Treatment is going as well as can be expected. Round three of infusions is now done.
The down side is that I’ve contracted a mix of GI Tract and Oral Mucositis, which, just downright sucks. I’m producing a ton of mucus in my digestive tract, which I’m constantly coughing up, and also have sores on the inside of my mouth, mostly on my tongue and at the back of my throat, which are painful. I’ve got morphine for the pain but I’m trying to use it sparingly. I’m getting no sleep with the constant flow of mucus and saliva so sleep deprivation is definitely a concern. My taste buds are almost nonexistent at this point.
My life now consists of a strict regimen of coughing up mucus, washing out my mouth with a mix of salt water and baking soda, brushing my teeth, wash out mouth again, coat mouth with a wetting gel, clean up bath tub of all the mucus I hocked up, try to cat-nap before doing it all again. Somewhere in there I make time for some diarrhea. I don’t think this is gonna get better before the next round and my either delay treatment of prolong the amount of time I need to recover.
It is also said to be, in cases like mine, that the oral mucositis can be attributed as much to bad oral hygiene as it is the chemo, so there’s that extra slap to the face as well.
Don’t look up a detailed description if you want to keep your lunch.
Right now my happiness is found in home made fruit smoothies that my wife has been freezing up for me. Low acid fruits and the freezing temperature make for a soothing treat.
If the mucositis (man, the word itself is just awful, isn’t it?) doesn’t play nice then I may have to put in for long-term disability to make sure that I have adequate time to recover. Which is unfortunate because I don’t like being away from my peeps for this long 😉
And the neuropathy appears to still be here. It took waaaaaaay to long to write this.
Hair loss is in full swing. My head is the worst. It got very patchy and had to be shaved down again. The rest of my body is actually thinning out nicely and not getting patchy. Its kinda weird how that’s going.
Today another week of infusions start. I can’t say that I’m looking forward to it. I don’t think a day by day is necessary for this round. I think every day is gonna be shitty. I started to feel a bit icky at the end of last week, but that might have been psychosomatic or possibly me just being worn out a bit from my Sister and Mother coming out for a visit. I much appreciated having some time to just hang out with them but 4 days ended up being a bit much.
I miss my brain. Chemo brain seems to have taken a pretty good hold on me. I have little attention span and motivation to do things wanes quickly. It is frustrating as hell because I can wake up one day excited that I feel like doing something and a few hours later I just wanna go back to bed. I’m not too bad if I force myself to go out in the world and just take a walk, or go out to dinner, but my brain tires quicker than by body and I’m ready to go home before I’d like. I think this is the part that I hate the most. Feeling like an invalid. Not feeling like I can overcome the desire to just flop down instead of going outside (granted the cold weather hasn’t helped).
Andy joked that we only had 15 days of chemo left. I don’t think that I can count the days. Even if I break it down to “only 5 days left in this round” because the effects go on for so much longer. I’m just teasing myself to think that I’m free after day 5. I can’t think of a good way to look forward and find something good to use as motivation other than to think that at this time next year this will be a (hopefully) distant memory, and to be grateful that I’m lucky that I’ll likely be done with this for good after its all done.
Okay, that’s enough woe for now.
Update: it turns out that my feeling a bit icky is probably due to my white blood cell count being VERY low. We are now on heightened watch to keep everything clean and to keep me away from germs. Yay?
I started to lose hair this week. Its coming out in clumps. Not everywhere, mostly my face and my ass. I finally trimmed back the goatee because it was getting a bit gross losing long hairs all over the place. That and my skin hurts a bit (I don’t know if that’s normal or not).
I didn’t think that it would effect me that much when it started happening, but something is going on between my ears, I just can’t pinpoint what I’m feeling. Maybe the last, unavoidable, step of reality on the situation is here. One more thing out of my control that I just have to deal with.
I’m just now getting back to feeling how I felt on Thursday: nauseated, tired and creaky. I finally pooped. Between the stool softeners, the Ex-Lax and the Lactulose I finally got rid of the contents of my bowels. It wasn’t pretty, though because of all the weird shit I’d been taking to get ’em moving it didn’t smell or feel like poop at all. Go figure.
I’ve only puked once. Thankfully. But it was a 30 minute ordeal that produced nothing but chemical-smelling, putrid, yellow bile. I unfortunately hit the bathroom floor with some of it so Andy had to clean that up. She had to hit it Comet to get the smell out.
Every joint in my body is complaining. My sinuses are dripping like faucets. There’s a headache back there waiting to pounce at any minute. I don’t sleep through the night because I’ve been laying down so much I can’t stay in any one position for very long. I’ve been sleeping so much I’m starting to get very odd dreams. The neuropathy is making my entire body tingle.
I’m hoping today is the turning point where I start to feel better (until next round, of course). I don’t smell the chemicals on my breath or in my sweat any more. I’m looking forward to getting outside and going for a walk.
Sometimes I can eat. Most times not. Even water tastes bad and unfortunately I’m probably dehydrating myself a bit. Those times that I have eaten I have unfortunately been way too eager and upset my tummy with how much I took in. I need to look at everything in half portions for a while.
The two high points I have in my day are the way that Andy is hanging in there and brushing my teeth (seriously). Andy has been wonderful. She’s taking everything in stride and not getting visibly frustrated with my ever changing whimsy. I’m not sure how I’ll repay her after this. I’m sure whatever I do it won’t be enough.