Cancer Advocate Spotlight: Jo-Ellen De Luca
Jo-Ellen De Luca
7-year Rectal Cancer Survivor
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I learned early in life how to cope with hospitals and work with doctors. I spent nearly two years of my life in hospitals after being diagnosed with Crohn’s disease at the age of 24. I was lucky enough to have a doctor who showed me how to use the hospital’s medical library, and encouraged me to educate myself. A diagnosis of Crohn’s disease and colitis was unusual in the 1970’s and support groups were practically unheard of. By reading and researching, I came prepared with a list of questions before each doctor’s visit and each procedure. I was an empowered patient and a self-advocate before those terms really even existed.
My doctor invited me to become a part of the initial board for the Crohn’s and Colitis Foundation of Boston, the first chapter in Greater Boston where I lived. A school teacher by day, I volunteered evenings and weekends and eventually founded the first hotline in Boston for patients going through similar—or even worse — experiences. Soon it was staffed around the clock, and the typical population of 18-24 year-olds diagnosed with this awful, painful disease finally had a place to turn. It was a good feeling that led me to start additional CCFA support groups in Boston’s North Shore.
In 2001, I had been living in South Carolina for nearly 10 years and thought I might have had a recurrence of Crohn’s so I went in for a routine a colonoscopy where, during my procedure, my doctor discovered a tumor. Just like that I learned I had stage IIB rectal cancer. Decades after my first experience with Crohn’s, I came to find there was still little help out there — no brochures or information provided by the doctor and without computer access I was still sort of living in the Dark Ages. When I picked up my prescription one day, I saw a Katie Couric colorectal cancer educational brochure in the pharmacy and was thrilled! I wrote to her and asked for more brochures to hand out in my community. Within a year’s time I had handed out more than 5,000 brochures with the help of students from campuses at various South Carolina universities, and then, in what seemed like no time I had found other survivor-advocates and co-chaired the first statewide coalition, continuing my mission!
The principal investigator at my local cancer center called and asked to me to create a support group and volunteer. My work there in the Clinical Research Department led me to get involved with their Clinical Research Department and the North Central Cancer Treatment Group (NCCTG),one of the national Cooperative Group sponsored by the National Cancer Institute consisting of a network of cancer specialists and survivors bringing clinical trials with promising new cancer therapies to communities where patients live. Three times a year I travel with about 25 other survivor-advocates to meet & listen as doctors and clinical researchers present, visit labs, and learn firsthand how clinical trials work. I am patient advocate to several subcommittees and mentor for Pam Moffitt, a stage IV lung cancer survivor and fellow NCCS Super Advocate! I have been Pam’s mentor now for five years now and we travel together to the Mayo Clinic campus. It was Pam Moffitt who had already started working with NCCS as a Super Advocate who nominated me for the group! I have also participated as a patient consultant on FDA panels, traveling to Washington, D.C. as often as once or twice a month.
In South Carolina, I am the founder of “Get Checked!” the largest colon cancer support group and a 501 C 3 nonprofit, Colon Cancer Solutions (www.gicancersolutions.org). We inform the public of the effects of having colon cancer and raise awareness of the many accessible methods of prevention. It’s survivorship through mutual support. Just like me, we are both survivors and caregivers.
When I think how cancer has affected my life (and the my husband’s, who was diagnosed with stage III colon cancer five years ago), the many physical and emotional issues I found as a result of my cancer diagnosis are quickly put aside in favor of the many blessings and opportunities I have also experienced: many friends, interesting things to do and a feeling of accomplishment are among them. This has been a new adventurous chapter in my life and I am proud of my advocacy work.
