WEEK 10 + CHRISTMAS + PET SCAN

October seemed like we were stuck in slow motion and November and December have flown by. I have mixed emotions regarding the next six months. On one hand, I want them to fly by so that we can get beyond this and I also want to slow it down because it's Bella's last 6 months of high school. I guess the solution is just to live in the moment and be intentional with the time that we have. Time is going to do it's own thing, marching on minute by minute, day by day, month by month.

Thursday night Eli watched the Charger game on the couch with us and then went on a freedom drive by himself, windows down, music up, the last night of feeling normal for a few days. I realized the other day that he won't be able to drive for a long time after surgery while he recovers and adjusts to the new hardware in his gas pedal leg. He had started to get a little bit of a headache again after the MTX treatment, but not as bad as the previous week so he took some meds Thursday night.

Friday morning came early, followed by a somber ride 10 minutes down the road to clinic and we were there. I'm grateful that we live so close. It makes it convenient to not have to wake up earlier for drive time and we can run home and back, as needed. I'm also grateful that we haven't had a particularly wet winter and aren't having to navigate driveways and parking lots with snow and slippery conditions. 

Counts were good on Friday - platelets 177; neutrophils 3830, up from 690 the week before. We got settled in and I grabbed some lunch. 

One of the hardest mental parts of treatment is the transition between arriving and feeling good, beginning fluids and then starting the chemo that inevitably is going to make him feel awful a few hours later. He's been facing feeling disgusting the last few MTX treatments and he got all the nausea meds again that kicked in late evening and he was able to sleep. 

Saturday he got up and went for a walk with the physical therapist to try out a cane, instead of using the crutch. He liked this much better and we got one ordered for him and delivered to the hospital. He really wants a pimp cane, but insurance doesn't cover those. He wasn't too hungry Saturday during the day and snacked on some fruit late evening and some french fries. He fell asleep and slept well. 

I passed the time by catching up on some work stuff most of Saturday and making some lipgloss keychain gifts for the nurses. 

Saturday night I traded places with Richard and went home and wrapped some gifts. Eli's MTX level was 2.19 after 24 hrs, which is the fastest he's cleared yet. I didn't want to get my hopes up that his levels would be low enough to leave any earlier than we are used to. The headache that he had earlier this week never really went away so we tried some meds and some Tylenol Sunday morning. It helped a little. He didn't have an appetite on Sunday at all, and usually he does.

Sunday levels were the lowest we've seen after 48 hours coming in at a .22! He's been battling some more nausea this time around and I think that some of it is being caused by anxiety. He is now getting anticipatory anxiety when we come to clinic, anxious when he knows we are going to be admitted, anxious for the next few months. Wondering how he is going to continue to come back and knowing that he doesn't have a choice is at the forefront of his mind. 

We redrew labs 24 hours later and he was at .11 - so close! They were hoping to get us out of there and ordered a redraw again at 10pm. The results take an average of about an hour to process, something about waiting for the blood to coagulate. He was closer, but .10 wouldn't be enough to show us the door. One more night in the hospital.

Labs were drawn again at 6:00am on Tuesday morning (Christmas Eve Day) and he was low enough (.08!) to go home. We wished our nurses a Merry Christmas as we ran passed the nurse's station. Once home, he bathed and spent some time on the couch, watching Elf and napping. Richard made tamales. I made cinnamon rolls so Eli could have one on Christmas Eve, since he couldn't eat any fun stuff on Christmas Day (day before the PET Scan = no sugar, carbs, starch, etc.). He finally got his appetite back after not eating for two days and ate a tamale and 1/2 a cinnamon roll.

His headache has been bad all week. The kids woke up around 9:30 Christmas morning and we enjoyed a relatively quiet and low-key Christmas this year. Put on a couple more movies, Eli played some video games with friends, took a nap, ate dinner, we played a board game and went to sleep.

Thursday we had an early appointment in Meridian for the PET Scan. I am grateful that this got moved locally due to a cancellation. Otherwise, we were going to road trip to Twin Falls, a two-hour drive and not something that Eli was looking forward to. Scan was completed and results were returned pretty quick and loaded into his chart. I popped in to the records office and got the images burned on to a CD. The report shows a decrease in metabolic activity in the tumor. We will know more once the report is interpreted by Eli's team, but the chemo is working.

For the PET scan, FDG (fluorodeoxyglucose), the radioactive sugar tracer, is injected andmetabolized similarly to glucose, being transported into cells, but unlike glucose, it cannot be further metabolized and becomes trapped within the cell, allowing the PET scanner to detect areas with high glucose uptake, which is often indicative of cancerous tissue due to its increased metabolic activity. Eli's tumor had an SUV uptake of 8.8 of the FDG on the initial scans in October, before treatment. Yesterday the uptake had decreased to 2.7. That's a pretty good decrease! I don't think we will truly know the necrosis percentage until after the tumor is resected (removed). 

We got lunch at The Habit after because Eli was hungry. Without going into too much detail, it didn't sit well. Poor dude.

He felt better when he got home and made plans to hang out with Riley, who really seems to get him out of any funkiness he might be feeling. 

Today we have a clinic appointment and then CT and MRI scans. Surgery is planned for 2 weeks from yesterday. I hope he enjoys these last few days of 2024, the year our world got flip-turned upside down. The beginning of 2025 is going to be a challenge, but once we get over the biggest hurdle, it's going to be so many steps in the right direction and the beginning of a new path forward.