Music as the Great Escape (Part 1)
Music has played a role in my life and holds an important place in my chronic myeloid leukemia (CML) journey as well.
I started clarinet lessons at the age of 7, playing in school bands all through high school. My high school band was highly competitive and because of my participation, I was able to travel. We won championships in Washington D.C., New York and Toronto, Canada, and different communities around the state. We were chosen to appear in a parade during the Winter Olympics in Lake Placid, New York, and at the ski jump medal ceremony. The group made me feel like I was part of something special.
As an adult, I continued to play in both traveling marching bands and more traditional concert bands. When I moved away from the area mid-season, I initially intended to complete the year and then hang it up, so to speak. But I found I couldn’t. Instead, I commuted back and forth, seeing my friends and maintaining my place in a high-caliber symphonic band.
What has this got to do with blood cancer? I’m getting to that.
I didn't want to let myself down
Nearly seven years ago, I got the news of my diagnosis and my health took a nosedive. I remember talking to the band director, telling him what was going on. He said that he understood if I had to leave, but that if I wanted to stay, I was welcome.
Again, it was a relief that I had the option of being in a group that was not centered around CML. (I’ve yet to find an in-person support group in my area for leukemia). So, I made it my mission, one season at a time, to continue with the travel, rehearsing, and performing with the band. Every fall when we’d start, I would fear that my lack of stamina would not let me play at the necessary ability level. I would be afraid that the brain fog I experience because of my treatment, TKIs, would make me somehow forget how to read music.
But, I was wrong. Whether I felt lousy or not in those first few years, I would turn up at rehearsals and force myself to concentrate. I would will myself to play and keep up with the talented musicians around me. I didn’t want to let them or myself down.
My way of fighting back
And when I was able to succeed at it, I was thrilled. It's my way of fighting back, (as I'm fond of saying), throwing a finger at CML. To be honest, when I’m playing in the band, it is the only time I feel like myself—my real, former self, not the blood cancer patient Susan. Shout out to my fellow band members who don't treat me strangely or feel weird or uncomfortable in my midst.
I can will myself to concentrate, challenging myself with every note. Thankfully, I feel like it is one challenge I can overcome. I’ve never faced anything as challenging as CML, and most times, it doesn’t feel like I’m whipping it. So, every little triumph helps, right?
As the years went by and my condition and blood counts fluctuated and not for the better, I was forced to drop out for a particular concert here and there. Two bouts of pneumonia didn’t help. But I still only missed three or four events in six-plus years, so I guess that’s not a bad record considering...
The pandemic has shut that band down still and most others. In Part 2, I’ll talk about the leap of faith I took to try something new and also other ways music helps me cope with blood cancer.
Have you met another blood cancer patient?