Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How’s that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I’ve got the routine down, and I can somewhat predict the weekly crash and side effects.
I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently “bet” with myself if my numbers will be around the same, or down, or up…
Not sure what I’m feeling, guessing from yesterday’s labs… hmmm…. what’s your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to “high dose” 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!
My WBC is a shocking “high” of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?
You know those cancer articles, TV pharma commercials, poignant news features of one’s loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success… Well I do a mental gulp (sometimes a pissed snicker if I’m on my steroid crash), at the “short” treatment time mentioned,… as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being “done” with chemo!… My heart truly hurts for anyone’s diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to “the end”… Honestly, lucky them for being able to “ring the bell” of being DONE with chemo treatment in a “short” amount of time. Ring the bell, ha, not this gal, thanks to Myeloma’s incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I’m just still so surprised and shocked with my situation. This just can’t be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??
Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you’re curious my MM status.
All else is continued loony bin ridiculousness here… again, just can’t wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((
Here’s to hoping your’re able to work on your 2020 dreams and goals.
My top goal for 2020 is “Less is More” regarding slowly sorting thru all our 38 years of stuff… I have so few “good days” where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it’s all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our “storage trailer” in the back. Sadly this now “storage trailer” used to be Jim’s off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :(((( Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can’t process our reality. He does know when I’m gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that’s the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,… He loved nothing more than “doing”, being busy, doing. He’s just “existing” now…
We never know what’s coming down the line for us. And I certainly did not anticipate the big ol train wreck we are…
This is what I had hoped for…
May your dreams continue to come true, and your life goals always be in process…