@myeloma

It’s my Birthday.

~ Roger JG Albert ~ 11 Comments

Yeah, it’s my birthday. No big deal.

I’m starting on my 77th year. That seems like a long time, but time is relative. I just finished a book by Steve Brusatte, The Rise and Fall of the Dinosaurs. Time in the context of dinosaurs is measured in millions of years. Even then, two million years is a relatively short period of time. Now, I’m reading another Brusatte book, The Rise and Reign of the Mammals: A New History, from the Shadow of the Dinosaurs to Us. It’s all very complicated stuff, and it’s certainly true that mammals got a leg up following the crash of the Cretaceous sixty-six million years ago thanks to an asteroid strike in what is now the Gulf of Mexico. In the next few weeks I’ll look for a good book on the differences between the prokaryotes and the eukaryotes and the evolution of the latter into us, eventually (after hundreds of millions of years).

So, to say that I’ve lived for 76 years is not saying much. The context is what’s important.

I think most people would agree that I’ve had a good life. Being a white male has given me substantial advantage to start with, and I was able to build on that foundation to create a decent life for myself and my family (albeit, one based on patriarchy).

This post will be very short because I’m not motivated to put out a regular length bit of writing but I’ll put out a couple of posts soon enough. I need to comment on oncology and the few other things. I don’t have an active relationship with myeloma at the moment. Obviously the disease is have a field day in my innards and I want to write about that. But that’s for another day.

How Long Does He Have?

~ Roger JG Albert ~ 7 Comments

I don’t know, but I wonder if anyone has asked any of my family or friends that question about me. It’s a common question in movies or on television ‘medical’ dramas. Of course, it’s virtually impossible to answer that question unless the circumstances have been set up ahead of time to determine the time of anyone’s death. In most circumstances we just don’t know. In some we do. Maybe you have a gun and are about to shoot a hapless victim. In that circumstance, you would precisely know the day and time of your victim’s death. Somebody on death row in the U.S. would know when they were scheduled to die, but with all the appeals possible, some death row denizens have been there for sixteen years and more. Still, eventually appeals run out and off you go to the abattoir. Or you might get up in Toronto some dreary Monday morning expecting to spend the day dispensing cash and stamping statements as a teller in a bank downtown, only to be stabbed to death leaving a subway train at your usual stop.  

You might have come across the same story I did about the young woman (31) stabbed to death in the subway in Toronto on December 9that around 2 PM. I have no idea if she was a bank teller, that’s my invention, but it would be possible. The fact that she was stabbed at 2 PM is significant. There are many reasons why she would be out and about midday. Her killer, 52-year-old Neng Jia Jin, required a Mandarin translator for his court appearance and was given a list of people he was not to contact even though he was held in custody. He killed the victim, Vanessa Kurpiewska, randomly. Who expects to get up in the morning, get dressed, maybe make plans for the holidays, have a coffee, go off to work, take an afternoon break to do a little shopping, and end up dead on a subway train? On the same day the CBC reported a deadly shooting in Mississauga and every day the papers are happy to report on any number of random shootings and stabbings across the country and in the US. Regular, typical, unspectacular deaths generally appear under the radar, in the obituaries, not on the front pages. 

So, a significant number of people die randomly every day from any number of causes, some endemic, some violent, and all unpredictable. It may happen that I get surprised by my death, or at least by my dying. Probably not, but it’s not in the realm of the impossible. My palliative care team can track the deteriorations in my body, some of which are clear signs of impending death. Kidney failure is a sure sign of imminent death. When I came close to dying a month or so ago after my last chemo treatment, it was because my kidney was shutting down. That’s an indicator of major bodily shutdown. I remember clearly in the ER at the time that the docs asked us what we wanted to do if my kidney did shut down. We made it clear to them that no heroics were to be used to keep me alive. Palliative care doctors are really attuned to changes in the functions of major organs. I’m fortunate in that I have a strong heart and no indication of any cardio-vascular issues. 

We (Carolyn and I) drove to Campbell River last week to see an orthopaedic surgeon about the lytic lesion in my right femur. The palliative care docs flagged it as a potential major issue because it seemed to be growing. The orthopaedic surgeon, Deke Botsford, concluded that the changes that had occurred over the past few months in my femur would not likely cause a pathological break, that is one that would happen with no provocation (a fall, for instance). Anyway, we decided that I would get an X-ray in a month or so and that we would have another chat at that time. Fair enough. No problem for now.

I’m reading a book that was kindly given to me by a very thoughtful neighbour. It’s called: With the End in Mind: Dying, Death, and Wisdom in an Age of Denial by Kathryn Mannix (2018). I’m almost finished it. Mannix is a physician and a Cognitive Behaviour Therapist (CBT). Her approach to death and dying is psychological and biological. My approach you will realize, if you’ve followed this blog at all, leans much more to the cultural, social, and anthropological side of things. Of course, I also inject lots of personal anecdotes and experiences. That’s where Mannix and I cross paths. Her book is a compendium of stories about the end-of-life experiences of a whole range of people of all ages in Britain. My blog is a mix of things, but it leans heavily on my experiences in hospitals, with medications, and with medical staff. Denial, for Mannix, refers to how individuals come to accept or reject the fact of their imminent death. For me, following Becker and others, denial is considered primarily a cultural phenomenon which rubs off on every one of us via religious or magical traditions and practices that we rely upon to convince us that we are immortal. Our traditions, practices, and protocols act as collective reinforcement of our beliefs in our immortality. Émile Durkheim, the first French sociologist and education theorist, wrote about the importance of what he called collective effervescence as an important structural component of social coherence. 

I guess if I have any institutional or cultural connections with denial mechanisms, they would be associated with science, especially physics and chemistry. If I have any belief about what happens to my body after I die, it’s that all the atoms and molecules that make up my body will return to the biosphere, to be taken up by organisms in their process of growth. My consciousness will evaporate to nothingness.  So, it goes. 

This Blog

~ Roger JG Albert ~ 7 Comments

November 30, 2022 (8:35 AM)

If you’ve been following this blog since the Fall of 2019, you will know that I was diagnosed with cancer (multiple myeloma) at that time and that ever since I’ve dedicated the blog to exploring my relationship with ‘my’ cancer and its treatment. Lately, I’ve been compiling my blog posts into a Word file. Word tells me that I now have close to 150,000 words in that file. I’m sure I have double that in the blog since I started publishing it in 2012, the year I retired from teaching at North Island College. That’s a lot of verbal regurgitation. 

It’s been a ride. 

Looking back over the years it’s obvious how much of a rollercoaster ride it’s been. The thing is the rollercoaster has two primary seats and a number of others that can also be involved. Of course, I’m in the lead seat. If I didn’t have myeloma there would be no rollercoaster, but since I do have myeloma, any rollercoaster rides I’m on also involve my family. Carolyn is my wife but also my primary caregiver. It has not been easy for her. My daughters who both live in Vancouver have made every effort to support Carolyn and I on our ride. They have come here which is highly disruptive of their lives, never a word of complaint. One of my brothers and one of my sisters who live on the Lower Mainland have come to visit and help out. I have a sister who lives in Nanaimo. She and her daughter, Janice, come as often as they can and bring meals for us to relieve some of the caregiving burden from Carolyn. We are very fortunate also in that we have fantastic, generous, kind, and supportive neighbours. 

I can only go by my own experience but living with myeloma for anyone (and its treatments) means that some days we feel fine (more or less) and other days we feel crappy. Not long ago, after my last disastrous treatment and hospital stay, I spoke with my oncologist at the BCCA in Victoria. I was determined to stop all treatment, chemotherapy, and radiation, which I did. It seemed that I would always get a high fever and some form of infection following treatment. Last month I wrote about how my last chemo treatment almost killed me. Of course, stopping all treatment has its consequences.

As I noted in a previous post, the upshot of ceasing treatments means that I now have to face myeloma head on without the help (or hindrance) of treatment. I am now considered palliative, meaning that any treatment I get now aims to deal with pain alone. So, tomorrow late afternoon I go to the hospital for a CT scan of my right femur. The palliative care doctors want to know what the state of that femur is to better decide on what to do about it. They may recommend surgery. When we know more, we’ll decide what to do. I’m not sure what to think at this point. 

December 1, 2022 (8:00 AM)

It’s probably the coldest day of the year here today at -5˚C. Snow is deep in the yard and we’re expecting more today and tonight. It’s quite bright out now but that can change quickly, just like how I feel. 

Yesterday I introduced the role of caregiver. Caregivers, family, volunteers, or paid members of palliative care organizations are essential for people who are sick or somehow disabled and who can’t always look after themselves, who can’t cook, feed themselves, do laundry, wash dishes, etcetera. Caregiving is tough, one of the toughest jobs around. Imagine going to work not knowing what will be expected of you when you get there. Never mind all the bum wiping and other physically related work that is expected of you. Some of us who need care are quite large and heavy. Caregivers risk injury to themselves as they care for their charges.

For some caregivers who provide in-home care the issue is mental illness or dementia. Imagine going to work and immediately getting verbally assaulted and insulted by the person you’ve come to help. It can be the same in the hospital. While I was there, I often heard caregivers, nurses, and aides, get yelled at and abused in a number of ways by patients. Or the issue can be that the patient may have had a stroke or are otherwise incapable of communicating verbally. Professional caregivers are normally prepared for all exigencies and requirements of the work, but there are certainly times when the work gets overwhelming and tiring.  There are several resources available through government and non-profit organizations that can help caregivers. I list some of the more obvious ones here along with their web links. This Island Health website contains a lot of links to other resources. I don’t feel the need to replicate all of them here. A principal non-profit is the Family Caregivers of British Columbia. It is funded by Island Health, United Way, and the Province of British Columbia. 

December 2, 2022 (12:20 PM)

There is a weather warning posted online by Environment Canada for our region indicating that there might be up to a 15 cm dump of snow today. So far, the snow has been light but it’s picking up now. I’m still expecting to go to the hospital for a CT scan at 5:15 PM, but we’ll see. We haven’t heard from the hospital yet. We’ll see. 

December 3, 2022 (10:00 AM)

Heavy snow out there. It snowed a lot last night. I did go to the hospital for a CT scan. It was snowing hard, but David did a stellar job driving the car, which is great in the snow. The hospital seemed deserted, but that’s an illusion, of course. The wards are full of people behind closed doors, and I’m sure the emerg was busy, but the reception was empty, suitable for bowling.  

December 4th, 2022 (9:22 AM)

So, I wrote on December 1st that it was the coldest day of the year. Well, today is even colder at -6˚C. It matters not to me, not in the slightest. I sit here in my recliner, nice and toasty. I can look out to the beautiful scene outside, but from the comfort of my living room. Works for me. I have good meds and it seems that I’ve been able to figure out how best to take them to minimize pain.

I’m still old and I’m still dying, but at least I have a lot of people supporting me. So many people die alone, violently, and/or in excruciating pain. I’m going to try very hard not to be one of those people. I aim to die peacefully with some good meds to deal with any pain issues I may have. When my ma was dying, the nurses came frequently to give her a shot of morphine. That seems like a good way to go although my mother wouldn’t have been able to tell you one way or another. From her bodily movements I don’t think that she was in a deep state of peace. She was agitated at times. It was almost like watching someone in REM sleep having involuntary limb movements. 

One of the generous neighbours I mentioned above gave me a book to read. Carolyn just finished reading it and found it delightful. Now, I’ll read it. It’s entitled: With the End in Mind: Dying, Death, and Wisdom in an Age of Denial. It was published in 2018. The author, Kathryn Mannix, is a British palliative care physician. As you can tell from the title, this book is right up my alley. It’s not an academic book, so no references. You won’t be reading any quotes from Ernest Becker* in its pages, but Becker is everywhere in the book as the scholarly backdrop to a book like this. 

I’ll leave this post for now. It’s long enough and I need to get on with reading Mannix so that I can discuss her book in my next post. If you are so inclined and you want to read a little scholarly background material for a book like Mannix’s, check out the first couple of dozen posts in this blog, the ones specifically about Becker and The Denial of Death. 

Bye for now.

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*This is the first in a series of posts on Becker’s and related work. I published it in 2014: https://rogerjgalbert.com/2014/01/28/ernest-becker-1-of-mouths-digestive-tracts-and-anuses/.

Bits and pieces of this and that.

~ Roger JG Albert ~ 9 Comments

November 15th, 2022

Starring blankly out over the front yard a couple of days ago at our driveway that stretches about sixty metres (two hundred feet) to the road an image suddenly came to me of a road covered in red, yellow, and orange leaves much like our driveway is this morning. Unlike our driveway, however, it was clearly a one-way road and a dead-end to boot. I daydreamed about walking along this road, but as I walked, it became obvious that the end of the road was not clearly defined. It seemed to recede into a fog away from me with every step I took. 

So, my brain is being metaphorical on me, sending me covert messages about my future. 

We (Carolyn and I) had a meeting with a palliative care doctor a few days ago. I’ve been feeling abandoned by the oncologists that have overseen my case for the last many months. I guess I needed some assurance that I would get effective care from the palliative care team at the hospital here. I don’t mind going down a one-way, dead-end road, but I’d rather not go it alone if I don’t have to. 

It may be that abandoning radiation treatments has hastened my ultimate demise, but it couldn’t be for long. I remember vividly the spiking fevers I got after my last radiation treatment and the ridiculous stay in hospital while the ER doctors chased an infection that I don’t think was ever there. That doesn’t mean that it would happen again, but I’m loathed to take that chance. Myeloma is an infection, a growth of unwelcome protein in the blood that takes up space in my bone marrow and doesn’t prevent ‘good’ protein from doing its job. That’s what it is, an infection, and it will cause all kinds of effects including fevers. I just don’t need the treatment for myeloma to be worse than the disease itself. Now if I get a fever, I’ll know it’s because of the myeloma itself and not one of its treatments. 

And now we wait.

I’m not sure what we’re waiting for either. It may be a turn for the worse, meaning the reoccurrence of a nasty fever, which this time, won’t go away. Or it may be an attenuation of symptoms and a reprieve of sorts from the worse of the nastiness brought on by chemotherapy. Whatever. All I know for certain is that I don’t know. Well, there are things I do know for certain: I’m seventy-five, soon to be seventy-six. My maternal grandfather, Georges Leguerrier, died in 1975 at the age of seventy-eight. His wife, Julianna, my grandmother, died in 1989 at the age of 91. My father died at 95 years of age in 2007. My mother was 94 when she died in 2018. So, generally, my family is quite long-lived. It may be that I take after my maternal grandfather, Georges Leguerrier, who died at 78. I can’t imagine I’ll live as long as my other grandparents or my parents, for that matter. 

November 19th, 2022

It’s Saturday, 7:38 AM, and very cold, (-2˚C) at least for here. (Yesterday was even colder) But it’s crispy and dry too. The air is perfectly still. The house is warm and cozy. 

I’m feeling okay despite the increase in opioids I’m taking.* The pain in my legs seems to be attenuating. I walked to the bathroom without my cane this morning and it was not a problem. Now, I’m sitting in my recliner, and I don’t have any pain to speak of. It feels good for a change. I’ll walk down to the studio in a bit to put on some heat. I can’t let it get too cold or the paint freezes and becomes useless. Who knows, I may be able to use it sometime. 

It’s strange, but in my half-sleep this morning just before getting up, I flashed on me working on a painting that’s half finished in my studio. Twenty years ago, or even ten years ago, I wouldn’t have thought twice about going down to the studio to work on that painting and maybe a couple of others I have half finished. I may still be able to paint, maybe with watercolours for the most part, but only if I don’t have to stand at the easel. I think I can work that out. Still, I have to remember that what I was able to do without too much thinking involved ten years ago, I now have to seriously ponder. I may have the knowledge to do something, but I also need the stamina, and it’s the latter that is lacking in my life now. It’s simple really. For some time, I thought that knowledge was all that I needed. Then I realized through trial and error (much error) that no, I need to be able to sustain activity for some time if I want to get anything done. Getting older (and weaker), whether in good health or not will inevitably mean less energy and stamina. So, now, I don’t feel bad about napping in the afternoon, and maybe even in the morning if I’m feeling particularly sleepy. Napping is fine for people my age. Not all of us nap, but for those of us who do, we have to just accept it and relax about it. 

I could say the same thing about dying but dying and napping are obviously not the same. There is a certain finality in dying that is just not there in napping. 

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*Opioids contribute to pain relief, but they also can leave me sleepy, dizzy and cognitively dull. This morning I woke up without a lot of pain and fairly sharp (if I do say so myself). 

Waiting is Depressing

~ 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.

Some (Moderately) Good News for a Change

~ 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.

Discombobulated

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

~ 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.

~ 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.

~ 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!

Myeloma: a Killer by Degree

~ Roger JG Albert ~ 3 Comments

[I wrote this post in May 2022, not that long ago. I reread it and I think it bears reposting. I keep getting bad news on the myeloma front. I had an MRI last Sunday and it showed a growth, a tumour if you like, growing on my lumbar spine and extending upwards to the left side of my thoracic area half way up my back. It’s a fairly new thing, and is ten centimetres long, five wide, and seven thick. So far I haven’t felt any ill effects from it except that my legs are beginning to feel slightly numb. That’s not good, and just adds to the peripheral neuropathy that already leaves my feet in a constant state of pain, pins and needles, and spasms. At least it looks like I’ll be continuing on my carfilzomib protocol into September.]

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

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

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

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

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

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

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

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

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

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