Radiation Radiation Radiation- Zap You Myeloma

7.30.20

Hello Friends-
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 scan information of my crumbling bones, spine, neck, clivus, skull has really challenged my strength…

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.

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.

https://www.cancer.gov/about-cancer/treatment/drugs/multiple-myeloma

https://www.myeloma.org/multiple-myeloma-drugs

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

https://www.myelomacrowd.org/myeloma-news/

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…

Here’s my recent Radiation pictures, and I will update the whole story with what the heck is going on with me…

Best care ever at Kaiser!
Best son ever driving me to my appts
Can you find all my holes, lesions, tumors, mass?
Let’s get this Radiation party started!
With the damage to my Clivus, spine, skull, neck area
I’m in danger of becoming a “Bobblehead”! or worse, 
Paralyzed from a break!!!
Rods, pins, surgery, Kyphoplasty  
If radiation doesn’t work??
Git er done Radiation!
Zap those crazy myeloma cells
Ouch! This crazy Clavicle mass, hole, tumor
with the muscles, nerves pinched and wrapped around and in it
Such intense, immobilizing pain
Best caregiver, driver, chore daughter ever!
Can you find all my holes, lesions, mass, tumors? 
Wish I knew how to really read these scans
Don’t move Julie!
Wow, then they snap this mask in to the table
to hold me steady, whew
If it’s not perfectly aligned…
Owwie!!!
Such amazing Technology
LOL, didn’t intend to match so perfectly!
And I’m all ready for Halloween
Do you have a Mask as cool as mine :))

Myeloma Beacon Patient Stories:
https://myelomabeacon.org/tag/patient-column/

Love Dr Durie of the IMF – International Myeloma Foundation
Great question and answer videos re everything Myeloma!

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