Some Pretty Amazing News!

10.27.17

Hello and almost good-bye to October!
As the months fly by, I marvel they do. Who would have thought I’d still be alive. Sorry, I know I keep mentioning this, but in the Myeloma world, each day is a gift and a surprise.

Yes, I process my treatment success everyday I wake up. For those of you that follow myeloma blogs, chats, research, support groups, etc, you know exactly why I feel this way. My heart hurts for those that suffer more than I do, and for those that have not had the treatment success I have. Believe me, I am grateful for every waking moment I have, no matter what side effects I am enduring. As it’s said, for most anything in life… It Can Always Be Worse.

I had my Darzalex infusion this past Tuesday. This is my 2nd with the monthly protocol schedule. Took my weekly 20mg Dex steroids prior to going, and as always, I show up to the chemo lab in fine spirits. Too fine for the chemo lab. So ironic! But I temper my exuberance, and try to “act appropriately”. As always, I make new friends, and see buddies. The time flies for me, as I read online, chat with the staff and other patients, and consider taking a nap when the “Bag O Benadryl” hits me. But this week, it didn’t put my lights out, just made me feel slightly goofy and groggy.

Here’s my myeloma buddy Gary, who also happens to be my neighbor (yes, both of us with myeloma, within 2 blocks of each other!). Tuesday was Gary’s first Kyprolis infusion. He was diagnosed about 6 months after me, and we’ve had very similar treatments. He’s IgG Kappa Light Chains. I’m IgA Lambda. Yes, neighbors… and same medical insurance, same medical team. Both of us having our Stem Cell Transplants in 2010 at City of Hope. Both of us very similar treatment responses too. Process that!

After my Tuesday infusion, I have about 36-48 hours of feeling ok. Then late Wednesday, and for sure when I wake up Thursday, the yucky begins. Blah, lots of blah. Headache, bone aches, skin aches, dizzy, nausea, bloated, cranky, some neuropathy in my feet and hands, etc. But overall, not horrible. Just slightly miserable. For the “normal person”, it would be like getting, or getting over the flu. But I know it will pass, and I just deal with it. As I’ve mentioned before, it’s crazy KNOWING I’ll be “sick” once a week, for a few days. Predictable, though I never know to what extent. I mention all of this, as prior to Tuesday’s Darzalex, I managed to fit in several fun events, and even survived my Dental cleaning without getting “cross contamination cooties”! I was supposed to “pre-med” for the teeth cleaning, but when I read up on Clindamycin side effects, I opted out. I took my chances that my immune system could battle whatever cooties were stirred up, and sure enough, so far, indeed I am ok. Shocking!

Little did I know HOW STRONG MY IMMUNE SYSTEM WAS! Take a look at these labs I did on Monday, for my Tuesday Darza infusion. Haven’t been this healthy in a decade! Unbelievable! Maybe my viles were switched with a “healthy” person ;)

Whoa! What’s going on here?! Seriously unbelievable stats! 
I’m winning!!! WhooHoo :)) 
And just in case you missed my previous post, with my wonderful IgA stats, here they are again. Out of the “normal range”, but hey, I’ll take this, over what was going on earlier in the year, before Darzalez, Pomalyst, Dex steroids. Sorry if I am repetitive in my posts, but I’m fascinated that, #1, I have cancer, #2, I have incurable Myeloma, #3, that I have been in treatment for almost 8 years, #4, that I am still here, and in the “relative good health” I am in, #5, that the amazing world of myeloma research keeps coming up with new treatment options for me, that, #6, is tolerable and livable, with some semblance of quality of life, and #7, I have a fantastic medical team that takes such wonderful care of me, extending my life beyond expectations! 
Speaking of that, in the previous week, I managed to get out and about have some fun adventures! 
 Alissa, Nala, Me, Hanna, dear friend Kathy and Portia
all enjoying the doggie version of Relay for Life:
Bark for Life! 
 Alissa and Nala as “super girls” 
Me and Hanna, just being us 
 ========================
  Next day, was an Oktoberfest, VW show
Remember my cute lil “bucket list Bug”
Well I made it! 2 events in one weekend. 
I was exhausted, but made me feel almost “normal”…

 Aren’t these Bugs just so cute! 
They were part of a car club called the “Smurfs”!

And surprise, surprise, my incredible chemo pharmacist
Dr Henry Chen and his family suddenly appeared!
We were both so shocked to see each other there.
He’s just the most amazing supporter (and Dr Pal, Dr Jen too!)
So genuinely caring for all us patients!

Perhaps I’ve mentioned it before, but Dr Henry and I discussed the fact that I’m the Darzalex “pioneer” at our Kaiser facility. So far, I’m the only patient that has “tolerated” this protocol. I’m pretty darn proud of that!  
So much more to say and share, but my headache and aches, metal mouth and nausea, and other crash symptoms are getting the best of me right now… so I’ll end here. But again, I can’t say it enough, how grateful, thankful, mystified and thrilled I am to share my amazing status and positive updates with you and the world. Thank you for checking in, caring and commenting as you do. I may not “know you”, but I sure do appreciate all my readers.

Happy Halloween to those that celebrate

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