Seriously Myeloma… Up Down Up Down, Good Bad, Good Bad…

Hello 11.3.18

Just a quick side trip from my usual “On the 8’s Posts” as I just cannot believe my “Bi-Polar” life.
Seems like Myeloma loves to play tricks on me, giving me moments of normalcy, then ripping that quickly away :((

If you follow my blog regularly, you’ve experienced all the crazy extremes in my life. From debilitating side effects, illness and pain that tests my spirit beyond what I think I can handle, to fun adventures that don’t fit the image of someone with terminal, incurable cancer. I just shake my head, take deep breaths, and try to accept and laugh at my circumstances.

Which brings me to this post, as October appeared to be mostly fun fun fun, with Myeloma in the rear view mirror, and nothing like my July, August, September, which were truly challenging months! … Well, most of my months, weeks, days are challenging, but I’ve learned, that for me, PAIN is what brings me to “my edge”. The insane side effects and backlash pain I experienced from Zometa, to the absurd bone, nerve, muscle pain (from perhaps Zometa triggering something?), or just all the myeloma lytic lesions, plasmacytomas letting me know they’re there?, were all just so unbearable, bringing me to my brink… And then…suddenly, I’m briefly able to feel well enough to participate in a few wonderful events…then side effects, illness ambushes me again…

Yes, what happens in my life are unpredictable, brief moments of functionality allowing me to participate in “real” life. I can’t control the timing of my medical dramas, and sadly, I have missed so many wonderful events this year, especially family, friend wedding events. Myeloma treatments, pain, and illness have ambushed me at the worst times. Then suddenly, inexplicably, the dark cloud passes and I’m able to participate in life. I can’t control the timing of things, and I’m stunned when things work out, and also when they don’t…

So after the last minute shocking ability to go on the cruise, I got sick. (Not too surprising, right?!) I was ok, then not. Fortunately, I recovered enough to participate last Saturday in Bark For Life, and be their featured speaker. I was not fully well, but ok enough, with the boost from steroids. Up Down, Up Down. Good, Bad, Good Bad… seriously ridiculous!
All seemed to be improving for me. My horrendous leg, bone, hip, etc, pain was ebbing and subsiding.. my headcold was slowly disappearing, and I braved up, and took 3 of the 8 prescribed Cytoxan- Cyclophosphamide on Monday, and had limited side effects from that…

THEN BAM! Wham! Backlash! While walking down my hallway on Tuesday, I coughed. Not a deep cough. Not a big dramatic cough, but a cough. I usually stop and bend to cough or sneeze, but this time I didn’t… POP, CRACK, SNAP! I heard and felt a horrible, knife stabbing, twinge on my Right side ribs… I couldn’t believe the searing pain, but I kept walking, doing some stretching and bending, trying to work out the pain. But the pain and tightness gripped me deeply. Fortunately, I still had the afterlife of 40mg Dex steroids in my system from Monday’s Velcade and Cytoxan treatment day regimen, so I knew that was helping dull the pain and inflammation… but I knew “something bad” had just happened.

So when Dex began to wear off, PAIN moved in FAST. And every time by body wanted to cough, the searing pain was just unbelievable, unbearable. I’ve finally learned to start medicating quickly, not waiting to see how it bad it is. I’m now ProActive, not ReActive, as pain is difficult to get control of… So as I’ve mentioned before, I start with the lowest dose pain meds, to see what helps, so I don’t kill off my kidneys and liver… but Low Dose just doesn’t cut it anymore. I went back and forth with Tylenol, and Advil, to Flexeril to a 4mg Dex, with only little relief of the excruciating pain. So yesterday, my son drove me to Urgent Care, as I knew I needed to be seen. I’ve become such a “regular” there, it’s not even funny.

Exam, Xrays, discussion of my complicated situation. Is it bone issues? Is it muscular, nerve? OMG, the pain! And the result, yep, another fracture, crack, and of course nerves and muscles involved too. The Dr meeting with me was very thorough, (actually, she may have been an NP), so she said she will consult with Radiology, and send me an email with more detail…  She offered me stronger meds and I accepted, but haven’t used them yet, as yes… you know it… I fear new side effects.  But I think I will try Tramadol again, or maybe start with half a Norco, as regular Advil, Tylenol is a joke right now… oh, and the Pain Management Dr I met with last Monday gave me Gabapentin for the crazy leg nerve, Neuropathy pain… My medicine drawer is hilarious with all the bottles of meds~

In the meantime… suffer, suffer, suffer continues to be my middle name… but I am of course grateful for all the good times I am still able to have, all the amazing people in my life caring about me, and for amazing insurance that allows me to just show up and be treated in detail… Yes, perhaps 9 years of Myeloma ravaging my body is catching up with me…

Here I am at Kaiser Urgent Care
just before Xrays,
showing off my crazy bruise from my last blood test.
 And yes, I always toss a little make up on and fluff my hair,
as that just makes me feel better
no matter how awful I am.
I always try to find humor and light 
in all this crazy darkness…
I was in intense pain here… but-
“Fake It Til I Make It”, is another motto of mine :))

Thanks myeloma for my crazy making, bi-polar life. Things are certainly never boring! But I would prefer less drama, and more calm please…

Up next on Monday: 40mg Dex steroids, Velcade shot, Cytoxan Cyclophosphamide pills… hmmm I’ll be brave and take 5 this time… or should I be really brave and take the full dose of 8?? I wonder why it’s not one a day, like Revlimid, Pomalyst?? Must be the all at once punch that makes a bigger cellular impact??..