So last night, I was cramping really bad from the battle between the two meds for nausea and constipation. I couldn’t get comfortable laying on the couch. Stacey said, “Are you OK?”, as I was making noise and grimacing. I said, “I’m only a 3 cm. It hurts. I hope it looks like me.” I wish that wasn’t true but it is 100% exactly what I said.
So new week, new issues… now the radiation is causing a burn mark on my neck. Its itchy and sore much like a sunburn. Oh and finally had a bowel movement… ever crapped a pine cone ? Yeah… not quite as fun as it sounds.
Anyway, so streaming thoughts, here… when you can’t taste much there are no treats. Not wine, not gummy bears, not even rainbow sherbet. I cannot tell you how disappointing it is… wait, yes I can… it sucks.
Woke around 1 am, pain level at 5… broken glass in my throat, neck on fire, mouth hurts… Tylenol, Gabapetin and Traminol, numbing mouthwash and aloe on my neck. It took about an hour, but it calmed back down to a 2.
Week 3 Day 1 5/27/2025 Tuesday because of Memorial Day
Had a so-so night, mostly slept but my throat is sore and scratchy. Voice is very scratchy.
Off to work. Had a call with chemo doc. Told him my concerns about how the side effects are progressing faster than I expected and unsure how the final weeks will look based on where we are right now. Talked about the timing of nausea after the chemo and it was delayed this time until late tTursday, early Friday. He said he will adjust the delayed nausea drip during chemo today. The other side effects are the radiation doc’s fault (his words) and I speak with him tomorrow.
Blood test, 4 vials this time, then some kind of mouth rinse testing for immunology… just in case this treatment isnt effective… scary thought…
Radiation at 220, I had a hard time with the mouthpiece today because my jaw hurts. I finally got settled and laid back and when they put the mask on, they jammed the mouthpiece further into my throat and I started gagging so they let me back up. It took a minute, but I got settled and laid back down and they put the mask back on.
Chemo now at 4:30. I put on 2 pounds up to 167. Pretty sure gaining weight isn’t supposed to be a thing during cancer treatment. Everything else normal. They upped one of the nausea meds because last week was a little difficult. They did add the steroid back in as well so we got the sparkler effect. I think I’m liking it now. Dont judge…
It doesn’t matter how old you are, your mother will still be your mother. She still calls daily to check on me. Its sweet. She always asks if there’s anything she can do and I suggest she cut my grass or wash my car. She always declines so it feels like it’s a bit disingenuous. I’m not sure how to take that.
Day 2
So I just saw the radiation doctor and apparently I’ve developed a condition called thrush, which is essentially a yeast infection in the throat that causes both redness inside and outside the throat and the pain. I got some meds to bring it back down. He said that he suspected Thrush was the cause of the early pain spike. He said to up the Gabapettin to 4x a day if things escalate and back on Tramidol. Weight back to 165, the temporary gain must have just been constipation. That’s not a word you use in conversation very often and it feels like my duty (pun intended) to bring it back.
Radiation at 220 today. I have a sore developing on my tongue that made it difficult to get the mouthpiece in. That sore is being irritated by my teeth and its making it tough to talk. Developing a bit of a lisp.
Picked up the pup on the way home. Really tired so flopped onto the couch. 2 hours later and Koda is waking me up to feed him.
Regular nighttime oral care and off to bed. I did get a humidifier, it’s supposed to help putting water in the air so that when you breathe, you get some moisture in your throat.
Day 3
Dehumidifier must’ve worked somehow because I only had to get up twice to get water or saliva rinse during the night.
So this thrush medication comes as two different liquids and they look very much the same so I read the directions on the first one and it said swish and swallow so I did that. Then I assumed since they looked the same, same thing only a little bit more liquid this time. After, I went back and read the directions and the second one said swish and spit. That was awful.
This has become an interesting balance between pain, nausea, constipation or not, general tiredness… is that a word ?, work and life in general. Feels like life in general is taking a back seat at the moment, but plenty of time for hopefully a short derail. With all this shit going on, I just know there’s a pony in here somewhere… old joke.
Radiation today at 11 and this time I brought lidocaine mouthwash to hopefully help with the sore in my mouth and the mouthpiece. It did work somewhat but I think I need to take it a little sooner. I forgot to mention that yesterday they left the music on in the room for the person before me. It was a bluegrass band singing Sweet Child O Mine… so much no. I did not care for it even a little bit. They changed it today. Back to work.
Got home and laid down on the couch, two hours later up and fed the dog and dinner.
Regular healthcare stuff and off to bed. Sleep is getting weird. every one and a half to two hours I have to get up to drink water or put artificial saliva in my mouth. It gets very dry and wakes me up so there’s that all night.
Day 4
I woke up this morning and spit out what appeared to be several blood clots or stuff sluffing off somehow from my mouth. It was fairly gross.
Wasn’t feeling that well so decided to work from home today. Feeling really sluggish. I drove in for radiation and when I got back right into another meeting. By four I was exhausted and the couch was calling my name. A two hour nap later and I woke up seemingly as exhausted as when I laid down.
Eating dinner tonight I realize that I can’t taste anything. And I’m just putting food in my mouth for the calories. So much color from the world missing.
Day 5 Saturday
Radiation today because of the holiday on Monday. Stacey came with me. I went in the back and Stacey sat outside. When I came out, she said “Is it over ? That was quick”, … sure for someone that’s not getting their face bolted down to a table… this is why people don’t invite you to their radiation treatments… Ran some errands and then crashed on the couch exhausted.
So here’s a side effect i had not read about yet… everywhere that the proton beam hits or is close to will become hairless, at least for some amount of time. So along my neck, jawline and roughly mid-way up my cheeks… very weird when I noticed it all very thin. So no more cancer beard.
Today we are 3 chemo and 15 radiation treatments in. Almost halfway. The current schedule is for 7 rounds of chemo and 33 rounds of radiation. So more to look forward to.
THE NEW NORMAL 