I've known A since we were both under three feet tall. He now tops out at well over six-five, making him one of the only people (my brother notwithstanding) who can make me fell like a shrimp at five-eleven. A and I attended school together, grades kindergarten through twelve, and he holds the distinction of being the only person who has made me laugh so hard I've peed my pants--twice. Two years ago, A got sick. He developed a rare form of bone cancer--osteosarcoma--that typically affects children; there are fewer than 1000 cases of it reported each year, and of those, half occur in patients under the age of 15. At 29, A fell ill with a disease that few people his age ever suffer from.

A still lives near where we grew up, and I've settled 800 miles west, so I had seen him only twice since he got sick: once at Christmastime, when he was bald from chemo and emaciated from the drugs, and again at my friend K's wedding, when his hair was coming back and his spirit was returning. When I saw him last weekend, he looked fabulous--happy and filled-out, his dimples deep once more. A is one of the funniest people I've ever met; his humor is legendary. And because I conflate him with his vibrant personality, seeing him stripped of that life and love and laughter during his cancer battle scared the shit out of me. A is all energy, and when cancer took that away from him, I was afraid we might lose him. (It's still a thought that causes me to shiver.) But luckily, we didn't. He is in remission but under close surveillance.

I had been wanting to share with A my own battle--my BRCA status, my decision to pursue surgery--because I knew he'd understand. Our visit--brief though it may have been, my feet hanging over the side of his pool, playing with an inflatable raft in the water--was so different, so much more about things A and I would have never imagined having common ground on, that we stopped over conversation mid-breath more than once to say, "Can you believe our lives now? So affected by cancer?" In the past, A and I never got deeper than analyzing the meaning of a particularly oblique Phish lyric. But we were changed now. We spoke the common language of cancer.

I was surprised to feel a bit meek around A. In my daily life, I'm the most tragic figure I know--a healthy women who is doomed to breast cancer unless she takes drastic measures. But around A, I was the lucky one. He was the cancer survivor; I was just the wimp who wants so badly to avoid the disease she'll do anything to stop it. I don't want to be a cancer survivor; I don't want to get it in the first place! And, luckily, I have options. A's mother is a breast surgeon, and she spoke candidly to me that afternoon not as a patient but as her son's friend; she told me I was doing the right thing. That meant so much to me coming from a woman who deals with breast health everyday; one of the most frustrating aspects of being a BRCA mutant is that so few people will actually tell you what to do (or even what they would do, or recommend for their wife or daughter). But A's mom told me I wasn't crazy, that this is for the best, and that I'll be happy to be done with the fear and anxiety. And she's right. I am doing the right thing--for me at least.

But here was A. He didn't have a choice. He didn't know he would be, at 31, a survivor. He had no forewarning. And to be stricken by such a rare cancer! I have a whole network of BRCA babes I can turn to for guidance, support, advice; he had no one. And yet, as I sat there feeling silly--worrying that A must hate me for the knowledge I have, the prescience he didn't--I knew he would never want me to go through what he did, the surgeries, the treatment, the uncertainty. And he told me he thought I was awesome, brave, badass for doing what I'm doing. But he is really the rockstar, not me. He is on the other side of a war I hope never to fight because I'm so scared of dying on the battlefield.

Our conversation coalesced a lot of disparate thoughts I've had about that silent distance between survivors and previvors; how do they really feel about us? And where do we fit in? They are part of a club I very much do not want to be admitted into, and yet most of them, if they had the choice, wouldn't be a member either. My visit with A made me realize, though, that we are probably more similar than different; he gets me in a way that few people do. And I want to erect statues, dedicate great works of art, write folk songs to honor his enormous bravery. A is a role model for me in my journey, even though we are taking radically different paths. He triumphed despite his cancer, and I will flourish despite my genes.

Thursday, July 9, 2009

Why My Boobs Must Go

My husband and I are crazy cat people. We have developed special cat voices we use to narrate the innermost thoughts of our four felines and have constructed for them complicated personalities (Annie likes bubblegum pop and wants us to drop her off around the corner from the mall) and life stories (Malcolm is a laid-off steelworker from Gary, Indiana/escaped black bear from a traveling Russian circus). Our persons and possessions are forever layered in cat hair; we would need to sweep every fifteen minutes to keep our place clean. Nevertheless, life with cats is joyous and dirty, but we would be less happy people without them.

Except when animals attack.

Given that we've anthropomorphized the beast out of them, it's always a bit disconcerting when our furry babes act, well, like scaredy cats. This occurs most frequently prior to trips to V-E-T (nothing could be funnier than watching Angus splay his legs so that, geometrically, he does not fit through the door of his carrier); Malcolm, at all other times a bad-ass, whines like a tortured pig. In our apartment, they are kings (and queens) of their castle. But the moment you introduce them to foreign world outside the front door, they go into panic mode.

I forgot all of this Tuesday night when I got the brilliant idea to carry Annie downstairs to greet G at the front door (I had his keys, he rang the doorbell, I thought it would warm his heart to be met after a long day at the office by his favorite ladies). We got down one flight of stairs (we're on the third of three floors) before Annie started revving like a motorcycle in first gear. By the time we rounded the corner, she was howling in a mournful tone that evokes the hopelessness she must experience as she sits hunched in her cat carrier in the backseat of the car on the way to get shots. When we got downstairs, she roared cartoonishly and began flailing and spasming, as if possessed. Then she tore into me.

I bore the brunt of the attack on the inside of my elbow. She clawed me in such a way that the punctures (of which there were only two, lest you imagine some sort of bloodbath in my vestibule) looked disconcertingly like track marks. (I joked to a friend later that I had picked up an intravenous drug habit over the weekend in Cape Cod, a hot bed of heroin use.) I managed to open the door for G, who greeted me with a "What the hell were you thinking?" instead of the kiss I'd imagined, and, arms extended, zombie-like, carried the convulsing, howling brat back upstairs and into the apartment.

And then I started to panic. Two friends in recent times have wound up in hospital because of cat bites; both trips to the emergency room came with admonishments that "If you had waited any longer, this infection could have gotten ugly." This wasn't a bite, sure, but cats' claws must be equally, if not more dirty than their mouths, right? I mean, I've seen their litter box. Surely this is bad, right? She broke the skin; I'm hit. A thousand tales of animal/human interactions that ended badly flashed before me: I imagine cat toe-nail toxins entering my bloodstream, travelling to my heart, stopping its beat. Am I infected? Is my arm going to fall off? Am I going to die? I laid down. G brought me ice water. Annie curled up in the crook of my good arm.

Fast forward two days. I'm still alive. My arm is still attached to my body. Annie seems to have forgotten the whole ordeal. My wounds are healing nicely. And the story is now a parable: this is why I'm unfit for a life with illness and death looming, ever-present, before me. I think worst-case-scenario. I worry about stupid shit. I am a hypochondriac.

Now imagine the immense fear that comes with having ticking time bombs for boobs. Imagine having the panic that comes from possibly infected cat scratches multiplied by a billion. That's why my boobs have to go. Because if I'm that afraid of getting cat-scratch fever (cue the Nuge), imagine how scared I am of getting cancer.