Neither Here Nor There
9/25/07

Frustration is creeping in, O Best Beloveds, right on the heels of glee. First of all, Xeloda would be swell, as chemos go, if it weren't for that Hand/Foot Syndrome. I'm trying to describe it without grossing some, if not all of you, out, but since part of doing this is to explain what's happening so that if for some terrible reason you or someone you know has to go through this, you have an idea of what to expect, I'm going to go into a few semi-grotty details. So skip to the next paragraph for the rest of the non-yuck factor updates if you prefer. Basically, Hand/Foot Syndrome manifests in peeling, blistering extremities--imagine the worst case of dry palms and soles you've ever had, toss in a thick callous or twelve, plus the effect created when a blister is healing, cross it with the desiccated corpse of an Egyptian mummy, and then slip inside it like you are wearing gloves and socks. Inside, I feel fine. Outside--it's like I'm wearing that Egyptian mummy. My skin is cracking and peeling off in huge chunks, pretty much all the time, which is so so so pretty, and what is left behind is tender and raw. I sprout blisters just by existing. There came a day when I couldn't walk, or uncurl my hand (because doing so cracked the skin open), couldn't hold a pen or open anything with my fingers, not an envelope, not a bottle and certainly not the opening to my chemo container. I did whatever is called for with hands with my palms rather than fingers, which is so primitive. Also, I couldn't walk. Also, my toenails are starting to go, including my remaining big toenail. Also, I felt like complaining. I called Dr. W. and said "Uncle." He replied, to my great relief, "Stop the chemo cycle right now." I only had a couple days left in the cycle, so that wasn't taking a risk with regards to the healing process. I figured that the effects would clear up within a few days, but no...they've been going on pretty much non-stop, and here I am, back at the beginning of a cycle, when the meds will start it up all over again, and I've still got raw fingertips, peeling fingers and feet that turn sore whenever I walk more than a block. Again, it's bad, but it's endurable if I know it's for a limited time--say, next week--or if it only happens the last three days of a two week cycle (because at least foot pain is alleviated by strong pain pills and I can plan to not do much the days I need to take that, though even pills do not improve the inability to manipulate my hands with any accuracy) but forever?

So when I saw Dr. W. last Friday, I voiced my increasing concern about this. Or perhaps I whined it. He had already decided to decrease my daily dose--currently six large pills plus one small one--by removing the small pill, and hearing my complaints decided that since my numbers were so favorable, that if my counts went into the 50's this time, which he was confident of, he would cut out one of the large pills. I was to call on Monday to get my results and approval to drop a pill. Reducing the dose that much, he was sure, would solve the hand/foot problem. Since otherwise I feel pretty good, if this really worked, I was delighted by this compromise.

Oh, the reason I would have the results on Monday--today--which is faster than usual is because the regular in house lab tech is on vacation until the middle of October. So they were sending the bloodwork out to their back up lab. Which is notorious for producing higher numbers than their regular lab. I pointed this out. They shrugged. The difference usually isn't significant, they said. But I remembered when we used it back when my numbers went up again this last time (in March), as a double blind to make sure their lab was accurate, that the difference was at least twenty points greater. And since I'm hoping for a fall from 78 into the 50's, that could be significant. No one seemed concerned about this potential issue.

Naturally, when I call today, my count is at 99. Which is up. Except maybe not, because this lab skews higher, remember. Oh, but wait; over thirty patients also got test results, and all showed increased numbers. Now, some of them COULD have higher numbers for real, but that's too many not to make everyone suspicious. And wait; the last time we used this lab, the difference wasn't twenty points--it was SIXTY. So my number could really be as low as 38, which is just at normal. Meanwhile, my other bloodwork went DOWN, and IS within normal range. So which is it? Up, down. sideways? Anyone's guess! Options include:

1) My numbers have dropped significantly.
2) My numbers stayed the same.
3) My numbers are rising.

You may notice that this tells us absolutely nothing. I might be in full remission, I might be going back into a big cancer attack, I might be totally stable. Everything is possible! It's Schroedinger's Cancer! Hooray! (Yes, my sarcasm increases with uncertainty.) And because the regular lab gal won't be back until mid October, about a week before I would go in for my usual monthly check, it was decided to let it go and wait until that test to see what's really what. But meanwhile, since the numbers didn't drop, I can't lower my chemo dose any more. Back to soaking my hands nightly in goose grease and cotton gloves. Neat. Because the best way to forget about what may or may not be growing in me is dealing with the constant side effects from the possible inefficacious meds.

I told you I was frustrated, Beloveds, so forgive how cranky this email is. You can only imagine how I was on the phone today. I did say "Do let's not use that lab EVER AGAIN," to my lovely medical crew, who responded "Yeah, we already decided we aren't doing this again." Because it's not just me; it's thirty other freaked out patients.

But I will stop complaining now and say--hey, we redid our backyard, after threatening to do so since we moved in six years ago, and it looks beautiful. I'm putting up Hindu god statues that deal with blocked situations and preservation, because I believe in covering my bases. Speaking of polytheism and never sitting still, we just planned a trip to Egypt for the end of the year, so I need to figure out a foot solution or else find an archaic crocodile god who is appealed to for the relief of scaly skin. Speaking of foreign countries, Steve is still writing his weekly world music blog and you should be reading it, because he's having the time of his life working on it, and longs to share it with many. (http://www.spinner.com/category/around-the-world/) Speaking of reading, a great many thanks to those who have read my book which the rest of you can peek at here.

And speaking of reading and ME; gosh, thank you so much, Beloveds, for being someone--and many--I can vent to.

Uncertainty R Us,

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