Friday, January 16, 2009

oral cancer. My personal journey

I felt nauseated for most of the day yesterday. I think that it was caused by the formula that I take through my tube. I have been taking two cans at a time, every few hours. There are 355 calories in each can and I need 2500 calories a day to maintain my weight. I took two cans at 8:30 AM and two more at noon. I started to feel badly after the noon feeding. I have been taking Prilosec every day also but haven't taken any of that in the last two days. Maybe that is the problem. I just don't know. Maybe that is just the way it's going to be for the next few weeks. Perhaps it's all just part of the treatment. Some days I feel wondefrul. Other days I feel like crap!
I said in a previous blog that I would include a summary of my entire treatment and will include that now.

ORAL CANCER. MY PERSONAL JOURNEY

I was diagnosed with cancer at the base of my tongue and in one lymph gland back in Oct. of this year. The treatment for this kind of cancer is thirty seven radiation treatments and three large doses of chemo spread over a seven week period. Treatment began on Nov. 4th. A mask was designed to fit my head. This mask allowed no room for movement and was attached securely to the treatment table. It is a claustrophobic experience at first. The machine that delivers the radiation passed in an arc over my head. It stopped in six different positions and the whole procedure took about thirty minutes. The nurses have a large selection of music and will play what ever kind of music is desired. This helped me relax.
I was told that my throat would possibly get too sore for me to swallow, and that my taste buds would be affected which would alter my taste. It was strongly suggested that I have a feeding tube placed in my stomach which I did. That procedure wasn’t much fun either.
The chemo was administered in three large doses. The first dose was given just before the first radiation treatment. Subsequent doses came at approx. two week intervals. The chemo hit me hard. Some programs administer the chemo A little each week and folks don’t get sick from it. My doctor said that they have found that the best thing for my type and location of cancer was three large doses spread evenly over the course of the radiation treatments. The first chemo treatment made me very sick for about five days. The second round made me sick for about eight days. I am still not completely over the lingering nausea from the last treatment and the residual effects of the radiation and it has been about eighteen days.
The complications caused by all of this were annoying and in some cases severe. I was told that I must be scrupulous with my dental care. I would have little to no saliva to protect my teeth. My saliva glands would be knocked out of condition for several weeks and one of them may not come back at all. I would have to brush and floss often and would need to brush my teeth with a special fortified tooth paste each night before bed, after which I could not rinse. This was uncomfortable. My ears are plugged with fluid. I am taking steroids at this time for this condition. They are not working. I will have to have tubes put in each ear. Constipation was severe and drastic methods had to be used. Food tastes awful. With no taste buds one would think that there would be no taste, but that is not the case. Eating presents a real challenge. Most of my feeding is done through the stomach tube. I have become proficient at doing it myself. I need 2500 calories a day to maintain my weight. I am struggling to do that. The chemo doctor said that the average weight loss for someone with my type of cancer was forty pounds. That scared me and I have held my loss to about eight pounds. I have lost a few more pounds over the last few days because I have gotten behind on my feedings. Once I do that it is hard to catch up. I will be more diligent from now on.
The last radiation treatment was administered on Dec 24th. The effects from the chemo started to wear off on the second or third of Jan. I am feeling better as time moves on. I want to get back to my normal life but don’t have the energy to do a lot yet. Getting over this is not like getting over the flu where you get better each day. It is much slower.
Actually, according to my doctors, I did extremely well. They joked about making me their poster child. The radiation makes some folks throats so sore that morphine must be used. My throat was treatable with Motrin on most occasions. I did have to use Vicodin on a few occasions. Some folks lose their ability to swallow and have to go through therapy to relearn how. I did not. Some folks lose lots of weight.( the avg. weight loss is forty pounds as I said earlier.) I lost eight pounds. The doctors said that It was because of my positive attitude. That may have contributed but I say that it was because of all of the caring people who were praying for me. I truly believe that prayer made the real difference
Anyway, I am recovering. I am looking forward to a normal life again. I just need patience which I have always had in very limited supply.

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