Battle Hymns of a Hot Mess Mom

Despite getting blood both Friday and Saturday I feel like absolute trash today. I have barely enough energy to get out of bed and take my meds and just want to keep sleeping and sleeping. Meds got messed up and Dr. P never called in the Prednisone 20 mg so I had to call over to Dr. G and ask him for a script. Like the G he is – he called it in so I took them at 3:30pm instead of 9:30am. Before the week I need to remind him to send a script for 10 mg for the last week to wean off of the steroids. I’m having a hard time with oxygen and sitting at around 88% cording to the Apple Watch but the Pulse Oximeter isn’t saying any better. Running a light fever of 100.0 and trying to figure out why I’m so without energy after the 2 units of blood. Sometimes the blood just doesn’t come back up after the unit. That’s happened before. After both transfusions I slept close to 11 hours each. Usually I feel like I have more pep, but after these two I just feel tired still. No Marie Kandoing at all.

The GVHD rash is has also been alive the last two nights. I’m slathering on as much of the Triamcinolone Ointment as I can to soothe the itch, with my coffin shaped nails I can easily break skin and rip myself apart. I’m going to try and make a little food for myself – I have to go slow and I have to be steady. Off I go…

It took me close to 30 minutes to make the salad and then I had to lay on the couch for an hour to let the salad settle. It was getting close to evening meds so if I was going to barf it was now or never.

I laid there and thankfully held in the salad that I made. I cleaned up the dishes in the sink and climbed up the stairs slowly. Since I don’t have the energy to purge and Marie Kando my bathroom or the laundry baskets of “stuff” in front of the cabinets I purged my phone. I backed up the year of cancer photos and removed them from my phone. I know what a picc looks like, I know how radiation felt — do I need to see actual photos of the moments to remember? I purged. Not that they aren’t meaningful. I captured the photos at my sickest moments but I want to move forward and I feel like I can’t do that if I’m constantly looking in the rear view mirror. Especially if my photo album if all the rear view mirrors of cancer. I’m aware that I’m not in full remission, I’m in limbo….but I have to live forward with the good and not great days all mixed in.

I felt so sh*tty this weekend that I missed my sweet baby D’s birthday. Ciocia feels terrible for missing it. I realize to him this is no big deal. But for me, it is. I have loved him since he was inside of A. So for me to miss his birthday makes me sad. I will do better and get healthier!

The kids are home tomorrow, some administration day…basically it just means they get to be potatoes with me tomorrow. If I feel good tomorrow, I’d really like to work on the baskets and walk for 20 minutes.

Our whole family lives out of baskets, I have exactly two uniforms at this point only two yoga pants sorts of fit me, Everything else just hangs and slips off of me too easily. So I literally have two uniforms that I wear. I change into them during the day and as long as I don’t leave the house they are reworn the next day. Don’t come for me like I’m flipping chonies inside out. I get a new diaper every day. I’m fresh thank you!

I’d like to finish Marie Kandoing my room and clear other the bathroom cabinets. I still don’t know where my weight will land so giving away all my XL pants seems premature. When I last purged my closet it was a few years before I got sick and I threw out all the skinny sh*t that I was never going to wear then cancer got me snatched…100/10 not a recommended weight loss program. Nothing tastes good anymore.

My favorite Tung-I Onion ramen tastes like absolutely nothing. I can’t tell if the cantaloupe is ripe or not, just that is it cold and crunchy. The cotton candy grapes that L came home with are cold and crunchy, whether or not it tastes like cotton candy I haven’t the slightest idea. I’m afraid of even having boba. Everyone tells me “it may come back” and to be honest as long as that f*cking cancer doesn’t come back I don’t really care if my taste buds come back.

Still jamming on the 99.5 fever so no heavy blankets for me tonight. Such a bummer since a heavy blanket is so comforting. But I have no place to be tomorrow so I can wake up late with the kids. Hope tomorrow is an energized day and that I start feeling a little better.