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.