I was diagnosed with multiple myeloma in 2015 when I was 39 years old. I suffered excruciating back pain for months and the doctors could not figure out why. I thought I had pulled a muscle. I had been doing a lot of running training for a half marathon and was surprised that I couldn’t even run, the pain was too much. I was also having a hard time catching my breath. After I consulted with physiotherapists, chiropractors, my GP and a massage therapist, we finally did an X-ray and found an inexplicable compression fracture. Then we found another one, and a third fracture, and at that point my kidneys started to fail. An on-call doctor saw all of my symptoms and suggested multiple myeloma.

Finally, an answer to what was causing all the pain.

A shocking diagnosis of cancer overwhelmed me. I thought I was so healthy and that it just wouldn’t happen to me.   

I chose vertebroplasty instead of radiation to stabilize the three damaged vertebrae in my spine. The procedure helped to reduce the pain significantly and I was able to slowly get back to moving and walking. I’ve been living with MM [multiple myeloma] for 7 years now. I have not returned to my beloved teaching job as district music teacher as I now suffer with chronic back pain. Side effects from my treatments and fatigue also contribute to my decision to not return to teaching.   

I am very fortunate as I have never been denied access to a drug or treatment. After six years on Revlimid maintenance I knew I wanted to try daratumumab for my second line of treatment. When I did finally relapse this past September, I was able to access daratumumab with fantastic results. My next recommended treatment is a second stem cell transplant in Vancouver. The fear of this procedure causes me to be very apprehensive as the toxicity I experienced with my first stem cell transplant took a huge toll on me and my body. It took over a year for me to fully recover the last time.

Along with the fear and trepidation of the actual treatment, the burden of having to stay in Vancouver for a month is financially something my family and I cannot afford. Two members of the Northern BC Support Group (of which I am a member) told me it cost them approximately $10,000 to rent a condo that was close to the hospital where, for one month, they had to go for daily check-ups.

I am continuing to research the best treatment options for me as I am trying to play the long game with the goal to live as long as possible with the least amount of side effects. I will continue to follow my doctors’ recommendations and do the treatments suggested, it is just a very difficult decision when you have to weigh options. I can’t afford a $10,000 price tag of staying in Vancouver for a month.

How do I now choose to further our burden of debt for a treatment that may work but also puts me in an extremely vulnerable state in the middle of a worldwide pandemic? I will consider all options and consult with healthcare team: my oncologist, hematologist, GP and GPO (a GPO helps save money while evaluating my options).