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!
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| Hmm, should I write a book?? Let's talk, Amazon ;) |
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...
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| Hello Kyprolis, no steroids! |
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:
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| Look at that MOON Face! This was just before prep for my July 2010 SCT |
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...
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
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!
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