Roger Albert

36 Me, my Body and I: Part 2

~ Roger JG Albert ~ 9 Comments

To begin I want to dwell for a minute on Sigmund Freud’s ideas about the human personality. It’s a secular formulation, not surprising as Freud was an atheist. I’ll get to more religious formulations in a bit but Freud shows how personality can be conceived as being made up of three ‘parts’: the id, or libido (sexual energy), the ego, and the superego. The ego, in this scheme of things as I understand it, is the part of the personality where the needs of the id and the superego are negotiated and worked out. The superego is that manifestation of the human personality that accounts for social norms, values and morality. The fact is that the id, ego, and superego are not really ‘parts’ of the human personality, but manifestations of the various and often contradictory needs inherent in the id and superego. In other words, they are not things and can only really be identified by what they do or manifest.

For example, the id of a young man (I can attest from personal experience) may be consumed, or at least, pre-occupied with thoughts of sex, sex and more sex. The superego, on the other hand says, wait up there cowboy, you can’t have sex with anyone or anything at any time. There are social rules around these things. Listen up! NO sex with your sisters, brothers, or your mother, nor with sheep, goats, or monkeys! You hear? The id counters by arguing: well, what am I supposed to do with all this energy? You tell me I’m not even allowed to masturbate! That’s not fair! In these ‘debates’ sometimes the id wins, more often the superego does. There are people who have no social conscience or social ‘brakes’ to their behaviour. We call them psychopaths or sociopaths. People with rampant, out-of-control ids can be very dangerous as sexual predators and can be uncontrollably violent. Freud’s scheme has to be considered along with other aspects of what it means to be human such as bodily integrity, intelligence, and upbringing. Personality is very idiosyncratic if you haven’t noticed. It’s all very complex but it’s what accounts for our individuality.

What Freud’s personality scheme does for my purposes here is to highlight the fact that we can easily conceive of our personalities made up of semi-independent parts. This idea is integrally important to the religious, spiritually-minded, and Christian (certainly) notion that we are made up of body, consciousness, and soul, different aspects of us that are related but have a life of their own, so to speak. To think of the soul as immortal, it’s critical to separate it from the body which dies although some religionists, especially Darbyists* (who would probably find the 1991 film Rapture right up their alley), would prefer to go to heaven with their bodies intact. Rapture (the film) depicts end-of-time second coming of Jesus and the ascension of the human body and soul to heaven. Some religionists are very keen to see their physical bodies live eternally but they’ll settle for their consciousness or soul carrying on after their bodies die.

This is the position of Miguel de Unamuno, the Spanish Basque scholar who was for a long time the don of Salamanca University in Bilbao. I introduced you to Unamuno in one of my recent posts. I refer to Unamuno here because he is such a keen advocate for the immortality of the soul. He published The Tragic Sense of Life in 1920. It’s a rambling poetic rant and an impassioned plea to realize the limitations of reason in coming to grips with the most important problem he reckons facing us all and that is the immortality of our souls. For Unamuno, the longing for the immortality of our souls is what makes us human. He writes:

“That is to say that you, I, and Spinoza wish never to die and that this longing of ours never to die is our actual essence. Nevertheless, this poor Portuguese Jew, exiled in the mists of Holland, could never attain to believing in his own personal immortality, and all his philosophy was but a consolation which he contrived for his lack of faith. Just as other men have a pain in hand or foot, heart-ache or head-ache, so he had God-ache. Unhappy man! And unhappy fellow-men!” (from “The Tragic Sense of Life” by Miguel de Unamuno, Kindle Edition, page 43)

According to Unamuno, except for a few minor and aberrant individuals and groups, humans have throughout history consistently believed in the immortality of the soul. That commitment and longing for immortality that is at the very core of our beings and is effectively an instinct of perseverance as Unamuno sees it is our membership card in humanity. If we don’t believe or if we insist on finding a logical, reasonable explanation for the immortality of the soul then we are evil, wicked people who refuse to be a part of the human community. Unamuno can surely be called a hero in the social imperative of death denial. He finds atheists and non-believers of all sorts abhorrent. “If consciousness is, as some inhuman thinker has said, nothing more than a flash of light between two eternities of darkness, then there is nothing more execrable than existence” writes Unamuno. Life, for Unamuno is absolutely meaningless if the immortality of the soul is not the prime human fact and goal. Unamuno is very keen to separate reason from life. He says reason cannot prove one’s immortality, only life can, and it’s a question of faith. The soul has primacy in Unamuno’s scheme of things and is his ticket to immortality. Interestingly, he’s not as concerned with the existence of God as he is in his own immortality.

A more contemporary aficionado of the immortality of the soul is Ram Dass who just died recently. He believes that the soul must exist and it must be immortal because otherwise our earthly lives are meaningless. He writes:

“To be here for fifty to eighty years only to be annihilated at the end just doesn’t make sense. Nothing else in the universe is that inefficient. We have to be here to learn; otherwise our difficulties are truly meaningless. For the Ego, the roles we grow into and the positions we hold at the pinnacle of aging are the culmination of life. For the Soul, learning is the culmination. When we expand our self-image to include the Soul, we notice a marked shift in our personal consciousness, a liberation from the small egotistical self into a far more spacious context. From this Soul level, we are able to view our Egos from the outside in. This allows us to observe our minds and bodies in ways that will seem new and surprising, as if the trapdoors of the “self” have been opened and we can finally step outside, enjoy the view, and put a welcome distance between who we are (from Soul’s perspective) and the suffering we experience at the level of body and mind. Thus, with practice, we cultivate the tremendous healing of knowing ourselves as spiritual beings, too.” (from “Still Here: Embracing Aging, Changing, and Dying” by Ram Dass, page 28)

Well, I see a lot of problems with Dass’ non-sequiturs to start off . Why doesn’t it make sense that we are annihilated at the end of lives? And ‘nothing else in the universe is this inefficient’? What kind of silliness is this? Efficiency as a criterion for the immortality of the soul is ridiculous. Dass would be much better off just borrowing arguments from Unamuno than putting forward illogical ‘reasons’ for the immortality of the soul. Furthermore, he argues that we can see ourselves from “this Soul level”. Magical thinking indeed! But Dass appeals to a large audience of people intent on believing that when they die, they don’t really die because their souls carry on into eternity. I can seriously say that I’ve explored the implications of this idea through years of study, introspection and meditation, including, like Dass, the use of hallucinogens. Frankly, I just don’t see the point in adding a fictitious construction called the soul to our personalities. In a way (and I’m sure I’ll get up some people’s noses for saying this) it strikes me that believing in the immortality of consciousness or the ‘soul’ requires a great deal of collective narcissism and chutzpah. Where do we get off thinking we’re so special under the sun that we get to live eternally and no other life forms do? Note that I write ‘collective’ narcissism. As individuals we have no reference other than social ones to decide what to believe. We can be the humblest of individuals yet still be trapped in the overarching cultural imperative for apotheosis via immortality.

Of course I DO argue that in a sense we DO live eternally, just not in our current human configuration or through the ‘soul’. I know that I’m now a long way from discussing myeloma and my daily grind under its treatments. That is so. However, it’s important for me, as I approach my inevitable death whether it happens in six months or ten years, to clarify my point of view. There’s a certain amount of catharsis going on here, no doubt. Most people want to live forever. Not me. I’m perfectly happy to see my consciousness evaporate when my heart stops and at that point all the atoms and molecules that made up my body will be free to go. Have fun, little buddies!

In the third post in this series coming up shortly, I reflect on the works of Emile Durkheim and Ernest Becker. Both worked as social scientists. Durkheim died in 1917, Becker in 1974. Both had a lot to say about the soul and the sacredness of society as a source of the personal sense of immortality. Both have played a large part in my intellectual life but Becker sticks with me much more viscerally than the cerebral Durkheim. Both argue in their own way that the power of religion lies in society.

Stay tuned.

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* “Though Darby may have burned his bridges, his message gained a larger and larger following. Today his dispensational premillennialism is the view of many modern fundamentalists and conservative evangelicals.” From: https://www.christianitytoday.com/history/people/pastorsandpreachers/john-nelson-darby.html

35 Me, my Body and I: Part 1

~ Roger JG Albert ~ 4 Comments

I’m quite attached to my body. Frankly, it is a long way from perfect, but I’ve grown fond of it over the years and have become increasingly tolerant of its idyosyncracies and foibles. It’s served me well in lots of ways. One special way it’s done so is by helping to create my two daughters thus ensuring genetic continuity for me and Carolyn. It can’t take a lot of credit for that, Carolyn having done most of the heavy lifting, but still, there were moments of joyful participation in the magical process by which my daughters were conceived and born.

Now, however, my body has decided that it’s getting time to move on. It seems to be quite relentless in this idea. My body has an intelligence of its own, as does all life on the planet. It’s not going to sit still. Life is about change. I’ve pretty much come to grips with dying. I understand it intellectually and am now in the throes of living it. Death is an ultimate form of disengagement from the world for me (I), but in another sense it’s just another form of re-engagement for all the atoms and molecules that make up the complexity of the structures in my body.

For me, as I’ve noted before, we are the stuff of stars. Translating that into language closer to home, it means that the material that makes up my body and all life on the planet has always existed and will always exist as long as the universe is around to sustain it. According to Brian Cox, the universe itself is finite so all bets are off as to what happens to matter and energy in billions of years when the universe itself is worn out and darkly still. For the moment, however, we can say that the universe is the ultimate driver of life on earth and anywhere else it might exist in the cosmos. “Life” here needs to be conceived in very broad terms and not just related to biological organisms. Galaxies can be said to have a life span, mountain ranges and continents too. Nothing is forever. Nothing.

There are two aspects of myself that are of interest to me for this discussion: what happens to my body after death and what happens to my consciousness. These are no longer arid philosophical considerations, they have never been closer to home in a real visceral sense for me, and are mobilizing all of my intelligence and emotional energy.

Without sounding too arrogant, I think I have both of those pretty much figured out after fifty years of study, thought and introspection. As far as my body goes, it’s quite simple, really. I’m a big proponent of simplicity in the search for solutions to life’s problems. That means that I adhere to the philosophical principle called Occam’s razor, or the idea (without being too simplistic) that the simplest solution to a problem is probably the best.

“Antoine Lavoisier described the law of conservation of mass (or the principle of mass/matter conservation) as a fundamental principle of physics in 1789.” That formulation was followed later by the law of the conservation of energy and later still, after Einstein, by the law of the equivalence of mass and energy or the idea that mass can be transformed into energy and vice-versa, but neither can be lost in the process. Bringing this idea down to my level, it is my sense that what makes up my body has always existed and always will, giving me a real sense of connection with all life on the planet and a very real sense of continuity with all life, past and present, including with my ancestors. Put simply, when I die, my body and all of its constituent elements return to the pool of raw materials available for the construction of new forms of life, as I’ve noted before. I can’t emphasize enough the notion of continuity here. In the face of my immanent annihilation, I take solace in the notion of my intimate connection with life in the cosmos and as part of an ongoing process of life. That still leaves me with a problem. What about my consciousness?

I think that my consciousness, when my heart stops beating, will no longer exist in any way, shape or form. Why should it? My consciousness is organically tied to my body and cannot exist without that living connection. Break that connection and the light goes out. So, in anticipation of my death, I may mourn the loss of consciousness above all. That doesn’t mean that I think it has any means or justification for existence beyond the demise of my body. Remember Occam’s Razor. I see no need at all for any supernatural intervention in all of this, something I think is unnecessary given the perfectly plausible and simple scientific explanations available to explain life and its continuity. It seems I’m probably in a minority on this one.

Now, if I were to write a play based on what I’m going through at the moment, I would surely incorporate as a basic plot line the plethora of imaginative constructions (ideologies) that argue that consciousness does not die with the body, but has a life of its own and goes on ‘living’ after the heart stops and all brain activity ceases. I’d have to put my own ideas of continuity up against the age old ideas of the perpetuation of consciousness beyond bodily death. I can envision a Waiting for Godot or My Dinner with Andre type of play. Frankly, I’m perfectly content with the idea that my consciousness will not outlive my body. It’s the simplest and most elegant solution in my mind although it has some serious social implications that I need to explore next. However, in the play I envision, proponents of the immortality of consciousness and/or the soul would need to have their say.

It’s not a huge stretch to go from the perpetuation of consciousness after death to the idea of the soul and its existence independent yet connected to the body and its survival post-death. The ethnographic literature is full of descriptions from ancient cultures about the role of the soul in human life and its immortality. Sociology addresses modern versions of this idea. It seems that for millennia, humans have been loathe to entertain the possibility of total and absolute death and have been, across the board, wedded to the idea of the immortality of the soul even more than they have espoused the existence of God or any other supernatural force. Thousands of religions and their associated churches or societies have come up with often contradictory ideas related to the makeup and activities of the soul and its place in the universe. These contradictions have often been the source of violent confrontations and pogroms, because if my idea of how to get to heaven is the right one, yours has to be wrong and I’ll kill you to show how much more powerful my conception is to yours. These are ideas I need to explore in part 2 of this post.

Stay tuned for part 2 which I’ll release on Sunday, March 8th.

34 To live and to die.

~ Roger JG Albert

Yesterday we went to the lab for the nth time so that the tech might gather some of my mucky blood for analysis. My last trip to the lab was fine, but the results were incomplete. Apparently there was a problem with one of the samples that had to be shipped to Victoria so the results weren’t available to us. Samples requiring electrophoresis in their analysis are sent to Victoria. Apparently there have been some issues with the transport of samples. Maybe the samples coagulate on route, maybe they get lost. Who knows. All I know is that the results of these lab tests tell me how I’m doing and can give me confidence in asking the right questions of my oncology team. It’s okay this time because I just got a new set of tests. They’d better come back readable, that’s all I have to say about that. Hear me VIHA? Now, on to more important things.

I wrote this at the end of my blog post entitled Overdiagnosis? I promised to get back to it so here we go.

In my view, my destiny is to die. Like all other living things on this planet, living and dying are the same process and life depends on death for its continuation. No death, no life. I feel that in my very bones! That’s where my oncology team is doing battle with my own body to try to keep me alive a while longer. Of course, eventually whatever the oncology team will do won’t be enough and I’ll die.

So, how exactly does the body shut down as it’s dying? Cancer may very well be one (a very important one) of the mechanisms that is ‘natural’ in its role in having us die. Maybe cancer is not the pathological evil that it’s made out to be. What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? How can we figure that out?…I think science and medicine have a lot to learn about us yet.

So, let me address one question at a time. Our bodies are ephemeral things, programmed to ‘die’, which means programmed to return them to the pool of raw material available to other organisms as they organize matter into various structures, themselves programmed to ‘die’. The body ‘shuts down’ in a number of ways depending on circumstance at the time of death. If you get shot in the heart, the process is quick, but immediately cells ‘know’ what’s going on and act accordingly. When my mother died, the nurse in the care home where she lived explained that staff can tell when a person is close to death by looking at their feet and legs. The weaker the heart gets, the less it can pump blood to the extremities. That means that the feet, then the legs show progressive signs of blood loss, losing colour and tone. Maybe that will happen to me. Whatever the circumstances, our bodies are prepared for the moment of death and ‘know’ what to do. Our minds are another thing. I’ll get back to the mind in my next blog post.

Cancer is as natural a process as muscle building. In my case, the likely culprit in triggering my myeloma is an oncology gene, not a factor exterior to my person like an environmental carcinogen, and my immune system was likely complicit in making sure myeloma spread to all of my bone marrow. My bone marrow, it seems, just got tired of producing marrow and started to produce myeloma protein instead, crowding out the cells that produce hemoglobin and other healthy blood cells. I really don’t think that that is a pathological process. Pathology implies that there’s something wrong with the body breaking down and dying. There isn’t. Dying is as natural to us as being born. The problem is that our big brains have a hard time letting go so they unleash our minds in a futile battle against entropy. Ultimately, they deny death itself. We’ll get back to that next post.

I think it’s reasonable to ask the questions I pose above: What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? If cancer and other ‘deadly diseases’ didn’t exist we’d die from other causes. Simple as that. So, if medicine eventually ‘cures’ cancer or heart disease, or stroke, it will just have to move on to do battle with whatever other cause is determined to kill us. Scientific medicine is based on a pathology model so is organized to do battle with disease and death. That means that it assumes that there are normal ways to be a human and pathological ways. The idea is to ‘fix’ the pathological ways to bring the human back to ‘normality’. Unfortunately, there is no way to fix death, although there are a variety of ways of conceiving of death (but that’s the subject of my next blog post.). So what would happen if science gave up on the pathology model? It would have to study what is ‘normal’ human development, and not be fixated on correcting what “goes wrong”. It would have to cease thinking of disease and death as evil. Of course, evolutionary models are gaining in importance and they aren’t pathologically based. Furthermore, I’m sensing glimmers of the recognition of the weaknesses in the pathology model in the medical clinic, but pathology is a strong draw and won’t likely go into abeyance anytime soon as a favourite basic framework for the practice of medicine. I figure that until science and medicine face reality, the suffering sometimes caused by attempts to prolong life will have to be closely scrutinized along with the Hippocratic oath, and we won’t be able to deal with death as a natural part of life. So where does that leave me?

I can tell you that I’m not convinced that chemotherapy is the best course of action for me. Yes, it will likely allow me to live longer, but how long? And in the meantime, I get obsessed by my lab results and Carolyn and I reckon time by where I am in my chemo cycle and how that makes me feel. Not sure that’s such a good thing.

32 This is no fun at all.

~ Roger JG Albert ~ 3 Comments

Well, this is no fun at all.

I’m not silly enough to believe that a life with myeloma would be fun, but I’m kind of disappointed that it’s been such an unmitigated downer. I am, I can now see, destined to drag this goddamned disease with me into the grave. Come on, I knew that! Still, a bit of a break now and then would be welcome. Is that too much to ask?

Actually, I think the nastiness I’m experiencing in spades right now stems mostly from the chemo meds rather than from the myeloma itself. This past week would support my idea that the meds are as bad as the disease at the moment for making me feel tired, dizzy, and in pain.

I went to the hospital on Thursday for my bortezomib shot after taking all the rest of my chemo drugs in the early morning. I expect Thursdays to be non-days, and this one was certainly that. A non-day is one when I can’t gather enough strength to do much of anything. However, Friday and Saturday also turned out to be non-days and Sunday wasn’t much better.

I felt a little beaten down. Of course, I should have expected it because my local oncology GP did warn me that they were going to ‘challenge’ me with my chemo med doses. No more mamby-pamby half doses for me! I was to get the full meal deal! Yes, indeed. Silly me.

Then I figured that maybe I needed a good dose of positive thinking to counteract all of these drugs. Maybe all I needed was a little endorphin fix. After all, I used to teach positive thinking on the Knowledge Network back in the ‘good ol’ days’ of 1986 to 1992. I used to teach as Ehrenreich points out “that on many levels, individual and social, it is good to be ‘positive,’ certainly better than being withdrawn, aggrieved, or chronically sad.”*

The problem is I’ve learned a few things since the early 1990s, not the least of which are the limitations of positive thinking. The American Cancer Society on its website states very clearly:

An important part of coping with a cancer diagnosis is recognizing emotions and feelings. Treatment that deals with our emotions and relationships (sometimes called psychosocial interventions) can help people with cancer feel more upbeat and have a better quality of life. But there’s no good evidence to support the idea that these interventions can reduce the risk of cancer, keep cancer from coming back, or help the person with cancer live longer. Still, things like group support, individual therapy, mindfulness, and relaxation techniques can be used to help reduce distress and cope with the emotions that come with a cancer diagnosis.

https://www.cancer.org/cancer/cancer-basics/attitudes-and-cancer.html

So, it seems that belonging to a support group has some positive effects, not on survival or anything like that, but in feeling less tired and in stress reduction. There is a support group in the Valley. I haven’t attended any of the meetings yet. I’ve been too goddamn exhausted to do that until now, but maybe next month! Then, maybe I’ll be less tired!

The American Cancer Society, on its website, starts off with this: When a person is told they have cancer, they might find themselves wondering:

  • Did I bring the cancer on myself?
  • Can my emotions really make cancer grow or affect the outcome of my treatment?
  • Can I control the tumor growth by visualizing how my body is fighting the cancer or by thinking myself well?
  • Would relaxation or keeping a “positive attitude” help cure my cancer?

I can easily reply an emphatic NO! to all these questions and the website goes on to refute each in turn.

Ehrenreich writes:

In the rational explanation that many psychologists would offer today, optimism improves health, personal efficacy, confidence, and resilience, making it easier for us to accomplish our goals. A far less rational theory also runs rampant in American ideology—the idea that our thoughts can, in some mysterious way, directly affect the physical world. Negative thoughts somehow produce negative outcomes, while positive thoughts realize themselves in the form of health, prosperity, and success.✤

The upshot of the idea that negative thoughts produce negative outcomes is the notion that people bring their diseases on to themselves by thinking negatively. Never mind that this idea is completely debunked by the American Cancer Society and people like Barbara Ehrenreich, there is a strong current of belief ‘out there’ that we are the victims of our own negativity. That goes for people with chronic illnesses, auto-immune diseases, and cancer. If you’ve got it the ‘reasoning’ goes you’ve brought it upon yourself.

This of course dovetails nicely with the predominant capitalist morality in our culture which states that individuals are inherently responsible for their actions and weakness of all kinds is abhorred, shunned, and denigrated. If people exhibit any signs of weakness, whether they are poor or in ill-health, it stands to reason that they must be responsible for their condition. That’s why people, especially those caught up in a full-blown subscription to capitalist morality, often go to great lengths to hide their poverty and ill-health. They are also the ones that tend to judge most harshly the poor, the homeless, the disenfranchised, the physically disabled, the chronically ill and the aged, even if they themselves could be included in any one of the categories I just mentioned.

Myeloma is a disease of the bone marrow. It’s entirely organic. As of yet there is no cure for it. It will not respond to positive thoughts or negative ones either, for that matter. Ehrenreich writes that “There is a vast difference between positive thinking and existential courage.” ✦ If there’s anything I strive toward it’s existential courage. However, if you catch me in a moment of deep angst over my imminent (yes, ten years is imminent) death, cut me some slack. I can’t always be perfect!

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*Barbara Ehrenreich, Bright-Sided: How Positive Thinking is Undermining America. 2009. Kindle Edition, Location 89.

✤Ibid., Location 125.

✦Ibid., location 145.

30 Living in the Shadow of Death

~ Roger JG Albert ~ 4 Comments

Strangely enough, I find myself wondering about what it would be like to live on death row.

We don’t have death rows in Canada, but there are about two thousand six hundred Americans in twenty-nine states right now sitting in cells awaiting their deaths by lethal injection or by other means, depending on the state. Most are still waiting for their date with the devil because they can appeal in so many ways and it seems that the average time now spent on death row is over sixteen years. There is an increasing hue and cry in the US about the time people have to spend on death row arguing that the wait itself is “cruel and unusual punishment.”

…the European Court of Human Rights in 1989 ruled that extended periods on death row violated a provision of the European Convention of Human Rights that forbids “inhuman or degrading treatment or punishment.” While acknowledging the legality of the death sentence in certain cases, it nonetheless forbade Britain to deport a German man to Virginia to face capital charges because he might spend years on death row facing “the anguish and mounting tension of living in the ever-present shadow of death.”

https://www.bnd.com/living/liv-columns-blogs/answer-man/article151691567.html

Right, “he might spend years on death row facing ‘the anguish and mounting tension of living in the ever-present shadow of death'”. Well, you know, I’m feeling a little like that myself, actually. I’ve been told I have an incurable cancer, but one that can be treated. It looks like I will go into remission sometime, probably in a few months, but who knows for how long. After that, if my myeloma doesn’t react to new treatments upon an inevitable relapse, I will surely die from organ failure. So, I wait and wait and wait not knowing if my next chemo treatment will work or not. The end result is preordained, however. No getting around that. How is this different from a death row inmate who applies for an appeal for his terminal sentence not knowing whether or not he will be successful? If he is successful this time, what about the next time? He knows that at some point the avenues for appeal will run out. When that happens he will suffer from organ failure like me, but that will be a systemic, total failure of all bodily systems as he lies there on a gurney in the execution room being administered a lethal injection of a deadly concoction of poison.

The analogy I use between my cancer diagnosis and a death row sentence is certainly not perfect. No analogy is. For instance, I don’t have to spend the bulk of my days in a small cell with bars. Nor do I have guards watching over me. That said, the comparison between my myeloma diagnosis and a death row sentence is fair if focussed on the psychological dimensions of an indeterminate cancer survival prognosis and an indeterminate execution date for the death row inmate. Chemotherapy is akin to an appeal: both buy some time but just postpone the inevitable.

I imagine that death row inmates are not pre-occupied twenty-four hours a day with the fact that they will eventually end up on the gurney in the execution room more than I am focussed all the time on the fact that my cancer is incurable, and hence terminal under the ‘right’ conditions. It’s just that the uncertainly of the situation is combined with the certainly of the outcome. That is disconcerting to say the least. I am definitely living “in the ever-present shadow of death”, but, of course, we all are. My shadow is possibly more opaque than yours at the moment, that’s all. Until I got my ‘death sentence’ I could go about my days thinking about projects I was doing, walks we would be going on, trips we would take. Now, it’s not so easy to do these things. Oh, it’s still possible, but utter exhaustion, chemo, lab and doctor visits, imaging sessions, etcetera, complicate things. I can only hope things will be different when I go into remission. I have a canoe that needs a new canvas skin and I have a sculpture I want to complete.

This all brings me back to the ‘value’ of sudden death. Sudden death does have a very important feature: its suddenness. No time to think about it, no time to live in anguish, etcetera. Looks like I won’t have the luxury of a sudden death. Maybe I will, we never know, but the way it’s going now, it’s not likely. So I have to figure out another tactic, or set of tactics to deal with the uncertainty of my life but with the certainty of my imminent death.

Problem is my death is not just about me. Yes, it’s an intensely personal experience, but other people are involved. Is it fair for anyone to focus so much on having a good death that they ignore everyone around them? Is it okay to be completely selfish about our own dying?

According to this op-ed in the Los Angeles Times, dying at home, although it seems like a reasonable thing to do, entails consequences, especially for care givers, and especially when home support and respite care are not available. This op-ed provides me with a not-so-subtle reminder to get my living will done. I probably shouldn’t procrastinate on that one.

28 Moving on up.

~ Roger JG Albert ~ 6 Comments

So, I’m over the shock of my cancer diagnosis. It’s been four months, after all. That doesn’t mean I’m happy about it, but it does mean that we (and I have to include Carolyn in everything here) have moved on from the initial storm of emotions around the diagnosis to settling in for months of chemotherapy and complete disruption of our lives. We are moving into a new routine. Every day is almost predictable, at least for now. I can’t say that I’m bored at this point, but I certainly am getting restless. I’ve gone down to the studio a couple of times lately and poked around. I really do miss drawing and printmaking. I want to get back to them soon and I really want to finish a small sculpture I started last year. Problem is I’m so exhausted all the time.

Not all people with cancer have the same reaction to the disease itself nor to the chemo meds and the opioids. Not all cancer patients are anemic all the time and I’m told that not all experience a lot of pain or the exhaustion I’m feeling. Every cancer is different and close to two hundred types have been identified. Breast cancer is the most common followed by lung and prostate cancers although there are several different varieties of all three types of cancers. Multiple myeloma is very uncommon and is the rarest of the blood cancers. Lucky me.

This morning we saw the local oncology GP and he told us that everything is going well with my therapy but that for the third cycle starting tomorrow they will be punching up the cyclophosphomide (the main chemo med) to one hundred percent. I didn’t know this, or I forgot, but I haven’t been up to full dose on this chemical yet. The doctor said that they started me off slowly to ensure that I could tolerate the shit, but now they were going to have to ‘challenge’ me. I have no idea how that is going to affect the side effects I am inevitably going to get except to amplify them. Yep, that’s what I can expect, amplified side effects. Yum.

I also learned this morning that I have six more chemotherapy cycles before they can consider whether or not I’m in remission. That means I will know by late August or early September. Oh well, I didn’t want to do anything this summer anyway, now did I. The way I’m feeling at the moment, I’m thinking that I might be able to get out on some short excursions come the sunnier, warm weather, but laying about the back yard by the pond sipping a cold drink doesn’t seem so bad either. Today is the last day of my previous cycle and the best of the whole lot because I’ve had a bit of a ‘holiday’ from my meds. Tomorrow, I’m back in the trenches with full-blown cyclo, dex, and bortozemib. I had an infusion of zoledronic acid today too, that’s a bone strenghtening drug. It gives me a raging headache so I take a couple of acetaminophen to help deal with that.

I have to get back to the hospital in a couple of hours for a CT scan of my right femur and cervical spine area. My orthopaedic surgeon wants to check my cervical spine for any changes in my degenerative disk disease and arthritis, my other nemeses. He also wants to determine if the excavators in my femur are in any danger of breaking through the bone or not. I’ve been experiencing more pain in the area lately and he wants to stay on top of that. Good for him. I like his attitude.

Enough for now.

27 Well, this is a pain in the ass!

~ Roger JG Albert ~ 4 Comments

Literally. Although technically, the pain is in my hips. But as you know, hips are very close to asses so I feel justified in using the title above.

My hips have been giving me a bit of grief lately but usually only in bed at night. They don’t hurt during the course of the day. I tend to sleep on my side, usually my right side. I’ve noticed over the past few weeks, however, that over the course of a night, I might have to shift my body from my right side to my left side every hour or so. I could take more hydromorphone I guess, to alleviate the pain, but I feel like I need to have some idea of what’s going on in my body. Trying to eliminate all pain all the time seems ridiculous to me. Us humans are built in such a way as pain is pretty much a given whether from overuse, as in doing too much exercise, from injury via trauma, or from things like appendicitis. I want to know what’s going on in my body and it’s pretty hard to do that if I’m always zonked out on opioids.

Pain, pain, pain! I’ve had lots of that in my lifetime although just looking at me you wouldn’t know that. I look pretty good for an old guy. Still, pain has been an expected companion most of my life. Mygawd, in my early twenties I had a laminectomy, a disk removed in my the lower back because of a planer mill accident, but I’ve already mentioned that in a previous blog post. I had to be peeled off the ceiling a number of times from that one. No pain has ever stopped me from doing things, however. It may have stiffled my dreams of being a world-class athlete, but it never stopped me from running and walking fairly long distances, and farting around in my shop and studio. Of course, I had to be careful. Sometimes my back would send out signals for me to back off, and I would, not being a complete idiot.

A few years ago, though, I had had enough with pain and my doctor had had enough of me complaining about pain, I guess, so he sent me to a pain clinic in Nanaimo. Well, that was interesting. I assume that pain clinics are good for pain caused by overt trauma and that sort of thing. My experience is that as far as chronic pain is concerned, they struggle with coming up with good solutions. At the end of my time at the clinic, they were thinking of implanting a tens machine in my side at the site of my 2002 kidney surgery. The site of my kidney surgery from 2002 still pains me. However, I wasn’t about to have a tens machine implanted in my body so the clinic and I parted company. The clinic still exists doing lots of good, I’m sure, and I still exist too, still in pain. Well, there ya go!

Over the last few months, as you know, I have been diagnosed with bone marrow cancer, just another reason to have pain. I have no shortage of reasons to have pain. Now, however, my family doctor is only too happy to prescribe opiates. He’s always been fairly liberal when it comes to prescribing pain medications, but now I especially appreciate his willingness to treat my pain with whatever it takes. One thing is that treating the pain from my bone marrow cancer also has the benefit of dealing with some of my chronic pain issues. That has been good although I’m still in pain. I’m certainly not trying to eradicate all my pain. Feeling pain means I’m still alive. Of course eating sticky buns has the same effect, but that’s a lot more pleasant than feeling pain as an indicator that there is still life in these old (now eroded) bones.

My oncologist, however, seems to be clueless about pain. When we visited him in Victoria last year I was in a lot of pain, obviously so, I thought. He told me to take a couple of Tylenol. He, he, he. A couple of Tylenol? Sure, dude.I can’t imagine he’s ever felt any kind of acute pain so he just can’t relate. Ibuprofen works well for me, but I can’t take anti-inflammatory meds because I have only one kidney. Pity. I think I could avoid a lot of opioid use if I could take anti-inflammatory meds. In any case, my oncologist, in exasperation, I think, because I keep telling him that I’m in pain, and he doesn’t want to hear that, decided that I should go to a pain clinic. Well, I was not particularly receptive to that, but after a little deliberation with Carolyn, I decided to humour him. So. off I go to the pain clinic only it’s not called that.

Yesterday, I got a call from ‘Leanne’ from the Palliative Symptom Management Clinic which has a branch here in the Comox Valley. Now before you get all weirded out by the word ‘Palliative’ in the title, don’t worry, I’m not getting signed up for end-of-life care just yet. Palliative care, it turns out, refers to pain management in general. We’ve come to associate it with end-of-life care, but it doesn’t have to refer to that. Leanna had lots of questions for me like: do you have a gun in the house? Are you depressed? Do you have place for the nurses to park when they come to visit you?

I’m looking forward to seeing what this palliative care group can do for me. The doctors involved may have good advice for how to manage my pain meds. Eventually they can hook me up to a huge bottle of morphine and I can blissfully drift off to permanent unconsciousness, but not just yet. My lab results are indicating that I’m heading toward remission so back off with the bottle of morphine!

We saw my orthopaedic surgeon yesterday and he’s ordered another CT scan of my right femur, the one with the bone excavations. He just wants to make sure the lesion isn’t getting any bigger because it has been more painful lately. So, next week I see my family doctor on Monday, then I go into the hospital on Wednesday for a visit with my local oncology GP, and to get a zoledronic acid infusion. I’ll probably get a CT scan this week too. On Thursday I go back in to start a new chemotherapy cycle, my third! Never a dull moment. Wish me luck!

26 Interesting Days

~ Roger JG Albert

Bortozomib Blues

Well, it’s Monday morning around ten o’clock. The last four or five days have been really interesting. Last Thursday I went to the hospital for my weekly injection of bortozemib, the proteasome inhibitor that I take along with my chemo meds and dexamethasone. My bortozemib injections have always left a type of raised, red rash at the injection site on my belly. To try to alleviate the itching and swelling I took fifty mg of Benadryl to try to counteract the rash and swelling caused by the bortozemib. We also applied Benadryl cream to the injection site. The rash doesn’t hurt per se, but it’s super itchy and I feel like I need to reach down inside of the injection site to scratch my insides. It’s very annoying. Probably more important, though, is staying on this course of treatment. We had to stop a previous attempt at treatment with another chemo cocktail because the injections of the drug I was getting during that treatment were causing a huge rash, fiery red and raised, covering most of my midsection. This time I wanted to keep the rash under control so I could carry on with this chemo cocktail.

This past Thursday, the oncology nurses looked at the rash I was getting from my injections (which seemed to be getting worse week by week) and decided to bring in a doctor to see if there was anything we could do to mitigate it. After some consultation, they decided to inject the bortozemib into my right arm instead of my belly. Along with that strategy, they recommended taking more Benadryl. Well, I can say that the strategy was a success as far as the action at the injection site is concerned. There is way less irritation, rash, and swelling at the injection site in my arm than in my tummy. Today, five days after the injection, the irritation is minimal. However, now I had to deal with the effects of increased doses of Benadryl.

I didn’t think I could sleep that many hours straight. Last Friday I was more or less fine during the day and into the evening. We even went out for an hour or so late in the afternoon. Later, at around eight o’clock in the evening, I took fifty milligrams of Benadryl to try to really hit the rash before it got going. Well, that worked. Even though the dexamethasone usually keeps me awake all night, this night was different and I slept all night. In the morning I took some more Benadryl and was less than alert after that. In fact, I was pretty much stoned the whole day. Remember, I’m taking hydromorphone, a synthetic opioid, for pain already. Stacking Benadryl on top of that left me incapable of much of anything, especially clear thinking. Reading and writing were beyond me. Saturday night I went to bed around eight o’clock, fell asleep as soon as my head hit the pillow and stayed that way until seven-thirty on Sunday morning except for a couple of pee breaks. Even then, I was still semi-stoned. Sunday was a day of backing off the Benadryl! We found that the swelling and the rash around my injection site on my arm were not too bad. We applied some ice and that helped calm down the swelling too. Today, the itch is pretty much gone. I’m pretty happy about that.

So, the moral of the story seems to be that I have to get stoned to mitigate the swelling and rash that are caused by the bortozemib. Oh well, if that’s the price I have to pay, so be it.

Lab Work

Today was one of my regular lab days. I have standing requisitions at the lab every two weeks for one set of tests, once a month for another set, and once every three months for a set ordered by my kidney specialist. The techs are getting to know me at the lab in Cumberland. Today I gave up five vials of blood and a container of urine. Later today I’ll be able to access the results of some of the tests online via MyHealth. I’ll do that and carry on here then.

Okay, so it’s five o’clock and I checked my lab results. The few results that are in point to numbers back within reference ranges or in very positive, normalizing trends. Works for me.

Thursday will be another interesting day. We’ll be going to Campbell River Hospital to get my right femur x-rayed and for a consultation with the orthopaedic surgeon. I’m kind of worried about the excavations in my femur. I’m hoping the chemo and the zoledronic acid have done something to stabilize my bone marrow over the past couple of months. We’ll know more next week.

23 When Death Comes Calling

~ Roger JG Albert ~ 11 Comments

Don’t worry. I haven’t gone completely morbid or so focussed on death I’m forgetting how to live. However, I’ve been fascinated my whole career on the overwhelming but often covert death denial we have built into so many of our institutions and which is at the core of much of our morality.

That’s one reason I was amused, yes, amused, when I came across this YouTube video of a long retired philosopher who in his 97th year of life, after a career writing about death and dying in an abstract sense often poo-pooing our personal fear of dying, come around and admit that he was scared. He was scared of dying. He’s dead now, but in this video we get a pretty good sense of what he was going through in the last few weeks of his life. It’s not about cancer. I figured I’d give you a bit of a break from that for one blog post.

So, Herbert Fingarette, author, teacher, husband of 70 years to the same woman (who died seven years earlier), devoted rationalist and philosopher (Stoic I expect), writes about death and dying in an almost flippant manner, virtually sniggering at the weakness of being fearful of death. Then, he’s ninety-seven years old and on his way out. He knows that, and now he’s scared. He still has time to be scared. His question is: “What is the meaning of all of this?” Well, that’s a legitimate question, one that Tolstoy asked himself about his life and work as he lay dying. Truth is, there is no meaning. No cosmic meaning that’s for sure.

I also wrote some (no books, mind you) about death and death denial from sociological, psychosocial, and anthropological points of view mainly through the work of Ernest Becker, the author of several books, the last one being entitled Escape from Evil. I do a detailed review of Escape from Evil in the early days of this blog. You can do a search for several posts on Becker by using the ‘search’ function on the right scrolling menu of this blog. Here’s an example:https://rogerjgalbert.com/2017/11/

One of my favourite BBC documentary presenters is Brian Cox who is an astrophysicist and has a beautifully produced series of documentaries on the cosmos, entropy, life and death. For him, everything, every structure comes into being using materials in the environment, grows, matures, then decays into its constituent parts and dies. Ocean floors are pushed up into mountains, sharp at first then eroded finally into plains and flatlands. Galaxies come and go. The whole universe is destined to die. For us, following Ernest Becker, death and disease are the twin evils of our world. Of course, we need death because we usually eat dead things. We need death to live. It’s when our own lives are at stake that things go messy in our heads. We don’t mind death at all and we’re quite willing to inflict it on anything we wish to shove down our gullets or we think might be a threat to our continued existence. The movies these days are full of death and destruction, but it’s always of the good kind, when threats to our existence are defeated. It’s a lot more complicated than I’m portraying it here. There’s a lot more explanation in the archives of this blog.

We don’t mind killing things, other animals, including humans. Some of us glory in the idea. As Becker points out, war is a venue for the creation of heroes. Some people trophy hunt to show how tough they are. So, it’s not death that bothers us so much, it’s death with insignificance.

I have no evidence of this, but it strikes me that most of us don’t think about death and dying on a regular basis, we have way too many other things to think about, like where the next rent payment is coming from or how can I confront my cheating husband or wife, or whether to get a latté or mocha on the way to work. Decisions, decisions. Way too many to be meditating on death. It’s true, the closer we get to dying the more immediate the threat, the more we sit up and take notice. Some of us deny the terminality of our own lives until our kidneys stop working in the last few hours of life. Some of us, if not most of us, push the thought of death and dying so deeply into our subconsciousness that it barely has time to surface even at the moment of death. “What, I’m dying? Nah, must be a mistake! Check my numbers again.”

Right now, I’m trying to conjure up my last moments on earth. It’s not coming easily. Sometimes I get scared, but mostly I’m curious about the process. I’ve been thinking of talking to a death doula to see how they approach coaching someone who’s dying. See, I can still intellectualize dying, but before I know it, I’ll be face to face with it and no denial will be possible anymore. Will I be like Herbert? I don’t think anyone of us knows for sure how it’s all going to do down. I certainly don’t, and it’s the uncertainty that is probably the most frightening thing of all.

20 Calm down!

~ Roger JG Albert ~ 2 Comments

The piece of music posted here below came to my attention when one of my FB buddies, Ed Brooks, posted a link to it. It’s available on YouTube along with a lot of other fabulous and calming music by Arvo Pärt and others.

Yesterday was an especially challenging day for me and I was right bent out of shape because I felt so helpless and weak, totally exhausted, not being able to help Carolyn with the snow shovelling and needing to go to the hospital. At the end of the day yesterday I listened to this piece of music and it almost brought me to tears. I listened to it again as I lay in bed getting ready to fall asleep and it was like a lullaby. I actually fell asleep listening to it. I woke up later and played it again.

Today, I’m better. We went to the lab this morning for more bloodwork and that was fine. It’s bloody cold in Cumberland this morning and we have another snow warning in the forecast. Whatever. We can use the truck to get around until the end of next week. We were supposed to take it in Tuesday to get some body work on it, but Carolyn called the autobody shop and changed the appointment until Friday. I hope that delay will allow us to get the car out of the yard or at least at the bottom of our fifty metre driveway.

We see my Victoria based oncologist, Adrian Yee, on Tuesday via teleconference from a ‘studio’ at the Comox Valley hospital. Remote examination! At least I get to talk to him and discuss my progress. Like I said, I’m feeling better. I’ll know I’m really better when I can get down to my shop or studio and finish a painting or carve some wood. Today I’ll do some drawing. That’s a start, at least.

Have a good day all of you and count your blessings!