On the Origin and Nature of Fear

Yesterday, I began reading an advance copy of a new BRCA book that's due out this fall. It's called Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decision and it'll be available in October. But because I'm special (and because of this here blog I gots), I received an ARC (industry shorthand for advanced reading copy, or as we call them at the publshing house where I work, galleys) from Random House and dove right in.

Previvors is part-guidebook, part personal stories. It follows five women who navigate the repercussions of being at high-risk for breast cancer. Three of the five women are BRCA positive; two are not. All five chose the same path to reducing their risk: prophylactic surgery (although several spend years, and in one case, even decades, undergoing surveillance). Their stories supplement the very practical advice and scientifically sound research laid out by the book's author, Dina Roth Port (whom I had the pleasure of meeting at last year's FORCE conference and who is, according to LinkedIn, an alumna of the very same journalism school I attended. Go cats!). So far, I'm enjoying it very much.

(Pause to say I will have a full review of this book when I've finished reading it, and I owe several authors and publishers reviews on other BRCA books I have sitting on my nightstand, which I promise I have not forgotten.)

I'm only about 100 pages in, but something on page 7 gave me pause, and I wanted to explore the issue further here. Chapter two of Previvors is called "Living in Fear," and it contains a number of thought-provoking statements. For instance, Port writes "All diseases are scary, but for some reason breast cancer packs a particular punch. In fact, one survey showed that women fear this illness more than any other, even though cardiovascular disease claims more than ten times as many women's lives each year." This is a statement which with I can completely agree, and I'm sure many of you feel the same way. I spend nary a second thinking about my heart (which I presume, due to my assiduous diet and stringent exercise regimen, to be in tip-top shape), but even before I knew I was high-risk, I knew enough to be scared of breast cancer. Which is what makes the next statement so thought provoking. Roth writes, "Fear of breast cancer don't just appear out of thin air. It stems from a source; there's a definitive point in time when it all begins. For some, that might be something as innocuous as reading a magazine story about a women who battled the disease. For others, it's often watching a loved one actually suffer to the end with it." I read that and thought, huh, where did my fear come from? Where did this fear -- an emotion so strong I decided to preemptively remove the very body parts that may at some point try to harm me -- stem from? The truth is, I'm not exactly sure.

As I've written many times, I did not grow up around breast cancer. It did not affect my life or my perspective of my future health or mortality. My grandmother had it when I was a child, but it was dealt with as a non-event, and she survived for two decades after beating it. (She was not a BRCA carrier; I inherited my mutation from her husband, my grandfather.) I did not learn to fear breast cancer from watching my grandmother. And since the BRCA mutation was passed to me from two generations of men, breast cancer did not manifest itself in anyone else. Therefore, it wasn't by watching anyone suffer that I learned to fear breast cancer. So how did I learn fear?

It could be that I learned to fear breast cancer when, at age 27, I found a lump in my right breast. But I was assured by doctors it was nothing to be concerned about and, indeed, it eventually disappeared as suddenly and mysterious as it had appeared. (I was also told I was too young to have breast cancer and that I should begin routine mammograms at age 40 and simply put the whole event out of my mind. Funny how things can take such a sharp U-turn so quickly...)

In truth, I think I learned to fear breast cancer the minute I learned I was likely to get it. In other words, I wasn't scared of breast cancer until I understood there was a genetic mutation in my bloodline that conferred an astronomical risk of developing the disease. The moment breast cancer ceased being abstract and became concrete, that's when I felt that tightness in my chest, that acidic discomfort in my stomach, that cold sweat on my palms and feet. But to be specific, the fear really kicked into high gear when I got my results of my BRCAnalysis; I have never been more scared of anything in my life.

For some people, learning their risk (which will likely cause fear of the unknown and uncontrollable) when they have lived a life relatively removed from that anxiety is not worth it. So why did I chose to learn my risk and subject myself to a life clouded -- at least temporarily -- by fear and anxiety? I guess the short answer is that in this case, what I didn't know might have hurt me. I could be living a completely different life right now if I hadn't taken that genetic test last April. I'd still have my natural breasts, I'd probably be jogging along the lakefront on this humid evening rather than typing a blog entry, and breast cancer would still just be something that happens to someone else. But that alterna-Steph would still be BRCA positive; the difference is, she wouldn't know. Despite the fear engendered by learning my risk, I'd much rather be safe than sorry.

Fear has been very much on my mind today. I've been exchanging emails with a woman who recently tested positive for the BRCA2 mutation and she's paralyzed by fear. She's scared of surgery and scared of cancer. And it's funny because the advice I gave her is very much coming from someone who is still afraid (or at least aware of the fearfulness that it raises in me) of breast cancer. I told her that cancer is scary, that chemo is scary, that fear of reoccurrance or metastasis is scary. But surgery is not. And yet, long time readers know how scared I was of surgery, how convinced I was I would suffer some unseen complication under anesthesia and never wake up. My fear was specific; I was never scared of pain or what my body would look like after. I was just scared of doing something to ostensibly prolong my life and instead accidentally end it. But that fear was very real to me, just as the fears this woman is experiencing. In my case, my fear of an unknown and unknowable diseases motivated me to make a decision; in other cases, fear can debilitating.

Fear, I think, is inescapable. Whether you've witnessed the ravaging effects of cancer claim a loved one or if you've only experienced it from afar, breast cancer is a terrifying disease. It touches the parts of us that make us women, that make us nurturers, that make us attractive; it's indelibly linked to many aspects of femininity and self-worth. Breast cancer is scary, and no matter how its shadow has darkened your world, no matter the event that triggers it, what we as BRCA mutation carriers must face is scary. Inaction is scary, but action is equally so. Yet we manage our risk in such a way to make fear is manageable. For me, that meant having surgery, despite my fears of anesthesia.

This is a community bonded by fear. And yet, as the women in Roth's book show, we are also a community with a rare choice to escape that fear. I told the woman I exchanged emails with today (and have written here before) that when I had my mastectomy, sure I lost my breasts, but I also had all that fear and anxiety removed too. It's funny; I may not be able to pinpoint the genesis of my fear, but I sure as hell remember when I stopped being scared. That was the moment I woke up from surgery and realized I'd done something irreversible to reduce my risk. And I haven't had a moment of fear since.

Making Progress, Setting Goals

It's hard to believe it's June already. Time truly is elastic. Pretty soon, I'll be celebrating six months since surgery. That time flew by in a blink; on the other hand, the six months prior to surgery were a slow slog through hell.

Despite the length of time that's passed, I'm still healing. Or, perhaps I should say, I'm still making progress. And most of that has to do with learning to trust my body again and being astonished by what it's capable of. For months after surgery, I felt infirmed. I was limited physically. Although I was healthy (and indeed had chosen to have preventative surgery to remain that way), I was -- temporarily -- weakened and compromised by the assault on my body. But as time passed, I slowly began to reclaim my corporal capacities. It started when I got back on the treadmill at the gym. Then, I tried rowing. And gradually, I realized that I was healing and that I was capable of a great deal more than I thought.

But I still was aware for a long time I wasn't yet 100%. Even as recently as six weeks ago, I was more aware of my (supposed) limitations than my (untapped) abilities. When I boarded that plane to Aruba in April, I panicked when it came time to lift my bag into the overhead bin. It was heavy (who knew how much sundresses and sandals could weigh?) and I didn't think I'd have the upper body strength to do it. Luckily, a kind gentleman jumped out of his seat and helped me with my bag (and even retrieved it when we landed) without me having to ask. But last week, on a flight to DC (It was my fourth pre-7 a.m. flight in less than a month. Note to self: stop torturing yourself. You aren't a morning person. And watching the sunrise at O'Hare is no fun.) I didn't even think twice when I went to stow my baggage. I hefted the suitcase up and into the overhead and didn't even think about it until I sat down in my seat (and mercifully had the ENTIRE row to myself) and realized what I had just done. I was back.

I've been feeling pretty powerful lately. A lot of it has to do with the strength I've discovered rowing. Let me tell you: it might look easy, but it ain't. Rowing on the ergometers is challenging in a number of ways: there's the technique, the posture, the monotony. But because we work out as a team, it's impossible to stop while your teammates continue to row; even when you're dog tired and can't imagine another jump, you look to your right and left and see women who've beaten cancer and you know you have to push ahead. If they can do it, so can I. And I have.

I've also been running a lot lately. In fact, I'm probably more dedicated to it than I've ever been before. I've always been athletic, but despite the fact I'm super tall with legs that go on forever, I've never quite figured out how to use them to my best advantage. I was exceedingly mediocre at just about every sport I've ever played, but what I lacked in talent I made up for in sheer will and dedication. I graduated with seven varsity letters and even made the all-state basketball team my senior year (that state being the state of Delaware, so don't get too impressed). But as an adult, I've struggled to reconcile my lack of natural athleticism with my desire to be active, healthy, and fit. I dabble in yoga, love pilates (and if I were a real housewife of New Jersey or wherever, I'd pay big money to have a studio installed in my mansion of conspicuous consumption and hire a live-in trainer), enjoy a bike ride along the lakefront, but I've become, despite my lack of natural grace, a runner (or a person who runs) first and foremost. When I get pedicures, the women always say, "You are a runner." (It's not my lean calves that give me away; it's my gnarled feet.)

And yet, I'm an extremely moody runner (I've written before about my love/hate relationship with the sport here). I abandon the pursuit for weeks -- months -- at a time, go soft, and then start all over again. But not so much recently. There's something I'm getting from running right now that I never have before: a sense of power, accomplishment, potential. Which leads me to my big announcement (well, the big news is that I'm making public a personal challenge, so I have that much more reason to complete: accountability to you all). I've decided to set an ambitious goal for June: I want to run (or walk briskly -- we can't all be superwomen everyday) 100 miles this month. Typing that number makes it seem absurdly small, and I realize dedicated athletes can pound that out in a week. But to me, it's a challenge. That means I've got to run about 25 miles a week, or 5 miles a day (with two days off). But I know I can do it. And I know I'm capable of it.

When I learned I carried the BRCA mutation last year, I felt betrayed by my body. But now that I've taken control of my health, I feel more powerful than ever. See you at the gym!

Thoughts on Privacy

I've been thinking a lot lately about privacy. And I know I'm not alone. Unless you've been living under a rock -- or just quietly going about your life offline -- you've undoubtedly read about the dust-up created by our robot overlords, er, ahem, I mean Facebook, and their new opt-out-only privacy settings and the cash they're printing selling our personal data -- the things we like and don't like -- to companies who in turn target us with personalized advertisements. The problem with Facebook, so far as I see it, is that we all flocked to it -- after we abandoned the rusting amusement parks of Friendster and MySpace -- because we thought it was a place to share photos and catch up with old friends; we gave freely of our personal data -- joined groups, supported causes, etc -- because we were told our profiles would be protected. But the reality is much more complicated; now our profiles are being commodified and, most troublingly for me, much of our data is now Google-able.

I Googled myself today, and I discovered, much to my horror, a wall post I'd written on a group I belong to on Facebook, which contained a link to this blog, was the second result that appeared when I typed in my name. Now, I'm not so vain as to think that every day, dozens of ex-boyfriends, frenemies, potential employers, and secret admirers, etc are typing my very-hard-to-spell last name into Google and reading through the results. But I'm also not naive enough to think that people don't Google me, especially potential students, editors for whom I freelance, and, yes, potential future employers. And though I am proud of this blog and proud of the decision I made to take control of my health, I do not want the fact I had a double mastectomy and am a breast cancer gene carrier to be the second thing you see when you Google me. Yes, being a BRCA mutant and a card carrying member of the double mastectomy ladies luncheon society is part of who I am; but it's not what I want to define me.

When I saw the search results, I broke out in a cold sweat. I felt outted. I felt naked. And the worst part -- I feel powerless. There's no one to write to to say, "Kind sir, please delete this search result. I'd rather people not know about my boobs." I'm not sure when this happened. I googled myself a few weeks ago and nothing of the sort showed up. So I changed my settings, left a few groups, and well... I can't do much else.

Which leads me to larger, icky, existential questions about how to live in an era of oversharing, still maintain this blog (because I truly believe if I can help just one woman feel less alone and less scared, I've done something right), and preserve a modicum of my privacy. I realize it's a slippery slope; if I was truly interested in privacy, I would never have penned this blog or dreamed of telling my story more publicly. But I did those things on my terms; Facebook outted me on theirs. I'm feeling exposed and vulnerable and, regrettably, let down.

The truth is, the public at large is misinformed about BRCA mutants. As I wrote about in my last post, people can be unkind, judgmental, and, frankly, totally wackadoo in their perceptions and prescriptions. Because I'm not a breast cancer survivor, for whatever reason, my choice to prevent cancer by surgically removing the parts of my body most likely to try to kill me is deemed controversial by some, over-dramatic by others, and, at the very least, questionable by many. And I hate that this information about me -- this choice I made, this journey I've traveled, this genetic imperfection I have -- is now accessible to people who may judge me because of it. I've always thought of this blog as a place to update my friends and family as well as a place to connect to complete strangers; I've never intended this to be a destination for acquaintances, people I know but not well enough to tell them about all of this. And that's who that Google result make me accessible to: the people I don't really care to share this with.

When I first started writing here, I found myself questioning whether writing about my heath -- something so private that there are laws protecting the information I've giving away here for the world to see -- would end up harming me -- in terms of discrimination and judgment. I'd forgotten about that concern in the last few months; after all, I was reaching so many people, and telling my story was therapeutic for me. This blog, this forum, was not harming me at all; it was helping me, as well as others. But now I worry about my privacy again and wonder when the balance tips between help and harm.

Revolt against the brain-dead commenters

I guess I'm a glutton for punishment. Every time a news story is published about BRCA, I read it thoughtfully, take a deep breath, and then dive into the comments section -- a sinister, murky land filled with ill-informed trolls and their crazy talk. It both breaks my heart and makes me incalculably angry that strangers can be 1) completely insensitive to each other and 2) so thoroughly mistaken about the prescriptives they aver with such surety. The internet is full of cancer denialism, and this is my -- albeit small and meek -- revolt against it. Below, I've copied comments that illustrate my point; then I explain why they are wrong.

Comment: "Cancer is the non stop growth of cells, since they are trapped in the body they just grow in a 'ball shape'. It is believe that its trigger by high levels of stress. or negative feelings towards other people. Energy cannot be destroyed it only transforms, and sometimes transforms into bad things like cancer."

My response: This gem was left in response to an article posted this week about a mother and son, both BRCA2+, who battled breast cancer simultaneously. Though I'm tempted to tear apart the logic, and ridicule the grammar, I'll try to play nice. But this comment illustrates a sentiment that is very prevalent among internet trolls, and that is: IF YOU GET CANCER, IT'S YOUR FAULT. < Pause to compose myself > This is vile and reprehensible BULLSHIT. How can anyone say such a thing, let alone think it? If you have cancer, it's because you are stressed or have negative feelings towards other people. And if only you didn't have stress (who doesn't?) and negative feelings toward other people (oh, like the negative feelings I have towards you, internet commenter?), you wouldn't be sick. Where do people like this get off blaming the victim? Do they have any idea how wrong and insensitive this sentiment is? I'm guessing this commenter wishes to suggest being less stressed and harboring fewer negative feelings will prevent cancer, but that is not only wrongheaded, it's also easily misconstrued as a value judgment on those who already have cancer. And it's despicable.

Comment: "There is too much emphasis put on the BRCA2 gene. My mother had breast cancer, I had breast cancer, and my daughter has breast cancer. We were tested and it is not genetic. Cancer is just a disease that is becoming prevelant in today's society. Anyone, anytime can get it and they don't really know what triggers it. We need to find a cure now!!!!!!!!!!!!!!!!" (comment from the same article as above)

My response: Easy with the exclamation points, hoss. Nothing says take my well thought-out and rational response seriously than sixteen exclamation points. Sarcasm aside, I agree with this commenter that we need to find a cure now. But again, I think there is a major logical flaw in this commenter's argument (if we could be so kind as to elevate it to that level of discourse): my cancer wasn't hereditary, so therefore hereditary cancers aren't important. The truth is, there isn't nearly enough emphasis put on the BRCA gene. More education and outreach -- both in the general population and among medical professionals -- is needed; there is so much ignorance out there about hereditary cancer (not the least of which is the sentiment expressed by dumbass number one up there that cancer is caused by stress, not gene mutations) and more, not less, emphasis needs to be put on it. Secondly, this commenter is wrong that her cancer wasn't genetic; it was. All cancers are genetic. She claims her cancer is not hereditary, and that may indeed be the case. But then again, there could be other genetic mutations not yet discovered that could explain why three generations fell ill to the same diseases. Since hereditary cancers only account for 5-10% of all cancers, it clear something else -- and I'm guessing it's triggered by our environment, what we eat, and how we live -- is at work here. But to discount hereditary cancers because yours isn't is myopic and selfish.

Comment: "That could be a generational curse. They don't have to stop having children in their family, they just have to pray to break the generational curse. With man things are impossible, but with God nothing is impossible. Didn't you see now that they are both cured. God did that." (from the same article)

My response: I'm going to restrain myself here (which is very hard to do) and try to be evenhanded (and not get into a religious debate). But there are a number of things in this comment, especially, that gets my blood boiling. 1) "Generational curse": what the fuck does that mean? And who put it there? 2) "Pray to break the generational curse": um, please show me the evidence that prayer has ever repaired broken genetic code or cured a disease. 3) "They are both cured": did I miss the memo about the discovery of the cure for cancer AGAIN? Man, I'm always the last to hear about this stuff. < end sarcasm > They aren't cured. They have survived. Their disease is in remission, not gone for good. THERE IS NO CURE FOR CANCER. Why do we forget this? 4) "God did that": no, he didn't. Chemo did that. Radiation did that. Surgery did that. Lynda, the mom, did that. Cedric, the son, did that. The doctors who treated them did that. Please give credit to the people who took the actions that lead to the results. I'm stick of strange forces being blamed for causing cancer and sick of strange forces being credited for curing it. No. They took the initiative, they took control. Recognize and respect.

Comment: "Hmm. Profound. My father and grandfather died of kidney cancer, one uncle from brain cancer and another from bone cancer. My grandmother and two great aunts died from alzheimers. My maternal grandfather and his father died of heart disease. Maybe I should have my kidneys, brain, heart and bones removed so I can be sure I will live a very long life. Young miss, look out when you cross the street."

My response: This insensitive dreck was left in response to the amazing Lizzie Stark's Daily Beast essay about her preventative double mastectomy. I almost have nothing to say, since the stupidity of this fecal morsel speaks for itself. But I will say this: The commenter comparing apples to oranges; both Lizzie and I can live happy, productive, and peaceful lives without our breasts, whereas none of us can live without kidneys, brains, heart, and bones (although I'm dubious this guy hasn't already has his brain removed). To compare them (while also conflating the statistical risk of hereditary breast cancer with whatever risk of hereditary heart disease, kidney failure, bone cancer, and Alzheimer) is illogical.

Comment: "This young woman chose to mutilate herself. That was her decision. I personally would never consider such a radical approach. That's me. I would like to think I'm not so afraid of the inevitable - death - that I would start chopping off body parts or quit leaving the house. That's me." (again in response to Lizzie)

My response: First of all, Lizzie did not mutilate herself. Second of all, she never said anything about fearing death (or being an agoraphobe... not sure where that came from). But that's not what bothers me about this comment, or others like it. It's that these people seem to be saying, "Suck it up and get cancer." It's like they are saying, "Sure, you have lots of options at your disposable to avoid it but you shouldn't avail yourself of any of those options." Why? "Because that's not what I would do." Well, I don't mean to speak for Lizzie, so I'll just speak for myself: I don't give a fuck what you would do. And furthermore, suggesting that we shouldn't prevent cancer (and just sit back and wait for it to come) is as deplorable as suggesting we caused our cancers.

< Deep breath > I think I need a drink. It's almost noon. That's cool right? (Oh, a little shout out to all my readers -- and commenters -- who leave thoughtful, conciliatory, and admirative comments: you guys rock. I'm so glad to have your support. Let's hope the trolls never infiltrate this blog!) < Raising a martini glass > To logic, empathy, and kindness.

Boobs in Paradise

I just got back from a trip to paradise (which explains why this blog has turned into a bit of an abandoned amusement park this month. Here's to cranking up the ol' carousel and calliope one more time). It was my first vacation since my surgery and, in many ways, it was a celebration of a return to normalcy, to health, to happiness. I left G at home this time and set sail with my dear friend N (whose loyalty and companionship I've extolled several times on this blog) for a girls getaway to Aruba. It was a trip designed to commemorate many of my new boobs' firsts: first time on a plane, first time out of the country, first time in a bikini, first time in the ocean. And it was a incredible success: we had restorative, sun-soaked, and booze-filled fun while picking apart (in the way only girls can) the minutiae of life and love. But there is nothing like wearing a bathing suit for a week to put you back in touch with your body. Here are some things I learned about my boobs on vacation:

1) They like to make surprise appearances
I was emailing with another recently reboobed BRCA babe this week (the incredible Lizzie Stark, whose piece in the Daily Beast last week, "Goodbye to My Breasts," engendered comments both clueless and congratulatory) who mentioned her new boobs seem smaller because, as she put it, "the shape of the implant gives me a lot of boob above the nipple." I have the exact opposite problem: my nips are positioned on the top third of implants so that they are always reverently pointing towards the sky. Still, after all these months, I am startled when I look down and see a nip seemingly near enough to poke me in the eye. Because of this, covering them in the bikini I wore, a sort of retro-bandeau halter, proved more difficult that I imagined. N was on constant nip patrol, ready to warn me when the shadow of my areola appeared above the horizon of my top. I gave up a few times, however, especially while snorkeling; I gave the rest of my diving group a free show on more than one occasion, I'm sure.

2) They won't pop while getting a massage
I got my first massage since surgery on the second day of vacation, and I was a little worried that my implants would get in the way/explode/cause my masseuse would run out of the seaside hut screaming in horror. I still have not returned to stomach sleeping yet, so the sensation of laying on my breasts like that on the massage table was odd at first, but I quickly forgot about it (most likely because I was being rubbed with oil and it felt oh so good). And my massuse didn't say a word about my breasts; I'm not even sure she noticed.

3) They don't behave any differently in the water than the old ones did
Much to my disappointment, they are not personal flotation devices. But much to my surprise, they don't feel much different than my old breasts. When G and I were in Costa Rica last summer, I remember floating in the warm Pacific and trying to imprint on my memory the sensation of what my body felt like at that moment, weightless, supported by the buoyant seawater. But what I discovered shortly after sprinting into the ocean about sixty minutes after touching down on the tarmac at Queen Beatrix International Airport is that, when you're floating, you feel nothing. It's like that weightlessness, that numbness that your feel through your entire body when you surrender to the waves, ensconces you. For a moment then, my boobs didn't feel different at all; they felt like the rest of my body, enveloped in warmth.

4) I'm not ready to go topless
Nudity is circumstantial. In the context of my BRCA life, I find myself taking my top off for just about anyone who asks, proudly showing off my new rack. But when it comes to just being nude, not as a woman who's had breast reconstruction but as just a woman, I have discovered I'm a little more shy. The beach where we sunned ourselves all week wasn't exactly topless, but the act tanning your ta-tas was not frowned upon. I fell asleep in the beach chair under the shade of the palapa one afternoon and woke to the sight of a woman laying not ten feet from me defiantly, proudly topless. Whoa, boobs, I though. Real ones. I haven't seen real boobs in ages. All the boobs I see are reconstructed, like mine. I thought about going topless all week, but I found I wasn't ready yet. You see, when I pop my top off for someone to see my new boobs, I'm reinforcing the idea that my breasts are abnormal, that they are something to be inspected and remarked upon, studied and analyzed. And I'm comfortable with that. They are still oddities to me, too, and because of that otherness, I feel comfortable treating them like specimens rather than parts of me. I don't feel normal yet, so the act of doing something natural, like lying topless on a beach, isn't something I can do yet. I was worried about my scars. I was worried about the stares from passing cabana boys. I was not ready for my breasts to just be my breasts. That's a work in progress. I'll get there eventually, and when I do, I'll return to that swath of white sand and say, "World, check these out." But I wasn't ready to that yet, and that's OK.

5) Everything I've been through is worth it if it means I get to go to beautiful places and live a long happy life
Nothing makes me happier than traveling. There is nothing like that first moment when you arrive at a new place and your eyes take in the scene, full of wonderment, knowing that you'll never see things again quite like you see them the first time. I want my life to be full of moments like that, where I go some place new and see new things and get so giddy inside I think I might cry. And that's, in a lot of ways, why I did what I did. Because I want to be healthy. Because I want to live a full life. And I want to see as much of this incredible world as I can. And I know that having significantly reduced my risk of developing breast cancer, I hope to have many years of health, travel, friendship, and awe. I feel so lucky, so incredibly lucky, to have chosen a life less burned by fear, and I plan to make the most of it.

Happy BRCAnniversary to me

It's usually hard to pinpoint precise moments when your life changes; change tends to happen gradually and is often recognized only after the fact. But on this day, exactly one year ago, my life changed completely. On this day, I learned I was BRCA2+.

But change is a slippery word. I didn't become BRCA2+ a year ago today; I simply became aware I was. I've been BRCA positive since I was born -- heck, even before, when I was just a pile of cells, including my father's copy of his imperfect thirteenth chromosome. But a year ago, I entered a doctor's consultation room a woman, so far as I knew, at average risk for breast cancer and left, about thirty minutes later, someone different, someone who could never unknow what she'd just learned.

For some women, the day they receive their positive BRCA results is just another day; it's just Thursday. They are able to shelve the information, table it for a later date. But my experience wasn't like that. Armed with statistics, numbers, and risk models, I sprang into action. I began planning -- and by planning, I mean accepting -- my mastectomy. From the day I learned I carried the mutation to the day I removed the tissues it was most likely to affect: 7 months, 9 days.

Looking back, after the year I've been through, I often think about that transformative moment. If I had to do it again, would I still do it? Should I have waited? Is ignorance bliss? There is never a good time to learn you carry the breast cancer gene, and it's information not every woman wants to know. But even though the information I learned a year ago today changed my life -- and my body -- I'm still glad I have it.

But in learning I carried the breast cancer gene, I became much more than a woman a high risk for breast cancer. For years I was a writer who never did any writing; a year ago I became a writer for real, not only with a subject but with a voice. And somewhere along the way, I acquired an audience; I now speak not only for (and to) myself but to the women I know read this, to the women who are finding themselves in the same position I found myself a year ago, to the women who might feel alone like I did. Becoming a previvor allowed me to fulfill another passion, and for that I'm grateful. For my audience, I'm humbled.

So much can change in a year. And for me, a lot has. I've got a new identity -- that of previvor, blogger, mastectomy graduate. But those changes have been overwhlemingly positive. I don't have the option of not having the mutation -- that would be fantasy -- so if I have to do this, if this is indeed my fate, I'm proud of how I've handled myself.

To those far along on their journeys or for those just beginning, we are members of a group not one of us would likely want to join, but we're bonded by our experience, our choices, and the tolls they exert on us. Life hasn't always been easy these last twelve months, but I also have a better appreciation for living. After all, I was given a choice to live life on my terms or my genes' terms, and I chose the path that would allow for the most health, the most joy, the most reward. And I have been rewarded: I'm happier than I've ever been and more certain than ever that we can create positive change. None of this would be possible without knowing what I learned a year ago today. Happy BRCAnniversary to me.

The OTHER Surveillance

Last week, I wrote a couple of posts about what it means to be a young women who has chosen to have a risk-reducing mastectomy and whether or not that makes me "pro-surgery." The conclusion, of course, is that, while I certainly feel that a PBM was the right choice for me, I support all women facing hereditary cancer, no matter how they chose to manage that risk.

But there are two sides to the BRCA coin.

Whereas I chose a preventative mastectomy to manage my breast cancer risk, I'm currently opting for ovarian surveillance. In other words, while it was relatively easy for me to say goodbye to boobs, I'm not yet ready to part with my other lady parts.

This is a factor of my age. At 31, I'm not done having kids yet. That's because at 31, I haven't even started having kids. And, looking at my calendar, unless I get an unexpected urge to reproduce, I'm giving myself a few more years of sleeping late, going out, and spending my disposable income on shoes and vacations and dinners out. In other words, I hope to be a DINK (dual-income, no kids) for a little while longer. But not forever. I think I want kids... (I've never been one of those girls who say, "All my life, all I ever wanted to be was a mom." Spending any time with a baby reminds me how grateful I am I don't have one). But I know, at least, I want the possibility of having them. So I'm going to need my ovaries some day. Just not today.

I plan to keep my ovaries at least until I turn 40. As a BRCA2 mutant, I'm "lucky" (lucky in quotes because ... pshaw ... no one should have to plan when they are going to pull out their ovaries) that I have a less astronomical risk of ovarian cancer (about 1 in 4 vs. 1 in 2 with my BRCA1 counterparts) and, therefore, a little more leeway with how long I can keep my ovaries. (When I was given my positive genetic test results, the doctor told me I should think about an oopherectomy at about 45. That seems to be pushing it a bit, but I'm glad I have the option to stall if I need to.)

To be honest, I'm TERRIFIED of removing my ovaries, far more than I was about removing my breasts. I know this is counter to what many women feel when they get their BRCA results -- for many, an ooph is a no-brainer, whereas the mastectomy is the toughie. (And studies support this. An oopherectomy increases survival rates in BRCA mutation carriers and lowers breast cancer risk, too.) But this is also a factor of age. I got my genetic test results when I was 30; if I was going to do something, it was going to be the mastectomy. (Incidentally, I've noticed a generational divide on this issue. Many young previvors like myself are eager to take some kind of action, and we don't feel as "attached" to our breasts -- especially once we begin to think of them as ticking time bombs -- so they are expendable. As Bright Pink founder Lindsay Avner told CNN in an interview last year, "I mean, after all, what difference does it make? It's just a boob.")

On the other hand, ovaries make a big difference. And their absence has lasting effects on your whole being, body and mind. Aside from instantly losing all the estrogen in your body (which can affect everything from libido to body weight), women in surgical menopause are more prone to cardiovascular disease. But most troubling to me, women who undergo oopherectomies are at elevated risk for memory loss, dementia, and, as this report kindly euphemizes, "cognitive decline." Let me be clear: THIS SCARES ME SO MUCH MORE THAN OVARIAN CANCER EVER COULD. My brain is my most prized possession. I take great care to exercise it. I need it to work, to teach, to write. I am in the midst of what I hope is a long and successful career in academic publishing, and you can't even imagine how heady my work is. If my brain turns to mush, I'm fucked. In other words, it's the side effects of the oopherectomy that have me scared, not the disease it's intended to prevent.

I've been thinking a lot about aging lately. I've been picking grays from the Susan Sontagian-sweep of my crown, I'm spending a small fortune on night creams designed to minimize my crows feet, and I'm slowly beginning to accept I'm not a kid any more (even if I still occasionally act like one). I think there is a lot to look forward to in life, and imagining getting old before my time (and not just physically) scares the crap out of me. Cognitive decline in my early forties does not jive with my definition of quality of life. (Incidentally, I plan to avail myself of any and all hormone replacement therapies. This might alleviate some of the side effects of menopause, but considering I feel like I just got my period, oh, last week, it's still hard to even imagine the M word in my near future.)

It's clear I have not accepted -- at least with the same grace I did my breasts -- that my ovaries will have to go. But I've got some time to get used to the idea.

In the meantime, even though there are no reliable methods of detecting ovarian cancer at an early stage, I'm doing increased surveillance. And I do so with the complete understanding that it's a bit of a charade. Last Wednesday, I saw my ladydoc, who is also a BRCA+ babe, and she wrote me a script for my twice-yearly transvaginal ultrasound and CA-125 blood analysis. These two tests are currently the only screening options available to women at high-risk for ovarian cancer, and they are pretty much medical hocus pocus. And elevated CA-125 score could indicate something amiss, or it could uncover routine fluctuations in your hormones. Ultrasounds only detect things big enough to see, which is usually when things are already in the shitter.

But, I play along. I like sleight of hand tricks. I like smoke and mirrors.

As I laid, legs splayed, feet in stirrups, and watched as my insides were projected on a high-definition television screen above my head, I wasn't scared; I was skeptical. What are those undulating masses on the screen? And how can anyone discern anything from that grainy picture? My doctor assured me my ovaries were "lovely." I just saw static on the screen, but, hey, if you say so. I had my blood drawn for the CA-125; again, I wasn't scared. I was resigned. Resigned to play along. Resigned to wait for something better. My score was a 7. I'm -- so far as any one knows -- in the clear.

So this is my life with my ovaries. An oopherectomy at 31 is not the right choice for me. It may be for someone else, and I support that decision, as long as it's been reached with an understanding of all its consequences. But I guess in the end, I'm not for or against anything. I'm just trying to find my way through this mess, just like everyone else.