Friday, April 17, 2009

It was the breast of times, it was the worst of times

This week, I have slowly been "coming out" to my friends about my BRCA2 status and this blog. To be honest, I'm more sheepish about admitting to being a blogger than a genetic mutant. (I keep waiting for someone to say "2003 called. It wants its technological trend back.") It's not that I'm afraid that people will read this blog; I'm afraid people won't. I enjoy the idea of blogging because it's a bit like purposefully leaving your diary open on a bus stop bench; you know some stranger is going to happen along and be too curious to resist. But what if no one is waiting for the bus? (Forgive my clumsy metaphors; I'm a huge fan of them and have no plans to drop the habit of constructing them.) Sometimes I think mine is the most interesting story in the world to tell; sometimes I worry that no one will care. There are lots of ladies out there like me, and many of them are writing about their experiences; this both makes me feel grateful to be part of a community and humbled because I've been stripped of the sick power that derives from convincing yourself you are the only one in the world with a particular problem. In the past few days, though, as I've explored the BRCA blog community, I've come to feel normalized. And this has helped me tone down the anxiety and fear that so consumed me earlier in this journey.

Anyhoo, when I sent an email to some close friends about my boobs earlier this week, I created a list of questions they might have, which I called a YAQ (which stands for Your Anticipated Questions and is fun to say because it is a homonym for a breed of long-haired Himalayan bovine). I thought it might be worth posting here in a slightly modified form in case any stragglers that aren't obligated to read this by the laws of friendship and family stumble upon my blog. This will help 'em catch up on what this lil project is all about.

So what’s wrong with you?

Nothing yet. But I’m a BRCA2 genetic mutation carrier, which means I am at high risk for developing certain types of cancers, most notably breast cancer and ovarian cancer; in raw numbers, I have an 85% chance of developing breast cancer at some point in my life and a 40% chance of developing ovarian cancer. I don’t – as far as I am aware – have cancer, but basically what the diagnosis indicates is that it’s not a question of if but when.

How did you find out about it?

My father’s family (from whom I got the gene) has been plagued by cancer throughout the generations. An astute aunt compiled, after my 31-year-old cousin was diagnosed with breast cancer last summer, a family history of cancer diagnoses and deaths in the family and took those findings to a genetic counselor. From the history and a blood sample, it was concluded that the BRCA2 gene was present and likely responsible for much of the cancer in our family. So everyone got tested. Some people had it. Some people didn’t. My grandfather had it. My dad has it. And now I do, too (there was a fifty percent chance that I wouldn’t have the gene, but, you know, shit happens).

OMG Do I have it too?

Probably not. The mutation it most prevalent in the Ashkenazi Jewish community (and apparently parts of Eastern Europe, from where my family hails), but its incidence in the general population is estimated at 1 in 800, so it’s rare as raw meat. And family history is really the greatest indicator of genetic predisposition. So if your family is healthy and the old folks die of boredom, you’re probably in the clear.

That sucks for you.

That wasn’t a question.

How do you feel about how much that sucks for you?

I’m dealing with its suckiness. Today I’m feeling like it’s no biggie. Tomorrow I could be immobilized by fear and grief.

So what’s the plan?

The worst thing to do right now is to do nothing, so I’m weighing my options. There are three approaches to responding to this diagnosis. The first is simple vigilance: get screened often so as to catch any lumps and bumps in the early stages. The second involves a five-year course of a chemotherapy drug called tamoxifen, which will send me into early (and temporary) menopause; this will cut my cancer risk in half. The last option is also the most radical: a bilateral prophylactic mastectomy. In layman’s terms, that means cutting off your boobies before they kill ya. I’m leaning towards doing this.

Wait, what? What are ya nuts?

No, not clinically. But listen, I know it’s radical. I know it seems extreme. But here’s the thing, I have and 85% chance of getting breast cancer. If I don’t have breasts, my chances plummet to less than 5% (which is well below the national average of 10-12%). Trust me. I’m not thrilled about it either. I love my breasts. They’re really lovely. They have brought me many years of joy, and have enriched the lives of many. But they ceased being so awesome the moment I learned they could kill me.

But what about just being vigilant, getting routine screenings and regular exams?

For those of you that do not know me personally, the truth is that I can be, well, a little anxious. I’m no good at waiting for bad news; I can get a little unhinged. So the monitoring approach doesn’t really suit me. Like I said, it’s not a question of if but when, and getting screened four times a year translates to four periods of terrible anxiety as I wait for the (possible) bad news.

Ok, but really, a mastectomy?

Here’s an analogy, clumsy as it may be. Suppose you were told that there was an 85% chance you would be in a plane crash – which may or may not kill you -- at some point in your life. (Right there, I’m guessing most of you would opt for the train.) You could hedge the odds a little, however, if you became an airplane mechanic; but even if you personally inspected every plane you flew on, you would not be able to prevent the crash, only know in advance that it was going to happen (so, theoretically, to extend the metaphor, you could make sure you have an exit-row seat on that flight). The only way to reduce your risk of being in a plane crash would be to not fly. So that’s, in metaphorical terms, what I’m going to do.

What about your ovaries?

Slow down there, pal. I’m getting my knockers lopped off. I can only deal with the removal of one ladypart at a time. (The non-smart ass answer is: I’ll probably need to say bye-bye to those, too, but not for about ten years if they remain cancer-free.)

Why are you writing publicly about this very personal thing? It’s your boobs. Shouldn’t you be a little more, well, modest?

Probably. But the truth is, advocacy and activism regarding BRCA mutations are still in their infancies; only recently has genetic screening become more common among women with families histories of cancer. I feel like, by sharing my story, I might be able to contribute to the nascent culture of personal narratives on this subject. I also wanted to create a forum where I could stay in touch with my friends and family throughout the process. And this seemed like the best forum to do this.

Wednesday, April 15, 2009

Take my boobs, please

I had my first (and probably last, for now at least) appointment with a breast oncologist yesterday. Turns out unless I opt to take tamoxifen, a chemotherapy drug that will send me into fits of (early and temporary) menopausal symptoms and cut my risk of cancer in half but only if I can tolerate the drug everyday for FIVE YEARS, I won't be seeing her again. The breast surgeon, with whom I meet in two weeks, will be the one ordering MRIs and additional scans, still-life portraits, and needlepoint patterns of my breasts. The breast oncologist didn't tell me much I didn't already know, although she did comment, and the resident nodded in agreement, that my breasts are very dense, which is news to me, because I haven't ever had any other set of breasts growing on my body to compare them to (the medical reason for noting this, I suppose, is that dense breast tissue makes it difficult to find cancer in mammograms because cancer shows up as white on the films, as does dense breast tissue -- a fact that was confirmed when G picked up my films from the radiology department in advance of my appointments at the end of the month and we held them up to the light and my boobs appeared filled with spidery networks of whiteness, which I'm guessing isn't all cancer, or else I'd probably not be typing this right now). I asked her if I should reduce my soy intake given preliminary findings that suggest it might contribute to breast cancer (let me just pause to say how devastating this would be for my diet: as a vegan, I consume probably 1000% more soy than the average carnivore, and I would so very much miss soy in the many delicious forms it is conveniently packaged in -- Trader Joe's Soy Nuggets, I'm looking at you and salivating). She said there was no strong research to suggest a risk but said that the biggest risk reduction lifestyle choice I could make (if I decide to keep my breasts for a few years) would be to stop drinking alcohol. Now, as many of you may have seen, heard, or read about in police reports, I likey the sauce. And in a world where I'm required to be constantly vigilant for the onset of the big bad C, I'm going to need a few stiff ones to get me through the waiting. So, all of this is to say that hearing that recommendation made me even more sure of my decision to pursue surgery. I may be titless, but at least I'll be good and drunk. As a footnote, I followed doctor's orders last night with a glass of white wine with A (which turned into two and half glasses because bottles were half price, and, economically, it would have been disadvantageous not to take the fine folks at Feast up on the generous discount). Wine 1, boobs O.

Monday, April 13, 2009

On being positive and staying positive

I learned on Thursday that I am a carrier of the BRCA2 genetic mutation. I was tempted to write just then, On Thursday, my worst fears were realized. But that seems a little dramatic (having just seen the Diving Bell and the Butterfly, I sort of measure everything in my life now against Jean-Dominique Bauby's locked-in state -- whereby he could communicate with the outside world only by blinking his one working eye -- and having BRCA2 is like a hang nail compared to that). Although the waiting was interminable, the diagnosis was quick: my ass had barely hit the chair in the genetic counselor's office before she had opened the file and said something to the effect of "Let's not draw this out, you have the mutation." She had other words of wisdom, cliche as they might be: "It was a coin toss and we came up with the wrong side." I actually return to that, because I think, even in its ineloquence, it really captures the randomness of my -- and anyone else's -- genetic heritage. I knew from the start I had a fifty percent chance of having the mutation, but I also sort of knew all along I was a carrier. Why do you think I started blogging in advance of the results? Answer: I needed an outlet for the emotions I knew would surface during this journey.

I cried when I learned. But not immediately. You know how when babies cry, they scrunch up their faces and their cheeks and foreheads turn red and they open their mouth and no sound comes out for a good second or two before the torrent of noise and tears comes? It kind of felt like that. I nodded, examined the document on the table thoughtfully, likely inhaled and exhaled several times (though I have no recollection of how I sustained control of basic motor functions), and then cried. That time between: shock. A doctor wearing a pink shirt came and joined the counselor, G, and me in the cramped office (which, like the garbage compactor in Star Wars, seemed to have walls that were closing in on me); I tried to listen to the words that came out of his mouth but only managed to hear the phrase "high risk women." That is the group of which I am now a part. There is a name for what I am, and a community of people who are like me. That is both comforting and frustrating, given that I do so much in my life (eat vegan, wear seat belts, avoid sex with intravenous drug users) to make myself low-risk. But this is genetics, kid, I tell myself. It trumps all lifestyle choices.

Lest you think I'm ordering burgers, joyriding, and bonking junkies, I'm not. I feel like I can deal. Don't get me wrong. I have in the past few days been overcome by emotions, especially when faced with the thought of my own mortality (engendered, embarrassingly enough, by the Ricky Gervais movie Ghost Town, which, admittedly looks like a remade Bill Cosby project but is actually very funny and utterly charming -- I'm on a movie kick, yes). I have had trouble sleeping. I have awoken in the night unable to think of anything else. But I decided long before I knew whether or not I was a carrier that I wouldn't let the outcome ruin my life. So I am trying to go about my daily bidness as usual. And for the most part, it's working.

Up next: the cavalcade of doctor's appointments. First opinions! Second opinions! New patient questionnaires galore! The real adventure is about to begin.

Wednesday, April 8, 2009

Knowing, not knowing

To say I've been consumed by anxiety and fear these last two weeks would be a vast understatement. I vacillate wildly between a nearly locked-in feeling that the world external to me has no relation to my inner life (imagine walking through a busy downtown interchange, your ears stuffed with iPod buds, only you're too deafened by your own thoughts to even tolerate music and the noise that's keeping you from connecting to the world around you is your anxiety), which I have affectionately dubbed "head-up-my-butt" syndrome, and an eerie calm that feels false and unsettling (this most recently happened when I shared with someone what I was going through and he listened, mouth agape, brow furrowed with obvious concern, and I heard words coming from my mouth that sounded so devoid of the emotions that should accompany them that I thought for a moment that I had actually reached some kind of plateau of acceptance, but, in reality, my words bespoke a strong sense of denial). I find myself measuring time and events in a kind of knowing/not knowing continuum. (This probably derives from my OCD.) Last night, I had dinner and drinks with J, and as I kissed her goodnight, I thought, this is the last time I'll see her before I Know. The last time I'll step across the threshold of her apartment and into the hallway and press the elevator button and walk through the glass doors and out into the street before I Know. But this has been going on all week. At the gym: this is the last time I'll run on this treadmill before I Know. Riding to work: This is the last time I'll press the seatbelt release in K's car before I Know. Walking into work: This is the last time I'll step on that sewer cover before I Know. This morning: I woke up in a panic thinking that today was the day I would Learn but was relieved to realize I had one more day, one more night to sleep, to toss, to turn, to dream before I Know.

Last night at dinner, J suggested that by even entertaining the idea that I am a carrier I was disrupting the positive energy forces in the universe that decide my fate. She's a big fan of positive visualization and actualization, and I myself am a huge fan of magical thinking (I have OCD after all, which is nothing more than an elaborate framework of bargaining--if I touch the doorknob correctly, I won't be BRCA2 positive--to control the chaos of life), but I had to put my foot down here. Most people I've told have suggested gently I wait until I Know For Sure to start thinking about What I'm Going To Do, but in my defense, I need to prepare, to think through the possibilities, the options, the outcomes. I need to mentally gird myself so that I'm not caught unaware, afraid, uneducated should I face the reality that I am a carrier. And the truth is, this is genetics. There is no bargaining, there is no magic. If I have it Thursday, I have it now, and I've had it my whole life. And if I don't, I didn't have it today or yesterday or any other day of my life. It comes down to the very stuff I'm made of, the blueprint for my being, and, after a lot of struggle with acceptance, I actually kind of like how I've turned out: I'm tall and curvy, I have erratic yet charming curly hair, and my hazel eyes adapt to match my outfit. I can't change the genes that gave me the things you see on the outside anymore than I can change the genes that determine my ability to suppress tumors on the inside. This ultimately will be a journey about accepting myself, for better or BRCA, and I feel about as ready as I'll ever be to Know.