10 Today is not a good day.

Yesterday was okay. The day before was fine, but it’s hard to predict from day to day what my day will be like when I wake up in the morning. When I woke up this morning I knew that I wouldn’t be having a good day and contemplated just staying in bed. I try to maintain a modicum of a schedule so I like to get up around the same time every day although over the past couple of weeks my rising time has shifted a bit to the 8 AM side and is less inclined to stick to my former rigid 7:30 AM time.

I know my day won’t be a good one if I wake up from an unsound sleep with my body in full tingle mode, especially if it’s accompanied by the sensation of spiders crawling all over my legs. My reaction to my first cursory assessment of the state of my body is to hunker down, pull the covers over my head, and forget about it. But I don’t do that, do I. No, I get up, stagger into the bathroom clutching my cane in the hope that it will help me maintain my balance, and get myself into the living room where I usually plunk myself down into my recliner. I know I will spend the day in utter exhaustion reluctant to even get up to pee.

This pattern of not knowing until I wake up what my day will be like has been going on for years. That’s nothing new. I have no idea what differences in my daily routines will be wrought by the new chemical soup I will be ingesting in various ways as the oncologists stir up a new chemotherapy routine for me next week. The chemotherapy is bound to throw things out of whack in lots of ways some I can prepare for, some I can’t do anything about. Over the years, I’ve almost gotten used to being restricted in my mobility, but in fairly predictable ways. If I wanted to do something, like attend a meeting or go to a concert, I would know that if I did that I’d pay for two or three days after with exhaustion and pain. It was unthinkable to contemplate attending an event two days in a row or doing simple jobs around the property after a previous day of activity. My life has become less and less social over the years.

Truth be told, I’m a little depressed. The time between chemotherapy treatments has given me time to think, and thinking often gets me into trouble. So, I did an evaluation of my life to date going over high and low points, achievements and regrets. Probably a mistake, but one I’ve frequently made so I’m familiar with it. I even looked at pictures of myself over the years, from the time I was around two years old to quite recently. I thought about the different stages of my life, my time at home with my family, my time away to boarding school in Edmonton, my crazy teen years, working with my father, college, university, marriage, teaching, volunteer work, art, woodwork, etcetera. Then on top of that I overlaid health issues that I’ve experienced. I don’t need to go over all of my health problems here, but I had a few broken bones along with the discovery in the early 90s that I was vitamin B12 deficient and that I would need to inject B12 into my leg every month or so for the rest of my life. The discovery of my B12 deficiency was made when I complained to my doctor about fatigue, brain fog, dizziness, and that sort of thing. In 2002 I had my left kidney removed because I had renal cell cancer. Later I had an appendectomy. Still, I complained of fatigue, brain fog, dizziness and vertigo. There is a high incidence of Multiple sclerosis in my family so we chased that for a while but found nothing. Recently I was diagnosed with multiple myeloma which makes sense of all the other symptoms I’ve been having. I’ve probably had ‘smouldering’ multiple myeloma for years. So, now, I come to this:

I’m 73 years old (very close to it). I have bone marrow cancer, one kidney, B12 deficiency, degenerative disk disease (in my neck), arthritis, and who knows what else ails me. I’m old enough to die as Barbara Eirenreich argues and I’m okay with that, but the suspense is killing me. I’m being told that I could live quite a few more years with a few good ones thrown in there too. Still, I have incurable cancer and old age is coming after me. I’m beginning to envy people who die of sudden heart attacks or massive strokes. They have no time to think about all the things there is to think about.

I’ve discussed this with a friend of mine who also has multiple myeloma and his idea is that he doesn’t focus on his disease at all, or on his age, or any other potential killer. No, he focusses on what needs to be done: the shed needs a new roof, the canoe needs a new skin, baseboards need to be installed, grandkids need hugs. Dying will take care of itself when there is no other option, when it goes to the top of the priority list and refuses to be ignored any longer. I find myself thinking the same way. Yes, I get a little depressed when the extent of the threats to my life are displayed in front of me, but I get over it pretty quickly.

And I think about life and death. They aren’t opposites as we generally think of them. They cannot exist without each other. My life, like the lives of the nine generations of my ancestors who have lived in Canada are blips or interludes in the continuity of time and space. Mushrooms are a good analogue for us, I think. They push up through the ground cover from the mycelium below, flowering for a bit then melting back into the biomass to contribute again to the mass of life on this planet. Of course, for most of us in the course of history, thinking of ourselves and our species primarily as biological phenomena hasn’t been enough. The fact that we are temporary agglomerations of matter is not terribly satisfying for us and our big brains. We’ve loathed death and we deny it in every way we can, individually and socially. I try to face death as I face life. I try to put my life, my history, the phases of my body’s growth and decay in the broadest context I can. I don’t care to give them more importance than they are entitled to in the context of life on this planet.

My post on the social inequality in Emergency Departments is coming but my next one is about our immune system, the traitor that it is.

6 thoughts on “10 Today is not a good day.

  1. American Thanksgiving Day here and I am having a bit of a pity party trying to come up with a list of things to be thankful for this year, other than bad things I/we/my family haven’t got. But I am thankful, as are many of us reading this, for Roger in my life!

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    1. Thank you so much, Marilyn. It’s been a great pleasure to be in your life all these years too. At times we thought of visiting you in California but travelling can be very difficult. If things get better by January we hope to cash in our free tickets to anywhere WestJet flies, a prize Carolyn won in a contest earlier this year. Who knows where we would go, but it’s fun to think about it.
      Love and hugs.

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  2. Our heart goes out to you and Carolyn as you go through these struggles. We know that life threatening situations affect not just one individual but the loving partner and the whole family. I was hesitant about writing anything as it felt insufficient but the honesty and humanity you express in these posts touches me to the core. Thank you for that. If Anne or I can do anything to help out don’t hesitate to ask.

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    1. Thank you so much, Brian. I was hoping to retire in good health, able to travel and go out on canoe trips, putter in my shop and studio. Frankly, I knew there was something wrong quite a few years ago. Myeloma is not easy to diagnose and it goes into remission now and then. At this stage of the disease for me, there is no hope of remission without chemotherapy. With chemo I could live with better quality of life than I have now for a few more years. The difficult thing for me right now is the uncertainty. I just hope the new chemotherapy treatment I start next week will be successful. I guess we’ll know soon enough.
      Thank you for the offer of help. We’ll know better what we’ll need or want in the new year. Don’t be surprised if we contact you then.

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  3. Hi roger, I really appreciate your blog. It’s very insightful and brave and makes me think of my own life since I am about to turn seventy in 2 months. As you know, I had to watch my dearest husband steadily decline in his abilities as Parkinson’s disease took over both our lives and ultimately took away his life. It was very difficult to have any optimism. All I could do was to remember the happy times with our family and to be thankful that we took so many holidays.
    I really feel for you and your family and urge you to take a holiday if you get to feeling a bit more stabilized in your symptoms.
    Thinking of you all

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    1. Thank you, Gwyn. You understand better than most what it means to have to look after someone who can no longer look after themselves. Carolyn is doing a great job of looking after me although I’m not completely disabled yet at all. Moving around can be tough, but I can do it. I’m not sure what will come of the new chemotherapy treatments I start next week. We hope that I’ll regain some quality of life, enough to get on a plane and find a nice beach somewhere. I’d like that.

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