Hello August that is so far, so much better than July!
Happily I don’t have any new news for you since my last posts and I am thrilled to have July’s craziness behind me! I’m looking forward to seeing how my body responds again to Darzalex every other week, 2x per month. My first “retro” infusion will be next Monday, Aug 13th.
I’ve been very very fortunate that the triplet of Darzalex, Pomalyst, Dex steroids has been as successful as it has been since March 2017. My IGA began rising early this year by a few 100 points per month, and is now around 1430 (normal = 70-400), hence my “insistence” that we try going back to 2x per month infusions, back to when my IGA was in the hundreds, not thousands. Drs worry about doing what is not a standard protocol, but what the heck, if it worked once, it hopefully will work again. And it seems like most every treatment we do with Myeloma is a “science experiment anyway, so I’m certainly willing to try something that worked before, that hasn’t been “officially studied or researched”. It’s the new treatments and clinical trials, with new unknown side effects, that scares me… the UNbrave cancer patient I have become :))
Perhaps I live in a “myeloma dream world”, wanting, hoping, expecting to remain on the same treatment for a while, but darn it, I want whatever “quality of life” I can have, while I can. Quality of life for me, is manageable, somewhat predictable side effects. Yes, I have lousy side effects weekly, but at least I have some predictable consistency in my limited life. Fighting cancer and dealing with my body’s betrayal for 8.8 years is exhausting, day in and day out. As I always say… can you even imagine Knowing you’ll be “sick” every week? Imagine- weekly, daily, trying to Plan some semblance of “living” around treatments, crazy, debilitating side effects, and the the “unknown” surprises”. It’s daunting and mind bending and truly exhausting. I still cannot believe this is MY life.
Last Darza infusion, July 30-
Got to hang out in the chemo lab
with my fave volunteer, Karen xoxo
Met a new cancer warrior Paul
And here I was with girlfriends, summer 2009
just months before I was diagnosed
My IGA was over 5750,
M Protein around 4.3
And first BMB showed 70% myeloma cancer
Yes, I must live life while I can
If only side effects and debilitating FATIGUE
would stop sabotaging me…
But then again, there are those
that are in and out of the hospital weekly, monthly
And myeloma bone lesions break their bones regularly
One Day At a Time-
I’m always grateful for all the good
I am so fortunate to have in my life.
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!