My Story of BRCA, on CNN

Within hours of the news of Angelina’s double mastectomy, I got an email from CNN International, asking if I’d be interested in sharing my story with the world. If there’s any way I can help other women (and men) heading down a similar path, I’m in. [Can’t see the embedded video? Click here instead!]

While not many in the U.S. are able to see the programming on CNNI, I hear I’m huge in Germany. 😉


Boston Marathon Bombing Victims: One Month Later

Marc FucarileIt was just one month ago today that the terrifying events in Boston began to unfold. Within days, one of the alleged suspects, Tamerlan Tsarnaev would be dead, his brother Dzhokhar captured and facing charges. But while law enforcement acted fast to bring the brothers to justice, victims of the bombing are at the beginning of a long road ahead. Here are a few of their stories.

[Photo left: Marc Fucarile receives handmade cards from his son, Gavin. Also pictured is his mother, Maureen.]

Marc Fucarile The father of 5-year-old Gavin remains hospitalized at Mass General Hospital. According to the page created by his sister, Stephanie, “His right leg has been amputated above the knee and he has first, second and third-degree burns on over half of his body. His left leg suffers from two fractures and shrapnel litters most of his body.” Marc has undergone several surgeries with more each week, but Marc’s strength and determination is evident in each update posted.  [Click here for updates and to make a donation]

J.P. and Paul Norden The brothers, and friends of Fucarile, both lost legs in the explosion. This week, they were finally reunited at Spaulding Rehabilitation Center and will be treated under the same roof. Paul’s longtime girlfriend, Jacqui Webb, was also injured in the attack. For updates and to make a donation, click here.

Celeste and Sydney Corcoran The mother/daughter team began their recovery side-by-side at Boston Medical Center. Celeste, who lost both legs, and Sydney have proven that family is the most important this, as evidenced by the banner reading “Corcoran Strong” hangs on the wall of Celeste and Sydney’s hospital room. [NPR]

Adrianne Haslet-Davis The professional dancer made as many headlines for her attitude as she did her injury. “I absolutely want to dance again and I also want to run the marathon next year,” said Haslet, who lost her left foot in the blast. “I will crawl across the finish line, literally crawl, if it means I finish it.” Haslet was also honored on ABC’s Dancing with the Stars” [ExtraTV]

Roseann Sdoia According to her GoFundMe page, Sdoia “was severely injured as a spectator at the Boston Marathon on 4/15/13. Roseann suffered serious injuries as a result of the explosions and has lost a leg above the knee. She has undergone several surgeries; first, to stabilize her and perform life saving measures and also to remove shrapnel from her abdomen. Surgery was required to remove a portion of a tree that became a projectile and seriously wounded her left leg. And most traumatic, the amputation of her right leg and burns covering portions of her body.

Boston Mayor Thomas M. Menino spoke earlier today about the city’s resilience in the wake of the attacks.“I think the city went in strong, came out strong,” Menino said. “I think the city has reacted in the proper manner over the past month or so. I had dinner the other night for 130 of the survivors and it gave me strength to be with those families and individuals.”

To help support all of the victims in the Boston Marathon, visit One Boston Fund.

Do you know of other victims of the Boston Marathon who need our help? Please tell us about them (and include a link to their support page) in the comments.


Angelina Jolie with her mother, Marcheline Bertrand

Angelina Jolie Has Breasts Removed

Angelina Jolie with her mother, Marcheline Bertrand

I don’t know Angelina Jolie. I’ve never met her… or even seen her on the streets of Los Angeles, where I live. But tonight, Angelina Jolie has officially rocked my world and made me feel things I can’t even describe.

Because tonight, Angelina Jolie has come out, sharing that she is BRCA positive. What does that mean? It means a genetic mutation in her body gives her an 87 percent chance of breast cancer, 50 percent ovarian risk (the same cancer that took her own mother at the age of 56). It’s a genetic mutation I’m quite familiar with, because I have it too.

And like me, Angelina Jolie opted to do whatever she could to drastically decrease the odds of being diagnosed with cancer — she underwent a prophylactic bilateral mastectomy, which she writes about for the New York Times.

Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.

On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.

By going public with this, Angelina has an opportunity to educate those who might not understand the genetic risk and open a dialog that can lead to more research, resources and support for those who need it.

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be will able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.

I’ll probably never get to tell Angelina how much her going public with her story has touched me and potentially helped so many. But if I did, I would share how I, too, understand what it’s like to lose a mom too young… how I know how it feels to have cancer hang over me every single day, leaving me terrified that I’d ultimately be taken from my husband and children. I’d share my eternal gratitude for her courageous fight and important way she’s come forward to share her experience with the world. [Hey, we could also compare notes on having biological and adopted children, along with studly and supportive husbands, right?]

Thank you, Angelina Jolie, from the bottom of my heart.


Miss Tectomy: How Losing My Breasts Made Me Feel Beautiful

Breast Cancer Awareness: THIS Is Why I Tell My Story

Photo By Renee Bowen Photography

Miss Tectomy: How Losing My Breasts Made Me Feel Beautiful

Photo By Renee Bowen Photography

[Photo by Renee Bowen Photography]

I remember the first time I noticed my breasts. They introduced themselves quietly — albeit painfully. I was tummy-down on my bedroom floor, listening to my record player and sifting through the clutter under my bed, searching for my autographed photo of Ronald Reagan (true story).

Ouch! It was like someone had punched me in the chest, leaving tender bruises under the mini-mounds that had recently begun forming on my 12-year-old body.

You’d think that breasts might have been on my radar well before that tween moment, considering I was just three years old when breast cancer killed my 39-year-old mother. But it had never even crossed my mind that there was a body part to blame for ripping her out of my life and the lives of my ten brothers and sisters.

Until I turned 30.

That’s when I discovered that the perky twins (no, not identical) that had scored me more than a few free drinks in my 20’s would possibly force me to share the same fate as my mother.

The call came from my sister Terri, who informed me that she, along with two of our sisters, had undergone a new blood test that could detect BRCA, a genetic mutation known to significantly increase the risk of breast and ovarian cancer. Only Terri had tested positive. I kind of half-listened to the rest of the conversation, distracted by my own thoughts. She’s 14 years older than I am, there’s no reason I need to really be concerned. Besides, Terri is a worrier… this is the woman who used to hide from thunderstorms. I’m sure it’s fine.

She had a plan. She was already fighting with her insurance company to undergo prophylactic surgery. Prophy-what? I didn’t even know what that word meant. The mother of five was determined to kill the risk of cancer before cancer killed her by having a preventative double mastectomy. I couldn’t help but question her decision to do something so drastic without even having a cancer diagnosis, but I also don’t know what it was like to be 17 and watch my mother die.

Like life has a funny way of doing, time (and the crow I would eventually eat) flew by.

Flash forward a few years. I was 34, married, and had just given birth to our second son. It was time to find out if I was, in fact, at risk. I stood in the genetic counselor’s office trying to comfort a screaming infant while listen to the doctor explain that a positive result would mean an 87 percent lifetime risk of breast cancer, along with a 50 percent risk of ovarian cancer.

As the needle entered my arm and filled the tube with my blood, I couldn’t help but think about what my sister had done and how against it I had been. It’s funny how much becoming a mother had opened my mind. But it was testing positive that totally changed it.

What felt like overnight, I began to hate my breasts — my disgusting, stupid, over-sized breasts. My formerly-perky secret weapons not only resembled tube socks filled with sand, courtesy of breastfeeding two kids in less than a year, but now they were also ticking time bombs, threatening to change, if not end, the incredible life I had built with my husband and children.

But there was no way in hell I was going to let my breasts do to my kids what my mom’s breasts did to me.

I began to research my options and scheduled consultations with surgeons. I wasn’t 100 percent sold on the idea of prophylactic surgery, but I knew I at least needed to be informed. I’m glad I did, because two months after finding out I carried the genetic mutation, they found the lump.

Oh my God, I have cancer? Are you kidding me right now?

A trip to the breast surgeon found that the lump was too deep to do a needle biopsy. Surgery was required to find out whether I had cancer or not. I knew what had to be done. Even if the tumor weren’t malignant, the odds were that someday, it would be. And if the biopsy did, in fact, determine I had cancer, I would have a double mastectomy anyway.

So I went for it.

I had two weeks to get our affairs in order, arrange childcare and reflect on my very scary circumstances. Anyone looking at my life from the outside — or who happened to be driving next to me on the road — would have thought they were watching a badly acted soap opera, with me playing the role of the melodramatic mother. One minute, I’d have it all together… the next, I’d be sobbing and shaking like Julia Roberts in Steel Magnolias. I drowned my sorrows in ridiculous amounts of sappy lost love songs (see: James Blunt) as I pictured myself saying goodbye to my husband and kids in an emotional, dramatic scene (think Debra Winger in Terms of Endearment).

But as my surgery date loomed near, being the “sick” girl was getting to me, especially since we didn’t even know if I had cancer or not. While I appreciated the outpouring of love and support from my family, friends and even acquaintances, all the attention for Jackie “the cancer patient” made me extremely uncomfortable.

So before anyone else tried to turn my story into a Lifetime movie, I needed to take on the role of director and surround myself with an outstanding cast of characters.

One of the first on the call sheet were Tiff and Tara (aka Clairee and Ouiser), my girlfriends who possess something most women don’t — a rare ability to find the funny in the awkward and turn a serious moment into a prime opportunity for inappropriate humor. Their role: to play hooky from work on the day of my double mastectomy and distract my husband as I endured seven hours of cutting, scooping, filling and sewing. Tiff and Tara took their job very seriously. They even arrived for a rehearsal dinner (yes, we had chicken breasts) with a double Bundt cake in hand — a dessert that coincidentally resembled a pair of perky, sugar-filled breasts. (I really don’t know that I’ve ever laughed as hard as I did that night.)

Two days later, as I awoke from surgery on that sunny March morning in 2006, the doctor informed me that I did not, in fact, have cancer.

Wait, WHAT??

Holy crap! Did I just make a giant mistake? Fortunately (or unfortunately) for me, I didn’t have much time to contemplate my hasty decision because I suddenly found myself the focal point in a debate between nurses, both confused as to how they would get me from the gurney I was transported in and into the bed where I’d spend the next four days.

I wondered if it was just the drugs or if this bizarre moment was actually happening. Is there a hidden camera in here? Am I on a very special episode of Punk’d? (One of the nurses did sort of resemble Ashton Kutcher.) Not only were they at a loss over how to move my 160-pound body (don’t judge, I just had a baby) from one bed to another, they actually called in a third person to consult.

“What the hell is the problem?” I heard someone say. “This isn’t exactly the Pythagorean theorem, people.”

I don’t think I realized the biting sarcasm was coming from my own mouth until I heard a stifled laugh coming from the other side of the room — courtesy of my husband. He was smiling from ear to ear knowing that I was going to be okay. His wife was back, baby.

The nurses did eventually figure out how to transport me to my bed (see: awkwardly toss) and I was released from the hospital later that week. As I packed up my belongings, my surgeon came in to give me some news. “You dodged a bullet, honey,” she said. It seems the pathology came back showing precancerous cells growing in my other breast (the one without the lump). What did that mean? “The best guess,” she said. “You were one to five years away from a full breast cancer diagnosis, complete with chemo and/or radiation.”

I sat quietly for a moment, feeling validated by my decision. Wow, I totally did the right thing. I grabbed the bull by the horns and showed it who’s boss. I was sore, un-showered and desperate to climb into my own bed, but the news made me feel like a freakin’ warrior.

That day was a total game changer for me. Not only was it confirmation that I needed to continue to be a proactive advocate for my own health, but that moment also served as the catalyst for a huge shift in the way I looked at my body. For a girl with some serious body image issues (my weight fluctuates more than the stock market), the days of hating my body for everything it isn’t were over.

Don’t get me wrong. It wasn’t all rainbows and unicorns. Recovery, both physically and emotionally, was tough and, while I may joke, I wondered if I could really get through it. The hard, immovable replacements implanted in my body felt more like an NFL player’s shoulder pads than the soft, squishy breasts I used to wear. There were times I would be overcome with so much frustration and anxiety I’d want to rip the implants out with my bare hands. But with time, some very helpful meds and a sense of humor, I have been able to let go of what was, appreciate the present and look to the future, knowing I did everything I could. And while my face may have a few more wrinkles (and my butt a few more dimples), I feel more comfortable in my own skin than ever before, something I don’t know I could have ever achieved without having my breasts removed.

I remember being asked shortly after my double mastectomy, “How does it feel losing everything that makes you a woman?” Funny, I didn’t know I had.

My breasts didn’t define me before they were removed. My breasts don’t define me now. But every scar and imperfection does serve as a daily reminder of the strong, unstoppable force I am; ready, willing and able to do whatever it takes for the people I love. If that doesn’t make me a woman, I don’t know what does.