Battle Hymns of a Hot Mess Mom

Dr. B called today. I needed to understand what the next steps were and how I am to proceed since I need a transplant without it, my Leukemia will return. Dr. B said, it’s not a if, but when. Awesome! So what does that actually mean? It means that regardless of my remission status, I will need to be on a regiment until transplant. Okay, I gotta take the pharmacy of pills. Nope. I gotta be on chemo + pharmacy of pills. That’s lovely. So how long am I on this chemo + pills? Until my transplant. Otherwise, the concern will come back and with far worse aggression. So I’m on chemo lite until my body gives out or I get a transplant. F*ck. That’s why they already scheduled the next round of chemo. I want to be okay but find myself slightly resentful. I realize the alternative is death, but I’m still resentful of this.

Do I ever go back to a normal life? What is a normal life? What would constitute a normal life? Except with the added scheduling of blood work and chemo – my day to day is pretty normal. So is this my new normal life? Do I go back to work and just go to chemo once a month and take the pharmacy of pills? How long can my body sustain this? I guess I really am going to ride this sh*t until the wheels fall off. This is f*cking crazy. Just keep riding this chemo until a transplant is wild to me. So I’m going camping Memorial Day Weekend. Cause whether or not I achieve remission this round, I have to stay on some form of chemo regiment.

I’m just staring at the blinking icon. My mind is just in a fog. How am I going to do this sh*t? Just keep this pace? I talked to my HS friend today for a few hours to catch up as if time had not passed at all. We ebbed and flowed our way through cancer, kids, husbands and life. Will “How are you feeling?” forever be a part of my “new normal”? This is a lot to take in – how long will this be for? Wish I bought that crystal ball back in the day. Hindsight is 20 20.

Dr. C wanted the picc line out because he was concerned with the risk of infection. I can take transfusions, chemo and blood work – peripherally which I leaned is a fancy word for (they can stick me). And of course I’ve got those fun veins that roll or collapse. So they pulled the picc and now the skin around it is itchy and there’s a rash that is spreading. Lovely. Picc was absolutely fine, I was keeping it clean and safe. Now…rash. A little annoyed since I don’t like being stuck with needles to begin with. There’s no enough going on, we have to throw in a rash as well? Should have left the damn picc alone! Grrr.