Up Up and Away

Yikes… my medication “cheating” from last month caught up with me.

I just keep thinking that my myeloma numbers will magically change for the better and my medications will suddenly kick in and totally eliminate myeloma’s power over me. Seriously, this must all be a bad dream (make that a nightmare)! As much as I have always (tried to be) a total realist, I shake my head in disbelief that my “perceived” reality is not real reality.

What am I trying to say here… I (stupidly) thought that taking only 1/2 my weekly dose of Dexamethasone and even missing, (smugly deciding not to take), several doses of Dex in May, wouldn’t be a big deal at all. I stupidly thought, eehh, I’ll be just fine, it won’t make a difference, I’m Julie and I’m not supposed to have cancer, so whatever, it won’t matter if I don’t follow what I’m supposed to do. And besides…. I’M JUST SO DARN SICK OF FEELING SICK, SO TIRED OF BEING TIRED, AND SO OVER HAVING CANCER, (hhmmm… haven’t I written that multiple times before!), that I just don’t want to take these GI crazy making meds, so take that myeloma, I won’t take my meds! DUMB!!!

Here I am, living in my fantasyland of unicorns and magical thinking

So I’ll confess… I’m still in denial about having incurable cancer. It must be a mistake. Even though feeling yucky most of the time is my constant reminder, I still can’t believe I have cancer and I have to take all these crazy chemo meds forever and ever and ever until lights out. I still think, oh it really won’t matter if I cheat on my med schedule occasionally, because it will just magically be ok, because I really don’t have cancer. And honestly, I still can’t believe 5 years of treatments, including a stem cell transplant, hasn’t “fixed me up”, and made me “normal” again. I know… dream world…

This probably makes no sense at all, because it really doesn’t make any sense at all, because me having cancer makes no sense at all…

So anyway…. this is what happened:

I was supposed to see my COH/SCT/transplant, hematologist oncologist this past Monday, but because I had so much frikn GI lava, I didn’t dare get on the freeway to go downtown. Even a dose or 2 of my friend Imodium wasn’t calming the raging lava. So I emailed my Dr (and kinda confessed about my cheating) and asked him to let me know the results of my recent labs. Ha! be careful what you ask for, right?!
The results actually shocked me. And good they did, cuz that was just the wake up call I needed.

M-protein up from .88 to 1.13
IgA up from 1320 to 1570
WBCs still in the middle 2’s

So I’m an idiot. I got my slap around, wake up call. I have cancer. I have to take all these meds. My situation is only getting worse. I’ll probably have to add to my chemo cocktail and that scares me a lot!

And these results are not even reflective of my new test cycle of 2 weeks of 15mg Rev only (no more alternating 10mg), with 2 weeks off. I see my local hematologist/oncologist on the 19th, and I’ll take my labs about 5 days prior… so we’ll see. But ok, I’ve learned. There’s something about Dexamethasone that punches myeloma in the cellular gut. As much as I absolutely hate the crash, I do enjoy the short buzzing serenity Dex gives me for about 24 hrs. Time to focus on that, and just accept my relationship with “Porcelain John”.

So why did I cheat in May? There were a lot of things going on. A lot of events I was supposed to attend. C’mon cancer, you’re gettin in the way of my life! Trying to work, live life, be there for others, enjoy family and friends, and trying participate in activities without having to worry about surprise volcanic eruptions. That’s why I cheated a bit. But you know what… I still felt sick. I still had to starve myself if I left the house. I still had a lot of shocking GI reactions. So I learned. Shut up and take my meds.

Here’s what I did on a few of the days I cheated: 

Celebrated Claudia
at her beautiful memorial service 
Hung out with these Gems
Pretended to be normal at a Battle of the Bands car show

 Played in the dirt a bit
And breathed in my favorite scents
Attended my 30th commencement ceremony
celebrating students, with wonderful colleagues

 And when I couldn’t leave the house,
I watched a lot of TV with my daughter and hubby
between never ending visits with “Porcelain John”

Ugh, such a small fraction of what I used to do stupid cancer…
And I am… 
And I do…
But I just can’t
accept that I have cancer

Why June 10, 2015?  5+5=10 :)
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!