It's been a while since I've written here. I had to take a little time off. Partly to examine my motives in writing this and partly because life has gotten busy. I think I am ready to tell the next part of our story now though.
Here goes.
May 17, 2012
8:48am
Yesterday's chemo made last night a rollercoaster. 3am pain meds for abdominal nerve pain. Poor little guy. He's really looking like the sickie that he is these days. Hairless, pale, dark circles under his eyes, skinny, and bonelessly limp when he's tired. He's tired a lot. It takes a bunch of energy for me not to dwell in a sad/scared place. I keep finding myself wanting to step out of reality. It helps that he is so amazing. He's fun and funny, when he has the energy for it. Yesterday he was silent and grim, lying in the wagon, covered to his neck in his favorite quilt, waiting for the sedation team to arrive prior to radiation. He had a tiny, plastic pteradactyl (spelling?), named Terry, in the wagon with him. I grabbed up the dino and had him fly around, investigating everything and narrating what he found. Terry kept sniffing Sam's ears and pronouncing them redolent of "stinky cheese". Sam laughed and laughed. Which, of course, made everyone laugh. It was good to see his smile and remember that, no matter how bad it feels today, this is a stage, replete with its own joys as well as sadnesses, and it will soon change into something different. I love the reminders to enjoy each moment for what it is, instead of living in a place of desire for some other reality. Now, I better have another cup of coffee so I can stop rambling. :) Good morning.
6:25pm
Today is a beautiful day. Sam was gifted with his own very own wagon by a never-before-met friend of a friend who ended up being the best friend (since childhood) of one of my aunts.... small world? I'd say. Sam's feeling good enough that I was able to leave him with the g-parents for almost 2 hours and walk in downtown Portland by myself. I bought some supplies for a project that's been poking me in the creativity for a few weeks. Mozart is playing in the Thai restaurant where I am currently waiting for food to take "home" to my family. The sunshine is so gorgeous it's almost making me cry. And people watching here is freaking fabulous. More? No, I wouldn't dare ask for it.
May 18, 2012
8:40am
Chillin' in the awesome new wagon, waiting for the last radiation of the week. After today: 2 more craniospinal (aka "big") radiation treatments and then 10 focal (aka tumor site blasting) treatments and then.... *drum roll*.... 6 weeks off!
May 19, 2012
12:10pm
For Sam: wagon ride + pinwheels = bliss.
For mom: kid learning about velocity and aerodynamics + kid happy in the sunshine = bliss.
In this pic (taken yesterday) he was moving the pinwheels around to see which direction they caught the wind best, in this case the wind was coming from behind us, so the pinwheels are facing backward. He kept fine tuning them, turning one and then the other by degrees until he achieved max spin. It was fun to watch.
Sometimes when I read the stuff I wrote when he was in treatment or look at pictures like the one above, I end up transported back. I feel those emotions again, that bizarre mix of befuddlement and startling clarity. Everything was in sharp relief. Beauty was almost painful in how acutely I experienced it. We were all exhausted. Days ran together and nights were often confused and occasionally frightening. Weekends filled me with dread. The IV fluids I insisted he get each weekday during sedation were the only things getting him through. On Saturday nights, he was always dehydrated and terrifyingly limp. In this picture, his lips look black because they're scabbed over due to radiation burns and dehydration. We spent most Saturday nights in the ER. Charlie the gorilla (tucked in behind Sam) often came with us.
May 19, 2012
8:22am
Another night in the ER. 6 hours this time. Ugh. Fluids, antibiotics, and a chest x-ray later, it's looking like Sam doesn't have pneumonia. Just a low grade temp, vomiting, and the general blahs. Dear cancer and cancer treatment: you pretty much suck. If you just dropped off the planet, no one would miss you. Xxoo Jen (P.S. Amy RN in the peds ER totally rocks. She made our visit so much better than it might have been.)
Up next: Chapter Twenty One: A Visit, an Eclipse, and a Clown Nose.
Glad to come back to the story. Thank you.
ReplyDeleteHannah