Sometimes you just need to get a running list going of your blessings no matter what you aint got.
Either you are calling me crazy or the bravest woman you know, I don’t care. ~ Wendy Williams
“Call it a clan, call it a network, call it a tribe, call it family. Whatever you call it, whoever you are, you need one.” ~ Jane Howard
I am so very thankful for my wild woman sisters from other misters today. We were supposed to have book club last night, book club. Innocent, enough. As it turns out, our fearless female leader had fallen ill, so the two sisters I had tagging along for book club and I ended up at barcade. We got our Yoshi, pinball, PacMan, Skee-ball ON and were silly and wild and there was so much laughter and joy. Different ages, different races. Delicious ambiguity.
Yes, please, may I have some more?
Me: I’m a hot mess
He: You’re my kind of mess
Me: Why are you doing all this?
He: You’re worth it.
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.
Cold and blustery. Intimidating on the surface as I start immunosuppressive therapies tomorrow. I just needed a day to dust myself off, get back out in the world, see beauty and have fun. I was not disappointed.
Maui took me to Cleveland’s Botanical Garden for ORCHIDMANIA and a butterfly release. I was not disappointed:
This was promptly followed by an evening at the casino hanging out with my secret identity where I was reintroduced to an old flame, spending money as entertainment!
We even hit a Red Robin up on the way home for burgers, bottomless fries and bottomless root beer floats. YUMMM.
The point is, I’m so grateful for today. It may the last day I’m able to get out and walk amongst the living for a while due to the immunosuppression, but Maui was determined to show me a good time. We got a little crazy at the casino.
There was lots of smiling and laughter. My heart is full. That is all.
Knowing when to quit may be my greatest victory.