When you’re 21, the last words you expect to hear are “you have cancer.” But, that was exactly the news I received in 1976 after a routine trip to my college infirmary landed me in Boston Children’s Hospital with Hodgkin lymphoma.
Thanks to new treatments developed through clinical trials and a summer undergoing radiation therapy at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC), I was deemed cancer-free. While I wanted to say, “I beat it,” I knew the five-year mark was a big milestone for Hodgkin lymphoma patients, and I was nervous until I reached that goal. How much did I want to start if I wouldn’t be able to finish it?
Thankfully, I was healthy at five years and went on to have five beautiful children – a miracle we weren’t sure would be possible given my treatment. Once my children were in the picture, my desire to stay healthy was stronger than ever. Every year, I visited the Jimmy Fund Clinic and the David B. Perini, Jr. Quality of Life Clinic [for survivors of childhood cancer] to review my risks and complete necessary screenings. Outside of Dana-Farber, I coordinated my care with my primary care physician and remained active. This diligence led to a diagnosis of restrictive cardiomyopathy in 2007, a difficult experience that underlined the importance of advocating for my own health.
Through the Perini Clinic, I also participated in a breast cancer screening study due to my increased risk as a lymphoma survivor. I knew I wouldn’t have survived lymphoma without others participating in studies like this, so I was happy to participate. Thankfully, these screenings picked up a tumor very early on, which, by December 2009, was removed with a bilateral mastectomy.
My children, by now young adults themselves, were fantastic throughout my diagnosis. It’s never easy to worry your kids, but mine never wavered in their support. They rallied behind me and even proposed doing a breast cancer walk the following spring. With that, the “Ta-Ta Sisterhood” was born.
Our first Avon Walk for Breast Cancer was May 2010, just five months after my surgery. I could barely walk two miles that spring, but with my team around me the miles quickly went by, until I reached 13 on the first day of the walk. My kids’ dedication to just being there for me did – and still does – so much for my recovery. This spring, we completed our fifth walk and have raised more than $80,000 to end breast cancer. Although my kids are now launching their own lives, they still take the time to fundraise and walk, which constantly inspires me and shows just how much of a responsibility I have to them to stay healthy.
Since I continue to benefit so much from screenings as a survivor, I want to ensure those who don’t have easy access to oncology care have the same screening information that helped save my life. I’m working with the Adult Survivorship Program at DF/BWCC to create a Web-based resource to inform lymphoma survivors and their physicians about personalized risks as a result of their cancer and its treatment. Hopefully this information will help others self-advocate and feel a sense of control over a situation that’s not that controllable.
Through the years, I’ve learned I’m never going to fulfill my 21-year-old self’s wish of “beating” cancer. And that’s OK. Cancer is going to take up a certain amount of space in my journey, but I’m not going to build my life around it. My kids, my friends, my family – they are my life, and I intend to stick it out for the long run.