7 Months, Infusion #17, Living Life Grateful and Suprised

Hello 8.27.17

I just counted on my fingers to confirm my math. I’ve been doing the Darzalex, Pomalyst, Dex steroid triplet cocktail for 7 months now. Wow! Infusion #17 will be this Tuesday, Aug 29. How can that be? Seems like I just began this protocol. We all say how fast life speeds by, but really it does. And when I write this to you, it sure confirms how, regardless of what is happening to us personally, the Universe speeds onward, propelling all creatures great and small, forward. Moving, going, being, doing, living… forward.

Looking back, I laugh at myself for all my treatment fears over the last 7.8 years. I often feel silly for how overboard I am regarding worrying so much about potential new side effects, with potential new treatments. It’s not the CHANGE of treatment that so much bothers me, it’s the UNKNOWN of how my body might react to the new meds. Yes, looking back, I should have braved up sooner over the years and switched treatments prior to “letting” my IgA escalate as it did. But then again… I would say 7.8 years of myeloma survival is pretty impressive, so we’ve done something right :))

Prior to my current triplet of Darza, Pom, Dex, I managed to do quite well on just a doublet. First Rev Dex prior to SCT. Then 1 day of IV Cytoxan. Then 2 days of Melphalan prior to SCT. Then Rev alone for maintenance. Then Rev Dex again when I came out of remission. Then Kyprolis Dex. During those times, my Doctors did frequently discuss combining multiple “agents”, but I always balked at the idea, “fearing” triple side effects. Yes, I’ve had my share of crazy side effects, but my “method” did work, allowing me to isolate which side effect was from which med. But the question will always be… hmmm what would have been my outcomes, if I had tried a triplet sooner? I’ll never know, but I do think of it. Perhaps I wouldn’t be riding the treatment roller coaster as I have? Perhaps I may have had another remission? Perhaps my IgA wouldn’t have escalated as it did. But on the other hand, maybe I would have burned through more treatments sooner, and become refractory to more chemos, sooner? It’s crazy the zillions of “unknowns” in myeloma treatment! With all that being said, what I (and my medical team) have done is certainly a success, as “numbers don’t lie” right. The closer I get to 8 years, the more I soak up my survival success.

Take a look at these graphs, showing my myeloma roller coaster ride!

Pretty stunning how fast my IgA escalated late last year, early this year prior to Darza, Pom, Dex. Was I scared? Yes. Did I feel defeated? No. I always seem to be confident that there will be some sort of “magical medical recipe” that will come my way. And come my way it does, when I brave up. There was a short run with Velcade right when I began Darza, but that caused me this crazy intense stinging, burning, fever-like skin pain! I think I only did 2 injections of it, before we ditched it, and went back to Pom. So at this time, my “magic elixir” is still Darza, Pom, Dex, and I am thrilled, shocked, surprised and so grateful that myeloma is still very intimidated by this triplet! I better understand the cellular mechanisms of multiple treatments now. I understand that each medication treats differently on a cellular level, and each pummels myeloma from multiple angles, differently than 1 chemo with steroids does. Which med comes next I don’t know. But I am hoping beyond hope, that Darza, Pom, Dex will fight my fight for many more months to come!

So on my Darza off week, I try to fit in an activity here and there. Seems like there is always something happening every day, and FATIGUE is my main enemy at this time. Darza, Pom, Dex fortunately does not give me the ” surprise, extreme, volcanic GI” side effects Rev Dex did, and Kyprolis Dex to a lesser effect, so we are able to venture out a bit now, without extreme worry. I have, however, learned that Darza Pom Dex causes me a more “delayed” crash and unpredictable GI reactions, so I know that days 3, 4, 5, after my IV infusion, are stick close to home days, as sometimes… biology does surprise me!

Remember my sweet baby chicks we raised last year? One from a green egg, and one from a brown egg? Well the green egg chick, aka an Araucana, is a beautiful blonde, rust, golden Hen that lays green eggs now. The brown egg chick went from a charcoal baby to a stunning black and white spotted Rooster, who eventually became overly hormonal and aggressive and attacked us, thinking he had to protect his hens! (I think I told the story of him attacking me, in a previous post.) Well… “Domino the Rooster” had to go, as it was just too dangerous and difficult to go into the chicken pen. I posted and begged someone to give him a home, rather than BBQ him, but most did not want an aggressive, protective rooster… until a friend of mine in law enforcement arranged for Domino the Rooster to go to JAIL! Yes, Jail!! Nearby we have a jail facility that also has an Agricultural Program to help rehab the inmates, and they have chickens as part of the program! So Domino the Aggressive Rooster went to Jail this past week, and he’s “sentenced” there for life! But what a great life he will have, as he now has 70 lady hen friends!! So funny! And such a successful “re-homing”!

Baby Domino and Butterscotch-Rusty

Adolescent Domino and Rusty
before crazy hormones

Grown up tough guy Domino and his lady friend, Henrietta.
A neighbor gave us 3 of these beautiful black/gold hens
and 3 little grey Bantam hens.
7 hens to protect, plus boy hormones, did him in with us!

 Here’s doggie Paws and Nala
saying Adios to Domino
and off to Jail Domino went
Bye Bye Domino
You’re going to have a great life
Sentenced for life in Jail, with 70 hen friends :))
And the week prior, we managed to take a drive to the beach
For this, and my life, and my successful chemo treatments,
and everyone in my life,
I am grateful beyond words!

Thank you for reading, caring and following my crazy myeloma journey. 
Cheers to 7.8 months survival. 
Hope your journey is filled with happiness, joy, health and fulfillment.

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