Holding Steady… Well Kinda…

11.7.17
Hello November!

Yes, it’s been a long and winding road…
The months roll forward, and I marvel at the progression, my progression. Not such a big deal to the “well person”, but to one who’s cellular clock is an internal ticking time bomb, the progression month to month, year to year, is always so miraculous and worth daily notation and celebration! As I slowly pack away my Halloween decorations, I can’t help but wonder… will I be able, or around, to unpack them next year…

I took blood tests last Thursday, Nov 2 for today’s monthly status check. Surprise, no surprise, my WBCs are almost Neutropenic again, as I completed my 21 days of Pomalyst that day. I’ll find out today at my monthly oncology appointment, if I need to start a few days of Neupogen/Zarxio shots. No problem with that anymore. I actually look forward to the immune system boost, and I’m now a pro at self injection lol. Grab that tummy chub, and boom, done!

WBC = 2.4 (normal 4 -11)
ANC =  1.2 (normal 1.8 – 7.7)
What’s yours?
So guess what happened to me? After a sleepless weekend spent celebrating my 40th (what?! omg!) High School reunion, I woke up Monday morning with a headache and sore throat. Yep, I bit the dust. I’ve got a “little” head cold. But my minimalist immune system is rallying, and I don’t have a fever, and hopefully won’t get worse… Had a wonderful time connecting with ol friends and classmates. Can’t believe I’m this “old”. Life just moves at blazing speed forward while we’re living life. Then suddenly a milestone event happens like this, and it’s just shocking to realize where I am now. Don’t most all of us still mentally feel so young, but the mirror and calendar says different…
 Here I am, early high school days, 
with my beloved first horse “Stoney”

One of my fave girlfriends way back in Elem, Jr High.
Linda and I were “ponypals” back then.

 2 of my fave twinsie girlfriends from High School-
Such wonderful memories.

I would post more, but not sure if everyone
wants to be on international social media :))

Beach weather was awesome, I would have loved to stay the day.
But when I woke up, I could feel my body betraying me :((

To be continued… when I return home from my Dr appointment… 
I wonder what my Thursday Nov 2 labs will reveal? What’s your bet? Will my IgA and M Protein be up, down, or similar to last month? I’ll post my stats later today.

What a way to live, right… wondering if my triplet cocktail of Darzalex, Pomalyst, Dex steroids is still pummeling myeloma. Or if myeloma is stealthily mutating, and outsmarting these amazing meds, which have been saving my life since March of this year… we’ll see…

11.8.17 UPDATE


Yes, I am still battling this “little bug” that invaded me, but so far, nothing too dramatic. For someone with a “normal immune system”, they’d probably take a few Tyelenol, extra Vitamin C, Claritin, etc, and go on to work and “normal life”. Well, I’m doing that to an extent, but taking note not to do too much, so as not to make things worse. I comment about this, as I am really proud my weak immune system is battling, and I’m not the “typical myeloma patient” who winds up with a horrible respiratory infection, pneumonia, and then in ER.

And now for my monthly myeloma stats. Pretty proud of these too!

Abnormal, but not deadly
Still amazed how well Darzalex, Pomalyst, Dex 
are doing for me. Seriously, look at January!
Not bad, but not normal of course
And finally glad to see that my
M Protein is only lurking, but not showing up … yet
(see the last result box ^ )

Yes, it’s November 2017, and 8 years ago this month, Doctors were letting me know my blood tests were showing “something very unusual, that needed further testing”, that something was really “not right” with me. Bleeding out “everywhere”, super Anemic, super low WBCs, “unusual Protein levels”, extreme Fatigue, Breathlessness, strange Aches and Pains, getting Sick often, a few Bruises here and there, and fuzzy mentally…

I just thought my life was too busy, too much going on… NEVER IN MY WILDEST THOUGHTS, did I think I was REALLY SERIOUSLY SICK…

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