While I was away on business this week, my Facebook and inbox were flooded with friends telling me about the news. Angelina Jolie’s news that is. You’re probably asking yourself, why would people feel compelled to tell you about a movie stars media attention. Well, the story goes like this…..
In March of 2005, my phone rang and it was my mother on the other end of the line. She had tears in her voice as she told me that she was no longer in remission and that her breast cancer had metastasized to her liver and brain. 2 years earlier they found a large lump and she opted to have a radical bilateral mastectomy in hopes of stopping the cancer in it’s tracks. This wasn’t her first rodeo, it was her second bout in the ring with breast cancer and this phone call made her third! She tried to assure me that it was all going to be ok, but it was loud and clear in her voice that this was going to be a hard fight that she might not win. I threw together some clothes and jumped in the car for the 5 hour drive to be by her side. There was nowhere I’d rather be then supporting her personally. We spent 2 weeks together chatting, watching soaps and just being while she laid on the couch feeling awful from the chemo drugs and the monster inside. I knew I couldn’t stay forever as I had 2 small children and a husband at home eagerly awaiting my return.
I spent a lot of time reflecting on life on that 5 hour drive home. How could a woman be dealt such a horrible hand. 3 diagnosis’ of breast cancer? My Mom was no stranger to breast cancer – her mother battled the disease on two different occasions as well and came out the winner (she’s 93 and doing great). As soon as I got back home I decided I needed to speak to my doctor about my own health. I thought she was my advocate, but her views differed greatly from my own. I sought out a new woman’s health doctor and made an appointment. That day changed my life forever. As I sat in her little exam room and told her my story, her eyes filled with tears. She advised me to see the High Risk Breast Cancer clinic for more in-depth advice and got me an appointment the very next day. I was given a page-full of ideas on how to approach this new found risk and was urged to speak to my mother about having genetic testing. I had never really heard of it, but was willing to do whatever. Thankfully, so was my Mom. She started the ball rolling and we anxiously awaited the test results to come back. When they arrived, our lives changes forever. She was positive for the BRCA2 gene mutation. A group of less agressive breast cancer strains, but still very serious. My new-found advocates urged to keep the testing going and asked that my grandmother be next. She obliged instantly. Her result, positive for the exact mutation. Next up was me and yep, you guessed it – positive. My sister was last and in keeping with the Scarlet Letter (the nickname I gave the mail from Myriad) she was positive too.
Back to the clinic I went with 3 copies of this report in my hand and asking a zillion questions like “when will it be my turn”, “what can I do”, “I don’t want to be a sitting duck”. In 2005, prophylactic bilateral mastectomies were not commonplace. Oh, prophylactic means “preventing” or not medically necessary. I hit the interwebs and spent FAR too many hours looking at options. I don’t know if I even slept for several months, I just recall my nose being pressed to the computer monitor as I looked at stats on Tamoxifen and pictures of mastectomy scars and printed out page after page of medical reports on breast cancer. It was all a lot to take in, but a process I needed to go through to make the biggest decision of my life.
At the end of 2005 I told my doctor that I was ready. Ready to be the one calling the shots – not that nasty breast cancer gene, and that I wanted to have a prophylactic bilateral mastectomy, TRAM flap reconstruction and a full hysterectomy. Basically all parts that made me a woman needed to go. We started the ball rolling with picking surgeons and I spent the next 6 months talking about the big day with plastic surgeons, breast surgeons and OB/GYN’s until the team was assembled (my 3 Amigos as I liked to call them). I had to go through genetic counseling to make sure I was ready for what was about to happen to me. It was definitely no light matter and was taken very seriously.
May 6, 2006 I showed up at the hospital very early in the morning with my husband, Mom, Dad and kids in tow. They wheeled me away after a lot of kisses and tears for an 11 hour surgical journey that would take my risk of getting breast cancer from 90+% to less than 5%. I spent several days in the hospital after that day with tubes and drains and a morphine button that didn’t always seem to work. Ok, it did, but I was in so much pain that the 8 minute intervals between button pushes felt like years. I spent the next couple months unable to stand up straight and shuffling along as if I were a 100 year old lady. It was no easy ride and I wouldn’t wish the pain on my worst enemy. All the while I was dealing with this new body of mine, my mom was still battling her demon. She was so incredibly strong for me, encouraging me and taking care of me when she really should’ve been taking care of herself.
7 years have gone by since that 11 hour surgery. I know that this new body does not make me invincible and I still worry that breast cancer may cross my lips one day, but waking up every day and knowing that I did what I felt was right for me and my health, gives me hope. Hope that advances in medicine to be preventive may give me the opportunity to tell my grand children some day that I managed to live my life without ever having breast cancer.
I applaud Angelina Jolie for coming forward and talking about her decision. It’s not easy to do. After my surgery I would tell anyone with ears what I did which was usually met with the glazed over, deer in the headlights look followed by an awkward look down at my breasts. It’s information that most people can’t wrap their minds around. “You did what?” So hearing that a high profile celebrity with a far reaching audience has done the same and is speaking openly about it has brought me to this post (and a lot of urging from Heidi the past 2 days). I felt that it was time to put it out there – when the media is filled with the uncomfortable information of choosing to have your breasts removed, in hopes that the deer in the headlights look has diminished a little and eyes are wide open to take it all in and absorb it and embrace it.
In closing – follow your heart. There are some things in life that you may feel compelled to do that may not be cool, mainstream, or thought to be too radical, but if you believe with all your heart that it’s right for you, for your health and longevity, you need to listen carefully. It knows the way! Always.
In January 2007 my sister was diagnosed with breast cancer and elected to have a prophylactic bilateral mastectomy and has been healthy since. On February 17th, 2007 my beloved mother lost her 13 year battle with breast cancer but gave our family a gift of genetic information which will help our children and their children make informed choices about their own health and well being. She is missed everyday but her strength and beauty surrounds us always. My grandmother is 93 and a 40 year breast cancer survivor. She’s a true testament to health, courage and strength and I will be blessed to be half the woman she is. My daughter and son will have the opportunity to have genetic testing at ages 16, if they choose. Genetic testing is a choice that is not for everyone and I respect whatever they decide to do whole-heartedly.
Thank you for reading.
xo – heather