I'm just about finished with 3 weeks of the 7 weeks of treatment I've got scheduled.
I skipped writing about it for a week because I'm trying to keep this as positive as possible. There wasn't anything positive last week. The bad stuff started building up quick and that left me with a pretty negative outlook.
Now that I'm getting used to things getting worse (going to hell in a hand basket is more accurate), let me catch you up on what's going on.
Sore throat - I thought maybe I'd get lucky and get a mildly sore throat. Nope. They didn't lie about not being able to swallow water either. I'm not there yet, but if the rate of increasing soreness continues, it's only a matter of time and certainly less time than the 4 weeks of treatments I have remaining.
Sore mouth - It hurts to eat catsup. There's enough vinegar in catsup that the acid in the vinegar touches the sore spots in my mouth and creates a burning sensation. Orange juice - you've got to be kidding. I'm starting to have trouble with orange-flavored toothpaste. The 20 or so places in my mouth and throat where I had little cuts for biopsies are all very sore.
Loss of taste - I have two taste sensations: 1) Nothing. 2) Burning. One odd thing I've noticed - I can still taste pancakes. I can't taste the butter or the syrup, but I can taste the pancakes.
Loss of appetite/digestive function - I'm almost never hungry. When I eat, I fill up quickly and stay full for a long time. It takes me about an hour to eat a typical meal and I am stuffed from that for at least 6 hours.
My diet - I try to get about 1,000 calories a day from "normal" food. My "normal" food is pudding, mac-n-cheese, yogurt, wienies, refried beans, vegetables in sauces, homemade applesauce, pumpkin pie - I think you get the idea here. Then I try to get about 500 calories a day from formula that's normally used with feeding tubes. An 8-oz can of that stuff has 250 calories and LOTS of nutritional goodies. Even with no working taste buds, I can tell that stuff is on the nasty side.
Acetaminophen dulls the pain in my throat enough to get rid of the constant stabbing and burning sensation I was having last week. The PM variety seems to help me get to sleep, so I'm successfully getting sway from the narcotic and more addictive medications I had found effective in those areas.
The end of this week (June 19) is one day past the half-way point of my treatments.
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2 comments:
Well, be as positive as you can, but, hey, you don't need to spin anything for these posts. It may not pleasant to read, but it's not like we are the ones going through all this crap. Reality is good, and your sense of dark humor always comes through anyway.
Makes me think of the old SNL skit, "First He Cries," where Bill Murray gets more upset than Gilda Radner (who just happens to be the one getting a mastectomy). :)
You're remarkably brave. I'd be downing every narcotic I could get and keep myself pasted until the end of these treatments. How could withdrawal from painkillers be any worse than what you've already gone through?
Marlowe takes 8 legally prescribed Lortabs every day for the arthritis in his knees. Unless he goes through knee replacement surgery, which he is putting off as long as possible, his doctor will give him narcotics.
I think we live in a society that is so afraid of drug abuse that we allow people to live in unnecessary pain. Get the good stuff, Merlin! You can be weened off slowly and it won't hurt a bit!
Also, you worry me when you don't ramble. I figure either you're feeling really good and you're out taking parachute lessons, or things have gone south and you're unable to blog. Write when you can, dear, you do have an audience!
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