56 Confessions (and the weather)

The weather has been so unpredictable lately. The meteorologists at the Weather Office must be gnawing their fingernails off. It’s been great for the garden overall except now it would be good to have more heat and sun to ripen the berries. We’re eating a lot from the garden now. Cucumbers, lettuce (so much lettuce), tomatoes, zucchini, broccoli, cauliflower, kohlrabi, and lots more. I fell kind of bad that we can’t support the farmer’s markets, but no. We can’t do that. Of course the farmer’s markets have way more than just veggies and fruit, but then there are other reasons I don’t go to places where people gather, at least not regularly and not willingly.

We sat on the porch today looking over the front of the property and off toward the village. The clouds came through at different elevations, the higher ones travelling west to east and the lower ones southeast to northwest. It was sunny at intervals. It rained a bit. It was around 20˚C most of the day. Not at all unpleasant. Tilly was her usual goofy self entertaining us with her antics on the patio. She really is a laugh a minute, that is, when she’s not biting us. Sometimes she just wanders over and sits at the top of the driveway surveying the yard below. I’d love to know what kind of puppy thoughts are going through her head.

As usual for a Thursday I took my chemo oral drugs on the early morning then went to the hospital for my Bortezomib shot at 10:30. When I went in, there was just a short wait for the lab (not that I was going there), but when I came out, there was a lineup outside going almost around the building, probably thirty people, some in wheelchairs, some with walkers waiting for clearance to even step into the hospital. Some were going to the lab (for a long wait) but others were going for imaging or to the Bone people, or wherever. You stand in line whether you have an appointment or not.

Everybody gets the standard Covid-19 song and dance: Have you travelled out of the country in the last 14 days? Have you been in proximity of someone who has tested positive for Covid-19? Do you have a fever, cough? Etcetera? I usually stack up the nos at the very beginning of the process and that usually works but not today. Today I got the full meal deal. Everybody was getting it. No wonder the lineup is so long. Of course it has to be done. I’m really not complaining. The Covid-19 protocols these days appear to be just as unpredictable as the weather. Oh well, we carry on.

Just as unpredictable as the weather is how my body is going to react to my chemo drugs. It’s been a nasty ride lately with Bortezomib creating havoc with my nervous system, making my skin on my legs and torso very sensitive to painful to the touch. Added to the pain is a weakness in my legs that is now making it very difficult to move in ways I always previously took for granted, like tying my shoes or picking something off the floor. That’s very distressing. I must confess that I’ve had moments when I have felt pretty sorry for myself. Fuck cancer!

Now I’m on a very low dose of amitriptyline, a drug that was developed for depression (at 100 mg/dose) but was also discovered to help with pain at a dose of 10mg, the dose that I’m on. It has side effects, like they all do. Pile side effects on top of side effects. What drug is doing what is anybody’s guess. The pain in my legs and back is so distracting, and along with the usual dizziness I experience all the time, I get a pretty constant brain fog. I can still put together a coherent thought, but I have some difficulty communicating those thoughts sometimes. Not always. My brain is like the weather right now. Some coherent thinking. Some stoned time. Some sleepiness. Not always in the right order. Unpredictable is what it is.

The fact that I can even write this is due to some momentary clarity induced by another of my drugs, dexamethasone. It won’t last long, so I had better hurry and get this done. I’m really wondering right now about this whole business of oncology. Like, how is it that a drug can be approved to treat a condition, in my case, cancer, yet produce side effects that are debilitating, potentially for the long term? What’s the goal here?

It’s pretty obvious after reading The Emperor of all Maladies by Siddhartha Mukherjee (2010) (a book review here), that the objective of oncology, both clinical and research is to prolong life. Many people have died because of the effects of chemotherapy. As far as drug trials go the Golden Chalice is survivability. If they get 5 months more survivability with a drug that’s considered a successful trial. Since Mukherjee wrote his book, lots of progress has been made and lots of animals have been sacrificed to the cause, but they still can’t engineer Bortezomib to do good work and to avoid beating the crap out patients just in order to keep them alive. Of course, the instinct of self-preservation is strong in most of us to the point where we are more often than not willing to sacrifice a lot just to get more life out of the deal.

My chemotherapy is really working well as far as the myeloma is concerned, but at what cost? It’s a straightforward cost/benefit analysis and I’m working on that right now. I have a strong will to live, and I’ve seen people in a lot worse shape than I’m on stick it out and squeeze the last bit of life out of their decaying bodies that they can. So far I guess my actions have betrayed my values as is the case for most of us most of the time. More on this in my next post.

55 Two sickos, a baby and a garden.

Carolyn has her hands full these days, does she ever. I’m experiencing some particularly nasty side effects of one of my chemo meds weakening my legs to the point of near collapse, and last week we found Princess, our cat, in severe distress requiring long stays at the vets and heroic efforts to save her life. On top of that, there’s the puppy we brought into our lives. She’s a wonderful addition to the family, but she’s a rambunctious puppy, demanding of attention and needing some training to stop her from biting us incessantly, ripping our clothes and our bodies. Then there’s the garden.

The Garden

Speaking of the garden. It’s unbelievable this year. We’ve been eating lettuce from the garden for weeks but now the peas are coming on strong and the broccoli, cauliflower, and kohlrabi are in the pot. Some of the raspberries are ready to pick, the tomatoes are coming on as well as the zucchini and cucumbers. We’ve never had much luck with root vegetables, but this year it looks like the potatoes, carrots and beets will produce lots of tasty treats. The garlic is a bit behind this year but should be ready to pick in a week or so.

The cedar trees are loaded with cones this year to the point where they’re dragging the branches down. My favourite flowers, the lilies, are opening everywhere on the garden and this year we have a rare pond iris bloom. Such a delightful show! The birds are active too and the squirrels are busy picking the not-yet-ripe cherries. Looking out the living room window right now I’m seeing an American goldfinch, a purple finch, a couple of woodpeckers going after the suet attached to the feeder and a congeries of species, mostly thrushes, towhees, chickadees, and finches. At the pond is where we more often see kinglets and warblers. Of course, hummingbirds dash about in their usual frenzy all over the garden. So much to eat these days for all the birds.

Me

It’s been tough lately. I’m in quite a bit of neuropathic pain from one of my chemo drugs, something I’ve already written about a couple of posts back. My legs want to give out on me and if I should ever get down on the ground, I can’t get back up on my own. It’s downright discouraging. One of the main problems with this is finding the right pain med to deal with it. Hydromorphone is ineffective against neuropathic pain although I’m always tempted to take it so that I get stoned enough to be able to sleep. But I don’t like that strategy so I’m looking to other ways of getting by. I’m cutting back on my hydromorphone and taking more acetaminophen. That seems to allow me to sleep better while avoiding some of the worse brain fog and intense fatigue that I get from the opiates.

It may be that some of the back and leg pain I’m feeling is from conditions other than those produced by myeloma or chemo. To see if there’s a mechanical issue, my local oncology GP has ordered an MRI to check things out. He also suggested I think about taking Gabapentin or Lyrica, but I’m not having anything to do with those drugs. They may help in some ways, but they can create lots of problems I don’t need. I’m talking to the palliative care people too and they may have suggestions. In the meantime we wait and hope the pain attenuates. I’m operating at a very reduced capacity at the moment. Must carry on, though. No point in quitting now.

Thank goodness I have Carolyn and the garden for solace.

Princess Pretty Paws

Princess is at least ten years old and has been very healthy since we got her two or three years ago. Last week we got the puppy and Princess disappeared. At first I thought there might be a connection, but Princess is not the kind of cat to run away. In any case, Carolyn found her upstairs a few days ago. She was obviously in distress. We think that she may have been hiding out in the crawlspace as she got sicker and sicker. So Carolyn immediately took her to the vet. Princess stayed there a few hours for observation and tests. The vet was at a loss to figure out what was wrong with her. The one real anomaly in her blood was a high bilirubin count indicating a liver problem. We thought it might be poisoning, but that wasn’t the case.

It turns out she has a serious problem with a bowel infection or something along those lines and she has inflamed organs. So what to do? Well, some people might have decided to put her down but that’s not our style. More tests and more again. She saw the vet three days last week as well as today, on Sunday. We have a great vet!

Princess has been on a feeding tube for three days now and we seem to have that under control. She’s on lots of meds that we give her at feeding time. Her fever has dropped, she’s eating (through the tube) and she’s getting more active. She’s not throwing up and she’s using the litter box. All good signs. So we carry on and see how it goes. We keep our fingers crossed. No point in giving up on her now!

Matilda (Tilly)

Matilda (Tilly)

Tilly is a Bernese Mountain Dog, Shepherd and Maremma Italian sheep dog cross. She’s nine weeks old and is a gift from our amazing daughters and their families. She has a great personality but like most puppies of that age is teething and biting is something she does indiscriminately. She plays rough. She bites whatever comes along: cardboard boxes, chewy toys, table legs, blankets, and us, of course. Carolyn’s arms are scratched up quite badly as you might expect. Mine are less so. We’ve found some puppy social classes for her and with some training she’ll be just fine. She’ll grow into a wonderful, mellow girl. For the moment though, she is a handful. There’s no turning our backs on her for a second. She’s very fond of the fountain next to the deck and lays on the rock taking a nip at the fountain from time to time. She’s figured out how to get under the deck and she goes from one end of it to the other under there. She figures that’s a real hoot. She loves her treats and is now responding readily to the sit command but she might just ignore that if she she wants to play, meaning attack and bite us. To be fair, she can be gentle too and plays by herself quite well. She’s not always bitey.

We’ll have to be very vigilant when Princess starts wandering around the house and property. We don’t want Tilly chasing her. It will be a challenge.

So there’s sorrow in the household at the moment but there’s a lot of joy and hope too. Be careful out there in the Time of Covid-19!

54 Describing Pain can be a Pain.

But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.

Princess and the Fountain.
Puppy. No name yet.

So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.

I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”

Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”

One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.

So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.

Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:

Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.

Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?

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1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.

51 Cranky old man, Covid-19, and the garden.

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.

The garden

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!]

Poppies along the driveway.

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).

50 I Really Should Know Better…and Wisteria.

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.

46 I’m sick, but I’m well.

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.

44 On art (poiesis) and the search for meaning in my life.

[I started writing this at 4:30 this morning. I don’t usually get up before 7:30, but my chemo meds keep me awake sometimes. I’m on a dexamethasone high. In other words I’m stoned. Let’s see how well this comes out. Well, I’m no longer stoned. It’s now 6 PM, and looking it over, I. think it’s fine, but I’ll let you be the final judge of that. It’s only a coincidence that this is the 42nd blog post in this series.]

Over the past few months, since I was diagnosed with cancer I have been on a search for the meaning of my life. I haven’t always recognized that in myself or acknowledged to myself that that’s what I was actually doing, but that is in fact what I have been doing pointedly and with urgency. There is probably nothing more capable of focussing the mind than facing a firing squad or a hearing a physician’s determination that one has an incurable cancer. The problem with the firing squad scenario is that there is no time for any reflection on the meaning of life before the bullets put an end to all reflection. At least with a cancer diagnosis, there is time for reflection. I have limited time left as a human expression in the biosphere, so I intend to use that time fully as a mortal in reflection on the meaning in my life, but more importantly as a generator of art, what Plato called poiesis.

In my life I was able to go to university and a get important post-graduate degrees in Sociology. Those years of study and reflection were exciting, stressful and tinged with contradiction at every turn and I got through them in spite of the system and not because of it, as I was fond of telling my students repeatedly over the years. I was able to learn many ‘things’ but the most important result of all of those years was my license to teach, to engage in an important aspect of my art.

Licenses are important. They are society’s way of legitimizing and concretizing in a title the fact that in the past one has acquired sufficient knowledge and capacity in a field of study or work to pass it on to others, operate equipment or on people, fix our plumbing and in a myriad of other situations. Over the years, my teaching was my art, although it was also my way of making a living and that contradiction was a constant source of irritation for me, and for people around me too, especially my long-suffering loved ones, Carolyn and the kids. During that time, though, I also engaged in the ‘plastic’ arts, in drawing, painting, and eventually in sculpture and printmaking. For most of my life I considered those latter pursuits the artistic part of my life. However, more recently, with my new sharpened mind engendered by my cancer diagnosis, I have been able to look back on my life and conclude that I was always an artist. I may have been born that way, but I think it was more an inadvertent result of my upbringing and the circumstances surrounding my birth and early years. I know now that my parents were also artists in their own ways. I know for a fact, because I worked with him at times, that my father struggled his whole working life with the contradictions he had to face every day having to earn a living doing things that were averse if not actually an insult to his inherent creativity. My father was a master craftsman, inventor, blacksmith and planerman. He was functionally illiterate too. My mother had a grade eight education and could read and write quite well. She had ten children, all still alive and kicking. Can we question her creativity? Definitely not her biological creativity, but she was creative in other ways too. She could sew up a storm and knit, cook like a pro and bake. Mygawd, could she bake! Later in life, after all the kids could look after themselves she took over my father’s workshop and started building all kinds of things out of wood. I still have a table by my bed that she built. It means a lot to me. Then, my father decided to sell the house and move into an apartment. That was the end of woodworking for my mother. She pretty much lost interest after that and it wasn’t long after she got Alzheimer’s dementia and that was that.

I feel I really need to explore in writing what my parents must have gone through during the time I was born and for some time after, and how that shaped who I became and am becoming still. I feel this exploration, my writing here, is part of my legacy, part of what I leave behind for you to learn from or simple contemplate as you would a painting on the wall in your living room, if you are fortunate enough to have a living room that is. My aim is that it engenders creativity in you, its beholders.✿

In any case, I was born on January 4th, 1947, which means I was conceived sometime in April of 1946. My parents were married on January 28th 1946. My father’s first wife, Yvonne Gaucher, died on June 22nd, 1945, seven months before my mother and father married. She died in childbirth after having five daughters. The baby, if it had survived, was to be called Roger, and I would not be. As the fates have it, he died and I was born 19 months later and they named me Roger. Can you imagine the stress my father was under? And my mother? My father had five daughters to look after. He made a call to my mother’s family in Alberta and my mother agreed to come help, look after the children and do all the domestic work. My mother and father had known each other in Alberta before he moved here with his family in 1937. Apparently my mother and dad’s first wife knew each other quite well. A short time later they were married. I can’t imagine what he was going through and we never talked about it.

Of course I was treated like a little prince. Not only was I the first boy in the family, but I had survived childbirth and so had my mother. I don’t really know what to make of my early days, not really. My mother soon had more children so my special status was soon eroded, but not much because my mother then proceeded to have four daughters in a row right after me leaving me the only boy with nine sisters. She had three more sons, interspersed with a couple more daughters.

So I have fourteen siblings in all, one of the older ones dying a few years ago of cancer. The rest of us are all still alive and kicking although a couple of my brothers-in-law have died last year. Many of my siblings are what I would call creative or artistic in work and in play. Five are afflicted with MS or another autoimmune disease. An altogether crazy bunch, but I love them all. What influence they’ve had in my life I can’t really say although they have been supportive when I needed it. And I really needed it when I was in my late teens and early twenties, depressed and suicidal. I could always count on my family. There was always a place for me at the table and a shoulder to cry on. Now I can say that I’m neither depressed, nor suicidal and I haven’t been for some time. Some people might argue that I have a right to be depressed, but I know now what depression is and it’s a waste of time. I don’t need it.

Alright, so what do I make of my life? Well, I’ve made it clear in a number of recent blog posts that I’m not chasing immortality. I’m a happy mortal kind of guy, but that doesn’t mean I’m looking forward to dying. My myeloma is being managed successfully and I may live for another ten years, who knows. When it’s my turn to die, that will be just fine. We all come to the end of the line. Songs have been written about it.

Still, it took a cancer diagnosis and what I thought was imminent death from an incurable cancer to ask the question: What meaning did my life have? What meaning does it have? In the face of death, is there any meaning? These are questions Tolstoy was preoccupied with. As Ernest Becker reports in Escape From Evil: “When Tolstoy came to face death, what he really experienced was anxiety about the meaning of his life. As he lamented in his Confessions: ‘What will come of my whole life…Is there any meaning in my life that the inevitable death awaiting me does not destroy?””

My answers to these questions came to me slowly at first over the last few weeks, then more pointedly only in the last few hours. I got answers by reading writers I knew would not fail in helping me answer these questions. The first was Ernest Becker and his book Escape from Evil (1974). Becker always knows the right words to say. He reminded me of the cultural significance of the fear of death and its significance for my personal encounter with death. Norbert Elias I read carefully. His book What is Sociology (1970) reacquainted me with my own discipline in a new, fresh way, a way of locating myself in time and space in a cultural project of criticism which clearly preceded me and will continue without me. But what of my career as a teacher? Recently I picked up a book that had been sitting in my library for thirty years untouched. It’s a book by James P. Carse called Finite and Infinite Games (see the note below). This is the book that triggered my recent reflections on my life as an artist. One section of his book deals specifically with art and culture and the relationships that we have with art as artists. I could have re-read Otto Rank’s Art and Artist but Carse does that for me. Rank’s book is always close to hand but it’s falling apart do to the handling it’s received over the years. Carse argues that the greatest struggle for any society is not with external enemies, but within itself. In society, we strive for titles, recognition for past achievements. But poietai (artists, inventors, storytellers, makers, etcetera according to Plato) are makers of possibilities. He writes (and this is a long quote):

The creativity of culture has no outcome, no conclusion. It does not result in art works, artifacts, products. Creativity is a continuity that engenders itself in others. [quoting Rank] ‘Artists do not create objects, but create by way of objects.’

Art is not art, therefore, except as it leads to an engendering creativity in its beholders. Whoever takes possession of the objects of art has not taken possession of the art.

Since art is never a possession, and always a possibility, nothing possessed can have the status of art. If art cannot become property, property is never art-as property. Property draws attention to titles, points backward toward a finished time. Art is dramatic, opening always forward, beginning something that cannot be finished.

Because it is not conclusive, but engendering, culture has no established catalogue of accepted activities. We are not artists by reason of having mastered certain skills or exercising specified techniques. Art has no scripted roles for its performers. It is precisely because it has none that it is art. Artistry can be found anywhere; indeed, it can only be found anywhere. One must be surprised by it. It cannot be looked for. We do not watch artists to see what they do, but to watch what persons do and discover the artistry in it.

Artists cannot be trained. One does not become an artist by acquiring certain skills or techniques, though one can use any number of skills and techniques in artistic activity. The creative is found in anyone who is prepared for surprise. Such a person cannot go to school to be an artist, but can only go to school as an artist.

Therefore, poets do not “fit” into society, not because a place is denied them but because they do not take their “places” seriously. They openly see its role as theatrical, its styles as poses, its clothing costumes, its rules conventional, its crises arranged, its conflicts performed, and its metaphysics ideological.

So, if my life has been about engendering engendering creativity in the beholder, I think I’ve done that, at least to my satisfaction. Obviously, the best judgments of my impact on people must come from them. Ask my former students and people who contemplate my art embodied in the works I have created and you’ll get varying answers. All I can say is my objectives in my classes and in my paintings, prints, drawings and sculptures have always been to engender a surprise and a new commitment to creativity. Therein lies some of the meaning in my life. I’ve been fortunate to have more. My children, grown women now, are the pride of my life and both creative in boundless ways. I could take credit for that, but Carolyn is largely responsible, I’m afraid, as I was absent a lot as they were growing up. Carolyn, in her own right, is a talented artist. She uses her garden as her main palette, but her skills as a cook are unsurpassed. I can’t take credit for anything they’ve accomplished as individuals, but as a family I think we rock!

That is all.

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✿This concept comes from a book by James P. Carse entitled Finite and Infinite Games, (The Free Press, 1986). Carse is a great inspiration to me, a true artist. I will review his book and its significance for me in a separate blog post soon.

43 – Plugged in!

Time to reëvaluate! (yes, an umlaut is traditional on the second e in this word). Call me a linguistic traditionalist. So, I’ve posted over forty entries in this blog directly or indirectly on my experience with myeloma. That’s over forty-five thousand words. That’s a lot. Now, the novelty of my daily chemo grind is wearing off and even though I’m thoroughly exhausted most of the time, I’m getting restless. I may force myself to draw this afternoon. There’s some lovely forsythia outside the living room window that I admire every day. Right now it’s vivid yellow, like the daffodils coming up here and there in the yard. I’ll see if I can draw them, if I can steady my hand enough.

With the SARS-2-Cov Novel Corona virus nipping at our heels, it’s tempting to move on to discuss Corvid-19 and leave my myeloma stuff on the back burner. Well, that’s not going to happen. I’m not keen to add anything to the overwhelming internet chatter on the pandemic. You won’t find any tips or suggestions on how to deal with it here. So, I’m going to move on to some extent. I’ll still post entries on my myeloma experience if they’re relevant and new and I will post material on myeloma and Covid-19 if that’s relevant too. For instance, there was a Webinar yesterday organized by Myeloma Canada specifically about myeloma and the pandemic. It didn’t add much to what I already know. In a few minutes the local Myeloma Support group is having a round table by Zoom. We’ll see how that goes. I’ll report back. Reporting back: well, that was interesting. Zoom is unknown territory for most people so it took some time to get the teleconference off the ground. But once launched, we got to see people we had only previously communicated with by email or on the phone. Some interesting conversation around drugs and dosages along with tips on navigating the medical system. Some discussion around what people are doing to stay safe in the face of Covid-19. Physical distancing seems to be the main strategy. I went to the hospital this morning (Monday, March 30th) to get bloodwork done. Chemo patients were supposed to be segregated from the others in the waiting room but somebody didn’t get the memo because that didn’t happen. There was one woman in there who coughed the whole time. At least she was wearing a mask. So was I, for that matter.

This is a great time to be a sociology, not such a great time to have myeloma, but then what would be a great time to have myeloma?

I’ve been re-reading What is Sociology? over the past few days giving me a renewed appreciation of Norbert Elias’ work. His language is different from conventional sociology, particularly functionalist sociology, and it’s a bit of a challenge to work with concepts like ‘figuration’,’ interweaving’, and ‘interdependencies’, language I’m not that familiar with. I get a lot from his work. I have a challenge for you too based on it.

So many of us, following the dominant capitalist morality in our world have a strong commitment to individualism and individuality. We crave to be ‘different’ from everybody else and we downplay our dependencies on others while we extoll the virtues of self-sufficiency. We laugh at people in their late teens and early twenties who still live with mommy and daddy and who obviously haven’t achieved the level of independence expected of them. I used to challenge my students. So, I’d say, “you think you’re self-efficient and independent. Well, think about this: Think about unplugging your home. Think about no more water lines, no electricity coming through the wires you never think about until it’s time to pay the bill. No sewer connection. No internet. No phone. No mommy and daddy wallet. Nothing. Now do you still think you’re self-sufficient? Now, shut down the grocery store to anything not grown or produced locally. I don’t mean just the food, I mean the packaging, the jars, the plastic milk containers. All of these things are produced in factories all over the world. You are connected to every worker in the banana plantations of Ecuador, the battery factories in Mexico, the food processing plants all over the world. You depend on them every day. Do you think about that when you peel a banana or put batteries in your headphones? What if we shut down Home Depot, Canadian Tire, Home Hardware, etc. The tools you buy there: Where do you think they are they made? Mostly China these days, in factories contracted by American corporations looking for cheap labour, and escape from Labour and Safety laws, and taxes. These corporations have exported their pollution to China. Not that that was ever a consideration in their decision-making. I could write a book on globalization and how we tend to misunderstand it based on old ways of thinking about the nature of countries, their sovereignty and their relations with other countries. Now the shit has hit the fan, and the whole globalist agenda is under question. But I don’t want to get into that right now. Instead, I want to challenge you in another way.

So, we tend to see ourselves as ‘substantiates’ (an Elias term), which means we see ourselves as things separate from other things. We contrast ourselves with larger things like ‘the environment’ or ‘society’, both we think of as real. Well, what if you asked yourself: What is it about me that is essential for my survival as an organism? Then, what is ‘outside’ of me that is essential for my survival? To start, let’s think about our biology.

Our survival depends on organismic integrity. That means that our bodies have to hang together. Of course, we don’t often think in those terms. It seems self-evident that our bodies hold themselves together, so to speak, with connective tissue, skin, bone, and various fluids. That said, our bodies soon cease to ‘hang together’ if we don’t incorporate ‘things’ from the outside to ensure this process continues. So, what ‘things’ from the outside of us are critical for our survival? Or put another way, if we didn’t ‘have’ these things, how long would we survive? One ‘thing’ we often take for granted is air. Suffocation is probably the quickest way of killing someone outside of blunt force trauma or other form of violence. No air=death in minutes. Again, passively speaking, the lack of water is probably second on the list of things the absence of which produces death fairly quickly. Probably food after that, although shelter, that is critical protection against extremes in temperature and weather, is also critical.

So, in summary, it’s fair to say that the human organism generally hangs together fairly well in the absence of blunt force trauma, evisceration, and amputations of various sorts. It cannot survive for long, however, without the right environmental conditions, air, water, and food. Nor can it survive without the means of waste evacuation. It’s really quite absurd, then, to think about ‘ourselves’ as independent of the ‘things’ out there that we need for survival. We don’t exist without them. See if you can imagine yourself ‘plugged in’. Imagine tubes entering your mouth for water and food, into your nose for air, attached to your butt for evacuating solids, and a catheter for you know where. The fact is that ‘you’ and ‘I’ extend far beyond the boundaries of our bodies. The way we see ourselves as independent things opposed to other independent things flies in the face of reality. So, yeah, we live in an illusory world.

Of course, the picture is much more complicated than even that. When we are conceived, at that moment, we begin to transform the world around us, into us using the ‘food’ available coming through the placenta and umbilical cord. That process continues after birth at an accelerating rate for many years before it slows down in early adulthood in an arc towards death. That’s where I’m at, on the arc towards death. Entropy rules. It’s no fun, but it rules.

In my next post I address the way we are socially connected over generations, in time, and in space. If Covid-19 is doing anything it’s highlighting our interdependence and mutual interests. Will we finally take our connections seriously?

33 A Sensation Reminiscent of Hunger.

Today is my med day. This morning between bites of granola I threw into my mouth about twenty pills from a shot glass. It turns out a shot glass is the perfect thing for taking a shit load of pills. Now I sit back in my chair, my computer on my lap. Carolyn is sitting on the love seat in the bay window across from me doing a word game thing on her iPad. Beyond her, out the window, I see the trees and shrubs in the front yard, still devoid of leaves, but showing budding signs of renewal.

Last night Carolyn and I watched a couple of episodes of the dark (ish) Star Trek Picard series on Netflix. One of the characters in the series is Rio, the captain on the starship-for-hire that Picard has engaged to fight the Romulans or whatever he’s up to. In the opening scene of the first episode last night Rio is seen reading a book. The book he’s reading, first published in 1920 is called The Tragic Sense of Life by Miguel de Unamuno, a Basque Spanish writer and university don who wrote with pride that he hardly ever left Spain.

I heard about this Picard episode and the book a few days ago and because Rio sums up the book by saying that the book is about dealing with existential angst in the face of death (or something like that) I bought a Kindle copy for less than two bucks but I could have read it for free on the internet archive (oh well). So, I’ve been reading this book and it’s confounding me, not because of its intellectual profundity, but because it’s so weird. Unamuno is dealing with his existential angst alright but his writing is bizarre to say the least. I’ll leave it for another blog post to deal with it and my own existential angst. Still, it’s relevant now because my body is changing so rapidly because of the onslaught of the chemo meds that I find it impossible not to think about it all the time, and to think about where this is all going. I’ve been sick for a long time, mostly because of the myeloma but for other reasons too. What my chemo meds are doing is exacerbating the problems I’ve had for some time, but with a new, perverse twist.

For the moment, I just want to say that I’m pissed, not with anyone or anything in particular, but just generally. Maybe it’s because my experience with the chemo meds doesn’t quite line up with my expectations based on what is in the documentation we receive with the chemo meds. When we start taking chemo meds, there is a very ritualistic thing that happens (rivalling ceremonial status) when we go to the hospital and are given lots of sheets of information on the meds. The information sheets are, in my estimation, designed to include as many warnings about side effects as possible without scaring people so badly they just refuse to take meds at all. That does happen.

The thing is that cancer is such an idiosyncratic set of two hundred or so diseases that one person may get diarrhea from the meds while another person may get constipation from the same meds. Invariably, the information sheets include all the usual suspects: diarrhea, constipation, peripheral neuropathy, hair loss, sterility (cyclophosphamide), headache, dry mouth, weight loss, and loss of appetite. A person may also get lower back pain, swelling of feet or lower legs, painful urination, anemia along with tiredness or weakness, shortness of breath and skin rash or itching. I’m getting most of these except the diarrhea and the lower extremity swelling. Another thing is that I haven’t had a normal feeling of hunger since I’ve been on the meds. Carolyn asks me if I’m hungry. I don’t know how to answer that question. It’s frustrating. This morning, though, I had a sensation reminiscent of hunger. Hence the title of this post. That was okay.

It would be nice to be told early on that you won’t have a normal poo or pee while on the meds and even for some time afterwards, that the itching isn’t just normal itching relieved by a bit of a scratch. No, the itching I’m experiencing is deep, almost impervious to scratching. My skin is changing. There was no warning about that. It’s getting coarser but no less oily. My back has been bugging me for decades. The chemo meds may be making the pain in that area worse, but I don’t know. My feet are always cold and I can hardly feel my soles. Again, that was happening before my diagnosis, so I don’t know if and what’s going on there, but I have my suspicions.

Thirty or more years ago, I was diagnosed with a B12 deficiency. B12 is critical for health and low counts of B12 in the blood can be deadly. I self-injected B12 for a long time then stopped because I didn’t think it was doing me any good. I felt no better injecting it. Then my count dropped to a very critical low. I started injecting again but it may be that the damage was already done. There is a connection between B12 deficiency, pernicious anemia, and multiple myeloma that we’ve been able to find in the scientific literature, but try to get anybody in the oncology community around here interested in that.* There’s no way. Our blood is highly complex as you might imagine so it should be logical to think that any compound that is crucial to our survival and is blood related would elicit curiosity and interest in the oncological and hematological communities. It may be that it is, but my experience is that B12 is not taken at all seriously by oncologists. It seems that oncologists have their well-worn, familiar roads to follow and deviating from those roads, that is, going off-road for a bit of a rip, does not seem to compute for them.** I’m thinking that based on my experience there just may be more to the B12/myeloma connection that first meets the eye and that it may be a fruitful area for more research. It’s probably not a coincidence that the symptoms of pernicious anemia and multiple myeloma are so similar, symptoms that I’ve been experiencing for decades.

  • *To be fair, I haven’t conducted a survey or anything of the sort. My observations come from casual conversations with medical staff.
  • **That’s definitely the message from Mukherjee’s book The Emperor of All Maladies.

31 Interesting Couple of Days

Yes, interesting couple of days. I’m on a dex high right now after taking my week’s worth of chemo meds yesterday. Good time to write. For those of you who have been reading my blog, you’ll know that dex (dexamethasone) gets me stoned like I’m on twenty cups of good medium coffee. I get the shakes with it too. It’s a little difficult to keep my fingers on the right keys on my laptop. Still, it works for me.

Wow, how my life has changed in just a few months since my diagnosis. Again, for those of you who have been following me along over the past few months you’ll know that my diagnosis just confirmed for us that I was pretty sick for a long time, unable to do things I so enjoyed like drawing, printmaking, going out, working on non-profit boards including the board of the Cumberland Museum and Archives. The Museum Board is a great board and I’m hoping to get back to active involvement in a reasonable time, but to be realistic, it probably won’t be for a while yet. I need to figure out lots of things, including how much I can back off my pain meds and still be okay.

Because oncologists deal with organic disease, they don’t deal well with pain, which, as I’ve noted often in my past blog posts, is invisible and difficult to diagnose. I think that if doctors have themselves been touched by pain issues, either themselves or members of their families, they may have a better understanding of what people in pain experience. My orthopaedic surgeon came right out and told me that Western medicine isn’t good with pain.

No wonder so many people turn to alternatives to deal with pain, physical or psychic, even though there is no science behind their use. Simply, put all forms of medicine, effective or not can’t deal with the huge, overwhelming elephant in the room: death. Medicine, by definition, is about healing the body. There is no healing death. Faced with that wall of immovability, we as individuals grasp at straws. Some of us, I daresay many of us not captured by the statistics, turn to non-medical solutions to pain management. The most turned to alternative to modern medicines of all kinds is alcohol. It’s cheap, it’s legally available, and if you don’t push the social and legal boundaries around its use, you’ll be okay. You’ll be able to avoid opprobrium and jail. Of course, there’s a lot of controversy about addiction, its sources and possible solutions to substance abuse, but the reality is that mental illness is a huge part of the equation and underlies much of the ‘problems’ we humans have in dealing with life and its many challenges.

Gabor Maté

I’m with Gabor Maté when he argues that much of mental illness is engendered by early life trauma mixed with underlying facilitating organic, physiological, even cellular level factors. There is no doubt that genetics play a role in determining quality of life as it relates to pain and suffering. Maté argues that no issue is more relevant than early childhood trauma in determining how we deal with pain in later life. I don’t know if Maté’s argument will ever win the day, but if it does, you should be able to walk into your doctor’s office and expect to be asked right off: “Tell me about what it was like for you as a child. Tell me about your mom and dad. How did you get along with them.” I’m so tempted to write up a short(ish) questionnaire to address some of the issues around parent/child relations in early life. Somebody has probably already done it, but I haven’t done enough research to figure it out and besides, I have ideas of my own to test out. In any case, back to my main point in writing this blog post.

Dr. Fehlau

Wednesday at 1PM, Carolyn and I went to the hospital to meet with the staff in the Palliative Symptoms Management Clinic (or something like that). We met with the nurse, Adele (not sure I ever got her family name) and Dr. Barbara Fehlau, Inc. Dr. Fehlau used to work at the clinic where my family doctor is located in Comox. Now she works full time in palliative care and pain management using whatever techniques she finds useful which she proudly notes she found travelling all over the world. She didn’t say so specifically, but she alluded to the fact that modern Western medicine is pretty good at using drugs to deal with pain issues but lousy at any other treatment protocols. She has a pain clinic where she uses a range of techniques to alleviate pain including acupuncture. She’s a very strong proponent of meditation and says she meditates for forty minutes in the early morning and another forty minutes before bedtime. I used to meditate every day and for some unfathomable reason stopped. I have opinions about meditation and other ‘mindfulness’ activities but they will have to wait to be expressed in another post. In any case, Dr. Fehlau is calm, very controlled, and I am cautiously optimistic. She has a personal history of dealing with pain and told us that she was about to get knee replacement surgery. I’ve been to the pain clinic in Nanaimo and that worked to some extent but I’m still dogged by pain. The myeloma isn’t helping of course.

Okay, so now what? Well, Dr. Fehlau told me to call her clinic and get in to see her there so she could do some interventions. Then she talked about end of life issues and asked me if I was aware of the services offered in the Valley around end of life palliative care, MAID, etcetera. I said that I did know some things but there’s always more that can be learned. I’ll get on that.

Speaking of souls, do I have a belief system? She asked me about my belief system and if I had beliefs that some people find comforting as death approaches like a fast train in the dark. I said ‘physics’, that’s my belief system if I can even say I have any kind of belief system. I was never big on ‘soul’ music. Oh, I think that we humans are extremely creative in coming up with ways of finding some sense in death and the creation of the ‘soul’ is one of those. Whatever rocks your boat, as far as I’m concerned. Maybe it’s time I explain more about my philosophy of life, but it will have to wait too, getting in line with my ideas about meditation and other ‘mindfulness’ strategies.

So, now I’m back in my bed, staring at the ceiling with the light filtering through the blinds at the head of our bed. Dr. Fehlau, knows that I’m on the death train because of the myeloma I have and she is clear that my future can be counted now in months rather than years. Pain is one thing. Strategies for making peace with life when I have very little left is another thing. And what about Carolyn, Marika and Arianne. Carolyn is the love of my life and my daughters are very near and dear to me. I need them to be involved in the process of my dying but it’s not easy. Carolyn, being the person that she is, has been thinking a lot about what it means for me to die at home. She’ll need some help, but she can speak for herself around these issues. Help is available for respite and home support. Carolyn has to think about life without me too. She’s five years younger than me so that’s an advantage right there. With some help she may even be able to continue to live where we do now if that’s what she wants. Unfortunately it’s impossible to make too many plans too far ahead, but there are preparations that, made now, will help a lot when the time comes.

I may be premature in thinking about these things, but I really can’t help myself. I need to know. Do I want to consider Medical Aid In Dying? You bet. If if comes to that. One thing though: I am now connected to some of the end of life services in the Valley through Community Home Care. That’s a new one for me. Man, there’s so much to learn about dying!

Addendum:

This post is already long enough but I can’t help giving you a taste of how our daily conversations go these days. They would be completely incomprehensible to people not ‘informed’. So here is a typical early morning talk. Me and Carolyn.

Carolyn: How did you sleep?

Me: Well, last night Ben rocked me to sleep while looking after the issues around my injection site. I slept from 11:30 until 6:30 straight.

Carolyn: That’s great! So you talked about changing your hydro routine. What do you want to do about that?

Me: I’m thinking of taking two breakthroughs this morning then another two around mid-afternoon while I wait for Dr. Fehlau’s 4.5 prescription to come in. That should keep me going until eight when I can take a six slow-release. The dex is kicking in. Sleep tonight could be a challenge. The cyclo will slam me down though, counterbalancing the dex. The Duc has to do its work too. I’ll see about going poo earlier in the evening so that I don’t have to get up during the night. Maybe Ben can come help me sleep too. We’ll see.

[Carolyn is off this morning to pick up a prescription for me and to take care of some Museum business. We talk about the Museum a lot too and about other things. Come to think of it, I think some of those conversations would also be incomprehensible to the ‘uninformed.’]

See ya later.