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.

42 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.

41 – 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?

Beware of Dr. Vendedor de Aceite de Serpiente.

On my very first post in this series on my experience with cancer, the last paragraph reads:

Please don’t suggest any treatments or diets or whatever. I won’t be going to Mexico for any heroic treatments. (If and when I feel better we may go to lie on a beach though.) I’m not desperate. I won’t be buying a juicer either and I’ll continue to eat the great, wholesome mostly unprocessed food that I currently eat but my body will follow, as it must, the second law of thermodynamics. I’m okay with that.

I still feel that way. I’ve clearly decided to go the chemotherapy route so I won’t, in desperation, try on some homeopathic ‘treatment’ or ‘cure’ for the myeloma that is my curse for the rest of my life. Neither will I do anything to boost my immune system. It’s my immune system that is partly responsible for spreading my bone marrow cancer to distal regions of my body by facilitating the movement of the myeloma protein in my blood via macrophages (if I read that right). No. My immune system is fine for dealing with outside sources of infection, but it can’t do anything about preventing internal insurrection by oncogenes and the like.

Lately, I’ve had a couple of other bloggers read my posts, bloggers with agenda. Barbara Gannon has a blog called Cancer is not A Death Sentence and another is by Brian Shelley and it’s called CANCER WARRIORS. I believe both Gannon and Shelley are sincere and well-meaning. Not only that, they display a passionate belief in what they’re doing. Gannon has found alternative dietary and medicinal ways of dealing with cancer. Shelley found God. The battle metaphor is the same for both bloggers. If you’ve been following my blog you’ll know that I am not likely to be convinced by either approach to dealing with my cancer. For one, we are all individuals with very different bodies, different genetic makeups, at different ages, with different genders, and different underlying physiological and anatomical dynamics. Cancer, although it is basically pathological mitosis, is expressed differently in each of us. What works for you in response to any given cancer at whatever stage it’s at may not work for me. Some people argue that cancer is cancer and it can be beaten no matter what. I don’t subscribe to that perspective. Some people may be misdiagnosed so it’s no big surprise when their situation improves. It was probably nothing to start with. Some cancers in certain people may go into spontaneous remission. Cancer and its various treatments are highly complex and I’ll go with science in dealing with it as much as I can. Anecdotal evidence just doesn’t cut it for me.

That said, conventional Western research science, medicine, and pharmacology are not perfect. Scientists, medical doctors, and pharmacologists are human and have human ambitions, needs, and varying moral standards. Some even cheat. Still, I think the scientific research protocols are the best way of finding out what’s going on in the world. All claims of miracle cures for cancer that I’ve run across are based on anecdotal evidence: The “I beat cancer. You can too.” type of thing. I’m not saying these claims aren’t real, only that they can’t be generalized and applied to everyone who has cancer. One problem I find difficult to deal with is the absence of ongoing scrutiny of the claims of miracle cures. I had a friend and colleague who tried everything to survive his cancer a few years ago, including juicing and trips to Mexico, but nothing worked and he died. But, again, that’s anecdotal evidence pertaining to one case only.

Of course there are huge ethical issues when doing double-blind scientific research on the effectiveness of treatment protocols. Siddhartha Mukherjee in his book The Emperor of all Maladies deals with many of the ethical issue in oncology. Recruiting people with cancer for a clinical trial, then assigning half to a treatment group and half to a placebo group is ethically charged. The placebo group is definitely at a disadvantage if the treatment works. The question then is when to switch them into treatment while still maintaining the integrity of the research project.

Nutritional studies are notoriously difficult to conduct in any kind of scientific way. This website addresses that issue and notes that some nutritional studies have been very successful, like the one finding that sailors died of scurvy because of vitamin C deficiency. But, overall, nutritional studies are notoriously difficult to carry out and are almost impossible to conduct using the standard double-blind protocol. The website ends with a statement garnered from a meeting of several nutrition researchers who find that a balanced diet is the best diet. They also note that: “Anyone who tells you it’s more complicated than that — that particular foods like kale or gluten are killing people — probably isn’t speaking from science, because, as you can see now, that science would actually be near impossible to conduct.” More on nutrition below.

Naturopathic cures and treatments.

I have no problem with naturopathy for some kinds of issues and treatments, but I have been highly sceptical of some of their diagnostic protocols, especially things like vega testing. This website debunks all kinds of naturopathic and other diagnostic protocols. The website Science Based Medicine is always a good place to check out whether or not a claim for this or that treatment is effective from a scientific perspective. Noting that here may betray my bias for science, but I have no issues with that. However, I also acknowledge that science based medicine is now being challenged more and more by what’s called evidence-based science. There are huge issues with evidence-based research, not the least of which a lot of it is funded by industry with serious conflict of interest consequences.

My interest is mainly in cancer research and treatments. This article from the Fred Hutch Cancer Research Centre provides a fair analysis of how oncologists can address patients who are reluctant to undergo chemotherapy because of the side effects. It argues that if a patient wants to go an alternative route they should still maintain contact with an oncologist who can monitor their ‘progress’.

This website called Nature Works Best highlights the research and findings of Dr. Colleen Huber, a naturopath who’s clinic offers alternative cancer treatments. I read her article detailing her work with 379 individuals with cancer. She claims a very high rate of success from 92% for the low-hanging fruit (as I call it) and as low as 29% for patients in advanced stages of certain types of cancer. She seems to have the most success with breast cancer patients who have already had surgery. It’s hard, then, to figure out where to ascribe responsibility for remission. Thirty-two of her patients died after following her protocols. She claims that many of the other ‘failures’ (deaths) are due to patients not following her advice, especially to not eat sugar, which she claims feeds cancer cells. Her table looking at each of the 379 patients is telling. I read it very carefully, and frankly I can’t see how she can boast a 92% success rate. One of the problems is that there are twenty or so varieties of breast cancer. She doesn’t tell us which or these varieties she’s actually treating. And ‘treatment’ like I said is often post-surgery.

She has had four myeloma patients and one MGUS (describing a sort-of pre-myeloma condition. She claims that one of those patients travelled a lot and eventually died of pneumonia. Another died after leaving treatment against her best advice. A third she reported in remission but now having problems (“R, then recent elevated blood labs”). This patient reported extreme fatigue with no change due to treatment. The fourth, she reported is in apparent remission (“AR Imp quickly; could not afford to continue treatment. Then recurrence; then stem cell tx. R”) So, the stem cell transplant seems to have done the trick. I can’t see how her treatments helped at all. Myeloma is incurable by all reports so it’s disingenuous to not be clear on that point in her documentation. Her table doesn’t mention the age of the patient. That’s a critical piece of information, in my mind.

Snake oil salespeople and over-the-top woo.

You could always get a coffee enema. There are clinics nearby. Read all about it! Then you can read what Science Based Medicine has to say about it. Or you can try medical marijuana as a treatment. Here’s what the American National Cancer Institute has to say about that. It suggests that there is no evidence that cannabis or any cannabinoids can treat cancer. It does note, however, that THC may be useful for advanced cancer patients in dealing with pain and issues around appetite. Alternatively, you could try an alkaline diet. See what Robert David Grimes has to say about this in a 2017 article in The Guardian. Grimes has a lot to say too about other alternative therapies too. Check out his article if you’re interested. You can always try juicing, but even the alternative of alternatives, the Oasis of Hope hospital in Tijuana, Mexico, doesn’t advocate juicing carrots: too high in sugar. To be clear, the Oasis of Hope does use chemotherapy as a treatment, but it’s much better known for alternative therapies.

What I’m not arguing here.

I’m not suggesting here that a proper diet, not smoking, drinking in moderation, etcetera are not important. They are. However, nutritional or dietary strategies for cancer treatment are largely unfounded.

I know that there are herbalists who have a strong commitment to assisting us in our drive for healthy living and I respect that. But when it comes to cancer, the Cancer Council of Victoria in Australia has assessed the contribution of herbs in cancer treatment and says:

Herbal medicines are often used to help with the side effects of conventional cancer treatments, such as lowering fatigue and improving wellbeing. Evidence shows they should be used in addition to conventional therapies, rather than as an alternative. AND

Although herbs are natural, they are not always safe. Taking the wrong dose or wrong combination or using the wrong part of the plant may cause side effects or be poisonous (toxic). Also, herbs used with chemotherapy, radiation therapy and hormone therapy can cause harmful interactions. All herbs should be prescribed by a qualified practitioner.

I was cautioned not to drink green tea as it counteracts the effects of bortezomib, one of the meds I’m on. There are other contraindications too. And just because indigenous people have used some plants to treat all kinds of ills, it’s probably not a good idea for us to apply indigenous strategies willy-nilly. For example, cedar tea although very high in Vitamin C can be very toxic but people are drinking it and I expect they are not always in full knowledge of its effects on the short or long term. Carolyn and I have used products from Harmonic Arts and from a local herbalist to good effect but not specifically for treating my myeloma. That said, there is ongoing promising research. There is evidence that curcumin, a compound found in turmeric, can act as a proteasome regulator, and could work with drugs like bortezomib to suppress the growth of cancer cells in some types of cancer. A report in MyelomaCrowd notes that curcumin needs to be modified to stay in the body longer if it is to be effective against cancer cell proliferation.

I’m all for caution when it comes to my cancer treatment. I’m not happy being on chemotherapy but I don’t see any alternatives out there that are trustworthy or based on more than anecdotal evidence. I think I’ll stay the course. That said, I will continue to eat well, have the odd beer, rest but also get some exercise (as much as my condition allows me to).

Stay safe out there!

Two Days in my Diary

8:00 AM Thursday, March 19th.

On Wednesday we went to the hospital to see my local oncology GP. We reviewed my lab results and my progress to date and he was very positive about how things are going. It looks like more chemo for me until at least September, then off of them for three months after which I get bloodwork done again to see how things are going. If everything is okay we carry on for another three months. If the myeloma is again active, they’ll put me on another course of chemotherapy. He said that we should consider my disease more like a chronic disease, diabetes say, rather than as a virulent, deadly one. So, that’s all good, but I still have lots of chemotherapy ahead of me and that’s no cake walk.

In this post, I want to give you a blow-by-blow idea of what happens to me after I take my chemo meds on Thursday and Friday. I would love to hear from any of you who have had chemo so as to compare our experiences.

I have just made it so that anyone can comment on my posts. You don’t have to be a registered WordPress user to comment! Yay! Give it a try please!

Today is a good day so far. That will change in a while when I get my chemo meds. Oh, I have some joint pain and fatigue, but that’s my new normal anyway.

11:15 AM

Off to the hospital to get my chemo meds for the next four weeks along with a bortezomib shot.

1:20 PM

This time they wouldn’t let Carolyn come with me to the Cancer Clinic so she waited for me in the car. That’s because she had a cold and they’re rightfully paranoid about Covid-19. We drove home from the hospital carrying my load of pills to take for the next four weeks. I take 13 cyclophosphamide and 5 dexamethasone once a week on Thursdays. We had a bit of lunch a while ago and I’m starting to feel the effects of the meds, but not intensely yet. Tingling body is always where it starts. Today I decided to sleep off the afternoon hoping to cut off some of the worse effects of the meds.

4:30 PM

I’m actually feeling pretty good after sleeping for most of the afternoon. I’m lightheaded, that’s for sure, more than yesterday, so it’s started. The dexamethasone is starting to take effect. I’m feeling tingly all over. It’s still too early to assess how dex will affect me today. The dex effect has changed over the past few weeks. My body seems to be tolerating it better. I’m not getting the crazy twenty coffee high I was getting earlier during the first two cycles of treatment. My stomach is unsettled as it has been for the duration of my treatments. It’s a very odd sensation. Urination is still a problem although not as severe as early on in my treatments, so we’re thinking that the antibiotic might have done something, but we’re not sure. I checked to numbers from my last blood tests and my ferritin levels have dropped from over a thousand to now under six hundred. That’s great news because it does indicate that any inflammation I have had is decreasing. That said, my Lambda Free Light Chains (you have them too) are increasing and I’m not crazy about that. We’ll see what my next lab tests show. If they go up some more, I’ll be really pissed.

8:00 PM

Dex is starting to do its thing. ‘Sleep’ will be interesting tonight. I just took my usual bunch of pills but I’m taking two Benadryl tablets to counteract the usual itching and swelling around my bortezomib injection site. I’m also taking a Dulcolax tablet to counteract the constipation that comes with hydromorphone. That seems to be working. The burping has started but isn’t severe yet. That will come tomorrow. I’ll save more entries here until tomorrow. I’ll be in bed soon in any case.

8:00 AM Friday March 20th

So, last night was a dex sleep meaning that it’s a sort of sleep or at least a state akin to sleep. It’s hard to explain. I feel that I haven’t slept at all. Looking at the clock every fifteen minutes or so seems to confirm that but I may be dreaming all of that. I don’t know. I think the Benadryl is helping me counteract the dex, but I can’t be sure. I’m wide awake this morning having got up at 6:45 after Princess (the cat) came to me screaming for food. I ignored her, but it was too late. No point in staying in bed. I’m having very interesting experiences with pain lately too and this morning is no exception. I have pain spiking here and there but nothing constant. It usually comes when I move so I just sit still a lot! I know I have to get up and move around, and I do, but I then pay for it later. Last night I had no issues with my peripheral neuropathy (extremity pain and numbing) which is unusual. Usually peripheral neuropathy keeps me awake or tossing and turning. I’ll do more stretching today to see if that helps with that in the coming week. I’ve been doing a fair bit of stretching for my neck and back pain and that seems to help my peripheral neuropathy. Burping has resumed. Fuzzy head…not too severe yet, blunted by the dex. I find it fascinating to observe what’s happening to my body as I go through cycle after cycle of chemo. The effects change every time, sometimes drastically, sometimes almost imperceptibly. The interactions between the various meds I’m taking make it difficult to trace drug to effect. I’m trying to relax as much as I can. Stress doesn’t help. I think I’m doing okay on that front.

10:30 AM

The dex is starting to really kick in now. Elevated pulse rate and feeling very lightheaded. Overall, though, because I know what to expect I’m not getting stressed out. I feel it’s so important for people in chemo to very carefully track the effects. It’s so important to read the information sheets that come with the various drugs we take. In the case of my urinary issues, I called my GP with what are classic urinary tract infections (UTI) symptoms but only after Carolyn read the information sheets urging us to call in if we have signs of UTIs. We have to keep on top of it because I can’t afford to get an infection of any kind. Now I’m getting the shakes too. Par for the course. Time for tea.

12:25 PM

Well, the dex has kicked in with a vengeance. My cheeks are flushed, I’m hyper yet exhausted, unsteady on my feet, but we’re going to have lunch up by our pond. Yes! I can still write, but who knows about later today or tomorrow. Then, I may be good only for watching YouTube videos about people rebuilding their old sailboats, or doing woodwork, sometimes both. It’s all very exciting. I haven’t seen any videos yet on watching paint dry, but it came close on a video about somebody applying bottom paint to their sailboat a couple of hours before it was to go back in the water after being on dry land for weeks.

8:00 PM

Dex is still with me but now I’m feeling really exhausted so I may sleep better tonight. I generally sleep quite well. Dex nights (Thursday nights) are exceptional. I’ll be taking my meds now: Hydromorphone, Benadryl, and Dulcolax. It still burns when I pee and I have to pee often. My eyes are burning but that’s probably as much an effect of age as it is of the chemo. I’ve got the shakes still, probably until well into tomorrow. Pain is manageable. Exhaustion inevitable. I’ll go to bed in an hour or so, do a bit of reading then sleep (I hope). Goddamn burping! So annoying.

AND please comment! Especially those of you who have had chemo treatments in the past. You can do so now without being a WordPress user.

To live and to die.

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

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

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

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

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

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

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

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

When Death Comes Calling

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

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

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

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

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

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

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

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

Fuck cancer!

Fuck Cancer mugs

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

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

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

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

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

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

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

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

Looking in the Mirror.

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

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

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

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

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

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

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

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

Welcome to CancerLand* AND Happy Birthday to me!

Well, another festive season is in the books. This one was no different than many in the past with family, food, and drink (in moderation, of course) along with the requisite tree and lights. This year, however, the family arrived on the weekend prior to Christmas and stayed much longer than usual. That’s because our daughters, their husbands and children (one of our daughters carries the full responsibility for the production of our three grandchildren) wanted to stick around to spend some time with us. I love that they wanted to be with their sick old dad. They are such a delight to have around and I was very sad to see them go back home to Vancouver.

Wow, has my life ever changed over the past few months. I was diagnosed with multiple myeloma in early October, 2019, and since then I’ve been brought slowly yet inexorably into CancerLand. There’s no doubt that I had multiple myeloma long before the official diagnosis. The symptoms were clear in hindsight. It’s probably been well over five years. But it’s been only since November, really, that I’ve gotten my passport to CancerLand. I’m fully a resident now, brought into the institutional fold. That means frequent visits to the lab and to the hospital with calls to oncology nurses interspersed. I mean, I have a diagnosis! I’m legit! I have my badge and my pass to the ER.ª  I’m not just another whiny patient going to see my doctor to complain about being tired. I’m a CANCER PATIENT!

Speaking of being a cancer patient, I’ve now completed my first course of chemotherapy. It lasted about a month. My stomach is bruised from subcutaneous injections of bortozemib and my brain is bruised by weekly oral doses of cyclophosphamide and dexamethasone as well as zoledronic acid infusions once a month. I’m subject to a true cocktail of poison. Oh well. I used to drink more scotch than was probably good for me on occasion and people sometimes refer to alcohol as poison so, there ya go. Poison for poison.

Now we wait. We wait for the results of lab tests on Monday and what the oncologist will tell us on Wednesday based on those results. Will I be continuing with this same cocktail? Are the numbers going in the right direction? Can I realistically expect remission in the next few months? What? What? What?

Tomorrow is my seventy-third birthday. That means I start working on my seventy-fourth year tomorrow. For a guy who thought at twenty years old that he’d never live to be twenty-six, I’ve done pretty well. I can’t complain about my life. I must say, though, that there are a few things I might do differently if I had to do them over again, but I don’t dwell on those things anymore. I don’t have time. I didn’t have time when I was twenty-six either, but I didn’t know that back then. Time has passed so quickly, it’s frightening. If I had been able to really understand when I was twenty years old how in the blink of an eye I would be seventy-three I might have taken some things more seriously and dismissed other things as unimportant. But that’s the way it goes. There may be some twenty year olds out there who understand how fleeting life is, but I haven’t met them. Trying to convince them of that fact is not going to be very fruitful so meh…

I haven’t put together a New Year’s resolution. Should I? Maybe I can resolve to stay alive this year. Is that good enough? I’ve realized that in my state of being, committing to a long-term project to save the world is probably overly optimistic, but a resolution to stay alive in 2020 is reasonable, I think. I just might be able to see it through too. Wish me luck!

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*”Welcome to Cancerland.” (from “Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America” by Barbara Ehrenreich). The title of this post is taken from this book. Ehrenreich uses this title as an introduction to the way she became medicalized after having been diagnosed with breast cancer. Start reading it for free: http://a.co/3h6SgyT

ª I do have a pass to the ER. I have a letter of introduction to the ER staff from the BC Cancer Centre telling them that if I show up to the ER they have a number of tests to do stat! If my temperature goes over 38˚ C, I need to get myself to the hospital ER for a possible antibiotic infusion. An elevated temperature indicates an infection of some kind, something I don’t need right now.