What the dermatologist thought was dry, itchy patches of eczema turned out to be worse. Much worse.
A practicing nurse, Donna was able to pull her own biopsy results up and recalls thinking that they “didn’t sound like anything good.” The next day, her dermatologist called and made her worries a reality. “Hearing him say ‘you have cancer’ was a punch in the gut. I’d always been on the other side of the treatment table and I was emotionally unprepared.”
Donna’s diagnosis of mycosis fungoides, a type of cutaneous T-cell lymphoma (CTCL), was so rare the oncologist pulled a large book from the shelf and told her they’d read about it together. (There are only 3.6 cases per million people per year.)
Treatments started off with steroidal creams and topical chemotherapy and progressing to ultraviolet treatments in a light box. “But mycosis fungoides can become aggressive without much notice,” Donna says. “I ended up with every treatment under the sun, culminating with a stem cell transplant.” Her husband was a rock, helping her through treatments, always the healthy one.
Today, she’s in longterm remission and grateful for the monitoring she receives every six months.
“I am more present, more aware, more mindful of a lot of things.” Donna has committed to journaling her gratitude, writing down beautiful moments of humanity and joy so she will never forget them. She notices birds flying, the simple pleasures of getting in her car. She revels in the meaningful delight of hugging her children.
During treatment, she was so weak that making a sandwich felt impossible and standing in front of the fridge required a stool because she was so fatigued. Friends from church jumped to her aid, cooking meals for several weeks. Like many survivors, the treatments that saved her life have also had a long-lasting impact.
Donna recalls her struggle adjusting to hair loss. “When the wind would below, I would hold my wig down. I had a wig consultant come to the house and was terrified – how would I put my glasses on?” She lost her eyebrows, but over the years, has learned to hand-draw them with such skill that strangers on the street have stopped her to compliment them. She channels that remembered pain to help patients she’s matched with today. “Those fears are just growing pains. I can offer hope.”
When asked about the best advice she’s gotten, Donna’s answer is swift, recalling her dermatologist telling her to “be hopeful because there are some brilliant people working every day to find a cure.” She’s paid that hope forward, encouraging the patients she mentors to always keep hope. “When you lose hope, you fall to pieces and you won’t have strength to fight.”
Diagnosed at a time when the internet was in its infancy and support groups were unavailable for cancers as infrequently diagnosed as her, Donna is committed to ensuring no one faces mycosis fungoides alone. She’s an active member of a closed Facebook group providing support to patients – “People will show pictures or share symptoms. In a strange way, it’s comforting.” She’s shared her story with the Cutaneous Lymphoma Foundation and has served as a Support Volunteer at Cancer Hope Network since 2013.
“I volunteer because when I was diagnosed, there was no one to talk to. Nobody knew anything, we were just there to hold each other up. I volunteer to give people what I didn’t have.”
Want to connect with a survivor volunteer like Donna? Call 877-HOPENET (877.467.3638) or click HERE. Want to use your personal experience as a survivor or caregiver to provide hope for others? Click HERE to learn more about becoming a volunteer.
By: Sarah Miretti Cassidy, CHN Director of External Affairs
- U.S. National Library of Medicine. (2021, May 17). Mycosis fungoides: MedlinePlus Genetics. MedlinePlus. https://medlineplus.gov/genetics/condition/mycosis-fungoides/.