Battle Hymns of a Hot Mess Mom

I was too exhausted last night to reflect on the days events. Vitals were done at 11:00pm, morphine administered at 12:00am along with labs. Then I was left alone. I put my ear plugs in around 12:30am and passed out until they woke me at 5:00am for vitals and again at 8:00am. How do people rest at the hospital? They don’t.

It’s not the ocean view from the first time, but I still have blues skies and some power lines. I see the highway and the trucks and cars moving along the way. At night, it looks like stars in the horizon. The shade broke so it’s fully bright in my room which is fine, I have eye shades. Before I unpack what today is…logistics first.

Etoposide (2 hours), Fludarabine (30 minutes), Cytarabine (5 hours) and Venetoclax (pills). Etoposide and Venetoclax have finished…Dave beeped for another 20 minutes before Nurse T actually picked up to get me. The charge nurse just paged him, he’s not on the network and his pager battery died. Just trying to breathe this one out…would really not like him tomorrow. Actually hoping that he’s not working for the remainder of my treatment. I will definitely not mention my dressing change on my pic line until AFTER shift change. I’m anxious when he’s pulling labs. I’m more mindful of my labs now this time around. Thank goodness there is technology, it keeps me updated to my stats and including my sugar…they are perfect! About damn time, something is perfect.

The next one up is Fludarabine…this is only 30 minutes. Because my premeds weren’t started at 8:00am as the order stated, my last chemo won’t finish until 10:00pm or so. Thanks T. Around 9:00am we were already wondering why chemo hadn’t started, Nurse T said there weren’t any orders. So I contacted Dr. P’s team…orders were placed last night. Seriously friend? K on Dr. P’s team was highly annoyed that chemo didn’t start already. She called the charge nurse, and magically the orders were no only in the system, but we would be ready for chemo soon. Soon was 11:00am. Who doesn’t want f*cking liquid death right before bed time. Awesome!

That’s the logistics of it so far.

Premeds were supposed to start a 8:00am today…but because they weren’t I will have chemo into the mid evening. F*ck. This goes back to needing to be your own advocate – even at a hospital that is world renowned – you have to check and double check. You have to push and keep pushing. I reached out to my doctor and they weren’t sure why I reached out and why the nurses didn’t reach out. Um….I got nothing.

Today was supposed to be Day 0. In the transplanting world, this is your birthday – this is when you are given new life. I matched 10/10 for a donor…and the prelim schedule was 8/8. But then cancer came back and the donor needed additional testing. Instead today is first day of chemo. Day 1 of 5.

I’m tired and feeling more nauseous by the minute.