Chemo and life

July 27th, 2022.

It has been about twenty hours since my second infusion of carfilzomib. I take dexamethasone in conjunction with my infusion and that’s what I’m feeling the effects of predominantly at the moment. I’m dexed out, and I will be for a while yet. What concerns me the most is a repetition of the fever I got last Thursday as a side effect of carfilzomib. That fever at 38.9˚C sent me to Emerg for a long day on Thursday. The irony is that the fever is not caused by an infection, but that’s what the staff in Emerg will focus on. That’s what they know. And, of course, they do have to discount the possibility of an infection so they prescribe high doses of antibiotics. I don’t need antibiotics, but there ya go.

This time around, if I get a fever tomorrow AM (it started at 4 AM last week) I’ll know what to do about it. If my fever stays below 39˚C or so, I’ll stay at home, take a cold shower, use cold compresses and wait for it to pass. Last week the fever lasted maybe a day, and it fluctuated a lot during that time. It was funny in a way, because we went to Emerg for a second time last week on Thursday evening because my temperature had gone up to 38.9˚C. By the time we got there it had dropped to 36.6˚C. Well, that was a bit embarrassing. At that point they took some blood and put me in a room to then ignore me for 4 hours. By midnight we had had enough waiting and just went home. I don’t blame the Emerg staff. They couldn’t do anything in any case. But it would have been good to just send us home even if we hadn’t seen a doctor yet.

In any case, I’m a little apprehensive about the next 24 hours. I really need this chemo regime to work so I need to deal with the side effects and not let them force a stop to the regime. Carfilzomib is one of the last possibilities for me apparently. After that, I’m on my own. That means facing my myeloma without any help from chemotherapy. The consequences of that are well, terminal. We all get there, but I was kinda hoping to see my 80th birthday. That’s not rational, of course, because whether I die today or in 4 years makes little difference. After I’m dead, there won’t be any regrets. So, my hopes and wishes for a longer life are purely emotional.

August 3rd, 2022

So, as of now I’ve completed the first cycle of carfilzomib/dexamethasone treatment. No fevers after the first infusion. That’s great. The thing is I need this protocol to work. I won’t know if it’s working until I get my next blood workup in a couple of weeks. I meet with my local GP oncologist on August 10th, but we won’t have the results of my blood tests by then. We will meet, though, so he can assess how I’m doing. Blood work is only one factor in making decisions about treatment, but it’s an important one.

As usual, I’m dexed out after my last infusion of carfilzomib and 12 milligrams of dexamethasone taken orally. The next forty-eight hours will tell the tale regarding other side effects. I’m feeling alright given the circumstances. Strangely enough I have more energy when I’m dexed out, at least until it wears off and at that point I need to lie down and maybe get a little sleep.

I’m currently reading a book by Tom Robbins entitled Jitterbug Perfume. It hit the New York Times Bestsellers List in 1985. I read most of Robbins’ books back then along with books by John Irving and Kurt Vonnegut. Ostensibly about coming up with the definitive perfume, the book is all about the fear of death, immortality and dying. I can’t seem to get away from reading (and writing) about death and dying. That’s not surprising, really, given my time of life. Strangely, I feel I need to apologize for being so focussed on death and dying. After all, death, according to Ernest Becker, is one of the twin pillars of evil in our world, the other pillar being disease. It seems I’m immersed in the twin pillars of evil. So be it. It’s my life right now. Chemo is my life too at the moment. It’s a tough row to hoe sometimes because the end is nigh. But, it seems that we need to always focus on the bright side of life. Talk of death and dying are not welcome in a world that vociferously denies death and dying.

I know too many people right now with cancer, some with cancers much more aggressive than mine. Some want to talk about it, some don’t. Some have died recently, some are still dealing with their disease. Whatever type of cancer we have, we all face the same end. The ‘authorities’ claim that my cancer, multiple myeloma, is incurable, but treatable. Fair enough. However, the treatment can be quite harsh and whether or not it’s worth it is a question we still need to confront. That’s the case for all types of cancer.

As the song says, it’s summer time…and the living is easy. Yeah, right. For all you joung’uns with not a care in the world, you need to take this maxim and run with it. I’m not in a position to run anywhere. That’s fine. We’re all at different stages of life. Have a great summer.

The habit of life and a new chemo protocol.

July 18th, 2022

So, we went to the Hospital this morning to the nuclear imaging department to get a baseline assessment of how well my heart is pumping blood. That’s in preparation for my initiation into a new chemotherapy regime starting tomorrow since the one I was just on including lenalidomide, dexamethasone, and Daratumumab wasn’t working anymore and it was producing some very interesting symptoms like temporary paralysis or what my GP considered seizures. These ‘seizures’ didn’t last for more than an hour or two, but had lasting effects like extreme fatigue and headaches. I thought I might be having a stroke or something of that nature, but that’s not likely. In any case, my GP ordered a CT scan of my head. It found nothing! ⁉️He also ordered an MRI of my lower back. That will happen at the end of August. That might be revealing. I’ve had issues with my lower back since I was twenty years old.

Also this morning I injected one milligram of vitamin B12 into my left thigh. I do this every Monday because I have an inability to absorb B12 from food. Sometimes I inject it into my right thigh, just for variety. If you’ve never been tested for B12 you might want to consider it if you have a lot of fatigue. That may not be easy if you don’t have a family doctor, but worth it, if for nothing else, to discount it.

Tomorrow afternoon I go back to the Hospital for my first infusion of carfilzomib (trade name is Kyprolis). It has some interesting side effects and reportedly is hard on the cardio-vascular system, but is touted as a solid replacement for Bortezomib (Velcade). It’s relatively new on the market.

All the things I note above are to give me a longer life. That’s the goal. I’m into that, but eventually I’ll have to kick the life habit. We are creatures of habit. (see my note below) Are we ever. And the biggest habit we have is life itself. No wonder we are so reluctant to give it up.

July 19th, 2022

Well, tomorrow is today. Went to the hospital’s Cancer Care Centre for a 1 PM appointment for an infusion of carfilzomib. I got a low dose infusion, forty-four milligrams. I experienced no adverse effects that I noticed. My next infusion, next Tuesday, will be one hundred and fifty-four milligrams. That will be the ongoing dose I get every week for three weeks, then I get a week off before going back for another round of three weeks. So, my life is pretty much tied to the hospital at the moment. I may be able to alter my regimen a bit, but I don’t want to mess with it. I think that consistency is a major part of chemotherapy and I want this protocol to work for me for the foreseeable future. My foreseeable future is shrinking every day. That’s fine. That’s life. It’s interesting as I watch myself go through what little is left of my life, the recognition that my energy levels are dropping fast and that I can’t do things I recently took for granted. I have no regrets. I understand evolution and the need for death. I’ve played my part and will continue to play my part until there is just nothing left of me.

July 20th, 2022

Yesterday was a day filled with anxiety and doubt for me. A new chemo regime is always stressful. Will it work? Will I experience nasty side effects? Is this my last kick at the can? So many questions.

Thankfully, the crew of nurses and support staff at the Cancer Care Centre are amazingly calm and systematic. They patiently answer all of my questions, and this time around I had lots of them.

My infusions of carfilzomib are just a half hour long compared to one and a half hours for Daratumumab in my last protocol. However, for the first three weeks this time around they have me stay for an hour after my infusion for observation. That’s a good move because anything new like this is cause for caution. We were out of there by three thirty. Still, It’s an afternoon a week, and I need to be close to the hospital. No travel abroad, that’s for sure. I’m fine with that. Not much interested in travel right now in any case.

One thing I’ve noticed since I’ve been off of Dara and lenalidomide is that some of the symptoms I’ve been experiencing around my face seem to be attenuating. I can now feel my lips coming back online and my eyes don’t feel as puffy and buggy-outy as they have been for some time now. Maybe, just maybe, I’ll feel a little more ‘normal’ now. I hope this trend continues. The sensation around my eyes is particularly disconcerting. Anything to relieve that is good news. I’m feeling optimistic about carfilzomib but there’s a ways to go yet before we have any sense of whether or not it’s working to keep me alive.

I sleep well these days. That’s great. Of course, dexamethasone will mess with my sleep. I expect that and adjust as needed. It means that I may just read a little longer after I go to bed or wake up later and need to read a bit again before I can get back to sleep. I’m reading Agatha Christie at the moment. She’s such a good writer. There’s lots of murder and mayhem in her books, but some great problem solving too. Poirot and Hastings are principle characters in many of her books. Their interactions create a wonderful backdrop for their crime solving endeavours. Hastings is a great foil for Poirot. He’s not too bright but he is willing, and enthusiastic. The books do a much better job that the television adaptations of Christie’s work in terms of the dynamics of the Poirot/Hastings relationship. Read on. I paid one dollar on Amazon for all of Christie’s work on Kindle. What a deal.

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Just a note to end this post thing:

The fact that we are creatures of habit will be our downfall as a species.* We can’t seem to kick habits we know are bad for us. We know that fossil fuels are in the process of polluting the planet to such a degree that we may very well not be able to reverse the process. The pollution is what is killing us, not the fossil fuels themselves. We keep driving our cars and trucks. That’s a habit hard to kick because we also have a habit of spending money, and we have to get that somehow. Working for others (employment) seems to be the main way we do that, but contract work is also quite common. Employment is a relatively recent way of organizing labour. I wonder how much longer it will last. What I can guarantee you is that it will go the way of the dodo bird just as everything else does.

One huge issue we face is the generational lag that dominates our lives. We tend to think that we can live the way our parents and grandparents lived. We buy big fishing boats and huge RVs to wander around the oceans and roads like the 20th Century had never passed. We all want to live in detached single family houses (around here at least). Well, our parents did it, why can’t we? Maybe it’s because fish are disappearing at an alarming rate and gas is so expensive and polluting. But we’ll carry on because that’s what we know. We do feel anxious about it. That anxiety sometimes gets squished out of our minds in strange ways such as in ‘freedom’ convoys and ridiculous conspiracy theories. Oh well, steady as she goes. We all get to the wall sooner or later.

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*All animals are essentially creatures of habit. We all develop habits of life, some learned, and some tropismatic. We cling to them as long as we can. So it goes. It works as much for bees, chickens, and elephants as much as it does for humans.

Evolutionary Theory vs. Structural-Functionalism.

[Don’t be too put off by the title of this post. It looks highfalutin. It may be, but the text isn’t.]

It’s a truism to say that our lives are finite and that we go through stages of development and change. But, it seems, sometimes we need to be reminded of obvious but possibly unwelcome realities. I’m sure we all understand that we follow a path of change starting at birth and ending at death. In between we move from infancy to childhood, to adolescence, to adulthood, and then to old age. Of course, not all of us get to go through every stage. For some of us, the stages get cut off and we die young or accidentally. We may contract a disease at any age that proves fatal. Governments document all of these things with vital statistics and publish all kinds of data on birth rates, types of mortality, morbidity*, et cetera. British Columbia offers a lot of this information online. Statistics Canada also gets into the act and publishes a lot of health related statistics. It’s not an exaggeration to note that we are obsessed with our health and wellness. How much of the internet is dedicated to health related websites? The woo flows freely and the sales of every magic potion, miracle diet, and supplement imaginable are on offer. And there is overwhelming evidence that at every turn we find ways to deny death. As I’ve often noted, one of Ernest Becker’s most salient observations is that the twin pillars of evil in our world are death and disease.

Our entire medical system is set up to discover and ‘fix’ any human organism that doesn’t conform to what we consider normal for any stage of development. It is often unsuccessful in that endeavour, but it doesn’t like to discuss its failures.

Pathology as I use it here describes a condition of abnormality (non-normality), a structural and functional situation wherein things have gone wrong in an organism. The underlying assumption of pathology is that organisms all have a normal condition, and if things cease to work as they are supposed to according to medical science, then they are considered pathological, or at least the cause of their malfunction is searched out and an attempt is made to restore the organism to normality. Medicine, and in fact, our whole culture, decided a long time ago what normal humans should look like and how they should behave. Yes, we all live and die, but pathology isn’t really interested in those realities. A pathological perspective is only interested in bringing a diseased organism back to normality.

Science and medicine have analyzed and dissected the human body in great detail especially over the past five hundred years. Leonardo da Vinci, born in 1452 was adept at dissection, and he led the way for countless others who carried on the tradition. Later, biologists analyzed the human body from many perspectives, broadly using anatomy and physiology as major categories, but focusing on systems (cardio-vascular, endocrine, etc.), organs, cells, and their functioning. I’m no biologist so I won’t pretend to understand the intricacies of the investigation of human biological life. However, it’s clear that our organs (heart, liver, kidneys, et cetera) are of great interest to medicine, particularly if and when they cease to function the way they are supposed to.

As a quick aside, a major sociological school used (and still uses) what Emile Durkheim calls the organismic analogy. He suggests that society is much like the human body. He argues in his dissertation Rules of Sociological Method that there is no organic equivalence between human organs and social systems, but broadly, they share the same epistemological underpinnings. Human organs work in concert for the good and survival of the whole. That’s easy enough to understand. He then argues that human social systems, politics, family, economy, education, et cetera, must work in concert for the good of the whole society. Social pathology occurs when any one or other of the social systems that make up society fail to fulfill their function. The result is that the whole society is ‘sick’ or malfunctions. The problem with this perspective is that it’s not especially easy to find ‘a society’. From my point of view, societies are not be confused with countries or nation-states. They are not necessarily equivalent.

It’s easier to identify an individual human being than a society, or so it seems, until we ask the question: Is an individual human being a stand-alone organism? My answer is no. I could not and would not exist without air, food, water, et cetera. These elements are not necessarily a part of me, but they are essential for my life so excluding them from an analysis of what I am as a human is highly misleading. It suggests that we are somehow separate from the world that surrounds and sustains us. This is a foundational part of the individualism that characterizes our capitalistic world and it’s wrong.

So, broadly, we are captured by a world view that focusses on the structure and function of our organs in a biological sense and our social structures in a societal sense. This is why people often argue that what’s ‘wrong’ with our society is that the family isn’t doing its job, the economy is failing us, education is behind the times, and other simplistic criticisms. Figuring out how to fix it is another thing entirely.

In terms of the human body, if medicine finds that the heart is weak or not working properly, it tries to ‘fix’ it, that is to restore it to its presumed former state. It may conclude that a weak heart will have deleterious effects on the kidneys, and it may even find that a weak heart will threaten the organism as a whole. In contrast, an evolutionary perspective expects the heart to weaken as it ages. It expects that lungs will lose their ability to process oxygen. It expects that over time, muscles weaken, no matter what you do to counteract it. It expects death because death is built right into the model, unlike functionalism whereby death is left unconsidered or considered a clinical failure.

It’s true that an evolutionary perspective has made substantial inroads in science and even in medicine. It hasn’t in sociology, although it’s coming along**.

An evolutionary perspective follows the logic I present in my recent post: LIFE vs My Little Life. From this perspective, birth and death are normal human events. Death, especially, is not considered a defeat, it being an essential part of life. No death, no life. It’s as simple as that. That doesn’t mean we have to be happy about it. Just the amount of effort the human species has spent on denying death, on convincing itself that death is not the end of life, is testament to how unhappy we are with death and dying.

I don’t want to die, but I don’t have a say in the matter either.

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*morbidity refers to the incidence of ill-health in a population.

**see my (slightly outdated) dissertation on the topic published on this blog.

Freedom: Just Another Word for Nothing Left to Lose?

I’ve been relatively quiet about the ‘freedom’ movement in Canada. The ‘freedom’ convoy in Ottawa earlier this year set off a fairly entrenched opposition to vaccine mandates and other freedoms purportedly lost according to the leaders of this movement, at least one of which is still in jail for an inability to respect bail conditions. It’s impossible to know how many adherents the ‘movement’ has, but it is definitely a small minority of Canadians at this time. Who knows, however, what the future holds. 

Hyperbole is rampant in recent pronouncements from the leaders of this movement, one even suggesting, according to an article by Sarah Richie in The Canadian Press, reporting on statements by a ‘leader’ of the movement, Canada is facing a civil war. If it were true that Canada is facing a civil war, I’m not sure what the fighting sides would look like. Maybe anti-vaccine types on one side and everybody else on the other? I don’t know. I can’t seem to wrap my head around the notion of a civil war over vaccine mandates. 

Now, if the ‘freedom convoy inspired protestors’ represented a real political movement that, for instance, rejected the overriding influence of public corporations (global ones, primarily) in politics, I might sit up and take notice. However, I don’t see anywhere in the press or on alt-right websites that anything like a coherent platform for revolution or civil war is extant. Right now, it just seems that the only policy they have is flailing arms, shouts of ‘freedom’, flag waving, and rank ignorance of history, politics, and common sense. 

The whole notion of freedom and the purported loss of such is singularly misguided. Where does the idea of freedom originate? The idea of personal liberty and ‘freedom’ (although I hesitate to even use the term) can be traced back to the beginnings of a capitalist mode of production in Europe as far back as the thirteenth century, but really taking off in the sixteenth century. By the nineteenth century, the transformation of the peasant class into the urbanized working class was solidified. Along with the real transformation of people’s lives from rural to urban came the idea that people were now free to move around, change employers if they so desired, giving the impression that individuals were now in charge of their destiny. Veblen’s book The Instinct of Workmanship (1918), although makes for ponderous readings to some extent, is probably the best analysis of the creation of the urbanized working class that I have read. It’s not possible to summarize Veblen’s argument here. It’s a complex analysis of the rise of the business class and the idea that although we, as humans, long to do things, to work, we are not particularly suited to employment. The distinction between work and employment is basic to his argument. 

It’s always been true that individual human beings have agency. We are not like billiard balls subject to movement only at the invitation of the cue, although strangely there is some truth to this view. In fact, as Thorstein Veblen points out in the early twentieth century, that idea is the foundation of modern classical economics.

At this point I invite you to read a blog post I wrote in early 2019. It’s about the hedonistic calculus and what Veblen does with it in his dissection of neoclassical economic theory. It’s not a post wherein I write about my experience with myeloma because I hadn’t been diagnosed yet. I would also invite you to read my blog page on critical thinking which is based on an earlier article I wrote for teachers. It addresses the fact that we generally lack awareness of our place in the world because the school system systematically, via its prescribed curriculum and in spite of the efforts of individual teachers, fails to systematically address our social responsibilities. 

This brings me back to our ‘convoy’ protestors. The ignorance expressed by the ‘leaders’ of this ‘movement is astounding. They insist that they want freedom without ever telling us what they mean by that except to suggest that they don’t want vaccine mandates. They feel that vaccine mandates infringe on their ‘rights’. They should consider that they live in societies that require some individual compromise to ensure the safety and security of its citizens. 

Don’t get me wrong. I have no love for the Federal government’s unfailing support of often dangerous and completely self-interested business corporations, sometimes not even Canadian ones. But, like I said before, if the convoy goofies had an even basic understanding of Canadian political economy I might be inclined to hear their arguments. But they have no analysis, just empty opposition to perceived grievances. 

Their anti-mandate grievance and calls for ‘freedom’ have no place in a social world. We drive cars, but we need licences to do so. We can’t simply get out on the road  without a licence or insurance and expect to be left alone to do that. A world without rules and regulations would be an impossible world. There are countries where ‘rules of the road’ are mostly non-existent, but there are unstated agreements among motorists and others sharing the road as to how to conduct themselves on the road. Those unstated agreements are social contracts nonetheless. We rely on social contracts every day of our lives and in everything that we do. We depend on other people always to provide us with services for our comfort and security. Yes, we are individuals, but we always act socially and, in fact, we couldn’t exist as individuals. 

To think about how dependent we are on others, just think about how often you interact with others every time you buy groceries or fill your car with gas. What of the roads we drive on? We don’t build those as individuals. We build them collectively through our taxes (although not always without complaining about it). We, most of us, have water piped to our homes, electricity to power our heating systems, to refrigerate our food, and sewage lines to take away our effluent. Without millions of people all over the world ensuring that we have what we need to live comfortable lives, we would be living cold, brutish lives in caves. Imagine if you were only allowed to wear clothes you made yourself from material you yourself gathered. That’s not possible in this day and age. 

There are people who want to live off the grid. That’s fine, but even that means buying arrays of solar panels, having vehicles to transport goods, seeds, livestock, and the means to access health services if necessary. We may try to live as socially distanced as possible but we still need to acknowledge how dependent we are on others and why we should have some consideration for their health and security because in the end our health and security depends on theirs. 

It seems to me that the ‘freedom convoy’ folks don’t have a coherent platform, nor do they have even a basic plan. What they seem to have is a diffuse and incoherent opposition, maybe a sense that their lives are meaningless, but that they would be filled with meaning if only the government would be removed or there were fewer rules and regulations. The fact is that rules and regulations arise often out of a need to live in society with others and to resolve conflicts between them. To be moderately safe we all need to drive on the right side of the road. If even a small minority of people refused to accept this rule and started driving wherever they wanted to we would all be in serious trouble. If someone does drive on the left in Canada, and insisting they have a right to do that, they could have their license revoked, just as anti-vaxxers can lose their jobs if they refuse to be vaccinated. Nobody says you must be vaccinated unless there is, like in the military or in health care, a need for absolute safety (or as close as we can get to it). So, get over it. Play by the rules or play another game somewhere else.

#78 LIFE vs My Little Life

[I posted this in February, 2021. I’m re-posting because I think it expresses how I’m feeling right now about life and death. I will follow up with another commentary in a couple of days if all goes well.]

LIFE in capital letters is life writ large. It governs all manifestations of individual life. It goes on merrily as individuals live and die generation after generation. Ironically LIFE needs death to make more life. After all, we eat dead things, don’t we? Of course all plants and animals follow the same pattern. They come and go, often by being consumed by other living things. It’s almost March and the property here is getting ready to burst into life after the long period of die-off and dormancy that is winter. Flowers are appearing even with freezing temperatures.

The early ones are aconites, snow drops, early crocuses, and maybe violets. They express life briefly then give way to the grasses, the ferns and the flowers of spring. The pear, apple, plum and cherry trees will soon display their flowers in preparation for the fruit that will follow as long as the pollinators do their thing. The birds are into mating season and we’ll soon have baby robins, finches, nuthatches, flickers, thrushes, jays, hummingbirds, and chickadees hassling their parents, fluttering their wings and demanding food.

The sun is shining right now. It wasn’t supposed to according to the weather forecasters, but there ya go. Living and dying under the sun. That’s what’s going on. My adult life has been informed by the scholarship of life and death, that is, of life and death as considered by philosophers and scientists. The thought of my own dying hasn’t occupied very much of my time except when my mother, father, and sister Denise died, and then only briefly. Being diagnosed with multiple myeloma, a cancer that is incurable but treatable, changed all of that. Myeloma kind of sets the stage for end-of-life considerations. There’s no escaping myeloma’s trajectory. It will kill me eventually if I don’t die of something else first. Now, I have a hard time not thinking about my dying.

For most of my teaching career I used Ernest Becker’s work (The Denial of Death, Escape From Evil) to discuss the role of the fear of death on our cultural institutions. The fear of death and the promise of immortality and their overriding presence in institutions such as patriarchy and misogyny have shaped our social relations and created the conditions necessary for human contest and eventually homicide on a grand scale and war.*Related to our fear of death is our propensity to cut deals with deities. Humans have invented thousands of gods (and related semi-gods or supernatural entities) over the millennia. We assign responsibility to those deities for natural disasters, crop success or failure, floods, earthquakes, volcanoes, and the like. We even put faith in God for winning a football game or a war. We barter with the gods. We make sacrifices. We tell the gods: “Look, we are sacrificing this young woman for you by throwing her into this volcano, now you must reciprocate by ensuring our crops grow well next year.” A life bartered for more life. That’s largely the story of countless religious (and political) invocations over the millennia. Priests and politicians constantly urge us to make sacrifices so that the future will be better.

Modern medicine is an elaborate institution for the denial of death. It’s all about ‘saving’ lives, and it’s willing to go to extreme measures to accomplish that goal. Of course, ‘saving’ a life means little more than postponing a death. Obviously, I’m personally invested in modern medicine and pharmacology. I’m hoping that chemotherapy and radiation treatments will buy me time, effectively giving me more life and postponing my death. Chemotherapy and radiation treatments are not cheap. Just one of the drugs I’m taking will cost over $100,000. One of the pharmacists at the pharmacy in Victoria that dispenses the drugs I use told me over the phone recently that they have some million dollar patients out there, patients that have used these drugs for many years. I attend the Cancer Care Centre at the local hospital and I’m impressed by the technology and the expertise of the many staff nurses and doctors that work in that facility. That can’t be cheap either.

Modern medicine will go to great lengths and expense to treat patients hoping to extend their lives. It must do so otherwise it fails in its sacred mission to safeguard life and battle death, the ultimate enemy. As Becker notes, in our culture death and disease are the twin pillars of evil. Disease prevents us from enjoying the pleasures of life while death cuts them off summarily.

So, we are willing to invest a great deal to save an individual life yet we are also willing to gleefully pile corpses in great heaps during war or in the context of ethnic cleansing, that vile excuse for murder, rape, and pillage as in Rwanda, 1994, or in any countless examples of such celebrated mass murders. We gladly kill for US, for our people because THEY(the enemy) are obviously responsible for our misfortune and distress. If we eliminate THEM our problems will be solved. That is the big lie. As Becker notes, we need a THEM with whom to enter into contests to show our prowess and to show our God (gods) how powerful and deserving of eternal life we are. Why do we spend so much time, energy, and money on organized sport? Sports reflect our constant need to show how deserving we are of life and more life. We win, we go to heaven. The gods are obviously on our side. We lose and we face shame and rejection. This analysis can easily be applied to American politics now too.

I’m rambling now. I guess I’m trying to avoid writing about the finitude of my life, my little life. In the face of LIFE and its overarching grip on the process of life and death, my little life doesn’t amount to much…but it’s all I’ve got really. Maybe I can celebrate my insignificance. Maybe I can celebrate the entirety of my life from beginning to end. In a way end is as necessary as beginning in the scheme of things. Let’s see what I can do with the little bit of life I have left.

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*The need for an opponent or an enemy (THEY) is based on our need to prove our worthiness in competition for the good things in life and for eternal life. The winner takes all! Very early on in human history, tribes split in two called moieties so that there would be contestants to beat proving the prowess of the winners and their qualifications for immortality.

Seizures! What else now?

After at least two consultations with nurses and an oncologist, my GP has decided that I’ve probably had a couple of seizures over the past few months. Great.

Lately, after an internet conversation with one of my blog readers I wrote to them about how fully my life had become medicalized. See if you agree with me: I take a bunch of pills morning and evening to deal with cancer and pain. I go to the hospital twice a month for bloodwork and a two-hour infusion of Daratumumab. Monday we went to Nanaimo so that I could get a corticosteroid (dexamethasone) injected into my seventh cervical vertebrae to deal with the chronic pain in my neck; Tuesday morning I had an appointment with my GP for a prescription renewal, and to discuss a plan to send me to Nanaimo again, this time for an EEG if the CT scan I got Tuesday evening showed nothing. In fact, it did show nothing that could explain the two seizures I’ve had over the past few months, one very recently, so off to Nanaimo I go.

The thing is, if they find an abnormality in my brain using the EEG, they will simply want to put me on another drug, an anti-seizure drug. I’m already pickled in meds so why not another one?

My life seems to be driven by medical issues. I’m not alone in this, of course. Many of us have a close personal involvement with medicine, whether in the form of physicians, specialists, pharmaceuticals, hospitals, and various other medically-related bureaucracies like our Health Authorities in British Columbia, possibly all of the above. They should actually be called Sickness Authorities because that’s what they deal in, sickness. 

The provincial budget allocates billions of dollars for illness related issues. It’s hard to pinpoint exactly how many billions of dollars because they get spread out over several spending categories. For instance, the Ministry of Health is projected to spend approximately $25.5 billion in 2022-23 of an estimated $71 billion in total budgetary expenses. There’s another approximately $8.6 billion for infrastructure related to health. I assume the new Dementia Village in Comox falls under this category. Aging and dementia are health issues, apparently.

So, tons of money is spent every year on health issues. I account for some of that, I certainly do. The Daratumumab I get by infusion every month costs a reputed $10,000 a pop. Now that’s a big investment in my being. I’m not sure it’s justified, but it happens because of an overarching ethic dominated by the fear of death and the perceived sanctity of life. As Ernest Becker points out in Escape From Evil, the twin pillars of evil for us humans are death and disease. We do everything we can to fight them. Obviously we fail completely in dealing with death, and fighting disease is often a losing battle too. So, what are we doing? What’s the point? What if we had no ‘industrial’ medicine? Humans lived on this planet for millions of years without doctors, hospitals, and pharmaceutics? Why do we spend so much on them now? 

I can safely conclude that part of the motivation for spending such inordinate amounts of money on ‘health’ is to keep the workforce working and reliable day after day, week after week, year after year. Industry requires consistent effort from the workforce, especially from those workers with technical or managerial skills. Another motivation is the transfer of power from workers to managers, in the case of health, from us ordinary folk to the specialist professionals, doctors. 

Since the 19th Century and the advent of scientific management, the control of commodity production has fallen on the managerial class. Workers have been stripped of all control over the productive process. In the case of health, doctors are the managers of our health. We negotiate with them to some extent, we even oppose them at times, but by and large they are in control. I must say though, that that situation is changing and your ordinary GP is becoming more and more a worker for a large bureaucratic organization that controls multiple clinics. Some American hospitals, for instance, extend their control over health spending and profits by buying out or establishing clinics where doctors are employees like any other. 

Obviously we live in a capitalist world where possessive individualism rules, where business is allowed to create products and services that may or may not be conducive to healthy bodies and minds. The fast food business is clearly not interested in our health. Money is the name of the game. Any deleterious consequences for our wellbeing caused by eating too much fast food is addressed by public spending on hospitals, doctors, pharmaceuticals, et cetera. Pharmaceutical businesses might initially be organized with an eye to alleviating human suffering and enhancing wellbeing, but it seems that they soon fall in line with all capitalist ventures in the need for profit above all other values. They depend on illness for their profits. I don’t think that’s such a good thing.

Then I got to thinking. I remember when I was a grad student reading a book by Michel Foucault* called The Birth of the Clinic: An Archaeology of Medical Perception. It was written in the early 1970s. The translation into English from the French (Naissance de la Clinique) has a 1973 Copyright date. Foucault was a prominent critic of institutionalized criminal incarceration, the medical clinic, madness, and sexuality, among other topics. He was a very controversial figure in French academia for decades, and a very prolific writer. He’s a ponderous writer to some, but an elegant exegesist to others. I find his critiques compelling in some ways, but belaboured in others. In other words, he’s complicated.** 

In his book on the rise of the medical clinic, his major point is that the medical ‘gaze’, the creation of a specialized, comprehensive, and institutionalized consideration of disease and pathology would become the exclusive domain of the medical clinic. We’ve even been convinced that pregnancy and aging fit nicely under the medical gaze. Other commentators on the power of modern medicine such as Ivan Illich emphasized the class basis of control over human health whereby we become supplicants in our relationships with doctors, whereas Foucault and his followers see the medical/health landscape as a set of power relations that work to “reproduce medical dominance” (Lupton, page 88). 

Because we are so freaked out about death and disease, Foucault would argue, we negotiate our necessarily subordinate relations with our doctors on an ongoing basis. According to Lupton, there is collusion between doctors and their patients to reproduce the system of medical dominance. That’s true in my case, certainly. Without modern medicine, I’d be dead right now.

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*The Passion of Michel Foucault (March 1, 1994), by James Miller is one of the best biographies I’ve ever read. It’s balanced, decisive, and comprehensive. Definitely worth a read. Come to think of it, I need to read it again. 

**See Deborah Lupton, Foucault and the Medicalization Critique, Chapter 5 in Foucault, Health, and Medicine, Edited by Alan Peterson and Robin Bunton, 1997, Routledge: London and New York. 

Sorting Things Out

The gnawing fatigue and peripheral neuropathy I experience every day from myeloma, chemotherapy and B12 deficiency I can understand. Other symptoms are less understandable and less tractable. Some of them are ongoing, some temporary.

So, today I’m telling you a story of a particularly nasty experience I had this past weekend that defies classification and that has stumped my oncologists. That may be because it isn’t related to myeloma. I don’t know. That it turned out to be temporary I consider to be a good thing, but I have no real justification for feeling that way. I won’t describe in graphic detail everything I experienced. That’s not necessary, but I will give you the gist of what I experienced so that you understand the context, that is, what I think led up to this weirdness, and its aftermath, which is still with me.

Last Thursday I went to the hospital for my monthly infusion of Daratumumab. On that day I also took dexamethasone, Benadryl, lenalidomide, aspirin, and hydromorphone (HM), that is, my usual cocktail of meds. I also took some Senokot, to counteract the constipation that invariably accompanies taking HM. I’ll also take Dulcolax if I need it as things go on.

On Friday, the dex left me with the usual spurt of energy meaning that sleep does not come easily. I got up on Friday morning having had virtually no sleep after 2 AM, but the dex was still doing its thing. We had been invited by friends to their place for a get-together before dinner, around 5:30 PM. It was so good to be out visiting friends, but it was still fairly cold out and after a couple of hours I decided it was a good idea to get back home. I was chilled more than I thought. I climbed into bed almost immediately and covered myself with lots of blankets and quilts. My legs, however, were pretty sore. I’m used to my legs being sore, but this time they were inordinately so, and the soreness was accompanied by weakness, spasms, and tingling. The tingling is usually restricted to my feet and hands, but now my legs were also involved.

I took some extra HM shortly after going to bed (2 mg). It’s called breakthrough HM because it’s used as a supplement to the 3 mg slow release HM I take in the morning and the evening. The slow release just wasn’t doing it for me, and that’s expected to happen now and again; that’s why I was prescribed 2mg of HM to take if and when the pain gets too much. I still struggled with leg and back pain so a couple of hours later I took another breakthrough HM. At about 3 AM I took another HM. I tried to sleep without much luck.

Eventually, I tried to get up to pee. That’s when I realized that I had barely any control over my muscles, all of them! As I tried to get up I slowly slipped off my bed, which is pretty high off the ground, and found myself lying on the floor, essentially paralyzed. I didn’t fall off the bed, I slid off of it. My arms were useless and so were my legs. It’s not that I couldn’t feel them, I just couldn’t move them. Carolyn came to help me, but I’m a heavy guy and she’s light but strong. Finally, with the little help I could give her, she was able to pull me into the middle of the room. Then, she maneuvered an arm chair close to me and I was able, with a lot of her help, to pull myself into the chair. We were able, then, to get the chair close to the bed. I lurched back into bed and stayed there for virtually the whole day. I’m still feeling the effects of that episode of weird symptoms.

From my consultations with the docs, it doesn’t seem like my temporary ‘paralysis’ has anything to do with myeloma. They’re flummoxed. So, off I go to get a CT scan of my head to see if my brain is still in there. 😉

I’m posting this because I really want to know if I’m the only person who has ever experienced such a thing. That means that I’d very much appreciate it if you could let me know if you’ve ever had this experience or know of someone else who has. You can PM me on Facebook, or DM me on Twitter. Or, you can email me at rogalb@shaw.ca.

Damn, it’s dark, cold, and wet out there!

Sleepless Nights, Rain Showers and Owls

It’s 8:30 in the morning but I’ve been awake and up sporadically since 2 AM. That’s a typical scenario for me the day after my chemotherapy session at the hospital on Thursday mornings. It’s the dexamethasone (a corticosteroid) that keeps me awake. The other meds just make me feel ill generally.

Being awake at 2 AM until 7 or so when Carolyn gets up has its perks. The rain showers were amazing last night. The rain just pounds on the steel roof above the bedroom and the harder it rains the more intense the sound becomes. The first one started at around 3 AM but only lasted for twenty minutes or so. The one at 4 AM was much more intense and lasted much longer. The rain will be steady today, and probably tomorrow and the day after. The Weather Network predicts that we might just see the sun again by Tuesday. We’ll see about that.

At around 4:20, just before sunrise, I heard a great horned owl shouting its call at the back of the property. The owls like to perch in the tall conifers at the back of the property and in the forest behind our back fence. They usually sound off earlier in the year as the mating season gets into full swing. This owl may just have been a little late getting itself going, like many plants in the yard. The wisteria is just starting to sprout and the honey-locust is still yawning its opposition to getting up and at it. The ferns, though, are as happy as pigs in a wallow. They like the cooler, rainy weather and they show it.

So, at 2 AM, wide awake, what could I do? Well, I could just lay there and stew, or I could pick up my Kindle and start reading. Of course, as soon as I start reading, the cat decides it’s time for me to pay attention to her so she walks right in front of my face, sticks her tail up my nose and generally makes a pest of herself. Notwithstanding the feline interruptions I often read novels that are on the humorous side from authors like Thomas King, Kurt Vonnegut and Christopher Moore. But I also read a range of books on ‘more serious’ topics like sex, misogyny and patriarchy.

Last night I continued reading a book I picked up recently by David Friedman entitled A Mind of Its Own: A Cultural History of the Penis (2001) that had been referenced in another book I just finished on a related topic: Sex at Dawn: How We Mate, Why We Stray, and What It Means for Modern Relationships by Christopher Ryan, Cacilda Jetha (2013). Like Sex at Dawn, A Mind of Its Own: A Cultural History of the Penis is a must read if you want to understand how the social and cultural relations we’ve built around sex is so out of line with our biology. After outlining some of the most egregious sexual cultural practices in the Middle Ages in Europe around sex and later witchcraft along with a compendium of culturally weird sexual practices all over the world and since recorded history, Ryan and Jetha get into some very interesting musings on the United States and its perverse official political views and practices around sexuality, many driven by religion and the drive for power by mostly white, Protestant men of a certain age. After outlining the horrendous treatment of Black people by powerful white folk and their less wealthy followers, their base in current language, during pretty much the whole of American history starting with the arrival of slaves from Africa to work in Southern plantations, they get into some more current issues, including the appointment of Clarence Thomas to the Supreme Court. [He is a year younger than me] His appointment was very controversial for a number of reasons, the most important one being that he was (is) black. This is a long quotation, but it demonstrates clearly the issues at hand and the players that are still involved in government, including Joe Biden. It’s important to note here that Thomas had been accused by a fellow attorney Anita Hill of sexual harassment but he dodged that one. He had been nominated by George H.W. Bush. According to Wikipedia he’s widely considered the most conservative and ‘originalist’ of the Supreme Court justices. It appears that he hasn’t changed his tune at all since 1991. His views are anathema to me.

From Friedman:

“Six decades later, another black American faced a committee of white men agitated about his penis. For hours those white men listened, many of them visibly appalled, to complaints from a woman about the black man’s lewd behavior toward her, all of it, she said, unwelcome and unsolicited. They heard how he bragged about the size of his organ, comparing it to a supernaturally endowed porn star named Long Dong Silver. Now that same black man faced the same committee. Unlike Claude Neal, however, he was not dangling from a rope. Except, he said, metaphorically. “From my standpoint as a black American,” Judge Clarence Thomas told the senators considering his nomination to the United States Supreme Court, “[this] is a high-tech lynching for uppity blacks who … deign to think for themselves … and it is a message that unless you kow-tow to an old order, this is what will happen. You will be lynched, destroyed, caricatured by a committee of the U.S. Senate, rather than hung from a tree.” (from “A Mind of Its Own: A Cultural History of the Penis” by David M. Friedman, page 129 Kindle edition)

and

“The exchange between Senator Hatch and Judge Thomas about racial stereotyping ensured that no lynching would occur, high-tech or otherwise. If nothing else, the all-white members of the Senate Judiciary Committee were determined to show this was 1991, not 1891. At 10:34 P.M., on October 11, when Senator Biden recessed the hearings for the day, the verdict was clear. The nominee, so close to political extinction, had come roaring back to life. When Senator Hatch left the hearing room, he was stopped by Nina Totenberg of National Public Radio. “Senator, you just saved his ass,” she told Hatch. “No, Nina,” said the Utah Republican. “He just saved his own ass.” What both probably knew, but neither could say, was that it was another part of Thomas’s body that had really been at stake all along.” (page 139 kindle edition)

I’m about half way through Friedman’s book, but so far it’s making for compelling reading. It was clear to me back in 2010 before I retired that as I was teaching a course on Love and Sex, that women had been subject to an intense misogyny for as long as recorded history and probably for as long as our species started walking upright on the African savannah. Actually, I was aware of misogyny long before 2010 but that’s when I began a more intense focus on its deconstruction. The focus of Friedman’s book, the penis, is a literary means of shifting the conversation about sex and procreation from the biological to the cultural realm. So far, I think that he’s done an excellent job of it. His analysis of Freud’s penis envy as a metaphor for the way women have been disenfranchised and generally kept out of the highest positions of business and government is particularly good and one I hadn’t considered before, at least not in the kind of detail Friedman goes into.

More on this later…as I read the second part of Friedman’s book and tie it into other books I’ve been reading, including one by Christopher Moore.

Myeloma and Pernicious Anemia: My Constant Companions

Pernicious Anemia

In January of this year I published a post about the connections between myeloma and pernicious anemia. In that post I misidentified pernicious anemia as a B12 deficiency. It’s not. Pernicious anemia is actually an autoimmune disease that produces antibodies to a protein called intrinsic factor that is produced in the gut and that is required to ‘extract’ B12 from food. It’s a devilishly difficult condition to diagnose. Low levels of B12 are obviously an important indicator, but there are other reasons that a person might have low B12 levels. Probably the best accessible article on pernicious anemia can be found on the Pernicious Anaemia Society’s website. It’s well worth reading.

Now, I have assumed for some time that I have pernicious anemia but I’m no longer certain. It turns out that 50% to 70% of people who have a B12 deficiency, which I definitely have, will have that deficiency caused by pernicious anemia. I have not been tested for intrinsic factor antibody, a test that would definitively confirm a diagnosis of pernicious anemia, so I don’t really know if I have it or not.

Whatever, I know for a fact that I have a B12 deficiency. In order to treat that deficiency I inject B12 (cobalamin) into my thigh every two weeks. However, because of my mixed record of injecting B12 over the past twenty-five years I may have what’s called  Autoimmune Metaplastic Atrophic Gastritis (AMAG). That just means that my B12 symptoms may never go away, even after my regular injections. Then again they may dissipate, but I have no confidence that that will happen.

An International study is now underway initiated by the Pernicious Anemia Society to try to understand the extent of the disease and to track the problems people have had with getting a proper diagnosis. It may be that we will get some answers, but I’m not holding my breath. At seventy-five years of age, I have a limited amount of breath left in me in any case so maybe I should hold on to some of my breath!

Myeloma

Yeah, well, myeloma. As I noted in my January post, the symptoms of myeloma and pernicious anemia overlap considerably. So, I have no idea what’s driving me nuts with peripheral neuropathy, numbness and tingling in my hands and feet, fuzzy brain, poor balance, weakness, especially in my legs, and bone pain, to name just a few of the symptoms I’m experiencing. It could be both the B12 issues and the myeloma that are teaming up to keep me in my place, and the chemotherapy is also no doubt contributing to my now radically re-assessed quality of life.

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So, that’s it. I’m old, I have a severe B12 deficiency that could be the result of pernicious anemia, and I have multiple myeloma, with its attendant chemotherapy.

As I lay in bed last night I harkened back to times in my life when I was still able to do things easily and effortlessly, things like canoeing, woodworking, building decks, garden structures, and a number of other physical things. I can still paint and draw, but with some difficulty. Writing is even getting to be an issue because I can barely feel the tips of my fingers on my left hand, my dominant hand.

It’s been difficult at times, not because of my physical abilities, but because of my attitude towards them. I’ve had challenges keeping the dark side away, the feeling that I can’t do things anymore like I used to, making me a lesser human being, somehow.

Carolyn and I both read the news and despair at the state of the world, but Carolyn seems to have a greater capacity than I do for keeping the dark side away and for maintaining a sense of perspective about the world. It’s true that the world is in a mess, but it’s always been in a mess if the press is to be believed. I have to keep reminding myself that the press, all of it, has a vested interest in propagating the dark side. That’s where the money is. Outrage and fear sells the goods. The bright side doesn’t.

That said, I don’t want to be captured by the dark side or the bright side. The world is a complex place. Life is finite and changes all the time. Mommy doesn’t have to change my diapers like she did seventy-three years ago, even if she were still alive. I don’t have to put a uniform on and go to elementary school. I never have to write a final exam or go on a job hunt ever again. Of course, I won’t experience the joy of the early days of fatherhood ever again either, of falling in love, nor of the thrill of discovering a wonderful, new camping spot.

I guess my point with all this rambling is that life is full of variety, both at the individual as well as at the socio-political level. Some things we call bad, some good. Those are judgment calls, which for us are adjudicated with reference to capitalist morality which itself is expressed in possessive individualism based on wealth and health. We look down on the poor and the unhealthy.

These judgments are not easy to counteract both at the individual and the political levels because they are so deeply rooted in our culture. They are so familiar to us that we consider them normal and reasonable. It’s easy to feel self-loathing for being poor or in ill-health. It’s almost expected of us. And those individual feelings are reinforced every day in a thousand ways by the vast majority of us as we compare ourselves to others, those with money or excellent health (mental and physical).

If I let myself I can easily be dragged onto the psychologically dark and barren landscape of blame and feelings of unworthiness. Enough of that now. I have a limited number of days, months, and years left to live. I cannot, I will not live them in fear and self-loathing.

Death is like a destination, one we have no choice in travelling towards. But, you know, some of the best trips I’ve taken have been at their finest and most exciting just before reaching our intended destination. Maybe that’s a good metaphor for the last bit of my life.

Cancer and self-absorption.

Well, it looks like spring has finally sprung. The temperatures are rising and we now look forward to sending less of our pension funds to BC Hydro than we have all winter.

The wisteria is now showing signs of life. We wondered lately whether or not it was still alive. Apparently it is alive, just taking its time waking up after a very challenging winter sleep. It’s warming up with temperatures consistently in double digits, but the clouds seem reluctant to part. This past weekend was gorgeous with a lot of sun. This coming week promises to be cloudy and dreary. Wednesday, tomorrow, is Carolyn’s 70th birthday and I have an appointment with my GP/oncologist at the hospital. At least it’s at 9:30 in the morning so early enough to allow us to get on with things for the rest of the day. Carolyn does not want to miss her usual daily ten (or longer) kilometre hike in the hills just up the road.

I’ve been thinking a lot lately about the reality implied in the title of today’s post, particularly the self-absorption part. Truth be told, I might be rightfully accused of being self-absorbed for most of my life. In some ways, I think, it comes with the territory. Writing is an activity that requires a lot of concerted attention and effort. As a college instructor I had to do a lot of reading and writing and for one stage of my career I produced over two hundred and fifty tele courses on the Knowledge Network for North Island College. In order to be able to produce the expected results I had to spend a lot of time in my head and in my office either preparing lecture notes, getting props or websites together, or marking assignments.

It may be an excuse to suggest that self-absorption is a consequence of work requirements, but I think that there is definitely a need to be alone to do much of the work I was expected to do. That may be interpreted as being distant, or uncommunicative, or selfish, depending on one’s perspective.

It’s a truism to suggest that living with others in a family requires at least a modicum of communication and interaction between members. Family implies intimacy and intimacy implies connection. Connection requires time together for the parents and for children. Some families are more closely connected than others, but some families are quite content with very little time together.

I can’t speak for my family and I surely won’t put words in their mouths here. However, I know that at times there were expectations that I spend more time with the family. I’ve been (rightfully) accused of being in my head too much and not being available to the family for conversation or whatnot. Some people would interpret my behaviour as self-absorption. Fair enough.

That said, as I work through my life with cancer, I find myself increasingly absorbed with what’s happening inside me and just how long I have left to live. I know a number of people who have died recently of cancer. Some have died soon after diagnosis. I don’t know of anyone who has died of myeloma, my flavour of cancer, the one that is now considered, like diabetes, to be more of a chronic illness than an ambush killer of sorts. I know a few people who are sick with myeloma, but none who have died from it.

As far as the people who have died of cancer are concerned I wonder how many of them turned inward as death got closer and closer? I have no idea, but if you do, I’d like to hear about it. Our caregivers may be the best people to address the veracity of my observation that dying forces us inward.

Caregivers have a thankless job. They may love the people they care for, but as people get closer and closer to death, they may withdraw more and more become increasingly unable to provide any kind of recognition or thanks for the care they receive. It may be that dying is a process of increasing self-absorption. I don’t know. I haven’t done the research.

Some people have done some thinking about this. I’m not the only one. It may not be research in the technical sense of the term. Actually, it might best be termed thoughtful investigation. I tend to be strictly scientific in my views on the dying process but I have come across very little in the way of a psychology of dying. There are some sources out there, but not many. Elizabeth Kübler-Ross (1969) gets a lot of attention for her work on the stages of grief, et cetera, but I find that her work is less scientific than grief and hospice counselling. It would not be impossible to do scientific work on my hypothesis that we tend to withdraw from society the nearer we get to death, but it wouldn’t be easy. It sure isn’t in my future.

So far, it may be just a feeling I’m having, or a conclusion I’ve come to with limited experience, but it makes sense to me that we would tend to withdraw as we get closer to death. Death, or course, is the ultimate withdrawal, so leading up to it must produce some stages of withdrawal or increased self-absorption. At least that’s what I’m thinking, and I’m sticking to it.