Battle Hymns of a Hot Mess Mom

I had to take my medication to sleep last night. Once I said good night to the kids – I drifted off to sleep with Chopped or maybe it was Bobby’s Triple Threat in the background. I woke up at 5:30am and the brain was on after that. Went back to the “continental” breakfast with absolutely nothing available again. Too bad. Though there was coffee.

Arrived at the ETC to sign into the Day Hospital to get the premeds and get the radiation show on the road. There’s still no WiFi so beyond my two bars of service I won’t have much. Nurse P offered me some breakfast so that I would have something in my stomach.

I’m trying but I’m just anxious. Each time the transport team comes to see if I’m ready I’m anxious as all hell. Like let’s get this show on the road! I just hear this tick tick tick tick in my head. The wait is always the worst.

My dinner was uneventful but in all honesty; I should have just ordered DoorDash. I was not impressed with the food from the HH restaurant. Will need to look into alternatives tonight if food is even something appealing to me.

J went home to work; there is no point just sitting in a room with me all day. I don’t feel like crap yet. When I do feel miserable – he stays and makes terrible jokes. Mostly about my height. I remind him that I am taller than both children so when he makes fun of me needing the step stool – remind him that his children also need a step stool.

We rode over from HH in the golf carts and I impressively snatched a mosquito out of the air and squashed it in my hand…with someone’s fresh blood. That part was gross. I had to hand sanitize that as soon as I got to the machines. Ew. I got out of the elevator and some guy yells at J “Ladies First” so his wife could exit. I turned “B*tch is she going to catch me if I fall? If not shut the f*ck up and keep it moving.” We all have f*cking cancer…I have had no coffee and it is 6:45am. Now is not the time to test how ghetto I can turn. Honestly…if people could just keep their mouth shut any process can be smoother.

My premeds are late. Nurse P said it’s ready and left 15 minutes ago. It’s not 8:43am. I’m still sitting here. The nurse is taking forever. She keeps wanting to talk to me despite my very obvious silence. The medication just hit me – and my hooha instantly. The nurse said that I should complain to Dr P. I was playing my Pokemon and I lifted my head and asked “For what? What will complaining accomplish?” I’m still missing my liver protection meds. Patience is wearing thin and I’m back to zero reception.

Radiation 1 – Down.

I stand in this cold room with the xray machine pointing at me. I face it and then turn around. Thera no reception so I continue listening to my audio book. I re-checked out “The Light We Carry” because it was returned before I got a chance to finish. As Michelle Obama read her book to me; I got radiated. There was a slight burning and discomfort in my lower back but tolerable.

I met a lady waiting for her husband. He also has AML and is on the same program I am. We are both on the same schedule with radiation and chemo. She looked terrified and didn’t speak much English. I lacked the Spanish skills to communicate. But I told her “We will be okay.” She trembled and her tears rolled into her mask. She nodded and quietly cried. Acknowledging my statement. We will both be okay. I told her that her husband and I could be walking partners. Her eyes smiled through her tears. She said “Si, Yes!” I reached for her hand and held it. She repeated “Si, Yes! Okay!”

The more caregivers I meet the more I understand J. These caregivers are helpless and terrified. They just want everything to be okay again. They want to live their life again as well. They don’t want to drive to infusion centers, labs, or hospitals. They don’t want to go to the pharmacy anymore to pick up the Skittles bag of medication that they need a CVS bag to carry them all.

RN B came into chat. He apologized for the delay and mixup. I told him that I was grateful. I was scared no doubt. I have had no medication in two days. I’m relying on my jankey body to ward off cancer. It’s not easy to keep your brain at peace.

So…the transport nurse took the wrong patient to radiation. Apparently I pass for a 77 year old… the mixup cause delay in my radiation. What are you going to do? Things happen; I have to laugh about this. I’m all types of social today. But to the 77 year old lady that went for a freaking ride to radiation was probably scared and confused. Like she literally got kidnapped.

I have learned that self advocacy is incredibly important, especially when it comes to healthcare your own healthcare. I have a numerous occasions, asked plenty of questions and challenged procedures that were different than what I was accustomed to or what I saw was the baseline routine but for the 77-year-old lady who was supposed to just go home but ended up in a radiation queue. She may not have advocated enough for herself if at all.

When I finally got in the queue for radiation – there were two ahead of me. I met a lady named B who has breast cancer and ask if I got my free hat. Oh free hat? Yes please! I said I hadn’t and she I going to head up to the hat play and get me a hat! How nice of her!! She robbed the free hat place and came back down with options! She handed me two and took the rest upstairs. She asked me a really interesting question. “What has kept me going?” I told her “Identifying kindness, once you start noticing kindness it snowballs and all you see is kindness.”

I stand as still as possible then turn around and stand as still as possible again. I have a harness in case I pass out. I don’t feel great now. Probably shouldn’t have eaten dessert for dinner.