Earlier this year, the Canadian CML Network hosted its first “Living Well with CML” conference. The meeting included discussions of nutrition, specifically, how to use food to manage side effects; a question and answer period with a top CML doctor; and provided answers about some of the basics of CML (what the heck is a log reduction, anyway?). We had other great topics too, such as how to influence the government when it comes to healthcare decisions – why do we wait so long for cancer drugs? But one moment stood out for me in a really big way.
The group had split off, with spouses (including my husband Kevin), partners, friends and other family members moving into another room for a discussion moderated by Nancy Pringle, an oncology nurse at Princess Margaret Hospital in Toronto. When they rejoined us after a little more than an hour, Kevin sat down beside me and described a discussion filled with fear and doubt and even tears.
Why is there still fear and anxiety given that, for the most part, CML is managed well with medication? For many of us, the prognosis is good. Very good. A CML nurse told me once that I had the “lucky leukemia.” For the record, I am not sure I would have put it that way exactly. But the truth is that the odds are totally in our favour. In fact, I’ve lost count how many times I’ve heard a doctor say that I won’t die of CML – that something else is going to kill me. (I prefer to think that nothing will kill me, but at least I can strike CML off of the long list of possibilities.) So if the future is this bright, why the fear and the tears?
Maybe because CML – even with all its good news – is scary and sad.
Meet Tracy. I first met Tracy a year ago. It was a few months after she was diagnosed. She was responding well to medication and meeting the milestones as her doctor expected. She was well on her way to remission and would be yet another successful CML story – at least that’s how her doctor saw it. But for Tracy, things looked very different. In fact, as her numbers got better, she felt worse than ever. The appointments with her doctor became shorter and less frequent, but Tracy found she needed her doctor more than ever.
“Doctors focus on clinical factors, but not on ongoing side effects like fatigue, pain, and memory and concentration issues,” she wrote in an email. She went on to say that these side effects create significant quality of life issues. For her, fatigue made it impossible to maintain her pre-CML work schedule and in the end she had to leave her job. “I wish someone would have told me how tired I would be.”
Yes, Tracy, you’re right. We need to be told that we are most likely going to be all right, but also that the medication that is going to save our lives is also going to kick our butts. We won’t feel as energized, clear-headed and carefree as we did before we were diagnosed. We will be reminded that we are living with a scary disease every time we reach for our medicine. That our lives have changed forever.
“These issues may seem minor to cancer specialists who see people dying everyday,” Tracy wrote. “But we need more than to be told that CML won’t kill us.”
Of course we’re very aware of how lucky we are. Relative to the seemingly unlimited and horrible cancer possibilities that are out there, CML is a walk in the park. But our journey doesn’t end with a successful response to medication. In fact, in many ways, it only just begins. Once the initial health crisis has passed, life-affecting side effects and emotional issues like depression and anxiety become the real challenge. Until our doctors and nurses understand this, we will continue to struggle. And maybe feel sometimes desperately scared, sad and yes, a little unlucky.