First of all, thank you to my followers for your detailed replies and suggestions on my previous post! I truly, very much appreciate your comments and insights!!! Thank you to all my invisible followers too! I appreciate you checking in and reading my musings.
I’ll (try) to make this short(er) than usual, as I will have more of an update after my 2nd oncology appointment next Friday.
To be honest, I have been too optimistic (perhaps naive), trying to see my situation as better than it actually is… hence MY stubborn stupidity at remaining on low dose chemo. So after my oncology consult this past Thursday with my City of Hope SCT Doc, who very nicely (but seriously) let me know that the low dose Revlimid I am on needs to change NOW, if I am to make an impact on the increasing levels of cancer within me. Ok I get it. Myeloma is winning right now.
Dr Spielberger (who is Director of the Kaiser-City of Hope Hospital Bone Marrow/Stem Cell Transplant Department), clearly let me know that I should be doubling(2x), tripling(3x), quadrupling(4x), quintupling(5x) the level of Revlimid I am on. And if Rev and Dex stops working for me, we’ll move on to all the other Myeloma mashers!
I laughed when he wanted me to jump from 5mg to 25mg ! ahahaha Doc… kill me fast! I reminded him of my death defying allergic reax in 2010 when we went from 10mg to 15mg. I quickly developed a lovely blotchy, patchy, raised rash moving rapidly over my body. I looked like my Appaloosa horse RedBear! I had to eat Benedryl like candy and we immediately stopped the 15 and went back to 10, and stayed there for the remainder of my initial 2010 treatment. Doc said ok, ok, we’ll start slower… how about trying 15 next RX?? Hello.. NO, I said… let’s be gradual here and go from 5 to 10 and then see if I can tolerate 15. He’s very amused by me, in a good way :)
Why this now, after a few months of (minimal) success? My Myeloma contaminated IgA immunoglobulins haven’t stopped rising (4x the high end of normal), and my M-spike is spiking more. And you know what??? I secretly knew. How? I’ve been a sickie most all of March. (I have to always remind myself and others: MYELOMA IS A COMPROMISED IMMUNE SYSTEM CANCER! So no wonder I am always sick! duh Julie!)
I only went in to my office a few days this month, and the times I did, I shouldn’t have. Last week, the one day I went in, I was so dizzy and tingly (from hardly eating for a week), I thought I would pass out!!! I told my sweet mom/daughter student appointment that I felt faint, just in case I did a face plant on my desk!
First I had a crazy sinus fever thing for over a week to 2 weeks, then a week-ish later, I developed lower GI volcanic issues… where, (sparing you the gross details), my bathroom became my permanent residence and office. I thought, this will pass, probably related to medication overload. So I contacted my local oncologist and we reduced the levels of Mepron and Acyclovir (even though she didn’t think that was the cause, but wanted to see if my GI would calm down). Well it didn’t, except on Dex steroid days. I even tried going out to dinner with friends, and again, sparing you the details… had to leave the restaurant FAST, ditching them and Jim, racing home and “praying” I wouldn’t ruin Jim’s car … BARELY making it to the bathroom… ugh… that was sooooo awful!!! I’ve lost 5 pounds this month, but that’s ok. What mid-life girl doesn’t want to lose a few pounds? Well, not this way, thank you very much stupid Myeloma challenged immune system!
And so, realities are (finally) setting in:
I have cancer
I’m a sickie
I feel lousy more than I feel good
I can’t do much of anything, as I have to stay close to my bestfriend “John”
Cancer is winning
Myeloma is stronger than me
My internal Army, Navy, Marines, Air Force, needs better “ammunition” asap!
My immune system continues to fail me
I have felt yucky most all of March
And this… is my “March Madness”
But I will battle forward and increase my friend Revlimid
I will eat Benedryl like candy if I have to (I like that it’s hot pink!)
I will TRY to accept that I have cancer, and I am not the Julie I used to be
And I will savor the good days, and be pissed at the bad days, but I will never give in Myeloma!
You hear that Myeloma… I’m not giving in or up. I’ll fight until I can’t !!!
Simple explanation of IgA immunoglobulins. Funny how certain article realities finally sink in!
LOL- not so short post after-all!!!
Thanks for reading and caring, and I will update on my medication plan in a week or so.
Thank you followers!!!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!