Me, my Body and I: Part 1

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.

To live and to die.

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.

When Death Comes Calling

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.

Fuck cancer!

Fuck Cancer mugs

[WARNING: this post contains references to visualizations some might consider offensive, and I regress to being a potty-mouth. Be forewarned.]

I’m not feeling particularly creative, effusive or positive today. In fact, I’m feeling hard done by, angry and unhappy. Hence the title of this post. In fact, I’m feeling fucking crappy, as crappy as ever, or even more so, because for the last three weeks or so I’ve had a cold to compound the effects of my myeloma and the chemo meds I’m taking. Most of the time all I’ve been able to do is sleep, or stare out the windows.

We just came back from the hospital an hour or so ago. Carolyn had to shovel huge piles of snow blocking our driveway and covering our truck just to get us there. Carolyn is my warrior! At the hospital, I got an injection of bortezomib (a proteasome inhibitor) into my abdomen and an infusion of zoledronic acid (a bone strengthening drug that has not-so-fun consequences for my kidney). They gave me 4 grams of zoledronic acid rather than the 3.5 I got last time. I have no idea why. They have a complex formula for deciding how much to give me including my weight and my lab results. Now, I’m just waiting for the chemo meds to kick the shit out of me as they surely will. At least dexamethasone gives me a bit of a boost of energy allowing me to carve a few words onto this ‘page’ out of my weary brain. The sculpture I’m carving I don’t feel is particularly elegant or fine, but my tools are dull so it’s what you get.

Do you like the mugs? Carolyn had them made by a very talented potter in the Valley who had previously made a set of mugs we bought from her that resemble these a lot except for the swear words.

Yeah, fuck cancer! I’m so sick and tired of being sick and tired! And now, to compound my shit, I have to worry about peripheral neuropathy. [I have complained about this before, but read about it again for fun.] I’ve had peripheral neuropathy for some time, many years actually. Peripheral neuropathy (PN) is a condition where the peripheral body parts, arms and legs to be precise, get to feeling numb, painful, and full of weird sensations like having bugs crawling all over them (something I’m feeling a lot at the moment). One of the side effects of the cocktail of chemo meds I’m taking is peripheral neuropathy. Left untreated it can lead to immobility, loss of sensation and life in a wheelchair. This is one of the nasty side effects of my meds, one that has forced a friend of mine who also has myeloma off this particular cocktail that’s often referred to as CyBorD. I’ve written about this before. I have to keep a close watch to determine whether or not the symptoms of PN are getting worse or not. It’s just one more thing to keep my mind occupied with my illness. Fuck cancer!

Did I say Fuck Cancer? Right, I did. And I mean it. I’m not sure what else I would prefer to die from, but cancer is not the companion I would have wished for on my way to the crematorium. Maybe a six-ton weight falling from the sky onto my head would be preferable, I don’t know. I have no way to assess the quality of various means of dying nor the means of communicating the results of any research I might do on the subject to you after the fact.

I may have already written about this…remember that brain fog is a classic side effect of anemia and myeloma, repetitiousness and forgetfulness probably are too… I read somewhere that an artist was asked if he wanted to be cremated or buried after he died. Instead of answering as you or I might he replied: “Surprise me!” Yeah, that’s the way I feel about it. I won’t be around to give a shit one way or another, but I have said I want to be cremated. I have had too many nasty dreams about being buried to want that as an option. Now, though, I’m starting to have moments when I visualize the crematorium attendant pushing my body into the furnace and my skin starting to cook like a pig on a spit as the fire gets hotter and hotter. I know, it’s gross and morbid. Sorry for bringing it up.

So, to change the subject, I’ve had a few moments of lucidity lately between bouts of feeling really nasty because of this cold, and I’m reading (in bed) about my ancestors here in Canada. My family goes back a long way as immigrants to Canada, back to early in the 18th Century actually on both my maternal and paternal sides. I’m finding out that my Norman ancestors called LeGuerrier (the warrior in French) were very likely actual warriors. A thousand years ago the Normans were highly trained and fierce warriors. They not only conquered England in 1066, but (I’ve just read) also became rulers in Sicily after they were invited there to help deal with an enemy. According to a book I’m reading they were often called on as mercenaries. One of the Norman rulers in Sicily was called Roger. His son Roger II took over after Roger I died and he was not known for his tender generosity. Roger that! In any case, the first Leguerrier in Canada can be traced back to 1748. He came earlier than that, but that date is the first mention of him in ‘the books’. He died a fairly old man. Infant mortality was very common then but so was death at any age. From what I’ve been reading living to reproductive age almost seems to have been the exception rather than the rule. These days I’m thinking about my ancestors, their lives and their deaths, and my place in the lineage. My grandpa Leguerrier died at the age of 76 in 1975 from stomach cancer if I remember correctly. My father died in 2007 at 96 years of age. We all come and go. Some of us live longer that others of the same generation but in the case of my grandpa Leguerrier and my father who were only fourteen years apart in age, I think I prefer to follow my grandpa’s lead because my father died after years of very poor quality of life, unable to feed himself because his hands were so distorted by arthritis. He was deaf, had been for years, and he was either in bed or in a wheelchair. To make matters worse, my mother had severe dementia and didn’t even recognize him on his deathbed. She was heard to point to him and say: “Who is that old man in the bed there anyway?” My mother died two years ago at 94 years of age. I can’t imagine she knew she was dying at the time. I’m not sure she knew that she was alive. Hey, wait a minute…

Looking in the Mirror.

When I look in the mirror I see an old man. I don’t see an old man with cancer. I just see an old man with a white beard, not much hair, and wrinkly skin. Melanoma (skin cancer) often leaves visible, sometimes unsightly and disfiguring lesions. I don’t have melanoma, although my father did. No, I have myeloma (bone marrow cancer) and its damage is all done on the inside, invisibly. So, I guess I can keep expecting people who see me say: “Wow, you’re looking good!” I guess I DO look good! Now, the last thing I want is to discourage people from telling me how good I look, so keep it up! However, the invisibility of my condition is deceiving. I remember when I was a kid my friends and I used to work on our cars. That was still possible when I was a kid. Often we’d stand around looking into the engine compartment (often of my 1956 Pontiac four-door hardtop) wondering what could possibly be wrong as if just staring at the engine would give us some kind of clue. The engine was always sparkly clean and there was nothing obviously gone awry. If I had money by some quirk of circumstance I might take the car to a mechanic. If not, we might borrow my dad’s tools and start taking things apart. That usually ended up badly. Yes, the most undesirable conditions in life are often on the inside, impossible to see or diagnose by just looking at the person or car in question. I find it best to consult mechanics when our car shows signs of disfunction. I find it best to consult medical specialists for treatment related to my body. I guess I could try to treat myself using any number of the ‘cures’ available on Dr. Google, but I would like to live a while longer, thanks. Besides, I’m not that desperate.

Speaking of medical specialists, we saw my local oncologist today. I see him every five weeks. The result of our visit is that I will carry on with a second course of chemotherapy. We’ll evaluate how well it went in five weeks. My first course of treatment seems to have gone as well as could be expected. The little excavator in my bone marrow is slowly running out of gas and my red blood cell garden is growing again. I’m still exhausted and that won’t change for some time yet, but things are certainly going in the right direction for now. I think I just might be a model patient. So, where does this all leave me?

Well, I may be on my way towards remission. If and when I do go into remission, and that’s by no means guaranteed at this point, that would buy me some time. By that I mean that I may have a few years more to live, though inevitably, either the myeloma will kill me or some other condition will. I won’t be walking away from this situation, brush the dust from my sleeves and carry on. No, I’m on a one way street. So are you, of course, but I can see that damned barrier at the end of the street. I’m hoping that you’re still far enough away from it that you can live in blissful denial for a while longer. I don’t have that luxury. So now what do I do with my life?

That question came up in a recent Facebook thread, albeit expressed in a different way, but with the same effect, I believe. The question comes down to this: If you knew that you had a given amount of time left to live (six months, two years, whatever), what would you do with your time? Would you to be seized by an overwhelming sense of urgency? Would you be determined to cram as much activity and experience into your remaining time as possible? Or would you curl up in a fetal position in a corner of your bedroom quivering and whimpering while you await your inevitable demise? If you have the money and the energy you might want to get out there and travel the world. If you have a spouse, that might complicate things more or less because they may not want the same things you do and may not want to get caught up in your sense of urgency. The last thing you need when facing terminal cancer is marital discord. I think there’s a lot to be said for just carrying on with life as before.

If you have the energy and the money then good on ya. If you travelled a lot before your diagnosis then travel after. Your eventual energy deficits will tell you when to stop. If you were fairly sedentary, more into being at home and puttering around the yard, then that would be something you might want to continue doing. The stress of travel may not be that good for you. Looking around the Cancer Centre at the North Island Hospital this morning I didn’t see a lot of people with obvious enough vigour to engage in a lot of physical activity. In any case, back to my situation.

My exhaustion prevents me from doing much in the way of physical activity. If I do go for a walk I pay for it later. Travelling is impossible. At one point I thought it might be possible, say, to take a direct flight to Puerto Vallarta back and forth from Comox, but there are a number of contingencies that make that next to impossible that have more to do with arthritis and disk degeneration than cancer. Besides, I take chemo drugs once a week orally but also by injection at the hospital. For three or four days after I take my meds I feel crappy, really crappy so the chances of enjoying myself on a beach somewhere are slim to none.

So what do I want to do, and what do I actually do? Well, I want to work on our canoe, finish some paintings, do odd jobs around the property and visit family and friends in Vancouver and further afield. What I actually do is sit and lie down a lot. As I sit and lie down, I read, and sometimes I even write. At the moment I’m reading social history around the Middle Ages and doing a bit of research on my family roots in Normandy. That’s something I would have done anyway, but I do miss working in my shop and studio and going for long walks with Carolyn and our imaginary dog. My oncologist thinks I will regain my energy, at least as much as an old man can expect. If so, that would be great. I’d love to get back to canoeing, camping and puttering.

When I get closer to dying I will know it, and I expect I will have time to think about it, but there really isn’t much thinking that is productive about dying, at least not for me. I’ll know when it’s time for palliative care. I don’t want to live as long as the oncologists might want to keep me alive. I’ll make the decision when the time comes. I don’t think it will be a really hard decision. I know that beginnings are impossible without endings. My ending is a lot closer now than my beginning! That’s fine. Frankly, I’m much more concerned with my family than I am with myself. They are the ones left behind to mourn. But both of my parents are dead and we got on with life after their deaths. My family will do the same when I’m gone. That’s what we do as humans. Like it or not, accept it or not, rage against it or cower in a dark corner, the end result is the same. Don’t sweat it.

I meditate on my last breath.

Yesterday afternoon Carolyn tucked me into bed. The zoledronic acid infusion I got Thursday at the hospital has left me feeling like I have a nasty flu combined with a smashing hangover. I fell asleep almost immediately but when I woke up I could hear the rain beating on our metal roof. I love that sound. Today, the dexamethasone is kicking in and it’s leaving me in a state of nervous fibrillation. I’ve never done speed, but I expect the sensation must be something like that. Now is a good time to write because I have this bizarre energy that needs an outlet. However, the dex gives me the shakes making it difficult to keep my fingers singly on the keys of my computer.

So, getting back to yesterday afternoon. Like I said I slept for some time and woke to the sound of rain pounding the metal roof. I just lay there. I find that lying in bed staring at the ceiling is not a bad way to pass the time. I could never do that before. I had the work ethic really bad when I was still gainfully employed and long after truth be told. Now, my body has taken charge of my reluctant mind and has forced me to sit still, to lie down and not feel guilty about it. Cancer has its upsides I guess, but I’m not sure that I fully subscribe to its methods. One thing for sure: There is no normal in my life anymore: sleep times vary, meals are still on schedule as are the ritual pill taking, but I can’t count on feeling the same way during each new cycle of chemotherapy that I felt on the previous one. Dex is predictable but the intensity of its effect varies. I only have to take it one more time on this course of chemo lasting until January. I start taking it again in late January when I start my second course of chemo with my fifth cycle. A course of chemo lasts approximately four weeks, a cycle, one week. At least that’s the pattern now. But I digress.

I’m lying on my bed focussed on the cedar beam that crosses the ceiling in the middle of our bedroom, light pouring in from the three windows just behind me at the head of the bed. I close my eyes and think about death. Well, more about dying than death, actually. It’s the process of dying that is absorbing me, not death itself which for too long we’ve considered the opposite of life. Dying is another thing altogether. Dying is the separation of consciousness and body. Consciousness in my estimation comes to an end at the point of death but my body, this collection of matter brought together by processes millions of years old, will immediately begin to become unglued. It loses its integrity as a collection of cells and begins to decompose, that is, to lose its composition.

I don’t have to tell you this. It’s hard to live for any length of time without coming across at least one death in the family, among friends, or by reading the news or obituaries on the local papers. We know about death although we don’t quite know what to make of it or how it pertains to us. It’s strange that for most of us we take for granted that ‘we’ don’t exist before our conception and birth and that ‘we’ become ‘we’ by a combination of hereditary traits, learned behaviour, and environmental factors. ‘We’ or ‘I’ are constructs. We are not born fully operational. We become ‘I’ over time, slowly developing personality traits, habits, and idiosycracies that define us as unique individuals. But we resist very strenuously the idea that if we come we must also go. But I digress again!

So, I’m back in my bedroom, lying on my back on my bed in that state of half sleep, very relaxed and I meditate. I meditate on my last breath. I’m thinking that dying is not much different than living. When we fall asleep and lose consciousness we have no idea whether we will awaken or not, we just take if for granted that we will. I’ve had two brothers-in-law die this past year. One died during the night in bed next to my sister. We say he died in his sleep. True enough. He wasn’t conscious when he took his last breath. Neither was my mother who died nearly two years ago, but she had demential and was so hopped up on morphine that I can’t say she died in her sleep. My sisters were there at the moment of her death. I missed it by a few hours. I was in pretty bad shape myself two years ago with symptoms on myeloma that went undiagnosed at the time. I was perennially exhausted, in a great deal of pain, and I couldn’t stand the vigil as my family surrounded my mom’s death bed waiting for her to take her last breath. I prefer to think of my dying as just another falling asleep kind of experience. My last one of course, but still.

Needless to say, there are only one or two ways of being born that I know of, but millions of ways to die. I like to think that my last breath will be in the comfort of home or at least in a hospice, somewhere nice. Many, many millions of people worldwide don’t die under such benign circumstances. Violent death is common. Five thousand Canadians die in vehicle crashes a year, fifty thousand Americans meet the same fate. I don’t fancy that as a way of dying, but if it’s quick, maybe. I can’t imagine being hacked to death with a machete after watching my family meet the same fate in 1994 Rwanda, or being shot by a stray bullet in Aleppo leaving me wounded and watching the blood spill out of me. No, give me a peaceful, quiet place to die.

I’ve been diagnosed with an incurable cancer but I’m told that it’s more like a chronic treatable condition than a CANCER that kills fast and unannounced. I’ve got some time to think about my last breath. I’m not sure if that’s good or bad. Certainly, I’ll roll with it. I remember clearly when I was a kid of twenty or so. I had a fairly serious back injury while working at a sawmill on Lulu Island and I needed back surgery to remove a disk in the lumbar area of my back. I was a kid in search of meaning in my life, not such an unusual thing. I remember lying in my hospital bed after the surgery, hanging over the edge puking my guts out and thinking to myself. I can milk this for everything it’s worth. I could stay on Compensation for a long time then go on disability or something along those lines. Or I could get out of the hospital and use this time to get my shit together. And that’s what I did. I got my shit together. I enrolled in the liberal arts program at Douglas College in New Westminster and never looked back. My injury allowed me time to think about my future without the pressure of work. That was luxurious, and it worked.

Now, I don’t need to get my shit together. It’s been together for a few decades and I’m happy with my shit. My encounter with cancer, in a way similar to my experience with my back surgery, is giving me time to think about my last breath, but to also remember that every breath I take until my last one is worth paying attention to and celebrating. Whatever I do until I take my last breath is not so important. Of course, I can’t help but do something and I will do things that have always mattered to me. It’s impossible to do nothing and still be alive. Even lying on the couch ‘doing nothing’ is doing something. Whatever I do will be the right thing at the time because it will be what I do. In any case it won’t matter one iota after I’m dead because ‘I’ won’t be around to care or experience regret or any other sentiment.

Grinding It Out

My oncologist called this past Wednesday to discuss changing my chemo cocktail. The one I had been on for less than a week caused a very bad rash around my whole midsection along with a mild fever. So, I stopped taking that set of meds and am now waiting for word from the pharmacy here at the hospital telling me that my new meds have arrived. I’ve got appointments lined up for the first week of December, but I may be called to come in earlier. It’s all par for the course. Hurry up and wait.

Thing is, this new set of meds has caused some pretty significant side effects for a couple of people I know with myeloma. We’ll have to keep a close watch on symptoms, especially those related to peripheral neuropathy. Can’t say I’m looking forward to the new meds but then again, I’m not too sure what the alternatives would be. I’ve sometimes thought about what would happen if I turned down any and all chemo. I know that there are drugs that are more palliative than chemo and I seriously wonder how many more years of good quality life I could get out of benign neglect rather than with aggressive intervention. These are just things I think about late at night when I’m falling asleep along with visualizing my death bed.

I’ve been reading Barbara Ehrenreich’s book Natural Causes. She’s a couple of years older than me and had a malignant tumour removed from a breast some time ago. She’s fit, she’s healthy but she also writes that: “I gradually came to realize that I was old enough to die.” She means that she’s had a good life, a fulfilling life, which is much more than is afforded many of us. She notes that the military considers eighteen year olds old enough to die and that there is no ‘best before date’ stamped on our asses. Some political leaders lead well into their eighties and nineties. That said, there is a time, when we reach seventy or so years of age when our obituary is likely to read “died of natural causes” than anything else. At a certain age, she argues, there is no need for an explanation for dying. It’s okay to die. Of course we should expect to die. Dying is as natural as being born although we generally consider it a travesty and a high order insult to life. I visualize myself dying, but I’m not convinced that the visualization can ever be very accurate. The closest I can come to visualizing the end of my life is when I’ve had a general anesthetic. Under a general anesthetic, the first drug they administer puts one under, makes one unconscious. If that’s the way I’m going to go, I can live with that. I watched as they put our last dog Wilco down a year ago August. First the sedative, then the lethal dose of whatever it is that kills. That kind of end would be fine with me. If I have to do it, and I don’t see any way out, this is what works for me.

Pain is an entirely other matter. I’ve had too much of that in my life and I don’t want to die under a heavy blanket of pain. Some pain would be alright, but nothing overwhelming. No pain would be the best, but that’s asking a lot of this aging, crumbling body to deliver. So, I’m willing to compromise and accept some pain when my dying time comes. I watched my mother as she lay dying in her nursing home bed almost two years ago now. She had Alzheimer’s and was unable to communicate at all verbally. She did communicate her pain, however. She was under high doses of morphine but we could tell when the morphine would wear off because she would get more and more agitated. I have no idea what she was experiencing, but I have the strong sense that it wasn’t at all pleasant. I was not there in her room when she actually took her last breath but as my sister recalls it, it was all fairly anti-climactic. Chances are very good that I won’t follow my mother’s example in death. For one thing, with myeloma I’m not likely to live long enough, and for another thing, I’ll probably still be sentient and able to make some decisions myself about my own death, unlike what happened to my mother. My mother was a very fine mother, cheeky as all get out sometimes and able to maintain a sense of humour before some pretty daunting odds at times. Dementia robbed her of end of life quality of life. That’s a shame. One of my sisters died a few years ago. She was four years older then me and had lung cancer. She was sentient for most of the time or her dying, but I wasn’t there when she finally gave up her last breath. I was a ferry ride away and unable to make it. She died a half hour before I got to the hospice centre where she ‘lived’. I know one thing for sure. She was pumped full of morphine for some time before she died and that effectively shut down her ability to decide anything.

Lately I’ve been experimenting a little with my pain meds. I’m on a large dose of hydromorphone (not related to morphine- a lot stronger, actually) taking two 1mg pills every four hours. I tried to back off some and take a lower dose every four hours for a day. I felt I could probably manage that because my pain was pretty much under control. Mistake! My pain is under control because I’m taking shitloads of hydromorphone. When I tried to back off, pain started to come back in my neck, ribs, right pelvic area, legs and shoulders. I knew that if I didn’t resume my twelve mg pill load a day that I would soon be completely incapacitated and bedridden. The decision was a no-brainer, but I was hoping for a better outcome.

One of the issues, of course, is that I haven’t really started treatments yet for multiple myeloma. I’ve been diagnosed and all that, but I haven’t had any chemotherapy to mitigate the effects of the disease, so it may be that in a few weeks or months and I go into remission that I’ll be able to back off my pain meds successfully. Wow, that would be cool. For now, I’ll continue ingesting lots of hydromorphone and maybe indulge in a beer or two, maybe even a tiny bit of scotch. It’s okay, all my specialists say a couple of beer are ok. I didn’t ask them about the scotch.

One (or more) of my readers here have suggested that I don’t swear anywhere near enough in my narrative. Well, fuck that! I’ll swear if I want to, swear if I want to, swear if I want to. You’d swear too, if it happened to you! (Figure out the song this is based on). Fuck!

Life and Death: How Absurd!

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. 

A parting thought: Try not to think of life and death as experienced by individuals. What if the life and death individuals experience is no more than the experience of a mushroom growing out of the underground mycelium. The mycelium is the important, continuing force. We, as individuals, are just fleeting and temporary expressions of the mycelium (in our case, the DNA) that is the source of our lives and deaths. We are just expressions of a process whether we like it or not, whether we think about it or not, and whether we fear it or not. The mycelium itself is not immune from death although it can live on year after year, decade after decade, through the lives of countless mushrooms. Eventually it too will die. As Brian Cox, the famous British physicist put it, the universe itself lives and dies in a moment. Individual organisms come and go in an instant. The passage of time is an illusion that allows us to cope with the need to die. One human life lived over a period of eighty years is no more fleeting than the life of the universe itself.