Chapter Seventeen, Getting Acquainted with the ER

As usual, italics were written at the time. Regular type is commentary I wrote today.

May 4, 2012

3:19pm
29% of the radiation treatments complete! White count coming up a little, though still low (ANC 800, for those interested). Staying up in PDX for the weekend, just to be close to the hospital. Sam's still a beast after sedation, but he's tolerating it better and that makes it easier for the grownups too. Spent Wednesday evening in the ER because he's been having transient, stabby headaches. Bright side: MRI showed that the shunt is working very well. Possibly too well! It will be re-evaluated in about 6 weeks, but is not concerning for now. Headaches suck though. Eating better the last couple of days and his weight is, for now, stabilized. All good news.

Sam is VERY proud of the fact that he was able to hold still for 5 whole minutes while his head MRI was done and wants to tell everyone all about it. "I wore a helmet and they put pillows on the side so my head wouldn't turn like this or like that," *turns head left and right* "I was in the machine and it made LOTS of noises, clanging and clunking, but I had plugs in my ears and I held so still!" Sweet, funny boy.




I feel so fortunate that I was able to spend every day with Sam while he was in treatment. I did have times where I wanted to run away and pretend everything was okay. Cancer treatment is a marathon. It's life changing on so many levels.

For example, you learn about reserves of endurance and strength that you never knew you had. Lots of people have said, "I don't know how you do it." or "I couldn't do what you're doing." or "You are the strongest person I know."

I say to all of them, "It's amazing what you can do when it's what you have to do."

Another way that it's life changing is that you have to look, and look honestly, at parts of yourself that you've never had to confront before. There is unexpected stuff, both beautiful and ugly, inside each of us. The part of me that wanted to run away was fairly ugly. The fact that I couldn't and wouldn't indulge that part of myself by actually running away is what makes knowing it exists bearable.

If I am perfectly honest, I have to admit that I did indulge that part of myself in small ways.... but not by physically leaving. I did leave him sometimes while I was in the same room. I left him by paying too much attention to my phone or Facebook and I left him when things got too heavy and I retreated into the clinical part of my brain. I beat myself up about it for a while, but I learned eventually to give up that guilt. Taking time out however I could was a coping mechanism that I needed in order to be as present as possible as often as possible.

I was used to having time to myself occasionally. I had always "needed" time to myself to recharge and be functional. I didn't get time to myself during this time period, nor would I for many, many months. I figured out how to cope and learned that what I had considered a need before was really more of a desire. As I said, it's amazing what you can do when it's what you have to do.

7:32pm
I am wishing for a pause button. You know the one that lets you go out for sushi or spend an hour in a book store or two months travelling to Marrakesh on a tramp steamer or an evening looking terribly hip while writing love poems and plugging the jukebox in a dive bar.... AND still somehow allows you to spend every possible minute with your child.


May 5, 2012


10:45pm
Back to the ER for IV fluids and an electrolyte check. Nice walk back pulling a sleepy kiddo in a radio flyer, all bathed in the silver light of that gorgeous moon.


There is so much to do in Portland. Since we were essentially living there and had huge stretches of time on most days where we weren't otherwise occupied, I kept feeling like we should be out doing something.

May 6, 2012
On this day we (Sam, Grammy, and I) went to the zoo. We rode the zoo train and Sam fell down because he was so weak from hunger that he couldn't walk. It may have been the worst zoo trip in the history of zoo trips... except ones that end in someone being eaten by lions, mauled by bears, or trampled by elephants. I will concede that those trips are probably worse.

This is the only photo from that day.



May 7, 2012
1:25pm
The stuffed tiger (named "Jeff the Landlord") asked me some questions this morning:
"Is Sam going to get a poke while he's sleeping at radiation today?"
"Nope. No pokes today."
"Are you going to stay with Sam while he is sleeping?"
"Yes I am."
"Is Sam going to sizzle while he's going to sleep?"

2:27pm
Sam is still not eating or drinking. His weight loss now totals a little more than 5lbs, which is a lot considering he only started at 40lbs. He'll get a feeding tube placed today while he's sedated for radiation and then we'll be admitted for a couple of days to monitor his tolerance of feeds and nutritional status. His white count is slowly but surely coming up, which is good news.

Dr. Dan placed Sam's feeding tube while he was sedated. I was relieved and sad. Sam was crabby about the whole experience, which was expected. He especially disliked the sticker on his cheek that held the tube in place. He, as he always did, persevered remarkably despite not liking it.

May 8, 2012
12:20am
Wow. It is so nice to not have to harass Sam about eating. He can eat if/when/what he wants. If his throat is too sore to swallow, then he can just chill and not worry about eating. Add to the list of things I never thought I'd be excited about: Tube feeding!

For now, it's a nasojejunal tube (totally by accident.... how often do you think a tube could be placed that low on the first attempt if you wanted it there? Never?!?). If he continues tolerating the feeding, then we'll pull it back into the stomach and start bolus feeds. He's doing really well with the tube, except that he log rolls in his sleep, which winds it around his neck.

The morning of May 8th was the first time we had to get up to switch the tube feeding to water at 2am and then again to turn it off at 6am so that he'd have nothing in his stomach when he was sedated for his radiation appointment.

One of the other things I learned about myself during the course of Sam's treatment and recovery is how very little sleep I can survive on.

Next: Chapter Eighteen, More Adventures in Tube Feeding