Nights are tough. Days are turned around.
It’s 11PM and this little monkey is sad. She says she’s had absolutely no fun today because she fell asleep and wants to play all night. We are trying to turn her clock around bit by bit so 11PM is where we are at tonight for a bedtime. I’m being firm. The nurse is patient and kind. We’ve tried some songs, stories, 2 videos (until I realized that this was a stall tactic, not a truly tearful request), talking, lots of tears and frustration and It’s almost 11:30 now. This is the way through the trees. I’ll try a fairy story, that sometimes works.
***11:40. Fairy story wasn’t fun enough. In fact she hasn’t had fun since we got here. In fact, she will never have fun again because it’s not fun now. What do I say to this besides the same tired response of I love you, tomorrow is another day and if you sleep at night, playing is better in the day. Her hair is falling out quickly now. I’m getting ready to shave mine off. Ready. Can anyone every truly be ready for the absurdity of cancer and the resulting treatments and side effects? The doc came by before his holiday and asked me a couple of times if I had questions. I said, no just the same one…can we skip the etopiside? He sighed and chuckled. I wished him a good vacation. I’ve got a reputation now.
Last night I insisted they remove a port in her leg because it was paining her a great deal. The nurses didn’t believe it and called it anxiety which in some ways was true. In the physical way though it was truly painful and finally after 2 hours of gentle insisting on my part they gave in and removed it. Tonight we had to redo the port and this time we gave her some Atavin. Or however you spell that. I can’t be arsed to look it up. This gave her 3 hours of fun and a HUGE appetite which tells us now that 1. the port last night really DID hurt her (as the new one is not), 2. that mom needs to do the injection with no nurse in the room 3. anxiety is the bane of her appetite, 4. punctuation is pointless.
I’m all over the place today with my vinaigrette of the day. I hope you are as non linear as I am and if not, you can cut and paste to your hearts content into a text editor of your choosing. I recommend Libre.
The toss and turn looks like it’s turning into the anxious pulling of hair. I’m going to go and snuggle her even though she doesn’t want me to and see if I can soothe something for her. Something. Anything. I feel a bit like a very helpful tomato. Immobile, round and squishy and not very warm. I’m going to have to be sauce.
And now it’s 2:30am and she’s off to sleep. Blissful, shorn hair sleep. Tomorrow might be rough. Or not. I cut the mats out of her hair and most of it fell out in my hand as I did so. Fresh surgical scars were dressed and bleeding from scratching has stopped. Tonight I send her dreams of cool mornings in the spring, not frozen but fresh….dewy with that taste of promise unsprouted grass gives the nose.