Saturday, September 30, 2006
9.30.06, A Settling Process
Just a quick check in for now, though I'll try to post more tonight. Today's Franky Scale is somewhere in the 6 range; and yesterday maybe fell into the 4 range at some point. Post general anaesthesia never feels great to me, although the procedure itself seemed much better than my last EUS/endoscopic ultrasound, less tearing up of my throat, now swallowing issues, or feeling like that epiglottis thingy in the back of my throat my actual come of and get swallowed. That last one when they took the biopsies was just shitty. So the post-procedure day was difficult with gut pain and the slow dying off of my celiac plexus, the gradual easing off of the local anaesthetic, and just fatigue from chemo left over. Today's a great improvement. For what it's worth.
Friday, September 29, 2006
9.29.06 Pre-Results of NCPB
First result, I am alive. I survived the, granted, minor, procedure this morning, by which they were slipping a hose equipped with ultrasound and a fine aspirate (called this?) needle down my throat, found the celiac plexus, then loaded that sucker up with pure alcohol. In five to ten (5-10) days the nerves of the celiac plexus are supposed to wither up and suffer a neurolytic death right before my eyes. The hoped-for benefit being that the majority of my pain will drastically diminish or disappear. We wait and see on this.
Seventy-four percent of patients who undergo this procedure experience decreased pain, so the odds are good and so far I've demonstrated I'm one to beat the odds. At least, I should clarify, one to finagle my way into the small odds group. The unlikelies. So within ten days I should know that; and the other key number is fourteen (14) which is the outside number for feeling any relief. That is, if I feel no relief by the end of two weeks, we assume it didn't work and I can choose to try and do it again — I assume that one would be "free." Kind of a two-fer one deal.
Anyway, today I sleep a lot. Ate Indian food for lunch, during which Ted dropped by and inspected my well-being generally. It's been a while actually. Now I just kind of fritter around and re-examine all the physical feelings I'm having: more or less pain? is that new pain I'm feeling from the alcohol injection? is that feeling of tenderness from the hose shoved down my throat? Lots of such questions. It's become just part of life for me. The crazy set of thoughts I have, especially when compared to my thoughts "before cancer," is so wild.
"Before cancer," that's almost a good book title, or title for this period I'm no living through — though it's not very accurate, so we have a problem there. I am still taking suggestions, btw, for any one interested, and I have the heretofore suggestions in a file stowed away, waiting to be dropped into the bottle before the ship is sucked into the whirlpool. For now, though, thoughts of dinner, and is that a new pain or from an old corner of my mattress?
Seventy-four percent of patients who undergo this procedure experience decreased pain, so the odds are good and so far I've demonstrated I'm one to beat the odds. At least, I should clarify, one to finagle my way into the small odds group. The unlikelies. So within ten days I should know that; and the other key number is fourteen (14) which is the outside number for feeling any relief. That is, if I feel no relief by the end of two weeks, we assume it didn't work and I can choose to try and do it again — I assume that one would be "free." Kind of a two-fer one deal.
Anyway, today I sleep a lot. Ate Indian food for lunch, during which Ted dropped by and inspected my well-being generally. It's been a while actually. Now I just kind of fritter around and re-examine all the physical feelings I'm having: more or less pain? is that new pain I'm feeling from the alcohol injection? is that feeling of tenderness from the hose shoved down my throat? Lots of such questions. It's become just part of life for me. The crazy set of thoughts I have, especially when compared to my thoughts "before cancer," is so wild.
"Before cancer," that's almost a good book title, or title for this period I'm no living through — though it's not very accurate, so we have a problem there. I am still taking suggestions, btw, for any one interested, and I have the heretofore suggestions in a file stowed away, waiting to be dropped into the bottle before the ship is sucked into the whirlpool. For now, though, thoughts of dinner, and is that a new pain or from an old corner of my mattress?
Thursday, September 28, 2006
9.28.06, Go in Fear...
Go in fear of abstractions. Fine, just don't go in fear of chemotherapy. There are a lot of thing one's psychology can lead a person into, with smells, small pricks, extended stretches in an adjustable bed, and hospital eating, a lot on the down side, but we keep doing it every week. Today, too, chemotherapy and its joys. For all I know it might even be helping. Something we should learn in about two weeks when I do the next restaging with Dr. Whiting, the CT scan machine, and more bloodwork.
For today, just this, "hello," I won't give you a Franky Scale for today, I mean I'm about to swallow chemo drugs and I havn't even had my fucking coffee. (think the 1970s commercial for 7-Eleven coffee where the guy is driving to work in a convertable and he has a wolf face to all his neighbors and other commuters, UNTIL he gets his coffee at Sev...) It's me too. But yesterday was 6 to 7, backing up and down to each number. Got higher with the day however. After the marathon of travel from JFK to SEA-TAC two days ago, fogettaboutit.
Clear Pile of Shit award today: (after I unconsciously plugged them too! Goddam it.) the winner is 7-Eleven for deciding to stop selling CITGO gas, from Venezuela. A gas we've come to love as the only kind you can buy in the US, that I know of, that isn't like putting blood money into your car. Shit. Shit. Shit. I feel this one. I am not happy with Sev today.
For today, just this, "hello," I won't give you a Franky Scale for today, I mean I'm about to swallow chemo drugs and I havn't even had my fucking coffee. (think the 1970s commercial for 7-Eleven coffee where the guy is driving to work in a convertable and he has a wolf face to all his neighbors and other commuters, UNTIL he gets his coffee at Sev...) It's me too. But yesterday was 6 to 7, backing up and down to each number. Got higher with the day however. After the marathon of travel from JFK to SEA-TAC two days ago, fogettaboutit.
Clear Pile of Shit award today: (after I unconsciously plugged them too! Goddam it.) the winner is 7-Eleven for deciding to stop selling CITGO gas, from Venezuela. A gas we've come to love as the only kind you can buy in the US, that I know of, that isn't like putting blood money into your car. Shit. Shit. Shit. I feel this one. I am not happy with Sev today.
Tuesday, September 26, 2006
9.26.06, New York's All Right, If You Like Saxophones...
Friday evening I arrive at JFK, meet the Disenchanted Princess, and am off to Long Island. There is the strange phenomenon of actually being able to sleep on planes now, and that’s the only unusual thing about my flight. Normal, sleepy, a single jump from Washington to New York.
As it turns out, this weekend was enchanted and surprises were in store. Saturday was to be a nice quiet night, just K and I going to dinner in the city and then to Birdland for Joe Lovano’s commemorative show on Coltrane’s 80th. K’s place is just an hour outside the city so we would probably just drive in, find one good parking spot, then use that as our HQ. Then K started asking how I’d feel about some additional plans for the city earlier on Sat, friends of hers, we could hang out, then change clothes there, go to dinner straightaway, about 6:30, etc., but lugging clothes, meeting new people (yes me being selfish about new people — candidly, it tires me out more that almost any other activity now), putting on my game face for so long, then the two of us having our night out, it began to swirl in advance. I knew I’d be too drained. And had been so looking forward to this show, and heading back to this restaurant, the Shark Bar.
Finally she ‘fessed up: we had a room at the Iriqouis, on 44th two doors down from the Algonquian. Great! Actually less stress, now time to stroll parts of the city, have a coffee in Bryant Park by the big public library branch. Ahh. Ms. K, however, continued to act strange, still, having said something to the bell boy under her breath, and that she wouldn’t relay to me! Sneaky, sneaky, sneaky. Going to our room, next, the bell boy opened the wrong room, some woman is lying in bed in there — now mortified! “Where the hell is our room? What is up, man?!” is what’s going through my head. This place seemed really nice, I didn’t get it, why the screw ups. Finally we’re in our room, but he’s got keys for the blond-in-her-bed’s room, so we’re out of luck. “I’ll be right back up with your room keys,” he says, still taking the tip that’s begrudgingly slipping from my hand, a question mark still in my eye.
Ten minutes later. There is a knock, they keys of course, so I go over and open the door. Holy shit! Who do I see but St. Francis, the blond from the bed, and some guy who's a cross between Frank O'Hara/James Bond pulling up the rear (turns out to be an old childhood friend of Frank’s, A.C. — just like in the O.J. chase). The hallways spins. What’s happening? The secret mumblings from K should’ve been the give away, but I didn’t want to be a schmuck and pry or demand to know a non-event. Then the knock from Frank killed me, he and 34DD giggling like kids, me stunned stupid and speechless, and all of it accentuated by A.C. since we’d never met before, & I’m in my shirtsleeves, as they say, etc. The dials on are the Franky Scale began to spin confusedly, reading out a series of “6” “4” “7” and “8” then “1’s” and “10’s” randomly. That is a pretty damn good surprise to pull off 3500 miles from home.
So it began. We talked, hung out a bit, took a fiver, got dressed, prepped a bit more in our rooms — then off! The Lovano show was excellent, and I think I’ll include a quick show review later for the music nerds out there. Lovano’s totally solid on the tenor, seems to work at channeling Coltrane, in his own way, and does succeed in recreating some of the same moves, transitions, and little licks. The double bass play, though, was incredible.
With that kind of night how could your Franky Scale be lower than an 8?
One realization struck me during the show, something I tried to pass on to everyone that night, but there seemed to be something untimely about it. At a few points in the show Lovano let the basses loose and the senior player Henry Grimes would let off into a game of follow the leader, so each instrument was in part echoing the other, throwing back to it additional riffs, turns, and interpretations. It’s hard to explain, but a phenomenal moment. And what I thought to myself was that such a musical moment is a place you could intentionally get lost, a place where all concern could fade away, a place to find yourself at the last and lonely instance. Despite its reality, that last instance isn’t popular parlor talk, so in our rooms after the show we kept it light, discussed the relative effectiveness of creating ichthyological metaphors to explain human uniqueness and beauty. Keep that word “relative” in mind.
* * *
P.S. — I don't know if I posted this info before but I upped my NCPB procedure date to the 29th, in the morning. It had been Oct. 2 but this way it'll be done right before moving, I'll have better company, and possibly the pain relief will come a few days sooner. So, Sept. 29, another endoscopic ultrasound procedure.
As it turns out, this weekend was enchanted and surprises were in store. Saturday was to be a nice quiet night, just K and I going to dinner in the city and then to Birdland for Joe Lovano’s commemorative show on Coltrane’s 80th. K’s place is just an hour outside the city so we would probably just drive in, find one good parking spot, then use that as our HQ. Then K started asking how I’d feel about some additional plans for the city earlier on Sat, friends of hers, we could hang out, then change clothes there, go to dinner straightaway, about 6:30, etc., but lugging clothes, meeting new people (yes me being selfish about new people — candidly, it tires me out more that almost any other activity now), putting on my game face for so long, then the two of us having our night out, it began to swirl in advance. I knew I’d be too drained. And had been so looking forward to this show, and heading back to this restaurant, the Shark Bar.
Finally she ‘fessed up: we had a room at the Iriqouis, on 44th two doors down from the Algonquian. Great! Actually less stress, now time to stroll parts of the city, have a coffee in Bryant Park by the big public library branch. Ahh. Ms. K, however, continued to act strange, still, having said something to the bell boy under her breath, and that she wouldn’t relay to me! Sneaky, sneaky, sneaky. Going to our room, next, the bell boy opened the wrong room, some woman is lying in bed in there — now mortified! “Where the hell is our room? What is up, man?!” is what’s going through my head. This place seemed really nice, I didn’t get it, why the screw ups. Finally we’re in our room, but he’s got keys for the blond-in-her-bed’s room, so we’re out of luck. “I’ll be right back up with your room keys,” he says, still taking the tip that’s begrudgingly slipping from my hand, a question mark still in my eye.
Ten minutes later. There is a knock, they keys of course, so I go over and open the door. Holy shit! Who do I see but St. Francis, the blond from the bed, and some guy who's a cross between Frank O'Hara/James Bond pulling up the rear (turns out to be an old childhood friend of Frank’s, A.C. — just like in the O.J. chase). The hallways spins. What’s happening? The secret mumblings from K should’ve been the give away, but I didn’t want to be a schmuck and pry or demand to know a non-event. Then the knock from Frank killed me, he and 34DD giggling like kids, me stunned stupid and speechless, and all of it accentuated by A.C. since we’d never met before, & I’m in my shirtsleeves, as they say, etc. The dials on are the Franky Scale began to spin confusedly, reading out a series of “6” “4” “7” and “8” then “1’s” and “10’s” randomly. That is a pretty damn good surprise to pull off 3500 miles from home.
So it began. We talked, hung out a bit, took a fiver, got dressed, prepped a bit more in our rooms — then off! The Lovano show was excellent, and I think I’ll include a quick show review later for the music nerds out there. Lovano’s totally solid on the tenor, seems to work at channeling Coltrane, in his own way, and does succeed in recreating some of the same moves, transitions, and little licks. The double bass play, though, was incredible.
With that kind of night how could your Franky Scale be lower than an 8?
One realization struck me during the show, something I tried to pass on to everyone that night, but there seemed to be something untimely about it. At a few points in the show Lovano let the basses loose and the senior player Henry Grimes would let off into a game of follow the leader, so each instrument was in part echoing the other, throwing back to it additional riffs, turns, and interpretations. It’s hard to explain, but a phenomenal moment. And what I thought to myself was that such a musical moment is a place you could intentionally get lost, a place where all concern could fade away, a place to find yourself at the last and lonely instance. Despite its reality, that last instance isn’t popular parlor talk, so in our rooms after the show we kept it light, discussed the relative effectiveness of creating ichthyological metaphors to explain human uniqueness and beauty. Keep that word “relative” in mind.
* * *
P.S. — I don't know if I posted this info before but I upped my NCPB procedure date to the 29th, in the morning. It had been Oct. 2 but this way it'll be done right before moving, I'll have better company, and possibly the pain relief will come a few days sooner. So, Sept. 29, another endoscopic ultrasound procedure.
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