I spent last week inpatient. After changes to medications and a respite of sorts, I came home Monday. Around 5pm, my neurologist sent me a message via their medical messaging system to tell me that we were out of options and would need to seek outside opinions from Case Western University Hospital and Cleveland Clinic; and also, we’ve already done this. This means we have finally arrived at immunosuppressive therapy to turn off my immune system and turn it back on; you know, like a computer. I start with steroids today and will start chemotherapy in the coming weeks which will last 4-6 weeks and then again at 6 months. (AND possibly also brain surgery to place a shunt.) Finally, I resigned from work on Friday.
I have so many things running through my mind. They’re screaming as they lap one another. On the surface, I feel … peace? (I think that’s what they call it. *shrugs*)
- it’s going to be weird to have so much time on my hands but really not being able to do much ‘going out’ going forward.
- It is strange to refer to someone as your “boyfriend” at the age of 39. He is neither a boy, nor JUST as friend. I like main man. EX: Maui is my main man.
- The new meds are making me hella sleepy, but the steroids will make me on edge. New meds proving to be very necessary: “God’s will be done.” Because *motions around to everything going on* FUCK. (Sometimes it’s the only word to capture the true fucked-upedness of the moment.)
- My brain needs to be numbed down to avoid burning out, but that’s all the drugs do.
The rest of it is really hard work, mindfulness, that only I can, have and will improve upon doing for myself.
Also, I have never felt better mentally and/or more sure of myself. I don’t know what’s going on now, or what will happen in the future, but there’s something delicious about ambiguity and I know whatever it is I can handle it. I’ve got nearly 20 years worth of blogging here to prove it, no matter what the ‘shitty-committee‘ that meets in my head likes to say. There is batshit crazy POWER in being fearless. This is next level. The proof is in the pudding, folks. I have a 100% survival rate this far after all. *smiling broadly*
HOW ITS GONNA BE:
- I’m not going to let fear drag me anywhere, nor reel me in. It may have a moment and I hope that is all.
- Being inpatient taught me that I’m not alone and couldn’t be even if I tried.
- People are hurting, ya;ll. People need connection with other people. Bottom line.
- I may spend the rest of my life not being able to work for a paycheck, but I promise I am going to be doing hard work.
- I will be spending the rest of my life making sure I take time to sit with the broken because that’s my character and, my biggest hope, leave a legacy of love for my children. There’s worth in that. As long as I know that to be true, nothing else matters.
Diva, while you may one day fear becoming just like your mother, just remember this, Im a strong, mutha, baby girl.