Cancer magic

Cancer can really alter your mindset.  If you're lucky, before it kills you it can change the way you and those close to you experience being alive.  It's a bizare thing to both dread and cherish  something as double edged as a terminal illness.  It's not my body; it's not my life, so it seems unfair that it gives me the gift (only occasionally)  of those crystal moments of feeling the breathtaking beauty of being alive.  

Usually I'm mired in all the things I should have gotten done that I haven't.  Two days a week tied up in treatment and the residue of dealing with Gil's sleeplessness doesn't always leave me philosophical     but     

when I get my head out of the muck

I see the guy I married as the precious generous spirit I married , and the egg laying chickens who (twice!) walked through the electric fence in the pasture I was trying to move them in to as my teachers about the power of home and the familiar and that, with patience, I will be able to bring them to grass (next year, next year, [the gardener's chorus])

Cancer shakes me out of my sense of entitlement.  What I got  is   WHAT I'VE GOT! 

and I'm grateful.

August update

Not quite two months in to the clinical trial, and Gil's "numbers" are looking good.  It seems that he'll be a responder to this drug.  His creatin and other measures of kidney function seem to be getting better and his red and white blood count also are improving.

We had a scare last week (not totally resolved yet) of what appeared to be a return of the dreaded kidney stones!  [Gil had some major impassible kidney stones a year and a half ago, the ongoing kidney poor function could have ben a clue of the Myeloma] He'd found out that they were uric acid based and last summer/fall with restricted meat and alot more liquids, milk products and veggis had brought it down to normal.  Since the Myeloma diagnosis we kinda fell off the wagon and have been eating far too much meat protein.  Back on the wagon this week has been hard on the meat loving guy.  Good thing I like a culinary challenge: to make tasty don't notice there's no meat dishes.  I'm open to new recipes, if I can figure out how to read blog responses!

What we need to keep on top of is Kidney function.  Apparently the Myeloma produces "gunk" in the blood (platelets? calcium excreted in to the blood?) which functions like glue clogging up the kidneys and producing scar tissues which obviously reduces kidney function.      The stones (unrelated) don't help.  Drinking enough water and cleaning up the uric acid are things we can do .  Good for me too!

The other big concern right now is the major side effect of all the Myeloma drugs, peripheral neuropathy (nerves in the hands and feet dying).  I sort of understood the mechanism but can't recall enough to explain.  Unfortunately, along with being a responder to this drug, he also seems to be somewhat more sensitive to the neuropathy.  We're trying some nutritional supplement and heat alternative med ideas.  If it becomes serious, it could stop him early in this trial.  But as the Doc said, there are other meds to try which might have less of this side effect.

Our goal, hope is by Christmas to get Gil's numbers to a stable spot that can hold even if he pulls back on the drugs ("a pretty good" remission) or the gold standard, a complete remission where his numbers are basically back to normal and hold stable off the drugs.  With Myeloma these won't hold forever, but we know folks who have had years!

Last concern with the clinical trial meds (Velcade and dexamethazone) is the side effect of the dex.  One or two nights a week he gets little or no sleep.  Unfortunately he's used to sleep deprivation and may not always realize how much it's influenced his ability to function (judgment, use of power tools) We've had some luck with a massage "bed" which I'll write about in another blog.   

I think I should probably do more frequent little updates, if my comfort level with this rises as I'm sure it will.