27 December 2006
Dear Blog:
I apologize that once again, it is me writing and not Scott himself. It’s been a long time since the last post, and much has happened. It is hard to write on behalf of Scott but unfortunately this duty is left to those of us who stay behind.
It is with stumbling fingers and a heavy heart that I report: Scott passed away on Wednesday morning, December 20 in our home in Seattle. He fought against pancreatic cancer for nine months, with the love and support of his friends and family. He was an amazing man, committed, thoughtful, self-reflective, intense and complex.
It’s beyond me to write anything even resembling an obituary, and I hope that you’ll forgive that this post took some time in coming. I don’t know that anyone was prepared to lose him so soon.
Those of us who loved him will miss him terribly, and in time will sort out the next steps.
Services are being planned by friends and family in Salt Lake City and also in Seattle. We’ll try to post the information as it becomes available, but with this entry I’d like to close the blog. I’d like to thank everyone, this community, grown out of love and concern for Scott for being with us on his last journey.
Sincerely
Kim Luu (xyla78@gmail.com)
Gillian Harkins (gharkins@u.washington.edu)
Sheri Swaner (sschapin50@gmail.com
Scott H. Swaner
06 Jan 1968 – 20 Dec 2006
Wednesday, December 27, 2006
Wednesday, December 06, 2006
12.06.06, From Zion, Condition, Updates
[I just sit back here and watch what is happening on this post, this post to cover my ass for all the days I've missed, the days of distraction, trying to cover for pain and other things. Thanks to Kim is all.
]
"Travelogue and Updates"
Tuesday, 28 November 2006
I asked Scott if I could do this blog as an opportunity to share some thoughts. Some of this is indeed a travelogue, on our recent trip to Salt Lake City.
Some thoughts on my past two months in Seattle and learning what it means to live with cancer. Finally, an update on the situation, Scott’s condition, that sits so heavily on everyone’s mind and heart. Perhaps this will be more than some of you are prepared for, and surely not the news you’d prefer to hear, but here I go . . .
There are moments in everyone’s life that for one reason or another stay cemented forever as one of Life’s Defining Moments. Watching a son say goodbye to his mother, both people thinking that perhaps it will be the last time. If it were simply that, it’d be sad but not very unique of a situation. But, the mother is in the Intensive Care Unit at the hospital and the son is visiting her from out of town. The son is 8 months into a fight with Stage IV pancreatic cancer, a disease with a mere 20% survival at one year. It’s a race, for life or death as the case may be – will the elderly mother outlive her son in his fight with cancer, become one of the 80% who do not make it, within the next four months time? Or, will the son beat the odds only to watch his mother succumb to old-age disease, tired body parts and systems slowly failing in an escalating cascade? And what of the family? Trapped in the middle, watching old and young alike struggling as disaster and tragedy lurk around every corner. This is of course all happening to a family that has already experienced another tragedy, another senseless death barely a year ago.
Unfortunately, this does sum up a big part of what I took away from the trip we made to Salt Lake City for Thanksgiving, to visit the Swaner Clan. The trip coincided with his mom being in the hospital due to a yet undiagnosed cardiopulmonary disorder. So, a tough way to spend the holiday, between trying to manage the holiday frenzy and juggling hospital visits to see Scott’s mom, as well as Scott’s own ever increasing issues with cancer.
I hadn’t met most of the family before, and didn’t quite know what to expect even as I had gotten the basic who’s who from Scott. Many interesting observations on human psychology and coping mechanisms, family dynamics and relational roles. I’ll just leave that one there =) Everyone I met was very nice, and I was touched with how involved everyone seemed to be in all the sickness, and helping out wherever they could. I still remember how draining the daily trips to the hospital can be, coupled with the feeling of helplessness and the constant waiting for news, any news from any doctor that might bring the situation closer to resolution. Big thanks to everyone for your graciousness and hospitality.
Shifting gears now to Scott, and how he’s been doing. I’m sure you’ve all sensed from the diminished frequency of blogs that things have been getting tougher as more time passes. If you’ve communicated with him recently indeed his thoughts are darker as the quality of his days increasingly fluctuates towards bad. It’s hard to deny that the clock is ticking louder, if not also faster. Idealistically, every day starts with the hope of being better than the last, but too often these days precisely the opposite seems to happen. It’s rough to start a new day when the night just kicked your ass. The cancer seems to be actively spreading, day by day despite the rage and fight against. It moves faster than we do, faster than we seem capable of adjusting and adapting to. There is no such thing as “managing” the disease, only a weak attempt at not getting steamrolled by it. It seems to manage Scott, dictates what he can and cannot do, what he can or cannot enjoy even. I can launch a complaint, scream that it’s not fair, but what’s the use?
The synopsis is that things have been pretty rough. He spends a lot of time just trying to get the pain under control, which becomes a physically draining task. Most days, he has a tough time even getting started in the morning as his mind seems foggy and slow. The days start with a big dose of pain meds, at whatever hour between 5 and 7 am that the pain becomes unbearable, then lie back down and wait for the meds to kick in and try to catch up on some sleep that didn’t happen the night before. Late morning, try to wake up for real and start some semblance of a day which might include some phone calls, some email, or mostly lying down or sitting still and reading if he still doesn’t feel too great. Try to push down some food in order to take some meds, drink some glycojuice. By the time I get home from work between 5 and 6, often the pain has returned in some (usually pretty serious) capacity. All this to mean, all but a couple hours of each day are pretty much stolen from him, from us, by this loathsome disease. Thus, the challenge becomes: can we make the best of that brief time each day. I won’t deny that it can be overwhelming.
Additionally, Scott’s been experiencing shortness of breath for the past several weeks. Initially, this was attributed to his diminished red cell counts (anemia), as was his general lack of energy and tiredness. These are all very common chemo side effects, and thus not of particular concern. He’s already on a biweekly drug (Darbo) to help manage the anemia. His breathing got acutely worse on the Saturday night/Sunday morning after Thanksgiving while we were in Salt Lake. Bad enough that we paged the doctor on-call in Seattle, to ask what we should do. She actually suggested a range of possibilities, from anxiety and stress on the mild end, to a pulmonary embolism on the severe end as explanations for this sudden change. Her recommendation was to get a chest scan as soon as possible.
Monday morning, back in Seattle we went straight from the airport to the Cancer Care Alliance for what should have been a regularly scheduled chemo appointment. We relayed to the nurse what had happened over the weekend, and she arranged for the CT scan that the on-call doctor had recommended. A quick check of his blood oxygen level put him at 92%, which was not a very good sign as normally it should be closer 97%. Five brutally long hours later, the CT scan showed a pulmonary embolism. Scott was told that the decision to go ahead and do chemo that day anyhow or postpone was his. After all that had happened with not getting any sleep for two nights, waking up early to catch a flight, then all the waiting around at the hospital, he could barely put together a coherent sentence. I tried to get him to eat some soup, and he kept falling asleep with the spoon mid-way to his mouth. Not getting chemo was probably a good idea.
On the pulmonary embolism – it’s essentially a blockage of an artery in the lungs by fat, air, clumped tumor cells, or a blood clot. They’re not sure what caused it, but apparently cancer patients are at an increased risk for developing them due to changes in the clotting mechanism of the body and/or as the tumor spreads. There really isn’t any quick treatment to get rid of the clot, but they gave him an inject-able blood thinner called Lovenox to help dissolve the clot so that his body can slowly resorb it over the next several months. This means he won’t get better very quickly but he shouldn’t get any worse either. They arranged to get oxygen delivered to the apartment that afternoon, to be used ‘as needed’ and so home we went.
I must say that this particular piece of news was difficult to digest. On the one hand, it’s pretty bad news. But it’s uncertain how bad it is, or if something else will come along and be even worse? For now, it’s manageable with the oxygen at home and it’s slowly being treated with the anti-coagulant (blood thinner). In terms of quality of life, it does make it harder but it still doesn’t beat out the pain as the biggest detriment to this factor. It just means this wretched disease is only getting stronger as it takes more away from him . . .
Thursday, 30 November 2006
Fucking cancer. I can’t keep up. In the day and a half since I had started this post, things have changed yet again. It’s progressed, or at least we’re more aware of the progress now than we were two days ago. To be frank, it’s moving fast . . .
I don’t have the complete details as I wasn’t present for today’s appointment, another restaging, but I will relay the details best I can. There has been a significant change in the CA19-9 cancer marker number. This is the number that started approx 12,000 when Scott was first diagnosed. At it’s best, we saw a drop to the 5,000 range after the first several rounds of chemo in May/early June. However, by the second restaging mid-July when we learned that the chemo was losing it’s effectiveness the number started to slowly but steadily rise again . . . 8,000; 9,000; 12,000. We’ve been trying to play catch up ever since. The most recent numbers have seen a much more accelerated increase. I saw a number from November 13th at right under 30,000. Today, we learned that his most recent test (Nov 27th) came back at 41,000.
An update on the pulmonary embolus, which turns out to be emboli. Two of them, one on each lung. Luckily, neither of which are too close to the heart (fear of it breaking off and causing a heart attack). Tumors, and sizes thereof, were not really discussed today as this restaging didn’t involve a pre-restage CT scan.
A significant portion of today’s discussion with Dr. Whiting centered on management of the pain that has been ever increasing, and overall quality of life issues. And yes, end of life issues. The decision to continue with chemo or not was posed, as it’s become evident that there are diminishing returns to balance with the side effects of chemo that have been intermittently manageable, or somewhat heinous as was the case with the acneiform rash from Tarceva.
Some new meds for pain management were prescribed: a fentanyl patch, Dilaudid, and another one that I can’t recall the name of. The thought was that Scott has been seriously under-medicated for pain for a while now, and the hope is to try to get it under control. We keep getting told that he shouldn’t be suffering as much as he is, and maybe this will be a positive change. Although, it is scary that they’re bringing out the big guns on this one, so to speak. As a drug, fentanyl has an analgesic potency of about 80 times that of morphine. The patch is meant to offer a slow but steady dose of this compound continuously. Dilaudid (aka hydromorphone) is one of the most potent narcotics they can prescribe. He’ll give these new drugs a whirl as soon as the prescriptions actually get filled.
I lack Scott’s eloquence and grace with prose, and thus apologize if my delivery is too blunt or harsh. Scott and I have had a few conversations on what to tell people, the friends and family that are concerned for him and anxiously await any updates, any news at all. As difficult as the news is to hear, it has been exponentially harder to deliver and I wanted to help him out on this one. I hope this allows everyone some time to think about and reflect on the situation, what has been happening and what might be happening sooner than we’d all like. Difficult times lie ahead, and your continued support and encouragement do not go unnoticed nor gratefully received.
]
"Travelogue and Updates"
Tuesday, 28 November 2006
I asked Scott if I could do this blog as an opportunity to share some thoughts. Some of this is indeed a travelogue, on our recent trip to Salt Lake City.
Some thoughts on my past two months in Seattle and learning what it means to live with cancer. Finally, an update on the situation, Scott’s condition, that sits so heavily on everyone’s mind and heart. Perhaps this will be more than some of you are prepared for, and surely not the news you’d prefer to hear, but here I go . . .
There are moments in everyone’s life that for one reason or another stay cemented forever as one of Life’s Defining Moments. Watching a son say goodbye to his mother, both people thinking that perhaps it will be the last time. If it were simply that, it’d be sad but not very unique of a situation. But, the mother is in the Intensive Care Unit at the hospital and the son is visiting her from out of town. The son is 8 months into a fight with Stage IV pancreatic cancer, a disease with a mere 20% survival at one year. It’s a race, for life or death as the case may be – will the elderly mother outlive her son in his fight with cancer, become one of the 80% who do not make it, within the next four months time? Or, will the son beat the odds only to watch his mother succumb to old-age disease, tired body parts and systems slowly failing in an escalating cascade? And what of the family? Trapped in the middle, watching old and young alike struggling as disaster and tragedy lurk around every corner. This is of course all happening to a family that has already experienced another tragedy, another senseless death barely a year ago.
Unfortunately, this does sum up a big part of what I took away from the trip we made to Salt Lake City for Thanksgiving, to visit the Swaner Clan. The trip coincided with his mom being in the hospital due to a yet undiagnosed cardiopulmonary disorder. So, a tough way to spend the holiday, between trying to manage the holiday frenzy and juggling hospital visits to see Scott’s mom, as well as Scott’s own ever increasing issues with cancer.
I hadn’t met most of the family before, and didn’t quite know what to expect even as I had gotten the basic who’s who from Scott. Many interesting observations on human psychology and coping mechanisms, family dynamics and relational roles. I’ll just leave that one there =) Everyone I met was very nice, and I was touched with how involved everyone seemed to be in all the sickness, and helping out wherever they could. I still remember how draining the daily trips to the hospital can be, coupled with the feeling of helplessness and the constant waiting for news, any news from any doctor that might bring the situation closer to resolution. Big thanks to everyone for your graciousness and hospitality.
Shifting gears now to Scott, and how he’s been doing. I’m sure you’ve all sensed from the diminished frequency of blogs that things have been getting tougher as more time passes. If you’ve communicated with him recently indeed his thoughts are darker as the quality of his days increasingly fluctuates towards bad. It’s hard to deny that the clock is ticking louder, if not also faster. Idealistically, every day starts with the hope of being better than the last, but too often these days precisely the opposite seems to happen. It’s rough to start a new day when the night just kicked your ass. The cancer seems to be actively spreading, day by day despite the rage and fight against. It moves faster than we do, faster than we seem capable of adjusting and adapting to. There is no such thing as “managing” the disease, only a weak attempt at not getting steamrolled by it. It seems to manage Scott, dictates what he can and cannot do, what he can or cannot enjoy even. I can launch a complaint, scream that it’s not fair, but what’s the use?
The synopsis is that things have been pretty rough. He spends a lot of time just trying to get the pain under control, which becomes a physically draining task. Most days, he has a tough time even getting started in the morning as his mind seems foggy and slow. The days start with a big dose of pain meds, at whatever hour between 5 and 7 am that the pain becomes unbearable, then lie back down and wait for the meds to kick in and try to catch up on some sleep that didn’t happen the night before. Late morning, try to wake up for real and start some semblance of a day which might include some phone calls, some email, or mostly lying down or sitting still and reading if he still doesn’t feel too great. Try to push down some food in order to take some meds, drink some glycojuice. By the time I get home from work between 5 and 6, often the pain has returned in some (usually pretty serious) capacity. All this to mean, all but a couple hours of each day are pretty much stolen from him, from us, by this loathsome disease. Thus, the challenge becomes: can we make the best of that brief time each day. I won’t deny that it can be overwhelming.
Additionally, Scott’s been experiencing shortness of breath for the past several weeks. Initially, this was attributed to his diminished red cell counts (anemia), as was his general lack of energy and tiredness. These are all very common chemo side effects, and thus not of particular concern. He’s already on a biweekly drug (Darbo) to help manage the anemia. His breathing got acutely worse on the Saturday night/Sunday morning after Thanksgiving while we were in Salt Lake. Bad enough that we paged the doctor on-call in Seattle, to ask what we should do. She actually suggested a range of possibilities, from anxiety and stress on the mild end, to a pulmonary embolism on the severe end as explanations for this sudden change. Her recommendation was to get a chest scan as soon as possible.
Monday morning, back in Seattle we went straight from the airport to the Cancer Care Alliance for what should have been a regularly scheduled chemo appointment. We relayed to the nurse what had happened over the weekend, and she arranged for the CT scan that the on-call doctor had recommended. A quick check of his blood oxygen level put him at 92%, which was not a very good sign as normally it should be closer 97%. Five brutally long hours later, the CT scan showed a pulmonary embolism. Scott was told that the decision to go ahead and do chemo that day anyhow or postpone was his. After all that had happened with not getting any sleep for two nights, waking up early to catch a flight, then all the waiting around at the hospital, he could barely put together a coherent sentence. I tried to get him to eat some soup, and he kept falling asleep with the spoon mid-way to his mouth. Not getting chemo was probably a good idea.
On the pulmonary embolism – it’s essentially a blockage of an artery in the lungs by fat, air, clumped tumor cells, or a blood clot. They’re not sure what caused it, but apparently cancer patients are at an increased risk for developing them due to changes in the clotting mechanism of the body and/or as the tumor spreads. There really isn’t any quick treatment to get rid of the clot, but they gave him an inject-able blood thinner called Lovenox to help dissolve the clot so that his body can slowly resorb it over the next several months. This means he won’t get better very quickly but he shouldn’t get any worse either. They arranged to get oxygen delivered to the apartment that afternoon, to be used ‘as needed’ and so home we went.
I must say that this particular piece of news was difficult to digest. On the one hand, it’s pretty bad news. But it’s uncertain how bad it is, or if something else will come along and be even worse? For now, it’s manageable with the oxygen at home and it’s slowly being treated with the anti-coagulant (blood thinner). In terms of quality of life, it does make it harder but it still doesn’t beat out the pain as the biggest detriment to this factor. It just means this wretched disease is only getting stronger as it takes more away from him . . .
Thursday, 30 November 2006
Fucking cancer. I can’t keep up. In the day and a half since I had started this post, things have changed yet again. It’s progressed, or at least we’re more aware of the progress now than we were two days ago. To be frank, it’s moving fast . . .
I don’t have the complete details as I wasn’t present for today’s appointment, another restaging, but I will relay the details best I can. There has been a significant change in the CA19-9 cancer marker number. This is the number that started approx 12,000 when Scott was first diagnosed. At it’s best, we saw a drop to the 5,000 range after the first several rounds of chemo in May/early June. However, by the second restaging mid-July when we learned that the chemo was losing it’s effectiveness the number started to slowly but steadily rise again . . . 8,000; 9,000; 12,000. We’ve been trying to play catch up ever since. The most recent numbers have seen a much more accelerated increase. I saw a number from November 13th at right under 30,000. Today, we learned that his most recent test (Nov 27th) came back at 41,000.
An update on the pulmonary embolus, which turns out to be emboli. Two of them, one on each lung. Luckily, neither of which are too close to the heart (fear of it breaking off and causing a heart attack). Tumors, and sizes thereof, were not really discussed today as this restaging didn’t involve a pre-restage CT scan.
A significant portion of today’s discussion with Dr. Whiting centered on management of the pain that has been ever increasing, and overall quality of life issues. And yes, end of life issues. The decision to continue with chemo or not was posed, as it’s become evident that there are diminishing returns to balance with the side effects of chemo that have been intermittently manageable, or somewhat heinous as was the case with the acneiform rash from Tarceva.
Some new meds for pain management were prescribed: a fentanyl patch, Dilaudid, and another one that I can’t recall the name of. The thought was that Scott has been seriously under-medicated for pain for a while now, and the hope is to try to get it under control. We keep getting told that he shouldn’t be suffering as much as he is, and maybe this will be a positive change. Although, it is scary that they’re bringing out the big guns on this one, so to speak. As a drug, fentanyl has an analgesic potency of about 80 times that of morphine. The patch is meant to offer a slow but steady dose of this compound continuously. Dilaudid (aka hydromorphone) is one of the most potent narcotics they can prescribe. He’ll give these new drugs a whirl as soon as the prescriptions actually get filled.
I lack Scott’s eloquence and grace with prose, and thus apologize if my delivery is too blunt or harsh. Scott and I have had a few conversations on what to tell people, the friends and family that are concerned for him and anxiously await any updates, any news at all. As difficult as the news is to hear, it has been exponentially harder to deliver and I wanted to help him out on this one. I hope this allows everyone some time to think about and reflect on the situation, what has been happening and what might be happening sooner than we’d all like. Difficult times lie ahead, and your continued support and encouragement do not go unnoticed nor gratefully received.
Tuesday, November 21, 2006
11.21.06, The Lost Comment
Franky Scale, held in suspension between 5 and 6, which feels like an improvement after the past many days. The acne/rash I've been dealing with seems to have subsided some in the past few days, but my face does still very much look a piece of modern art, a Pollock. Filled with physical traces of confusion and pressure and possibly some meaning if you stare hard enough.
One result of this is that I now look sick, visibly. This is relatively new. I looked thinner before but "great" according to most family and friends based on what they had expected after not seeing me for some time and knowing that inside me, at least, something is eating my body away. Now with this ocular proof I expect you'd be a little shaken up. This is to be expected.
Now, a lost comment. I approved a comment today, posted on the 19th by "anonymous" and it's quite enigmatic to me. It says something about "for someone who has spent a lot of time thinking about Pascals' wager, it's funny you don't apply the same thinking to your disposable income." Would Anonymous care to shed light on this for me? It's just odd, I'm still trying to piece it together. Did I post somethind financial? Was I musing on money recently? Hm. Now, too, I can't see what post of mine this was attached to. Have to search for it. Or if anyone else finds it, let me know.
OK, I found it, it's connected to the "5.23" post. I read it again. Is it a castigation? Just a prodding to think more carefully? Curious. Curious.
One result of this is that I now look sick, visibly. This is relatively new. I looked thinner before but "great" according to most family and friends based on what they had expected after not seeing me for some time and knowing that inside me, at least, something is eating my body away. Now with this ocular proof I expect you'd be a little shaken up. This is to be expected.
Now, a lost comment. I approved a comment today, posted on the 19th by "anonymous" and it's quite enigmatic to me. It says something about "for someone who has spent a lot of time thinking about Pascals' wager, it's funny you don't apply the same thinking to your disposable income." Would Anonymous care to shed light on this for me? It's just odd, I'm still trying to piece it together. Did I post somethind financial? Was I musing on money recently? Hm. Now, too, I can't see what post of mine this was attached to. Have to search for it. Or if anyone else finds it, let me know.
OK, I found it, it's connected to the "5.23" post. I read it again. Is it a castigation? Just a prodding to think more carefully? Curious. Curious.
Friday, November 17, 2006
11.17.06 Friday Slide
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 :)
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 :)
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.
Monday, October 09, 2006
10.09.06 What I Got to Tell
Frankly there are days when I don’t feel like blogging and telling you anything. I love you, don’t get me wrong. But at base, the frankest level of all, every day struggles in some form. What good does it do? Is it just the connection to you and the communicating of information? Is that sufficient, or is it necessary? Or do I have something “interesting” or worthwhile to say? What the hell is going on here every day? What am I getting closer to? And going through what to get there? Why does there still have to be this teleology? Why am I still looking for something, Something? It must just be the looking or a bad jonez, an addiction
(There was an Anonymous commenter.) On my relationship to anyone’s soul, let alone my own, and with due respect but still, a metaphor that must be extended: well, I have never seen myself as a gardener. I have some plants, but I always kill a few, so I always thought I was one who would spread shit around in the garden of the soul, which perhaps is a step in making it blossom, too. However, is there a link between spreading shit around and making any/one happy? This I didn’t realize, though some degree of support these days more than I expected — do you ever stop to think and expect such things, before the Tragedy arrives? — tells me that I might have at least had some friends who appreciate the shit-spreading. Ah, lucky me. Yet there is another theory, that my blog is actually related in a perverse way to Proust, this is my ironic theory (it has to be an absurd theory and comparison), and not to the quote (itself) on gardening. That is, it puts one to sleep, sends one into a dream world of memory and rest. That much at least could be true.
The MLM debacle, here an example of how an MLM could slow your life down. It could kill you — this might be a more accurate way to put it. Rather, what the salesman said over the phone, so urgently, so sincerely, was, “This’ll save yer life,” he says with his Utah accent. “You have got to start takin’ this product as soon as possible,” and his last name is Smith, another intimate Utah tie. This is an accent, I think, you simply have to know, you know it or you don’t know it. Why does it bother me? Well, to have someone call me up and take my time by talking down to me about how I’m not seeing what is so “clear and obvious” and all this “new science” he kept saying; to have a person telling me what will save my life in such an off-the-cuff manner simply put me off. I have decided to take these supplements, but not to buy into the MLM hype and life-saving BS ideology needed to sustain the motivation of a salesforce. I can rent and watch Glengarry Glen Ross anytime.
Despite this, I’m on my way and have made some calls, taken some calls, and off I go into the land of this “glyconutrient” called mannose, into a little road of hoping for something more. There’s got to be something more for me here down this little road, right? If nothing then nothing, and it’s a cruel circular logic that simply calls it what it is. Am I making any sense? If it helps and gets me along and heals me up at all then we’re getting somewhere. If not, there’s no other road to go down. So, again “so,” I’m rambling along and telling a very indirect story that has an ending picked out for it already. What the hell kind of story is that? I’m stuck with this task of trying to tell it as it happens, then tell it in some way so as to change its very narrative structure as it’s happening. Impossible in a quite different way from Tristram Shandy. Still, impossible. It’s what I’ve got to give. It’s all I got for now.
(There was an Anonymous commenter.) On my relationship to anyone’s soul, let alone my own, and with due respect but still, a metaphor that must be extended: well, I have never seen myself as a gardener. I have some plants, but I always kill a few, so I always thought I was one who would spread shit around in the garden of the soul, which perhaps is a step in making it blossom, too. However, is there a link between spreading shit around and making any/one happy? This I didn’t realize, though some degree of support these days more than I expected — do you ever stop to think and expect such things, before the Tragedy arrives? — tells me that I might have at least had some friends who appreciate the shit-spreading. Ah, lucky me. Yet there is another theory, that my blog is actually related in a perverse way to Proust, this is my ironic theory (it has to be an absurd theory and comparison), and not to the quote (itself) on gardening. That is, it puts one to sleep, sends one into a dream world of memory and rest. That much at least could be true.
The MLM debacle, here an example of how an MLM could slow your life down. It could kill you — this might be a more accurate way to put it. Rather, what the salesman said over the phone, so urgently, so sincerely, was, “This’ll save yer life,” he says with his Utah accent. “You have got to start takin’ this product as soon as possible,” and his last name is Smith, another intimate Utah tie. This is an accent, I think, you simply have to know, you know it or you don’t know it. Why does it bother me? Well, to have someone call me up and take my time by talking down to me about how I’m not seeing what is so “clear and obvious” and all this “new science” he kept saying; to have a person telling me what will save my life in such an off-the-cuff manner simply put me off. I have decided to take these supplements, but not to buy into the MLM hype and life-saving BS ideology needed to sustain the motivation of a salesforce. I can rent and watch Glengarry Glen Ross anytime.
Despite this, I’m on my way and have made some calls, taken some calls, and off I go into the land of this “glyconutrient” called mannose, into a little road of hoping for something more. There’s got to be something more for me here down this little road, right? If nothing then nothing, and it’s a cruel circular logic that simply calls it what it is. Am I making any sense? If it helps and gets me along and heals me up at all then we’re getting somewhere. If not, there’s no other road to go down. So, again “so,” I’m rambling along and telling a very indirect story that has an ending picked out for it already. What the hell kind of story is that? I’m stuck with this task of trying to tell it as it happens, then tell it in some way so as to change its very narrative structure as it’s happening. Impossible in a quite different way from Tristram Shandy. Still, impossible. It’s what I’ve got to give. It’s all I got for now.
Saturday, October 07, 2006
10.07.06 To Do List
OK, this will be quick because I've been having a lot of grief with my internet connection lately and we're off to go "camping," K and I. However, it is car camping I'll admit. We're headed down to the Olympic Peninsula to sleep kind of "on the beach" before the colder fall weather sets in. So that's that part.
Otherwise and also, it's going to be a big month with visits galore once the move is done — and in the process of moving too. Fingers crossed. Many guest blogs, it means. Next week the plan is for my mom and Spacely to come; then DZD the week after; and I think we might have Mr. Sam out too later in the month. What hosting in store!
Since my procedure I'm having a tough time determining whether it's really worked or not. How to decrease the pain meds without being suckered into missing the required dose? It's tricky and I'm still working on that. Yesterday was very up and down for that reason, maybe a 7 on the Franky Scale down to a 5 at one point, till the meds kicked in again. Today's Scale is a 6 let's say but we're hoping for a rise and we get closer to the coast and out in the fresh air.
For now, everyone be well and I'll give a report on things once the weekend's over.
Otherwise and also, it's going to be a big month with visits galore once the move is done — and in the process of moving too. Fingers crossed. Many guest blogs, it means. Next week the plan is for my mom and Spacely to come; then DZD the week after; and I think we might have Mr. Sam out too later in the month. What hosting in store!
Since my procedure I'm having a tough time determining whether it's really worked or not. How to decrease the pain meds without being suckered into missing the required dose? It's tricky and I'm still working on that. Yesterday was very up and down for that reason, maybe a 7 on the Franky Scale down to a 5 at one point, till the meds kicked in again. Today's Scale is a 6 let's say but we're hoping for a rise and we get closer to the coast and out in the fresh air.
For now, everyone be well and I'll give a report on things once the weekend's over.
Thursday, October 05, 2006
10.05.06, Fear of the Dark, Career Choices
“A written sign is proffered in the absence of the addressee. How is this to be qualified?” — Derrida (Margins of Philosophy 315)
And, then too, how is it be qualified, the proffering of a written sign in the absence of the addressor? This is our task now. (Elsewhere in the Margins)
[Fear of the Dark]
Walk in the dark, I’d said. True. Still true. Think of the David Byrne song by that title, think of anything else you know that plays with the metaphor. You walk where you can’t see your steps clearly so you’re forced to just take them if you want to move forward. You stumble, necessarily, you give way now and then, you get swatted by unseen branches at face level. Holes, rocks. Small puddles, silent streams. It’s where some of us are, in a dark space where we know the movement is necessary and the movement is somehow good. Fear is just what it is, mental, avoidable or dealable somehow. It is what it is. And it is more pronounced in the dark.
[Career, Would-Be]
There was a career, something I had worked for, for years and I’d gone through, not all, but still a great deal of the blood, sweat, and tears have been spilt for it. Ups, downs, benders and straights, late-night bridges, the anterooms of retired but venerated shrinks — all this had something to do with my career preparation. Then years of translating, learning to do it better, finding those writings I can feel and connect with, meeting them, planning out their English language futures with them over drinks and drinking promises . . . There was also this sexy world of Continental Philosophy and high theory that called to me when I was a pup, college fourth year, after three years of good old-school training in New Criticism, a door opened into something loosely and irresponsibly called — and we too will call it — the postmodern. There was Marxism, an anti-methodology and a political critique that filled in and jived with all my life experience (yes, Communism, card-carrying membership still holds). Is that a terrorist group? . . . As if I had arrived. After all.
There was and is not a job at Duke University job and this is what it means to me. Let’s be bold and say this was my dream job, almost. One of three potential positions that would allow me to turn my job into what I want it to be — something that has been impossible here at UW. (You see the job once offered to me is now on the market for real, with tenure, with what I’d wanted, freedom to think and write!) C’est la vie. But that is precisely the problem. La vie turning into no more career and into c’est la morte. Not the petit one, but the big one, capital M. The one you don’t return from. When I came to UW I had a job offer from Duke also, but they were not yet prepared to offer it tenure-track. So with an eye toward a bird in the hand I chose to be here. The sacrifice was intellectual freedom, time for free and unrestricted work, and a strong intellectual community of peers. Now that door is opening again and I dare say I’m confident enough I’d get the offer once again, a prospect I spoke to the then-hiring committee about with some promise. But now. But now? How does it make me feel to simply ignore a Big Career move because I’m stepping out of my career? You might guess, it’s stifling, a bit stunning, and extremely thought provoking. I fear, though, there is nothing to do but accept this with some degree of dignity. A sad style of dignity.
Serious cause for pause, thought, reconsideration, reevaluation of this disease and what it means to me.
[New Numbers and Cancer Status]
There were number a week ago that I forgot to pass on, more cancer marker CA19-9 numbers. They have gone up, that direction we don’t like them to go, to about 8500. Just about 2000 points higher than it was at the last check. This was to be expected and the restaging next week will give me more accurate information, with the ocular proof, so we shall “see” more then. And I will still pursue the glyconutrients once I can escape some schmuck in Utah who calls and leaves messages telling me how “You need to start taking this right away, you must start today, it will save your life.” Oh, will it? Thank you for your genuine concern . . . and what did you say your commission was, again? Or did we skip over that? To try in spite of such life forms.
Not only that but to try and keep your chin up, to borrow a phrase, maintain a wry smile or shit-eating grin in the face of it all. Perhaps so long as the smile is there, the wasting away will simply waste away.
And, then too, how is it be qualified, the proffering of a written sign in the absence of the addressor? This is our task now. (Elsewhere in the Margins)
[Fear of the Dark]
Walk in the dark, I’d said. True. Still true. Think of the David Byrne song by that title, think of anything else you know that plays with the metaphor. You walk where you can’t see your steps clearly so you’re forced to just take them if you want to move forward. You stumble, necessarily, you give way now and then, you get swatted by unseen branches at face level. Holes, rocks. Small puddles, silent streams. It’s where some of us are, in a dark space where we know the movement is necessary and the movement is somehow good. Fear is just what it is, mental, avoidable or dealable somehow. It is what it is. And it is more pronounced in the dark.
[Career, Would-Be]
There was a career, something I had worked for, for years and I’d gone through, not all, but still a great deal of the blood, sweat, and tears have been spilt for it. Ups, downs, benders and straights, late-night bridges, the anterooms of retired but venerated shrinks — all this had something to do with my career preparation. Then years of translating, learning to do it better, finding those writings I can feel and connect with, meeting them, planning out their English language futures with them over drinks and drinking promises . . . There was also this sexy world of Continental Philosophy and high theory that called to me when I was a pup, college fourth year, after three years of good old-school training in New Criticism, a door opened into something loosely and irresponsibly called — and we too will call it — the postmodern. There was Marxism, an anti-methodology and a political critique that filled in and jived with all my life experience (yes, Communism, card-carrying membership still holds). Is that a terrorist group? . . . As if I had arrived. After all.
There was and is not a job at Duke University job and this is what it means to me. Let’s be bold and say this was my dream job, almost. One of three potential positions that would allow me to turn my job into what I want it to be — something that has been impossible here at UW. (You see the job once offered to me is now on the market for real, with tenure, with what I’d wanted, freedom to think and write!) C’est la vie. But that is precisely the problem. La vie turning into no more career and into c’est la morte. Not the petit one, but the big one, capital M. The one you don’t return from. When I came to UW I had a job offer from Duke also, but they were not yet prepared to offer it tenure-track. So with an eye toward a bird in the hand I chose to be here. The sacrifice was intellectual freedom, time for free and unrestricted work, and a strong intellectual community of peers. Now that door is opening again and I dare say I’m confident enough I’d get the offer once again, a prospect I spoke to the then-hiring committee about with some promise. But now. But now? How does it make me feel to simply ignore a Big Career move because I’m stepping out of my career? You might guess, it’s stifling, a bit stunning, and extremely thought provoking. I fear, though, there is nothing to do but accept this with some degree of dignity. A sad style of dignity.
Serious cause for pause, thought, reconsideration, reevaluation of this disease and what it means to me.
[New Numbers and Cancer Status]
There were number a week ago that I forgot to pass on, more cancer marker CA19-9 numbers. They have gone up, that direction we don’t like them to go, to about 8500. Just about 2000 points higher than it was at the last check. This was to be expected and the restaging next week will give me more accurate information, with the ocular proof, so we shall “see” more then. And I will still pursue the glyconutrients once I can escape some schmuck in Utah who calls and leaves messages telling me how “You need to start taking this right away, you must start today, it will save your life.” Oh, will it? Thank you for your genuine concern . . . and what did you say your commission was, again? Or did we skip over that? To try in spite of such life forms.
Not only that but to try and keep your chin up, to borrow a phrase, maintain a wry smile or shit-eating grin in the face of it all. Perhaps so long as the smile is there, the wasting away will simply waste away.
Wednesday, October 04, 2006
10.04.06 A Little Walk in the Dark
[Two Days Ago]
Bogged down fatigued but now different from the sudden bouts of chemo-induced fatigue, show stopping not so much as rather a slow incremental and accretive phenomenon — I feel like I’m being drained out and it takes a bit longer to recuperate each time. So, this morning it was tough, tough to get up, a little extra sleep for me please, then up to take care of some life business, those tasks most of you take for granted and never think twice about like returning a DVD or grabbing cat litter at the store dropping off a rent check or following up on a new lease and rental or picking up a reserved book haircut new prescriptions cooking cutting up the food sticking it in your unwelcoming mouth (. . . I even dreamed about making marinara last night but couldn’t get the color right, too orange, not unlike a fra diavalo (oh god, think of Giacamo’s in Boston’s North End, ohhh) but it wasn’t that, it was just straight red sauce but I was lacking the right ingredients, you have to cook for yourself, for guests, there are expectations, but you’re short on ingredients, what do you need . . .), all those little tasks —
[Today's Update]
Where is it all going? Is it the next phase. To the next phase where I move on and explore non-living for a while. A euphemism that came up in a recent conversation with a friend, identities left unrevealed to protect those responsible. For irony, however, what a line. To capture the cheesy new-age perspective of always moving on, always learning, experiencing, flowing, being, receiving, and taking in. To open one’s spirit to the greater spirit of the universe. All peace, no fear. Hm. The new age angle combined with that use of euphemism that attempts to push the real out to the periphery of meaning, to keep us from knowing exactly what is happening or what will happen. The latter being absolutely essential. You could be fully paralyzed from the waist down, no, rather, There is a low likelihood you could experience some partial neurasthesia . . . that’s the kind of line we like given to us. What exactly is a “low” “likelihood”? So is that it, my teleology of exploring the non-life experience? Dark enough. Dark enough?
There is a question that hangs in my mind. Have I been tired out for several days in a row because of a few consecutive strenuous days last week? Does carry some other ominous meaning? Where am I now? Do I make too much of this? Do I censor all this to make it more palatable? Keep people entertained with the little ups and downs that make this a romantic narrative, in the technical sense, a hero quest — me versus the beast, my trusty sword, a bog or swamp or dark forest, and superhuman strength against an inhuman but anthropomorphized creature that eats me alive. Romantic tales end well, we want this to end well, we want to avoid tragedy regardless of how badly we come to need catharsis. No matter how badly some of us need catharsis.
In about two weeks I go in and get restaged once again, the disease gets restaged, and I just lie there, waiting. A few days for the doctor to review the material, look through the pictures, and draw conclusions. Progressive, stable, regressive. Either way it will be news. There will be something new to report. Food for the masses. Food for thought.
Tomorrow is chemo, again. On October 12 I do my next set of CT scans, the restaging, I meet with Dr. Whiting on the 16th and we discuss, in a very philosophical tone, what is to be done. Still haven’t moved yet, perhaps on the 13th. Locals prepare. My life’s worth of moving karma come back to me now. Bring me the good, the strong, the sweaty.
What do you tell your friends, your loved ones? Those closest to you? What do you tell your mother? There are days when you can still smile over the phone, then the odd time or two when the record skips, the lump in your throat, the torrent held there just behind the eyes that must wait, just long enough, just long enough to finish this conversation. Bring me the good and the strong.
Bogged down fatigued but now different from the sudden bouts of chemo-induced fatigue, show stopping not so much as rather a slow incremental and accretive phenomenon — I feel like I’m being drained out and it takes a bit longer to recuperate each time. So, this morning it was tough, tough to get up, a little extra sleep for me please, then up to take care of some life business, those tasks most of you take for granted and never think twice about like returning a DVD or grabbing cat litter at the store dropping off a rent check or following up on a new lease and rental or picking up a reserved book haircut new prescriptions cooking cutting up the food sticking it in your unwelcoming mouth (. . . I even dreamed about making marinara last night but couldn’t get the color right, too orange, not unlike a fra diavalo (oh god, think of Giacamo’s in Boston’s North End, ohhh) but it wasn’t that, it was just straight red sauce but I was lacking the right ingredients, you have to cook for yourself, for guests, there are expectations, but you’re short on ingredients, what do you need . . .), all those little tasks —
[Today's Update]
Where is it all going? Is it the next phase. To the next phase where I move on and explore non-living for a while. A euphemism that came up in a recent conversation with a friend, identities left unrevealed to protect those responsible. For irony, however, what a line. To capture the cheesy new-age perspective of always moving on, always learning, experiencing, flowing, being, receiving, and taking in. To open one’s spirit to the greater spirit of the universe. All peace, no fear. Hm. The new age angle combined with that use of euphemism that attempts to push the real out to the periphery of meaning, to keep us from knowing exactly what is happening or what will happen. The latter being absolutely essential. You could be fully paralyzed from the waist down, no, rather, There is a low likelihood you could experience some partial neurasthesia . . . that’s the kind of line we like given to us. What exactly is a “low” “likelihood”? So is that it, my teleology of exploring the non-life experience? Dark enough. Dark enough?
There is a question that hangs in my mind. Have I been tired out for several days in a row because of a few consecutive strenuous days last week? Does carry some other ominous meaning? Where am I now? Do I make too much of this? Do I censor all this to make it more palatable? Keep people entertained with the little ups and downs that make this a romantic narrative, in the technical sense, a hero quest — me versus the beast, my trusty sword, a bog or swamp or dark forest, and superhuman strength against an inhuman but anthropomorphized creature that eats me alive. Romantic tales end well, we want this to end well, we want to avoid tragedy regardless of how badly we come to need catharsis. No matter how badly some of us need catharsis.
In about two weeks I go in and get restaged once again, the disease gets restaged, and I just lie there, waiting. A few days for the doctor to review the material, look through the pictures, and draw conclusions. Progressive, stable, regressive. Either way it will be news. There will be something new to report. Food for the masses. Food for thought.
Tomorrow is chemo, again. On October 12 I do my next set of CT scans, the restaging, I meet with Dr. Whiting on the 16th and we discuss, in a very philosophical tone, what is to be done. Still haven’t moved yet, perhaps on the 13th. Locals prepare. My life’s worth of moving karma come back to me now. Bring me the good, the strong, the sweaty.
What do you tell your friends, your loved ones? Those closest to you? What do you tell your mother? There are days when you can still smile over the phone, then the odd time or two when the record skips, the lump in your throat, the torrent held there just behind the eyes that must wait, just long enough, just long enough to finish this conversation. Bring me the good and the strong.
Tuesday, October 03, 2006
10.03.06, Into October and the Terminal Window
OK, today is the fourth day since my celiac process block, which is technically one day before the official "day of noticing anything." I notice things with my body all the time, as a result I think I might be oversensitive to changes and am going to withhold my thoughts on it for another day or two. In terms of side-effects or complications, I think I did experience some low blood pressure, some light headedness when getting up, etc.; and in the department of possibly diarrhea I was simply not worried. That kind of thing is usually my last concern, given that my near constant companion is constipation. Our theory, or hoped-for result, is this: the NCPB procedure is successful to some degree, that allows me to decrease how much pain medication I take, the decreased pain medication will allow my GI functions to function nicely and stop giving me such a hard time.
Today's Franky Scale, hm, to say 7 seems high, but I do feel better than yesterday or the day before, which were some kind of 6's. I'm taking life a little easier today; yesterday was one of those "let's got to campus and pretend that I still have a job and I still work on a regular basis and that I'm still productive..." — one of those kind of days. Funny thing is, I think several of us have days like that even without terminal illness! Ha. What a funny lot, humans.
As part of my mellow plan for today I have some more packing and cleaning up to do. The move to a new apartment has yet to take place — so no, friends, none of you local people I want to rope into this are off the hook, not by a long shot! — there are some strange issues of slowness the apt. manager needs to work out before we can do anything. (He has some efficiency deficiencies, & moving into an apartment two weeks later than scheduled is the price to pay.)
There are stories piling up, ALREADY, that have to do with the ridiculous and insensitive types who people the Multi-Level Marketing world. God damn, there is a real nut job who has been calling me and trying to impress me with how hard he's going to work at showing me "this is not about making a sale, man." And yes, he added the "man" on the end of that.
Ah. I almost forgot the title. The "Terminal Window" refers to the fact that now I'm at the six-month mark since my diagnosis not just of having pancreatic cancer but of its metastasizing and starting to eat the rest of my body. That was when I was told "On average, most patients with this die in 6 to 8 months." So here I am, standing on the 6-month precipice. Watching, waiting. Thinking some existentially centered blogs might be in the works somewhere in my brain.
Today's Franky Scale, hm, to say 7 seems high, but I do feel better than yesterday or the day before, which were some kind of 6's. I'm taking life a little easier today; yesterday was one of those "let's got to campus and pretend that I still have a job and I still work on a regular basis and that I'm still productive..." — one of those kind of days. Funny thing is, I think several of us have days like that even without terminal illness! Ha. What a funny lot, humans.
As part of my mellow plan for today I have some more packing and cleaning up to do. The move to a new apartment has yet to take place — so no, friends, none of you local people I want to rope into this are off the hook, not by a long shot! — there are some strange issues of slowness the apt. manager needs to work out before we can do anything. (He has some efficiency deficiencies, & moving into an apartment two weeks later than scheduled is the price to pay.)
There are stories piling up, ALREADY, that have to do with the ridiculous and insensitive types who people the Multi-Level Marketing world. God damn, there is a real nut job who has been calling me and trying to impress me with how hard he's going to work at showing me "this is not about making a sale, man." And yes, he added the "man" on the end of that.
Ah. I almost forgot the title. The "Terminal Window" refers to the fact that now I'm at the six-month mark since my diagnosis not just of having pancreatic cancer but of its metastasizing and starting to eat the rest of my body. That was when I was told "On average, most patients with this die in 6 to 8 months." So here I am, standing on the 6-month precipice. Watching, waiting. Thinking some existentially centered blogs might be in the works somewhere in my brain.
Sunday, October 01, 2006
10.01.06, More on Glyconutrients and Alternative Treatments
Sunday here on the ranch. As far as updates from the NCPB procedure I’m not sure there’s a lot to report, since it was so minor I think there’s little to keep track of, except for possible complications. None of those, it seems. Whether it was successful is also hard to say at this point since Dr. Saunders says it usually takes at least 5 days to “kick in.” The deadening of nerves to kick in is an odd turn of phrase. But I wait for the kicking in of nothingness, no more pain feelings fingers crossed I hope. We shall see.
Today’s post is mostly boring and treatment related, details for the info junkies or the concerned. Not much psychological investigation, nothing very profound, although a choice described about one new treatment option that might “give hope” to some (there’s a little cheese for you ☺).
Glyconutrients & the Great Open Mind.
I wanted to also give an update about continuing treatment/s and what I’m doing about the cancer. Right now, I’m in the second round of my second type of chemo treatments, the TGX as opposed to GTX approach. This, too, is too early to report on, though I will have my restaging on around the 17th of this month and new CT scans will tell how the various tumors are doing. Poorly we hope.
Also, I’ve been doing more checking and soliciting of what I think are qualified opinions and I think I’m going to try out this glyconutrient “treatment.” It’s something to run by Dr. Whiting, but I since there aren’t known drawbacks it should be a viable option. The fact that it’s distributed through an MLM, as I noted before, is less than ideal, but on the open-mind front I wanted to reassure the doubters that I don’t conflate the distributor and the product, so no worry there. The long and short of it is that their glyconutrient product, I believe sold through the company MannaTech or Manna Tech (sp?), is an extracted form of a carbohydrate called mannose, and some others added to it, from aloe vera. The claim is that our bodies don’t get enough of this anymore and by supplementing it our bodies are able to function at peak performance, fight disease more efficiently, and thus allow for other, actual drug treatments (since this one’s not a drug) to work better too. The company’s claims for success are, as you’d expect, as high as the sky.
Out of all the alternative approaches suggested to me this one stands alone, so far, in having some actual science behind it. No way to guarantee success with it, of course, but at least there are numerous studies saying that the science of it works, that in theory it might be a help. So it’s a nothing to lose — except some money — and possibly a lot to gain. I want to be cautious on the hopeful gains, for obvious reasons.
I realized today, too, as I was loading up my weekly pill box with the various drugs and supplements I’m taking, with Ms. K there watching the process, that I should clarify what kinds of things I’m taking. I do take lots of pills, but I think I might have given the impression that they are all actual drugs, mainstream pharmaceuticals, all prescription, anti-cancer, etc. Not so. K was even surprised a bit at the number of supplements involved. So that might be news to some of you. I only take a limited number of anti-cancer (chemo) drugs and the majority of the pills are supplements of various types (from fish oil, green tea extract, standard vitamins and minerals, etc.). I do try to keep my skepticism level high regarding all the suggestions I’m given, and I’m grateful for them to all who send them my way, it’s just that they all need to be researched, evaluated, and decided upon. In the end, I’m taking a fair amount of the non-prescribed, non-standard stuff — again the low risk and some potential return theory — and I hope this is comforting to some of you who have suggested alternatives I may not be following. The mind is more open than some may have suspected, is what I hope this indicates.
And a Franky Scale about 6 plus.
Today’s post is mostly boring and treatment related, details for the info junkies or the concerned. Not much psychological investigation, nothing very profound, although a choice described about one new treatment option that might “give hope” to some (there’s a little cheese for you ☺).
Glyconutrients & the Great Open Mind.
I wanted to also give an update about continuing treatment/s and what I’m doing about the cancer. Right now, I’m in the second round of my second type of chemo treatments, the TGX as opposed to GTX approach. This, too, is too early to report on, though I will have my restaging on around the 17th of this month and new CT scans will tell how the various tumors are doing. Poorly we hope.
Also, I’ve been doing more checking and soliciting of what I think are qualified opinions and I think I’m going to try out this glyconutrient “treatment.” It’s something to run by Dr. Whiting, but I since there aren’t known drawbacks it should be a viable option. The fact that it’s distributed through an MLM, as I noted before, is less than ideal, but on the open-mind front I wanted to reassure the doubters that I don’t conflate the distributor and the product, so no worry there. The long and short of it is that their glyconutrient product, I believe sold through the company MannaTech or Manna Tech (sp?), is an extracted form of a carbohydrate called mannose, and some others added to it, from aloe vera. The claim is that our bodies don’t get enough of this anymore and by supplementing it our bodies are able to function at peak performance, fight disease more efficiently, and thus allow for other, actual drug treatments (since this one’s not a drug) to work better too. The company’s claims for success are, as you’d expect, as high as the sky.
Out of all the alternative approaches suggested to me this one stands alone, so far, in having some actual science behind it. No way to guarantee success with it, of course, but at least there are numerous studies saying that the science of it works, that in theory it might be a help. So it’s a nothing to lose — except some money — and possibly a lot to gain. I want to be cautious on the hopeful gains, for obvious reasons.
I realized today, too, as I was loading up my weekly pill box with the various drugs and supplements I’m taking, with Ms. K there watching the process, that I should clarify what kinds of things I’m taking. I do take lots of pills, but I think I might have given the impression that they are all actual drugs, mainstream pharmaceuticals, all prescription, anti-cancer, etc. Not so. K was even surprised a bit at the number of supplements involved. So that might be news to some of you. I only take a limited number of anti-cancer (chemo) drugs and the majority of the pills are supplements of various types (from fish oil, green tea extract, standard vitamins and minerals, etc.). I do try to keep my skepticism level high regarding all the suggestions I’m given, and I’m grateful for them to all who send them my way, it’s just that they all need to be researched, evaluated, and decided upon. In the end, I’m taking a fair amount of the non-prescribed, non-standard stuff — again the low risk and some potential return theory — and I hope this is comforting to some of you who have suggested alternatives I may not be following. The mind is more open than some may have suspected, is what I hope this indicates.
And a Franky Scale about 6 plus.
Saturday, September 30, 2006
9.30.06, A Settling Process
Just a quick check in for now, though I'll try to post more tonight. Today's Franky Scale is somewhere in the 6 range; and yesterday maybe fell into the 4 range at some point. Post general anaesthesia never feels great to me, although the procedure itself seemed much better than my last EUS/endoscopic ultrasound, less tearing up of my throat, now swallowing issues, or feeling like that epiglottis thingy in the back of my throat my actual come of and get swallowed. That last one when they took the biopsies was just shitty. So the post-procedure day was difficult with gut pain and the slow dying off of my celiac plexus, the gradual easing off of the local anaesthetic, and just fatigue from chemo left over. Today's a great improvement. For what it's worth.
Friday, September 29, 2006
9.29.06 Pre-Results of NCPB
First result, I am alive. I survived the, granted, minor, procedure this morning, by which they were slipping a hose equipped with ultrasound and a fine aspirate (called this?) needle down my throat, found the celiac plexus, then loaded that sucker up with pure alcohol. In five to ten (5-10) days the nerves of the celiac plexus are supposed to wither up and suffer a neurolytic death right before my eyes. The hoped-for benefit being that the majority of my pain will drastically diminish or disappear. We wait and see on this.
Seventy-four percent of patients who undergo this procedure experience decreased pain, so the odds are good and so far I've demonstrated I'm one to beat the odds. At least, I should clarify, one to finagle my way into the small odds group. The unlikelies. So within ten days I should know that; and the other key number is fourteen (14) which is the outside number for feeling any relief. That is, if I feel no relief by the end of two weeks, we assume it didn't work and I can choose to try and do it again — I assume that one would be "free." Kind of a two-fer one deal.
Anyway, today I sleep a lot. Ate Indian food for lunch, during which Ted dropped by and inspected my well-being generally. It's been a while actually. Now I just kind of fritter around and re-examine all the physical feelings I'm having: more or less pain? is that new pain I'm feeling from the alcohol injection? is that feeling of tenderness from the hose shoved down my throat? Lots of such questions. It's become just part of life for me. The crazy set of thoughts I have, especially when compared to my thoughts "before cancer," is so wild.
"Before cancer," that's almost a good book title, or title for this period I'm no living through — though it's not very accurate, so we have a problem there. I am still taking suggestions, btw, for any one interested, and I have the heretofore suggestions in a file stowed away, waiting to be dropped into the bottle before the ship is sucked into the whirlpool. For now, though, thoughts of dinner, and is that a new pain or from an old corner of my mattress?
Seventy-four percent of patients who undergo this procedure experience decreased pain, so the odds are good and so far I've demonstrated I'm one to beat the odds. At least, I should clarify, one to finagle my way into the small odds group. The unlikelies. So within ten days I should know that; and the other key number is fourteen (14) which is the outside number for feeling any relief. That is, if I feel no relief by the end of two weeks, we assume it didn't work and I can choose to try and do it again — I assume that one would be "free." Kind of a two-fer one deal.
Anyway, today I sleep a lot. Ate Indian food for lunch, during which Ted dropped by and inspected my well-being generally. It's been a while actually. Now I just kind of fritter around and re-examine all the physical feelings I'm having: more or less pain? is that new pain I'm feeling from the alcohol injection? is that feeling of tenderness from the hose shoved down my throat? Lots of such questions. It's become just part of life for me. The crazy set of thoughts I have, especially when compared to my thoughts "before cancer," is so wild.
"Before cancer," that's almost a good book title, or title for this period I'm no living through — though it's not very accurate, so we have a problem there. I am still taking suggestions, btw, for any one interested, and I have the heretofore suggestions in a file stowed away, waiting to be dropped into the bottle before the ship is sucked into the whirlpool. For now, though, thoughts of dinner, and is that a new pain or from an old corner of my mattress?
Thursday, September 28, 2006
9.28.06, Go in Fear...
Go in fear of abstractions. Fine, just don't go in fear of chemotherapy. There are a lot of thing one's psychology can lead a person into, with smells, small pricks, extended stretches in an adjustable bed, and hospital eating, a lot on the down side, but we keep doing it every week. Today, too, chemotherapy and its joys. For all I know it might even be helping. Something we should learn in about two weeks when I do the next restaging with Dr. Whiting, the CT scan machine, and more bloodwork.
For today, just this, "hello," I won't give you a Franky Scale for today, I mean I'm about to swallow chemo drugs and I havn't even had my fucking coffee. (think the 1970s commercial for 7-Eleven coffee where the guy is driving to work in a convertable and he has a wolf face to all his neighbors and other commuters, UNTIL he gets his coffee at Sev...) It's me too. But yesterday was 6 to 7, backing up and down to each number. Got higher with the day however. After the marathon of travel from JFK to SEA-TAC two days ago, fogettaboutit.
Clear Pile of Shit award today: (after I unconsciously plugged them too! Goddam it.) the winner is 7-Eleven for deciding to stop selling CITGO gas, from Venezuela. A gas we've come to love as the only kind you can buy in the US, that I know of, that isn't like putting blood money into your car. Shit. Shit. Shit. I feel this one. I am not happy with Sev today.
For today, just this, "hello," I won't give you a Franky Scale for today, I mean I'm about to swallow chemo drugs and I havn't even had my fucking coffee. (think the 1970s commercial for 7-Eleven coffee where the guy is driving to work in a convertable and he has a wolf face to all his neighbors and other commuters, UNTIL he gets his coffee at Sev...) It's me too. But yesterday was 6 to 7, backing up and down to each number. Got higher with the day however. After the marathon of travel from JFK to SEA-TAC two days ago, fogettaboutit.
Clear Pile of Shit award today: (after I unconsciously plugged them too! Goddam it.) the winner is 7-Eleven for deciding to stop selling CITGO gas, from Venezuela. A gas we've come to love as the only kind you can buy in the US, that I know of, that isn't like putting blood money into your car. Shit. Shit. Shit. I feel this one. I am not happy with Sev today.
Tuesday, September 26, 2006
9.26.06, New York's All Right, If You Like Saxophones...
Friday evening I arrive at JFK, meet the Disenchanted Princess, and am off to Long Island. There is the strange phenomenon of actually being able to sleep on planes now, and that’s the only unusual thing about my flight. Normal, sleepy, a single jump from Washington to New York.
As it turns out, this weekend was enchanted and surprises were in store. Saturday was to be a nice quiet night, just K and I going to dinner in the city and then to Birdland for Joe Lovano’s commemorative show on Coltrane’s 80th. K’s place is just an hour outside the city so we would probably just drive in, find one good parking spot, then use that as our HQ. Then K started asking how I’d feel about some additional plans for the city earlier on Sat, friends of hers, we could hang out, then change clothes there, go to dinner straightaway, about 6:30, etc., but lugging clothes, meeting new people (yes me being selfish about new people — candidly, it tires me out more that almost any other activity now), putting on my game face for so long, then the two of us having our night out, it began to swirl in advance. I knew I’d be too drained. And had been so looking forward to this show, and heading back to this restaurant, the Shark Bar.
Finally she ‘fessed up: we had a room at the Iriqouis, on 44th two doors down from the Algonquian. Great! Actually less stress, now time to stroll parts of the city, have a coffee in Bryant Park by the big public library branch. Ahh. Ms. K, however, continued to act strange, still, having said something to the bell boy under her breath, and that she wouldn’t relay to me! Sneaky, sneaky, sneaky. Going to our room, next, the bell boy opened the wrong room, some woman is lying in bed in there — now mortified! “Where the hell is our room? What is up, man?!” is what’s going through my head. This place seemed really nice, I didn’t get it, why the screw ups. Finally we’re in our room, but he’s got keys for the blond-in-her-bed’s room, so we’re out of luck. “I’ll be right back up with your room keys,” he says, still taking the tip that’s begrudgingly slipping from my hand, a question mark still in my eye.
Ten minutes later. There is a knock, they keys of course, so I go over and open the door. Holy shit! Who do I see but St. Francis, the blond from the bed, and some guy who's a cross between Frank O'Hara/James Bond pulling up the rear (turns out to be an old childhood friend of Frank’s, A.C. — just like in the O.J. chase). The hallways spins. What’s happening? The secret mumblings from K should’ve been the give away, but I didn’t want to be a schmuck and pry or demand to know a non-event. Then the knock from Frank killed me, he and 34DD giggling like kids, me stunned stupid and speechless, and all of it accentuated by A.C. since we’d never met before, & I’m in my shirtsleeves, as they say, etc. The dials on are the Franky Scale began to spin confusedly, reading out a series of “6” “4” “7” and “8” then “1’s” and “10’s” randomly. That is a pretty damn good surprise to pull off 3500 miles from home.
So it began. We talked, hung out a bit, took a fiver, got dressed, prepped a bit more in our rooms — then off! The Lovano show was excellent, and I think I’ll include a quick show review later for the music nerds out there. Lovano’s totally solid on the tenor, seems to work at channeling Coltrane, in his own way, and does succeed in recreating some of the same moves, transitions, and little licks. The double bass play, though, was incredible.
With that kind of night how could your Franky Scale be lower than an 8?
One realization struck me during the show, something I tried to pass on to everyone that night, but there seemed to be something untimely about it. At a few points in the show Lovano let the basses loose and the senior player Henry Grimes would let off into a game of follow the leader, so each instrument was in part echoing the other, throwing back to it additional riffs, turns, and interpretations. It’s hard to explain, but a phenomenal moment. And what I thought to myself was that such a musical moment is a place you could intentionally get lost, a place where all concern could fade away, a place to find yourself at the last and lonely instance. Despite its reality, that last instance isn’t popular parlor talk, so in our rooms after the show we kept it light, discussed the relative effectiveness of creating ichthyological metaphors to explain human uniqueness and beauty. Keep that word “relative” in mind.
* * *
P.S. — I don't know if I posted this info before but I upped my NCPB procedure date to the 29th, in the morning. It had been Oct. 2 but this way it'll be done right before moving, I'll have better company, and possibly the pain relief will come a few days sooner. So, Sept. 29, another endoscopic ultrasound procedure.
As it turns out, this weekend was enchanted and surprises were in store. Saturday was to be a nice quiet night, just K and I going to dinner in the city and then to Birdland for Joe Lovano’s commemorative show on Coltrane’s 80th. K’s place is just an hour outside the city so we would probably just drive in, find one good parking spot, then use that as our HQ. Then K started asking how I’d feel about some additional plans for the city earlier on Sat, friends of hers, we could hang out, then change clothes there, go to dinner straightaway, about 6:30, etc., but lugging clothes, meeting new people (yes me being selfish about new people — candidly, it tires me out more that almost any other activity now), putting on my game face for so long, then the two of us having our night out, it began to swirl in advance. I knew I’d be too drained. And had been so looking forward to this show, and heading back to this restaurant, the Shark Bar.
Finally she ‘fessed up: we had a room at the Iriqouis, on 44th two doors down from the Algonquian. Great! Actually less stress, now time to stroll parts of the city, have a coffee in Bryant Park by the big public library branch. Ahh. Ms. K, however, continued to act strange, still, having said something to the bell boy under her breath, and that she wouldn’t relay to me! Sneaky, sneaky, sneaky. Going to our room, next, the bell boy opened the wrong room, some woman is lying in bed in there — now mortified! “Where the hell is our room? What is up, man?!” is what’s going through my head. This place seemed really nice, I didn’t get it, why the screw ups. Finally we’re in our room, but he’s got keys for the blond-in-her-bed’s room, so we’re out of luck. “I’ll be right back up with your room keys,” he says, still taking the tip that’s begrudgingly slipping from my hand, a question mark still in my eye.
Ten minutes later. There is a knock, they keys of course, so I go over and open the door. Holy shit! Who do I see but St. Francis, the blond from the bed, and some guy who's a cross between Frank O'Hara/James Bond pulling up the rear (turns out to be an old childhood friend of Frank’s, A.C. — just like in the O.J. chase). The hallways spins. What’s happening? The secret mumblings from K should’ve been the give away, but I didn’t want to be a schmuck and pry or demand to know a non-event. Then the knock from Frank killed me, he and 34DD giggling like kids, me stunned stupid and speechless, and all of it accentuated by A.C. since we’d never met before, & I’m in my shirtsleeves, as they say, etc. The dials on are the Franky Scale began to spin confusedly, reading out a series of “6” “4” “7” and “8” then “1’s” and “10’s” randomly. That is a pretty damn good surprise to pull off 3500 miles from home.
So it began. We talked, hung out a bit, took a fiver, got dressed, prepped a bit more in our rooms — then off! The Lovano show was excellent, and I think I’ll include a quick show review later for the music nerds out there. Lovano’s totally solid on the tenor, seems to work at channeling Coltrane, in his own way, and does succeed in recreating some of the same moves, transitions, and little licks. The double bass play, though, was incredible.
With that kind of night how could your Franky Scale be lower than an 8?
One realization struck me during the show, something I tried to pass on to everyone that night, but there seemed to be something untimely about it. At a few points in the show Lovano let the basses loose and the senior player Henry Grimes would let off into a game of follow the leader, so each instrument was in part echoing the other, throwing back to it additional riffs, turns, and interpretations. It’s hard to explain, but a phenomenal moment. And what I thought to myself was that such a musical moment is a place you could intentionally get lost, a place where all concern could fade away, a place to find yourself at the last and lonely instance. Despite its reality, that last instance isn’t popular parlor talk, so in our rooms after the show we kept it light, discussed the relative effectiveness of creating ichthyological metaphors to explain human uniqueness and beauty. Keep that word “relative” in mind.
* * *
P.S. — I don't know if I posted this info before but I upped my NCPB procedure date to the 29th, in the morning. It had been Oct. 2 but this way it'll be done right before moving, I'll have better company, and possibly the pain relief will come a few days sooner. So, Sept. 29, another endoscopic ultrasound procedure.
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