Relay for Life Event in KC

It’s been a while since I’ve updated everyone on my progress. I continue to have less fatigue, and I’m now able to work a 40-hour workweek. The combination of sleeping more than in the past and putting a priority on my trumpet, which is helping rehabilitation of my tongue and facial area, has resulted in not enough time for me to workout regularly. I hope to change that soon.

In late May, I transitioned from speech therapy to lymphoedema therapy. I still do not speak clearly, but until my tongue gains more mobility there is not a lot I can do to improve my diction. The lymphoedema therapy aids the function of my lymph nodes, which were damaged from the radiation treatment. A very gentle massage along the paths where the lymph nodes drain helps avoid pooling of fluids in my neck. I’m also working with this therapist to open my mouth further. When I began my mouth would open 2.5 cm. I’m now at 3 cm. My next goal is to open wide enough to fit two knuckles into my mouth. If you try this, you will probably be able to insert three knuckles between your teeth. Finally, this therapy is improving my neck’s range of motion. My mobility has improved 20 degrees or more in four of six directions.

For those of you in Kansas City, I would like to invite you to a Relay for Life event, which is sponsored by the American Cancer Society. The band Theresa and I play in, Soul Focus, will perform a 40-minute set beginning a little after 6:00 PM. The event is scheduled at Oak Grove Park, which is a few blocks east of North Oak Trafficway and 76th street in Gladstone, Missouri. It would be great to see and share our music with you. Nothing is required of you. Just show up and enjoy the music.

The weekend of June 21st Soul Focus played in Nashville as part of a combined Gibson Summer Jam and Battle of the Corporate Bands event. As past winners, we can’t compete again, but it was a blast playing at a big event again. The band opened with the Chicago song Beginnings. After I played the trumpet solo, Theresa, who was on stage singing, began crying. The depth of appreciation for the little joys in life has not waned for either of us. Both of us cherish moments in life and relationships with friends and family like we never have before. While I still am not able to perform technical elements on my horn like double tonguing, my embouchure strength has returned enough to play most music.

Since my last post in May, I had one EGD procedure. The good news is my esophagus only narrowed by 1 cm over six weeks. The GI doctor was able to increase the diameter to 16 mm in my last procedure on July 1st. While 18-20 cm is considered functional, most people have an opening of 25-30 cm.

In August, I will have another PET scan. If all goes well, I’ll be cleared for Vital Stem. This procedure will stimulate my swallowing muscles and retrain them. I’m able to eat by mouth one or two times a day. I’ve advanced to chunky soups and stews. I need a lot of liquid to help move the food down my throat.

While progress is slow, its sure and steady. I continue to be reminded of just how much one can live life without all of the abilities we take for granted. I always admired disabled individuals when they participated fully in life. And, while I’m far from disabled, I have a new appreciation for how one can feel just as much a part of society even thought all the pieces and parts may not work like they should.