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!

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.

Patrick Swayze - Chippendale
Uploaded by tressage. -

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.

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.

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.

Narrow Escape Artist

Last summer, about three weeks after my wedding, I got offered a new job. (I say this as if it fell from the sky, but in reality, I applied, I interviewed, and then I got the offer; in other words, I chased this.) It was an amazing opportunity: a respected position at a prestigious university at a generous salary that would keep me in designer shoes for a long time to come. The only problem was the job was approximately 988 miles east of everything I knew and loved. Taking this job would mean leaving my beloved Chicago for a city where I knew only a few people and that I had only visited a handful of times. To complicate matters, they wanted me to start right away, and since G had just begun teaching, he wouldn't have been able to join me until the end of the semester. So I was staring down three months, alone, in a strange city, three weeks into my marriage.

But it was such an enticing opportunity, I agonized for weeks over whether to accept. I negotiated, I bargained, I wrangled more money from the offerer (more shoes!) and funds for relocation, I put a deposit on a furnished short-term rental. And then just when we thought we were ready to make the commitment -- put in notice at work, book a moving van, plan the going away party -- G and I balked. We started to crunch the numbers. It turned out that the big salary would not go as far on the I-95 corridor as it would in the simple ol' Midwest. And even though I'd be pulling in big(ger) bucks, G would have to look for a new gig of his own come January and there was no guarantee he would find something right away. After ten sleepless nights and purgatorial foggy days, we decided to stay put. I parlayed the offer into a sizable raise at my current job. And then I turned those other guys, with their ivy-covered walls, down and nearly collapsed of relief.

Right after this happened, the stock market tanked and took the economy with it. It turns out I got the last of any raises that would be offered at my company for a good long while. And then, in January, G scored an incredible new job with a salary that put that east-coast offer I had gotten to shame. So, moral of the story? I think we made the right choice.

This suspicion was recently confirmed--a thousand times over--when I learned that earlier this summer, the university, whose endowment had been ravaged by the tumbling market, had begun lay-offs across its campus. I knew that personnel cuts affected the department I had been invited to join particularly harshly, but I didn't know until last week -- when I was traveling for work and gossiping about the state of the industry with some media folks -- how pervasive the lay-offs had been: of the half-dozen folks who would have been my colleagues, only one remains employed. So guess who would have been a victim of that ax? Me. The job I was offered was eliminated. Not even the head of the department, who pursued me so doggedly, survived. When I heard the news, I marveled at how narrowly escaped disaster.

What does this have to do with boobs, you might ask. (To which I might answer, haven't I convinced you yet of my singular ability to connect seemingly unrelated events to my bosoms?) Well, I'll tell ya. The slim margin by which I averted potential unemployment (to say nothing of lost health insurance... I shudder to even think) reminds me a lot of the escape route I've been offered to cheat my genetic fate. If I had taken that job I would have lost it; if I hadn't taken that BRCA test, I could have been blindsided by breast cancer. When I turned down that job, I struggled for a long time to come to terms with my decision; I didn't have the benefit of hindsight to assure me I made the right choice. Because the thing is, I didn't know when I turned down the job it would go bad so quick. And this December, I don't know whether, when they cut into my flesh, they'll find perfectly healthy breast tissue or lumps and bumps that have already started to turn ugly. Chances are the pathology will come back clear and I'll never know what would have happened to my breasts if I had kept them.

But just as I did when it came to turning down that job last summer, when it comes to choosing a PBM I've weighed my options, made of lists of pros and cons, consulted with my husband and family, and reached a decision. And I'm trusting my gut here. On the job front, things worked out well for us: I make more money, G has a great new gig, and, most importantly, we are both gainfully employed in positions we like in a city we love even more. I can say almost for certain that almost none of that would be the case if we had made the move out east. I won't know what life would be like if I kept my breasts, but if this story represents anything larger -- or suggests I have a gift for getting out right before things go bad -- I want to turn down the offer of breast cancer just like I did that job. Because I don't want to be the victim of a lay off any more than I want to be stricken by disease. And I'm so glad I have a choice. Here's to hoping it's the right one.

Thoughts on Body Modification, Aging, and BRCA

I was at a rock concert in college when the girl standing next to me, who was on acid, turned to me and, with a kind of panicked acceptance that usually accompanies great truths revealed by mind-altering substances, said “My arm is not my arm. Gotta go. Bye.” She abruptly left, apparently to search for her missing arm and return the one now attached to her torso to its rightful owner.

I think about this from time to time because I sometimes worry that, post-mastectomy and reconstruction, I will look down at my new bosom and think, “My boobs are not my boobs. Gotta go. Bye.” And then *poof* like a cartoon, I’ll disappear in a cloud of smoke, leaving behind a skin suit shaped like me—-eye holes empty-—to collapse, deflated, unoccupied, on the ground.

What will it feel like to no longer recognize your own body? Will I feel panic? Alienation? Regret? Will I learn to accept the changes I made to it? Or will I always feel like something is just off?

I have a recurring dream in which I get a large, poorly drawn, and frequently thematically unfortunate tattoo. The design and placement are different every time—-sometimes it’s a childish rendering of sea monster across my torso, sometimes it’s misspelled words and doodles on my upper back-—but the feeling is always the same: enormous and immediate regret, so acute I can feel it in my sleep, followed by unspeakable relief upon waking. I pull up my sweat soaked t-shirt and check my stomach: no tattoo. And I collapse onto the pillows and remind myself it was only a dream.

It's not like I have a problem with tattoos, even. I mean, I have a tattoo. It’s a small, tasteful line drawing at the base of my spine. I got it a week before I graduated college with my best friend, who also got a similar design in a similar spot. In the decade or so since I’ve been inked, this spot on a woman’s body has become a popular location for tattoos (and to think I thought I came up with it all by myself lo those many years ago), and what goes there is often called pejoratively a “tramp stamp.” Despite all this, I don't regret my choice and have fond memories of the experience and warm feelings about the bond it represents with my friend, who now lives hundreds of miles away and in a different world-—filled with babies and diapers and such-—entirely.

But clearly, I have anxiety about body modification, no matter how enthusiastically I engaged in it in my metallic youth (I could have set off an airport metal detector a few years back when my face was littered with piercings). And I have ambivalent feelings about plastic surgery. So having to deal with both now is a bit of a mindfuck.

I keep asking myself why I would voluntarily—-electively, as the insurance companies might consider it—-alter my body-—remove parts and substitute synthetic facsimiles-—leaving scars both physical and psychological. The short answer is that I’d rather have scars from a mastectomy than a chemo port. But the longer answer involves considerations of body image, self esteem, and confidence. And to tease out those implications, it helps to think about how my body has changed in both ways I’ve chosen and ways I’ve had no control over.

The tattoo is permanent, of course, as are the scars left behind by the piercings, but these are physical reminders of willing choices I made. There are marks on my body left behind by afflictions and mistakes I’d rather forget: these are the artifacts of choices I didn’t make. I’m thinking chiefly of the acne scars on my cheeks: the bearded legacy of a pimply youth, my skin no longer breaks out, but it announces to all who sees it its history of dermatological disaster. Lest I spend my life walking around with a paper bag over my head, I’ve had to find the confidence to literally face the world despite my imperfect complexion, and for the most part I don’t let it get me down (but if I could swap my ragged flesh for porcelain perfection, I would in a heartbeat). There are other marks, too, mostly shaving related: the pigmentless strip of skin on my left shin when the razor slipped in the bath in middle school, the isthmus of scar tissue on my thigh from a particularly nasty cut in high school. And of course there are the stretch marks, which, having not yet been pregnant, I can only imagine are the dress rehearsal for the angry, tentacled cracks in the foundation yet to come.

Then there are the ways women’s bodies change as we age, a process of unfortunate dropoping and uneven bulging which now, as I enter my thirties, is a fact of my life: the crow’s feet that gather at the corners of my eyes, the horizontal ass migration, the disastrous effects of gravity on the hangy things. Like all women, I have this idea in my head that my body was always much better off [insert the date of some time in the past], when in truth, at that time, I was actually pretty unhappy about the state of my ass or thighs or hair. The thing is, our bodies are changing all the time: sometimes we help them (when we get tattoos or nips or tucks) and sometimes we’re victims of acne or aging.

So where does a double prophylactic mastectomy fall on this spectrum? I hope it falls more on the end of “things I do to myself”--and the attendant pride that comes from making a choice--than “things that happen to my body”--and the helpless anger that follows from things you can't control. Because I have agency over it: it’s my choice, it’s my scars, it’s my peace of mind. I don’t think I’ll ever be as fond of my mastectomy scars as I am of my tattoo, but perhaps I’ll have less ashamed of them than, say, the pock marks on my cheeks. After all, like the holes left behind by my facial piercing spree of the late-twentieth century, the scars on my reconstructed breasts will tell a story. One, I’m hoping, will have a happy ending.