pain

Myeloma and Pernicious Anemia: My Constant Companions

~ Roger JG Albert ~ 4 Comments

Pernicious Anemia

In January of this year I published a post about the connections between myeloma and pernicious anemia. In that post I misidentified pernicious anemia as a B12 deficiency. It’s not. Pernicious anemia is actually an autoimmune disease that produces antibodies to a protein called intrinsic factor that is produced in the gut and that is required to ‘extract’ B12 from food. It’s a devilishly difficult condition to diagnose. Low levels of B12 are obviously an important indicator, but there are other reasons that a person might have low B12 levels. Probably the best accessible article on pernicious anemia can be found on the Pernicious Anaemia Society’s website. It’s well worth reading.

Now, I have assumed for some time that I have pernicious anemia but I’m no longer certain. It turns out that 50% to 70% of people who have a B12 deficiency, which I definitely have, will have that deficiency caused by pernicious anemia. I have not been tested for intrinsic factor antibody, a test that would definitively confirm a diagnosis of pernicious anemia, so I don’t really know if I have it or not.

Whatever, I know for a fact that I have a B12 deficiency. In order to treat that deficiency I inject B12 (cobalamin) into my thigh every two weeks. However, because of my mixed record of injecting B12 over the past twenty-five years I may have what’s called  Autoimmune Metaplastic Atrophic Gastritis (AMAG). That just means that my B12 symptoms may never go away, even after my regular injections. Then again they may dissipate, but I have no confidence that that will happen.

An International study is now underway initiated by the Pernicious Anemia Society to try to understand the extent of the disease and to track the problems people have had with getting a proper diagnosis. It may be that we will get some answers, but I’m not holding my breath. At seventy-five years of age, I have a limited amount of breath left in me in any case so maybe I should hold on to some of my breath!

Myeloma

Yeah, well, myeloma. As I noted in my January post, the symptoms of myeloma and pernicious anemia overlap considerably. So, I have no idea what’s driving me nuts with peripheral neuropathy, numbness and tingling in my hands and feet, fuzzy brain, poor balance, weakness, especially in my legs, and bone pain, to name just a few of the symptoms I’m experiencing. It could be both the B12 issues and the myeloma that are teaming up to keep me in my place, and the chemotherapy is also no doubt contributing to my now radically re-assessed quality of life.

___________________________________________________________________________________

So, that’s it. I’m old, I have a severe B12 deficiency that could be the result of pernicious anemia, and I have multiple myeloma, with its attendant chemotherapy.

As I lay in bed last night I harkened back to times in my life when I was still able to do things easily and effortlessly, things like canoeing, woodworking, building decks, garden structures, and a number of other physical things. I can still paint and draw, but with some difficulty. Writing is even getting to be an issue because I can barely feel the tips of my fingers on my left hand, my dominant hand.

It’s been difficult at times, not because of my physical abilities, but because of my attitude towards them. I’ve had challenges keeping the dark side away, the feeling that I can’t do things anymore like I used to, making me a lesser human being, somehow.

Carolyn and I both read the news and despair at the state of the world, but Carolyn seems to have a greater capacity than I do for keeping the dark side away and for maintaining a sense of perspective about the world. It’s true that the world is in a mess, but it’s always been in a mess if the press is to be believed. I have to keep reminding myself that the press, all of it, has a vested interest in propagating the dark side. That’s where the money is. Outrage and fear sells the goods. The bright side doesn’t.

That said, I don’t want to be captured by the dark side or the bright side. The world is a complex place. Life is finite and changes all the time. Mommy doesn’t have to change my diapers like she did seventy-three years ago, even if she were still alive. I don’t have to put a uniform on and go to elementary school. I never have to write a final exam or go on a job hunt ever again. Of course, I won’t experience the joy of the early days of fatherhood ever again either, of falling in love, nor of the thrill of discovering a wonderful, new camping spot.

I guess my point with all this rambling is that life is full of variety, both at the individual as well as at the socio-political level. Some things we call bad, some good. Those are judgment calls, which for us are adjudicated with reference to capitalist morality which itself is expressed in possessive individualism based on wealth and health. We look down on the poor and the unhealthy.

These judgments are not easy to counteract both at the individual and the political levels because they are so deeply rooted in our culture. They are so familiar to us that we consider them normal and reasonable. It’s easy to feel self-loathing for being poor or in ill-health. It’s almost expected of us. And those individual feelings are reinforced every day in a thousand ways by the vast majority of us as we compare ourselves to others, those with money or excellent health (mental and physical).

If I let myself I can easily be dragged onto the psychologically dark and barren landscape of blame and feelings of unworthiness. Enough of that now. I have a limited number of days, months, and years left to live. I cannot, I will not live them in fear and self-loathing.

Death is like a destination, one we have no choice in travelling towards. But, you know, some of the best trips I’ve taken have been at their finest and most exciting just before reaching our intended destination. Maybe that’s a good metaphor for the last bit of my life.

18 Looking in the Mirror.

~ Roger JG Albert ~ 7 Comments

[This is a reprint of a post I wrote in January of 2020. I reproduce it here in honour of Elizabeth (Bunny) Shannon who was especially drawn to it. Bunny died of cancer last month. She was a friend and an extraordinary person. I am privileged to have known her]

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

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

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

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

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

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

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

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

Ho Hum.

~ Roger JG Albert ~ 5 Comments

I guess it’s not really ho hum, but my life is definitely just ticking along. The ‘injuries’ I’ve sustained via myeloma and chemotherapy have prevented me from doing a lot of physical activity, but I keep getting the medical people telling me to stay active! It’s a tightrope I walk. Well, not a real tightrope, but you know what I mean. Do exercise? Pay for it afterwards for days with pain and joints that do not want to move. Don’t do exercise? Shorten my life and make moving around increasingly difficult. This is no fun. Well, it’s true that it’s no fun. Pain is no fun. But who promised me that I would have fun all the time? Fun is for the young and healthy, or at least for the healthy (of all ages). I really don’t expect to have ‘fun’ anymore. Should I be having fun? What kind of fun should I be having? Is there more than one kind of fun I should be having? Is reading a book fun? What kind of fun can I have when my left knee keeps wanting to fold on me without warning? If I get down on the floor, I may not be able to get up again. That’s no fun…I guess, although it might be fun for somebody to watch me try to get up off the floor. Is betting fun?

I really like this time of year. It’s cool in the shade and warm in the sun. We walked on the River Walkway this afternoon. It was cool in the shade and warm in the sun. We had iced coffee. Yummy. Is having an iced coffee on a warm, sunny afternoon on the River Walkway fun? I don’t know. Maybe I was having fun. I’m not sure.

I was going to write about pain and death today, but then I decided to keep it light. Pain and death are heavy. Fun is light! Long live fun! I DO really want to have fun, to possess it, to keep it close to me and give it a big hug but I’m not sure that’s the way it works.

You might think that chemo is no fun. Well, you might be wrong. Being hooked up to an infusion machine for a couple of hours has its moments. There’s no pain involved, but being tethered to a ‘tree’ with bags of saline solution and meds flapping around presents certain challenges when the need for a pee break presents itself. Thankfully, the ‘trees’ we use have battery powered brains and can be unplugged from the wall sockets. That way we (I in particular) can wheel them around to the bathroom and pee while we hang on to them and try not to pee on the lines. It’s difficult because the lines hang down quite far, often right in front of my pant zipper. It’s fine for women because you sit down to pee but for us guys the danger is omnipresent. Of course I can sit down to pee, but my anatomy resists that. The issue is compounded because the toilet seat in the bathroom attached to the Cancer Care Centre won’t stay up. That means I either have to hold it up while I also hold up the lines and other things or pee on the seat. Yes, the damned toilet has a slot in the front/middle but I’m not that great at aiming my stream which is erratic at the best of times. I don’t have the straight-as-an-arrow powerful stream I used to have in my youth. I used to be able to control my pee stream with little effort. Now I’m just glad when I can pee at all. I’ve gotten very used to just standing in front of a urinal or a toilet for several minutes at a time just waiting for pee to happen. It always wants to come, it’s always right there…but no. It can get embarrassing if there are other people around also waiting to use the ‘facilities’. It’s especially bad in theatres when at half time break during a musical performance or a play when peeing is so important but I just stand there with ten guys in line behind me waiting. Damn! So embarrassing. But what a relief when it finally happens. Now that’s a lot of fun!

The nurses in the Chemo Centre are a lot of fun. We joke around as they try to find a vein in my arm to poke. My veins resist entry. They hide very well. It’s a challenge for the nurses to find a vein in my arm on the first try. It gets a bit messy if it goes to three tries. If it does go to three tries the first nurse generally gives up and lets another nurse have a go. Whoa. That’s a lot of pressure to perform! I freak them out by pointing to good possible spots then watch them stick the needle in. They think that’s weird. Most people look away when they get poked. One of the nurses gave me a soft ball the size of a tennis ball to squeeze all day long. That, apparently, makes the veins stand out. I think it may be working. She got it first try last time I was in.

I talk to my local oncologist next Wednesday. That will be fun. He’s a nice guy. We always have pleasant conversations. Did I say I like this time of year? Well, I do. Summer is almost over so I can get back to regular blogging. I must say, I’ve been lazy this summer and have been hooked on cat videos on YouTube. I’ve also gotten tired of writing about chemo and the life of a cancer patient. Oh, I’ll still write about those things, but I’ll also throw in lots of other bits of stuff. Stay tuned.

Happy birthday, David.

#74. Up Yours 2020!

~ Roger JG Albert ~ 7 Comments

I was thinking of writing a timely, thoughtful blog post for my last one of the year, then the pain around my jaw went a long way to discouraging that. Yes, I feel that there is something quite wrong with my jaw, a wrongness likely associated with myeloma.

I went to see my dentist a while before Christmas because I thought the pain in my jaw and the increasing numbness there was tooth related, but it turned out on closer inspection by a specialist that the lesion there is probably myeloma related. Such a ducky way of ending 2020.

Interesting! This is my seventy-fourth post on my experience with myeloma and it turns out that Monday is my seventy-fourth birthday. Coincidence? Of course. There’s no way I could engineer my life that closely.

I suppose I’m happy that I made it to my seventy-fourth birthday although with everything that’s going on these days, it’s hard for me to get too celebratory around my birthday.

Frankly, I’m much more concerned with what happens on January 5th, the day after my birthday. That’s when I get my blood tested for the presence of myeloma protein and other noxious nasties whose only goal in life is to kill me. I was found to be in remission when my blood was last tested three months ago. Now, we go at it again. We wait and see what the verdict is. I must say that this is getting somewhat irksome.

Oh well. So far this post has been about me and my problems. No sociology and no profundity. Just a little whining and sadness. I think I’ve earned it. But it does stop here.

BTW…I hope for your sakes that 2021 is at least twice as good as 2020.

62 Meh…and sporangia.

~ Roger JG Albert ~ 4 Comments

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.

61 Apprehensive,Wistful, and Tansy* bugs.

~ Roger JG Albert ~ 2 Comments

A couple of issues have been dogging me lately and are crying to be released into the blogosphere. One is the fact that I am no longer on chemo and what that means, particularly with regard to my future treatments and my relationship with ‘my’ medical team. The other is a nagging, recurring introspection around my death and dying. Let me start with my limbo between chemo and remission.

Apprehensiveness

So, I’m not on chemo, at least not for now. Since October of last year I’ve been carefully supervised by a local GP oncologist and the Cancer Care Centre at the North Island Hospital in the Comox Valley. What happens now that I’m not on a regular regime of chemotherapy? I really don’t know, yet.

I called the Cancer Care Centre last week and they told me to contact my oncologist at the BC Cancer Agency (BCCA) in Victoria. Well, I contacted the BCCA to find out that the oncologist I thought I had is no longer employed at the BCCA and hasn’t been for two months or so. (Gee, thanks for letting me know.) It turns out I’ve been assigned a ‘new’ oncologist, one who has recently come here from Alberta. I have not met him but I’m scheduled to go to Victoria for an appointment with him in late October. His assistant told me to contact my local GP oncologist in the meantime. I get the sense that I’m getting a bit of a run around. I don’t think anyone is out to deliberately mess with me, but I’m feeling a little apprehensive about what happens now. It looks like I’ll have to be the squeaky wheel to get any answers. Let the squeaking begin.

I’ve noted this before, but one thing I am very grateful for is a great palliative care team. I can now report that my pain levels are going down steadily. That said, the weakness in my legs has not abated and that’s my main worry. That means that the neurological damage is not being affected by the meds I’m taking for pain. The pain is attenuating but the weakness is not. I’m still walking with two canes. I DO expect my strength to improve. Patience is the name of the game right now but I’m not that good at being patient.

Wistfulness

Yes, I am a bit wistful, longing for a more settled, less precarious, state of life. Of course, life is never settled but that doesn’t mean I can’t wish for it. Life means movement and change but we are not alway happy with that state of affairs. We resist change by getting into routines and habits. We can delude ourselves into believing that life is stable when we do the same things day after day, week after week. The fact is, life is only finally settled when it reaches its destination.

In France in 2007, Carolyn and I boarded a fast train (TGV) from Paris to Montpellier in the south not far from the Spanish border. Arianne and Tim were living in Montpellier at the time doing post-graduate work at the university there. The train was incredibly fast (TGV is Très Grande Vitesse), moving at an average speed of over 300 kilometres per hour. Yet it was the smoothest train ride I had ever experienced (and I had experienced many in my youth). There was no clickety-clack, that most familiar sound I had heard on every train trip I had ever taken in Canada between New Westminster and Edmonton (where I attended boarding school). Lengths of track in France are welded together making for a single track running for hundreds of kilometres. No seams, no clickety-clack. Frankly, I found it a bit surreal but amazing at the same time. I had filmed part of the trip just as I had filmed other events on our six week visit to France that year, but I had a hard drive crash later and all my recordings from our 2007 trip were lost. What I have not lost, however, are my memories of that trip and our whole time in France that year. I still have vivid memories of catching the train in Paris, almost missing it, boarding without the requisite documents, settling down in first class (we decided to treat ourselves), and relishing this unique experience.

In bed a few nights ago after turning off the light by my bed my mind wandered again as it often has in the last few months to my death and dying. I had been looking for a metaphor I could use to make sense of my death, to give me some relief from the constant reminders of my demise. The reality is that I’m on borrowed time with the inevitable outcome of my death looming. My brain wants to keep coming back to that. It’s determined that I will be relentlessly reminded of my death and it will make sure that that reminder holds pride of place in my frontal cortex, not content with having it stay in the back of my mind where denial is so easy. We live by metaphors so I figured it should not be too difficult to come up with a good one. But I’m not sure a metaphor can win a contest with my brain when it comes to the ominous death watch I’m experiencing.

Then, our French TGV trip came to mind. The more I considered it, the more it made sense to me as a metaphor for life. That conviction was further reinforced as I read the article I link to below on our fear of death. The message in that article is simple: life is finite so make the best of it.

How to not fear your death by Sam Dresser

Using a somewhat questionable syllogism in this article Dresser asks us to consider whether or not we are afraid of the time before we were born, when we didn’t exist. If we aren’t afraid of that time, then why should we be afraid of death which is simply a time of non-existence much like our time pre-birth?

Yes, I suppose so, but it’s not that simple. Before being born, in that time of nothingness, there is no accumulation of life’s memories, of hugs, orgasms, loves, hates, good meals, accomplishments, and regrets. There is no possibility of loss or even the conception of loss. The anticipation of death, by contrast, involves facing the loss of everything, including experiences and all things material and immaterial.

Of course there is no perfect metaphor, but thinking of our TGV trip as a metaphor for life (actually any trip will do), it’s obvious that before boarding the train there was anticipation but no knowledge of the imminent experience. Once on board, there is full knowledge that eventually the trip will come to an end but the passing scenery, the food, the weird passengers on the other side of the aisle, all consume our attention. Eventually, of course, time is up, the train pulls into the station and we are compelled to disembark. We may not want to leave the train, having enjoyed the trip so much, but that’s not an option. We must leave the train and its memories behind. Yes, coming into the station and dying are comparable I suppose. Both are inevitable, both are necessary.

Yeah, maybe that works, but I have to think about it some more.

____________________________________________________________________________

Tansy!

You might have seen tansies at one time or another. They aren’t super common but can often be found on vacant lots. In fact, the tansies in images 1 through 3 were photographed in an otherwise empty lot in our neighbourhood (by Carolyn). I sequenced the photos below to go from a wide to a tight view. The 4th image is one I took with the WiFi microscope at full magnification. Every one of the tansy flower heads is made up of over a hundred of the compacted cone/shafts you see in the 4th image. So, in image 1 you look over a minor sea of flowers. In image 4 you get close and personal.

What you don’t see in any of these images is what you see in the video that completes this gallery of images, namely the army of insects that populate tansy flower heads. You may be seeing only flowers when you look at images 1 through 3, but you’re also looking at bugs, lots of bugs, bugs invisible to the naked eye. The number of microscopic bugs out there is staggering. I won’t speculate on how many of them you had for dinner or are living in your eyebrows. That may be something you’d rather not be reminded of. Sorry.

I find it fascinating that we miss so much when we see the world with our limited eyesight. Truth is we see a narrow slice of the world, and that, unfortunately I think, also limits our appreciation of vast unseen, yet important to us, aspects of the world.

  • 1
  • 2
  • 3
  • 4
Tansy flower at full magnification with thrip (we think). Click twice on this image to activate it.

_____________________________________________________________________________

*a plant of the daisy family with yellow flat-topped button-like flower heads and aromatic leaves, formerly used in cooking and medicine.

60 So now what? (…and microscopic events)

~ Roger JG Albert ~ 6 Comments

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?

______________________________________________________________________

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.

  • 1
  • 2
  • 3
  • 4
  • 5

  • 6
  • 7
©Roger Albert. All images taken with Wi-Fi Digital Microscope.

59 Perturbatious Times (and wee bugs)

~ Roger JG Albert ~ 4 Comments

So, the last three weeks since my last post have been momentous (for me) because, as I’ve noted before, I was faced with the devil’s choice of carrying on with the chemotherapy that was sapping my mobility, or of putting my chemo into abeyance. It’s been very stressful for me and for my family, especially for Carolyn.

Before I get into my decision and the reasons for it, I just want to say that I’ve had really incredible support from the oncology staff at the hospital, as well as from the palliative care staff, especially Dr. Marie-Clare Hopwood and Adele, one of the nurses at the Centre. Pain is a huge issue and a major hindrance for healing. The challenge for palliative care staff is to manage pain in the face of severe illness.

That’s where I come in. I provide the pain, they provide the relief. Ideally, at least.

Well, I’m pleased to say that in some ways, with certain aspects of my pain, I’m getting some relief with the helpful prescription writing skills that Dr. Hopwood brings to the table. It turns out (and I’ve probably already told you this) that opiates, including hydromorphone, are not much good at attenuating neuropathic pain, that is pain that originates in the nervous system. Most of my pain over the past couple of months has been dominated by neuropathic pain in my back and legs. It turns out the neural systems in my back and legs aren’t doing a great job of controlling the large muscles of my lower body. Fact is, the muscles in my legs dance constantly with fasciculations.* You may experience the odd fasciculation, but my legs are alive with them to the point where my legs have less than ideal control coming from the nerves that are supposed to make them move without us thinking about it, I lose my balance constantly, and use two canes to walk.

How often do you get a house call from a doctor?

Well, Dr. Hopwood and Adele came over to the house a few days ago for a consultation. We all sat on the deck at a proper distance apart and Adele and Dr. Hopwood wore face masks. We talked for quite some time before Dr. Hopwood arrived at a strategy to help with the pain in my back and legs. I won’t get into details, but it doesn’t involve more opiates. I’ve been on the regime that Dr. Hopwood recommended for almost a week now and it’s going well so far. I have other pain issues, but they have to be resolved in other ways. More on that later.

This past Wednesday during a regular consultation with my GP oncologist, Dr. Bakshi, I put it to him that I felt my mobility was being severely compromised and that my quality of life was being significantly eroded, especially in the last two months or so. For instance, over the past couple of months my legs have given way on me four times and I’ve found myself on the ground with no ability to get up. Thankfully, there was always somebody with me to help me get back up.

I told him I was seriously considering abandoning my current course of chemo. I was gratified to find that he was in complete sympathy with me. He said that I had successfully completed more than 80% of my suggested nine cycles of chemotherapy which would have taken me to October 6th. So, I made the decision to put my chemo into abeyance. What does that mean?

Well, it means that I’m off chemo for the foreseeable future. My last blood work shows that my blood is normal with very little paraprotein, good liver and kidney function. Now we just have to wait to see when the myeloma will again haunt my bones, veins, and arteries, because it surely will. It’s just a matter of time. Of course, I still have intense neurological pain and severe weakness in my legs. That won’t go away any time soon, if ever. We just have to wait and see.

*A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as much as 70% of people experiencing them. They can be benign, or associated with more serious conditions. When no cause or pathology is identified, they are diagnosed as benign fasciculation syndrome. (Wikipedia)

Now for some wee bugs. I bought a 1000 power microscope on the internet that is pretty cheap but operates in conjunction with an app on my iPhone. It takes photos and videos. I find it fascinating that this little microscope can ‘see’ things I can’t see at all with my naked eye. I may use some of these photos as a basis for art work.

I caught these little guys at very high magnification on the backside of wisteria leaves. I have no idea what they are called. Any idea? I think they’re mites, but ???

54 Describing Pain can be a Pain.

~ Roger JG Albert ~ 2 Comments

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?

_____________________________________________________

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

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

~ Roger JG Albert ~ 10 Comments

Truth be told, I’ve always been a bit cranky. In the past though I was generally able to dampen my initial crankiness at what I perceived to be other people’s ridiculous behaviour, in the classroom, around town, in national and international politics, or on Facebook. I was able to step back, take a deep breath, and allow a sober second assessment of consequences and effects to take shape in my mind, making for a more measured response to the momentary ‘crisis’ whatever it might be. Oh, there were times when I reacted swiftly and even lashed out at people. I usually regretted those later. Ranting at the TV news was pretty common sport in the past when we still watched TV, a practice that I passed on to at least one of our daughters. I still rant like in the old days, but it’s more likely to be at a Facebook post or a news release posted online. However, ranting in private is different from personally and immediately striking out at someone for their perceived shortcomings.

Now it seems that my ability to generate a sober second thought is attenuating and my patience is wearing thinner. My private rants are turning into public displays of my impatience and I am now much less likely to bite my tongue when I think that people are being ridiculous or unreasonable. Of course that violates the first rules of teaching which, in my mind are patience and empathy. I feel really bad about that. My quick trigger reactions may be a consequence of my age and the fact that I have incurable cancer. It may be entirely idiosyncratic, but it could be that something else is afoot here.

Covid-19: the great disruptor

It could be that I’m not alone in my descent into more readily expressed displeasure at whatever affront, real or imagined, presents itself. Covid Times have created the conditions of uncertainty and disruption of habit that are hard for humans to take.

We, humans are creatures of habit and we don’t necessarily adapt readily or willingly to changes in our environment that require us to change the ways we live. We tend to react in our own ways to threats to our precious habits. Some of us hunker down even more deeply into already established patterns of social isolation. Others of us, like me, are more ready to express our pissedoffedness at the world. Now, more than ever seems to be a time of reaction rather than reflection.

It seems that people are now more than ever prone to stand on questionably acquired ‘knowledge’ rather than commit themselves to a course of study and learning that may lead to a more nuanced appreciation of economics, politics, current events, and other people’s actions both local and distant. And, since Trump, the ignorant minority is emboldened to speak out more often and vigorously. For us ‘experts’ who have spent a lifetime in study and reflection counteracting the tripe that comes out of YouTube and Facebook daily from people who have acquired whatever ‘knowledge’ they have from a marginal and peripheral relationship with analysis and evidence seems to be a lost cause. So, Covid-19 seems to have released some pent-up frustration at the world and our place in it and some people seem to be less reluctant than ever to stay silent in the face of it.

Covid-19 has definitely changed the goal posts in any number of ways, but life pre-Covid-19 wasn’t all that rosy either.

Pre-Covid-19, there were already serious cracks forming in the security and (often illusionary or delusional) stability of our lives. Personal debt dogged many of us to the point of financial ruin (and still does). Relationships were strained and addictions to alcohol and other drugs were on the rise as people self-medicated in attempts to deal with the emptiness that scoured their every wakeful moment and pitter-pattered through their dreams. Many of us were already leading precarious lives with no promises of a future with less stress and greater comfort and peace. General social distress was already reaching a breaking point when Covid-19 broke onto the international scene.

One thing I found particularly distressing was, and still is, the general ignorance of our global economic structures and their relationship to our nations, their sovereignty, and our individual choices. Very few people have any kind of a grasp on the intricacies of global supply chains and the interconnections of a myriad of corporations, factories and logistics experts on the conduct of business. The globally most powerful corporations have been masters at hiding the truth about mass production, distribution and sales. People think that ‘China’ is flooding our markets with cheap product and that our poor domestic corporations are suffering from this unholy competition. Nothing could be further from the truth.

Global corporations, many of them with very unfamiliar names, control global trade and often subject local businesses to rules and practices that benefit global finance capital rather than citizens. Look closely at the things you buy and more often than not these days you will not be able to locate where a product is manufactured. A label might tell you that a product was produced for such and such a retailer by such and such a manufacturer (with an address in Canada) by a factory in China, either owned by a ‘Canadian’ corporation or contracted by them, but it won’t tell you where a product was made. There is now a big silence about the true picture of global commodity production. But because no changes have been radical and the information to consumers has been accomplished slowly and inexorably completely under the radar with government complicity, it’s very hard for people to figure out what’s going on. Our lives are being orchestrated by forces hidden from us until something like Covid-19 comes along to expose some of the weak underbelly of globalization.

It seems many people now are worried about governments ‘taking away their freedoms’. Well, I have news for those of you who believe this: you have been slaves to the marketplace and an insidious capitalist morality for ages, but you don’t even recognize the bars that imprison you. You believe that a job is the one way to heaven. That no one should be given “free money” by government because that saps initiative. That individual action rather than community is the only thing that counts. You’ve bought into the tired, sick, libertarian agenda that feeds the globalist corporate agenda and leaves us poorer and fighting amongst each other. You believe that government is in charge and that its actions are the sole source of all the problems that you face in life. So delusional. So misguided. So sad.

There is no question that we need to be vigilant when it comes to government. With people like Jason Kenny, Doug Ford, mini-Donald Trumps at the helm of government, you can be assured that the global corporate agenda will be a high priority and the care and feeding of the citizenry will always take second place. Justin Trudeau and his Liberal Party are just a softer version of corporate lackeyism. Make no mistake though, Trudeau and his party are solidly behind the corporate agenda. It feeds them and they feed it with subsidies, grants, tax breaks, and with help cleaning up their messes when they decide to go strategically bankrupt or simply abandon ship. But enough of that.

Myeloma be gone…for now!

To change the subject, my cancer seems to be on the run for now. It will come back. Now I just have to deal with the side effects of all the drugs I’m taking, some of which I take to counteract the effects of others I’m taking. Virtually all of them have dizziness as a side effect. It’s a wonder I can even stand or walk ten feet on a good day. But I do walk, a bit wobbly I must admit, but still, I get out there and do things. It’s very gratifying. It’s wonderful. I didn’t think I’d ever be able to get out into the garden or into my shop or studio and do things, but I can. I know I’ve already told you this before, but I’m so happy about it, I just want to revel in it.

The garden

I also just want to revel in the garden. I’m working on a video right now of the gardens, but it’s a bit frustrating because things are growing so fast that I keep being tempted to re-video things that I’ve already recorded to give you a better sense of the beauty of the place, Carolyn’s own fabulous art project. Look at these amazing poppies. A couple of days ago there was only one or two blooms. Now look at them and there’s more to come, lots more! [since I wrote this more have opened!]

Poppies along the driveway.

Have a nice day, all of you! Keep your chin up! Don’t get too pissed off! Enjoy whatever you can (unless its murder or domestic abuse).