The ups and downs of living with chronic blood cancer
“Did I hear you right? This is chronic, and it won’t go away?”
Mark Silverstein of Aurora, Ont. vividly remembers asking his hematologist these questions during their initial meeting almost ten years ago. Then 45, Silverstein had just been told the name of the blood cancer he’s been living with ever since: chronic lymphocytic leukemia (CLL).
Silverstein is one of an estimated 22,510 Canadians living with or in remission from leukemia. CLL, a slow-progressing cancer of the lymphocyte cells, is the most common type of leukemia in adults, according to The Leukemia & Lymphoma Society of Canada. The typical CLL patient is diagnosed after age 70, often through routine bloodwork. In some people, the disease may never progress further, while others, like Silverstein, develop advanced disease.
While chronic forms of leukemia like CLL may be slower-moving than other forms of the disease, they present significant challenges for those living with them.
“There are so many different things to grieve,” Silverstein says of life with CLL. “Losing your job, losing what your future looks like and losing control of your body and your health.”
When Silverstein was first diagnosed, the possibility of leaving his wife Nelia alone to raise his two step-children – then 11 and 12 – was a constant fear. As well, Silverstein, who is an only child, worried about the impact on his mother and father. “Putting my parents through that kind of pain is an overwhelming concept,” he says.
The chronic nature of the disease can also prolong the physical and emotional toll. Over the past decade, Silverstein has gone through numerous treatments, including chemotherapy, other medications or “targeted therapies” and a stem cell transplant.
“Treatments are designed to treat symptoms and put the disease into remission for as long as possible,” explains Dr. Mona Shafey, a hematologist and associate professor at the Arnie Charbonneau Cancer Institute in Calgary.
That means seesawing between the symptoms of the disease, which include crushing exhaustion and brain fog (problems with mental clarity and memory) and the side effects of treatment, which range from nausea and infections to shortness of breath. These effects impact every aspect of life, Silverstein says.
“Your sex life, how much time and energy you have for your partner – all these things are affected.”
Chronic disease can also be extremely challenging for care partners. During times when Silverstein has been coping with the disease or treatment, Nelia has had to be the sole breadwinner in the family, taking on the responsibilities of finances and the kids. The family has dealt with lost income due to illness, as well as out-of-pocket payments for therapies not covered by the provincial health plan.
“And it’s not just a blip,” Silverstein says. “It’s a marathon.”
Chronic cancers can often fall off the radar, adding to the burden of those living with them. As part of their commitment to providing guidance and support for people living all types of cancer, The Leukemia & Lymphoma Society of Canada recently hosted a webcast called Living with a Chronic Blood Cancer on their website: llscanada.org. The webcast features Ottawa-based nurse and psychotherapist Bonney Elliott addressing the psychosocial impacts of living with a chronic blood cancer on quality of life, stress and social and family relationships.
“Improved treatments and survival rates mean that more people are living longer with cancer as a chronic disease while dealing with short- and long-term side effects of treatment,” Elliott says in the webcast. “Workplace and insurance company policies, our expectations of ourselves and the social world we live in have not caught up with this reality.”
Elliott goes through the various ways chronic blood cancer can affect patients, from physical and mental effects like fatigue and brain fog to emotional effects like coping with fears of the future. Elliott focuses on practical things that can help when people are living with a chronic blood cancer. For example, she notes that in any time of stress, it’s important to stick to the basics in order to increase quality of life: sleep, exercise, eating well and drinking water.
“These are probably the most important things in terms of staying balanced and healthy and positive,” she says.
While living with CLL does have difficulties – Silverstein is currently dealing with his fourth relapse – he says it’s helped him focus on what he finds most meaningful in life: his family and advocating for other patients and families. After a particularly harrowing experience with a treatment, Silverstein joined a 10-week program for cancer survivors offered by a local hospice. “It really, really helped me,” he says.
The program inspired Silverstein to go back to school and start a new career as a psychotherapist and counsellor. He now co-facilitates both a CLL support group and the program for cancer survivors that inspired him, which is called Picking Up the Pieces.
His experiences have also deepened his relationship with his family, he says.
“There was a time not long ago when I didn’t think I’d make it to 55,” he says, “but I’m here, and I’m grateful for that.”
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