The vultures struck, plucked and flew away leaving behind minimal evidence of disease and I’m not even dead yet. On Monday after a summer of VBiRD
ing I am happy to say there were no serious complications, manageable (but significant) dexamethasone
trauma and a response that makes it all worthwhile. Isn’t it nice how quickly we forget the shit that was so dramatic when it was happening. The mind is a wonderful thing. I’m grinning from ear to ear, basking in the glory of a 8 week reprieve from all things myeloma. Yup no drugs, no pokes, no dex, no weekly infusions and no abuse of all things not aligned with my demented mind.
The semester started the week of my last dex dose (August 30th). Chaos and entropy rained in buckets with occasional flashes of lightening and claps of thunder. It is extremely hard to show up to class prepared when staying on task is next to impossible. At least I had plenty to say, ample energy to say it with and no real need to be coherent, comprehensible or cognizant – there were (and still are) 360 rolling eyes staring back at me. Who is this whack job and why is this a required course? At least I find it entertaining. Lets hope there is a bit of meaningful learning going on.
On the boring MM details front: there is no quantifiable indicative protein spilling out of my kidneys, no quantifiable M-spike, not quite normal levels of my malformed indicator of importance, lambda free light chains, totally normal blood chemistry including beta-2, LDH & CRP, my first normal non-anemic hemoglobin in over 6 years, and hopefully quickly recovering disease attacking antibody expression.
To counter the 4 months of twice daily Biaxin
I started making my own kefir
(pronounced keh f é-er
[as in keh
ttle, and fear
]) using organic grains containing over 50 pro-biotic bacteria strains and organic milk I added several isolated human strains from Metagenics to the culture as well. There is no regulation of the word probiotic so the implication that it is pro-health for humans is a fallacy. The back story being that just because they contain an acid-loving milk-bacterium (like a strain of lactobacillus acidophilus) doesn’t mean the particular bacteria strain promotes healthy digestion for humans. Sort of like not all cars are created equal. Porsche’ do not drive like Yugo’s. We will be hearing more about how much the bacteria in our digestive track effects our well being as the studies investigating the links between obesity and malnutrition to digestive bacteria are completed in the coming months and years.
I never found a good counter to dex (Valium or Xanex & Marinol worked the best). Curcumin is synergistic with Velcade (so I took it). Neem has had profound efficacy for some with CLL (so I took it). Resveratrol (pronounced in my world ‘reverse it all’) has clinically documented anti MM properties (so I took it). Vitamin D, B12, Calcium & Magnisium were all recommended by my oncologist (so I took em). That about covers all the boring MM details.
The most important part being I’m psyched about normalcy. A term rarely applied by others to me but with profound emotional significance at least within my own head.
Still laughing at those plasma cells!