Diagnosed with Hodgkin’s lymphoma at the age of 25 in 2003, she now serves on the N.C. Cancer Hospital Patient and Family Advisory Board and the Action Committee of Pediatric Hematology/Oncology as well as volunteers with Stupid Cancer, a national support organization for young adults with cancer.
The Florida native explains, “Young adults are a diverse group of patients. There’s a difference between being diagnosed at 17 and a half and receiving treatment in the pediatric department or being diagnosed at age 18 after starting college only to have to move back home with your parents, in turn, losing your social circle at school. Or you're 24 and you've graduated from college. You're starting your career, dating again. Do you tell your date about your illness? Or you're the 30-something who is married and wondering what to do about fertility concerns. The needs of an 18-39 year old can be very different from those of a pediatric or geriatric patient."
Her first project for the Advisory Board is organizing a survivorship after treatment resource guide. “I get a lot of calls from family members or friends who say, ‘I have a friend or a daughter who has cancer and … .’ I wanted to know what was out there. People are hungry for this information and for resources. So the challenge is how do we make sure everyone knows about the great resources we have at UNC and through organizations such as Stupid Cancer?”
Amber knows the issues well. She was three years out of Northwestern State University of Louisiana, starting her career in sales and marketing and volunteering as a coach for the Leukemia & Lymphoma Society’s Team in Training, when she was diagnosed. “It was very coincidental that I was diagnosed with lymphoma,” she says.
“I had been sick for so long,” she recalls, enduring night sweats and severe fatigue, sometimes sleeping for 20 hours at a time. “Then masses began to grow starting on my right side, then growing up and over. I was having difficulty breathing and talking. My closest friend had had non-Hodgkin’s a few years before, and our symptoms were similar, so I suspected it might be cancer.
“Being a young adult facing a cancer diagnosis poses special challenges. You’re trying to present yourself to your medical team as an independent adult at a time when you could really use an advocate to assist you in navigating your cancer experience, but might not feel you can ask for help because it might be perceived as childish. You want to be taken seriously, so you may not always seek the support you need.”
She underwent treatment and returned to work one week after completing therapy. “The thing I struggled with the most was feeling so unproductive when I was sick. I measured my productivity by errands run and workdays completed, at a time when I couldn’t finish a chapter in a book or even a movie. I went back to work very soon after finishing therapy. I would advise patients to give themselves adequate time to heal.”
Now 10 years out from her diagnosis, Amber is fully engaged in her volunteer advocacy, her work and living life fully. “To describe myself at this point in my life? I’d borrow the tagline from Stupid Cancer: ‘Get Busy Living.’”