Invitation to tell your story

I invite you to tell your story. It is important for you to tell it to others and for others to hear. Everyone of us is different and have a different story. Our outcomes are different and when live our lives we are affected in many ways. I hope you stories help others.

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October 5, 2023

My previous post about going through diagnosis, treatments, and so on, is like many others. There are really hellish times, times to laugh or cry, nights you never talk about to others besides your caregivers, and time to come to an understanding of the trauma that was handed to you on the breat cancer platter. I don't know if we ever heal but an understanding seems reasonable. Now on to the "musician" part of my story.

As a musician, trumpeter, and conductor, I had a lot of learning to accomodate my new normal. Having had both breasts removed (the right one was done to prevent the possibilty of cancer on that side) I have scar tissue that it tightly adhered to my chest wall and I feel like I am being squeezed. I do lots of stretching before I play or conduct. My fingers (and toes) have neuropathy so I can't feel them. They get cold and stiff. My leg nerves have never really recovered from the pain and I continue to find walking a challenge because it is so damn painful. But the absolutely worst is the osteoarthritis throughout every joint in my body. My hips were the first to be diagnosed as having severe damage so I have now had both hips replaced. My fingers are swollen and don't bend much but this doesn't seem to affect my playing much. I am hopeful that nothing gets worse. Fingers crossed. All of this, more or less, is typical of the paclitaxol or docetaxol chemo. But what I discovered is neuropathy in places never expected. My lips and nose and ears!!! As a trumpeter this is devastating to discover.

I mentioned that I did a faculty recital mid-chemo in February 2018 and I played either my mouthpiece or horn every day during treatments and I truly believe that I am able to play my horn now because I did this. I wish I would have known that when the cancer center warned of finger and toe neuropathy during and possibly after treatment they really meant that all extremities get neuropathy. And chemo-brain also means that muscle memory and the neurological pathways between your fingers, eyes, and brain is affected, not just your memory. These are the things I learned about the afffects of dreaded chemo. Neuropathy affects your lips and face muscles. Chemo-brain is also a disconnect between fine motor skills and the brain. As musicians we are never told this, or at least I wasn't. My lip muscles were excercised daily yet I still came out with muscles I could no longer rely on to perform as they used to perform. During preparation for the recital mid-chemo I felt like I was sightreading the music everyday for months. I knew that music yet I could not rely on my fingers to take over nor could I rely on any amount of repetition to engrave a passage in my brain or in my finger or lip muscles. It just didn't happen. The connections were not being made. I truly feel that all would have been much worse, however, if I had not tried to play my horn during treatment. I'm not sure I would be a musician still. And that is scary.