The first step of direct high dosage radiation was to have a plastic model of my tongue made. This plastic model of my tongue would also have five tracks with long, narrow, hollow wires connected to the left side and top part. It had to be lined up just right to hit the areas that Dr. Barrett wanted to treat. I didn’t realize it at the time but radiation pellets would run from their original source in the radiation room through the wire tubes and up to my tongue where they would essentially burn and destroy any cancer cells as well as nearby healthy cells. The goal was to be as accurate as possible to kill any microscopic cancer cells and limit the damage to the healthy cells.
Fortunately, there is a very talented dentist who specializes in maxillofacial prosthodontics, a rare specialty, indeed. Dr. Gordon Huntress is associated with UC Physicians and I met him in late January along with Dr. Barrett in his office above the Barrett Cancer Center. Dr. Huntress is a very friendly and mild-mannered man and I felt comfortable with him. He took measurements and talked about options with Dr. Barrett. I went back a week later and he had a plastic model made which he put in and it promptly broke. He made another one and it also broke. There was some sort of design problem as I recall and so Dr. Barrett and Dr. Huntress huddled again. Eventually, the model was made and it was much thicker than the original idea. It was a tight fit that required I open my mouth as widely as I possibly could and hold it that way for several minutes. I thought I could handle it and we were ready to start the treatments.
I went to UC hospital where the radiation would be performed to meet the people who would be doing the treatments and to get the lay of the land, as well as to learn parking procedures, walking directions, etc. They were kind enough to get me in early and I didn’t want to be late. I’m pretty sure it is a prerequisite for nurses in that field to be outgoing and friendly and these nurses and technicians could not have been nicer as they made me feel welcome and comfortable.
It was time to begin. Sadly, at the same time Mother’s condition was worsening and I was making daily trips back and forth to Lancaster after school. I was working, driving to Lancaster – 2 hours away, spending the night getting up to gladly help Mother, helping her in the morning, driving to downtown Cincinnati for the radiation treatment, and then driving to school in time for the day to begin. Fortunately, I was working at the middle school, which let out at 2:30 and I was able to get to Lancaster around 4:30 each day and then of course spent the weekends. This was no big deal and everyone in our family was making sacrifices and doing everything we could for Mother, as well as for Dad.
At the first treatment I actually had to laugh. I sat in a chair and was strapped in as if I were in the electric chair. Then a technician explained how it was going to work and that a pellet would run through the wire, do whatever it did to my tongue for 2 minutes or so, and then the next pellet would come in and this would be repeated 5 times as I recall. In total, I wasn’t in that chair more than about 15 minutes and the entire time I was there was typically about a half hour. They understood my situation and were very efficient. After they put the plastic mold in my mouth, covered me up, and everything was set, the technician and others scurried or I dare say ran out of that room and got behind a metal wall to protect themselves. It made me worry about what was going on and just how dangerous all of this was beyond the radiation hitting specific areas in my mouth. They were in a control room that was like a small television studio control room and I was alone in that chair trying to hold my mouth open and wanting to get out of there and get to work. I counted each pellet and prayed while it was releasing the radiation.
The first 3-4 treatments were no big deal, other than it was harder than expected to hold still and have my mouth stretched so widely open for so long. My speech was not affected and I felt a bit of discomfort on my tongue but no real problem.
However poorly I sounded, I would sing to Mother to try to distract her from uncomfortable situations and just get her to focus on the song and she seemed to like it, so I was glad I could do that without pain or slurring. Soon, though, that changed, and changed dramatically. The first week was a partial week of treatments but once we got into the second week my tongue started to show damage and it became incredibly painful. The entire left side of my tongue and the top left and front area turned white and looked like, and felt like, an enormous cold sore or canker sore. I used to get those with some regularity and even a small one was uncomfortable and at times painful. Think about it – in a senses my tongue was being burned on a daily basis.
Dr. Barrett gave me a bottle of Lidocaine and with each succeeding day I applied more and more and kept running out. As the days went by the pain got worse, especially on the front part of my tongue which seemed especially sensitive to the radiation. That area got so bad that Dr. Barrett stopped treating it, so the remaining treatments involved only 4 pellets.
Each time before the treatment I would see Dr. Barrett we would talk and he was kind enough to answer my questions about Mother. In early March, 2006, I told Dr. Barrett about Mother’s current situation. I wasn’t prepared for the answer to my question of how long, which was, “days.” I broke down emotionally and walked away to a corner in a nearby room and Dr. Barrett followed me and offered incredibly kind comfort. There, alone, crying in a corner in a hospital, I felt lost and didn’t want to be there. I wanted to be with Mother. I am not sure how I would have gotten through that day if Dr. Barrett had not been so sensitive and caring. He also called me late that night when I was in Lancaster and then again several times.
It can’t be.
Say months, not days.
With a tongue that felt like one large cold sore I had to ask a what if. What if Mother dies and these treatments aren’t finished? They don’t like to take breaks once they start and he said maybe a day or two but no more.
I needed more Lidocaine, which I had taken to calling goop, and I needed lots of it.
Mother passed away Friday evening, March 10, 2006. I was with her. A final song. In deference to the sanctity of that time with my family I am choosing not to write about it. Suffice it to say we were all devastated. I love Mother, I love Dad, and I love all of my siblings, their spouses, and their children.
This entry is about the radiation. At the funeral home my tongue was really hurting and it seemed like every 5-10 minutes I was putting heavy doses of Lidocaine on my finger and rubbing it all over the affected area. I would see a friend or relative and thank them for coming and then quickly excuse myself to go into another room to put more goop on my tongue. I also carried some hand cleanser to clean my hand after each application. Frankly, getting away for a moment may have helped because I was not good at covering my grief and the brief time away helped. The only people who understood what I was experiencing were my family and that was good, too.
I wanted to deliver Mother’s eulogy and prayed as hard as I could for God to give me 5 minutes without pain so I could do that. After Jim, Karen, Kathy, and Joe did a great job with the readings and Psalms, I pounded as much Lidocaine as I could on my tongue. The Good Lord answered my prayers as my tongue was a complete non-issue during the eulogy. It was the greatest honor of my life and I am thankful that God let me get through that.
A few days later the final treatment occurred and I happily walked away from that part of this journey. Happily? Not really. I eventually lost my tongue but the loss of Mother was and is worse.
Dr. Barrett told me it would take several months to recover from the radiation. It cleared up and that was good, but it took an entire year before I fully regained my strength. After effects involved nausea, loss of appetite, weakness, and generally feeling poor. With each passing month I got stronger and healthier. That fall I remember playing golf with a friend and we ordered a beer for the 19th hole. Even all those months later I took one sip of that beer, it didn’t feel good at all, my stomach was bothering me, and I was worn out. We walked away and I threw the beer in the can, then struggled to my car.
When I was first told of the side effects of radiation I told my principal that I would not miss a day of school and I’d be strong throughout. She said I was a Type A. That macho stuff is all well and good ….. until you’re crawling to the bathroom at 3:00 a.m.
Little did I know that three years later radiation would again be necessary.