An Ear Infection

It was Spring ‘21 and I was in Houston, TX to start the event season and had lined up shows including Round Top. Round Top is sixteen miles of two-lane Texas highway with sixty different venues and more than two thousand vendors for near a month. I wasn’t feeling great and believed I had an ear infection. Being based in Michigan I opted to hit a CVS clinic as they could provide service under my VA healthcare. Finished Round Top, said goodbye to mom and returned to Michigan for the market season.

The ear infection persisted, but I ignored it for the better part of a year as it seemed to come and go. It wasn’t painful at this point. I felt a fullness in my left ear and I was busy so it was easy to ignore.

Regular VA Checkup

I was seeing my PCP, Dr. Diaz, and explained how I had this fullness in my ear. We got a referral for an ENT and I shortly had a nasal endoscopy and biopsy of a mass in my sinus. The biopsy came back negative for cancer so it was agreed we’d leave it. Around the same time Dr. Diaz wanted me to get a head CT scan. That done he called to let me know there was a shadow in the area of my pituitary on the scan and he wanted me to see an endocrinologist. After blood tests we discovered I had a pituitary tumor that was causing a disease called, acromegaly. The course of treatment was surgery to remove the tumor.

In preparation for the surgery I needed to see another ENT surgeon. It had been months since the first biopsy. He performed another nasal endoscopy and informed me the mass looked “pretty angry” at this point. It was decided that during the pituitary tumor surgery he would biopsy the mass. If it came back negative he would remove the mass. If cancerous, he would do nothing because now we have a completely different situation. The mass came back positive for cancer on December 3, 2022.

Nasopharyngeal Cancer (NPC)

Jan 23, 2023 I met with my hematology oncologist and my radiation oncologist. That is when I learned the type of cancer I have. My cancer is caused by the Epstein-Barr virus. Something like 90% of the world’s population has in their system. Less than 1% develop cancer, in my case NPC which is even less prevalent in white males. The prevalent treatment is seven weeks of chemo once each week with radiation five times a week. The doctor explained his concern that my diagnosis appeared especially aggressive and his recommendation was I complete nine weeks of induction (heavy) chemo. Once completed I would move to the seven week cycle of chemo and radiation.

Induction Chemo

My photo on the left is me at the beginning. Two-hundred and ten pounds with my full beard. Induction chemo was not a good time. What made it work is the infusion nurses at the Ann Arbor VA. They were always kind to me and did everything they could to make me comfortable. My program was three three-week cycles. Week one was two bags (one Cisplatin and one Gemcitobine), week two was one Gemcitobine and week three I was off. In the first cycle my blood markers took a dip and I had to inject myself with a drug to bring my immune system up.

The induction chemo was completed and it worked! The tumor in my sinus was visibly smaller and reduced in size as seen on the scan. In fact, it was so much smaller the radiation team had to update my radiation plan with how the radiation would be shot into my head and neck.

Don’t Move

For most radiation treatments you need to keep very still and not move. I know in my case it was critical to not move my head at all. This is me getting fitted for the mask I would wear at all thirty-five treatments. The technicians would lock this thing down on my face and shoulders. It worked, I could not move. Each time I would focus on my breathing and not think about being strapped in. I lost weight in face and started having to tuck my chin so the radiation hit the right spots. I had a three week break before I started my seven-week treatment cycle. It was GLORIOUS! I ate all things and tasted it all.

Treatment Starts

At the start of my treatment cycle I was feeling pretty positive. In fact, one of the radiation technicians indicated lets see how your doing at the end. Mondays I was infused in the morning and radiated in the afternoon. Tuesday through Friday I received radiation in the afternoons. I made it my personal mission to try and make the technicians smile, giggle or laugh at every treatment. I made jokes, said stupids things was generally silly and it worked. Those professionals have to work with some folks who feel really really bad. It can be an unpleasant experience for everyone. If I could lighten things up even a smidge I felt better about myself.

Well That Wasn’t Pleasant

Having completed the induction chemo I thought I knew what was coming. I did not know. On the surface I lost more of my beard each week and finally it was all gone. Currently I only need to shave about every two weeks and that is in two small spots in front of my ears. I would come home each day and nap for one to three hours.

Week three was the worst. I was between still eating regular food and starting to intake Ensure Plus. I completely underestimated the calories I needed to maintain and heal. Lost twelve pounds in four days. The doctors threatened me with an NG tube (nasal gastric bypass feeding tube) if I didn’t stabilize my weight. I got things in hand drinking six Ensure Plus and a protein drink each day. During treatment I went from 210 to 178 lbs. It would’ve been impossible for me to consume the calories and achieve the nutrition profile of the Ensure. It saved me.

My neck was taking a beating. However, I used CeraVe and completely endorse it. I applied it liberally after treatment, again at dinner, and again before I went to bed. I showered less frequently so as not to aggravate or dry out my skin.

July 2023

I’m writing this and I’m eight weeks from my last radiation treatment. Very little of my ability to taste has returned, but there is some. Most things I used to enjoy no longer work for me. My primary salivary glands are not working so eating anything, I must consume liquids with it or it balls up in my mouth. My shoulders and neck have started to feel sore. That is new, but not totally unexpected.

September 2023

Had my PET scan and two MRIs. The doctors have told me my scans are CLEAR! I am cancer free!!! I will need to have check ups and new scans every six months. Ninety percent of my taste has returned and I’m feeling pretty darn good. No beard, but I have a funky little goatee thing going on. Thank you to the VA teams in Hematology and Radiology Oncology. You people ROCK!!!