(I’m, writing this several days before posting, so not sure I will even post these thoughts…
Ok I will, as no-filter is my middle name :)
I look outside my window and see such beauty
His roses, so loved and cared for, now “my” roses needing “my” care
So much upkeep to keep everything beautiful, alive, thriving, clean
I am just so depleted, so exhausted mentally and physically
I look outside and know I must continue on for the humans and animals that count on me, rely on me for Everything…
I know how much Myeloma (and Alzheimer’s) has changed me now
I’m not the girl that started writing this blog in 2010
I dislike taking pain meds as I’ve always tried to work thru pain and I worry about the additional impact on my vital organs
But I’ve had to take Tylenol, Advil several times a day just to take the edge of the pain, just to do the minimum, of the maximum I want to do
Dex Steroids Save My Life! They relieve so much of all of this. Today I feel ok, finally, I don’t hurt so much. Dex Steroids Save My Life on so many levels.
Remember… Myeloma Hates Steroids!
Long story short, he had gotten up all by himself, walked to the door a few feet away WITHOUT his cane or walker, and opened the door a little bit, setting off the alarm. Most of me wasn’t happy, as I’m soooo very sleep deprived, part of me shocked at his mobility, a little bit of me was incredulous and happy for him. But the part of me that is sleep deprived, achy, tired, hurting, frustrated, etc, and a Cancer Patient that never really gets the “luxury” of “being a cancer patient”… reacted in a not so “adult manner”. I let him out alone, and said sarcastically…. “ok, you woke me up early, scared the crap out of me, and here you are, with your brain telling you it’s time to get outside and feed the horses, just like you used to”…. “Great for you Jim, if only this was real…”but I’m not going out there at 7am!” “Gooo, just go if you want to, since your body is so ok today”, good for you”… Happy #%&#! Mother’s Day to me”! I sighed, cried, and started to video his precarious walk out to the horse corral. Not his fault, he can’t help his brain-body sabotage either. I hate Alzheimer’s more than I hate Myeloma…
Yes, bad me… but I’m sure y’all can understand my frustrated, overwhelmed, exhausted emotions.
So I filmed him as he slowly, actually somewhat solidly made it to the horse arena, where THANKFULLY our gardener (who I’d hired a few years ago to help with the early morning horse chores, was already out there with his helper), noticed Jim, and immediately went to him. I could tell how shocked he was! I knew he was looking for me or Jim’s caregiver, but we were no where to be seen or found LOL. Eventually Antonio came to the porch and got Jim’s walker, and Jim safely made it back to the house, thank you Tony! Me, still shocked, frustrated, happy, sad, a bit angry, so I had a meltdown with this in my face reality of all the challenges I must deal with daily, with my cancer situation, and Jim’s Alzheimer’s. Maybe I can upload a video from this insane brain event. No doubt, Jim keeps defying the Alzheimer’s odds. I’m happy and so sad for him…
I have a BIG DECISION oncology appointment Tues, May 12, so I will let you know my current Myeloma lab status and what decisions my Dr and I come to regarding changing up my chemo regimen next week. Did I mention that last week I only did the 40mg Dex steroids and 400mg Cytoxan Cyclophosphamide. And Monday (today), I only did 40 mg Dex steroids, as my Dr wanted me to “clear my system” for the new regimen of Elotuzumab Emplicity and Pomalyst…
Oh boyyyyy, here we go…. Ughhhhh
Ok, I will update you on my next post, 5.20.20
Lots going on, chemo changes May 18, MRI coming, head skull neck pain from myeloma lesions, tumor, mass…. oy!
Thank you for reading and caring and posting hellos :)) Stay well and strong on all levels. It’s a job, isn’t it :))