health

February 18 Update

~ Roger JG Albert ~ 2 Comments

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

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

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

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

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

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

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

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

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

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

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

75 UP

~ Roger JG Albert ~ 4 Comments

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.

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*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?

~ Roger JG Albert ~ 6 Comments

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 paper1 is 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.16, 17 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.16–19, 46 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.

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* 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 ALS. Brain Nerve 2007:59 (10): 1141-1147.

2  Lesley A. Anderson, Shahinaz Gadalla, Lindsay M. Morton, Ola Landgren, Ruth Pfeiffer, Joan L. Warren, Sonja I. Berndt, Winnie Ricker, Ruth Parsons, Eric A. Engels. Population-based study of autoimmune conditions and the risk of specific lymphoid malignancies. International Journal of Cancer. Volume 125, Issue2, 15 July 2009, Pages 398-405

3Ola Landgren, Martha S. Linet, Mary L. McMaster, Gloria Gridley, Kari Hemminki, Lynn R. Goldin. Familialcharacteristics of autoimmune and hematologic disorders in 8,406 multiple myeloma patients: A population-based case-control study. Int J Cancer 2006 Jun 15;118(12):3095-8.

Happy New Year (sort of)!

~ Roger JG Albert ~ 2 Comments

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!

Such a Mess.

~ Roger JG Albert ~ 2 Comments

I must admit that I’m a bit depressed these days. A substantial contribution to my depression is the amount of caution I need to exercise every day in the face of the coronavirus COV-2 and the cancer that I still harbour in my bones. Even though I’m triple vaccinated, I still need to be very cautious lest I contract the virus in my compromised state. Picking up an infection, any kind of infection could be deadly for me. Carolyn is also immunocompromised because of arthritis meds she is on, so we are somewhat reclusive these days. Carolyn still does virtually all the shopping, but I do get out with her now and again. In my younger days, I was a moderately social guy. Not anymore. Among many other things, I miss having a beer at the CBC with friends. 

As far as myeloma is concerned, there seems to be just minute traces of it in my blood. Of course, I’m still on chemotherapy. Who knows what would happen if I suddenly went off chemo. I may need some dental work requiring an antibiotic. My local GP/Oncologist figures that I shouldn’t be on chemo and an antibiotic at the same time. He suggested that I think about going off chemo for a while, at least during the time I need for the dental work. He also suggested I talk to ‘my’ oncologist in Victoria about it. I had an appointment with an oncologist in Victoria this coming Monday, but he cancelled, according to his assistant, because he was called away unexpectedly. Great. I haven’t had a meeting with an oncologist in Victoria for months, and now who knows for how much longer. I haven’t had an appointment with the same oncologist in Victoria twice in a row. They are specialists, of course, so I don’t expect to have the same kind of relationship with them as with my GP, but still, I don’t know how continuity of care happens in this situation. I feel a little abandoned. 

What I find as distressing as anything as a person with cancer is the absence of predictability. Well, I guess I can always predict that I won’t be able to predict how things will go. I can usually predict that I’ll be going to the hospital every fourth Thursday of the month for an infusion of Daratumumab, but even that is a toss-up. It all depends on my bloodwork. If it’s good, then I go. If not, then I don’t go, and things change quickly. What I mean by the absence of predictability is more the idea that when I get up in the morning, I have no idea whether I’ll have any energy, will be lucid, or how much pain I’ll be in, and in which part of my body. Right now, the peripheral neuropathy in my left hand is bad, especially if I sleep on it in a particular way. As I write this, I’m feeling very tired and ‘dizzy’, even disoriented. I feel like I have a hangover. I don’t like it. I’ll go down for a nap soon. I’ll see if that helps. There’s no predicting. 

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Slip slidin’ away.

I know three people who have chosen MAID (Medical Assistance in Death). The reports from relatives (or from themselves) suggest that they went gently into the night under conditions of their own making. I know others who have either not had the time to set up MAID, or who, for whatever reason, chose to let things run their course and for whom the pain of dying was muted with the help of morphine or other pain killer.  After reading Barbara Ehrenreich, Brian Greene, Siddhartha Mukherjee, Atul Gawande, and Jason Fung, all authors I’ve discussed in this blog at times, it strikes me that slipping gracefully into death is not a fate most of us will share. I don’t know what the billions of people in the poorer parts of the world suffer as they approach death. I know that in some places where wars are still all too common, death by a bullet or a machete are a fate that await many people. Death by poverty is all too common. It’s true that death awaits us all, but the conditions of dying are not democratic. Considering all living things on this planet, dying is generally shunned. Yesterday, while shaving, I inadvertently disturbed a spider who was minding its own business in and around the vanity lights. It took off, scurrying like mad, wanting to live another day, I surmised. It did not want to die. 

As biological organisms we tend to cling to life for all it’s worth. Obviously, there are exceptions to this rule. Even for people who commit suicide, I suspect (with no hard evidence whatsoever) that it’s not life they are escaping, but unrelenting pain, physical and/or mental. I’m sure that they would gladly continue living if the pain would only go away. I think that’s true of people who choose MAID as well as those who commit suicide in any number of non-sanctioned ways. Of course, the people who I know chose MAID were older. As Barbara Ehrenreich wrote (somewhere, probably in Natural Causes) when she got to be seventy-five years old: “I’m old enough to die now.” I’ll be seventy-five next year, and I guess I’m old enough to die too, but I think I’ll endeavour to stay alive in 2022. 

18 Looking in the Mirror.

~ Roger JG Albert ~ 7 Comments

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

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

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

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

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

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

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

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

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

Sleepless in Cumberland

~ Roger JG Albert ~ 4 Comments

Yesterday was my day at the hospital for my monthly infusion of Daratumumab, the monoclonal antibody. It along with other flavours of monoclonal antibodies have changed a lot about how medicine thinks about and treats cancer, arthritis, and other nasty ailments of us fragile mortals. Along with my Dara, I also take some dexamethasone, only 12 mgs for the month, and a few other meds designed to protect me from viral infection. It’s the dex that keeps me awake as I’ve noted many times on this blog. 

So, instead of lying awake, allowing whatever thoughts I had rattle around in my brain causing no end of silly talk, I decided to read instead. Reading is a good way of filling in the night hours in what some people would call a ‘progressive’ way. However, I may need to revise the material that I choose to read at night. I haven’t read a lot of fiction in my life, focussing my reading time on sociology, anthropology, philosophy, and other sundry disciplines. I have read most of Kurt Vonnegut’s work, all of Emily St. John Mandel’s books and I did recently read several books by Kim Stanley Robinson, fictional accounts of the human colonization of Mars, New York under flood, and other similar topics. In his Mars trilogy one interesting commentary was on longevity. If people accepted a certain treatment, they could live hundreds of years instead of the paltry number of years generally allotted to our species. That fact, however, did not seem to mitigate the angst they felt about death and dying. In a book called Aurora, Robinson is at his most pessimistic about human excursions to other planets and their satellites in our solar system. His conclusions about the time it takes to travel from Earth to other planets are telling. Travelling to and back from a satellite of Venus, for example may take a hundred and seventy years or more with the need for cryogenic sleep. So, if you were one of the ‘lucky’ ones who won the lottery for space travel you would return to Earth after several decades of travel at a time when no one would know you, you would have no recognizable family and you would be relegated to the margins of society. I read Robinson at night. It was a bit hard to get to sleep after reading some of his stuff, but not impossible. Reading Barbara Ehrenreich and other non-fiction writers of her ilk is an entirely different story (no pun intended). Last night I finished reading her book Natural Causes: Life, Death, and the Illusion of Control. This book is firmly planted in reality. Problem is reality sucks sometimes. Ehrenreich is especially blunt when she writes about aging. Getting old is no cake walk. It’s not for the faint of heart although in our culture it’s not cool to ‘give in’ to the infirmities of age. Ehrenreich writes:

“But as even the most ebullient of the elderly eventually comes to realize aging is above all an accumulation of disabilities, often beginning well before Medicare eligibility or the arrival of the first Social Security check. Vision loss typically begins in one’s forties, bringing the need for reading glasses. Menopause strikes in a woman’s early fifties, along with the hollowing out of bones. Knee and lower back pain arise in the forties and fifties, compromising the mobility required for “successful aging.”” (from “Natural Causes: Life, Death and the Illusion of Control” by Barbara Ehrenreich)

And:

“Not doing anything is the same as aging; health and longevity must be earned through constant activity. Even the tremors of Parkinson’s disease can be seen, optimistically, as a form of health-giving exercise, since they do, after all, burn calories. The one thing you should not be doing is sitting around and, say, reading a book about healthy aging. There are bright sides to aging, such as declines in ambition, competitiveness, and lust.”*

So, we must always put a happy face on adversity, be positive about everything, and keep moving. I don’t think my nine hours a day sitting with my computer on my lap would be morally acceptable. But you know what? I’m finding it a wee bit difficult to feel positive about dying. A Cumberland friend, Howard Jones, who died recently spent his last few days in the hospital. He couldn’t breathe on his own much anymore. Months ago, over coffee he confided that he didn’t know how long he could continue on oxygen with a life very much reduced to sitting or lying in bed. He could no longer walk in his beloved forest. I meant to visit him in the hospital when I was there for my usual chemo treatment, but I was cautioned not to because of my compromised situation. I should have gone anyways. Now it’s too late. We did text each other, but that’s not the same as a face-to-face visit. One day, the day he died as far as I know, he was the one to make the decision to go off oxygen, thus ensuring his death. I think that Howard died a good death. 

The especially difficult decisions I know I will face in the near(ish) future will be whether I continue with the chemotherapy that has so far kept me alive. I will be thinking of Howard when the time comes. I expect that my (and my family’s) decision will hinge on the quality of life my treatments are now offering me and the intensity of their side effects. There is a question of how much benefit a few months of life can give in the face of much reduced quality of life. It will not be an easy decision. I love life, I love my family, my community and where I live. I am loathe to give that up, to know that the world will carry on without me. But it’s not like I or any of us have a choice in the matter. We all die. Some of us, however, are given the privilege of deciding when and how we die. 

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*I’m reading Ehrenreich as an ebook on a Kindle. The problem with that is that when I select a quotation to use on my post, it doesn’t give me a page number. I find that unacceptable and will see if I can find a work around. 

Lassitude – An Addendum

~ Roger JG Albert ~ 2 Comments

So, on my last post I noted that I’d be going to the lab at the hospital this morning to get my blood tested in preparation for my Daratumumab infusion on Thursday. I told you I’d let you know how it went. Well, I texted the lab at 9 AM. We can get on a wait list if we text the lab. They text back when it’s our turn. I always do that to avoid sitting in the lab waiting room with a lot of sick people. We then immediately drove to the hospital. We got to the hospital at 9:40. I was 37th in line at that point. I waited in the car while Carolyn took Tilly for a walk. 

I got my blood taken at 10:40. Not as bad as it could have been, especially on a Monday morning. When I told the lab tech that I was quite disappointed that VIHA had closed all the satellite labs in the Valley, she said that if they had left them open, they might not be run off their feet at the hospital lab. But then we agreed that staffing was a problem. 

Getting my blood tested within ninety-six hours of my infusion is a must. They won’t proceed with the infusion if my blood shows any kind of wonkiness. In the last few months it’s been brilliant! Last month there was no sign at all of myeloma protein in my blood. Everything is going fine with me on that front. My chemotherapy is very effective and there is no trace of myeloma protein in my blood. 

I had a consult with my local GP/Oncologist about ten days ago. We discussed the possibility of my going off chemo for a short time, but I figured it would be best to wait until I spoke with an oncologist at the BC Cancer Agency next month to entertain such a course of action. I feel so fortunate that I have great care and my prognosis is excellent. Myeloma used to be a killer. It still is, but it’s not a quick killer. It takes its time now. There are some amazing chemo meds that account for the progress being made in the survivability of myeloma patients. The trope now is that we’ll more likely die with myeloma than because of it. Fair enough. Obviously, I want to live longer, but I’m not keen on following my father in the way he died. 

It’s clear that some of my current lassitude is caused by my chemo and pain meds. However, the fact that I’m almost seventy-five is also an important factor. As we were driving to the hospital for my consult with Dr. Bakshi, I happened to notice a cyclist pushing hard along Piercy Road on the way to Highway 19. He was maybe in his fifties. This scene reminded me of years gone by when I rode my bike on this same stretch of road. I’d get tired alright, but I had plenty of strength and endurance. I could easily ride forty or fifty kilometres back then. I still have my bike. It’s a good cruising bike, but I’m almost afraid to get on it because my balance is off, and that’s not good for bike riding. I may give it a shot again. We’ll see.

I guess what I’m saying is that each stage of life has its own characteristics. It’s a bit crazy to think that we should be able to do at seventy-five what we did easily at forty-five or fifty-five. Certainly, there are some people who can still engage at seventy-five in some impressive physical activity. I know some of them, but I’m definitively not one of them. As my GP noted too, having a nap in the afternoon at my age isn’t beyond the moral pale. Today, I didn’t nap in the afternoon. I went down to my shop instead. I had some energy. Better not to waste it. I’m hoping to sleep a little better tonight because of it, but there is a confounding variable in my sleep patterns. Her name is Princess Pretty Paws and last night she damned near drove me crazy. She started meowling at 2:30 or so and carried on for most of the rest of the night. She’s lucky to be alive. 😉

Lassitude

~ Roger JG Albert ~ 13 Comments

Yes, lassitude, which the dictionary that Apple so kindly provides for us as part of the operating system on my computer defines as: “a state of physical or mental weariness; lack of energy.” That about sums it up. 

I know my expectations for myself are way out of whack. I keep forgetting the basic realities of my life: I’m almost seventy-five years old, I have a slow acting, but debilitating cancer and chemotherapy designed to fight said cancer that has side effects I’ve already discussed on this blog at nauseum. No need to flog a dead horse (as they say). I also have some neck issues that most people of my age get but that don’t afflict all of us in this demographic with pain. We won’t talk about arthritis now, shall we? 

So, I’m tired and generally not feeling that great. What should I expect? Duh! 

The past month has been especially unpleasant. My computer tells me that I’ve spent about nine hours a day of screen time. That seems about right. I’ve watched a lot of YouTube videos on everything from sailing to boat building, to prospecting, art, art history, lumber manufacturing, bushcraft, the La Palma volcano, people living alone in off-grid cabins, American Congressional politics, and more. Nine hours a day. It’s true that I also read quite a few articles from The Guardian, The Tyee, NPR, the CBC, and lots of internet-based news sources. And I’ve written a bit too. Still, I do a lot of sitting in my recliner, staring at my computer screen. I often think about things I could be doing like drawing, painting, woodwork, etcetera. Sometimes I do these things, generally followed by increased pain in my back and legs. That doesn’t encourage me to do more things. In fact, it actively discourages me from doing things. So, I go back to my recliner for another few hours. This pattern seems to be my fate now. I’m not sure I can do anything about it either.

Today is Sunday and this week is my chemo week. This is the fourth week in my monthly cycle and for the fourth week I don’t take lenalidomide, a drug I would normally take daily. On Thursday I take dexamethasone, valacyclovir, montelukast, and get one and a half hour of a Daratumumab infusion. That’s all no big deal. However, the effects of these meds will leave me feeling like I’ve got the flu for at least a week after. 

Tomorrow, I have to go to the lab for blood tests. So, VIHA has now closed all satellite labs in the Valley leaving only the lab at the hospital. There used to be three satellite labs, one in Cumberland, one in Courtenay, and one at St-Joseph’s hospital. All gone now. Apparently, VIHA can’t find enough staff. There are no appointments to be had either for tomorrow, and I need lab results tomorrow to be able to get my infusion on Thursday. I may spend the better part of the day tomorrow at the hospital waiting to get my blood tested. That will not put a smile on my face. But, we’ll see. I’ll report back on my next post.

Do I sound like I’m complaining and whining? Well, I am.

Slowly Falling Apart

~ Roger JG Albert

For this post, I decided to create a collage of quotes and commentaries from books I’ve been reading lately. They range from comments on death and dying to philosophy, culture, and the future. So far in this blog, I’ve refrained from commenting on American Congressional politics, but I just may go there soon. I told my sociology students year after year throughout my college teaching career that the American empire would fall, as all empires fall, not from external conquest but from implosion due to unresolved, long standing conflict. The American empire, specifically, will fall because of commodity production that depends on longer and more complex supply chains and failing profits. America is falling on its own sword of profits. Supply chains and economic processing zones in a plethora of ‘developing’ parts of the world have been an issue for decades while only recently making it onto mainstream media commentary and news. I’ll explain in a future post.

US politics has to wait. It’s a mess down there but it’s a mess everywhere on the planet at the moment. Let’s move on.

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Robert Sapolsky is one of my all-time favourite guys. He has a number of his Stanford University lectures on YouTube. He’s a neuroscientist who specializes in stress. He worked in the field for many years with Olive baboons in Africa. I have a video in which his work with the baboons is featured. On the topic of the human condition he writes:

“we are now living well enough and long enough to slowly fall apart. The diseases that plague us now are ones of slow accumulation of damage—heart disease, cancer, cerebrovascular disorders.” (from “Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping (Third Edition)” by Robert M. Sapolsky)

Now, ain’t that the truth! If you check out Stats Canada’s vital statistics you’ll find out that cancer is the leading cause of death in Canada. Actually, life is the leading cause of death everywhere, but as far as the observable evidence of bodily decay and death goes, cancer is determined to be the immediate major causes. Writing this makes me want to go back and binge watch Sapolsky on YouTube. Not only does he have a lot to say, but he says it in such an engaging way that binge watching is entirely feasible. I’ll be sharing more from Sapolsky later, but now on to another very different writer.

This is a quote from another book I’m reading that I want to share with you. Talk about falling apart! Robinson is a contemporary novelist writing in the sci-fi genre with dystopian tinges. He writes:

“Say the order of your time feels unjust and unsustainable and yet massively entrenched, but also falling apart before your eyes. The obvious contradictions in this list might yet still describe the feeling of your time quite accurately, if we are not mistaken. Or put it this way; it feels that way to us. But a little contemplation of history will reveal that this feeling too will not last for long. Unless of course the feeling of things falling apart is itself massively entrenched, to the point of being the eternal or eternally recurrent individual human’s reaction to history. Which may just mean the reinscription of the biological onto the historical, for we are all definitely always falling apart, and not massively entrenched in anything at all. 31 India” (from “The Ministry for the Future: A Novel” by Kim Stanley Robinson)

Most of this quote will be difficult for you to fathom because it’s out of context. It’s the last sentence that really matters. To help you out a little with the context of this quote, the ‘order of your time’, in the first sentence means that in the course of your life you feel out of control. You can’t go back, you can’t stay still. You can only go forward towards your death. This applies not only to us as biological entities but also to our cultural and social constructs which also are bound to come and go in a generally disorderly way. We cannot be ‘massively entrenched’ in life because daily existence makes a lie of any attempt to avoid moving toward death.

Now, more from Robinson in another of his sci-fi novels set far from Earth on a ship and a moon.

“Existential nausea comes from feeling trapped. It is an affect state resulting from the feeling that the future has only bad options. Of course every human faces the fact of individual death, and therefore existential nausea must be to a certain extent a universal experience, and something that must be dealt with by one mental strategy or another. Most people appear to learn to ignore it, as if it were some low chronic pain that has to be endured. Here in this meeting, it began to become clear, for many of those present, that extinction lay at the end of all their possible paths. This was not the same as individual death, but was instead something both more abstract and more profound.” (from “Aurora” by Kim Stanley Robinson)

Robinson is not a great writer in terms of composition, but he is a very perceptive commentator on the human condition. His novels are all about the fragility of humanity in the face of evolution and death, both on an individual and social level. Death denial is a consistent theme in human history and as a goal, has engendered a mass of immortality tales with “supernatural” characters as diverse as Zeus, Jesus, Shiva and a mess of lesser gods. These characters are our heroes who will save us from death if only we believe in them. But then we come face to face with evolution and biology which care not a wit whether we believe in them or not, and which just carry on.

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So, what about falling apart?

It’s clear that average death rates have risen consistently over the decades on the planet although in the US they’ve been falling for some demographics. Falling or not, on average we live well into our seventies. In fact, Stats Can tells me that if I live to be seventy-four I can expect to live another fourteen years. These are average life expectancies, of course. Millenia ago, living to thirty-seven years of age was considered average. People died of things then we seldom die of these days (such as appendicitis).

Sapolsky understands that the longer we live the more things can go wrong in our bodies. That’s self-evident the longer we live. If we get injured while young we can expect to heal and then just get on with things. As we (I) get older the healing process slows down.

There are a few very fortunate people, especially in the world’s richest parts, who suffer very little as they get old. I don’t think I know any of those people (well, maybe one or two). That said, there is an inevitable decline in capacity as we age. That doesn’t mean we should stop living and simply prepare for death because we know it’s going to happen. For me, I have much reduced capacity. At seventy-four I have maybe a quarter of the capacity I had at fifty. But a quarter is better than nothing. I still have shit to do! I’m falling apart, yes. In fact, I can’t fall much farther, but that’s fine, I still have a way to go.