@dying

Bits and pieces of this and that.

~ Roger JG Albert ~ 9 Comments

November 15th, 2022

Starring blankly out over the front yard a couple of days ago at our driveway that stretches about sixty metres (two hundred feet) to the road an image suddenly came to me of a road covered in red, yellow, and orange leaves much like our driveway is this morning. Unlike our driveway, however, it was clearly a one-way road and a dead-end to boot. I daydreamed about walking along this road, but as I walked, it became obvious that the end of the road was not clearly defined. It seemed to recede into a fog away from me with every step I took. 

So, my brain is being metaphorical on me, sending me covert messages about my future. 

We (Carolyn and I) had a meeting with a palliative care doctor a few days ago. I’ve been feeling abandoned by the oncologists that have overseen my case for the last many months. I guess I needed some assurance that I would get effective care from the palliative care team at the hospital here. I don’t mind going down a one-way, dead-end road, but I’d rather not go it alone if I don’t have to. 

It may be that abandoning radiation treatments has hastened my ultimate demise, but it couldn’t be for long. I remember vividly the spiking fevers I got after my last radiation treatment and the ridiculous stay in hospital while the ER doctors chased an infection that I don’t think was ever there. That doesn’t mean that it would happen again, but I’m loathed to take that chance. Myeloma is an infection, a growth of unwelcome protein in the blood that takes up space in my bone marrow and doesn’t prevent ‘good’ protein from doing its job. That’s what it is, an infection, and it will cause all kinds of effects including fevers. I just don’t need the treatment for myeloma to be worse than the disease itself. Now if I get a fever, I’ll know it’s because of the myeloma itself and not one of its treatments. 

And now we wait.

I’m not sure what we’re waiting for either. It may be a turn for the worse, meaning the reoccurrence of a nasty fever, which this time, won’t go away. Or it may be an attenuation of symptoms and a reprieve of sorts from the worse of the nastiness brought on by chemotherapy. Whatever. All I know for certain is that I don’t know. Well, there are things I do know for certain: I’m seventy-five, soon to be seventy-six. My maternal grandfather, Georges Leguerrier, died in 1975 at the age of seventy-eight. His wife, Julianna, my grandmother, died in 1989 at the age of 91. My father died at 95 years of age in 2007. My mother was 94 when she died in 2018. So, generally, my family is quite long-lived. It may be that I take after my maternal grandfather, Georges Leguerrier, who died at 78. I can’t imagine I’ll live as long as my other grandparents or my parents, for that matter. 

November 19th, 2022

It’s Saturday, 7:38 AM, and very cold, (-2˚C) at least for here. (Yesterday was even colder) But it’s crispy and dry too. The air is perfectly still. The house is warm and cozy. 

I’m feeling okay despite the increase in opioids I’m taking.* The pain in my legs seems to be attenuating. I walked to the bathroom without my cane this morning and it was not a problem. Now, I’m sitting in my recliner, and I don’t have any pain to speak of. It feels good for a change. I’ll walk down to the studio in a bit to put on some heat. I can’t let it get too cold or the paint freezes and becomes useless. Who knows, I may be able to use it sometime. 

It’s strange, but in my half-sleep this morning just before getting up, I flashed on me working on a painting that’s half finished in my studio. Twenty years ago, or even ten years ago, I wouldn’t have thought twice about going down to the studio to work on that painting and maybe a couple of others I have half finished. I may still be able to paint, maybe with watercolours for the most part, but only if I don’t have to stand at the easel. I think I can work that out. Still, I have to remember that what I was able to do without too much thinking involved ten years ago, I now have to seriously ponder. I may have the knowledge to do something, but I also need the stamina, and it’s the latter that is lacking in my life now. It’s simple really. For some time, I thought that knowledge was all that I needed. Then I realized through trial and error (much error) that no, I need to be able to sustain activity for some time if I want to get anything done. Getting older (and weaker), whether in good health or not will inevitably mean less energy and stamina. So, now, I don’t feel bad about napping in the afternoon, and maybe even in the morning if I’m feeling particularly sleepy. Napping is fine for people my age. Not all of us nap, but for those of us who do, we have to just accept it and relax about it. 

I could say the same thing about dying but dying and napping are obviously not the same. There is a certain finality in dying that is just not there in napping. 

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*Opioids contribute to pain relief, but they also can leave me sleepy, dizzy and cognitively dull. This morning I woke up without a lot of pain and fairly sharp (if I do say so myself). 

A Time to Die?

~ Roger JG Albert ~ 21 Comments

Well, howdy there internet people, it’s me again. Visited my local GP/oncologist this morning. He showed us images of the growth that is happening alongside the left side of my spine. I think it’s trying to replace the kidney that I lost in 2002. It’s big enough. Just kidding, of course. The growth is pretty impressive, let me tell you. I’m not feeling any ill effects from it at the moment because it hasn’t gotten into my spine. If it had, I’d be paralyzed. It is large, however, and nothing to sneeze at. Probably not immediately life threatening, but I have enough other issues to think about that are threatening my life, not the least of which is my age.

I’m feeling very strange at the moment. I am still sentient from what I can tell, although I’ll leave it up to others to confirm. Sentient or not, I’m close to death. From what I’ve read about Medical Assistance in Dying (MAID) people are often sentient until the last minute. Maybe I can shoot for that although being zonked out on morphine has its appeal too as I slip off into death.

My local GP/oncologist is in contact with the oncologist in Victoria at the BC Cancer Agency who looks after my file, and he (Macpherson in Victoria) doesn’t support the idea of my getting another shot with another chemo protocol. I’m done as far as he’s concerned. He expects more chemo would just be futile and would not enhance my life chances a whole lot. I will know the results of my latest bloodwork late next week and that will help me decide as to whether or not I push for a second opinion and for another chemo protocol. Whatever happens, as Carolyn points out, even a new protocol would likely give me just another nine months of life at best, so what’s the point?

It may be time for me to accept the increasingly obvious fact that my life is done. Well, I may have a few more months to live, but not years, certainly not years. I don’t know, but going off chemo may give me a few months of relief from side effects. That would be nice. Already, I’m starting to feel my lips again. Lips I couldn’t feel, constant sore eyes, and plugged ears were Daratumumab/lenalidomide side effects. Since I stopped infusing Dara things have settled down. Carfilzomib has its own issues, but so far I have been able to deal with them. Whatever happens, I could still take hydromorphone for pain, and maybe even increase my dosage. I mean, what the hell do I need a brain for anyway? [Well, maybe for writing a few more blog posts!]

Then, when the time comes, I just give the Hospice Society a call. I may opt to die in a Hospice bed, but I may decide to die at home, although I don’t thing I want to put my family through that. Caregiving is tough enough as it is. It’s true that watching me die might be okay with them. I don’t know. We’ll have to discuss it. MAID is definitely an option. We have discussed that.

I, along with many of my siblings and relatives, sat around and watched my mother die in her bed at The Dufferin in 2018, the care home in Coquitlam she lived in for many years with my father before he died in 2007. She had dementia quite badly for the last few years of her life, and as she lay there dying she had no idea about anything, which is consistent with the last 25 years of her life. The nurses just kept pumping morphine into her veins. That kept her quiet. I suppose I could tolerate an ending like that, but I don’t have dementia. I would probably be conscious and sentient until the end. That’s fine as long as I got the morphine too. I’m not a big fan of pain.

I told my local GP/oncologist that I may go for a second opinion. I may. I may not. Probably not. It all depends on how I come to accept my end times. I find it hard to even think about death and dying. It doesn’t come easily to my imagination. Oh, every once in a while I lay in bed just before falling asleep in the evening and I think “What the heck? When it’s done, it will be done. No regrets.” Then, I get scared. I imagine myself in a cardboard box on my way to the crematorium on the hill. That’s fine, but I need to know that I’m really dead before that happens. I’m not keen on feeling fire on my skin. Of course, I’m being silly. I will definitely be dead by then. My box is on a conveyor belt. There are a couple of bodies ahead of me laid out in fancy coffins. They’ll burn real good! I’ll have to wait to get turned into ash powder. But it will happen. Later, someone will give my family a package of ashes that will have been me. I don’t care what they do with it, but I hear that the family has a cemetery plot in Vancouver. My wonderful niece arranged that. So, that’s it.

Goodbye life.

PS: I’ll write my obituary sometime. Not just yet. You’ll have to wait for it a while longer.

Cancer and self-absorption.

~ Roger JG Albert ~ 8 Comments

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.

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

~ Roger JG Albert ~ 6 Comments

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.

Sleepless in Cumberland

~ Roger JG Albert ~ 4 Comments

Yesterday was my day at the hospital for my monthly infusion of Daratumumab, the monoclonal antibody. It along with other flavours of monoclonal antibodies have changed a lot about how medicine thinks about and treats cancer, arthritis, and other nasty ailments of us fragile mortals. Along with my Dara, I also take some dexamethasone, only 12 mgs for the month, and a few other meds designed to protect me from viral infection. It’s the dex that keeps me awake as I’ve noted many times on this blog. 

So, instead of lying awake, allowing whatever thoughts I had rattle around in my brain causing no end of silly talk, I decided to read instead. Reading is a good way of filling in the night hours in what some people would call a ‘progressive’ way. However, I may need to revise the material that I choose to read at night. I haven’t read a lot of fiction in my life, focussing my reading time on sociology, anthropology, philosophy, and other sundry disciplines. I have read most of Kurt Vonnegut’s work, all of Emily St. John Mandel’s books and I did recently read several books by Kim Stanley Robinson, fictional accounts of the human colonization of Mars, New York under flood, and other similar topics. In his Mars trilogy one interesting commentary was on longevity. If people accepted a certain treatment, they could live hundreds of years instead of the paltry number of years generally allotted to our species. That fact, however, did not seem to mitigate the angst they felt about death and dying. In a book called Aurora, Robinson is at his most pessimistic about human excursions to other planets and their satellites in our solar system. His conclusions about the time it takes to travel from Earth to other planets are telling. Travelling to and back from a satellite of Venus, for example may take a hundred and seventy years or more with the need for cryogenic sleep. So, if you were one of the ‘lucky’ ones who won the lottery for space travel you would return to Earth after several decades of travel at a time when no one would know you, you would have no recognizable family and you would be relegated to the margins of society. I read Robinson at night. It was a bit hard to get to sleep after reading some of his stuff, but not impossible. Reading Barbara Ehrenreich and other non-fiction writers of her ilk is an entirely different story (no pun intended). Last night I finished reading her book Natural Causes: Life, Death, and the Illusion of Control. This book is firmly planted in reality. Problem is reality sucks sometimes. Ehrenreich is especially blunt when she writes about aging. Getting old is no cake walk. It’s not for the faint of heart although in our culture it’s not cool to ‘give in’ to the infirmities of age. Ehrenreich writes:

“But as even the most ebullient of the elderly eventually comes to realize aging is above all an accumulation of disabilities, often beginning well before Medicare eligibility or the arrival of the first Social Security check. Vision loss typically begins in one’s forties, bringing the need for reading glasses. Menopause strikes in a woman’s early fifties, along with the hollowing out of bones. Knee and lower back pain arise in the forties and fifties, compromising the mobility required for “successful aging.”” (from “Natural Causes: Life, Death and the Illusion of Control” by Barbara Ehrenreich)

And:

“Not doing anything is the same as aging; health and longevity must be earned through constant activity. Even the tremors of Parkinson’s disease can be seen, optimistically, as a form of health-giving exercise, since they do, after all, burn calories. The one thing you should not be doing is sitting around and, say, reading a book about healthy aging. There are bright sides to aging, such as declines in ambition, competitiveness, and lust.”*

So, we must always put a happy face on adversity, be positive about everything, and keep moving. I don’t think my nine hours a day sitting with my computer on my lap would be morally acceptable. But you know what? I’m finding it a wee bit difficult to feel positive about dying. A Cumberland friend, Howard Jones, who died recently spent his last few days in the hospital. He couldn’t breathe on his own much anymore. Months ago, over coffee he confided that he didn’t know how long he could continue on oxygen with a life very much reduced to sitting or lying in bed. He could no longer walk in his beloved forest. I meant to visit him in the hospital when I was there for my usual chemo treatment, but I was cautioned not to because of my compromised situation. I should have gone anyways. Now it’s too late. We did text each other, but that’s not the same as a face-to-face visit. One day, the day he died as far as I know, he was the one to make the decision to go off oxygen, thus ensuring his death. I think that Howard died a good death. 

The especially difficult decisions I know I will face in the near(ish) future will be whether I continue with the chemotherapy that has so far kept me alive. I will be thinking of Howard when the time comes. I expect that my (and my family’s) decision will hinge on the quality of life my treatments are now offering me and the intensity of their side effects. There is a question of how much benefit a few months of life can give in the face of much reduced quality of life. It will not be an easy decision. I love life, I love my family, my community and where I live. I am loathe to give that up, to know that the world will carry on without me. But it’s not like I or any of us have a choice in the matter. We all die. Some of us, however, are given the privilege of deciding when and how we die. 

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*I’m reading Ehrenreich as an ebook on a Kindle. The problem with that is that when I select a quotation to use on my post, it doesn’t give me a page number. I find that unacceptable and will see if I can find a work around.