Trying to Navigate 2 Incurable Illnesses…

5.9.19

Hello May
Hello Loyal Readers…
I’m just too beat up to post… but I will, as I so appreciate your caring and interest in my journey, and your sweet comments!
Briefly…
Friday May 3, was Jim’s birthday… he fell, in the kitchen, front first… 
Saturday May 4, too many challenges, too much reality, too much sadness… 
I finally committed to trying a Caregiver
I called
Monday May 6, Chris, Jim’s Caregiver, Personal Assistant and “Butt-ler” began
He’s awesome, and wonderful, and caring, and extremely helpful!
So grateful for him.
Timing is everything in life, right…
Monday, May 6, I had my usual 40mg Dex Steroids, 2 injections of Velcade, and 400mg Cytoxan, 8 capsules. 
Monday evening, took our beloved Abbie to the Vet. She too is not well…
See the IV fluids she’s receiving here
Tuesday May 7, Full Body Pet Scan. 
Prior to, I had to follow a low glucose, low carb diet for 24 hours, then fast 8 hours prior to the Scan. My appt was at 2pm. They test my glucose level first, which was in the 80’s, so I was fine. Then they inject me with a Radioactive Glucose solution which “lights up” the all the myeloma hot spots, lesions, tumors, plasmacytomas, and whatever else they are looking for. Scan went fine, but as the evening wore on I began to feel the full effects of Monday’s chemo and steroids, mixed with the Radioactive Glucose solution. I had a yucky sweet taste in my mouth all night, and increasing nausea. I think the 2x shot of Velcade is causing me more nausea, on top of this solution. Yuk!
Hello double shot Velcade every Monday
Hello Pet Scan
window to my bone realities
Early Wednesday, May 8, around 5am I was suddenly awakened with an extreme “cleanse”. Felt awful, exhausting, but always good to be “cleaned out”, right. 
And another cleanse today.
Today, Thursday May 9, blood tests for my Monday, May 13th Dr appt. 
What an appt that will be with Myeloma status results AND Pet Scan results… 
Maybe I’ll post again then with results. Dex will prop me up, and give a fake ok for a few hours.

And my CBCs, WBC result just came in… yep… 1.7 (normal = 4 – 11) 
Awesome
Don’t know how I am functioning 
A friend asked me- “do I ever get to feel good”?… 
“Feel Good”… hmmm, such a deep question now. 
Can you imagine living life
Can you imagine navigating life with 2 terminal, incurable, life stealing illnesses. 
I can’t, but I am. 
I used to be such an optimist
Now I am a numb realist
I compartmentalize everything
I just go through the motions of life
I still (sometimes) find joy and fun- I make myself
But with a heavy heart and dark cloud shadowing everything, always
These words-
Hope, Strength, Be Positive, Optimism, Fight, Battle, Warrior, Survive, Brave, Hero, You Can Do It, Keep Going, Have Faith, Celebrate, Be Happy… 
Words I used to be able to relate to, feel in my core… But not so much any more. I am so detached from myself now. I am so numb. I have to be, just to get from one task to the other, and through one day to another. 
I just do what I have to do, because it is the Right Thing To Do. I Just Do. Just Do It, whatever the “Do” is…
This is so not me, the me I used to know and be. My “me” is so depleted, so sad, so in shock. 
It will not all be ok. 
It will not “get back to normal”
It is just a terrible tragedy on all levels
A sadness beyond what I ever expected in my life
My heart aches for all those suffering with body and life betrayal out of their control
Thank you for caring as you do, and reading about my life