Batting a Thousand

July 25, 2008

…or however that baseball reference goes, O Best Beloveds. It’s my increasingly crappy titles and I’m looped on Ativan, so it’s the best I can do. The point is that Navilbene, and, arguably, every treatment used in these past three years, has failed consistently, and in this particular case, spectacularly with the result that today’s numbers went over a thousand for the first time. 1043, to be precise.

“First of all, you aren’t dying,” said Dr. W, by way of reassurance, and it’s certainly nice to know. “And secondly, I’m not hiding anything from you.” Well, okay then.

The current plan is a long meeting with Dr. W. next week to go over everything that has been done to me for nearly eleven years, and come up with concrete plans based on various scenarios and options. (Of course, put it all that way, and it sounds anything but concrete and specific!) I will also have new PET and bone scans, plus an MRI of my liver for a change of pace. Based on the results of the latter, and the decisions from the former, we will then have a new plan. Right now, options are leaning towards Doxil, a relative of A/C, my very first chemo way back when. (Ah, such nostalgia!) Speaking of reassuring, it’s good to hear this is very well tolerated chemo, no hair loss, no nausea, no weight gain. But hand/foot syndrome! Well, been there, done that and also the devil you know, and let’s face it, only the chemos that do something to me seem to do something for me, even if it’s just for a short time. Ah, Navilbene; you were always too good to be true.

So more answers next week, and many more the week after that. In the mean time, presumably, more stomach contorting shaking anxiety. It occurred to me that one thing I particularly hate most in the world is someone saying “We need to talk–let’s get together in the next few days.” My response is “No–let’s talk now.” Because “talk” rarely is something positive they want to say, like how you are secretly a princess or get a free pass at a PhD. without a lot of the hard bits, or something. It’s usually some negative bit of info that rarely brightens one’s day. So I would rather get it over with, know the worst, and begin to deal with it, rather than spend some pointless hours dreading it and imagining all sorts of unpleasant scenarios. It makes me nervous and anxious–hey! So there we go! I’m sitting in the middle of an increasingly long series of “we have to talks,” and the news is not getting any better with time.

I’m coping a little better with the anxiety, though a combination of extra meds on top of the ones that are officially supposed to improve matters significantly, to wit, I’m popping “kitten doses” (I’m a lightweight) of xanax and ativan every couple-three hours (doses are so small the frequency isn’t a problem), which keeps the worst of it under control–not gone, but manageable enough so I can function, school wise, study wise, work wise, social activity wise, if a bit logey and less enthusiastically than I might like. It’s not ideal, but it’s some kind of relief, and I needed it. Meanwhile, there is a small small sign that maybe the official meds are starting to have a small effect on their own. Let’s not jinx it, but clench a few thumbs in this direction. And more updates on all of theses in the next week or two.

Then again, Steve notes that I hit my own new personal best, number-wise, just before the Olympics!

Though unlike with athletes, I would prefer that this is my peak now, and that there aren’t higher ones still to come.

Oh, and I almost forgot to add that whatever the next treatment is, it must be scheduled around this year’s Plucky Survivors See America 3: The Plucky Shall Rise Again. As always, it will all be daily blogged, and updated semi-daily for some weeks before that, only now it has its own web site:  Preliminary info is up about this year’s plans–Biblically themed mini golf, state bbq championships. Scopes Monkey Trial museum and so much more kitsch–go check it out and we certainly hope you will be along for the ride!!