Today, Dec 4th, I’m two days into the third week after. According to the stats, this week is when things should start turning around, i.e., repair and growth. If a couple of nuggets I’ve been looking for having been talking and eating, I’ve been able to do both in the past few days, although both demanding payment.
Rigorous gargling and washing the mouth with saline solution has enabled me to begin talking, albeit carefully, for at least a few minutes at a time. A little too much talking and I’ve got to stop and rinse my mouth out as the burn/mucus attack comes on very quickly. Similarly, I’ve been able to drink down protein shakes by mouth, although depending on the type, I need to be able to rinse my mouth and gargle between long sips to stave off the burns. Sometimes, after the first few sips, the throat burns come on in a furry and I’ve got to run to the bathroom with the gargle solution.
So the nuggets come at a cost, but I know it’s only a temporary price to pay and that soon, the price will pay off.
I just picked up People magazine yesterday because Michael Douglas is on the cover talking about his fight with cancer. The article is shallow (surprise), but it does say that he did this without a feeding tube. How, I can’t understand. He’s a better man than I am. I could never have. The amount of ulcers in my mouth too great. It also said that, according to a source, that the entire month after radiation stopped was “hell.” I’m in my third week after and things are definitely starting to turn the corner. Could still be classified as hell.
I want to be able to travel over the holidays so when to remove the feeding tube is the question. I made an appointment for Dec 9th to talk to the doctor about deciding on the date. There is no problem traveling with the tube. The issue is how much I’ll be using it. I need to be able to sustain my weight through my mouth to be able to take the tube out. The last few days it’s been about 1/3 without 2/3 with (tube). My goal over the next week is to switch that ratio.
Very good friends of mine from California came to visit me from San Jose these past days. It was soooo nice of them. We hooked up a couple of times and it was so nice to catch up after so many years. I was able to share a couple of hot teas and a Starbucks soy milk hot chocolate. They understood that while walking with them around New York, I kept my little side bag with mouth wash and spit cup. In between short conversations, my mouth is usually full of rinse.
The toughest thing about walking around NY is looking at so much good looking food. Ouch. I can’t touch any of it. Yet. It’s the ultimate in patience.