I want my goddamned life back! Redux

[I wrote the post below in April, 2021. I’m still feeling it and still living with the issues I raised in this post in April! I think it’s worth a repost. Life is infinite, but any expression of life is finite. As expressions of life, some of us are more inclined to accept our finality, our death, than others. In April I was particularly pissed off about my lack of resilience and strength. I guess that my attitude in this regard has changed somewhat. I’m more inclined now to just accept my limitations and to accept death as the only inevitable consequence of life, and maybe have a little fun while waiting for it. I will die soon enough. This can’t go on forever! I’ve always understood death from a philosophical and anthropological perspective. Now things are getting more real every day. It’s a bit scary, but it’s not something I turn away from. Of course, I may feel differently about all of this if you ask me about it next week! So, don’t ask me.

On another topic entirely, I’m concerned about this blog. I’m getting tapped out as far as writing about my life, its trials and tribulations. I do have a lot of things to write about but they are less personal and more sociological than the content of most of my current posts. After all, I am still a sociologist. Early on in this blog, in 2013, I wrote extensively about Ernest Becker and his books, The Denial of Death and Escape From Evil. I still consider these books to be critical as they confront the issues of the many cultural ways we try to deny death, like misogyny. I’m still amazed at misogyny and its close relative, patriarchy. I may write soon about religious denials of death as expressed in Sunday rituals and the overwhelming need many of us feel to transcend the physical beings that we are, a need fulfilled by religion. I will write too about the recent implantation of a pig’s kidney into a human. Just think about the philosophical and sociological implications of that as you eat your bacon for breakfast!

Ciao for now! Read on…]

I may want it back, but of course I can’t have it back. I can never have it back at least not the way I lived it when I was fifty years old. We can’t live backwards on this planet. It’s just not possible to go back in time. Furthermore we can’t achieve the physical vigour at seventy that we had a forty. Cognitive vigour is another thing entirely, but I find that since my retirement, I’m just not as sharp as I used to be. Writing this blog helps me keep my cognitive skills in some state of repair, but it’s harder all the time to maintain a certain level of critical skill when the couch beckons. It’s perfectly okay to be lazy in old age although lazy has a moral connotation that doesn’t apply to inactivity in old age. Strangely enough, there is an expectation in our culture that the aged should be occupied at productive activity even in old age, or we should at least go golfing and volunteer at the local SPCA. I was caught up in this moral silliness for a while, but cancer soon disabused me of any expectation that I could stay active in old age. My mobility is highly compromised and was even before my cancer diagnosis. But that’s okay. I had my time being physically active and strong. Our lives are made up of stages. I’m on the last stage.

Every now and then I forget how old I am and the fact that I have cancer, arthritis, and degenerative disk syndrome. In this forgetful state I try to do things that I did easily when I was 30, 40, 50, or 60, even 65. For instance, today I got it into my head that I could still chop wood. Silly man. It was just one piece. I thought there would be no harm in that but Carolyn reminded me that I would pay for my silliness later, maybe tonight. The thing is that one of my chemo meds is a steroid called dexamethasone. I take it just before I go to the hospital for my Daratumumab infusion. It reduces pain and increases stamina. It also gives me the shakes and a false sense of capacity. That’s when I think I’m still physically capable of doing things like working in my shop or cutting woodblocks for printing. [I haven’t given up yet, damn it.]

So, that’s it. We all know that human life is finite. We speak as though we understand and accept that. But you know what? There is a ton of research that establishes beyond a doubt that we generally do not accept the finality of death. I’ve written about the denial of death over and over again for decades. But you don’t have to count on me for information and confirmation. Just consult the bible in your hotel room. Or just go to the religion section in your local library, although I’m reading a novel at the moment that deals with death avoidance in quite a non-religious, creative way. The novel (the last of three in a trilogy) is set on Mars sometime in the future. It’s called Blue Mars which follows Green Mars and Red Mars. About half way through the book one of the lead characters, Nirgal, who was born on Mars, takes a trip to Earth (Terra) and almost dies. To understand the quote below it’s important to know that Martian scientists had developed a longevity program that allowed people to live much longer than they would normally have. People would have to have this procedure involving stem cells and telomeres repeated at intervals. Some of the characters were a hundred and fifty years old and more.

“But Nirgal had seen Simon die even though Simon’s bones had been stuffed with Nirgal’s young marrow. He had felt his body unravel, felt the pain in his lungs, in every cell of him. He knew death was real. Immortality had not come to them, and never would. Delayed senescence, Sax called it. Delayed senescence, that was all it was; Nirgal knew that. And people saw that knowledge in him, and recoiled. He was unclean, and they looked away. It made him angry.”

from “Blue Mars (Mars Trilogy Book 3)” by Kim Stanley Robinson

So, even in this scientific, atheistic world, people longed for a longer, productive, and meaningful life and a painless senescence followed by immortality yet as Nirgal points out, ‘delayed senescence’ is all that people could hope for. Even if they lived to be a thousand years old, their lives were still finite, albeit much longer than what one could expect without the longevity treatment. As the quote highlights, people sensed that Nirgal knew about mortality and shunned him for it.

I understand senescence because that’s what I’m living now. It is not delayed for me. Chemotherapy is nothing more than a longevity treatment. As we undertake chemotherapy we expect to live longer (see my next blog post) but, as I’ve learned, the price of chemo for me is reduced capacity although that’s not true for everyone and for every kind of chemotherapy.

Dexamethasone for the Win!

Last post I more or less said that I would not write about pain anymore. Well, that’s not really practical if I want to write about my life so that idea is out the window. Lately pain has been my life. It’s dominated everything that I do and don’t do (because of it). So, away we go.

Along with the general pain in my legs and back from the chemo treatments I get, I have serious neck issues that are fairly common in older people, that is, vertebrae that collapse or the passages in the spine shrink (stenosis). For all of you young’uns out there, this is your future. However, most people don’t have pain to accompany these age-related changes. I just happen to be one of the lucky ones to get excruciating pain in my neck that includes cramps and a low-grade throbbing pain. Most of this I can handle. The cramps require immediate attention much like a charley-horse in the leg muscles. I often wear a neck brace to keep my neck from moving too much and inducing the cramps. In fact, I’ve just put one on because looking down on my keyboard is a sure way of bringing on a cramp.

I’ve been exasperated with my neck pain because it severely limits my mobility and I want to do some painting, drawing, and boat work. As soon as I look down for any length of time, I get a cramp and that really cramps my style, if you know what I mean. So, I called my GP. He, I’m sure being sick and tired of me complaining about pain referred me to the Pain Clinic at the hospital in Nanaimo. They called me from the clinic surprisingly quickly and we set up a telephone appointment with Dr. Pariser, one of the doctors who works at the clinic. We decided on a procedure. It would take place on October 6th, yesterday. All that was left was the waiting.

Carolyn drove me down to Nanaimo yesterday morning when I got to see Dr. Pariser. We decided on a treatment that’s been around for a long time and that works fifty percent of the time and only after a month following the procedure. It (the procedure) involves injecting a steroid in the spinal cord to deaden the pain. It’s clinically referred to as an epidural. Epidurals are sometimes given to women during labour but they are not uncommon for lower back pain.

In my case the steroid was dexamethasone. I’ve often mentioned dexamethasone (dex) in my previous posts because it’s a staple medication of my chemotherapy and it has interesting side effects. I was a bit surprised when Dr. Pariser told me that he would be injecting dex into my neck, but he assured me that there would be no adverse effects from adding this dosage of dex into my mix along with my monthly oral 12 milligrams taken in conjunction with my infusion of Daratumumab at the hospital. Frankly, I didn’t know what to expect in terms of side effects from the dex injection in my neck. It didn’t take long to find out.

Before I tell you about the effects of the dex injection in my neck I want to tell you about another source of pain I’ve had recently that prompted a visit to my dentist. It started innocently enough with a bit of sensitivity in an upper left molar. It has a large crown which has been there for some twenty-five years. X-rays showed a probable need for a root canal. Well, that was fine and dandy, but when could that be scheduled. I was in pain NOW. My dentist was very concerned and referred me to a group of dental specialists in the Valley that specializes in this kind of work. Great. Their office called me and cheerfully informed me that I was booked for an appointment on November 15th. Yahoo! That’s all I needed: a six week wait for a consultation, never mind the procedure. After whining for a bit I got the appointment moved up to October 15th. That was some improvement but still a long way off given the level of pain I was in. I mean, this pain trumped all other pain in my body. It was excruciating, it was relentless.

So, yesterday when we drove to Nanaimo I was still in a lot of pain, but it had attenuated some due to an onslaught of hydromorphone. I take hydromorphone daily in a small dose for pain associated with my multiple myeloma, its side effects and the side effects from the chemo. I take a slow-release dosage morning and night, but I also have a stock of what’s called breakthrough medication for times when the slow-release dosage just doesn’t cut it anymore. Over the last while I used a lot of breakthrough hydromorphone. It has a lot of side effects that I don’t particularly enjoy, like insomnia, but too bad about that. I needed pain relief and damn the torpedos! It’s a good thing I had my breakthrough hydromorphone.

This is where serendipity comes in. I love serendipity. Dex can relieve pain. I had pain in my mouth as well as my neck so what would dex do for my molar pain? Well, I’m pleased to report that the dex pretty much killed the pain in my mouth, at least for now. I don’t expect the pain relief to last a long time, but any relief is welcome. I have the hiccups, a common dex side effect so I know it’s working. Strangely enough, I slept very well last night. Insomnia is also a common side effect, but it’s also a side effect of other meds I’m taking so who knows what’s going on in my body.

As a bit of a side note, if there are scientists reading this, scientists interested in pain and its management, you might want to think about a way of letting others know how much pain we’re in. That wouldn’t have any pain relief effects, but it may increase positively the way most people react to people with chronic pain. I mean, it’s hard to know if someone is in pain or not. People can fake it. There are clues in bodily function and blood work, but not many that show physically. Arthritis can sometimes show clearly in the body. In the last decade of his life, my father’s hands became deformed with arthritis. He was unable to open them, and he kept them clutched against his chest. Maybe, if our pain wasn’t obvious, if our limbs glowed blue or green that would be a clear indication of pain. Whatever. Work on it.

So, in summary, dex was a clear winner for me yesterday and today. I still had a shake (liquid diet) for breakfast today like yesterday rather than my usual granola or toast, but I’ll carry on with that because I really like the shakes Carolyn makes! Besides, I expect my toothache to reappear as the dex wears off. So be it. Pain management is very complex because the pain never stays the same in terms of source or intensity. It’s like playing whack-a-mole, but with no fun involved.

Moments in my life #3: Dealing with Pain

If you read this blog regularly you will know that I am preoccupied with pain. There are at least ten posts wherein I address pain more or less directly. This one will make it eleven. What triggered my writing this post is a Zoom class I had yesterday on Somatics designed to help us deal with chronic pain. It comes from the Central Island Pain Program at the Nanaimo General Hospital, an organization I had something to do with several years ago after I experienced a lot of pain from kidney surgery. I’ll deal with Somatics at the end of this blog post.

Pain! There are a few people who do not experience pain at all (their condition is called congenital insensitivity to pain,(CIP) or also hereditary sensory and autonomic neuropathy type IV (HSAN IV). Those individuals who can’t feel pain wish they could because if they inadvertently put their hand on a hot stove element they don’t know about it until they smell burning flesh, that’s if their sense of smell is operative which it often isn’t. (There is some very interesting research reported on a Wikipedia site about the gene that is involved in congenital insensitivity to pain.)

So pain is not always a bad thing.

In fact pain is a signal that something is not quite right in our body. For instance, the sensation (pain) I feel in my left thoracic area is a result of surgery, as I noted earlier. I had my left kidney removed because of kidney cell cancer. That was in 2002 and the sensation has not gone away although it varies in severity. These days I don’t feel it that often but that’s because I don’t stress that area of my body by doing work or sitting inappropriately. A few years ago a doctor at the Pain Clinic at the Nanaimo General Hospital ultimately suggested that I have a tens machine implanted in that part of my thoracic area to relieve pain. I respectfully declined the invitation. In the Pain Clinic’s orientation session the staff told us that the pain we were experiencing in various parts of our bodies was really in our brains, not at the site of the trauma. Apparently it’s the brain that tells us that we have pain. If the brain doesn’t get a signal from the site of trauma, we don’t experience pain. I experience pain in various parts of my body these days and it seems that the pain receptors in my brain are quite active but the pain always seems to be located at the trauma site.

Pain is not just one type of bodily phenomenon or experience. If you go to the emergency department of the local hospital or to your family physician’s clinic you may very well be asked what kind of pain you are having. I always find that a difficult question to answer. Well, are you having stabbing pain? Or is it like electric shock? Or is it throbbing pain? My answer is often “yes” because I can experience several kinds of pain simultaneously. For example, my neck pain can be quite severe at times. I experience it as stabbing pain or what I call ‘charley-horse’ pain because of the cramping that accompanies it, but there’s always an underlying throbbing pain too that varies in severity. It’s caused by degenerative disc syndrome which is very common in older people and by arthritis. Simultaneously I’m having peripheral neuropathy and my legs hurt as well as my lower back. So I have lots of pain in various parts of my body. In fact, there are dozens of types of pain, some specific, some very general.

The Johns Hopkins Blaustein Pain Treatment Center website provides a list of pain types for our reading pleasure:

“At the Johns Hopkins Blaustein Pain Treatment Center, we provide treatment for the following types of pain:

  • Low back pain
  • Spinal stenosis
  • Vertebral Compression Fractures
  • Cervical and lumbar facet joint disease
  • Sciatica/Radiculopathy (“pinched nerve”)
  • Sacroiliac joint disease
  • Failed back surgery pain (FBSS) / Post-Laminectomy Neuropathic Pain
  • Neuropathic (Nerve) pain
  • Head pain / Occipital neuralgia (Scalp/head pain)
  • Hip pain
  • Intercostal neuralgia (Rib pain)
  • Peripheral neuropathy (Diabetic nerve pain)
  • Complex regional pain syndrome (Reflex Sympathetic Dystrophy –  RSD)
  • Herniated discs and degenerative disc disease (discogenic pain)
  • Neck pain
  • Shoulder and knee arthritic pain (osteoarthritis)
  • Myofascial (Muscular) pain
  • Post surgical pain
  • Cancer pain (pancreatic, colorectal, lung, breast, bone)
  • Pain from peripheral vascular disease
  • Anginal pain (chest pains)
  • Post-herpetic neuralgia (shingles pain)
  • Nerve entrapment syndromes
  • Spastisticy related syndromes/ pain
  • Spinal Cord Injury (central pain)
  • Pelvic pain
  • Thoracic outlet syndrome”

Well, shit, I can experience any ten of these types of pain at any one given time. So, if you ask me what kind of pain I’m having, take your pick. Don’t ask me to come up with just one, unless of course, at any specific moment a particular pain experience is taking centre stage as in my appendectomy.

Is it acute or chronic? Well, yes!

Acute pain is the result of injury. Chronic pain is the result of disease. That may be a classificatory simplification, but it’s basically accurate. To me, my neck pain seems to be both. There’s definitely disease going on in there, but if I move my neck suddenly or if I try to do something like draw, paint, or work on my canoes, the resultant pain feels like pain caused by an injury. If I (or you) have chronic pain from one or more sources, that doesn’t mean I can’t also experience acute pain, and vice versa.

And what about the intensity of the pain? Well, goddamn it, that’s another tough question to answer. Doctors and other sundry medical types generally trot out the ten point scale to measure pain intensity, but there is a list of ten scales here, so it’s not simple. Pain clinics are everywhere and are very busy these days. I’m currently attending the Pain Clinic at the Nanaimo Regional Hospital (again!). Well, I’m not really attending, yet. So far all interactions with the clinic have been by Zoom. But on October 6th I’m going to Nanaimo to have a steroid injected into my neck to see if we can attenuate the pain signals to the brain. That’s a good solution because surgery is not really an option and it’s so common among old folks like me that it’s hardly worth the bother to consider. Palliative care is the goal. It’s interesting, though, that the decision to inject the steroid is a tacit recognition that pain starts at the site of trauma. I have bone pain. It’s clear that that’s caused by multiple myeloma and its propensity to cause bone lesions. The bone lesions in my femurs result in pain signals to my brain where I’m told pain is experienced. So how can this kind of pain, or any of the pain I’m experiencing, be treated? Well, let me count the ways!

Just to be clear, I mentioned palliative care in the above paragraph. As this website notes, palliative care is all about pain management. It’s not the same as hospice care or what we sometimes refer to end-of-life care. So palliative doctors (there are some in the Comox Valley) focus on pain relief mostly for chronic severe pain. They offer a number of treatments for pain relief.

Overall, there are many treatment options for severe chronic pain. Medications are commonly used for pain relief. Opioids like hydromorphone are quite often used. I take hydromorphone orally every day. Gabapentin and nortriptyline are two I’m familiar with but there are hundreds or meds used for pain relief (Google it). Surgery is often used to relieve pain as are injections of various kinds like the one I’ll be getting next month where a steroid will be injected in my neck. There is a procedure where a cement is injected into vertebrae to relieve pain and there is a procedure where a balloon is used to open up the spaces in the vertebrae blocked by compression.

The Pain Clinic at the Nanaimo General Hospital offers many options for classes designed to help one address pain by conscious activation of the autonomic nervous system with gentle ‘exercise’. Somatics is a practice used to slowly and consciously re-program the nervous system to deal with pain. I’ll give it a try. Muscle tension is a major source of pain so anything that can relieve tension is worth a try. So far, for me, medications have been the major treatment I’ve received for pain relief. They haven’t always worked that well. Hydromorphone works but to relieve pain I need to take so much that it leaves me cognitively impaired and that’s not something I’m willing to entertain. So I put up with some pain so that I can retain some cognitive and psychic sharpness.

That’s enough for today, and maybe I’ve written enough about pain. Thanks for reading my posts.

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Fall is upon us. I’m liking it.

It’s late September and Fall starts by the calendar in the next couple of days. It actually started about three weeks ago reckoned by dropping temperatures and increasing humidity. I quIte like this time of year. Cool temperatures and refreshing rain. I managed to get out yesterday. We went to the official opening of our new firehall and to the Foggy Mountain Fall Fair where we bought some T-shirts at the Cumberland Community Forest Society booth and some goodies (including Palestinian organic olive oil) at the World Community booth before getting some lunch from a food truck the name of which escapes me (Farmers something or other- the food was excellent). I was quite tired from a poor night’s sleep the night before, but everything turned out okay. I had a nap when we came home while Carolyn went out for coffee with a friend. Chemotherapy is keeping me alive but there is a price to pay. I get tired easily and the pain is still a big part of my life. The fact that I’m seventy-four years old may also have something to do with my lack of spark! Of course it does! I’m walking some, and I’m going to try riding my bike later this week when there is less rain in the forecast. I’m willing to pay the price. I always seem to benefit from exercise even though there is short term pain involved. I’d sure like to get off hydromorphone and gabapentin, but the withdrawal symptoms are hard to take. Tomorrow I hope to get some work done on the canoe. I may just do a blog post on that project alone. I’ve done a bit of drawing lately too but my neck pain really puts a damper on any sustained drawing practice. Sometimes I wear a neck brace and that helps.

Plant life here in the garden is both rejoicing at the rainfall, and at the same time preparing for the dormancy of Fall or the end of life. The vegetable garden is almost done. The raspberry plants are still throwing out a few stragglers but are pretty much done as are the blueberries. We picked the pears a couple of days ago and the plums a couple of days before that. We now have several jars of delicious plum jam thanks to Carolyn’s hard work. The pears aren’t quite ripe yet so we’ll wait until the end of the week to process them. That’s always a bit of a chore, but the results are worth it.

The ferns and grasses are still standing firm against the oncoming seasonal changes, but most of the flowers are giving up and bowing to the need to get some sleep. A few, like the begonias, sedums, and Black-eyed Susans

Begonia
Black-eyed Susans
Sedums

still buck the trend and proudly flaunt their colours against the overwhelming greens and browns of the fall and winter. Of course, speaking of colour, winter could also bring the white of snow, but that won’t be for some time yet. The long term forecast is for snow early in the season this year, but we’ll wait to see what happens. It’s always a crap shoot as to when the snow will come on the mountains, but the ski hill on Mount Washington generally aims to open in early December. It doesn’t always work out that way because the freezing levels are fickle in this area and it’s possible that skiing won’t happen until January. We should see the first snow on the Beaufort Range soon. Logging is about to start again close to the Village too. I’m of two (maybe three) minds about that. As a woodworker I can hardly condemn the practice of cutting timber and I know that my pension plan is invested in forestry companies, but I’m not keen on seeing logs go offshore to be processed either and I’m interested in learning more about how clearcutting and road building affect carbon sequestration and the production of atmospheric oxygen. We don’t have to worry about running out of atmospheric oxygen just yet (Google it). The processes of atmospheric change fascinate me at a scientific level. I’m particularly interested in long-term modelling of atmospheric change.

Pond Pano shot

The pond is full after the recent torrential rain. The sticklebacks will probably survive the winter as they have over the past few years (except for the year of the turtle!), but it would be good to keep Tilly out of it so as not to disturb their nests. That won’t be an issue as we enter Fall. Next summer she will be over two years old and we’re hoping she will leave the pond alone. That’s probably an empty hope. For now, Tilly loves the pond and she wades in it often then comes into the house to shake, spraying water everywhere. Yes, she is a bit of a brat.

Sculpture

I’m not sure why I’m making note of this here, but this sculpture lives up by the pond area under a big cedar tree and surrounded by ferns. I finished it with spar varnish the year I carved it (maybe three or four years ago?) and I thought about refinishing it because it’s showing signs of deterioration. However, I decided to leave it and let entropy take its course. I’m not concerned about how long it will last in the elements but it will be around long enough for me to enjoy it.

I guess that I’m attracted to the changes of seasons rather than to the seasons in their full bloom. That may be because the times that mark seasonal change are the best reminders of entropy and its importance in our lives and in life generally on this planet. I quite enjoy this time of year even though it marks the end of the warmth of summer and the beginning of the cold of fall nights and winter days. I’m not a big fan of the heat of summer or the cold of winter. I’m more a middling kind of guy.

Ta ta for now.

Ho Hum.

I guess it’s not really ho hum, but my life is definitely just ticking along. The ‘injuries’ I’ve sustained via myeloma and chemotherapy have prevented me from doing a lot of physical activity, but I keep getting the medical people telling me to stay active! It’s a tightrope I walk. Well, not a real tightrope, but you know what I mean. Do exercise? Pay for it afterwards for days with pain and joints that do not want to move. Don’t do exercise? Shorten my life and make moving around increasingly difficult. This is no fun. Well, it’s true that it’s no fun. Pain is no fun. But who promised me that I would have fun all the time? Fun is for the young and healthy, or at least for the healthy (of all ages). I really don’t expect to have ‘fun’ anymore. Should I be having fun? What kind of fun should I be having? Is there more than one kind of fun I should be having? Is reading a book fun? What kind of fun can I have when my left knee keeps wanting to fold on me without warning? If I get down on the floor, I may not be able to get up again. That’s no fun…I guess, although it might be fun for somebody to watch me try to get up off the floor. Is betting fun?

I really like this time of year. It’s cool in the shade and warm in the sun. We walked on the River Walkway this afternoon. It was cool in the shade and warm in the sun. We had iced coffee. Yummy. Is having an iced coffee on a warm, sunny afternoon on the River Walkway fun? I don’t know. Maybe I was having fun. I’m not sure.

I was going to write about pain and death today, but then I decided to keep it light. Pain and death are heavy. Fun is light! Long live fun! I DO really want to have fun, to possess it, to keep it close to me and give it a big hug but I’m not sure that’s the way it works.

You might think that chemo is no fun. Well, you might be wrong. Being hooked up to an infusion machine for a couple of hours has its moments. There’s no pain involved, but being tethered to a ‘tree’ with bags of saline solution and meds flapping around presents certain challenges when the need for a pee break presents itself. Thankfully, the ‘trees’ we use have battery powered brains and can be unplugged from the wall sockets. That way we (I in particular) can wheel them around to the bathroom and pee while we hang on to them and try not to pee on the lines. It’s difficult because the lines hang down quite far, often right in front of my pant zipper. It’s fine for women because you sit down to pee but for us guys the danger is omnipresent. Of course I can sit down to pee, but my anatomy resists that. The issue is compounded because the toilet seat in the bathroom attached to the Cancer Care Centre won’t stay up. That means I either have to hold it up while I also hold up the lines and other things or pee on the seat. Yes, the damned toilet has a slot in the front/middle but I’m not that great at aiming my stream which is erratic at the best of times. I don’t have the straight-as-an-arrow powerful stream I used to have in my youth. I used to be able to control my pee stream with little effort. Now I’m just glad when I can pee at all. I’ve gotten very used to just standing in front of a urinal or a toilet for several minutes at a time just waiting for pee to happen. It always wants to come, it’s always right there…but no. It can get embarrassing if there are other people around also waiting to use the ‘facilities’. It’s especially bad in theatres when at half time break during a musical performance or a play when peeing is so important but I just stand there with ten guys in line behind me waiting. Damn! So embarrassing. But what a relief when it finally happens. Now that’s a lot of fun!

The nurses in the Chemo Centre are a lot of fun. We joke around as they try to find a vein in my arm to poke. My veins resist entry. They hide very well. It’s a challenge for the nurses to find a vein in my arm on the first try. It gets a bit messy if it goes to three tries. If it does go to three tries the first nurse generally gives up and lets another nurse have a go. Whoa. That’s a lot of pressure to perform! I freak them out by pointing to good possible spots then watch them stick the needle in. They think that’s weird. Most people look away when they get poked. One of the nurses gave me a soft ball the size of a tennis ball to squeeze all day long. That, apparently, makes the veins stand out. I think it may be working. She got it first try last time I was in.

I talk to my local oncologist next Wednesday. That will be fun. He’s a nice guy. We always have pleasant conversations. Did I say I like this time of year? Well, I do. Summer is almost over so I can get back to regular blogging. I must say, I’ve been lazy this summer and have been hooked on cat videos on YouTube. I’ve also gotten tired of writing about chemo and the life of a cancer patient. Oh, I’ll still write about those things, but I’ll also throw in lots of other bits of stuff. Stay tuned.

Happy birthday, David.

Moments in my life #2: Withdrawing from opioids

It’s now 5:11 AM on Friday, August 27th, 2021. I just came downstairs to my recliner/writing station. I’ve been awake since 2 AM in a dexamethasone induced insomnia and decided that it was unproductive to just lie there thinking about nothing in particular (or a multiplication of musings about my life and career) when I could be downstairs at my computer where I could retain in writing some of the musings that had come to mind as I was lying in bed with my hands behind my head in a position not particularly inducive to bringing on sleep. So, if I had no possibility in my Dex determined insomnia to fall asleep, I might as well come downstairs. Princess Pretty Paws seemed to have no objection so here I am. She does expect that if I come downstairs, I will give her some “kitty crack”, marketed as cat treats or whatever. She’s addicted to her treats and will not be denied so I obliged and before sitting down I laid out a few bits of her favourite crack to munch on. She was appreciative if I can deduce that from her silence and aloofness. She’s now sitting in the kitchen awaiting another few bits of crack, but they’re not coming. She isn’t complaining so I won’t pay any more attention to her. If she meows a lot I may get up and indulge her. Oh wait, she’s just come over and is threatening to march all over my keyboard, so I’d better get up and give her a few treats. So, that’s that. Now I can get to the topic at hand, that is, withdrawing from opioids.

Some readers of this post might consider this offering as a confession of failure. It may be viewed that way, I guess, but it’s more, in my mind, a reflection on the vagaries of life and responses to unintended outcomes and life-threatening events. I was first diagnosed with multiple myeloma (bone marrow cancer) in the fall of 2019. It was clear to Carolyn and me that I had been suffering from the effects of myeloma for many years and the resulting MRIs and CT scans confirmed that: for one thing, my femurs were being excavated by myeloma and my left femur had a ‘lytic lesion’ of 10 centimeters in length at the distal end closest to my knee and that the whole-body chronic pain I was dealing with which was clearly an effect of myeloma. That explained why I was in such constant pain all the time and increasingly unable to engage in the kinds of wonderful activities I had anticipated being able to engage in after my retirement in 2012. Of course, age plays a huge part in a body’s preparation for death, its entropy. We inevitably get weaker and have age-related physical symptoms that preclude strenuous activity. I don’t think that evolution had in mind (so to speak) that we would live so long. So now most of us over seventy have back and neck problems that tell us it’s time to slow down and forego the strenuous activities that were the hallmarks of earlier life. 

When I was finally diagnosed with myeloma, I was prescribed pain medications on top of the chemo meds I would be taking for the foreseeable future to deal specifically with my cancer. One of those meds was hydromorphone, a synthetic opioid much stronger than morphine. After some time, I was also prescribed other meds to deal with the neuropathic pain I was suffering brought on by myeloma. I was offered and take gabapentin. I was offered, took nortriptyline, then stopped taking it a few months back because I couldn’t stand the side effects it produced: unable to taste my food, enjoy eating, and I had dry mouth all the time. Enough of that. 

So, I’ve been taking a low dose of hydromorphone in two forms since late 2019. One form is a slow release 3 milligram tablet taken in the morning and 6 milligrams in the evening. It’s designed to produce ongoing relief from pain. I was also prescribed 2 milligram tablets of hydromorphone as a ‘breakthrough’ med if the pain got out of hand. I did take the breakthrough hydromorphone occasionally especially after I had indulged in some activity more strenuous than was good for me. It always worked if I took enough of it. The most I ever took was 18 milligrams, and that was only a couple of times. Taking the hydromorphone in that form eliminated some of the more egregious types of pain I endured, mostly in my thoracic area, lower back, neck, and legs, well in my whole body is what I’m saying.

Lately I’ve been feeling that I might be able to forgo some of my pain meds because I’ve been feeling pretty good. My neck pain is still nasty and prevents me from painting and drawing. Sculpting, especially with a chainsaw, is out of the question. I tried backing off gabapentin and soon realized that that was a mistake. My neuropathic pain returned with a vengeance. I’m now taking a bit more Gaba than I had been. The reality is that every med I take has side effects. None are purely capable of producing pain relief without negative consequences. Dexamethasone, for example, one of my chemo meds, is a powerful pain killer, but has huge negative consequences over time resulting in severe bone deterioration. It’s a glucocorticoid (Google it). It is not to be taken lightly although in my desperate state over the pain in my neck, I will go to the Pain Clinic at the Nanaimo Hospital in October and have some Dex injected into my neck. According to the doctor there, it may help, it may not. What have I got to lose at my age by giving it a try?

Anyway, getting back to hydromorphone. Of course, I knew that taking an opioid was fraught with issues, not the least of which is addiction. However, faced with severe chronic pain in most parts of my body, hydromorphone produced some relief and allowed me to resume some of my former activities. I can still write. Problem is that there is a balancing act when taking opioids for pain relief. Take too much and you become brain-addled and incapable of much in the way of coherent thought. Take too little and the pain relief objective is undermined.

In the face of the negative consequences of taking a powerful opioid like hydromorphone, I decided recently that I would try to withdraw from it. I knew that I shouldn’t try going cold turkey, so I decided to do the right thing and go cold turkey. Go figure! I stopped taking it last Sunday. I figured that since I was on such a low dose, how could I possibly be addicted? Well, I am addicted and the proof of that was how my body reacted to the withdrawal. I’ve never experienced in my life the effects of withdrawal. I didn’t experience some of the more horrific effects like vomiting and diarrhea, but after a while I just couldn’t stand the overall drastic body dysphoria that was the outcome of withdrawal. There’s no way I could sleep. I was agitated to the point of distraction. I could not relax or stay still. I paced. I sat down. I paced again. It was awful.

Consequently, Carolyn and I decided that I should probably resume taking hydromorphone in the usual way until my appointment at the pain clinic to see what my cortisone injections might produce in the way of pain relief. At that time, I will consult with my family doctor to develop a proper plan for withdrawal. I am prepared, though, for the possibility that I will not be able to live without some chemistry enabling a life with a modicum of relief from the grinding chronic pain that is my constant daily companion. My pain meds, so far, have proven effective. It may be that I’m suffering from some sort of moral panic. I’ve done some self-psychotherapy and have concluded that there is a distinct possibility that I may be in a moral existential crisis. How could a big, strong guy like me need opioids? The answer to that question is still blowing in my mind’s wind and may be the subject of another blog post. 

 

Moments in my life: Princess Pretty Paws

The cat, Princess Pretty Paws*, has been sleeping with me quite regularly lately.

She hasn’t always done so. At times I never saw her at night because she tended to hang out in the crawl space upstairs and only come out in the morning for breakfast. So, a few nights ago she and I had a talk and she told me that she was taking over half of the bed, the lower half. Well, I’m not averse to sharing my sleeping space with a cat but it would have been better, I think, if she had chosen to sleep on the right or left side of the bed. I like the left side so I would have gladly given over the right side. But, no, she was adamant that she would take the lower half of the bed. Fine. It’s a big bed, so why not? She wasn’t asking for exclusive use of the lower half, but predominant use. 

The first night of this new arrangement was okay. We got along quite nicely. I could stretch my legs all the way to the bottom of the bed, and she didn’t complain about that. She did sidle up to my legs though and slept pushed right up against them. This was fine because I still had lots of room to move my legs into a better position. 

The second night, a couple of nights ago now, she was determined to lay claim to the lower half of the bed. If I stretched my legs down to the bottom of the bed, she immediately and aggressively pushed up against them. If I moved, she moved. Soon, I found myself on the outer edge of the left side of the bed, she in possession of the whole queen size bed except for a small sliver of it on the left edge. 

Look at this picture of her. She doesn’t look particularly nasty, does she? She’s quite sweet sometimes. She’s not a cuddler at all but she doesn’t mind being carried around if she’s in a good mood. However, she is prone to biting and clawing if she doesn’t feel things are going her way, or just to assert her dominance. 

She doesn’t get along with the dog (Tilly), but they haven’t really tried very hard. Tilly tends to want to chase Princess and that doesn’t go over very well with the Princess nor with me. I don’t know what Tilly would do if she caught Princess and I don’t want to find out either. It’s obvious that Tilly is afraid of Princess. 

Cats are generally weird and she’s a good representative of her species on this count. 
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*Given this name by my granddaughter, Ailey Vines. 

The Kindness of Evolution.

Lately I’ve been reading books by Kim Stanley Robinson. He’s a contemporary science fiction writer who ranges freely into dystopia and utopia. I first read his Mars Trilogy and I’m now following that up with New York 2140. Imagine New York fifty feet deeper in water than it is now. Half the buildings in Lower Manhattan are partially submerged and roads are now canals. Flooding has not stopped the rapaciousness of capitalism, however, which has gotten worse in the next one hundred years. It may just get its comeuppance though. Robinson’s work, although not high literature, is prescient in my estimation and is a fun read.

Most people would consider the drowning of coastal cities a disaster, and it undoubtedly is, but we don’t have to wait until 2140 to find out what coastal flooding can do. We’re getting a taste of it now. We’re also getting a taste of what fire can do as well as tornadoes, hurricanes, volcanoes, etcetera. Reading the news these days, and you’ll be introduced to fires in British Columbia, dams bursting in China, and floods ravaging Germany. So, disasters are not uncommon, and the News media are only too happy to tell you all about them. 

Still, we don’t seem to be able to get prepared for natural disasters so as to mitigate the worst of the damage they cause. Recently, Angela Merkel, the German Chancellor, opined that they would have to do better in the future regarding disaster preparation. I might note that disaster preparedness is only going to happen if there is money to be made in doing it. That may seem cynical, but history bears me out, I think. 

One thing we have to recognize is that there are many kinds of disasters, and they don’t all unfold at the same rate. A volcano usually happens at a very fast pace, but climate change, which must be considered a high magnitude disaster, unfolds are a glacial pace although some of its effects unfold as quickly as any natural disaster because, in effect, that’s what they are.

Something very interesting about human psychology is the surprise or denial we all experience in the face of disaster. Flooding? Well, we didn’t expect that now did we. Cancer? Surprise, surprise! Why me? Climate change? Nah, it ain’t happening. 

Robinson has an explanation for our reactions to disaster or catastrophe:

“…you can’t really imagine a catastrophe will hit you until it does. People just don’t have that kind of mental capacity. If you did, you would be stricken paralytic with fear at all times, because there are some guaranteed catastrophes bearing down on you that you aren’t going to be able to avoid (i.e. death), so evolution has kindly given you a strategically located mental blind spot, an inability to imagine future disasters in any way you can really believe, so that you can continue to function, as pointless as that may be. It is an aporia, as the Greeks and intellectuals among us would say, a “not-seeing.” So, nice. Useful. Except when disastrously bad.” (from “New York 2140” by Kim Stanley Robinson)

So, Robinson argues that natural selection has kindly provided us with a “strategically located mental blind spot” when it comes to disasters, including death. Death for all of us is the ultimate, unmitigated disaster, but we deny that it’s coming, or we just turn the other way and hope for the best. We just can’t believe or accept that a disaster is happening. I expect that other species have much the same reaction to disaster that we do. It would be impossible to be anticipating disaster all the time. As Robinson points out above, if that were the case “you would be stricken paralytic with fear at all times”. 

As Robert Sapolsky notes in Why Zebras Don’t Get Ulcers*, zebras are stricken with fear when they are chased by a lion, but if they avoid getting killed, they return to grazing on the riverbank as if nothing had happened. Humans, on the other hand, can imagine future catastrophe, but not in a way we can really believe. For example, as I drive down the highway, I don’t expect that around every curve an oncoming car will skid into my lane and crash into me head-on. If that were the case, I think I’d have to give up driving. Same goes for death. If I thought about my death every minute of every day, I would be unable to function in life. 

Thanks to evolution, we have a “mental blind spot” when it comes to catastrophes and disasters. Life would be impossible without it. Still, we must deal with the generalized anxiety that the possibility of disaster engenders, hence our proneness for getting ulcers and/or visiting psychiatrists.

*Sapolsky, Robert. 2004. Why Zebras Don’t Get Ulcers, New York: Henry Holt.

Up, up in the air.

What do I want to do with this blog? The thought crossed my mind that just giving up on it would not be the worst-case scenario. I’ve been at it for a few years now so it wouldn’t be outrageous for me to either quit entirely or maybe just take a break over the summer. Mygawd, I’m not making any money writing it. Lots of bloggers make money on YouTube with their blogs. I don’t, so what’s the point? Maybe I could monetize my blog, attach it to a video log and turn it loose on YouTube. After all, we DO live in a capitalist society. Might work. Probably not. 

The weather has been wonderful lately if you want to lay about on a deck. I sit on the deck close to the rock/fountain and watch the birds come down for a drink. The one in the video here is a female goldfinch we think. She flits around avoiding direct contact with the fountain. It would probably knock her over if she did. 

The wisteria gives them some shelter and protection before they come down to the fountain, but they’re still wary. Smart birds. There are cats prowlin’ around here. Our princess is one of them and she’s a hunter sometimes, mostly mice, but we don’t want to tempt her with birds. She’s being such a brat lately. She seems to have figured out exactly when I’m just about to fall asleep, then she pounces on the bed, meowling like crazy and poking my face with her paw. 

Tilly has been hanging around the pond a lot lately. She patrols the perimeter sniffing around trying to get frogs to abandon their rocks along the shore. I don’t like the way she’s been fixated on frogs lately. She come close but she hasn’t caught any yet. I’d be very pissed off if she did. She spends most of her time under the deck these days where it’s cool. She’s got such a thick black coat she must really suffer in this heat, but she never complains.

Got a call from my Oncology GP this morning. He noted that my bloodwork is coming back from the lab within reference ranges (normal). Tomorrow I go to the hospital for another infusion of Daratumumab. After that, I don’t get another one until the end of August. As of this month, I’m down to once a month for the Dara. I keep taking my regular chemo meds, lenalidomide and dexamethasone, three weeks on, one week off. So, I’m in a weird space where I have no myeloma detectable in my blood, but I’ll be on chemo for the foreseeable future, that is, until the drugs don’t work anymore. At that point they’ll put me on another regime. That means that I must be vigilant around the side-effects of the chemo. It’s not always easy to tell chemo med side-effects from pain med side-effects. 

For an old man, I’m feeling pretty good these days for about fifty percent of the time. I’m sleeping moderately well most of the time, but I have wakeful nights periodically. My neck is what’s tormenting me the most these days. According to my Oncology GP I have OAD (Old Age Disease). I can’t turn my neck more than 3% left or right. Maybe 4%. Makes it hard to do shoulder checks when I’m driving. Of course, I still drive. What are you thinking? I just have to turn my whole body when I do a shoulder check. That’s fine.

Technically, I have degenerative disc syndrome and it’s common among older people. I’m getting a CT scan early next month to confirm the diagnosis. Once I get the scan, I can ask my GP for a referral to someone who might be able to do something for me. That would be good. If I do get some relief, I’ll be able to do more writing, and maybe some sculpting. I’d love to do a bit of printmaking too. Or maybe I could just lie on the couch more comfortably. That would be good.

The improbable may just be possible.

[This is a short blog post because I want to share the information contained therein. Other posts, much less optimistic, will follow.]

The IMF, not the International Monetary Fund, but the International Myeloma Foundation has for many years invested money in research into the prevention and cure of multiple myeloma. Every oncologist we’ve ever spoken with has assured us that multiple myeloma is incurable but treatable. Now, there is open talk about getting to a cure for myeloma. 

The video and documents below explain the incredible advances towards the prevention and cure of myeloma. Obviously, I have a personal interest in this research. The cutting-edge medications I am receiving are giving me a chance for long-term remission of my disease, but even greater advances are being made and it’s all very exciting especially for younger patients who, if in their 40s, face decades of chemotherapy, stem cell transplants, and monoclonal antibodies. One of my sisters has a grandson with multiple myeloma and he is in his forties. Any advances in the treatment of myeloma and prospects for a cure are exciting to hear about, particularly for patients of his age. Please take the 3 minutes to view the YouTube video I attach below on the Icelandic research push. If that interests you, there is more information from Dr. Brian Durie’s blog a link to which follow the link to the video explaining exciting research being conducted and coordinated on the prevention and cure of myeloma under the Black Swan research umbrella. 

The IMF’s iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) publishes its first paper. https://www.youtube.com/watch?v=LskOC39mYx8

https://www.myeloma.org/blog/black-swan-research-projects-forge-ahead-2020