Saturday, October 17, 2009

The Keynote Speaker Has Left the Building

I made my debut as a breast cancer spokeswoman last night at a education/awareness event that represented the first collaboration between the Chicago FORCE chapter and college-aged women. The sorority with whom we partnered was fantastic, and the women were gracious, curious, and kind. (And I fell a little in love with a few of them, over bubblegum pink martinis, after my speech. Ah, college. So boozy.) Although I fear that we might have inadvertently freaked a few of them out. Anyhoo, I got some very positive reactions to my speech, so I thought I'd post it here for those who couldn't make it/were there and want to relive the magic/or are just curious. I've anonymized some of the personal details, since this blog is still semi-anonymous, but otherwise, to get the full experience, imagine a girl with curly hair, wearing a bright pink dress (illustrated above and no that's not me), with wavering voice, delivering this speech, occasionally pausing to apologize for her nervousness and to take drink of ice water. That's pretty much what it looked like.

Thank you so much for having me here tonight. As H mentioned, I’m a NU graduate, so I’m really thrilled to be here tonight talking to you about something that is so important to me.

Well, let’s cut to the chase. I’m here tonight to talk about boobs. Your boobs. My boobs. (Well, mostly my boobs.) It’s a subject that is near (literally) and dear to my heart. I’m not ashamed to admit I am quite fond of my boobs. When I was a little girl, I used to pray every night for them. And then, at long last, they arrived. And they’re pretty fabulous, if I do say so myself. But—and here is the big but—I have a much different relationship with my boobs today than I did even a year ago. And that’s the story I’m here to tell you tonight.

But before I even get started, I want to be clear that I’m not trying to scare any of you. Although some of what I’m about to tell you may make you uneasy, I want you to know that I’m here tonight to educate you, so that you in turn can help educate your friends and families, so that you have the information that I never did when I was your age.

Let’s start with the big picture stuff first. Breast cancer is a devastating disease, and there probably isn’t a single person here tonight who hasn’t been touched by it in some way. The average woman has a 1 in 8 chance of getting breast cancer at some point in her life, and, aside from skin cancer, it is the most common form of cancer in women. And behind heart disease, it is our second most common cause of death.

But I’m sure you know most of that. Or at least know it in the same way you are aware of things that don’t really seem much to apply to you. And why should it? You guys are so young! Life is full of possibility, and your health is limitless. Breast cancer, even as recently as a year ago, didn’t really register on my radar, either. I mean, it wasn’t something that would ever happen to me.

But yet I’m standing here in front of you tonight. So what changed? Well, I’m not here as a breast cancer survivor. I’m not sick. I’m here as something a little different: I’m a breast cancer previvor. That’s probably a word you’ve never heard before, and six months ago, neither had I. But here I am, a previvor. What is a previvor? Well, I’m a survivor of a predisposition. In this case, I have a predisposition to breast and ovarian cancer. Remember how I just said that the average woman has about a 12% chance of getting breast cancer? Well, I have a nearly 90% lifetime risk of getting breast cancer. That’s more than seven times the odds of the average women walking around campus. But-—and this is why my story is still the story of a survivor—-I’m not going to get breast cancer. How? Well, I’ll tell you in a minute. But let me first catch you up on how I got to be standing in front of you tonight.

I grew up in a hearty family. Illness rarely penetrated our lives. When I was very young, my grandmother got breast cancer but quickly, it seemed to me, she got better. And she stayed better for almost 20 years. Both my parents are alive and well, and my brother and I have been healthy all our lives. Aside from my grandmother’s brief illness, cancer really hasn’t been a part of my world.

But all that changed last August. Exactly a week after my wedding to my handsome husband (who is here tonight supporting me), I got an email from my father. The subject line said, “Something Important.” Looking back on this, I realize that this was a huge understatement. Something important is like “don’t forget to pick up a loaf of bread on your way home.” Something important is “don’t forget to get the dry cleaning.” The subject of my dad’s email should have read: “This information will change your life.”

In the email, my father told me that J, a second cousin I barely know and who I see only once every few years, had been diagnosed with an aggressive form of breast cancer. She was only 31. J was the seventh woman in my father’s extended family to develop breast cancer, but it seems that many cancers—-including ovarian, colorectal, pancreatic, prostate, and leukemia—-have been killing us off for generations. And it turned out there was a problem, a problem with the H family DNA that was causing all these cancers. My father wrote that a rare genetic mutation had been found. It was called BRCA2. And there was a chance I could carry it.

When I read my father’s words, they terrified me. But at the same time, I had no idea what he was talking about. I had no idea what a BRCA2 gene was. I didn’t know what it did, what it stood for, what it meant to me. I mean, the email could have said that the H family has a genetic mutation that causes us to grow unicorn horns out of our foreheads. At least then I could have pictured what was going on.

But probably what troubled me most was that I had to radically shift my thinking about cancer in my family. When I said before cancer didn’t affect me life, it was because I was only thinking in terms of my immediate family. On my small branch of our larger family tree, we had been spared, at least so far. But in the bigger picture, cancer was rampant.

My father’s extended family is quite large. His father was one of nine, and their children and their children’s children constitute an ever expanding brood. In a tradition that began long before I was born, the H's would gather on Thanksgiving in the basement of a Ukrainian Orthodox Church in Wilmington, Delaware. This was the only time I ever got to meet some of the names I would later recognize on our family’s cancer history chart. In that basement, three and sometimes four generations of family would convene, year after year, for a buffet style feast that began at 2 p.m. sharp. Each family branch—-the descendants of the nine brothers and sisters—-had their own table. Directly behind ours was a table whose numbers seemed to dwindle every year; I vaguely remember hearing my parents discuss N, who had ovarian cancer, or L, who had breast cancer. But it wasn’t until now that I realized why they'd stopped coming to Thanksgiving. They had died. That was how cancer worked in our family. One year you ate turkey with us; the next you were gone.

After my father’s initial email, as I started to understand more about how the BRCA gene affected my family, I also got curious about the gene itself. It turned out that that my mutation has a nickname: it’s called the breast cancer gene. I also learned that everyone has BRCA1 and BRCA2 genes, but mutated genes, like the one found in my family, can’t suppress tumor growth. BRCA genes are passed down from parents to their children, from moms and dads both to sons and daughters; a parent with a mutated gene has a 50% chance of passing it to their child.

When my father sent me that first message in August, he hadn’t yet been tested for the mutation. All we knew was that the gene was “in the family.” But in December, my father had his blood drawn. On Christmas Eve, he got the results: he was positive for the BRCA2 mutation. That meant I had a 50% chance of inheriting it from him.

At this point I had to make a decision, and I did it rather quickly: I wanted to know if I, too, carried the mutation. I wanted to know my genetic fate. No matter what the results, I wanted to know what my chances were so that I could everything in my power to beat the odds. It never occurred to me not to get tested, but I understand that some people may decide they simply don’t want to know. For me, knowing that the gene was so close, so possibly part of my own genetic makeup, I truly felt I didn’t have a choice. It took me a few months, but I finally got the nerve to call for an appointment. On April 9, with my husband by my side, I learned that I, too, carry the BRCA 2 mutation.

Even though I had mentally prepared myself for the worst, I was still devastated when I learned the news. It was like I walked into the doctor’s office a normal woman and left with a death sentence. I had always prided myself on being a healthy person with healthy habits. I’ve been a vegetarian for 12 years, I exercise regularly, and I don’t smoke. And most of all, I thought, I was too young to ever have to deal with any of this. But you can’t argue with genetics. Inside of every cell in my body, there was this errant, miscoded gene, and simple things like living a healthy lifestyle would never change that. In a moment’s time, left my former carefree existence and embarked on life as a woman at extremely high risk for breast cancer.

So now what? I thought. What are my options? Well, it turns out I had a few, none of which were all that spectacular. First and foremost, I needed to get a mammogram. And after that, I would need to get an MRI. And then after that, an ultrasound. And then after that a clinical breast exam. And then, after that, start the process all over again. In order to find any suspicious changes in my breasts, I would need to have some kind of breast test every three to four months. For the rest of my life. Or until they found cancer, whichever came first. Surveillance like this can’t prevent the cancer from coming, but the hope is that when it does, it will be caught early. I have always been a nervous test-taker, whether it was the SAT or at the DMV. So the idea of going through all that anxiety and then still getting cancer didn’t appeal much to me at all.

The second option involved a five-year course of a medicine that would reduce my cancer risk by half. But on the flip side, it would shut down my ovaries and send me into early menopause. To that I said thanks, but no thanks.

But the last option was truly the worst of all: preventative surgery. Since I had such a high risk of getting breast cancer in the first place, the only way I could really ensure I wouldn’t ever get sick would be to get rid of my boobs before they ever tried to kill me. I mean, chop off my perfectly healthy, perfectly beautiful breasts? You must be crazy.

Now some of you might ask, and rightly so, why should anyone, given the options I’ve been presented, get tested for the gene. What good has knowing about this predisposition done for me? Well, my speech was billed as being about how knowing risk for hereditary breast cancer has changed my life for the better. And I’m sure you’re wondering how that could be. But it has. It really has. On a philosophical level, it’s put me back in touch with who I truly am. It’s a bit of a trip to think about your DNA as damaged. Because having a genetic mutation isn’t something you can see, or touch, or feel. If you break your arm, you set it and let it heal. When your DNA is broken, you can’t repair it. And since this faulty gene, this typo-ridden deviation, is in every cell in my body, I can’t remove it. But rather than this alienating me from my body, it’s actually reconnected me to my core emotions.

I’ve always been a cynical, somewhat acerbically dry-witted person. And I deal with things, I hope, with both humor and grace. So when I found myself embarking on this strange journey, I approached it the only way I could. As me. I cracked jokes. I started a blog about what it was like to be a quote-unquote mutant. I have never been shy or afraid to share, so I told lots of people what I was going through. And in doing so, I helped them see that this information wasn’t going to kill me; it was going to make me stronger.

Another wonderful thing that happened to me was that I met a bunch of new friends. When I first learned about my BRCA mutation, I thought I was the only person in the whole history of the world to ever have to go through such a horrible experience. I pitied myself because I thought I was all alone. But I quickly learned that couldn’t be further from the truth. In the last six months, I have met some of the most incredible women I’ve ever had the privilege of knowing. And not only are they smart, beautiful, and successful, they understand me. Because they themselves have BRCA mutations. They know what it sounds like to be pushed into an MRI scanner and have the magnets whirl and buzz around your body. We can joke about doctors with cold hands doing breast exams. And we can commiserate about what it feels like to be scared. And they know what it feels like to doubt.

But the most important thing that has come out of this experience is the sense of power I have over my genetic destiny. Despite what you might think, I consider myself very lucky. Because I got this vital information—-that someday I’ll probably develop breast cancer—-and can do something with it before I ever get sick. It’s kind of like getting a postcard in the mail from your future self, warning you of danger ahead. That still kind of blows my mind. Knowing I have this predisposition puts me in control, not the cancer. I get to decide how I’m going to manage my risk. And I’ve made a choice that I feel very good about.

Two months from Sunday, just up the road at the corner of R and C, I’m having a double mastectomy. Yes. That’s right. After weighing my options, I decided that preventative surgery was the best choice for me. For me, the risks of keeping my natural breasts even a moment longer are far too great. After all, my cousin J was just 31 when she was diagnosed, and I’ll be 31 in 12 days. So I’m getting rid of these boobs I love so dearly and trading them in for new models. It’s been a difficult decision to make—-after all, I’ll be losing a lot, not the least of which is the ability to breastfeed my future children. But I feel like I’m gaining a lot, too. I’m gaining the peace of mind that comes with knowing I’ve done all I can with the cards I’ve dealt. I’m being really proactive about my health. And I’ll also have really amazing new boobs. They’ll be perky and round and they’ll never ever sag.

I know this is a lot to take in at once, and I know some of you are undoubtedly thinking, that girl is nuts. I mean, after all, I could be one of the fortunate ones, right? I could be one of those people that fall into the lucky 10-13% who never get breast cancer. Well, maybe I could. But I’ll never know. It’s not a perfect analogy, but I often ask people this: would they fly knowing that, at some point in their lives, they had an 87% chance of being in a plane crash? Nearly everyone says they’d rather take the train. So that’s what I’m doing, so to speak. I’m opting to take the train.

In closing, I want to wish you all healthy, healthy boobs. It is my sincere hope that none of you ever will have to deal with what I’m going through. And chances are none of you here tonight will. These mutations are very rare: about 1 in 300 people carry them. (Although in some populations, like Ashkenzai Jews, the odds are closer to 1 in 40.) But if you or someone who know has breast or ovarian cancer that seems runs in their families, I would want you to tell them this: learning your BRCA status is a blessing, not a curse. I truly believe that genetic testing saved my life. If I didn’t know I carried the breast cancer gene, I could be blindsided by cancer at any moment. Now I have the knowledge and power to outsmart the disease.

Thank you so much for having me here tonight. I hope that none of you ever have to deal with any of this, but if you do, please know that you are not alone. Thank you.


  1. Amazing job - you speak for so many of us, our fears and thoughts are so alike.

    Congrats on a wonderful speech!

  2. Stephanie seriously rocked the house! She is a true inspiration to all of us. Shirts off to you sister! Biggest hugs and thanks from the depths of my being. XO Heather

  3. You were an AMAZING speaker and today so many girls approached me to comment on how well you spoke and how they would not have known it was your first time speaking if you hadn't said so! Everyone loved you! Thank you so much for having been part of this! Sincerely, Bruna Giberti

  4. I really enjoyed reading that. I am sure it was a great and impactful speech. Bravo!

  5. Yay!!!!! (can you hear the clapping, I'm giving you a standing ovation) -- fabulous speech, you had me completely riveted and I already knew the story. You really have a talent for this :)

    We want my father inlaw to be tested because his mother & sister both had breast cancer...and another sister might have had ovarian cancer. Insurance will cover his being tested but not my husband, since DH has no actual 1st degree relatives w/cancer. I don't think my inlaws totally get all this and are dragging their heels. I'm goint to send them a copy of your speech. I think it is personal, clear, and will be just the ticket to help them understand.

    Great job -- well done, you did SO good :)

  6. What a fabulous speech! You should take that on the road!

  7. You're a great writer. Good luck with your surgery. I am right behind you.