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.

Aw, come on…let’s talk about death some more.

[I suggested last month that I would stop blogging or change the way I use this blog. Well, because I generally enjoy writing, I decided to continue writing but not on a schedule and on topics I have not yet addressed. I’ve always been a fan of evolutionary theory in all disciplines so I’ll publish on that topic some, I’m sure. But the topics I have published on will likely continue to be on the list. Death and dying continue to preoccupy me as I get closer to having an immediate, personal relationship with them. I’ll write about them starting today. I’ll still write about my cancer journey too occasionally. It’s such a different experience than people with other kinds of cancer have.]

Death and More Death

Sherwin B. Nuland

I’ve got two books on death on the go right now. One I’ve already introduced on this blog. It’s by Sherwin B. Nuland and is called How We Die. It was a national best seller in the U.S. published in 1994. Nuland died in 2014. I wonder if his dying conforms to what he concluded in 1994. Probably does. Nuland was 83 when he died of prostate cancer after his mother and his brother had both died of colon cancer. That could not have been very pleasant. He was a clinical professor of surgery at Yale University until he retired in 2009. His obituary in the New York Times expresses this thought about Dr. Nuland and his death: 

To Dr. Nuland, death was messy and frequently humiliating, and he believed that seeking the good death was pointless and an exercise in self-deception. He maintained that only an uncommon few, through a lucky confluence of circumstances, reached life’s end before the destructiveness of dying eroded their humanity.’I have not seen much dignity in the process by which we die,’ he wrote. ‘The quest to achieve true dignity fails when our bodies fail.’

And, of course, all bodies fail. 

The second book I want to discuss in this blog post is one that was recommended to me by a person who called me out of the blue from the local hospice society.* It could not be further in spirit from Nuland’s book. So, the book this person recommended is called Death: An Inside Story. It’s characterized on the cover as “A book for all those who shall die.” The author goes by the name of Sadhguru (Sad guru). The book describes him as a yogi, mystic, and visionary. This is not the kind of book I normally read, but it comes highly recommended so why not?

Sadhguru

Unlike Nuland, Sadhguru is a fan of good death. Chapter Six of his book is called Preparing for a Good Death. He writes in an idiom that is foreign to me although I have read a number of books by Indian writers in general, and also by Zen Buddhists. I have read very little Hinduism, and when I have the book has been by a Western commentator. I know people who frequent ashrams in North America, Europe, and India. They have various reasons for doing so. I won’t speculate on their motives. I can’t see myself doing that. So, when I read Sadhguru, I admit that I am doing so from a place of relative ignorance. If I ever attended an ashram I may have more insight into the ‘place’ that Sadhguru occupies in the world of intellect and inner peace. Still, I’m not at a complete loss when I read Sadhguru.

I can relate to some of what Sadhguru professes in his book, once I get past what I consider the idiomatic nature of much of what he has to say. His emphasis that death is a natural fact of life resonates with my view and jives with Nuland too. It’s not a defeat of life or a failure. His views on our place in the scheme of life and death over millions of years is not unlike my own. Where I depart from Sadhguru is in his matter of fact insistence that ghosts are real and that reincarnation is a thing. In a chapter called The Riddle of Reincarnation, Sadhuru maintains that when people have sex and create an embryo and a fetus, life begins only after forty to forty-eight days after conception. That’s when “Someone else who is ripe for that and is looking for a body comes and occupies it”. (287) I’m still wondering how I could interpret this idiomatically. He’s not saying that the occupation of an embryo by another being is conscious. Instead, he writes, it’s karmic. 

One thing that Sadhguru, Nuland and I can agree with Ernest Becker on is that we constantly endeavour to deny death. We set up very imposing institutions designed to deny death. Nuland chastises modern medicine for doing just that. Sadhguru writes that

“One reason people can ignore death and continue to live on in their ignorance is simply that the religions of the world have spread all kinds of idiotic stories about life and death. They created some silly childish explanations for everything.” (5)

 It may be that Sadhguru is not reflexive enough to recognize the religious aspects of his own work. I wonder how his discussions of his past lives and reincarnation differ from other religious denial mechanisms. He states bluntly that “people don’t die.” (13) Now, if I read that literally, it seems absolutely absurd. He follows that up by writing that: 

“In a way, death is a fiction created by ignorant people. Death is a creation of the unaware, because if you are aware, it is life, life and life alone – moving from one dimension of Existence to another”.

 However, if I read this idiomatically I see a truth there. It’s only absurd if we take his words literally. Of course people die, but the atoms and molecules that make us up have always existed and always will. When I eat a carrot, the carrot becomes me (what I don’t poop out of course) so that’s life moving from one form to another. 

Over the millennia, all the organisms we eat and call food have been transformed into something else. Life is but a movement of matter and energy from one form to another. 

In our case, as is the truth for all organisms on this planet, we are finite. We are like mushrooms that sprout on the mycelium we call Life. We find it normal that a mushroom grows then decays enriching the soil from which it emerged. It’s interesting that so many of us (I haven’t done any surveys) have such a hard time accepting that reality as our own. How do you see it? Come on, let’s start a dialogue.

I’m really doing an injustice to both Nuland and Sadhguru. It’s not nice to pick and choose bits and pieces of their work to build my own argument. I guess I’m not very nice. Frankly, there is no substitute for reading their books in their entirety to make up your own mind.

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*Early on in my cancer diagnosis, in 2019 and early 2020, I visited the pain docs at the Comox Valley hospital and a couple of the docs actually came to the house for a visit. We discussed pain and Medical Assistance in Dying (MAID). I wasn’t quite ready for that yet, but the Hospice Society is great and they make sure that anybody on their list is contacted now and again. Eventually I will likely want their services. 

What should I be thinking about now? How about death and dying, cultural discombobulation, misogyny, evolution, and pain management?

I told you last post that I would be giving up on my blog. That’s still the case. I’ll likely wrap it up by the end of this month at least in its current format, but that doesn’t mean that I’ve stopped thinking or wanting to write. When my readership fell below fifty views after a post, I decided that maybe it wasn’t worth the hassle of thinking about writing every week. Of course, some people might argue that if I have only one reader that should be enough for me. There’s an argument that can be made both ways. Who knows, things change. 

So, what should I be thinking and writing about now? As I get ever closer to death, it’s hard not to think about death and dying. My sister-in-law who was a couple of years younger than me, died recently. It seems like someone in my immediate circle of friends and family is dying every month. Such is life when one gets to a certain age. Of course, it’s not only older people who die. A forty-nine year old doctor in my Family Clinic died recently of heart failure. However, it’s certainly true that most Canadians, in any case, die at an advanced age. That will be me for sure because I’m already most of the way there.

Lately I’ve been trying to create a metaphor for the dying process. I think I’ve come up with one that makes sense. It’s probably not new to me, either. It’s the image of a wall, maybe a stone wall that can be seen in the distance just beyond a large, open field. In our younger days, the wall is low and hardly visible. We only pay attention to it fleetingly, maybe when we visit someone in the hospital, when we leave a funeral or witness a fatal car crash. Our physical vulnerability is only too obvious at these times. The truth is that we would have a hard time living our lives if we did not ignore the wall most of the time. Some people actually convince themselves that the wall doesn’t even exist and that even if it did, we could walk right through it. The thing is the wall is always there. As we get older the wall gets more visible. It gets bigger, thicker and broader and we begin to see individual stones in it. It begins to draw our attention more frequently. We seem to be getting closer to it and in fact we are.

My wall is clearly visible to me now. It’s so big, I can’t see much beyond it. Earlier in my life I could see mountains on the other side of it. Not anymore. Now, the wall demands my attention. It will not allow me to turn away from it. In a sense it’s a beautiful, solid wall. It’s obvious that much care was taken in its construction spanning the whole evolutionary time on this planet. Everyone has to come to the wall. No one is allowed to pass through it.

The denial of the existence of this wall is the essence of Ernest Becker’s work. My early posts on this blog consist of an exposition of Becker’s work and his contribution to understanding the denial of death. His last book, one that he had no hand in publishing because he was dead, was rightly entitled Escape From Evil. The evil that Becker writes about is death and disease. This book is a must read for anyone who wants to understand the power of denial in our lives because it’s a power that has determined so much of the death and destruction this planet has experienced with Homo sapiens at the centre of it.

Let’s now explore that denial a bit from a different perspective than I would have normally used. First up is how our social world seems to be coming apart at the seams with the war in the Ukraine, growing authoritarian at home and the pandemic that doesn’t seem to want to go away. I’m talking about the discombobulation of our social world and our reactions to it. Later I write about misogyny and evolution with a nod to Aristotle, the consummate misogynist and other philosophers of his time and ilk. But first, discombobulation.

Discombobulated  

This is my drawing of discombobulation. It’s my personal visual statement of my reaction to the Kurt Vonnegut world we live in today.

The word discombobulation is an old word from the 19th Century that shouldn’t be forgotten because it so expresses the sense that not much makes much sense anymore. The world really hasn’t ever made much sense if one considers humanity’s millennia-old legacy of war and brutality combined with a huge dose of goodwill and caring underlying much of human history. It seems as though every generation has to learn this truth on its own never learning from history. I’ve spent my whole adult life in a quest to unravel this discombobulation. I think I have things more or less worked out (with the help of a lot of people now dead who were much smarter than me), but I can’t seem to communicate that to enough other people for my knowledge to make much sense. At least I feel that way sometimes. I may be like the proverbial falling tree in the forest with no one around to hear it fall. What does it matter? Well, it does matter to me. Sometimes I think of my writing as a drop in the bucket of cultural commentary, but it’s still a contribution.

That said, it’s a contribution that will leave many people behind. Admittedly, reading my blog posts requires a modicum of literacy. I don’t speak to a Grade 8 audience. That in itself will limit the influence of my work. My personal intellectual voyage can never be yours, but we must learn from each other otherwise the discombobulation wins. Patently, there are many people (No, I haven’t done a survey although others have) who are incapable of hearing what I have to say because they have been captured by an ideology that is inherently contradictory in itself but still seems to speak to their individual lives somehow. I’m talking about people who deny that we are inherently social and dependent on each other not only in our families and other intimate relationships, but in a collective sense with people we don’t know personally but who, combined, hugely affect the world we live in.*

I’m referring here to people who see taxes and government as an infringement on their freedom, whatever that means. They have no idea themselves what ‘freedom’ means, and it’s almost embarrassing if you dare ask them what they mean by it because their answers are naive to the extreme and essentially childish. In other aspects of their lives they may be competent enough, but when it comes to thinking about their place in the world and their responsibility to others, they just have no idea, except to spout platitudes they have absorbed by watching too much Fox News or have been absorbed by concentrating on their belly buttons for too long. I’m no big fan of much of what government does, but I’m not willing to chuck out the baby with the bathwater either. 

Recently, Carolyn and I listened to a CBC Ideas podcast on The Authoritarian Personality. The people who fit this profile are the people I’m talking about. The Authoritarian Personality is an idea popularized after the Second World War by Theodore Adorno and others to try to explain why people are attracted to fascist leaders. The book is available to be borrowed for free at the Internet Archive but it’s been revived and republished with an introduction by Peter Gordon of the Frankfurt School and is available on Amazon in various formats, including as an eBook, but it ain’t cheap. The book was first published in 1969 but was in writing for some time before that while the research for it was being conducted in California. The book itself and the blazing controversy surrounding it can be seen at the Internet Archive by simply typing in The Authoritarian Personality in the search function and looking around. Some of the reactions to the book are a full example of discombobulation. In fact, I would argue that the book is itself a treatise on cultural discombobulation as are reactions to it. We live in a discombobulated world but there’s nothing new about that.

So, I’m thinking that this post is long enough. I have probably another 5 or 6 thousand words I want to get out of my system at the moment but I think I need to break those up into manageable chunks. Therefore, I’ll leave this post as it is but I’ll carry on writing about the other topics in the title of this post and present them to you as soon as I get them fleshed out with good references, etcetera. Besides, it’s six o’clock in the morning and I’ve been writing since two thirty. Yesterday I went back to the hospital to get back on my chemo regime. The dexamethasone I took yesterday won’t let me sleep anyway, so instead of fretting that I can’t sleep, I might as well write, but enough for tonight…it’s getting light out and the coffee beckons.

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*This is a disparate group of people from grocery store clerks and managers, to cops, to delivery drivers, to municipal workers, librarians, veterinarians, road crews, mechanics, garbage (solid waste) collectors, baristas, Hydro crews, emergency personnel of all kinds, Hospital workers including medical doctors, nurses, technicians, etcetera. I mean anyone you come into contact with on a daily basis and who provides you with a service you depend on. Just think about it. You are massively dependent on others, even people in China and other Asian countries who make your T-shirts, jeans, phones and computers for you, and on the people who work on the planes and boats that get those products to you. How can anyone deny that? But they do because to recognize this fact they would have to accept that their individualism is contingent and not absolute. We are not free to do whatever we want. Let’s just get over that silly notion. I used to challenge my students to unplug their homes, and I mean in every way: cut off water, electricity, the internet, waste collection, everything. Do that for a few days and then let’s discuss how independent and ‘free’ you are.

I’ve struggled a lot lately about whether my glass is half full or half empty. I’ve lived seventy-five years. Is that a good thing, a bad thing, or just a thing? 

Whatever. 

Lately, I’ve often mused nostalgically about my past. My present is not what I would have it be, but I’ll write about that below.

For now, I want to write about moments in my past that were particularly instructive for me. You all know that I have cancer. That’s not news. However, some of you may not know that I was diagnosed with kidney cell cancer in 2002. From what I was told, I had what they call a lesion on my left kidney. In this case a ‘lesion’ means a fairly large growth protruding from my kidney. They were loathe to do a biopsy because any puncture of the lesion or any attempt to remove the growth by aspiration was going to spread the cancer far and wide. So, they scheduled me for surgery. I was fortunate to have a very good local urologist perform the surgery with my GP attending (he’s an internist as well as a family physician).

My Nephrectomy

When my time came for my nephrectomy (removal of my kidney) on February 17th, 2002, Carolyn drove me to the hospital early in the morning and left me there to find my way to the surgical unit. I wasn’t there long before they ushered me into the operating room. I was set at ease to see so many people I knew there, including a nurse who was a former student, my GP and the surgeon. I didn’t know the anesthetist although I had met him earlier in the hospital for a pre-surgical interview. 

So, taking my kidney out would be a straightforward affair if you knew what you were doing! Thankfully, the urologist knew what he was doing. In order not to spread the cancer far and wide, he opted to open me up using a 35 centimetre incision between my ribs on underside of my left arm to my midsection but lower on my body. They essentially cut me in half so they could gently lift my kidney out of my body without messing with the surrounding tissue and risking metastasis. I heard later that my GP was humbled by the process of cutting me in half and putting me back together. 

After the kidney was removed and they made sure they hadn’t left anything in there that shouldn’t have been there, they stapled me shut and sent me off to a room upstairs. I was there for a few days. I had a morphine pump to make sure I had no pain but it did have a governor on it so I didn’t overdose. That was kind of them, I think. 

I went home after six or seven days. We had just moved to Cumberland on an acre. There was lots of work to do. I couldn’t do any of it. Thankfully a number of my family members came over. There was lots of help and Carolyn was healthy, as she still is so I watched as my family and some friends helped us move in and get the yard together. 

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Visit to Cancer Care Centre 

We saw my local GP/oncologist this morning. These meetings are always interesting. I’ve been off chemo for a month and I’ll be off again for another month so that we can more properly assess how I react while not on the chemo meds. I’m also off hydromorphone (opioid), having gone through the nasty process of withdrawal over the past few days. I’ve never taken a very high dose of it, but I have been on it a long time. That makes it a bit of a challenge to stop taking it. I’ve also cut way back on gabapentin, which is a drug initially used for epilepsy, but has been used for all kinds of ailments since (maybe overused). I really have no idea how it’s affecting me because I have had such a mix of medications over the past couple of years that there’s no way I can tell what med is having what effect. It’s supposed to help with my peripheral neuropathy. Maybe it is. Maybe it isn’t. I really don’t know. It’s just a bit confusing and frustrating. 

I was in the Cancer Care Centre at the hospital this morning, as I said, to meet my GP/oncologist, and I saw a few of the usual suspects getting treatment. There was an older woman (probably a bit older than me) getting an infusion in Chair #4. I’ve seen her a number of times before. This time she was with her husband (I presume) who sat in a chair beside her. We nodded to each other. A young woman came by us as we waited to see the doctor. She was in Chair #3 I think. She was dragging her IV pole along beside her as she made her way to the bathroom close by, something I’ve done many times. IV poles, with bags of meds hanging from them with a line entering the arm somewhere, are on casters but they still rattle away as they are dragged along. I thought to myself: “This is my life. I share it with people I don’t know and some I do know, people who share my struggle to one extent or other. What we share is cancer.” But we also share the care and love that the staff gives us. Notwithstanding, every one of us will die. We may survive a year, two, ten, or twenty, but we must die. I’m not complaining about that. It is what it is.

I’ve spent a good part of my life studying life and death. I’m a sociologist, but I’ve not contained myself within that discipline. I’ve struggled to see the big picture of life on this planet and how life cannot exist without death. I know it’s something I’ve brought up before, but it’s always on my mind. 

We’re coming on to spring. My favourite season. Plants spring up everywhere. They count on the decay from previous years to fuel their growth. Life is not a cycle. It’s more like a spiral, with an inevitable end. To think of the seasons as cyclical is a mistake, a comforting mistake, I guess. I’m thinking we have a built-in biological aversion to death. From what I’ve observed, we share that aversion with most other animals. Life is the big draw, death and disease are the ultimate enemy. Our whole culture is built on that false premise. Silly us. 

This spring for me is not like the spring of my tenth year, nor of my fortieth year. I’m hoping this is not my last spring. I’m thinking it won’t be, but the future is promised to no one. 

75 UP

So, this post is about what’s up with me now. I’ve reconciled myself with the fact of my frailty, which I share with all living things. It stands to reason that my body is not as it was twenty or even ten years ago. All individuals of all species, plant and animal have a life course. We’re all born. Even trees, but some of those individuals die young (like the trees that are being cut in the hills above Cumberland), some trees live out what must be considered the outer limit of life’s potential, in the Carmanah Valley, for instance, no thanks to BC’s forest industry. Some of us humans die young. Some die hacked to death in a stupid race war in Rwanda in 1994. Others die horrible deaths in the ovens of Auschwitz. Still others, of all species, die of inborn problems, with their DNA or or whatever. In the end we are all frail, even the biggest and toughest among us, and vulnerable. For most plants and animals eventually, the soft, squishy material that we’re made of becomes increasingly brittle and inelastic as we age and approach our inevitable ends. My squishy material is definitely becoming worn out. It still has some bounciness in it, but nothing like it had years ago, and there’s no turning back. But on with the story.

Being one who kind of likes living (even given what I write above) I dutifully injected B12 into my legs (alternating left and right) once a day for a week mid-January and since then I’ve injected once a week.*That should replenish my B12 levels and keep me going. It may take some time for increased amounts of B12 in my blood to make a difference to my energy levels, but I can be patient as I know that results will come. Of course, I’m fighting a losing battle. We all are. Death will catch up with me regardless of how much B12 I inject or how many chemo drugs I take. I find it almost funny that we talk about medicine, police, firefighters, paramedics, etcetera as saving lives. The best they can do, in reality, is allow life to go on a bit longer, to postpone death. In any case, I have my B12 situation under control.

In terms of myeloma, I’m off chemo drugs for at least a month. Myeloma protein is barely detectable in my blood so this is a good time to lay off for a while and see how things go. It would be grand to get some relief from side effects for a time. Next month sometime they’ll check my blood again to see what the status of my paraproteins(myeloma proteins) are. I can easily go back on chemo if the bloodwork shows a rise in paraproteins. During our last phone call my local GP/oncologist uttered the word remission. I hope he’s right but only time will tell.

Another thing has come to plague me. It looks like it’s true that nastiness comes in threes. I’m getting a CT scan on Monday of my left jaw. I saw an endodontist a while ago because of excruciating pain in one of my left upper molars. He figures I need a root canal. Well, that’s probably true, but because I had a lesion in my left lower jaw that required radiation treatment earlier this year, I wanted some assurance that this issue with my upper jaw wasn’t also due to myeloma. It may be that I should be more trusting, but the symptoms caused by a myeloma lesion and a rotten tooth are similar so I just wanted a little reassurance. I got that when I spoke with an oncologist at the BC Cancer Agency in Victoria last month. She ordered the CT scan the results of which will determine whether I get a root canal or more radiation. My, my. Life can be complicated.

In the meantime, I’m back to doing some drawing. I got a very cheap but good set of coloured pencils for my birthday last month, so I did a couple of drawings. Here they are:

Christmas cactus head on view.
Christmas cactus side view.

I have one more I want to do with the coloured pencils using a different profile. Then I want to do a couple more in watercolour on proper paper, and maybe in acrylic on a large canvas. I’ll have to assess my level of energy before I undertake a large(ish) canvas, but I seem to be getting stronger every day now.

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*If you haven’t read my post from January 13, 2022, you might want to do so now. It outlines my experience with B12 deficiency and pernicious anemia.

Life and Death: How Absurd!

[This post was first published in June 2019, about four months before my myeloma diagnosis. Lately, I’ve been re-reading my posts looking for the best ones to re-post. This one is a particular favourite of mine, so here it is for you again. I don’t think I can express the ideas presented here any better now than I did back in 2019. I’ve been trying, but with no success. So, rather than continuing to beat my head against the wall, I decided to give myself a break and re-post this piece now. I hope you find it interesting (again). Just got news that an old colleague of mine just died. It seems we’re dropping like flies these days. Pretty easy to predict.]

We are born, we live and breathe for various lengths of time, then we die. Seems rather pointless, really. For as long as we know, and from all the historical records that we have unearthed or discovered one way or another, we can only conclude that humans have not ever been terribly enamoured with this situation.

Of course, most animals are averse to death, or at least to dying. Death itself isn’t particularly scary, it’s the getting there that we have a problem with. Even an ant feeling attacked will flee or fight. Of course, once it’s dead there is no issue. Not all animals face dying in the same way. Without being too anthropomorphic, some are stoic, some are frantic. In humans, some are even self-destructive but I’m not sure that death is what suicides want. Relief from pain and suffering is probably the goal more often than not, but in many cases, death seems the only respite, the only place where there may be peace. Of course, that’s silly because there is no ‘place’ after death. Death cannot be a respite from pain and suffering because we have no way of experiencing relief from pain in death. Death is the absence of sensation, of thought, or feeling; it’s the absolute negation of consciousness. Death is no thing. Before we are conceived we are also nothing, no thing. Life as we think of it as sentience, feeling, consciousness, starts sometime in our development. It’s hard to know when. In a way, death puts an end to the whole story.  Historically and linguistically, we have wanted to contrast living with dying, but they are not opposites. Death is the only way life can happen. So, why, generally, is it so hard for us to let go of life? Well, like all other animals we have a survival instinct, or an instinct for self-preservation. With rare exceptions, there seems to be an inherent drive in all animals to continue to live. I don’t think any species would get very far without it. It does present a problem for us, however. It means we go to great lengths using our big, unfortunate brains to deny death using whatever means we can, and boy do we have lots of means! Our cat is afraid of death. She skulks around wary of a stray cat in our neighbourhood we call Mean Gene because he beats up on our Princess Pretty Paws. Still, she hasn’t managed to institutionalize death denial. She just can’t take it that one step beyond immediate, visceral run-like-hell action. And when Mean Gene is no longer in sight, Princess is just fine. She is not anxious and preoccupied with dying. She’s still interested in her food bowl, however. 

What it gets right down to is the fact that as animals we reproduce sexually and engender offspring who are themselves immediately on a trajectory to death. Living and dying are the same process. Stop dying and you’re dead. Now that seems completely unfair. We are built to die! What the hell! Well, that just can’t be, damn it!

Over the millennia, we’ve created any number of ways to convince ourselves that we don’t really die, that although our bodies may perish, our ‘souls’ do not, and that makes us immortal in a god-like way, really. For us to be immortal we must be gods and by our earthly deaths experience apotheosis. Millennia ago, when we were still in our infancy as a species, we were awed by the powers of nature and our extreme vulnerability in the face of them. We decided that there must be some sentient power that controlled the forces of nature, the floods, volcanos, fires, landslides, and other deadly phenomena. Not only were there powerful natural forces, but they were capricious and unpredictable as well as uncontrollable.

In our silly wisdom, we figured out that maybe, just maybe, we could barter with the gods so that they would leave us alone. If we presented the gods with gifts, even living gifts (as in virgins thrown into a volcano), maybe we could obviate the damage the gods inflicted on us. It was fine to kill all the people in the next village, but leave us alone, please. Well, that didn’t always work according to plan, so an explanation was necessary. So, if our village was ravaged by a fire even though we had been really good and had made lots of sacrifices to the gods, maybe those sacrifices just weren’t enough. We just had to kick up the giving a notch or two. Sadly, we are still very much controlled by this narrative. 

 

Slowly Falling Apart

For this post, I decided to create a collage of quotes and commentaries from books I’ve been reading lately. They range from comments on death and dying to philosophy, culture, and the future. So far in this blog, I’ve refrained from commenting on American Congressional politics, but I just may go there soon. I told my sociology students year after year throughout my college teaching career that the American empire would fall, as all empires fall, not from external conquest but from implosion due to unresolved, long standing conflict. The American empire, specifically, will fall because of commodity production that depends on longer and more complex supply chains and failing profits. America is falling on its own sword of profits. Supply chains and economic processing zones in a plethora of ‘developing’ parts of the world have been an issue for decades while only recently making it onto mainstream media commentary and news. I’ll explain in a future post.

US politics has to wait. It’s a mess down there but it’s a mess everywhere on the planet at the moment. Let’s move on.

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Robert Sapolsky is one of my all-time favourite guys. He has a number of his Stanford University lectures on YouTube. He’s a neuroscientist who specializes in stress. He worked in the field for many years with Olive baboons in Africa. I have a video in which his work with the baboons is featured. On the topic of the human condition he writes:

“we are now living well enough and long enough to slowly fall apart. The diseases that plague us now are ones of slow accumulation of damage—heart disease, cancer, cerebrovascular disorders.” (from “Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping (Third Edition)” by Robert M. Sapolsky)

Now, ain’t that the truth! If you check out Stats Canada’s vital statistics you’ll find out that cancer is the leading cause of death in Canada. Actually, life is the leading cause of death everywhere, but as far as the observable evidence of bodily decay and death goes, cancer is determined to be the immediate major causes. Writing this makes me want to go back and binge watch Sapolsky on YouTube. Not only does he have a lot to say, but he says it in such an engaging way that binge watching is entirely feasible. I’ll be sharing more from Sapolsky later, but now on to another very different writer.

This is a quote from another book I’m reading that I want to share with you. Talk about falling apart! Robinson is a contemporary novelist writing in the sci-fi genre with dystopian tinges. He writes:

“Say the order of your time feels unjust and unsustainable and yet massively entrenched, but also falling apart before your eyes. The obvious contradictions in this list might yet still describe the feeling of your time quite accurately, if we are not mistaken. Or put it this way; it feels that way to us. But a little contemplation of history will reveal that this feeling too will not last for long. Unless of course the feeling of things falling apart is itself massively entrenched, to the point of being the eternal or eternally recurrent individual human’s reaction to history. Which may just mean the reinscription of the biological onto the historical, for we are all definitely always falling apart, and not massively entrenched in anything at all. 31 India” (from “The Ministry for the Future: A Novel” by Kim Stanley Robinson)

Most of this quote will be difficult for you to fathom because it’s out of context. It’s the last sentence that really matters. To help you out a little with the context of this quote, the ‘order of your time’, in the first sentence means that in the course of your life you feel out of control. You can’t go back, you can’t stay still. You can only go forward towards your death. This applies not only to us as biological entities but also to our cultural and social constructs which also are bound to come and go in a generally disorderly way. We cannot be ‘massively entrenched’ in life because daily existence makes a lie of any attempt to avoid moving toward death.

Now, more from Robinson in another of his sci-fi novels set far from Earth on a ship and a moon.

“Existential nausea comes from feeling trapped. It is an affect state resulting from the feeling that the future has only bad options. Of course every human faces the fact of individual death, and therefore existential nausea must be to a certain extent a universal experience, and something that must be dealt with by one mental strategy or another. Most people appear to learn to ignore it, as if it were some low chronic pain that has to be endured. Here in this meeting, it began to become clear, for many of those present, that extinction lay at the end of all their possible paths. This was not the same as individual death, but was instead something both more abstract and more profound.” (from “Aurora” by Kim Stanley Robinson)

Robinson is not a great writer in terms of composition, but he is a very perceptive commentator on the human condition. His novels are all about the fragility of humanity in the face of evolution and death, both on an individual and social level. Death denial is a consistent theme in human history and as a goal, has engendered a mass of immortality tales with “supernatural” characters as diverse as Zeus, Jesus, Shiva and a mess of lesser gods. These characters are our heroes who will save us from death if only we believe in them. But then we come face to face with evolution and biology which care not a wit whether we believe in them or not, and which just carry on.

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So, what about falling apart?

It’s clear that average death rates have risen consistently over the decades on the planet although in the US they’ve been falling for some demographics. Falling or not, on average we live well into our seventies. In fact, Stats Can tells me that if I live to be seventy-four I can expect to live another fourteen years. These are average life expectancies, of course. Millenia ago, living to thirty-seven years of age was considered average. People died of things then we seldom die of these days (such as appendicitis).

Sapolsky understands that the longer we live the more things can go wrong in our bodies. That’s self-evident the longer we live. If we get injured while young we can expect to heal and then just get on with things. As we (I) get older the healing process slows down.

There are a few very fortunate people, especially in the world’s richest parts, who suffer very little as they get old. I don’t think I know any of those people (well, maybe one or two). That said, there is an inevitable decline in capacity as we age. That doesn’t mean we should stop living and simply prepare for death because we know it’s going to happen. For me, I have much reduced capacity. At seventy-four I have maybe a quarter of the capacity I had at fifty. But a quarter is better than nothing. I still have shit to do! I’m falling apart, yes. In fact, I can’t fall much farther, but that’s fine, I still have a way to go.

The Kindness of Evolution.

Lately I’ve been reading books by Kim Stanley Robinson. He’s a contemporary science fiction writer who ranges freely into dystopia and utopia. I first read his Mars Trilogy and I’m now following that up with New York 2140. Imagine New York fifty feet deeper in water than it is now. Half the buildings in Lower Manhattan are partially submerged and roads are now canals. Flooding has not stopped the rapaciousness of capitalism, however, which has gotten worse in the next one hundred years. It may just get its comeuppance though. Robinson’s work, although not high literature, is prescient in my estimation and is a fun read.

Most people would consider the drowning of coastal cities a disaster, and it undoubtedly is, but we don’t have to wait until 2140 to find out what coastal flooding can do. We’re getting a taste of it now. We’re also getting a taste of what fire can do as well as tornadoes, hurricanes, volcanoes, etcetera. Reading the news these days, and you’ll be introduced to fires in British Columbia, dams bursting in China, and floods ravaging Germany. So, disasters are not uncommon, and the News media are only too happy to tell you all about them. 

Still, we don’t seem to be able to get prepared for natural disasters so as to mitigate the worst of the damage they cause. Recently, Angela Merkel, the German Chancellor, opined that they would have to do better in the future regarding disaster preparation. I might note that disaster preparedness is only going to happen if there is money to be made in doing it. That may seem cynical, but history bears me out, I think. 

One thing we have to recognize is that there are many kinds of disasters, and they don’t all unfold at the same rate. A volcano usually happens at a very fast pace, but climate change, which must be considered a high magnitude disaster, unfolds are a glacial pace although some of its effects unfold as quickly as any natural disaster because, in effect, that’s what they are.

Something very interesting about human psychology is the surprise or denial we all experience in the face of disaster. Flooding? Well, we didn’t expect that now did we. Cancer? Surprise, surprise! Why me? Climate change? Nah, it ain’t happening. 

Robinson has an explanation for our reactions to disaster or catastrophe:

“…you can’t really imagine a catastrophe will hit you until it does. People just don’t have that kind of mental capacity. If you did, you would be stricken paralytic with fear at all times, because there are some guaranteed catastrophes bearing down on you that you aren’t going to be able to avoid (i.e. death), so evolution has kindly given you a strategically located mental blind spot, an inability to imagine future disasters in any way you can really believe, so that you can continue to function, as pointless as that may be. It is an aporia, as the Greeks and intellectuals among us would say, a “not-seeing.” So, nice. Useful. Except when disastrously bad.” (from “New York 2140” by Kim Stanley Robinson)

So, Robinson argues that natural selection has kindly provided us with a “strategically located mental blind spot” when it comes to disasters, including death. Death for all of us is the ultimate, unmitigated disaster, but we deny that it’s coming, or we just turn the other way and hope for the best. We just can’t believe or accept that a disaster is happening. I expect that other species have much the same reaction to disaster that we do. It would be impossible to be anticipating disaster all the time. As Robinson points out above, if that were the case “you would be stricken paralytic with fear at all times”. 

As Robert Sapolsky notes in Why Zebras Don’t Get Ulcers*, zebras are stricken with fear when they are chased by a lion, but if they avoid getting killed, they return to grazing on the riverbank as if nothing had happened. Humans, on the other hand, can imagine future catastrophe, but not in a way we can really believe. For example, as I drive down the highway, I don’t expect that around every curve an oncoming car will skid into my lane and crash into me head-on. If that were the case, I think I’d have to give up driving. Same goes for death. If I thought about my death every minute of every day, I would be unable to function in life. 

Thanks to evolution, we have a “mental blind spot” when it comes to catastrophes and disasters. Life would be impossible without it. Still, we must deal with the generalized anxiety that the possibility of disaster engenders, hence our proneness for getting ulcers and/or visiting psychiatrists.

*Sapolsky, Robert. 2004. Why Zebras Don’t Get Ulcers, New York: Henry Holt.

And the beat goes on…

Yes, it does. Sonny and Cher knew what they were singing about what seems like a lifetime ago now. I don’t know why, but the fact that Sonny died slammed up against a tree on a ski slope in Lake Tahoe the day after my birthday (January 5th) 1998 has my current attention. I guess it’s because his is a good example of a quick, unpredictable, death. Sonny had no time to sweat it. Death just happened to Sonny. No time to ruminate about it. Go Sonny go! I must confess that in some ways I envy Sonny his quick release.

Moving on, in my last post I told you that there was no longer any trace of multiple myeloma in my blood. I’m happy about that, but I must attach a disclaimer to that fact. The multiple myeloma will return. As I’ve repeated over and over, multiple myeloma is incurable although it is treatable. My oncologists have suggested to me that myeloma is a lot like type 2 diabetes in the way that it is treated by the medical profession. 

So, I can reasonably expect to make it to my eightieth birthday, although, frankly, longevity is not the holy grail here. And, of course, the six years from now until my eightieth year are not years owed to me. They are purely hypothetical time, years I might live, and years I might not. Moreover, as far as I know, after I’m dead, I won’t be able to regret anything about my life, how I lived it and for how long. “I” will not be so it’s ridiculous to speculate on what “I” might do after “I” am no longer. After I’m dead, “I” enter my immortality stage. 

I was not going to explore the whole business of mortality in this post, but I changed my mind. Bear with me. I just want to introduce here some ideas that I’ll come back to it in an upcoming post. These are not simple concepts to grasp, but, if you make the effort, it may help you understand life and death as I see them. So, here we go:

Humans are mortal, but only as long as we’re alive. To be blunt about it, it’s only when we are alive that we can die. Once we die, we are no longer mortal, we now become immortal, that is, we no longer change, and we consist only of what others remember of us. Our lives are complete. Simply put, immortal means not mortal. Well, once we’re dead, we are no longer mortal, by definition. We’ve arrived! We’ve become immortal! That doesn’t mean that we will live on forever in some form or other as defined by most of the religions that exist on this planet. No. “We” exist, after our deaths, only in the minds of others. 

My definition of immortality is clearly not the one espoused by most religions. The Abrahamic religions, for example, get around the problem of death by coming up with the idea of the soul. According to Christianity, the soul is the immortal aspect of human existence and is continuous before and after death. The body may return to the planetary store of compounds, atoms, and molecules, but the soul, well, the soul lives on in some kind of ill-defined relationship with a deity, “God” in the case of Christianity.  My definition of immortality does not acknowledge the bicameral nature of the person as consisting of body and soul. I see no evidence for the existence of a soul. Therefore, it does not ‘fit’ into any explanatory scheme I concoct. 

I could go on and on about death and dying as most of you well know, and as I promised I’ll get back to it in a subsequent post, but for now I’ll drop the philosophizing about immortality, death and dying and take up an issue that I’m currently faced with given the fact that we’ve tamed my myeloma. 

A few months ago, while I was still struggling with active myeloma, the pain in my bones was severe, and it was compounded by peripheral neuropathic pain. At that time a priority for me was pain relief. It still is to a large extent, but now, my priority is to see how far I can go in weaning myself off pain medications that were crucial for me for the time I was under the full effect of myeloma.  Now, I’m on two prescription pain medications and I take acetaminophen when I think of it. I was on three prescription pain meds until just recently, but I quit one of the medications cold turkey. Along with several annoying side effects, one of the more insidious side effects of that medication is dry mouth. My sense of taste was affected. I could barely taste some of my favourite foods and some I could not taste at all. I was anxious to try life without this med and as it turns out I’m quite confident that I’ll be fine without it. 

That leaves me with two pain meds. Gabapentin is a med I take for neuropathic pain. I’m currently cutting back on it to see how it goes. I’m not going cold turkey on Gabapentin, but I am determined to eliminate it from my pantheon of drugs. Hydromorphone is the drug that is the backbone of my pain treatment. I take it in slow-release form twice a day to deal with the daily predictable pain I get from myeloma’s excavations of my femurs as well as from sciatica and degenerative disk disease. I can also take hydromorphone in what’s called a pain breakthrough mode. That is, if the slow-release form of hydromorphone isn’t doing the job, I can take a more fast-acting form of the drug in any amount I feel is needed. I have taken breakthrough hydromorphone, but only sporadically, and as a last resort. I take as little of this drug that I feel will do the job. Taking more than a few milligrams of breakthrough hydromorphone leaves me hallucinating, not something I enjoy.  

The problem is that I’m seventy-four and at my age, the degenerative process is well under way. There’s no stopping it, and it’s not satisfied until it’s done. At my age, just about everybody has back pain and sciatica. These are conditions endemic to the species. It serves us right to have evolved from an arboreal species to one that is bipedal and an upright walker. Monkeys don’t have back problems. 

So, my challenge at the moment is to reduce my intake of pain meds to the point where I get pain relief without experiencing all the negative side effects of the various meds involved. So far so good. We’ll see how it goes.

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I’m writing this post on one of the hottest days of the year so far with tomorrow promising to be even hotter yet. Thankfully we have air conditioning, so the house is staying at a very acceptable 24.5˚C. Outside today, according to our weather station, the temperature has topped out at around 40˚C. Tomorrow, the prognosticators have promised us temperatures of 40˚C at mid-afternoon, so the beat goes on. 

I’m not complaining about the weather. The weather is what it is. It doesn’t respond to our needs, but instead requires that we respond to it if we’re not happy with it. Good luck with that. On to the next post now. Maybe I’ll take less time to get it out than it took me to get this one out. No promises. 

Check out this article Carolyn found for me. It’s a great discussion of chronic pain:

https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other