Myeloma: a Killer by Degree

[I wrote this post in May 2022, not that long ago. I reread it and I think it bears reposting. I keep getting bad news on the myeloma front. I had an MRI last Sunday and it showed a growth, a tumour if you like, growing on my lumbar spine and extending upwards to the left side of my thoracic area half way up my back. It’s a fairly new thing, and is ten centimetres long, five wide, and seven thick. So far I haven’t felt any ill effects from it except that my legs are beginning to feel slightly numb. That’s not good, and just adds to the peripheral neuropathy that already leaves my feet in a constant state of pain, pins and needles, and spasms. At least it looks like I’ll be continuing on my carfilzomib protocol into September.]

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. 

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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 [again] 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.

Memory Works With A Little Effort

I’m not sure if you’ll be able to access this Atlantic article or not, so I’ll just summarize it a bit for you. It’s about memory or remembering and whether you remember events in the past from the first or third person perspective. I would expand the argument to include imagined events in the future.

When you remember a past event, say one that was particularly notable, do you remember it as you initially experienced it, or do you see yourself in it as a character, almost as an actor, in a play?

I’ll die soon. Soon is an indeterminate word, mind you. I’ve already commented in previous posts about the fact that I’ve not done all that well with chemotherapy. It seems that I’m probably a high-risk cancer patient in any case. I’ve been subjected to a number of different chemotherapy protocols. Now, according to the oncologist at the BC Cancer Centre in Victoria in charge of my case, I’m running out of options. At the moment I’m on a two-month trial with a drug called carfilzomib (trade name Kyprolis). So far, I’m entirely underwhelmed by its effectiveness. The next month will tell the tale. I’m not very hopeful given my recent bloodwork and my reactions to the chemo drugs. But, I haven’t completely abandoned hope. I may still get to live a few more months.

Recently I had a bit of a discussion with the family about MAID (Medical Assistance in Dying). It’s not something I need to consider immediately but eventually it will become an option, particularly when the levels of pain and immobility outweigh quality of life issues for me. I see no need to lie in bed in pain awaiting more or less imminent and sure death when there is the option of assisted suicide. I’ve tried to imagine my dying moments. I can do that from the third person perspective, but definitely not from the first person perspective although I know what it feels like to go under general anaesthetic. I imagine MAID as like going under general anaesthesia but never waking up again. I see myself lying on a gurney with a doctor setting up the meds and then injecting me first with morphine or something like that before administering the killer drug. I can imagine that. I can remember in the first person going into the Hospital to have my kidney removed in 2002. Now that I try, I can also see those events in the third person. Strange.

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It’s amazing how many incidents and events I can recall if I put a little effort into it. I have seventy-five years of them to capture. Lots of fodder for remembering. I could write a book, although there is a lot that I would not share with you or anybody, private things.

This post is about me as I age from 1949 or so until now. My life isn’t over yet, but I’m getting close to a complete lifetime. I can track my parents’ lives, at least as far as major events go. My father was born in New Brunswick (1911), my mother in Alberta in 1924. They both died at the Dufferin Lodge in Coquitlam, my father in April, 2007 and my mother in January, 2018. Noting their dates of birth and death means nothing, of course. They are merely life’s parentheses. It’s what transpired between those dates that makes a life. The same goes for me, and you. Photographs tell a bit of the story, but in a static kind of way.

In the first picture, I’m standing there with my sister Denise. She was born in 1943, four years before me, to a mother who subsequently died in 1945 giving birth to what would have been her first son. Denise died on December 13th, 2004 of cancer. I’m not sure where this picture was taken. It looks like it could be in Sapperton, not far from the Royal Columbian Hospital. I would welcome correction on this from anyone in the family. By the time this picture was taken the family lived at 634 Alderson Avenue in Maillardille (Coquitlam).

In this picture I look to be maybe two years old. Denise would have been six. I am endowed with a natural Mohawk hair do. I still have it. I don’t remember anything of what was happening when this picture was taken. I was way too young. The photograph does nothing to jog my memory.

Denise and I always had an interesting relationship. She was pretty tough and I was mouthy. She threw a knife at me at the dinner table when I was probably a pre-teen. She missed, but it was close. That was memorable and I see it in the third person. But during my late, listless, teenage years, after returning from College St-Jean and not knowing up from down, I lived with her and her then husband, Roy, for six months or so, and often looked after the kids (which they had adopted). They had a fairly large home in Vancouver, off of 41st. The basement was made out to look like a TiKi lounge. Strange now, but not so for the times.

I worked with my father at a couple of re-manufacturing plants in Surrey and Langley. But I also worked at a planer mill in Fort Langley. I got drunk on occasion with some of the guys from work. It’s amazing we didn’t kill ourselves on the way home from work. One of the guys drove a convertible and that’s what we came home in most of the time. Mom and Dad had to know but they never said anything.

From the time I left College St-Jean until I enrolled in courses at Douglas College in New Westminster in 1970 or so, I worked at a number of odd jobs, mostly in the lumber or related industries. For a few months I worked at a plywood plant on Braid Street in New Westminster. I remember the smells and sounds of that place the most, but I also remember (in the first person) the work I did, piling pieces of veneer in bins in preparation for pressing them into plywood. The last job I had before going to Douglas College was at a sawmill in Marpole. I worked there for maybe six hours total. I recall being required to ‘clean up the chain’ of massive timbers. I did that for a bit but then I slipped and had one of the timbers fall on me as I fell off the platform. I could barely walk after that so I dragged myself to the first aid shack. Nobody there. So I struggled to my car (an Austin Healey Sprite) and drove myself to the hospital. I had back surgery then. Dr. Hill (I recall his name to this day) removed a disc in my lower back. Worker’s Compensation (now Worksafe BC) paid for everything including my first year of studies at Douglas College. There was never an inquiry as to what happened at the mill and as to why there was nobody in the first aid shack when I went there for help. Workers Compensation just paid for everything, no questions asked.

I find the series of photographs here helpful in some way in jogging my memory. The early ones don’t help at all but the later ones do. The one I posted of me doing my Knowledge Network tele course is still available to me as a video so I can go back and see myself over and over again if I so choose. I have many more photos too, but I’m not going to post all of them here.

All I wanted to do here is give the flavour of my life as I grew up, then grew down. We all have individual experiences of life. I often think of the many thousands of people who have died in conflict over the centuries, their lives often cut short by machetes, as in Rwanda in 1994. I suppose if a long life is a good thing, then I’ve had a good life.

Look at the forehead on that kid!
Me, maybe two years old
Me, five or six

Me in 1959 setting off for College St. Jean
Me at sixteen or so
Me doing television – late 1980s, early 90s.
Me not long ago

Carfilzomib and Buttle Lake

Wednesday, August 17th, 2022 – 2:30 PM

Just got back from the hospital for the first infusion of carfilzomib for the second cycle of this protocol. It went well, but as usual, I’m dexed out. Given this was my second cycle I didn’t have to stay after my infusion for an hour of observation. I had to go to the lab yesterday for bloodwork and the results were available today for us via MyHealth. Things seem to be going moderately well from the looks of my bloodwork. I have some reduction in my paraproteins (not that you should know what that means) which is good news but my kappa free light chains are going up. That’s not good.

However, we did a fair bit of reading about carfilzomib and one of the nasty side effects of that drug is renal toxicity. Given that I have only one kidney, that’s not great news. We just have to hope for the best.

As I said, I had to go to the lab yesterday for tests. What I didn’t say is that we spent the last three days at Buttle Lake in Strathcona Park for a bit of camping with the family. Yesterday, we had to race back to Courtenay to get on the lab waitlist. Around noon I started out at 29th on the list as we came into Campbell River but when we got to the hospital in Comox an hour later, I was down to 10th place which is quite acceptable. I didn’t have to wait too long to get my blood extracted.

Sunday, August 14th, 2022 –

We packed up yesterday and this morning. We were in four vehicles. I rode shotgun in the truck. It hauled most of the food, the banana boats and me. I won’t identify individual family members here. Suffice to say that there were enough of us to pilot four vehicles along with some passengers. We’ve been camping at Ralph River campground on Buttle Lake for upwards of thirty years. We’ve had some wonderful times on that lake, and particularly at that campground. It was such a pleasure getting back there. Frankly, I doubted that would ever happen.

From 2019 a few months before my diagnosis

I already posted this photo on this site, but I decided to post it again because it tells a story of how we had such great fun improvising and adapting the canoe with outriggers, a sail and electric motor. We’ve had the canoe for over forty years. We’ve had such great times with this canoe for decades! This boat didn’t come with us on this trip. I’m not ruling out the possibility that it will again feel the waters of this lake on its keel. Chances aren’t great, but we’ll see.

When the picture above was taken, so was the picture below.

Buttle Lake at Ralph River

You can see that these stumps are a predominant feature in the landscape. Who knows why the loggers left them (probably no need or profit in removing them) but they did and I took the opportunity to draw and paint them*. I can’t remember exactly when I drew them, maybe it was 2014, but that doesn’t matter.

You can see the water surrounding the stumps. They are maybe a half a kilometre from the campground and there are connecting pathways. Below is a photo of one of those pathways, the one they built for the movie See with Jason Momoa. That pathway and surrounding terrain used to be clear from the campground down to the stumps with a gravel base and not a lot of vegetation as you get closer to the lake. Now, as you can see, it’s flooded and there’s lots of vegetation, but the rocks that define it are still clearly visible.

The lake must be at least three metres above what it was when I took the above picture in 2019. The stumps are nowhere to be seen. They are all underwater. What a dramatic change! What a metaphor for life! Things can change so quickly and dramatically.

Main pathway from lake to campground.

Monday, August 15th, 2022 – 6:55 AM

I was awake for some time before 6:55, but that’s when I got up. The sky was pure blue. The previous evening it was overcast and spit a little rain. This morning was beautiful. Our campsite was open to the lake but the path to the lake was impassably muddy and crawling with Western toadlets to boot. We really had to go around to Jason’s pathway to get to the lake. I set up a chair in our campsite (called a gravity chair)facing the lake. For some time I watched the sun hit Mount Philips across the lake. Eventually, the shadow cast by the mountains behind us on Mount Philips reached the lake, but by then I was busy doing other things and I got distracted by this as I pushed myself vertical in my chair:

Cedar Boughs.

I actually took this picture later in the day after the sky had clouded over. I stared at this sight for a long time. There is an odd quasi-symmetry to the branches and needles. I contemplated drawing this, but I just couldn’t garner enough energy to do it. Instead, I took pictures and stared. I found looking at these boughs soothing. My pain dissolved. I relaxed completely. Such a great feeling…at least for a time!

I can’t thank my family enough for making it possible for me to get back to this lake and this campground. I’m an old man now. Many of the things we did for years like camping and messing around in boats are just not possible for me anymore. Maybe if it were only a question of age, but it’s not. Myeloma and chemo complicate matters immeasurably. Still, when I was at the lake I could much more easily recall so many pleasant experiences we had there. I love that place. It’s so much better to feel love for this place and for my family than to dwell on my health or lack of it.

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*See my art blog for images of the Buttle Lake stumps in ink and pencil: https://rogeralbert.blogspot.com/p/drawings.html

The habit of life and a new chemo protocol.

July 18th, 2022

So, we went to the Hospital this morning to the nuclear imaging department to get a baseline assessment of how well my heart is pumping blood. That’s in preparation for my initiation into a new chemotherapy regime starting tomorrow since the one I was just on including lenalidomide, dexamethasone, and Daratumumab wasn’t working anymore and it was producing some very interesting symptoms like temporary paralysis or what my GP considered seizures. These ‘seizures’ didn’t last for more than an hour or two, but had lasting effects like extreme fatigue and headaches. I thought I might be having a stroke or something of that nature, but that’s not likely. In any case, my GP ordered a CT scan of my head. It found nothing! ⁉️He also ordered an MRI of my lower back. That will happen at the end of August. That might be revealing. I’ve had issues with my lower back since I was twenty years old.

Also this morning I injected one milligram of vitamin B12 into my left thigh. I do this every Monday because I have an inability to absorb B12 from food. Sometimes I inject it into my right thigh, just for variety. If you’ve never been tested for B12 you might want to consider it if you have a lot of fatigue. That may not be easy if you don’t have a family doctor, but worth it, if for nothing else, to discount it.

Tomorrow afternoon I go back to the Hospital for my first infusion of carfilzomib (trade name is Kyprolis). It has some interesting side effects and reportedly is hard on the cardio-vascular system, but is touted as a solid replacement for Bortezomib (Velcade). It’s relatively new on the market.

All the things I note above are to give me a longer life. That’s the goal. I’m into that, but eventually I’ll have to kick the life habit. We are creatures of habit. (see my note below) Are we ever. And the biggest habit we have is life itself. No wonder we are so reluctant to give it up.

July 19th, 2022

Well, tomorrow is today. Went to the hospital’s Cancer Care Centre for a 1 PM appointment for an infusion of carfilzomib. I got a low dose infusion, forty-four milligrams. I experienced no adverse effects that I noticed. My next infusion, next Tuesday, will be one hundred and fifty-four milligrams. That will be the ongoing dose I get every week for three weeks, then I get a week off before going back for another round of three weeks. So, my life is pretty much tied to the hospital at the moment. I may be able to alter my regimen a bit, but I don’t want to mess with it. I think that consistency is a major part of chemotherapy and I want this protocol to work for me for the foreseeable future. My foreseeable future is shrinking every day. That’s fine. That’s life. It’s interesting as I watch myself go through what little is left of my life, the recognition that my energy levels are dropping fast and that I can’t do things I recently took for granted. I have no regrets. I understand evolution and the need for death. I’ve played my part and will continue to play my part until there is just nothing left of me.

July 20th, 2022

Yesterday was a day filled with anxiety and doubt for me. A new chemo regime is always stressful. Will it work? Will I experience nasty side effects? Is this my last kick at the can? So many questions.

Thankfully, the crew of nurses and support staff at the Cancer Care Centre are amazingly calm and systematic. They patiently answer all of my questions, and this time around I had lots of them.

My infusions of carfilzomib are just a half hour long compared to one and a half hours for Daratumumab in my last protocol. However, for the first three weeks this time around they have me stay for an hour after my infusion for observation. That’s a good move because anything new like this is cause for caution. We were out of there by three thirty. Still, It’s an afternoon a week, and I need to be close to the hospital. No travel abroad, that’s for sure. I’m fine with that. Not much interested in travel right now in any case.

One thing I’ve noticed since I’ve been off of Dara and lenalidomide is that some of the symptoms I’ve been experiencing around my face seem to be attenuating. I can now feel my lips coming back online and my eyes don’t feel as puffy and buggy-outy as they have been for some time now. Maybe, just maybe, I’ll feel a little more ‘normal’ now. I hope this trend continues. The sensation around my eyes is particularly disconcerting. Anything to relieve that is good news. I’m feeling optimistic about carfilzomib but there’s a ways to go yet before we have any sense of whether or not it’s working to keep me alive.

I sleep well these days. That’s great. Of course, dexamethasone will mess with my sleep. I expect that and adjust as needed. It means that I may just read a little longer after I go to bed or wake up later and need to read a bit again before I can get back to sleep. I’m reading Agatha Christie at the moment. She’s such a good writer. There’s lots of murder and mayhem in her books, but some great problem solving too. Poirot and Hastings are principle characters in many of her books. Their interactions create a wonderful backdrop for their crime solving endeavours. Hastings is a great foil for Poirot. He’s not too bright but he is willing, and enthusiastic. The books do a much better job that the television adaptations of Christie’s work in terms of the dynamics of the Poirot/Hastings relationship. Read on. I paid one dollar on Amazon for all of Christie’s work on Kindle. What a deal.

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Just a note to end this post thing:

The fact that we are creatures of habit will be our downfall as a species.* We can’t seem to kick habits we know are bad for us. We know that fossil fuels are in the process of polluting the planet to such a degree that we may very well not be able to reverse the process. The pollution is what is killing us, not the fossil fuels themselves. We keep driving our cars and trucks. That’s a habit hard to kick because we also have a habit of spending money, and we have to get that somehow. Working for others (employment) seems to be the main way we do that, but contract work is also quite common. Employment is a relatively recent way of organizing labour. I wonder how much longer it will last. What I can guarantee you is that it will go the way of the dodo bird just as everything else does.

One huge issue we face is the generational lag that dominates our lives. We tend to think that we can live the way our parents and grandparents lived. We buy big fishing boats and huge RVs to wander around the oceans and roads like the 20th Century had never passed. We all want to live in detached single family houses (around here at least). Well, our parents did it, why can’t we? Maybe it’s because fish are disappearing at an alarming rate and gas is so expensive and polluting. But we’ll carry on because that’s what we know. We do feel anxious about it. That anxiety sometimes gets squished out of our minds in strange ways such as in ‘freedom’ convoys and ridiculous conspiracy theories. Oh well, steady as she goes. We all get to the wall sooner or later.

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*All animals are essentially creatures of habit. We all develop habits of life, some learned, and some tropismatic. We cling to them as long as we can. So it goes. It works as much for bees, chickens, and elephants as much as it does for humans.

#78 LIFE vs My Little Life

[I posted this in February, 2021. I’m re-posting because I think it expresses how I’m feeling right now about life and death. I will follow up with another commentary in a couple of days if all goes well.]

LIFE in capital letters is life writ large. It governs all manifestations of individual life. It goes on merrily as individuals live and die generation after generation. Ironically LIFE needs death to make more life. After all, we eat dead things, don’t we? Of course all plants and animals follow the same pattern. They come and go, often by being consumed by other living things. It’s almost March and the property here is getting ready to burst into life after the long period of die-off and dormancy that is winter. Flowers are appearing even with freezing temperatures.

The early ones are aconites, snow drops, early crocuses, and maybe violets. They express life briefly then give way to the grasses, the ferns and the flowers of spring. The pear, apple, plum and cherry trees will soon display their flowers in preparation for the fruit that will follow as long as the pollinators do their thing. The birds are into mating season and we’ll soon have baby robins, finches, nuthatches, flickers, thrushes, jays, hummingbirds, and chickadees hassling their parents, fluttering their wings and demanding food.

The sun is shining right now. It wasn’t supposed to according to the weather forecasters, but there ya go. Living and dying under the sun. That’s what’s going on. My adult life has been informed by the scholarship of life and death, that is, of life and death as considered by philosophers and scientists. The thought of my own dying hasn’t occupied very much of my time except when my mother, father, and sister Denise died, and then only briefly. Being diagnosed with multiple myeloma, a cancer that is incurable but treatable, changed all of that. Myeloma kind of sets the stage for end-of-life considerations. There’s no escaping myeloma’s trajectory. It will kill me eventually if I don’t die of something else first. Now, I have a hard time not thinking about my dying.

For most of my teaching career I used Ernest Becker’s work (The Denial of Death, Escape From Evil) to discuss the role of the fear of death on our cultural institutions. The fear of death and the promise of immortality and their overriding presence in institutions such as patriarchy and misogyny have shaped our social relations and created the conditions necessary for human contest and eventually homicide on a grand scale and war.*Related to our fear of death is our propensity to cut deals with deities. Humans have invented thousands of gods (and related semi-gods or supernatural entities) over the millennia. We assign responsibility to those deities for natural disasters, crop success or failure, floods, earthquakes, volcanoes, and the like. We even put faith in God for winning a football game or a war. We barter with the gods. We make sacrifices. We tell the gods: “Look, we are sacrificing this young woman for you by throwing her into this volcano, now you must reciprocate by ensuring our crops grow well next year.” A life bartered for more life. That’s largely the story of countless religious (and political) invocations over the millennia. Priests and politicians constantly urge us to make sacrifices so that the future will be better.

Modern medicine is an elaborate institution for the denial of death. It’s all about ‘saving’ lives, and it’s willing to go to extreme measures to accomplish that goal. Of course, ‘saving’ a life means little more than postponing a death. Obviously, I’m personally invested in modern medicine and pharmacology. I’m hoping that chemotherapy and radiation treatments will buy me time, effectively giving me more life and postponing my death. Chemotherapy and radiation treatments are not cheap. Just one of the drugs I’m taking will cost over $100,000. One of the pharmacists at the pharmacy in Victoria that dispenses the drugs I use told me over the phone recently that they have some million dollar patients out there, patients that have used these drugs for many years. I attend the Cancer Care Centre at the local hospital and I’m impressed by the technology and the expertise of the many staff nurses and doctors that work in that facility. That can’t be cheap either.

Modern medicine will go to great lengths and expense to treat patients hoping to extend their lives. It must do so otherwise it fails in its sacred mission to safeguard life and battle death, the ultimate enemy. As Becker notes, in our culture death and disease are the twin pillars of evil. Disease prevents us from enjoying the pleasures of life while death cuts them off summarily.

So, we are willing to invest a great deal to save an individual life yet we are also willing to gleefully pile corpses in great heaps during war or in the context of ethnic cleansing, that vile excuse for murder, rape, and pillage as in Rwanda, 1994, or in any countless examples of such celebrated mass murders. We gladly kill for US, for our people because THEY(the enemy) are obviously responsible for our misfortune and distress. If we eliminate THEM our problems will be solved. That is the big lie. As Becker notes, we need a THEM with whom to enter into contests to show our prowess and to show our God (gods) how powerful and deserving of eternal life we are. Why do we spend so much time, energy, and money on organized sport? Sports reflect our constant need to show how deserving we are of life and more life. We win, we go to heaven. The gods are obviously on our side. We lose and we face shame and rejection. This analysis can easily be applied to American politics now too.

I’m rambling now. I guess I’m trying to avoid writing about the finitude of my life, my little life. In the face of LIFE and its overarching grip on the process of life and death, my little life doesn’t amount to much…but it’s all I’ve got really. Maybe I can celebrate my insignificance. Maybe I can celebrate the entirety of my life from beginning to end. In a way end is as necessary as beginning in the scheme of things. Let’s see what I can do with the little bit of life I have left.

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*The need for an opponent or an enemy (THEY) is based on our need to prove our worthiness in competition for the good things in life and for eternal life. The winner takes all! Very early on in human history, tribes split in two called moieties so that there would be contestants to beat proving the prowess of the winners and their qualifications for immortality.

Myeloma and Pernicious Anemia: My Constant Companions

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.

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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.

Ant Under Glass. Should I Kill It?

I’m finding it fascinating how I’m so unable to write at the moment. Well, of course I can write, but I’m flummoxed when it comes to writing a coherent blog post. My age may have something to do with it, but there’s more to it than that. In the past couple of weeks I’ve started writing a blog post four times and for pity’s sake, I can’t complete even one. I guess I’m losing it. That’s not something I want to accept, but as we get older we all lose multiple abilities. It’s inevitable. Eventually we lose all ability. That’s when we die. Dead people don’t have abilities. 

In some ways, I think I’m getting gun shy. People are dying all around me and I’m just here waiting for the sniper to pick me off. I’m keeping my head down, but that strategy will only be good for a time. The Sniper in Charge (SIC) will find me. I have no idea how long it will take for her/him to find me, but it will happen. That has me distracted, very distracted. You may find that this blog post reflects that distraction. It’s anything but coherent. But here goes anyway.

I learned the other day from a very young blogger and her father that mindset is everything in life. To some extent I agree. It’s self defeating to go into a project with the attitude that “I can’t do that.” Of course most of us can do that. Yes, we can. But that attitude is contingent on age and other characteristics we have that may make it impossible to have a ‘can do’ attitude. No matter how much I may want to, making babies is not possible anymore for Carolyn and I. We are both beyond that project. 

The young person I’m referring to here is female. She and her sister operate a small sawmill as part of the family’s logging, lumber, and firewood business. They are both still teens and are very active in life outside of their work. In many ways, they are exceptional. They work in a family business. I don’t know how common that is these days but they may very well be the only young women in North America operating a sawmill of any size. Most people would consider that Man’s work. Her father declared in an interview she did with him in a recent blog post that they come from a Judaeo-Christian tradition and are actively Christian, in that they pray to God and all that. That fact gives them access to a whole community of like-minded people giving them wide acceptance in the community for their business and other activities. That’s just life for them. I’m sure they don’t see their faith and status as God-fearing White Folk giving them any kind of advantage in life. They would argue that they have just made the right decisions in life and people who make the right decisions in life create advantage for themselves by their very actions. There are various interpretations as to the accuracy of this kind of view, but it seems to work for them. It doesn’t work for a very substantial part of the population as sociology has clearly demonstrated over decades of research. 

Well, I guess mindset is important for me too. I can either whine and complain about the fact I have a cancer that won’t go away and will eventually kill me, or I can just get on with things and ignore my ultimate demise. I’ve commented on a recent post that death is akin to a wall. I see it clearly on the horizon, but why focus on it? Actually, it’s hard not to focus on it, but it doesn’t make sense to do nothing else. It certainly is distracting, however. 

I just captured a carpenter ant. I’ve got it on my side table under a shot glass. I can observe it moving about. It really wants to get out of this predicament and constantly looks for ways out. When I tap the glass it goes absolutely still. It’s a winged ant which means that it is at a stage in its life when it is bound to search out a new home. At this time of year they come out of the woodwork, literally. This ant seems very confused. This small prison it’s in is thwarting its destiny, which is, along with its buddies, to eat our house, which is made of wood, so lunch is served. However, I’m not particular enamoured with its destiny because we have conflicting interests. So, what should I do with this ant? I could easily kill it, or keep it imprisoned until it dies, or I could release it so that it can start munching on my house. Even if I release it outside, it’s still liable to find a spot to have a nibble. Obviously it cannot eat us out of house and home, but we know from past experience that it can, along with its buddies, cause a lot of damage. So what do I do? 

Help me out here. What should I do?  

Ant Under Glass

One Step Forward and Two Steps Back

Sometimes I think that it would be good if life were simpler. For me, it’s anything but simple. Maybe my expectations are too high. Maybe I’m not being realistic. Maybe if I relaxed a little, all would be better. Maybe. Yet, the complexity just seems to expand, to encompass everything, no matter what I do, or don’t do. 

I’ve been off chemo meds for about five weeks, and I have until the end of March before I go back on them. At least that’s the current plan. There was never a plan for long-term withdrawal from my chemo meds. I haven’t had my blood tested for a few weeks, and it will be another three weeks before I get tested again. I’m of two minds about that. It’s quite possible that the bloodwork will show that myeloma has again taken up full-blown residence in my blood and bone marrow. It may also be that it shows that I’m still okay. It’s always a crap shoot and somewhat tense for that reason. 

More concerning for me is the fact that since my withdrawal from hydromorphone I’ve been in a lot of pain. It hasn’t attenuated much at all. I’ve been able to walk a bit two or three times a week, but any walking I’ve done has been painful. I generally walk around two kilometres, and that takes me half an hour. Not a blistering pace. 

Because of the incessant pain I’m in I’ve had to backtrack and reconsider my decision to cease taking opioids. I took a slow release capsule this morning as a test and I have felt some relief. It may be that I’m dreaming in technicolour if I think that I can manage without pain meds. 

Speaking with my GP/oncologist last week was enlightening. He doesn’t think that the pain I’m having has anything to do with my B12 deficiency, opioid withdrawal or myeloma. He thinks it’s attributable to chronic pain, something I’ve experienced for decades. (I’m not sure I completely agree with him on that.) Thinking back over the past thirty years and it’s clear to me that I’ve had periods before I was diagnosed with myeloma or pernicious anemia when I’ve experienced extreme pain and other very strange symptoms like having a yeasty odour and having my skin welt up after drawing a dull object over it with not a lot of pressure.* In the mid-nineties I had a period of debilitating fatigue to the point where I could barely function. I was also depressed at that time, with good reason to be. 

The chronic pain that I’ve experienced throughout most of my life is associated as much as I can tell, with the consequences of surgeries I’ve had. The two main ones are a laminectomy (disc removal) and a nephrectomy (kidney removal). As well, I’ve had the odd accident on my bike and some running-related injuries. My neck has been a source of a lot of pain over the years brought on mainly by years of hunching over a computer terminal. I envy people who go through life with very little or no pain. There aren’t many of those in my family. I have siblings with MS and fibromyalgia. I have quite a few relatives with autoimmune diseases. It seems to run in the family. We’re also a long-lived bunch. That might be good, but it might not be so good too: all the more time to suffer from debilitating pain. 

The biggest and most distressing challenge I face right now is the weakness in my legs but I may get control over that with a low dose of hydromorphone and gabapentin. I need to move around. That’s a prerequisite for continuing to be able to move around. Being sedentary breeds inactivity and makes it harder and harder to get any exercise. Exercise hurts! Walking two kilometres brings on a lot of pain. Damn! 

And with the price of gas now, I think driving may be an even bigger pain in the ass than I’m feeling now in my ‘lower’ back. I feel that driving into Courtenay for a walk on the River Walkway is a bit frivolous when gas is $2 a litre. I can always walk around Cumberland for free. 

Tomorrow should be better for me in terms of pain. I expect I’ll walk a couple of kilometres tomorrow morning. The weather is supposed to be good. From Thursday on for at least a week it’s supposed to be rainy and cold. No reason not to walk, but it is less pleasant and I like pleasant these days. 

If you didn’t notice, and to end today’s musings, the title of this post works for some things, but not for life itself. Life never goes backwards, no matter how much we wish that it were so, no matter how many anti-ageing creams we use. 

My next post will be on why the penis and clitoris are such wondrous things and why they have so much in common. 

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*This is the strangest phenomenon. I would drag the handle of a kitchen knife over my arm and it would welt up for maybe three hours afterwards along the path of the draw. Has that ever happened to you? I’d like to know if you’ve ever experienced this. 

I’ve struggled a lot lately about whether my glass is half full or half empty. I’ve lived seventy-five years. Is that a good thing, a bad thing, or just a thing? 

Whatever. 

Lately, I’ve often mused nostalgically about my past. My present is not what I would have it be, but I’ll write about that below.

For now, I want to write about moments in my past that were particularly instructive for me. You all know that I have cancer. That’s not news. However, some of you may not know that I was diagnosed with kidney cell cancer in 2002. From what I was told, I had what they call a lesion on my left kidney. In this case a ‘lesion’ means a fairly large growth protruding from my kidney. They were loathe to do a biopsy because any puncture of the lesion or any attempt to remove the growth by aspiration was going to spread the cancer far and wide. So, they scheduled me for surgery. I was fortunate to have a very good local urologist perform the surgery with my GP attending (he’s an internist as well as a family physician).

My Nephrectomy

When my time came for my nephrectomy (removal of my kidney) on February 17th, 2002, Carolyn drove me to the hospital early in the morning and left me there to find my way to the surgical unit. I wasn’t there long before they ushered me into the operating room. I was set at ease to see so many people I knew there, including a nurse who was a former student, my GP and the surgeon. I didn’t know the anesthetist although I had met him earlier in the hospital for a pre-surgical interview. 

So, taking my kidney out would be a straightforward affair if you knew what you were doing! Thankfully, the urologist knew what he was doing. In order not to spread the cancer far and wide, he opted to open me up using a 35 centimetre incision between my ribs on underside of my left arm to my midsection but lower on my body. They essentially cut me in half so they could gently lift my kidney out of my body without messing with the surrounding tissue and risking metastasis. I heard later that my GP was humbled by the process of cutting me in half and putting me back together. 

After the kidney was removed and they made sure they hadn’t left anything in there that shouldn’t have been there, they stapled me shut and sent me off to a room upstairs. I was there for a few days. I had a morphine pump to make sure I had no pain but it did have a governor on it so I didn’t overdose. That was kind of them, I think. 

I went home after six or seven days. We had just moved to Cumberland on an acre. There was lots of work to do. I couldn’t do any of it. Thankfully a number of my family members came over. There was lots of help and Carolyn was healthy, as she still is so I watched as my family and some friends helped us move in and get the yard together. 

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Visit to Cancer Care Centre 

We saw my local GP/oncologist this morning. These meetings are always interesting. I’ve been off chemo for a month and I’ll be off again for another month so that we can more properly assess how I react while not on the chemo meds. I’m also off hydromorphone (opioid), having gone through the nasty process of withdrawal over the past few days. I’ve never taken a very high dose of it, but I have been on it a long time. That makes it a bit of a challenge to stop taking it. I’ve also cut way back on gabapentin, which is a drug initially used for epilepsy, but has been used for all kinds of ailments since (maybe overused). I really have no idea how it’s affecting me because I have had such a mix of medications over the past couple of years that there’s no way I can tell what med is having what effect. It’s supposed to help with my peripheral neuropathy. Maybe it is. Maybe it isn’t. I really don’t know. It’s just a bit confusing and frustrating. 

I was in the Cancer Care Centre at the hospital this morning, as I said, to meet my GP/oncologist, and I saw a few of the usual suspects getting treatment. There was an older woman (probably a bit older than me) getting an infusion in Chair #4. I’ve seen her a number of times before. This time she was with her husband (I presume) who sat in a chair beside her. We nodded to each other. A young woman came by us as we waited to see the doctor. She was in Chair #3 I think. She was dragging her IV pole along beside her as she made her way to the bathroom close by, something I’ve done many times. IV poles, with bags of meds hanging from them with a line entering the arm somewhere, are on casters but they still rattle away as they are dragged along. I thought to myself: “This is my life. I share it with people I don’t know and some I do know, people who share my struggle to one extent or other. What we share is cancer.” But we also share the care and love that the staff gives us. Notwithstanding, every one of us will die. We may survive a year, two, ten, or twenty, but we must die. I’m not complaining about that. It is what it is.

I’ve spent a good part of my life studying life and death. I’m a sociologist, but I’ve not contained myself within that discipline. I’ve struggled to see the big picture of life on this planet and how life cannot exist without death. I know it’s something I’ve brought up before, but it’s always on my mind. 

We’re coming on to spring. My favourite season. Plants spring up everywhere. They count on the decay from previous years to fuel their growth. Life is not a cycle. It’s more like a spiral, with an inevitable end. To think of the seasons as cyclical is a mistake, a comforting mistake, I guess. I’m thinking we have a built-in biological aversion to death. From what I’ve observed, we share that aversion with most other animals. Life is the big draw, death and disease are the ultimate enemy. Our whole culture is built on that false premise. Silly us. 

This spring for me is not like the spring of my tenth year, nor of my fortieth year. I’m hoping this is not my last spring. I’m thinking it won’t be, but the future is promised to no one. 

February 18 Update

[I’ve written about some of the issues I’m having with myeloma before, many times. Because it’s such a presence in my life I can’t help but write about it often. Sometimes, I write about it to provide an update on my treatments and side effects. That’s what this post is about. It’s somewhat technical, but you don’t have to know everything about the drugs involved to understand the thread of my story.]

I sit here in my chair warmed by our new(ish) mini-split HVAC that lives on the wall up to my left with it’s companion outside, visible from the large window just behind me. It’s just after nine in the morning and it’s cold today but clear with the temperature hovering around the zero Celsius mark. We have the wood stove on too because the electric heat just doesn’t cut it when the temperature gets near or below zero. 

Myeloma is always at the forefront of my mind, but now pernicious anemia, and my opioid dependency are butting in and taking up some space of their own in my consciousness. So, in this post I’ll discuss the challenges posed by these issues for me every day. 

I’m so conflicted these days I’m almost completely immobilized. My myeloma saga is putting me in a space where I’m not sure what to think. I’m off my chemo meds for at least one cycle, approximately a month. My local oncology GP as well as my consulting oncologist in Victoria can’t detect much myeloma protein in my blood, if any at all, so it seems logical to give my body a break from the meds. Fair enough. However, for the last 7 cycles the combination of chemo meds (lenalidomide and dexamethasone) along with the monoclonal antibody Daratumumab have effectively erased most, if not all, traces of cancer in my blood. I’ve come to appreciate the protection I get from these meds even though they produce some nasty side effects, peripheral neuropathy** in particular. Still, I know that myeloma will always return. The last time I went off chemo meds was some time ago. I was taking a lenalidomide* based cocktail at 10 mgs per cycle but then I got a severe abdominal rash and had to shut that down. 

After that, I was moved to a drug called bortezomib, along with dexamethasone, and cyclophosphamide. The bortezomib (Velcade is its trade name) had some horrendous side effects for me, threatening to put me in a wheelchair or worse. I quit taking these meds out of desperation, but found that soon my paraproteins were increasing rapidly in my blood. That scared the poop out of me. Time to make another move. 

That’s when I was switched back to lenalidomide (Revlimid is the trade name) but at a minimal dose of 2.5 mgs along with 12 mgs of dexamethasone and an infusion of some 500 mls of Daratumumab per cycle.  That’s the cocktail I just stopped taking. Next month I see my local oncology GP for another assessment. It will be interesting to see what my bloodwork reveals. I’d be lying if I said I wasn’t worried about it. 

To complicate matters, I’m trying to wean myself off hydromorphone (an opioid) and gabapentin , both are widely prescribed pain relievers. Opioid dependency is no picnic. I was first prescribed hydromorphone when I was diagnosed with myeloma in the fall of 2019. Since then the goal has been to fine tune my doses to get the maximum effect while leaving me more or less sentient. It’s been difficult. For some time now I’ve been taking two types of hydromorphone, a slow-release 3 mg capsule and a 2 mg ‘breakthrough’ dose. I’ve taken one 3mg capsule in the morning and two in the evening. Now, as I try to get off this medication, I’m restricting myself to one 3mg in the evenings and none during the day. Last night I thought I’d be tough and not take any meds at bedtime. Well, I soon got schooled by hydromorphone for trying to back off too quickly. By 11 PM I was downstairs into the medicine shelf getting a 3mg capsule to take. The thing is I was not prepared yet for a full withdrawal. My body let me know very quickly. The pain in my back returned with a vengeance, and I couldn’t stand to have anything against my skin. I was completely distracted by itchiness all over my body. Thoroughly unpleasant. I expect that as I restrict my intake of hydromorphone more and more, that I will have fewer pain issues. Ironically, opioids can contribute to pain, especially during withdrawal. 

The reason I’m trying to get off hydromorphone is because of the success we’ve had in dealing with myeloma. I’m thinking that with my myeloma symptoms under control, I may not need as much pain relief as when it was in full bloom. 

As far as the pernicious anemia is concerned, I should have my B12 up to acceptable levels. I’ve injected B12 (cyanocobalamin) eleven times now in the last six weeks. That should do it. However, it will take up to six months before I experience any kind of improvement to my health. It would be nice if I only had one issue to deal with but I think I have things more or less under control for the time being. 

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•For a list of common side effects of lenalidomide check out this website: https://www.drugs.com/sfx/revlimid-side-effects.html

**I am a member of a myeloma support group. We had a Zoom meeting last Thursday. We are all at different levels of treatment and on various medications but we pretty much all have one thing in common: peripheral neuropathy. The neuropathy in my left hand is now starting to interfere with my ability to type. Given that I write a fair bit, that’s not at all welcome.