Just found out I’m getting out today!!!
Publicly declaring that I will shave my head when I get home. While the word cancer hasn’t been used by my doctor and won’t be unless the pathology report supports it, I can’t stand not being able to wash my hair. Chemo can’t be ruled out until pathology either, and I’ve decided I’m running this show. So… treatments dont decide how my hair turns out. I do. Plus Dan & I will match.
4 days post op. Doctors do rounds at 6:20 am. And this is what the neurology dept saw today.
They say only good things about my progress, but won’t commit to breaking me out just yet, not until I can meet with radiology. There’s a chance I’ll go home today, but I’m not holding my breath.
If I don’t go, they’re going to have to give me yet another IV. Big ugh. I’m bruised beyond bruised from all the anti-clotting shots. And have become the hardest stick in the history of sticks in the past 8 days.
I’m not allowed to wash my hair yet, and the steroids have made me so swollen. The skin on my face and lips hurts a good deal — like a bad sunburn because it’s stretched to the max and it happened so fast. When I’m in the most pain, my right eyelid gets droopy. That’s my tell.
The smell of the dry shampoo they have here coupled with the previously mentioned hand sanitizer smell makes think I should do a vomit pool or something. I hate it.
My hands and feet are are at various stages of ballooning as well. My appetite is getting better & better, and I have been promised more french toast sticks, yogurt & a banana for breakfast.
Just had a dose of my muscle relaxer a while ago, and 1000mg of Tylenol before that.
Watching the sunrise over St. Louis and waiting for breakfast from my private room. Rare tumors get you things, apparently. I do not feel like an unperson or anything, but these people are fascinated by rare brain stem tumors. They all but high-fived each other when I said I’d be seeking treatment here too.
Look for me to be mentioned in The New England Journal of Medicine some day. A patient only known as a tumor number. 😜
I like to pretend I’m going to play some part in a cure.
Sometimes I say things out loud like like “I have a brain tumor.”
When all of this MRI stuff started, I joked to Dan that I wanted a diagnosis cake that said, “Congrats! You HAVE MS!” Now I want a stork cake that says, “it’s a tumor!”
Dan handed me these surgery stars that he was squeezing Thursday in the waiting room. I lost my shit. This is so impossible to process.
And a pic 2, my head post-op, for good measure.
Tonight’s misadventure is eating. I can’t swallow. Nurse thinks it’s just the breathing tube irritation. I hope so. I don’t want to choke on chocolate mousse the rest of my life.
I hate the smell of hand sanitizer. GAWD awful. But particularly the stuff they use here.
Finally got up the nerve to take a look at my incision (omg it’s huge) and my head staples. My surgeon is meticulous, no question there! I’m not ready to post them, but probably will eventually — you’ve been warned.