Thanks for Stealing My Life Myeloma

Hello 8.26.16
I’m moving like a sloth today, thank you Dex crash, Chemo crash and low blood counts. How about a pictorial update this time!

~ Poof! 35 years as a college counselor… my 35th anniversary recognition celebration recap. So nice to see all my colleagues I rarely get to see anymore.

2017 will be my last… thank you myeloma. Proud I hung in there for 35 years!
Tuesday night’s smaller dinner celebration recognition of long term colleagues
Chancellor Dr Dianne at Friday’s all-staff Opening Day Celebration
She’s such an inspiration, and I admire her so much! 
The “Godfather of Counseling”, Dr Al
My Counseling mentor and friend for life!
Friday’s all-staff Opening Day celebration. Hundreds of colleagues there

Should have worn a mask, but cross your fingers, I’m still ok!

Without Dr Al and Dr Dianne, (and Joan and Bob)

I wouldn’t have ever been Counselor Julie
Love you endlessly and thank you for my COC life!

Hard to believe this chapter in my life book will be coming to a close in 2017. I always thought I would be Counselor Julie forever. Becoming the lil ol lady who’s been there since dinosaurs roamed the college hills. Never did I ever think my career would be edited for me, due to cancer. As I’ve written before, I pushed myself to work during initial treatments, returning back just “months” after my July 2010 stem cell transplant, working while on maintenance chemo, immune compromised, etc, continuing to work after relapse in 2013 to present, while in continuing chemo treatments, so fatigued, so immune compromised, with crazy side effects. What a dedicated goof I am! But I just love helping students realize their dreams and goals, love the mission of our college, and I have so much passion for the educational environment, my students and colleagues. Seriously, it’s not an easy decision to give up half your identity. So very fortunate to have had the wonderful career I’ve had, for 35 years! I still feel half my age (mentally), with so many unfinished, unrealized plans… Hard to process…

~ My Numbers update: 
Not good as I suspected due to the steady upward climb for months now. Conversations with my local oncology team and my SCT team are: “Maybe time for a medication change Julie”… (as sadly Kyprolis may not be my magic elixir anymore I have to acknowledge)…”Time to change to something else soon Julie” they suggest… Ugh, Cccchange… again. I was hoping Kyprolis and I would be friends for a while… Oh well, such is the nature of myeloma, right. No matter how it is medicated and treated, it will always outsmart any chemo fighting it. I’m finally accepting, myeloma is stronger than my ability to keep it consistently controlled. Next in line will most likely be Pomalyst. We’ll see.. the plan though is to stay the course with Dex and Kyprolis for another month or so…

Lol- my arm looks fat and distorted here! Just the camera angle.

I’m IgA Myeloma:

(Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230)

Date                      IgA        IgG         IgM 
8/20/15                1530       258         < 18
9/13/15                1770       268         < 18
10/18/15              1890
      240         < 18
11/18/15              1440
      233         < 18
12/2/15                862
        230         < 18
12/30/15              482
        262         < 18
1/18/16                426
        228         < 18
1/27/16                432
        221         < 18
2/10/16                551
        227         < 18
2/28/16                635
        226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17

5/15/16                808         232         < 17
6/23/16               1140        267         < 17
7/21/16               1180        247         < 17
8/17/16               1540       238         < 17
                Yep! Up it went…

Normal = 0 … Zero

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That’s a BIG upward Trend in just one month!
June = 1.06
July =  1.01 
Aug =  1.58 
Up again… back to where I was in Oct 2015

Awesome Nurse Josie!
My veins are tired. 2 sticks on Mon and Tues :(

I remember arm IV’s from my 2010 SCT!

Awesome Nurse Tracy

~ Did I ever tell you about my “cover girl” status for a myeloma magazine? 
Have you seen me in your oncology hematology office yet?

I was interviewed waaaaay back in November 2015 and the magazine is just now being published! Unfortunately, things have changed quite a bit for me since the interview, and I am not doing as well now, as I was then. My hair was still full from Revlimid and Dex, and now it’s thinner and short. Kyprolis and I were best friends (see my stats above for Dec – Mar), and I was so hopeful myeloma would be controlled for loooooong time. I laugh at the front cover quote: “I feel more alive than ever”… as that was in reference to when I am on steroids LOL!, or my excitement that Kyprolis was working so well…  

My interviewer Debbie was super positive, caring and a really sweet person. She wrote the article from a positive, all is great and well in myelomaville perspective. I appreciate all the effort that went into interviewing me, the photographer Dana’s personalized photo session, and all the effort the editors and publisher have done to make this a great magazine for myeloma patients. I still haven’t seen the physical copy, but you can read online here at Guide2MultipleMyeloma and Patient Stories and HealthMonitor.  It loads really really slow, so be patient (lol no pun intended!). I have to let them know something’s up with their website. 

~ And I have a psychological/philosophical question for you… But I’ll do that next blog, as this post long enough!! I asked my Doctor a difficult (timeline) question, and received an answer I didn’t quite expect…

Crazy how fatiguing myeloma is! I push myself so much, but my helium tank is empty

Thanks for checking in and reading and caring about my myeloma journey. Let me know you’ve stopped by, tell me your story, and where you’re from!

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