So Protonix Man has returned, meaning today chemo begins once more, and I woke up to take my Protonix ultastomachprotector pill. Then onto the more rigid schedule of meals, Xeloda, B-6, and so on. I am still waiting for my goddam cape with a large "P" on it.
Most noteworthy of all: I slept through the entire night last night! The first time I've done that in over a month, first time since the diagnosis. Life never ceases to amaze.
[midday Franky Scale report: 8. it's almost like an eigth day with no chemo drugs, but i did have to start them up again this morning, so back into chemo space for me. my doctor told me at the outset "We'll give you as much chemo as we think you can handle, you'll feel some side effects, hopefully adjust a bit, then we'll give you some time off. You'll just start to be feeling better, then we'll start chemo again." it's such a thoughtful way to move forward. --he is a really good guy though, despite my sarcasm-coping mechanism.]
Saturday, April 29, 2006
Friday, April 28, 2006
4.28.06, Coming in Three's
[The confused are admonished to reread and pay attn to editions in brackets, this post is not nearly as risque as one might think. -Protonix Man]
Today is the last day of no chemo-drugs, or rather the week-long break from the drugs. I have noticed feeling better, stronger, faster, as the no-drug days progress, which seems about right--start to feel better and then we change your oil again, is roughly what my doctor said (the good doctor, not the master of legerdemain). More on this in a moment.
Three Comments: Anything that smacks of sexuality or even sexual innuendo seems to go over big with the kids. My friends included. After my last post I received at least three emails or comments--"He said 'wood'"-- once they see the word "wood" they just can't resist. One or two comments you can read here, the other best comments was sent privately, which was probably wisest: it related to medical experimentation, tingly-ness, visual distraction, rhythmic skin stimulation of areas of the body not affected by the pain--all suggestions found in the "Pain Control" book, I swear [Said friend lives in NY]. One other person suggested a wood scale be added to the blog [Said friend lives in So Cal.]. My deepest apologies but since we already have the Franky Scale and the Pain Scale & I'm afraid a Wood Scale would just confuse the doctors. (BTW#1, this same nameless friend, who should have a superhero name if I could come up with one--ideas?--, is also a professor type who has been known to teach in front of 150 students with, how shall we say, aesthetically evocative pants on, and though such would usually be accompanied by a thong, she has been known to forget said item. Silly, absent-minded professors. ;-) don't hate me, big kiss. ) (BTW#2/overall/furthermore, I do have fucking fabulous friends--I'm not usually the overly expressive type but, truly, there's been a lot of love and people have done so much for me. A big thank you, you're all huge. It's true, I can't even tell you.[Such said friends, living all over, have just been good.])
Three Sisters: I have three of these too. I promised to say something nice about Sheri, so Sheri something nice! The youngest has a birthday today, so happy birthday! And the final sister is at the salad bar, or maybe it's work, I get these confused, work first then salad bar (if this latter comment seems juvenile to anyone, you don't know this sister. Gillian's met her.). Hi.
Third topic: No third topic per se. But healthwise, this week has been noteworthy for more than just how much wind I suck running every day at 4000 feet above sea level. The anti-cancer drugs, I'm starting to learn, really do take a toll in terms of energy, motivation, perhaps even mental acuity in the sense that I simply seem to think like a tired person more with the drugs. Yesterday I spent a couple of hours in the Salt Lake Roasting Co, the cafe where a good chunk of my dissertation was written and I used to get free coffee for reasons I'll explain in some other innuendo filled story [3 or 4 year-old story, btw], and for those two hours I felt clear, on my game, able to work (some writing/editing), good all around. One drawback to such moments is how they are accompanied by a certain nearby fragility, a kind of pre-longing that seeps in when knowledge slips in through the concentration barrier. Somewhere in my head there is an egg timer, quiet but steady. Still worth it however. The rest of the day was spent with a friend from very way back, great time together, but trying to stay "on" for five more hours was too much [Said friends: Kenyon, Randy, and Kenyon Jr.]. All told the day was about a 6, Franky.
In terms of energy and what I'll call physical "normalcy" for lack of a better term, the past few days have seen improvements. Even running at this altitude I feel like my body will do more, like I could push it harder if that were my goal. Then in terms of work ability, concentration, and managing general side-effects, this week has also taught me a lot about how to work, what is too much, when to kick off, etc. At this point, too, the books and alternative advice has started to come in: everything from the power of positive thinking, to natural healing, to herbal supplements (multi-level marketing comes free of charge), to other hospitals, clinical trials, and so on. For "motivational" reading I might just stick with Kafka, Burroughs, and Beckett (the past two weeks anyway), but all suggestions are welcome. Two days till Seattle, two days till two cats, thanks again G.
More anon.
Today is the last day of no chemo-drugs, or rather the week-long break from the drugs. I have noticed feeling better, stronger, faster, as the no-drug days progress, which seems about right--start to feel better and then we change your oil again, is roughly what my doctor said (the good doctor, not the master of legerdemain). More on this in a moment.
Three Comments: Anything that smacks of sexuality or even sexual innuendo seems to go over big with the kids. My friends included. After my last post I received at least three emails or comments--"He said 'wood'"-- once they see the word "wood" they just can't resist. One or two comments you can read here, the other best comments was sent privately, which was probably wisest: it related to medical experimentation, tingly-ness, visual distraction, rhythmic skin stimulation of areas of the body not affected by the pain--all suggestions found in the "Pain Control" book, I swear [Said friend lives in NY]. One other person suggested a wood scale be added to the blog [Said friend lives in So Cal.]. My deepest apologies but since we already have the Franky Scale and the Pain Scale & I'm afraid a Wood Scale would just confuse the doctors. (BTW#1, this same nameless friend, who should have a superhero name if I could come up with one--ideas?--, is also a professor type who has been known to teach in front of 150 students with, how shall we say, aesthetically evocative pants on, and though such would usually be accompanied by a thong, she has been known to forget said item. Silly, absent-minded professors. ;-) don't hate me, big kiss. ) (BTW#2/overall/furthermore, I do have fucking fabulous friends--I'm not usually the overly expressive type but, truly, there's been a lot of love and people have done so much for me. A big thank you, you're all huge. It's true, I can't even tell you.[Such said friends, living all over, have just been good.])
Three Sisters: I have three of these too. I promised to say something nice about Sheri, so Sheri something nice! The youngest has a birthday today, so happy birthday! And the final sister is at the salad bar, or maybe it's work, I get these confused, work first then salad bar (if this latter comment seems juvenile to anyone, you don't know this sister. Gillian's met her.). Hi.
Third topic: No third topic per se. But healthwise, this week has been noteworthy for more than just how much wind I suck running every day at 4000 feet above sea level. The anti-cancer drugs, I'm starting to learn, really do take a toll in terms of energy, motivation, perhaps even mental acuity in the sense that I simply seem to think like a tired person more with the drugs. Yesterday I spent a couple of hours in the Salt Lake Roasting Co, the cafe where a good chunk of my dissertation was written and I used to get free coffee for reasons I'll explain in some other innuendo filled story [3 or 4 year-old story, btw], and for those two hours I felt clear, on my game, able to work (some writing/editing), good all around. One drawback to such moments is how they are accompanied by a certain nearby fragility, a kind of pre-longing that seeps in when knowledge slips in through the concentration barrier. Somewhere in my head there is an egg timer, quiet but steady. Still worth it however. The rest of the day was spent with a friend from very way back, great time together, but trying to stay "on" for five more hours was too much [Said friends: Kenyon, Randy, and Kenyon Jr.]. All told the day was about a 6, Franky.
In terms of energy and what I'll call physical "normalcy" for lack of a better term, the past few days have seen improvements. Even running at this altitude I feel like my body will do more, like I could push it harder if that were my goal. Then in terms of work ability, concentration, and managing general side-effects, this week has also taught me a lot about how to work, what is too much, when to kick off, etc. At this point, too, the books and alternative advice has started to come in: everything from the power of positive thinking, to natural healing, to herbal supplements (multi-level marketing comes free of charge), to other hospitals, clinical trials, and so on. For "motivational" reading I might just stick with Kafka, Burroughs, and Beckett (the past two weeks anyway), but all suggestions are welcome. Two days till Seattle, two days till two cats, thanks again G.
More anon.
Wednesday, April 26, 2006
4.26.06, Side Effects: Hair Loss, Weight, Wood
If today had a number I'd go 8. Not bad. To a large extent I do think the hour-to-hour of the experience is based on pain management. A task that is both physically and psychologically unfamiliar. As I come to grips with the reality of it, the need for it, and the approaches to it, it gets better. The Franky Scale ups.
To update you on the chemo process, or rather my whereabouts therein, I'm currently in the first rest week (did I already write on this....? short-term memory loss as side effect....?). After two weeks of pill and IV chemo, I rest until Saturday; then I start up with the pills once more. Next week Tuesday, the 2nd, I get my first weekly infusion of the second mini-round of chemo (three three-week rounds making one complete cycle). During this week of no chemo drugs I do seem to feel better physically, less fatigued in general, some appetite now and then, and I think less by way of night sweats/chills too.
Side effects for me seem to have been pretty mild so far. No hair loss--well, unless you count my chest hair but I lost that during presurgical foreplay with Dr. Hands. Still hasn't grown back in all the way. Otherwise, same as before, all the same places. My weight also seems pretty constant, though I've been working at it diligently since the Flood. In addition to either Met-rx (sp?) and Balance and Trader Joe's protein/nutrition powder drinks, I've been trying Boost a couple or few times a day also. Appetite, or rather lack thereof, and lack of ability to taste or enjoy food have been pretty constant effects. Some dryness of hands, but no hand-food disease-level discomfort. And, knock on wood, no mouth sores of any type. As for wood--is this too personal?--I don't think I suffered much in that dept, nor do I hope anyone else suffered much in that dept. However, during this week of non-chemo days I, or, there is, how shall we say, a certain tingle in the air. Or let's say I feel somewhat more disposed to register the natural effects of Spring. What was it Eliot said about April? (Read his poetry and it's clear, he for sure had problems with wood, but that's more Prufrock than Wasteland.)
To update you on the chemo process, or rather my whereabouts therein, I'm currently in the first rest week (did I already write on this....? short-term memory loss as side effect....?). After two weeks of pill and IV chemo, I rest until Saturday; then I start up with the pills once more. Next week Tuesday, the 2nd, I get my first weekly infusion of the second mini-round of chemo (three three-week rounds making one complete cycle). During this week of no chemo drugs I do seem to feel better physically, less fatigued in general, some appetite now and then, and I think less by way of night sweats/chills too.
Side effects for me seem to have been pretty mild so far. No hair loss--well, unless you count my chest hair but I lost that during presurgical foreplay with Dr. Hands. Still hasn't grown back in all the way. Otherwise, same as before, all the same places. My weight also seems pretty constant, though I've been working at it diligently since the Flood. In addition to either Met-rx (sp?) and Balance and Trader Joe's protein/nutrition powder drinks, I've been trying Boost a couple or few times a day also. Appetite, or rather lack thereof, and lack of ability to taste or enjoy food have been pretty constant effects. Some dryness of hands, but no hand-food disease-level discomfort. And, knock on wood, no mouth sores of any type. As for wood--is this too personal?--I don't think I suffered much in that dept, nor do I hope anyone else suffered much in that dept. However, during this week of non-chemo days I, or, there is, how shall we say, a certain tingle in the air. Or let's say I feel somewhat more disposed to register the natural effects of Spring. What was it Eliot said about April? (Read his poetry and it's clear, he for sure had problems with wood, but that's more Prufrock than Wasteland.)
Tuesday, April 25, 2006
4.25.06, Articles for the Anal: On GTX
At least one person commented recently that they are proudly anal and like to have the references for articles I mention here, so this is a follow up. An article on the effects of the multi-drug GTX treatment I'm undergoing was mentioned before, but I only had access to the abstract. Now my helpers in the bioengineering community have hooked me up and I have th full text article--I can't post a link to it, but if you contact me privately I can make it worth your while. For now the citation is here:
"Advances in the Genetic Screening, Work-Up and Treatment of Pancreatic Cancer," Harold Frucht, MD, Peter D. Stevens, MD, David R. Fogelman, MD, et al. _Current Treatment Options in Gastroenterology_ 7 (2004): 343-354. Again, let me know if you're insomniac and/or curious.
Otherwise, a chemo update: I'm now in my first non-treatment week, or "rest" week. After 14 days of taking the Xeloda pills, big fat ones 2x a day; and then getting about 3.5 hours of IV Gemcitabine, Taxotere, and numerous secondary drugs, on both of the last Tuesdays, now I'm in the body-recovery space. How does it feel? Who knows really. I'd give myself a 6 or 7 today, pretty normal for the uneventful days; just typical pain mgt, some occasional sudden fatigue, working at hydrating and eating. Both of the latter tasks are much more joblike that I would like, but you don't get to choose. It suddenly feels strange to not be taking the 2x/daily drugs now, but I'll take it. I'm also not aware of any changes in how I feel. All my hair has stayed on my head--and the chest hair is still growing back after Dr. Feelgood gave me the full-service massage. BTW, my mother, since I fianlly asked her, says she did realize what was happening while I was being groped, halfnaked on the gurney..... Honestly I'm not sure it's just my mom playing along like she does when someone in the family makes an obscene joke--yep, even the Mormons do it--and my mom doesn't get it, but she'll laugh along anyway, just to be a good sport. Let's see, the last such joke where this happened had something to do with my mom asking if I might go into the kitchen and "toss some salad" before dinner because I'm so good at it, so I ask "Who told you that?" and she responds, "You've always been good at tossing salad." Then me, well, I was nonplussed... Mothers are not supposed to know that kind of thing; and in reality she doesn't. But did she realize that Dr. F was enjoying himself so thoroughly? And I'm still wondering what kind of tip I owe him for that. Do I pay the insurance company? Do I pay him? Should I break a twenty for singles?
"Advances in the Genetic Screening, Work-Up and Treatment of Pancreatic Cancer," Harold Frucht, MD, Peter D. Stevens, MD, David R. Fogelman, MD, et al. _Current Treatment Options in Gastroenterology_ 7 (2004): 343-354. Again, let me know if you're insomniac and/or curious.
Otherwise, a chemo update: I'm now in my first non-treatment week, or "rest" week. After 14 days of taking the Xeloda pills, big fat ones 2x a day; and then getting about 3.5 hours of IV Gemcitabine, Taxotere, and numerous secondary drugs, on both of the last Tuesdays, now I'm in the body-recovery space. How does it feel? Who knows really. I'd give myself a 6 or 7 today, pretty normal for the uneventful days; just typical pain mgt, some occasional sudden fatigue, working at hydrating and eating. Both of the latter tasks are much more joblike that I would like, but you don't get to choose. It suddenly feels strange to not be taking the 2x/daily drugs now, but I'll take it. I'm also not aware of any changes in how I feel. All my hair has stayed on my head--and the chest hair is still growing back after Dr. Feelgood gave me the full-service massage. BTW, my mother, since I fianlly asked her, says she did realize what was happening while I was being groped, halfnaked on the gurney..... Honestly I'm not sure it's just my mom playing along like she does when someone in the family makes an obscene joke--yep, even the Mormons do it--and my mom doesn't get it, but she'll laugh along anyway, just to be a good sport. Let's see, the last such joke where this happened had something to do with my mom asking if I might go into the kitchen and "toss some salad" before dinner because I'm so good at it, so I ask "Who told you that?" and she responds, "You've always been good at tossing salad." Then me, well, I was nonplussed... Mothers are not supposed to know that kind of thing; and in reality she doesn't. But did she realize that Dr. F was enjoying himself so thoroughly? And I'm still wondering what kind of tip I owe him for that. Do I pay the insurance company? Do I pay him? Should I break a twenty for singles?
Monday, April 24, 2006
4.24.06, Hunting Season Is Now Open!
Beware! The slings and arrows of men!
No, but wait, they are not calumny or slander, rather they are the razor sharp steel of familial love, dipped before shooting in intimacy, history, and knowing too many embarrassing stories about each other. Quaint and homey in a way, sure, maybe in a, well, Spanish Inquisition sort of way. Btw, today feels kind of like a 7; but now the Franky Scale and the pain scale could coincide, now that I am surrounded with all this love. Not to say I don't enjoy being back home with family, it's just that my family--I hope they forgive me for saying this publicly--have a collective genetic disease whereby the cell phone and/or telephone receiver (deceptively named in English because "receiving" is not at all what hunting season is about, as we all know...) but the telephone receiver never quite developed according to its own DNA plan, independently that is, and instead it fused at some point with the three bones of the ear--stapes, incus, malleus--so that your only hope of looking "normal" in life is not to pretend the thing doesn't exist, no, instead you must love it, touch it, fondle it, dial it, you must call with it--A LOT!; and there's a secondary condition too, short-term memory circuits are in fact short-circuits that think "re-dial"--then forget what they just did--then again "re-dial"--there's even one more call as I write this. (This was our trade-off in the pre-existence to this life: all of my family got this disfiguring phone disease, and I got in the line for cankers, I thought 'Shit, I'd way rather have recurring canker sores than a phone stuck to the side of my head...,' or I at least I thought it was the line for cankers but there some big-ass tall guy in front of me blocking the view and it turns out not have been "cankers" after all but "cancer." My bad.)
And as punishment for ignoring the last ringing on the phone across the room, the phone at my side begins to shake, quiver, and grow in size. With each vibration it swells.... I try to reach it and kill the "ring" option, just to make it stop. It's too late, though. It's growing in size, it's switched from ring to voicemail so there's that 3, or 5, or 10 second pause, and then... ARGHHHHHHHHHH.... more ringing und vibrating to let me know the message has been successfully received. To let me know that hunting season is still on, all's good, "those two aren't just fishing' buddies,".... oops....the only redemption I have now is that I have a medicine cabinet, now, the size of the latest-model Hummer and it has things like antiulcer pills, antiemetic pills, antinausea-from-too-many-call pills, antidiarrhea-from-phonecall pills, antianxiety-from-being-in-Utah pills. Oh yes, there are many alternatives. Now if I can just find my earplugs long enough to get to the pill box....
[of course I love you all, the support is wonderful, we all just seem to get a bit phone happy sometimes where there is a life to live out there. xox]
No, but wait, they are not calumny or slander, rather they are the razor sharp steel of familial love, dipped before shooting in intimacy, history, and knowing too many embarrassing stories about each other. Quaint and homey in a way, sure, maybe in a, well, Spanish Inquisition sort of way. Btw, today feels kind of like a 7; but now the Franky Scale and the pain scale could coincide, now that I am surrounded with all this love. Not to say I don't enjoy being back home with family, it's just that my family--I hope they forgive me for saying this publicly--have a collective genetic disease whereby the cell phone and/or telephone receiver (deceptively named in English because "receiving" is not at all what hunting season is about, as we all know...) but the telephone receiver never quite developed according to its own DNA plan, independently that is, and instead it fused at some point with the three bones of the ear--stapes, incus, malleus--so that your only hope of looking "normal" in life is not to pretend the thing doesn't exist, no, instead you must love it, touch it, fondle it, dial it, you must call with it--A LOT!; and there's a secondary condition too, short-term memory circuits are in fact short-circuits that think "re-dial"--then forget what they just did--then again "re-dial"--there's even one more call as I write this. (This was our trade-off in the pre-existence to this life: all of my family got this disfiguring phone disease, and I got in the line for cankers, I thought 'Shit, I'd way rather have recurring canker sores than a phone stuck to the side of my head...,' or I at least I thought it was the line for cankers but there some big-ass tall guy in front of me blocking the view and it turns out not have been "cankers" after all but "cancer." My bad.)
And as punishment for ignoring the last ringing on the phone across the room, the phone at my side begins to shake, quiver, and grow in size. With each vibration it swells.... I try to reach it and kill the "ring" option, just to make it stop. It's too late, though. It's growing in size, it's switched from ring to voicemail so there's that 3, or 5, or 10 second pause, and then... ARGHHHHHHHHHH.... more ringing und vibrating to let me know the message has been successfully received. To let me know that hunting season is still on, all's good, "those two aren't just fishing' buddies,".... oops....the only redemption I have now is that I have a medicine cabinet, now, the size of the latest-model Hummer and it has things like antiulcer pills, antiemetic pills, antinausea-from-too-many-call pills, antidiarrhea-from-phonecall pills, antianxiety-from-being-in-Utah pills. Oh yes, there are many alternatives. Now if I can just find my earplugs long enough to get to the pill box....
[of course I love you all, the support is wonderful, we all just seem to get a bit phone happy sometimes where there is a life to live out there. xox]
Sunday, April 23, 2006
4.23.06, Slouching off to Zion & The Pain Scale
This morning I'm heading back to Salt Lake City for the next week, for some time with family, some "vacation," and hopefully to gain a few of the pounds lost in my evacuation last week. It's rather like the second coming, but I have been there a few times. (If readers have not realized at this point, the reverence level on these posts varies, usually from rather indifferent to rather inappropriate; I hope you don't mind.)
Yesterday on the Franky Scale was a 7. A great deal of the Daily Numbers Game, as I learn day by day when I purchase my tickets, is has to do with pain management. Despite the irony of my looking fine and generally not feeling "sick" too often during this experience, there is pain which is essentially constant if it goes unchecked, or rather "unmanaged." Their terminology concerning management is quite apt: one does need to keep it in check, prevent it, or maintain it at its very lowest level or else the management become crisis management and every minute until it is checked once again become a minute lost. Among the stupid truisms--like "life is complex"--there is one I keep realizing every day now that "pain is really annoying" or "pain is a pain in the ass" if you will. Even at the lower levels on the pain scale, from 2 to 5 or 6 let's say, there is a certain taxing tedium to simply having it *not go away.* So that sitting, attempting to read, trying to lie down, contemplating eating, etc. etc. all become incrementally or even exponentially more difficult. The next level is what "They" call breakthrough pain, when the constant droning pain suddenly exceeds some unspoken bounds and moves beyond your control.
The point of it all is not to complain but rather to explain where the daily number comes from and the fact that there is much more wisdom in all the Little Pamphlets they offer at the local hospital or cancer center: "Pain Control: A Guide for People with Cancer and Their Families" (National Cancer Institute), "Understanding Chemotherapy: A Guide for Patients and Families" (American Cancer Society), or "When Someone in Your Family Has Cancer" (National Cancer Institute). The "Pain Control" booklet has been invaluable, something to use everyday--but for those of us who expect more flash production and presentation these booklets seem like they would disappoint.
In the end, though the advice comes in unlikely packages and though I tend to make like of the daily numbers game, the extent to which my life now revolves around that abstraction--a "7"--a "3"--or a "5"--seems to be the extent to which my life revolves each day.
Yesterday on the Franky Scale was a 7. A great deal of the Daily Numbers Game, as I learn day by day when I purchase my tickets, is has to do with pain management. Despite the irony of my looking fine and generally not feeling "sick" too often during this experience, there is pain which is essentially constant if it goes unchecked, or rather "unmanaged." Their terminology concerning management is quite apt: one does need to keep it in check, prevent it, or maintain it at its very lowest level or else the management become crisis management and every minute until it is checked once again become a minute lost. Among the stupid truisms--like "life is complex"--there is one I keep realizing every day now that "pain is really annoying" or "pain is a pain in the ass" if you will. Even at the lower levels on the pain scale, from 2 to 5 or 6 let's say, there is a certain taxing tedium to simply having it *not go away.* So that sitting, attempting to read, trying to lie down, contemplating eating, etc. etc. all become incrementally or even exponentially more difficult. The next level is what "They" call breakthrough pain, when the constant droning pain suddenly exceeds some unspoken bounds and moves beyond your control.
The point of it all is not to complain but rather to explain where the daily number comes from and the fact that there is much more wisdom in all the Little Pamphlets they offer at the local hospital or cancer center: "Pain Control: A Guide for People with Cancer and Their Families" (National Cancer Institute), "Understanding Chemotherapy: A Guide for Patients and Families" (American Cancer Society), or "When Someone in Your Family Has Cancer" (National Cancer Institute). The "Pain Control" booklet has been invaluable, something to use everyday--but for those of us who expect more flash production and presentation these booklets seem like they would disappoint.
In the end, though the advice comes in unlikely packages and though I tend to make like of the daily numbers game, the extent to which my life now revolves around that abstraction--a "7"--a "3"--or a "5"--seems to be the extent to which my life revolves each day.
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