Hello to my last post on the 6’s. Wow! Can you believe it?! Just hit me as I typed 12.26.16! My “last” 6’s post. I made it through year 6 of Myeloma and my 7 year diagnosis anniversary is just around the corner. It really hit me.. this will be the last post on my 6’s theme (unless I make to 2026 lol!).
Numbers have become such a BIG deal to me since my diagnosis. For 6 years, they’ve determined and controlled my life. For 6 years, monthly, weekly numbers have told my internal tale of treatment success, or not. Numbers have become my enemy and my friend. Year 6 flew by, with early treatment success with Kyprolis, then suddenly, myeloma said, Oh heck No!, and I had to say goodbye to Kyprolis and hello to Pomalyst last month. C’mon Pom! Let’s kick myeloma’s butt for 2017!
November and December 2016 have been really challenging for me mentally and physically. I was always such a “well, healthy” person, and it’s really really really difficult for me to be a sickie. I just hate feeling so depleted, so exhausted, so fatigued, so yucky, so sickly. I want to run, play, ride, laugh, engage, create, give, contribute, go, do, play, ride, ride, ride… but my reality is, I can’t. Literally I cannot. My body doesn’t let me. My blood levels are either so diminished and depleted, that fatigue disables me, or I am sick. Sick from myeloma’s head to toe invasion, or sick with a bad headcold, or sick with pinched nerves from coughing from the bad headcold. Sick from another illness, and another one. Or “sick” on my Dex steroid “crash” days. I’m sick more than I am well. This is not me! I should be full of energy, plans, engaged in life and people and ideas. Engaged in doing, going, playing, contributing, laughing, living, seeing, giving. Whaaaaaat happened to Julie the “energizer bunny”. Sadly myeloma ran my batteries out.
In the beginning, I really “convinced” myself that I would be “different”. I would do some chemo, do the stem cell transplant, do some maintenance chemo, and onward life would go to infinity, and myeloma would leave me alone for a looooooooooong time, and I would have my life back. Well, that did happen, to some degree. I did have early treatment success in 2010, 2011, 2012. I was able to function as a pretty good fraction of myself (or at least pretend to, lol), then 2013 brought myeloma roaring back when we tried taking a break from (Revlimid) maintenance chemo.
So for 3 years now, 2013-2016, I have been back in active treatment, Non Stop. I’m exhausted mentally and physically. I’m worn out from the ups and downs. I’m worn out from the “what if’s”, the wondering when each treatment will stop being effective, the exhaustion from all the physical side effects, and the mental toll it takes living with incurable cancer.
I’ve always been an analytical, “Why” person, and I can’t stop asking myself “Why Me”? “How come”? “What caused this”? I can’t stand the “not knowing” how myeloma happened, taking over my entire being. I am teased by a couple “good days” per week while on Dex steroids, then tormented for days with lethargy, GI unrest, unbelievable physical fatigue, headaches, neuropathy, random aches and pains, blurry vision, and overall physical dysfunction. Yes, I FORCE myself to be a semblance of myself, as I HAVE to. I have too many depending on me. I am the “rock” of my family psychologically, as that’s just who I am. There are animal chores that HAVE to be done. Yes there are many days I can barely function, but still function minimally to get it done. And yes, there are more and more days now where Jim and I need help, and our kids and others are needing to help us more regularly then ever… On beautiful sunny days, those days after it rains and the earth is refreshed and cleansed, and the sun shines warm and nourishing… those are the days I am most sad and overwhelmed about my circumstances…
So I planned my weekly 40mg Dex steroid dose to coordinate with Christmas and New Year’s. I’ve fully learned the amazing perk and pump up Dex gives me, and I take full advantage of it now. I’ve learned how to make Dex my “friend” before Dex becomes my nemesis. So I took Dex on Dec 23rd and 24th, knowing I would get the lovely “kick” through the 25th. Sure enough that worked, but late Christmas night, after doing way too much, and trying to be way too normal, I bit the dust. And I bit the dust all of the 26th, and thought I was getting a headcold again. I’m finishing this post on the 27th, as I finally feel a bit better now. But so fatigued. So incredibly fatigued and depleted. If you’ve never experienced low WBC’s and low RBC’s, it’s difficult to put into words the physical exhaustion and depletion one feels. I could just fold up and be a slow motion blob all the time, but I can’t let myself…
I pulled myself together late last week, had a few good days before and during Christmas and managed to have some family fun. Our kids “kidnapped” us on Thursday, for our annual holiday tradition at our local nursery. We’ve been doing this since the kids were babies, and it meant a lot to me, that I was able to go at the last minute. It meant a lot to have a few moments of pseudo normalcy, reminiscent of the past.
Hoping all of you had a wonderful Christmas and Hanukkah with your families and friends! I hope you were able to celebrate your lives, your blessings, and all that makes you happy and fulfilled.
I’ll be back on 12.30.16, reflecting on my 7 year diagnosis anniversary!!!
Thank you for reading and following my myeloma story.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!