Monday, September 28, 2009

Mark your calendars

Hard to believe, but September is on its way out. Coming soon: October and Breast Cancer Awareness Month. Mark your calendars and join us next month!

Here's the link to register. See you there!

Friday, September 18, 2009

T-minus 3 months

Today marks exactly three months until my surgery. Or, to put it a different way, my breasts have 90 days to live.

For the past few weeks, I've been blissfully at peace with my decision, so much so that I find myself thinking, why on earth did I ever make such a big deal about this in the first place? They're just breasts. Big whoop. I'll have new (and some might say, given my natural asymmetry, improved) "boobs" the moment I wake up from surgery; it's just the insides that will have changed. Such a trade is so worth it to evade the specter of cancer.

Which brings me, of course, to Patrick Swayze (seamless transition, no?). I'd be massively remiss not to note his passing here on my blog. And it's not really such a stretch to do so, given that one of the cancers associated with the BRCA2 mutation is pancreatic. It's a terrifying disease that usually portends a quick death and rarely spares its victims. G's uncle passed away from pancreatic cancer a few years back, and I know he is haunted by that history and fears a similar fate (though he has no genetic reason to suspect so). Patrick Swayze fought a very public battle against the disease, and though he ultimately lost, I'm grateful that he lived in the spotlight as a cancer patient (even if I disagreed with his choice to continue smoking -- a known cause of pancreatic cancer -- during his treatments). Too often, we mere mortals deify celebrities and fantasize about how much better our lives would be if we were rich and famous like they are. But movie stars are, of course, human too, and they get sick. And sometimes die. When someone like that -- someone who is larger than life -- so publicly withers into a shell of his former self, we're all reminded of our own fragile mortality, and how important it is to value our health while we have it.

My relationship to Patrick Swayze began, like most of my peers (ie: girls near or under the age of 10 in 1987), with the film "Dirty Dancing." My parents would not allow me to see it, which, of course, only made me want to see it more. (I laugh about this now, given how tame the movie is compared to, say, most Britney Spears videos.) So when my friend M showed it at her slumber party, I felt half guilty and half pleased I was breaking the rules. There is a split second shot of Patrick Swayze's butt as he he gets out of bed after doing it with Jennifer Grey, and the girls and I rewound and paused and rewound and paused it so much I'm surprised we didn't break the tape. We were so young, so unaware of what sex or love or lust was, so prepubescent, and yet we still recognized Johnny Castle's unmistakable sex appeal.

I was teaching on Monday night when one of my students told me Patrick Swayze had died, and when I got home, G popped in the DVD of his favorite of Swayze's ouvre: Road House. It's still hard to believe that a man like Dalton could ever be humbled by disease, but cancer is the great equalizer: it's an equal opportunity killer. Even our icons can succumb.

Cancer, even the most curable varieties, is an unwelcome visitor to anyone's life, and I feel so lucky to have the opportunity to block its access to my body. Very few people have that option. And if I chose not to have surgery and one day got sick, I don't know if I could forgive myself for not taking the chance when I could. So in reflecting about all of this, especially following the cancer death of one of my childhood hearthrobs, I'm reassured I'm making the right choice.

In honor of Patrick Swayze, let's remember him like he used to be. With amazing (and voluminous) hair.

Thursday, September 10, 2009

Heath Care Reform Now!

Spoiler alert: This post gets all political and stuff. I'm a hybrid-driving, soy-latte drinking, NPR donating liberal. I'm pro-health care reform and anti-stupidity. I apologize in advance if this post offends anyone.

I like our President. In fact, sometimes, like last night, when he is speechifying and looking so good doing it, I like him like him. I was in Grant Park the night he accepted the job and, like everyone else who shut down the streets of downtown Chicago celebrating, will never forget the joy, exhilaration, and, yes, hope I felt that night.

Things haven't been going too great recently for the Prez, and his health care reform plan has divided the nation. Across the country, ill-informed citizens have gathered at town halls to denounce phantom measures in the bill (my favorite: mandated abortions -- how exactly does that work?) and rally against big scary "socialist" Obamacare and its grandma-plug pullin', illegal-immigrant-protectin' ways, all while waving assault rifles and shushing dissent. Intelligent discourse on the subject has been critically depleted, and instead of thoughtful discussion about what actually is in the bill, we're shouting at each other about unicorns, Sasquatches, death panels, and other fictional constructs. The left has offered some characteristically muted rebuttals, but it's it the Joe Wilsons of the world who have stolen the spotlight.

The impassioned protests and mobilization of the far right against health care reform has one goal: keep everything just like it is because (ostensibly) everything is just fine. To me, the fervent defense of the insurance industry as it currently exists would have seemed as unlikely as a protective rally in favor of, say, the IRS, but apparently some people out there feel very strongly about keeping the status quo (and are even willing to lose digits over it). Most of these people, naturally, are insured, whether through private companies or Medicare (there's a head-scratcher: people insured by a government-run bureaucracy protesting government-run health care). Unfortunately, the stories and voices of the uninsured have been lost in the cacophony.

I'm for health care reform, and I have health insurance. More importantly, I have really really good health insurance. So far this year, I've racked up nearly ten thousand dollars in charges for doctors appointments, tests, and scans, and I haven't paid a penny for it. (I haven't yet been approved for my surgery this December, but I'm optimistic.) Moreover, since my plan allows for out-of-network care, I have had the opportunity to consult with the best doctors and chose the exact team I want to do my surgery in exactly the way I want it (I didn't realize what a luxury this was until I got an email from a fellow BRCA babe who told me she couldn't see the doctors she wants for the kind of procedure she wants because her coverage won't let her go out of state). I'm very lucky.

But in another way I'm not. I have, despite what legislation passed to prevent discrimination might intend, what could be considered by private insurers a preexisting condition (and if my mutated genes ever do actually cause cancer that I manage to survive, well, there's your preexisting condition right there). Right now I'm covered under a group policy and cannot be dropped because of my BRCA status, but if my husband and I ever decided to start our own business, for example, and purchase individual policies, I would likely run into trouble.

To me, one of the strongest reasons -- especially in the BRCA, breast cancer, and ovarian cancer communities -- to rally for health care reform is that it eliminates discrimination based on preexisting conditions; insurance companies will not longer be able to deny coverage or claims based on medical history. This is a real benefit, and one that far too few people are shouting about. (Komen has more about aspects of reform of particular interest to breast cancer patients and survivors.) I can't even begin to imagine what this journey would be like if I was without insurance; it almost brings tears to my eyes to imagine women without access to preventative surgeries, let alone women with breast cancer who can't afford treatment.

The health care reform fight has angered me (especially when I read about groups trying to scare breast cancer patients with hogwash about Obama's plan restricting access to life-saving medications and technologies; I'll let Rachel Maddow get all irate/incredulous for me) and saddened me. But it's also politicized me. We all have a stake in this, and just because I'm lucky enough to have health care (and good health care at that) doesn't mean I will protest change. For me, so far, the system has worked. But for so many others, it has failed them. I believe everyone should have access to the kind of care I do; it's time we fix our broken health care system.

Thursday, September 3, 2009

Happy Birthday, Dad

Today is my dad's birthday. I had intended to write a similar tribute to the one that follows on Father's Day, but I was without power/internet/sanity for nearly a week then and plans changed. So indulge me as I take advantage of this once-yearly occasion to say what I wanted to say then.

I am very much my father's daughter. We have the same long limbs and solid torso, the same substantial nose, the same unfortunate skin. But in addition to the many physical attributes we share, we are also kindred intellectual spirits: voracious readers, inquisitive observers, and spirited political commentators. When I was younger, I remember thinking my dad was the smartest person in the whole world; I would ask him endless question not so much because I wanted to know the answers but to see how far his knowledge reached. It is one of my proudest accomplishments that, as an adult, I can hold my own in conversation with my father and even, occasionally, teach him a thing or two.

Words have not yet been invented to describe the extent of my father's generosity; he truly lives to provide for his family. And because of this, because of his giving nature, not only have I been afforded the opportunity to make some of my most prized memories--summers at the beach house, semesters in Europe, the wedding of my dreams (at which both he and my mother walked me down the aisle)--but also I have been given the privilege to find who I am, to follow my bliss, and discover my passions. Everything he has given me has helped define who I am; his example as parent gives me something to aspire to.

Over the years, my father has given me many gifts. And this year, he gave me the gift of empowerment, action, and knowledge. When he tested positive for the mutated BRCA2 gene on Christmas Eve last year, he insisted I follow suit. And I did. And the result I got -- that I, too, carry in every cell in my body malfunctioning code than thwarts tumor suppression -- was not a curse; it was a blessing. This knowledge has allowed me to taken steps to ensure I'll never get the breast cancers than have been plaguing women in our family for so many generations. When I learned my results, one of the first things I said to my dad was, "I want you to know I don't blame you. I'm not mad you gave this to me." I hope everyday he does not carry the burden of guilt.

My father and I made a new memory this Spring when he accompanied me to Orlando to attend FORCE's annual meeting; Dad was one of only a handful of men in a sea of women -- some bald from chemo, broken down by cancer -- but he was there as a previvor himself, supporting his previvor daughter, learning about the gene we had inherited. It was an overwhelming experience, but it brought us closer than we've been in years. Being bonded by BRCA, my dad and I formed a team. And there is no one I'd rather have on my side.

So on this, his 62nd birthday, I want to thank him for all he has given me (BRCA included). And I want to toast my father's continued good health. Happy Birthday, Dad. Here's to many, many more.

Tuesday, September 1, 2009

Previvors vs. Survivors in the World Series of Love

"I have a confession to make," I told my husband recently. "All I do all day is think about boobs." He paused. "That's OK," he said. "Me too." Rimshot.

Remember that calm I brought back from vacation last month? Gone. Maybe it's because it's September, somehow. Summer is over. I'm teaching again. The months will fall away as the leaves wither on the branches and suddenly it will be time to give up my boobs. And I'm getting scared. (Apropos of this, I remember feeling similar anxiety -- though more of a giddy sort -- as my wedding approached. One day a few weeks out, as I put a container of yogurt in the fridge at work, I noticed the expiration date: it was after my wedding. I said aloud, to no one in particular, "By the time this yogurt expires, I'll be a married woman." So when it is possible to buy perishable items with an expiration date after my surgery -- "This yogurt will last longer than my boobs" -- that's when I know it's time to freak out.)

I've been asked to deliver a keynote address (doesn't that sound fancy?) at a fundraising event for FORCE next month at my alma mater. I'm certainly not shy about being BRCA positive, but standing in front of a room full of hundreds of people and actually opening my mouth and having words (many of them describing my boobs) come out is a different beast entirely. This blog allows me a modicum of anonymity. Next month I'll don a pink dress (because it's illegal to talk about breast cancer in any other color), stand in front of a group of undergrads and say, "Hey toots, I was once like you. Naive. Not a care in the world. Now I'm about to cut off my knockers." (Well, I probably won't say exactly that. I'll come up with something good; it'll bring the house down. Not a dry eye in the place. It will be better than Cats.) So naturally, with my impending speaking duties and my ever-nearing surgery, it's all boobs, all day long on the drive-in theater of my mind.

October, in addition to being the month of my glorious birth, is Breast Cancer Awareness Month (hence the timing of the fundraiser), and, in taking notes for my speech, I've been trying to figure our how I fit in to the festivities. There is a robust debate (love fest? reach around?) going on on the FORCE message boards about previvors (folks like me who are survivors of a predisposition) and breast cancer survivors and who is more brave. The original poster, a breast cancer survivor, wrote that she thinks the previvors are the real heroes. And then a chorus of previvors (yours truly included) chimed in and said, "No, you are the real hero!" And then they wrote, "No, you're better!" And we wrote, "No, I love you more!" And then it just devolved into a self-loathing/mutual love fest.

But the conversation raises some interesting points. Namely this: Previvors, despite the fact we're escaping the disease, might have it harder after all. Previvors never get the kind of support that breast cancer survivors do. People understand breast cancer survivors' decisions to have surgery; people look at previvors like we're batshit cray cray (or they say insensitive things about free boob jobs. Yeah. No.). Previvors never really know for certain if we are making the right decision; survivors don't have a choice. Outsiders will question previvors' choices, often right in front of our faces; no one would dare do such a thing to a breast cancer survivor. Breast cancer survivors get spoiled; we get uncomfortable stares and hesitant, monosyllabic grunts.

Part of outsiders' uncertainty about how to process our condition ("Wait, she's not sick and may not ever get sick but she's having surgery...") may be partially reflective of our own uncertainty ("Wait, I'm not sick yet and may not ever get sick but I'm having surgery..."). Or it could be a education thing: there are far fewer previvors out there than breast cancer survivors, and maybe when people encounter a rare specimen such as ourselves, they aren't sure what genus or species we belong to. Whatever it is, there is no question that previvors have to deal with nagging doubts--from others, from yourself--in a way breast cancer survivors don't.

Or maybe it's this: as humans, we have an incredible ability to think ourselves exceptional. We buy lottery tickets not because we know we'll lose, but because we think we'll be the exception to the rule! We self-publish our novels after they've been rejected by every agent in the industry because we'll be the one author plucked from obscurity and catapulted onto the national literary scene! We fantasize about bumping into Brad Pitt (or that vampire kid from Twilight, or Jack White, or Dr. Sanjay Gupta) in dark alley because once he looks into our eyes, we'll run off into the sunset together and have really acrobatic sex and live happily every after! This works in reverse, too. We know that flying is statistically very safe, but some people swear it off entirely, saying, "Oh, with my luck, I'll be the unlucky one" (this is also the subject of an Alanis Morrisette song).

Previvors don't do this; we are not optimistic about our chances. We're given a statistic, and that's this: we have an 85% lifetime risk of developing breast cancer. And this is what we hear: "You have an 85% lifetime risk of developing breast cancer." Outsiders, however, tend to hear: "You have a 15% lifetime chance of not getting cancer," and they say, "Hey, did you hear that? You might be one of the lucky ones." And we say, "I'm not counting on it." And then we go and cut off our ladyparts and people can't understand it, because human nature tends towards optimism even in statistically unlikely situations. Maybe we're going against human nature. And maybe that's why we get shat upon. Whatever the case may be, I didn't sign up to be a previvor any more than a breast cancer survivor chose her condition. And that we have in common. And that, at the very least, everyone can understand.

I have incredible admiration for survivors (who doesn't?) and have written many times of the awe I feel for their bravery. But I was so heartened to read the kind words from survivors about previvors like me. At least in the breast cancer community, we can all agree that we're all worthy of admiration. Now only if only we could help convey that notion to the general public, I think we'd be getting somewhere. So in conclusion, this Breast Cancer Awareness month, and maybe even before, be kind to your local previvor. They hurt, too.