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?

__________________________________________________________________________________

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

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. 

_______________________________________________________

*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. 

_____________________________________________________________________

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. 

_____________________________________________________________________

•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.

75 UP

So, this post is about what’s up with me now. I’ve reconciled myself with the fact of my frailty, which I share with all living things. It stands to reason that my body is not as it was twenty or even ten years ago. All individuals of all species, plant and animal have a life course. We’re all born. Even trees, but some of those individuals die young (like the trees that are being cut in the hills above Cumberland), some trees live out what must be considered the outer limit of life’s potential, in the Carmanah Valley, for instance, no thanks to BC’s forest industry. Some of us humans die young. Some die hacked to death in a stupid race war in Rwanda in 1994. Others die horrible deaths in the ovens of Auschwitz. Still others, of all species, die of inborn problems, with their DNA or or whatever. In the end we are all frail, even the biggest and toughest among us, and vulnerable. For most plants and animals eventually, the soft, squishy material that we’re made of becomes increasingly brittle and inelastic as we age and approach our inevitable ends. My squishy material is definitely becoming worn out. It still has some bounciness in it, but nothing like it had years ago, and there’s no turning back. But on with the story.

Being one who kind of likes living (even given what I write above) I dutifully injected B12 into my legs (alternating left and right) once a day for a week mid-January and since then I’ve injected once a week.*That should replenish my B12 levels and keep me going. It may take some time for increased amounts of B12 in my blood to make a difference to my energy levels, but I can be patient as I know that results will come. Of course, I’m fighting a losing battle. We all are. Death will catch up with me regardless of how much B12 I inject or how many chemo drugs I take. I find it almost funny that we talk about medicine, police, firefighters, paramedics, etcetera as saving lives. The best they can do, in reality, is allow life to go on a bit longer, to postpone death. In any case, I have my B12 situation under control.

In terms of myeloma, I’m off chemo drugs for at least a month. Myeloma protein is barely detectable in my blood so this is a good time to lay off for a while and see how things go. It would be grand to get some relief from side effects for a time. Next month sometime they’ll check my blood again to see what the status of my paraproteins(myeloma proteins) are. I can easily go back on chemo if the bloodwork shows a rise in paraproteins. During our last phone call my local GP/oncologist uttered the word remission. I hope he’s right but only time will tell.

Another thing has come to plague me. It looks like it’s true that nastiness comes in threes. I’m getting a CT scan on Monday of my left jaw. I saw an endodontist a while ago because of excruciating pain in one of my left upper molars. He figures I need a root canal. Well, that’s probably true, but because I had a lesion in my left lower jaw that required radiation treatment earlier this year, I wanted some assurance that this issue with my upper jaw wasn’t also due to myeloma. It may be that I should be more trusting, but the symptoms caused by a myeloma lesion and a rotten tooth are similar so I just wanted a little reassurance. I got that when I spoke with an oncologist at the BC Cancer Agency in Victoria last month. She ordered the CT scan the results of which will determine whether I get a root canal or more radiation. My, my. Life can be complicated.

In the meantime, I’m back to doing some drawing. I got a very cheap but good set of coloured pencils for my birthday last month, so I did a couple of drawings. Here they are:

Christmas cactus head on view.
Christmas cactus side view.

I have one more I want to do with the coloured pencils using a different profile. Then I want to do a couple more in watercolour on proper paper, and maybe in acrylic on a large canvas. I’ll have to assess my level of energy before I undertake a large(ish) canvas, but I seem to be getting stronger every day now.

___________________________________________________________________

*If you haven’t read my post from January 13, 2022, you might want to do so now. It outlines my experience with B12 deficiency and pernicious anemia.

Pernicious Anemia and Multiple Myeloma: A link?

Well, well. I should have known. Sometime before I was diagnosed with multiple myeloma in October of 2019, I was diagnosed with pernicious anemia. That’s a vitamin B12 deficiency that cannot be corrected by just taking a supplement. With a B12 deficiency, a dietary supplement can fix the problem, but pernicious anemia is a situation where B12 cannot be absorbed into the blood by ordinary means because of a missing intrinsic factor, a protein which is produced in the gut by gastric parietal cells. For me to get vitamin B12 into my bloodstream I need to inject it intramuscularly. I do it myself because I can’t be bothered to go to the Nursing Centre or somewhere where someone can do it for me. It’s a simple jab in the leg. No big deal, but for me it’s a life saver. As Martyn Hooper, the Founder and President of the Pernicious Anemia Society (PAS) in Britain, says it regarding his own experience: “Consequently, should I stop receiving injections then I would once again be unable to make healthy red blood cells and would gradually become anaemic and eventually die”*. Hooper was undiagnosed for years and has suffered permanent neural damage because of the delayed treatment. It’s a question of life or death. Pernicious anemia is called pernicious because it’s deadly. Just to add a bit of fun to it, it’s also incurable, just like myeloma. Towards the end of this post I specifically address the link between pernicious anemia and myeloma, but for now I need to deal with pernicious anemia.

As it turns out, I had been on monthly injections of B12 for years before about six months ago I let it slide. I ran out of B12 and just didn’t bother asking my GP for another prescription. Truth be told, I didn’t really feel as though the monthly injections were doing any good. Of course, my whole body was thrown into chaos by myeloma making it very difficult to pinpoint the source of any given issue I may be having, and there were lots of those. Frankly, I should never have stopped injecting B12, but it’s not going to do me much good to beat myself up about it. I’ve already spent enough time doing that.

About three weeks ago, after feeling like I’d been going downhill for some time, I called my GP’s office and requested a B12 blood test and a prescription for a new supply of it. This past Monday I went to the lab for my regular monthly blood workup in preparation for my chemo appointment today, but this time B12 was added to the assay. On Tuesday I got the results. No wonder I haven’t been feeling well, the level of B12 in my blood was way below the recommended amount. I came in at 84 pmol/L when the reference range is between 150 and 600. The literature I’ve scoured is inconclusive, but it seems that 150 is way too low for most people and 1000 is recommended by some sources for seniors to maintain good cognitive and neural health. In any case, my GP’s office contacted me this morning and told me that for the coming week I should inject B12 daily, for the following month, every week, and thereafter once a month. I’ll have to make sure the docs add B12 to my monthly blood assay so that I can ensure that I have the requisite amount in my blood. I think I’ll aim for 1000 pmol/L. If I can’t maintain that with a monthly injection, I’ll increase it to bi-monthly, etcetera. 

I haven’t conducted a scientific poll, but I doubt that most people know about how important vitamin B12 is for good health. B12 is crucial for the production of red blood cells. B9 (folate) is also important as is D3 but these can be easily supplemented. It’s worth doing an internet surf to find out more about B12 especially if you’re feeling chronically tired for no reason. I think the PAS is a great source but there are others, lots of them. The challenge is to recognize the stupid sites and not use any of their stupid suggestions or offers of stupid products. Make sure that if a site makes specific claims like methylcobalamin is better than cyanocobalamin get a second opinion. Martyn Hooper injects methylcobalamin twice a week (5mg/ml). It’s available online but it’s not cheap. He offers only one source for his assertion that methylcobalamin reduces peripheral neuropathy whereas cyanocobalamin doesn’t, and that paperis about ALS and methylcobalamin in megadoses. I generally trust Hooper, but we all make mistakes and sometimes we get headstrong about our own health and how to manage it. Hooper has good reason to be pissed at the medical profession, and the medical establishment in Britain and if you read his very accessible books you’ll know why.

Now we get to the fun part…the one with no conclusive argument: the relationship of pernicious anemia with multiple myeloma. So far, very little research has been conducted on the links between pernicious anemia and myeloma. This article does address the issue but is ambivalent in its findings as you can ascertain from this quote:

For multiple myeloma, increased risk was seen only with pernicious anemia, an inflammatory condition in the stomach leading to vitamin B12 deficiency. This association was also demonstrated in two other large studies, which found few other autoimmune conditions associated with multiple myeloma.1617 Because of the lack of association with other autoimmune conditions, our finding may point towards the involvement of vitamin B12 deficiency. Indeed, vitamin B12 deficiency has been reported in patients with multiple myeloma and in patients with the precursor condition, monoclonal gammopathy of undetermined significance.161946 Although multiple myeloma may cause vitamin B12 deficiency by consuming stored vitamin B12,47 we speculate that vitamin B12 deficiency could promote the development of multiple myeloma by causing derangement of one-carbon metabolism, as proposed in other cancers.48 2

See citation below.

This study3 shows a more significant association between myeloma and pernicious anemia: “Using a large population-based dataset, we observed a 3-fold significantly increased risk of MM among subjects with a personal history of pernicious anemia, which has been found in previous studies.” Now, that got my attention. It’s clear that I had pernicious anemia before I had myeloma – at least that’s what I think. However, because I wasn’t diagnosed with myeloma for a long time before I contracted the disease it may be that I had both pernicious anemia and myeloma at the same time. 

All I know is that pernicious anemia and multiple myeloma share a whole load of effects and they are both incurable and fatal if not treated. I’ll let you know how my current B12 therapy goes. Right now it’s being affected by today’s injection of Daratumumab. Oh well. I always liked a puzzle.

_____________________________________________________________________________________

* from: What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper, Chris Steele)

1Izumi Y, Kaji R. Clinical trials of ultra-high-dose methylcobalamin in ALSBrain Nerve 2007:59 (10): 1141-1147.

2  Lesley A. AndersonShahinaz GadallaLindsay M. MortonOla LandgrenRuth PfeifferJoan L. WarrenSonja I. BerndtWinnie RickerRuth ParsonsEric A. Engels. Population-based study of autoimmune conditions and the risk of specific lymphoid malignancies. International Journal of CancerVolume 125, Issue2, 15 July 2009, Pages 398-405

3Ola LandgrenMartha S. LinetMary L. McMasterGloria GridleyKari HemminkiLynn R. GoldinFamilialcharacteristics of autoimmune and hematologic disorders in 8,406 multiple myeloma patients: A population-based case-control studyInt J Cancer 2006 Jun 15;118(12):3095-8.

Happy New Year (sort of)!

The conventional thing to do at this time of year is to reminisce about events of the past year and pick out highlights and possibly low lights, in this case, of 2021. Well, I would do that except that my brain is quite mushy right now. I’m not sure why. It may be the chemo meds. They have a variety of side effects that vary from week to week. This week my meds may have decided to afflict me with a sludgy brain to go along with my barely functioning legs. 

Then there’s the fact that 2021 was, to be charitable, less than a stellar year. Chemotherapy and monoclonal antibody infusions every four weeks for a morning at the hospital can put a damper on life. Part of the problem with the chemotherapy pills I take every day is that I experience a surprising range of side effects. While all this goes on, I have a lot of difficulty writing. I can’t seem to hold onto an idea or a train of thought for any length of time. I’ve tried to put together a couple of blog posts over the past three weeks, but they’ve turned out resembling alphabet soup rather than carefully crafted narratives. Right now, I seem to be experiencing a slight window of lucidity, but that may just be self-delusion on my part. I have no idea how long this window will be open. You be the judge. 

Today is January 1st, 2022. The first day of the year is supposed to be infused with positive thoughts, merriment, and optimism. I guess saying that 2022 will not be the year that I die qualifies as optimism, or maybe reckless self-delusion. I turn 75 years old in a few days. I know I’ve written it before on this blog, but I say it again: How in the hell did that happen? It seems to me that I was forty years old yesterday. Now seventy-five? WTF. Following Barbara Ehrenreich (who is my age) I have noted in the past that I’m old enough to die. That’s true, but still, I have confidence that people will not have to publish an obituary about me in 2022. 

My memory has gone for a crap. I don’t have dementia, that’s for sure. But still, I guess that’s to be expected of a person my age. I retired from twenty-nine years of teaching at North Island College in 2012, but I had been teaching in the Lower Mainland since 1976. Since my retirement, I have somehow mislaid recollection of so many things. I do have this blog to jog my memory. I started it in late 2012 and have produced over 300 posts since then. That’s a lot of bits and bytes engraved somewhere in a computer hard drive or on the cloud, whatever and wherever that is. I think that the number of words I’ve clicked out probably amounts to at least a five-hundred-page book. I know that since my cancer diagnosis in the fall of 2019 I’ve put together the equivalent of a three-hundred-page book chronicling my experience with myeloma, its side effects, and chemotherapy with its side effects. Now, I’m not sure what I’ll do with this blog. Unfortunately, I have very little energy to do much of anything physical. The oncologists in my life are very reluctant to tell patients what to expect of a life with cancer, especially one like myeloma. Gawande is clear on that:

“Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than 40 percent of oncologists admit to offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms — “the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught.” (from “Being Mortal” by Atul Gawande)

I have found that with old age and a crumbling infrastructure, and as I note above, a lot of physical activity is out of the question. Coming to terms with that reality is very difficult, I can tell you.  Carolyn and I have done some camping over the years since our retirement. Sometimes we were accompanied by family. Most often we were out there by ourselves. We spent most of our time camping in Strathcona Park. I hope to be able to go camping again, but I don’t have a lot of strength and energy. That’s something I have to work on so that I can DO STUFF this coming spring and summer. 

Now, I don’t have to think about physical activity. We have a blizzard outside and snow 50 centimeters thick. So, I read. I have five books on the go right now. I’ll discuss them soon in a post!

Time For Celebration

[I wrote this (slightly edited) post in 2017, a couple of years before I was diagnosed with myeloma. Time is a subject that has been on my mind for a very long time. I wrote my dissertation about the work of Harold Adams Innis (1894-1952). He was very much preoccupied with time and wrote extensively about it late in his career (and life it turns out). So have been hundreds of other philosophers, social theorists, physicists, biologists, etcetera. We think about time on many levels of analysis, from cosmic time to microseconds in productive processes. We think about it in social as well as personal terms. We are especially concerned with it when it begins to run out. Read on]

How do you experience the passage of time?

Time is a big subject and has been the focus of many philosophical and scientific ponderings and is, of course, a major preoccupation of the world’s religions and cultures. There is also the individual, institutional and cultural projects around time and its importance to our lives. We mark (as distinguished from experience) time in many ways. We use clocks and calendars. (The Maya had two calendars, that’s how important time was to them.) We carefully note the passage of the seasons with special celebrations, and we celebrate our birth days every year. We don’t celebrate the day we die, of course, we let others do that in the form of wakes, funerals, and these days, celebrations of life because we are no longer in any shape to celebrate anything ourselves.  We ask: “What time is it?” and we expect to get an answer: “Why, it’s two thirty in the afternoon.” We don’t expect “the anthropocene” as an answer although it would be technically correct.

But this blog post is not about any of this. It’s about how we experience time. In many ways, time and life are synonymous. As individuals we need to be conscious to experience time. In our dreams time is irrelevant or, at least, it can take on bizarre aspects, but we aren’t aware of that until we wake up and can reflect on our dream and its bizarre depiction of time. Writers, novelists in particular, distort time as a regular practice.

We experience time as past, present, and future although we live only in the present. The past and future are cultural constructs that have only the reality we give them. Our memories and our recollections of events are highly selective. There is no such thing as an objective past. We select events, actions, people, names, places, etc. and construct a cognitive map of them into a coherent picture, a picture that is congruent with our life as we experience it and build a store of impressions by which we then judge our actions and those of others. Recall is impressionistic, not realistic. It deceives us all the time as we ‘fit’ the past into our current views of things. 

We are most often not even aware that that’s what we’re doing. We drive, we brush our teeth, we pay taxes, we get on airplanes, we go to libraries, we bank, we vote and most often we don’t question these actions or even consider them a part of a consistent set of habits of life and thought that we learn from others as we live out our lives in networks of interdependencies. As Norbert Elias argues we are less individuals than interdependencies and interweavings. Our daily thoughts and desires, as they join collectively to express themselves as consciousness, make us more Borg than anything. Magically, however, we learn to believe that we control all aspects of our lives as individuals and sadly, people who have shitty lives can only blame themselves for that. That’s the classical economic view of things. Classical economics, according to Thorstein Veblen, uses what he calls the hedonistic calculus to describe how we make decisions in our lives. For him, classical economists (and I would add more contemporary trickle-down ones like Milton Friedman) think of us as ‘globules of desire’ who everywhere seek to maximize pleasure and avoid pain. Of course, life just doesn’t work that way. We do not judge every situation or opportunity we encounter in life as a calculation of pleasure or pain. There are numerous capacities and propensities we bring to our daily lives that have everything to do with the need to delay pleasure, accept pain or make decisions clearly not in our own interests. 

We interpret the past, the present and the future based on our ideologically constructed maps of how the world works. And, boy, do we love our maps. We hang on to them for dear life. Those ideas we cherish, those beliefs we idealize are created in a cauldron of the past, a past we had no hand in making and that starts presenting itself to us the moment we drop out of the womb. Of course, the ideas we pick up early in life we often reject later as we join more and more interdependencies and interweavings, some of which will have more appeal and relevance as the world changes around and in us. 

Christians and adherents to many other religions accept time as a concept, but deny its existence after death when, for them, eternal life kicks in. How could we experience time in a state of eternity? Time is change. What would happen in a place of eternity? I’m no theologian, but I’d be curious as to how a theologian would deal with the question of time in eternity.

Merry Christmas, all, and Happy New Year.