I would like to explain how I came up with the name of my blog. My wife was going to use Blender Man but it was taken. I suggested using Blind Blender Man because I am visually impaired.
I was born with an eye defect that left me not being able to see things as far as normal sighted people. Back in the 1950’s the school system couldn’t educate visually impaired people so they said I had to go to the Virginia School for the Deaf and Blind in Staunton, Virginia. I attended VSDB through high school. When I graduated, I went to college for 2 years and became unhappy so I left college and went to work for Business Opportunities for the Blind (BOB), which is a part of the state agency for the blind.
Each state has a BOB program run by the state through the Randolph Shepard Act. We are supervised by the state but given the opportunity to operate like an independent business man. We have places in state buildings, federal buildings, military bases and community colleges.
My first assignment was to go out to the southwestern part of the state and help troubleshoot for the agency. I was then placed at a community college in Southwestern part of the state. I then moved from that college to a branch of a local community college where I worked until I had to retire in 2002.
When I started working, I hired and fired my staff, bought products from vendors, carried out the thrash, did the books, and did a little cooking as well. We were not supposed to cook, but I couldn’t help myself. My mother taught me how to cook, so when I was home on vacations, I would cook and help her with dinner when she went back to work. I also had a great home economics teacher at VSDB because we were taught how to cook, wash clothes, and took a Red Cross class in mother and child care so we would know how to take care of ourselves and our family on our own.
Back in the 50s 60s and 70s it was popular to smoke. At VSDB, the kids could smoke if they had their parent’s consent and were 16. I tried one cigarette and didn’t like it. It smelled bad, tasted bad, and besides, I wrestled and ran track in school and knew it was bad for you. We had several kids who smoked and it was so bad at times, they had to open the window at the end of the hall to let the smoke out. I think that was the start of my problem.
In my first job, I had a room that seated 130 people which was the largest room on campus. The students used it to eat, socialize, play cards, study and we used it to hold school events. They smoked in there all day long and it got so bad, if you were outside, it looked like everyone was in a fog. I must add, one of the things I sold, besides hot and cold food and beverages, was cigarettes. That was the second part of my problem, just continuing in a bigger manner.
Now to be honest, I had no idea that smoking was harmful to you so I can’t blame anyone or anything on my problem. I think I am just as guilty as the cigarette companies, the people that smoked them, and someone like me who sold them.
I moved back home in 1974 and I know that is where my real problem blossomed to a head. They smoked in my cafeteria so bad, that at the end of the day there was only two feet of clean air from the bottom of the floor. Back in my first job I opened at 7 a.m. and closed at 3 p.m. In this job, we opened at 6:30 a.m. and closed at 9 p.m. At first I didn’t have to work all those hours, but as the years went by, and with the labor problems, I needed to be at my job more and more to make sure things got done the way I thought they should be done and the way the college wanted them done. That put me working most days 16 to 18 hours a day. When I came home I would take my clothes off in the garage and go straight to the shower. I felt so bad my faced itched, my hair smelled bad, and then I couldn’t get the smell out of my nose. My place I worked in once again was the focal point of the college because it was the biggest space in campus. My place was used for all sort of events because of its size. We could seat 600 people at a time. Once again I sold cigarettes and more different kinds and a lot more of them because I only had 900 to 1400 students at my old job. At this job, we started out with 3700 students and when we I left, enrollment had climbed to between 12,000 and 14,000.
Smoking became a problem on campus because people would smoke in class and throw their butts on the floor and in the cafeteria. The school stopped smoking in class rooms. It wasn’t too much longer after that the administrators decided to install smoke eaters to try to clean the air. The smoke was so bad, it discolored the tiles in the ceiling, the walls and things that were on the bulletin board. The smoke eaters worked at first, then they didn’t work anymore because maintenance didn’t clean the filters. When they went to clean them the damage to the smoke eaters was done. Then the state passed a law you can’t smoke in state buildings. The students use to go outside on the patio and smoke by the door When the door opened, the smoke would come in and be thick once again. The state passed a law setting a minimum age to purchase cigarettes, I was told I had to card people if they bought cigarettes from me. I tried it but underage students would get older students to buy their smokes. I stopped selling cigarettes that day.
Well the damage had already been done. In 2000, I started to lose weight, had trouble swallowing and a hard time eating, I developed a knot on the side of my neck, which was about the size of half of my fist. I went to my doctor and he said, “You have cancer. There is nothing I can do for you.” He sent me to an ear, nose and throat specialist. The ENT took a biopsy and confirmed it was cancer. He performed an upper endoscopy to look down my throat. It was so bad he put a trach tube in my throat. He was worried the tumor would swell and block my airway. I had a tumor at the base of my tongue and on the left side of my neck. The big tumor was on the right side. When the ENT asked my how many cigarettes I smoked, I told him I didn’t smoke but I worked in a smoke-filled environment for years. He was surprised because they were starting to see a lot more people like me. I stayed in the hospital for two weeks having radiation at 7 a.m., then chemotherapy daily for five days with an infusion running 24 hours a day, and repeating radiation at 5 p.m. The ENT said I only had a 20% chance to survive. Later he told me that it was more like a 5% chance and he thought he was sure he would see my name in the obituaries in 2 weeks.
My treatment continued after my hospital release. My first treatment was at 8 a.m., Monday through Friday. Because I needed so much radiation, they had to break it up into twice a day treatments to give me what I needed. I put on my work clothes every day. My wife asked, “Why are you wearing your work clothes? Aren’t you going to treatment?” I replied, “Yes I am. This is my new job.” Since I don’t drive, I networked and got rides to radiation in the morning. After I left radiation, I went straight for my chemo treatment. Then my wife would pick me up and take me back to radiation at 5 p.m. I went through 5 days of chemotherapy treatment every three weeks for five rounds of treatment. Radiation treatments totaled 63 treatments in 36 days.
About the 34th treatment I told my wife I thought the tumor on the side of my neck was going down and she agreed. When I went in for radiation that night I told the technician I wanted to see the radiologist and why. He took one look at me, measured the tumor, got out the original picture they took a the beginning and said, “Damn, you are right!” That was strange coming from him as he was very religious man and didn’t curse.
Well here it is going on 17 years later and I am still here despite the cancer and the treatment but now the side effects are causing me problems. Chemo attacks everything in your body, so it attacked my eyes and at age 56, I had to have cataract surgery on both eyes. That wasn’t so bad because the eye surgeon fixed my astigmatism which helped me see a little better. I started having trouble with my teeth because of the radiation. The enamel on my teeth was deteriorating so I had to have all my teeth crowned to eat. I then had to have my gallbladder taken out because it had calcified. I had so much radiation that to swallow, I had to take a drink of water to get the food to go down as I had no salivary glands. I started coughing when I ate and food wouldn’t go down. I went to a gastroenterologist and he had to widen my esophagus three times to get me straight. The next shoe to drop was the arteries in my neck. A scan showed that scar tissue had formed and partially blocked them. I take medicine to keep the blood flowing and go once a year to have a scan to monitor them.
The icing on the cake was that my vocal cords were showing signs of paralysis due to nerve damage from the radiation treatments. I was having difficulty breathing. When the cords are paralyzed, they stay in a closed position. To breathe, the cords need to open.
I was referred to a laryngologist. He first treated me with Botox shots. That sounds counterintuitive but the Botox relaxes the cords so they stay in a semi-open position. This allowed me to breathe easier. The first shot worked. Three months later, I had a second shot. About a month later, I started having trouble breathing and continued to lose weight. I had to go to the hospital and testing determined I was aspirating food into my lungs. The doctors put a permanent stoma stent in my neck to facilitate my breathing and a PEG feeding tube in my stomach so I could eat. Eating by mouth was too great of an aspiration risk.
This lengthy back ground on me and how I got to this point and the reason my wife and I want to write this blog. If we can help one or more persons, it will be worth it. I will add that I have had excellent doctors and I have had a good attitude about all of this and did what the doctors told me.
This blog isn’t us trying to tell anyone what to do but share our experiences and give tips to make it easier for someone else and their care giver to live a full and production life with a feeding tube. Anything is possible and you can live the same kind of life with a few adjustments.