death

I’m dying?

~ 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 12th, 2022. He gave his last speech to the House of Commons on December 6th. 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 6th and died on the 12thindicates 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

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). 

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

A Time to Die?

~ 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

~ 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.

Look at the forehead on that kid!
Me, maybe two years old
Me, five or six

Me in 1959 setting off for College St. Jean
Me at sixteen or so
Me doing television – late 1980s, early 90s.
Me not long ago

Chemo and life

~ Roger JG Albert ~ 3 Comments

July 27th, 2022.

It has been about twenty hours since my second infusion of carfilzomib. I take dexamethasone in conjunction with my infusion and that’s what I’m feeling the effects of predominantly at the moment. I’m dexed out, and I will be for a while yet. What concerns me the most is a repetition of the fever I got last Thursday as a side effect of carfilzomib. That fever at 38.9˚C sent me to Emerg for a long day on Thursday. The irony is that the fever is not caused by an infection, but that’s what the staff in Emerg will focus on. That’s what they know. And, of course, they do have to discount the possibility of an infection so they prescribe high doses of antibiotics. I don’t need antibiotics, but there ya go.

This time around, if I get a fever tomorrow AM (it started at 4 AM last week) I’ll know what to do about it. If my fever stays below 39˚C or so, I’ll stay at home, take a cold shower, use cold compresses and wait for it to pass. Last week the fever lasted maybe a day, and it fluctuated a lot during that time. It was funny in a way, because we went to Emerg for a second time last week on Thursday evening because my temperature had gone up to 38.9˚C. By the time we got there it had dropped to 36.6˚C. Well, that was a bit embarrassing. At that point they took some blood and put me in a room to then ignore me for 4 hours. By midnight we had had enough waiting and just went home. I don’t blame the Emerg staff. They couldn’t do anything in any case. But it would have been good to just send us home even if we hadn’t seen a doctor yet.

In any case, I’m a little apprehensive about the next 24 hours. I really need this chemo regime to work so I need to deal with the side effects and not let them force a stop to the regime. Carfilzomib is one of the last possibilities for me apparently. After that, I’m on my own. That means facing my myeloma without any help from chemotherapy. The consequences of that are well, terminal. We all get there, but I was kinda hoping to see my 80th birthday. That’s not rational, of course, because whether I die today or in 4 years makes little difference. After I’m dead, there won’t be any regrets. So, my hopes and wishes for a longer life are purely emotional.

August 3rd, 2022

So, as of now I’ve completed the first cycle of carfilzomib/dexamethasone treatment. No fevers after the first infusion. That’s great. The thing is I need this protocol to work. I won’t know if it’s working until I get my next blood workup in a couple of weeks. I meet with my local GP oncologist on August 10th, but we won’t have the results of my blood tests by then. We will meet, though, so he can assess how I’m doing. Blood work is only one factor in making decisions about treatment, but it’s an important one.

As usual, I’m dexed out after my last infusion of carfilzomib and 12 milligrams of dexamethasone taken orally. The next forty-eight hours will tell the tale regarding other side effects. I’m feeling alright given the circumstances. Strangely enough I have more energy when I’m dexed out, at least until it wears off and at that point I need to lie down and maybe get a little sleep.

I’m currently reading a book by Tom Robbins entitled Jitterbug Perfume. It hit the New York Times Bestsellers List in 1985. I read most of Robbins’ books back then along with books by John Irving and Kurt Vonnegut. Ostensibly about coming up with the definitive perfume, the book is all about the fear of death, immortality and dying. I can’t seem to get away from reading (and writing) about death and dying. That’s not surprising, really, given my time of life. Strangely, I feel I need to apologize for being so focussed on death and dying. After all, death, according to Ernest Becker, is one of the twin pillars of evil in our world, the other pillar being disease. It seems I’m immersed in the twin pillars of evil. So be it. It’s my life right now. Chemo is my life too at the moment. It’s a tough row to hoe sometimes because the end is nigh. But, it seems that we need to always focus on the bright side of life. Talk of death and dying are not welcome in a world that vociferously denies death and dying.

I know too many people right now with cancer, some with cancers much more aggressive than mine. Some want to talk about it, some don’t. Some have died recently, some are still dealing with their disease. Whatever type of cancer we have, we all face the same end. The ‘authorities’ claim that my cancer, multiple myeloma, is incurable, but treatable. Fair enough. However, the treatment can be quite harsh and whether or not it’s worth it is a question we still need to confront. That’s the case for all types of cancer.

As the song says, it’s summer time…and the living is easy. Yeah, right. For all you joung’uns with not a care in the world, you need to take this maxim and run with it. I’m not in a position to run anywhere. That’s fine. We’re all at different stages of life. Have a great summer.

The habit of life and a new chemo protocol.

~ Roger JG Albert ~ 3 Comments

July 18th, 2022

So, we went to the Hospital this morning to the nuclear imaging department to get a baseline assessment of how well my heart is pumping blood. That’s in preparation for my initiation into a new chemotherapy regime starting tomorrow since the one I was just on including lenalidomide, dexamethasone, and Daratumumab wasn’t working anymore and it was producing some very interesting symptoms like temporary paralysis or what my GP considered seizures. These ‘seizures’ didn’t last for more than an hour or two, but had lasting effects like extreme fatigue and headaches. I thought I might be having a stroke or something of that nature, but that’s not likely. In any case, my GP ordered a CT scan of my head. It found nothing! ⁉️He also ordered an MRI of my lower back. That will happen at the end of August. That might be revealing. I’ve had issues with my lower back since I was twenty years old.

Also this morning I injected one milligram of vitamin B12 into my left thigh. I do this every Monday because I have an inability to absorb B12 from food. Sometimes I inject it into my right thigh, just for variety. If you’ve never been tested for B12 you might want to consider it if you have a lot of fatigue. That may not be easy if you don’t have a family doctor, but worth it, if for nothing else, to discount it.

Tomorrow afternoon I go back to the Hospital for my first infusion of carfilzomib (trade name is Kyprolis). It has some interesting side effects and reportedly is hard on the cardio-vascular system, but is touted as a solid replacement for Bortezomib (Velcade). It’s relatively new on the market.

All the things I note above are to give me a longer life. That’s the goal. I’m into that, but eventually I’ll have to kick the life habit. We are creatures of habit. (see my note below) Are we ever. And the biggest habit we have is life itself. No wonder we are so reluctant to give it up.

July 19th, 2022

Well, tomorrow is today. Went to the hospital’s Cancer Care Centre for a 1 PM appointment for an infusion of carfilzomib. I got a low dose infusion, forty-four milligrams. I experienced no adverse effects that I noticed. My next infusion, next Tuesday, will be one hundred and fifty-four milligrams. That will be the ongoing dose I get every week for three weeks, then I get a week off before going back for another round of three weeks. So, my life is pretty much tied to the hospital at the moment. I may be able to alter my regimen a bit, but I don’t want to mess with it. I think that consistency is a major part of chemotherapy and I want this protocol to work for me for the foreseeable future. My foreseeable future is shrinking every day. That’s fine. That’s life. It’s interesting as I watch myself go through what little is left of my life, the recognition that my energy levels are dropping fast and that I can’t do things I recently took for granted. I have no regrets. I understand evolution and the need for death. I’ve played my part and will continue to play my part until there is just nothing left of me.

July 20th, 2022

Yesterday was a day filled with anxiety and doubt for me. A new chemo regime is always stressful. Will it work? Will I experience nasty side effects? Is this my last kick at the can? So many questions.

Thankfully, the crew of nurses and support staff at the Cancer Care Centre are amazingly calm and systematic. They patiently answer all of my questions, and this time around I had lots of them.

My infusions of carfilzomib are just a half hour long compared to one and a half hours for Daratumumab in my last protocol. However, for the first three weeks this time around they have me stay for an hour after my infusion for observation. That’s a good move because anything new like this is cause for caution. We were out of there by three thirty. Still, It’s an afternoon a week, and I need to be close to the hospital. No travel abroad, that’s for sure. I’m fine with that. Not much interested in travel right now in any case.

One thing I’ve noticed since I’ve been off of Dara and lenalidomide is that some of the symptoms I’ve been experiencing around my face seem to be attenuating. I can now feel my lips coming back online and my eyes don’t feel as puffy and buggy-outy as they have been for some time now. Maybe, just maybe, I’ll feel a little more ‘normal’ now. I hope this trend continues. The sensation around my eyes is particularly disconcerting. Anything to relieve that is good news. I’m feeling optimistic about carfilzomib but there’s a ways to go yet before we have any sense of whether or not it’s working to keep me alive.

I sleep well these days. That’s great. Of course, dexamethasone will mess with my sleep. I expect that and adjust as needed. It means that I may just read a little longer after I go to bed or wake up later and need to read a bit again before I can get back to sleep. I’m reading Agatha Christie at the moment. She’s such a good writer. There’s lots of murder and mayhem in her books, but some great problem solving too. Poirot and Hastings are principle characters in many of her books. Their interactions create a wonderful backdrop for their crime solving endeavours. Hastings is a great foil for Poirot. He’s not too bright but he is willing, and enthusiastic. The books do a much better job that the television adaptations of Christie’s work in terms of the dynamics of the Poirot/Hastings relationship. Read on. I paid one dollar on Amazon for all of Christie’s work on Kindle. What a deal.

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Just a note to end this post thing:

The fact that we are creatures of habit will be our downfall as a species.* We can’t seem to kick habits we know are bad for us. We know that fossil fuels are in the process of polluting the planet to such a degree that we may very well not be able to reverse the process. The pollution is what is killing us, not the fossil fuels themselves. We keep driving our cars and trucks. That’s a habit hard to kick because we also have a habit of spending money, and we have to get that somehow. Working for others (employment) seems to be the main way we do that, but contract work is also quite common. Employment is a relatively recent way of organizing labour. I wonder how much longer it will last. What I can guarantee you is that it will go the way of the dodo bird just as everything else does.

One huge issue we face is the generational lag that dominates our lives. We tend to think that we can live the way our parents and grandparents lived. We buy big fishing boats and huge RVs to wander around the oceans and roads like the 20th Century had never passed. We all want to live in detached single family houses (around here at least). Well, our parents did it, why can’t we? Maybe it’s because fish are disappearing at an alarming rate and gas is so expensive and polluting. But we’ll carry on because that’s what we know. We do feel anxious about it. That anxiety sometimes gets squished out of our minds in strange ways such as in ‘freedom’ convoys and ridiculous conspiracy theories. Oh well, steady as she goes. We all get to the wall sooner or later.

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*All animals are essentially creatures of habit. We all develop habits of life, some learned, and some tropismatic. We cling to them as long as we can. So it goes. It works as much for bees, chickens, and elephants as much as it does for humans.