Howdy faithful readers: In honor of the recent good news I'm off to the San Juan Islands for the next two days. And by choice I'm going to cut myself off from all electronic communication. So here is my blessing of silence. Thanks again to everyone for the kind thoughts and messages (also due to some crazy spamming problem I've had to adjust the comments section so that you have to type in a key word to post, just to make sure no computer-generated msgs get posted, but otherwise it should still work smoothly.)
Love from the islands.
Mr. Jones, who feels about a 7 on the Franky Scale, but I'll push towards 10 while I'm gone.
Friday, May 19, 2006
Thursday, May 18, 2006
5.18.06, What ho, Horatio? [on the Restage]
I saw the doctor this morning--oh, wait you know this already--, to get a read on the radiography and labs, the Restaging we've mentioned before. Punch line first, good news. There are three points to share, most salient points anyway, and these describe the changes that have taken place over the past six weeks since I started chemotherapy. First, second, and third...
1. There has been a 20+ % reduction in the "cancer markers," this is the CA 19-9 number we discussed earlier, which corresponds with the amount of cancer in the body. The reduction, thus, indicates less cancer in my body.
2. Based on yesterday's CT scan, [drumroll please...] ... the main tumor in the pancreas has shrunk in size, in fact, and measurably. Length down to 5.9 cm from 6.7 cm; width basically the same as before. (NB: since the tumor is actually three-dimensional, the total size decrease might be seen as somewhat greater.) Additionally, one of the largest affected lymph nodes that was previously a concern has also shrunk, from 2.6 to 2.0 cm. Taken together, these numbers reinforce point #1 above, that there is overall 'less' cancer in the body. If we were doctors, we'd say "good news, but we're cautiously optimistic."
3. As for the liver metastases (the number of smallish tumors there), they are stable, and no new lesions have developed. This isn't as good as shrinkage but it's far better than enlargement.
So an overall interpretation, this is cautiously very good news, especially at this early stage (after only two chemo cycles--i.e., they restaged me "early" at only 6 weeks into chemo instead of 9 weeks in, which is usual). To see an actual size decrease on CT is doubly reassuring as often times the chemo will be working, but the size will remain the same. We got good news this time. Thanks to everyone who's been sending good vibes and various other forms of support.
There is infinitely more to say about further treatment, but for now, I'll continue with the GTX regimen I'm currently on; at least four more (3-week cycles) planned; and, they'll keep monitoring the vitals every week for four more cycles. Then, another restaging (CT, sitdown, etc.) to discuss the next steps at that point. For prognosis, let's just say it leans me toward the longer end of things--for now, though, the key is good news, moving in a solid direction, making headway. Enough of this blogging crap, I need to go relax and celebrate!
1. There has been a 20+ % reduction in the "cancer markers," this is the CA 19-9 number we discussed earlier, which corresponds with the amount of cancer in the body. The reduction, thus, indicates less cancer in my body.
2. Based on yesterday's CT scan, [drumroll please...] ... the main tumor in the pancreas has shrunk in size, in fact, and measurably. Length down to 5.9 cm from 6.7 cm; width basically the same as before. (NB: since the tumor is actually three-dimensional, the total size decrease might be seen as somewhat greater.) Additionally, one of the largest affected lymph nodes that was previously a concern has also shrunk, from 2.6 to 2.0 cm. Taken together, these numbers reinforce point #1 above, that there is overall 'less' cancer in the body. If we were doctors, we'd say "good news, but we're cautiously optimistic."
3. As for the liver metastases (the number of smallish tumors there), they are stable, and no new lesions have developed. This isn't as good as shrinkage but it's far better than enlargement.
So an overall interpretation, this is cautiously very good news, especially at this early stage (after only two chemo cycles--i.e., they restaged me "early" at only 6 weeks into chemo instead of 9 weeks in, which is usual). To see an actual size decrease on CT is doubly reassuring as often times the chemo will be working, but the size will remain the same. We got good news this time. Thanks to everyone who's been sending good vibes and various other forms of support.
There is infinitely more to say about further treatment, but for now, I'll continue with the GTX regimen I'm currently on; at least four more (3-week cycles) planned; and, they'll keep monitoring the vitals every week for four more cycles. Then, another restaging (CT, sitdown, etc.) to discuss the next steps at that point. For prognosis, let's just say it leans me toward the longer end of things--for now, though, the key is good news, moving in a solid direction, making headway. Enough of this blogging crap, I need to go relax and celebrate!
Wednesday, May 17, 2006
5.17.06, You'll Have to Loan Me Pain...
Here is the following poem, the poem following the Creeley one (from last post)--in my convoluted mind. From e.e. cummings' book No Thanks. Wonderfully titled, cummings being too much before his time had the manuscript rejected by Farrar & Rinehart, Simon & Schuster, ... Knopf, Dutton, Harper's, Scribner's, and many, many others. So the title is "No Thanks" and you open the books to see "To: Farrar & Rinehart,..." and all the other myopic editors and their employers. The poem here, "66" it might be called, or first lined "death(having lost)put on his universe" staggers me; and I suppose some who choose to do so can read it as a wager, with death and love, and opening with the punch line. (This was the primary poem that inspired me in eulogizing my nephew Daniel Ray Luna who, talk about dumb fucking luck, died before he started at 23--just about one year ago. An aside.) If it's a wager, here metaphorically death loses. In our waking wish fulfillment.
66
death(having lost)put on his universe
and yawned:it looks like rain
(they've played for timelessness
with chips of when)
that's yours;i guess
you'll have to loan me pain
to take the hearse,
see you again.
Love(having found)would up such pretty toys
as themselves could not know:
the earth tinily whirls;
while daisies grow
(and boys and girls
have whispered thus and so)
and boys with girls
to bed will go,
(Complete Poems, 1904-1962)
That, my friends, is a poem! Love and death in the lost and found; or, the wager between the two; what boys and girls will do, though "boys" and "girls" must be taken openly, inclusively here. (We'd lose half my family if not...;-) )
Enough from me. I'm off to lie on the table, and slide up and down--"Breath in" [PAUSE]....."Hold your breath"...[PAUSE] ... "You may now let out your breath"....[PAUSE, NOISE] "Breath in"..[PAUSE] ... "Hold your breath"...., belly filled with two quarts of the barium juice. And for those who haven't done it, don't believe the comments, the barium drink is pretty much as good/bad tasting as pepto or maylanta or any other chalky drink. It's a cake walk.
Too early to evaluate the day, but I'll say Franky Scale, 8, you get at least 8 points just for the cummings' poem.
66
death(having lost)put on his universe
and yawned:it looks like rain
(they've played for timelessness
with chips of when)
that's yours;i guess
you'll have to loan me pain
to take the hearse,
see you again.
Love(having found)would up such pretty toys
as themselves could not know:
the earth tinily whirls;
while daisies grow
(and boys and girls
have whispered thus and so)
and boys with girls
to bed will go,
(Complete Poems, 1904-1962)
That, my friends, is a poem! Love and death in the lost and found; or, the wager between the two; what boys and girls will do, though "boys" and "girls" must be taken openly, inclusively here. (We'd lose half my family if not...;-) )
Enough from me. I'm off to lie on the table, and slide up and down--"Breath in" [PAUSE]....."Hold your breath"...[PAUSE] ... "You may now let out your breath"....[PAUSE, NOISE] "Breath in"..[PAUSE] ... "Hold your breath"...., belly filled with two quarts of the barium juice. And for those who haven't done it, don't believe the comments, the barium drink is pretty much as good/bad tasting as pepto or maylanta or any other chalky drink. It's a cake walk.
Too early to evaluate the day, but I'll say Franky Scale, 8, you get at least 8 points just for the cummings' poem.
Tuesday, May 16, 2006
5.16.06, [New] Poem & Warranty Update
[short addition tonight]
I cannot find what book of his, what journal, rag, or paper it's from but here's a Robert Creeley poem that might provoke--this the one found written upside down in the back cover of Althusser's The Future Lasts Forever--a brilliant book, more later... Now Creeley:
"THE SENTENCE"
There is that in love
which, by the syntax of,
men find women and join
their bodies to their minds
--which wants so to acquire
a continuity, a place,
a demonstration that it must
be one's own sentence.
When the "mean find women and join / their bodies to their minds" I'm reminded of the cummings' poem, and "boys off with girls will go..." or something rather like it--the rest of the poem is about death, with the clincher being this continuing continuing.
Till tomorrow.
[what was already found here]
A mundane post, informational, short. Later today there are some poetic things I'd like to post: poems submitted here (ever and always Other Peoples Poetry), a poem I found scribbled into the back cover of an Althusser book, etc. For now though this.
(Does everyone listen to Erik Satie? I highly recommend it. I have him playing the background, a perfect blend of simplicity, experimentation, and some whimsy to keep it balanced out.)
Tomorrow is the Restaging I wrote about, but there are a couple of modifications. Tomorrow is going to be the CT scans, drinking my two quarts of barium smoothly--yum--waiting, then lying on the table that slides up and down through the very expensive tube. All of which is pretty simple. No pain, no worries. Just a short fast and a hospital visit where they will 'access' my port-o-cath (which I recently learned is the proper spelling--another spelling correction from an early post: Dr. Melfi of Sopranos fame is spelled like that, with an "e," but I was spelling it wrong for a while. Apologies to the good doctor.)
So the 17th is restaging, the technical side of it, but I just learned that on the 18th I meet with my dr. in the morning to discuss the radiography and whatever other data they have. That means the 18th will really be the telling day, if there is anything new to tell. This means an extra day, a reprieve, or if you like, another 24 hours of anxiety. If there's news to come, then, it will be after the 18th. I'll report back then.
Franky Scale: 8. Another day without chemo drugs, thank you Cheebus. Another day of simple pain management. A day to start reading this book I finally picked up called Everyone's Guide to Cancer Therapy. Basic, not full of cutting edge developments--which I am pursuing through other channels--but seems to have some good information. I did see at the bookstore the solution to all my problems yesterday, too; it's called something like The CURE to All Forms of Advanced Cancer. Isn't that great? The cure to everything, and to my surprise this little gem is just sitting there relatively unknown--and for sale in a legitimate bookstore--the cure to all of it, and yet so many people in the world still suffer. You should see some of the insane shit they put in these books. One key step in curing ALL cancers, as I learned from a quick skim, is to go immediately to your dentist and have every single tooth with any metal, porcelain, or other non-tooth material in it extracted. Rip 'em out. Who knew? If you're not willing to do this, you're not willing to be cured. Apparently. Makes me want to spit seeing shit like this.
I cannot find what book of his, what journal, rag, or paper it's from but here's a Robert Creeley poem that might provoke--this the one found written upside down in the back cover of Althusser's The Future Lasts Forever--a brilliant book, more later... Now Creeley:
"THE SENTENCE"
There is that in love
which, by the syntax of,
men find women and join
their bodies to their minds
--which wants so to acquire
a continuity, a place,
a demonstration that it must
be one's own sentence.
When the "mean find women and join / their bodies to their minds" I'm reminded of the cummings' poem, and "boys off with girls will go..." or something rather like it--the rest of the poem is about death, with the clincher being this continuing continuing.
Till tomorrow.
[what was already found here]
A mundane post, informational, short. Later today there are some poetic things I'd like to post: poems submitted here (ever and always Other Peoples Poetry), a poem I found scribbled into the back cover of an Althusser book, etc. For now though this.
(Does everyone listen to Erik Satie? I highly recommend it. I have him playing the background, a perfect blend of simplicity, experimentation, and some whimsy to keep it balanced out.)
Tomorrow is the Restaging I wrote about, but there are a couple of modifications. Tomorrow is going to be the CT scans, drinking my two quarts of barium smoothly--yum--waiting, then lying on the table that slides up and down through the very expensive tube. All of which is pretty simple. No pain, no worries. Just a short fast and a hospital visit where they will 'access' my port-o-cath (which I recently learned is the proper spelling--another spelling correction from an early post: Dr. Melfi of Sopranos fame is spelled like that, with an "e," but I was spelling it wrong for a while. Apologies to the good doctor.)
So the 17th is restaging, the technical side of it, but I just learned that on the 18th I meet with my dr. in the morning to discuss the radiography and whatever other data they have. That means the 18th will really be the telling day, if there is anything new to tell. This means an extra day, a reprieve, or if you like, another 24 hours of anxiety. If there's news to come, then, it will be after the 18th. I'll report back then.
Franky Scale: 8. Another day without chemo drugs, thank you Cheebus. Another day of simple pain management. A day to start reading this book I finally picked up called Everyone's Guide to Cancer Therapy. Basic, not full of cutting edge developments--which I am pursuing through other channels--but seems to have some good information. I did see at the bookstore the solution to all my problems yesterday, too; it's called something like The CURE to All Forms of Advanced Cancer. Isn't that great? The cure to everything, and to my surprise this little gem is just sitting there relatively unknown--and for sale in a legitimate bookstore--the cure to all of it, and yet so many people in the world still suffer. You should see some of the insane shit they put in these books. One key step in curing ALL cancers, as I learned from a quick skim, is to go immediately to your dentist and have every single tooth with any metal, porcelain, or other non-tooth material in it extracted. Rip 'em out. Who knew? If you're not willing to do this, you're not willing to be cured. Apparently. Makes me want to spit seeing shit like this.
Monday, May 15, 2006
5.15.06, Check the Warranty, We're Going to Restage
[new & improved daily post]
They say it’ll be hot today, but my apartment feels cold inside. I have a meeting with my chair after lunch, things to do in that neighborhood, post office, haircut, check on a cancer book, from this perspective, early morning still, bed seems good. Bed, good. I need extra rest right…….. OK, whatever. Temp up above the 70, 84 they said? That would be the hottest day of the year, and then me, I’m still fumbling for where a blanket is, part in sleep fog, part in Ambien haze. For about five more days, longer perhaps, I can keep on without taking any chemo drugs. Thank you jesus! (I think y’all know me well enough, but in case you don’t, this carpenter reference is a highly figurative allusion [one reader out there knows its origin], and a mildly disrespectful joke. I just want to make sure nobody’s Higher Powers get brought into this.) Still, food is tedious. Hunt, kill, skin, cook, eat--that's about how it feels. Motivation for many tasks distant. Don’t you ever think that, what is there to be motivated about at this point? The “short-term” in short-term projects having been completely redefined. And sillier irony still, cosmic irony I think it is: my job is now locked for the next four years. I can’t be fired, I’m “moving along nicely,” all is secure in M244. Hurray [Monty Python style, e.g., "And they were forced to eat his minstrels"]. Now what? Or, so what? Once again a single good shake of perspective and what I lost sleep over three months ago barely registers on my radar now.
Something noticed last week: No, Warranties are not “boring,” Princess. When I went to buy my new coffee grinder recently, I was comparing two grinders, different brands, similar prices, and I wanted to see the warrantee information, right? This is the logical next step, it’s smart shopping, it’s informed consumption. Style is somewhat important, function-wise they are all about the same, color's rather limited, but the consumer-report-ish side of things, that’s what guides this smart shopper. Until I realize--and have to chuckle--I no longer have to bother myself about warranties because any product warrantee I find is going to last longer than I do. Shit. If a salesperson starts to explain service protection plans, Apple Care, x-years and just-so-many miles to go, I no longer pay any attention. Back in the grocery store, I shake my head at this, and then grab the grinder in the color I like best and get the hell out.
Restaging: in two days a red letter day is coming. It gives me stress--in fact, a lot of stress--I’ll be honest with you. On Wednesday I could learn that the primary tumor has grown (I say “primary” because once the cancer was found to have spread I was blessed with about five more than what I started with, these in my liver); or, it’s possible that it has shrunk or is shrinking; or, it could be the same as it was last time, say, 6 weeks ago. This latter possibility, though better than the first, unnerves me too—what if there is nothing conclusive to learn on the 17th? It could mean hurry up and wait--the negatively capable come back to haunt me. The CA 19-9 numbers from last were good, that’s clear, the doctor even said as much; but there are further measurements to take, including another CA 19-9 check, I believe, two days from now. If anyone wonders, what exactly is the restaging? The medical types will do a series of radiographic tests, CT scans (a four-pass CT scan of lungs, abdomen, pelvis, very expensive), with the intent to re-measure the big tumor, the smaller tumors, etc. and determine how everything looks compared to six weeks ago when the radiography was done last. Why do this? It’s a progress report; to see whether the chemotherapy is working or not. I’ve been doing my best Protonix Man, now with cape and all, attacking my body with toxins and killing all rapidly multiplying cells in it for about two months, so there better be a damn good reason. The question underlying the whole restaging is precisely what freaks me out--there is a good chance I’ll “be given” an adjusted prognosis. What’ll it be? A few more months, the happy news. “Happy” news. Or, it’s not working, start smoking again, enjoy yourself, whatever you want.
There were a few paragraphs more here but I’m editing (for today at least), in part for length, in part because I’m ambivalent about how candid to be. Take the Saturday post, for example, not dark to my mind, just looking at the whole scene from a different vantage point: some tell me on the sly how they appreciate it, some send me emails of concern, one or two phone up, some just plain worry more. Each reaction and mood, the pensive, the defiant, the distracted. It’s all real, regardless of how we respond. And there’s nothing wrong with stopping now and then to look it in the face. Not in my book. So. Till next time.
[first distracted a.m. scribbles]
Supposed to be "hot" in Seattle today, craziness. My pro-forma Annual Review takes place at work. Two days left until "the cancer" is restaged--until we find out where the hell I am and how long I'm likely to stay around. (Can you believe the insane nature of this game? In some cases people have a test done and wait to hear whether it's lactose intolerance or wheat germ allergy, day after tomorrow is supposed to give some indication of whether I should clean out my office now or wait a while longer. --Not to be morbid intentionally, there's just no avoiding the bizarre extremity of it all......)
So moving forward on the lightness of the day, I feel pretty good, another day with no chemo drugs is so welcome. I'll say 7/8 on the FScale, though the day is young. Yesterday I learned, re-learned, a worthwhile lesson by not making myself eat until around 5 or so p.m.--very silly thing to do. After eating, hydrating, etc. by about 8ish I was back to some degree, but my body cannot act so tough as to just ignore the caloric intake altogether these days. Shit. Frankly, food is basically tedious, thinking it, finding, preparing it / buying it, then sticking it in my mouth--sometimes it's easier to "forget." Like I said, though, I realized again it's not smart. That would put yesterday at an "8" ideally, then a "6" practically after the body energy debacle.
Later today I'll post something more substantial, about good and evil, the concept of product warranty, and some details on the next big medical move in my future--restaging the cancer on the 17th, two days. It's gonna be great, don't miss it.
They say it’ll be hot today, but my apartment feels cold inside. I have a meeting with my chair after lunch, things to do in that neighborhood, post office, haircut, check on a cancer book, from this perspective, early morning still, bed seems good. Bed, good. I need extra rest right…….. OK, whatever. Temp up above the 70, 84 they said? That would be the hottest day of the year, and then me, I’m still fumbling for where a blanket is, part in sleep fog, part in Ambien haze. For about five more days, longer perhaps, I can keep on without taking any chemo drugs. Thank you jesus! (I think y’all know me well enough, but in case you don’t, this carpenter reference is a highly figurative allusion [one reader out there knows its origin], and a mildly disrespectful joke. I just want to make sure nobody’s Higher Powers get brought into this.) Still, food is tedious. Hunt, kill, skin, cook, eat--that's about how it feels. Motivation for many tasks distant. Don’t you ever think that, what is there to be motivated about at this point? The “short-term” in short-term projects having been completely redefined. And sillier irony still, cosmic irony I think it is: my job is now locked for the next four years. I can’t be fired, I’m “moving along nicely,” all is secure in M244. Hurray [Monty Python style, e.g., "And they were forced to eat his minstrels"]. Now what? Or, so what? Once again a single good shake of perspective and what I lost sleep over three months ago barely registers on my radar now.
Something noticed last week: No, Warranties are not “boring,” Princess. When I went to buy my new coffee grinder recently, I was comparing two grinders, different brands, similar prices, and I wanted to see the warrantee information, right? This is the logical next step, it’s smart shopping, it’s informed consumption. Style is somewhat important, function-wise they are all about the same, color's rather limited, but the consumer-report-ish side of things, that’s what guides this smart shopper. Until I realize--and have to chuckle--I no longer have to bother myself about warranties because any product warrantee I find is going to last longer than I do. Shit. If a salesperson starts to explain service protection plans, Apple Care, x-years and just-so-many miles to go, I no longer pay any attention. Back in the grocery store, I shake my head at this, and then grab the grinder in the color I like best and get the hell out.
Restaging: in two days a red letter day is coming. It gives me stress--in fact, a lot of stress--I’ll be honest with you. On Wednesday I could learn that the primary tumor has grown (I say “primary” because once the cancer was found to have spread I was blessed with about five more than what I started with, these in my liver); or, it’s possible that it has shrunk or is shrinking; or, it could be the same as it was last time, say, 6 weeks ago. This latter possibility, though better than the first, unnerves me too—what if there is nothing conclusive to learn on the 17th? It could mean hurry up and wait--the negatively capable come back to haunt me. The CA 19-9 numbers from last were good, that’s clear, the doctor even said as much; but there are further measurements to take, including another CA 19-9 check, I believe, two days from now. If anyone wonders, what exactly is the restaging? The medical types will do a series of radiographic tests, CT scans (a four-pass CT scan of lungs, abdomen, pelvis, very expensive), with the intent to re-measure the big tumor, the smaller tumors, etc. and determine how everything looks compared to six weeks ago when the radiography was done last. Why do this? It’s a progress report; to see whether the chemotherapy is working or not. I’ve been doing my best Protonix Man, now with cape and all, attacking my body with toxins and killing all rapidly multiplying cells in it for about two months, so there better be a damn good reason. The question underlying the whole restaging is precisely what freaks me out--there is a good chance I’ll “be given” an adjusted prognosis. What’ll it be? A few more months, the happy news. “Happy” news. Or, it’s not working, start smoking again, enjoy yourself, whatever you want.
There were a few paragraphs more here but I’m editing (for today at least), in part for length, in part because I’m ambivalent about how candid to be. Take the Saturday post, for example, not dark to my mind, just looking at the whole scene from a different vantage point: some tell me on the sly how they appreciate it, some send me emails of concern, one or two phone up, some just plain worry more. Each reaction and mood, the pensive, the defiant, the distracted. It’s all real, regardless of how we respond. And there’s nothing wrong with stopping now and then to look it in the face. Not in my book. So. Till next time.
[first distracted a.m. scribbles]
Supposed to be "hot" in Seattle today, craziness. My pro-forma Annual Review takes place at work. Two days left until "the cancer" is restaged--until we find out where the hell I am and how long I'm likely to stay around. (Can you believe the insane nature of this game? In some cases people have a test done and wait to hear whether it's lactose intolerance or wheat germ allergy, day after tomorrow is supposed to give some indication of whether I should clean out my office now or wait a while longer. --Not to be morbid intentionally, there's just no avoiding the bizarre extremity of it all......)
So moving forward on the lightness of the day, I feel pretty good, another day with no chemo drugs is so welcome. I'll say 7/8 on the FScale, though the day is young. Yesterday I learned, re-learned, a worthwhile lesson by not making myself eat until around 5 or so p.m.--very silly thing to do. After eating, hydrating, etc. by about 8ish I was back to some degree, but my body cannot act so tough as to just ignore the caloric intake altogether these days. Shit. Frankly, food is basically tedious, thinking it, finding, preparing it / buying it, then sticking it in my mouth--sometimes it's easier to "forget." Like I said, though, I realized again it's not smart. That would put yesterday at an "8" ideally, then a "6" practically after the body energy debacle.
Later today I'll post something more substantial, about good and evil, the concept of product warranty, and some details on the next big medical move in my future--restaging the cancer on the 17th, two days. It's gonna be great, don't miss it.
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