Short and Sweet.. Learned my Dex Lesson!

Hello 10.26.16

Blah Blah, my head spins crazily. Forward march to infinity! What happened to my life?! When I reread my blogs, I can tell which were written on Roids and which were not lol. Can you? :)) Hoping you enjoy my posts, rants, musings, honest thoughts, and philosophizing about my life turned upside down by cancer. I’m sure glad I began this blog in 2010, recording 6+ years of my life, battling myeloma. Fascinating for me to go back and read my life as I felt in those posted moments. Everyone says, “Julie, write a book!”. My reply: “I have… read my Living book, my blog!” This IS my Life!

Hmm, should I write a book?? Let’s talk, Amazon ;)

One of my greatest challenges is planning my chemo/steroid treatments around my life. Or should I say, planning my life around my treatments.Treatment and side effects REALLY do change one’s life on every level!

I’m very challenged, but I must say, that in meeting everyone I do in the chemo lab, I sure gain a deeper perspective of the huge range of all cancers out there, not to mention, connecting with my myeloma peers, and hearing the huge variance of treatment types and side effects everyone deals with. As much as I whine and complain about my situation, there’s always so many struggling with much “worse” scenarios. As frustrated and pissed off I am at my circumstances, I shut my trap when I see those powering through much more intense treatments than me. I witnessed a lot of “sick” and challenged cancer comrades in the lab this past Mon and Tues. I really feel for those newly diagnosed, those on multiple chemo cocktails, or those who’s bodies are seriously betraying them. Basically I can handle most “anything” but the “upper GI” drama, just sends me over the edge…

So this week became particularly challenging for me regarding the timing of my treatment schedule. Why, you ask? Well… this week is a “big deal” socially and professionally for me, as my dad’s 90th birthday was Tuesday Oct 25,
and on Thursday Oct 27, I will be receiving a rather “prestigious” community
recognition for my contribution to Education as a college counselor. For the “well person”, no big deal. Do your regular daily life, attend a function in the evening… no sweat, right? But for a challenged sickie like me, I can barely do one thing a day, let alone do chemo/steroid treatments and then wonder how I will feel, and when the evil side effects will hit!
In the past, I have skipped chemo treatments and steroids when I have “important” social, professional, personal events. But in light of my increasing M Protein and IgA numbers, I opted for being “smart” and not skipping this week’s treatments. With Kyprolis and Dex steroids typically on Mondays and Tuesdays, I can normally expect to wane by mid day Wednesday, and then it’s all down hill from there into mid Saturday. (See my 10.16.16 DETAILED Dex rant post!)

So what to do about Treatment!! I wrestled with options for a few weeks: 
1- Skip both Kyprolis and Dex entirely this week
2- Just do my regular 2 days of Kyprolis without Dex
3- Do just one day of Kyprolis and Dex
4- Bite it, and do my regular treatment and risk being dysfunctional on Thurs night!

Well, which option do you think I decided?
I picked option #2, and what do think happened?
Yep, the plan kinda backfired to my great surprise! I truly thought I’d be ok with just Kyprolis, NO Dex. See, my Dr and I had experimented with that option earlier in the year, when Kyprolis was pummeling myeloma. I remember feeling ok, but that was short lived, as myeloma, said “Oh yea.. Ha! just watch me now”, and back up went my IgA and M Protein, and back I went on Dex. But if you’ve been following my blog for a while, or you know me personally, you know I tend to think too positively, and I underestimate the power of cancer and treatment chemicals, and I just muse, “I’m Julie, and everything will be “different” for me”… Ha!

So Monday comes and off I go to the chemo lab without pre-medicating with Dex. Thought I’d be just fine, but I did have my radar on, watching if I would be sabotaged. Infusion went fine, the rest of the day ok, but I wasn’t very hungry and of course minimal energy, and I began to feel a bit “off” as the day marched into evening. But I carried forth, trying to be “normal”, ignoring my status of a cancer patient on chemo. I ate lighter though, had some of our own chickie’s eggs and spinach for dinner, tried to keep hydrated with my fave potion of pure cranberry juice mixed with sparkling water, herb tea, plain water, etc. BUT DURING THE NIGHT… OH BOY…

Hello Kyprolis, no steroids!

I had a horribly restless sleep, achy all over, felt strangely feverish, sweats in weird ways I hadn’t had before, felt nauseated, awful headache, and overall feverish yucky awful, with that impending doom of OhNoI’mGettingSick!! I seriously thought I was getting a bug with a fever, or was going to get standard chemo sick. But I made it through the night, woke up feeling gross and realized my body was telling me how much I should looooove Dex steroids and never ever ever think about missing them again with chemo treatments. So yep, down the hatch I dosed not long after getting up. But I took 1/3 of the 40mg dose as I knew my “Recognition Event” was 3 days away, on my typical Thursday-crash day, and I’d certainly be skrewed if I took the full dose of 40mg on Tuesday. So I decided to take 12mg Tues, 12mg Wed and then Roid-up with the final dose of 16mg Thursday, Event Day, hoping hoping hoping to feel ok throughout Thursday evening. So this will be very interesting to see how it all works out. Haven’t done 3 days in a row of steroids since 2010. And YES, I discussed this with my amazing chemo lab pharmacy Drs, and they gave me the ok, go ahead. I’m not that much of a rebel (wink, wink).

And so far, I feel ok. Not overly Roided. Just the usual fake energy pump up, and tired from little quality sleep. Very interesting experiment. So what have I learned: AS MUCH AS I LOVE TO HATE DEX STEROIDS… THEY ARE MY BEST FRIEND for treatment days and pounding myeloma cells. I didn’t have a fever when I went to the chemo lab yesterday, and the achy ill feeling has subsided, thank goodness! Oh yes Dexamethasone, you are my best friend, worst enemy! You pummel myeloma and give me a false sense of ok. Then I get to HATE you on crash days. But I’ve learned a valuable lesson: Kyprolis loves you too :)) Trying this 3 day steroid regimen reminds me again of how I withstood 40mg, 4 days a week, back for initial treatments in 2010! I suddenly did the math on that… and wow, I took 160mg of Dexamethasone steroids per week, for about 5 months! Did I do my math correctly? 40+40+40+40 = 160 right? Wow! 160mg of roids a week! Go me!! I was so mentally gone back then and trying so hard, too hard, to be “normal”. I just tried to ignore all my awful symptoms. But they were there!! OMG, they were there. And I was gifted the classic steroid bloated MOON-face too. Ugh… here’s a pic from late May 2010:

Look at that MOON Face! This was just before prep for my July 2010 SCT

Confirming how I can eventually bounce back from this “bipolar life” with steroids and chemo, is my ability to “fake force” my recuperation after the lovely killer crash. Last week I felt awful late Wed, Thurs, Fri and into Sat morning… but I HAD to pull it together, as I had previously signed us humans and doggies up for the ACS cancer walk- Bark for Life- the doggie version of  the ACS Relay for Life. I named our team “Mutts for Myeloma”! I signed up, not knowing if I would make it or not, like I always do now. Sign up. Cancel. Sign up. Go. Plan. Cancel. Plan. Go. Cancel. I never know…

So here’s a sample of the FUN we had. “I was ok” for the event. Tired, dehydrated, exhausted just from getting the doggies there and hanging out, but ok. So amazing how much I used to do, and now I can barely do one thing a day on “good days”. As always, I can’t eat or drink before events, as I never can predict my unpredictable GI system. I crashed on Sunday from all the activity, and had new rib and abdominal soreness from the big doggies pulling on their leashes, but worth it. I guess steroids do deteriorate muscles as they say, and I sure to have full body deterioration in so many ways! But I won’t let Myeloma and cancer treatments steal my life any more than it already has. I push push push myself, pay for it later, but glad I do the minimal things I do… before I can’t…

So next up is seeing how Dex steroids affect me later this week, after my 3 day split of 40mg. Hey, if it works out ok, I may ask my Drs and Pharmacists if I can do this regimen more often. If I feel ok tomorrow, day 3 of steroids, that would be exciting to have 3 “good days” per week, right?! Next week it’s back to “regular” treatment on Mon and Tues, “pregaming” with Dex BEFORE Kyprolis! Learned that lesson well.. or maybe just a fluke?? Hoping Kyprolis and Dex continue to team up for me, and I don’t become “refractory”. It’s nice to be able to stay on a “regular” successful treatment regimen for a while. Nice to be able to “predict” side effects, infusion schedules, medication schedules, etc. C’mon Kyprolis and Dex, get in there and pummel those tricky myeloma cells! Hoping for more “treats” than “tricks” for a long time! Happy Halloween and Fall everyone!

 Every time another holiday comes around, I am so grateful to still be here!
When I packed my decorations away in 2015, I wondered if I would be
unpacking them and decorating for 2016.
I did, so happy to do so! Hope to write the same for 2017
Happy Halloween to all that celebrate. 
Enjoy everything spicy and sweet, toasty and cozy and fun with your family!


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