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.

Cancer and self-absorption.

Well, it looks like spring has finally sprung. The temperatures are rising and we now look forward to sending less of our pension funds to BC Hydro than we have all winter.

The wisteria is now showing signs of life. We wondered lately whether or not it was still alive. Apparently it is alive, just taking its time waking up after a very challenging winter sleep. It’s warming up with temperatures consistently in double digits, but the clouds seem reluctant to part. This past weekend was gorgeous with a lot of sun. This coming week promises to be cloudy and dreary. Wednesday, tomorrow, is Carolyn’s 70th birthday and I have an appointment with my GP/oncologist at the hospital. At least it’s at 9:30 in the morning so early enough to allow us to get on with things for the rest of the day. Carolyn does not want to miss her usual daily ten (or longer) kilometre hike in the hills just up the road.

I’ve been thinking a lot lately about the reality implied in the title of today’s post, particularly the self-absorption part. Truth be told, I might be rightfully accused of being self-absorbed for most of my life. In some ways, I think, it comes with the territory. Writing is an activity that requires a lot of concerted attention and effort. As a college instructor I had to do a lot of reading and writing and for one stage of my career I produced over two hundred and fifty tele courses on the Knowledge Network for North Island College. In order to be able to produce the expected results I had to spend a lot of time in my head and in my office either preparing lecture notes, getting props or websites together, or marking assignments.

It may be an excuse to suggest that self-absorption is a consequence of work requirements, but I think that there is definitely a need to be alone to do much of the work I was expected to do. That may be interpreted as being distant, or uncommunicative, or selfish, depending on one’s perspective.

It’s a truism to suggest that living with others in a family requires at least a modicum of communication and interaction between members. Family implies intimacy and intimacy implies connection. Connection requires time together for the parents and for children. Some families are more closely connected than others, but some families are quite content with very little time together.

I can’t speak for my family and I surely won’t put words in their mouths here. However, I know that at times there were expectations that I spend more time with the family. I’ve been (rightfully) accused of being in my head too much and not being available to the family for conversation or whatnot. Some people would interpret my behaviour as self-absorption. Fair enough.

That said, as I work through my life with cancer, I find myself increasingly absorbed with what’s happening inside me and just how long I have left to live. I know a number of people who have died recently of cancer. Some have died soon after diagnosis. I don’t know of anyone who has died of myeloma, my flavour of cancer, the one that is now considered, like diabetes, to be more of a chronic illness than an ambush killer of sorts. I know a few people who are sick with myeloma, but none who have died from it.

As far as the people who have died of cancer are concerned I wonder how many of them turned inward as death got closer and closer? I have no idea, but if you do, I’d like to hear about it. Our caregivers may be the best people to address the veracity of my observation that dying forces us inward.

Caregivers have a thankless job. They may love the people they care for, but as people get closer and closer to death, they may withdraw more and more become increasingly unable to provide any kind of recognition or thanks for the care they receive. It may be that dying is a process of increasing self-absorption. I don’t know. I haven’t done the research.

Some people have done some thinking about this. I’m not the only one. It may not be research in the technical sense of the term. Actually, it might best be termed thoughtful investigation. I tend to be strictly scientific in my views on the dying process but I have come across very little in the way of a psychology of dying. There are some sources out there, but not many. Elizabeth Kübler-Ross (1969) gets a lot of attention for her work on the stages of grief, et cetera, but I find that her work is less scientific than grief and hospice counselling. It would not be impossible to do scientific work on my hypothesis that we tend to withdraw from society the nearer we get to death, but it wouldn’t be easy. It sure isn’t in my future.

So far, it may be just a feeling I’m having, or a conclusion I’ve come to with limited experience, but it makes sense to me that we would tend to withdraw as we get closer to death. Death, or course, is the ultimate withdrawal, so leading up to it must produce some stages of withdrawal or increased self-absorption. At least that’s what I’m thinking, and I’m sticking to it.

Our Vagarious Lives

Our Vagarious Lives

Ah, the weather is still out to lunch. We are at least a month behind in the garden. The wisteria is not showing any signs of blooming. Just sticks up there. Last year at this time it was in full bloom with a small complement of leaves coming forth. Some plants, notably some ferns and, thankfully, the garlic seem to be quite happy. 

Garlic Bed

So is the Japanese Butterbur. Within a month it went from three or four buttons at the bottom of the garden to what looks like giant rhubarb. The leaves are so heavy they fall back on themselves.

Spring time has always been considered a time of joy, growth, and possibility. And so it is. Like a baby born with all the potential of a lifetime ahead, the garden is looking to the future of the rest of the spring and the full delight and warmth of summer. Fall and Winter come inevitably. They tease us with beautiful garden colours and the bare branches of winter which then carries on for what some of us think is way too long. Spring does finally come around again and soothes us with hope. We commonly call what I’m talking about here as the cycle of the seasons. Of course, it’s not a cycle. It appears to be, but last spring is not this spring. It might be more accurate to talk about the spiral of seasons.

Like one year in the vast scheme of things, a human life is that time between our birth and our death. It’s finite. This is not a fact we find comfortable because, gee, we live through many springs, summers, falls, and winters. We are not just one-year wonders. That’s true, but the illusion of the cycle of seasons should not fool us into believing that this thing goes on forever.

To carry on with the analogy of the garden and human life, for me, winter is not coming, it’s here, even during the month of May. My leaves are falling, my bark is dry and cracking. There is no moving forward to a new spring for me. If that were to happen, it would defy all evolutionary logic. No, I have to be satisfied with my life as it is, and I am, even if I am in my ‘sunset’ years. I have an intelligent, talented, and beautiful wife and my daughters have taken after their mother. I have a loving family, and I live on a gorgeous garden thanks to Carolyn’s magical touch and hard work.

There’s one thing I agree with Sadhguru* about and that’s the idea that we had better enjoy life while we can, because we’ll be dead for a long time. Of course, many people are unhappy with the coming of winter, period, and they deny it by vacationing in Mexico or somewhere else near the equator or on the other side of the planet where summer coincides with our winter.

For a time as I read Sadhguru I had the sense that he really understood Evolution and Life, Science even. For example, when he argued that we don’t die, I thought maybe he referred to the (scientific) notion that every atom that makes up our body has always existed and always will. In that sense, ‘we’ are immortal. From my perspective, our consciousness is toast, but the little things that together constitute our bodies carry on. There is some disagreement about this, but the cells that make up our bodies get replaced at various rates for a very rough average of every seven years or so in total. Another strange factoid: we very likely breathe the same air molecules that Caesar exhaled during his last breath. Cool. But Sadhguru didn’t go there. He still insists on the survival of consciousness.

So, we exist at many ‘levels’: atomic, molecular, cellular, and organic. All of these together make it possible for us to have consciousness. Once our physical platform is gone our consciousness follows. I’d be glad to change my mind about this given scientific evidence to the contrary, but that is very unlikely.

So, what’s vagarious about our lives? Well, the dictionary defines vagarious as: “erratic and unpredictable in behaviour or direction.” Boy, is it ever. One day I’m able to walk long distances with Carolyn. The next day I can barely walk at all. I would not have predicted that. Cancer and old age gang up on me and don’t back off, ever. That’s life. There’s a slew of things I used to do effortlessly. Now, every once in a while I still think I can do things but after trying for a bit, I realize that I can’t go back in time. The trick for me is accepting my new age-appropriate capabilities. I’m living the life of a seventy-five year old, not a fifty-five year old. I must accept that and not sweat it. I’m getting it. It’s a process. It’s a good thing I have Carolyn and my family to remind me from time to time of my limitations. I need reminding.

I’m quite fond of metaphor and analogy as you are probably aware by now. Well, let’s pull out another one. Cancer is like cats as they play with us mice. There are many flavours of cat, some hunt mice and kill them quickly. Some play with their mice prey for some time before losing interest and finally killing them.

I have multiple myeloma. My cat analogue is one that likes to play with its prey. Little shit. It bats me around and chases me under the dresser where I get a bit of a respite knowing full well, Mr. Cat Myeloma is just out there, waiting for me to lose patience and make a run for it. I have absolutely no chance of escape. So be it. That damn cat will get me, no doubt, but not yet.

I love the garden. Carolyn has done an amazing job cultivating it, encouraging it, and never losing faith in it.

You never know, though. I may get it into my head that I can do things again that I used to do effortlessly. I may try. I can still handle a chainsaw. I got mine started a few days ago. I need to sharpen the blade. I think I can do that. Time to find out, but I do need to be cautious, now don’t I?

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*I wrote about Sadhguru on my May 4th post: https://rogerjgalbert.com/2022/05/04/aw-come-on-lets-talk-about-death-some-more/

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. 

Ho Hum.

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.

And the beat goes on…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

# 87. The Last Post in a Series.

Last Friday morning, we (Carolyn and I) had a meeting with my oncology consultant, Dr. Nicol Macpherson, at the BC Cancer Agency in Victoria. We meet with the oncologist in Victoria maybe three times a year. The rest of the time we have a local GP who specializes in cancer treatment. Our local GP oncologist is Dr. Bakshi. We’re quite happy with the service we get from the BCCA and from the local staff of nurses and Dr. Bakshi at the Cancer Care Centre at the Comox Valley Hospital. The meeting with Dr. Macpherson this morning was especially eventful. 

I knew that I was doing well with the chemotherapy and monoclonal antibody treatments I am getting. I started my current regime in mid-February of this year and the progress I made in a month was nothing short of stunning. We keep an eye on my frequent lab tests by logging into an Island Health website called MyHealth. On that site I get to see all the results of my lab tests, imaging results, and upcoming appointments. Obviously, we need to know what we’re looking at when we check out my blood serum profile including my paraprotein and Kappa Free Light Chain numbers which are of particular interest in my case. After some research and consultation, we now have a grip on what the lab results mean for my myeloma activity although the information is always incomplete and must be interpreted fully by someone who has better access than we do to the numbers. That someone is Dr. Macpherson in Victoria although Dr. Bakshi must also have access to my numbers, and my GP is probably copied on all the documentation coming from the hospital here and from Victoria. Now for the fun part:

So, Macpherson told us this past Friday morning that there is no trace of myeloma protein in my blood at the moment. No trace at all. He expects that that will be the case for the foreseeable future, years probably. 

We have been hoping for this result, but we had a bit of a setback late last year and early this year so we were doubtful that the zero myeloma protein in my blood would be an ongoing condition. It now appears that it is. The next few weeks will give us a definitive answer, but the situation looks very good. I have to keep reminding myself that myeloma is incurable but treatable. At the moment I’m in full remission. Inevitably the myeloma will make a comeback. We don’t know when, and that’s the frustrating part of this narrative. Still, we are in a good place right now and probably for some time to come. 

The situation with my cancer being resolved for the time being, I’ve had to rethink the focus of this blog. I have published well over four hundred posts but only eighty-seven addressing explicitly my experience with myeloma. Given the current situation I’ve decided to close the series of posts dedicated to myeloma and open up the blog for other topics and commentaries on current affairs, life and death. I started this blog in 2012, the year I retired. That’s quite some time. Maybe I’ll aim for a thousand posts. There’s no purpose in doing so but I can set up an arbitrary goal if I want. Whatever. 

Sometimes I’m tempted to shut the thing down completely but then I get the itch to write a commentary about current affairs, to get something off my chest, or just to post pictures of the beauty that surrounds me on our property here in Cumberland. We’re approaching the summer solstice. This time of year often brings unsettled weather and exponential growth in the garden which actually needs more heat and sun to ripen fruit and get the lilies to bloom. The lilies are coming up now, slowly, but soon they will colour the garden with splashes of red, yellow, orange, and white. The rhododendrons are still in bloom, at least some of them, but the dogwood and the wisteria have pretty much shed their blossoms and are moving on to create more branch and leaf structure. The weather prognosticators are suggesting that a warm, sunny trend is on the menu for next week. If that happens, we will again be able to sit out by the pond or on the deck next to the water feature there, drink tea and read. We will eat out on the deck again in warm comfort. 

Life is the weirdest thing, and I don’t mean just as it applies to humans. It seems a little perverse to me, actually. The whole thing does. The birth, growth, maturation, and then decay seem to be a waste of experience and a slap in the face to beauty which it prepares to annihilate in a short time in the last quarter of life. It celebrates renewal but only on the destruction of what went before. The death of one generation means life for the next one. For us humans the process of life is particularly insulting in that it promotes the growth and accumulation of knowledge, of piles of household goods, and property in general just as it prepares to shut it all down and make fodder out of it. Of what use is that? None that I can surmise. But, in any case, let’s not glorify usefulness. 

The concepts of use and purpose don’t apply to life or they apply completely to it. Death is necessary as a base for life. No death, no life. So, ultimately the purpose of death is to act as a basis for life. Life, in the spring, likes nothing more than a pile of shit or manure to drive new growth along. That may be true, but it doesn’t mean I have to like it. My death is not far off. According to the statistics, I have maybe five more years before I reach the average length of life in Canada for males. Given the success we’re having with chemotherapy and monoclonal antibodies I could just reach the average lifespan. Eventually, myeloma may well kill me, but whatever, something has to do the deed. I need to die, we all do, to make room for future life. Bring it on.

A picture containing tree, plant, flower, arranged

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A nice picture of white, red, and orange lilies to end with.

#79. My Numbers!

This is the post I’ve been looking forward to writing for some time now. It documents a radical improvement in my myeloma situation. Now, if only I could find a way to rapidly decrease the problems and pain I get from arthritis and degenerative disk syndrome, I would almost be back to a normal life. Of course, I keep forgetting that I’m 74 years old and that I’ll never be able to do the things now that I used to do just ten years ago. But enough grousing about my limitations, it’s time to focus on some recent victories that have everything to do with my numbers.

For me, the one thing that came along with the diagnosis of multiple myeloma or bone marrow cancer was (and is) an obsession and fascination with my numbers. I wrote about this earlier in a blog post on December 17th, 2019 (https://rogerjgalbert.com/2019/12/17/access-to-medical-records/). Now is a good time to revisit my obsession with my numbers because I’ve recently had some pretty spectacular changes in some of my critical numbers. I concur with Paul Kleutghen when he writes:”We (patients and caregivers) have all become so attuned to focusing on numbers that any excursion out of the “normal” causes worries and sleepless nights.”* I generally don’t lose sleep over anything, but, like Kleutghen, I am focussed on my numbers, and I get pretty upset if my numbers are going in the wrong direction or stand outside of the reference numbers.** Of course it’s an entirely different story when my numbers go in the right direction. Numbers are important to me and you’ll see why in this post.

My numbers refers to the lab results I get from frequent visits to the Vancouver Island Heath Authority (VIHA) lab in Courtenay, or to the hospital lab. As a regular thing I get checks of my blood, my white blood cells, red blood cells, monocytes, hemoglobin, neutrophils, eosinophils, basophils, etcetera. I also get regular tests of my kidney function by analysis of creatinine in my blood serum. (I have access to all my lab results through an online VIHA service called MyHealth.). By the way, a really good source of information about reading our lab results can be found here: http://media.myelomacentral.com/wp-content/uploads/UnderstandingYourLabResults.pdf.

Once a month or so I get tested for more myeloma specific indicators in my blood serum. These are paraproteins and free light chains, both kappa and lambda. Our blood has both Free Light Chains and Heavy Chains. These are simply descriptions of the organization of proteins in our blood serum. Without getting into too much technical detail it’s important to note that some myeloma patients are kappa free light chain myeloma patients and some are lambda free light chain myeloma patients. I’m a lambda kind of guy.

So, I went on a new chemo regimen in January. It’s composed of dexamethasone, a glucocorticoid, lenalidomide, a chemo drug (they’re not sure how it works) and Daratumumab, a monoclonal antibody. If your eyes haven’t glassed over yet from all the technical jargon I invite you to have a look at the table below I got from MyHealth. It refers to my Lambda Free Light Chains from June, 2020 to February 26th, 2021. It’s a very informative table. The red numbers highlight times when the lab results indicated that I had lambda free light chains higher than the reference range, which is conveniently given on the right in the table. You can see that from September 30th, 2020 until January 27th, 2021 that the myeloma was getting more active again in my blood, a conclusion supported by the redness of the numbers therein. Not only that, but you can see that the amount of free light chains in my blood was increasing rapidly during that time from 44.2 milligrams per litre of blood on September 30th 2020 to 201 milligrams per litre of blood on January 27, 2021, but in fact had been increasing from June 30, 2020. That was a very worrying trend because the more free light chains in my blood the sicker I get.

Then I started the new course of chemotherapy and the lambda free light chains in my blood went from 201 to 11.7 mg/l a number well within the reference range. That”s why I got so excited when I saw the ‘normal’ 11.7 mg/L on February 26th, just a few days ago. In my discussion with my oncologist in Victoria, he said that we shouldn’t expect to see any positive results for two to three months and here I went from a high of 201 to 11.7 in a month! Now, that is cause for celebration. It means that the Daratumumab is my buddy and is working better than expected. Hallelujah!

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*https://www.myelomacrowd.org/living-with-abnormal-free-light-chain-ratios/

**reference numbers are a range of numbers within which numbers should fit in a ‘normal’ person. Reference numbers are where the majority of people would fit in terms of their standing on any particular measure. It’s a range because there is understandable variation from patient to patient. For example for Kappa Free Light Chains the reference range is 3.30 – 19.40 mg/L.

#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.

# 66. Pain for Gain, Fall Colours in the Garden, and Under the Microscope.

Pain For Gain

Re: the art of tying knots on the scourge so as to experience the most exquisite pain so as to deny our bodies and bring us closer to God.

When I was twelve years old in 1959 my parents sent me off to a private Catholic boarding school in Edmonton, the Collège St. Jean. I boarded a CN train with some forty boys from British Columbia destined to make up a substantial minority of boarders at this school. No way I was going to be left behind. I’m sure I begged my parents to allow me to join my peers in Edmonton. The College was run by Oblate priests (Oblats de Marie Immaculée), a Catholic missionary order founded in France in 1816. 

In this post I don’t focus on my attendance at this school although that is a topic deserving of its own exploration. No. My interest here is to highlight aspects of the life and activities of one of the Brothers who worked at the College from its inception in 1908-11 until 1947, the year of his death. His name was Frère Antoine Kowalczyk. He was born in Poland in 1866, moved to Alberta in 1897 and died in Edmonton in 1947 after serving the College for some thirty-six years. During his tenure at the College he was one of two Oblate Brothers.

Oblate Brothers acted as custodians, gardeners and caretakers. They did the grunt work around the place along with a contingent of nuns from the congregation of Les Soeurs de la charité d’Evron who fed us, did our laundry (poor women), and looked after the infirmary. Oblate priests were our professors (with the odd exception) and served as the College administrators.

Brother Anthony (Frère Antoine) died in 1947, a few months after I was born so there was no chance I would ever meet him. The good Brother would not be alive to see the major expansion of the College in the 1950s, but the College did everything it could to keep his memory alive because Brother Anthony was special. Normally, he would have received a nice funeral and would be buried in the Oblate cemetery in St. Albert, not far from Edmonton, and then all but forgotten. That was not to be for Brother Anthony. Yes, he did have a nice funeral and yes, he is buried in St. Albert but he has not been forgotten.

Because of his exemplary life, Frère Antoine is being considered for sainthood and has been for quite some time. The local Catholics would love to have a real honest-to-goodness saint come out of their community. We all want our heroes. Brother Anthony was to become one of Edmonton’s Catholic heroes and saints-to-be.

I recall reading a number of extremely laudatory tracts about Frère Antoine when I was a student at the College and I still clearly remember the grotto that he built to the Virgin Mary which probably still stands next to the College’s administration building. Some of his personal effects were on display in the main College building. They are what interest me the most about Frère Antoine along with the efforts to have the Vatican declare him a saint.

The glass encased display of his personal effects included his rosary and breviary along with more mundane items such as his cassock, candle holders, and some tools. For me, the most striking item in the display was his scourge, the whip he used for self flagellation. When I first laid eyes on the scourge at age 12 or 13 I was astounded as to why anyone would want to inflict pain on themselves as Frère Antoine obviously had. How could that be? Pain was a bad thing, wasn’t it? Well, maybe not always.

Pain is important as a signal that something isn’t quite right in the body. People who cannot feel pain may hurt themselves in a myriad of ways without knowing it. The condition called congenital analgesia is extremely rare. Less rare is the situation in which people deliberately hurt themselves. People, mostly youths, cut themselves with razors, knives, and other sharp things for a myriad of reasons. I don’t think Brother Anthony whipped himself for the same reasons ‘cutters’ do.

For Brother Anthony, whipping himself or self-flagellation was a means of punishing or mortifying the flesh. Why? Because the flesh is weak now isn’t it? Succumbing to its many potential delights in eating, sex, and just plain moving is considered by Catholic theology as a (if not the) most important source of sin in the world. The seven deadly sins are, in fact, mostly about denying the pleasures of the flesh. After all, the flesh dies while the spirit lives for eternity as the story goes. Most religions in fact promote the spirit as the vehicle for eternal life. I guess it’s just an easy step from avoiding sin to actively ‘mortifying’ the flesh, that is to punish it physically for being the source of death.

But Brother Anthony wasn’t content with a wee bit of self-flagellation during Lent. He spent time with his scourge. What I remember of it, his scourge consisted of several leather strands with knots tied carefully at intervals to intensify the pain and help to cut the flesh. The story is that he whipped himself regularly as he fought with his devil flesh.

I refer to Brother Anthony here specifically because he is a flagellant of my past, but the institution of self-flagellation is not just a Catholic thing. It’s also a practice of Shia Islam and Judaism although in no religion is it standard practice. It’s generally practiced by the over-zealous as is certainly the case in the Philippines and elsewhere. Brother Anthony certainly was zealous and it strikes me that the aim to canonize him is partly based on his zeal.

Reading about the myriad ways in which people deliberately cause themselves pain has not led me to reconsider my attitudes towards pain. For me pain is not something I experience with joy. It is a reminder to me of the weakness of the flesh for sure and of my mortality. That’s fine. I accept that.

If there’s one thing that is common to all human culture it’s the denial of death, and consequently, the promotion of the spirit as the essence of being and as our way to immortality. That’s not a universal value to which I subscribe so my pain and I have to live with each other ’til death do us part.

Fall Colours in the Garden

Our garden is flush with colour from the earliest days of spring and well into the Fall. Now is the time for dying and dead leaves to put on a show, extending the dominance of colour before bare branches impart a new dynamic to the garden along with some evergreen trees and shrubs that are just that, ever green. Below you can see pictures of blueberry bushes in full Fall splendour along with some maples, red and Japanese, Virginia creeper, and sumac.

Under the Microscope

Nothing extra special about this set of images. The first one is of my blood. It’s red, not surprisingly. The blue is a photo of a rough blue paper. The other three are yellow and black. The multicoloured one is in fact black to the naked eye, black being the sum of all colours. The one with only red dots is a light yellow and the one with red and green dots is a darker yellow.