Week 5 monday 6/9
Rough weekend trying to get the pain under control and figure out the hydrocodone fog. Was on the couch most of the time sleeping.
Chemo doc today, weight 160, honestly surprised that I kept it on this long. On mostly liquids now. In a bit of a fog but the pain is under control at the moment. Working in the waiting room and taking calls. They sent me down for labs. 7 vials today. White and red blood cell count is too low, so no chemo for you. I do have to get fluids though so hopefully just an hour. The chemo affected the hearing in my left ear.
I downed an ensure between chemo doc and radiation.
Btw, as a weight loss solution, this really works. Better than Ozempic. Obviously you should consult your doctor, as my medical training has been limited to getting a colonoscopy in a van down by the river. Your call…
And I gained a pound to 161 from the ensure at the next appt.
Just fluids today and I was out by 530.
Feeling a bit rough. My couch was calling my name so I crashed for a bit.
Day 2
Rough night, up every hour. I decided to go to work but I really shouldn’t have. I was really off. I got some things done and board prep stuff for next week. Had an ensure for lunch. Felt sick.
Radiation at 2. It took me a couple of times with the mouth numbing solution to get the mouthpiece in. I laid back and when they clamped the mask down, it pushed the mouthpiece in further. I tried to relax. The radiation starts going and right after the 2nd pass, i started to gag and moved the table so the machine stopped. I gathered myself, they asked if i was ok and i gave them a thumbs up… started again and just as the last pass finished, i started to gag again. This time it didn’t stop until the mask was off and I had the mouthpiece out. I looked ok, but that really concerned me.
Picked up Koda and headed home for a couple of calls on PJM capacity markets. You know, as one does after radiation…
Same nightly routine and in bed about 930.
Bad night trying to sleep with the pain spiking and some weird dreams around the pain. Finally asleep around 430 and slept until just after nine. I don’t think I’ve ever slept that late.
Day 3
Working from home today. I feel a bit off. I did get down a smoothie with ensure this morning for breakfast.
I dropped Koda off at 11 to run in for radiation and radiation doc appt.
Radiation with Eric Clapton today. Then radiation doctor. 158 today, blood pressure normal . Talks about getting calories in… si, si… i am aware…
When I first heard about the upcoming treatments and started doing research, I was at 162. A bit of “pregaming” and I got up to 165 before I actually started. … and now we are getting into the hard part… keeping it on.
The doctor says the pain is being caused by infection and swelling not the radiation so going to hit that hard with steroids and antibiotics. Not sure why we didn’t go after this “hard” the first time. They also brought up fentanyl patches next. I have to let them know by Friday if we are shifting gears for the weekend.
They have now also prescribed a human cone of shame to try to help heal and sluff the skin on my neck off as it’s getting very red and irritated. So there’s that.
There are now more than a dozen drugs trying to overcome the side effects of chemo and radiation. And it feels like we are walking a tightrope on which side we are going to fall off.
Same nightly routine… and the cone of shame.
Day 4
Got up at 630 to let Koda out and then back to bed. Surprisingly i woke up at 9 with him looking in my face wondering about breakfast.
I made a 32 oz smoothie with a 350 cal ensure and it took me over an hour to get it down. Several teams meetings and then I jumped in the shower. Off to radiation and pre-gamed that with the oral numbing rinse. They asked what I wanted for music… i said, how about Clapton. I knew immediately after my face was bolted down there was an error in communication… Air Supply.
I did have a pretty big pain spike earlier, but as long as i keep orajel numbing cream going under my tongue and the back of one side of my mouth where the sores are, its been pretty smooth. The steroids and antibiotics may be working.
Worked more until 5 and then became one with the couch. Its been teasing me all day with the side eyes.
I tried to get down some mashed potatoes and tomato soup. Got down a few bites then the mouth started started flaring up… back to ensures… it does become a chore.
Regular bedtime stuff, and you know, the cone.
Day 5
Actually slept better. Sleeping in four hour blocks now.
I have been having a couple of thoughts I thought I would share…
Number one I was hoping I would come out of this process with abs. It doesn’t seem to be working that way it’s coming off everywhere and I’m also losing muscle mass. Am I doing it wrong?
And number two, and I’m not sure if i’m supposed to wait till the last week or if there has to be a spider involved but I was hoping for a superpower from all this radiation. So far the only power that I’m aware of is the ability to shit pinecones and I’m not sure about the costume for that, but I’m pretty sure it would have to have a mask.
Work from the hospital, radiation at 135, then fluids at the chemo place at 230. Should be out around 5. Weight back up a touch to 159, I’ll take it.
I realize that all of this is really… really boring… no pirates, no police chase, not even a friendly talking dog… I wish for some kind of life too, maybe later.
I saw a commercial for a pastrami sandwich and I can’t stop thinking about it now. A burger, a taco, Italian food, anything real actually.
Regular mouth stuff and in bed around 1030, snuggling with my cone.
Day 6
i got up at 6:30 and let Koda out, took my round of meds. He came back in and i laid back down to let the meds do their thing. Koda sleeps either at my feet, over my head or on the bathroom tile. I woke up again with him along my side, peak at the clock it was 9:48. Wow, who knocked me out? Another first.
I have two chemo and eight radiation treatments left. The end is nigh.
Or is it ? Its certainly a thought that goes thru your head.
Day 7
Really rough night, finally fell asleep somewhere around 5 AM. Saliva filling up my mouthful roughly every 15 minutes and had to get up and spit. It was awful.
Oh, and Hapy Father’s Day.
THE NEW NORMAL 