For many, the notion of living on an island conjures images of a tropical oasis and a slow, easy lifestyle. Carol Westberg has a very different take on the idea.
“I live on Cancer Island,” the 55-year-old Calgarian explains. “For people like me who live with an incurable disease, you can venture off for short voyages but the boat eventually turns you around and you find yourself back in that lonely place.”
In 2004, Carol was diagnosed with multiple myeloma, the second most common blood cancer after non-Hodgkin’s lymphoma. The aggressive disease represents one per cent of all cancers and two per cent of all cancer deaths. There are approximately 6000 multiple myeloma patients in Canada, 700 of which are in Alberta.
The disease put an end to her career as a home organizer, which often involved moving furniture and heavy items to “stage” houses for real estate showings. “The cancer, and the side effects from treatment, lead to severe back pain and brittle bones that can easily break,” Carol says. “I was told not to lift anything more than five pounds.”
Carol’s time was equally as limited, as she spent long days at her cancer centre undergoing infusion chemotherapy and, after five months of treatment, a transplant of her own stem cells that had previously been harvested.
The approach led to a 14-month remission, but the cancer returned. In March 2010, she underwent radiation therapy to treat a large tumour on her spine that pressed against the nerves in her leg and caused her tremendous pain.
“After my transplant, I was on my own for a year before connecting with another patient and sharing our experience,” she explains. “A chance conversation with a nurse introduced me to the idea of Cancer Island. People who don’t live with cancer don’t want to think about it or talk about it; everyone is just getting on with their lives. But a cancer patient can’t even plan for tomorrow because of the pain and the side effects of treatment. You end up feeling like you don’t fit in the world anymore.”
Carol’s response was to make a difference in the lives of those living with multiple myeloma. Bringing together a steering committee of 10 patient and caregiver “warriors”, she started the Southern Alberta Myeloma Patient Society, one of the largest myeloma support groups in the country. Between fielding calls from newly diagnosed patients, most of whom are in a state of shock, and speaking to student nurses at Mount Royal University about life as a cancer patient, she launched a walk/run event to raise funds and profile.
“We’ve raised over $70,000 for myeloma research in two years,” Carol says, “all of which stays in Alberta through our association with the Alberta Cancer Foundation and the University of Calgary.” Carol has also been active with the Campaign to Control Cancer, meeting with the Alberta Minister of Health at the 2008 Cancer Day of Action and speaking publicly at the most recent day of advocacy this November.
One of Carol’s proudest achievements is her role in successfully lobbying the Alberta government to fund Revlimid, a treatment that can cost more than $8000 for 21 pills and is therefore out of reach for cancer patients without private medical coverage.
Her efforts have not gone unnoticed. This year, Carol was nominated as a “Champion of Change” in a campaign launched by the CBC. Her doctor, Nizar Jacques Bahlis, made the nomination and Carol is currently a Top 50 finalist.
Through it all, Carol points out that she feels fortunate for the public coverage that allowed her access to existing treatments, as well as her participation in clinical trials for newer treatments. She was originally told she had three to five years to live; this year she marked the sixth anniversary of her diagnosis.
“To me, this emphasizes the need for a catastrophic drug coverage program,” she stresses. “With new treatments, cancer patients are living longer. We need to have access to different treatments, as there is no one treatment that will help all people with multiple myeloma.
“We need to ensure that people aren’t forced to decline a treatment that might work for them, simply because they don’t have private coverage and they need to ensure that they leave an inheritance for their children.
“We also need to find ways of making new treatments available faster, as they are often held up by current approvals required from Health Canada, the Pan-Canadian Oncology Drug Review and the panels that decide on drugs for provincial formularies. We’re simply losing too many lives each year.”
While Carol is resigned to her live on Cancer Island, she remains a warrior for her cause. “Doing this work is my passion,” she says. “I’m very comfortable in the cancer world as I fit here, and I want the outside world to understand this world as well.”
