I'm so beat up. The 40mg Dex Steroids, 4days on, are really taking their toll on me. They're great the first few days, then with all the sleepless nights, then the totally yucky crash for a few days, I'm rethinking my insistance on doing this. And I also can't stand how bloated I feel and how puffy I look. And I just can't stand all the Fatigue. I feel so limited and disabled. I'll take my Myeloma status labs middle of the week, and we'll see what's really going on with Myeloma trying to win. Perhaps I will downsize to 20mg per day? Ugh I am just so over all this. I hate you Myeloma and what you have done to my life...
It's a beautiful day out today, and I just can't drag my sorry self out there... but I will, because I have to, because it's just so beautiful out. As I write this, I look out our big kitchen window and see my horses soaking up the December sun, swishing their tails at the few remaining flies of 2020, Jim's roses and flowers still bloom brightly, the doggies run around chasing flying things and each other, and the breeze blowing thru the oak trees and our patio, wakes up Jim's collection melodic wind chimes. I just have so much to be grateful for, but honestly, I'm so weak and tired, I have residual pain points that remind all the time of my situation, and my helium, my get up and go, is just stolen. I'm grateful, but so sad.
During my awake hours I try to get things done. I feel like I have a huge boat anchor ball and chain attached to every part of me. The Fatigue is just disabling. I have a headache today. Hope that doesn't mean something. Perhaps I'm a bit dehydrated, as I'm so very tired of hydrating. Nothing really tastes good, and I find myself snacking more than I used to, just to get the metallic taste out of my mouth. Doesn't do much good tho. Some days I eat "well", some days I just don't "care". My Not eating well would be most people's "good" days, as I'm not a junk food eater, but I certainly don't get every nutrient on the food pyrimid everyday. I care, don't care, anymore. I often wonder if I am feeding, nourishing, powering my immune system, or if I'm actually empowering the myeloma cells trying to kill me. When I eat well, take the vitimins I do (B12, D3, Multi, etc), I wonder if the myeloma cells are laughing and gobbling it all up and gaining strength against me. It's just so weird to live with your body sabotaging you, and trying to kill you, every second of every day, 24 7.
Honestly I just can't wrap my head around all that has happened to me. In many ways, I so carefully planned my life, was super cautious with most everything I did, I didn't take a lot of "risks", and then I am rewarded with terminal, incurable cancer. Where the F did Myeloma come from? How did it find me? I'm always asking WHY, How Come, Why Me, Why the Torture, What Did I Do To Deserve This? I just want Peace, Serenity, Calm, Happiness, No Challenges any more, No Pain. I want to Laugh and have Fun. I want to have Energy to help myself and others. I was a helper all my life. I gave and gave and gave. I did little specifically for me. Why Life, Why, Did This Happen To Me... I know,... I'll probably Never Know the Why...
So I carry on. One labored step at a time. Sad, Angry, yet Grateful. Shocked and Amazed. Always wondering, always shaking my head that This Can't Be. This Cannot Be My Life. 11 years Fighting is a long time. 11 years taking super strong chemo meds is a long time. 11 years in continual treatment is a long time. 11 years processing having cancer and being sick, is a long time. 11 years being sick. Grateful for 11 years, But it's become so Awful, yet I am very Fortunate in so many ways.
Well look at these lovely test results that just came in. From the time I started this post, I did go outside as my kids and their significant others came over to help with chores. Was super nice to be outside, and feel a bit of normalcy with them. When they left, I did too, and went to take my Monday pre-chemo status labs... I probably should not be driving as I am so weak and dizzy, but I am very careful. They always offer to drive me, but the Independent spirit in me, insists I'm ok...
So whatcha think my Dr will decide re doing Kyprolis and continuing Dex, after seeing these wonderful levels:
NEUTROPHILS, ABSOLUTE COUNT (ANC)
Me = 0.85 x1000/mcL (1.80 - 7.70 x1000/mcL (normal range)
Ok, I'm done for today. So sad, so disheartened. I feel I am fighting so hard to be ok, and I am only getting worse. Is it Kyprolis not effective any more? The high dose steroids backfiring? Is Myeloma just too powerful for my weak body? Will I be able to receive treatment tomorrow? Did you see the note about the "critical WBC result". The on-call Dr called me around 10pm last night... wow, WBC of 1.0... Stay away cooties, as I'm super immune compromised... ugh...
Thanks for reading and caring everyone, and if I don't post again before the holidays, I hope you have a happy time with your families, whatever you are able to do, in these crazy crazy times. I'll post when I receive my Myeloma status labs, and also after my end of the month, last Dr appt of the year, Dec 29... Thank you for caring and commenting as you do, your virtual friendships mean a lot to me :))