Pink Ribbons… I remember the first words out of my mouth after the call from my GYN telling me I had Breast Cancer. “I can’t believe the rest of my life is going to be associated with a Pink Ribbon”. Wow! OK then the tears came. It wasn’t that I was anti Pink Ribbons. I donated regularly to Cancer and Breast Cancer charities. Pink though, REALLY? My favorite color has always been black (don’t say it) anyone who knows me, knows this. In the days to come I received all kinds of Pink things from people reaching out to support me. Trust me it was comforting and it really didn’t matter what the color. The gratitude I felt was humbling to say the least.
The first year during my treatment; the last day of my chemo fell on the day before the Revlon Walk. My oncology group belongs to a big team. They were geared up and telling me how I would walk next year. After 6 rounds of the TAC protocol once every 3 weeks…I was frizzle fried. Next year it is, because I will be sleeping through this year I thought. Come May of 2009 I am geared up and ready to go. My husband is having back problems so my brother from another mother, Robert, offered to walk with me. We met a woman who decided to walk even though she was still going through radiation. We stayed with her…I was happy for her and scared for her at the same moment. She did it. There were some moments I thought she would have to stop. But, she did it! My mind understands the good these walks do. I’m sure without them my prognosis would have been grim at stage 3b/c and BRACA2+. Yet it never felt right to me. I felt like I was at a parade honoring the dead and very little celebration of the thriving. Not from lack of trying…they try to celebrate survivors.
As a survivor I was searching for a way to give back. The walks obviously weren’t going to be my thing. So many people you don’t even know care so much, finding a way to give back seemed necessary, seemed like a responsibility as someone who had been helped by their efforts.
In April 2012 a contest and a realization of the value of my journey to others, gave me the understanding of how I was going to embrace the “Pink” and finally be able to give back. Major League Baseball has a contest that has been going on for the past 8 years. It is a Mother’s Day tribute honoring Survivor’s as Honorary Bat Girls, one for each team. If you watch baseball, It is the day the players wear pink and use pink bats. 2012 I was the lucky person picked to represent the Dodger’s in Los Angeles. This was my winning entry.
“As a survivor giving back feels like a responsibility, I share my story of going from what was thought to be early stage 2 to the reality of Stage 3B. Four years out and I am still here and cancer free. I share the scars, the side-affects, and that even if you have no family history is not a reason to pass on the BRACA Gene analysis. Four years out I tested positive for the BRACA2 Gene mutation. I just had a prophylactic right mastectomy. I have never veered away from the most aggressive choices. Left modified radical mastectomy with concurrent DIEP Flap reconstruction. TAC protocol Chemo (6 rounds), radiation 28 rounds, Tamoxifen, Hysterectomy, and now a right mastectomy with latissimus dorsi flap reconstruction. Great team of surgeons Dr. Maggie Dinome and Dr. Tracy Cordray. My children are actors and we have all participated in SU2C commercials (one while I was still having chemo). They volunteer for runway shows or anything connected with cancer awareness. My favorite thing, ask my children about my cancer, and they will tell you,” they forget I’m a cancer survivor.”..the best gift ever through this whole ordeal. Be your own self advocate and eliminate any threat so you can go back to living your life without the shadow of cancer in the wings”
I was contacted by the Dodger’s and they asked me if I would be willing to take interviews; “yes of course”. If I was an actual baseball fan; “yes of course” (they had no idea). I could bring my family and friends (joining me were my Husband Ken, Sons, Nico and Skylar, my friends, Marilyn and Chris, my son, Nico’s girlfriend Lauren and my reconstructive surgeon Dr. Tracy Cordray ) . Leading up to the game I asked all my Facebook friends, family and people I was in contact with to give me the names of their loved ones who had been touched by breast cancer. I made pink ribbons with each of those names on them to wear to the stadium. Having everyone feel like they were there and engaged in the event with me. Not till the morning of the game, after reading in the Northridge Patch; did I find out I was going to get to say “It’s time for Dodger Baseball”. I practiced all the way to the game, nervous I would say the wrong words. Something else I thought about was, don’t you dare waste your moment, say something meaningful. I was afraid I would be so overwhelmed by the excitement of the experience I wouldn’t remember what I wanted to say. Or I would be giggly and flustered, that is my MO. So I called my friend, Ali Simard, who is a PR guru. She was so kind and helped me navigate the media waters so I was able to get the message out that was important to me in that moment of excitement. When the headlines immerged I was so proud, “ Dodger’s Honorary Bat Girl Gives Message of Hope”! Hope for the newly diagnosed, hope for people in the midst of the fight. Admiration for the people who dedicate their lives to fighting this disease, all my wonderful Medical Professionals (Dr. Maggie Dinome, Dr. Tracy Cordray, Dr. Katherine Henick, Dr. Robert Wollman, Dr. Carol Nishikubo, Dr. Mousad Azizad, Caesar, Kathy, Mary…it truly takes a village of Medical professionals). Who, I will tell you, never take any credit for a survivors success and they should. I am often told you did this…In my mind; I did what I was told. I am here because of them. And the caregiver’s Ken, Nico, Skylar and my Mom. So I have always felt weird when people say they are honoring survivors. What for? Celebrate my life, but unless I actually do something to be honored for, I don’t get it.
In my effort to make this count I found a way to share the excitement I felt. The pink Baseball gear including that Pink Bat makes people smile. If you know me you are probably one of the people in my year-long awareness campaign that has had a picture taken with the bat. You can see them on my Facebook page; 2012 Honorary Bat Girl Lisa Nevolo-Lewis.
There is a second chapter to this story. Just before this wonderful experience, I had started a process with the organization Bright Pink (http://www.brightpink.org) to be a Pink Pal. It has been the single most gratifying thing I think I have ever done. It has given me much more then I have given. Pink Pals mentor women currently going through breast cancer treatment and or trying to decide how to deal with being high risk. I found that I was sort of an anomaly since I had had two different kinds of reconstructive surgeries, done at different times for different reasons. My diverse experiences gave me a lot of direct knowledge I could share. Each and every person fighting cancer has their own unique story. The common thread is the language we speak. One of my Pink Pals told me she never felt she could explain to even her husband what she was feeling or going through. But when she talked to me, I actually understood instantly and she no longer felt isolated by her journey. This one thing taught me the value of my story. This is why I share my experience any time with anyone who has an interest.
A contest changed my entire perspective on the Pink Ribbon. Something I now choose to embrace on my terms!
I attended the Dodgers Game this year – one year after my friend Lisa was honored and was thrilled that the Dodgers continue this tradition. Relieved that a year later I am not worried about my friend’s health and yet I thought of her throughout the game as this year’s honoree took the torch – another impressive woman who has started an advocacy program to remind women to check themselves. I thought of Lisa everytime I saw the players in pink sneakers and the other pink signifiers on the field. We all have people we know and love who have been stricken by cancer and hopefully many more each year who beat this thing. Lisa continues to be a hero to her many friends and colleagues who witness her self-less support.
Thank you for the kind words Ali…It’s mutual!