Jackie.Angelina

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. 😉

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.

RELATED POSTS:

Miss Tectomy: How Losing My Breasts Made Me Feel Beautiful

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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.

Tragedy that Changed My Life: Part 3

Part three of an 8-part series that shares this summer’s experience and the impact it’s made on the rest of my life.

With just minutes to spare before takeoff, and sweat pouring from my face, I ran through the airport, sailing over hurdles like Bruce Jenner in the ’70s (you know, before all that plastic surgery and Kardashian ridiculousness). My goal was to get to the gate and keep them from closing the door while Jeff got the rest of our belongings through security.

Panting, I arrived at the desk to tell them that we’d just be another minute and beg them to hold off. Thinking I could distract her until Jeff arrived, I asked her if there were any upgrades — knowing full well we weren’t even considering paying the extra money. She asked for my ticket, looked at our seats and said, “Oh, you’re not even sitting together.”

And that was the moment it all came crashing down.

Suddenly, the emotions and stress that had shut me down over the past 24 hours came to a head. Tears began to stream down my face, with no sign of stopping. All of a sudden I was feeling it all and it was becoming all too clear that our family’s lives would never, ever be the same. I feel kind of bad for that woman at the counter that morning. As I turned away and mumbled, “thank you,” I began to cry that ugly cry normally reserved for behind closed doors. She had no idea what to do with me.

Jeff finally ran up, holding all of our bags and, if I remember correctly, carrying his shoes because he didn’t want to miss the flight by taking the time to put them on. “We’re not sitting together,” I sobbed as he held me there in the middle of the busy airport.

I pulled myself together long enough to hand my ticket to the agent at the gate. She turned to Jeff and asked if I would be okay. He just nodded, mostly to be polite, because I’m not sure he believed I ever would. As we walked up the jet way, I heard our name being called by an agent behind us. “Take these seats,” she said, as she handed us tickets with exit row seats next to each other.

I don’t remember much about that flight, just the wave of emotions that continued to hit at 30,000 feet. I swear at one point, a baby even stared me down, wondering how to get that silly grownup to stop crying already.

Matt and Kristen

As we touched down in Boston, I thought about my little brother, Matt, who would be there to pick us up and bring us directly to my sister’s house. Matt, who has just celebrated his 29th birthday less than a week before, was not only 30-year-old Kristen’s uncle, but a close friend and confidante. They had shared a relationship unlike the rest of us, attending the same parties as teenagers, discovering themselves through parallel experiences in their 20’s and undergoing lots of personal and professional growth — always supporting each other (with a similar dark sense of humor) along the way.

I spotted Matt standing in baggage claim, looking almost like a lost little boy in the mall. My heart broke as I walked toward him and embraced my little brother, no words were needed to communicate our loss. As we took a breath and headed out to the car, the mom in me pushed the grieving aunt and sister out of the way and called home to see how Lucy’s ear was feeling. It was the first opportunity to get in touch with my mother in law since leaving before sunrise and I had a feeling I’d be giving her directions to the doctor’s office and pharmacy in order to get Lucy’s ear infection taken care of.

As expected, Lucy was uncomfortable and cranky, her ear still hurting like the night before. I said I would call the doctor and call right back to let her know the game plan. I dialed the doctor’s after hours voice mail (at this point, it was Saturday at noon on the west coast) and left a message. Within minutes, Dr. H called right back and I told him the situation. Understanding Lucy needed some relief yet we were helpless from across the country with the kids home with Grandma, our pediatrician offered something I had never heard of, at least after the year 1950 — a house call. 20 minutes later, not only was he was at our house examining Lucy, but also called in a prescription and gave Grandma directions to the pharmacy. I couldn’t believe it. With all that was happening back east, I was amazed and so grateful that my daughter was being cared for and I could focus my attention where it needed to be.

As we continued the drive to my sister’s house, around 30 miles north of Boston, my little brother filled us in on the last 24 hours for the rest of the family. Final funeral arrangements hadn’t yet been made, but one important detail had been discussed and determined.

“She’s going to be buried with your mom,” Matt said.

A little back story: My mom, mother of 11 children died back in 1974. With nine kids between us, I was the youngest at three years old and my sister Maureen (Kristen’s mom) was the oldest at 18. At the time my mom was buried, I didn’t realize it but four plots were purchased. Learning this later, it always made sense that my dad would eventually be there, as well as Mary, who he married the following year. But I don’t think I ever knew or thought about a fourth in that space — not really something a kid wants to think about, right? Please, it was hard enough to see my own dad’s name, birth date and a big dash (like we were just waiting for that second date to be etched onto the stone) throughout my childhood. I certainly couldn’t wrap my head around anything more than that.

But, for some reason, hearing that Kristen would be buried alongside my mom didn’t even surprise me. In fact, it was the first thing since discovering the news of her death, that felt completely right. I was about to experience one of the most difficult weeks of my entire 40 years, but at the same time, immediately felt like I was simultaneously being given a once in a lifetime opportunity to reach a new level of healing by attending, for the very first time, my mom’s funeral. I thought, what an unbelievable gift we would be given, one we could never have received without Kristen and the love and courage of my sister and my dad.

But I had no idea how life changing that gift would actually be.

To be continued…