I taught university level courses in sociology and criminal justice for over 30 years but now I'm retired and at 72 was diagnosed with multiple myeloma, bone marrow cancer. This site is now a chronicle of my journey with myeloma.
I spoke with my new BC Cancer Agency oncologist yesterday. We had a nice chat about our alma mater and the weather, but we also discussed my myeloma. Of course we did!
He told me that I am effectively in remission. There is no trace of the myeloma protein in my serum. That, I would say, is great news. That doesn’t mean that I don’t have cancer anymore. Myeloma is incurable but it is treatable. The hope is that I can go some time without needing chemo.
While I don’t have any trace of the myeloma paraprotein in my serum, I still have issues related to myeloma and I have to live with the side effects of the chemotherapy I was on between December 2019 and June 2020. I have lots of peripheral neuropathy or nerve induced pain and weakness in my legs. I also have back pain for which I need to take opioids. My oncologist has ordered a spinal MRI to see if we can pinpoint the specific cause of the pain. I do have residual pain from surgeries I had on my lumbar disks and from the removal of my left kidney in 2002 because of kidney cell cancer. To help us figure it all out I have pain specialists (palliative care doctors) on the job. With them, we’re trying to determine what kinds of medication I need to take and how much.
It’s complicated because there is some pain that is muscular in origin, other pain that comes from problems with connective tissue and then there’s nerve-induced pain. Different meds are required for the different types of pain. For example, opioids aren’t much good against neurological pain but they work on muscle-based pain and to some extent on connective tissue pain. Right now I’m on two main pain medications and a couple more on standby. Hydromorphone isn’t much good for neurological pain but it works for my back pain although the dose is critical. My age is working against me too. It’s normal in ageing to have weakened muscles and degenerative connective tissues. My body is ganging up on me! But I’m fighting back!
One thing I aim to do is increase my physical exercise as much as I can. That means walking more. I have to be careful because my balance isn’t great, but I can walk maybe two kilometres a day using one or two canes. I can also, on rainy days, use our semi-recumbent bike for twenty minutes a day. We also have light weights I can use and stretchy cables (?).
That’s enough for now. I just wanted to give you the good news. Today is such a great fall day. This red maple in front of the house is living up to its name. Every day it gets redder, then it seems like overnight all the leaves are on the ground.
AND, haha…there’s a snowfall warning for tonight and Friday morning at higher elevations (which could mean Cumberland). ❄️🌨❄️❄️❄️⛄️ Sleep tight!
Re: the art of tying knots on the scourge so as to experience the most exquisite pain so as to deny our bodies and bring us closer to God.
When I was twelve years old in 1959 my parents sent me off to a private Catholic boarding school in Edmonton, the Collège St. Jean. I boarded a CN train with some forty boys from British Columbia destined to make up a substantial minority of boarders at this school. No way I was going to be left behind. I’m sure I begged my parents to allow me to join my peers in Edmonton. The College was run by Oblate priests (Oblats de Marie Immaculée), a Catholic missionary order founded in France in 1816.
In this post I don’t focus on my attendance at this school although that is a topic deserving of its own exploration. No. My interest here is to highlight aspects of the life and activities of one of the Brothers who worked at the College from its inception in 1908-11 until 1947, the year of his death. His name was Frère Antoine Kowalczyk. He was born in Poland in 1866, moved to Alberta in 1897 and died in Edmonton in 1947 after serving the College for some thirty-six years. During his tenure at the College he was one of two Oblate Brothers.
Oblate Brothers acted as custodians, gardeners and caretakers. They did the grunt work around the place along with a contingent of nuns from the congregation of Les Soeurs de la charité d’Evron who fed us, did our laundry (poor women), and looked after the infirmary. Oblate priests were our professors (with the odd exception) and served as the College administrators.
Brother Anthony (Frère Antoine) died in 1947, a few months after I was born so there was no chance I would ever meet him. The good Brother would not be alive to see the major expansion of the College in the 1950s, but the College did everything it could to keep his memory alive because Brother Anthony was special. Normally, he would have received a nice funeral and would be buried in the Oblate cemetery in St. Albert, not far from Edmonton, and then all but forgotten. That was not to be for Brother Anthony. Yes, he did have a nice funeral and yes, he is buried in St. Albert but he has not been forgotten.
Because of his exemplary life, Frère Antoine is being considered for sainthood and has been for quite some time. The local Catholics would love to have a real honest-to-goodness saint come out of their community. We all want our heroes. Brother Anthony was to become one of Edmonton’s Catholic heroes and saints-to-be.
I recall reading a number of extremely laudatory tracts about Frère Antoine when I was a student at the College and I still clearly remember the grotto that he built to the Virgin Mary which probably still stands next to the College’s administration building. Some of his personal effects were on display in the main College building. They are what interest me the most about Frère Antoine along with the efforts to have the Vatican declare him a saint.
The glass encased display of his personal effects included his rosary and breviary along with more mundane items such as his cassock, candle holders, and some tools. For me, the most striking item in the display was his scourge, the whip he used for self flagellation. When I first laid eyes on the scourge at age 12 or 13 I was astounded as to why anyone would want to inflict pain on themselves as Frère Antoine obviously had. How could that be? Pain was a bad thing, wasn’t it? Well, maybe not always.
Pain is important as a signal that something isn’t quite right in the body. People who cannot feel pain may hurt themselves in a myriad of ways without knowing it. The condition called congenital analgesia is extremely rare. Less rare is the situation in which people deliberately hurt themselves. People, mostly youths, cut themselves with razors, knives, and other sharp things for a myriad of reasons. I don’t think Brother Anthony whipped himself for the same reasons ‘cutters’ do.
For Brother Anthony, whipping himself or self-flagellation was a means of punishing or mortifying the flesh. Why? Because the flesh is weak now isn’t it? Succumbing to its many potential delights in eating, sex, and just plain moving is considered by Catholic theology as a (if not the) most important source of sin in the world. The seven deadly sins are, in fact, mostly about denying the pleasures of the flesh. After all, the flesh dies while the spirit lives for eternity as the story goes. Most religions in fact promote the spirit as the vehicle for eternal life. I guess it’s just an easy step from avoiding sin to actively ‘mortifying’ the flesh, that is to punish it physically for being the source of death.
But Brother Anthony wasn’t content with a wee bit of self-flagellation during Lent. He spent time with his scourge. What I remember of it, his scourge consisted of several leather strands with knots tied carefully at intervals to intensify the pain and help to cut the flesh. The story is that he whipped himself regularly as he fought with his devil flesh.
I refer to Brother Anthony here specifically because he is a flagellant of my past, but the institution of self-flagellation is not just a Catholic thing. It’s also a practice of Shia Islam and Judaism although in no religion is it standard practice. It’s generally practiced by the over-zealous as is certainly the case in the Philippines and elsewhere. Brother Anthony certainly was zealous and it strikes me that the aim to canonize him is partly based on his zeal.
Reading about the myriad ways in which people deliberately cause themselves pain has not led me to reconsider my attitudes towards pain. For me pain is not something I experience with joy. It is a reminder to me of the weakness of the flesh for sure and of my mortality. That’s fine. I accept that.
If there’s one thing that is common to all human culture it’s the denial of death, and consequently, the promotion of the spirit as the essence of being and as our way to immortality. That’s not a universal value to which I subscribe so my pain and I have to live with each other ’til death do us part.
Fall Colours in the Garden
Our garden is flush with colour from the earliest days of spring and well into the Fall. Now is the time for dying and dead leaves to put on a show, extending the dominance of colour before bare branches impart a new dynamic to the garden along with some evergreen trees and shrubs that are just that, ever green. Below you can see pictures of blueberry bushes in full Fall splendour along with some maples, red and Japanese, Virginia creeper, and sumac.
Under the Microscope
Nothing extra special about this set of images. The first one is of my blood. It’s red, not surprisingly. The blue is a photo of a rough blue paper. The other three are yellow and black. The multicoloured one is in fact black to the naked eye, black being the sum of all colours. The one with only red dots is a light yellow and the one with red and green dots is a darker yellow.
It’s October 5th, 2020. That means it’s pretty much a year since I was diagnosed with multiple myeloma. I expected that this month would be my last one in my first course of chemotherapy. As it turns out it was not my last month because I decided a couple of months ago to forgo my last two cycles of chemo treatments because of the neurological damage I was experiencing. Chemo was doing away with the myeloma protein in my blood but it was also killing me. That’s not good, so we decided to stop.
Who knows what happens now. I went to the lab last week for some blood tests in anticipation of visits with oncologists later this month. I have the results: they show that my Lambda Free Light Chains (a type of blood protein that is used as a marker for myeloma) are trending up, now out of the zone the medical profession has decided is the reference (some would say, normal) zone. That is not good news, in my opinion. The increase in my Lambda Free Light Chains hasn’t been dramatic, but it sure concerned me.
I contacted Dr. Malcolm Brigden’s office in Victoria. Brigden is the oncologist assigned to me by the BC Cancer Agency. His assistant, after consulting with the good doctor, advised that there was no clinical reason for me to have my meeting with said Dr. Brigden brought forward as I had requested because Light Chain numbers go up and down all the time.
That’s not what I’m seeing in the test results but I’m no oncologist. Still, I’m seeing a definite trend in one direction.
So we wait until October 21t to drive to Victoria for a fifteen minute appointment with said Dr. Brigden. The issue for me (for us, including the family) is where I’m at in terms of treatment. Brigden will decide what to do now that I’ve been off of chemotherapy for three months. He may decide to do nothing and wait for my next set of blood tests. He may decide to get me started on another course of chemo. I expect he’ll choose the former, that is he’ll choose to do nothing and wait for test results three months down the road. Whatever. I have some research to do about how Lambda Free Light Chains react in remission but before a new course of treatment is initiated. You may detect a note of cynicism in my composition here. If you did, you’d be right. I’ve read a fair bit about oncology, both the research and clinical aspects of it and I can’t help but feel that clinicians are all over the map in terms of treatment options and approaches. There are no real standards in the field. That is partly due to the idiopathic nature of myeloma. There is no one treatment option for patients in relapse.
I guess I need to be patient. I find patience a little difficult to achieve these days, but I need to cultivate a ‘letting go’ approach to this ‘problem.’
Sarah Kerr died on October 3rd after maybe six years of suffering with colon cancer. In 2018 she gave an interview to the Comox Valley Record in which she claims to have had over 60 chemo treatments over the previous five years. That’s just not the way it works for myeloma. I got one over the last year. In the same interview she reports on various different alternative therapies she tried including vitamin C infusions (@$200/week). Her quality of life was severely affected by her chemo treatments.I didn’t know Sarah very well. She was more of an acquaintance than a friend. I knew her from my pre-retirement North Island College days with Sarah making pots and just generally being around the Art Department. She was a Facebook friend too. We had a large number of FB friends in common.
The last time I spoke with Sarah was a few weeks ago on my way into the Cancer Care Centre at the hospital here. She was just heading out after a treatment. Neither of us had much time to chat. Sarah was obviously much distressed. I don’t know anything about colon cancer but I know she suffered tremendously from it. It was unrelenting. No more, Sarah.
Dennis Renaud died on September 30, 2020. He worked for many years at the Courtenay Return-it Centre. I got to know him a bit over the years partly because we were both French-Canadians from outside Quebec. He had Joseph in his name too. Many French-Canadians of a certain generation do. The women have Mary somewhere in their name.
The thing I noticed about Dennis was the way he worked. I’m always impressed by people who work in jobs that could be seen as extremely mundane and boring, but who seem to try to get the most out of every action they undertake as they work. It was obvious to me watching Dennis work that he was always looking for the most efficient way of moving cans and bottles along from the desk to the roller conveyers behind him. He could count bottle and cans very quickly and he never lost a beat. He was one of the most efficient workers I knew.
I didn’t know Dennis socially. He was a FB friend for some time, but he wasn’t that active on social media. In April of this year he was diagnosed with Stage 4 lung cancer. Five months later he was dead. He was two years younger than me. A good, former Catholic, sort of French Canadian kid, like me.
In a way I envy you Dennis. No lingering around with chemo treatment after chemo treatment with shit for quality of life. I think Sarah might just agree with me and in a way she might envy you too.
I love begonias. Carolyn grew these in a hanging pot just outside the back door. I saw the every time I walked to the back yard, a half dozen times a day. These flowers are deadly difficult to render realistically. I need a lot more practice to do them well. I’m learning, though. In ‘nature’ there are no lines but drawing this flower requires that I draw lines. The trick is to make the lines disappear into the contours of the subject. It’s not possible with ink, at least it’s not easy. Besides I love the effect ink gives a piece and if I want to look at a begonia not translated via the synapses of my brain I just look at the photo. The begonia I draw tells me as much about my synapses and my brain as it does about the subject matter.
The begonias below, one behind the other are stunning in my mind.
I draw them using a .3 copic pen and then use watercolour on them. This time I use a wet watercolour technique. I haven’t finished this piece yet as you can see. The next one I do will be done with no ink, just watercolour directly on paper with no preparatory drawing. We’ll see how that goes.
And now just look at all the other beautiful flowers that are still blooming in the garden in early October!
If you feel so moved you might just want to ‘like’ my post!
This is a re-blogged post: I first published this post in January of 2018. It has become one of the most popular posts of the hundreds I’ve posted since I started in 2012-13, viewed almost 500 times in 2020 alone. Somehow I find it’s relevant to my last post. Just after my mother died on January 13th, 2018 I posted a comment and a few days later I posted this one. Originally it was just called It turns out we die from the feet up. If you read this post in 2018 you might want to skip reading it now. I think it’s worth reading again.
[Disclaimer: Don’t read this post if you are sensitive around the topic of death and dying up close.]
It turns out we die from the feet up. Well, that’s not strictly true in every circumstance, some people die from a bullet to the head, but it has an element of truth to it. As I noted in a previous post, my amazing mom died last week, on the 13th, very near midnight. She would have been 94 on April 4th. I wrote before that she died a good death, but that’s not what this blog post is about.
For three days or so before mom died, we held a vigil by her side. I have many siblings but two of my sisters were especially attentive towards our mom and visited her virtually every day at her care facility in Coquitlam. They were especially present during this vigil, but most of my other siblings showed up at one time or another as did some of their children and even grandchildren. We spent many hours in mom’s room and out in the hallway. Some of my sisters (and a brother-in-law or two) spent nights by my mother’s side too.
My mother was 93 when she died. Her story is really astounding and is one of sacrifice, caring, selflessness and dedication. She married my father on January 28th, 1946. He had 5 daughters from his first marriage. His wife died in childbirth as she was giving birth to her first son. Because my father had to work to support the family I assume he put out the call for help and my mother, 21 at the time, answered that call. She moved into dad’s house to look after the 5 children and to do all the housework too. Long story short, my mom soon after married my father and they proceeded to have 10 more children, I being the oldest. I’m 71. I was born in 1947, a year after my parents were married. My eldest sister from dad’s first marriage is about to turn 83.
Well, it turns out that although we are a loving and caring family we are also prone to irreverence. We love to laugh and tease each other but we also care about and respect each other, despite our differences. As my mother lay dying, we got to wondering just how the staff knew that she was in fact near death. We asked questions and the nurses and care aides responded in very matter of fact ways. How can we tell when someone is near death? I had heard that when the kidneys shut down that’s a sure sign that the end is near but in this case, mom had not had food or liquids for 2 or 3 days. It would be difficult to tell if and when her kidneys shut down. All this time, mom’s pulse appeared to be quite strong and although her breathing was irregular, it seemed to be consistent.
One of the nurses then told us that it’s possible to roughly assess how long it will be before someone takes their final breath by looking at their legs. When the toes and feet get cold and a line of blotchy skin appears, that means that it won’t be long. Now, nurses and care aides have a lot of experience with having people die on their watch. It would be foolish to ignore what they have to say.
After that, we proceeded to periodically lift the blankets off of mom’s feet to see how her toes and feet were doing. We didn’t notice any special coldness at first. Even on the day of the 13th, it didn’t look as if her feet had changed much in colour or temperature. We often checked on mom’s feet to see if they were getting colder or if the line of blotchy skin was going up her leg. The nurse said that when the line gets to the knee, that’s it. Death slowly creeps up our legs. Of course, there was no question of mom coming out of this crisis alive, so it was just a waiting game now.
I left the care facility around 4:30 PM on the 13th so I could have dinner with my daughter and her family in Vancouver. We half expected mom to still be alive in the morning when we returned to the care facility. I was getting exhausted too and needed a good night’s sleep. As it turned out, that day was the last one I would see my mother alive. In the early morning minutes of the 14th I got calls from one of my sisters and a brother-in-law telling me that mom had passed away, but my phone was on vibrate and I missed their calls. At breakfast, I learned that my mother had passed away a few hours earlier. Within two hours of her death, the people from the funeral home came around and took her body away. Shortly after that, some of my family members cleaned out her room of all of her personal belongings leaving no trace of her ever having been there.
I called my sister and we talked about what happened as mom got closer and closer to taking her last breath. It so happens that the nurse was correct. Mom’s legs had indeed gotten cold and blotchy as her heart became too weak to pump blood to her extremities. By the time she died, her legs were cold up to her knees and her legs were blotchy.
So, along with the grief and sadness that we all felt as we watched our mother/grandmother/great grandmother/mother-in-law die, we learned about how the process evolves.
Right up to her last moments our wonderful caring mother had something to teach us.
Not much motivated to write about my myeloma journey right now. My last post was on August 23rd. Today is Monday, September 14th. For some time I tried and succeeded in putting out a blog post almost every week but lately with the uncertainty around my treatment, I’ve lost interest. So, it’s been three weeks since my last post.
I talk to my local oncologist in a couple of days for fifteen minutes or so but he doesn’t make the major decisions around my treatment. I have a meeting scheduled for the consulting oncologist next month, but I have no expectations around that consultation. It will be the first time I talk to this guy. He’s new in town. I’ll be just another file to him.
From my last set of blood tests I know that my blood is pretty much normal. That will change. Technically, if I’m considered in remission they’ll do more blood tests every three months and reconsider my situation then. But right now, I don’t know if I’m in remission or not.
I already told you that I decided to cut my chemotherapy short about six weeks ago now because one of my chemo drugs was playing havoc with the way my muscles are supposed to respond to the neurological signals controlling them. My thigh muscles are particularly affected by bortezomib (trade name: Velcade), the offending drug, to the point where I experienced severe pain and weakness in my legs, especially in my thighs. That situation seems to be improving slowly. I’m taking some good pain meds and they are helping the situation, and I’m seeing a physiotherapist, but I think just being off chemo is making a big difference.
It’s been a roller coaster ride over the last few months. I’m tired of it. Thankfully, being off chemo is giving me some respite although I still have great fatigue and restricted mobility. I am doing better and I’m happy about that. Lately I’ve been able to draw and paint a little and use my microscope, telescope, and iPhone to put together some interested projects. I can’t do anything for more than a couple of hours at a time, but that’s infinitely better than staring at the ceiling all day long. I’m actually enjoying myself. I have a secret dream, however, that I shared with my physiotherapist. I shouldn’t tell you because if it doesn’t happen I’ll be sadly disappointed, but I’m determined to get into (and out of) our canoe next month and paddle around for an hour or so without assistance and without dropping like a heap on the ground unable to get up. That would be cool. I also want to drag the trailer to Strathcona Park next month for a couple of days of camping. My real secret though is that I want to restore our canoe. I can’t face that task right now, but maybe later this year, who knows. Over the past while I’ve accumulated most of the materials and tools needed for the job. Now I just need energy and strength in my legs.
In any case, while I wait to see what will become of me and how much time I have to live, I’ve been able to occupy my time productively within the limits of my illness. Well, it wouldn’t do to just idle away my time now, would it and just passively wait to die? No! In our world idleness is the work of the devil! Can’t have that.
Wait, I can see it now. I’m on my death bed, hours if not minutes from expiring permanently, but I think that I’ve left something unfinished. No! Can’t do that. Must…live…long…enough…to finish…this…blog…post. And I do. And I die happy.
Of course worrying about a bucket list or unfinished projects or missed communications is all moot. After we’re dead, there is nothing. Concepts like regret are irrelevant. Even if one believes in an afterlife, I can’t imagine anyone thinking that afterlife would be taken up with regrets about things left undone or unaccomplished in life. What a drag that would be.
One thing that’s given me a lot of pleasure lately, as I note above, is exploring the microscopic world with my microscopes and iPhone. And I’ve discovered that I can use my iPhone to record an image on my spotting scope. I’ve posted those images on Facebook so I won’t post them again here. However I will post here a couple of videos I did of sword fern sporangia. I posted a video here of an exploding sporangia some time ago while it was still attached to the leaf. This time I scraped the sporangia off of the fern leaf and that provoked them to open up en masse. The videos are at two levels of magnification. There’s a close-up one and one at a lower level of magnification.
The spores are quite visible after the sporangia have evicted them. They’re the little beige dots littering the area not covered by sporangia. I want a microscope powerful enough to have a closer look at spores, but what is interesting to me even at this level of magnification is that we normally associate movement with animal life and here we have a plant that is moving…with purpose.
I love that as I look at the world through a microscope it’s obvious that all living things on this planet have a lot in common. Carolyn and I watched a YouTube video (NOVA) the other night on DNA called What Darwin Didn’t Know. It really reinforced the fact that DNA is ubiquitous and that life is much more unitary that we think. We really are all in this together. It would be awesome if we could develop respect for all life, all of us that is, including Monsanto and Bayer executives, oil company boards, politicians and all of us. Of course, respect for life also means respect for death, because they are not separable. Life depends on death. We don’t respect death now. We fear it. What would respect for death look like?
PS: I hope the videos work for you. If not, please let me know. For those of you receiving email notifications of my blog posts, you may need to go to the blog site to see them rather that stay on your email to view them.
PS2: My next blog post will be completely different from what you’re accustomed to read here. It’s about a brother I would have had if he had survived childbirth.
A couple of issues have been dogging me lately and are crying to be released into the blogosphere. One is the fact that I am no longer on chemo and what that means, particularly with regard to my future treatments and my relationship with ‘my’ medical team. The other is a nagging, recurring introspection around my death and dying. Let me start with my limbo between chemo and remission.
So, I’m not on chemo, at least not for now. Since October of last year I’ve been carefully supervised by a local GP oncologist and the Cancer Care Centre at the North Island Hospital in the Comox Valley. What happens now that I’m not on a regular regime of chemotherapy? I really don’t know, yet.
I called the Cancer Care Centre last week and they told me to contact my oncologist at the BC Cancer Agency (BCCA) in Victoria. Well, I contacted the BCCA to find out that the oncologist I thought I had is no longer employed at the BCCA and hasn’t been for two months or so. (Gee, thanks for letting me know.) It turns out I’ve been assigned a ‘new’ oncologist, one who has recently come here from Alberta. I have not met him but I’m scheduled to go to Victoria for an appointment with him in late October. His assistant told me to contact my local GP oncologist in the meantime. I get the sense that I’m getting a bit of a run around. I don’t think anyone is out to deliberately mess with me, but I’m feeling a little apprehensive about what happens now. It looks like I’ll have to be the squeaky wheel to get any answers. Let the squeaking begin.
I’ve noted this before, but one thing I am very grateful for is a great palliative care team. I can now report that my pain levels are going down steadily. That said, the weakness in my legs has not abated and that’s my main worry. That means that the neurological damage is not being affected by the meds I’m taking for pain. The pain is attenuating but the weakness is not. I’m still walking with two canes. I DO expect my strength to improve. Patience is the name of the game right now but I’m not that good at being patient.
Yes, I am a bit wistful, longing for a more settled, less precarious, state of life. Of course, life is never settled but that doesn’t mean I can’t wish for it. Life means movement and change but we are not alway happy with that state of affairs. We resist change by getting into routines and habits. We can delude ourselves into believing that life is stable when we do the same things day after day, week after week. The fact is, life is only finally settled when it reaches its destination.
In France in 2007, Carolyn and I boarded a fast train (TGV) from Paris to Montpellier in the south not far from the Spanish border. Arianne and Tim were living in Montpellier at the time doing post-graduate work at the university there. The train was incredibly fast (TGV is Très Grande Vitesse), moving at an average speed of over 300 kilometres per hour. Yet it was the smoothest train ride I had ever experienced (and I had experienced many in my youth). There was no clickety-clack, that most familiar sound I had heard on every train trip I had ever taken in Canada between New Westminster and Edmonton (where I attended boarding school). Lengths of track in France are welded together making for a single track running for hundreds of kilometres. No seams, no clickety-clack. Frankly, I found it a bit surreal but amazing at the same time. I had filmed part of the trip just as I had filmed other events on our six week visit to France that year, but I had a hard drive crash later and all my recordings from our 2007 trip were lost. What I have not lost, however, are my memories of that trip and our whole time in France that year. I still have vivid memories of catching the train in Paris, almost missing it, boarding without the requisite documents, settling down in first class (we decided to treat ourselves), and relishing this unique experience.
In bed a few nights ago after turning off the light by my bed my mind wandered again as it often has in the last few months to my death and dying. I had been looking for a metaphor I could use to make sense of my death, to give me some relief from the constant reminders of my demise. The reality is that I’m on borrowed time with the inevitable outcome of my death looming. My brain wants to keep coming back to that. It’s determined that I will be relentlessly reminded of my death and it will make sure that that reminder holds pride of place in my frontal cortex, not content with having it stay in the back of my mind where denial is so easy. We live by metaphors so I figured it should not be too difficult to come up with a good one. But I’m not sure a metaphor can win a contest with my brain when it comes to the ominous death watch I’m experiencing.
Then, our French TGV trip came to mind. The more I considered it, the more it made sense to me as a metaphor for life. That conviction was further reinforced as I read the article I link to below on our fear of death. The message in that article is simple: life is finite so make the best of it.
Using a somewhat questionable syllogism in this article Dresser asks us to consider whether or not we are afraid of the time before we were born, when we didn’t exist. If we aren’t afraid of that time, then why should we be afraid of death which is simply a time of non-existence much like our time pre-birth?
Yes, I suppose so, but it’s not that simple. Before being born, in that time of nothingness, there is no accumulation of life’s memories, of hugs, orgasms, loves, hates, good meals, accomplishments, and regrets. There is no possibility of loss or even the conception of loss. The anticipation of death, by contrast, involves facing the loss of everything, including experiences and all things material and immaterial.
Of course there is no perfect metaphor, but thinking of our TGV trip as a metaphor for life (actually any trip will do), it’s obvious that before boarding the train there was anticipation but no knowledge of the imminent experience. Once on board, there is full knowledge that eventually the trip will come to an end but the passing scenery, the food, the weird passengers on the other side of the aisle, all consume our attention. Eventually, of course, time is up, the train pulls into the station and we are compelled to disembark. We may not want to leave the train, having enjoyed the trip so much, but that’s not an option. We must leave the train and its memories behind. Yes, coming into the station and dying are comparable I suppose. Both are inevitable, both are necessary.
Yeah, maybe that works, but I have to think about it some more.
You might have seen tansies at one time or another. They aren’t super common but can often be found on vacant lots. In fact, the tansies in images 1 through 3 were photographed in an otherwise empty lot in our neighbourhood (by Carolyn). I sequenced the photos below to go from a wide to a tight view. The 4th image is one I took with the WiFi microscope at full magnification. Every one of the tansy flower heads is made up of over a hundred of the compacted cone/shafts you see in the 4th image. So, in image 1 you look over a minor sea of flowers. In image 4 you get close and personal.
What you don’t see in any of these images is what you see in the video that completes this gallery of images, namely the army of insects that populate tansy flower heads. You may be seeing only flowers when you look at images 1 through 3, but you’re also looking at bugs, lots of bugs, bugs invisible to the naked eye. The number of microscopic bugs out there is staggering. I won’t speculate on how many of them you had for dinner or are living in your eyebrows. That may be something you’d rather not be reminded of. Sorry.
I find it fascinating that we miss so much when we see the world with our limited eyesight. Truth is we see a narrow slice of the world, and that, unfortunately I think, also limits our appreciation of vast unseen, yet important to us, aspects of the world.
Thursday, August 13th is the second Thursday since early October, 2019 that I have not taken Bertezomib or cyclophosphamide, the two main chemo meds that I’ve been taking for months. I’m still on a low dose of dexamethasone and now nortriptyline, along with low doses of hydromorphone. My palliative care team is now fully involved in my case because of the Bortezomib induced neuropathy I am experiencing. Oncologists know very little about pain and make no bones about it, as I’ve noted before, nor do most GPs, so it’s up to the palliative care doctors to do what they can to relieve pain. GPs are often left to deal with the pain their patients experience but it’s often a guessing game finding the right palliative. It’s best left to the experts.
As it turns out, hydromorphone may not be the best opiate for me. In fact, it may be exacerbating my pain issues. So, back to the drawing board. We’ll be modifying my pain med regime one step at a time to ascertain the impact of whatever it is we do without crowding the issue by changing more than one med at a time. I can tell you one thing: I’m sick and tired of being in mind-numbing pain all the time.
Frankly, I’m feeling somewhat adrift. I was so used to the chemo regime and now that it’s gone, I’m struggling with what to make of it. So many unknowns as I slide into a time without chemo but with no promise of remission or relapse. I’m sure I’m not alone in this living purgatory, somewhere between chemo and remission. My GP oncologist told me that he would be in touch in six weeks or so to see how I’m doing and, I suppose, to set up a schedule for follow-up blood work. I should be getting blood tests every three months or so to ascertain the state of the myeloma proteins in my blood. Once the proteins start increasing, it’s time to make a decision again about chemo. Sheesh.
Whatever, the bottom line (to use a business metaphor) is that I’m getting ever closer, as we all are, to the moment of my final breath. The closer I get the harder it is to deny it. The difference between you and me might be that I’ve been issued my ticket to ride, stamped and ready to go in the form of multiple myeloma.
No, I’m not immune to the lure of death denial. I’m not anxious to die. I don’t have a death wish. In fact, I have a life wish. But wishing and hoping aren’t going to get me past this one. It’s just so hard to fathom being dead although I can see that it would be a relief from American politics.
Lots of people urge me to be positive and/or stay strong. Well, I’m not curled up in a fetal position in a corner of the living room wailing and gnashing my teeth waiting to die. Still, it’s a bit daunting thinking that, like my parents, grandparents, and all ancestors, I will also be relegated to the dustbin of history, and in the not-too-distant future.
Yes, I stay positive. I’m registered for a webinar organized by the Multiple Myeloma Foundation set for this Saturday at 1 PM. I wouldn’t be doing that if I weren’t positive! The webinar is to inform us about the latest treatments for myeloma and the progress that’s being made to find a cure. Yes, some researchers and scientists are actively looking for a cure. Problem is they’ll never find a cure for death.
Yes, I stay strong, whatever that means. Sometimes I just want to scream about the injustice of it all, but I don’t. I stay calm, but I seethe inside quietly with my teeth clenched. Maybe that isn’t staying strong. I don’t know. One thing for sure is that when worse comes to worse, I won’t hesitate to get zonked on morphine. Suffering is highly overrated. I’m not sure what the virtue is in suffering. You tell me. Is there a reward?
Okay, so now for something completely different. Some of you will know that a couple of weeks ago I got a microscope that I can use in conjunction with my iPhone. I get some great pictures and video with it. I also have a standard lab microscope that is actually more powerful than my Wi-Fi microscope, but it’s not easy getting pictures with it. The pictures below were all taken with the Wi-Fi microscope and my iPhone. The first three images are pretty straightforward. The others not so much. The first image (1) is of a dragonfly wing. The second is a photo of the eye of a tiny fly. Number 3 is a larger image of 2. Image 3 is of the spore sack of a fern. The 5th is much different.
Don’t get grossed out now, but the 5th image is a very enlarged view of a mole on my back! I know…eweeeew. Weird, eh? You might want to keep microscopes away from your body after seeing this. Number 6 looks very flesh like, but it’s a highly enlarged view of a plant part. I can’t remember which plant or which part. Number 7 is…I have no idea. I don’t recall taking this image, but it’s of some plant part. Reminds me that I have to more carefully document these things, not that I’m doing a systematic study of anything. It’s just interesting to do while I wait for my myeloma to return.
I’m finding some great inspiration for abstract paintings here.
So, the last three weeks since my last post have been momentous (for me) because, as I’ve noted before, I was faced with the devil’s choice of carrying on with the chemotherapy that was sapping my mobility, or of putting my chemo into abeyance. It’s been very stressful for me and for my family, especially for Carolyn.
Before I get into my decision and the reasons for it, I just want to say that I’ve had really incredible support from the oncology staff at the hospital, as well as from the palliative care staff, especially Dr. Marie-Clare Hopwood and Adele, one of the nurses at the Centre. Pain is a huge issue and a major hindrance for healing. The challenge for palliative care staff is to manage pain in the face of severe illness.
That’s where I come in. I provide the pain, they provide the relief. Ideally, at least.
Well, I’m pleased to say that in some ways, with certain aspects of my pain, I’m getting some relief with the helpful prescription writing skills that Dr. Hopwood brings to the table. It turns out (and I’ve probably already told you this) that opiates, including hydromorphone, are not much good at attenuating neuropathic pain, that is pain that originates in the nervous system. Most of my pain over the past couple of months has been dominated by neuropathic pain in my back and legs. It turns out the neural systems in my back and legs aren’t doing a great job of controlling the large muscles of my lower body. Fact is, the muscles in my legs dance constantly with fasciculations.* You may experience the odd fasciculation, but my legs are alive with them to the point where my legs have less than ideal control coming from the nerves that are supposed to make them move without us thinking about it, I lose my balance constantly, and use two canes to walk.
How often do you get a house call from a doctor?
Well, Dr. Hopwood and Adele came over to the house a few days ago for a consultation. We all sat on the deck at a proper distance apart and Adele and Dr. Hopwood wore face masks. We talked for quite some time before Dr. Hopwood arrived at a strategy to help with the pain in my back and legs. I won’t get into details, but it doesn’t involve more opiates. I’ve been on the regime that Dr. Hopwood recommended for almost a week now and it’s going well so far. I have other pain issues, but they have to be resolved in other ways. More on that later.
This past Wednesday during a regular consultation with my GP oncologist, Dr. Bakshi, I put it to him that I felt my mobility was being severely compromised and that my quality of life was being significantly eroded, especially in the last two months or so. For instance, over the past couple of months my legs have given way on me four times and I’ve found myself on the ground with no ability to get up. Thankfully, there was always somebody with me to help me get back up.
I told him I was seriously considering abandoning my current course of chemo. I was gratified to find that he was in complete sympathy with me. He said that I had successfully completed more than 80% of my suggested nine cycles of chemotherapy which would have taken me to October 6th. So, I made the decision to put my chemo into abeyance. What does that mean?
Well, it means that I’m off chemo for the foreseeable future. My last blood work shows that my blood is normal with very little paraprotein, good liver and kidney function. Now we just have to wait to see when the myeloma will again haunt my bones, veins, and arteries, because it surely will. It’s just a matter of time. Of course, I still have intense neurological pain and severe weakness in my legs. That won’t go away any time soon, if ever. We just have to wait and see.
*A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as much as 70% of people experiencing them. They can be benign, or associated with more serious conditions. When no cause or pathology is identified, they are diagnosed as benign fasciculation syndrome. (Wikipedia)
Now for some wee bugs. I bought a 1000 power microscope on the internet that is pretty cheap but operates in conjunction with an app on my iPhone. It takes photos and videos. I find it fascinating that this little microscope can ‘see’ things I can’t see at all with my naked eye. I may use some of these photos as a basis for art work.
I caught these little guys at very high magnification on the backside of wisteria leaves. I have no idea what they are called. Any idea? I think they’re mites, but ???
So, I’m sitting on the deck overlooking the fountain that Tilly has fallen in love with, and I can see the bees working the St-John’s Wort, flower after flower. I tried to capture of video of bees and flowers, but so far it just hasn’t worked. In any case, I swear I’m telling the truth (bees swarm those flowers!) so don’t press me for visual proof although I have posted a picture of the St-John’s Wort above the fountain. Spot the bee!
Hummingbirds are into the honeysuckle to the right of this picture, making regular trips here from the feeder in the front of the house. We have huge huckleberry bushes close by which we usually save for the robins and for my brother Léo when he often comes to visit with his family in the summer. But this year who knows where the robins are and Léo is safely distancing in Maple Ridge. Someone will probably write a book: Romance in the Time of Covid or maybe, Covid-19: Mess up our world will you?
The weather is getting warmer and the reclining chairs we have on the deck are very comfy. Sleep comes easily unless I’m on one of my dex days. Two and a half more chemo cycles. Must make it through. I’m trusting that I won’t be in a wheelchair after my first chemo course is over in October, but who knows, oncologists are not known for committing themselves to a particular prognostication. Oh well. Such is life.
Winding down. Sometimes I lay awake at night, especially on those nights when I’m on a dexamethasone high. Wakeful periods at night are a new things for me. I never had trouble sleeping, not even during really stressful periods in our lives. Now, at least three nights a week I have a hard time falling asleep or staying asleep.
At these times, all kinds of thoughts come into my head. They’re not all bad thoughts. I sometimes go over plans I have for a project I’m working on or I’ll muse on the news of the day. Sometimes wakeful periods can be quite productive. I promised myself years ago that when I got old I wouldn’t be one of those people who lived in the past reliving regretful events or sad moments in my life. Oh, that happens on occasion, but then I catch myself doing it and move on. Inevitably, these days, my mind wanders into the wall of truth that is my seventy-three years of life. Seventy-three years can seem like a long time, but it’s just a flash, really.
As Brian Cox, the famous British physicist put it, the universe itself lives and dies in a moment. Individual organisms come and go in an instant. The passage of time is an illusion that allows us to cope with the need to die. One human life lived over a period of eighty years is no more fleeting than the life of the universe itself.
Cox could have said “One human life lived over a period of eighty years is just as fleeting as the life of the universe itself,” because it is SO fleeting. Lately I’ve been musing about the lives of my parents and of their parents. My parents lived fairly long lives by most standards, both into their nineties, but they’re both gone and now their lives are a complete thing. It’s possible to trace their lives from beginning to end, to focus on the things they did, the children they had, the jobs they had and the way they related to us kids and their friends and relatives. There are photos and some film that my father took with his Super 8 movie camera. Everything they were and did is packaged up and we call that their lives. The finitude of a past life is obvious. It has a beginning and an end.
In our own lives we look back on past events, camping trips, weddings, stressful situations at work, strained relationships, special bonds we create with like minded people and with community. We look forward to and anticipate events, meetings, occasions, going to bed or working on a project. Time never stops for us until we fill that space we call life. At the time of our death, our life space is complete. A life is not complete until death, no matter when death comes.
Yet we are like mushrooms.
We are products of a cultural, social, and physical mycelium that has existence over time. We are much like mushrooms that sprout from a mycelium that has existed underground for some time and will exist long after the mushrooms that it produced slowly melt away back into the soil. Like mushrooms, humans flower for a short time, then decay returning to the soil of our ancestors. We are expressions of a process. Yet, no matter how elegant and truthful this metaphorical explanation may be for our lives, it does not satisfy.
No matter how hard I try to intellectualize the problem of time, life and death, I can’t help but get choked up a bit when I think that I’m on my last legs, that my death is immanent. It’s still a bit of a shock to me to think that I have incurable cancer. No way of getting out of this one. One day soon(ish) I will die. Am I prepared for that day? Not really. I want to think that when the time comes I will courageously and stoically meet my fate, but I may just beg for more morphine. Who know? However I spend my last moments of consciousness, nothing will change the outcome.
Yes, there’s currently a lot of research being done on a cure for multiple myeloma but like AIDS, it’s cure is elusive. There are treatments for myeloma that make it more like a chronic disease than an immediately fatal one, but still, the writing is on the wall, as the saying goes. Besides, myeloma or not, my death is inevitable, as is yours because that is the way it is. Life and death dance together. Learning the final dance may be the toughest thing I ever do.
A minute ago I mindlessly killed a mosquito. It’s an automatic reaction. A Jain would be very displeased with me. Janism is an ancient Indian religion. “Jains believe that animals, plants, humans (irrespective of different spiritual development) all have a living soul in them and all should be treated with equal respect and love.” (From the website)
Shit. Well, I guess I’m no Jain.
How mindlessly we treat most life, and how quickly life comes and goes.
Carolyn has her hands full these days, does she ever. I’m experiencing some particularly nasty side effects of one of my chemo meds weakening my legs to the point of near collapse, and last week we found Princess, our cat, in severe distress requiring long stays at the vets and heroic efforts to save her life. On top of that, there’s the puppy we brought into our lives. She’s a wonderful addition to the family, but she’s a rambunctious puppy, demanding of attention and needing some training to stop her from biting us incessantly, ripping our clothes and our bodies. Then there’s the garden.
Speaking of the garden. It’s unbelievable this year. We’ve been eating lettuce from the garden for weeks but now the peas are coming on strong and the broccoli, cauliflower, and kohlrabi are in the pot. Some of the raspberries are ready to pick, the tomatoes are coming on as well as the zucchini and cucumbers. We’ve never had much luck with root vegetables, but this year it looks like the potatoes, carrots and beets will produce lots of tasty treats. The garlic is a bit behind this year but should be ready to pick in a week or so.
The cedar trees are loaded with cones this year to the point where they’re dragging the branches down. My favourite flowers, the lilies, are opening everywhere on the garden and this year we have a rare pond iris bloom. Such a delightful show! The birds are active too and the squirrels are busy picking the not-yet-ripe cherries. Looking out the living room window right now I’m seeing an American goldfinch, a purple finch, a couple of woodpeckers going after the suet attached to the feeder and a congeries of species, mostly thrushes, towhees, chickadees, and finches. At the pond is where we more often see kinglets and warblers. Of course, hummingbirds dash about in their usual frenzy all over the garden. So much to eat these days for all the birds.
It’s been tough lately. I’m in quite a bit of neuropathic pain from one of my chemo drugs, something I’ve already written about a couple of posts back. My legs want to give out on me and if I should ever get down on the ground, I can’t get back up on my own. It’s downright discouraging. One of the main problems with this is finding the right pain med to deal with it. Hydromorphone is ineffective against neuropathic pain although I’m always tempted to take it so that I get stoned enough to be able to sleep. But I don’t like that strategy so I’m looking to other ways of getting by. I’m cutting back on my hydromorphone and taking more acetaminophen. That seems to allow me to sleep better while avoiding some of the worse brain fog and intense fatigue that I get from the opiates.
It may be that some of the back and leg pain I’m feeling is from conditions other than those produced by myeloma or chemo. To see if there’s a mechanical issue, my local oncology GP has ordered an MRI to check things out. He also suggested I think about taking Gabapentin or Lyrica, but I’m not having anything to do with those drugs. They may help in some ways, but they can create lots of problems I don’t need. I’m talking to the palliative care people too and they may have suggestions. In the meantime we wait and hope the pain attenuates. I’m operating at a very reduced capacity at the moment. Must carry on, though. No point in quitting now.
Thank goodness I have Carolyn and the garden for solace.
Princess Pretty Paws
Princess is at least ten years old and has been very healthy since we got her two or three years ago. Last week we got the puppy and Princess disappeared. At first I thought there might be a connection, but Princess is not the kind of cat to run away. In any case, Carolyn found her upstairs a few days ago. She was obviously in distress. We think that she may have been hiding out in the crawlspace as she got sicker and sicker. So Carolyn immediately took her to the vet. Princess stayed there a few hours for observation and tests. The vet was at a loss to figure out what was wrong with her. The one real anomaly in her blood was a high bilirubin count indicating a liver problem. We thought it might be poisoning, but that wasn’t the case.
It turns out she has a serious problem with a bowel infection or something along those lines and she has inflamed organs. So what to do? Well, some people might have decided to put her down but that’s not our style. More tests and more again. She saw the vet three days last week as well as today, on Sunday. We have a great vet!
Princess has been on a feeding tube for three days now and we seem to have that under control. She’s on lots of meds that we give her at feeding time. Her fever has dropped, she’s eating (through the tube) and she’s getting more active. She’s not throwing up and she’s using the litter box. All good signs. So we carry on and see how it goes. We keep our fingers crossed. No point in giving up on her now!
Tilly is a Bernese Mountain Dog, Shepherd and Maremma Italian sheep dog cross. She’s nine weeks old and is a gift from our amazing daughters and their families. She has a great personality but like most puppies of that age is teething and biting is something she does indiscriminately. She plays rough. She bites whatever comes along: cardboard boxes, chewy toys, table legs, blankets, and us, of course. Carolyn’s arms are scratched up quite badly as you might expect. Mine are less so. We’ve found some puppy social classes for her and with some training she’ll be just fine. She’ll grow into a wonderful, mellow girl. For the moment though, she is a handful. There’s no turning our backs on her for a second. She’s very fond of the fountain next to the deck and lays on the rock taking a nip at the fountain from time to time. She’s figured out how to get under the deck and she goes from one end of it to the other under there. She figures that’s a real hoot. She loves her treats and is now responding readily to the sit command but she might just ignore that if she she wants to play, meaning attack and bite us. To be fair, she can be gentle too and plays by herself quite well. She’s not always bitey.
We’ll have to be very vigilant when Princess starts wandering around the house and property. We don’t want Tilly chasing her. It will be a challenge.
So there’s sorrow in the household at the moment but there’s a lot of joy and hope too. Be careful out there in the Time of Covid-19!