When a Pill Is Not Just A Pill
Last week, I had several medical appointments, two of which were with practitioners I had never seen before. To be clear, neither of them had anything to do with blood cancer, hematology, or my condition called chronic myeloid leukemia. But they are still in the medical field.
However, that part of my medical record appeared on my computer screen so they had questions. I was happy to say that I’d lived with CML for seven years, was treated with tyrosine kinase inhibitors (TKIs), and so on.
The first person’s response was, “so you just take a pill every day? That’s it?” If only it was so simple. Maybe I was reading into things but her tone told me otherwise. I would be more than happy to conduct an experiment, to hand out that pill and let her try it for a while and see what happens. Better still, if I wanted to create a realistic scenario, let's have her take it for years and years every day.
That little pill has side effects. Heck, I’ll print out the pages and pages that come in the sealed package noting the toxicity of it all. And all of those pages don’t begin to tell the story about the damage it is doing to my other organs and overall health.
My hair is the least of my problems
After listening to my spiel when the second person asked me about CML, she had this to say: “You didn’t lose your hair though.” That’s partially true. My light brown, very thick hair is now dark brown and extremely thin. I did lose chunks of my hair so it is pretty patchy, and not very attractive. But yes, she is correct, there is some still there.
To me, my hair is the least of my problems. CML has uprooted my entire life. I struggle just to walk. I use a cane and suffer from unending problems from neuropathy to sharp pains in my bones, my legs. I’ve suffered sprains, tears and strains, and all sorts of things I never worried about before. The vertebrae in my back have slipped.
Suddenly, I’m experiencing dental issues I’ve never had in my life without changing any of my hygiene habits that served me well my entire life pre-blood cancer. I now have high blood pressure. I have to worry about plural effusions. In addition, when I started TKIs, I experienced a large weight gain, which in turn, makes me susceptible to other ailments. When I’m hobbling around in pain each day, I’m not thinking about my hair.
We must soldier on
My response to her was that my hair thinned out and some fell out, yes, not all. I suppose to others, that makes my leukemia tolerable and easier to swallow. I’m fond of saying I’d rather have a cure than hair. But alas, there isn’t one yet so all of us CMLers have to soldier on.
I wasn’t planning on sounding grouchy today, but I think these two individuals need to stop and think about what they are saying. They just finished telling me they didn’t know anything about CML. I proceeded to describe it—and those questions were the result.
How about: Are you coping all right? How is your treatment going? Sometimes, a pill is not just a pill.
Am I wrong?
Have you met another blood cancer patient?