Sick of Being Sick and Other Myeloma Nonsense

7.28.18

Yes there was a time in my life when I was well. Well all the time. Took my body and body functions for granted. Living a “normal” life, with only the “regular” annual bugs parents and kids get. I really never thought about illness or sickness, only when we were, and then we all got over it.. Never thought about what it would be like to feel “sick” and exhausted all the time, and never occurred to me to “plan” for being sick.

Now that’s all I do. Feeling sick, being sick, thinking about illness and sickness, avoiding being sick from unplanned cootie contamination, or planning when I’ll be “sick” from medication side effects. Even after 8 and a half years, it’s still so strange to for me to “have to” focus on, plan for, be aware of sickness and feeling sick. Just so weird still. Spins my head being “sick” each week. Sick for me is unrelenting fatigue, achy, weak muscles, joints, nerves, bones, headaches, bloating, swelling, some GI issues, all around malaise and so little energy. And then on top of the weekly “predictable” medication crash, there’s the surprise sicknesses, or new yucky side effects, new pain, fevers, from myeloma morphing, mutating all the time, and daily, weekly, monthly, myeloma treatments.

I’m still reeling from my July 3rd broken rib incident, and then the awful, horrible, painful, pain beyond pain, high feverish reaction to my first Zometa infusion July 10th. I finally began to feel better this past week, and 40mg of Dexamethasone steroids helped. After about 9 days the fever was finally gone, and slowly the crazy achy bone, muscle, joint, nerve pain lessened and subsided. I still can’t believe all this happened to me. I thought I’d have the “normal” Zometa side effects for a few days, not the EXTREME torture I had for 2 weeks! I just don’t see myself as a “sickie” and I just can’t stand feeling unwell all the time. Just not me!

So just when I started to feel relief and think I’d get a break this last week of July, before my next round of chemo July 30th, boom!, body sabotage hits me again. My blood tests reveal I’m Neutropenic AGAIN. Yep, did my monthly Labs yesterday, July 27, and in no time heard from my Dr that I’ll need to start 3 days of Neupogen Zarxio injections, as my WBC is 2.0 (4 – 11 normal range),  and my ANC is .71 (1.80 – 7.70 normal range), yes “point” .71

Whoo hoo. Isolation Bubble Time… again…, no events, no eating out, no crowds, no fresh fruits and veggies, etc etc etc Hello Neutropenic life, Neutropenic diet…  Time to grab some belly fat, and stick that needle in. Just like tossing a dart at close range :)) Get in my cells magical Zarxio and pump up my immune system!

OMG, just read the fine print on this!
“Derived from E-Coli”!! Whhhaaaattt??!!!
What the Heck! Medication to build me up
is derived from sickie cooties!
Ugh, have to read up on this for sure!

================

Forgive me if I sound whiny, as I am always super aware of how awful “It Could Be”, and how challenged so many of my myeloma pals are, not to mention 3/4 of the world! But all this affects me so much, as I was so well for 48 years of my life. And just as I was getting over the broken rib pain, and the crazy Zometa reaction, our A/C died when it was 110 for days, my dryer tried to start a fire and burn our house down, I walked into a black widow web, and was almost bit, and one of my horses was on the verge of Colicing in this horrible HOT weather, and I have more and more “caregiving” tasks for my ol hubby, as he too, is being sabotaged and betrayed by his body…but that’s a whole ‘nother blog…

As a Counselor for 35 years, I was focused on helping others analyze and solve their issues, and I was super focused on my family life, so I didn’t focus on me. I didn’t need to. Now, sadly, myeloma “forces” me to constantly think about my situation, and constantly “feel” all my physical side effects. I’m “sick” of me and my issues… 8 years, 7 months is a long time… soon 8 years, 8 months… is a long time to be focused on staying alive, a long time to be treating incurable cancer, a long time to feel unwell, and a long time to always be surprised by unwanted side effects… 8.8 years… wow… waahh, waaahhh…

Anyway, here’s my Neutropenic labs:

And the first hint of myeloma on the move-
I’ll see all my labs on Monday, July 30
at my next Dr appt and Darzalex infusion
And lest I forget, 8 years ago TODAY, July 28, 2010, I was finally released from City of Hope hospital, after being there for all of July, for my Autologous Stem Cell Transplant. How fitting that I’m Neutropenic this month, and have had so much myeloma DRAMA, right! Just a “little” reminder of what I went through 8 years ago! So no complaints, as I haven’t been hospitalized since then, and I hope to be able to continue out-patient treatment for a long time…  
This was an amazing crescent moon earlier in the month
with Venus close by!

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