I'm told by some of my literary advisors (Mrs. Rosen) that I need to talk more about myself and how I feel. That's not really my "jam" - to talk about myself or my feelings (who really cares). But, since this blog is about myself and my feelings, I guess I've already committed to that level of intimacy and transparency. So here it goes.
Looking back on a number of the things that I have experienced (scientific / medical things), sometimes I feel like a lab rat. Not in the sense that my treatments have been clinical trials or risky, unproven therapies, but every once in a while, I get this feeling like I'm living under a microscope. I accept that this perspective doesn't necessarily make sense, but it's just how I feel at times.
- My journey started with an autologous stem cell transplant. Not a radical procedure in itself, but rather new as a therapeutic alternative for those of us with Multiple Myeloma (MM), which did carry with it a certain degree of risk and uncertainty. Not around survivability, but around the possible side effects and the potential longevity of efficacy.
- Over the course of the past 7 years I've had a number of varying Chemo Cocktails to see which combination brought the maximum results with the minimum adverse reactions - for as long as possible (before the inevitable relapse, and renewed increase in my myeloma cell production). The last mixture - DPd (Daratumumab + Pomalidomide + Dexamethasone), had been keeping me level for about the last 4 years.
- And, if you've been with me for the last few months (since 7/14/25), you'd know that I had a CAR-T cell procedure to help comprehensively arrest the development of MM cells within my system, and set me into chemotherapy-free remission (which seems to have been achieved - judging by initial results). This one was actually relatively "experimental" (though the Carvykti was fully FDA approved 2/28/22), such that my physiological reactions were somewhat unpredictable (I ace'd it). I even agreed to have the details from my procedure added to the growing database of user experiences (for the advancement of science and understanding).
I've been poked (endless blood draws) and prodded (multiple bone marrow biopsies), scanned and viewed (MRI, FDG PET/CT, WBLDCT), and regularly have thorough analysis of my DNA. It's all good and much appreciated - but I still have this funny feeling about it. (Oh, and if I'm truly sharing my feelings, I wish they'd change the shredded newspaper on my bedroom floor a bit more often.)
