Things continue to go fairly well. I'm getting more tired as the week wears on. I think I spent most of today napping. At least tomorrow is Friday. Then I get a 2-day break from treatment to recouperate.
I have two complaints today.
1. Burning - My mouth feels pretty great (like maybe a 2 on the pain scale) most of the time. But then...as soon as I stick food in my mouth it just starts burning (depending on the food, up to a 6 or 7 on the pain scale). I've tried extra strength tylenol, numbing it, and using a spoon to try to bypass sores. Nothing seems to help. I know I need to eat, so I'm just trying to find high-calorie food I can eat quickly. Yogurt only seems to increase the pain to a 3 or 4, so that works, but isn't a lot of calories. I melted a McDonalds shake for dinner and then gulped it down. That was 750 calories...so a good choice, I suppose. I wish I could find something that didn't hurt so much, though. Even the ensure is super painful. I guess this is my punishment for opting out of the feeding tube.
2. Gagging - My gag reflex is ridiculous. I gagged on the honey on Monday and threw up. I gagged on the oral gel medication Tuesday and threw up. Today I sorta aspirated (went down the wrong pipe) some water, which caused me to gag and then throw up. When it's super hard to eat, throwing up half my calories doesn't help.
From the beginning of all of this I put on 5 lbs, then lost 10.... so right now I'm only -5.... not too bad. On average, even people with feeding tubes lose 20 lbs during treatment. I would hope I wouldn't lose another 10 within the next two weeks, but if it burns to eat and I keep gagging, who knows.
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Jen, you don't know me but I've followed your blog here and there and have been through what you're going through (i'm 26). I had a feeding tube so I give you props for going without. When the burning was overwhelming, one thing I could still somewhat do were creamy soups. Cream of mushroom, clam chowder broth, cream of chicken. It's still not a ton of calories but the saltiness of soup helped sooth the tongue and creaminess added calories. And when I could eat anything, oddly, I could eat a really undercooked filet minot (like, melt in your mouth). I'm not a steak person and never have been. But when it was the only thing I could eat, I wasn't complaining. My major problem was liquids...I couldn't drink water because it burnt so badly. I would try to drink broths. Milk was ok but tasted horrible. Good luck.
ReplyDeleteMan, I hate to hear you're in pain. But my mouth/throat pains from my thrush have gotten a lot worse too. I agree with the previous poster about saltiness. The Dr said swishing with salt water would toughen up the lesions, so I guess it makes sense salty things like cream of mushroom (what I had tonight) would work too. Medium cooked fish didn't hurt too bad today either. Good luck and good spirits!
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