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.
Please view the video that is linked below following the map of the property.
It’s a video I produced of Carolyn’s garden over the past few days. I’m no pro. That will become obvious as soon as you start watching. However, I felt a real need to post something positive of something beautiful. Not only are we facing the difficulties and challenges of multiple myeloma at home as a family, but we watch the news and witness the social restructuring caused by Covid-19, and we see the US facing very difficult times, violent times. We have friends and family in the US and it gives us no pleasure to see that country embroiled in the kind of racist injustice and authoritarianisms that has led to protests and violence. The militarization of the police in the USA (and in Canada) which has been going on since 2001 can only be a sign that preparations are being made to go to war against the very people who pay the taxes that support the police and the increasingly totalitarian American government. It’s a very complicated, dangerous situation. It’s hard to figure out, and harder to predict what will happen next.
So, take a break, relax…
For a few minutes enjoy my amateurish attempt at video production. I made this video in part because the Cumberland Community Forest Society cannot hold a garden tour this year because of Covid-19. Mostly, I wanted to celebrate Carolyn’s artistry in the garden. This video is a poor substitute for a garden tour, but if you enjoyed this video, please consider donating the price of a garden tour ticket to the Forest Society. Here’s the website address: https://www.cumberlandforest.com/protect/
Map of Property
This map should help you get oriented to the property. Carolyn created it for a garden tour a few years ago and edited it just now.
Now watch Carolyn’s Fabulous Cumberland Spring Garden 2020
Truth be told, I’ve always been a bit cranky. In the past though I was generally able to dampen my initial crankiness at what I perceived to be other people’s ridiculous behaviour, in the classroom, around town, in national and international politics, or on Facebook. I was able to step back, take a deep breath, and allow a sober second assessment of consequences and effects to take shape in my mind, making for a more measured response to the momentary ‘crisis’ whatever it might be. Oh, there were times when I reacted swiftly and even lashed out at people. I usually regretted those later. Ranting at the TV news was pretty common sport in the past when we still watched TV, a practice that I passed on to at least one of our daughters. I still rant like in the old days, but it’s more likely to be at a Facebook post or a news release posted online. However, ranting in private is different from personally and immediately striking out at someone for their perceived shortcomings.
Now it seems that my ability to generate a sober second thought is attenuating and my patience is wearing thinner. My private rants are turning into public displays of my impatience and I am now much less likely to bite my tongue when I think that people are being ridiculous or unreasonable. Of course that violates the first rules of teaching which, in my mind are patience and empathy. I feel really bad about that. My quick trigger reactions may be a consequence of my age and the fact that I have incurable cancer. It may be entirely idiosyncratic, but it could be that something else is afoot here.
Covid-19: the great disruptor
It could be that I’m not alone in my descent into more readily expressed displeasure at whatever affront, real or imagined, presents itself. Covid Times have created the conditions of uncertainty and disruption of habit that are hard for humans to take.
We, humans are creatures of habit and we don’t necessarily adapt readily or willingly to changes in our environment that require us to change the ways we live. We tend to react in our own ways to threats to our precious habits. Some of us hunker down even more deeply into already established patterns of social isolation. Others of us, like me, are more ready to express our pissedoffedness at the world. Now, more than ever seems to be a time of reaction rather than reflection.
It seems that people are now more than ever prone to stand on questionably acquired ‘knowledge’ rather than commit themselves to a course of study and learning that may lead to a more nuanced appreciation of economics, politics, current events, and other people’s actions both local and distant. And, since Trump, the ignorant minority is emboldened to speak out more often and vigorously. For us ‘experts’ who have spent a lifetime in study and reflection counteracting the tripe that comes out of YouTube and Facebook daily from people who have acquired whatever ‘knowledge’ they have from a marginal and peripheral relationship with analysis and evidence seems to be a lost cause. So, Covid-19 seems to have released some pent-up frustration at the world and our place in it and some people seem to be less reluctant than ever to stay silent in the face of it.
Covid-19 has definitely changed the goal posts in any number of ways, but life pre-Covid-19 wasn’t all that rosy either.
Pre-Covid-19, there were already serious cracks forming in the security and (often illusionary or delusional) stability of our lives. Personal debt dogged many of us to the point of financial ruin (and still does). Relationships were strained and addictions to alcohol and other drugs were on the rise as people self-medicated in attempts to deal with the emptiness that scoured their every wakeful moment and pitter-pattered through their dreams. Many of us were already leading precarious lives with no promises of a future with less stress and greater comfort and peace. General social distress was already reaching a breaking point when Covid-19 broke onto the international scene.
One thing I found particularly distressing was, and still is, the general ignorance of our global economic structures and their relationship to our nations, their sovereignty, and our individual choices. Very few people have any kind of a grasp on the intricacies of global supply chains and the interconnections of a myriad of corporations, factories and logistics experts on the conduct of business. The globally most powerful corporations have been masters at hiding the truth about mass production, distribution and sales. People think that ‘China’ is flooding our markets with cheap product and that our poor domestic corporations are suffering from this unholy competition. Nothing could be further from the truth.
Global corporations, many of them with very unfamiliar names, control global trade and often subject local businesses to rules and practices that benefit global finance capital rather than citizens. Look closely at the things you buy and more often than not these days you will not be able to locate where a product is manufactured. A label might tell you that a product was produced for such and such a retailer by such and such a manufacturer (with an address in Canada) by a factory in China, either owned by a ‘Canadian’ corporation or contracted by them, but it won’t tell you where a product was made. There is now a big silence about the true picture of global commodity production. But because no changes have been radical and the information to consumers has been accomplished slowly and inexorably completely under the radar with government complicity, it’s very hard for people to figure out what’s going on. Our lives are being orchestrated by forces hidden from us until something like Covid-19 comes along to expose some of the weak underbelly of globalization.
It seems many people now are worried about governments ‘taking away their freedoms’. Well, I have news for those of you who believe this: you have been slaves to the marketplace and an insidious capitalist morality for ages, but you don’t even recognize the bars that imprison you. You believe that a job is the one way to heaven. That no one should be given “free money” by government because that saps initiative. That individual action rather than community is the only thing that counts. You’ve bought into the tired, sick, libertarian agenda that feeds the globalist corporate agenda and leaves us poorer and fighting amongst each other. You believe that government is in charge and that its actions are the sole source of all the problems that you face in life. So delusional. So misguided. So sad.
There is no question that we need to be vigilant when it comes to government. With people like Jason Kenny, Doug Ford, mini-Donald Trumps at the helm of government, you can be assured that the global corporate agenda will be a high priority and the care and feeding of the citizenry will always take second place. Justin Trudeau and his Liberal Party are just a softer version of corporate lackeyism. Make no mistake though, Trudeau and his party are solidly behind the corporate agenda. It feeds them and they feed it with subsidies, grants, tax breaks, and with help cleaning up their messes when they decide to go strategically bankrupt or simply abandon ship. But enough of that.
Myeloma be gone…for now!
To change the subject, my cancer seems to be on the run for now. It will come back. Now I just have to deal with the side effects of all the drugs I’m taking, some of which I take to counteract the effects of others I’m taking. Virtually all of them have dizziness as a side effect. It’s a wonder I can even stand or walk ten feet on a good day. But I do walk, a bit wobbly I must admit, but still, I get out there and do things. It’s very gratifying. It’s wonderful. I didn’t think I’d ever be able to get out into the garden or into my shop or studio and do things, but I can. I know I’ve already told you this before, but I’m so happy about it, I just want to revel in it.
I also just want to revel in the garden. I’m working on a video right now of the gardens, but it’s a bit frustrating because things are growing so fast that I keep being tempted to re-video things that I’ve already recorded to give you a better sense of the beauty of the place, Carolyn’s own fabulous art project. Look at these amazing poppies. A couple of days ago there was only one or two blooms. Now look at them and there’s more to come, lots more! [since I wrote this more have opened!]
Have a nice day, all of you! Keep your chin up! Don’t get too pissed off! Enjoy whatever you can (unless its murder or domestic abuse).
Yes, I really should know better. This is the pattern: I sense a marked improvement in my wellbeing. I start to do things. Maybe I do too much. I injure myself. Now I can’t do much again! Damn!
The problem is that I have myeloma, alright and I’m taking chemo meds, alright, but that doesn’t mean I will be distressed exclusively by cancer related issues. At the moment I’m experiencing pretty severe IT band pain. That means my left side, hip and upper leg are quite painful to the point of preventing me from sleeping. Of course I can take extra hydromorphone to alleviate the pain, but that has its consequences. If I take enough to get to sleep it’s like I have a hangover the next day. That’s not terribly pleasant and I don’t like it.
It’s so tempting, though, to do things! And there are lots of things to do. For instance, even though I shouldn’t be kneeling or getting down on the ground because of the lesions in my femur, I did that anyway while working to fix the irrigation in the garden a few days ago, just one of those things needing to get done. Now my back is chastising me for doing that, and it’s especially gleeful in its chastisements at 3 AM. As I sit here writing this, I can feel the pain slowly increasing in my lower back. I had surgery on my lower back about a hundred years ago, but the scar tissue still causes me pain now and again. Over the years I developed coping strategies to deal with lower back pain, but every once in a while my enthusiasm to get something done interferes with the caution I should be exercising in doing anything physical. I can still do things, but I just have to be smart about it. Unfortunately, sometimes my smarts abandon me and my frontal lobe meekly succumbs to the bullying from my amygdala. Brain wars. This part of my brain says “Yes, do that!” Another part says, “You know better than that!” Which brain part wins is sometimes a toss-up, but more often than not, the do-that part of my brain wins and my lower back sooner or later exacts the price. These days, as I get older and older, the price is exacted sooner than later and lasts way longer than I find reasonable.
I’m just coming to the end of my fifth chemo cycle. Today is a chemo day, but I only take one of the three drugs I normally take earlier in the cycle. So, no dex and no bortezomib. That means no dex high to counteract the cyclophosphamide downer that always happens on chemo day. Bummer. I got to looking forward to my dex days. I got a lot done on my dex days!
Today, I could barely do anything. We went out to the hospital lab this morning to prepare for my visits with doctors next week, then I waited in the car almost falling asleep while Carolyn did some shopping, first at Art Knapps (AK), then at Thrifty’s. I was pretty dozy, but I couldn’t sleep because I kept getting distracted by the parking lot antics of people coming and going from the stores. People coming and going from Art Knapp’s were quite entertaining. Apparently there is a number of people of all ages who shop at AK who can’t read or have attention-deficit issues. The new signage telling people that the former entrance is now an exit-only door flummoxed quite a few shoppers who couldn’t figure out the new rules.
Starbucks at Thrifty’s is still busy it seems. A number of people had coffees in hand as they got back into their cars. I was surprised at how many people came out of the store with only a couple of items in hand. One woman pulled up beside our car in a black twelve cylinder biturbo Mercedes hard top convertible, went into Thrifty’s just to come out a few minutes later with potted flowers, that’s it, just as a classy guy who parked his van across from us (clearly marked with his business name all over it) spit on the pavement every couple of steps he took as he walked towards the store, muttering to himself between spits. So much for shopping only once a week or being super cautious in Covid Times. How could I sleep with all this entertainment going on?
When we got home it was nap time. I slept for two hours. I hope I can sleep tonight after that.
Now, you can feast your eyes on this amazing forty year old wisteria that has a trunk at the front of the deck then snakes around along a structure about 7 feet off the ground for probably 10 metres. It’s beautifully aromatic and frames the table and chairs on the deck.
What better way to finish a blog post. Soon I will post a video of Carolyn’s amazing gardens. There’s no other way to show it off right now, so I’ve polished up my rudimentary video skills and enlisted my basic Sony video camera to put together a 20 minute video. I’m not a great narrator so I’m working on setting it up without talking too much. It’s Carolyn’s birthday on Monday so this video is partly a birthday present for her. Still in love after 47 years. It helps that we’re both a little crazy.
Some of my artist friends have remarked that over the past month or so that they haven’t raised a brush to canvas, or engaged in any other art practice. It seems that gardening and cleaning have taken precedence over art production in the past while. For many, isolation, the cancellation of art shows, and slow sales have dampened creativity. That’s been my experience too. I’ve done a little drawing, but the bulk of my time recently has been taken up with cleaning my studio and workshop and doing maintenance projects around the property to the extent that my energy and pain levels allow. I have not written anything in quite some time. My last blog post was about our gardens here and not so much about my myeloma or Covid-19. Carolyn’s gardens have been so uplifting!
That said, Covid-19 certainly has me tongue-tied at least as far as talking about my cancer goes. The myeloma that I’m plagued with seems to have more or less evaporated, at least according to my lab results. It’s still incurable, but it’s likely that I will go into remission by the end of the summer and thankfully get a break from chemotherapy, I’m hoping for a long break. Of course, the oncologists promise nothing and I can understand that. So, it seems, myeloma is not the cause of my current health deficits, rather, the chemo drugs are largely responsible for the many side-effects that I experience every day. Old age, of course, has slowed me down. As Robert Sapolsky writes:
“we are now living well enough and long enough to slowly fall apart. The diseases that plague us now are ones of slow accumulation of damage—heart disease, cancer, cerebrovascular disorders.” (from “Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping (Third Edition)” by Robert M. Sapolsky)
Yeah, that’s me. But, strangely enough, about a month ago I started feeling better. I suddenly got more energy. I could use my shop again and do things I have been unable to do for months. I seriously doubted that I would ever be able to handle tools again, especially chainsaws and the like, but I am. It’s wonderful! It makes life worth living again. I think my improvement is in part the fact that my body is adapting to the chemo drugs.
For some time I seriously wondered if I was not destined for a few more years of moderate to severe constant pain, low energy, dizziness, peripheral neuropathy, bowel issues, irritated eyes, headaches, and various other unpleasant bodily sensations. Death seemed preferable, frankly, although the thought of dying never did appeal to me at all. I may be able to intellectually accept the idea, but the reality of end times is another thing entirely.
Feeling better was such a relief. Then Covid-19 assaulted our lifestyles and sociality to an extreme, and we’re still trying to figure out where we go from here. Confusion reigns. What will the summer be like? Will the kids be going back to school in the Fall? Will we be able to get out canoeing at all this year? These are all open questions with no definite answers.
For a sociologist, Covid-19 and other potential future pandemics are an unintended consequence of globalization and are inherently interesting by that fact. The world has shrunk substantially over the past forty or fifty years in ways that are not readily obvious or apparent. Manufacturing businesses only incrementally moved their production operations off shore. The changes were, and still are almost imperceptible. It’s hard to pinpoint the exact time when refrigerators, car parts, computers, tools, etcetera were no longer produced in North America, even though they are still largely designed here by corporations that still control their manufacture and assembly in places like Wuhan, China sometimes in plants they own and sometimes by Chinese contractors.
China has made it easy for them by establishing export-processing zones free of taxes, health and safety regulations and with low wages.
We know the container ships are out there. We know the airlines blanketed the earth with flights carrying both cargo and passengers at rapidly rising rates, and the internet has made just-in-time (Japanese-type) production possible along with the easy flow of finance capital. I can’t imagine there’s any turning back the clock on globalization, but the pandemic has exposed one very serious Achille’s heal of global corporate capitalism. When commodities and people move so easily and necessarily all over the globe in such immense volumes, it’s no big deal for viruses to hitch a ride on unknowing and unsuspecting travellers. The price of cheap commodities is exposure to viral threats that were previously contained in specific geographical areas. Smallpox was not the first pandemic but when it was introduced to North America hundreds of years ago now it killed tens of millions of indigenous people in wave after wave well into the Nineteenth Century. The Black Death in 14th Century Europe probably originated in China and arrived in Europe via new trade routes. It also killed tens of millions of people. We open up long distance trade at our peril. History has taught us that, but we haven’t learned anything from it. Seems we failed the exam.
So now what? Well, a friend (an anthropologist) and I discussed this last Monday evening and we concluded that although corporate America and Canada would love to control the process and the narrative, the more likely issue for business profits will be whether or not individuals like you and I gather up enough confidence to get out there and spend money on services and commodities. If we don’t, or are slow on the uptake thanks to successive waves of Covid-19, business will flounder and will have to rethink a globalist strategy that for decades has laid a golden egg for them. That won’t be easy for a number of reasons, one being that productive capacity has escaped national containment and it’s near impossible to produce a Ford motor car these days without assembling over four thousand parts made all over the world in factories from Mexico to China to Sri Lanka and India. It used to be that Ford produced cars in Dearborn, Michigan from scratch, bringing in all the raw materials necessary in the production of a car and making all the parts on site. Those days are long gone. Can they ever return? Maybe, but the price of vehicles and everything else is bound to rise if the nationalization of production were to be successful, possibly making most vehicles and most other commodities unaffordable to an increasingly impoverished workforce. Catch-22 is real. We’re living it right now.
Thankfully we still have our garden. Here are some pictures for you: The first three images are of the same scene taken a week to ten days apart. The greening has been very fast thanks to ideal growing conditions. The others are just a collection of pictures of flowers I chose at random. Enjoy!
Voici des photos de muguets sortant dans notre jardin, qui, à ce temps de ‘année est un explosion de nouvelle vie. Nous avons environs un demi-hectare de jardins qui entourent la maison et qui sont certifiés comme refuge pour les oiseaux, surtout les passarines, les pinsons, les merles et leurs cousins. Nous soignons plusieurs genres de passarines y inclus des colibris ainsi que des moineaux, des piverts (qui adorent a graisse de rognon), des gros becs, et de temps en temps des Geais de Stellar. J’ai inclu dans le poste précédent celui-ci des photos de nombreuse fleurs qui sont présentement en évidence dans le jardin.
C’est évident que votre climat nous dépasse d’environ une semaine ou deux en ce qui attrait à l’arrivée des muguets . Ici sur la côte ouest du Canada, sur l’île Vancouver au 45,25 degrés de latitude nous jouissions d’un merveilleux climat passablement doux et nos jardins font preuve de la fécondité de la région.
Nous sommes fiers de nos jardins et nous encourageons des visites…malheureusement pas cette année tandis que nous somme tous en confinement.
La jardinière est l’artiste qui encourage son jardin à produire des tableaux de beauté et de vie.
I’m writing today to let you know what’s up with me. I still don’t intend to embark on a regular program of blog posting, but things have changed for me over the past while and I thought I’d let you in on the changes to my situation. But first, a bit of a re-cap.
When I was diagnosed with multiple myeloma in early October of last year, I was in pretty rough shape. It became clear to us then that I had had myeloma for some time before, probably for years. Over the past few years I’d had to back away from a number of volunteering gigs because I was too exhausted most of the time to be of much help to anyone. I was not much help around the house and property either. I stopped painting and drawing, and sculpture was out of the question. It was no fun at all. I felt rather useless. And because there was no diagnosis for years, I questioned my own sanity and vitality. The cancer diagnosis was patently not what I had hoped for, but it was an explanation for how I felt and for the pain and exhaustion I had experienced for years before. In some ways, I felt a sense of relief.
Then, in November, 2019, I became a full-time cancer patient. Myeloma became the main focus of our lives. We read everything we could about it online. We went to Victoria for a consultation with the oncologist I was assigned to at the BC Cancer Centre. That trip turned out to be a disaster. Aside from the myeloma that was causing me a lot of pain and distress, during that trip to Victoria I had to deal with a flare-up of a chronic degenerative disk problem, and of the arthritis in my neck I’ve had for years. I can’t tell you how discouraging that was. I was practically an invalid to the point that we asked around to see if anyone had a wheelchair we could use because we figured I’d need one.
The chemo regime I was initially put on caused me to get a huge rash all around my midsection, so my oncologists decided on a different cocktail of meds. This was quite discouraging because I wondered if there was any cocktail of chemo drugs that would work for me. Finally, my oncology team settled on the set of chemo drugs I’m on now. I’ve just started my fifth five week cycle of chemotherapy. I’m scheduled to continue on this program at least until late summer.
At first the chemo drugs kicked the shit out of me. By that time, I was also taking a low dose of hydromorphone, a synthetic opioid, to deal with the pain, and I had to take Dulcolax to deal with the inevitable constipation brought on by hydromorphone. My peripheral neuropathy was extremely annoying in that my hands and feet would constantly go numb and tingly. My whole pelvic area seemed to be on fire at times.
The first three cycles of chemotherapy had me questioning whether or not I should just shut it down and deal with the consequences. I couldn’t see myself living for any length of time in this state of pain and exhaustion.
Then, something changed. I don’t know if it’s because my body has been getting used to the chemotherapy or that the meds have been very effective in dealing with the myeloma. Over the past while, my bloodwork has gradually indicated a complete attenuation of myeloma symptoms. My blood seems to be back to normal and the signs of myeloma have all but disappeared. That doesn’t mean I’m cured, by any means. It just means that I may be going into remission. How long that might last is anybody’s guess. When the myeloma comes back, my oncologist will put me on another course of therapy. That could carry on for years to come.
So, lately I’ve had a surge of energy and I’m now able to do things! Oh, I still have pain and I still get tired, but I can do stuff! For instance, I’ve been able to help Carolyn build boxes for her garden beds and yesterday we rebuilt part of the structure that holds up the massive wisteria we have that surrounds our deck. I even used my chainsaw! If you had told me in January that I would be using a chainsaw in April I would have laughed in your face.
So, yes, I’m still sick with myeloma, but I’m now without major symptoms of the disease, and the hydromorphone is dealing with the pain I still have and will continue to have for the rest of my life. I can live with that. Basically, I’m feeling well. My body seems to be tolerating the chemo drugs much better than over the past few weeks. Some of the side effects of the chemo drugs are quite nasty, but I know how to deal with them now. I’ve become a proficient cancer patient.
Now, if we could only get rid of MARS-Cov-2, I could, we all could, get back to some proper socializing and I could hug my grandchildren again. The truth is, however, that my life hasn’t changed much because of the pandemic. I’m highly susceptible to infection because of the chemo and I can’t be around sick people for that reason. Covid-19 has just made it so that we have to be extra careful.
So, I’m cleaning up my studio and my shop. I’m looking forward to doing some painting, printmaking, drawing, and sculpture. I’m working towards restoring our canoe. The fact that I can even contemplate these things has changed my life yet again. Overall, I’m pretty happy with the way things are going.
The situation in the world is another thing entirely. The irrationality of modern neo-liberalism in the face of climate change and the pandemic continues to cause me consternation and worry. I hope we, as humans, can collectively get our shit together and build a more modest future, one in which we are in tune with each other and the natural world of which we are a part. I know so many good, caring people, but the structures of global capital run deep and are highly entrenched. Ignorance and denial still characterize large segments of the population. Even with the majority of the population consisting of good, caring people, I have no idea how to fight these massive reactionary forces. Covid-19 has shown us that massive changes is possible and desirable for our quality of life, although it’s probably not a good idea to leave desired social change to the recurrence of deadly pandemics.