Battle Hymns of a Hot Mess Mom

My nausea was on another level yesterday which made finding gratitude extremely hard. Finding anything except suck is really hard. J left at 11:00am again to get to the kids and have some sort of normalcy at home. The blinds finally got fixed, so I no longer have to be in the bright bright room…it’s nice to be in a little calm. Cytarabine just got hung, thank goodness.

The mess got started yesterday when Nurse T didn’t/couldn’t access the orders which lead to my first chemo being late. At 5:30am Nurse B said that pharmacy would only be willing to move it up one hour…and that I needed to send a SOS to Dr. P because only he would have the power to move my chemo ahead. So half asleep I sent the email to Dr. P and we started chemo right away. Cytarabine was hung so hopefully by 7:00pm it’ll be done. I got my Kytril so hope that I can keep down the food. Snack is here…

I ordered a brownie so that J can have it tonight. I got a note in my tray.

I don’t know if that was meant for me, but it was sure kind of them if it was. There is nothing quite as humbling as sh*tting yourself and needing the nurse to disconnect you from chemo in order to change. Such a wonderful experience. Mostly it’s humbling. Thank you Mr Prune-juice for sliding your way out of me.You are most awesome.

The blinds were finally fixed, so I’m at least more relaxed in a darker room. I have another few more hours of cytarabine. I’m half watching my dramas and half writing in the blog. Mostly to kill the time while the position finishes it doing its thing. After this – 3 more days to do. But at least we don’t be delayed anymore.

Another card, this time at dinner. I made the mistake of ordering cod, the moment I opened the food tray I felt nauseous. I quickly called the meal line and asked if I’d be able to get something else. Fruit cups and granola sound way better. My Cytarabine is about to end, just a flush and then should be done. I’ll have some time to right my ship before bedtime. Hopefully the “747” that is this lovely gem of a computer gets put away outside tonight for bed. There is a fan on it, that suddenly ramps up and “takes off” and then lands every 15-20 minutes. I wear ear plugs so I don’t feel it as much as J does. The children may come and see me this weekend. My fingers are crossed since I am only allowed 2 visitors but I have 2 minors and the two minors can not be left alone with me if I’m the adult. SMH I’ll have to get an order from the doctor to make this exception, and it doesn’t have to be for the entire weekend, but maybe they can see me just Saturday after swimming. I only quickly talked to J about it. I’ll have to give him a better break down when he gets back to the hospital tonight.

I haven’t “slept” today but have rested and closed my eyes for a bit. Sometimes that’ enough to feel better. It’s not perfect but it is something. I’m trying to find gratitude today. Nurse B tried to get my chemo schedule readjusted so it would be until the late evening. Dr. P’s team was quick on approving the adjustment at 5:30am, I did not have Nurse T again, and Nurse C is going to be the charge nurse tomorrow so I requested Nurse R, my cyterabeine will be ending shortly. I got kind cards with my meal tray. Wonderful and kind people that are carrying for me while I’m dealing with epic suck.

I am grateful that the meal service was willing to change my dinner to something else after I realized I couldn’t stomach it. I’m grateful for it all.

I am grateful the RV location at COH put J on the wait list and gave him a spot for the weekend, at least he can sleep well through the night and shower. He returns to the room tonight, say hello and then is silently playing on the phone. I asked if he wants to watch TV, he said he just wants to hang out. This is what happened last time. I’ve been alone in the room since 11:00am, he’s back now at 8:00pm and while he is sitting in the same room as me, it’s silent. No different that him not being here. What’s the point if you’re just going to be silent, just to sleep next to me in a chair? Might as well just stay home. But yes I understand he is trying to navigate this on his own. I understand he needs to be strong and his is his self-preservation. But to me, it just casts a really empty shadow. I ask him again, if he wants to chat. He says “what do you want to talk about?”

I don’t push further. The hospital is not easy for people to adjust to, it’s not even easy for me…let alone him. For now, it’s off to bed.