Myeloma and Pernicious Anemia: My Constant Companions

Pernicious Anemia

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

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

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

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

Myeloma

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

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

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

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

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

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

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

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

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

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

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.

Civil War in the U.S.A.: an addendum with references.

I don’t intend to comment here. All I want to do is post websites or news sources that are talking about the possibility of civil war in the States. Most of the news sources revolve around a new book by Dr. Barbara Walter, a political scientist from California. Wade Davis from UBC comments. The last link questions a number of the assumptions of the people claiming a civil war is coming.

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/

Civil War in the U.S.A.

Some people might argue that as a Canadian I should mind my own business and refrain from commentating on American politics. I don’t buy that, obviously. There are whole university departments dedicated to commenting on politics both national and International. It would be a sad day when we were restricted to commenting on our own national issues. In any case, what’s happening in U.S. politics now is liable to affect us all sooner or later.

Robert Reich in an opinion piece in The Guardian argues that the second American Civil War is happening now. He proposes some evidence for this in his piece. It’s not hard to find.

The structure of the American political system itself was constructed via a series of compromises between the federal and state powers, between conservatives and liberals. The federal government consists of Congress with the House of Representatives and the Senate. They are the legislative branches of the state while the executive branch is the presidency. The Supreme Court is the third branch in this triangle of power and it is the judicial branch. Now, these three branches of government are supposed to mind their own business with Congress passing laws, the president enacting them and the Supreme Court deciding on the legality of Congressional and other actions brought to it. It’s much more complicated than that, but that’s its essence. The compromises that were negotiated were always to be temporary, only to last as long as better arrangements were negotiated. They never were.

Sadly, the three branches of government rarely mind their own business. Instead, they often choose to carry forward the political agenda of whatever group to which they adhere. This is the basis of Reich’s argument. The red states (dominated by Republican ‘lawmakers’) and blue states (dominated by Democratic ‘lawmakers’) are keen to serve their respective political agenda. No issue more clearly defines the differences between the Republicans and the Democrats than the access to abortion issue.

As Reich points out, the current Supreme Court seems to favour the abolition of abortion rights but what it actually does is turn the issue over to the states knowing full well that bonkers state legislators in Florida, Texas, Alabama, Mississippi, et cetera, will criminalize abortion in all instances including when pregnancies arise from incest, rape, or ectopic pregnancies.

Republicans generally side with states’ rights against those of the federal government. It’s not a mystery why this is so. Red states in the graphic below are dominated by Republicans while the Blue states are dominated by Democrats. The Senate is composed of one hundred members, two from each state, so Wyoming with a population of 576,851 has the same number of senators as California with a population of 39,237,836 as of July 2021. Wyoming, according to the map below is a red state, that is one controlled by Republicans. You’ll note that red states dominate a large swath of the country while the blue states hug the coasts in the west, northwest and eastern seaboard. There is a distinct geographical identification of blue and red states. There are clearly more red states although they don’t represent a majority of the population.

Reich seems to be tired and almost resigned. I’ve been following his work for years and it seems to me that there is a certain air of defeat in his words.

From: https://medium.com/reluctant-moderation/the-fundamental-difference-between-red-states-and-blue-states-8ad4820585cd.

Lawrence O’Donnell, the MSNBC host of The Last Word graphically represents what he sees as the breakup of the United States which he portrays by striking out United before States of America in the screen behind him as he argues that the electoral college is subverting the will of the people in the US. In fact, the Electoral College confirmed Trump in 2016 even though he had clearly lost the popular vote. He argues that a minority in the US is now in control of government. His argument is one that is hard to contest given the overwhelming evidence in support of it.

I’m not an American but I am a sociologist and over the past few decades (1976-2012) while I was still working as a college instructor I told my students every semester that they should mark my words: the American Empire will collapse. It will do so by imploding, not by an external threat. Nothing lasts forever. The question is not whether or not it will collapse, but how and when. Internal contradictions that are leading to the collapse of the US Empire can be found in the falling rate of profit which has led many American corporations to move production facilities offshore and seek markets all over the world. Cars may be assembled in the US, but their parts are manufactured all over the world and shipped to the assembly plants using just-in-time manufacturing. Supply chain issues involve a major strain on warehouse-less production requiring parts arrive for assembly as they are needed. It’s a ‘skinny’ system with little room for error.

It will also collapse as a result of the unresolved social divisions that exist based on race, economic inequality, and gender. The religious right has been able to seize the reins of power, and is flexing its muscles at all levels of state and federal government. Reich sees the second civil war as being relatively peaceful. I can’t imagine the knuckle-draggers are going to allow that to happen. They revel in violence. Given the licence to rape and pillage they are now getting from Congress and the Supreme Court, and they most certainly will take advantage of it. This summer will be one to watch.

As Reich and others have pointed out, the Republican led resurgence of state power using the Supreme Court and Congress as weapons in the struggle is already tearing the country apart. The abortion issue will serve to exacerbate divisions and heat up tempers. There is no sign of compromise or respectful dialogue anywhere to be seen. I hope I’m wrong about that.

I look to our neighbours to the south and despair. Will future generations look back on present day America and ask: Is that what you all wanted: the destruction of the country you all purport to love? Seems insane. It probably is, and it may be too late to do anything about it. History will take its course.

Aw, come on…let’s talk about death some more.

[I suggested last month that I would stop blogging or change the way I use this blog. Well, because I generally enjoy writing, I decided to continue writing but not on a schedule and on topics I have not yet addressed. I’ve always been a fan of evolutionary theory in all disciplines so I’ll publish on that topic some, I’m sure. But the topics I have published on will likely continue to be on the list. Death and dying continue to preoccupy me as I get closer to having an immediate, personal relationship with them. I’ll write about them starting today. I’ll still write about my cancer journey too occasionally. It’s such a different experience than people with other kinds of cancer have.]

Death and More Death

Sherwin B. Nuland

I’ve got two books on death on the go right now. One I’ve already introduced on this blog. It’s by Sherwin B. Nuland and is called How We Die. It was a national best seller in the U.S. published in 1994. Nuland died in 2014. I wonder if his dying conforms to what he concluded in 1994. Probably does. Nuland was 83 when he died of prostate cancer after his mother and his brother had both died of colon cancer. That could not have been very pleasant. He was a clinical professor of surgery at Yale University until he retired in 2009. His obituary in the New York Times expresses this thought about Dr. Nuland and his death: 

To Dr. Nuland, death was messy and frequently humiliating, and he believed that seeking the good death was pointless and an exercise in self-deception. He maintained that only an uncommon few, through a lucky confluence of circumstances, reached life’s end before the destructiveness of dying eroded their humanity.’I have not seen much dignity in the process by which we die,’ he wrote. ‘The quest to achieve true dignity fails when our bodies fail.’

And, of course, all bodies fail. 

The second book I want to discuss in this blog post is one that was recommended to me by a person who called me out of the blue from the local hospice society.* It could not be further in spirit from Nuland’s book. So, the book this person recommended is called Death: An Inside Story. It’s characterized on the cover as “A book for all those who shall die.” The author goes by the name of Sadhguru (Sad guru). The book describes him as a yogi, mystic, and visionary. This is not the kind of book I normally read, but it comes highly recommended so why not?

Sadhguru

Unlike Nuland, Sadhguru is a fan of good death. Chapter Six of his book is called Preparing for a Good Death. He writes in an idiom that is foreign to me although I have read a number of books by Indian writers in general, and also by Zen Buddhists. I have read very little Hinduism, and when I have the book has been by a Western commentator. I know people who frequent ashrams in North America, Europe, and India. They have various reasons for doing so. I won’t speculate on their motives. I can’t see myself doing that. So, when I read Sadhguru, I admit that I am doing so from a place of relative ignorance. If I ever attended an ashram I may have more insight into the ‘place’ that Sadhguru occupies in the world of intellect and inner peace. Still, I’m not at a complete loss when I read Sadhguru.

I can relate to some of what Sadhguru professes in his book, once I get past what I consider the idiomatic nature of much of what he has to say. His emphasis that death is a natural fact of life resonates with my view and jives with Nuland too. It’s not a defeat of life or a failure. His views on our place in the scheme of life and death over millions of years is not unlike my own. Where I depart from Sadhguru is in his matter of fact insistence that ghosts are real and that reincarnation is a thing. In a chapter called The Riddle of Reincarnation, Sadhuru maintains that when people have sex and create an embryo and a fetus, life begins only after forty to forty-eight days after conception. That’s when “Someone else who is ripe for that and is looking for a body comes and occupies it”. (287) I’m still wondering how I could interpret this idiomatically. He’s not saying that the occupation of an embryo by another being is conscious. Instead, he writes, it’s karmic. 

One thing that Sadhguru, Nuland and I can agree with Ernest Becker on is that we constantly endeavour to deny death. We set up very imposing institutions designed to deny death. Nuland chastises modern medicine for doing just that. Sadhguru writes that

“One reason people can ignore death and continue to live on in their ignorance is simply that the religions of the world have spread all kinds of idiotic stories about life and death. They created some silly childish explanations for everything.” (5)

 It may be that Sadhguru is not reflexive enough to recognize the religious aspects of his own work. I wonder how his discussions of his past lives and reincarnation differ from other religious denial mechanisms. He states bluntly that “people don’t die.” (13) Now, if I read that literally, it seems absolutely absurd. He follows that up by writing that: 

“In a way, death is a fiction created by ignorant people. Death is a creation of the unaware, because if you are aware, it is life, life and life alone – moving from one dimension of Existence to another”.

 However, if I read this idiomatically I see a truth there. It’s only absurd if we take his words literally. Of course people die, but the atoms and molecules that make us up have always existed and always will. When I eat a carrot, the carrot becomes me (what I don’t poop out of course) so that’s life moving from one form to another. 

Over the millennia, all the organisms we eat and call food have been transformed into something else. Life is but a movement of matter and energy from one form to another. 

In our case, as is the truth for all organisms on this planet, we are finite. We are like mushrooms that sprout on the mycelium we call Life. We find it normal that a mushroom grows then decays enriching the soil from which it emerged. It’s interesting that so many of us (I haven’t done any surveys) have such a hard time accepting that reality as our own. How do you see it? Come on, let’s start a dialogue.

I’m really doing an injustice to both Nuland and Sadhguru. It’s not nice to pick and choose bits and pieces of their work to build my own argument. I guess I’m not very nice. Frankly, there is no substitute for reading their books in their entirety to make up your own mind.

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*Early on in my cancer diagnosis, in 2019 and early 2020, I visited the pain docs at the Comox Valley hospital and a couple of the docs actually came to the house for a visit. We discussed pain and Medical Assistance in Dying (MAID). I wasn’t quite ready for that yet, but the Hospice Society is great and they make sure that anybody on their list is contacted now and again. Eventually I will likely want their services.