Week 6, June 16, 2025
Day 1
I woke up with a very tight throat, a mouthful of saliva and a headache, so good morning.
Work from the hospital. Blood test, 6 vials. Chemo doc 110/75 blood pressure, best since I’ve been coming and 158 so holding steady on the weight – ish.
Radiation was rough, couldn’t get the mouthpiece comfortable. Bleeding when I took it out. Lots of back-and-forth on when exactly my chemo would be tomorrow and they finally settled on 245 instead of 8 AM. That’s good.
Picked up Koda and then fell asleep on the couch when I got home. Got down a yogurt and applesauce and Ensure for dinner off to bed at 9:30.
Pain spiked to 8 1/2. My mouth and throat are on fire. The only thing that seems to help is ice water. So I was up every 30 to 45 minutes drinking ice water overnight.
Day 2
I’m tired, but I have a few meetings to get through today then radiation at 12:45 and chemo at 2:45. Sent a note to the Doc to up my pain meds. No response on mychart so showed up for emergency appt. New meds from the PA, and going to see doc tomorrow for regular appt.
New thrush drugs and increased the Gabapentin. Weight 159, so holding on there. Another radiation doc appt tomorrow to talk about bigger pain meds.
Chemo started at 245… straight to the butthole sparkler, no warning… they really should warn you… just sayin. Hmmm nausea right away, this is new, its usually 1-2 days out.
Got out at 630 and went to pick up more drugs at CVS. Seemed to be a skirmish going on at the drive thru window… lots of yelling from the car in front of me. I shut the engine off so I could hear better. They eventually drove off with I’m assuming was what they ordered. I was feeling bad for the check-out person… until I got to the window… she clearly did not GAF. So I got more for my collection. Over a dozen drugs now.
Thanks again for taking care of Koda, Rene. You’ve been a life saver.
Day 3
I was able to sleep off and on, but now waking up with massive cottonmouth. I guess this is kind of a pick your own adventure game… would you prefer glass shards in your throat or cottonmouth ?
Radiation doc appt. New nurse… took 2 personal calls while looking thru my chart… I almost said, I can wait outside if you want. Very odd. This place is normally so impressive. Weight holding steady at 159.
Saw the doc, he is concerned about the thrush and infection. Upped the antibiotics and the steroids over the next 2 weeks. He did say that thru the process once they start the treatment, they dont really check on progress until 8-10 weeks after its done. Not what I wanted to hear but he said the whole thing keeps “cooking” (my word, not his) after its over. So need to wait until the real end.
Radiation at 330, made it thru, then home and back to work. 5 more left.
A satisfying dinner of ensure, yogurt and a protein drink. None of which I could taste.
Bedtime mouthcare… everything is hurting/burning the right side of my mouth… the thrush thing.
Day 4
Slept on and off in 2 hour stints before needing water with the extreme cottonmouth. Not feeling too bad.
Radiation at 230, viscous lidocaine and orajel for the win. Wasnt too bad this time. Part of that could have been me tired on the table too, almost asleep actually. 4 more to go.
Chemo room for fluids. 159 again, so thats good. They got me in about 30 min early.
Nap when I got home, this thrush infection is really painful in my mouth now. Everywhere there is a sore, all along my tongue on the right side and the back of my gums on the right side behind the teeth. Its hard to get even bland liquids now because of the burn.
1 chemo and 4 radiations to go. I can see the light. Hoping its not a train.
Day 5
Was up every hour trying to recycle the half gallon on fluids they pumped into me yesterday. Mouth feels halfway between burning and glass shards.
Getting fluids down really is an all day thing.
The upside to this whole ordeal is that the roughly $500k face and neck treatment is working.
Radiation at 2 and then back home. More meetings and then I crashed on the couch. Woke up close to 7.
Hmmmm dinner… finally had my first semi-solid food in weeks… oatmeal with sliced banana. I know it doesn’t sound like much, but I’m going to call it a win. I didn’t taste anything, but at least I got it down. Add in a probiotic shot, an Ensure and applesauce and you’ve got the well-rounded meal. I would much prefer a cheeseburger.
3 more radiation and 1 chemo next week.
Day 6
Fluids today, got down some breakfast but they delayed the fluids until 130. No lunch yet. Weight 155. Was out in an hour. feel like a zombie at the moment. Aware of where I am and what I’m doing, but looking thru a bubble at it all. Really tired. Hit the grocery store for a few things. Then home and back on the couch. I’m so ready to feel normal again.
It took me exactly one hour to finish “dinner”… apple sauce, probiotic drink, oat meal with banana, blue berries and strawberries cut very small, ensure 350 cal drink and water… i really want a cheeseburger.
THE NEW NORMAL 