BACK-TO-BACK MTX WEEKENDS

Most people look forward to Fridays. We are no longer most people. At least on some weeks. 

I woke up on Monday feeling like the countdown was on and the clock had begun ticking for the week. Instead of feeling relief with each passing day, I just felt dread. Dread that we were one day closer to Friday. On Monday and Tuesday I tried to get the tree decorated, but nothing feels normal and it had been sitting naked in the living room for weeks. I put some Christmas music on and slowly but surely got her all trimmed up. Nothing that a little John Denver's Rocky Mountain Christmas album couldn't fix! 

"Please Daddy (Don't Get Drunk This Christmas"* is a highly underrated Christmas song.
*Disclaimer: not based on real life events.

Our Christmas ornaments are my favorite because they are a collection of mementos from family trips and memories of the past. I am particularly fond of the ones that the kids have made at school throughout the years. As I hung each one on its chosen branch, I tried to reflect on each one, where we got them, what trip they commemorate, who gave us the special ones, how we collected them. I thought about who else might have a glittery Space Needle replica from Seattle, if anyone collected sand in a mini mason jar from Melbourne Beach, FL, who picked up a sugar skull from Old Town San Diego or brought home a fabric Scottish bagpiper from Scotland. Our Christmas tree is a history of us. When the kids were little we used to make crystal ornaments from pipe cleaners suspended in hot water and borax solution. I still have all of their little salt dough ornaments with their imperfect paint jobs, which are perfect to me.

Eli wanted to attend some classes on Thursday before school lets out for winter break. I was a little worried about low counts, but he wanted to go to a special Christmas lunch at Gamma's house and from there he attended his 5th and 7th period classes and stayed for baseball practice. He came home and reported that he had a really good day. I was glad that he convinced me to let him go. I think it was a little hard to be reminded of what used to be and how much his life has changed in a short couple of months. He would give anything to rewind. We have enrolled in online school for the second semester where he will take his four core classes, two the first quarter and two the second quarter.

He spent a lot of time playing his guitar this week and I enjoyed listening to him strumming some Foo Fighters. I got all of his pre-surgery scans ordered for after the holidays. We have the PET Scan scheduled the day after Christmas, which means Eli will have to get all his sweet treats and fun foods in on Christmas Eve since he has to avoid sugar & carbs the day before the scan. The MRI and CT scans are scheduled for the 27th and are conveniently being done back-to-back, so they will only have to access the port once. We are hoping for good tumor shrinkage. We want at least 90% tumor death. The tumor already has some necrosis because of the telangiectatic variant, which typically has a better chemo response, but I don't want to dive too deep or overthink what could or should be happening.

Friday morning came too early and fast. I have to apply a numbing cream to the area of Eli's chest where the port is located an hour before our appointment so I woke him up to do that. He gave some tearful goodbye hugs to Doozle, telling him that he wished he could come to the hospital with him for treatments. Maybe we can order Doozle a service dog vest on Amazon, but there isn't a chance that he could convince anybody that he passed, let alone attended, one minute of Service Animal School. 

I went over some paperwork with our Patient Financial Advocate. There is a program here in Idaho that we qualify for and it is not financial-based, but rather diagnosis-based and Eli's diagnosis qualifies for financial assistance, so we finally got the ball rolling on that. We've been told that we shouldn't have to pay much out-of-pocket for his medical bills. 

We had a bit of a rough go getting the port accessed and as the color drained from his face he said, "mom, I'm going to faint". Five minues later Dr V. asked him how he was and he replied with an enthusiastic "great!" - demonstrating that you really do have to fake it til you make it. He bounced back quickly and had gained 3 lbs since last week. Counts were good enough to admit, so we ate a late breakfast and got settled in. 

Eli had been watching some Instagram reels and laughing at a bear eating honey, so it was perfect that Richard walked in with a stuffed bear later in the day that looked the same as the bear in the video. Bears are strong and courageous and represent healing and resilience in a lot of cultures. Eli said that the bear is his spirit animal and he named him Burger. Burger is a hugger.

I traded places with Richard and went home to refresh, check on the animals and spend some time with Bella. I have a hard time being at home by myself. I feel like I'm just biding my time waiting to get back to Eli. I feel unsettled when I am away and don't know how he is doing or what is going on. When I came back, Eli was starting to feel a little nausea and just feeling gross so they threw a bunch of anti-nausea meds to target different nausea receptors and that caused quite a bit of drowsiness and he was pretty sedated the rest of the night. 

Saturday he slept most of the day, ignoring my multiple pleas to wake up, go for a walk, watch some TV. It's pretty typical to sleep through treatments, especially for teenagers. He told me I was annoying when I sat down near his bedside and asked him if he wanted to get up for the day, to which he responded, "sleeping is not a problem". He's also created his own form of sign language which includes waiving his hand and shaking his fists in anger when I won't stop making suggestions, asking questions and annoying him in various ways. I just know that he truly misses all of this togetherness when we go back home. So much so that I venture down the hallway to his room to lay in his bed while he asks me what I'm doing there and when I plan on leaving. 

His friends stopped by for a visit and hung out to watch the Heisman ceremony. They were all rooting for BSU Bronco Ashton Jeanty and I think there might have been some booing from room 4637 heard all the way in the Big Apple. He had a footlong Subway sandwich for his one meal of the day. He isn't limited to just one meal, but isn't that hungry until late afternoon. He then dozed the rest of the night away and into Sunday. His eyes are really dry, which is a side effect of the nausea patch and I'm sure it feels better to just be mentally checked out with eyes wide shut. His MTX level at hour 24 was 7.19, which didn't dip as fast as previous MTX treatments, but still <10. 

Labs were redrawn at 4:30 on Sunday afternoon and he had dropped to a .38 special.

Monday he had a visit with hospital PT and we got a stationary bike delivered to the room and had Jersey Mike's sandwiches for lunch. He was feeling much more alert and spent a bit of time playing the guitar. I could listen to him strumming forever. There were talks of a performance for the nurses, but it never got off the ground. :) Maybe he can put on a Christmas concert this weekend.

..."if everything could ever feel this real forever..."

..."if anything could ever be this good again..."

Labs were drawn again first thing in the morning and he was at the magic number of .09, but we had to wait for Dr. P to make her rounds and officially discharge us. Eli rode the bike and went for a stroll and then we broke free. 

It always feels like a freedom ride when we squeal out of the parking lot and we can finally inhale without smelling hand sanitizer. I made Eli two bagel sandwiches and some pancakes. He always looks so refreshed after a shower and some clean clothes and the freedom to walk around, untethered.

I had a call with Dr. G to finalize some surgery decisions regarding the endoprostethic reconstruction and the two different ways we can do it and the pros/cons of each. I think we know what our decision will be and I discussed with Eli last night so he can weight in on the choice. 

We go back for final neo-adjuvant (pre-surgery) chemo treatment tomorrow and home Christmas Eve morning and then a break until surgery. I am grateful that these almost 10 weeks have passed by mostly uneventfully. We are almost through this phase. 1/3 of the treatments are almost done. TGIF.