Sick of being Sick, but I’m still Here!

Hello March 5th of year 5.

Thought this was a great poster explaining crazy Myeloma:

Today begins cycle #5 hundred, thousand, million something of Revlimid and Dexamethasone. Each month now I am pairing more Rev 15mg with less Rev 10mg to hopefully get to full dose 15mg without side-effects worse then I have now…

But having said that, I’ve really realized that my functionality in life now is totally controlled by my GI system! “Normal” people can go (lol, no pun intended) about their daily routines, without worrying much about when, where, what, how, what if, of their GI functions. Me… ugh, my whole life now is controlled by thinking I might be ok, scheduling things, then last minute cancelling because I wind up being owned by my lower GI’s angry explosions! (Sorry). And coming off my one week chemo break, I’m realizing it’s not always the meds causing my issues… it’s the cancer itself creating havoc in my system.

Geezzz, back in the day, without a thought of “it”, I would be away from bathroom totally. Backwood bushes never scared me :)  I used to be a remote-area backpacker, horseback rider, hiker, skier, biker, walker, beach/lake sporter… not to mention, all my career functions, family events, socializing, etc. Back when my GI system was “normal”, anything, anywhere, at any time was possible! Now, here I am, posting this post on a beautiful blue-sky day, inside my house with that stomach yuck, and angry GI, writing between visits to my bathroom. Ok, enough of this.. you’re probably all sick of hearing my poo rants, and I’m going to go drink a bottle of Imodium lol !

Here’s my recent numbers: 

WBC’s = 2.5 (so low- why I feel so yucky and fatigued), 4 – 11 = normal range
Platelets = 118 (low), normal range= 130 – 400
M-Protein = 1.20 (yippee! .05 lower than last month), normal = zero
IgA= 1250 = (yippee! 200 points lower than last month), 70 – 400 = normal range
Beta-2 Microglobulin = 2.1 , normal range= .8 – 2.2
ANC = 1.6 (low), normal range= 1.8 – 7.7

Many more stats, but those are the ones I watch the most.
So a bit of good news, thanks to Rev 15mg. My numbers are roller-coaster style, but that’s ok. As long as there’s not a steady month after month climb, I’ll take this- awful side effects and all. My IgA is still triple the high end of normal, but I AM NOT wanting to be more aggressive with chemo treatments, as I would then have ZERO quality of life!

So I do what little I can do, when I can do the little I do. I plan, I cancel, I plan, I attend… then rush home to my bathroom! Such is my life now. But, I have a life and I’m here 5 years after diagnosis! I help a few students each week, and help rescue animals when I can. Since I’m home so much now, and travel is currently out of the question for me, I convinced Jim to let us save another life, needing a home :)

 Just look at that darling face! 
She’s been at the shelter since Thanksgiving! Owner surrender :(
Poor girl, no one wanted her, and her time was up…
We’ll be picking her up today… if I can leave my own litter box!
And so March is Myeloma Awareness Month… ugh… I’m tooooooo aware of Myeloma, but too many people haven’t clue what it is, and how devastating it is…
http://myeloma.org/Main.action

I am VERY grateful for all the new current research and new myeloma meds being developed! Keep up the good work Pharma researchers and scientists! I so appreciate you working to prolong my life!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!