Approximately 11 Canadians per day are diagnosed with multiple myeloma. Yet, most of us hadn’t heard those words before being diagnosed, and unfortunately, our family doctors haven’t either. Friday, Sept. 4, 2009 was a nice day; we’d looked forward to the long weekend to visit and relax. In a positive mood, I attended a follow-up appointment with the infection control team, expecting to hear my lab results were fine and 6 weeks of IV antibiotics were done. I’d almost recovered from a nasty infection in my prosthetic knee that had caused septicemia (infection in the blood) and resulted in major surgery to remove the infected tissue and my prosthesis. The doctor looked more serious than usual because my lab results were abnormally high. His next words shattered me! “You have a blood cancer”. He briefly explained myeloma, gave me the lab report and said to see my family doctor ASAP for an urgent referral to a hematologist. It was a very different weekend for my husband and me as we researched this “new to us” disease. It became clear that myeloma had caused the 18 months of fatigue, anemia, infections and vague bodily symptoms I’d experienced. Thus began many specialist appointments, frequent bloodwork, bone marrow biopsies, five rounds of chemotherapy, and a stem cell transplant in 2010. Hope came from positive stories from attentive medical staff and other patients. We developed friendships, shared our experiences and supported each other. I required another total knee replacement and months of rehab before returning to work on maintenance therapy in 2011. During all the challenges, ups and downs, highs and lows, my incredible husband, family and friends cheered, cried, cajoled, cooked, cleaned, drove, carried, hugged and loved me. That support was hugely important.Regretfully I relapsed one year later. It was difficult, but necessary, to retire from a fulfilling nursing career. Four more years of chemotherapy began in March 2012. I ate a healthier diet, recommended by a cancer nutritionist, and did regular exercise. Yoga Thrive, a program designed at the U. of C. specifically for cancer patients and survivors, promoted relaxation and stress reduction. Complementary therapies such as massage, reflexology, meditation and music greatly improved my mood. I joined the Southern Alberta Myeloma Patient Society (SAMPS), initially to participate in events and later to provide resources and support to other myeloma patients.By 2013 my myeloma status was stable again; in 2016 the maintenance chemo was discontinued due to side effects. I’m extremely grateful to have remained stable. With my improved health, we enjoyed some holidays and downsized our living situation before my husband passed away with lung cancer in 2022. My story is only one of many; myeloma patients’ journeys are all different and uniquely theirs. Sadly, we still see delayed diagnosis due to lack of awareness and knowledge in the medical community and general public. There is also the harsh reality of attending memorials when our friends die. Complications from myeloma and treatments, infections and other primary malignancies contribute to death in too many patients. We’re fortunate to have the University of Calgary and Tom Baker Care Centre collaborating on research and clinical trials taking place in centers worldwide. I deeply appreciate everyone involved in finding and improving treatments.
Adapted from Myeloma Canada’s website:Multiple myeloma, commonly referred to as myeloma, is the second most common form of blood cancer, yet sadly most people have never heard of it. Myeloma is a very complex disease associated with the abnormal behavior and uncontrolled growth of malignant (cancerous) plasma cells, white blood cells made in the bone marrow that produce antibodies to fight infection. These abnormal plasma cells are known as myeloma cells. Because the myeloma cells “crowd out” healthy blood cells, the body can be impacted in a number of ways. The word “multiple” in multiple myeloma indicates that the disease can affect more than one part of the body.The cause or causes of myeloma remain relatively unknown, but there is increasing research that suggests possible associations between myeloma and a decline in the immune function, genetic factors, and the environment. The number of Canadians diagnosed with myeloma is steadily increasing year after year (4,000 in 2022) While there is not yet a cure, people with myeloma are living longer and better lives thanks to recent breakthroughs in research and treatment.
About SAMPS:
SAMPS is a registered charity, dedicated to assisting individuals affected by myeloma and fundraising to promote local myeloma-specific research at the U of C. A volunteer Board of Directors leads SAMPS. If you would like to become a member (membership is free) or would like to volunteer with a team-oriented group, please visit our website at www.samps.ca