Friday, April 9, 2010

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.


  1. Happy BRCAnniverary!(I can't even pronounce that)!

  2. Happy anniversary, Steph.

    My dear friend Lindsey H. introduced me to your blog...we've been friends for 10 years and last week I called to tell her that I just tested positive for BRCA2.

    I dove in to your blog and read every single entry over the weekend. I can't tell you how much I appreciate you sharing your story...not only is it filled with the information I so desperately need right now, but also because you write with such grace, humor and eloquence. As I read your story, I laughed, I cried...and I cried some more.

    Sending you my love and most sincere thanks.


  3. Happy anniversary. Your words ring so very true! I found out of my positive status on 3/27/09 and had my mastectomy on 6/5/09. what a whirlwind! I wonder if I will ever not remember those dates as so very lifechanging?!

  4. Thanks so much to everyone for their thoughtful comments. A warm welcome, especially, to Nicole. I'm so sorry you have reason to join our little club, but I'm glad you are here and found my blog. Say hi to Lindsey for me!