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" . . .)
Saturday, November 04, 2006
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.
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