Life in MyelomaVille… Decisions Decisions


Hellooooo Everyone :)
It’s a Chemo Dex Day, so here I am up late posting and should be “forcing” myself to sleep. Off to bed I go, see you in the morning!

Oh, Dexamethasone how I love you Now, but how I will hate you Later! You pump me up, prop me up and fake-energize me. You temporarily let me feel “like me” again for 2 days. But how I hate you when you crash me later. As much as I read and ask, I still do not understand the bio-chemical-physio of  HOW steroids work on the body. One thing for sure, my body does react well to Dex steroids and my type of myeloma runs scared from Dex.

It’s clear now.

If I take a break, my numbers go up. If I stay the course, I maintain livable levels. My labs this month revealed this. This sounds like “Duh Julie”, but it really brings home my reality. Myeloma is incurable, it quickly comes roaring back, and as much as I would like to believe I will be ok, I am reminded monthly, I AM NOT! Sorry I mention over and over that I cannot believe I have myeloma. Yes, “Numbers Don’t Lie”, so slowly I am accepting I have incurable cancer and myeloma owns me. Writing it out here helps me. Telling you here helps me process my reality. Thank you, my invisible friends.

There’s much discussion in “MyelomaVille” regarding aggressive treatments with the goal of “Remission” vs viewing myeloma as a “Chronic Illness” and continually treating it. 6+ years into this, having had “aggressive” treatments at onset and diagnosis, resulting in remission after my Stem Cell Transplant, which was only maintained with (almost) continuous myeloma meds, I am now on the “This is Forever and Chronic” bus. The race to “cure” and “remission” with intense, aggressive, body organ compromising treatments is overrated in my mind. I know I will ALWAYS need to be in treatment to keep myeloma from killing me, but I am ok with this. I know of too many, that were either too aggressive or too complacent. Tortoise treatment pace is ok with me, if I have some semblance of quality and happiness each day.

Aren’t you just so “pretty” myeloma

Earlier this month, I had completed week #1 of Kyprolis + Dex, then had my weird scary heart issue (see my previous post for details). As a result, I skipped treatment week #2 as my oncologist and pharmacist did not want me doing my regular infusions, until the heart issue was further looked into and results from the heart tests were read. I’ve since found out I have a condition called PVC – (Premature Ventricular Contractions) with “normal irregularities”. Not a huge concern, but we’re watching and being aware..

But as a result of this little scary episode, I only did 4 Kyprolis infusions vs the normal 6 per cycle in a month. Yep, myeloma took advantage of that, and UP went my IgA. Yep, an eye opener for me, as I always think, “Oh, skipping treatments won’t make a difference”…  well ha!! Skipping the one week, and then cancelling (my choice) the “make up” week, sure gave myeloma the upper hand again, but gave me the reality check I always need. I am so stubborn and such a hard-learner about this. If I could only get rid of my “magical thinking”, and fully accept I am a cancer patient for life… Crazy how missing 2 treatments had such an impact.

So back I go, like a good chemo patient. Beginning cycle #7 yesterday. Monday Tuesday. Monday Tuesday. Monday Tuesday into May. Kyprolis and Dex you are my best friend and worst enemy, but you keep me alive. I embrace the Good days, and accept the Bad days. The chemo lab is my “new office”.

Hi-Ho, Hi-Ho, off to chemo I go.

Now if I can only master the art of taking a good selfie
without the double and triple chin effect lol

Panda says: Chemo in, Side effects out! lol
I cut a banana the other day, and the pieces fell into a smile!
My version of a “banana split!”

Here’s my stats for perspective:
Immunoglobulins explanation 
(I’m IgA myeloma) 
Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230

Date                      IgA        IgG         IgM

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

Normal = 0 

July = 1.26
Aug = 1.01
Sep = 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
March = “Abnormal”, but no M-Protein number mentioned
April =  Abnormal,  but M Protein value not detectable

  Be sure to check out Dr Durie’s awesome informative videos here.

It’s Spring for sure, when Mr Tortoise comes out of hibernation.
Aren’t animal relationships so amazing!

We think he’s enjoying all the wild weeds we’ve let grow for him

Our roses are so amazing this year!

I am so grateful to still be here
and live the beauty of another day!

Today in the chemo lab I met a lovely patient who has just been diagnosed with end stage cancer. She commented that “her doctor gave her 4 months”. She was quite upset with this prognosis and felt she should have been given “more hope and more options”. I told her my cancer is “terminal” and incurable. I told her I’ve known this since diagnosis. I’ve known my precarious status for 6+ years now. Sometimes it’s better knowing “the truth” and knowing the “medical prognosis”. I told her I knew my status from “Day One” and that helped me be strong and make the choices I did. She mentioned she’s considering not continuing with harsh traditional chemo anymore and trying “holistic naturopathic options”. I mentioned I have had great success with “traditional chemo and traditional treatments”. I let her know I’ve been battling 6+ years with up and down success, but I’m still here and so grateful. One treatment at a time. One day at time, one month at time. Keep coming back. Don’t give up. There are so many options now. I commented that “Less IS More” and it does come down to “Quality of Life”… Too many are fixated on Cure and Remission. I gave her encouragement to “stay the course”, follow her oncologists’ recommendations, read a lot online about her type of cancer, be informed, know your options, go to support groups, consult with trusted others, don’t lose hope. Every day matters. She said I “inspire her” with my effervescence and sunny personality. I thanked her, and said I hope to see her next week at our weekly infusions. She hopes so too. 
As I walked out I reflected on my “terminal” status. I reflected on how lucky I am that treatments have “worked” for me. Yes I’ve been through 5 chemos, countless types of treatments and countless other supportive medications, but I am still here. I thought about what I would do if I KNEW I only had a few months…
What would I “do” if I REALLY Knew My Time Was Up?…

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