So, yes, I am well progressed on this unpleasant journey. There are no guarantees and this is not the only current journey in my life without any guarantees. In the "good old days" one walked up to the counter, paid the price, and walked away with reward in hand. No more. These days my career is medical procedures. Is it even worth it?
Long ago, in April of 2007 I became anemic, so I made an appointment with my doctor (scheduled four days later) and continued with my daily routines, work and all, until the day arrived. I was very weak, a condition I noticed after I had to lie down between taking my morning shower and getting dressed for the day. When I went upstairs I had to rest after the first flight of eight steps to catch my breath. When they told me that they could not see me until Wednesday morning I was a little skeptical about whether I would make it that long. "We will see", I told myself. Time went by. Wednesday arrived.
Everyone always wants me to go to the emergency room for this kind of thing. I am not so enthusiastic about the overblown expense and massive bureaucracy at the emergency room. I have another bureaucratic technique that I use sometimes when I think something is important and it is currently regular office hours. I show up in the doctor's office, inform them I am there, and ask them to "work me in". "Anytime in the next four hours will be just fine," I say. They urge me to go to the emergency room. I am so pleasant when I decline and seat myself to wait. Four hours is the same time it would take the emergency room to get to me. My doctor makes room for me much sooner.
In this case I was only feeling very very weak. I could feel the constant disco beat of my heart at 120 bps. Since then I know that is not unusual for me. I have well exceeded that with wildly irregular blood pressure and pulse rates during chemotherapy. (Their penalty is "hydration", which takes takes time and pushes the symptoms from one extreme to the other.)
Back in 2007, my doctor's blood tests came up on the low side, actually way on the low side, but there was a problem reaching the stomach doctor's office. I got in my car and continued onward to work. Just as well. My own doctor would have called an ambulance. Later that morning an assistant called me all but gasping with urgency. She instructed me to immediately call an ambulance, go to the hospital, and check myself into ICU.
That seemed silly to me since I had been driving myself everywhere for most of a week already. I got in the elevator and trudged out to the car at the other end of the parking lot. I drove to the hospital and finally found a parking spot. I trudged into admitting and announced my presence. They hustled me into a wheel chair and took me to ICU. I changed into uniform and sat in the bed while they hooked me up to all kinds of paraphernalia. Then they started the transfusions, one after another.
So now, eleven years later, my stomach is twitchy and my scar is itchy. It does not want for me to forget its suffering from the past. It does not like the chemo. My future is murky and I find myself wondering what my particular symptoms will be in the event of metastatic cancer? I speculate about what arrangements I should make for my family? Pointless speculation. I have made sensible arrangements already, years ago.
My mother always said that I was too sensitive. There are countless ways to be sensitive. One can have one's sense of justice outraged, either for oneself or for the helpless and vulnerable of the world. Fortunately, physical pain is not one of my great sensitivities, at least so says 23andme, and my experiences support that. I fear pain and I have experienced great pain, as in sciatica. That is the worst. I just know that I can find my way through it.
I am focused on some new projects this spring. I wonder about the cost/benefit equation for having these kinds of procedures done. My oncologist talks about another patient that is willing to be intubated, again, anything, so long as she can cling to life for another day or week. I will not be doing that. Aside from the suffering I would undergo, I will not inflict that suffering on those around me.
Monday, December 3, 2018
Sunday, November 11, 2018
Bible Thumpers
What does it mean if you find commercials in your messages from God? Is it worrisome if you find that you hold exactly the same point of view on a number of topics as a large number of other people? Do you worry that you have become a "ditto-head", or do you take pride in it?
My father was an early graduate of the Navy Postgraduate School in Monterey, California. Attendance at this school was a long deployment of three years so my mother started looking around to complete her social life by attending a local church. She had always attended the Congregational Church in her hometown of Hopkinton, Massachusetts so it was natural for her to choose the same denomination in Monterey.
She dressed up for church and showed up, only to find that she was lacking. At the start of the service all the members of the church were asked to hold up their bibles as a testament to their faith. Somehow, that had never been a part of what my mother always carried when she went to church, so she felt shamed and unwelcome. She never went back. She would sometimes refer to "bible thumpers" with disgust, at least for the first decade or so after that.
We lived in many places after that and every new home was accompanied by a search for a suitable church. When I was in high school I participated in those searches and she would accommodate my preferences, perhaps in hopes that I would continue to attend church with her after everyone else in the family had long since made it too unpleasant for her to force them to continue. We considered such important criteria as the quality of the music/choir, the comfort of the pews, and the level of inspiration of the sermons. Out of such things eventually is constructed deep and abiding faith - perhaps even rabid faith such as drove my mother away from that church in Monterey so many years before.
At the end of her life my mother would have been perfectly at home attending that church, forgiving their arrogance and their fetishes, dishing out love where there was pettiness. Church was always very important to her but I think sometimes that she was the true believer in those crowds, masquerading as an ordinary congregant. There, I will be arrogant about her faith where she could never be.
My father was an early graduate of the Navy Postgraduate School in Monterey, California. Attendance at this school was a long deployment of three years so my mother started looking around to complete her social life by attending a local church. She had always attended the Congregational Church in her hometown of Hopkinton, Massachusetts so it was natural for her to choose the same denomination in Monterey.
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| Herrmann Hall - U.S.. Naval Postgraduate School |
She dressed up for church and showed up, only to find that she was lacking. At the start of the service all the members of the church were asked to hold up their bibles as a testament to their faith. Somehow, that had never been a part of what my mother always carried when she went to church, so she felt shamed and unwelcome. She never went back. She would sometimes refer to "bible thumpers" with disgust, at least for the first decade or so after that.
We lived in many places after that and every new home was accompanied by a search for a suitable church. When I was in high school I participated in those searches and she would accommodate my preferences, perhaps in hopes that I would continue to attend church with her after everyone else in the family had long since made it too unpleasant for her to force them to continue. We considered such important criteria as the quality of the music/choir, the comfort of the pews, and the level of inspiration of the sermons. Out of such things eventually is constructed deep and abiding faith - perhaps even rabid faith such as drove my mother away from that church in Monterey so many years before.
At the end of her life my mother would have been perfectly at home attending that church, forgiving their arrogance and their fetishes, dishing out love where there was pettiness. Church was always very important to her but I think sometimes that she was the true believer in those crowds, masquerading as an ordinary congregant. There, I will be arrogant about her faith where she could never be.
Tuesday, November 6, 2018
The Light Within
Nothing that I possess, nothing that anyone has, is safe from loss. Even my love for my family could degenerate under the onslaught of disease and undermine everything that is most important to me. That is why, in my rather extensive internal conceptual framework, I cherish the most my love for the people around me and for the world in general - above everything else. The hope is that as every element of my mind is slowly dissolved away in some worst case scenario, the most strongly held foundations will hang on the longest. I want my love to be like the sun shining in the sky for billions of years - sometimes perhaps hidden by clouds but never to be doubted as to its reality.
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| The sun and Mount Fuji |
Sunday, October 28, 2018
Prayer
I overlook the reciprocity principle in this case since it is unlikely that I will ever pray for them. I have often thought that funerals are for the living. I suppose that I also believe that prayers are for the one who is praying. I know that the people doing the praying are fully aware of the benefits they receive - as illustrated by the phrase "not by my will but by Yours (God's)". My mother was not one who ever failed to provide commentary and often in her prayers she had specific wants and desires but yet the realization always was there: what was going to happen was up to God.
I have been witness to a lot of prayer. It is my failing that I have failed to witness miraculous results. Once, however, the Seahawks won the Superbowl.
So then, my failure to pray for others is probably an act of unkindness. Would it be better for me to pray knowing that I have extreme doubts about its efficacy? Such an act reeks of insincerity, hypocrisy even. It is the sort of act that I have often seen in religious people - where they are plainly doing something without faith, going through the motions because without that "they got nothing". I estimate that there are more opioid addicts than there are people with authentic prayers - people who are more than rote sock puppets.
The more I write, the deeper I enter the realms of unkindness. Beyond the unkindness, however, there is a deep sympathy for the condition where we all find ourselves enmeshed. If the internal pain and tears I experience when I see people suffering amounts to a prayer then maybe there is at least one authentic prayer being rendered for them.
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| James Tissot, Jesus Wept (Jésus pleura) |
A story: In my late twenties I worked as an orderly in the imaging department of a hospital. As orderly it was my duty to appear every Saturday morning and ease the task load of the technicians who had to work that morning. On one occasion I recall miscalculating how much alcohol I could drink and still work in the morning. I showed up in a state of suffering.
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| Bronze statue of Avalokiteśvara from Sri Lanka, ca. 750 CE |
I am not superstitious. I believe that I discovered something fundamental (oxytocin?) about what it means to be human. I specifically exclude the possibility that I was using my "aura" to suck energy away from my patients. There are some nasty memes out there.
Mahayana Buddhism has kinder memes. Avalokiteśvara is "he who hears the sound of the world". Among the Chinese he becomes a she, Kuan Yin the goddess of mercy. As a system of faith, Buddhism comes the closest to avoiding all superstition. They strongly believe in the power of prayer, to the point of automating the process endlessly with wheels and flags.
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| Chinese statue of Avalokiteśvara (Kuan Yin) looking out over the sea, c. 1025 CE |
I prefer to deny the possibility that superstition and "magic" leverage any part of the objective/real universe. It would be painful to discover that I have inadvertently hurt anyone. It has been painful when I have inadvertently hurt someone.
So tell me: If there is a prayer in the heart of the forest yet there is no heart present to make or hear that prayer - is there a prayer?
Electric Prayer Wheels
Thursday, October 25, 2018
Limitations (Things I Learned from Mother Boeing)
In the world of manufacturing there are three dimensions: "quality, speed, and price (pick two)". There are many more catch phrases than that of course. Everyone wants to make everything easy. Everyone is looking for the formula that will make them rich without effort. Every few years during my career a new initiative would come along. For a while we all got on the band wagon and each of us sponsored some improvement, greater or smaller. Often we got a t-shirt.
It was all part of the job and we all understood that any balking would result in a quick path to a stagnant career, or worse. I find that I am, once again, struck dumb with regard to any discussion of the details. My rather adequate memory would reveal all too much about the foibles of management in the large organization. One thing though is that they were trying and usually their intentions were good.
I genuinely love the Boeing Company. It is the whole foundation of a very good life that I have led. I literally cried when Boeing planes were used to bring down the NY Trade Towers. There is real pride in being part of a great enterprise that builds a great product.
One of the more consequential initiatives at Boeing was the introduction of "lean" disciplines into Boeing manufacturing systems. The entire workforce was required to attend extensive training in "lean" techniques and learn all the "lean" catch phrases. It changed the company forever. Various "powers that be" made or broke their careers on the shoals of "Lean". I could write many postings about my perceptions of what happened and how Boeing was affected by its particularly global enterprise and the mismatch between the dream and the reality of the Boeing supplier chains. I also sometimes reflect on the Amazonian reality that has reshaped our lives - on how it must inevitably be permeated with Lean thinking.
I drank the kool-aid. I still believe in the efficacy of Lean disciplines, not just in manufacturing but also potentially for the restructuring of our whole economic infrastructure. I spent a number of years, roughly between 1997 and 2007, promoting advanced transportation systems to streamline our economy and take us to the next level. I do not believe that "rock" moved one iota during the entire time I spent pushing on it. I decided to stop banging my head on that wall (mostly).
I have always wanted to "fix the world". I have never, however, just accepted any particular approach to fixing the world. Marxism, for instance, was not an ideology I could accept. Likewise, Capitalism is where we expect to find "death panels" and a lack of sympathy for the disadvantaged. Steering an eclectic course one has to expect opposition. Sometimes the opposition is unexpected, coming from someone who does not understand what you are trying to do. More often it is from established forces in our society such as unions and engineering consulting firms - an unexpected alliance if one does not consider history.
Entire books have been written about failure. These days I am mostly working on my garden. Over time, "my garden" is more the Lake Wilderness Arboretum and less my own plot of land. I have many times participated in the salvage of some special garden that would otherwise be extinguished by developers. I want the work that I do to extend beyond my own life into the indefinite future. I believe in cause and effect, especially subtle effects, so I know that my life is not meaningless. I do not need eternal life or salvation. I do not even need to see and understand the eventual outcome.
My own garden will one day fall under development, nor do I have the resources to endow it for any lengthy period of time into the future. Some rich people do that, creating smaller or greater plots of acreage that will preserve a memory of a life style their children knew growing up, but which will never adequately serve the needs of species conservation or even of horticultural achievement.
Sadly, I am not being kind now. It is time for me to quit.
It was all part of the job and we all understood that any balking would result in a quick path to a stagnant career, or worse. I find that I am, once again, struck dumb with regard to any discussion of the details. My rather adequate memory would reveal all too much about the foibles of management in the large organization. One thing though is that they were trying and usually their intentions were good.
I genuinely love the Boeing Company. It is the whole foundation of a very good life that I have led. I literally cried when Boeing planes were used to bring down the NY Trade Towers. There is real pride in being part of a great enterprise that builds a great product.
One of the more consequential initiatives at Boeing was the introduction of "lean" disciplines into Boeing manufacturing systems. The entire workforce was required to attend extensive training in "lean" techniques and learn all the "lean" catch phrases. It changed the company forever. Various "powers that be" made or broke their careers on the shoals of "Lean". I could write many postings about my perceptions of what happened and how Boeing was affected by its particularly global enterprise and the mismatch between the dream and the reality of the Boeing supplier chains. I also sometimes reflect on the Amazonian reality that has reshaped our lives - on how it must inevitably be permeated with Lean thinking.
I drank the kool-aid. I still believe in the efficacy of Lean disciplines, not just in manufacturing but also potentially for the restructuring of our whole economic infrastructure. I spent a number of years, roughly between 1997 and 2007, promoting advanced transportation systems to streamline our economy and take us to the next level. I do not believe that "rock" moved one iota during the entire time I spent pushing on it. I decided to stop banging my head on that wall (mostly).
I have always wanted to "fix the world". I have never, however, just accepted any particular approach to fixing the world. Marxism, for instance, was not an ideology I could accept. Likewise, Capitalism is where we expect to find "death panels" and a lack of sympathy for the disadvantaged. Steering an eclectic course one has to expect opposition. Sometimes the opposition is unexpected, coming from someone who does not understand what you are trying to do. More often it is from established forces in our society such as unions and engineering consulting firms - an unexpected alliance if one does not consider history.
Entire books have been written about failure. These days I am mostly working on my garden. Over time, "my garden" is more the Lake Wilderness Arboretum and less my own plot of land. I have many times participated in the salvage of some special garden that would otherwise be extinguished by developers. I want the work that I do to extend beyond my own life into the indefinite future. I believe in cause and effect, especially subtle effects, so I know that my life is not meaningless. I do not need eternal life or salvation. I do not even need to see and understand the eventual outcome.
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| https://forums.botanicalgarden.ubc.ca/threads/magnolia-campbellii-subsp-mollicomata-lanarth.441/ |
My own garden will one day fall under development, nor do I have the resources to endow it for any lengthy period of time into the future. Some rich people do that, creating smaller or greater plots of acreage that will preserve a memory of a life style their children knew growing up, but which will never adequately serve the needs of species conservation or even of horticultural achievement.
Sadly, I am not being kind now. It is time for me to quit.
Wednesday, October 24, 2018
Status/Weather Report
Last Thursday my surgeon called at 6:30 PM while I was lying on the couch. It was the second day of my second cycle of chemo yet I was feeling pretty good and planning to attend the board meeting of my HOA. I am so proud of the board of my HOA. They have all stepped up to lift the load off of me since I came down with cancer. That is important because I am president. I am trying to carry on while also using this as an exercise in managing the continuity of the organization.
Dr. Dash is a urologist and he is planning to perform major surgery on me in early January. He already called me one other time and now we are like "old friends". He has now scheduled another cystoscopy on November 13th to remove the stents from my ureters. He agrees with Dr. Wright that having two stents is a sign that my disease is "clinically" T-3 rather than T-2. This is not a problem for me since I worship the truth, whatever that may turn out to be.
November 13th will the final day of my third chemo cycle, the final cycle commencing on the 14th. The second cycle was more tiring than the first. I am learning to deal with these ups and downs. I went on a spending binge recently so $600 worth of plants were delivered to the house today. I will take them to the arboretum in the morning to be unpacked and repotted.
I think that I will be having another CT scan soon. My oncologist is concerned that I may develop active TB since there are minor scars in my lungs - perhaps from 65 years ago when my mother had a Christian Science friend who died of TB. Mom said that we all have positive TB tests. That may be the reason. It is the possible reason that she named. There is also the fact that Dad's mother died of TB. Grandma Murphy's TB, though, was supposed to be bovine TB - caught from the family milking cow while they were in Peace River, Alberta homesteading.
I have daily granix shots for two more days then five days resting before it all starts again. I will have December off completely. There has been no recurrence of the pain from that one granix shot. I have a big bruise from that shot so something went wrong that time.
I need to start up the lights in the garage and move all my tender plants out of the weather. I have taken a few pictures over the last few days. No frost is predicted in the next ten days.
Dr. Dash is a urologist and he is planning to perform major surgery on me in early January. He already called me one other time and now we are like "old friends". He has now scheduled another cystoscopy on November 13th to remove the stents from my ureters. He agrees with Dr. Wright that having two stents is a sign that my disease is "clinically" T-3 rather than T-2. This is not a problem for me since I worship the truth, whatever that may turn out to be.
November 13th will the final day of my third chemo cycle, the final cycle commencing on the 14th. The second cycle was more tiring than the first. I am learning to deal with these ups and downs. I went on a spending binge recently so $600 worth of plants were delivered to the house today. I will take them to the arboretum in the morning to be unpacked and repotted.
I think that I will be having another CT scan soon. My oncologist is concerned that I may develop active TB since there are minor scars in my lungs - perhaps from 65 years ago when my mother had a Christian Science friend who died of TB. Mom said that we all have positive TB tests. That may be the reason. It is the possible reason that she named. There is also the fact that Dad's mother died of TB. Grandma Murphy's TB, though, was supposed to be bovine TB - caught from the family milking cow while they were in Peace River, Alberta homesteading.
I have daily granix shots for two more days then five days resting before it all starts again. I will have December off completely. There has been no recurrence of the pain from that one granix shot. I have a big bruise from that shot so something went wrong that time.
I need to start up the lights in the garage and move all my tender plants out of the weather. I have taken a few pictures over the last few days. No frost is predicted in the next ten days.
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| Weeping Maple Fall Color |
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| Angel's Trumpet |
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| Rhododendron 'Aleksandr Isayevich' |
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| Hostas shedding leaves. 'Halcyon' is running late. 'Frances Williams' is gone. |
Sunday, October 21, 2018
Some Music
Music has always been important to me. I treat music like everything else so it turns out that I am not so important to music. I was never going to appear in Carnegie Hall the way my cello teacher in Santa Clara suggested I might want, as I was leaving the last time that I saw him. I heard that he died only a short time later from Hong Kong flu. I do not have perfect pitch. Over the years I have developed ringing in my ears, which I am able to ignore.
I cannot share music as I might like in this blog so I will make this relatively simple. For me, the music that I know forms a pattern in my mind. Like most people music eventually fades into a kind of boredom where I do not want to hear it anymore. In some cases I use music as an index into my (associative) memory. When a memory is special the associated music becomes special, often for silly or childish reasons.
In the book, "Nine Princes in Amber", there is a pattern written in the floor in a room in the palace in Amber, just as there is also an identical pattern written in a floor in the sub-sea palace in Rebma. One who is "of the blood" of Amber can walk the pattern and receive the gift of walking all the patterns of all the alternate universes in that fantasy.
Here is a pattern, a sonata, that I sometimes play while waiting for sleep, to restore order in my mind and to restore purpose. In the third version the artist is very "declarative" and the music is rendered without any human failings and without the need to "push through" barriers. I go to another version for all of that (the first cut), when I need to feel a little more hope. With Depeche Mode the arpeggios are just that. Alternations in the first cut make them more melodic. The other versions are probably best seen as corrupt, but in the end it is all art.
I cannot share music as I might like in this blog so I will make this relatively simple. For me, the music that I know forms a pattern in my mind. Like most people music eventually fades into a kind of boredom where I do not want to hear it anymore. In some cases I use music as an index into my (associative) memory. When a memory is special the associated music becomes special, often for silly or childish reasons.
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| https://www.theverge.com/2016/7/20/12242806/chronicle-of-amber-tv-adaptation-robert-kirkman-skybound |
Here is a pattern, a sonata, that I sometimes play while waiting for sleep, to restore order in my mind and to restore purpose. In the third version the artist is very "declarative" and the music is rendered without any human failings and without the need to "push through" barriers. I go to another version for all of that (the first cut), when I need to feel a little more hope. With Depeche Mode the arpeggios are just that. Alternations in the first cut make them more melodic. The other versions are probably best seen as corrupt, but in the end it is all art.
Wednesday, October 17, 2018
Rationalizing
Today I started my second round of chemotherapy. Before hand I had a consultation with my oncologist.
From the beginning, I was offered a choice to have either chemotherapy plus radiation therapy or else chemotherapy plus surgery to remove my bladder+prostate. The second alternative (which is not offered to the very old or weak) is the recommended one. There is never the possibility of a "total cure" with radiation therapy since suspect tissues are left in place. Also, there is "scarring" with radiation therapy.
Many years ago my father (now 96 years old) had lymphoma. I do not know all the details of his treatment, other than that it was effective. I believe that there was radiation therapy and I have seen the mass of scars on his belly. Those scars became infected on Christmas Day the last time he came up for Christmas (a number of years ago). He and I had some quality time in the emergency room at Valley Medical that day.
Angelina Jolie famously had a preventative double mastectomy. It would seem to take great faith in modern medicine to take those kinds of steps. I find that I too, in the end took the doctors' best advice seriously. I will now be able to join some of my elderly friends in an informal competition to see who can live and prosper with the smallest number of "unnecessary" organs.
I conducted a search of the Internet for a list of all organs unneeded to sustain life but the lists that came up were more "off the wall" than comprehensive. Neither the bladder nor the prostate made the lists. I am holding out for an actual vital social (rather than sexual) function for the vomeronasal organ.
Fun "bunny trail"(digression): The Flehmen Response
The "Infusion" RNs started with a round of blood tests to make sure that my liver and kidney functions were up to the challenge. My oncologist is more worried about my kidneys so she has warned me away from Ibuprophen in favor of acetaminophen or even percocet. Fine.
There were interesting protocols (liturgy) surrounding the administration of the chemotherapy. After the blood test results were approved the drugs were ordered from the pharmacy. The drugs were sent across the hospital via pneumatic tubes. They were checked and scanned in with a cross scan of my wrist band. Then a second RN double-checked the array of drugs against those that were ordered and signed off on them, once again scanning both the drug labels and my wrist band. I was shown the list of drugs and the pile of IV bags and asked to approve them, just as if I could actually pass judgment on the actions of medical professionals. I scanned the list and it all looked as I expected it to look so, of course, the sock puppet approved it. I have now been through this ritual three times.
As usual, I slept through most of the infusions of various chemicals into my body. I felt drowsiness overcoming me from the moment I walked into the treatment room with Barb, so it was not anything medical involved. Since working graveyard shift I find that I can fall asleep at will in certain situations. Visiting in-laws... Waiting for dinner... Receiving infusions...
We got out around 5:00 PM for a total duration of about 6 hours of infusions. Barb and I went to Ivar's for Alaskan Cod and chips for dinner. We both added cole slaw sides to our orders and I added a small cherry Coke. I ate my whole dinner. Since then I have added a glass of cranberry juice and a root-beer float to my intake. Part of the infusion is 1.5 liters of saline so there has been a couple of trips to the bathroom for extended "leak" sessions. I have had a slight headache since my session at the Infusion Center but I medicated that and feel pretty good now.
Speaking of the Infusion Center, there is a giant crater in the center of the Valley Medical hospital complex where the new Cancer Center will consolidate various departments from all over the campus (and elsewhere?). Cancer is big these days and possibly even profitable to some. Valley Medical is now a part of UW Medicine so in theory it is part of a top-of-the-line medical institution. I suspect that the Cancer Center is part of a large UW Medicine development plan. We have encountered some commuter traffic around Valley Med but nothing like exists on the freeways around Seattle and Bellevue. Alan's commute was taking as much as two hours each way to commute to a job at Puget Sound Energy in Bellevue. Then there is the parking.
I visited the Seattle Cancer Care Alliance and UW Medicine when I went to get my second opinions on diagnosis and treatment. They refused to tell me that I was perfectly well and needed no further medical treatment (ha, ha). In fact, the UW urologist rated my cancer at "clinically" T-3, instead of the usual consensus that I am T-2. Faith is one of the virtues around which this blog revolves. I am being perfectly rational. I am playing the odds. I am using faith in accepting the judgements of my medical experts. They told me that my treatment at Valley Med would be exactly the same as what I would receive at the SCCA. My surgery will take place at the "surgery pavilion" at UW Medicine, so even that has similarities.
The traffic and parking at the SCCA and UW Medicine are stressful and cost money. I am glad not to have to make that trip every day.
It is a really good thing that I am fully ambulatory. Everywhere I go there is a lot of walking.
From the beginning, I was offered a choice to have either chemotherapy plus radiation therapy or else chemotherapy plus surgery to remove my bladder+prostate. The second alternative (which is not offered to the very old or weak) is the recommended one. There is never the possibility of a "total cure" with radiation therapy since suspect tissues are left in place. Also, there is "scarring" with radiation therapy.
Many years ago my father (now 96 years old) had lymphoma. I do not know all the details of his treatment, other than that it was effective. I believe that there was radiation therapy and I have seen the mass of scars on his belly. Those scars became infected on Christmas Day the last time he came up for Christmas (a number of years ago). He and I had some quality time in the emergency room at Valley Medical that day.
Angelina Jolie famously had a preventative double mastectomy. It would seem to take great faith in modern medicine to take those kinds of steps. I find that I too, in the end took the doctors' best advice seriously. I will now be able to join some of my elderly friends in an informal competition to see who can live and prosper with the smallest number of "unnecessary" organs.
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| New Forest Pony, Dorset |
Fun "bunny trail"(digression): The Flehmen Response
The "Infusion" RNs started with a round of blood tests to make sure that my liver and kidney functions were up to the challenge. My oncologist is more worried about my kidneys so she has warned me away from Ibuprophen in favor of acetaminophen or even percocet. Fine.
There were interesting protocols (liturgy) surrounding the administration of the chemotherapy. After the blood test results were approved the drugs were ordered from the pharmacy. The drugs were sent across the hospital via pneumatic tubes. They were checked and scanned in with a cross scan of my wrist band. Then a second RN double-checked the array of drugs against those that were ordered and signed off on them, once again scanning both the drug labels and my wrist band. I was shown the list of drugs and the pile of IV bags and asked to approve them, just as if I could actually pass judgment on the actions of medical professionals. I scanned the list and it all looked as I expected it to look so, of course, the sock puppet approved it. I have now been through this ritual three times.
As usual, I slept through most of the infusions of various chemicals into my body. I felt drowsiness overcoming me from the moment I walked into the treatment room with Barb, so it was not anything medical involved. Since working graveyard shift I find that I can fall asleep at will in certain situations. Visiting in-laws... Waiting for dinner... Receiving infusions...
We got out around 5:00 PM for a total duration of about 6 hours of infusions. Barb and I went to Ivar's for Alaskan Cod and chips for dinner. We both added cole slaw sides to our orders and I added a small cherry Coke. I ate my whole dinner. Since then I have added a glass of cranberry juice and a root-beer float to my intake. Part of the infusion is 1.5 liters of saline so there has been a couple of trips to the bathroom for extended "leak" sessions. I have had a slight headache since my session at the Infusion Center but I medicated that and feel pretty good now.
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| Valley Med Cancer Center under Construction |
I visited the Seattle Cancer Care Alliance and UW Medicine when I went to get my second opinions on diagnosis and treatment. They refused to tell me that I was perfectly well and needed no further medical treatment (ha, ha). In fact, the UW urologist rated my cancer at "clinically" T-3, instead of the usual consensus that I am T-2. Faith is one of the virtues around which this blog revolves. I am being perfectly rational. I am playing the odds. I am using faith in accepting the judgements of my medical experts. They told me that my treatment at Valley Med would be exactly the same as what I would receive at the SCCA. My surgery will take place at the "surgery pavilion" at UW Medicine, so even that has similarities.
The traffic and parking at the SCCA and UW Medicine are stressful and cost money. I am glad not to have to make that trip every day.
It is a really good thing that I am fully ambulatory. Everywhere I go there is a lot of walking.
Sunday, October 14, 2018
Conceptual Frameworks
I have been inflicting my thoughts on my children for many years. I know the exact age at which a child will sit still [evening after evening] while one reads the entirety of The Hobbit + The Lord of the Rings to them. It is a just part of the literary ballast that is tucked away in my subconscious. It is a significant part because I am sure I have read the whole thing solo about a dozen times.
In other cases I gave them books to read. There was never much discussion about it. They always preferred to choose their own reading material, which did not overlap with mine. I believe that they read all those loaned stories anyway.
I have always had an irrational love of books. Above you can see the final and current size of my hard-copy science fiction and fantasy collection. I estimate that it is about one third of the books in the house. It was gathered over many years and carried around from place to place until 1987 when it arrived in its current location. You can only see half of them because the shelves are deep enough for two rows of books. They are arranged alphabetically by author. I have read all of these books and if you select any of them at random I will be able to say something about each one. The collection has not grown significantly for at least twenty years. In 1997 I stepped outward and away into a more actively involved participation in the world.
Michael says that it is interesting how certain stories always come up when we talk. He has read them all yet they are only a very small part of the total stored away in my head. I would say that there is about half a dozen of them. I have put a list of them at the end of this posting.
Tolkein, of course, goes without saying. I do not have to explain Tolkein everywhere I go.
The first story in the list is first because it specifically relates to what I am doing in this blog. I am explaining what I do. The Goblin Mirror is a symbol for what I do in the world. I take stories and fantasies and work to transform them into reality. It is beyond my ability to explain how this magical process relates to a conceptual definition of magic. I do know that the most basic element of magic is the wish. Anyone can make a wish and they do so at their hazard. In Eastern theology all suffering is preceded by desire. Paraphrased: "When you want something, that is when the trouble starts."
Many of the characters in The Goblin Mirror are self-admitted sock puppets. Their fate is fixed and their wishes may or may not fit into the narrative that is dictated by the mirror. Others originate stories and visions, fighting to make them come true. It may be that ultimately no one has a choice. Perhaps all our fates are fixed within a narrative that we may not know.
In other cases I gave them books to read. There was never much discussion about it. They always preferred to choose their own reading material, which did not overlap with mine. I believe that they read all those loaned stories anyway.
I have always had an irrational love of books. Above you can see the final and current size of my hard-copy science fiction and fantasy collection. I estimate that it is about one third of the books in the house. It was gathered over many years and carried around from place to place until 1987 when it arrived in its current location. You can only see half of them because the shelves are deep enough for two rows of books. They are arranged alphabetically by author. I have read all of these books and if you select any of them at random I will be able to say something about each one. The collection has not grown significantly for at least twenty years. In 1997 I stepped outward and away into a more actively involved participation in the world.
Michael says that it is interesting how certain stories always come up when we talk. He has read them all yet they are only a very small part of the total stored away in my head. I would say that there is about half a dozen of them. I have put a list of them at the end of this posting.
Tolkein, of course, goes without saying. I do not have to explain Tolkein everywhere I go.
The first story in the list is first because it specifically relates to what I am doing in this blog. I am explaining what I do. The Goblin Mirror is a symbol for what I do in the world. I take stories and fantasies and work to transform them into reality. It is beyond my ability to explain how this magical process relates to a conceptual definition of magic. I do know that the most basic element of magic is the wish. Anyone can make a wish and they do so at their hazard. In Eastern theology all suffering is preceded by desire. Paraphrased: "When you want something, that is when the trouble starts."
Many of the characters in The Goblin Mirror are self-admitted sock puppets. Their fate is fixed and their wishes may or may not fit into the narrative that is dictated by the mirror. Others originate stories and visions, fighting to make them come true. It may be that ultimately no one has a choice. Perhaps all our fates are fixed within a narrative that we may not know.
- The Goblin Mirror by C.J. Cherryh
- Casey Agonistes by Richard McKenna
- Arrive at Easterwine by R.A. Lafferty
- Serpents Reach by C.J. Cherryh
- Tales of the Flat Earth by Tanith Lee
- Traveler in Black by John Brunner
Saturday, October 13, 2018
My First Cyctoscopy
How does one discover that one has cancer? It is not like a traffic accident. It always lurks around the corner but it hides in unlikely places in the body. Some forms of cancer have no obvious outward symptoms, aside from a tendency to kill.
In my case I discovered blood in my urine. My urine had been dark for a while but suddenly it was unmistakably red. I mentioned this to my doctor at my regular annual physical a couple of weeks later. He would have found it in the urinalysis anyway. He referred me to a urologist and ordered a CT scan. This was about the time that I went to California for Dad's birthday.
The urologist could not see anything on the CT scan so he ordered another CT scan "with contrast". He also scheduled me for a cystoscopy about a month later. Things changed when the results from the second CT scan came back, plus some blood tests that indicated failing kidney function. He moved up the cyctoscopy to a week out and made it general anesthesia instead of local. There was no discussion but I could feel aching in my back from back pressure on my ureters. By the time the day arrived I was in real pain yet not quite sure what was happening. I was incontinent, running to the bathroom every hour or so, and experiencing those weird sensations such as only a partially obstructed urethral sphincter can inflict.
On one occasion I passed a small chunk of what I now realize was a piece of the tumor. I offered to bring it in but no one was interested. "We will take our own samples," they said.
In the pre-op interview I was informed that I had a tumor in my bladder and that all the other things in the first CT scan were irrelevant: the kidney stone, the gall bladder stone, ... They were not sure of the tumor size because the "with contrast" was not as contrasty as they would have liked. In the interview with the anesthesiologist (he was good and quite thorough) I let it be known that I wake up from anesthesia slowly. Funny things happen. I have funny dreams.
The tumor turned out to be quite large.
When I woke up I had an overpowering need to pee. So I started to get up to go find the bathroom. Four people jumped on me and held me down. I tested their strength and realized they were only women. Nevertheless, I relaxed and announced that I needed to pee. "You can't", I was told, "You have a foley."
So then I had to set aside my qualms about peeing in bed and start pushing out this massive amount of liquid that they left inside me. I had some success/relief, everyone relaxed and the party resumed.
The tumor occupied a significant part of my bladder's volume. It was attached at the base of the bladder where all the plumbing (two ureters and one urethra) come together. Naturally it was obstructing everything at least partially. My right ureter was almost completely obstructed and it was working on my left one. The urologist went in without either an incision or stitches and cleaned me out. He also put stents in my ureters. Everything was working fine after that. I went home that evening - me and the damned foley.
In my case I discovered blood in my urine. My urine had been dark for a while but suddenly it was unmistakably red. I mentioned this to my doctor at my regular annual physical a couple of weeks later. He would have found it in the urinalysis anyway. He referred me to a urologist and ordered a CT scan. This was about the time that I went to California for Dad's birthday.
The urologist could not see anything on the CT scan so he ordered another CT scan "with contrast". He also scheduled me for a cystoscopy about a month later. Things changed when the results from the second CT scan came back, plus some blood tests that indicated failing kidney function. He moved up the cyctoscopy to a week out and made it general anesthesia instead of local. There was no discussion but I could feel aching in my back from back pressure on my ureters. By the time the day arrived I was in real pain yet not quite sure what was happening. I was incontinent, running to the bathroom every hour or so, and experiencing those weird sensations such as only a partially obstructed urethral sphincter can inflict.
On one occasion I passed a small chunk of what I now realize was a piece of the tumor. I offered to bring it in but no one was interested. "We will take our own samples," they said.
In the pre-op interview I was informed that I had a tumor in my bladder and that all the other things in the first CT scan were irrelevant: the kidney stone, the gall bladder stone, ... They were not sure of the tumor size because the "with contrast" was not as contrasty as they would have liked. In the interview with the anesthesiologist (he was good and quite thorough) I let it be known that I wake up from anesthesia slowly. Funny things happen. I have funny dreams.
The tumor turned out to be quite large.
When I woke up I had an overpowering need to pee. So I started to get up to go find the bathroom. Four people jumped on me and held me down. I tested their strength and realized they were only women. Nevertheless, I relaxed and announced that I needed to pee. "You can't", I was told, "You have a foley."
So then I had to set aside my qualms about peeing in bed and start pushing out this massive amount of liquid that they left inside me. I had some success/relief, everyone relaxed and the party resumed.
The tumor occupied a significant part of my bladder's volume. It was attached at the base of the bladder where all the plumbing (two ureters and one urethra) come together. Naturally it was obstructing everything at least partially. My right ureter was almost completely obstructed and it was working on my left one. The urologist went in without either an incision or stitches and cleaned me out. He also put stents in my ureters. Everything was working fine after that. I went home that evening - me and the damned foley.
The Search for: What?
Many people hasten to discard all the most important facets of their lives. My situation is not a lot more dire than the situation of many people around me, yet I am still rethinking and reassessing my life. It is what a good sock puppet is expected to do when it has cancer.
Once again alluding to the heritage of my loquacious mother, there is no practical limit to the endless detail that I could pass along in these brief messages. It is all endlessly interesting to me, of course, because it is all about me. I created this blog to isolate my blather and my egoism from sensible people everywhere. "Endless detail" is how I refer to what I perceive as the miracle of the reality that we occupy. The moss on the north side of the tree, the rhododendrons on the north side of the mountain, countless subtle and beautiful effects with deep roots in cause and effect.
The classic example of what people are willing to sacrifice from their lives is the trade-off between security and freedom. Here is a discussion of that famous quote by Benjamin Franklin: https://www.lawfareblog.com/what-ben-franklin-really-said. So the question we face is "what is essential security?" Franklin clearly saw it as relying on effective self-government. Just having a gun does not effectively protect anyone from the looming political forces at work around us.
When traveling in India I saw chickens everywhere I went. I never saw them, however, alongside the road when away from settlements. Chickens are eaten everywhere in large quantities but not, it seems as much as they are eaten when living alone in the wilderness. One might reasonably say that chickens long ago traded their difficult freedom for the security of being a staple of the human diet. At some point I will have more to say about the collective futures of our food animals. For now I am focused on me.
My beliefs have developed slowly over many years. I can almost remember each development year by year over a period of fifty years. In my twenties I developed an esoteric vocabulary to articulate the more attainable elements of ineffable reality. In my thirties I came to a realization of my commitment to always believe the truth, without trivializing the difficulty of that commitment. In my forties I became aware of the "two seas" and embraced a mystical view of God, while also struggling with my role as a parent. Since my fifties I have been meditating on the nature of meaning - how it is caught up in the search for the truth and how there is always a moment when it seems more precious than life itself.
I Died for Beauty - Emily Dickinson
If you think that this is weird ("Run!!!" screams Dr. Who) then I am warning you to beware of what lies ahead.
Once again alluding to the heritage of my loquacious mother, there is no practical limit to the endless detail that I could pass along in these brief messages. It is all endlessly interesting to me, of course, because it is all about me. I created this blog to isolate my blather and my egoism from sensible people everywhere. "Endless detail" is how I refer to what I perceive as the miracle of the reality that we occupy. The moss on the north side of the tree, the rhododendrons on the north side of the mountain, countless subtle and beautiful effects with deep roots in cause and effect.
The classic example of what people are willing to sacrifice from their lives is the trade-off between security and freedom. Here is a discussion of that famous quote by Benjamin Franklin: https://www.lawfareblog.com/what-ben-franklin-really-said. So the question we face is "what is essential security?" Franklin clearly saw it as relying on effective self-government. Just having a gun does not effectively protect anyone from the looming political forces at work around us.
When traveling in India I saw chickens everywhere I went. I never saw them, however, alongside the road when away from settlements. Chickens are eaten everywhere in large quantities but not, it seems as much as they are eaten when living alone in the wilderness. One might reasonably say that chickens long ago traded their difficult freedom for the security of being a staple of the human diet. At some point I will have more to say about the collective futures of our food animals. For now I am focused on me.
My beliefs have developed slowly over many years. I can almost remember each development year by year over a period of fifty years. In my twenties I developed an esoteric vocabulary to articulate the more attainable elements of ineffable reality. In my thirties I came to a realization of my commitment to always believe the truth, without trivializing the difficulty of that commitment. In my forties I became aware of the "two seas" and embraced a mystical view of God, while also struggling with my role as a parent. Since my fifties I have been meditating on the nature of meaning - how it is caught up in the search for the truth and how there is always a moment when it seems more precious than life itself.I Died for Beauty - Emily Dickinson
If you think that this is weird ("Run!!!" screams Dr. Who) then I am warning you to beware of what lies ahead.
Granix Gone Bad
Last Friday I got my final granix shot of the first chemotherapy cycle. This is my first cycle of four and it started on Wednesday, October 3rd. I had a little aching in my lower back after the first granix shot on October 5th. Since then there has been no issues with pain, not until the last shot.
I am pretty sure that we all are connoisseurs of pain. The tapestry of the meanings of our lives is stitched together from moments of greater or lesser pain or pleasure, among other things. Thursday evening I started to feel a little aching in my lower back, which quickly became a throbbing sensation. By the time I went to bed I was getting spasms in my back. When I got up to get some painkiller it had become severe cramping verging on sciatica.
Since there was getting to be classic nerve pain I deduce that this was from inflammation. Probably an NSAID will be my drug of choice in the future, when this recurs. I have to receive seven granix shots in every cycle of chemotherapy. The shot is a steroid delivered subcutaneously that stimulates the production of white blood cells. I am told that much of the bone marrow involved resides in the lower back.
Determining cause and effect relationships when deciphering the symptoms of the body is a lot like reading a Rorschach blot - and with a similar degree of subjective bias. Medical expertise and experience is a huge help. I am considering the possibility that last Thursday I was finally fully hydrated with the assistance of some electrolyte packets that made water finally taste good. Either the electrolytes or the hydration enabled the severe pain from the granix stimulation. That, however, is all speculation. Time will tell.
I am pretty sure that we all are connoisseurs of pain. The tapestry of the meanings of our lives is stitched together from moments of greater or lesser pain or pleasure, among other things. Thursday evening I started to feel a little aching in my lower back, which quickly became a throbbing sensation. By the time I went to bed I was getting spasms in my back. When I got up to get some painkiller it had become severe cramping verging on sciatica.
Since there was getting to be classic nerve pain I deduce that this was from inflammation. Probably an NSAID will be my drug of choice in the future, when this recurs. I have to receive seven granix shots in every cycle of chemotherapy. The shot is a steroid delivered subcutaneously that stimulates the production of white blood cells. I am told that much of the bone marrow involved resides in the lower back.Determining cause and effect relationships when deciphering the symptoms of the body is a lot like reading a Rorschach blot - and with a similar degree of subjective bias. Medical expertise and experience is a huge help. I am considering the possibility that last Thursday I was finally fully hydrated with the assistance of some electrolyte packets that made water finally taste good. Either the electrolytes or the hydration enabled the severe pain from the granix stimulation. That, however, is all speculation. Time will tell.
Friday, October 12, 2018
The "Port"
Two weeks ago I went as an outpatient to the hospital to have my "port" installed. They put a tube into my jugular vein and threaded it down in my chest to a point just above the vena cava. They used a combination of local anesthesia and fentanyl.Yes. That fentanyl. I watched unquestioning while they pushed the contents of a 20 cc syringe into the iv in my left arm. I was reflecting on all that I had read about fentanyl and the opioid overdose epidemic. I never lost consciousness so they certainly knew their dilution factors and their dosages. Here is one of the stories / statistics that was in my mind:
https://www.cnn.com/2017/10/29/health/opioid-fentanyl-childhood-friends/index.html
The OR staff draped a flap of blanket over my head so that I could not smile into their eyes while they cut into me. Then they installed a self-healing silicone disk under my skin for repeated infusions of various witch's brews. I offered to "philosophize" but they declined, so I just lay there listening to their conversation, feeling little tugs, and also feeling the spider tickle of the tube threading through my jugular to a larger more suitable blood vessel. I knew when they were satisfied... that it was in place. I felt more little tugs as they sewed me up.
I am like my mother in that I will talk to strangers about pretty much anything. I have heard the stories about "ports", how sometimes they will be removed a year later and other times they join the remnants of the body in its eventual fate. Not everyone who knows me likes me. They all have a story to tell and I accept all input without too much push-back. Some people criticize my choice of medical centers. Maybe they are right. Maybe not. I try to be kind even when people are not kind to me. Kindness is not something to take for granted.
The Special Procedures staff took me back to the room where Barb was waiting. She remarked that I did not seem disoriented at all. From previous hospital stays I know that I can play some of my best "Jeopardy" while on opioids. The answers just seem to flow without effort.
Defensive, Are We?
Over the years I have taken an interest in various forms of the religious experience. One of my undergraduate sociology classes was focused on assigning world religions to their various social niches. More recently the fundraising program I took at the UW alluded to the special skills that churches exercise over their congregations.
But never mind about all that. The outcome of my research and meditations was that I sometimes considered writing a book entitled "One Thousand and One Definitions of God". I have grown to be much less judgmental over the years but I still wonder at all the devout people in the world who have no workable definition of God. Instead they point at anything around them that strikes their fancy or seems unusual and use that as a example of God at work.
I am as bad as the rest of you. I have a constant awareness of God's presence around me, working in all possible ways, mysterious or otherwise. If that bothers you then I suggest that you follow the succinct advice offered by Dr. Who in moments of crisis: "Run!!!".
In this blog I have selected one definition of God to use as my own personal blog conceit: "God is the unseen hand operating behind every human being / sock puppet in the world." I can prove this in various ways, starting with the the outrage most people will feel on being told they are merely God's sock puppet. This is roughly at the same level as the outrage people feel on being told they are descended from apes. The only cure is Christian humility.
The evidence for these unpleasant truths, however, is there. Just read the newspapers. Have I mentioned that God must inevitably have a colossal sense of humor? It stands to reason although reason is out of favor with the devout. For that matter, the devout do not have much of a sense of humor.
But never mind about all that. The outcome of my research and meditations was that I sometimes considered writing a book entitled "One Thousand and One Definitions of God". I have grown to be much less judgmental over the years but I still wonder at all the devout people in the world who have no workable definition of God. Instead they point at anything around them that strikes their fancy or seems unusual and use that as a example of God at work.
I am as bad as the rest of you. I have a constant awareness of God's presence around me, working in all possible ways, mysterious or otherwise. If that bothers you then I suggest that you follow the succinct advice offered by Dr. Who in moments of crisis: "Run!!!".
In this blog I have selected one definition of God to use as my own personal blog conceit: "God is the unseen hand operating behind every human being / sock puppet in the world." I can prove this in various ways, starting with the the outrage most people will feel on being told they are merely God's sock puppet. This is roughly at the same level as the outrage people feel on being told they are descended from apes. The only cure is Christian humility.
The evidence for these unpleasant truths, however, is there. Just read the newspapers. Have I mentioned that God must inevitably have a colossal sense of humor? It stands to reason although reason is out of favor with the devout. For that matter, the devout do not have much of a sense of humor.
Thursday, October 11, 2018
Status Report
I have completed the first round of chemotherapy. The greatest blow, of course, is yet to come. If this is as much as I have to endure then I have little to fear. I am not someone to trust others, ever, unless there is little choice. Right away I need to point out that certain love relationships leave little choice about trust. Children are never offered a choice about their parents. Later on, parents have only a little more choice about loving and trusting their children. This raises an interesting question about the purpose of Life. One view might be that all these lives are passing through a process of purification in preparation for further development "later on".It's not fair. Some people experience far more than their share of purification. I have been relatively lucky, or else irresponsible. My bubble is mostly intact and (according to 23andme) I am less vulnerable to physical suffering than some. No. It's not fair.
The equality is there, however, when we emerge from the darkness - and when we devolve back into the darkness.
The Sock Puppet Speaks
God: Bob...
Bob: Now what?
God: I have to say it. You are now the human equivalent of Schrödinger's cat.
Bob: What??!! Are you trying to tell me something?
God: You are now a purely probabilistic phenomena. All your base r belong to us.
Bob: Probable is "OK". Probe-able is not so great. There has been way too much of that lately, what with getting the tumor scraped down. Then there is the uber-IV installed in my chest. I feel like an inmate of Shayol. Will the dromozoa arrive soon?
God: Say your prayers, Bob.
Bob: What??!!
Bob: Now what?
God: I have to say it. You are now the human equivalent of Schrödinger's cat.
Bob: What??!! Are you trying to tell me something?
God: You are now a purely probabilistic phenomena. All your base r belong to us.
Bob: Probable is "OK". Probe-able is not so great. There has been way too much of that lately, what with getting the tumor scraped down. Then there is the uber-IV installed in my chest. I feel like an inmate of Shayol. Will the dromozoa arrive soon?
God: Say your prayers, Bob.
Bob: What??!!
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