A Lesson From My Mother: It Turns Out We Die From The Feet Up.

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.

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.

So now what? (…and microscopic events)

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?

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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.

Perturbatious Times (and wee bugs)

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 ???

Seventy-three Years At It, Birds, and Bees.

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!

St-John’s Wort

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.

In a previous post I wrote:

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.

Addendum

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.

Two sickos, a baby and a garden.

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.

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.

Me

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!

Matilda (Tilly)

Matilda (Tilly)

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!

Describing Pain can be a Pain.

But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.

Princess and the Fountain.
Puppy. No name yet.

So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.

I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”

Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”

One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.

So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.

Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:

Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.

Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?

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1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.

One Step Forward and Two Back.

Yeah, you might say that I’m feeling less full of possibility and life today than I did a few weeks ago. I’ve written about this already so no use going over it again in detail, but it’s worth mentioning that a few weeks ago I seemed to have a breakthrough in my chemotherapy. I suddenly got more energy and was able to do physical activity like I had not been able to for months before. That was great. My lab results kept coming back suggesting that the multiple myeloma was getting beaten back. My lab results are still great. So, lots of reasons to be optimistic, cheerful, even. Then this happened:

A couple of weeks ago I started developing excruciating pain in my back and legs. Well, I’m no stranger to back pain. I’ve had back and kidney surgery, enough to leave me with chronic pain and I have arthritis and degenerative disk issues. I have lots of reasons to have back and leg pain. Besides, I’m seventy-three years old! But, this was different.

Pain from arthritis, degenerated disks and muscles can usually be mitigated by stretching, heat, that kind of thing. The pain I’ve been feeling for the past two, going on three, weeks is not affected at all by the kinds of therapy I would normally have applied to pain. This pain doesn’t originate in my muscles or in my bone. This is neurological pain and its cause is most likely one of my chemo drugs, bortezomib. This is the kind of pain that won’t allow me to sleep. This is the kind of pain that pushes me to double or triple my intake of opiates (hydromorphone), leaving me muddle headed and even depressive.

It’s true that the intense pain I felt a couple of weeks ago has attenuated to some extent so that I can now try to cut back on my pain meds to some extent. Still, last night after taking a pretty hefty dose of hydromorphone, I had to take even more because the pain just wouldn’t allow me to sleep at all after 2 AM. It’s evening now and I’m just now getting over my opiate hangover from last night. Tonight I will take half the dose of hydromorphone I took the last night, but I’ll also take acetaminophen because that seems to subtly help dull the pain as well. If I have to, I’ll take more hydromorphone, but grudgingly. I have reason to want a clear head tomorrow.

So, the reason I know that bortezomib is the culprit regarding my back pain is because I had a meeting with my oncologist in Victoria by phone last week and he’s the one who brought it up. He also indicated that he would communicate with my oncology team here in the Comox Valley to tell them to reduce my bortezomib dose from 1 mg/m² to .7 mg/m². I’m still waiting for that to happen but I’m hoping the reduction is cleared before my next injection on Thursday. There’s no guarantee, but the reduction in dosage may result in a reduction of my pain levels. That would be nice.

Okay, I’ve written about one step back. Now for the other step back. Once a month I get an infusion of a drug called zoledronic acid. It has a number of side effects: This from a website:

In rare cases, zoledronic acid may cause bone loss (osteonecrosis) in the jaw. Symptoms include jaw pain or numbness, red or swollen gums, loose teeth, or slow healing after dental work. The longer you use zoledronic acid, the more likely you are to develop this condition.

Osteonecrosis of the jaw may be more likely if you have cancer or received chemotherapy, radiation, or steroids. Other risk factors include blood clotting disorders, anemia (low red blood cells), and a pre-existing dental problem.

Other side effects include severe pain in the joints, bones, and muscles. Jeez. The main benefit of zoledronic acid for me is that it may prevent the lytic lesion in my right femur from getting bigger or just spontaneously breaking my leg. So, the oncologists carry out a cost/benefit analysis and they prescribe drugs based on the best possible outcome.

Now, however, I’m feeling some sensitivity in my jaws, both upper and lower teeth. That is very concerning to me. My oncologist suggested I consult with my dentist again and I’ll call his office tomorrow to see if I can set up an appointment, as reluctant as I am to do so in Covid Times. I’m not sure what he can do, however. I’m not sure the damage can be reversed, and zoledronic acid is not a drug one can stop cold turkey. I always prided myself on keeping my teeth in top shape and now I’m hoping to just keep them!

I called this post “One Step Forward and Two Steps Back”. The two steps back are about my experiences with bortezomib and zoledronic acid. The step forward is that the myeloma in my blood is pretty much gone. The course of treatment I’m on is very successful for me. I’m loathe to go off of it and so are my oncologists. So what do I do? I have another 18 weeks of chemo before I go off of it for who knows how long. I will go into remission but I’m also guaranteed to relapse. Only time will tell how long I’ll be in remission. It’s also guaranteed that I will die in the foreseeable future, even if that’s not for another ten years. Judging by how fast time has passed getting me to 73, I can only imagine that ten years will go by pretty quickly.

Is all the pain I’m experiencing now worth it? The existential questions about life and death still haunt me. What the hell difference will it make if I live another ten years or not? Whatever. Then I make a video about Carolyn’s gardens and we’re getting a puppy. What does that say about me and my questions?

I just hope I get some sleep tonight.

Garden Serenity Amidst Uncertainty and Rising Tension Everywhere.

Please view the video that is linked below following the map of the property.

It’s a video I produced of Carolyn’s garden over the past few days. I’m no pro. That will become obvious as soon as you start watching. However, I felt a real need to post something positive of something beautiful. Not only are we facing the difficulties and challenges of multiple myeloma at home as a family, but we watch the news and witness the social restructuring caused by Covid-19, and we see the US facing very difficult times, violent times. We have friends and family in the US and it gives us no pleasure to see that country embroiled in the kind of racist injustice and authoritarianisms that has led to protests and violence. The militarization of the police in the USA (and in Canada) which has been going on since 2001 can only be a sign that preparations are being made to go to war against the very people who pay the taxes that support the police and the increasingly totalitarian American government. It’s a very complicated, dangerous situation. It’s hard to figure out, and harder to predict what will happen next.

So, take a break, relax…

For a few minutes enjoy my amateurish attempt at video production. I made this video in part because the Cumberland Community Forest Society cannot hold a garden tour this year because of Covid-19. Mostly, I wanted to celebrate Carolyn’s artistry in the garden. This video is a poor substitute for a garden tour, but if you enjoyed this video, please consider donating the price of a garden tour ticket to the Forest Society. Here’s the website address: https://www.cumberlandforest.com/protect/

Map of Property

This map should help you get oriented to the property. Carolyn created it for a garden tour a few years ago and edited it just now.

Now watch Carolyn’s Fabulous Cumberland Spring Garden 2020