Remembrances

I was going to write ‘remembrances of times past’ as the title of this post. Then, I realized, of course, that would have been redundant. As far as I know, we can only remember events in the past. So, remembrances, yes. Of times past, of course, always. No need to state the obvious. 

That reminds me that many years ago when I was still at university and having a difficult financial time of it when I got a job on a salmon troller for the summer. I don’t want to talk about that experience in detail although it was loosely tied to graduate work I wanted to do at UBC. It was rather painful in several ways, one of the main ones being that I had to leave Carolyn and the kids. The boat that I was on was called the Morning Sunrise.  Now, I may be a little thick, but I don’t recall the sun rising at any other time of day. It always rises in the morning. I think the skipper, who was not particularly erudite, nor was English his first language, just got impatient when he went to get his commercial fishing licence and blurted out, when asked by the snotty clerk: “Well, what IS the name of your boat?” “It’s the Sunrise…” “No, you can’t have that name. It’s already taken.” “Okay, then, the Morning, ah, Sunrise, I guess.” “Okay, then. The Morning Sunrise it is.” Well, shit. He fished with a few other guys in a loose compact of maybe a half dozen boats, mostly of Scandinavian extraction (including my now deceased former brother-in-law on the April Fool), but I never heard him being made fun of for the name of his boat. I certainly never made fun of him. It turned out he was a fine gentleman even when he realized that I was not fit to be on his boat because I was so lonely, I was fit to be tied. So, he took the boat into Skidegate on Haida Gwaii and put me on a plane to Vancouver. 

I just stated above that I didn’t want to discuss that summer on the Morning Sunrise. (How quickly I can change my mind!) But that whole trip in 1981 (or 1982) was memorable in a number of ways, so maybe I will write about it a bit. I, and a kid from Winnipeg, were the deckhands. Neither of us had any fishing experience, really. We arrived in Prince Rupert by plane and took a taxi to the docks. The cab was rear-ended on that short trip, and I got whiplash, which meant that I was plagued with headaches the moment I stepped on to the boat. I had been hoping for a good summer, making a few dollars to tide the family over a rough spot, but that wasn’t to be. I went home empty handed. Still, standing in the cockpit of a fifty-foot troller in rising seas of the Hecate Strait with waves crashing over the wheelhouse into the cockpit was unforgettable. Without getting into too much detail about how a fishing troller goes about its business*, learning how to set the lines, especially the pig lines, distracted me momentarily from my raging headache and my loneliness. We set out three downriggers each with multiple lines attached at intervals of varying depth on each side of the boat. I had the port side, Winnipeg buddy had the starboard side. The pig line consisted of a piece of foam about forty centimetres square that had to be attached up the line to keep it on the outside of the rest of the fishing gear. I never really figured out how that worked. I didn’t have a sense of it like the kid from Winnipeg did. He was very good at getting his lines out and getting them back in too. I was always slower than him. I learned that not long after I left, he left the boat too. No doubt a better offer came along, I imagine. Summer on the fishing grounds could be a case of musical boats. The better skippers, the highliners always found it easy to get the best, experienced deckhands. The skipper on the Morning Sunrise was known as a hard ass, so getting deckhands was more of a problem for him. One other skipper I knew chose his deckhands carefully. He was gay and wanted a like-minded deckhand aboard. Fair enough. I may have stayed out there longer if I had had a more congenial skipper. Who knows?

I’ve always thought that I had a terrible memory. Then I realized that if I worked at it a bit, I could recall many events in my life, some I might be proud of, others not so much. I may just explore some of my more memorable moments over the next few blog posts. One thing is for certain, I’ll not make this an exercise in self-flagellation. That would be unfair to me and to my family. There were good times and there were less than good times. Studying at Simon Fraser University was a good time for the most part. I was there from 1973 until 1980. The two years I spent at Douglas College before that as a student were good too. It was a brand-new college, one of many being established in BC following the California model. Our classrooms were portables at McBride and Eighth street in New Westminster. They leaked like a sieve, but we didn’t care. This was the early 70s and we were excited to learn. I started on a Master’s degree at SFU in 1976, worked as a teaching assistant too as well as getting a contract to teach a course at Douglas. I eventually taught at Kwantlen College too for a time. Then I got a job at North Island College (in 1983) and stayed there until 2012. But that’s only a slice of my professional life. In the meantime Carolyn and I were starting a family and other things were happening that would be interesting to share.

So many stories to tell. 

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*For a sense of how a troller works check out this YouTube video: https://www.bcsalmon.ca/faces-of-bc-salmon-fishing/salmon-trolling-on-the-north-coast-of-british-columbia

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.

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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 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!