Thursday, May 28, 2009

Happy birthday BRCA

I read somewhere (a blog, actually, and we all know how trustworthy those can be -- never trust anything you read on the internets) that yesterday was the 15th anniversary of the discovery of the BRCA gene.(What? You didn't get an invitation to the birthday bash? Yeah, me neither.)

Oh, to harken back to the halcyon days of May 1994! Pearl Jam topped the charts, the salacious backbiting on Melrose Place had us glued to our televisions on Wednesday nights, and Kurt Cobain was newly dead. I was 15, finishing up my sophomore year of high school, preparing for another summer at the beach, learning to drive. I was completely unaware that scientists were racing to decode the human genome and, with it, the genes that cause hereditary cancers. I had missed this issue of Newsweek, published the previous December (my family, to be fair, were always, and are still to this day, Time magazine subscribers. We also buy Ford cars and Crest toothpaste. We're brand-loyal like that). And aside from my maternal grandmother's bout with breast cancer in the 1980s, my life was gloriously free from concerns about disease, death, and genetic destiny.

But even then, even before they has a test for it, even before they knew what they were looking for, I unknowingly carried the breast cancer gene. (This is mind-blowing to consider: when I learned about my status, my first instinct was to think back to a happy moment before I had the gene, just like someone who gets sick might look back longingly at a time before he or she surrendered to disease. But there is no moment in my life when I wasn't a gene carrier: I was born one and I'll die one, but for the first thirty years of my life, I didn't know I was one. And that's astonishing. So when I think back to happy times, like my wedding last summer, I don't think of those memories as snapshots from a time "before I got BRCA" but as stills from a film about my life "before I knew.") And now 15 years after the discovery of the gene, I have been tested for it, I've confirmed I'm a carrier, and I've started to consider my options to reduce my risk of cancer. I'm living proof of the impact of the inexorable march of scientific progress: in my short lifetime, I've already benefited from genomic advances that probably sounded like mere science fiction way back when I was born.

And what more is to come? It's dizzying to imagine the gene therapies and the DNA repair agents (not to mention the futuristic clothes we'll wear and the moving sidewalks we'll walk on) of the future. I feel lucky to be alive during this era of exponential discovery, but I worry that the choices I make today, like having a prophylactic mastectomy or making use of preimplantation genetic diagnosis, will seem barbaric and medieval just 15 years hence. But belief in better future hardly resolves the conundrums of an uncertain present. I'm thankful for the knowledge I have about my genetic predisposition toward breast cancer, but I'm also grateful for those many years of blissful ignorance. I can't imagine what my teenage self would have done with this knowledge. (I probably would have slammed my bedroom door and turned up the volume on the Reality Bites soundtrack -- oh, how I loved that movie. Having a moment here realizing it's 15 years old. Give me a sec. OK. Deep breath. I still love you, Troy Dyer!)

So here's to you, BRCA, and the talented scientists who discovered you. You've turned my life upside down, but I don't fault you. I'm just glad I found out about you before you started causing malignancies in my mammaries. And because of what happened 15 years ago, I can make better choices about how to coexist peacefully with you, just like I did all that time before we were introduced.

Wednesday, May 27, 2009

Myraid Out Of My Genes!

When patients get bad news from their doctors, they often seek second opinions before launching into frequently expensive, invasive, and painful treatments. But when I learned I was a carrier of the BRCA2 mutation, I wasn't able to access a second opinion. I couldn't send my blood out to another testing center for confirmation of the presence of the deleterious gene. Why? Because the company that tested my blood OWNS THE PATENT ON THE BRCA1 AND 2 GENES. You read that right. They don't own the patent on the technology behind the test; they own the gene.

The company in question, Myriad, based in Salt Lake City, Utah, is now being sued by the American Civil Liberties Union. The lawsuit, filed May 12, argues that gene patents are unconstitutional. In addition to hindering research, the patents allow Myriad to operate as a monopoly, setting the price of the gene test out of the reach of people who need it most. (The test costs about $3000; luckily, insurance covered most of the cost of my test because my father was already known to be a carrier.)

Needless to say, I'm thrilled about the turn of events. (Myraid Genetics had a table in the exhibits hall at the FORCE conference last week, and when a representative tried to strike up conversation with me, I snapped gleefully, "Oh! You are being sued!") Not only does the lawsuit put BRCA in the news (where, hopefully more people will learn about it and those with family histories will ask their doctors about it) but it also highlights the inequality in care available to poor and minority communities in this country. Even if I didn't have insurance, I, luckily, would have been able to afford the test. But there are so many other women out there for whom the test would be out of their financial reach. With so many uninsured women forgoing routine mammograms and other crucial screening tests, breast cancer too often kills in communities whose barriers to care are the highest. If the ACLU sucessfully argues that Myriad's gene patents are illegal, competition can drive down cost and more families can access the test, allowing them make important decisions about their current and future health.

These patents, and the lawsuit, impact everyone who is affected by hereditary cancer. You can read much more about the ACLU's efforts here. If you feel passionately that companies should not have the right to own part of the human genome, consider signing this message of support. And check out the thoughts of Joanna Rudnick, director of the documentary In the Family, over at Huffington Post. Or, at the very least, watch this video below.

Tuesday, May 26, 2009

Today I Met the Man I'm Going to Have Reconstruct My Boobs

Actually, I met Dr. F on Saturday (and I would have blogged about it then, but my home interwebbing is down, hopefully to be fixed today, as G is standing by for the cable guy, having taken a day off from work to attend to such things, as well as our car, which has become stubborn about braking and accelerating -- bonus househubby action: when we spoke a few moments ago, G said he was waiting for the kitchen floor to dry. Because he had mopped it. Le swoon). More correctly, I met Dr. F two weeks ago in Florida at the FORCE conference. But I officially consulted with him Saturday, and I'm this/close to signing up his services.

The process of selecting surgeons to scoop out my ladyfats and reconfigure them has been arduous. The surgery I'm considering -- prophylactic bilateral mastectomy, for those who have been dozing -- is performed by a dynamic duo of doctors: a breast surgeon (expert at the scoopage) and a plastic surgeon (expert at the perky boobage). That means I have consulted now with five different surgeons (my sixth and final appointment, with the surgeon who works most closely with Dr. F -- who is a plastic surgeon -- is scheduled for next week). The choice hasn't been easy: I've left each of my appointments imagining that I could see myself going with that doctor. (And having so many choices, so many options, so much freedom and leeway and latitude, can be as much a curse as it is a blessing.) But ultimately, Dr. F (and for those who are interested in hearing more about him, including juicy details like his full last name, can email me; I don't want this blog entry to turn into an advertisement for his services) can do everything I want: he will put the incisions under my boobs, where I want them; he will preserve my nipple; and he specializes in one-step procedures.

(A brief explanation: traditionally, these operations have been completed in two steps. After the mastectomy, temporary "expanders" are placed under the chest muscle and gradually, over the course of many weeks, inflated until they reach the desired size. A second "exchange surgery" then takes place, wherein the expanders are swapped out for permanent implants. This process can take up to five months. Check out Lianne's photo journal of her expansion process here. The so-called one-step process is newer; instead of expanders, implants are immediately inserted post-mastectomy. Rebbecca runs an indispensable site dedicated to the one-step process.)

To settle on a surgeon, I've adopted and modified Goldilocks's system of trial and judgment. The first plastic surgeon was too stabby (he wanted to put the incision straight across my breast); the second plastic surgeon was too green (his specialty is microsurgery, not implants); but Dr. F was just right. In addition to being dedicated to the BRCA community--none of the other surgeons I consulted with bothered to come to the FORCE conference--Dr. F has performed more than 3500 breast reconstructions, 120 of which were PBMs for genetic mutation carriers like me. (When I think of this I have to laugh as I remember, just three months ago, how little I understood about the wild world of breast reconstruction and how afraid I was to be only the second person on the planet -- after my brave, pioneering cousin, who is recovering from her PBM as I type -- to have this kind of surgery. Oh, if I had only known.) But perhaps the most compelling reason to go with Dr. F comes not from his technique or his admirable devotion to BRCA babes like myself; it comes from his patients. I've seen (and touched) more of his "artistry" and "handiwork" than any other doctor's. His patients seem to revere him; they whip off their shirts to show off their results the moment you mention you're considering him. In fact, I met one last week and I was feeling her up within minutes. You can't buy advertising like that.

And so, pending the outcome of my meeting with his surgical partner next week, I'll be signed up soon for surgery. I'm planning to wait until December for the big day (so I can enjoy -- and begin to say goodbye to -- my natural breasts this summer). But just you wait. One day, sometime soon, I hope to be one of those crazy, happy ladies who doff their tops to show-off their Dr. F-reconstructed breasts. Lord knows, I've taken my shirt off for a lot less.

Tuesday, May 19, 2009

Fresh-squeezed Florida melons

Wanna hear something hilarious? It's pretty embarrassing, really. Oh well, here goes. So I've always sort of bristled when anyone referred to BRCA as "the breast cancer gene," mostly because I thought it simplified the situation too much (ovarian cancer risk is elevated in mutation carriers, of course, but other cancers, such as prostate, pancreatic, and melanoma are also associated with it). Whenever "the breast cancer gene" came up in conversation, I'd say something like "Oh, well, you know, it's much more complicated than that. It's actually called BRCA and..." blah, blah, blah. You get the idea. It wasn't until this weekend that I put two and two together and figured out why people call it "the breast cancer gene": because that's what it stands for! (Head slap) I can't believe how slow I can be sometimes. What part of my brain did I destroy in my chemical youth that I can't figure out that the BR stands for breast and the CA stands for cancer? Someone, seriously, take away my MA. I don't deserve it.

That said, I've needed a few days to collect my thoughts about the FORCE conference. It was, as I expected it to be, amazing; I learned so much and met so many wonderful people. But it was also a lot harder, emotionally and physically, than I expected. There seemed to be a vertiginous moment in every session I attended when my breathing shallowed and the floor seemed to pull away from my feet and I thought, "My god, why me? Why is this happening to me? I can't deal with this." That feeling never really left me, and I seesawed in and out of moments of acute philosophical crisis all weekend. I had trouble turning my brain off at night, and I had horrible dreams, including one on Saturday from which I woke in a cold sweat only to hallucinate that a demonic Disney character (it looked like this guy) was eating my hand. Note to self: pack sleeping pills next year. Or better yet, Xanax for daytime and Valium for nighttime. You'lll be able to recognize me because I'll be the one who looks totally blissed out.

(And I'm definitely going back next year. My father, who attended with me and was one of only two men (at least that I could find) who were there as carriers and not supporters (and more on the disparity between men and women in the BRCA community at a later date), and I decided to make this an annual pilgrimage. I'm going to bring G next year, too, and hopefully we can convince my cousin and uncle to join us, as well. A post-genetic futures family reunion, if you will.)

But the conference was everything I'd hoped it would be in terms of community and sisterhood. Everyone wore Mardi Gras beads signifying their status (I wore a blue strand because I'm BRCA2 and a purple strand because I haven't yet had cancer). The beads were both festive and subversive; you get baubles on Bourbon Street when you oblige the request to show your tits, and here we are at a conference about tits. It was pretty brilliant reclamation of a sexist practice, if you ask me. The sessions -- ranging from a history of mastectomy (note to self: be thankful you are getting your boobs lopped off in the 21st century) to dealing with fertility to choosing what kind of reconstruction to pursue (there are about a dozen different ways to make fake boobs) -- were astonishingly informative. And the food was great! (Word on the street is that Sue Friedman, the FORCE founder, is a vegetarian, so I was pleasantly full of delicious veggie food all weekend!)

But the best, and also most surreal, aspect of the conference was the so-called "show and tell room." Imagine a nearly bordello-type setting: women lounging around on expensive furniture in various states of undress, looking at you expectantly. This alternate universe was where I found myself Friday and Saturday night. These volunteers, of course, weren't selling themselves; they had graciously agreed to reveal the results of their reconstructions and discuss their surgeries, recoveries, hopes, and regrets. I saw every kind of breast reconstruction imaginable: breasts made of stomach fat, breasts made of silicone, breasts without nipples, breasts with reconstructed nipples, breasts with real nipples, breasts with scars, breasts with imperceptible incisions, breasts that looked good, breasts that looked bad. I even saw a woman who had opted out of reconstruction entirely; her chest was as flat as a prepubescent boy's. I found this part of the conference the most difficult because there is no precedent for it; there is no social protocol for the experience of speaking with a topless women about surgery and then asking to feel the results. Nevertheless, my goal next year is to be among the women in that room talking about their surgeries and showing off their new tits. Their bravery and grace is something that, despite the hyperventilation and psychic shock it caused, I hope to aspire to.

Some other things I took away from the conference:

- It's time to get my head out of the sand when it comes to my ovaries. I need to start cancer screenings on my nether parts, and I need to prepare for their eventual removal. I'm "lucky" in the sense that, as a BRCA2+ carrier, I have less of an astronomical risk of developing ovarian cancer (it's about 25% as opposed to 40+% for my sisters with BRCA1+), but it's still ten times more than the average women walking down the street. I need to start thinking about when and how I'm going to use my ovaries (more on that in a second) and learn more about what it means to go into menopause at 40.

- Related to the ovary front, G and I need to do some serious thinking about our future babies and how we want to make them. In a session about the challenges unique to being a young previvor someone said that their BRCA diagnosis was most difficult to deal with when it came to issues of reproduction, and I'm beginning to realize I feel the same way. If we get pregnant the old fashioned way, there is a 50% chance our child will also be a BRCA carrier (and, for ethical reasons, we would not be able to learn our child's status until he or she turned 18, so what would that feel like to wonder for so long?). If we did it the new-fangled way, we could make use of IVF technology to screen-out BRCA positive embryos; this would guarantee that the mutation stops with me. Of course, as wonderful as that all sounds, it's also an extraordinarily fraught decision; if that technology had existed 30 years ago, I would not be here. Furthermore, is BRCA, in the grand scheme of everything that can go askew genetically, worth investing in expensive and morally dubious technologies to eliminate? I don't know the answer yet, but it's on my new post-conference "to-do" list of things to figure out. Stand by for more riveting discussion of my unborn children.

- On a more practical front, I need to purchase supplemental cancer insurance. I also need to read carefully my medical insurance policy to understand what is covered and what isn't; this may require propping my eye lids open with toothpicks because, geez, that insurance fine print really is the cure for insomnia. And I need to get life insurance.

- When it comes to surgery, the thing, I've discovered, that I'm most afraid of is being put under. I think I can deal with everything else. But never having been anesthesitized, I get a little panicky when I imagine this part of the process. Apparently, some women work with hypnotists to help create calming strategies. I'm going to need to get me some of them, for sure.

Overall, as I've said, this was an overwhelmingly positive experience. I recommend anyone out there considering attending to plan on it for next year. And make sure you come find me. I'll be that girl giving you a come-hither look in the show and tell room. ;)

Thursday, May 14, 2009


I’m high above the clouds somewhere over Georgia, on my way to Orlando for the FORCE conference. Before we took off, I heard some women a few rows behind me talking about boob MRIs; I know eavesdropping is impolite, but I was heartened to know there are others of my kind on this flight. And that’s what this weekend is about: coming together with people who TOTALLY GET IT. Who don’t look at you like you have a third nipple on your forehead when you talk about wanting to chop of your breasts. Who know what it feels like to be afraid of your own body. And who are so relieved that you understand, too.

It was in this spirit that I read Jessica Queller’s BRCA memoir, Pretty Is What Changes, this week. On the surface, Jessica and I don’t have much in common. She grew up in Manhattan, I grew up in the suburbs off 1-95 somewhere between New York and Washington. She is Jewish, I’m a goy. She has larger knockers, I have ample boobs. She lost her mother to ovarian cancer, my mother is alive and well. She is rich, I am po’. She is a Hollywood screenwriter, I’m a blogger with few readers. She is friends with Calista Flockhart, the most famous guy I know plays guitar with Hanson. She is single, I’m married. She desperately wants to have children, I’m still waiting for my maternal instinct to kick in. And most importantly, she has a different mutation than I do: she is BRCA1+ and I’m BRCA2+.

But despite all of these differences, I was rapt by Jessica’s story because, in the end, it’s mine, too. Despite everything else, Jessica and I are part of a sisterhood, who, due to circumstance, timing, and genetics, have an opportunity to evade our fates; we each got a missive from the future that said one day you will get cancer, and we both decided to cheat our destiny. Jessica differs from me in another major way: she was initially anti-PBM (that’s prophylactic bilateral mastectomy, for all my non-BRCA readers) whereas from the first I was sold on surgery. But we ended up in the same place. What’s remarkable about technology and medicine, and how fast both move, is that Jessica, who went under the knife less than three years ago, was advised to have her nipples removed; every doctor I’ve met with now considers nipple-sparing surgeries the standard procedure. Who know what doctors will be advising three years from my surgery date? Will I wish I had waited? No. To paraphrase a horrible person, you go into surgery with the technology available now, not the technology that you want.

Jessica’s book raised an interesting question that I hadn't spent much time considering: what if people don’t want to learn their genetic fate? With this in mind, the BRCA process then involves two rather controversial choices: deciding to get tested and then deciding what to do with the knowledge those tests produce. I never considered the first decision much of a decision at all: I got an email from my father (on which he copied my soon-to-be-husband) last summer saying that the BRCA mutation had been found in the family and that he would hound me (and would enlist G to pester me, too) until I took the test. But even if my father hadn’t presented it as such a non-choice, I would have definitely taken the test. Unlike Jessica, who was so unconcerned about learning her status that she put the test off for years and then, when she finally took it, waited two months to get the results, my anxiety levels skyrocketed the moment I read my father’s message about our cancer history; many people say their lives changed when they learned their status, but mine changed with that email.

At one point, Jessica described awareness of your BRCA status as a “burden of knowledge.” This nearly caused me to fling the book into the trash (the offensive phrase appears on page 12, so I would have missed a lot, including her eventual change of heart about this). I was enraged to think that anyone could consider this gift (the forewarning, not the mutation) as anything but providential. Knowing your BRCA status allows you to make informed choices about your future, a future that otherwise could be stolen from you by cancer. But there are many people out there, I realize, that find the concept of crystal ball-gazing unethical, irreligious, and irresponsible. And there are even more people out there who think elective prophylactic surgery is just as reprehensible. They are entitled to their opinion, just as I’m entitled to mine. But to me, BRCA isn’t a burden, nor is it a blessing. It’s an opportunity. Statistically, I may have a very rare condition, but I’m in the majority when it comes to my approach to risk management: 70% of BRCA carriers opt for surgery. When I think about that number, I feel less alone. And when I read Jessica’s story, I felt like I was reading my own thoughts.

We should be on the ground soon. Signing off from 30,000 feet.

Wednesday, May 13, 2009

The picture of health

Spoiler alert: I'm going to ruin the ending of this story right at the outset.

I don't have breast cancer.

And whaddya know? The second I found that out, guess whose right ta-ta stopped hurting? Mine. It was all in my head. Now today, even though my boobs are sore (chalk that up to a combination of pilates, bikram yoga, and never ending consultations with surgeons and their fellows and residents and med school students and strangers off the street who apply their cold, clammy hands to my delicate bosom and stick fingers in my arm pippies, looking for inflamed lymph nodes), I know they aren't going to kill me immediately. (Wiping sweat from brow.)


I still had a scare.

As ordered by my breast surgeon, I had an MRI last Tuesday. It was a comical, loud process. For those of you who have never had the pleasure of being placed on a conveyor belt and inserted into a large machine around which magnets noisily rotate to create images of your insides, let me describe it thusly: the MRI machine is frighteningly Jetson-esque. It's like Epcot Center (the world of tomorrow as imagined by theme park designers yesterday). It's like the future Bill and Ted visit at the end of their eponymous excellent adventure, where everyone is wearing quasi-futuristic clothes and sunglasses. Apparently at the vanguard of medical technology, the MRI instead seems laughably outdated. It does, however, make noises that vaguely resemble the drum and bass beats of the late 90s. With its squeaking, whistling, and pounding, the MRI approximates the swampy, jungle rhythms of trance. So as least you can dance to it. Oh wait, but you can't. Because you can't move. For 45 minutes.

Aside from the fact that my shoulders fell asleep (they were immobilized in a Superman-like stretch while my lady parts hung down into little boob buckets), the MRI was a painless process that went by much quicker than I anticipated (is it possible that I dozed off?). But the next morning, home sick in bed (with symptoms unrelated to bosoms), I got the real kick in the nipple: the MRI had found something suspicious. A radiologist, who introduced herself as Holly, left me a voicemail. (This made me think maybe it wasn't all bad news, because real doctors don't introduce themselves as Holly, right? Maybe she was like a b-team doctor, a temp; she got the unimportant cases, the cases that didn't need to be dealt with by a Dr. So-and-so but could simply be taken care of by a Holly.) When I got her on the horn, Holly said, rather vaguely, the scan indicated some enhancement in the parenchyma of my left breast. (Which was my second clue that this story might have a happy ending. Because we all know my left breast is the good breast, the A-student, the church choir member. My right boob cuts class and smokes cigarettes behind the gym.) Nevertheless, it was miss-goody-two-shoes that looked suspect, so Holly recommended I schedule a follow-up ultrasound and another mammogram.

I wasn't completely paralyzed with fear (I had been warned that because MRIs are particularly sensitive, they often give false positives) until I got into my gown at the women's hospital and sat (more like fidgeted, paced the floor, tapped the windows in an annoying way, opened and closed my book, read and reread the same sentence) in the waiting room with other anxious women awaiting boob judgment. Everyone looked miserable. And I was terrified.

The woman who did my mammogram assured me that my films looked fine, that MRIs are a pandora's box. She told me to go buy something expensive and unnecessary to celebrate my clean bill of health. I didn't believe her, of course, but her optimism propelled me across the hall and onto the examining table where she lacquered up my left breast with gel and pushed a cold wand across my skin. There was a monitor just above my head so I could watch the strange gray contours of my insides undulate across the screen. "See, I told ya. Nothing," she said. To me, my breast looked mostly like television static, or maybe fuzzy stratified rock. What would something bad look like? How could you tell? Several doctors entered the room, one of whom was the illustrious Holly, who turned out to be a real doctor after all (she was wearing a white lab coat and everything), and they all took turns with the gel and the wand and eventually, they all agreed: there was nothing there. I left with a clean bill of boob health. But not after almost having a nervous breakdown after getting word of the abnormal MRI.

I also left the hospital with something more important: the knowledge that surveillance, and the attendant anxieties, is not going to work for me. I get too stressed, too worried; I fall down the worm-hole into the fantasy land of magical thinking. And I can't go there every six months. If I do, I know that one day, the MRI won't yield a false positive; it'll be the real thing. And that's not something I can sit around and wait patiently for.

So, to my healthy breasts: love ya guys, glad we're not at war yet, but yer still coming off.

Sunday, May 10, 2009

Thoughts on Mother's Day

In the BRCA community, Mother's Day isn't a very happy occasion. Many of the women of the BRCA sisterhood (and men, let's not forget them) have lost their mothers, grandmothers, sisters, and aunts to breast and ovarian cancer. They've watched them suffer and succumb. And they've inherited the gene that caused their mothers and grandmothers and aunts and sisters to get sick. And they fear a similar fate.

I'm in a little bit of a different position. My mother, at 61, is alive and well. Aside from a few scares (lumps and bumps whose pathology has come back benign), she has healthy breasts. But, of course, she is BRCA negative. I didn't get the gene from her; I got it from my father. My paternal grandmother, my father's mother, had breast cancer twice and survived it both times only to succumb to a stroke. But I didn't inherit BRCA from her, either. I inherited it from my paternal grandfather, my dad's dad. (And for those keeping score, my grandmother's cancer could have indicated a BRCA mutation, too, given that her family hails from the same region of the world as her husband's, but my father and his brother, my uncle, who would have inherited it -- if indeed there was anything to inherit -- tested negative for any other abnormalities.) My father, at 62, is cancer-free. My uncle, at 59, is too. My grandfather, who lived to be 87, had both prostate and colorectal cancer but didn't die from either. All the lady cancers, all the breast and ovarian disease, is on a part of the family tree who branches grow far away from mine.

Aside from my grandparents, my aunt, uncle, and cousins, and my immediate family, I didn't know my grandfather's siblings and their offspring very well, even though most of them lived nearby. (My grandfather had six sisters and two brothers, all but one of whom died from from cancer. Their children, my second aunts and uncles, all have had cancer. Now my second cousins, some of whom are close to my age, are getting sick.) We saw the extended family once a year for Thanksgiving dinner. In the rented basement of a Ukranian Orthodox church, three and sometimes four generations of family would convene, year after year, for a buffet style feast that began at 2 p.m. sharp. As a kid, it seemed to me there were hundreds of people there, all of whom knew me but whose names I could never remember learning (it's a perennial source of embarrassment that even now I know so few -- at my grandfather's funeral last summer I had to keep asking my father who it was that was hugging me -- and have learned many of their names only now that I study the family cancer history and see their dates of death and the ailments they succumbed to). Every November, each family branch -- the descendants of the nine brothers and sisters -- assembled around folding tables festooned with cheap plastic tablecloths, sat loudly in creaky metal collapsing chairs, and ate till overfull, drank till overserved, and laughed until overheated. Directly behind ours was a table whose numbers seemed to dwindle every year; the cancers that took them, often very young, were caused by the BRCA gene we wouldn't discover we carried for another decade. We still gather in that church basement, but over the years, as kids grew older and the elders passed on, the hall -- which once pulsed with such life and energy -- is nearly empty; more people are missing than are present. And BRCA, and its attendant cancers, claimed many of the departed.

All of this is to say that, for me, BRCA and what it can engender is actually rather abstract. Aside from the people at the next table over who didn't come back one year, I never saw anyone close to me die from cancer. My parents are healthy. My first cousins are too. My grandparents had cancer but they survived. So why am I so afraid I'll get sick? So afraid I'm willing to cut of my breasts before they kill me? Because I don't know what cancer looks like. I don't know how cancer feels. I don't know how cancer spares or how cancer kills. In its abstraction, cancer wields more power over me than if it had visited me where I lived. I have to make decisions based on emotions and intuition, not history and observation. And I fear it so much, I'm willing to do just about anything to prevent it from getting me, even if that means choosing a mastectomy.

To all the mothers -- past, present, and future -- out there, happy Mother's Day. Especially you, Mom. Love ya.

Friday, May 8, 2009

What we talk about when we talk about authorial intent

Recently, I've been thinking a lot about writing--its purpose, its impact, its permanence/impermanence (the last quality especially troubling given the ephemeral nature of blogging). I'm in the middle of a fantastic novel by Chris Bachelder, a contemporary writer whose work I'm just nuts about (his 2002 Bear V. Shark is painfully funny and prescient). Though perhaps I should reserve comment until I've read it all (again, the perils of the internet! ah! I have a thought! I can write and publish it instantly!), but given the structure of his narrative (really more of a pop-cultural-critique than a traditional plot), I feel I can hijack his work for my purposes here. The novel in question, U.S.!, is set in a world where the Socialist muckraker and prolific novelist (and fan of exclamation points!) Upton Sinclair is constantly resurrected and inevitably assassinated by folks afeared of his politics (would that Bachelder had written this in the post-Joe-the-Plumber era! The result of reading it now, of course, is that I picture all of Sinclair's assassins to be bald-headed and brain-deprived). This isn't a zombie novel; it's a trenchant critique of the resilience of ideas both unpopular and popular, the tension between adherents on either side of a debate, the meaning of politics in an increasing apolitical age. It's also a comment on the purpose of writing (and bear with me, because this is where it all relates, I promise). Reanimated Sinclair, in Bachelder's hands, continues to write treacly and formulaic screeds (with hilarious imagined titles like The Devil's Ears! -- about genetically modified corn, natch) but his novels fail to incite revolution. In an assessment of Sinclair's Pharmaceutical!, the reviewer comments: "Sinclair has never understood that art and polemic do not mix, that great and lasting art has no authorial agenda." And that struck me as completely true. Which off course made me think of my little writing project here. (Narcissism, it seems, is not suppressed by BRCA. It's amazing how completely unrelated things can now be linked linearly back to my breasts. My world is like a big game of six degrees of Steph's boobs.)

Why write? Well, on a practical level, I want to document. I want to help others. I want to inform. I want to promote awareness. I want to effect change. But on a more selfish level, I want to be remembered. I keep coming back to a line from the late genius David Foster Wallace's commencement speech at Kenyon College in May 2005 (now available, in the inevitable onslaught of postmortem cash grabbing following his September 2008 suicide, which left me wracked with grief for a week, in hardback). He said, "Think about it: there is no experience you have had that you are not the absolute center of." We are hard-wired (his line, hope you don't mind, DFW) to see the external world as a film projected on our personal screen; we experience life by processing how all that out there affects me in here. He continues, "Everything in my own immediate experience supports my deep belief that I am the absolute center of the universe; the realest, most vivid and important person in existence. We rarely think about this sort of natural, basic self-centeredness because it's so socially repulsive. But it's pretty much the same for all of us. It is our default setting, hard-wired into our boards at birth." I digress here as a bit of an absolution: DFW has cleared me of the charges of being so full of myself.

And really, who could be more full of themselves than writers? Especially writers who write about themselves? (I hesitate to include myself here, only because to call myself a writer is a little bit like calling a Tiger Woods fan a golfer. I'm a spectator, a wannabe, an aspirant.) I've attempted to write fiction before; I even got a graduate degree in it. But I'm not comfortable writing fiction. Perhaps it's the trained journalist in me, but I can't write about anything I don't feel reasonably well-acquainted with. Liberating though it may occasionally be, fiction involves making shit up. And that makes me squirm a little. I'd really prefer to do a little research, experience what it's like, before I write, say, a first-person narrative from the perspective of a seven-year-old boy. But oops. The laws of physics prevent that from being possible. I've never been a seven-year-old boy and never can be. So I can't present my story narrated by him with much confidence. What do I know well, better than anyone else? What it's like to be me. And that, truth be told, is a subject I'm more than comfortable writing about. At my core, I'm a non-fiction writer. But before I was hurled into this pre-cancer world of tests and surgeries and decisions, I was a writer with no subject. Now I've got one. And, conveniently, it's a story that stars my favorite character: me.

It's teeth-grittingly painful to admit, but when I found out about my BRCA status (well, fantasies swirled before I even had been tested) one of my first thoughts was: I'm going to write a book about this. Wait. That's not entirely true. My first thought was I'm going to write a popular book about this. Almost there. Deep breath. My first thought was I'm going to be famous because of this. There. I said it. Feel free to sneer. I would sneer at me. But how else was I to process the news if I couldn't find some possible positive outcome from it? So I imagined myself on Oprah's couch (which is patently absurd, considering I work in the book publishing industry and know how impossible it is to get on Oprah's couch), I imagine my book cover, I imagine the headlines ("Tragedy befalls moderately talented, reasonably well-liked not-so-young-anymore woman with formerly great tits. She fought back with this book."). And so I started writing this.

BRCA gave me a subject, BRCA is my muse. But there is such a heavy, pastel-pink cloud that hangs over cancer memoirs. Even the term makes me shudder a little (although mine would more appropriately be called a "pre-cancer memoir). It evokes charity-walks, ribbons, Oprah. And I'm not that kind of gal. I hate pink. I'm not about bite-sized self-help strategies parceled out by a television billionaire. I'm much too cynical to buy in to any of that. Yet with this blog, I'm trying to carve out my own corner in the crowded cancer-memoir market; I've decorated it with tones more eggplant than pink, sprinkled it with profanities rather than aphorisms, encouraged laughter rather than tears. But can it work? I'm not sure yet. This blog, like my health and my body, is very much a construction project; blueprints might scrapped, plans may change. I know I have a challenge ahead of me. Can I, as Bachelder says, create art despite its very obvious agenda? (That agenda being to promote awareness of genetic testing and mutations -- not, though the line may be perilously blurry, to talk only about the world as a film in which I am the star.) It remains to be seen. But at least I can declare my intention to try. Even if I fail.javascript:void(0)

Tuesday, May 5, 2009

Meet my evil twin

Sorry about the bummer of a post yesterday. I hate to put that kind of negativity out there, especially when there are so many people who have it so much worse that me. My positivity was kidnapped by my evil doppelganger (which may happen again from time to time). Here, I've written a play to illustrate.


Doctor's office.

Doctor: So, as you can see, we have many options for breast reconstruction.

Steph (thoughtfully, fiddling with chin as if stroking a goatee): Ah yes, very interesting.

Doctor: We have a range of implant options, including tissue expanders that are filled gradually to near-permanent implants in silicone and saline.

Steph (nodding her head): Fascinating. And the incision site?

Doctor: Ah, yes, well, there are several options there, too...

Offstage, loud crashing sound. Enter ANTI-STEPH. She is dressed identically to STEPH, but her clothes are torn and dirty. Her hair is a nest of frizz, syrupy Popsicle sticks, tree branches, and live animals. Her eye makeup is smeared across her face. She gnashes her teeth. Her eyes are wild.

Anti-Steph (growling): Raaaaaaar!

Doctor (shocked): Can I help you?

STEPH sits quietly with her hands in her lap.

Anti-Steph: Several options, huh? (Overturning examining table) How about none of the above, mother fucker!

ANTI-STEPH shreds the Shape magazine she has brought in from the waiting room and stuffs the glossy pages in her mouth. She chews loudly and spits the wet, masticated clump at the doctor.

Doctor (to STEPH): Do you know her?

Steph (looking apprehensively at ANTI-STEPH, who is now doing jumping jacks and singing Twisted Sister's "We're Not Gonna Take It"): (inaudible mumbling)


And scene. I realize now what I'm really mourning isn't my breasts but my option to do nothing. Contrary to popular opinion (many friends and readers have remarked about how proactive I'm being about my BRCA diagnosis), I'm a terribly lazy person. Just ask my husband. I'm a nap champ. I'm a classic why-do-now-what-can-be-put-off-till-the-last-minute-oh-hey-is-that-an-America's-Next-Top-Model-Marathon-on-TV-oh-sweet-it-is-I'm-not-leaving-this-couch-today kind of gal. I make plans and don't do them. For instance, this Sunday, I intended to go to a 5 p.m. yoga class. And guess what? I didn't! I took an nap instead. And guess what happened? Nothing! Not going to yoga didn't make a lick of difference in my life. But when it comes to my boobs, I can't nap through this one. I have to do something. And that disrupts my world order.

Off in a few hours to an MRI! Woo hoo! Go proactivity! (Offstage, Anti-Steph growls.)

Sunday, May 3, 2009

In which the princess does not get her way

I've had a rough go of it lately. This past week has been, by far, the most difficult I've endured. So difficult, in fact, that I've found it very hard to write about. Even journaling about my anxiety couldn't temper my fear and bring me understanding and peace. I have composed and erased this post a half a dozen times, and it never seems to come out quite right. But that's symbolic of what I've discovered recently: in my new world, things aren't ever going to be quite the way I wish they could be.

A lot of realities converged on me this week. It started out well: on Sunday, I attended a local support group populated by brave, diverse women of all shapes, sizes, and ages, all of whom, like me, are at high-risk for cancer, either because they, too, are genetic mutation carriers or because they have a strong family history (it should be noted that strong family history does not always indicate a mutation). Many of the women had already gone through surgery -- some had removed their breasts, some their ovaries, some both. There was even a show-and-tell portion of the evening when brave women doffed their shirts and bras and submitted to fondling and inspection by us pre-ops (if you had told me a month ago I would have found myself feeling up strangers on Sunday nights in the suburbs, I'd have thought you were lying, but alas, that's exactly what I found myself doing last week). The reconstructions looked good -- think perky porn star good. Pert grapefruit halves good. Gravity defying orbs good. In fact, there are lots of women out there who are willing to pay to have their breasts look like that. But, unfortunately, they aren't real boobs good. They feel funny, like sacks of gelatin. The loose skin can ripple around the implant. And there are the scars -- angry reminders of what lies beneath. I saw incisions under the boob; I saw incisions across the boob; I even saw incisions straight down the middle of the boob (and nippleless boobs, too, though so-called "nipple-sparing" procedures are more common today). Overall, I saw really wonderful examples of advances in surgical and reconstruction technology; but, in the end, no matter how well the final result approximated natural breasts, they weren't. And I think that's what set me off.

I realized that being BRCA2+ means, essentially, that, when it comes to pretty important parts of my body, I can no longer have my way. If I had my way, I'd keep my boobs (and my ovaries, but that's not something I have the mental capacity to process yet); as I've mentioned, I'm quite fond of my ta-tas, they have many admirers, and they are currently scarless, gelatin-sackless, and natural. They fill out a swimsuit well. They don't get in my way when I do yoga. And, perhaps most critically, they have the potential, should the occasion arise, to provide milk for my child. Being BRCA2+ (and pursuing surgery, which I'm more and more convinced I need to do every day, even if I'm less and less thrilled by the choice) means that I'll look different, my breasts will feel alien, and most devastatingly, I will never be able to breastfeed. And that sucks. At so many points this week, as I was being pummeled by all of these new, inarguable realities, I felt like stomping my feet and balling up my fists and throwing a fit because that's what little princesses do when they aren't getting their way. But I can't scream and cry and hold my breath until my face turns blue with this one. I can't stick out my bottom lip and act all cute until I get what I want. I'm stuck. It's a choice between shit and shit, and, unfortunately, I realized this week that I'm just shit out of luck. I got angry and scared, and at points, I felt like I was going to faint from the stress.

Also this week, I started to worry that I'm already sick. Well, I shouldn't say *started* since I tend to be a bit of a hypochondriac (I'm always pretty convinced that every little creak and ache portends a grizzly demise from some fast-acting disease); in fact, as I've noted, my right breast started hurting almost immediately after my father told me about the mutation. But for some reason -- which I think I've figured out, because spending my free time psychoanalyzing myself is, next to watching marathons of America's Next Top Model reruns, the best way to kill a few hours -- I became convinced this week that the ache in my breast is real, that I'm already ill, and that I'm already too late. Whether or not I am is to be determined (to find out what's doing in my bosom I'm scheduled for an MRI Tuesday afternoon, which I plan to recount in all its claustrophobic glory here later this week), but a side effect of all of this is that I am pretty much, until I learn how to deal or just go batshit crazy, in a constant state of near-panic. I was scared about my genetic testing results. Now I'm anxious about the findings of the MRI. Next I'll be terrified of surgery. Then I'll be worried about my ovaries. It's a constant cycle of transferring -- once I overcome and accept something there's always something new to fear. BRCA2+, and the anxiety that comes along with it, is the gift that keeps on giving. And it's a gift I wish I could return.

So, as I said, it's been a crappy week. But it's to be expected. I can't be funny-hey-everything's-OK girl all the time. This is a story as much about my emotional as it is my physical journey, and I'm documenting it all, the good, the bad, and the downright shitty.