Mystery Status!

4.27.17

Hello everyone-

For the first time in a long time, I don’t have any dramatic news to report, as I’m waiting to receive my dramatic news! See, this was my very first week without Darzalez! Protocol for Darza is weekly infusions for weeks 1-8, then beginning with week 9, we get a break and begin infusions every other week. So who knows if myeloma is still being pummeled, or this treatment break may be fueling myeloma’s power? I have no idea, as I was not “required” to do my regular weekly labs, since I had Tuesday off from Darza. Doing weekly labs has become like a “security blanket” for me. I really look forward to knowing what story my blood will reveal weekly…

But alas, I’m not chemo free, or on a full treatment break, as I began my current 21 day cycle of Pomalyst, a week ago. But with my looooow CBC’s, we opted this cycle to alternate Pom 2mg with 3mg. So again, it’s a wait and see how this reduced potency affects myeloma’s powers. Additionally, since my myeloma markers from earlier in the month were so impressive, we’ve downsized Dex from 40mg per week to 20mg per week, with the option of 4mg on a day or two following Darza, if my side effects become overbearing. But I must confess, I haven’t taken my friend Dex yet this week, as I packed a few appointments and events in this week, and couldn’t figure out how to do these things, knowing the Dex crash would hit in the middle of my plans. I’m laughing as I write this, as it all seems so surreal and absurd!

Seriously, how crazy is it, living day to day, week to week, month to
month, etc, having little control over what’s happening to me with side effects, and not
knowing if cancer is revving up, staying the same, or still running
scared from treatment.  If I could, I would have blood tests weekly for
the rest of my life, as that’s really the only way I know what’s
happening internally with me. There are times when I feel ok, and think I
am doing well, and think my status is stronger, only to find out, that’s not
the case. And the reverse, there are times when I feel lousy and think I
must be headed in the wrong direction, and I find out that I am
actually doing ok. No doubt myeloma, you keep me on my toes, with no room to relax. 

Tomorrow is the annual SCT – BMT reunion at City of Hope, where I had my SCT July 2010. I’m coming up on my 7 year SCT birthday-anniversary. Wow! And this event is huge. Hundreds, but looks like thousands, of people attend. It’s a pretty big media event too. And our amazing doctors, nurses, hospital staff etc also come, to celebrate with all the patients. They give us big buttons with our survival months or years noted, a Tee shirt commemorating the event, and host a huge luncheon with speakers and entertainment. Very cool event. Couldn’t be on a Dex crash for that, right!

 Here I am at my VERY FIRST 
SCT Reunion, April 2011
Look at that crazy hair growing back
after my October 2010 buzz!

Finally, adding to the list of unknowns, and compounding my “Mystery Status” is the outcome of my long overdue Skeletal Survey – Bone Scan that I FINALLY did this past Tuesday. So I took advantage of my little Darza vacay Tuesday,  and I went for the  bone xray scan. Yes long overdue, due to me. My Dr had scheduled me for that way back in December, but with not feeling well from crazy side effects of escalating myeloma (before Darza’s success), I hadn’t felt like doing it. I know, geeezzz, not a huge deal, but actually it was, as myeloma’s chronic fatigue can be disabling. And I was having side effects from Velcade, higher dose Pomalyst and high dose Dex, etc… Anyway, I did the scan on Tuesday, so the waiting game begins. Will the scan show solid healthy bones, or will I be thrown another curve with bone lesions? Plasmacytomas, I believe is the official term.

My next Darza infusion is May 2, so I’ll do labs on May 1. Whew! Status check coming soon! But my next Dr appointment isn’t until May 16, to discuss EVERYTHING, and find out how I’m doing with this new protocol of a week’s vacay from Darza, and to find out the results of my scan. You think I can wait that long for the results? Nope, you guessed right. I’ll be pestering my nurse on May 2 to consult with my Dr in advance :)) I let you know, when I know, when all these myeloma Mysteries are solved…

No matter how ridiculous my situation is
Nature always reminds me how fortunate I am 
To Be Alive!
Hello perfect little ladybug!

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