Myeloma! The Gift that Keeps on Giving

Hello 12.16.16

I almost wasn’t going to post again, as I am so tired of myeloma in my life. So tired of myeloma consuming so much of me and my life, taking over my thoughts, my life, my physical and psychological being 24/7.  But I know I left you hanging regarding my next treatment options, so here’s the quick update below. (All my current blood work stats are on my previous 12.14.16 post, if you want those surprising details.) Thanks for checking back and caring as you do!

First off, thankfully I am finally better from my lousy cold, that caused my awful incapacitating back, shoulder pain. So intense. So torturous, but easing off a bit each day. Today begins my off of Dex steroids- crash, so we’ll see how bad things get without the steroids propping me up and helping with the horrible inflammation. My Dr did give me a Rx for a muscle relaxant, to use as needed.. so we’ll see how this goes… ugh! Been a really challenging last few weeks, month.

Honestly, so much is a blur to me, as so much has happened in terms of me facing new (and old) realities, but essentially, my Dr suggested I move to Pomalyst 4mg (the highest dose). I (of course) then suggested moving a bit more slowly, so as to avoid the rash reaction again, suggesting we blend, alternate Pom 3mg with 4mg, like I did back in 2015 with Revlimid 10mg and 15mg. I’ve just felt so yucky and challenged, and I’m just so very tired of never feeling well, I just didn’t want to jump to 4mg immediately. We agreed on this plan with a wink and a smile. I didn’t feel Pom 3mg was given a full chance, considering all the things going on at once with me, this past month. So one more month of 3mg, but now, alternating with 4mg, and then see what story my blood tells in January.

I’ll start this new regimen on Monday Dec 19 for 3 weeks, paired with the Dex 40mg per week. I’ve found Dex to be a bit more “friendly” when I don’t superpower myself with the entire dose at one swallow. Plus I’ve needed to space it out recently to help with the horrible back issue, and now with Christmas and New Years coming up, I need to “properly time” my bipolar Up and Down, so I can enjoy the holidays a bit. OMG, this is all sooooooooo ridiculous. I cannot believe what I am writing and planning. It’s all still so surreal, even after almost 7 years of continuous treatments.

Speaking of 7 years. 7 years ago this time, I was being seen weekly in my new shocking, unfamiliar, I can’t believe I am here, office of Hematology Oncology. I just looked at my lab history and saw that on this day in 2009, they drew a lot of blood for a lot of tests (all the myeloma marker tests I know all too well now), and saw something about “draw and hold for Transfusion” … So much was going on then, and I sure didn’t understand the seriousness or the implications of what was being tested. Reality did hit, and hit hard on 12.18.2009 when I had my first and very painful, Bone Marrow Biopsy. I remember Dr Lee and Nurse Jalee being so kind and caring about the procedure, but it was SO INCREDIBLY PAINFUL, and that physical pain, slammed the psychological reality home, that “I was one sick lil puppy”… the comment I tearfully made, as I turned to the wall, while lying on the procedure bed, and began sobbing my eyes out, realizing my new reality. I knew at that moment, and that’s when I fully absorbed, something big and bad was going on with me…

So anyway, so much to reflect on, so much to process, so much happening in my life, yet so little energy for anything at all. I’m sad that I wound up so sick these first few weeks of December, and the holidays are almost here, and I just don’t have the helium to do much about it. Oh well, things are what they are. Life is what it is, and there are so many, far far worse off then me.

I wish all of you the very best for whichever holidays you celebrate. I wish you love, inner peace, serenity, happiness, joy, warmth, fun and a life full of that which makes you happy, so you can share joy with others. I wish you positivity and fulfillment, so that you can give back and contribute to this world. I grapple a lot with “Why Bad Things Happen to Good People” and why the world is in such chaos. I just don’t understand all the challenges, heartache and heartbreak, disease and violence, etc, with humanity. Nature just seems so perfect to me, the natural world is just so beautiful and self sustaining. Yet there are just so many human battles going on everywhere on every level for everyone, I just don’t get it. I just want peace and happiness… oh well…

https://www.themmrf.org/multiple-myeloma/what-is-multiple-myeloma/ 

https://www.myeloma.org/what-is-multiple-myeloma

http://www.myelomacrowd.org/

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