Keep Busy, Don’t You Know!

January 14, 2023 ~ Roger JG Albert ~ 8 Comments

In my last post I mentioned that I’ve put together one hundred and fifty thousand words on my blog since I was diagnosed with multiple myeloma in the fall of 2019.

Looking back on my many posts, I’m now concluding that I’ve said pretty much all I want to say about my relationship with myeloma. There may be a few more details I can profitably address such as increasing levels of pain, and Its location, but I have myeloma, there’s no question about that, and it’s going to kill me. Now that I’m palliative and not under the care of any oncologists, I feel that all I have left to do is take a schwack of pain meds and wait to die.

Thursday, Jan. 12, 2023 – ~ 11 AM

This morning I got up at 7 or so in anticipation of going to the hospital for a lab visit. I was feeling just fine until I went into the bathroom to ablute. I got my gear out, but while I was doing that, I felt a twinge of pain in my ‘gut’ area (generally in my midsection, right through my body.) Soon, that twinge developed into generalized pain severe enough to take my breath away). Then it ramped up to a 9 or so on the 10-point scale. As soon as I realized that the pain had got to a 5 or 6, I started taking hydromorphone breakthrough meds. I took three times as much as I would normally take. I also took some dexamethasone (8 mgs). I was supposed to take 4 mgs). I also took some acetaminophen (1000 mgs).

It took an hour to an hour and a half to settle the pain down to a 4-5 on the 5-point scale although at the time I thought that the pain would never attenuate. I thought that dying at that point might be a good idea.

Pain, in and of itself is not a bad thing. It signals that something is wrong in the body that needs correcting. (This is a perspective inherent in the pathological end of the medical spectrum.) Pain may never be eliminated from a body.

Earlier I wrote that: ‘Now that I’m palliative and not under the care of any oncologists, I feel that all I have left to do is take a schwack of pain meds and wait to die.’ Well, what of that?

We all wait to die. But we’re not supposed to do that, don’t you know? It just isn’t right. We’re not supposed to just sit around waiting to die. Actually, it’s downright immoral to just wait around for anything, especially for dying. As humans we’re meant to move around, to get ‘er done! Ironically, we go on vacation every once in a while with a major goal of sitting or lying around doing nothing. There’s a contradiction there, but we can ignore it if we turn away and don’t pay any attention to it.

People do get freaked out when they see people in care homes not doing a lot of anything. “Look at all the crumblies, laying around, just waiting to die! They aren’t productive. They can’t even clean their own bums.” We’re supposed to DO something, anything. “The devil makes work for idle hands” don’t you know?

Yes, true on all counts. But before we get all self-righteous, we should consider what is so morally superior about doing things. I’ve already written somewhere that, following Ernest Becker, we think of wealth and health as the two most important moral imperatives in our lives and in our civilization (although we very seldom think in those kinds of abstract categories).

Since we’re already primed for thinking about things on a ten-point scale, can we think about morality and health on a scale? Maybe using a scale where a 5 is average (the mean in statistical language) and the extremes are at 1 and 10? What would morality and health look like on a scale of 1 to 10? Caution: this analysis is simplistic in the extreme but it works on a very basic, silly way.

The scale would look something like this I think: If you’re a 10 you’re buzzing with activity. You can’t stop. You run marathons every week. You have two jobs, or you make money by investing in stocks and bonds. The downside about being a 10 is that you’re possibly on your third marriage because nobody can stand to live with you for any length of time. Thus, if you’re not actively pursuing wealth and are not super healthy, buff and running marathons, you probably suck. At 1 you suck a lot, at 3, yeah, you suck, but not irretrievably. If you’re a 5 you’re probably normal in our world. You probably have a decent job, and you do some exercise. Nobody’s going to look up to you, but, conversely, nobody is going to look down on you either.

If you’re a 1, you’re a slob, a poor slob. (Wink, wink, nudge, nudge).

Let’s look at this ‘distribution’ statistically.* If you draw a random sample of the population on a characteristic like height. you should come up with about 68.2% of the population who ‘fit’ within one standard deviation from the mean, or the average. Leaving aside height for a moment, in moral terms, if you’re on the left side of this histogram, you tend to the sucky side of life. On the other side of the mean you tend to the above normal side of life. You’re nothing special, but you’re a nice, positive person. You know, nice and positive. Further up the scale and we can detect sugar dripping from your lips.

From: http://openbooks.library.umass.edu/p132-lab-manual/ Physics 132 Lab Manual by Brokk Toggerson and Aidan Philbin.

The further you get on the left side of the distribution, the suckier you get until you dissolve into a slimy pile of suck. It’s good that not very many people fit into that category because wading through slimy piles of suck could be downright tiring at times. The fewer of those around the better. Rain puddles are way better, in my opinion.

Well, this is all well and good. We judge people all the time, even the way we die. We live in a very strange world if you haven’t noticed yet. We are a very strange species.

If you want to stay on the good side of your civilization, keep busy and try not to let your knuckles drag while you walk down the street.

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*I wouldn’t take ‘statistically’ very seriously here. Just having a bit of fun. Oh, the histogram is fine, but fitting morality and health into it may not be so fitting.

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January 13, 2023.

Today is the fifth anniversary of my mother’s death. She died in 2018 at the age of 94. I miss her even though I barely saw her at all in the last few years of her life.

I’m dying?

December 18, 2022 ~ Roger JG Albert ~ 9 Comments

Funny, but I don’t feel like a dying man, nor am I eager to find out what that’s like. No matter what the medical experts think, I don’t feel as though I’m dying.

All the indicators are there: I’m dying. I’m old and I have myeloma. Myeloma is incurable and I’ve probably had it for at least a decade, but I was only diagnosed with it in the fall of 2019. At that point I already had lytic lesions (caused by myeloma) in my femurs, especially my right femur. I suffered through chemotherapy for almost three years before abandoning that course of action in September, 2022. Now, I’m palliative. That means that I have a medical team that aims to reduce my pain to tolerable levels. As soon as they hear ‘palliative’ many people immediately assume end-of-life, but the two don’t necessarily equate. I’m still mobile. I just had my driver’s licence renewed (although I rarely drive), I’m getting back into drawing and watercolour. I’m writing, obviously. I’m not bedridden.

We are all so different. Myeloma is especially idiosyncratic. In fact, there are several types of myeloma affecting individuals in various ways. One of the distinct problems with oncology today in an outback like British Columbia is that there are few resources that are dedicated to dealing with cancer. It can look like there are lots of resources, but there aren’t really when it comes to dealing with diseases like myeloma and its treatments. If you check out the BC Cancer Agency’s (BCCA) website, you’ll learn that almost 30,000 new cases of cancer were reported in 2019, the year I was diagnosed. It would take an inordinate amount of money and other resources to deal with that number of new cases, let alone the number of people already identified with cancer in the years before 2019. The numbers are staggering. The challenge daunting.

When I was diagnosed in 2019 I was put on a standard chemotherapy protocol. That didn’t work. It caused a rash around my midsection that was incredibly itchy. Considering the failure of the first protocol, I was put on another protocol, this time with three drugs. Anyway, over the next few months, the protocol failures outnumbered the successes so that, eventually, just a couple of months ago I quit chemo altogether. There may have been another drug I could have potentially used, but it would have required very close, ongoing, and individualized care. An oncologist at BCCA told me that they just didn’t have the resources to deal with that kind of individualized need, that is, for me. So, here I am, palliative.

I want to write about Jim Carr for a paragraph or two. He was a Canadian Federal Minister of International Trade Diversification elected in Winnipeg, Manitoba, first in 2015, then again in 2019 at which time he was diagnosed with multiple myeloma. He was in his late 60s at the time and received a stem cell transplant and dialysis along with chemotherapy. He died on December 12^th, 2022. He gave his last speech to the House of Commons on December 6^th. I can’t be certain about this, but it may be that Carr had a form of myeloma that specifically attacks the kidneys. His early treatment with dialysis indicates to me that his kidneys were failing, probably the thing that ultimately led to his death. So, was it myeloma or kidney failure that killed him? I have no information about any of his symptoms. I only have what was reported in the news. Still, a few things come to mind about his case. The news reports indicate that he was diagnosed in the fall of 2019, just as I was. It appears the chemo treatments didn’t work for him any more than they worked for me. In fact, I strongly suspect that had I not had any chemotherapy I’d be no worse off for it now. Chemotherapy must not have worked for Carr either otherwise he would have shown more positive results and lived longer.

The fact that Carr was up and about giving a speech to the House of Commons on December 6^th and died on the 12^thindicates to me* that kidney failure ultimately precipitated his death. The oncologist we spoke with at the BC Cancer Agency after I had decided to quit chemotherapy insisted that I would not likely die precipitously but would experience a slow degeneration of my health over a period of months if not years. The fact is that people die of myeloma for a number of reasons and over various periods of time between diagnosis and death. As I’ve noted before, myeloma is notoriously difficult to diagnose so people like me might have myeloma for years before being officially diagnosed. That might have been the case for Jim Carr too. For all I know he might have been one of those people who doesn’t easily talk about how he feels and would want to ‘tough it out’.

One observation around the news reports of Carr’s myeloma diagnosis is that Carr could fight this. Of course, people want to say ‘the right thing’, at times like this. Commentators from Trudeau to Joly to any number of politicians, federal and provincial stated things like: Carr has been “a leader in many fights, and this one is another one [he] will win.”** Well, no, he could not win the fight, nor can any of us. Besides, it’s not a fight. Myeloma is incurable. It can be treated to some extent, but even in the face of all the positive talk from the oncology community, nobody walks away from myeloma alive, and ultimately, no one walks away from life alive.

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*a rank medical outsider to be sure but a keen observer nonetheless of my own illness and that of others.

**https://www.ctvnews.ca/politics/trade-minister-jim-carr-diagnosed-with-cancer-says-spirits-are-high-1.4655348

Waiting is Depressing

November 10, 2022 ~ Roger JG Albert ~ 10 Comments

Well, it’s November 7th, 2022.

I’m not sure I’ll ever recover from the times I’ve spent in hospital over the past few months stewing in ERs with high fevers and infections all over the place. At least I’m home now and I can sleep as much as I need to without being plugged into an infusion pump. No more infusions for me!

Of course no more infusions means no more chemo means not even any remote hope of help with myeloma from chemo or radiation. Well, the chemo was killing me anyway so what was the point of that?

Last night at about 2 AM I stared out the window of my bedroom at the moon. If it wasn’t full it must have been very close to it. The bare tree branches in front of it produced a most pleasing atmospheric effect. Clouds at times partially covered it, but they moved surprisingly quickly too. If it isn’t overcast tonight I may try to take a photo or a video of it. [Ha! It was overcast this evening!]

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If I were to assess the current state of my mental health, and if I were honest about it, I’d have to confess that I’m somewhat depressed. I think it would be surprising if I weren’t depressed. Even bringing up the topic of depression is depressing. After all, how am I supposed to feel? I am facing death in the foreseeable future and the pain I experience every day as a result of myeloma is sometimes daunting. Lately, I’ve been provoked into taking more hydromorphone by a growing pain in my back brought on by chronic pain issues along with some new ones precipitated by a soft tissue growth in my back that will not go away, especially now that I’ve eschewed radiation treatments. I’m not ready for MAiD yet. I will know it when I am.

In an attempt to distract myself from my dire circumstances, I’ve been reading books about genetics, particularly Neanderthal genetics.

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It’s November 9th, 2022

It’s 8:30 AM. I’ve just had breakfast and I’ve taken my meds. I’ll probably fall asleep in short order, but that wouldn’t be the end of the world either. Carolyn will go out for a walk with her buddies this morning along with their dogs. Tilly loves her morning walks. It’s cold but sunny here right now. Later this trend will continue. It doesn’t matter to me a whole lot although it would be good to get out for a walk along the river sometime. Carolyn would walk. I would sit in the wheelchair and she would push me. I have no strength in my legs. At least the pain in my back is attenuating.

We saw my GP yesterday. It was a good discussion. We agreed that there was nothing left for me as far as treatments go. I will get all the pain relief I need and that’s important. I’m not one of those people who will suffer through pain. Oh, I was, but pain soon disabused me of that attitude. I will not face pain heroically. Piss on that.

I mentioned above that I’ve been reading books on Neanderthal genetics. The first one I read was by Svante Pääbo. He’s been doing research for decades not only on Neanderthals, but also on Denisovans and other kinds of ancient humans. Pääbo’s book is well-written and exhaustive of the process by which he and his team at the Max Planck Institute for Evolutionary Genetics in Leipzig, Germany came to unveil Neanderthal genetics. He won the 2022 Nobel Prize in Physiology or Medicine for his work. His book is autobiography to some extent. In it, he ‘confesses’ to being gay or at least bisexual. He has two children with scientist Linda Vigilant. Frankly, I care not at all about Pääbo’s sex life. I’m only interested in his scientific work (and making sure I type his name properly). It’s funny, though, how many of the science based books I’ve read lately do include biographical notes. It may be that editors think that readers want to see the human side of scientists. That may be so. Readers may feel for a scientist who loses a spouse to cancer or a parent to dementia. That may endear them to some readers. Not to me. It may be that editors suggested Pääbo include some biographical notes in his book. That’s fine if somewhat disingenuous. I see Pääbo as genuine. I read his book as well as some of his articles and I watched many videos of him online. He’s okay in my book.

I just finished another book on ancient humans and hominins. It’s by Tom Higham and it’s called The World Before Us. This book is good as far as content is concerned. It follows Pääbo’s fairly closely and that’s fine. The problem with this book is that it needs some proofreading. That may be a function of it being made into an e-Book for us Kindle readers. Frankly, I don’t know why it needs proofreading, but it does. It’s not cool to have sentences with verbs missing. Reading a book like this is not supposed to be an exercise in guesswork. Now, I’ve just started yet another book on the same topic. It’s by David Reich and is called Ancient DNA and the New Science of the Human Past. Reich worked with Pääbo on the Neanderthal project. He was part of the Neanderthal Genome Project Consortium. He was primarily involved in the computer applications related to the Neanderthal project. He’s an American, one of three who worked on the project peripherally. He was not directly involved in the Leipzig work. From what I’ve read so far, Reich has found a groove, an approach to the study of ancient humans that complements Pääbo’s book rather than trying to eclipse it.

It’s November 10th, 2022

It’s 8:35 in the morning. I’ve been working on this blog post for a few days now. That’s ridiculous. I usually write them in a day or even a morning if things are going well.

Part of my problem with writing at the moment may be the increase in opioids I’m taking which leave me less cognitively sharp than I like to be. It’s a toss-up. More opioids, less pain. Less opioids, more pain, but sharper brain-wise. Now, I’ve chosen more opioids, less pain.

Another reason for my writing lethargy may be that I’ve settled into a place where nothing much is happening: no hospital visits for treatments or lab work, no trips to Victoria, just days of sitting and sleeping. And waiting.

Waiting for signs of whatever, improvement or decline. It’s depressing.

Myeloma, Sex, and Dementia

November 1, 2022 ~ Roger JG Albert ~ 3 Comments

October 30, 2022

I hope you’ll forgive me if I’m not my usual chipper self today. I was in the Hospital again for a few days starting on Tuesday morning the 25th. On Monday afternoon I got radiation treatment on my back and right femur. That evening and especially during the night, I developed a high fever and once again I ended up on the floor in our hotel room unable to get back into bed. Paramedics came and they got me back into bed. They had to come back later to take me to Royal Jubilee Hospital in an ambulance. That’s the fourth time I’ve ended up in Emerg with a high fever after a treatment for myeloma.

The radiation oncologist at the BC Cancer Centre assured us that the radiation treatment had nothing to do with the high fevers I got on Tuesday after the radiation treatment on Monday. I have no reason to doubt her, except that it’s hard to deny the pattern here. It seems that every time I get a treatment for myeloma my temperature spikes and I end up in Hospital getting massive doses of antibiotics and other meds. I can assure you, though, that it will not happen again because I will not get any more treatment for myeloma, not chemotherapy, not radiation. It’s just too hard on me. My gut gets squirrelly, unsettled is too weak a term for how my gut feels. It’s still messed up and it’s Sunday. I can only hope that it gets better. Hope is all I have left. [It is better -Tuesday]

October 31st, 2022

I don’t mean to gossip, but my stay at the hospital this past week was replete with drama. Emergency Departments these days often stand in for family physicians. People with minor ailments are stacked in waiting rooms while often more seriously ill or injured patients are made to hold up in ‘rooms’, (that is curtained off areas) that are tiny. It’s possible to hear everything that goes on in these ‘cubicles.’ When I was taken to the hospital by ambulance on Tuesday 4:30 AM or so I was immediately introduced to the maelstrom. After a short time I was wheeled into a room that is set up for two patients. Carolyn was with me. We could hear everything that was going on in the area centred on the nurses’ station.

Enter a screamer. Make that an old screamer. She is eight years older than me but assailed by dementia. We eventually learned that she had fallen and broken a femur. She must have been in a lot of pain and she made it very clear to everyone within earshot that she was highly distressed. Initially, she was wheeled into the maelstrom, then for some reason the staff moved her into the room I was in. She screamed “Help, help!” over and over again, even if there was a nurse in the room. Then she would yell “No, no, no, no, no!” This went on and on and on at well over 100 decibels. I am not blaming this poor woman. She was in pain and she has dementia. But, man, did she have a set of lungs too. Every once in a while we’d hear a patient yell from across the room: “Shut up! People are trying to get some sleep here!” That didn’t slow her down at all.

November 1st, 2022

Finally, they got me into a ward on the 8th Floor of the hospital. That happened sometime after 11 PM on Tuesday. At the North Island Hospital in the Comox Valley I ended up on the 3rd floor a couple of times, in the same room too. It’s a large room for one patient. In the Royal Jubilee Hospital in Victoria, I was wheeled into a room set up for three patients. When I arrived, it was already occupied with two patients, a young man probably in his twenties, and an older man. Not sure how old he was. During my stay there I didn’t talk to the other two patients in the room, not once. The older guy was very ill and demented. He screamed most of the time, often at the top of his lungs, much like the screamer in Emerg. The nurses told him on more than one occasion to be quiet and the care aides admonished him periodically to “be nice to us.” He was not nice at all. He swore at everybody and wondered aloud why people were in his bedroom. He was most unpleasant, but I can usually tolerate people in his situation.

What can I say about the kid in the third bed. He was young, he could move around, and often went to the bathroom. I’m not sure why he was in the hospital, but I know that he was visited periodically by someone working on mental health and addiction issues. On my last night there, two young women came to visit this guy. They arrived around 7:30. One of them left around 9. The second one didn’t leave until 1 AM. You can draw your own conclusions about what happened behind the curtain separating his part of the room from mine, but it brings to mind a certain Paul Simon song. I know, it’s unbelievable but it did happen. It’s a good thing I had earplugs, because I still detected the odd moan and groan through the curtains. The nurses must have known she was there, but nobody did anything about it. Interesting. Not something I expected to experience in a hospital. Always a first time I guess.

Some (Moderately) Good News for a Change

October 14, 2022 ~ Roger JG Albert ~ 3 Comments

Yesterday late afternoon we had a short meeting with Dr. Nicol Macpherson, an oncologist at the BC Cancer Agency. As I expected it was a watershed moment in my myeloma journey.

Macpherson started by asking us to get him up to date. So, I laid out the disastrous weekend I experienced after my last Carfilzomib infusion on September 15th and suggested I was done with chemotherapy because it was all too toxic for me. Macpherson agreed. We talked briefly about a drug called selinexor that is being used for patients who are ‘quad- or penta-refractory’ meaning that they have had four or five previous treatment protocols that are completely ineffective, so that patients are not responding at all to treatment or are responding poorly. That’s me. We agreed that it was unwise for me to even consider selinexor as an option given my history with chemo meds, and especially given the fact that the BCCA doesn’t have the resources to fully support a high-risk myeloma patient like me with a need for very individualized and attentive care. In fact, all along my myeloma journey I’ve been treated like a regular myeloma patient when in fact I was always high-risk and subject to very severe adverse reactions to chemotherapy.

Macpherson also acknowledged that I was likely experiencing myeloma several years prior to my diagnosis, something that contributed to the restricted treatment options I now faced. If I had been diagnosed earlier, for instance, I may have qualified for an autonomous stem cell transplant. Not now, I’m too old. So, where do we go from here? As the cliché goes, only time will tell.

So, I’m still discombobulated. It goes with the territory. It’s difficult to keep things ‘together’ at a time when the universe is conspiring to tear it all apart.

I wondered aloud in the interview with Macpherson as to what kind of myeloma I had and how aggressive it could get. I speculated that I had lambda light chain myeloma* but he didn’t agree with that. He noted that the rise in my lambda free light chains was not a significant factor in the course of my disease and that I should not be concerned about falling over dead in the next few days. In fact, he assured us that my prognosis was for a very gradual decline in my condition, that I would most definitely live to see my 76th birthday on January 4th, and live for a significant time afterwards. That’s the justification for the title of this blog post wherein I note that we have ‘moderately’ good news: I’m not in imminent danger of dropping dead. It will take time. He even hinted at the possibility that I may regain some quality of life since I won’t have chemotherapy to completely mess with me. We’ll see. I guess taking longer to die is good news.

Now, I’m scheduled for some radiation treatments in Victoria. I have five days of treatments on my plasmacytoma, and one on my right femur where I have a large lesion. The plasmacytoma on my left side close to my vertebral column has grown a lot since February. Actually it didn’t exist until February, so they figure it’s time to shrink it. Hence, the radiation. I’ve had radiation before, on my jaw. This time it will be much more extensive but I hope it does what it’s supposed to do, and that’s reduce pain. It’s technically a palliative radiation.

On a last note, as I wrote in my last post, anticipatory grief is real and can be devastating, more so for survivors than for the person who is dying. In this CNN segment, Anderson Cooper discusses anticipatory grief in relationship to the decline and death of his nanny. Check it out. It’s worth it. The best way to view this clip is to go to YouTube.

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*There are several types of myeloma. Light chain myelomas are rare. I don’t really understand the chemistry of light and heavy chains, so I don’t expect you to, but it’s clear from what Macpherson told us that I have fairly stable bloodwork. My 589 mg/L of light chains is not an issue, because my myeloma proteins are normal. So there’s that.

MAID and Aggressive Myeloma

October 8, 2022 ~ Roger JG Albert ~ 9 Comments

So, things are moving along. To recap: I went into the hospital for my infusion of the chemo med Carfilzomib on September 15th. On the 15/16th during the night I didn’t sleep at all because I was in an altered state and shivering uncontrollably. In the morning, we called the Cancer Care Centre at the hospital, and they told Carolyn to take me to Emerg right away. It was a good thing she did because my kidney was shutting down. They kept me in the hospital for three days on an IV (lactated ringers) and a catheter, but you already know that. Fun and games.

Now, I’ve decided no more chemo for me. It’s been three weeks. It will be some time before I know what the result of that decision will be, but I will not recover from myeloma. Last week I had a chat with a palliative care doctor. She just called me a few minutes ago to see how I was making out with a new prescription for dexamethasone. We also discussed some more imaging for my leg and side (for a plasmacytoma) in preparation for some radiation therapy in Victoria sometime in the future, who knows when. Just don’t wait too long. The palliative care team at the hospital has been so kind and helpful.

The hospice staff has been wonderful too. They’ve laid out all the care possibilities to help as I get nearer to ‘the end’ as they put it. This afternoon Carolyn and I had a chat with a doctor that provides MAID services. I’m all set up for that. I don’t have a date or anything like that, but I do have all the paperwork done for when and if I decide it’s time. He was great. He’ll call me in six months to see how things are going if we don’t call him before that. At that point (April 2023) if I haven’t called for MAID, we will need to redo the forms.

An aside: the weather has been sunny and dry. Warmish too. We really need rain, but this is quite pleasant. I’m sitting in the living room but with the door to the deck open. Such an agreeable late afternoon.

Saturday, October 8th, 2022

Before I forget, I want to note that I learned a new term yesterday talking to the MAID doctor: anticipatory grief: Anticipatory grief refers to the sorrow and other feelings you experience as you await an impending loss. It has some benefits: It may help you find closure, settle differences, or prepare yourself for the pain of letting go. This kind of grief can come with lots of other emotions, including anxiety, guilt, fear, and irritability.* There is no doubt that I am feeling anticipatory grief, and so is my family. Of course, my grief is for the end of my life. For my family, the grief will extend after my death but in a different form.

It’s disconcerting to be so unsure of the future. We have no idea what the estimated time of death is. We’ll discuss that with the oncologist this Wednesday. He may have some insights by looking at my bloodwork. The most concerning number, although there are a few, is the rise in my lambda Free Light Chains. Now that marker and its number won’t mean anything to you, but what it describes is the amount of myeloma protein in my blood. The reference (normal) range for this indicator is 5.7 mg/L – 26.3 mg/L. My blood as of three days ago is 589 mg/L. On December 13, 2021, it was 11.7. Then it went up to 174.2 on June 27, 2022. Since, it has gradually made it up to 589 mg/L. It can’t go much higher without damaging my kidney.

In fact, my kidney is already compromised to some extent but it’s still hanging in there. I would speculate on my survivability now, but I think I’ll wait until we have a chat with my oncologist on Wednesday. I know that my type of myeloma is particularly aggressive, so we’ll see.

Strange as it may seem, if you came for a visit today, you’d probably say: “Hey, you look good!” I would respond: “Looks can be deceiving!” The disease I carry is all on the inside. There isn’t a lot of evidence of it on my body. My insides are scary though. Good thing you haven’t got x-ray vision like Superman, otherwise you’d see the mess in there.

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*From: https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855

One Day at a Time.

October 1, 2022 ~ Roger JG Albert ~ 4 Comments

Who knows how much time I may have left to live. A week, a month, a year, two years, it’s all the same to me because after I’m dead, I won’t be around to regret or celebrate anything that happened to me while I was alive, including dying.

I had my last chemo treatment on September 15th. That’s it as far as chemo goes for me. On the 16th I had to go to the ER to reverse the damage to my body brought on by the chemo meds I took on the 15th. I wrote about my weekend from hell on my last blog post. I don’t need to go over it again. Now, I’m hoping that the damage caused by the chemo meds can be reversed sufficiently so that I can have a modicum of a life back. Frankly, I don’t hold out a lot of hope, but who knows? There are some hopeful signs.

Today is September 30th, 2022.

So, I’m only two weeks without chemo meds, but it seems that I already have more energy than I had while I was on chemo. I’ve had to bump up my dose of hydromorphone, but I’m not sure if that will have to continue into the future. The hydromorphone is essential for dealing with the pain I feel in my thoracic region. That pain originates partly from the surgery I had in 2002 to remove my left kidney, but the soft tissue mass that’s invading my back and left side may very well be contributing as well. I don’t know. All I know is that I experience a low level throbbing pain all the time emanating from there and every once in a while I get a pain spike that is intense to say the least. I’m no masochist, so I take pain meds.

Because I’m not on chemo anymore, it’s unlikely the BC Cancer Agency will be concerned with my blood work. But, I’m concerned with it! It’s true that my symptoms should tell us how I’m doing and possibly give us some indication of how much time I have left to live, but blood tests are much more definitive and might give us a heads-up on how my kidney is doing, and how much crap I have in my blood. My GP doesn’t seem too keen on blood work either. Oh well, we’ll see about that.

I guess my biggest concern now is the uncertainty around how long I might live. In a sense it’s not a big concern because I should know when I’m on my last legs, but I may not. At the end I may decline quickly, especially if my kidney packs it in, but I may find that my last few days stretch into weeks or months. Whatever happens, because of the uncertainty, it doesn’t make a lot of sense for me to plan ahead, except in a general sense, for MAID for example. So, I live one day at a time. I get up in the morning and expect that I’ll still be alive in the evening when it’s time to go to bed. I watch news programs on YouTube, but I’m not invested in them at all. It seems as though the world is coming apart at the seams, but all the seeming chaos is moot as I face my own dying.

I can’t believe it’s the end of September. We’re moving into the Fall. The big maple in the front of the house is just starting to turn. The leaves change from green to a pale pink on the underside and bright red on the top. They fall almost in unison and cover the ground with a carpet of pink and red. There is dying in this process, but not death, not yet. The tree is preparing for its winter sleep, and will grow a fresh crop of bright green leaves come March and April. Death is in its future but it’s not for now.

The sword ferns are a different story. They have spores that are spring mounted on the undersides of the ‘leaves’ and that are flung out in a desperate search for a bit of fertile ground to sprout and grow. Chances are that none of the millions of spores will find a propitious bit of ground to grow into a new fern. Not to worry though because the fern itself will sprout new growth come Spring and just carry on. The ‘old’ leaves will turn brown and be displaced by the new leaves. They will create nutrients for the plant as it carries on. There is dying here, but not death, not yet. Death will come much later when the plant itself has no means of recreating itself, when it is exhausted and when the ground that is its home is no longer capable of sustaining it.

We have what’s left of a cascara tree in our yard, about six metres from the south corner of the house. It was a beautiful tree with a sculptural quality and a large canopy when we moved here in 2002. The tree itself was probably ten metres tall. We figured it had been growing on the property for forty years. Then one day it just up and died. The leaves all fell and the bark peeled off in strips. Its skeleton still stands. We hang Christmas decorations on it now. It lost its leaves every year like all the other deciduous trees on the property only to come back strong and vibrant every Spring, until that sad day a few years ago when it died.

Plants aren’t afraid of death and dying. They don’t feel fear. Yes, some people have anthropomorphized plants and have attributed to them human like feelings and motivations. That’s just plain silly in my mind.

Truth is, no matter who or what we are, we die. Simple. But like most animals we fear dying. Trees and plants in general have a different relationship with dying and death than animals do. They cannot flee from threats to their lives. They die every Fall only to be revived in the Spring, but even they ultimately meet their end when they reach the limits to growth. It could be argued that we follow the same trajectory except that we can successfully flee from threats to our lives, at least to some extent.

To me, cancer in old age is natural, and part of the deterioration that many organisms experience in the final stages of life. I love my life, but it must end. My body has decided that its exit from life will be via cancer. How can I argue with that? I tried to argue with it by using chemotherapy, but unsuccessfully. Now, it will countenance no significant opposition. Such is life.

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Not Dead (Just) Yet.

September 20, 2022 ~ Roger JG Albert ~ 17 Comments

From the many comments I received after my last post A Time To Die I obviously left the impression that I was on my way to an imminent death. I guess the concept of ‘imminent’ is what the issue is. Without intervention I have no idea when I will die although I can set up a situation through Medical Assistance in Dying (MAID) whereby I can determine the time and place of my death. I’ve filled out the papers so that I now have the MAID option. The papers don’t obligate me in any way, and I don’t have to go through MAID if I choose not to. I don’t see any downside to being prepared by filling out the necessary paperwork well before I decide to use MAID or not.

This past weekend was a momentous one for me. I almost died for real, fulfilling the implied (somewhat exaggerated, certainly) conclusion of my last post.

After my infusion of Carfilzomib last Thursday, the first of my third cycle, I got some familiar symptoms: spiking fever, the shakes, insomnia, and pain, lots of pain everywhere in my body. By Friday morning I was in serious trouble. In spite of drinking copious amounts of water during the night, I could not pee, and didn’t even feel the urge to pee. It was obvious something was very wrong. At that point Carolyn called the Cancer Care Centre at the hospital. They advised her to get me to the ER as soon as possible. So, off we went. The Emerg staff got to work on me without delay, wheeling me into a room close to the nursing station, a room I had been in before on a previous occasion for the same reason.

They ran numerous blood and urine tests. They concluded that my kidney was functioning at less than fifty percent capacity. They installed a catheter and hooked me up for an infusion of liquids (lactated ringers). The ER doctor minced no words (strange turn of phrase) in telling us how close I was to dying. I filled bag after bag of concentrated dark and thick tea-coloured pee. I was formally admitted later in the evening and transported to the third floor, again to a familiar room across from the nursing station. Once there, my kidney quickly rebounded and resumed its more or less normal operation. By Sunday evening, after the staff was ensured that I had no infection and that my ordeal had been brought on strictly by an adverse reaction to Carfilzomib, I was discharged. The intent was to keep me in the hospital until Monday, but that was unnecessary at that point. I called Carolyn and she picked me up. I was one happy guy.

As I write this it’s Tuesday morning, September 20th around 9:20 AM. I feel that I’m slowly recovering from the weekend’s trauma, as much as an old man with myeloma can.

One thing I vividly recall from my three days in the hospital is that the many clocks all run on time, marking the seconds by the slightest but silent advance of the second hand. For long periods of time I was fixated on the clock and its inexorable movement forward. Sunday evening all I could think about was going home. The clock couldn’t move fast enough.

Another thing I recall is the change in my body odor. I was quite surprised by this. I shouldn’t have been because my entire body chemistry was under assault. I tried to wash frequently but being attached to my ‘med pole’ I called Ted made it very difficult to move around and get to the washroom. Of course, with my catheter I didn’t have to worry about going to the washroom to pee. That was kind of nice, actually.

Anyway, I should get to the crux of the matter here. I’ve decided that I can no longer continue receiving chemotherapy. Clearly it was killing me. In 2019 chemotherapy was offered to me as a way of mitigating the effects of myeloma. Instead, it exacerbated them for me. That’s not true of everyone receiving chemotherapy for myeloma or for other forms of cancer. Chemotherapy works for many people. I’m just one of the unlucky ones who has adverse reactions to chemo drugs, and I mean all chemo drugs. So now, I am palliative. I may still receive some treatment for my myeloma but it won’t be chemotherapy. It may be radiation or surgery, but even those options will have their limits.

I’m so fortunate in having very supportive family and friends. Our daughters came over from Vancouver on Friday to be with their mom and to come visit me. Coming from Vancouver with no ferry reservations is daunting, but I’m sure happy that they managed to get over here. It was definitely touch and go for me. I needed the support, so did Carolyn. My sister Hélène and her husband Roger came for a visit on Saturday. That was very pleasant and a welcome diversion from the hospital routine.

In conclusion, I must say that I received most excellent treatment at the Hospital this time around. That hasn’t always been the case, but this time we were very impressed by the care I received. Thank you so much CVH staff!

A Time to Die?

September 8, 2022 ~ Roger JG Albert ~ 21 Comments

Well, howdy there internet people, it’s me again. Visited my local GP/oncologist this morning. He showed us images of the growth that is happening alongside the left side of my spine. I think it’s trying to replace the kidney that I lost in 2002. It’s big enough. Just kidding, of course. The growth is pretty impressive, let me tell you. I’m not feeling any ill effects from it at the moment because it hasn’t gotten into my spine. If it had, I’d be paralyzed. It is large, however, and nothing to sneeze at. Probably not immediately life threatening, but I have enough other issues to think about that are threatening my life, not the least of which is my age.

I’m feeling very strange at the moment. I am still sentient from what I can tell, although I’ll leave it up to others to confirm. Sentient or not, I’m close to death. From what I’ve read about Medical Assistance in Dying (MAID) people are often sentient until the last minute. Maybe I can shoot for that although being zonked out on morphine has its appeal too as I slip off into death.

My local GP/oncologist is in contact with the oncologist in Victoria at the BC Cancer Agency who looks after my file, and he (Macpherson in Victoria) doesn’t support the idea of my getting another shot with another chemo protocol. I’m done as far as he’s concerned. He expects more chemo would just be futile and would not enhance my life chances a whole lot. I will know the results of my latest bloodwork late next week and that will help me decide as to whether or not I push for a second opinion and for another chemo protocol. Whatever happens, as Carolyn points out, even a new protocol would likely give me just another nine months of life at best, so what’s the point?

It may be time for me to accept the increasingly obvious fact that my life is done. Well, I may have a few more months to live, but not years, certainly not years. I don’t know, but going off chemo may give me a few months of relief from side effects. That would be nice. Already, I’m starting to feel my lips again. Lips I couldn’t feel, constant sore eyes, and plugged ears were Daratumumab/lenalidomide side effects. Since I stopped infusing Dara things have settled down. Carfilzomib has its own issues, but so far I have been able to deal with them. Whatever happens, I could still take hydromorphone for pain, and maybe even increase my dosage. I mean, what the hell do I need a brain for anyway? [Well, maybe for writing a few more blog posts!]

Then, when the time comes, I just give the Hospice Society a call. I may opt to die in a Hospice bed, but I may decide to die at home, although I don’t thing I want to put my family through that. Caregiving is tough enough as it is. It’s true that watching me die might be okay with them. I don’t know. We’ll have to discuss it. MAID is definitely an option. We have discussed that.

I, along with many of my siblings and relatives, sat around and watched my mother die in her bed at The Dufferin in 2018, the care home in Coquitlam she lived in for many years with my father before he died in 2007. She had dementia quite badly for the last few years of her life, and as she lay there dying she had no idea about anything, which is consistent with the last 25 years of her life. The nurses just kept pumping morphine into her veins. That kept her quiet. I suppose I could tolerate an ending like that, but I don’t have dementia. I would probably be conscious and sentient until the end. That’s fine as long as I got the morphine too. I’m not a big fan of pain.

I told my local GP/oncologist that I may go for a second opinion. I may. I may not. Probably not. It all depends on how I come to accept my end times. I find it hard to even think about death and dying. It doesn’t come easily to my imagination. Oh, every once in a while I lay in bed just before falling asleep in the evening and I think “What the heck? When it’s done, it will be done. No regrets.” Then, I get scared. I imagine myself in a cardboard box on my way to the crematorium on the hill. That’s fine, but I need to know that I’m really dead before that happens. I’m not keen on feeling fire on my skin. Of course, I’m being silly. I will definitely be dead by then. My box is on a conveyor belt. There are a couple of bodies ahead of me laid out in fancy coffins. They’ll burn real good! I’ll have to wait to get turned into ash powder. But it will happen. Later, someone will give my family a package of ashes that will have been me. I don’t care what they do with it, but I hear that the family has a cemetery plot in Vancouver. My wonderful niece arranged that. So, that’s it.

Goodbye life.

PS: I’ll write my obituary sometime. Not just yet. You’ll have to wait for it a while longer.

Memory Works With A Little Effort

August 31, 2022 ~ Roger JG Albert ~ 9 Comments

I’m not sure if you’ll be able to access this Atlantic article or not, so I’ll just summarize it a bit for you. It’s about memory or remembering and whether you remember events in the past from the first or third person perspective. I would expand the argument to include imagined events in the future.

When you remember a past event, say one that was particularly notable, do you remember it as you initially experienced it, or do you see yourself in it as a character, almost as an actor, in a play?

I’ll die soon. Soon is an indeterminate word, mind you. I’ve already commented in previous posts about the fact that I’ve not done all that well with chemotherapy. It seems that I’m probably a high-risk cancer patient in any case. I’ve been subjected to a number of different chemotherapy protocols. Now, according to the oncologist at the BC Cancer Centre in Victoria in charge of my case, I’m running out of options. At the moment I’m on a two-month trial with a drug called carfilzomib (trade name Kyprolis). So far, I’m entirely underwhelmed by its effectiveness. The next month will tell the tale. I’m not very hopeful given my recent bloodwork and my reactions to the chemo drugs. But, I haven’t completely abandoned hope. I may still get to live a few more months.

Recently I had a bit of a discussion with the family about MAID (Medical Assistance in Dying). It’s not something I need to consider immediately but eventually it will become an option, particularly when the levels of pain and immobility outweigh quality of life issues for me. I see no need to lie in bed in pain awaiting more or less imminent and sure death when there is the option of assisted suicide. I’ve tried to imagine my dying moments. I can do that from the third person perspective, but definitely not from the first person perspective although I know what it feels like to go under general anaesthetic. I imagine MAID as like going under general anaesthesia but never waking up again. I see myself lying on a gurney with a doctor setting up the meds and then injecting me first with morphine or something like that before administering the killer drug. I can imagine that. I can remember in the first person going into the Hospital to have my kidney removed in 2002. Now that I try, I can also see those events in the third person. Strange.

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It’s amazing how many incidents and events I can recall if I put a little effort into it. I have seventy-five years of them to capture. Lots of fodder for remembering. I could write a book, although there is a lot that I would not share with you or anybody, private things.

This post is about me as I age from 1949 or so until now. My life isn’t over yet, but I’m getting close to a complete lifetime. I can track my parents’ lives, at least as far as major events go. My father was born in New Brunswick (1911), my mother in Alberta in 1924. They both died at the Dufferin Lodge in Coquitlam, my father in April, 2007 and my mother in January, 2018. Noting their dates of birth and death means nothing, of course. They are merely life’s parentheses. It’s what transpired between those dates that makes a life. The same goes for me, and you. Photographs tell a bit of the story, but in a static kind of way.

In the first picture, I’m standing there with my sister Denise. She was born in 1943, four years before me, to a mother who subsequently died in 1945 giving birth to what would have been her first son. Denise died on December 13th, 2004 of cancer. I’m not sure where this picture was taken. It looks like it could be in Sapperton, not far from the Royal Columbian Hospital. I would welcome correction on this from anyone in the family. By the time this picture was taken the family lived at 634 Alderson Avenue in Maillardille (Coquitlam).

In this picture I look to be maybe two years old. Denise would have been six. I am endowed with a natural Mohawk hair do. I still have it. I don’t remember anything of what was happening when this picture was taken. I was way too young. The photograph does nothing to jog my memory.

Denise and I always had an interesting relationship. She was pretty tough and I was mouthy. She threw a knife at me at the dinner table when I was probably a pre-teen. She missed, but it was close. That was memorable and I see it in the third person. But during my late, listless, teenage years, after returning from College St-Jean and not knowing up from down, I lived with her and her then husband, Roy, for six months or so, and often looked after the kids (which they had adopted). They had a fairly large home in Vancouver, off of 41st. The basement was made out to look like a TiKi lounge. Strange now, but not so for the times.

I worked with my father at a couple of re-manufacturing plants in Surrey and Langley. But I also worked at a planer mill in Fort Langley. I got drunk on occasion with some of the guys from work. It’s amazing we didn’t kill ourselves on the way home from work. One of the guys drove a convertible and that’s what we came home in most of the time. Mom and Dad had to know but they never said anything.

From the time I left College St-Jean until I enrolled in courses at Douglas College in New Westminster in 1970 or so, I worked at a number of odd jobs, mostly in the lumber or related industries. For a few months I worked at a plywood plant on Braid Street in New Westminster. I remember the smells and sounds of that place the most, but I also remember (in the first person) the work I did, piling pieces of veneer in bins in preparation for pressing them into plywood. The last job I had before going to Douglas College was at a sawmill in Marpole. I worked there for maybe six hours total. I recall being required to ‘clean up the chain’ of massive timbers. I did that for a bit but then I slipped and had one of the timbers fall on me as I fell off the platform. I could barely walk after that so I dragged myself to the first aid shack. Nobody there. So I struggled to my car (an Austin Healey Sprite) and drove myself to the hospital. I had back surgery then. Dr. Hill (I recall his name to this day) removed a disc in my lower back. Worker’s Compensation (now Worksafe BC) paid for everything including my first year of studies at Douglas College. There was never an inquiry as to what happened at the mill and as to why there was nobody in the first aid shack when I went there for help. Workers Compensation just paid for everything, no questions asked.

I find the series of photographs here helpful in some way in jogging my memory. The early ones don’t help at all but the later ones do. The one I posted of me doing my Knowledge Network tele course is still available to me as a video so I can go back and see myself over and over again if I so choose. I have many more photos too, but I’m not going to post all of them here.

All I wanted to do here is give the flavour of my life as I grew up, then grew down. We all have individual experiences of life. I often think of the many thousands of people who have died in conflict over the centuries, their lives often cut short by machetes, as in Rwanda in 1994. I suppose if a long life is a good thing, then I’ve had a good life.