I taught university level courses in sociology and criminal justice for over 30 years but now I'm retired and at 72 was diagnosed with multiple myeloma, bone marrow cancer. This site is now a chronicle of my journey with myeloma.
This is a re-blogged post: I first published this post in January of 2018. It has become one of the most popular posts of the hundreds I’ve posted since I started in 2012-13, viewed almost 500 times in 2020 alone. Somehow I find it’s relevant to my last post. Just after my mother died on January 13th, 2018 I posted a comment and a few days later I posted this one. Originally it was just called It turns out we die from the feet up. If you read this post in 2018 you might want to skip reading it now. I think it’s worth reading again.
[Disclaimer: Don’t read this post if you are sensitive around the topic of death and dying up close.]
It turns out we die from the feet up. Well, that’s not strictly true in every circumstance, some people die from a bullet to the head, but it has an element of truth to it. As I noted in a previous post, my amazing mom died last week, on the 13th, very near midnight. She would have been 94 on April 4th. I wrote before that she died a good death, but that’s not what this blog post is about.
For three days or so before mom died, we held a vigil by her side. I have many siblings but two of my sisters were especially attentive towards our mom and visited her virtually every day at her care facility in Coquitlam. They were especially present during this vigil, but most of my other siblings showed up at one time or another as did some of their children and even grandchildren. We spent many hours in mom’s room and out in the hallway. Some of my sisters (and a brother-in-law or two) spent nights by my mother’s side too.
My mother was 93 when she died. Her story is really astounding and is one of sacrifice, caring, selflessness and dedication. She married my father on January 28th, 1946. He had 5 daughters from his first marriage. His wife died in childbirth as she was giving birth to her first son. Because my father had to work to support the family I assume he put out the call for help and my mother, 21 at the time, answered that call. She moved into dad’s house to look after the 5 children and to do all the housework too. Long story short, my mom soon after married my father and they proceeded to have 10 more children, I being the oldest. I’m 71. I was born in 1947, a year after my parents were married. My eldest sister from dad’s first marriage is about to turn 83.
Well, it turns out that although we are a loving and caring family we are also prone to irreverence. We love to laugh and tease each other but we also care about and respect each other, despite our differences. As my mother lay dying, we got to wondering just how the staff knew that she was in fact near death. We asked questions and the nurses and care aides responded in very matter of fact ways. How can we tell when someone is near death? I had heard that when the kidneys shut down that’s a sure sign that the end is near but in this case, mom had not had food or liquids for 2 or 3 days. It would be difficult to tell if and when her kidneys shut down. All this time, mom’s pulse appeared to be quite strong and although her breathing was irregular, it seemed to be consistent.
One of the nurses then told us that it’s possible to roughly assess how long it will be before someone takes their final breath by looking at their legs. When the toes and feet get cold and a line of blotchy skin appears, that means that it won’t be long. Now, nurses and care aides have a lot of experience with having people die on their watch. It would be foolish to ignore what they have to say.
After that, we proceeded to periodically lift the blankets off of mom’s feet to see how her toes and feet were doing. We didn’t notice any special coldness at first. Even on the day of the 13th, it didn’t look as if her feet had changed much in colour or temperature. We often checked on mom’s feet to see if they were getting colder or if the line of blotchy skin was going up her leg. The nurse said that when the line gets to the knee, that’s it. Death slowly creeps up our legs. Of course, there was no question of mom coming out of this crisis alive, so it was just a waiting game now.
I left the care facility around 4:30 PM on the 13th so I could have dinner with my daughter and her family in Vancouver. We half expected mom to still be alive in the morning when we returned to the care facility. I was getting exhausted too and needed a good night’s sleep. As it turned out, that day was the last one I would see my mother alive. In the early morning minutes of the 14th I got calls from one of my sisters and a brother-in-law telling me that mom had passed away, but my phone was on vibrate and I missed their calls. At breakfast, I learned that my mother had passed away a few hours earlier. Within two hours of her death, the people from the funeral home came around and took her body away. Shortly after that, some of my family members cleaned out her room of all of her personal belongings leaving no trace of her ever having been there.
I called my sister and we talked about what happened as mom got closer and closer to taking her last breath. It so happens that the nurse was correct. Mom’s legs had indeed gotten cold and blotchy as her heart became too weak to pump blood to her extremities. By the time she died, her legs were cold up to her knees and her legs were blotchy.
So, along with the grief and sadness that we all felt as we watched our mother/grandmother/great grandmother/mother-in-law die, we learned about how the process evolves.
Right up to her last moments our wonderful caring mother had something to teach us.
This is not one of my regular myeloma posts. I told part of the story I’ve written below in a February 2015 post. Ever since then I’ve wanted to expand on it so as to tease out some truths about the events surrounding the death of my father’s first wife and his subsequent marriage to my mother. History and biography are mostly fabrication, the invention of the past on the basis of one-sided, biased information, conjecture and, of course, ideology around actual facts like the time and date of certain deaths and other events. That doesn’t mean they’re not interesting and related somehow to the truth. Anyway, without prejudice, I offer the following:
Part 1: My father
Life is complicated. Relationships are complicated. People are complicated. Take my father, for instance. He was intelligent, generous, level headed and kind hearted, but at times he had fits of anger that were shocking because they seemed so out of character for him. He teased us children mercilessly, sometimes to distress. He could be, and was, physically violent on rare occasions. We never spoke of such things so I have no way of knowing what were the deep-seated impulses that led to his rare bouts of uncontrollable anger. He was never violent towards my mother that I know of, but he beat my older sisters one time that I recall very vividly.
From what I remember, my sisters were whining and complaining about doing the dishes or some such thing, probably yelling and screaming, fighting amongst themselves when my father, for some reason had had enough of it. He let fly with a pot that was handy, hitting them with it repeatedly until they all cowered on the floor, weeping and in shock. I might have been six or seven years old at the time and I remember cowering myself in the hallway, by the bathroom door wondering what could possibly be going on. To this day as I think about it, I can still feel the dread and fear that overwhelmed me at the time. I don’t recall anyone discussing it much after the fact, but it was traumatic and definitely left an impression. That I do recall.
He hit me too on the odd occasion for various reasons. I was no angel as a child and I may not always have conducted myself with the propriety and reasonableness that should, of course, inform the actions of all well-behaved five-year-old boys. I remember one time when at about six years of age, maybe seven, I smacked a kid (accidentally, of course) over the head with a garden hoe drawing a substantial amount of blood. No serious damage done, but you know how head wounds can bleed. I got ‘the strap’ for that one. When my father got home from work that day and my mother had conferred with him telling him all the sordid details of my great misdeed, his duty (I presume he saw it as that) would be to clinically administer several blows to my open hand with a rubber and leather strap he had gotten from his workplace and which he kept on a kitchen shelf for just such occasions. He did not draw blood, but in his mind I needed to be punished. I had to learn that there were consequences for what I had done. The logical course of action was for him to hit me, a perfectly acceptable and even expected thing to do at the time although I wasn’t enthralled with the idea.
My father was driven by a sense of duty to his church, his family, and French-Canadian tradition. He did not question his duty to have as many children as God expected of him and he took great joy in each of us. He was ill educated in the formal sense. He never learned to read nor write although he could do rudimentary arithmetic. He might have made it only to grade four in school but it was not because he was incapable of schoolwork; it was because he was needed to work on the farm in Alberta where he grew up and he needed to take care of one of his brothers. I don’t recall he ever mentioning it, but my older sisters told the story of why he had to look after one of his many brothers a little differently than was told to us much later at a family gathering in 1989 by one of our many uncles, I can’t recall which one. As my father had told the story to my sisters, he hurt his back so badly as a child that he could barely walk making it impossible for him to trek the three miles back and forth to school in Fort Kent every week day. Eventually we were to learn a different version of the events surrounding my father’s story. As my uncle told the story my father and his brothers were roughhousing one day in the farmyard and my father jumped on one of his brother’s back so hard that it virtually crippled him. My father’s punishment for that offence would be that henceforth he was to carry his brother around with him on his back wherever he went. He packed my uncle around for years. My uncle eventually fully recovered from his back injury and was able to walk on his own. Whatever the truth, my father did not attend school much as a child. He was no less intelligent because of it but his inability to read hampered his career during his working life. Ultimately, although we never discussed it, I forgave him his desire to save face by concocting a version of events that allowed him a more morally acceptable role in the accident that led to his functional illiteracy. Sometimes lies it seems are easier to live with than the potential opprobrium that might ensue with people knowing the truth.
My father seldom drank alcohol and never smoked but he did gamble every once in a while. He was what most people would have called “a good man” in the day. He worked hard and rose to junior management positions in lumber mills around the Lower Mainland in spite of his illiteracy. He was active in parish life and in the Knight’s of Columbus. He also fathered fifteen children.
Part 2 Childbirth and death
I don’t know if what I am about to write is entirely true or not, but it may very well be given the time. It was 1945, June 22nd. The war would be over soon. Normally this day would be a time for celebration, but this day would not be one of those. This day my father’s wife, Yvonne, would die in childbirth. She was an otherwise healthy twenty nine year old woman who had already given him five daughters. This day, something would go horribly wrong in the delivery room and Yvonne would bleed to death. Her newborn son would also die in the delivery room. I heard it said that Yvonne died because my father couldn’t afford a blood transfusion that would have saved her life but I was later to find out that this was a fabrication. One of my older sisters told me in a telephone conversation after my father had died that friends and family, even nurses at St. Mary’s hospital, donated blood but to no avail. I don’t know that to be true, but I expect it’s closer to the truth than the first account I heard of about no money for blood.
Just imagining what my father had to go through with his wife dying in childbirth and five young daughters to look after at home I expect that he was wrought with sorrow, anger, panic and despair no matter how his wife had died. First he had to break the news to his daughters that their mother would not be coming home. Then he had to find a way to look after his daughters while still going to work. He may have believed that the whole thing was God’s will. I really don’t know. I’m certain my father thought about that wretched day in 1945 every subsequent day of his life.
Part 3. An old photograph
I have an old photograph. I don’t know who took it and I’m not sure exactly when it was taken, but it must have been sometime in 1943 because in the picture my father is holding in his arms my half sister, Denise, who was born on January 10th, 1943. She is the only one of my siblings who is no longer alive. She died in 2004. In the photograph she appears to be a year old or so, which would mean the photo would have been taken sometime in mid 1943. In any case, looking at the photo, it doesn’t look like Yvonne was pregnant at the time with Roger (the name they intended to call their new baby if it had been a boy), but she may have been.
There is no obvious way to tell where the photo was taken, but the ground is dry and there’s no snow. I’m guessing it was taken somewhere in or close to New Westminster, British Columbia. Actually everyone in the photo is dressed for a nice, warm spring day, and they’re all standing in front of my father’s 1929 Ford Model T.
In the photo, my father’s first wife, Yvonne, is farthest on the left. She is standing just behind my half sister, Lucille, who at that time was two years old. She has her hands resting on Lucille’s shoulders. Next to her on her right is my father and he, as I said, is holding Denise. Standing next to him is my mother, Lucienne Leguerrier at the time. Next to her is Rémi Leguerrier who married my father’s older sister, Isabelle, and farthest on the right is my aunt, Cécile, mother’s older sister. Uncle Rémi, standing between them, has his arms around the shoulders of my mother and my aunt. He’s smiling too. The children are not smiling, neither is Yvonne although she may have been suffering from morning sickness and that might explain why.
Who could know that when this picture was taken my father’s first wife would be dead within the year and my mother, Lucienne Leguerrier would soon be his new wife. So, here we have my father flanked by his two wives. Never would he have guessed at that moment, smiling for the camera, holding his youngest daughter, that Yvonne would soon be gone and that he would be scrambling to find a way to look after his five daughters while still going to work. The picture tells nothing of the sorrow to come.
My father and Yvonne moved to British Columbia in 1936. As it turns out they made friends with the nuns who ran St. Mary’s hospital in New Westminster where all their children would be born. Apparently my mother had worked there for a time as did my father and it was the nun/nurses at the hospital who suggested, after Yvonne died, that my father ask my mother-to-be to come help look after the children while he went to work in a local sawmill. That wasn’t a stretch because the Albert family knew the Leguerrier clan when everyone was still living in the vicinity of Bonnyville, Alberta a few years before. So, my father knew my mother’s family before a number of them migrated to British Columbia during the Depression looking for work. My father was resourceful and capable of doing various kinds of lumber mill related work so he was able to find employment. My mother was equally resourceful and unafraid of hard work.
When Yvonne died, my father asked my mother-to-be if she would help and she agreed that she would. Months later, actually it wasn’t too many months later, my father had my grandfather and grandmother come to New Westminster to look after the children because my mother, who had been a surrogate mother to my father’s five daughters, had returned to Alberta unexpectedly it seemed. It turns out that she had returned to Alberta anticipating that my father would join her shortly so they could be married in Alberta at Fort Kent and both return to New Westminster as husband and wife.
Now my older sisters, really my half sisters, had a new mom. My mother was only twelve years older than my oldest half sister, Hélène. That caused minor friction to start with because when Yvonne died my father had told Hélène that she would now have to be mommy to the four younger ones. Now, she was being displaced as mother of the family but that animosity soon dissipated because my mother had lived with them for a few months already giving time for attachments to grow between them.
I cannot imagine that my father was not steeped in pain and sorrow during that whole time, but he had no other choice but to carry on. Sorrow must give way to children and their needs.
After their wedding in Alberta on January 29th, 1946, my parents wasted no time in getting on with the business of making babies. They were to have ten in all, but I was the first. I was born on January 4th, 1947, not even a year after my parents married. If my father’s first wife, Yvonne, had survived, I would not exist. Life’s like that. What I did get was my brother’s name. My half brother, had he survived, would have been known as Roger. That’s the name on the tombstone in the cemetery in New Westminster that marks the grave of he and his mother, Yvonne. So, I carry the name of my dead brother. It seems strange to say, but had he lived, my father’s life would probably not have been that different than how it actually turned out.
So, I’m sitting on the deck overlooking the fountain that Tilly has fallen in love with, and I can see the bees working the St-John’s Wort, flower after flower. I tried to capture of video of bees and flowers, but so far it just hasn’t worked. In any case, I swear I’m telling the truth (bees swarm those flowers!) so don’t press me for visual proof although I have posted a picture of the St-John’s Wort above the fountain. Spot the bee!
Hummingbirds are into the honeysuckle to the right of this picture, making regular trips here from the feeder in the front of the house. We have huge huckleberry bushes close by which we usually save for the robins and for my brother Léo when he often comes to visit with his family in the summer. But this year who knows where the robins are and Léo is safely distancing in Maple Ridge. Someone will probably write a book: Romance in the Time of Covid or maybe, Covid-19: Mess up our world will you?
The weather is getting warmer and the reclining chairs we have on the deck are very comfy. Sleep comes easily unless I’m on one of my dex days. Two and a half more chemo cycles. Must make it through. I’m trusting that I won’t be in a wheelchair after my first chemo course is over in October, but who knows, oncologists are not known for committing themselves to a particular prognostication. Oh well. Such is life.
Winding down. Sometimes I lay awake at night, especially on those nights when I’m on a dexamethasone high. Wakeful periods at night are a new things for me. I never had trouble sleeping, not even during really stressful periods in our lives. Now, at least three nights a week I have a hard time falling asleep or staying asleep.
At these times, all kinds of thoughts come into my head. They’re not all bad thoughts. I sometimes go over plans I have for a project I’m working on or I’ll muse on the news of the day. Sometimes wakeful periods can be quite productive. I promised myself years ago that when I got old I wouldn’t be one of those people who lived in the past reliving regretful events or sad moments in my life. Oh, that happens on occasion, but then I catch myself doing it and move on. Inevitably, these days, my mind wanders into the wall of truth that is my seventy-three years of life. Seventy-three years can seem like a long time, but it’s just a flash, really.
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.
Cox could have said “One human life lived over a period of eighty years is just as fleeting as the life of the universe itself,” because it is SO fleeting. Lately I’ve been musing about the lives of my parents and of their parents. My parents lived fairly long lives by most standards, both into their nineties, but they’re both gone and now their lives are a complete thing. It’s possible to trace their lives from beginning to end, to focus on the things they did, the children they had, the jobs they had and the way they related to us kids and their friends and relatives. There are photos and some film that my father took with his Super 8 movie camera. Everything they were and did is packaged up and we call that their lives. The finitude of a past life is obvious. It has a beginning and an end.
In our own lives we look back on past events, camping trips, weddings, stressful situations at work, strained relationships, special bonds we create with like minded people and with community. We look forward to and anticipate events, meetings, occasions, going to bed or working on a project. Time never stops for us until we fill that space we call life. At the time of our death, our life space is complete. A life is not complete until death, no matter when death comes.
Yet we are like mushrooms.
We are products of a cultural, social, and physical mycelium that has existence over time. We are much like mushrooms that sprout from a mycelium that has existed underground for some time and will exist long after the mushrooms that it produced slowly melt away back into the soil. Like mushrooms, humans flower for a short time, then decay returning to the soil of our ancestors. We are expressions of a process. Yet, no matter how elegant and truthful this metaphorical explanation may be for our lives, it does not satisfy.
No matter how hard I try to intellectualize the problem of time, life and death, I can’t help but get choked up a bit when I think that I’m on my last legs, that my death is immanent. It’s still a bit of a shock to me to think that I have incurable cancer. No way of getting out of this one. One day soon(ish) I will die. Am I prepared for that day? Not really. I want to think that when the time comes I will courageously and stoically meet my fate, but I may just beg for more morphine. Who know? However I spend my last moments of consciousness, nothing will change the outcome.
Yes, there’s currently a lot of research being done on a cure for multiple myeloma but like AIDS, it’s cure is elusive. There are treatments for myeloma that make it more like a chronic disease than an immediately fatal one, but still, the writing is on the wall, as the saying goes. Besides, myeloma or not, my death is inevitable, as is yours because that is the way it is. Life and death dance together. Learning the final dance may be the toughest thing I ever do.
A minute ago I mindlessly killed a mosquito. It’s an automatic reaction. A Jain would be very displeased with me. Janism is an ancient Indian religion. “Jains believe that animals, plants, humans (irrespective of different spiritual development) all have a living soul in them and all should be treated with equal respect and love.” (From the website)
Shit. Well, I guess I’m no Jain.
How mindlessly we treat most life, and how quickly life comes and goes.
My dad was an unhappy man. He used to complain about the slightest thing being out of place – a pen, the honeypot, his special knife with the fattened grip. By the time his health really started failing, his arthritis so bad he could no longer get out of bed, his condition became all he complained about. ‘Dorian,’ he said, one morning over breakfast, the grapefruit cut up indeed with his special knife, ‘I hate myself.’ He was 86 years old and, I felt, nearing the end of life, so I took it upon myself to help him die as well as he could, a kind of Ars moriendi for the old man. ‘But Dad,’ I said, for the first time in our 32-year relationship. ‘I love you.’ When that didn’t help, I sent him some Montaigne.
Michel Eyquem de Montaigne (1533-92) lived a good, long life for a man in early modern France. By all accounts, it was a happy one, at least if his Essais (1570-92) – rangy discourses on varied subjects from thumbs to cannibals to the nature of ‘experience’ itself – are anything to go by. His writings, autobiographical in nature but highly argumentative, have survived him as somewhat radical (for the time) self-experiments. ‘Thus, reader, I am myself the matter of my book,’ he opens, with a letter of warning about the 1,000-plus pages that follow: ‘you would be unreasonable to spend your leisure on so frivolous and vain a subject.’ Since I took my dad to be also involved in so vain and frivolous a subject – namely, himself (right down to the urinary tract diagrams he drew for me on paper napkins at the dinner table) – I figured they’d have a lot in common.
The passage I chose to hand him, from the essay ‘Of Solitude’, concerned Montaigne’s secret to happiness. It says, simply: these are the things we normally think will bring happiness; they’re wrong, here’s mine. ‘We should have wife, children, goods, and above all health, if we can,’ he writes; ‘but we must not bind ourselves to them so strongly that our happiness depends on them.’ In what’s become something of a trademark for his life philosophy he adds: ‘We must reserve a back shop all our own.’ A back shop – or in the original French, arriere-boutique. Of course, this is metaphor. Of course, my dad took it literally.
What is there left for us to learn from Montaigne on the subject of happiness? For one, that ‘back shop’ doesn’t mean the room behind your place of work. Increasingly confined to his bed, in the crummy 17th-floor apartment that doubled as his home office, my dad read these lines with an eyebrow raised. Granted, Montaigne himself penned them from a castle-tower eyrie, overlooking the vast estate of his château. He didn’t mean for us to take refuge there – this privileged perch was just where he did his writing (as I do mine now in the storage unit behind my house, a heavy wooden partition setting me off from the boxes and mess). No, the physical ‘back shop’ is just a writer’s den, and this misunderstanding has caused critics to huff about Montaigne’s solipsism, as if what he really said was: Go be alone and make great art. This does not lead to happiness, I assure you.
When my dad emailed back, misreading Montaigne in just this way, he nonetheless conceded that the passage I’d sent him was ‘thoughtful’. But not, he added ‘surprising’, as ‘Many writers nowadays speak of personal space, meditation, being alone at times, and so on.’ He went on to say how there was a difference between voluntary and involuntary solitude. ‘Many of us, as we age, become too much involved in that space.’ It’s not just the confinement but the loss of all able-bodied experience that they’re missing out on, and my dad (as ever) listed them: going to the market, dancing, seeing family and friends – precisely the things that Montaigne cautioned his readers not to count on for happiness.
In her bookHow to Live: Or a Life of Montaigne in One Question and Twenty Attempts at an Answer (2010), Sarah Bakewell acknowledges the temptation to read Montaigne as an advocate for a type of isolation (chosen or not), but she qualifies this, saying: ‘He is not writing about a selfish, introverted withdrawal from family life, so much as about the need to protect yourself from the pain that would come if you lost that family.’ It was after the death of his closest friend and confidante, Étienne de La Boétie, and then later of his father, that Montaigne retired to his private library. In Donald Frame’s translation, this period is marked by Montaigne’s fall ‘into a melancholic depression, to combat which he begins to write the first of his Essays’. The contemporary US writer and essayist Phillip Lopate ventures that, for Montaigne, ‘the reader took the place of La Boétie’. But how, exactly, did Montaigne’s attempts (the literal translation of essai) assuage grief?
Certainly, an unnamed interlocutor haunts the text, the kind we usually chalk up to self-talk. Talking to people who won’t talk back (or who can’t because they’re no longer with us) is a form of conversational intimacy we might read as an extension of Montaigne’s general affability. In life, Montaigne was known about town as a raconteur with an open-door policy for guests. Even Bakewell, who sums up his back shop as a form of ‘Stoic detachment’, notes that in another lasting dictum Montaigne cried: ‘Be convivial: live with others.’ If Montaigne’s back shop is meant to mend a broken heart, then it is not by avoiding future pain, but by coming into a different relation with it.
Montaigne was well aware that the promise of getting away from it all was a fool’s errand since, wherever you go, you take yourself with you: ‘It is not enough to have gotten away from the crowd,’ he writes, since ‘we must get away from the gregarious instincts that are inside us.’ Instead, to quote Albius Tibullus, one of the Latin poets he grew up with, ‘be to thyself a throng’. This is where I hoped my dad might take note: shut in with no one but himself for company, there might still be a chance for great companionship. ‘We have a soul that can be turned upon itself,’ writes Montaigne, ‘it has the means to attack and the means to defend, the means to receive and the means to give.’ Sadly, my dad didn’t see his own soul this way and, after falling into a depression of his own, he took his own life.
I wonder now if Montaigne’s back shop was less the writer’s saving grace, lifting him from the depths of despair, but not the act of writing from within it? ‘Here our ordinary conversation must be between us and ourselves,’ he writes – and I take it he means that the quality of the inner dialogue will determine the quality of the life.
Montaigne’s mental chatter had a buoyancy to it, as he bounced from one subject to the next, going with the current. What I couldn’t convey to my dad, evidently, was this lightness of attention, distilled in that most famous of Montaignisms: ‘Que sais-je?’ (What do I know?) In his celebratory portrait of Montaigne, Ralph Waldo Emerson in 1837 comments that: ‘His writing has no enthusiasms, no aspiration; contented, self-respecting, and keeping the middle of the road.’ Not taking life quite so seriously – the pursuit of happiness notwithstanding – might then be Montaigne’s key to dying well. After all, there might be no surer inner peace in one’s final days than not needing it so badly.
This article was originally published at Aeon and has been republished under Creative Commons.
I probably should have included Saturday in my original post from yesterday, because it’s also a down day due to my chemotherapy treatments. I had another dex night last night. I got my usual acid reflux but it came much later than usual, around midnight, and lasted until around 5 AM. My tinnitus is about as bad as it gets right now. I slept, I really did, for a couple of hours between 10:30 and 12:30, then I got up to pee. I sort of slept again until 2 PM but that was it. I woke up startled by a very odd dream. So I listened to some music and read some Fernand Braudel about Medieval Europe while I tried to process this weird dream I had just had.
I woke up at 2 AM in a sweat. That’s not unusual either in the first three days after taking my meds, but this time, like I just said, I woke up from a very strange dream. I wouldn’t say it was a nightmare; it was much more matter of fact than that and it was very vivid.
So, in my dream I invented a portable guillotine. It was portable with a blade a metre long and 30 centimetres thick and sprung like a chop saw. It looked more like the cutting end of a pair of garden sheers than a traditional guillotine but it worked like a guillotine. I invented it to cut up yard waste like sword fern fronds and twigs, that sort of thing. I think it’s because yesterday Carolyn worked in the yard doing clean up and she cut up a lot of sword ferns to the ground. I guess I invented this ‘machine’ to chop up these fronds to make them more compostable rather than take them to the dump in the trailer. In any case, it worked well, but then someone stole it from in front of my workshop one night. I was pissed off but resigned to just building another one. Then the neighbours started reporting that dogs and cats in the area were turning up decapitated. I figured whoever had stolen my guillotine could easily be doing this. I was mortified. Then I wondered if we’d start finding people decapitated, maybe up the logging road. Now I felt really shitty. All of that mayhem was my fault for inventing such a dangerous tool. Then I woke up.
I’ve been wracking my brain to try to wring some significance out of this dream but I can’t seem to figure it out. I invented a dangerous tool for a good cause but then found it used for very destructive purposes by person or persons unknown. What can I make of that?
In any case, today will be strange. I’ll probably have to sleep much of the afternoon after I completely come down from my dex high and am left to deal with the fallout from the cyclophosphamide and bortezomib. For my headache I’ll take a couple of Tylenol. Strange, but my peripheral neuropathy is attenuated at the moment. I wonder how long that will last. The burping is driving me nuts!
By the way, I came up with my epitaph. It goes like this:
Here lies a man who did a lot of bad things in his life.
Here lies a man who did a lot of good things in his life.
At the end he hoped it all balanced out and he would
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.
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!
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.
Yesterday was okay. The day before was fine, but it’s hard to predict from day to day what my day will be like when I wake up in the morning. When I woke up this morning I knew that I wouldn’t be having a good day and contemplated just staying in bed. I try to maintain a modicum of a schedule so I like to get up around the same time every day although over the past couple of weeks my rising time has shifted a bit to the 8 AM side and is less inclined to stick to my former rigid 7:30 AM time.
I know my day won’t be a good one if I wake up from an unsound sleep with my body in full tingle mode, especially if it’s accompanied by the sensation of spiders crawling all over my legs. My reaction to my first cursory assessment of the state of my body is to hunker down, pull the covers over my head, and forget about it. But I don’t do that, do I. No, I get up, stagger into the bathroom clutching my cane in the hope that it will help me maintain my balance, and get myself into the living room where I usually plunk myself down into my recliner. I know I will spend the day in utter exhaustion reluctant to even get up to pee.
This pattern of not knowing until I wake up what my day will be like has been going on for years. That’s nothing new. I have no idea what differences in my daily routines will be wrought by the new chemical soup I will be ingesting in various ways as the oncologists stir up a new chemotherapy routine for me next week. The chemotherapy is bound to throw things out of whack in lots of ways some I can prepare for, some I can’t do anything about. Over the years, I’ve almost gotten used to being restricted in my mobility, but in fairly predictable ways. If I wanted to do something, like attend a meeting or go to a concert, I would know that if I did that I’d pay for two or three days after with exhaustion and pain. It was unthinkable to contemplate attending an event two days in a row or doing simple jobs around the property after a previous day of activity. My life has become less and less social over the years.
Truth be told, I’m a little depressed. The time between chemotherapy treatments has given me time to think, and thinking often gets me into trouble. So, I did an evaluation of my life to date going over high and low points, achievements and regrets. Probably a mistake, but one I’ve frequently made so I’m familiar with it. I even looked at pictures of myself over the years, from the time I was around two years old to quite recently. I thought about the different stages of my life, my time at home with my family, my time away to boarding school in Edmonton, my crazy teen years, working with my father, college, university, marriage, teaching, volunteer work, art, woodwork, etcetera. Then on top of that I overlaid health issues that I’ve experienced. I don’t need to go over all of my health problems here, but I had a few broken bones along with the discovery in the early 90s that I was vitamin B12 deficient and that I would need to inject B12 into my leg every month or so for the rest of my life. The discovery of my B12 deficiency was made when I complained to my doctor about fatigue, brain fog, dizziness, and that sort of thing. In 2002 I had my left kidney removed because I had renal cell cancer. Later I had an appendectomy. Still, I complained of fatigue, brain fog, dizziness and vertigo. There is a high incidence of Multiple sclerosis in my family so we chased that for a while but found nothing. Recently I was diagnosed with multiple myeloma which makes sense of all the other symptoms I’ve been having. I’ve probably had ‘smouldering’ multiple myeloma for years. So, now, I come to this:
I’m 73 years old (very close to it). I have bone marrow cancer, one kidney, B12 deficiency, degenerative disk disease (in my neck), arthritis, and who knows what else ails me. I’m old enough to die as Barbara Eirenreich argues and I’m okay with that, but the suspense is killing me. I’m being told that I could live quite a few more years with a few good ones thrown in there too. Still, I have incurable cancer and old age is coming after me. I’m beginning to envy people who die of sudden heart attacks or massive strokes. They have no time to think about all the things there is to think about.
I’ve discussed this with a friend of mine who also has multiple myeloma and his idea is that he doesn’t focus on his disease at all, or on his age, or any other potential killer. No, he focusses on what needs to be done: the shed needs a new roof, the canoe needs a new skin, baseboards need to be installed, grandkids need hugs. Dying will take care of itself when there is no other option, when it goes to the top of the priority list and refuses to be ignored any longer. I find myself thinking the same way. Yes, I get a little depressed when the extent of the threats to my life are displayed in front of me, but I get over it pretty quickly.
And I think about life and death. They aren’t opposites as we generally think of them. They cannot exist without each other. My life, like the lives of the nine generations of my ancestors who have lived in Canada are blips or interludes in the continuity of time and space. Mushrooms are a good analogue for us, I think. They push up through the ground cover from the mycelium below, flowering for a bit then melting back into the biomass to contribute again to the mass of life on this planet. Of course, for most of us in the course of history, thinking of ourselves and our species primarily as biological phenomena hasn’t been enough. The fact that we are temporary agglomerations of matter is not terribly satisfying for us and our big brains. We’ve loathed death and we deny it in every way we can, individually and socially. I try to face death as I face life. I try to put my life, my history, the phases of my body’s growth and decay in the broadest context I can. I don’t care to give them more importance than they are entitled to in the context of life on this planet.
My post on the social inequality in Emergency Departments is coming but my next one is about our immune system, the traitor that it is.
I was recently diagnosed (late September) with multiple myeloma or bone marrow cancer. My bone marrow has gone buck wild and is producing way too much of a particular substance the pathologist euphemistically calls ‘muck’. I’ve probably had it for some years, but the symptoms are very similar to those of other diseases and conditions making it difficult to diagnose. I’ve not been well for years. The past two years have been especially difficult and the last four months almost unbearable. I’m still functioning, but at a much-reduced level than I’m used to.
This isn’t the first time I’ve had cancer. I had kidney cell cancer in 2002 and had my left kidney removed in an operation that left me with one (fully functioning) kidney. Now my remaining kidney is compromised because of the multiple myeloma so things aren’t looking particularly good for me. There are still tests to be performed and a prognosis to be arrived at, but as soon as the test results are in the BC Cancer Agency in Victoria will give me a call and arrange an interview and set a course of chemotherapy. A lot will depend on the stage of my myeloma. Some people do very well with chemotherapy and new drugs are being developed every day to target the specific pathogen that’s attacking my blood. I still may squeeze a few more years out of this old body of mine yet, but the next few weeks will tell the tale. Multiple myeloma is not curable, but it is treatable.
I’m not afraid of death. I’ve often written about death and the cultural systems we’ve created to deny death, which actually build on our natural, biological aversions to disease and death. As you can easily ascertain by reading my blog this has been my main focus over the past few years. Dying is another matter altogether. I’m not particularly afraid of that either, but it is full of unknowns. I’m going through the various stages people do when faced with this kind of diagnosis: grief, anger, sadness, self-pity although these feelings are fleeting, and I soon get on to more positive emotions. I feel some guilt too. Yes, guilt. Guilt that’s impossible to escape in this culture. Guilt for succumbing to disease and death, the twin evils that we’ve identified as the greatest threats to us. In moral terms, and culturally, we abhor weakness, physical or social. Sick or poor people are to be feared in our culture. We tend to marginalize both if we can, but that’s not always possible because the world is not as simple as that.
I know I’m on my last legs. I’m almost 73 after all and have had a great life. Nobody gets through life avoiding death except in novels and movies. I have no idea how long I have to live, but whatever time I have I just hope that my quality of life improves enough so that I can finish some paintings I’ve been working on, maybe re-canvas our canoe and continue writing this blog. In fact, I’ll use this blog as a kind of journal chronicling the process of being ill, then diagnosed, then treated. Stay tuned.
Please don’t suggest any treatments or diets or whatever. I won’t be going to Mexico for any heroic treatments. (If and when I feel better we may go to lie on a beach though.) I’m not desperate. I won’t be buying a juicer either and I’ll continue to eat the great, wholesome mostly unprocessed food that I currently eat but my body will follow, as it must, the second law of thermodynamics. I’m okay with that.