April 4th I check in at the imaging department at OHSU. On the 5th I rest and finish any and all last minute life stuff. The next day on the 6th of April I have my official surgery. I stay in the hospital overnight, then assuming all goes well a few days later they insert my power pack, then 2-3 weeks later I get plugged in and tuned up. They’ve provided 3 days worth of housing free of charged which is a blessing indeed . Unfortunately the who process is two surgeries and a recommended 30 day healing and stabilization period. These donations will go directly to the lodging and direct care that OHSU and insurance doesn’t cover. Any and all donations are impactful and I can’t express my gratitude and thanks for all of you. Please share the link even if you can’t help monitarily . All things done with love and light will be successful. Always and with some luck, science and faith I’ll see you all on the other side of this. If not please remember to always be brave be bold and thrive in the life you have.
It has been almost a year since true hell came to my doorway and looked down upon my face. Gave a huge smile and said your mine for the next 5 five years. Cancer fucking sucks. I thought Parkinson’s disease was enough, but man i lost so much muscle and the chemo messed my head and nervous system up so bad.. Seriously there are some things that one can’t quantify truly until you’ve lived through them. I’ve been shown the kindness of strangers and the disengaugement of family. Witnessed good families fall apart and bad ones turn good again. Loved ones passed while friends faded and fluxed. I find these days a friend is only as good as they are on their worst day. That is depth of a friendship I’ve found.
As my carer likes to kid with know that Ive gotten “old” Ha!!! Not even 5o yet 😎🎨🎉 As I’ve found as I’ve matured that wisdom gives me site but Parkison’s has made me emotionally blind or hypersensitve to my desires, paint, music,companionship food, love, sex, ect…. The Agnosia plays a tricky little bugger in the mix because it takes foresite away. So where one person may think jumping in that tank of hungry sharks sounds like a bad idea. My brain is a tad more likely to think…hmmmm. It might be okay or hmmm I’ve never done that before might as well before PD or Cancer finishes me off. But in reality getting eaten by sharks is like my hugest fear ever lol. Sooo yeah. Life with Parkinson’s disease has been a trip. A true test of heart and faith. Always chasing an ever changing disease with drugs that are just as bad as the disease ie; side-effects. Anyhow i hope that love and peace find you in this life time. Do truly cherish those close to you eachday. Be as present in your life as possible and if your living a life you don’t want to live then your not really living your just alive. I myself with my ever shinking circle of mobility and friendships chose to live right here right now. For yesterday is gone and tomorrow is never promsied for death as life often comes unannounced.
Those who know my silliness will giggle at this tittle. I find it interesting that here I am just past the eve of my diagnosis of Parkinson’s disease sitting alone on the sofa digesting the fact that I’ve cancer… Squema sarcoma of the tonsils and mid throat. They say it’s localized thus far but I’ve yet to have my PET scan so thruth be told we don’t know. But I’m trying to stay positive though I must admit life has really kicked the shit out of me since my dx with Parkinson’s. Granted for many different reasons some not entirely in my control a lemon snickets of sorts. Bad choice upon bad luck and timing. Have lead me here to a land of my own devices. They say that if you leave your demons unchecked long enough they will become you and you them. Often I wonder if that besides giving life to my beautiful son is not the reason I’m here this last and final time. My fears that have infested this being since its birth. Fears of being left, being alone , of being forgotten and scared. Feeling of doubt and worry mixed with the fact that I’ve been conscious in the shell since before I had words to express it, has been a living hell. My teen years spent so terrified that my thoughts could be heard in every laungage so much unbridled passion and yearning to be understood to be treasured and loved, accepted for the ever evolving human I was and am.
Breathe ……. These words flow like the liquid river of free form thoughts that they are, I struggle to time, to talk click and phrase as fast as the words fall from the sky but I can only catch so…. Many…… At once…….. Breathe ……… Oh my dear lord in heaven forgive my sins of a man,this man ,your soldier since birth. Given wings as a child and sword as a man and wings by death,cursed to never feel whole…. These written words of love and joy,hope, fears and promise of medicine science,faith and the fear of dying….. So many words to describe this process of life and death….
Long pause while I make dinner…..
I’m going to post his as it is for what it is. Mistakes and rambles alike. I can’t write or speak in a voice any more true than the one in my head and heart. So for today, tonight my table for one is set as I dine yet again in my solace of heart watching ass kicking Chinese fighting films lol.
Cheers and much love I’m starving.
Always. Be brave be bold and thrive in the life you have.
Yes I shaved lol, didn’t want radiation to mess up my beard 😂😜😂
Slowly, methodically in little fits of childish rage I’m erasing you from the files of my life. My hands smell like bleach as I’ve scrubbed the floors and everyday I erase a small bit more of the memories we created away.
Slowly I watch you leave for the rest of my life as I know truly what Parkinson’s has done to the memories that have already faded away into sea of lewy bodies madness. The what if’s of and my life was like before the befores. Wash ashore, Slowly and methodically im erasing you from the files of my life.
Each delete a my heart bleeds as your Sapphire eyes fade to black in the void of what is gone is gone and lost forever. A queen and her master have cast the final stone in to the pit of my stomach as I watch you drink from the shared cup of lost desires.
I care not to watch the decent into which the darkness I pulled you from wence, I shall never reach in again. For the hand knows that it’s been bitten even if the heart and mind do not.
Slowly methodically in little fits of sad and dying I’ve found my heart and I’m done crying. I have no lover or companion truly, that I seek, my body is strong where the mind is weak. Fare thee well, cie la vie. Like a magicians white rabbit the last time you’ll see pictures of you and me…