Nearly two decades ago, Ev McDowell went to her doctor for routine blood work. When test results showed low hemoglobin levels and something called ‘sticky cells,’ Ev got a bit worried, but thought: “At least it’s not cancer.”
Ev was referred to a hematologist, a doctor specializing in diseases related to blood. That’s when she learned that she did in fact have cancer — an incurable form called Multiple Myeloma — that causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.
“Initially, I was shocked. I hadn’t felt ill at all,” Ev says, remembering the feeling of learning she was indeed sick, severely, despite a lack of symptoms. Fortunately, Ev’s cancer was caught early, and she didn’t have the bone lesions or kidney damage characteristic of advanced myeloma. Within two weeks, Ev began chemotherapy. Four months later, she underwent a stem cell transplant.
At the time of her diagnosis in 2000, Ev was a mother of two young children — 9 and 11 years old — and worked part-time as a medical office administration assistant. She could neither have imagined such a diagnosis, nor devoting the next phase of her life to aggressive cancer treatment. It was overwhelming, and all she could do was put one foot in front of the other and keep moving forward.
“After my transplant, it hit me that I had an incurable cancer and may not live to see my children grow up,” Ev reflects. “Eventually my family and I adapted to what I like to call a ‘new normal.’ You try not to live too far into the future and live more for today.”
In 2000, the multiple myeloma survival rate was grim: a mere 3 to 5 years. Ev has been in remission for 18.
“You try not to live too far into the future and live more for today.”
Ev is lucky. Lucky she was diagnosed early, and lucky that her treatment was effective. But beyond luck, Ev played an active role in her recovery, determined to do anything she could to get healthy again. She pored over hospital library journals, independently learning all she could about myeloma and its treatment, information that empowered her along her journey of healing.
In 2001, while in remission, Ev met a woman named Carolyn Henry. Carolyn also had myeloma and wanted to talk to Ev about her transplant experience, since she would soon be undergoing the same treatment. At the time, Ev was back to work, but felt a deep desire to do more.
“I didn’t know if I wanted to change careers, or just volunteer. I just knew I wanted to help others.” After introducing Ev to the International Myeloma Foundation and the Multiple Myeloma Research Foundation, Carolyn proposed the idea of starting a myeloma support group, right in their own city of London, Ontario.
“When she said that, I immediately knew I wanted to help.”
Together, Ev and Carolyn founded the London and District Myeloma Support Group. The group provides information for patients and their caregivers to better understand the disease and treatment options, and provides emotional support to help patients and caregivers cope with the disease and its effects. The group also organizes an annual Walk of Champions to fundraise money for myeloma research. Last year, they raised over $90,000.
“Prior to starting the support group, we had meetings with the hematology social worker at the cancer clinic and the woman in charge of patient education, and they both warned us that it’s hard. You meet people, get involved, and then lose them. We’ve lost many members over the years. Too many. But we still wanted to do it.”
In 2011, Carolyn herself passed away, but not before she and Ev began to see the real effects of the support group on not only its members, but their caregivers as well.
“Members like the fact that they don’t feel alone. They meet other people and then get to know them. They start to feel like a family.” Ev explains that even some widows and widowers who lost a spouse to myeloma are still involved in the group, and attend meetings regularly.
“Proper support helps improve patients’ and their caregivers’ quality of life,” Ev says. “The people who come out to the support group meetings don’t feel as alone. They see people who’ve had myeloma for ten or more years and go, ‘wow, that could be me!’ They feel more optimistic about the future than they would have been.”
“Knowledge gives you hope.”
But Ev and the group have been careful to highlight that the group is not only for emotional support and connection — it’s for education, and patient advocacy. “Sometimes people hear the word ‘support’ and think ‘Oh, I don’t want to be in a support group.’ They don’t want to sit in a circle and talk about their problems.” As such, the London and District Myeloma Support Group website boldly reads “Knowledge is the best medicine” and the group frequently organizes expert speakers and myeloma awareness days, all of which are aimed at reducing fear of the unknown, and empowering patients to play an active role in their own care.
“I strongly believe that knowledge gives you hope,” Ev says from experience. Because while myeloma is incurable, she is committed to convincing people that it doesn’t have to be lonely.
This is part of Dot Health’s #HealthStories series, where we highlight individuals from across Canada and their experience with the healthcare system in Canada as a patient, caregiver, or advocate.
Dot Health is a Toronto-based digital health company that believes health information belongs in the hands of its owner: you. Through our web andmobile app, we empower Canadians to own and control their health data, from clinics, hospitals, labs, and pharmacies.
