Been quite a couple of weeks, months...
Pain, Pain, Pain Extraordinaire!
Assessment Assessment Assessment
Suffer Suffer Suffer
Brought to the brink so many times
Pain is way too humbling
I was too smug for too long, thinking I was dominating myeloma, ha!
I can take a lot, but all this pain and bone scan realities of my crumbling bones, spine, neck, clivus, skull has really challenged my strength... brought some new fears too. If my "neck crumbles or breaks"... being a "paraplegic" is not an option for me...
Radiation all this week... Thank Goodness! Zap and kill those cells!
I've been doing 20mg Dex steroids daily to get through this. I have to have mobility and pain relief to get on to the treatment table and in the correct, exact position. Thank you killer steroids for helping as an anti inflammatory! But yikes, I am so bloated up from this dose, and feel so FAT. Can't wait to get back to "normal"... hahahhaaaaaa... Normal, hahahhaaa... never again, sadly :((
Hoping for relief
Hoping to kill some myeloma cells
Hoping to untangle all the angry nerves and muscles wrapped up in tumors, lesions, holes, masses, etc. I feel so fragile, and hate being so limited. We take our physical freedoms so much for granted, until something jolts us into another reality.
I just didn't think Myeloma would eat Me up like this... I'm always thinking "I'm different", that I will defy the odds... (well actually I have with my almost 11 years (probably a lot more), of survival... But cancer and myeloma just doesn't care who you are, how much you try to be ok.,. how positive you are, how informed you are, how well you are treated, how much fight you have, etc. Myeloma will just gobble you up alive... biology and chemistry is just so powerful, and we only have so many tools in the toolshed to fight back... Thank goodness for all the brilliant medical science researchers out there always researching the next option for us.
If you have your Health, you really do have "everything"... if you don't, you don't. Real Pain, deep spirit killing pain, prolonged pain, limiting your life and movement pain, just steals your life, energy and optimism... So many challenges in my life were "temporary". I could always see options and choices. Myeloma and fighting cancer is so different. We are no longer fully in control of ourselves, our lives, our bodies, and most scary... life extending, life saving treatment options. If there aren't treatment options... well... myeloma wins. Just so huge to think how I so little "own my own life" now.
Here's my recent Radiation adventure pictures. I'm too limited to drive myself to treatments, as I did back in 2018. The tangled nerves and muscles within the tumors is limiting my movements and flexibility like none other. I am very fortunate to have family and friends available to drive me and help care for me. Such a twist, as I was always everyone's caregiver...
Couldn't do this without all my amazing
caregivers and "support staff" :))
Myeloma Beacon Patient Stories:
Love Dr Durie of the IMF - International Myeloma Foundation
Great question and answer videos re everything Myeloma!