On and On and On to Infinity Goes Myeloma

Hello 10.6.16

I’m not feeling great today as it’s chemo/steroid crash, living in the bathroom day… and I’ve had this intense sharp weird left side ribcage bone pain that’s really sucking the wind and life out of me. I can handle a lot, but truly, pain is so debilitating. Especially “unknown” pain. It’s really awful and has gone on for days and days or over a week… It’s all a blur now… I’ll tell more about it below…

Not much new to report regarding my treatment success, (or not) status…
I’ll update my monthly labs next week. So for my current status, please see my previous post just below with all my details and numbers :))

And how I try to be strong all the time, but
being a sickie is so exhausting and such a waste of life…
This past Mon and Tues was my last Kyprolis infusion for this current (Sept) cycle. Cycle #12, I think. 3 weeks per month, 2 days per week, of Kyprolis/Dex. (Can you even fathom being sick, and being in treatment for over 6 years? So surreal!) It will be interesting to see how the doubled dose of Dex steroids (new, stronger regimen this month forward), will affect beating back Myeloma. Thankfully, jumping from 20mg Dexamethasone to 40mg, wasn’t as dramatic as I expected (side effect wise that is). Hopefully, that’s a good sign?! Or am I just jaded now to just feeling sick all the time :(( This may lengthen and intensify my “crash” period, but we’ll see. But most importantly, is “Double Dex” in there scaring the heck out of the Myeloma cells and debilitating their powers? Hopefully Kyprolis likes the increase too, and “2x Dex” gives Kyprolis double the power. My labs will tell the story later this month. Stay tuned :))
Get in there “good poison”
and do your thing!
Let’s pummel Myeloma
As bad as I feel about my circumstances, I always get a wake up call when I’m at my chemo lab as there are many “sick looking and feeling” patients there. I truly feel so bad for them, especially for the ones new to their diagnosis and treatment regimen. If we chat, I always give encouragement, hope and promote the fight! On my “good days”, I don’t really look like a cancer patient on the outside, and no one really can wrap their head around how sick (and incurable) I am on the inside. Myeloma is so weird in that sense (for me and many other Myeloma patients). I feel like I always have to give “disclaimers” about my circumstances, status, appearance, etc. “Yep, been in treatment almost 7 years now!”…  “Yep, Myeloma is incurable”… “But wow Julie, you look so good”… “Your hair, wow, your hair looks so good”… “You don’t look sick”… “You don’t look like you have cancer”…  “You’re so positive and so full of energy”. “Wow, how do you do it”! Blah Blah Blah. How? How do I do what I do? I force myself to be ok. I force myself to appreciate every little thing about still being alive. I force myself to get up, fix up, get dressed in a fun theme, put make up on, style my hair… smile, laugh, smile, laugh and deal with all this shizzzzzzz. I’m friendly and outgoing naturally. I bring “the party” to the chemo lab. And for sure let everyone know that on chemo lab infusion days I AM PUMPED UP ON MEGA STEROIDS!! So that explains why I am able to function as I do. Steroids are amazing and crazy for sure. I’m sure they are wreaking havoc on my body in so many ways, but at this point in my treatment and life, I’ll take the 2x Dex pump up and enjoy the ride for 2 days!

So I have this weird random sharp stabbing achy painful hurt, take your breath away feeling in my left rib cage area. Yes, I do things I shouldn’t (animal chore related), but seriously, nothing extraordinary. Except about 2 weeks ago Jim and I tried moving a file cabinet into the house, and I moved, lifted tires for my VW, and did my usual horse poop raking (for daily exercise), and various other “normal”, minimal, nothing extraordinary chores. Fortunately our kids always come over and help, but I didn’t think I had injured myself in the process. And who knows the other things I may have done to injure myself, like basic bending, stretching, laundry, house chores, ranch chores, etc. But seriously nothing extraordinary, as I simply don’t have the strength nor energy to do much of anything, ever! I push myself daily to do little things and just move around, doing slight things to “exercise”, because just sitting and resting all the time isn’t good either. What in the world, how in the world, why in the world am I suffering so much, so often :((

This past Sunday this intense sharp stabbing pain took my breath away. Literally, I couldn’t breathe properly from the pain. I began to worry I may have really injured myself, or had a rib puncturing my lung or worse, and… super scary thought…, maybe Myeloma was really moving in, and I was developing a Plasmacytoma tumor or broken bones due to Myeloma’s 7 year progression inside of me. So I went to Urgent Care and had xrays done. Fortunately the Dr did not see anything broken, but did suspect bruised ribs, soft tissue injuries, pulled muscles, pinched nerves, etc. What the heck! And it’s not any better… I can’t believe how awful I feel right now, with the combined chemo-steroid crash and this incredibly painful achy rib cage. Seriously life… why??!!

3 years ago today, my sweet lil “Bucket List Bug” was delivered. What a fun adventure it’s been and having this lil throw back to my adolescence has brought me a lot of joy and laughs. I don’t have the energy to drive her much, but just knowing I have her, makes me smile. For those new to my blog, I spontaneously bought a replica of my 1972 VW Bug, back in October 2013, when I came out of remission and started back full throttle in treatment again. I realized it was time to begin paying attention to my “Bucket List”, and doing the few things I could. If you want the whole story, just look for my Sept/Oct 2013 posts on the right side menu of my blog.

Here’s my lil Bucket List Bug being delivered
October 6, 2013 
3 years ago today!!
And as a little symbolic anniversary present to me, I recently bought “real” white wall tires. Honestly, back in Oct 2013, I didn’t know if I’d see Oct 2016. I’ve learned to do what I can, when I can, and do little things that make me smile. Lesson: Make every day count (as much as possible). Live life on your terms, on days you can. Do what you can to make a difference in this life. Smile as much as you can, and process the fine line between the tragedy and comedy of life. Let stress, anger, anxiety, plans, disappointments, frustrations, etc, go. Just let it go.
It’s taken me all day to post this, as the rib pain is so intense, and the chemo/steroid side effects have kept me in the bathroom on and off alllll day. Should I cry or laugh? I shake my head, cuss a bit, and laugh at the ridiculousness of my life’s circumstances… 
Here’s lil Bucket List Bug with her new whitewalls!
Notice the blue tint? 
That’s the protective film still on, and so crazy
how it matches the paint color!
And finally, no matter how I suffer, no matter how much I have to endure, no matter how awful I feel, no matter how often I question my status and options… I am one of the lucky, blessed, fortunate ones to still be here. This past week, our Myeloma community experienced an immeasurable loss. My “blog girlfriend” Lizzy Smith lost her battle, suddenly. I was shocked to read of her passing. I don’t know the details, but read she was hospitalized with pneumonia and passed suddenly. She’s fought since 2012, endured so many treatments, 3 stem cell transplants, clinical trials, yet lived life to fullest with her family. Lizzy contributed so much to our online community, blogging, writing, speaking, raising awareness for so many Myeloma issues. She and Jenny Alstrom created the Myeloma Crowd, an invaluable, wonderful, amazing resource for all of us! I never actually knew Lizzy personally, but like so many of us spinning in this crazy Myeloma vortex, she was a sparkling gem and her loss leaves a permanent dent in all of us, just like Pat Killingsworth
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!