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?

Dying Well – A Reprinted Article by Dorion Rolston.

I don’t often do this, but I find this article I’ve just read from Aeon quite compelling so I decided to reprint it here for you. You should check out Aeon. It’s a great source for thoughtful reading.

https://aeon.co/ideas/dont-take-life-so-seriously-montaignes-lessons-on-the-inner-life

My dad was an unhappy man. He used to complain about the slightest thing being out of place – a pen, the honeypot, his special knife with the fattened grip. By the time his health really started failing, his arthritis so bad he could no longer get out of bed, his condition became all he complained about. ‘Dorian,’ he said, one morning over breakfast, the grapefruit cut up indeed with his special knife, ‘I hate myself.’ He was 86 years old and, I felt, nearing the end of life, so I took it upon myself to help him die as well as he could, a kind of Ars moriendi for the old man. ‘But Dad,’ I said, for the first time in our 32-year relationship. ‘I love you.’ When that didn’t help, I sent him some Montaigne.

Michel Eyquem de Montaigne (1533-92) lived a good, long life for a man in early modern France. By all accounts, it was a happy one, at least if his Essais (1570-92) – rangy discourses on varied subjects from thumbs to cannibals to the nature of ‘experience’ itself – are anything to go by. His writings, autobiographical in nature but highly argumentative, have survived him as somewhat radical (for the time) self-experiments. ‘Thus, reader, I am myself the matter of my book,’ he opens, with a letter of warning about the 1,000-plus pages that follow: ‘you would be unreasonable to spend your leisure on so frivolous and vain a subject.’ Since I took my dad to be also involved in so vain and frivolous a subject – namely, himself (right down to the urinary tract diagrams he drew for me on paper napkins at the dinner table) – I figured they’d have a lot in common.

The passage I chose to hand him, from the essay ‘Of Solitude’, concerned Montaigne’s secret to happiness. It says, simply: these are the things we normally think will bring happiness; they’re wrong, here’s mine. ‘We should have wife, children, goods, and above all health, if we can,’ he writes; ‘but we must not bind ourselves to them so strongly that our happiness depends on them.’ In what’s become something of a trademark for his life philosophy he adds: ‘We must reserve a back shop all our own.’ A back shop – or in the original French, arriere-boutique. Of course, this is metaphor. Of course, my dad took it literally.

What is there left for us to learn from Montaigne on the subject of happiness? For one, that ‘back shop’ doesn’t mean the room behind your place of work. Increasingly confined to his bed, in the crummy 17th-floor apartment that doubled as his home office, my dad read these lines with an eyebrow raised. Granted, Montaigne himself penned them from a castle-tower eyrie, overlooking the vast estate of his château. He didn’t mean for us to take refuge there – this privileged perch was just where he did his writing (as I do mine now in the storage unit behind my house, a heavy wooden partition setting me off from the boxes and mess). No, the physical ‘back shop’ is just a writer’s den, and this misunderstanding has caused critics to huff about Montaigne’s solipsism, as if what he really said was: Go be alone and make great art. This does not lead to happiness, I assure you.

When my dad emailed back, misreading Montaigne in just this way, he nonetheless conceded that the passage I’d sent him was ‘thoughtful’. But not, he added ‘surprising’, as ‘Many writers nowadays speak of personal space, meditation, being alone at times, and so on.’ He went on to say how there was a difference between voluntary and involuntary solitude. ‘Many of us, as we age, become too much involved in that space.’ It’s not just the confinement but the loss of all able-bodied experience that they’re missing out on, and my dad (as ever) listed them: going to the market, dancing, seeing family and friends – precisely the things that Montaigne cautioned his readers not to count on for happiness.

In her book How to Live: Or a Life of Montaigne in One Question and Twenty Attempts at an Answer (2010), Sarah Bakewell acknowledges the temptation to read Montaigne as an advocate for a type of isolation (chosen or not), but she qualifies this, saying: ‘He is not writing about a selfish, introverted withdrawal from family life, so much as about the need to protect yourself from the pain that would come if you lost that family.’ It was after the death of his closest friend and confidante, Étienne de La Boétie, and then later of his father, that Montaigne retired to his private library. In Donald Frame’s translation, this period is marked by Montaigne’s fall ‘into a melancholic depression, to combat which he begins to write the first of his Essays’. The contemporary US writer and essayist Phillip Lopate ventures that, for Montaigne, ‘the reader took the place of La Boétie’. But how, exactly, did Montaigne’s attempts (the literal translation of essai) assuage grief?

Certainly, an unnamed interlocutor haunts the text, the kind we usually chalk up to self-talk. Talking to people who won’t talk back (or who can’t because they’re no longer with us) is a form of conversational intimacy we might read as an extension of Montaigne’s general affability. In life, Montaigne was known about town as a raconteur with an open-door policy for guests. Even Bakewell, who sums up his back shop as a form of ‘Stoic detachment’, notes that in another lasting dictum Montaigne cried: ‘Be convivial: live with others.’ If Montaigne’s back shop is meant to mend a broken heart, then it is not by avoiding future pain, but by coming into a different relation with it.

Montaigne was well aware that the promise of getting away from it all was a fool’s errand since, wherever you go, you take yourself with you: ‘It is not enough to have gotten away from the crowd,’ he writes, since ‘we must get away from the gregarious instincts that are inside us.’ Instead, to quote Albius Tibullus, one of the Latin poets he grew up with, ‘be to thyself a throng’. This is where I hoped my dad might take note: shut in with no one but himself for company, there might still be a chance for great companionship. ‘We have a soul that can be turned upon itself,’ writes Montaigne, ‘it has the means to attack and the means to defend, the means to receive and the means to give.’ Sadly, my dad didn’t see his own soul this way and, after falling into a depression of his own, he took his own life.

I wonder now if Montaigne’s back shop was less the writer’s saving grace, lifting him from the depths of despair, but not the act of writing from within it? ‘Here our ordinary conversation must be between us and ourselves,’ he writes – and I take it he means that the quality of the inner dialogue will determine the quality of the life.

Montaigne’s mental chatter had a buoyancy to it, as he bounced from one subject to the next, going with the current. What I couldn’t convey to my dad, evidently, was this lightness of attention, distilled in that most famous of Montaignisms: ‘Que sais-je?’ (What do I know?) In his celebratory portrait of Montaigne, Ralph Waldo Emerson in 1837 comments that: ‘His writing has no enthusiasms, no aspiration; contented, self-respecting, and keeping the middle of the road.’ Not taking life quite so seriously – the pursuit of happiness notwithstanding – might then be Montaigne’s key to dying well. After all, there might be no surer inner peace in one’s final days than not needing it so badly.

Dorian Rolston

This article was originally published at Aeon and has been republished under Creative Commons.

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: Saturday morning addendum.

6:15 AM Saturday March 21st.

I probably should have included Saturday in my original post from yesterday, because it’s also a down day due to my chemotherapy treatments. I had another dex night last night. I got my usual acid reflux but it came much later than usual, around midnight, and lasted until around 5 AM. My tinnitus is about as bad as it gets right now. I slept, I really did, for a couple of hours between 10:30 and 12:30, then I got up to pee. I sort of slept again until 2 PM but that was it. I woke up startled by a very odd dream. So I listened to some music and read some Fernand Braudel about Medieval Europe while I tried to process this weird dream I had just had.

I woke up at 2 AM in a sweat. That’s not unusual either in the first three days after taking my meds, but this time, like I just said, I woke up from a very strange dream. I wouldn’t say it was a nightmare; it was much more matter of fact than that and it was very vivid.

So, in my dream I invented a portable guillotine. It was portable with a blade a metre long and 30 centimetres thick and sprung like a chop saw. It looked more like the cutting end of a pair of garden sheers than a traditional guillotine but it worked like a guillotine. I invented it to cut up yard waste like sword fern fronds and twigs, that sort of thing. I think it’s because yesterday Carolyn worked in the yard doing clean up and she cut up a lot of sword ferns to the ground. I guess I invented this ‘machine’ to chop up these fronds to make them more compostable rather than take them to the dump in the trailer. In any case, it worked well, but then someone stole it from in front of my workshop one night. I was pissed off but resigned to just building another one. Then the neighbours started reporting that dogs and cats in the area were turning up decapitated. I figured whoever had stolen my guillotine could easily be doing this. I was mortified. Then I wondered if we’d start finding people decapitated, maybe up the logging road. Now I felt really shitty. All of that mayhem was my fault for inventing such a dangerous tool. Then I woke up.

I’ve been wracking my brain to try to wring some significance out of this dream but I can’t seem to figure it out. I invented a dangerous tool for a good cause but then found it used for very destructive purposes by person or persons unknown. What can I make of that?

In any case, today will be strange. I’ll probably have to sleep much of the afternoon after I completely come down from my dex high and am left to deal with the fallout from the cyclophosphamide and bortezomib. For my headache I’ll take a couple of Tylenol. Strange, but my peripheral neuropathy is attenuated at the moment. I wonder how long that will last. The burping is driving me nuts!

By the way, I came up with my epitaph. It goes like this:

Here lies a man who did a lot of bad things in his life.

Here lies a man who did a lot of good things in his life.

At the end he hoped it all balanced out and he would

Neither go to heaven nor to hell. He, he, he.


Have a nice day.

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.

While Covid-19 has me bottled up…

Covid-19 has the whole world in an anxiety attack. The appearance of this special strain of Coronavirus is a direct but obviously unintended consequence of globalization. I spoke with Marika and David this morning and we collectively concluded that the appearance of Covid-19 in particular is pretty much due to the rapid expansion of global air travel some forty years ago created partly by the needs of globalization. The shipping container was a major factor in globalization as was the internet, but air travel brought warm human and humid bodies from one end of the planet to the other ripe for the spread of this kind of virus. Wow!

What a world transforming situation we are in at the moment. I don’t think it will have a long term effect on global capitalist production because it would cost hundreds of billions of dollars to re-tool ‘Western’ countries that have for some time now created a commodity-production system based on a complex of independent, unconnected factories producing individual parts for products that are then assembled in a factory designed to do just that. Wuhan, in China is a place where thousand of contractors and factories work for American and Western corporations in general making bits and pieces of everything to then be assembled in factories there or here for our consumption as hardware such as drills, heaters, washing machines, television sets, baby cribs, etcetera, as well as clothes, blankets, and sundry other wearables and that sort of thing. Of course, China isn’t the only place where this happens. Name a country in South Asia or South East Asia and the same thing is happening there. Viet Nam actually specializes in nails and fasteners for the construction industry, or to put it differently, Western corporations have chosen Viet Nam for this role. Bangladesh does clothes, so does Sri Lanka. But they all dabble in a range of products depending on the deals they can arrange with corporations who crave the absence of taxes, low wages and the dearth of health and safety regulations in the export processing zones set up specifically for this purpose in these countries.

As far as I’m concerned, Covid-19 has just made it so that I’m even more isolated than I was before. I’m at the pinnacle of vulnerability. I’m over sixty-five, I’m immuno compromised, I have an underlying illness and I’m fighting off some kind of bacterial infection at the moment that the docs are still trying to identify. If I get Covid-19, my chances of survival are slim to none. Well, something’s going to kill me. I’d like to wait a bit though to find out what that will be and I hope it’s not this virus.

I have a lot on my mind at the moment. I mean, what else have I got to do with my time but sit here and think? The reality of my own death is always close to mind and is stimulated constantly by programs like the recent one on the CBC White Coat Black Art program that deals with end of life care and how we as a society deal with it, or more precisely, don’t deal with it. Check it out here.

Most of you are way too young to have seen the movie Fantastic Voyage when it first came out in 1966, but this movie with Raquel Welch and Stephen Boyd was an inspiration for a generation of special effects techs to come. So, get this: a famous scientist is sick. He has a problem with his brain. A group of intrepid (they’re always intrepid) colleagues of his and some other brave adventurers get themselves shrunk in a special ‘ship’ that then is injected into the bloodstream of said sick doctor. Mayhem ensues of course as well as the necessary redemption. The trailer says it all.

The movie is hugely fantastical, but intriguing too. I imagine a little ship in my own veins going into my bone marrow to see what all the fuss is about and maybe do battle with the evil forces that are invading my body intent on killing me. It’s all fun to think about. The movie is a hoot. Thinking about what’s going on in my bone marrow, not so much.

I’m also thinking about life and death in general, following the last three blog posts I put out there for your reading pleasure. Serendipitously, Maria Popova, the immensely creative force behind the website ‘brain pickings‘ put out a piece on the work of John Muir (1838-1914). It’s well worth having a read through. It pretty much expresses in highly poetic prose what I wish I had written about the way I see the universe and our place in it. Popova quotes Muir:

One is constantly reminded of the infinite lavishness and fertility of Nature — inexhaustible abundance amid what seems enormous waste. And yet when we look into any of her operations that lie within reach of our minds, we learn that no particle of her material is wasted or worn out. It is eternally flowing from use to use, beauty to yet higher beauty; and we soon cease to lament waste and death, and rather rejoice and exult in the imperishable, unspendable wealth of the universe, and faithfully watch and wait the reappearance of everything that melts and fades and dies about us, feeling sure that its next appearance will be better and more beautiful than the last.

It’s only the last line I have any issue with because I don’t think there is any guarantee that the new will be better and more beautiful than what came before. But that’s really a quibble. The continuity of the biological world, and of the social world, make them seem eternal, immortal. No wonder we tend to deify them. For the BaMbuti of the Ituri forest (as reported by Colin Turnbull in the book The Forest People) before colonialism completely annihilated them, the forest was their mother. They didn’t deify the forest but they recognized that life emanated from her every pore. For other cultures, those living under the threat of imminent disaster, deification was common, something that Weber recognized in his Sociology of Religion a hundred years ago as did many others before him and since then.

Well. that’s all I can squeeze out of this poor brain of mine for the moment. Enjoy your social distance and get out into the sunshine.

Me, my Body and I: Part 3

It’s time to wrap up this diatribe. Like I said at the end of my second post in this series, I’ve strayed a long way from the usual content of this blog. After this post I have to reconsider my work here. I’m getting into the long stretch of road in my chemotherapy treatments. I’m getting tired and you must be getting tired of reading this stuff. The end of this part of my road is at least six months away. Things are looking good according to my lab results, but who knows. Every day brings something new which may be fodder for this blog, maybe not. Whatever. I do have to tell you about a recent weird experience I’ve been having, but that will be for my next post.

In this post, the third in the series about what will happen to ‘me’ after “I” die, I want to suggest that our conception of our selves, especially our idea that we are beings composed of mind, body and soul, is socially-constructed. In a sense though, it matters not where these ideas come from if they have a real impact on my life.

By way of an example, if I have a stroke, for instance, I may attribute it to a curse put upon me by a disgruntled recently past relative for a purported wrong that I did him. However, it’s far more likely that my stroke was brought on by a busted artery in my brain. Nonetheless, the stroke and its consequences are what they are never mind their provenance. Durkheim stated that no religion is false. By that he meant that, in my example above, the stroke is real no matter where and how we think it originated. A more contemporary sociologist who wrote extensively on religion, Peter Berger, argues that much of what we call religious behaviour and even religious thinking and hypothesizing cannot be understood by deduction or reduction. He proposes that we use induction to figure out the ‘reality’ of religious experience, that we start with how we feel and experience in real terms, in our living beings, and acknowledge those feelings as real before we attempt any kind of explanation of them. This kind of fits with Unamuno’s views, although Berger is much more prosaic than Unamuno the poet-philosopher.

The provenance of the ‘soul’ is interesting and there is much speculation about it as originating in our dreams, for instance, or during hallucinogenic experiences, but once a belief in the ‘soul’ is socially established it, it has real world consequences.

Today, I intended to address the work of Emile Durkheim and Ernest Becker with maybe a little Max Weber, Karl Marx and Norbert Elias thrown in for good measure but I’ve decided not to do that in any formal sense. I have come to accept the futility of trying to summarize very complex arguments from a number of writers and how they interconnect at least in a relatively short blog post. I’m not here to convince you that I’m right anyways.

That said, all the above characters were sociologists except for Ernest Becker and he would definitely qualify as an honorary sociologist. They all conclude that religion and all ideas concerning souls, demons, angels, gods, and various other supernatural beings originate in society (i.e., in the family, school, church, law courts, governments, etcetera) defined very broadly. However, whatever their origin, religious, metaphysical ideas have real world consequences according to these guys. That’s clear.

Before getting any further into this post, I want to tell you a little story. You might be shocked to learn that I wasn’t always the model son. Sometimes I could be downright annoying and troublesome for my mom, and she didn’t deserve any bullshit from me. But she got some anyway. I remember one time (of several) when I was particularly obnoxious and teased my poor mom relentlessly.

I said to my mom: “Ma, if you had been abandoned on a desert island as a baby and were raised by monkeys, would you still be the same person you are now.”

“Yes,” she says, “of course.”

I retorted: “But what language would you talk? Would you talk monkey talk? What things would you believe? Would you believe in God?”

She replied something along these lines: “I would believe in God and I’d be the same person I am today. I don’t know any other languages besides French and English and why would I believe anything different than I do now?”

That was my mom. She wasn’t stupid by any measure, but she was ignorant in many ways mostly because she was busy raising a pack of kids and she was way too tired to be very curious and she couldn’t read metaphysics. By her answers to my questions she demonstrated a naïveté that ran deep but that allowed her to live her life in relative contentment. If my mom was ignorant in some ways, she was very knowledgeable in others. She raised tons of children, made bread like a pro and was a dedicated member of her church (although she didn’t know much about Catholic theology beyond what was in the Sunday missal). Later in her life she took up woodworking and was good at it, that is until my dad decided to sell the house and the shop from under her. After that, she fell into dementia and never recovered. I think she lost her appetite for life at that point. I loved my mom, I really did, and I regret teasing her. That’s one of my big regrets in life.

So, what was it about my mother’s responses that is significant for me here? I guess I was shocked by her very strange idea of her personhood and her unstated notion that ‘she’ was an unchanging, unchangeable being regardless of her surroundings and upbringing. It’s plain to me and I expect to most people that everything we know we’ve learned from others, either directly from other people in our homes, schools, churches, and from books or from any number of other sources. Of course, that includes any kind of ‘spiritual’ ideas we may have as well as our sense of immortality. Elias argues that we are not the individualists we think we are. He says humans are really interdependencies and interweavings. No human ever stands alone given the richness of the sources of our ‘selves’. The language(s) we speak, our gender, our cognitive skills, intelligences, values, religious/spiritual beliefs, etcetera are all learned, that is, socially derived.

It’s clear to me that my mother denied the influence of any possible ‘foreign’ source of her personhood. Obviously, there is no way my mother could know of her Catholic God if she was raised by monkeys on a desert island. The concept of God, like of language, and table manners is learned. How would my mom learn about the Catholic God? Many societies have concepts of God or gods or some such supernatural beings. There are hundreds (and there have been thousands) of religions on the planet, each with its own unique conception of immortality and supernatural beings (if they conceive of any). Babies born into those societies learn the rules and values of their specific communities. Why would my mother not realize that her position was untenable? I would suggest that her commitment to her beliefs outweighed any sense she might have had about the logical inconsistency of her position. She was like a Trump supporter in that sense. She may have been yanking my chain, but I doubt it.

Which god do you worship (if any)? Well, if you do still worship a god, probably the one your parents do (or did). These days, however, there is a movement towards more individualistic, personal forms of spirituality, a trend which fits in nicely with capitalist morality, individualism and consumerism while allowing people to retain a belief in the immortality of the ‘soul.’ It’s also true that significant numbers of people are now defaulting to atheism or agnosticism in greater numbers than ever before, a movement also compatible with capitalist morality. There is still a great deal of intergenerational retention going on today even if there are obvious exceptions. So the frontier mentality of rugged individualism and fending for yourself is still a thing in the Twenty-first Century. Of course, as individuals, we can be creative, and come up with new ideas and ways of doing things but we always do so using materials, processes and relationships that already exist. How else could it happen?

The truth is, we, none of us, can conceive of anything absolutely new under the sun. Everything we invent, think about, or imagine has roots in our interactions and interdependencies with other people via our social relations, past and present. The present is always built on the past. Inventions are generally new conceptions of how to use and combine already existing technologies or ideas. That means that new religious denominations or churches are invariably modifications on past ones. How many variations on Christianity are there? Lots…I haven’t counted them. Which one is the ‘true’ variant?

As I note above, one perspective all the writers and thinkers I mention above have in common is that they all agree that religion and our ideas of personhood originate in society as does the belief in immortality. Durkheim, for example, argues that the concept of God is actually a personification of society, a personification that can then be used to judge the behaviour of adherents still living. Elias in his book What is Sociology? builds a conception of individual/societal interaction by using a metaphor of a card game. In his metaphor, a card game is happening with four or five players. The game has rules, of course, to which all players must adhere. Then, one person decides to leave the game and another person joins in. That change of players does not affect the game, nor the rules. The new player must adhere to the rules like the drop-out did. The game is a metaphor for society. We are born into society, learn all the rules, then leave (die). Society goes on. The game goes on. Society, seen from this perspective, is supra-human. It exists above and independently of any individual yet has control over all individuals and circumscribes the parameters of possible ideas and decisions individuals can make. No wonder we come to think of it as divine.

Because society is supra-human and veritably invisible to most people, it’s not a stretch to understand why people ascribe to it a supernatural existence disconnected from their individual lives. Because it IS disconnected to their individual lives in a real sense. As Elias would say, the game goes on no matter what individuals do as players. To which Durkheim would add: the individual ‘soul’ is in the game but is actually a piece of the collective, social SOUL. Therein lies our idea of its immortality. Society exists before us and after us. It’s virtually immortal. Our souls are immortal because they are a piece of the greater social SOUL.

Durkheim defines religion as: “a unified system of beliefs and practices relative to sacred things, that is to say, things set apart and forbidden — beliefs and practices which unite into one single moral community called a Church, all those who adhere to them.” (from Elementary Forms of Religious Life, 1912) For Durkheim, sacred things are by definition social things and the sacredness of things can change with changing social conditions.

Ernest Becker goes much further than Durkheim when he argues that culture as a whole is sacred. For Becker there is no distinction between profane and sacred. It’s culture as a whole that promises people immortality. In fact, he argues that “Each society is a hero system that promises victory over evil and death.” (from Escape From Evil, 1975, page 124)* Of course, no society can promise such a thing. Becker writes:

But no mortal, nor even a group of as many as 700 million clean, revolutionary mortals, [in reference to China] can keep such a promise, no matter how loudly or how artfully he protests or they protest, it is not within man’s means to triumph over evil and death. For secular societies the thing is ridiculous: what can “victory” mean secularly? And for religious societies victory is part of a blind and trusting belief in another dimension of reality. Each historical society, then, is a hopeful mystification or a determined lie. (EFE, page 124)

Marx would have agreed with Becker here but he concluded that religion was the opium of the people, a salve to soothe the savage treatment that most people received under capitalism (as one might find depicted by Charles Dickens.) He found that religious beliefs were instrumental in mollifying the masses and having them accept class inequality under capitalism. Weber also recognized the class basis of religion although his definition of class was not the same as Marx’s. Weber, in his Sociology of Religion, addresses the early rise of religious behaviour in human interaction with drastic natural events like floods, volcanic eruptions, hurricanes, tornadoes, etcetera, the ‘soul’ in its various iterations and manifestations, and ritual. He argues that the forms of gods varies depending on natural and social conditions.

In conclusion, I just want to re-emphasize the notion that according to the sociologists I mention here as well as countless other sociologists and social scientists I don’t mention, ‘society’ is the source of our beliefs about the immortality of our person by way of our ‘souls.’ There is no ‘supernatural’ teacher that teaches us our values around immortality, and any ideas we have around these notions come from notions already just laying about out there waiting to be picked up and incorporated into our world view. In other words, our ideas around the immortality of the ‘soul’ do not result from perceived connection to an immortal God or gods, but from the immortality of society.

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*There is no substitute for reading Becker because his argument forms a cohesive whole. Pulling a quote out of his book, although provocative, is probably not helpful although I do it. I can’t help myself. If it spurs people to go read Escape From Evil so be it. Many of my early posts on this blog constitute a review of EFE. That would be a place for you to start in trying to understand his work. Just type Becker in the search box in my blog and you’ll find the relevant posts all numbered and everything or you can start here: https://rogerjgalbert.wordpress.com/wp-admin/post-new.php?post_type=post&jetpack-copy=874. You can then work your way through the archives on my blog site.

Durkheim (Elementary Forms of Religious Life) and Weber (The Sociology of Religion) both have sections of their books on the soul. Do a bit of research if you’re curious. Dr. Google is full of stuff on these guys and I’ve got all the books for local people to borrow if you’re interested. Elias is great. His book The Civilizing Process is well worth the read.