Battle Hymns of a Hot Mess Mom

I made my complaint to the patient advocate and I left it there. I’m not going to let one person who bullied, humiliated and guilted me to reside in while I get well. I’m also not making excuses for her behavior – she was cruel. That is what it is. Currently it’s a waiting game of keeping me stabilized so that I can qualify for the study drug. They are slowing down the chemo pills, cytarabine and I met again on the battle field. I’m still here so I won in a few ways but he also threw some serious punches and I’m hurting.

The children are headed to Big Bear camping which will be super fun for them – it’ll take their mind off of this. I’m scared. No doubt. I’m terrified even to be alone because I’m afraid to die alone in the hospital room. I realize how morbid it sounds. While my mind and heart are here fighting, I don’t know how much more my body can take. I am tired and I hurt everywhere. I’m on 24/7 oxygen because breathing is becoming harder. I know mentally I can do this, I’m just scared my body won’t keep up. But I know mind over matter. I’m going to will it to be okay.

S came to see me before her shift and we had an a blast. S was my night nurse during transplant and we hit it off, but kept it professional while I was her patient, and now that I’m not her patient we can just be friends. She is wonderfully unfiltered and wonderfully perfect. I love our vibe…the conversations are just FULL of laughter. Zero negative, all Love and Laughter. I love that so much. Such an incredible soul!

After I moved into the new room, I needed to pull myself out of my own sadness. I’m getting sicker and the leukemia is getting stronger. I’m not well. I’m not okay. My body is shutting down. The transfusions of blood and platelets sustain me as I race with the clock for the study drug. The leukemia is coming strong. I don’t want to talk about me. I want to hear about you, your family, your happiness. My heart hurts too much right now.

I’m struggling with how vicious this cancer is, struggling with keeping my mind positive. I told A today, to please talk about anything she wants with me except for cancer. Thankfully, she quickly just changed the topic lol.

The children are camping with M in Big Bear while J and I hang out at the hospital room enjoying the 4th. We pivot. M has my feral children, doing what feral children do…play. I’m very grateful.

There has been a lot of drama since being admitted on the 24th but my heart is tired. I don’t have extra energy to spend on detailing it out. Is it important? No. Can I change it? No. Will it even help me to detail it out? No. So why the f*ck should I spend more energy on this bullsh*t. Let it go.