Monday, October 18, 2010

Spokeswoman Redux


Long time readers may remember my debut as a (I've Never Had) Breast Cancer Spokeswoman last year. The text of my speech, which I delivered as part of a fundraising partnership with a sorority at my alma mater, can be found here.

The sorority once again partnered with FORCE this fall, once again held a fundraising event to benefit mutants like me, and once again invited me back to speak. This year's talk was a lot more informal -- I was invited to chapter dinner (A surreal experience to be sure; in a former life, I too was a sorority girl -- shhh! don't tell anyone -- and vaguely remember dinners like that. In fact, it was pretty much as I recall (as if from a movie I saw once starring someone that looks a little like me), except all of the girls seem to be about twelve, wear gym clothes -- regardless of whether they have been or are going to the gym -- and have smart phones.) and spoke casually in their living room afterward. The idea was to put a face to FORCE -- to show them how their fundraising helps people like me, and how FORCE is a unique organization that addresses a small but underserved portion of the population. I also got a chance to update them on my progress since I saw them last. Overall, I think it went rather well. My speech is below.

Thank you so much for having me here tonight, and for inviting me back to speak to you again. I’m so grateful that you have taken such an active interest in promoting breast cancer awareness and for supporting FORCE, a group very close to my heart.

For those of you who heard me speak last year, you may hear some things you already know. But for those of you who I am meeting for the first time, I want to be very clear that I’m not here tonight to scare you. I’m hear to teach you about something that, until it came into my life, I’d never heard of. I’m here to make you smarter than I was so that should this ever affect someone you know, you’ll be a step ahead.

Basically, I’m hear to talk about breast cancer, but I’m not your average breast cancer survivor. In fact, I’m not a breast cancer survivor at all. Let me explain. I am a BRCA2 gene mutation carrier. Essentially, I have a typo in my genetic code. Though the error may be small, the problems it causes can be huge. Because of this little misspelling, my body can’t suppress tumor growth, especially the kind of tumors that like to make their home in soft, dense breast tissue and my delicate reproductive organs. And because of this, I’m much more likely to develop breast cancer—-about seven to eight times as likely as the average woman—-and if I did, it would likely strike me young, be very aggressive, and probably recur.

Women like me, who are not yet sick but are facing a nearly 90% lifetime risk of breast cancer, are called “previvors.” We are survivors of our predisposition to developing breast cancer, and we “survive” by taking steps to control our health, and to do so we have a couple of options: 1) we can submit to a intensive routine screening: mammograms, MRI, ultrasounds, and clinical breast exams, every few months; 2) we can take a chemoprevention drug that puts us into temporary menopause for five years and lowers our risk by about half (in other words to about 4 in 10, but still three times or more the average risk); 3) or we can chose to have preventative surgery. In other words, we can opt to remove our breasts before they ever try to kill us. Or, as I like to think of it, we have the mastectomy we’d probably have eventually anyway, but we get to skip the chemo and radiation and, oh yeah, the whole having cancer thing, too.

Those of you that saw me speak last year know which route I chose. When I stood before you then, I was a little more than two months away from a preventative double mastectomy, and I was absolutely terrified. But tonight I stand before you a completely changed person. On the outside, I don’t look that different. Sure, I have bangs now, but otherwise I’m pretty much the same. There are a few things you can’t see, however. Underneath my clothes, I have two proud scars stretching from one end of my breast to the other like little smiles. And in place of my breasts, my beautiful natural breast that, despite their benign appearance, may have tried to kill me, I have silicone implants. They are a little bigger than boobs 1.0, and they are always a few degrees cooler than the rest of my body, but they are very reasonable facsimiles of the originals, and I wear my new breasts with deep pride. But look even deeper, and you’ll see something else: something even more remarkable than the incision lines and the fake rack. I’m at peace. I’m not scared anymore. I don’t have to fear breast cancer anymore. When I stood before you last year, I was positively vibrating with terror. I lived in a thick fog of fear, anxiety, and worry. And it was only after that fog had lifted, after I awoke from surgery and began to heal, that I realized how truly paralyzed I had been.

But, this isn’t just about me. This is about you. And here is why my story matters to you: knowing what I’ve told you, I want you to think about your own families. Do you have multiple female relatives who have developed breast cancer? Two or more women with ovarian cancer? A male relative with breast cancer? If so, these are indications of a possible hereditary pattern. Now, before any of you burst into tears and think, I don’t want to chop off my boobs!, I want to urge you to take a deep breath. The whole purpose of genetic testing (the process by which you determine your risk and whether or not a gene mutation will increase it) isn’t to scare you (nor is that the purpose of my visit tonight). It’s to empower you. Ninety percent of breast cancers just sort of happen, and there is very little one can do to prevent it. But in my case, and in the nearly ten percent of cases of breast cancer that are hereditary, there is something you can do. It doesn’t have to be the same choice I made. But you can be informed, screened, and in control. You can learn your risk of cancer before you get sick and made choices to ensure you never will. Chance are very slim that any of you in this room will ever face what I did. But if you do, I hope you will remember me and see that I made it through the ordeal and am better for it.

When I was a student at NU, breast cancer was the farthest thing from my mind. And in a lot of ways, I hope it's not something that any of you dwell on, either. So take what I say tonight and store it away. Don't let these -- the best years of your life -- be haunted by anything but optimism and hope for the future. And should you ever have to deal with something sinister, reach out and find a community. I wouldn't have made it through what I did without the support, first off, from my husband and my family, but also from the women of FORCE, the women who know what it's like to feel like a mutant, to feel so scared you can't move, and then again to feel so happy you think you might burst. I've been through a lot these last years, but fundamentally I'm still the same. If anything, I value life and the people in it so much more because I know nothing is certain. Facing illness can most certainly be a life-affirming experience.

I know it might sounds crazy, but I consider myself lucky. I’d rather go through what I did –- surgery and reconstruction -– than face months on end of chemo. And I like to be able to look forward to the future without having to worry whether I’ll be around for it. I used to have an 87% lifetime risk of breast cancer. Now I’m free. Thank you so much for having me. I'm happy to answer any questions you might have about my experience or about hereditary cancer.

6 comments:

  1. Great job, S! What an awesome speech you delivered. I'm in your pre-stage -- a fog of anxiety, and just 4 weeks away from my surgery. I know that I'll see peace on the other side. Tonight, today, these few weeks, however, you know better than anyone, I'm living scared.

    Can't wait to join you on the Fog-Free side, sister!

    Liza

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  2. Sistah previvor...I LOVE your speech...as one of the women featured in the new book Previvors,facing the breast cancer gene and making life changing decisions, Your speech affirms our shared journey but with such humor and grace...thanks so much for re telling our story, for spreading our message and for giving kudos to FORCE the mighty org which gave us power!

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  3. You are a true inspiration and role model even if you don't feel like one. You are so beautiful and again from the bottom of my heart thank you, thank you, thank you. XO H

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