Remission!

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.

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AND, haha…there’s a snowfall warning for tonight and Friday morning at higher elevations (which could mean Cumberland). ❄️🌨❄️❄️❄️⛄️ Sleep tight!

# 66. Pain for Gain, Fall Colours in the Garden, and Under the Microscope.

Pain For Gain

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.

#65. Musings, Flowers, and In Memoriam.

Musings

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.’

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In Memoriam. Thinking of you.

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.

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Flowers.

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.

This is quite impressionistic. Definitely not ‘realistic.’

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!