As Barbara and I return to Boston for the 3rd time this year, many of you have been asking for an update as I’m at year 2.5 of remission. Part of this trip will be to get my 6-month MRi to make sure any microscopic residuals of the rare head & neck cancer are not rearing their ugly cells along with bunch of appointments that were postponed in Mar due to COVID when we were asked to leave MA.
The removal of cancer from my facial nerve in Dec of 2017 along with the Proton Beam Radiation and Chemo has resulted in 12 side effects which I call the Dirty Dozen. I do my best each day to work through them as they all have an accompanying solution.
Here are the Dirty Dozen…
- Small open wound behind my ear – solution: Hyperbaric Oxygen Treatments- I have 9 remaining of 30 to complete in Boston
- Jaw pain brushing my teeth and eating: Solution- Daily Medication that’s used to treat seizures and numbs the transgeminal nerve which controls the jaw nerve. I’m in 24×7 chronic pain but the meds make it bearable.
- Right eye that does not blink- Solution: platinum eye lid weight sewn in to help it close during the day and gel at night to cement it close to sleep
- Dry mouth from removal of my parotid gland where the cancer was detected and removed- Solution: Humidifier at night and special toothpaste and mouthwash (Biotine)
- Loss of hearing in my right ear- Solution: Lip Reading, which is now impossible with masks, so I just have to be very diligent at listening. Please be patient with me if I ask you to repeat yourself multiple times! Adapting to hearing with 1 ear has been much more challenging than it thought it would be.
- Tinnitus (ear ringing)- Solution: Sound Machine at night to counterbalance noise
- Vocal cord paralysis- Solution: Injections every 3-5 months into my right vocal cord to talk longer than 30 minutes or I get extremely raspy and lose the ability to talk at all
- Swollen Cerebellum from Proton Bean radiation resulting in balance issues- Solution: Yoga, but I still stumble into things. Sometimes I jog down the driveway to get the mail and I must look so funny!
- Fibrosis of the jaw from Proton Beam- Solution: Physical Therapy and daily use of a jaw stretching machine called a Therabite.
- Jaw Spasms that are sharp, quick and come out of nowhere – Solution: Botox injections and muscle relaxers.
- Cranial Nerve Paralysis which controls the tongue as it’s a bit skewed to the right- Solution: Daily swallow exercises.
- Frequent ear infections- Solution: Special Ear Drops as needed.
Part of this 3rd trip to Boston is to have follow-up with 10 different Dr’s who specialize in each of these areas to assess the healing progress and determine if anything else can be done.
I’m so grateful to have Barb by my side and we hope this trip to Boston is an easy In & Out! I’m also hoping we can reduce the Dirty Dozen to single digits as quite candidly I need a freaking break!
Stay safe out there!