When a Prince Edward Island man living with a rare blood cancer sent a note last year to say he had decided to stop taking his medication — the medication that was keeping his cancer in check — because he couldn’t live with the side effects anymore, there were many people in the leukemia community who were shocked.
“We are so lucky to have a medication that has saved our lives, why would you choose to die?” was one Facebook post from someone who had been living with blood cancer for more than a decade.
Certainly on the surface, such a decision — one surely not made easily — seems bananas. Choosing death, an agonizing one at that, instead of life? But when the man described in detail the things that plagued him everyday including, bone pain, anxiety, nausea, diarrhea, vomiting, muscle spasms that made it impossible to type on his phone, brain fog, headaches and fatigue (especially the fatigue! he had written in big letters) — all things that had turned a very social social life into one that was darkly reclusive and lonely — it’s not so difficult to see how extending life would suddenly lose its appeal.
It really stinks, actually. There you are going along in your life when you and your body come under siege by a brutal, unforgiving disease determined to take you down and offering worrying clues with painfully unrelenting symptoms. Then you experience the joy and relief of finding out there is a medicine to chokeslam it. Except that while said battle is raging inside you — and for a long time afterwards — many of the awful symptoms that led you to the treatment in the first place don’t disappear. In fact, they get worse, piggybacking on a whole slew of other unpleasant things that make living through it, and with it, seem impossible, and worse, unwanted.
It’s a sad irony that ripples through all cancer types — people with access to life-saving therapies that have such negative and life-changing impacts on their lives that they would rather die. In fact, it’s so pervasive that researchers at
Oregon Health & Science University (OHSU) have created a Symptom Science Research Group, running clinical trials to study what causes these symptoms and side effects and identify biomarkers that predict treatment toxicity to improve quality of life for people with cancer.