Month: November 2022

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. 

________________________________________________________________________________________

*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!]

____________________________________________________________________________________

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.

_____________________________________________________________________________________

It’s November 9th, 2022

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

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

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

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

It’s November 10th, 2022

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

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

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

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

Myeloma, Sex, and Dementia

~ Roger JG Albert ~ 3 Comments

October 30, 2022

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

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

October 31st, 2022

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

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

November 1st, 2022

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

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