By Bobbie Shay Lee, MSW, Special to Everyday Health
I do not share my story for empathy or pity; there are hundreds of survivor stories as relevant, unfortunate, and empowering as mine. Instead I put myself out there with the hope that you will be moved to join my fight, my journey, and my demand for accountability and transparency from corporations that sell pink products for breast cancer month.
In November of 1998, while cheerleading for the NFL at Raymond James Stadium in Tampa, Fla., I abruptly walked off the field and quit my gig in the middle of the game. It was 102 degrees that day and the constricting layers I wore — bare midriff, long white puffy sleeves — felt more like a furnace than a sassy cheering uniform.
I did not plan my exit, but after enduring months of treatment for breast cancer at the age of 25, I had no other choice. I had nothing left in me. At my initial diagnosis, I’d stubbornly refused to give up on the NFL dream, and swore I’d continue to perform as a third-year veteran on the squad. I didn’t miss a game, even though I was undergoing daily radiation therapy.
But my colleagues did not offer the support I had expected they would. The ignorance and indifference I endured, from both male and females franchise officials, isolated and astounded me.
So, on that sweltering day, leaving was all I could do to save face — and my deteriorating health. And after I put down my pom-poms, I understood my divine purpose.
14 Surgeries in 16 Years
I’d just been through 20 months of breast cancer treatment. At that time, the Women’s Health Care and Cancer Rights Act, which requires insurance companies cover breast reconstruction, had not yet passed. Because of this, my initial request for a mastectomy with reconstruction was challenged by physicians. I finally did receive a bilateral double mastectomy in 1999, shortly after the bill passed. But unfortunately, the rounds of radiation I’d endured to treat the breast cancer had resulted in striations to the muscles of my chest, which continued to cause complications, resulting in 14 surgeries over the next 16 years.
I moved on from breast cancer and the NFL and pushed forward with my life — in a big way.
My long course of treatment inspired me to start a non-profit organization focused on the importance of breast self-examination. I earned a Master’s degree (with honors) from Florida State University, and unintentionally secured a job as one of the state’s youngest female lobbyists at the time. I spent the early years of my lobbying career working toward my dream of becoming a federal lobbyist focused on women’s health. I made it to Washington, D.C., in 2002, and became a spokesperson for a national nonprofit. At the height of the breast cancer awareness movement, requests for public speaking engagements came flooding in. And against all medical odds and scientific explanations, I also became a mom.
In Need of Breast Surgery, But Uninsured
I left my political career to dedicate my life to motherhood and my nonprofit work, and had made a life for myself I’d always dreamed of. But in August of 2010, while climbing a ladder at work I felt a strange pull, and found I had seriously injured my chest wall, severely damaging my reconstructed breasts.
Uninsured for years due to my pre-existing condition, I turned immediately to the breast cancer community and agencies that once relied on my fundraising efforts, public advocacy, and resources for assistance. In spite of the direct support I had provided so many years, no one offered their assistance as I struggled to find a doctor to treat me.
I was forced to pay $7,000 in cash in advance for what was described as an “urgent surgery.” The physician who took my case did not show up the morning of the operation because his office had not received the final payment before 7 a.m., the scheduled time for my surgery. Using the phone at my pre-op bedside, I arranged for my mother to immediately pay the remaining balance to the doctors’ office. We sat in silence awaiting the doctor, anesthesiologist, nurse, and surgery center manager; I held my breath in disbelief. I will never forget how I felt that day.
After the surgery, I lay in bed recovering from the repair to my torn chest wall, my pectoral muscles no longer present. I clicked through the channels on the television’s remote control. It was October, National Breast Cancer Awareness Month, and also the middle of football season. The game was showing on nearly every network, and as is typical for each October’s fundraising efforts, the All-American game looked as if it were drowning in Pepto-Bismol. People in the stands were dressed in pink, the players wore pink mouth-guards, pink cleats, pink socks, pink wristbands. The cheerleaders held pink pom-poms.
What a farce, I thought to myself. I knew the pink propaganda didn’t really aid the cause. A corporation may claim that a sizable portion of net proceeds from pink products go to benefit breast cancer research, but increasingly, it’s become more evident that this isn’t the case. A report released last week by Business Insider, found the NFL donates only 8 percent of sales to breast cancer research.
Lying in my hospital bed with limited financial resources, I still ached from those feelings of abandonment. I found myself reminiscing about my tenure with the NFL as the color pink splashed across the television screen. I had always suspected that companies used pink campaigns to promote retail sales, but for the first time ever I felt sad and exploited.
As a consumer you hold the power to make educated decisions about the brands you support. I started a petition to demand transparency about charitable donations by retail companies, as well as urge Congress to regulate pink ribbon promotion. For more information on how to join the initiative visit www.under-reconstruction.org