So, today should have been my second day of round 4 of chemo, my final round. But that is not to be. I was hospitalized on Sunday night with some kind of infection that was giving me strep-like symptoms: 101º fever, sore throat, sore ear, and the inability to swallow.
After feeling bad for a few days, but not feeling horrible, everything got worse on Saturday night. We went to the ER about 2am after I’d tried, to no avail, to use morphine to ease the pain. I was admitted around 3:30 am and spent the night. Since we were waiting on bacterial cultures to figure out what was going on I stayed Sunday night as well.
I got little rest while there. Despite needing to be at the hospital to get better the amount of traffic in and out of my room to ask questions, administer more drugs, ask me what I want to eat, just check in, etc… it was impossible to rest. Add to that the fact that hospital beds are the least comfortable surface in the world and that the food is impossible to eat I felt like I was doomed to get worse.
It was a relief to be discharged. Though the infection was never positively identified I was sent on my way with massive antibiotic pills (125mg pills – surprisingly they go down rather easy). We dodged the exit crew and I was able to walk out instead of being carted out in a wheel chair. I hope that didn’t get anyone in trouble.
Last night I gained a new found appreciation for sleeping in my own bed. I normally can sleep anywhere and be fine but never before have I been so grateful for my own bed. My own pillow. And nobody checking in on me every 3 hours. That hospital bed made every part of me sore.
Did I mention that the hospital food was terrible? Blech…
Words of Wisdom
If you ever find yourself in the hospital do yourself a favor and ask about every drug they give you and why they’re giving it to you. I was accidentally given a drug that I wasn’t supposed to get. Fortunately for me it was just a blood thinner. I guess there was another patient with the same or possibly a very similar name that the nurse got us confused. She rattled off the drugs she was gonna give me, and I did notice that this was a drug that I’d not had before and asked her what it was for. She told me what it was but it didn’t sound terribly out in left field so I just accepted it and let her carry on. Maybe being half asleep at the time didn’t help.
Lesson learned, though. Ask about each drug and WHY you’re getting it. Shit happens.
What getting this infection has unfortunately done is set by my treatment by a week. Now that puts me squarely in to long term disability. That means more paperwork and more time away from mah peeps. I had been noodling with the idea that I might take a little longer on the recovery side but was stuck on the need to jump through hoops for the long term disability, but now that the long term is a certainty that decision has been made a bit easier. 3 weeks away from my last treatment and I still have mucositis and need a mid-day nap. I’ll be in no condition to return to work once my treatment schedule officially ends.
I feel a bit guilty staying away longer knowing that I’m holding up some organizational changes at work, but at the same time I need to be 100% for those changes. I’m gonna have a hard enough time getting back in to the fold as it is. I shouldn’t try to do it with half a brain.
I passed the 4 year mark at Twilio back on June 20. I meant to make more of a hubbub about it but to be honest I let is slip by. I done forgot. But there it is. 4 years.
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.