Friday, August 18, 2006

8.18.06, Upcoming Procedures & Book Tidbits

Sitting here in Seattle it's only 78, but I have a black cat at my left (on floor expectant) and an orange one at my right (on the floor sprawled).

Today another Pile of Shit Award today, to Mr. Bush, for his brilliantly argued and highly articulate refutation of the court decision that wire tapping any random US citizen at will is, in fact, unconstitutional. Others beside Bush, we are told, "do not understand the world in which we live." Huh. Would that Huxley and Orwell were less prescient.

Upcoming, after a discussion with Dr. Whiting yesterday on pain management issues, I'm going into the administrative pipeline for a bone scan and possibly another EUS (the always pleasant endoscopic ultrasound, hoses slid gently down the throat, into the guts and then a very scientific form of voyeurism — what are they doing in there? The nerves that is.)

A bit more later on what's involved with each but for now just the teaser...

And a Franky Scale number of a slight 6 or near 5, the first part of the day going fairly well and I was able to get out and do some work, the infamous and highly secretive writing cabal, W.OR.D., met once more — at least with me there too. Now later in the day some fatigue is setting in, probably from the chemo. This round of chemo with the new order of drugs means a new learning curve. Yesterday I was given only taxotere & now I wait and see how my body likes it. Every week I get IV chemo they do a blood work-up on me, not all of the results are that interesting, but one small issue is that I'm still a bit anemic. A few months of it at this point.

Book tidbits from What Dying People Want:
— The author frequently emphasizes listening and hearing, which means he gets it. Here is one example. P. xx.
•Here is his research goal, to find out "What is it like to get up every day knowing that the disease within you will likely cause your death? The methodology I [the Dr.] used was that of existential phenomenology. What does that mean? It means that I had to stop being a detective. I had to learn to listen, not only with my ears but with my heart as well. I had to set aside biases, to stop seeking to predict, exlpain, or control . . . . I had to suspend judgment and hear the testimony, to bear witness to the experience of living and dying with a terminal illness."

I, myself, don't know what it's like to be your shoes. I wont front. What Kuhl writes above, though, makes very good sense from my perspective. The few times I've been offered presumptuous advice or an other's projected desires, it falls pretty flat with me.

— With family, and friends, people often don't realize when processing their grief that *they have no more time*, what they have for sure is NOW. P. 28.
•"I wanted to tell Ben [terminally ill] and his family that the only time available to them is now. One thing that they do not need to wait for is the work that could be done with regard to their relationships, to speak the unspeakable, to really hear what they have to say to one another, to share their memories — the challenges and pains they experienced as a family."

It may not all have to be said Today, still we need to remember that our normal fear and procrastination patterns don't serve us well anymore.

— The patient doesn't often hear much of anything, literally, after the word "cancer" or "terminal," etc., are uttered by a doctor. P.52.
• "I have come to realize that once people hear words such as "cancer," "AIDS," "no more treatment options," of "ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), they do not hear anything else."

I point this one out simply because it's uncanny, to me, this is just what I felt. It is a physical shock. Ted was sitting there to my right when I was told and I'm not sure what he heard or felt. But for me, the words "I can't do anything to cure you" and "The average longevity in this situation is about 6 to 8 months" were a bit like a surprise blow to the head, a real and forceful one, say with a 2 x 4 or rather a 4 x 4. For a few moments I had to try and focus, make sure I could maintain my vision, my actual ability to see and not tunnel, and make sure I wasn't going to pass out. Listening came a few moments later, even though my hand with the pen in it kept moving across the page while most of this was happening. That's the socio-cultural origin of cool, poise when you have no other alternative ;-)


Anonymous said...

keep struggling to find the right words - haven't been commenting (though i have been reading regularly, several times per day for updates) - figure silence is best sometimes, especially when i on't have anything helpful or intelligent to say. always wish you pain-less* if not pain free days...though i sense things are somewhat less 'stable'. i hope you're still FIGHTING -

Mr. Jones said...

Thank you for the post and for keeping up with the blog. It means something to me to know people read at least, if it doesn't actually help out there somewhere. And please don't worry about seeming helpful or intelligent, it's not about that, from my end. Pain-less days would be great, but I settle for well "managed" days, so that's almost as good. It is what it is. Kept in check I function all right. And I have FIGHT, too, I hope that shows through to some degree. Don't worry on the fight side of things; ask my mom, she'll tell you I can be good and "ornery" when I need to be.

In terms of stability, the disease itself is supposed to be progressive, but mildly so, so we think; which is not far from stable. As for me, I'm pretty stable though on the blog I try to be candid about what I'm thinking, which means you might get an earful on some days. Part of the process no doubt.

Anyway, thanks for stepping out from among the lurkers for a moment and for the good wishes. -Mr. J