Drinking Khemo Kool Aid forever!

Hello 11.6.16
Is it "Daylight Savings Time" for you? Not a fan here. I already miss the long days and multi-colored sunsets lingering long and late into warm summer evenings. I for one, would certainly vote DST away! 

So it's been a really busy last couple of weeks--- busy in an amazing, head spinning, I am so grateful to still be alive, thank you for appreciating my life's journey, kind of way!!

If someone years ago had described my current "bi-polar" lifestyle to me, I wouldn't have believed them. I would have laughed and told them they're crazy. Truly, every week is an unpredictable challenge, filled with medical and social extremities, deep life questions, challenges galore and ridiculous physical ups and downs. Every week is a crazy unpredictable, yet so predictable roller-coaster. By nature, I'm the no stress express, creating and desiring calm and predictability in my life and others' lives. Love love love fun times and mental challenges, but "bi-polar unpredictability"... no thank you, not my style! Never been an adrenaline rush junkie. I don't need heart-pounding entertainment, extreme excitement, extreme challenges or extreme physical unpredictability. But that's what life has dished out to me now, and I don't have a "choice"...

Extremities, no thank you! I'm not a jump out of planes, or off cliffs kind of girl. Galloping horses bareback through winding trails into the sunset, wind and manes whipping my face, was challenge and excitement enough for me. Rodeos, no thank you. Being a mom and career girl, challenge enough! I'm calm, analytical and pragmatic. Get it done. Accomplish. Move forward, my goal. I love fun and funny. Laughing and lightening the moment is me. Routine and predictability, with spontaneity tossed in, my style. I've never preferred extremities of any kind in my life, but that's my roller coaster medical life now.

No matter how many times I say it, no matter how many times I write it, no matter how many times I try to explain it to others, I just cannot believe the changes FORCED upon me. Yes, my life is incredibly WONDERFUL in so many ways, yet so AWFUL. My life is so BLESSED, yet so CURSED. My life is so rich with JOY, yet so CHALLENGED with unpredictable yuckiness.

It's the extremities in my life that have me laughing, crying and cussing. It's the so good, then the so bad that has me calling out for reprieve. On steroid days, I own the world. "I can do this!"permeates my thinking. I feel powerful, in control, hopeful, energized, positive and like me again. Then the crash creeps in and I feel tricked and so betrayed by my body. I don't wanna do this, I don't want to feel awful...again! I'm so tried of feeling like I have the GI flu every week. It's the extremities of side effects that are wearing me down. It's the constant "what if", what's going to happen, and when. I how will I feel. When will I crash. What will the crash be like. How awful will I feel. How long will I feel awful. How many times will I be running for the bathroom per day, for several days. Or not? I like being in control of my life and events, and that, has been stolen away from me.

YET...

I have so many AMAZING things going on in my life, that take my breath away! My few GOOD days are good! I have functional, somewhat "normal" feeling days a few times a week, after chemo and roids have passed through my system. I have days where I think I can "resume where I left off" prior to diagnosis Dec 2009. Although I have cancer, incurable cancer at that, I can feel strangely ok when propped up on high dose steroids, or after recovering from the evil chemo/steroid crash, right before the crazy-making cycle begins again. I have days where I think I can be the ol Julie again. But all days are still consumed in  complete disbelief!

As I've posted many times before, when I feel ok, I commit to doing things, going places, and engaging in life. Yet when I show up, I feel the necessity to preface conversations with a "movie-trailer" explanation why I appear so ok, while having terminal, incurable cancer. I shouldn't have to do this, but I feel the "need"  justify my ability to show up, apologizing for "how I look", and how "functional I am", in that particular moment. No one (except my immediate family), knows the back story to how I was able to show up, as put together as I appear. Few understand how sick I really am, and how "bad" my myeloma stats really are. I laugh, and say to those I meet up with, "Oh, if you only knew where I was, and what I was doing just this morning, or 24, 48, 72 hours ago". If you only knew my struggle to be here,... "Imodium and Pepto Bismal are my best friends", I wink.
Life isn't just show up and take part for me any more.
Life is: Can I even do this? How long can I do this? How will I feel? Can I eat? Should I eat before or during an event? Should I take that GI risk? And the ever explaining of why close contact, shaking hangs, hugging, breathing public air, is so incredibly DANGEROUS for me, and why just being in crowds could "kill" me.

So why this rant again...
I think my life and status confuses everyone that sees me publicly. From the chemo lab, to my colleagues, to friends and the general public. In my case, truly APPEARANCES ARE DECEIVING! I understand the confusion. How can I be so sick on the inside, and be so ok on the outside?
How?
It's just my nature to be engaging, positive, enthusiastic, candid, life of the party fun. It's just my nature to be ok. Because mentally, I am ok! It's cellularly, I'm not! And, honestly, no one but my family sees me on yucky days. No one but my family experiences my awful days. No one but my family knows where to find me, if they haven't seen me in while. No one but my family sees me looking and being sick and sickly. That's just who I am. If I can't feel ok, I stay home. If I feel gross and look gross, I stay home. It's just my nature to "pretty-up" and only put my best out there. If I can't do that, I stay home.

And so, here's the pictorial to go with the rant:
I have been so very fortunate to have been honored several times this year by my college and others. My 35 year counseling career has been a beautiful journey. I feel like the luckiest person on earth to have experienced all that I have professionally. I gave my life in service to others, and was gifted with incredibly enriching life experiences that made me a better person as I helped others become their better person. I've lived vicariously so many incredible human stories of ultimate challenge and success. I've been gifted with seeing hundreds, thousands, of student's dreams and goals come to fruition. I've been surrounded by incredible colleagues, with extraordinary skills and vision. I've been so very fortunate to have had the life I've had, prior to cancer bringing my career to a screeching halt.

Here's why I rant about my life. Here's why I am so very grateful. 

Here's why my "show up and shock" current life confuses so many :))

 Community award recognition for my counseling career!

Thank you so very much Bruce
for your nomination, support and heartfelt introduction!

 Thank you Bruce! Really, thank you from my heart!

 Thank you, thank you so very much Dr Dianne, 

for your support, nomination and years of collegial friendship!

LOVE that we both wore our horse scarves!!! :))

Couldn't be me, without them!

 My life!

              My student and fellow awardee, Taylor!

Thank you Susan!! for your continuous support

                                                                 and for "hating my numbers"! :))

**************** 

And the parties continue!

Happy 90 birthday Grandpa Hal!

Long ago, my dad unwrapped my tin of Almond Roca, 

and replacing the pretty gold foils with my dog Sam's poopies.

Payback is sweet!

 Guess what "gems" are in this specialty box of "chocolates" for my dad?!

Yep, caramel and sprinkle covered horse poopies!

Happy 90th birthday Grandpa Hal

*****************  

 And the events continue! 

Honoring Dr Dianne at her Zonta Recognition, and selfie moment with Dr Jeff 

 Such an amazing, visionary lady! I'm so grateful!

******************

 On a "good day" after the crash! Hello Islands burgers!

*************

 Surprise, Surprise

 I seem to always meet up with friends and colleagues 

at the chemo lab. Cancer can be so invisible...

I am so very thankful for everyone's support and encouragement, and I understand your dismay of my cancer status. I am truly humbled by everyone's "surprise" at "how good I look", and everyone's confusion that a terminal, incurable cancer patient on continuous chemo, with myeloma stats "5 times the HIGH end of normal", can appear so ok. Such a good "actress" I am, right?!

I am so very grateful my treatments "allow" me to function on the days I am functional.
I am so very grateful I am able to do the few things I still do.
I am so very grateful for the "keeping me alive success" of my chemo/steroid treatments, even though I am far far from well. I just hope I can stay on Kyprolis "Kool-Aid" for a while more and don't wind up "Refractory" to it, and then have to switch again to another treatment, even though that is inevitable. It's just nice to be able to "predict" my "unpredictable" side effects.
Go Khemo "Kool-aid"! May my veins successfully drink you up forever!

Ok, this post wound up way too long, LOL, but don't I always say that :))
Ps- did I mention my colleagues started a student Scholarship in my name. Whew! I am just so joyfully overwhelmed and humbled at everyone's support and appreciation!
Thank you, Thank you, my heart is full of gratitude! <3 nbsp="" p="">
Enjoy these interesting articles:

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

http://www.cancertherapyadvisor.com/multiple-myeloma/multiple-myeloma-quality-life-more-important-feature-treatment/article/547105/

https://themighty.com/2016/08/what-its-like-wearing-a-surgical-mask-in-public/

http://www.cancertherapyadvisor.com/multiple-myeloma/multiple-myeloma-treatment-regimens/article/218209/

http://www.myelomacrowd.org/myeloma-101-dex/

https://themighty.com/2016/08/what-i-didnt-know-would-happen-when-i-became-chronically-ill/

http://www.myelomacrowd.org/the-fickleness-and-unpredictability-of-multiple-myeloma/


http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/

http://www.myelomacrowd.org/phase-3-studies-show-kyprolis-carfilzomib-extends-progression-free-survival-relapsedrefractory-myeloma/

https://www.facebook.com/ChronicIllnessOnThemighty/

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