Today's the last of a long week for me. Nothing eventful to be marked, save its end, no great ordeals or traumas, no riveting stories — unless you're overly interested in bodily functions and myriad fluids, let's leave that one there — just another name for another bit of time to say a little more has past. Everything seems to continue, and thought the next restaging is a few weeks away, it seems the cancer is moving right along with the time and the gradual diminution of days. Meds keep going, supplements, as well, calls now and then, emails — though I'm slacking there a bit — energy, and the various complications that are what they are and don't need mentioning today.
I do still appreciate the emails, comments, etc. From yesterday, 34DD, thanks and good to hear from you again; TS, I feel all your concern and the love you send and my thoughts are with you though my voice is often disconnectd; Slarry, I always appreciate your willingness to help out and know how genuine it is. Mom is out there somewhere, too, hopefully doing well: if someone could fill me in on today's check up I'd appreciate that. And from a couple of days ago: Jen, I am so sorry we couldn't meet up before your departure. But I hope you're in a better place and things conintue to improve. My thoughts are with you, both of you. Take good care.
My super came up to check out some apartment repairs today. I wasn't in the best form I guess so he asks whether I'm all right, says I look like I might have the flu or something. I thought I had mentioned my "condition" once some time ago, in order to expedite any FedExes that come for me since they're often meds I need, but apparently I hadn't. So for some reason I decided just to tell him, especially as he lives on my floor, he's a good guy, and he does stop by to drop off packages when they show up. (A new sofa in the mail today, a little more comfort for denizens and future guests. . .) Anyway, I told him, "Nah, it's not the flu, I have cancer." And Sam just kind of looked at me, "Jesus, Scott, don't tell me bad news.... What kind of cancer?" It took him a minute to mentally locate the pancreas, and he tells me he's just taking biology right now and has been learning these body parts. He finds it in his mind, then just says "Ah, don't tell me such sad news."
Just straight up, a moment. He didn't know what to say but, like so many of us have learned, if we didn't already know, that's not nearly as important as the sentiment involved. His sincerity was touching. It was just a small real event for the day. I don't know if I should call it a "bright" spot, it did bring some odd relief though. The small human connections.
Today's Franky Scale, related to this event, and seemingly increasing in its import or the degree to which I feel it defines my life right now, is low. Today's been down there, probably a 4 most of the day, though in the last couple of hours there's been some relief. It kind of marks this whole week, a tough one overall. A bit of slide, that.
I wish there were more to pass on, or better to pass on. Maybe with a little more time. Soon it will be thanksgiving, I'll be headed to Zion again, that strange spiritual testing ground of my youth. Family, friends, old places. Memory. Memories. And all the young kids running around in my family providing some sense of future. The travel itself I'm not psyched about, though it's a very manageable trip, still I am looking forward to seeing everyone. So that comes soon. For my friends there I hope you'll be able to stop by — I might not be incredibly mobile there but I should be available.
All right then, just that for a check in today. Thanks again to everybody for the good thoughts, the support, and the love. On we go, for now at least.
P.S. "pho" is soup. No repeat required :)
Friday, November 17, 2006
Thursday, November 16, 2006
11.16.06 Side Effects Roll
The past few days have been greivous on me, nothing written and equally little done as a result. That double shot of chemo on Mon and Tues really add up. The targeted-therapy drug I take daily, tarceva, is the cause of the acne-like side effect but I'm not sure if it's contributing to any of the general nausea or junk sickness. Of course it's not "junk" sickness, still it's just as crappy, dim-light, and cold-water. In any case, today is Day 4 of this new cycle and the nausea, fatigue, and motivation sapping have been severe. Worse that other cycles of chemo? Hard to say.
Some of those who have been very curious about the glyconutrients and their effects might now ask how I'm feeling with them. I'll answer again — who knows. I don't konw. I think "just wait and see" is the only answer. If they've been making me deal better with the chemo, that means the chemo otherwise would have been just about too much to deal with. So my guess is not much effect there.
My chemo nurse on Monday did say that my white blood cell count and nutrophils both looked noticably higher than normal, and asked if if I've been doing something "different." The suggested cause was glyconutrients; as the only really different factor in my diet or treatment/s. But I'd advise the utmost caution in how to read this initial, and not-quite-yet stable change in my labs.
A reminder, too, that the real results appear in other forms, specifically in the form of less cancer. Obvious, yes, but I promise you I'll have to explain this whole thing again a dozen times even to some who "read" the blog.
Franky Scale: 5-6. An improvement from yesterday, which may have been a record.
What I would I predict, as of today: hang tight and don't get overly excited. Stay strong and be prepared to help out more once we can figure out what the "ways" of helping might be.
Some of those who have been very curious about the glyconutrients and their effects might now ask how I'm feeling with them. I'll answer again — who knows. I don't konw. I think "just wait and see" is the only answer. If they've been making me deal better with the chemo, that means the chemo otherwise would have been just about too much to deal with. So my guess is not much effect there.
My chemo nurse on Monday did say that my white blood cell count and nutrophils both looked noticably higher than normal, and asked if if I've been doing something "different." The suggested cause was glyconutrients; as the only really different factor in my diet or treatment/s. But I'd advise the utmost caution in how to read this initial, and not-quite-yet stable change in my labs.
A reminder, too, that the real results appear in other forms, specifically in the form of less cancer. Obvious, yes, but I promise you I'll have to explain this whole thing again a dozen times even to some who "read" the blog.
Franky Scale: 5-6. An improvement from yesterday, which may have been a record.
What I would I predict, as of today: hang tight and don't get overly excited. Stay strong and be prepared to help out more once we can figure out what the "ways" of helping might be.
Monday, November 13, 2006
11.13.06 Who Suggested Twice in a Row?
Two days of chemo in a row is a great deal of suck for one week, is my opinion. I'll just leave it at that. Little recovery time, a lot of hospital bed time, . . . you get the rest. Then today after I returned to my apartment from chemo (it was about 9 am to 1 pm) and slept until about 4:30, I heard this SoundWorks Project (is that the series title?) about a journalist whose father is, was, dying of lung cancer and she decided to record as much of the dying process as she was comfortable with.
Well, the amount she recorded and the manner in which she delivered her report were enough to challenge just how much I could "handle" over the radio. Crying to NPR bespeaks a bad state. In any event, for those interested I suggest you go to the NPR.org web page and check for this story about a father dying of lung cancer, his wife and daughter caring for him, and the details of dying, slowly, in the living room, using a rented a hospital bed in place of the recliner he like so well.
Now, other than that I'm rather beat to report on my. Franky Scale might be a 5, just from sheer fatigue and the feeling of being beaten down. In terms of "new" news I'm not sure if there is much to offer but remind tomorrow to say something about my recent labwork and my white blood cell counts, for example. I think there's a CA 19-9 number from the last day of October too — I will double check but it was above 16000. High. Though Dr. Whiting suggests that due to the marker's halflife it might just be a few weeks still before we're able to know the effects of the current strategy.
Also, there isn't a great deal to say about it, but the Acne-like youthful bloom with which I've been blessed lately does seem to be tied to certain days in the cycle of the drug (tarceva); and I think I should have peaked already and expected it to ease up, less pain, less pressure under the skin of my face and scalp, less teen-age splendor.
If I can, too, I'll give some more answers tomorrow to questions that have been piling up in the Comments section of the blog. Thanks.
Well, the amount she recorded and the manner in which she delivered her report were enough to challenge just how much I could "handle" over the radio. Crying to NPR bespeaks a bad state. In any event, for those interested I suggest you go to the NPR.org web page and check for this story about a father dying of lung cancer, his wife and daughter caring for him, and the details of dying, slowly, in the living room, using a rented a hospital bed in place of the recliner he like so well.
Now, other than that I'm rather beat to report on my. Franky Scale might be a 5, just from sheer fatigue and the feeling of being beaten down. In terms of "new" news I'm not sure if there is much to offer but remind tomorrow to say something about my recent labwork and my white blood cell counts, for example. I think there's a CA 19-9 number from the last day of October too — I will double check but it was above 16000. High. Though Dr. Whiting suggests that due to the marker's halflife it might just be a few weeks still before we're able to know the effects of the current strategy.
Also, there isn't a great deal to say about it, but the Acne-like youthful bloom with which I've been blessed lately does seem to be tied to certain days in the cycle of the drug (tarceva); and I think I should have peaked already and expected it to ease up, less pain, less pressure under the skin of my face and scalp, less teen-age splendor.
If I can, too, I'll give some more answers tomorrow to questions that have been piling up in the Comments section of the blog. Thanks.
Friday, November 10, 2006
11.10.06 Daze and Continue, Dysphoria
Things continue, this series of most bizarre events that I don't doubt any more, nor do I stand in relation of denial to, but still these which I cannot help but wonder at, stupidly. How? Not so much, as: Still?
Franky Scale, 6. Where else can the scale go. Number wise. I can't go too low for fear that I'll instill fear (in you), also for fear that I'll run out of room when the numbers need to take a dive in order to more accurately reflect the overreality of what I'm going through. The range of too low(er) is for later. So, that is the daze. Not that "this can't be happening," but "jesus, this is still going on, and there does seem to be a progression to it."
More thought on this. I only wanted to pass on a few end of week words and give a number. Further, there is not much to report on my condition, other than that it continues. There have been many more questions of late about "how I'm doing" — supposedly this is becuase I've been trying the glyconutrients and people are curious to know whether things are better — but I still can't offer much new information. No marked improvements, nor significant changes to pass on. Except the biggest visible change which is the spots or the acne-like bumps I now have about my face and neck. That's a change? A positive one, who knows? It means that at least one of the new drugs in this chemotherapy regimin is having some effect, but what kind of effect?
Like so much life,...here come more truisms, it's simply of matter of wait and see. Live another day and see how it stacks up to the day before. For me, it feels like the series of days merely increases or continues and their nature as an unbroken string of more or less the same becomes an increasing or continued tedium. Dramatic change for the worse wouldn't solve the problem, of course, but some change . . . I wish I had something more for you.
For now, another Friday, another weekend, another . . . I'll be off to see a Beckett play this weekend — there I will see if I can't rekindle some of that good old existential angst I used to enjoy so much. What used to be such a crucial yet live-giving inconvenience now stands on a far horizon (if the horizon can stand behind one), a figure draped in nostalgia, a figure I'd like to say that is beckoning. But is it? Existential angst, who would have thought this could be missed? Who would have thought there could be so much comfort in a subject-constituting dis-ease or un-ease, in the constant waiting for a guy name Godot . . . who might not even be a guy for all we know?
Existential dysphoria, or gender dysphoria, or cogito dysphoria, or all of the above. What precisely am I getting at? Good question. Hopefully it will produce some angst in attemtps at the answering.
Franky Scale, 6. Where else can the scale go. Number wise. I can't go too low for fear that I'll instill fear (in you), also for fear that I'll run out of room when the numbers need to take a dive in order to more accurately reflect the overreality of what I'm going through. The range of too low(er) is for later. So, that is the daze. Not that "this can't be happening," but "jesus, this is still going on, and there does seem to be a progression to it."
More thought on this. I only wanted to pass on a few end of week words and give a number. Further, there is not much to report on my condition, other than that it continues. There have been many more questions of late about "how I'm doing" — supposedly this is becuase I've been trying the glyconutrients and people are curious to know whether things are better — but I still can't offer much new information. No marked improvements, nor significant changes to pass on. Except the biggest visible change which is the spots or the acne-like bumps I now have about my face and neck. That's a change? A positive one, who knows? It means that at least one of the new drugs in this chemotherapy regimin is having some effect, but what kind of effect?
Like so much life,...here come more truisms, it's simply of matter of wait and see. Live another day and see how it stacks up to the day before. For me, it feels like the series of days merely increases or continues and their nature as an unbroken string of more or less the same becomes an increasing or continued tedium. Dramatic change for the worse wouldn't solve the problem, of course, but some change . . . I wish I had something more for you.
For now, another Friday, another weekend, another . . . I'll be off to see a Beckett play this weekend — there I will see if I can't rekindle some of that good old existential angst I used to enjoy so much. What used to be such a crucial yet live-giving inconvenience now stands on a far horizon (if the horizon can stand behind one), a figure draped in nostalgia, a figure I'd like to say that is beckoning. But is it? Existential angst, who would have thought this could be missed? Who would have thought there could be so much comfort in a subject-constituting dis-ease or un-ease, in the constant waiting for a guy name Godot . . . who might not even be a guy for all we know?
Existential dysphoria, or gender dysphoria, or cogito dysphoria, or all of the above. What precisely am I getting at? Good question. Hopefully it will produce some angst in attemtps at the answering.
Wednesday, November 08, 2006
11.08.06 Shaking Your Head from Side to Side
About all one can do after seeing the Democrats with their success last night, and still this morning. Rumsfeld's departure, apart from being 6 years late, was the best goddam thing that's happened in US politics in a long time. That raises my Franky Scale a full point, regardless of my health. I just read that Bob Woodward book that came out recently, State of Denial, and the thing outlines Rumsfeld's below-the-belt, unethical, sucker punch Machiavellianism quite effectively. Reading it was a strange exercise in slow masochism. One of the greatest problems, I'd say ethically but many of you might call it morally, with this — he never gave two shits about how many lives his megolomaniacal decisions and behavior cost. He was a breed apart.
Let the subpoenas begin!
A different note. One point up on the quality of life for a day. I'd been planning of writing about a new side effect — some genuinely exciting blog news, right? Something I thought a few of you would want to follow, however. As a result of one of my new drugs, I believe it's the oxaliplatin (or is the targtargetedrapy drug tarceva? I'd better check), I've been getting some increasingly sensitive skin issues. Acne like spots appearing to provide me with a (false) bloom of youth, reddish blotches too. The latter are small enough to look almost like acne, and both types of spots, if left alone, are inconspicuous enough to not cause a stir, but rather they seem to give me more color. Or just draw a second glance.
Why do I focus on this? One reason is that I was warned about it, but also told that -if- these side effects occur there is a greater likelihood the drug is working. No promises, mind you. We never get those. But I definitely have the side effects and they are conspicuous enough for me. Therefore I'm hoping for some positive effect from that one drug at least. To have some success in my treatment/s right now would be quite a pleasant surprise.
After the shake-up of Washington's primary evil cabal (yeah, don't get too comfy with the Dem's either I'd say), maybe there is some bit of room to hope. In any event, I almost shit myself this morning when they threw in the bit about resignation among the standard election talk.
Franky Scale = 7.
Let the subpoenas begin!
A different note. One point up on the quality of life for a day. I'd been planning of writing about a new side effect — some genuinely exciting blog news, right? Something I thought a few of you would want to follow, however. As a result of one of my new drugs, I believe it's the oxaliplatin (or is the targtargetedrapy drug tarceva? I'd better check), I've been getting some increasingly sensitive skin issues. Acne like spots appearing to provide me with a (false) bloom of youth, reddish blotches too. The latter are small enough to look almost like acne, and both types of spots, if left alone, are inconspicuous enough to not cause a stir, but rather they seem to give me more color. Or just draw a second glance.
Why do I focus on this? One reason is that I was warned about it, but also told that -if- these side effects occur there is a greater likelihood the drug is working. No promises, mind you. We never get those. But I definitely have the side effects and they are conspicuous enough for me. Therefore I'm hoping for some positive effect from that one drug at least. To have some success in my treatment/s right now would be quite a pleasant surprise.
After the shake-up of Washington's primary evil cabal (yeah, don't get too comfy with the Dem's either I'd say), maybe there is some bit of room to hope. In any event, I almost shit myself this morning when they threw in the bit about resignation among the standard election talk.
Franky Scale = 7.
Tuesday, November 07, 2006
11.07.06 Update..Hope for Elections....?
OK, who knows about the elections? We're all hearing the predictions and the worries, the hopes that there might be some alternative to the Republico-Fascist powers that be. Just go vote, or send in your ballot. The gesture that seems increasingly futile on the one hand is all we've got, for the moment, on the other.
For me, let's say Franky Scale is 6ish. There's been some lesser discomfort lately — both a good and a bad thing — which I think is coming from the "new" bed, the standard expensive mattress option that I recently went for. Sore shoulders and strangeness from not being able to sleep on my back or front. All, I hope, just minor adjustments of learning how to sleep and get by under my "new" circumstances.
Now, I've been offline for a few days, quite busy with this graduate student's PhD defense that took place yesterday. She passed, by the way. Congratulations to you! It was great to see, to have that bit of progress, to have someone's life take a positive step forward. And though I wasn't able to play an enormous role in the process, it was immensely satisfying to help out a bit. Passing on something like mentoring, some kind of knowledge through experience: these things have taken on a new importance to me now that my capacities to contribute are diminished. Which is all to say, though it was physically very challenging to stand up and post yesterday, it was good.
And the point of that paragraph, as it began, was to say that though I've been offline, my guilt-trip about overwhelming response post had some effect. I did get a long comment from Slarry, surprise :-), more questions, and requests to fill in gaps in my story of late. The overall story hasn't changed, the treatments are largely the same, the issues of pain and managing life are similar, but I suppose there are some details that are new.
The glyconutrients, I don't know. Do they work? No one will know that, unless there is some "miracle" that occurs. So I can't say I'd recommend them, nor for what. Nor can I really take the time to tell people how they're supposed to work or why they are worth me trying them. That's not a satisfying answer, I'm sure, but all I can offer for now. I suppose any of you can request info (they have these DVD infomercial things) from Mannatech.com, but beware of the sales pitch and the MLM craziness. I know "hope" is a good thing, but make mistake that these people lose their rationality and they definitely try to sell it to you. Their slogan is "Hope, Health, Opportunity." But if you watch the infomercials, they give you the impression that it's really just about health and hope for relief from disease.
Do we fault them? They're capitalists like most of the rest of us; or like all of us in terms of our socioeconomic participation. It'd be great to escape that enchanted, evil loop, but I, too, need to rely on the traditional medical establishment; I, also, need their drugs, their treatment, their medical degrees. So it goes. We may make a bit of history but only within the situations we're given. Anyway, I take these supplements now almost every two hours.
I still do chemotherapy too. Despite the fact that some of the MLM people say things like "That'll kill ya faster than the cancer. You should rely only on glyconutrients." Well, when it's your life on the line, you do it then. But please stop telling me about it. Chemo does suck, you're right, side effects like nausea, diarrhea, no appetite, wasting away, depression no doubt, etc. But it's also the only route that has any empeempiricaldence that it has helped some people, to some degree. My first round of chemo, at least, brought me a few extra months. That wasn't from taking extra multivitamins. Not to say the latter will be worthless, but they have to be part of a larger integrative approach. Do what's known to "help," even if only a little, and also do what is more risky and unproven.
So I haven't given all the details, I've stayed away from the increasingly complex psychology I experience daily, there are appointments I haven't described, but it's an update none the less.
For me, let's say Franky Scale is 6ish. There's been some lesser discomfort lately — both a good and a bad thing — which I think is coming from the "new" bed, the standard expensive mattress option that I recently went for. Sore shoulders and strangeness from not being able to sleep on my back or front. All, I hope, just minor adjustments of learning how to sleep and get by under my "new" circumstances.
Now, I've been offline for a few days, quite busy with this graduate student's PhD defense that took place yesterday. She passed, by the way. Congratulations to you! It was great to see, to have that bit of progress, to have someone's life take a positive step forward. And though I wasn't able to play an enormous role in the process, it was immensely satisfying to help out a bit. Passing on something like mentoring, some kind of knowledge through experience: these things have taken on a new importance to me now that my capacities to contribute are diminished. Which is all to say, though it was physically very challenging to stand up and post yesterday, it was good.
And the point of that paragraph, as it began, was to say that though I've been offline, my guilt-trip about overwhelming response post had some effect. I did get a long comment from Slarry, surprise :-), more questions, and requests to fill in gaps in my story of late. The overall story hasn't changed, the treatments are largely the same, the issues of pain and managing life are similar, but I suppose there are some details that are new.
The glyconutrients, I don't know. Do they work? No one will know that, unless there is some "miracle" that occurs. So I can't say I'd recommend them, nor for what. Nor can I really take the time to tell people how they're supposed to work or why they are worth me trying them. That's not a satisfying answer, I'm sure, but all I can offer for now. I suppose any of you can request info (they have these DVD infomercial things) from Mannatech.com, but beware of the sales pitch and the MLM craziness. I know "hope" is a good thing, but make mistake that these people lose their rationality and they definitely try to sell it to you. Their slogan is "Hope, Health, Opportunity." But if you watch the infomercials, they give you the impression that it's really just about health and hope for relief from disease.
Do we fault them? They're capitalists like most of the rest of us; or like all of us in terms of our socioeconomic participation. It'd be great to escape that enchanted, evil loop, but I, too, need to rely on the traditional medical establishment; I, also, need their drugs, their treatment, their medical degrees. So it goes. We may make a bit of history but only within the situations we're given. Anyway, I take these supplements now almost every two hours.
I still do chemotherapy too. Despite the fact that some of the MLM people say things like "That'll kill ya faster than the cancer. You should rely only on glyconutrients." Well, when it's your life on the line, you do it then. But please stop telling me about it. Chemo does suck, you're right, side effects like nausea, diarrhea, no appetite, wasting away, depression no doubt, etc. But it's also the only route that has any empeempiricaldence that it has helped some people, to some degree. My first round of chemo, at least, brought me a few extra months. That wasn't from taking extra multivitamins. Not to say the latter will be worthless, but they have to be part of a larger integrative approach. Do what's known to "help," even if only a little, and also do what is more risky and unproven.
So I haven't given all the details, I've stayed away from the increasingly complex psychology I experience daily, there are appointments I haven't described, but it's an update none the less.
Saturday, November 04, 2006
11.0.06 Due to Overwhelming Response
For the readership, I realize that weekends are not Big Blog times based on the traffic reports I get on this site, and that makes sense. Still I was a little surprised there were no requests at all for additional info from my end recently. So be it.
I did have an unexpected doctor's appointment yesterday (resulting in three new scripts — at least temporary ones), a night of some relatively new symptoms that necessitated that, other areas of life are just gliding as they tend to glide — surreally most of the time — there's a symphony tonight downtown I'll be heading to with Kim. Tchaikovsky's 5th, and some work by Berlioz, too, I think. Then a red letter day on Monday when my first graduate student is going to defend her Ph.D. dissertation. One for the academic genealogy. (Which makes you, David, a grandfather in a sense. Doesn't it?) An event I still would have been excited for, however, one that takes on dramatically new significance in light of the Big Casino life I live now.
Today I got a massage, lying on either my right or left side the whole time. Great overall, including some tips about how to stretch more effectively so I can continue to sleep on my sides and not get so tightened up in one shoulder or the other.
Franky Scale would float in around a 6, though the massage period would bump it all up to a 7, a little spike.
[Psych Check]
•My feelings and veiws on this whole experience are morphing once again, a kind of global shift where I'm seeing a period end, a period beginning, wondering all the while whether "period" is even an accurate way to describe the category of experience I'm undergoing, or one could say that we are all undergioundergoing own particular ways. Nothing every happens in a vacuum. Just a vague allusion to feeling here on my part, that they exist, slide, shift modalities, every changing, just to announce a change but not to flesh it out that change just yet, perhaps because I cannot quite get my intellectual paws around it yet.
•Some time back there was more Schock, there was more Fear or Resignation, there was more Curiosity, there even seemed to be an unexpected sense of Enlightenment, satori or kaehwa or call it was you will. It's been a complicated clockwork of expreience through intellect, rawest feeling through most naked experience. What to say? How to describe it? Unidirectionally? Through time, through space? Dialectically? It must be the latter, as anyone who knows me well will attest, good old-fashioned dialecic with a negative twist. Straight up.
Too, it looks like I'll be in SLC for the national genocide holiday. Likely not a long trip but a visit none the less. From Thursday to the end of the weekend I think. (Why does everything seem and feel so tentative these days? Always a "maybe" "as if" "if only" and "perhaps" . . .)
I did have an unexpected doctor's appointment yesterday (resulting in three new scripts — at least temporary ones), a night of some relatively new symptoms that necessitated that, other areas of life are just gliding as they tend to glide — surreally most of the time — there's a symphony tonight downtown I'll be heading to with Kim. Tchaikovsky's 5th, and some work by Berlioz, too, I think. Then a red letter day on Monday when my first graduate student is going to defend her Ph.D. dissertation. One for the academic genealogy. (Which makes you, David, a grandfather in a sense. Doesn't it?) An event I still would have been excited for, however, one that takes on dramatically new significance in light of the Big Casino life I live now.
Today I got a massage, lying on either my right or left side the whole time. Great overall, including some tips about how to stretch more effectively so I can continue to sleep on my sides and not get so tightened up in one shoulder or the other.
Franky Scale would float in around a 6, though the massage period would bump it all up to a 7, a little spike.
[Psych Check]
•My feelings and veiws on this whole experience are morphing once again, a kind of global shift where I'm seeing a period end, a period beginning, wondering all the while whether "period" is even an accurate way to describe the category of experience I'm undergoing, or one could say that we are all undergioundergoing own particular ways. Nothing every happens in a vacuum. Just a vague allusion to feeling here on my part, that they exist, slide, shift modalities, every changing, just to announce a change but not to flesh it out that change just yet, perhaps because I cannot quite get my intellectual paws around it yet.
•Some time back there was more Schock, there was more Fear or Resignation, there was more Curiosity, there even seemed to be an unexpected sense of Enlightenment, satori or kaehwa or call it was you will. It's been a complicated clockwork of expreience through intellect, rawest feeling through most naked experience. What to say? How to describe it? Unidirectionally? Through time, through space? Dialectically? It must be the latter, as anyone who knows me well will attest, good old-fashioned dialecic with a negative twist. Straight up.
Too, it looks like I'll be in SLC for the national genocide holiday. Likely not a long trip but a visit none the less. From Thursday to the end of the weekend I think. (Why does everything seem and feel so tentative these days? Always a "maybe" "as if" "if only" and "perhaps" . . .)
Thursday, November 02, 2006
11.02.06 Getting Back to Speed
New pain requires a new regimen for managing it. So now I’m taking 180 mg of oxycontin daily at regular times, three 60 mg doses every 8 hours or so. (Starting two days ago.) Then to smooth over or catch up with pain in the even to the infamous “breakthrough pain,” there are 5 mg oxycodones to take (the difference being that these are not time-released and the oxycontins are). For about three weeks or so I was experiencing consistently more pain and there was no more effect to be had from hoping that the NCPB (the “block” procedure) had actually done any good.
I’m also at the mini-milestone of just finishing my first week of taking the glyconutrients. These are being taking along with the latest round of chemo, to make that totally clear since one person I heard from was surprised and thought I was taking the supplements in place of chemo. Statistically, empirically speaking, however, if I were to quit the chemo at this point that would mean it’s time to schedule final visits with everyone. So that is not part of my treatment plan right now. The point of the supplements was precisely to try one more avenue of treatment that wouldn’t hurt but might help, but not to endanger myself more than necessary. I got enough of what feels dangerous as is.
In other areas, now that the dust from moving and a number of guests has settled, I’m thinking it might be time to get my head shrunk once more. Or maybe a few times more, depending on how it goes. The process of psychotherapy is always complex, potentially, and when terminal illness is involved I dare say this is exponentially more accurate. My shrink, referred to me through the SCCA, did her training in psycho-oncology, a sub-field I was unaware of before my life took the radical oncological turn. Having trained in how to do psychotherapy specifically with cancer patients — though she will only use the term “survivors” — makes her extremely valuable to me, however, despite that she is younger and has perhaps less experienced with Big Life Issues, if I might generalize, than I would have preferred. But what do I know?
Picking a therapist’s got to be a gut thing, no pun of course, as much as an intellectual thing. And all things considered, now, I feel like a paid sounding board might not be bad. I’ve come farther than the initial prospects, that is, lived longer, but also there is every indication to believe that that fact also means the months remaining are becoming increasingly, what, precious? Just more to process, more unexpected experience, some more practical issues. All these weird phenomena that get labeled under the category “end of life” issues.
Even after all this time, “all this time,” of being sick and knowing what’s coming I still feel the 2 x 4 feeling now and then, but it’s slower and I feel like I can see it coming. So I stand there, or sit, see the thing swinging my way and wait patiently. More of a dull thud than something sharp and sudden. Like the first time I heard, the first no hope news. And yes I know my mother and maybe a few others complain and protest whenever the words “no hope” pop up, yet, I don’t feel it’s responsible to ignore that news . . . it’s getting muddled, in fact, trying to explain my way through this. Which should point out how difficult an issue this is to work through. It may not make a world of sense, so it’s just words getting passed along, and that’s the point of forum, no?
One other point, since I’ve been off line for a bit and slacking in the blog world, let me ask, are there any issues I’ve missed and haven’t been talking about that anyone wants to hear about? I know there has been a restaging, slight changes in treatment, a move, etc. and there’s a good chance I’ve missed some things. So please just post a comment if there is anything.
Franky Scale: a 6 plus today. Quiet and somewhat more painless, so that’s a “plus.”
I’m also at the mini-milestone of just finishing my first week of taking the glyconutrients. These are being taking along with the latest round of chemo, to make that totally clear since one person I heard from was surprised and thought I was taking the supplements in place of chemo. Statistically, empirically speaking, however, if I were to quit the chemo at this point that would mean it’s time to schedule final visits with everyone. So that is not part of my treatment plan right now. The point of the supplements was precisely to try one more avenue of treatment that wouldn’t hurt but might help, but not to endanger myself more than necessary. I got enough of what feels dangerous as is.
In other areas, now that the dust from moving and a number of guests has settled, I’m thinking it might be time to get my head shrunk once more. Or maybe a few times more, depending on how it goes. The process of psychotherapy is always complex, potentially, and when terminal illness is involved I dare say this is exponentially more accurate. My shrink, referred to me through the SCCA, did her training in psycho-oncology, a sub-field I was unaware of before my life took the radical oncological turn. Having trained in how to do psychotherapy specifically with cancer patients — though she will only use the term “survivors” — makes her extremely valuable to me, however, despite that she is younger and has perhaps less experienced with Big Life Issues, if I might generalize, than I would have preferred. But what do I know?
Picking a therapist’s got to be a gut thing, no pun of course, as much as an intellectual thing. And all things considered, now, I feel like a paid sounding board might not be bad. I’ve come farther than the initial prospects, that is, lived longer, but also there is every indication to believe that that fact also means the months remaining are becoming increasingly, what, precious? Just more to process, more unexpected experience, some more practical issues. All these weird phenomena that get labeled under the category “end of life” issues.
Even after all this time, “all this time,” of being sick and knowing what’s coming I still feel the 2 x 4 feeling now and then, but it’s slower and I feel like I can see it coming. So I stand there, or sit, see the thing swinging my way and wait patiently. More of a dull thud than something sharp and sudden. Like the first time I heard, the first no hope news. And yes I know my mother and maybe a few others complain and protest whenever the words “no hope” pop up, yet, I don’t feel it’s responsible to ignore that news . . . it’s getting muddled, in fact, trying to explain my way through this. Which should point out how difficult an issue this is to work through. It may not make a world of sense, so it’s just words getting passed along, and that’s the point of forum, no?
One other point, since I’ve been off line for a bit and slacking in the blog world, let me ask, are there any issues I’ve missed and haven’t been talking about that anyone wants to hear about? I know there has been a restaging, slight changes in treatment, a move, etc. and there’s a good chance I’ve missed some things. So please just post a comment if there is anything.
Franky Scale: a 6 plus today. Quiet and somewhat more painless, so that’s a “plus.”
Wednesday, November 01, 2006
11.01.06 Any Serious Cure for Hiccups? — Guest Blog
[2:15 PM] OK, the excitement mounts as the day progresses, not just for my hiccups. I receieved the Gues Blog from Daisy / DZD that will be posted today. I'm just going to check for typos and tease you all a little longer. Pleae check back later on for another perspective on this strange saga. It's down below...
* * *
Can anybody help with this? The last time I got hiccups it lasted for about 6 hours and was less than entertaining, this time it's been about 45 minutes and any suggestions are welcome. Note, I did check online last time and it seems like I read almost everything in the world and not a single thing worked. Still, my fingers are crossed. What do you know?
Franky Scale: 5ish.
Guest Blog by DZD
[Date: Mon, 30 Oct 2006 13:00:11 -0800 (PST)]
hello faithful readers. dzd here, usually a faithful reader/bloggee but for today, elevated to the glamorous role of guest blogger due to our recent journey to Seattle. who I am in general, and in the life of our much-loved Mr. J, is simple — I am an old friend, I am an (old) “ex,” and Mr. J holds a seat in my pantheon of Important People.
I was nervous to see him. it took me a while, but I figured out why. I discovered that while I really wanted to see him, what I feared was that final moment, that last time saying goodbye, when my visit was over. (in telling this to J a while back, he said it is a familiar syndrome with a name even, the Last Night in Town Syndrome, and that most of his visitors experience it - so I’m not so special ;) - my words, not his). at any rate, I hate the idea that this might be the last time I ever see him. Mr. J is someone I always assumed would be out there somewhere. whether we were in regular contact or not, I counted on being able to call him up, drop him a note, and say, “where are you? what’s your life all about?” it breaks my heart to think that may not be the case. in all truth, I can’t get my head around it. I don't understand.
which brings me to how it felt to see Mr. Jones. was it hard? was it sad? yes, most definitely. it was also normal. it was nice. he sat across from me at brunch, later on drinking coffee and eating doughnuts, at his home for dinner. he is the same solid person, a tangible presence, I can reach across and touch his arm. I can sneak peeks at him when he isn't looking to check and see if he seems different. all reports thus far are true — he looks mostly the same, if slightly more slender, with shadows that cross his face now and again, with a gravity to him that is weightier than before. like I said, I do not understand. it is hard to believe how sick he is despite what we know, what he knows, what he has to constantly face.
our conversations phased between heavy and lighter. it was good as always to hear him talk, to know that he is still the same smart, reflective person. there was no taboo subject. how to best handle complex relationships, friends, and family. how to “do” what he is doing and still try to find little bright spots, little moments that are pleasant. how nice it would be to be able to live in denial more often.
it was a good visit. we (me on my own, as well as my little family unit — Chris & Sadie) spent as many moments as we could together, in between resting periods for us all. I got to see the cats. I got to see J’s life: his apartment, his neighborhood, his city. and of course I got to meet The Girl in his life, who I respect and appreciate, and who is an amazing cook. thank you both for your graciousness and hospitality. it was so nice to just be in your home and eat a meal with you while Sadie cat-hunted. and now we’ve been introduced to mini-kiwis — a very exciting discovery (no more of that furry stuff to deal with).
on the surface of it, an observer might think — it was a standard sort of visit. out of town guests, your usual kinds of activities. but it was not that at all. it was loaded, for sure. there was a heavy knowledge we all carried with us, whether we were talking directly about it or not. (we did both, talked about it, and didn’t). there was a poignancy to everything, each detail mattered. memories floated everywhere.
now I think this can’t be the last time. I can’t imagine that it will be. I will see you again. you are dear to me.
J, there are many things I wish possible for you, though perhaps they are impossibilities. early on after you’d accepted the position at your place of work, you told me that life seemed sort of mundane — each day similar to the last. working for a living and all that. in part that is what I would wish for you — the mundanities in life without any angst. the sense that things could just go on indefinitely. waking up in the morning, going about your business, coming home, feeding the cats, sleeping without pain, waking again without worry aside from the day-to-day variety. the mundanities take on a certain sparkle depending on the perspective from which you view them.
one last thing — a memory, of which I have many. but this particular day is one of doing regular things that took on a certain sparkle due to the company kept. it was Salt Lake, early 90s. a fall day with some rain. if memory serves, we drank some coffee. we browsed the packed aisles of an art supply store while I picked up things I needed and things I didn’t for school. the smell of paints and sharpened pencils and oil pastels, pads and pads of fresh paper. ah. we loved it. most likely after that we ate some food at Cafe Trang or the Red Iguana. then perhaps we napped, read books, ate again, visited with friends. maybe watched a movie. it was a place and time when, cliche as this might sound, everything seemed simple and the company — yours — was what made everything so satisfying and important. thank you for that.
* * *
Can anybody help with this? The last time I got hiccups it lasted for about 6 hours and was less than entertaining, this time it's been about 45 minutes and any suggestions are welcome. Note, I did check online last time and it seems like I read almost everything in the world and not a single thing worked. Still, my fingers are crossed. What do you know?
Franky Scale: 5ish.
Guest Blog by DZD
[Date: Mon, 30 Oct 2006 13:00:11 -0800 (PST)]
hello faithful readers. dzd here, usually a faithful reader/bloggee but for today, elevated to the glamorous role of guest blogger due to our recent journey to Seattle. who I am in general, and in the life of our much-loved Mr. J, is simple — I am an old friend, I am an (old) “ex,” and Mr. J holds a seat in my pantheon of Important People.
I was nervous to see him. it took me a while, but I figured out why. I discovered that while I really wanted to see him, what I feared was that final moment, that last time saying goodbye, when my visit was over. (in telling this to J a while back, he said it is a familiar syndrome with a name even, the Last Night in Town Syndrome, and that most of his visitors experience it - so I’m not so special ;) - my words, not his). at any rate, I hate the idea that this might be the last time I ever see him. Mr. J is someone I always assumed would be out there somewhere. whether we were in regular contact or not, I counted on being able to call him up, drop him a note, and say, “where are you? what’s your life all about?” it breaks my heart to think that may not be the case. in all truth, I can’t get my head around it. I don't understand.
which brings me to how it felt to see Mr. Jones. was it hard? was it sad? yes, most definitely. it was also normal. it was nice. he sat across from me at brunch, later on drinking coffee and eating doughnuts, at his home for dinner. he is the same solid person, a tangible presence, I can reach across and touch his arm. I can sneak peeks at him when he isn't looking to check and see if he seems different. all reports thus far are true — he looks mostly the same, if slightly more slender, with shadows that cross his face now and again, with a gravity to him that is weightier than before. like I said, I do not understand. it is hard to believe how sick he is despite what we know, what he knows, what he has to constantly face.
our conversations phased between heavy and lighter. it was good as always to hear him talk, to know that he is still the same smart, reflective person. there was no taboo subject. how to best handle complex relationships, friends, and family. how to “do” what he is doing and still try to find little bright spots, little moments that are pleasant. how nice it would be to be able to live in denial more often.
it was a good visit. we (me on my own, as well as my little family unit — Chris & Sadie) spent as many moments as we could together, in between resting periods for us all. I got to see the cats. I got to see J’s life: his apartment, his neighborhood, his city. and of course I got to meet The Girl in his life, who I respect and appreciate, and who is an amazing cook. thank you both for your graciousness and hospitality. it was so nice to just be in your home and eat a meal with you while Sadie cat-hunted. and now we’ve been introduced to mini-kiwis — a very exciting discovery (no more of that furry stuff to deal with).
on the surface of it, an observer might think — it was a standard sort of visit. out of town guests, your usual kinds of activities. but it was not that at all. it was loaded, for sure. there was a heavy knowledge we all carried with us, whether we were talking directly about it or not. (we did both, talked about it, and didn’t). there was a poignancy to everything, each detail mattered. memories floated everywhere.
now I think this can’t be the last time. I can’t imagine that it will be. I will see you again. you are dear to me.
J, there are many things I wish possible for you, though perhaps they are impossibilities. early on after you’d accepted the position at your place of work, you told me that life seemed sort of mundane — each day similar to the last. working for a living and all that. in part that is what I would wish for you — the mundanities in life without any angst. the sense that things could just go on indefinitely. waking up in the morning, going about your business, coming home, feeding the cats, sleeping without pain, waking again without worry aside from the day-to-day variety. the mundanities take on a certain sparkle depending on the perspective from which you view them.
one last thing — a memory, of which I have many. but this particular day is one of doing regular things that took on a certain sparkle due to the company kept. it was Salt Lake, early 90s. a fall day with some rain. if memory serves, we drank some coffee. we browsed the packed aisles of an art supply store while I picked up things I needed and things I didn’t for school. the smell of paints and sharpened pencils and oil pastels, pads and pads of fresh paper. ah. we loved it. most likely after that we ate some food at Cafe Trang or the Red Iguana. then perhaps we napped, read books, ate again, visited with friends. maybe watched a movie. it was a place and time when, cliche as this might sound, everything seemed simple and the company — yours — was what made everything so satisfying and important. thank you for that.
Tuesday, October 31, 2006
10.31.06 A Rather Rocky Month
Blog at long last: it's good enough for now, after the kind of the days the past two day have been. I need to pass on more info about the restaging, measurements, information for nerds, tales about taking the glyconutrients, and so much more. Here, for now, are just some of the main points. With a Franky Scale around 5 today.
Chemo today from 2 until almost 7 PM. Of course, we were early, which resulted in the longest lobby wait since I’ve had yet. Ten minutes early will get you into your table/room about 45 minutes late. Today’s drug of choice was a new one: oxaliplatin. New potential side-effects like freezing cold hands if you stick your hand in the fridge or freezer, touch a cold beverage, or numbness, tingling, and/or pain at general exposure to cold, then some something like acne — in how it looks — but just the aesthetic part. Like all the chemo drugs there’s a lot to it. Today, too, I got my Lance Armstrong shot in the arm, “darbo,” short for darbopoetin (sp?).
The drug for chemo yesterday was gemcitabine, one we should be quite familiar with since it’s the one drug that has been part of my chemo from day one, kind of the backbone drug. It was such a lovely and welcome experience yesterday evening to know that I had been thrust again into the hell of hot-cold sweats all night long. It’s far more effective than standard insomnia for keeping you really tired. Chemo yesterday was
Before that Sam was here spreading calm and joy, and I hope, enjoying himself to some degree. There will be more details on the weekend, but first, I know it seems like I’ve been lost in space because of the lack of internet connectivity and I wanted to fix that problem. It will take some time to filter through and then read emails from the past two weeks, but I fully intend to.
Pain
Markedly increased pain for the past few weeks has been the real story, the answer to those who ask and genuinely want to know “How are you doing?” Parts of many days have been spent simply down, lying on a side, sometimes in bed — though on the floor or a rug is just as good for me, a lot of hours lost in this. And a bit more mental energy than I’d like. Every time it’s a matter of recognizing it (easy), addressing it (bit harder), and then just waiting it out. It’s been to the point of upping the daily dosage, playing lots of catch-up, then I will be seeing a Pain Management Specialist at UW soon — I need to call tomorrow to try and push ahead through the current schedules on the books. All this was the core of my talk with Whiting today during my long, long chemotherapy “session.”
Overall I’ve been lost, help captive, living estranged not only from blogging but from email as well. (Sure, feel free to read into that all the metaphors of your choosing.) So there you have it and here I am. Our signal is strong and we should no longer have any outages. With the apartment nearly ready, it’s become much much more comfortable, and we’re almost there. Knowing where, of course, would always be nice.
Chemo today from 2 until almost 7 PM. Of course, we were early, which resulted in the longest lobby wait since I’ve had yet. Ten minutes early will get you into your table/room about 45 minutes late. Today’s drug of choice was a new one: oxaliplatin. New potential side-effects like freezing cold hands if you stick your hand in the fridge or freezer, touch a cold beverage, or numbness, tingling, and/or pain at general exposure to cold, then some something like acne — in how it looks — but just the aesthetic part. Like all the chemo drugs there’s a lot to it. Today, too, I got my Lance Armstrong shot in the arm, “darbo,” short for darbopoetin (sp?).
The drug for chemo yesterday was gemcitabine, one we should be quite familiar with since it’s the one drug that has been part of my chemo from day one, kind of the backbone drug. It was such a lovely and welcome experience yesterday evening to know that I had been thrust again into the hell of hot-cold sweats all night long. It’s far more effective than standard insomnia for keeping you really tired. Chemo yesterday was
Before that Sam was here spreading calm and joy, and I hope, enjoying himself to some degree. There will be more details on the weekend, but first, I know it seems like I’ve been lost in space because of the lack of internet connectivity and I wanted to fix that problem. It will take some time to filter through and then read emails from the past two weeks, but I fully intend to.
Pain
Markedly increased pain for the past few weeks has been the real story, the answer to those who ask and genuinely want to know “How are you doing?” Parts of many days have been spent simply down, lying on a side, sometimes in bed — though on the floor or a rug is just as good for me, a lot of hours lost in this. And a bit more mental energy than I’d like. Every time it’s a matter of recognizing it (easy), addressing it (bit harder), and then just waiting it out. It’s been to the point of upping the daily dosage, playing lots of catch-up, then I will be seeing a Pain Management Specialist at UW soon — I need to call tomorrow to try and push ahead through the current schedules on the books. All this was the core of my talk with Whiting today during my long, long chemotherapy “session.”
Overall I’ve been lost, help captive, living estranged not only from blogging but from email as well. (Sure, feel free to read into that all the metaphors of your choosing.) So there you have it and here I am. Our signal is strong and we should no longer have any outages. With the apartment nearly ready, it’s become much much more comfortable, and we’re almost there. Knowing where, of course, would always be nice.
Thursday, October 26, 2006
10.26.06 Update of Trivia
Very little new is happening, so I'm afraid there's not much to tell other than the day-in day-out of pain management. That seems to be the constant companion in all this, even during the alone hours and the wee hours of the night. My conclusion on the celiac block procedure is that it was a dud. I'm thinking of talking with my oncologist again, but after trying for the first couple of weeks to find some effect and solace in it, I have to admit it doesn't seem to have helped. Alas. Do I do it again? Go to sleep for another 15 or 20 minutes while they put the snake down my gullet, wait for the alcohol shot...? Hm.
Today's Franky Scale might fall in the 6 plus area. But tonight I'm getting out "on the town" determined not to be kept too down by the physical trivia. Then tomorrow Mr. Sam will arrive and I expect a very good, though mellow weekend. Not that I've had any crazy weekends for a while, unless you count moving and having your mom in town.
I'm still on borrowed bandwidth, but waiting for a DSL modem in the mail and then I expect to be back in daily annoying regularity. Till then.
Today's Franky Scale might fall in the 6 plus area. But tonight I'm getting out "on the town" determined not to be kept too down by the physical trivia. Then tomorrow Mr. Sam will arrive and I expect a very good, though mellow weekend. Not that I've had any crazy weekends for a while, unless you count moving and having your mom in town.
I'm still on borrowed bandwidth, but waiting for a DSL modem in the mail and then I expect to be back in daily annoying regularity. Till then.
Wednesday, October 25, 2006
10.25.06 From the Depths of Morning
It's early and I'm stealing bandwidth again. Difference is that I haven't been motivated or seemingly capable of moving myself into any kind of coherent thought or action for some days now. Strange as it may sound, being disconnected from the internet has been a part of it. That problem should be remedied tomorrow. Until then I've found a corner in the far bedroom, the only bedroom in fact, where there often seems to be some unused bit of bandwidth I can snatch. So here I am.
As on all mornings, there is no way to give a Franky Scale this early, but if I gave one for last night it'd be a mid-5. The nights have been diminished of late, for a variety of factors, though the main one is pain. The neurolytic block seems to have done approximately zero good, looking at it from this point, and at night there have been numerous occasions of good old "break-through pain." What can you do? As Dr. Whiting said some time ago when I was experiencing a previous increase of pain: "The pain is your cancer talking."
Not comforting, but I guess, not a thought meant to be. Just one of those cold, chiseled, statements of what is real.
We'll see how long I can maintain this today, maybe return later, perhaps add something about life these days, but for now, top of the morning to you.
As on all mornings, there is no way to give a Franky Scale this early, but if I gave one for last night it'd be a mid-5. The nights have been diminished of late, for a variety of factors, though the main one is pain. The neurolytic block seems to have done approximately zero good, looking at it from this point, and at night there have been numerous occasions of good old "break-through pain." What can you do? As Dr. Whiting said some time ago when I was experiencing a previous increase of pain: "The pain is your cancer talking."
Not comforting, but I guess, not a thought meant to be. Just one of those cold, chiseled, statements of what is real.
We'll see how long I can maintain this today, maybe return later, perhaps add something about life these days, but for now, top of the morning to you.
Sunday, October 22, 2006
10.22.06 Remember the Sabbath Day
Franky Scale today 6. Though the weather has been perfect for the past couple of days, it came with DZD and Chris and Sadie's visit. The a few clouds slipped in just after they left. We spent time together yesterday over brunch, coffee, and dinner, then a farewell coffee this morning in place of church. I failed to ask but I'll see if I can't get a guest blog from Ms. D....(would you?) Before they left, Sadie reportedly was ready to take the cats home with her. "Time to get the cats and take them home." To sunny California weather.
The rest today is calm and quiet, reading time. Won ton soup for lunch at home. Resting up for the "big" week when the glyconutrients are supposed to arrive; they're on their way I'm told. Another phase of treatment, if you will. Then chemo, the third full round (or third round with a new mix of drugs) begins a week from tomorrow. Another short avenue to walk down and see what's there.
The rest today is calm and quiet, reading time. Won ton soup for lunch at home. Resting up for the "big" week when the glyconutrients are supposed to arrive; they're on their way I'm told. Another phase of treatment, if you will. Then chemo, the third full round (or third round with a new mix of drugs) begins a week from tomorrow. Another short avenue to walk down and see what's there.
10.22.06 Remember the Sabbath Day
Franky Scale today 6. Though the weather has been perfect for the past couple of days, it came with DZD and Chris and Sadie's visit. The a few clouds slipped in just after they left. We spent time together yesterday over brunch, coffee, and dinner, then a farewell coffee this morning in place of church. I failed to ask but I'll see if I can't get a guest blog from Ms. D....(would you?) Before they left, Sadie reportedly was ready to take the cats home with her. "Time to get the cats and take them home." To sunny California weather.
The rest today is calm and quiet, reading time. Won ton soup for lunch at home. Resting up for the "big" week when the glyconutrients are supposed to arrive; they're on their way I'm told. Another phase of treatment, if you will. Then chemo, the third full round (or third round with a new mix of drugs) begins a week from tomorrow. Another short avenue to walk down and see what's there.
The rest today is calm and quiet, reading time. Won ton soup for lunch at home. Resting up for the "big" week when the glyconutrients are supposed to arrive; they're on their way I'm told. Another phase of treatment, if you will. Then chemo, the third full round (or third round with a new mix of drugs) begins a week from tomorrow. Another short avenue to walk down and see what's there.
Friday, October 20, 2006
10.20.06 More on a Day in the Life
[the internet window opens for a few minutes, so I do a quick copy and paste job here below. it's slightly dated material, a few days, but it remains accurate for then and various times still now...]
Blog on 17 OCT, written from 10/17 to 10/19.
Progressive cancer. Real timeline. Real-time reminder. No more leeway. No more options but the Miracle. The Miracle and Its Followers. Anger, frustration, pain: these brought to me by the god damned shouts of “Here it comes, here comes the Big One!” referring to the thing. Not hope per se I hate. The idea of pushing it into my face, the idea of shoving forward something that is statistically so improbable. Beware to the salesmen and women of hope. Not to say we’ve quit, or will, just to point out the precarious balance between hope for the self and understanding of the other. All of us stumble, we all get tripped up.
Cut out all forms of *social* enjoyment. All forms that any other would understand. And oneliness results. Nothing but, to find your enjoyment w/o any others in the world, pure seeking/finding (simultaneous same moment birth-fruition enjoyment-purchase) [jump to below then return to finish a thought]. Loved ones, friends, family are all excluded thereby, all left out cold, all left in their community, the one I’m slowly being ostracized from. No person has ordered my expulsion, no gods are angry, rather the mindless dice of the universe, thrown by an agent with no hands, brought by a messenger with no legs, conveyed and explained by a deaf mute diplomat.
It isn’t final, it’s musing. Take it as such. All thoughts must be allowed despite discomfort. Discomfort and pain will exist either way, so why not face the various possibilities? Why not live in acknowledgment? To those filled with the most hope (I know you) think of even the most fundamental foundational myths. The second myth, that of the Garden in one tradition. Facing the worst possibles was necessary and, if you will and for lack of a better word, predestined: there was fruit and an Act to be committed, that would bring ruin to paradise. What was the choice? Was there a choice? Everybody has to take a bite. You don’t have to like apples but you do have to taste them. There is no other way.
Cancer is the capitalism of the body. It grows unchecked, until at some point it will eliminate itself by eliminating its host, its own means of production — me / I will die at the hands of Capital as metaphor. The materialist’s metaphor, the world where words are things and things are words. Of course I will. Spending the better part of the past two decades deep in study of this Thing, the production and replacement of people with the Thing (C), and now the Object of my study is going to get me. I’m being chased down by a nemesis I thought existed Out There somewhere, in the world and constitutive of our world. It’s taken on material form inside me. And revolution. That impossible option (could we call it “hope”?) that remains impossible until it occurs and we all see how inevitable it was. Someone said that.
Another metaphor, that of cleaning: as therapy, as distraction, as practicum, as obsession. What does it mean to ignore human interaction, interaction that is daily becoming more precious by its increasing rarity, for the cleaning domestic space/s? How to negotiate the travel between healing ourselves and hope for healing and just continuing on with as little resistance as possible, which is what we all really want?
Franky Scale: 5 to 6. This would be on the 17th, another connectionless day.
What is new that becomes appealing, a list: Warmth. Absence of pain, dumbly of course and too plain. Fantasy, a novel by Tolstoy or Balzac or Zola with the long drawn-out pans of whole swaths of society as means of escape, fantasy like the Lord of the Rings where the films might be just as good as the books because they now take just as much real-life time to get through as the old-fashioned way of reading, any long stories of something slightly to radically askew or even full allegorical replacement of what’s real. Why? To kill time — ironically and pointlessly, that. (Yes, even I see it, the i. and p., but I must admit them both still, and admit in at least two senses of the word.) To distract the mind from the Real. To instill momentary and delimited hope, even within the scope of screen walls, the bounds of reading time. To be another escape from all the necessities, the so many little must-dos from pills to calories to soap and water to last-“minute” legal paperwork like wills & DNRs to maintaining salary to “finishing” a number of professional tasks that alternate on given days from more to less important — no, it’s binary, just the variation from worth doing to not worth the time. Who knows what will help on any given day.
What else new: small moments, looking elsewhere, rain through a window, a comfortable silence, bits of sleep without dreams. A recent one though, where I am to be tending an old friend’s young child, who is helpless without me, and I am intensely aware of how much depends on me, but it’s all I can do to keep myself awake and responsible and watchful and caring and protective. My own inability to stay awake — in the middle of sleep — keeps me from being a good babysitter. Stuck in this unwaking state with my friend and his wife’s expectations resting heavy upon me, heavy like the sleep upon my eyelids. The child alone with me. A nightmare but still a dream, so I owe you a quarter.
Can you translate all this into numbers? Can this wandering narrative transform itself into a scale? There’s a number above and lots of words in between. More numbers will come. More words, too. Is it all clear about the restaging? The cancer is progressive and the tumors have been growing, which means the last round of chemo was not effective. There is one more round of chemo with other drugs to go; also there is a targeted drug therapy to add to this, with a drug called tarceva (maybe I can do this in a later post). I can’t really explain the hoped-for mechanics of this part of the treatment, all I can do is trust it might do something good. There’s that and the glyconutrients, to see what they add to the mix, what they take from it. With all this there’s waiting and enduring. Living until then.
Blog on 17 OCT, written from 10/17 to 10/19.
Progressive cancer. Real timeline. Real-time reminder. No more leeway. No more options but the Miracle. The Miracle and Its Followers. Anger, frustration, pain: these brought to me by the god damned shouts of “Here it comes, here comes the Big One!” referring to the thing. Not hope per se I hate. The idea of pushing it into my face, the idea of shoving forward something that is statistically so improbable. Beware to the salesmen and women of hope. Not to say we’ve quit, or will, just to point out the precarious balance between hope for the self and understanding of the other. All of us stumble, we all get tripped up.
Cut out all forms of *social* enjoyment. All forms that any other would understand. And oneliness results. Nothing but, to find your enjoyment w/o any others in the world, pure seeking/finding (simultaneous same moment birth-fruition enjoyment-purchase) [jump to below then return to finish a thought]. Loved ones, friends, family are all excluded thereby, all left out cold, all left in their community, the one I’m slowly being ostracized from. No person has ordered my expulsion, no gods are angry, rather the mindless dice of the universe, thrown by an agent with no hands, brought by a messenger with no legs, conveyed and explained by a deaf mute diplomat.
It isn’t final, it’s musing. Take it as such. All thoughts must be allowed despite discomfort. Discomfort and pain will exist either way, so why not face the various possibilities? Why not live in acknowledgment? To those filled with the most hope (I know you) think of even the most fundamental foundational myths. The second myth, that of the Garden in one tradition. Facing the worst possibles was necessary and, if you will and for lack of a better word, predestined: there was fruit and an Act to be committed, that would bring ruin to paradise. What was the choice? Was there a choice? Everybody has to take a bite. You don’t have to like apples but you do have to taste them. There is no other way.
Cancer is the capitalism of the body. It grows unchecked, until at some point it will eliminate itself by eliminating its host, its own means of production — me / I will die at the hands of Capital as metaphor. The materialist’s metaphor, the world where words are things and things are words. Of course I will. Spending the better part of the past two decades deep in study of this Thing, the production and replacement of people with the Thing (C), and now the Object of my study is going to get me. I’m being chased down by a nemesis I thought existed Out There somewhere, in the world and constitutive of our world. It’s taken on material form inside me. And revolution. That impossible option (could we call it “hope”?) that remains impossible until it occurs and we all see how inevitable it was. Someone said that.
Another metaphor, that of cleaning: as therapy, as distraction, as practicum, as obsession. What does it mean to ignore human interaction, interaction that is daily becoming more precious by its increasing rarity, for the cleaning domestic space/s? How to negotiate the travel between healing ourselves and hope for healing and just continuing on with as little resistance as possible, which is what we all really want?
Franky Scale: 5 to 6. This would be on the 17th, another connectionless day.
What is new that becomes appealing, a list: Warmth. Absence of pain, dumbly of course and too plain. Fantasy, a novel by Tolstoy or Balzac or Zola with the long drawn-out pans of whole swaths of society as means of escape, fantasy like the Lord of the Rings where the films might be just as good as the books because they now take just as much real-life time to get through as the old-fashioned way of reading, any long stories of something slightly to radically askew or even full allegorical replacement of what’s real. Why? To kill time — ironically and pointlessly, that. (Yes, even I see it, the i. and p., but I must admit them both still, and admit in at least two senses of the word.) To distract the mind from the Real. To instill momentary and delimited hope, even within the scope of screen walls, the bounds of reading time. To be another escape from all the necessities, the so many little must-dos from pills to calories to soap and water to last-“minute” legal paperwork like wills & DNRs to maintaining salary to “finishing” a number of professional tasks that alternate on given days from more to less important — no, it’s binary, just the variation from worth doing to not worth the time. Who knows what will help on any given day.
What else new: small moments, looking elsewhere, rain through a window, a comfortable silence, bits of sleep without dreams. A recent one though, where I am to be tending an old friend’s young child, who is helpless without me, and I am intensely aware of how much depends on me, but it’s all I can do to keep myself awake and responsible and watchful and caring and protective. My own inability to stay awake — in the middle of sleep — keeps me from being a good babysitter. Stuck in this unwaking state with my friend and his wife’s expectations resting heavy upon me, heavy like the sleep upon my eyelids. The child alone with me. A nightmare but still a dream, so I owe you a quarter.
Can you translate all this into numbers? Can this wandering narrative transform itself into a scale? There’s a number above and lots of words in between. More numbers will come. More words, too. Is it all clear about the restaging? The cancer is progressive and the tumors have been growing, which means the last round of chemo was not effective. There is one more round of chemo with other drugs to go; also there is a targeted drug therapy to add to this, with a drug called tarceva (maybe I can do this in a later post). I can’t really explain the hoped-for mechanics of this part of the treatment, all I can do is trust it might do something good. There’s that and the glyconutrients, to see what they add to the mix, what they take from it. With all this there’s waiting and enduring. Living until then.
Thursday, October 19, 2006
10.19.06 Stealth Post: A Day in the Life, Stage IV
Seems like the last few days off the air have been an eternity. To me, some of you might be thinking, ah, not long enough. ;-) Well see. I have a draft and a blog to post but I'm still battling with "stealing" bandwidth until we get an official internet hook-up in the new apartment — till then it's piecemeal like this. My apologies.
So the key points: Thank you so much everyone who's posted and sent email of support after the restaging. It does suck and all the other unpleasant verbs and descriptors that have and have yet to be used out there. Just not good. Seems like a primary task for me now is some kind of peace-making, some way of coming to grips with this shit, which I'm hesitant to do. Then too, there are still some concrete tasks to slip in between bouts of paralyzing reflection, body-curling slow pain waves, debilitating nausea, and the related shit. No, none of this is maudlin, I'm just not going to bother with couching anything right now because the time vs. politic speech ration seems unbalanced and unfair. Just trying to say this is now what a day in the life is like. More to come on the trivial details later I hope . . . . Though references to "fairness" (above) I also don't like, so scratch that. Appealing to such implies higher powers or processed that could make it all just and fair, and look around to see how often things are well balanced.
In any event, give the Franky Scale a wobbly 6, which makes it go both up and down. There is less nausea this many days out from chemo, the last cycle of which was cut one day short by the restaging. When it's not working, what's the point, that was the logic. But now I'm thinking "Do I start the next type of therapy on Monday or a week from?" A question with both psychological and physiological consequences. Telling, but telling what? Well, let's see first which choice I make.
I will try and get out to a cafe later today so I can post something else/also. For now this is what I got for you, from the calm grey skies of the emerald city.
So the key points: Thank you so much everyone who's posted and sent email of support after the restaging. It does suck and all the other unpleasant verbs and descriptors that have and have yet to be used out there. Just not good. Seems like a primary task for me now is some kind of peace-making, some way of coming to grips with this shit, which I'm hesitant to do. Then too, there are still some concrete tasks to slip in between bouts of paralyzing reflection, body-curling slow pain waves, debilitating nausea, and the related shit. No, none of this is maudlin, I'm just not going to bother with couching anything right now because the time vs. politic speech ration seems unbalanced and unfair. Just trying to say this is now what a day in the life is like. More to come on the trivial details later I hope . . . . Though references to "fairness" (above) I also don't like, so scratch that. Appealing to such implies higher powers or processed that could make it all just and fair, and look around to see how often things are well balanced.
In any event, give the Franky Scale a wobbly 6, which makes it go both up and down. There is less nausea this many days out from chemo, the last cycle of which was cut one day short by the restaging. When it's not working, what's the point, that was the logic. But now I'm thinking "Do I start the next type of therapy on Monday or a week from?" A question with both psychological and physiological consequences. Telling, but telling what? Well, let's see first which choice I make.
I will try and get out to a cafe later today so I can post something else/also. For now this is what I got for you, from the calm grey skies of the emerald city.
Monday, October 16, 2006
10.16.06, Restaging Results: It's Your Cancer Talking
No Franky Scale today, especially since the restaging result will do something to show that the FS doesn't always cut through this situation at the best angle, give us the best cross-section of life to see "how it is" from. My cancer is progressing now. Just a simple answer, progressing. Progressive stage-IV cancer.
All the nodes that were enlarged before are now even larger. The liver tumors, larger. Pancreas, the mother tumor, larger. And the lungs, the small nodules that appeared not to be cancerous before, well, those are larger, too, so the new diagnostic approach might be "Go figure."
This is no artful telling of things. I just wanted to pass on the news and don't have the motivation at this moment to make up a more entertaining story. Besides, there are times when the simple straight-forward telling needs to be left to do its work.
Later I can write about what it was like to have my mom there, I was there with my mom and K, and about how the discussion with Whiting shifted gears slightly into more euphemism and circumlocution. Why do we all get the impression that she wants this? Does she? She and I had a pretty frank talk about it all after coming home — there's another scenario to knock your socks off, sit down with your mom and discuss dying plans, what actual bed you might want to kick off in, and who might be around.
What a day. More later, just thought I'd pass on this much.
[I also allowed that comment from an anonymous person about "glyconutrients," which are still on the docket, but you know, I have thought better of it and this is not the place for people's sales-pitch testimonials so I'm going to yank it. No offense to the poster. But the comment was just about how some product can change your life and that's actually offensive to shove that kind of so-called "hope" into the face of someone who is really, actually sick.]
All the nodes that were enlarged before are now even larger. The liver tumors, larger. Pancreas, the mother tumor, larger. And the lungs, the small nodules that appeared not to be cancerous before, well, those are larger, too, so the new diagnostic approach might be "Go figure."
This is no artful telling of things. I just wanted to pass on the news and don't have the motivation at this moment to make up a more entertaining story. Besides, there are times when the simple straight-forward telling needs to be left to do its work.
Later I can write about what it was like to have my mom there, I was there with my mom and K, and about how the discussion with Whiting shifted gears slightly into more euphemism and circumlocution. Why do we all get the impression that she wants this? Does she? She and I had a pretty frank talk about it all after coming home — there's another scenario to knock your socks off, sit down with your mom and discuss dying plans, what actual bed you might want to kick off in, and who might be around.
What a day. More later, just thought I'd pass on this much.
[I also allowed that comment from an anonymous person about "glyconutrients," which are still on the docket, but you know, I have thought better of it and this is not the place for people's sales-pitch testimonials so I'm going to yank it. No offense to the poster. But the comment was just about how some product can change your life and that's actually offensive to shove that kind of so-called "hope" into the face of someone who is really, actually sick.]
10.16.06, Restaging Results: It's Your Cancer Talking
No Franky Scale today, especially since the restaging result will do something to show that the FS doesn't always cut through this situation at the best angle, give us the best cross-section of life to see "how it is" from. My cancer is progressing now. Just a simple answer, progressing. Progressive stage-IV cancer.
All the nodes that were enlarged before are now even larger. The liver tumors, larger. Pancreas, the mother tumor, larger. And the lungs, the small nodules that appeared not to be cancerous before, well, those are larger, too, so the new diagnostic approach might be "Go figure."
This is no artful telling of things. I just wanted to pass on the news and don't have the motivation at this moment to make up a more entertaining story. Besides, there are times when the simple straight-forward telling needs to be left to do its work.
Later I can write about what it was like to have my mom there, I was there with my mom and K, and about how the discussion with Whiting shifted gears slightly into more euphemism and circumlocution. Why do we all get the impression that she wants this? Does she? She and I had a pretty frank talk about it all after coming home — there's another scenario to knock your socks off, sit down with your mom and discuss dying plans, what actual bed you might want to kick off in, and who might be around.
What a day. More later, just thought I'd pass on this much.
[I also allowed that comment from an anonymous person about "glyconutrients," which are still on the docket, but you know, I have thought better of it and this is not the place for people's sales-pitch testimonials so I'm going to yank it. No offense to the poster. But the comment was just about how some product can change your life and that's actually offensive to shove that kind of so-called "hope" into the face of someone who is really, actually sick, despite a healthy salesperson's best of intentions.]
All the nodes that were enlarged before are now even larger. The liver tumors, larger. Pancreas, the mother tumor, larger. And the lungs, the small nodules that appeared not to be cancerous before, well, those are larger, too, so the new diagnostic approach might be "Go figure."
This is no artful telling of things. I just wanted to pass on the news and don't have the motivation at this moment to make up a more entertaining story. Besides, there are times when the simple straight-forward telling needs to be left to do its work.
Later I can write about what it was like to have my mom there, I was there with my mom and K, and about how the discussion with Whiting shifted gears slightly into more euphemism and circumlocution. Why do we all get the impression that she wants this? Does she? She and I had a pretty frank talk about it all after coming home — there's another scenario to knock your socks off, sit down with your mom and discuss dying plans, what actual bed you might want to kick off in, and who might be around.
What a day. More later, just thought I'd pass on this much.
[I also allowed that comment from an anonymous person about "glyconutrients," which are still on the docket, but you know, I have thought better of it and this is not the place for people's sales-pitch testimonials so I'm going to yank it. No offense to the poster. But the comment was just about how some product can change your life and that's actually offensive to shove that kind of so-called "hope" into the face of someone who is really, actually sick, despite a healthy salesperson's best of intentions.]
Sunday, October 15, 2006
10.15.06 See Attached Comments
OK, parental/sororal visits are demanding, at least in terms of focus. In addition, I'm w/o any internet service right now so get any posts up is miraculous. So the bare bones. Spacely posted a quick summary of her take on her few days here — my mom is still here, so we must await her guest blog or report. She will go back and report, I'm sure. Franky Scale, today maybe a 6, really up and down with the long-hours of moving (on that next para below). Moving day was not too bad at all FOR ME. With all the help it was the easiest move I've probably ever had. Some of the karmic cycle, must be. That day may have been more of a 7 until the end of the day, when the quick wind down must take place. That's natural.
Moving: a huge and wonderful thank you to the hearty souls who spent their Saturday moving over here. From one floor to another, one view to another, one space to much more. The latter being the best aspect of it all. Thank you, thank you, thank you. Pizza and beer — I think there was not a single beer had by any mover-friends, which disturbs me a bit — are hardly enough. Like I said in the invite, however, you will receive some life-lessening in the big wheel of recurring-life game. It's all arranged.
Restaging: the film has been shot, number requested in blood work, etc. so now Monday morning I go meet with Dr. Whiting and we "restage" the damned cancer. We hope, too, that it is has been damned. No more, thanks. Whether I post again tomorrow at any point or whether it has to be in another day or two, based on cable/internet hook-up, I'll give the full details on where it's going now, how it's getting there, or whether.
Too, p.s. to other family, please don't be worried or be impatient if I'm not able to talk on the phone every day or even days at a time, there's a lot going on. Think about hosting mom, in your house, which some of you have done.... that should be sufficient explanation even without moving.
Moving: a huge and wonderful thank you to the hearty souls who spent their Saturday moving over here. From one floor to another, one view to another, one space to much more. The latter being the best aspect of it all. Thank you, thank you, thank you. Pizza and beer — I think there was not a single beer had by any mover-friends, which disturbs me a bit — are hardly enough. Like I said in the invite, however, you will receive some life-lessening in the big wheel of recurring-life game. It's all arranged.
Restaging: the film has been shot, number requested in blood work, etc. so now Monday morning I go meet with Dr. Whiting and we "restage" the damned cancer. We hope, too, that it is has been damned. No more, thanks. Whether I post again tomorrow at any point or whether it has to be in another day or two, based on cable/internet hook-up, I'll give the full details on where it's going now, how it's getting there, or whether.
Too, p.s. to other family, please don't be worried or be impatient if I'm not able to talk on the phone every day or even days at a time, there's a lot going on. Think about hosting mom, in your house, which some of you have done.... that should be sufficient explanation even without moving.
Tuesday, October 10, 2006
10.10.06 Brother Can You Spare a Dime?
Okay, first off this post is in no way a request for money to be sent my way. Thank you in advance if you would have thought to do so; my purpose is, rather, the pissing and the moaning.
On the MLM. The big secretive company that sells the glyconutrient I decided to pursue further. The next step in my treatment program, then, as the standard medical arsenal is slowly exhausted on my cancer (more slowly please...), is to take this stuff "religiously" (below) and hope on the wings of a dove. Maybe some of what they claim will obtain for pancreatic cancer, stage IV, fucking serious as a heart attack, and late in the game. The only way to know is to try it. This is all past, I decided that part recently.
Turns out it will cost me nearly, no, more than a grand just to walk in the door "get all the necessary product to begin, [however] and actually that includes a five month supply of most of it." In MLM land, you don't describe your commodities in the plural — why, I'm not totally sure — but it's a consistent practice to discuss "product." "How much product have we got?" "Not enough! People are dying out there!" or something like that is what I imagine. Even if there are 16 different and unique products involved. There are more at issue here too, not just the magical mannose extracted from aloe vera plants and purported to do too many things to list here. (Not without sufficient caveats on the role of the FDA, our gratitude to them, and the implicit radical fear and loathing of that entire organization. This view, too, is as common in MLM land as calling what you sell "product.") So if I spend approx $1300 I can begin, and of course, they all tell me, they would really like to see me get on this ASAP. For my health of course, surely nothing so cynical as anyone's income stream. For me, a sort of quagmire.
The clear point is that the treatment plan of these nutritional supplements has been set up in such a way, perhaps with good intentions but still no doubt with business and profits in mind, so that a significant initial investment is required. This one "nice man" who had called me from the South to tell me his wife's success story — odd, don't you think?, that he calls me to discuss his wife's story... she can't talk? what? — and he tells me how he thinks the 10.99 pack, also called the Extended Pack, really what I should go for. In part I could feel his "sell level" elevate so I figured "If eleven dollars is the deluxe version, then I'll be able to manage." You see it coming don't you? 10-99 obviously stands for one thousand ninety nine dollars, just under 11 C notes. I'm an idiot, sitting there thinking "Hey, 10-99, not too bad." Not fucking chump change, this 1,099.00 when you are allowed to see where the comma goes. Yes enough to make me think twice about this whole set up.
Do I do it IN SPITE of all the signs I know too well about MLMs, about bullshit testimonials that are not ever verifiable, results that are not empirically checked, research not repeatable, and so on and so on and so on. How do the people involved not see all these holes in the package? How does their faith become so blind and robust? Religious extremists are the same, of any type, Christian, Zionist, Islamic, Protestant, any and all — extremism mixed with religion turns the future as an illusion into the future as sheer nightmare. And all the people who DO NOT worry about how close church and state have become since Bush and Boys started to do there thing in Washington. Another mind boggler. Not to see that danger?!
And the testimonials: god damn. I've told every one of them not to even start because the testimonials mean ZERO to me, they are nothing, less than nothing they might even alienate me, they are just stories, I don't know the people, the people have vested interests, YOUR COMPANY HIRED THEM, HELLO NUMBNUTS!, etc. They still just don't hear me and go on to talk about Aunt Melba, the doctor who is one of the "20 best" in the country. (Did you know there is an official list ranking the best doctors in the US? Right next to the sales paperwork on that bridge I was telling you about...) They tell, they tell, they droll onward, inhabit my ears w/o permission. One or two have enough sense to finally hear me after several very polite warnings from me.
Long and short: I'm deciding what to do. Onto the credit card? Am I going to do it anyway so I may as well get started? Is 200-300/month really so much for a 5-6 month treatment? Of course not if it reverses the disease course, but do you want to know what odds I'd bet on that. Right. I'm stuck? Ideas? Comments? Questions? I did finally get an MD's email address who supposedly knows this whole routine and has been involved since the start — yes, he's got a stake too but perhaps I can get some insight from him.
Ugh. I cannot go on with this tonight, and this after spending half the day at work in my office, experiencing several mini-revelations, slogging through far too much pain this afternoon, just the shits from about 2, and I had this work meeting at 3. Franky Scale then would get a 7 for my verve and anger, mixed in equal portions today, and for the a.m. hours when it all seemed more possible; then it drops to a low 6, just there, hanging, flacid, tired out for the day, as pain is just that, so goddam tiring and impolite.
Then that work thing. I do think those of you who work where I do should work, kindly, on getting me out there more: it's counterintuitive but there is some good to be realized from my sitting this skinny white ass down in that expensive chair to produce something.
On the MLM. The big secretive company that sells the glyconutrient I decided to pursue further. The next step in my treatment program, then, as the standard medical arsenal is slowly exhausted on my cancer (more slowly please...), is to take this stuff "religiously" (below) and hope on the wings of a dove. Maybe some of what they claim will obtain for pancreatic cancer, stage IV, fucking serious as a heart attack, and late in the game. The only way to know is to try it. This is all past, I decided that part recently.
Turns out it will cost me nearly, no, more than a grand just to walk in the door "get all the necessary product to begin, [however] and actually that includes a five month supply of most of it." In MLM land, you don't describe your commodities in the plural — why, I'm not totally sure — but it's a consistent practice to discuss "product." "How much product have we got?" "Not enough! People are dying out there!" or something like that is what I imagine. Even if there are 16 different and unique products involved. There are more at issue here too, not just the magical mannose extracted from aloe vera plants and purported to do too many things to list here. (Not without sufficient caveats on the role of the FDA, our gratitude to them, and the implicit radical fear and loathing of that entire organization. This view, too, is as common in MLM land as calling what you sell "product.") So if I spend approx $1300 I can begin, and of course, they all tell me, they would really like to see me get on this ASAP. For my health of course, surely nothing so cynical as anyone's income stream. For me, a sort of quagmire.
The clear point is that the treatment plan of these nutritional supplements has been set up in such a way, perhaps with good intentions but still no doubt with business and profits in mind, so that a significant initial investment is required. This one "nice man" who had called me from the South to tell me his wife's success story — odd, don't you think?, that he calls me to discuss his wife's story... she can't talk? what? — and he tells me how he thinks the 10.99 pack, also called the Extended Pack, really what I should go for. In part I could feel his "sell level" elevate so I figured "If eleven dollars is the deluxe version, then I'll be able to manage." You see it coming don't you? 10-99 obviously stands for one thousand ninety nine dollars, just under 11 C notes. I'm an idiot, sitting there thinking "Hey, 10-99, not too bad." Not fucking chump change, this 1,099.00 when you are allowed to see where the comma goes. Yes enough to make me think twice about this whole set up.
Do I do it IN SPITE of all the signs I know too well about MLMs, about bullshit testimonials that are not ever verifiable, results that are not empirically checked, research not repeatable, and so on and so on and so on. How do the people involved not see all these holes in the package? How does their faith become so blind and robust? Religious extremists are the same, of any type, Christian, Zionist, Islamic, Protestant, any and all — extremism mixed with religion turns the future as an illusion into the future as sheer nightmare. And all the people who DO NOT worry about how close church and state have become since Bush and Boys started to do there thing in Washington. Another mind boggler. Not to see that danger?!
And the testimonials: god damn. I've told every one of them not to even start because the testimonials mean ZERO to me, they are nothing, less than nothing they might even alienate me, they are just stories, I don't know the people, the people have vested interests, YOUR COMPANY HIRED THEM, HELLO NUMBNUTS!, etc. They still just don't hear me and go on to talk about Aunt Melba, the doctor who is one of the "20 best" in the country. (Did you know there is an official list ranking the best doctors in the US? Right next to the sales paperwork on that bridge I was telling you about...) They tell, they tell, they droll onward, inhabit my ears w/o permission. One or two have enough sense to finally hear me after several very polite warnings from me.
Long and short: I'm deciding what to do. Onto the credit card? Am I going to do it anyway so I may as well get started? Is 200-300/month really so much for a 5-6 month treatment? Of course not if it reverses the disease course, but do you want to know what odds I'd bet on that. Right. I'm stuck? Ideas? Comments? Questions? I did finally get an MD's email address who supposedly knows this whole routine and has been involved since the start — yes, he's got a stake too but perhaps I can get some insight from him.
Ugh. I cannot go on with this tonight, and this after spending half the day at work in my office, experiencing several mini-revelations, slogging through far too much pain this afternoon, just the shits from about 2, and I had this work meeting at 3. Franky Scale then would get a 7 for my verve and anger, mixed in equal portions today, and for the a.m. hours when it all seemed more possible; then it drops to a low 6, just there, hanging, flacid, tired out for the day, as pain is just that, so goddam tiring and impolite.
Then that work thing. I do think those of you who work where I do should work, kindly, on getting me out there more: it's counterintuitive but there is some good to be realized from my sitting this skinny white ass down in that expensive chair to produce something.
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