Memory Works With A Little Effort

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.

__________________________________________________________________________

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

Carfilzomib and Buttle Lake

Wednesday, August 17th, 2022 – 2:30 PM

Just got back from the hospital for the first infusion of carfilzomib for the second cycle of this protocol. It went well, but as usual, I’m dexed out. Given this was my second cycle I didn’t have to stay after my infusion for an hour of observation. I had to go to the lab yesterday for bloodwork and the results were available today for us via MyHealth. Things seem to be going moderately well from the looks of my bloodwork. I have some reduction in my paraproteins (not that you should know what that means) which is good news but my kappa free light chains are going up. That’s not good.

However, we did a fair bit of reading about carfilzomib and one of the nasty side effects of that drug is renal toxicity. Given that I have only one kidney, that’s not great news. We just have to hope for the best.

As I said, I had to go to the lab yesterday for tests. What I didn’t say is that we spent the last three days at Buttle Lake in Strathcona Park for a bit of camping with the family. Yesterday, we had to race back to Courtenay to get on the lab waitlist. Around noon I started out at 29th on the list as we came into Campbell River but when we got to the hospital in Comox an hour later, I was down to 10th place which is quite acceptable. I didn’t have to wait too long to get my blood extracted.

Sunday, August 14th, 2022 –

We packed up yesterday and this morning. We were in four vehicles. I rode shotgun in the truck. It hauled most of the food, the banana boats and me. I won’t identify individual family members here. Suffice to say that there were enough of us to pilot four vehicles along with some passengers. We’ve been camping at Ralph River campground on Buttle Lake for upwards of thirty years. We’ve had some wonderful times on that lake, and particularly at that campground. It was such a pleasure getting back there. Frankly, I doubted that would ever happen.

From 2019 a few months before my diagnosis

I already posted this photo on this site, but I decided to post it again because it tells a story of how we had such great fun improvising and adapting the canoe with outriggers, a sail and electric motor. We’ve had the canoe for over forty years. We’ve had such great times with this canoe for decades! This boat didn’t come with us on this trip. I’m not ruling out the possibility that it will again feel the waters of this lake on its keel. Chances aren’t great, but we’ll see.

When the picture above was taken, so was the picture below.

Buttle Lake at Ralph River

You can see that these stumps are a predominant feature in the landscape. Who knows why the loggers left them (probably no need or profit in removing them) but they did and I took the opportunity to draw and paint them*. I can’t remember exactly when I drew them, maybe it was 2014, but that doesn’t matter.

You can see the water surrounding the stumps. They are maybe a half a kilometre from the campground and there are connecting pathways. Below is a photo of one of those pathways, the one they built for the movie See with Jason Momoa. That pathway and surrounding terrain used to be clear from the campground down to the stumps with a gravel base and not a lot of vegetation as you get closer to the lake. Now, as you can see, it’s flooded and there’s lots of vegetation, but the rocks that define it are still clearly visible.

The lake must be at least three metres above what it was when I took the above picture in 2019. The stumps are nowhere to be seen. They are all underwater. What a dramatic change! What a metaphor for life! Things can change so quickly and dramatically.

Main pathway from lake to campground.

Monday, August 15th, 2022 – 6:55 AM

I was awake for some time before 6:55, but that’s when I got up. The sky was pure blue. The previous evening it was overcast and spit a little rain. This morning was beautiful. Our campsite was open to the lake but the path to the lake was impassably muddy and crawling with Western toadlets to boot. We really had to go around to Jason’s pathway to get to the lake. I set up a chair in our campsite (called a gravity chair)facing the lake. For some time I watched the sun hit Mount Philips across the lake. Eventually, the shadow cast by the mountains behind us on Mount Philips reached the lake, but by then I was busy doing other things and I got distracted by this as I pushed myself vertical in my chair:

Cedar Boughs.

I actually took this picture later in the day after the sky had clouded over. I stared at this sight for a long time. There is an odd quasi-symmetry to the branches and needles. I contemplated drawing this, but I just couldn’t garner enough energy to do it. Instead, I took pictures and stared. I found looking at these boughs soothing. My pain dissolved. I relaxed completely. Such a great feeling…at least for a time!

I can’t thank my family enough for making it possible for me to get back to this lake and this campground. I’m an old man now. Many of the things we did for years like camping and messing around in boats are just not possible for me anymore. Maybe if it were only a question of age, but it’s not. Myeloma and chemo complicate matters immeasurably. Still, when I was at the lake I could much more easily recall so many pleasant experiences we had there. I love that place. It’s so much better to feel love for this place and for my family than to dwell on my health or lack of it.

______________________________________________________________________________________

*See my art blog for images of the Buttle Lake stumps in ink and pencil: https://rogeralbert.blogspot.com/p/drawings.html

Chemo and life

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.