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.

I Have Cancer. Damn!

I was recently diagnosed (late September) with multiple myeloma or bone marrow cancer. My bone marrow has gone buck wild and is producing way too much of a particular substance the pathologist euphemistically calls ‘muck’. I’ve probably had it for some years, but the symptoms are very similar to those of other diseases and conditions making it difficult to diagnose. I’ve not been well for years. The past two years have been especially difficult and the last four months almost unbearable. I’m still functioning, but at a much-reduced level than I’m used to. 

This isn’t the first time I’ve had cancer. I had kidney cell cancer in 2002 and had my left kidney removed in an operation that left me with one (fully functioning) kidney. Now my remaining kidney is compromised because of the multiple myeloma so things aren’t looking particularly good for me. There are still tests to be performed and a prognosis to be arrived at, but as soon as the test results are in the BC Cancer Agency in Victoria will give me a call and arrange an interview and set a course of chemotherapy. A lot will depend on the stage of my myeloma. Some people do very well with chemotherapy and new drugs are being developed every day to target the specific pathogen that’s attacking my blood. I still may squeeze a few more years out of this old body of mine yet, but the next few weeks will tell the tale. Multiple myeloma is not curable, but it is treatable. 

I’m not afraid of death. I’ve often written about death and the cultural systems we’ve created to deny death, which actually build on our natural, biological aversions to disease and death. As you can easily ascertain by reading my blog this has been my main focus over the past few years. Dying is another matter altogether. I’m not particularly afraid of that either, but it is full of unknowns. I’m going through the various stages people do when faced with this kind of diagnosis: grief, anger, sadness, self-pity although these feelings are fleeting, and I soon get on to more positive emotions. I feel some guilt too. Yes, guilt. Guilt that’s impossible to escape in this culture. Guilt for succumbing to disease and death, the twin evils that we’ve identified as the greatest threats to us. In moral terms, and culturally, we abhor weakness, physical or social. Sick or poor people are to be feared in our culture. We tend to marginalize both if we can, but that’s not always possible because the world is not as simple as that.  

I know I’m on my last legs. I’m almost 73 after all and have had a great life. Nobody gets through life avoiding death except in novels and movies. I have no idea how long I have to live, but whatever time I have I just hope that my quality of life improves enough so that I can finish some paintings I’ve been working on, maybe re-canvas our canoe and continue writing this blog. In fact, I’ll use this blog as a kind of journal chronicling the process of being ill, then diagnosed, then treated. Stay tuned. 

Please don’t suggest any treatments or diets or whatever. I won’t be going to Mexico for any heroic treatments. (If and when I feel better we may go to lie on a beach though.) I’m not desperate. I won’t be buying a juicer either and I’ll continue to eat the great, wholesome mostly unprocessed food that I currently eat but my body will follow, as it must, the second law of thermodynamics. I’m okay with that.

I’m a Cancer Survivor but I won’t be a Life Survivor.

It seems odd for me to describe myself as a cancer survivor. Oh, I had cancer, alright. In 2002, very early in the year, I was diagnosed serendipitously with kidney cell cancer. I had gone to see my GP about acid reflux so he sent me to to the hospital to have an ultrasound to check it out. The ultrasound tech wasn’t looking for anything in particular is my guess, but she zeroed in on my left kidney and sure enough there was a lesion there that they strongly suspected was kidney cell cancer. The techs didn’t tell me that, of course. They don’t discuss the results of a scan with patients in my experience. My GP was the one to break the news to me. His office called me to tell me the doctor wanted to see me at 5:30 the following day. I didn’t think much of it at the time, but in hindsight, that was an unusual thing for my GP to do. In any case, he broke it to me and said that the best chance of a full recovery for me was surgery as soon as possible. Then he sent me off to see the urologist who would perform the surgery. They didn’t perform a biopsy they said because of the fear of spreading the cancer which at that point was restricted to my left kidney. Fair enough.

So, after all the preliminary tests were done and I had seen the surgeon and the anesthesiologist my surgery was scheduled for the third week of February. Normally, of course, I would have been teaching at that time, but that wasn’t going to happen so the college arranged for subs on very short notice, one of whom was to die of cancer a few years later. The thing is that there are no obvious symptoms with kidney cell cancer. As far as I know, it doesn’t usually affect kidney function, so my kidneys didn’t show any signs of stress or disease. I felt fine. I did some work around the property. It so happened that we were just in the process of buying a new place in Cumberland, BC when I was diagnosed. There was a lot to do. We had an acre of property with the house and several outbuildings. It was a good thing that I wasn’t particularly debilitated. That was to come later.

Needless to say, a cancer diagnosis is traumatizing for everyone involved. I was concerned for my family as much, if not more, than for myself. Strangely, I was convinced that this cancer wouldn’t kill me so I was pretty upbeat about the whole thing. Why I felt this way I have no idea. It could be I was in denial. We humans are great at denial, even me.

Finally, I had my day in the operating room. I arrived at the hospital with Carolyn early in the morning with hardly anyone around. We said our goodbyes and I was taken to the pre-op area. They didn’t waste any time getting me ready and into the operating room. That I remember. My GP was in attendance and assisting, although I didn’t see him in the operating room at the time. Later, my GP told me that the surgeon had cut me in half laterally on my left thoracic area so that the kidney could be gently lifted out helping to keep the cancer contained. He said it was quite daunting. That’s what happened. Since then I’ve made do with one kidney. One of my former students was a nurse in the OR. We joked around until the anesthetic kicked in. Having a former student in OR isn’t unusual because many of my students were in the nursing program and were taking my sociology courses as electives. It happened again last year when Carolyn went in to have her appendix removed. My former students are everywhere!

I tell you all of this so you get a sense of what I mean when I say I’m a cancer survivor, but I find it hard to describe myself as such. I think of cancer survivors as people who have had to struggle for weeks, months or years on chemo and/or radiation, losing their hair and being in horrible pain the whole time. I have known many people who have succumbed to cancer, but I also know a number of people who have fought it, and fought it valiantly for long periods of time and survived. My cancer recovery was not at all long and drawn out. The surgery put an end to it. Done. Well, mostly done. My surgery was seventeen years ago and my left thoracic area has been a source of constant pain since then, aggravated often by the slightest movement. The pain in my side never lets me forget about the cancer that almost claimed my life. It gets pretty tiresome at times and saps my energy, but I carry on because what else is there to do? No, suicide is not an option.

So, I guess I’m a kind of cancer survivor, but I won’t be a life survivor. No one has ever been, nor will anyone ever be a life survivor. Nothing can ‘cure’ us of death. My surgery has allowed me to live longer and that’s fine, but I’m still in line for dying. And that’s fine. I don’t have any illusions about life and death. Life demands death. Life cannot happen without death. Denying that gets us nowhere. So, every day is one more day to enjoy and struggle over. When it’s done it will be done. That’s it. I know that some of you might think it odd that I say it, but if I had died on 2002, that would have been fine too. Carolyn and my family would have been sad and would have mourned my loss, but they would have gotten on with their lives. That’s what we do when people close to us die, we get on with our lives until our turn comes.

Beauty in Death

Alder leaves – Skeletonized by alder flea beetles

The photograph above is of skeletonized alder leaves caused by alder leaf beetle larvae. The adults chew holes in the leaves while the larvae leave the ‘skeleton’ of the leaf intact but strip it of the ‘meat’ of the leaf.

We have several alders on our property and they all look terrible with leaves dropping or dead but still on the tree. From what we’ve read on the internet the trees generally survive an alder flea beetle infestation, but I’ll believe it when I see it. Of course alders lose their leaves in the fall, but ordinarily, the leaves drop off in a heavy wind and are generally intact yet brown. The skeletonization of alder leaves is the product of the little black alder leaf beetle larvae. The effects of the two processes are entirely different and are obvious upon inspection.

But enough technical stuff. The point of this post is that I find these skeletonized alder leaves quite beautiful. I love the intricacy of the connections of the veins. I love their strength. I haven’t used these particular leaves as a drawing subject, but I have drawn skeletonized leaves.

I can’t remember just when I drew these skeletonized leaves, which are not alders, but it was a few years ago certainly.

It’s difficult to see death in these leaves because we hardly see life in trees at the best of times. Forest companies don’t deal in trees, don’t you know, they deal in ‘fibre.’ When we see a load of logs on a logging truck going down the highway we don’t think of death (if we think of anything at all) related to the truck and its load. I have no real evidence to write this, but I do understand the culture and the language that denies death and this has that culture and language all over it.

That said, there is death in these leaves. They are dead or at least fully within the process of disintegrating and becoming compost for future plant growth. Their ‘meat’ is gone and all that remains is their ‘skeletons’. I find beauty in skeletons. I’m not sure why. We have lots of bones around here, bits and pieces from various deceased animals including a mouse, a tiny bird, raccoons and deer. Skeletons, for some reason, at least clean and bleached ones, have a simplicity and elegance that is always hidden in life. They require death to release them from their ‘meaty’ cover, to bring them to our attention, and to give them life. Maybe that’s why I find them so attractive.

I watched our dog die the other day.

Actually I’ve watched all of our dogs die except two. The only two we didn’t watch die were Little One and Chitka. Little One because she was no longer in our care. It was a long time ago and we had to give her up because where we were moving to wouldn’t have her. With Chitka, neither Carolyn nor I had could go in when he was euthanized. Too painful. All the others, Cedric, Oren, Max and recently, Wilco, all died at the hands of a vet with us present. They were all old and ready to go but that never makes it any easier. None of them did us the favour or dying in their sleep at home.

On August 3rd of this year, we took Wilco to the vet for one last time but not before we took him down to the beach in Royston and for a little drive around town. I still think about him every day, remembering his goofiness. He loved the Royston beach and used to chase his ball there for as long as we’d throw it for him. He  and his ball were inseparable for the first seven years we had him.

 

After that, he lost interest, we suspect because he was in a lot of pain and it just wasn’t fun anymore. He even stopped chasing cats and rabbits about 18 months ago.

He was probably sixteen years old and couldn’t walk anymore. I had to carry him into the car and lift him out. The vet staff took him into the clinic. Our vet, Carol Champion checked him out and agreed with our decision to have him put down. A few minutes later, as he lay in his usual position on the floor she gave him a sedative. When she was certain he was sedated she injected him with what I think was pentobarbital. It took less than a minute and I noticed he wasn’t breathing anymore. I stroked his back a few times and gave him a pat on the head but he was gone. Carolyn and I were very upset but the staff at the clinic was super and so supportive. I find it very hard not to cry on these occasions so I just let it happen. I miss him a lot.

Having Wilco with us for 10 years or so, watching him with his ball, stalking the fish in the aquarium and chasing bears on the logging roads and on camping trips makes it hard to let him go. He was family.

I’ve said this before but I’ll say it again. If I’m in a lot of pain and immobile and as old as Wilco (relatively speaking) I’d be quite happy to die like he did, surrounded by caring people not willing to watch him suffer anymore.

After he was euthanized, he was taken to a pet crematorium somewhere north of Courtenay located on a working farm where he joined a number of other pets to be cremated together and have their ashes spread out on the fields.

Not all animals have the idyllic life Wilco lived, nor the peaceful, loving death. Of course every living thing is on a death trajectory. That’s no surprise. Essentially, living and dying are the same process. That’s one of the main reason we are so conflicted as a species around life and death. We fear life because we know it will bring us death. Our culture, our politics, our everything are aimed at eliminating threats, imagined or real,  to our ‘lives’. We insist that our deaths must be meaningful or we deny death altogether.

I’ll get into a long diatribe into the essence of life and death later, in another series of blog posts although you’ll find the archives in this blog full of references to death denial. Suffice it to say for now that life must consume life. Up to this time, life on this planet has been the mutual devouring of species. Can that change? Should we be more ‘humane’ in how we raise and kill other species for our own consumption? Does it matter how long a calf lives before it’s slaughtered for us? Does it matter how much pain and suffering we inflict on other species in the name of scientific research or simply to grace our dinner plates? Is life really just suffering? For now, I’ll just leave you with these questions. I may offer up answers, at least tentative ones, to these questions in future posts. Stay tuned.

From the Times Literary Supplement

https://www.the-tls.co.uk/articles/public/grave-expectations-death/

Until death do us part. This is a great review of a subject most of us dread. The fear of death and dying and the obsessions that fear engenders often keep us from living life to the fullest. Are we programmed to fear death? Is it in our genes? It is a huge part of our culture.  Fully institutionalized death denial permeates deeply into our everyday lives whether we are religiously inclined or not.

Read on.