Chapter Fourteen, Radiation and Percentages

I was thinking of everything as a hurdle to leap over. Each surgery, radiation treatment, round of chemo... each task getting us a step closer to an imaginary finish line. I was holding "the end of treatment" in my mind as a destination. I also had moments of overwhelming awareness that the journey itself was all of life.

Each tiny moment is all of life.

April 23, 2012 

4:05pm
Hitting the road, heading back to Portland today for the first round of radiation tomorrow. Wish we were headed to the coast on such a beautiful day. I'm longing for sand between my toes! Bright side: I'm getting to spend a ton of time with my kiddo. :)



9:57pm
It's hard work being this rad.


The radiation suite had a giant, thick door like a vault. I knew that Sam got locked inside by himself, secured to the narrow metal table, head held in perfect position by his white plastic face mask. Thankfully he was sedated before any of that happened and our "radiation friends" as we would come to call the techs, never even got the mask out until after I kissed his sleeping face and left the room.

April 24, 201211:47am
I will never get over the horrible feeling that comes with watching my child be sedated. Deep breath.

I have sedated a lot of people, it's part of my job. The medication that Sam got to sedate him was propofol (also called Diprivan). It's white, like milk, and is administered IV. Within a few seconds of the infusion being started, Sam's eyes would glaze, he'd have a huge yawn, struggle for a second, and then he'd be gone. They often let me hold him while sedation was being initiated. Feeling his body go limp in my arms was awful, but I wanted to hold him every time anyway.

2:57pm
Alrighty then. Radiation #1 of 31 complete. Other than the ANGRY BEAR that my child turns into when waking up from sedation (Really. He will rip your poopy face off! -- I'm paraphrasing, but you get the idea.), it actually went kinda ok. *continues breathing deeply* I can't wait to laugh about this later.

2:58pm
And by "later", I mean "someday".

4:27pm (response to a friend's comment)
Oh I am laughing.... sometimes. It feels inappropriate and, at the same time, like the only logical reaction. When a buck-naked, half-alseep, popsicle-mouthed, red-faced, pin cushion of a four year old screams, "I HATE YOU, POOP!" (Because 'poop' is the worst thing he knows to call someone). It's the saddest, most hilarious thing ever. Sad for all of the reasons you'd expect-- primarily because of how distressed he obviously is. And hilarious because, well... just picture it! Yeah, life is good. Even when it's really, really shitty. PS radiation makes him vomit. Popsicles of several shades, ingested within a single hour, make it like a rainbow.

4:33pm
Actually, I'm laughing a lot less than I'd like. A lighter heart would make this experience better for all parties concerned. This is our path, regardless of how much parts of it suck. Why not find the good stuff everywhere we can?


Many friends sent us messages of love and support that day and through the night.

April 25, 2012 9:04am
Thank you, all. Today feels better. 2pm appt for radiation #2. Let's hope for better wake up and good nausea relief from pre-meds!

7:25pm
Today was long, but better than I thought it might be. Radiation #2 and chemo #1 can be scratched off the to do list. Sam is wild and spunky tonight after a good dinner and some serious train play. Now he's having a great time, chilling out with bear, lamby, and his doctor kit. I have never seen two stuffed animals get so many shots.... :)

I figured out that night, after radiation treatment number two, that each treatment represented 3.2% of the whole.

6.4% complete sounded like a drop in the bucket... but it felt good to have something to cross off the to do list.

Next: Chapter Fifteen, Spider webs and vincristine.