Haven’t posted in a week because there’s really no reason. Things just don’t change. I’m still making lots of thick saliva that I can’t swallow. It’s getting a little less thick, but not manageable yet. I have to take a spit cup with me everywhere I go. And the halitosis? It’s horrendous. Trying to rinse with minty Biotène, but that’s just another thing to remember that I inevitably forget to do. I’m still anemic. Really no change in that. Doc told me to start exercising and hopefully that will help. I’m walking the dog once a day, briskly. I’m going to try to go up to twice, but that’s gonna take some time and dedication. My vitamin D levels are down, so doc told me to take 1000 IU daily. Wednesday and Thursday that worked fine, but after that the capsule gets stuck in my throat and I inevitably throw it up. Today I tried to open one and squeeze the contents out, but it’s fairly small, so I’m not sure how successful I was. I’ll try to swallow it again tomorrow. I still have thrush on my tongue, after weeks of oral fluconazole. Doc told me to stop oral antibiotic and really concentrate on doing the oral Clotrimazole. It’s a tablet that’s supposed to dissolve on your tongue. Now of course since I don’t have normal spit that doesn’t happen, so what I do is dissolve the pill in a small amount of water, then take that in my mouth and keep it in there for 5-15 minutes. It’s the best I can do. I’m also continuing the oral fluconazole which of course the pharmacy ran out of and I’m not getting it till Monday, I hope. I should probably mention to the doc next visit my altered clotrimazole regimen and make sure that’s okay and there isn’t anything better or better suited that we could use. My tongue and throat still hurt. The rest of my mouth feels mostly okay. It’s sore, but not necessarily painful.
I guess the only change is that I started drinking some. I try to take a sip of water pretty regularly to keep my throat moist. I’ve also drank juices, club soda, and 7Up. The fizzy drinks are maybe hurt a little going down, but I don’t know if it’s the fizz or the cold. Cold water is a bit much, so I’m sticking to tap cold or room temp. Not even trying food, since I can’t even get a capsule to glide down my throat. I figure there’s no point until I can truly eat a mostly balanced diet, even if it is made up of potatoes with butter and cheese, pudding, and tomato soup. So I’m still LOVING my PEG tube. Did I mention that I love my PEG tube? The thing is a life saver, and now weeks into use, I don’t feel it at all. I go outside in fitted shirts and a funny tube distention at the bottom of my stomach without a second thought. I’m proud of the damn thing!
The second change is that I went down on the strength of my patch. With the 75 mcg fentanyl I needed a new patch every 2-2.5 days, and now on the 50 mcg it’s closer to 2, and I’ve only had one patch. So I have a good day, then a so-so day, and then a shitty day. That’s today, the shitty day. I’m extremely fatigued, I’m overproducing saliva, and I’m weak like I was so anemic that I need a blood transfusion. I hate days like this. Today, I didn’t even bother getting out of bed, which I hate. I want to be able to spend time with my family and friends, and this healing is not happening fast enough. And I feel like it’s my fault that my oldest is acting up. He’s gotten in trouble at school a couple of times, and he’s full of attitude at home all the time now. And what’s really frustrating is that I can’t even talk to him because I can’t talk! Last night I tried to read a book, and on the 7th word I gagged and had to keep myself from throwing up. Very, very frustrating. So with the patches, I don’t know if I should wean fast and get off the damn drug or just use them every 2 days till I’m eating. It’s a huge dilemma, but I can say that I don’t want to hurt and I certainly hate the fatigue/weak state that lack of lots of fentanyl puts me in. If I stop, is it gonna be 3 days of feeling crappy or 14? If I knew that, I’d probably be more likely to make a decision, but nothing is written in stone and everyone is different. Apparently I’m not a fast healer. Bummer…