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.


  1. I am in awe of your strength and positive attitude in the face of all this, and I've found myself to be both educated and humbled by reading this blog. When my own doctor brought up genetic testing, I broke out in a cold sweat and didn't even want to discuss it--my family has a similarly frightening cancer history and I'm scared as hell to face the truth about my genetic makeup. But reading all this has made me reconsider, and I'm going to learn more about the procedure. You're doing a great service by being so incredibly open about all of this. Preach, sister! (And if you ever want to talk non-electronically about anything, I am here for ya.) Love, Linds xoxo

  2. OMG I had the exact same experience... the waiting, interminable, the verdict so quick I barely registered that she had said the word "positive". She sat down with the envelope and I just kind of assumed she would give it to me to read the result, so I could savor (?) the not knowing just a little longer and make last minute preparations for The Knowing in my head. I was not expecting the quick sit-open-"positive".

  3. Interestingly, I don't have a cavalcade of doctor's appointments now. I just have Knowing. I'm not done with my boobs OR my ovaries yet. I had a clinical exam while I was at the center, and my next one won't be until Octoberish. My 7 month old is still almost exclusively nursing, so there's no imaging to be done on my lactating time-bombs. So what I do? Look for blogs, of course. Post on forums. Sign up for a study. It's all I can do and by god I need to "do something".