Waiting for News… Always Waiting and Wondering…

Hello September! How can this be??

So I did my labs on Thursday Sept 7 and received some of my results later that night. With Kaiser, good news shows up online, but with the most important ones, the myeloma markers, I remain in suspense until my Dr appointment Tuesday Sept 12. Myeloma is such a waiting and wondering game on so many levels. Always waiting to know how I am. Always waiting for the “ball to drop”. Always wondering if my treatment is still working. Always wondering if my cells are still dominating or if myeloma is winning. Always wondering… am I ok. Will I be ok. Such an “out of body experience”, for something that is an “in body” experience… crazy way to live… But I am living and that’s what matters!

Surprisingly, I saw that many of my CBC’s are pretty decent. But as expected, my WBC’s are low, “Neutropenic low”, as I am at the end of my 21 days of Pomalyst. My Dr and I have my Neutropenic status down to a routine now. She has me do 3 days of Neupogen-Zarxio shots immediately following my 21 days of Pom, and that bounces my WBC’s up, along with the 7 day break from Pomalyst. It’s amazing how drained and depleted I feel. It’s so hard to describe FATIGUE to a “normal” person. So different from “tired”. Depleted is really the best adjective. But onward always. Hello my friend Zarxio growing WBC’s, boost me back up.

Whoohoo… one of my myeloma markers slipped through the system. Actually, maybe it’s not a “slip” as it’s in the… sit down for this one… it’s still in the NORMAL range. My Beta 2 Microglobulin is on the precipice of  the high end of normal, but this still counts as normal! I’ll take it, compared to earlier in 2017:

Range = 1.0 – 1.8

Take a look at where I was in 2009 at Diagnosis, then again 2013 when out of Remission, then the scary levels at the beginning of 2017!

So using this one test as a hopeful indicator of my remaining lab results… I’m optimistic that my IgA, M Protein, etc, will also be ok, thanks to Darzalex, Pomalyst, and Dex!

I attended my local myeloma support group meeting today. I am always so shocked and amazed at the variance of myeloma’s vengeance and presentation. I met a man a few years younger than me who has been dealing with myeloma since 1999!!! Whaaaat??!! Nope, that’s not a typo! 1999!!! He was “treated with the original Thalidamide, and a few other things”, he “thinks it was Melphalan and bone strengtheners”… and then he stopped treatment when his numbers were good. Stopped treatment!! Yes! For years! And he said he really didn’t think about it much, until he began bleeding a lot, hemorrhage type bleeding, and was extremely fatigued, became anemic, etc. Incredible! We talked about our early symptoms of bleeding out, anemia and lovely volcanic diarrhea on Revlimid. He is in the process of considering meds vs stem cell transplant. Wow! I have read of other MM patients with years of survival in the double digits, and I am both amazed and energized by this, as I approach 8 years of survival!

Every night, after the blistering sun sets, I head outside to do the
horse arena clean up. The night air is beginning to calm the angry heat
of the day. I hear the birds settling in the trees for the night, the
barn owl’s plaintive “whoo-hoo”, the soft crunching sound of the horses
scratching each other’s annoying fly bites from the day, and sometimes, a
gentle rustle of a breeze in the trees, cooling the parched earth….
And then…. the Gift of the Moon! Rising, blazing into the night sky, a
flashlight from the heavens, lighting my way, energizing me,
reaffirming “I’m alive”! It’s really so magical to me. Moments like this remind me how grateful I am for the success of all my treatments.

Moonlit nights have always taken my breath away. This beauty gives me pause to process my life. Back in the day, we would take the horses on moonlit trail rides. It was so incredibly magical, that flashlight in sky, lighting our way. I always felt so alive, the quiet of the night, the soft impact of hooves in the sandy soil. Invisible wildlife observing us from the safety of their hideouts. Crisp night air, filled with sagebrush scents. Humans connected to horses, in an unspoken language.
Back then, my thoughts only in the moment, pure joy, happiness and awe. Now, on moonlit nights, gazing at the starlit sky, I try to process my circumstances. I still can’t. I still don’t comprehend and understand what has become of my life. I think about my daily treatments keeping me alive. How do these chemicals work to keep me alive. How am I still alive with all these crazy cellular mutations happening inside of me. How have I been able to withstand and tolerate all these chemicals for 7 years, 9 months, and be as “functional” as I am? How did myeloma happen to me? What will this week, month, year bring. What will I find out on Tuesday Sept 12? Hello Moon, thank you for energizing me, making me smile as I reflect on all the memories we’ve had together, overwhelming me with the vastness of this life, making me so feel alive. So grateful.

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