It is odd what can become “normal”
Week 7, Day 1, Monday June 23
I tried something different last night for dinner. I thought well spaghetti is soft so maybe that will work. I got it all done and the noodles were fine but my mouth and throat could not bear the spaghetti sauce. Maybe just the noodles and olive oil next time. I tried. Back to ensure and yogurt.
I was up every 15-30 minutes last night between needing water because my mouth and throat were tightening up and feeling like glass. So tired.
Hearing test at 8 am, dropped off Koda at pre-school. Hearing is back to what it was when I started. Still have a ringing, not sure if that is from chemo or if it was there before.
Blood test, the computer system went down and it was a bit crazy. They got it under control and started moving the cattle through. 30 min later and 2 vials, then headed to the cafeteria to catchup with work.
Walked over to radiation to get a new check in card then back up for chemo doc appt. Blood pressure 124/70 and heart rate 68, low for me. And down to 154. Ugh
Assuming blood work comes back in range, last chemo is tomorrow.
Ran home with almost 2 hours between appts. On the way back, there was a black SUV that was doing 60 in a 60 zone. I could not believe how inconsiderate… Ugh… once I could get around him, I set the cruise back on 85… and his lights came on a couple of times, then he turned them off again. I tip my hat to you kind sir for your discretion.
Back at the hospital, because of the computer issues this am, they are way backed up in every department. Usually there are 3-4 people waiting for radiation. Now more than a dozen… and all gaggling like geese. This might be worse than the radiation. Definitely worse than the radiation…
2 hours behind and I finally got in. These last sessions seem to be getting longer.
Picked up Koda and got home around 530. Had to finish up some work that popped up and is due today for the board, so…
Exhausted. Fed the boy and did what I could to get some calories down. Laid on the couch but couldn’t sleep.
Off to bed at 930. Same scenario except longer 45-75 min breaks to try to sleep. Slowly getting used to dry mouth maybe ? No idea, but I must be starting to get dehydrated because no peeing. You’re welcome.
Day 2
Koda got me up at 630 to pee. It was time. Fed him and jumped in the shower, going to be meetings all morning.
Got thru some meetings explaining how trading works to one group and how in and out of the money options work with hedging to another, so uneventful.
Off to radiation. This one took awhile and I started gagging in the mask. I finally calmed down but that is about as uncomfortable as I ever want to be.
Chemo at 4. No sparklers today. Not sure if i should be disappointed or happy… but then nooooo… delayed effect today… there you are my little friend…
Home around 8
Thanks again, Rene for picking up Koda for me. I could not do this without you.
Day 3
Another rough night, ran out of hydrocodone yesterday morning and only have Gabapentin. The md anderson mychart response time is very slow. Will have to sort out pain meds at radiation doc appt today.
Mettings until noon and then dropped off the boy at daycare on the way to the hospital.
Made it to the appointment and mainly talked about the pain. Doctor says it is still being caused by thrush which has moved up into my mouth instead of my throat earlier. So he prescribed more hydrocodone and a new mouthwash.
Back home in time to pick up the boy and take a few calls and then made myself one with the couch.
The CVS was out of hydrocodone so Stacey ran into the pharmacy at the hospital. Again could not be doing this without her. Koda will be happy to see her. And me too. I need to get the pain under control. Its constant at around 6 or 7 and I cant get away from it. For reference, I told the doctor that I consider cutting off my arm a 10, on the 1-10 scale. He laughed but I said, isnt that what we are supposed to be gauging this against for a 10 ? At any rate, its intense.
Today was the last of 33 radiation treatments. Yesterday was the last of the chemo and have fluids tomorrow and on Saturday and then go into the prolonged cooking stage and then start turning the corner starting in about a week ? More ? Don’t quite know.
Pain finally back to a 4-ish so manageable.
I feel great at the moment… I’m sure part of it is the drugs and I’m also sure that part of it is the euphoria of realizing I’m past this stage.
Day 4 head fake
Slept off and on in roughly 1 hour blips. Mostly just cold water and ice to cool my dry mouth. Woke up with Koda on my head.
I got down an ensure and a probiotics shot for breakfast. Lots of water trying to get it down. Throat very scratchy. Worked in the morning before leaving for fluids at the hospital. Weight down to 153.5, but other vitals good. Hopefully this is the bottom for the weight. More work while getting fluids… as one does…
Then home and back working… project execution call… are they going to be on time ? Do we hedge or wait ? Then hedge effectiveness… are these hedges working as expected ? In this market, yes… you get it…
More just trying to get calories in as the pain in my throat and mouth will allow. They are going down but it is a long process. I do have to give myself some patience right now.
I’m dragging. My brain says its over for this part, but the process isnt really and the hangover effect from this thing just sucks.
Day 5
Back to reality. No treatments today… feels like a Sunday. Woke to my mouth dried shut. Had to peel it open. Ugh. I took a handful of drugs. Same thing this am trying to get calories in. Mouth and throat slow down the process because it still feels like lava.
A drink of ensure followed by a drink or two of ice water and then wait and then do it again. Breakfast takes over an hour.
Back-and-forth between meetings in the office and the couch for a quick naps.
Really groggy today, I feel lightheaded.
After work, another nap, watched a movie that Stacey picked. It was awful, then off to bed.
Day 6
Woke up, feeling marginally better. I am able to take a bite of yogurt. And not have to follow up immediately with cold water. So that’s the kind of a wins that we’re looking at over the next couple of weeks. Not big but incremental and as I’m seeing there will be ups and downs.
I realized I was still pretty lightheaded so laid-back on the couch and slept until almost noon. I got up and took a shower so that I could feel human and decided to go grocery shopping. That was a bad idea. My vision kept closing down and then slowly opening back up. Pretty sure I should not be driving but i made it home. I had fluids scheduled today, but there was no way I was going to make it, so skipped it.
Put away the groceries. I laid back on the couch and slept again.
Groggy all day, so weird. I thought I was fine this morning.
I did manage to get down three mini pancakes with yogurt, so almost real food.
This is more up and downs than I expected.
Day 7
Another day of feeling groggy. Tired and a bit out of it. Slowly burning thru the meds… last of the steroids. Now down to only 9. I definitely wont be trying to drive again today. I did manage to get down 10 mini pancakes with peanut butter and didnt have to follow up with cold water drinks for each bite. Mouth still on a slow burn though.
I think I’m going to need a hold the couch down again today.
Well that was short lived… mouth is on fire again around lunch time and requiring ice water sips to get the ensure down. Ugh…
I’m ready for the roller coaster to stop
THE NEW NORMAL 