Up, up in the air.

What do I want to do with this blog? The thought crossed my mind that just giving up on it would not be the worst-case scenario. I’ve been at it for a few years now so it wouldn’t be outrageous for me to either quit entirely or maybe just take a break over the summer. Mygawd, I’m not making any money writing it. Lots of bloggers make money on YouTube with their blogs. I don’t, so what’s the point? Maybe I could monetize my blog, attach it to a video log and turn it loose on YouTube. After all, we DO live in a capitalist society. Might work. Probably not. 

The weather has been wonderful lately if you want to lay about on a deck. I sit on the deck close to the rock/fountain and watch the birds come down for a drink. The one in the video here is a female goldfinch we think. She flits around avoiding direct contact with the fountain. It would probably knock her over if she did. 

The wisteria gives them some shelter and protection before they come down to the fountain, but they’re still wary. Smart birds. There are cats prowlin’ around here. Our princess is one of them and she’s a hunter sometimes, mostly mice, but we don’t want to tempt her with birds. She’s being such a brat lately. She seems to have figured out exactly when I’m just about to fall asleep, then she pounces on the bed, meowling like crazy and poking my face with her paw. 

Tilly has been hanging around the pond a lot lately. She patrols the perimeter sniffing around trying to get frogs to abandon their rocks along the shore. I don’t like the way she’s been fixated on frogs lately. She come close but she hasn’t caught any yet. I’d be very pissed off if she did. She spends most of her time under the deck these days where it’s cool. She’s got such a thick black coat she must really suffer in this heat, but she never complains.

Got a call from my Oncology GP this morning. He noted that my bloodwork is coming back from the lab within reference ranges (normal). Tomorrow I go to the hospital for another infusion of Daratumumab. After that, I don’t get another one until the end of August. As of this month, I’m down to once a month for the Dara. I keep taking my regular chemo meds, lenalidomide and dexamethasone, three weeks on, one week off. So, I’m in a weird space where I have no myeloma detectable in my blood, but I’ll be on chemo for the foreseeable future, that is, until the drugs don’t work anymore. At that point they’ll put me on another regime. That means that I must be vigilant around the side-effects of the chemo. It’s not always easy to tell chemo med side-effects from pain med side-effects. 

For an old man, I’m feeling pretty good these days for about fifty percent of the time. I’m sleeping moderately well most of the time, but I have wakeful nights periodically. My neck is what’s tormenting me the most these days. According to my Oncology GP I have OAD (Old Age Disease). I can’t turn my neck more than 3% left or right. Maybe 4%. Makes it hard to do shoulder checks when I’m driving. Of course, I still drive. What are you thinking? I just have to turn my whole body when I do a shoulder check. That’s fine.

Technically, I have degenerative disc syndrome and it’s common among older people. I’m getting a CT scan early next month to confirm the diagnosis. Once I get the scan, I can ask my GP for a referral to someone who might be able to do something for me. That would be good. If I do get some relief, I’ll be able to do more writing, and maybe some sculpting. I’d love to do a bit of printmaking too. Or maybe I could just lie on the couch more comfortably. That would be good.

And the beat goes on…

Yes, it does. Sonny and Cher knew what they were singing about what seems like a lifetime ago now. I don’t know why, but the fact that Sonny died slammed up against a tree on a ski slope in Lake Tahoe the day after my birthday (January 5th) 1998 has my current attention. I guess it’s because his is a good example of a quick, unpredictable, death. Sonny had no time to sweat it. Death just happened to Sonny. No time to ruminate about it. Go Sonny go! I must confess that in some ways I envy Sonny his quick release.

Moving on, in my last post I told you that there was no longer any trace of multiple myeloma in my blood. I’m happy about that, but I must attach a disclaimer to that fact. The multiple myeloma will return. As I’ve repeated over and over, multiple myeloma is incurable although it is treatable. My oncologists have suggested to me that myeloma is a lot like type 2 diabetes in the way that it is treated by the medical profession. 

So, I can reasonably expect to make it to my eightieth birthday, although, frankly, longevity is not the holy grail here. And, of course, the six years from now until my eightieth year are not years owed to me. They are purely hypothetical time, years I might live, and years I might not. Moreover, as far as I know, after I’m dead, I won’t be able to regret anything about my life, how I lived it and for how long. “I” will not be so it’s ridiculous to speculate on what “I” might do after “I” am no longer. After I’m dead, “I” enter my immortality stage. 

I was not going to explore the whole business of mortality in this post, but I changed my mind. Bear with me. I just want to introduce here some ideas that I’ll come back to it in an upcoming post. These are not simple concepts to grasp, but, if you make the effort, it may help you understand life and death as I see them. So, here we go:

Humans are mortal, but only as long as we’re alive. To be blunt about it, it’s only when we are alive that we can die. Once we die, we are no longer mortal, we now become immortal, that is, we no longer change, and we consist only of what others remember of us. Our lives are complete. Simply put, immortal means not mortal. Well, once we’re dead, we are no longer mortal, by definition. We’ve arrived! We’ve become immortal! That doesn’t mean that we will live on forever in some form or other as defined by most of the religions that exist on this planet. No. “We” exist, after our deaths, only in the minds of others. 

My definition of immortality is clearly not the one espoused by most religions. The Abrahamic religions, for example, get around the problem of death by coming up with the idea of the soul. According to Christianity, the soul is the immortal aspect of human existence and is continuous before and after death. The body may return to the planetary store of compounds, atoms, and molecules, but the soul, well, the soul lives on in some kind of ill-defined relationship with a deity, “God” in the case of Christianity.  My definition of immortality does not acknowledge the bicameral nature of the person as consisting of body and soul. I see no evidence for the existence of a soul. Therefore, it does not ‘fit’ into any explanatory scheme I concoct. 

I could go on and on about death and dying as most of you well know, and as I promised I’ll get back to it in a subsequent post, but for now I’ll drop the philosophizing about immortality, death and dying and take up an issue that I’m currently faced with given the fact that we’ve tamed my myeloma. 

A few months ago, while I was still struggling with active myeloma, the pain in my bones was severe, and it was compounded by peripheral neuropathic pain. At that time a priority for me was pain relief. It still is to a large extent, but now, my priority is to see how far I can go in weaning myself off pain medications that were crucial for me for the time I was under the full effect of myeloma.  Now, I’m on two prescription pain medications and I take acetaminophen when I think of it. I was on three prescription pain meds until just recently, but I quit one of the medications cold turkey. Along with several annoying side effects, one of the more insidious side effects of that medication is dry mouth. My sense of taste was affected. I could barely taste some of my favourite foods and some I could not taste at all. I was anxious to try life without this med and as it turns out I’m quite confident that I’ll be fine without it. 

That leaves me with two pain meds. Gabapentin is a med I take for neuropathic pain. I’m currently cutting back on it to see how it goes. I’m not going cold turkey on Gabapentin, but I am determined to eliminate it from my pantheon of drugs. Hydromorphone is the drug that is the backbone of my pain treatment. I take it in slow-release form twice a day to deal with the daily predictable pain I get from myeloma’s excavations of my femurs as well as from sciatica and degenerative disk disease. I can also take hydromorphone in what’s called a pain breakthrough mode. That is, if the slow-release form of hydromorphone isn’t doing the job, I can take a more fast-acting form of the drug in any amount I feel is needed. I have taken breakthrough hydromorphone, but only sporadically, and as a last resort. I take as little of this drug that I feel will do the job. Taking more than a few milligrams of breakthrough hydromorphone leaves me hallucinating, not something I enjoy.  

The problem is that I’m seventy-four and at my age, the degenerative process is well under way. There’s no stopping it, and it’s not satisfied until it’s done. At my age, just about everybody has back pain and sciatica. These are conditions endemic to the species. It serves us right to have evolved from an arboreal species to one that is bipedal and an upright walker. Monkeys don’t have back problems. 

So, my challenge at the moment is to reduce my intake of pain meds to the point where I get pain relief without experiencing all the negative side effects of the various meds involved. So far so good. We’ll see how it goes.

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I’m writing this post on one of the hottest days of the year so far with tomorrow promising to be even hotter yet. Thankfully we have air conditioning, so the house is staying at a very acceptable 24.5˚C. Outside today, according to our weather station, the temperature has topped out at around 40˚C. Tomorrow, the prognosticators have promised us temperatures of 40˚C at mid-afternoon, so the beat goes on. 

I’m not complaining about the weather. The weather is what it is. It doesn’t respond to our needs, but instead requires that we respond to it if we’re not happy with it. Good luck with that. On to the next post now. Maybe I’ll take less time to get it out than it took me to get this one out. No promises. 

Check out this article Carolyn found for me. It’s a great discussion of chronic pain:

https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other

#86. ???????

I woke up this morning at seven twenty three and got out of bed at seven twenty eight. In that five minutes between seven twenty three and seven twenty eight I had a couple of thinks1. These were little thinks, nothing momentous or earth-shattering. They were thinks about what I would do today. I decided on a couple of things to work on, writing a blog post is one and the other is going down to my studio to continue a clean up I started some time ago in preparation for some work I want to do.

Today is the day after my Daratumumab infusion at the hospital. That’s a bi-monthly event for me. We get to the hospital for a nine o’clock appointment. I grab a coffee after being logged in at the Wellness Centre then make my way to the Cancer Care Centre. After getting settled in they hook me up to an IV drip and then call the pharmacy to tell them I’ve arrived and that they can prep the Dara. Yesterday it took over an hour for the pharmacy to get the Dara to the Cancer Care Centre. I waited patiently but with a little frustration, I must admit. After about ten fifteen they released the Dara starting the infusion. I read my book for a bit but soon fell asleep. I woke up at eleven forty five. Cool. The infusion was almost done. It generally takes about one and a half hours. At about twelve twenty, Carolyn picked me up and we came home.

Along with the Dara, as you well know, I take dexamethasone and lenalidomide. These are the chemo drugs. Dara is not a chemo drug, but a monoclonal antibody. Click on the word Daratumumab in the paragraph above for some good information about Dara. Dex and Lena are very different drugs that do different things in the blood. Dexamethasone is a steroid and has some annoying side effects like interfering with sleep. That it did last night. I slept in fits and starts and got maybe four hours of sleep total. I won’t get much sleep until Monday.

My life these days is organized around my chemotherapy. Of course, my Dara infusions predominate, but the dex has the most immediate and dramatic effects aside from the hydromorphone. I most often go to bed before nine o’clock in the evening. I rarely go to sleep right away, however. Yesterday, I did fall asleep after going to bed at eight thirty. I woke up about forty-five minutes later with a start. I had gone to sleep with the cat laying between my legs. I dreamt that the cat had been joined by my brother. I woke up with nobody on the bed with me. I was startled when I woke up but relieved too because I find it uncomfortable to have the cat sleep with me. I mean, I could easily get her off the bed, but I’m a sucker for the cat. She rules.

A preoccupation I have these days relates to the purpose of life and how to determine what to do with the time I have left to live. I have all kinds of time every day to think about things so off I go. Obviously there will be some physical restrictions that hamper the kinds of activities I can do; after all, I am seventy-four years old. One serious big think I’m having these days is coming to grips with the kinds of activities I am still capable of doing amongst the many I did during my younger years. I don’t want to simply lay back and avoid any activities that would require of me exertion that might tire me or leave me incapable of doing anything for a couple of days afterwards. I’m still strong enough, but I’m not as well coordinated as I used to be. I’m learning that I have to strike a balance between what I want to do and what I’m really capable of doing. There is a slew of activities I did when I was younger that are beyond me now. I have to be realistic about these things. I cranked up the chainsaw the other day and chopped a bit of wood. That was fine. I could do that. But what I want to do in terms of sculpture would require that I use saws and chisels for a sustained period of time. I don’t know if I have the sustainability to sculpt, but I know I can paint and draw. Whether I have the desire to do these things is another question.

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1 This is a verb being used as a noun, but it’s probably not original.

62 Meh…and sporangia.

Not much motivated to write about my myeloma journey right now. My last post was on August 23rd. Today is Monday, September 14th. For some time I tried and succeeded in putting out a blog post almost every week but lately with the uncertainty around my treatment, I’ve lost interest. So, it’s been three weeks since my last post.

I talk to my local oncologist in a couple of days for fifteen minutes or so but he doesn’t make the major decisions around my treatment. I have a meeting scheduled for the consulting oncologist next month, but I have no expectations around that consultation. It will be the first time I talk to this guy. He’s new in town. I’ll be just another file to him.

From my last set of blood tests I know that my blood is pretty much normal. That will change. Technically, if I’m considered in remission they’ll do more blood tests every three months and reconsider my situation then. But right now, I don’t know if I’m in remission or not.

I already told you that I decided to cut my chemotherapy short about six weeks ago now because one of my chemo drugs was playing havoc with the way my muscles are supposed to respond to the neurological signals controlling them. My thigh muscles are particularly affected by bortezomib (trade name: Velcade), the offending drug, to the point where I experienced severe pain and weakness in my legs, especially in my thighs. That situation seems to be improving slowly. I’m taking some good pain meds and they are helping the situation, and I’m seeing a physiotherapist, but I think just being off chemo is making a big difference.

It’s been a roller coaster ride over the last few months. I’m tired of it. Thankfully, being off chemo is giving me some respite although I still have great fatigue and restricted mobility. I am doing better and I’m happy about that. Lately I’ve been able to draw and paint a little and use my microscope, telescope, and iPhone to put together some interested projects. I can’t do anything for more than a couple of hours at a time, but that’s infinitely better than staring at the ceiling all day long. I’m actually enjoying myself. I have a secret dream, however, that I shared with my physiotherapist. I shouldn’t tell you because if it doesn’t happen I’ll be sadly disappointed, but I’m determined to get into (and out of) our canoe next month and paddle around for an hour or so without assistance and without dropping like a heap on the ground unable to get up. That would be cool. I also want to drag the trailer to Strathcona Park next month for a couple of days of camping. My real secret though is that I want to restore our canoe. I can’t face that task right now, but maybe later this year, who knows. Over the past while I’ve accumulated most of the materials and tools needed for the job. Now I just need energy and strength in my legs.

In any case, while I wait to see what will become of me and how much time I have to live, I’ve been able to occupy my time productively within the limits of my illness. Well, it wouldn’t do to just idle away my time now, would it and just passively wait to die? No! In our world idleness is the work of the devil! Can’t have that.

Wait, I can see it now. I’m on my death bed, hours if not minutes from expiring permanently, but I think that I’ve left something unfinished. No! Can’t do that. Must…live…long…enough…to finish…this…blog…post. And I do. And I die happy.

Of course worrying about a bucket list or unfinished projects or missed communications is all moot. After we’re dead, there is nothing. Concepts like regret are irrelevant. Even if one believes in an afterlife, I can’t imagine anyone thinking that afterlife would be taken up with regrets about things left undone or unaccomplished in life. What a drag that would be.

One thing that’s given me a lot of pleasure lately, as I note above, is exploring the microscopic world with my microscopes and iPhone. And I’ve discovered that I can use my iPhone to record an image on my spotting scope. I’ve posted those images on Facebook so I won’t post them again here. However I will post here a couple of videos I did of sword fern sporangia. I posted a video here of an exploding sporangia some time ago while it was still attached to the leaf. This time I scraped the sporangia off of the fern leaf and that provoked them to open up en masse. The videos are at two levels of magnification. There’s a close-up one and one at a lower level of magnification.

The spores are quite visible after the sporangia have evicted them. They’re the little beige dots littering the area not covered by sporangia. I want a microscope powerful enough to have a closer look at spores, but what is interesting to me even at this level of magnification is that we normally associate movement with animal life and here we have a plant that is moving…with purpose.

I love that as I look at the world through a microscope it’s obvious that all living things on this planet have a lot in common. Carolyn and I watched a YouTube video (NOVA) the other night on DNA called What Darwin Didn’t Know. It really reinforced the fact that DNA is ubiquitous and that life is much more unitary that we think. We really are all in this together. It would be awesome if we could develop respect for all life, all of us that is, including Monsanto and Bayer executives, oil company boards, politicians and all of us. Of course, respect for life also means respect for death, because they are not separable. Life depends on death. We don’t respect death now. We fear it. What would respect for death look like?

PS: I hope the videos work for you. If not, please let me know. For those of you receiving email notifications of my blog posts, you may need to go to the blog site to see them rather that stay on your email to view them.

PS2: My next blog post will be completely different from what you’re accustomed to read here. It’s about a brother I would have had if he had survived childbirth.

60 So now what? (…and microscopic events)

Thursday, August 13th is the second Thursday since early October, 2019 that I have not taken Bertezomib or cyclophosphamide, the two main chemo meds that I’ve been taking for months. I’m still on a low dose of dexamethasone and now nortriptyline, along with low doses of hydromorphone. My palliative care team is now fully involved in my case because of the Bortezomib induced neuropathy I am experiencing. Oncologists know very little about pain and make no bones about it, as I’ve noted before, nor do most GPs, so it’s up to the palliative care doctors to do what they can to relieve pain. GPs are often left to deal with the pain their patients experience but it’s often a guessing game finding the right palliative. It’s best left to the experts.

As it turns out, hydromorphone may not be the best opiate for me. In fact, it may be exacerbating my pain issues. So, back to the drawing board. We’ll be modifying my pain med regime one step at a time to ascertain the impact of whatever it is we do without crowding the issue by changing more than one med at a time. I can tell you one thing: I’m sick and tired of being in mind-numbing pain all the time.

Frankly, I’m feeling somewhat adrift. I was so used to the chemo regime and now that it’s gone, I’m struggling with what to make of it. So many unknowns as I slide into a time without chemo but with no promise of remission or relapse. I’m sure I’m not alone in this living purgatory, somewhere between chemo and remission. My GP oncologist told me that he would be in touch in six weeks or so to see how I’m doing and, I suppose, to set up a schedule for follow-up blood work. I should be getting blood tests every three months or so to ascertain the state of the myeloma proteins in my blood. Once the proteins start increasing, it’s time to make a decision again about chemo. Sheesh.

Whatever, the bottom line (to use a business metaphor) is that I’m getting ever closer, as we all are, to the moment of my final breath. The closer I get the harder it is to deny it. The difference between you and me might be that I’ve been issued my ticket to ride, stamped and ready to go in the form of multiple myeloma.

No, I’m not immune to the lure of death denial. I’m not anxious to die. I don’t have a death wish. In fact, I have a life wish. But wishing and hoping aren’t going to get me past this one. It’s just so hard to fathom being dead although I can see that it would be a relief from American politics.

Lots of people urge me to be positive and/or stay strong. Well, I’m not curled up in a fetal position in a corner of the living room wailing and gnashing my teeth waiting to die. Still, it’s a bit daunting thinking that, like my parents, grandparents, and all ancestors, I will also be relegated to the dustbin of history, and in the not-too-distant future.

Yes, I stay positive. I’m registered for a webinar organized by the Multiple Myeloma Foundation set for this Saturday at 1 PM. I wouldn’t be doing that if I weren’t positive! The webinar is to inform us about the latest treatments for myeloma and the progress that’s being made to find a cure. Yes, some researchers and scientists are actively looking for a cure. Problem is they’ll never find a cure for death.

Yes, I stay strong, whatever that means. Sometimes I just want to scream about the injustice of it all, but I don’t. I stay calm, but I seethe inside quietly with my teeth clenched. Maybe that isn’t staying strong. I don’t know. One thing for sure is that when worse comes to worse, I won’t hesitate to get zonked on morphine. Suffering is highly overrated. I’m not sure what the virtue is in suffering. You tell me. Is there a reward?

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Okay, so now for something completely different. Some of you will know that a couple of weeks ago I got a microscope that I can use in conjunction with my iPhone. I get some great pictures and video with it. I also have a standard lab microscope that is actually more powerful than my Wi-Fi microscope, but it’s not easy getting pictures with it. The pictures below were all taken with the Wi-Fi microscope and my iPhone. The first three images are pretty straightforward. The others not so much. The first image (1) is of a dragonfly wing. The second is a photo of the eye of a tiny fly. Number 3 is a larger image of 2. Image 3 is of the spore sack of a fern. The 5th is much different.

Don’t get grossed out now, but the 5th image is a very enlarged view of a mole on my back! I know…eweeeew. Weird, eh? You might want to keep microscopes away from your body after seeing this. Number 6 looks very flesh like, but it’s a highly enlarged view of a plant part. I can’t remember which plant or which part. Number 7 is…I have no idea. I don’t recall taking this image, but it’s of some plant part. Reminds me that I have to more carefully document these things, not that I’m doing a systematic study of anything. It’s just interesting to do while I wait for my myeloma to return.

I’m finding some great inspiration for abstract paintings here.

54 Describing Pain can be a Pain.

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

Princess and the Fountain.
Puppy. No name yet.

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

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

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

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

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

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

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

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

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

43 – Plugged in!

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

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

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

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

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

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

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

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

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

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

42 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.