Meh…and sporangia.

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.

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.

I Really Should Know Better…and Wisteria.

Yes, I really should know better. This is the pattern: I sense a marked improvement in my wellbeing. I start to do things. Maybe I do too much. I injure myself. Now I can’t do much again! Damn!

The problem is that I have myeloma, alright and I’m taking chemo meds, alright, but that doesn’t mean I will be distressed exclusively by cancer related issues. At the moment I’m experiencing pretty severe IT band pain. That means my left side, hip and upper leg are quite painful to the point of preventing me from sleeping. Of course I can take extra hydromorphone to alleviate the pain, but that has its consequences. If I take enough to get to sleep it’s like I have a hangover the next day. That’s not terribly pleasant and I don’t like it.

It’s so tempting, though, to do things! And there are lots of things to do. For instance, even though I shouldn’t be kneeling or getting down on the ground because of the lesions in my femur, I did that anyway while working to fix the irrigation in the garden a few days ago, just one of those things needing to get done. Now my back is chastising me for doing that, and it’s especially gleeful in its chastisements at 3 AM. As I sit here writing this, I can feel the pain slowly increasing in my lower back. I had surgery on my lower back about a hundred years ago, but the scar tissue still causes me pain now and again. Over the years I developed coping strategies to deal with lower back pain, but every once in a while my enthusiasm to get something done interferes with the caution I should be exercising in doing anything physical. I can still do things, but I just have to be smart about it. Unfortunately, sometimes my smarts abandon me and my frontal lobe meekly succumbs to the bullying from my amygdala. Brain wars. This part of my brain says “Yes, do that!” Another part says, “You know better than that!” Which brain part wins is sometimes a toss-up, but more often than not, the do-that part of my brain wins and my lower back sooner or later exacts the price. These days, as I get older and older, the price is exacted sooner than later and lasts way longer than I find reasonable.

I’m just coming to the end of my fifth chemo cycle. Today is a chemo day, but I only take one of the three drugs I normally take earlier in the cycle. So, no dex and no bortezomib. That means no dex high to counteract the cyclophosphamide downer that always happens on chemo day. Bummer. I got to looking forward to my dex days. I got a lot done on my dex days!

Today, I could barely do anything. We went out to the hospital lab this morning to prepare for my visits with doctors next week, then I waited in the car almost falling asleep while Carolyn did some shopping, first at Art Knapps (AK), then at Thrifty’s. I was pretty dozy, but I couldn’t sleep because I kept getting distracted by the parking lot antics of people coming and going from the stores. People coming and going from Art Knapp’s were quite entertaining. Apparently there is a number of people of all ages who shop at AK who can’t read or have attention-deficit issues. The new signage telling people that the former entrance is now an exit-only door flummoxed quite a few shoppers who couldn’t figure out the new rules.

Starbucks at Thrifty’s is still busy it seems. A number of people had coffees in hand as they got back into their cars. I was surprised at how many people came out of the store with only a couple of items in hand. One woman pulled up beside our car in a black twelve cylinder biturbo Mercedes hard top convertible, went into Thrifty’s just to come out a few minutes later with potted flowers, that’s it, just as a classy guy who parked his van across from us (clearly marked with his business name all over it) spit on the pavement every couple of steps he took as he walked towards the store, muttering to himself between spits. So much for shopping only once a week or being super cautious in Covid Times. How could I sleep with all this entertainment going on?

When we got home it was nap time. I slept for two hours. I hope I can sleep tonight after that.

Now, you can feast your eyes on this amazing forty year old wisteria that has a trunk at the front of the deck then snakes around along a structure about 7 feet off the ground for probably 10 metres. It’s beautifully aromatic and frames the table and chairs on the deck.

What better way to finish a blog post. Soon I will post a video of Carolyn’s amazing gardens. There’s no other way to show it off right now, so I’ve polished up my rudimentary video skills and enlisted my basic Sony video camera to put together a 20 minute video. I’m not a great narrator so I’m working on setting it up without talking too much. It’s Carolyn’s birthday on Monday so this video is partly a birthday present for her. Still in love after 47 years. It helps that we’re both a little crazy.

The Unrelenting Presence.

Carolyn and I have just finished reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee. The author, an oncologist and Renaissance man, who won a Pulitzer Prize for non-fiction for this work in 2011, masterfully addresses the war on cancer over the past few centuries or so, but with a special focus on more recent events and ‘successes’ relating to specific cancers and new treatments. Cancer, as the books so often argue, is not one disease but lots of different diseases. They all have one thing in common, though: pathological mitosis.

I’m not going to review the book today. I will, though, sometime soon. I’m kind of bummed out right now and not really in the mood to write a long blog post. I took my chemo meds again today. That’s always a fun time, but I’m still confused about just what accounts for how I’m feeling. Sometimes we call these feelings ‘symptoms’ but I don’t like that word much. I’m not sure why. For instance, this afternoon I felt exhausted, and lightheaded, somewhat dizzy too so I went to bed for a nap. As I lay there my body was tingling all over. Is that a feeling or a symptom? If it’s a symptom, is it a symptom of my myeloma, the chemo meds or something else? It’s still tingly, but not as intensively as this afternoon.

I’m bummed, but I should be celebrating, I guess. I had a five minute telehealth conference with my Victoria-based oncologist yesterday morning that’s left me feeling a little empty. For one thing, although he called me by name when we made screen connection (It’s like Skype on steroids), he was not prepared in the slightest for the interview. He asked me how I was doing on a chemo cocktail he had withdrawn me from a few weeks ago. Then he asked me what he could do for me. Well, shit. He then got so focussed on the computer screen he was looking at with my charts all over it that I might as well have not been there. So, I asked him about my lab results. Yes, he said, everything is going very well. The drugs are working. Reason to celebrate, right? Yes, I suppose, but then he says that I had better get used to the shitty quality of life I have because that’s my future. Even if I go into remission. Well, slap me in the back of the head! It wasn’t that long ago that he sat before me and told me I’d regain some good quality of life in remission. Maybe he was having a bad day. Now I was having a bad day too. I felt that this guy needs a talking to about compassion. He rebuffed any attempt I made at personal conversation. He was cold and completely detached. Maybe he was having a bad day but maybe not. Maybe he’s like this most of the time. Then I thought, maybe my expectations are too high. Maybe I should think of him as a consultant, more than as a doctor treating me like my GP would. After all, I see him for five minutes every four months. So, whatever, I’m still bummed out. Distractions like writing, reading, and watching YouTube videos are good for me, but I can’t be distracted a hundred percent of the time. Any break, any crack in my distractions and the dark light of myeloma reminds me in no uncertain terms of my mortality.

Mukherjee is so informative. I learned a lot reading his book. I’m also reading a book on Medieval medicine and even a thousand years ago, ‘doctors’ recognized cancer for the killer that it is, but they looked for the causes in ‘black bile’ and other humours gone bad. Towards the end of his book Mukherjee gets real for me. It’s all fine and dandy to ‘know’ about cancer, to study it, to follow developments in its treatment, but now, cancer has me up close with its unrelenting presence. I leave you with two quotations from Mukherjee’s book. I am these quotations.

“The poet Jason Shinder wrote, “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But what patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

AND…

“Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

Read the book

Enough for now. Maybe I’ll have more gumption tomorrow.

I got to ride in an ambulance!

No sirens or anything, but still. We drove to Victoria (I should say Carolyn drove to Victoria) last Wednesday for an appointment with an oncologist at the Victoria Cancer Clinic. Wednesday went well enough although I’m in severe pain and the stress is overwhelming. Despite my distress we had dinner at the hotel. That was great. The Inn at Laurel Point is a superb hotel and the staff is excellent.

On Thursday morning we got a cab (Carolyn wasn’t particularly interested in driving, parking, etc) to the Cancer Clinic which is right next to the Royal Jubilee Hospital. We waited for a bit then had a good appointment with the oncologist which lasted probably an hour and a bit.

After our appointment we decided to head into town to have lunch and do a little shopping. Big Mistake! Multiple Myeloma is not a forgiving disease and doing regular daily activities can be impossible. I was to find that out in spades. Instead of doing the logical thing and taking a cab back to the hotel I decided a walk would be good. Wrong! A walk is the last thing I needed. I was in severe pain by the time we got to the hotel. I lay down on the bed to see if I could dissipate the pain a bit and that seemed to work until I thought about getting up. Impossible! The pain was over the top, way over the top. Eventually I got out of bed by sliding off the end of it while in a critical state of pain. Well, a normal person might just have decided at that point to call an ambulance and get to the emergency department of the Royal Jubilee. Not me. I’m tougher than that, and way more stupid. So I took a schwack of T3s and went to bed. Hardly slept at all. We were supposed to drive home in the morning but that wasn’t going to happen. We called the oncology nurse and after a bit of discussion she told us to get an ambulance back to the hospital to get an MRI and to deal with the pain. So we called an ambulance and the paramedics came to our hotel room and got me on a gurney, etc., put me in an ambulance and took me to the emergency department. I think that will be the last time I let anyone talk me into going to emergency. I don’t blame the staff, they have their protocols, but the truth is I wasn’t there for a diagnosis. Nonetheless they took some blood (why, who knows) and had me sit in a waiting room with 60 or 70 other people. while I was in severe pain. Well, we were there for several hours. I got no pain meds for hours but finally got a CT scan, when what I needed was an MRI.

In any case, by the time I was in that black hole of an emergency department my pain was at a critical point so the ER doctor got me a hydromorphone drip and a prescription for hydromorphone. We got back into the truck but now had to stay another night because Carolyn can’t really drive after dark. Thankfully the Laurel Point Inn was able to accommodate us. I slept that night fully in the hands of my opioid angel. The hotel has a wheelchair which is good because by now I’m unable to walk because of the pain. In the morning we go downstairs, have some breakfast and then head for home. I knew that by the time I got home I’d be a basket case. More hydromorphone. Slept (I suppose we can call it that) when we got home. Now I sit here awaiting further instructions. I may have to get a wheelchair if I have to go any distance. The oncologist promises pain relief after I start chemo. I’m looking forward to that.

That’s it for today. I’m beat!