Numbers Don’t Lie and Other Shocking News!

*Warning* Post Written on Steroids lol!
Ok Ok, I confess. I’m a numbers freak! I just can’t get enough of seeing my blood test stats. It’s such a precise window into how Myeloma is winning or being pummeled! I drive the nursing staff nuts with my requests to print print print, release release release my stats! When I meet with my Doctor, I hover over the computer screen with her, asking, nodding, inquiring, questioning, pointing, comparing. I’ve never been the silent complacent type, and I’m even more obsessively analytical and inquisitive now.

So now that I’m hooking up to Kyprolis 2x a week, for 3 weeks in a row, I get to obsess over my labs weekly! My Doctor has requested I do blood work 24 hours or less before my infusions to confirm if I am doing ok, and strong enough to handle this new Kyprolis regimen. (Initial first dose was lower in Nov, now increased in Dec). With profuse apologies for being so “high maintenance”, I always ask my kind Nurses to print my most recent lab reports.

And good thing I do, as my December results have been down right shocking and mind bending. I keep thinking they’re misprints. They must have my blood mixed up with someone else’s. All this, the polar opposite of what I was hearing and seeing exactly 6 years ago December 2009, when I was seeing horrible, pre-diagnosis, scary you have something really wrong with you type results! Again, the crazy ironies in my life.

I just couldn’t believe my eyes the last time I met with my Doctor. I kept looking at the screen with her, and saying, “Really?! No Way! Am I seeing that correctly? Has my IgA REALLY come DOWN? And my WBC’s! Whaaat??? They haven’t been that high in I can’t remember when!” And all my subsequent tests keep getting a little better each time. There must be a mistake! How can this treatment “fix” me up so FAST? (Ok, maybe it is the horse poop factor ;)

I know, I know, you’re all thinking what a crazy stubborn idiot I was to
not abandon Revlimid sooner, and why didn’t my Doctors push me harder to
switch? But back then, we agreed that it wasn’t quite time to “panic” as my IgA and M Protein was a somewhat “stable” (albeit upward) roller coaster. I do reflect more now on how my oncologists offered, nudged, encouraged me to switch chemos during 2015. Seriously, it was me, being a scardy cat of new yucky side effects. (So far, Kyprolis side effects are quite similar to Revlimid side effects.)

So here’s the fun facts:

My IgA for 2015
Standard range = 70 – 400 mg/dL

  1440 (after 4 Kyprolis infusions)
    862 (after 6 Kyprolis infusions)

 OMGeeeezzzz look at that beautiful December number!!! It’s only 3 digits!

Standard range = 0.00 – 0.00 g/dL

1/26/15     1.25
2/23/15     1.20
3/25/15     0.96
4/20/15     1.14
5/18/15     0.88
6/2/15       1.13
6/16/15     1.42
7/6/15       1.19
7/20/15     1.26
8/20/15     1.01
9/13/15     1.37
10/18/15   1.58
11/18/15   1.12 (after 4 Kyprolis infusions)
12/2/15     “See comment/no comment/no result”
… “Protein of restricted mobility detected in the gamma region. Immunofixation was not performed on this sample because the elctropherogram remains unchanged from the previous report which was….
“IgA Lambda monoclonal gammopathy”. Hey I had forgotten which sorority my myeloma was in ;)
“Quantitation of M Protein may not be accurate due to coelution with beta” (maybe I have Betta fish growing inside me ;)
Saaaay whaaaaat???!!!

And to further shock me-
My WBC’s are now hovering in the 3‘s!!! Whereas I couldn’t get out of the 2’s forever previously. Normal Range = 4 – 7

And to further shock me-
My ANC was previously hovering at 1.0 or below, and I was becoming “Neutropenic” and almost put on regular Neupogen shots!  My ANC is now hovering @ 1.8 Normal Range = 1.8 – 7.7

I loooooooooooooooove you Kyprolis + Dex! You ARE my magic elixir!

 Love these chemo transport bags!
But they are “too contaminated” to keep they say.
I guess us patients ask about them all the time lol.
Note the “J” station I was assigned!

I have plenty more Stats, but you get the point :) Kyprolis + Dex is pummeling Myeloma! Well, let me temper that just a bit: My IgA is still over 2 times the HIGH end of normal, but hey, I’ll take the 3 digit category any day over the creeping up 4 digits just a month ago. Remember just a month ago, I was even SENT AWAY from doing chemo, as I was so immune compromised and NOT strong enough for treatments! (See November 5, 2015 blog post for that crazy story!) 

 LOL Myeloma’s running scared now!

When I saw my improved numbers, I just wanted to SCREAM! (Steroids of course having a HUGE impact on my hyper-excitement.) But I zipped my trap, and kept reviewing and reviewing my paperwork, as I whispered to my IV infusion nurses what was going on, and why I was so electric! I felt so bad with all my good news, as there were some pretty sick patients in the chairs just adjoining me. New patients, scared patients, hairless patients, sick (looking and feeling) people… and here I am, all buzzzzzed up on Dex Roids with rosy cheeks, still with hair, and of course, I always have make up on, so I don’t look like “death warmed over”!

It turns out, as it always does in my life, I met a man in the chemo lab who lives in my area. We’re both in education as he was a high school teacher, and we have tons of local people in common and (of course!) we have the same oncologist. He’s pretty off the wall and even more chatty-jokey than me, so when he overhead my nurses talking about my good news, he said to them, “Hey, can I get what she’s getting! Just move her IV over here to me, and gimme some of that magical serum!” He has AML, not Myeloma, but I bet he’ll ask “our” Doctor if Kyprolis would work for him.

Who ever thought I could be so in love with a chemical!

 After my infusion, the lovely Dex steroids buzzzzz had even more kicked in. I’ve never been a drinker, but I’m guessing what I feel, is what party-ers feel after a few “good” drinks or shots. I just wanted to run and jump and scream my good news throughout the clinic hallways! Jim’s following me out, not able to keep up with my animation and antics! It’s really so crazy how one day I can hardly get out of bed, and the next day on Dex, I feel like my ol hyper crazy fun self. I sure know “bi-poloar”. 

 Dex Buzz!

I stopped by the Oncology Pharmacist’s office to mention my surprising news, and confirm I was seeing my reports accurately. He smiled and said, “I know. I’ve been following your results.” So I asked with run-on sentences, “What does this really mean? Will I be able to reduce the dose, maybe come only once a week, or only twice or once a month now?” He smiled and said, “Well, not so quick Julie. You realize if we change your regimen too soon, or reduce the dose too soon”…. he went on to say… “What we have you on is standard protocol”… “You don’t want to change what is currently working and reducing your levels of Myeloma”… “It will just come back”…

Oh yah, that’s right I acknowledge. What a crazy Dexed-up nut I am. Of course, stupid me! If I stop this magic poison going into me, successfully killing off myeloma, boom! myeloma comes roaring back! Ha, I laugh at myself. Calm down blondie. Reminder to self: I haven’t even been doing this for 2 full months yet. I’m only on month #2, infusion week #2. Next week is infusion #3 week, completing month 2. Ha! My steroid buzz got me a little too animated and unrealistic. We did conclude the conversation, that in the future, when my numbers stabilize (if they do), after following the RECOMMENDED PROTOCOL, if I am doing well, perhaps I can be reduced to a “maintenance” dose! Lest I forget, Myeloma is INCURABLE, and I will be on chemo for LIFE!

Hahahahaa! Me!

So driving home, I’m just repeating OMG over and over. I can’t believe my good fortune and how wonderfully my body is responding. I am just so blessed and so lucky, and this is all so incredible and surreal. I just love you Kyprolis and Dex! You are my magic! I celebrated with gulping bottles of hydrating water, visualizing dead cancer cells flushing out of me. And when I got home, I couldn’t wait to get outside and feel my aliveness, even though it’s been super bitter cold recently. Thank you Dex-energy-fake-high for letting me pretend to be normal and celebrate by feeding my horses, raking their “apples” and just breathing in LIFE!!!

All this so incredibly ironic compared to what I was hearing and experiencing EXACTLY 6 years ago to the month. 2009 Death sentence vs 2015 extended Life hope. I have waaaaaay too much life left in me. Way too many things still to accomplish. Way too many people and creatures to impact. And way too many Bucket List items left to accomplish!

Thank you Amber (Wild Horse Diaries) for this awesome picture! 
Another beautiful sunset as I was walking out from my best lab tests ever!
And I almost forgot to mention, today I had an EKG/ECG in Cardiology, then a full Skeletal/Bone Scan prior to my Kyprolis infusion. I’m also scheduled for my 6th, yes SIXTH for 2016, Bone Marrow Biopsy right after New Years, on January 4, 2016.
Thankfully I was loaded up for 2 days on 10mg Dex to get me through all this exhilarating news, tests and tests and infusions. Tomorrow, and for 2-3 days, I crash. And do I crash, ugh… My wake up call reminder of how sick I still really am. But today, I’m a Happy Camper!
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!