Yesterday afternoon Carolyn tucked me into bed. The zoledronic acid infusion I got Thursday at the hospital has left me feeling like I have a nasty flu combined with a smashing hangover. I fell asleep almost immediately but when I woke up I could hear the rain beating on our metal roof. I love that sound. Today, the dexamethasone is kicking in and it’s leaving me in a state of nervous fibrillation. I’ve never done speed, but I expect the sensation must be something like that. Now is a good time to write because I have this bizarre energy that needs an outlet. However, the dex gives me the shakes making it difficult to keep my fingers singly on the keys of my computer.
So, getting back to yesterday afternoon. Like I said I slept for some time and woke to the sound of rain pounding the metal roof. I just lay there. I find that lying in bed staring at the ceiling is not a bad way to pass the time. I could never do that before. I had the work ethic really bad when I was still gainfully employed and long after truth be told. Now, my body has taken charge of my reluctant mind and has forced me to sit still, to lie down and not feel guilty about it. Cancer has its upsides I guess, but I’m not sure that I fully subscribe to its methods. One thing for sure: There is no normal in my life anymore: sleep times vary, meals are still on schedule as are the ritual pill taking, but I can’t count on feeling the same way during each new cycle of chemotherapy that I felt on the previous one. Dex is predictable but the intensity of its effect varies. I only have to take it one more time on this course of chemo lasting until January. I start taking it again in late January when I start my second course of chemo with my fifth cycle. A course of chemo lasts approximately four weeks, a cycle, one week. At least that’s the pattern now. But I digress.
I’m lying on my bed focussed on the cedar beam that crosses the ceiling in the middle of our bedroom, light pouring in from the three windows just behind me at the head of the bed. I close my eyes and think about death. Well, more about dying than death, actually. It’s the process of dying that is absorbing me, not death itself which for too long we’ve considered the opposite of life. Dying is another thing altogether. Dying is the separation of consciousness and body. Consciousness in my estimation comes to an end at the point of death but my body, this collection of matter brought together by processes millions of years old, will immediately begin to become unglued. It loses its integrity as a collection of cells and begins to decompose, that is, to lose its composition.
I don’t have to tell you this. It’s hard to live for any length of time without coming across at least one death in the family, among friends, or by reading the news or obituaries on the local papers. We know about death although we don’t quite know what to make of it or how it pertains to us. It’s strange that for most of us we take for granted that ‘we’ don’t exist before our conception and birth and that ‘we’ become ‘we’ by a combination of hereditary traits, learned behaviour, and environmental factors. ‘We’ or ‘I’ are constructs. We are not born fully operational. We become ‘I’ over time, slowly developing personality traits, habits, and idiosycracies that define us as unique individuals. But we resist very strenuously the idea that if we come we must also go. But I digress again!
So, I’m back in my bedroom, lying on my back on my bed in that state of half sleep, very relaxed and I meditate. I meditate on my last breath. I’m thinking that dying is not much different than living. When we fall asleep and lose consciousness we have no idea whether we will awaken or not, we just take if for granted that we will. I’ve had two brothers-in-law die this past year. One died during the night in bed next to my sister. We say he died in his sleep. True enough. He wasn’t conscious when he took his last breath. Neither was my mother who died nearly two years ago, but she had demential and was so hopped up on morphine that I can’t say she died in her sleep. My sisters were there at the moment of her death. I missed it by a few hours. I was in pretty bad shape myself two years ago with symptoms on myeloma that went undiagnosed at the time. I was perennially exhausted, in a great deal of pain, and I couldn’t stand the vigil as my family surrounded my mom’s death bed waiting for her to take her last breath. I prefer to think of my dying as just another falling asleep kind of experience. My last one of course, but still.
Needless to say, there are only one or two ways of being born that I know of, but millions of ways to die. I like to think that my last breath will be in the comfort of home or at least in a hospice, somewhere nice. Many, many millions of people worldwide don’t die under such benign circumstances. Violent death is common. Five thousand Canadians die in vehicle crashes a year, fifty thousand Americans meet the same fate. I don’t fancy that as a way of dying, but if it’s quick, maybe. I can’t imagine being hacked to death with a machete after watching my family meet the same fate in 1994 Rwanda, or being shot by a stray bullet in Aleppo leaving me wounded and watching the blood spill out of me. No, give me a peaceful, quiet place to die.
I’ve been diagnosed with an incurable cancer but I’m told that it’s more like a chronic treatable condition than a CANCER that kills fast and unannounced. I’ve got some time to think about my last breath. I’m not sure if that’s good or bad. Certainly, I’ll roll with it. I remember clearly when I was a kid of twenty or so. I had a fairly serious back injury while working at a sawmill on Lulu Island and I needed back surgery to remove a disk in the lumbar area of my back. I was a kid in search of meaning in my life, not such an unusual thing. I remember lying in my hospital bed after the surgery, hanging over the edge puking my guts out and thinking to myself. I can milk this for everything it’s worth. I could stay on Compensation for a long time then go on disability or something along those lines. Or I could get out of the hospital and use this time to get my shit together. And that’s what I did. I got my shit together. I enrolled in the liberal arts program at Douglas College in New Westminster and never looked back. My injury allowed me time to think about my future without the pressure of work. That was luxurious, and it worked.
Now, I don’t need to get my shit together. It’s been together for a few decades and I’m happy with my shit. My encounter with cancer, in a way similar to my experience with my back surgery, is giving me time to think about my last breath, but to also remember that every breath I take until my last one is worth paying attention to and celebrating. Whatever I do until I take my last breath is not so important. Of course, I can’t help but do something and I will do things that have always mattered to me. It’s impossible to do nothing and still be alive. Even lying on the couch ‘doing nothing’ is doing something. Whatever I do will be the right thing at the time because it will be what I do. In any case it won’t matter one iota after I’m dead because ‘I’ won’t be around to care or experience regret or any other sentiment.
Thank-you for sharing Roger.
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You’re welcome, Pat. Nice to hear from you. Have a great Christmas and wonderful 2020.
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I know exactly what you mean about being consumed by the work ethic. This was engrained in me by family and teachers as a child combining with my own compulsive tendencies to make my miss whole decades of my life. This did not improve after “retirement” partly because of financial imperatives resulting from having to live in the US now on fixed Canadian income. I work every day and feel guilty if I don’t. This combined with family care responsibilities is actually making me look forward to back surgery and its aftermath as time to perhaps be content to lie in bed and look out the window at palm trees waving in the sun? Without the assault you are undergoing from chemical armies attacking those bad body invaders. However, things rarely pan out as envisaged do they? Can’t count on anything except probably the rain on the roof in your case and the best possible partner to share the burdens and dreams of a better future. Thank you for sharing and thanks to Carolyn for sharing you!
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Thank you, Marilyn. Reading your comments makes my day. I’m still teased daily by the work ethic, but I’m fighting it.
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Gees Roger. Sounds like speed talking to me 😉 Staring at the ceiling and expounding a ton of great thoughts with many digressions. Great coverage of many bases. Echoing my thoughts. Made me laugh many times.
Now you know why speed is so hard to get off of. Mental candy is addicting.
Thanks for writing you blog. I know it takes a lot of effort but we all are all benefiting from it, you and us.
Love to you and Carolyn along your journey towards the inevitable. It gets us all in the end as you so eloquently posit.
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This post was somewhat more challenging to write than some of the others because I just wanted to go off all the time on tangents. I still have a lot to say about somme of the topics I just introduced in this post.
Thank you so much for your support and encouragement. It means a lot to me.
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Hi Roger I have thoroughly appreciated your postings about your experience with myeloma in the medical system. Your writings on all levels has been awesome–descriptive, emotional on a scientific founration I found them engrossing, moving and instructive throughout. You are also inspiring in your approach to this medical challenge.
It reminded me of the book Tuesdays with Morrie
I spent a few days of respite in the hostel at the top of the hill just last week. They were amazingly well-equipped for me. there was an overhead lift so I could get into the bed easily. not many vacation homes are so accommodating. All because of disconnect when I was having a shower and became unresponsive. Not sure why but I came home with higher blood pressure than I find comforting. .
I hope this holiday period finds you spending comforting time with family and friends. May 2020 bring with it peace and joy and healing huggs John
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Hi John,
Thanks for your kind comments. I really appreciate them. I haven’t read the book, Tuesdays with Morrie, but it sounds interesting.
So, you’re home now, I’m concluding. What part of the hospital were you in? If I had known, I would have visited you. I’m at the hospital quite frequently so a visit probably could have been arranged. Your blood pressure has got to be a concern to you and your doctor. Here’s hoping the powers that be can get it under control. I’m taking meds to regulate my blood pressure and just about everything else, for that matter.
Are you getting around? Going into Fifth Street? I’ve gotten out once in the last three months except for medical appointments. I’m hoping that my symptoms attenuate soon and I can get out.
In any case, we need to keep in touch. I really appreciate knowing about your respite. Take care,
Roger
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