Caution… Not a Happy Post… Thank You Life Stealing Myeloma

4.14.18

My throat has been on fire for days. My head hurts. My skin hurts. My eyes burn and mist. My back is still seized from the PET CT Scan. My nose has gross congestion. I’ve gone through uncountable big boxes of kleenex. My face hurts from all of this. I know the evil cough is coming… I’m miserable physically and mentally. I feel so fragile…

It’s a BEAUTIFUL warm, clear Spring day outside… blue sky, new green leaves on the trees, roses wanting to bloom, flies and bees beginning to buzz, happy doggies wanting to play, hens clucking they’ve laid an egg, my horses content just eating hay, not a care in the world…  I am so very grateful for ALL the good things in my life we’ve worked so hard for, and for all the other “advantages” I have in my life… But… always a But… I am so frustrated, so sad, so angry, so on the verge of weepy, for how Myeloma has completely stolen my life. Stolen my body, stolen my independence, stolen my spontaneity, stolen my options, stolen my immune system…, stolen my life as I once knew it.

What you wonder… has happened to the funny, optimistic, fighting Julie spirit?

What happened was I tried to live life, tried to have fun, tried to take a risk being just a bit normal, and I got completely sabotaged. Completely ambushed and laughed at by those cruel Myeloma cells circulating 24 7 within me, saying, “oh No you don’t Julie”, “hahahahha, we own you!” “Who do you think you are going out to a cootie contaminated public place to celebrate your daughter’s 30th birthday”. Ha Ha Ha! myeloma laughs at me… “Oh no you don’t, Ms Immune Compromised, Neutropenic Cancer Patient, you’re not “allowed” to get a PET Scan on Thursday, a birthday pedicure with my Birthday daughter on Friday, then go to a crowded, germ infested country line dance club Saturday night, then go to Sunday brunch the next day!” Hahahhaaaa, myeloma laughs at me. “Oh No you don’t Cancer Patient Julie!” Nope, nope, nope, Julie”, Myeloma snickers at me, “You’re not NORMAL, and you will NEVER be again!, Myeloma laughs. Ha Ha Ha you incurable cancer patient Julie, with WBCs at 2.0 and ANC at .81, on Zarxio Neupogen shots!” What The Heck Were YOU Thinking!!! Ha Ha Ha Julie, you really thought you could step out and have a bit of fun AND NOT GET SICK!”… hahahahahahahhaaaaa, Myeloma laughs at me, jabs me, tweeks my back, sends daggers thru my nasal cavity, lights my throat on fire for days, and completely depletes me, stealing my soul, my optimism, my hope, my thoughts that maybe, just maybe, 2018 might be a year for a bit fun… Nope! No break from my ravages!”, Myeloma laughs…

I just want to cry. Frustration tears. Disbelief tears. Sad tears. I constantly shake my head in disbelief. HOW DID THIS HAPPEN. WHY DID THIS HAPPEN. WHY ME. HOW COME. I remind Myeloma I gave my life to my family, to rescuing animals and humans. Giving my life to helping students become their best, finding their dreams, realizing their goals. I gave, and gave, and gave, thinking that when I retired, I’d be free to do all the things I wanted to do. I never had huge retirement goals. I’ve never had “materialistic” goals. I just wanted to own my own life. Eat when I want. Laugh and play with family and friends. Play outside, drink in all the beauty Nature has to offer us. Take care of my animals and those in Shelters. I always told my kids when “the time came”, I would retire, and love nothing more than becoming their kid’s Ranch Gramma-Nanny, while they were at work… Nope…

Thank you Myeloma for stealing my life, our dreams, plans, goals, freedom, health, spontaneity. Thank you Myeloma for putting a painful pin in my life’s balloons of optimism. Thank you Myeloma for taming me with this awful sinus infection, seized back, giving me a reality check, that NO, I cannot function as a “normal” human being… ever again. Oh but I’ve tried so many times since diagnosis 8 years ago, and most of the time, you Myeloma, completely sabotage me, and let me know whatever I thought my “second half of life” would be, is not, cannot be, and is gone… forever…

My life now is being sick, avoiding sickness. Battling invasive bugs, battling mutating cancer cells.They’re all out to bring me down.

Yes, I’ll get beyond this awful bug currently humbling me. I’ll buck-up, shut-up and be me again soon… Each day I’m a bit better since the cooties invaded late Tues, revving up Wed and then fully attacking with a fever of 101.9 when I woke up Thursday morning. I felt awful physically and mentally. I gave in, I accepted my status. Don’t have a choice. I laughed-cried at myself every feverish, sore throat, head pounding, nose clogged moment. I just laugh incredulously at my daily Myeloma battle, and my crazy-thinking that I “could be normal” here and there. My entire purpose in life is just staying ahead of  Myeloma, one pill at a time, one infusion at a time, one injection at a time, one type of pain at a time.  And yes, as Myeloma patients go, my complaining is ridiculous in many ways, and my heart breaks for all those out there with serious myeloma immobilizing issues.

But for now, I’ll whine, weep, be sad and angry… as I mourn my past health, and the journey ahead of me…

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