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Long Time Cancer Survivor on the Power of Finding Her Cancer Tribe

Tuesday, March 31, 2020
Erin Cummings[NCSD guest blog post by Erin Cummings]

I have been a cancer survivor for most of my life. I am 62 years old.

Diagnosed with Stage IV Hodgkin's Lymphoma in 1972, when I was just fifteen years old, my chances of making it to "sweet sixteen" were not very good. I had two recurrences within the first year. Having cancer back then was lonely as hell. People thought you could get cancer just by touching someone. I counted my friends on one hand.

The treatment for cancer in the early 70's was very different than it is today. The protocol for treating cancer when I was a teenager was very aggressive, without much thought about the long-term side effects. They just wanted to give us a fighting chance.

My doctors threw everything at me, hoping that something would stick. It reminds me of a Jerry Seinfeld line, "Just figure out what will kill me, then back it off a little." It was hell. But it worked. I not only made it to my sixteenth birthday, I squeezed the life out of every second of my high school career. I truly lived each day as though it were my last.

Forty-seven years later, I'm still at it, surviving well past anyone's expectations and despite one challenge after another. It turns out that the kind of cancer therapy I received had some long-term consequences. Earlier forms of radiation and some chemotherapies can cause "late effects" – serious, sometimes deadly health problems. And I can check off most of them. All that radiation aimed at my scrawny chest took a toll. I've had open-heart surgery, thyroid cancer, melanoma, pulmonary disease, vocal cord surgery, and prophylactic bilateral mastectomies. I have a fantastic collection of scars and more than a few "spare parts." Through it all, I never lost hope, I never lost my faith, and I kept on going. Literally.

In 1982, ten years after my diagnosis, I ran the Boston Marathon. I saw my family and my future husband at the twenty-mile mark, simultaneously crying and cheering, unable to believe what they were seeing. I thought of all the doctors, nurses, and technicians who had cared for me when I was sick and wished like hell that they could know that I had made it to the finish line.

In the past four decades, I've completed six more marathons. Five of those were in New York City, raising over $100 thousand for Pediatric Cancer Research at Memorial Sloan-Kettering Cancer Center, where I was treated. I trained in between procedures and surgeries, going to school and raising a family, and living through the unpredictable, roller-coaster life of being a cancer survivor. Every time that I set my mind and my heart to doing just one more marathon, even if I had to walk it, I was reassuring myself that my battered body was still resilient, still capable, still "me".

I didn't meet another adult survivor of Hodgkin's until I was 50 years old. I spent years wondering if there was anyone else "out there". I knew that statistically; it was not very likely. I knew lots of cancer survivors, but none who shared my history. Meeting Donna happened totally by chance. She died shortly after I met her, but for a brief time, I realized I was really and truly not alone. I made it my mission to do whatever I could to find other survivors, and to make sure that they knew there were others just like them – strong, resilient, battle-scarred warriors who had defied all the odds and were still hanging in there.

In 2016, I co-founded a non-profit organization, Hodgkin's International. Our primary goal is to support long-term survivors who are suffering with late effects. Far too many survivors have NO idea that they are at risk, and many of their medical providers have no idea either. We can change that. Hodgkin's International is holding a gathering and conference in June of 2020 in Boston. Many of us will be meeting in person for the first time, and attendees are coming from all over the world. It is a dream coming true.

Erin Cummings is a 47-year Hodgkin’s lymphoma and thyroid cancer survivor, speaker, graduate of Social Work, 7-time marathoner, and a married mother of four adopted children. After a life of serious long-term side effects, complications, and treatments, she founded Hodgkin’s International, an organization that supports and empowers Hodgkin’s lymphoma survivors. Follower her on Twitter at @HodgkinsIntl and on Facebook at @hodgkinsurvivors. Visit her website at hodgkinsinternational.org