#75. A Triple Whammy of Crap (and maybe a bit of good stuff too).

It’s been tough keeping my shit together over the past few weeks. I’m having trouble just sitting here composing this on my computer. Part of my problem is physical and part is a growing psychological ennui. I’m exhausted most of the time. Oh, I can get up and walk around a bit but sometimes that’s even too much.

Obviously myeloma has a lot to do with my unease even though I’m in remission, or I think I’m still in remission. I have a chat with my oncologist on the 22nd to confirm my status. It’s hard to know what to think anymore. My usual myeloma symptoms, peripheral neuropathy, itchiness, fatigue and weakness in my legs, are still evident, but now, I have something new to report to him.

I saw a dental specialist on December 21st. After I came to see him because of pain in my jaw, my regular dentist suggested I would probably need to have a tooth pulled and a cyst at the base of it cleaned out. Well, it turns out that the specialist I saw in Parksville figures that the pain and numbness in my jaw is not dentally related. It’s more likely myeloma induced and that the ‘cyst’ is more likely a lytic lesion. I’m still waiting for a call from him letting me know what the situation is. He has a connection with the BC Cancer Agency in Victoria so I expect he has better access than most of us to oncologists. I expect he’ll suggest radiation treatment, something we discussed on our December 21 consult, but my oncologist will decide on therapies.

Right now, I’m on a rollercoaster of symptoms and I can’t predict one day to the next how I’ll be or how much extra hydromorphone I’ll need to take to deal with the pain. My jaw is sucking up the hydromorphone, that’s for sure, but so is my back and a recurring, baffling pain in my left heel that forced me into a wheelchair at one point late last year. I can’t tell you how sick and tired I am of the pain. It leaves me physically and psychologically drained. Thank goodness I usually sleep quite well and Carolyn is envious of my ability to nap at a moment’s notice.

The title of this post is A Triple Whammy of Crap. Well, I’ve written about the pain and distress brought on by myeloma and its treatments. Myeloma and its related poop is the first part of my triple whammy. Now it’s time to move on to the other two elements of the triple whammy. First, a definition:

Triple Whammy

An online dictionary of idioms describes a triple whammy as “a combination of three different elements, circumstances, or actions that results in a particularly powerful force, outcome, or effect.”

I’ve already alluded to one element of my triple whammy, the myeloma and its treatments I deal with daily. The other two are the pandemic and American politics. So, myeloma, the pandemic (and associated restrictions) and American politics together contribute to generating in me a profound funk. With crap falling on us from all sides it’s hard to keep the smell of shit at bay.

The Pandemic

These days, we all have some sense of what it was like to live in 1918. The Spanish Flu was a powerful killer and didn’t discriminate except that wealthy people were better able to protect themselves from crowds than the poor could. That’s still the truth in 2021. The coronavirus COV-2 is adept at making many of us in the population very sick and puts a lot of pressure on the medical system as it forces hospitalizations.

One way the government and chief provincial medical officer in British Columbia have decided to combat COV-2 is by keeping us apart from each other so as to prevent the spread of the virus. Isolation is hardly ever good for a social species like us. There is a lot of evidence for what happens to people who are forced into isolation like solitary confinement in prison. They go wingy after a while. Children forced into isolation, say in an orphanage, die at much higher rate than children born and raised in poverty or in prison with their mothers.

So, in order to relieve the stress of isolation, people here find all kinds of ways of bending the rules, traveling to nearby destinations, or just getting on a plane to a warm destination because the government hasn’t outright banned travel, now has it? It just strongly recommends against it. Many politicians have decided to travel in any case, arguing that they haven’t broken any rules in doing so. Outraged commentators on social media have found all kinds of reasons to criticize them including their flouting of moral standards. Whatever.

I guess the bottom line here is that we are asked to wear masks and to keeping a physical distance from others whenever we step out of our homes. No hugs. For us that means no contact with our children and grandchildren. That sucks! We will follow the guidelines as we go along, but that doesn’t mean we’re happy about it.

American Politics

So, why would I include American politics as the last element in my triple whammy of crap? What the hell has American politics got to do with us? With me?

Well, apart from the fact that I have friends and relatives living in the United States and who have to live with the lies, the betrayals and the crap everyday, the profound disfunction of the American political system creates uncertainty for us, for all of us. The moral degeneracy in the US so easily spreads to the rest of us, especially those of us living close to the 49th parallel, and is impossible to avoid. The disrespect for democracy and the ready acceptance of oligarchy evident in the US could spread to us like a virus and infect our own fragile political systems.

Besides, the uncertainty is stressful as is the insanity. We get up in the morning not knowing what the hell Trump or his cronies in the Republican Divided Party are likely to conjure up and take up as a tool to wreck confidence in the American voting system or in any drive to greater social equality. I can tell you that I’ve had my critical judgments around the American voting system and the Electoral College in particular. That said, destroying the ship plank by plank as it sails off into the sunset may not be the best strategy for reform especially for everyone aboard.

Done.

Any one of the three elements of the triple whammy I outline above can cause inordinate stress (and does!) but the three of them together leaves a trail of discomfort and uncertainty multiplied threefold. We’ll carry on, but it’s not easy. Thankfully there are countervailing forces to help balance things out a bit.

A nap in the afternoon for one. An African violet blooming its little heart out in December and January for another.

I’ll be backing off writing here for a time. I’m not sure for how long. I’ve got to get a sense of balance back into my life (if I ever can). The truth is I’m 74 years old and sick with myeloma. Many days all I want to do is sleep.

Many people tell me that the power to heal is within me. I just need to harness it, to think positively, and to ignore negative influences in my life. At 74, that’s easier said than done. It’s usually younger, healthier people who urge me to get my power pack in motion. Of course, nobody messes with death, positive thinking or not.

61 Apprehensive,Wistful, and Tansy* bugs.

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.

Apprehensiveness

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.

Wistfulness

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.

How to not fear your death by Sam Dresser

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.

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Tansy!

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.

Tansy flower at full magnification with thrip (we think). Click twice on this image to activate it.

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*a plant of the daisy family with yellow flat-topped button-like flower heads and aromatic leaves, formerly used in cooking and medicine.