Battle Hymns of a Hot Mess Mom

It started way earlier than I wanted. Isn’t that always how it goes? My platelets were at a 3 so they needed to start me on it ASAP, The nurse pushed 50mg of Benny, and I drifted. Then I feel someone’s hand holding my hand. Two hands holding tightly to my hand. I was still in my daze and couldn’t really connect the dots. It was S!!! She finished her shift and came down to sit with me. That right there….that is the answer to “what can I do for you?” – just sit with me, gossip with me, let us laugh and laugh…let us offend the people around us because we are loud hahaha. That is literally the answer to “what can I do?” – obviously if you’re living in Alabama I wouldn’t ever dream that you’d fly over to see me. And when you do, my cup truly and utterly runneth over.

S and I laughed the morning through and then she was getting sleepy. We could connect later on. Because I struggled getting out of bed on Thursday I really waned to make an actual effort in getting up and OUT of my room. So I walked and saw a little kids play area, small slide and small swing….little tricycles and a Big Wheel.

I played the piano for a little while it brought me comfort. I cried because the music didn’t come naturally again. My fingers forgot how to play. My fingers just forgot. Saturday and Sunday were quite nice nothing eventful or uneventful. I got the last spot for the JNJ study drug which was huge. Waiting to sign consent forms on Monday. While it isn’t exactly Syndax this buys me time. I’m racing against the clock.

After the happiness of signing consent and getting other bag of platelets I was told by my nurse that I had to move. I asked why, she said there is another patient that needed the room. I had to move. I asked to speak to the charge nurse, she said the housing supervisor said I had to move. I asked to speak to the housing supervisor and this is where everything came from undone.

She marched into my room, opened all the curtains and left the door wide open, took all my blankets so that I was exposed in just my nightgown so everyone could see. Told people to start packing up everything in bags. She said I was stealing a bed from a baby. I said I have cancer too. She said you can be treated on any other floor but no one will touch a baby except a peds floor. I asked to speak to my doctor, she picked up the phone and it should contact “Dr Pullarkat” she didn’t let me speak wot him, she said she just talk to him and he said to move you. I said I wanted to speak to him, she said “He’s too busy to talk to you. But I just spoke to him” She said I’m the only adult on the peds floor, I have to move. I’m not the only adult on the peds floor. Half the peds floor was adults. I asked to speak to her manager, she said that she was the boss and there was no one higher. She bullied me, humiliated me and put me on display.

I sobbed as transport moved me and sobbed as I went into a different room. She was awful.

Why that room? I had felt the room had good vibe/good juju. When I was on 5 my transplant was great. Considering I have a full relapse, it didn’t work. But I got the last spot at the JNJ trial and signed the consent so smoothly I thought it would be amazing because my luck was rooted to the room. (I’m fading again, I’m starting to hallucinate. The meds are kicking in.)