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Ciao Bella!



As I write this I am on my own and my husband is in Italy…Seriously! Charles and his friend James made a film short a couple of years ago and it was accepted into a movie festival in Rome. They had thought they couldn’t go due to the pandemic but fate said otherwise and with James allowing Charles to pay him back for the travel expenses with a payment plan that will take a thousand years, I dropped them off at the airport yesterday at 4am for a really cool adventure. Charles was initially hesitant to do this because of me, caregiver guilt can be strong but I arranged wound care and encouraged him to do this, something that doesn’t involve my ass, something just for him.


I am lucky that I have a spouse who will do the extensive wound care that I require, “For better or worse” is no guarantee that someone will stick with you let alone deal with the carnage of a serious disease. This being said, I think it is important that the person doing the care gets breaks and has fun without being tethered to the care-ee (not a real word but you get what I mean). Caregiving for a loved one is hard and burnout is real. I think it is important and necessary to be able to get away and recharge, to focus on something less heavy. Honestly it makes me feel less guilty for succumbing to this disease and not being able to handle it all by myself, so it’s good for both of us however messed up that statement is...It is apparent I still have a lot of inner work to do.


I saw my oncologist today. The waiting room was so full I had no place to sit until someone’s name was called and they vacated their seat. “It seems like cancer is the thing to do.” I said to the person sitting a social distance from me. She had a bit of that hang dog energy that some people have, I have had it on occasion myself, everyone has their bad days. The woman turned towards me “You are so sparkly and pretty.” She said, perking up, “Are you getting treatment?” I have to admit that it’s nice that people don’t assume I am sick, let alone stage 4 sick, thankfully they can’t see through my pants, ha! I told her I was indeed there for bloodwork and to talk to my doctor and she appeared to energetically gravitate towards me, to perk up a bit and then her name was called.


I have decided to take a 2 week hiatus with the approval of my doctor to allow my butt crack wounds to heal. She said this was appropriate but once they heal she is going to push me hard to stay on track. I apologized for being such a pain but she just scoffed “No, you do things. You advocate for yourself. You are amazing and so tough.” She has said things like this before but there is something in me that swells up every time she does, it almost always makes me want to cry. The need for validation is strong in me, I need to replace that with “The Force” Obi-Won, do you have any advice? “Always a work in progress that one, hmmmm?” Says Yoda.

Okay, I am getting weirder than usual, a sign I should probably conclude this for now.


Until next time❤️

P.S. If you would like to follow Charles and James’ adventure they are vlogging their trip, I will link the first installment. Subscribe to Charles’ channel if you want to keep up on what they are doing!


https://youtu.be/Y0fchZwY23I


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Tired but not defeated.

I was notified recently that I was being dumped from Medicaid to Medicare. If you don’t know, Medicaid covers most medical expenses and Medicare is a bit more problematic. Like most government run pro