The poem providing the title to this blog, but with no analysis, why's or wherefore's at this point....
“DO NOT GO GENTLE INTO THAT GOOD NIGHT”
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
(1952)
And this final observation wasn't intended to be morbid but I just learned, pulling a quick copy of the poem off the web, that Dylan Thomas died at the age of 39, something I did not know when I decided the refrain from his poem would have to be my watchphrase now, another piece of uncanniness, sick luck, some strange confluence. It vibes me out.
Friday, April 21, 2006
4.21.06, The Daily Numbers Game
Today's a 5.
My friend Frank suggested a daily number as an indication of how I'm doing each day, perhaps just tacked onto a longer post as some indication that cuts through all the trivia or verbal obfuscation or occcasional sarcasasm. Today, let's say 5, on a scale from 1 as worst to 10 as best. (We have to be careful not to confuse this with the pain scale, a very important indicator, wihch is reversed with 10 meaning something "you can't go" or "you want to die" and 1 meaning "no pain." Nothing tongue-in-cheek about that, the pain scale, since it's become a daily and necessary part of how to cope with this.)
Two days ago, like day-one post-chemo of the last week seemed so good. So on the Franky scale I'm going to give Wednesday a basically really good, a 9 in comparison with all the recent days. Now yesterday was middling from around a 4 or 5 in the morning, up a couple of points later in the day, then back to a 4 in the evening. During my run, however, I didn’t feel much if any pain. These numbers. Part of me feels like I’m the Daily Game you can play here in WA state -- "The Daily Game is a fun way to put a little extra money in your pocket every day, because you can win anything from $40 to $500 for a $1 play, or play for as little as 50¢." The lottery people wouldn't come chase me down would they? You pick any three or two numbers and if you get two of them in order you win x amount, all three you win y amount, depending on how many others guess correctly.
So Wednesday a 9, Thrusday a 6 with a couple of dips; the day before, chemo day, that’s harsher and rates only about a 3 purely for fatigue.
From now on we'll have the Franky Scale and the Pain Scale, though there's very little reason to introduce the latter daily.
My friend Frank suggested a daily number as an indication of how I'm doing each day, perhaps just tacked onto a longer post as some indication that cuts through all the trivia or verbal obfuscation or occcasional sarcasasm. Today, let's say 5, on a scale from 1 as worst to 10 as best. (We have to be careful not to confuse this with the pain scale, a very important indicator, wihch is reversed with 10 meaning something "you can't go" or "you want to die" and 1 meaning "no pain." Nothing tongue-in-cheek about that, the pain scale, since it's become a daily and necessary part of how to cope with this.)
Two days ago, like day-one post-chemo of the last week seemed so good. So on the Franky scale I'm going to give Wednesday a basically really good, a 9 in comparison with all the recent days. Now yesterday was middling from around a 4 or 5 in the morning, up a couple of points later in the day, then back to a 4 in the evening. During my run, however, I didn’t feel much if any pain. These numbers. Part of me feels like I’m the Daily Game you can play here in WA state -- "The Daily Game is a fun way to put a little extra money in your pocket every day, because you can win anything from $40 to $500 for a $1 play, or play for as little as 50¢." The lottery people wouldn't come chase me down would they? You pick any three or two numbers and if you get two of them in order you win x amount, all three you win y amount, depending on how many others guess correctly.
So Wednesday a 9, Thrusday a 6 with a couple of dips; the day before, chemo day, that’s harsher and rates only about a 3 purely for fatigue.
From now on we'll have the Franky Scale and the Pain Scale, though there's very little reason to introduce the latter daily.
Thursday, April 20, 2006
4.20.06, Backstory: Love & Stools, Before IV Chemo #2
Backstory: Love & Stools, Before IV Chemo #2
(letter to family 18 April 2006)
Hi Everybody,
First to S., sorry I didn’t call today, I got sidetracked with my friend T.J. who came up from San Diego for the weekend and was leaving this afternoon. I hope I didn’t make you worry since every thing is fine here, rather good today, and I hope I didn't make you suffer too much boredom with all the joyful high school students on the bus/es.
Tomorrow afternoon is my second chemo trip, second time for the IV portion of things in which I get gemcitabine and taxotere — the “G” and the “T” portions of the GTX regimen, or regime as who was saying? They do my blood work at noon, I start infusions at 1 p.m., then I just lie around until 3:30 or so, I think. The timing might be different from last week, apparently the first time you take the infusion it often takes longer. A number of secondary drugs (e.g., histamine blockers) are given during the infusion too, but I don’t have the literature on all this since they gave it to mom last week. It’s there in salt lake somewhere! if someone would be so kind as to collect whatever she took with her and, feel free to make copies and keep the copies, but I’d like to get all the original paperwork and lit back if possible. If it’s only generic drug specs then the originals are inconsequential, but. And in case people are bored or curious, I’m going to include three attachments to this email of medical articles (one’s only an abstract, I’m working on getting the full text) on the drug combos, therapies, and their comparative effectiveness. They should be heartening since the GTX regime that I’m doing stands up well, appears to do better than other options studied. —These are thanks to Kim whose ability to research and find these things is infinitely better than mine. [See titles below.*]
[Secondary drugs listed below.**]
Also in terms of helpful literature, mom took with her a folder, just over an inch thick, with a clear plastic cover from the SCCA [Seattle Cancer Care Alliance] called the “Patient Care Manual” which I thought might be of some help or again just satisfy people’s curiosity. I’d meant to send a photocopy of mine but mom was able to get one from the hospital when she was here. I’d recommend someone getting that from mom and copying it too. she might be hoarding all this info.
I expect tomorrow will go smoothly, and since it doesn’t include any surgery this time it should be much less demanding on me physically. even still, I might be either out of it or just too tired to talk on the phone or email afterward so don’t be surprised if you don’t hear anything from me. If there are any hitches I'll have my friend G., who’s going with me, give a call.
Yesterday was easter, as you may know, and the Large Fuzzy Bunny brought me a new TV (actually the first I’ve ever owned!) and a DVD player, via my friends from my writing group and my same hiring “class” at the university. Isn’t that thoughtful, actually. So I’ll have to watch more DVDs now, on a screen larger than my laptop. Also I got out to run for the first time since the surgery Tuesday, and then the lovely impacted bowels and marathon evacuation I went through. I kept it slow and tried not to test my Wound/sutures — seeing a jogger with blood spurting out of a tube that dangles from the aorta might be disconcerting, so out of concern for others I tried to be polite. (The porta-cath is actually totally subcutaneous so that would or should never happen, although it does press the skin out over the port part of it, so it looks like I have a strange lump, but you can seen the catheter part too, the tubing that runs up to my neck and then dips back in toward my heart and it’s probably pretty apparent if I’m running around shirtless.)
OK, everybody take their pain pills and don’t forget your stool softeners! Remember that it’s easier to manage your pain by controlling it and harder to stop it once it starts in earnest. and constipation, forget about it!
Love and stools,
Mr. Jones
P.S., I have a break in IVs until the first of May so I’m thinking of coming out to Zion pretty soon, just want to see how tomorrow goes first.
[And, again, someone please pass all this on to mom]
[*The articles referred to are: “Decrease of CA 19-9 during chemotherapy with gemcitabine predicts survival time in patients with advanced pancreatic cancer,” U. Halm, T. Schumann, et al., _British Journal of Cancer_ 82.5 (2000): 1013-1016; “Biweekly Low-Dose Sequential Gemcitabine, 5-Fluorouracil, Leucovorin, and Cisplatin (GFP): A Highly Active Novel Therapy for Metastatic Adenocarcinoma of the Exocrine Pancreas,” Miguel Araneo, M.D., Howard W. Bruckner, M.D., et al., _Cancer Investigation_ 21.4 (2003): 489-496; “Gemcitabine versus cisplatin, epirubicin, fluorouracil, and gemcitabine in advanced pancreatic cancer: a randomized controlled multicentre phase III trial,” Michele Reni, Stefano Cordio, et al., _Lancet Oncol_ 6 (2005): 369-276.]
[**Notes for the anal, Secondary drugs: Gemcitabine and Taxotere are the primary drugs, but to cope with side effects, potential and unavoidable they load you up with other drugs for about 30 or 40 minutes before they begin the full-service oil change. They are Benadryl 50 mg IV; Dexamethasone 10 mg IV; Ranitidine Hydrochloride 50 mg IV; Ondansetron Hydrochloride 8 mg IV—it seems these are to block histamines, induce appetite, protect the stomach / antiulcer, prevent nausea / antiemetic respectively. But what do I know? I’m a doctor of philosophy, not pharmacology.]
(letter to family 18 April 2006)
Hi Everybody,
First to S., sorry I didn’t call today, I got sidetracked with my friend T.J. who came up from San Diego for the weekend and was leaving this afternoon. I hope I didn’t make you worry since every thing is fine here, rather good today, and I hope I didn't make you suffer too much boredom with all the joyful high school students on the bus/es.
Tomorrow afternoon is my second chemo trip, second time for the IV portion of things in which I get gemcitabine and taxotere — the “G” and the “T” portions of the GTX regimen, or regime as who was saying? They do my blood work at noon, I start infusions at 1 p.m., then I just lie around until 3:30 or so, I think. The timing might be different from last week, apparently the first time you take the infusion it often takes longer. A number of secondary drugs (e.g., histamine blockers) are given during the infusion too, but I don’t have the literature on all this since they gave it to mom last week. It’s there in salt lake somewhere! if someone would be so kind as to collect whatever she took with her and, feel free to make copies and keep the copies, but I’d like to get all the original paperwork and lit back if possible. If it’s only generic drug specs then the originals are inconsequential, but. And in case people are bored or curious, I’m going to include three attachments to this email of medical articles (one’s only an abstract, I’m working on getting the full text) on the drug combos, therapies, and their comparative effectiveness. They should be heartening since the GTX regime that I’m doing stands up well, appears to do better than other options studied. —These are thanks to Kim whose ability to research and find these things is infinitely better than mine. [See titles below.*]
[Secondary drugs listed below.**]
Also in terms of helpful literature, mom took with her a folder, just over an inch thick, with a clear plastic cover from the SCCA [Seattle Cancer Care Alliance] called the “Patient Care Manual” which I thought might be of some help or again just satisfy people’s curiosity. I’d meant to send a photocopy of mine but mom was able to get one from the hospital when she was here. I’d recommend someone getting that from mom and copying it too. she might be hoarding all this info.
I expect tomorrow will go smoothly, and since it doesn’t include any surgery this time it should be much less demanding on me physically. even still, I might be either out of it or just too tired to talk on the phone or email afterward so don’t be surprised if you don’t hear anything from me. If there are any hitches I'll have my friend G., who’s going with me, give a call.
Yesterday was easter, as you may know, and the Large Fuzzy Bunny brought me a new TV (actually the first I’ve ever owned!) and a DVD player, via my friends from my writing group and my same hiring “class” at the university. Isn’t that thoughtful, actually. So I’ll have to watch more DVDs now, on a screen larger than my laptop. Also I got out to run for the first time since the surgery Tuesday, and then the lovely impacted bowels and marathon evacuation I went through. I kept it slow and tried not to test my Wound/sutures — seeing a jogger with blood spurting out of a tube that dangles from the aorta might be disconcerting, so out of concern for others I tried to be polite. (The porta-cath is actually totally subcutaneous so that would or should never happen, although it does press the skin out over the port part of it, so it looks like I have a strange lump, but you can seen the catheter part too, the tubing that runs up to my neck and then dips back in toward my heart and it’s probably pretty apparent if I’m running around shirtless.)
OK, everybody take their pain pills and don’t forget your stool softeners! Remember that it’s easier to manage your pain by controlling it and harder to stop it once it starts in earnest. and constipation, forget about it!
Love and stools,
Mr. Jones
P.S., I have a break in IVs until the first of May so I’m thinking of coming out to Zion pretty soon, just want to see how tomorrow goes first.
[And, again, someone please pass all this on to mom]
[*The articles referred to are: “Decrease of CA 19-9 during chemotherapy with gemcitabine predicts survival time in patients with advanced pancreatic cancer,” U. Halm, T. Schumann, et al., _British Journal of Cancer_ 82.5 (2000): 1013-1016; “Biweekly Low-Dose Sequential Gemcitabine, 5-Fluorouracil, Leucovorin, and Cisplatin (GFP): A Highly Active Novel Therapy for Metastatic Adenocarcinoma of the Exocrine Pancreas,” Miguel Araneo, M.D., Howard W. Bruckner, M.D., et al., _Cancer Investigation_ 21.4 (2003): 489-496; “Gemcitabine versus cisplatin, epirubicin, fluorouracil, and gemcitabine in advanced pancreatic cancer: a randomized controlled multicentre phase III trial,” Michele Reni, Stefano Cordio, et al., _Lancet Oncol_ 6 (2005): 369-276.]
[**Notes for the anal, Secondary drugs: Gemcitabine and Taxotere are the primary drugs, but to cope with side effects, potential and unavoidable they load you up with other drugs for about 30 or 40 minutes before they begin the full-service oil change. They are Benadryl 50 mg IV; Dexamethasone 10 mg IV; Ranitidine Hydrochloride 50 mg IV; Ondansetron Hydrochloride 8 mg IV—it seems these are to block histamines, induce appetite, protect the stomach / antiulcer, prevent nausea / antiemetic respectively. But what do I know? I’m a doctor of philosophy, not pharmacology.]
Wednesday, April 19, 2006
4.19.06, Introduction: Do Not Go Gentle
Imagine you're moving through your life, beginning your career, enjoying some success and good health, and like anyone else you're making plans. You're 38--in many senses it's the prime of your life. In any event, you're young still. You liked reading and writing so you went to graduate school, you traveled a bit, in 2003 you started teaching poetry in a university in Seattle. You get halfway through your second year, gearing up to finish that "first book," when your doctor calls to follow up on some tests about stomach pains you've had: "You've got cancer of the pancreas."
Upon first hearing, frankly, it doesn't hit you as hard as it might because what the hell do you know about it. But after about two more weeks of research, reading, appointments, surgical consults, and more tests, your understanding increases, and what's heavier still, your diagnosis gets worse. It's terminal, by all odds you have less than a year to live. "Terminal" ... "38"... "pancreatic cancer"...?
That's the story my most recent month. Now what about career, enjoying daily life, relationships, plans? I have very few answers at this point, lots of questions though. Faced with death every day now, should I say death on the installment plan as one French author has it?, I realize all questions of death are simultaneously questions of life--of life till then, of those who will survive you. I don't go in for metaphysics or grand mythologies so "life after death," for me, exists only in the anticipation of some, the memories of some others. What I'm trying to do here is simple, just tell some of this crazed story as it unfolds. I hope it helps family, friends, maybe someone else who finds herself or himself in the same spot--but caveat lector, because I will to do all I can to be direct and honest. This may not be for everyone. Any offense given is unintentional.
It deserves much more attention, will get it later, but the line from Dylan Thomas's poem keeps coming back to me, as a mixture of sadness, pain, shock, grief, befuddlement, and sometimes anger: "Do not go gentle into that good night."
Upon first hearing, frankly, it doesn't hit you as hard as it might because what the hell do you know about it. But after about two more weeks of research, reading, appointments, surgical consults, and more tests, your understanding increases, and what's heavier still, your diagnosis gets worse. It's terminal, by all odds you have less than a year to live. "Terminal" ... "38"... "pancreatic cancer"...?
That's the story my most recent month. Now what about career, enjoying daily life, relationships, plans? I have very few answers at this point, lots of questions though. Faced with death every day now, should I say death on the installment plan as one French author has it?, I realize all questions of death are simultaneously questions of life--of life till then, of those who will survive you. I don't go in for metaphysics or grand mythologies so "life after death," for me, exists only in the anticipation of some, the memories of some others. What I'm trying to do here is simple, just tell some of this crazed story as it unfolds. I hope it helps family, friends, maybe someone else who finds herself or himself in the same spot--but caveat lector, because I will to do all I can to be direct and honest. This may not be for everyone. Any offense given is unintentional.
It deserves much more attention, will get it later, but the line from Dylan Thomas's poem keeps coming back to me, as a mixture of sadness, pain, shock, grief, befuddlement, and sometimes anger: "Do not go gentle into that good night."
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