Not Dead (Just) Yet.

From the many comments I received after my last post A Time To Die I obviously left the impression that I was on my way to an imminent death. I guess the concept of ‘imminent’ is what the issue is. Without intervention I have no idea when I will die although I can set up a situation through Medical Assistance in Dying (MAID) whereby I can determine the time and place of my death. I’ve filled out the papers so that I now have the MAID option. The papers don’t obligate me in any way, and I don’t have to go through MAID if I choose not to. I don’t see any downside to being prepared by filling out the necessary paperwork well before I decide to use MAID or not.

This past weekend was a momentous one for me. I almost died for real, fulfilling the implied (somewhat exaggerated, certainly) conclusion of my last post.

After my infusion of Carfilzomib last Thursday, the first of my third cycle, I got some familiar symptoms: spiking fever, the shakes, insomnia, and pain, lots of pain everywhere in my body. By Friday morning I was in serious trouble. In spite of drinking copious amounts of water during the night, I could not pee, and didn’t even feel the urge to pee. It was obvious something was very wrong. At that point Carolyn called the Cancer Care Centre at the hospital. They advised her to get me to the ER as soon as possible. So, off we went. The Emerg staff got to work on me without delay, wheeling me into a room close to the nursing station, a room I had been in before on a previous occasion for the same reason.

They ran numerous blood and urine tests. They concluded that my kidney was functioning at less than fifty percent capacity. They installed a catheter and hooked me up for an infusion of liquids (lactated ringers). The ER doctor minced no words (strange turn of phrase) in telling us how close I was to dying. I filled bag after bag of concentrated dark and thick tea-coloured pee. I was formally admitted later in the evening and transported to the third floor, again to a familiar room across from the nursing station. Once there, my kidney quickly rebounded and resumed its more or less normal operation. By Sunday evening, after the staff was ensured that I had no infection and that my ordeal had been brought on strictly by an adverse reaction to Carfilzomib, I was discharged. The intent was to keep me in the hospital until Monday, but that was unnecessary at that point. I called Carolyn and she picked me up. I was one happy guy.

As I write this it’s Tuesday morning, September 20th around 9:20 AM. I feel that I’m slowly recovering from the weekend’s trauma, as much as an old man with myeloma can.

One thing I vividly recall from my three days in the hospital is that the many clocks all run on time, marking the seconds by the slightest but silent advance of the second hand. For long periods of time I was fixated on the clock and its inexorable movement forward. Sunday evening all I could think about was going home. The clock couldn’t move fast enough.

Another thing I recall is the change in my body odor. I was quite surprised by this. I shouldn’t have been because my entire body chemistry was under assault. I tried to wash frequently but being attached to my ‘med pole’ I called Ted made it very difficult to move around and get to the washroom. Of course, with my catheter I didn’t have to worry about going to the washroom to pee. That was kind of nice, actually.

Anyway, I should get to the crux of the matter here. I’ve decided that I can no longer continue receiving chemotherapy. Clearly it was killing me. In 2019 chemotherapy was offered to me as a way of mitigating the effects of myeloma. Instead, it exacerbated them for me. That’s not true of everyone receiving chemotherapy for myeloma or for other forms of cancer. Chemotherapy works for many people. I’m just one of the unlucky ones who has adverse reactions to chemo drugs, and I mean all chemo drugs. So now, I am palliative. I may still receive some treatment for my myeloma but it won’t be chemotherapy. It may be radiation or surgery, but even those options will have their limits.

I’m so fortunate in having very supportive family and friends. Our daughters came over from Vancouver on Friday to be with their mom and to come visit me. Coming from Vancouver with no ferry reservations is daunting, but I’m sure happy that they managed to get over here. It was definitely touch and go for me. I needed the support, so did Carolyn. My sister Hélène and her husband Roger came for a visit on Saturday. That was very pleasant and a welcome diversion from the hospital routine.

In conclusion, I must say that I received most excellent treatment at the Hospital this time around. That hasn’t always been the case, but this time we were very impressed by the care I received. Thank you so much CVH staff!

Chemo and life

July 27th, 2022.

It has been about twenty hours since my second infusion of carfilzomib. I take dexamethasone in conjunction with my infusion and that’s what I’m feeling the effects of predominantly at the moment. I’m dexed out, and I will be for a while yet. What concerns me the most is a repetition of the fever I got last Thursday as a side effect of carfilzomib. That fever at 38.9˚C sent me to Emerg for a long day on Thursday. The irony is that the fever is not caused by an infection, but that’s what the staff in Emerg will focus on. That’s what they know. And, of course, they do have to discount the possibility of an infection so they prescribe high doses of antibiotics. I don’t need antibiotics, but there ya go.

This time around, if I get a fever tomorrow AM (it started at 4 AM last week) I’ll know what to do about it. If my fever stays below 39˚C or so, I’ll stay at home, take a cold shower, use cold compresses and wait for it to pass. Last week the fever lasted maybe a day, and it fluctuated a lot during that time. It was funny in a way, because we went to Emerg for a second time last week on Thursday evening because my temperature had gone up to 38.9˚C. By the time we got there it had dropped to 36.6˚C. Well, that was a bit embarrassing. At that point they took some blood and put me in a room to then ignore me for 4 hours. By midnight we had had enough waiting and just went home. I don’t blame the Emerg staff. They couldn’t do anything in any case. But it would have been good to just send us home even if we hadn’t seen a doctor yet.

In any case, I’m a little apprehensive about the next 24 hours. I really need this chemo regime to work so I need to deal with the side effects and not let them force a stop to the regime. Carfilzomib is one of the last possibilities for me apparently. After that, I’m on my own. That means facing my myeloma without any help from chemotherapy. The consequences of that are well, terminal. We all get there, but I was kinda hoping to see my 80th birthday. That’s not rational, of course, because whether I die today or in 4 years makes little difference. After I’m dead, there won’t be any regrets. So, my hopes and wishes for a longer life are purely emotional.

August 3rd, 2022

So, as of now I’ve completed the first cycle of carfilzomib/dexamethasone treatment. No fevers after the first infusion. That’s great. The thing is I need this protocol to work. I won’t know if it’s working until I get my next blood workup in a couple of weeks. I meet with my local GP oncologist on August 10th, but we won’t have the results of my blood tests by then. We will meet, though, so he can assess how I’m doing. Blood work is only one factor in making decisions about treatment, but it’s an important one.

As usual, I’m dexed out after my last infusion of carfilzomib and 12 milligrams of dexamethasone taken orally. The next forty-eight hours will tell the tale regarding other side effects. I’m feeling alright given the circumstances. Strangely enough I have more energy when I’m dexed out, at least until it wears off and at that point I need to lie down and maybe get a little sleep.

I’m currently reading a book by Tom Robbins entitled Jitterbug Perfume. It hit the New York Times Bestsellers List in 1985. I read most of Robbins’ books back then along with books by John Irving and Kurt Vonnegut. Ostensibly about coming up with the definitive perfume, the book is all about the fear of death, immortality and dying. I can’t seem to get away from reading (and writing) about death and dying. That’s not surprising, really, given my time of life. Strangely, I feel I need to apologize for being so focussed on death and dying. After all, death, according to Ernest Becker, is one of the twin pillars of evil in our world, the other pillar being disease. It seems I’m immersed in the twin pillars of evil. So be it. It’s my life right now. Chemo is my life too at the moment. It’s a tough row to hoe sometimes because the end is nigh. But, it seems that we need to always focus on the bright side of life. Talk of death and dying are not welcome in a world that vociferously denies death and dying.

I know too many people right now with cancer, some with cancers much more aggressive than mine. Some want to talk about it, some don’t. Some have died recently, some are still dealing with their disease. Whatever type of cancer we have, we all face the same end. The ‘authorities’ claim that my cancer, multiple myeloma, is incurable, but treatable. Fair enough. However, the treatment can be quite harsh and whether or not it’s worth it is a question we still need to confront. That’s the case for all types of cancer.

As the song says, it’s summer time…and the living is easy. Yeah, right. For all you joung’uns with not a care in the world, you need to take this maxim and run with it. I’m not in a position to run anywhere. That’s fine. We’re all at different stages of life. Have a great summer.

The habit of life and a new chemo protocol.

July 18th, 2022

So, we went to the Hospital this morning to the nuclear imaging department to get a baseline assessment of how well my heart is pumping blood. That’s in preparation for my initiation into a new chemotherapy regime starting tomorrow since the one I was just on including lenalidomide, dexamethasone, and Daratumumab wasn’t working anymore and it was producing some very interesting symptoms like temporary paralysis or what my GP considered seizures. These ‘seizures’ didn’t last for more than an hour or two, but had lasting effects like extreme fatigue and headaches. I thought I might be having a stroke or something of that nature, but that’s not likely. In any case, my GP ordered a CT scan of my head. It found nothing! ⁉️He also ordered an MRI of my lower back. That will happen at the end of August. That might be revealing. I’ve had issues with my lower back since I was twenty years old.

Also this morning I injected one milligram of vitamin B12 into my left thigh. I do this every Monday because I have an inability to absorb B12 from food. Sometimes I inject it into my right thigh, just for variety. If you’ve never been tested for B12 you might want to consider it if you have a lot of fatigue. That may not be easy if you don’t have a family doctor, but worth it, if for nothing else, to discount it.

Tomorrow afternoon I go back to the Hospital for my first infusion of carfilzomib (trade name is Kyprolis). It has some interesting side effects and reportedly is hard on the cardio-vascular system, but is touted as a solid replacement for Bortezomib (Velcade). It’s relatively new on the market.

All the things I note above are to give me a longer life. That’s the goal. I’m into that, but eventually I’ll have to kick the life habit. We are creatures of habit. (see my note below) Are we ever. And the biggest habit we have is life itself. No wonder we are so reluctant to give it up.

July 19th, 2022

Well, tomorrow is today. Went to the hospital’s Cancer Care Centre for a 1 PM appointment for an infusion of carfilzomib. I got a low dose infusion, forty-four milligrams. I experienced no adverse effects that I noticed. My next infusion, next Tuesday, will be one hundred and fifty-four milligrams. That will be the ongoing dose I get every week for three weeks, then I get a week off before going back for another round of three weeks. So, my life is pretty much tied to the hospital at the moment. I may be able to alter my regimen a bit, but I don’t want to mess with it. I think that consistency is a major part of chemotherapy and I want this protocol to work for me for the foreseeable future. My foreseeable future is shrinking every day. That’s fine. That’s life. It’s interesting as I watch myself go through what little is left of my life, the recognition that my energy levels are dropping fast and that I can’t do things I recently took for granted. I have no regrets. I understand evolution and the need for death. I’ve played my part and will continue to play my part until there is just nothing left of me.

July 20th, 2022

Yesterday was a day filled with anxiety and doubt for me. A new chemo regime is always stressful. Will it work? Will I experience nasty side effects? Is this my last kick at the can? So many questions.

Thankfully, the crew of nurses and support staff at the Cancer Care Centre are amazingly calm and systematic. They patiently answer all of my questions, and this time around I had lots of them.

My infusions of carfilzomib are just a half hour long compared to one and a half hours for Daratumumab in my last protocol. However, for the first three weeks this time around they have me stay for an hour after my infusion for observation. That’s a good move because anything new like this is cause for caution. We were out of there by three thirty. Still, It’s an afternoon a week, and I need to be close to the hospital. No travel abroad, that’s for sure. I’m fine with that. Not much interested in travel right now in any case.

One thing I’ve noticed since I’ve been off of Dara and lenalidomide is that some of the symptoms I’ve been experiencing around my face seem to be attenuating. I can now feel my lips coming back online and my eyes don’t feel as puffy and buggy-outy as they have been for some time now. Maybe, just maybe, I’ll feel a little more ‘normal’ now. I hope this trend continues. The sensation around my eyes is particularly disconcerting. Anything to relieve that is good news. I’m feeling optimistic about carfilzomib but there’s a ways to go yet before we have any sense of whether or not it’s working to keep me alive.

I sleep well these days. That’s great. Of course, dexamethasone will mess with my sleep. I expect that and adjust as needed. It means that I may just read a little longer after I go to bed or wake up later and need to read a bit again before I can get back to sleep. I’m reading Agatha Christie at the moment. She’s such a good writer. There’s lots of murder and mayhem in her books, but some great problem solving too. Poirot and Hastings are principle characters in many of her books. Their interactions create a wonderful backdrop for their crime solving endeavours. Hastings is a great foil for Poirot. He’s not too bright but he is willing, and enthusiastic. The books do a much better job that the television adaptations of Christie’s work in terms of the dynamics of the Poirot/Hastings relationship. Read on. I paid one dollar on Amazon for all of Christie’s work on Kindle. What a deal.

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Just a note to end this post thing:

The fact that we are creatures of habit will be our downfall as a species.* We can’t seem to kick habits we know are bad for us. We know that fossil fuels are in the process of polluting the planet to such a degree that we may very well not be able to reverse the process. The pollution is what is killing us, not the fossil fuels themselves. We keep driving our cars and trucks. That’s a habit hard to kick because we also have a habit of spending money, and we have to get that somehow. Working for others (employment) seems to be the main way we do that, but contract work is also quite common. Employment is a relatively recent way of organizing labour. I wonder how much longer it will last. What I can guarantee you is that it will go the way of the dodo bird just as everything else does.

One huge issue we face is the generational lag that dominates our lives. We tend to think that we can live the way our parents and grandparents lived. We buy big fishing boats and huge RVs to wander around the oceans and roads like the 20th Century had never passed. We all want to live in detached single family houses (around here at least). Well, our parents did it, why can’t we? Maybe it’s because fish are disappearing at an alarming rate and gas is so expensive and polluting. But we’ll carry on because that’s what we know. We do feel anxious about it. That anxiety sometimes gets squished out of our minds in strange ways such as in ‘freedom’ convoys and ridiculous conspiracy theories. Oh well, steady as she goes. We all get to the wall sooner or later.

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*All animals are essentially creatures of habit. We all develop habits of life, some learned, and some tropismatic. We cling to them as long as we can. So it goes. It works as much for bees, chickens, and elephants as much as it does for humans.

Sorting Things Out

The gnawing fatigue and peripheral neuropathy I experience every day from myeloma, chemotherapy and B12 deficiency I can understand. Other symptoms are less understandable and less tractable. Some of them are ongoing, some temporary.

So, today I’m telling you a story of a particularly nasty experience I had this past weekend that defies classification and that has stumped my oncologists. That may be because it isn’t related to myeloma. I don’t know. That it turned out to be temporary I consider to be a good thing, but I have no real justification for feeling that way. I won’t describe in graphic detail everything I experienced. That’s not necessary, but I will give you the gist of what I experienced so that you understand the context, that is, what I think led up to this weirdness, and its aftermath, which is still with me.

Last Thursday I went to the hospital for my monthly infusion of Daratumumab. On that day I also took dexamethasone, Benadryl, lenalidomide, aspirin, and hydromorphone (HM), that is, my usual cocktail of meds. I also took some Senokot, to counteract the constipation that invariably accompanies taking HM. I’ll also take Dulcolax if I need it as things go on.

On Friday, the dex left me with the usual spurt of energy meaning that sleep does not come easily. I got up on Friday morning having had virtually no sleep after 2 AM, but the dex was still doing its thing. We had been invited by friends to their place for a get-together before dinner, around 5:30 PM. It was so good to be out visiting friends, but it was still fairly cold out and after a couple of hours I decided it was a good idea to get back home. I was chilled more than I thought. I climbed into bed almost immediately and covered myself with lots of blankets and quilts. My legs, however, were pretty sore. I’m used to my legs being sore, but this time they were inordinately so, and the soreness was accompanied by weakness, spasms, and tingling. The tingling is usually restricted to my feet and hands, but now my legs were also involved.

I took some extra HM shortly after going to bed (2 mg). It’s called breakthrough HM because it’s used as a supplement to the 3 mg slow release HM I take in the morning and the evening. The slow release just wasn’t doing it for me, and that’s expected to happen now and again; that’s why I was prescribed 2mg of HM to take if and when the pain gets too much. I still struggled with leg and back pain so a couple of hours later I took another breakthrough HM. At about 3 AM I took another HM. I tried to sleep without much luck.

Eventually, I tried to get up to pee. That’s when I realized that I had barely any control over my muscles, all of them! As I tried to get up I slowly slipped off my bed, which is pretty high off the ground, and found myself lying on the floor, essentially paralyzed. I didn’t fall off the bed, I slid off of it. My arms were useless and so were my legs. It’s not that I couldn’t feel them, I just couldn’t move them. Carolyn came to help me, but I’m a heavy guy and she’s light but strong. Finally, with the little help I could give her, she was able to pull me into the middle of the room. Then, she maneuvered an arm chair close to me and I was able, with a lot of her help, to pull myself into the chair. We were able, then, to get the chair close to the bed. I lurched back into bed and stayed there for virtually the whole day. I’m still feeling the effects of that episode of weird symptoms.

From my consultations with the docs, it doesn’t seem like my temporary ‘paralysis’ has anything to do with myeloma. They’re flummoxed. So, off I go to get a CT scan of my head to see if my brain is still in there. 😉

I’m posting this because I really want to know if I’m the only person who has ever experienced such a thing. That means that I’d very much appreciate it if you could let me know if you’ve ever had this experience or know of someone else who has. You can PM me on Facebook, or DM me on Twitter. Or, you can email me at rogalb@shaw.ca.

Damn, it’s dark, cold, and wet out there!

Myeloma and Pernicious Anemia: My Constant Companions

Pernicious Anemia

In January of this year I published a post about the connections between myeloma and pernicious anemia. In that post I misidentified pernicious anemia as a B12 deficiency. It’s not. Pernicious anemia is actually an autoimmune disease that produces antibodies to a protein called intrinsic factor that is produced in the gut and that is required to ‘extract’ B12 from food. It’s a devilishly difficult condition to diagnose. Low levels of B12 are obviously an important indicator, but there are other reasons that a person might have low B12 levels. Probably the best accessible article on pernicious anemia can be found on the Pernicious Anaemia Society’s website. It’s well worth reading.

Now, I have assumed for some time that I have pernicious anemia but I’m no longer certain. It turns out that 50% to 70% of people who have a B12 deficiency, which I definitely have, will have that deficiency caused by pernicious anemia. I have not been tested for intrinsic factor antibody, a test that would definitively confirm a diagnosis of pernicious anemia, so I don’t really know if I have it or not.

Whatever, I know for a fact that I have a B12 deficiency. In order to treat that deficiency I inject B12 (cobalamin) into my thigh every two weeks. However, because of my mixed record of injecting B12 over the past twenty-five years I may have what’s called  Autoimmune Metaplastic Atrophic Gastritis (AMAG). That just means that my B12 symptoms may never go away, even after my regular injections. Then again they may dissipate, but I have no confidence that that will happen.

An International study is now underway initiated by the Pernicious Anemia Society to try to understand the extent of the disease and to track the problems people have had with getting a proper diagnosis. It may be that we will get some answers, but I’m not holding my breath. At seventy-five years of age, I have a limited amount of breath left in me in any case so maybe I should hold on to some of my breath!

Myeloma

Yeah, well, myeloma. As I noted in my January post, the symptoms of myeloma and pernicious anemia overlap considerably. So, I have no idea what’s driving me nuts with peripheral neuropathy, numbness and tingling in my hands and feet, fuzzy brain, poor balance, weakness, especially in my legs, and bone pain, to name just a few of the symptoms I’m experiencing. It could be both the B12 issues and the myeloma that are teaming up to keep me in my place, and the chemotherapy is also no doubt contributing to my now radically re-assessed quality of life.

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So, that’s it. I’m old, I have a severe B12 deficiency that could be the result of pernicious anemia, and I have multiple myeloma, with its attendant chemotherapy.

As I lay in bed last night I harkened back to times in my life when I was still able to do things easily and effortlessly, things like canoeing, woodworking, building decks, garden structures, and a number of other physical things. I can still paint and draw, but with some difficulty. Writing is even getting to be an issue because I can barely feel the tips of my fingers on my left hand, my dominant hand.

It’s been difficult at times, not because of my physical abilities, but because of my attitude towards them. I’ve had challenges keeping the dark side away, the feeling that I can’t do things anymore like I used to, making me a lesser human being, somehow.

Carolyn and I both read the news and despair at the state of the world, but Carolyn seems to have a greater capacity than I do for keeping the dark side away and for maintaining a sense of perspective about the world. It’s true that the world is in a mess, but it’s always been in a mess if the press is to be believed. I have to keep reminding myself that the press, all of it, has a vested interest in propagating the dark side. That’s where the money is. Outrage and fear sells the goods. The bright side doesn’t.

That said, I don’t want to be captured by the dark side or the bright side. The world is a complex place. Life is finite and changes all the time. Mommy doesn’t have to change my diapers like she did seventy-three years ago, even if she were still alive. I don’t have to put a uniform on and go to elementary school. I never have to write a final exam or go on a job hunt ever again. Of course, I won’t experience the joy of the early days of fatherhood ever again either, of falling in love, nor of the thrill of discovering a wonderful, new camping spot.

I guess my point with all this rambling is that life is full of variety, both at the individual as well as at the socio-political level. Some things we call bad, some good. Those are judgment calls, which for us are adjudicated with reference to capitalist morality which itself is expressed in possessive individualism based on wealth and health. We look down on the poor and the unhealthy.

These judgments are not easy to counteract both at the individual and the political levels because they are so deeply rooted in our culture. They are so familiar to us that we consider them normal and reasonable. It’s easy to feel self-loathing for being poor or in ill-health. It’s almost expected of us. And those individual feelings are reinforced every day in a thousand ways by the vast majority of us as we compare ourselves to others, those with money or excellent health (mental and physical).

If I let myself I can easily be dragged onto the psychologically dark and barren landscape of blame and feelings of unworthiness. Enough of that now. I have a limited number of days, months, and years left to live. I cannot, I will not live them in fear and self-loathing.

Death is like a destination, one we have no choice in travelling towards. But, you know, some of the best trips I’ve taken have been at their finest and most exciting just before reaching our intended destination. Maybe that’s a good metaphor for the last bit of my life.

Such a Mess.

I must admit that I’m a bit depressed these days. A substantial contribution to my depression is the amount of caution I need to exercise every day in the face of the coronavirus COV-2 and the cancer that I still harbour in my bones. Even though I’m triple vaccinated, I still need to be very cautious lest I contract the virus in my compromised state. Picking up an infection, any kind of infection could be deadly for me. Carolyn is also immunocompromised because of arthritis meds she is on, so we are somewhat reclusive these days. Carolyn still does virtually all the shopping, but I do get out with her now and again. In my younger days, I was a moderately social guy. Not anymore. Among many other things, I miss having a beer at the CBC with friends. 

As far as myeloma is concerned, there seems to be just minute traces of it in my blood. Of course, I’m still on chemotherapy. Who knows what would happen if I suddenly went off chemo. I may need some dental work requiring an antibiotic. My local GP/Oncologist figures that I shouldn’t be on chemo and an antibiotic at the same time. He suggested that I think about going off chemo for a while, at least during the time I need for the dental work. He also suggested I talk to ‘my’ oncologist in Victoria about it. I had an appointment with an oncologist in Victoria this coming Monday, but he cancelled, according to his assistant, because he was called away unexpectedly. Great. I haven’t had a meeting with an oncologist in Victoria for months, and now who knows for how much longer. I haven’t had an appointment with the same oncologist in Victoria twice in a row. They are specialists, of course, so I don’t expect to have the same kind of relationship with them as with my GP, but still, I don’t know how continuity of care happens in this situation. I feel a little abandoned. 

What I find as distressing as anything as a person with cancer is the absence of predictability. Well, I guess I can always predict that I won’t be able to predict how things will go. I can usually predict that I’ll be going to the hospital every fourth Thursday of the month for an infusion of Daratumumab, but even that is a toss-up. It all depends on my bloodwork. If it’s good, then I go. If not, then I don’t go, and things change quickly. What I mean by the absence of predictability is more the idea that when I get up in the morning, I have no idea whether I’ll have any energy, will be lucid, or how much pain I’ll be in, and in which part of my body. Right now, the peripheral neuropathy in my left hand is bad, especially if I sleep on it in a particular way. As I write this, I’m feeling very tired and ‘dizzy’, even disoriented. I feel like I have a hangover. I don’t like it. I’ll go down for a nap soon. I’ll see if that helps. There’s no predicting. 

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Slip slidin’ away.

I know three people who have chosen MAID (Medical Assistance in Death). The reports from relatives (or from themselves) suggest that they went gently into the night under conditions of their own making. I know others who have either not had the time to set up MAID, or who, for whatever reason, chose to let things run their course and for whom the pain of dying was muted with the help of morphine or other pain killer.  After reading Barbara Ehrenreich, Brian Greene, Siddhartha Mukherjee, Atul Gawande, and Jason Fung, all authors I’ve discussed in this blog at times, it strikes me that slipping gracefully into death is not a fate most of us will share. I don’t know what the billions of people in the poorer parts of the world suffer as they approach death. I know that in some places where wars are still all too common, death by a bullet or a machete are a fate that await many people. Death by poverty is all too common. It’s true that death awaits us all, but the conditions of dying are not democratic. Considering all living things on this planet, dying is generally shunned. Yesterday, while shaving, I inadvertently disturbed a spider who was minding its own business in and around the vanity lights. It took off, scurrying like mad, wanting to live another day, I surmised. It did not want to die. 

As biological organisms we tend to cling to life for all it’s worth. Obviously, there are exceptions to this rule. Even for people who commit suicide, I suspect (with no hard evidence whatsoever) that it’s not life they are escaping, but unrelenting pain, physical and/or mental. I’m sure that they would gladly continue living if the pain would only go away. I think that’s true of people who choose MAID as well as those who commit suicide in any number of non-sanctioned ways. Of course, the people who I know chose MAID were older. As Barbara Ehrenreich wrote (somewhere, probably in Natural Causes) when she got to be seventy-five years old: “I’m old enough to die now.” I’ll be seventy-five next year, and I guess I’m old enough to die too, but I think I’ll endeavour to stay alive in 2022. 

Lassitude – An Addendum

So, on my last post I noted that I’d be going to the lab at the hospital this morning to get my blood tested in preparation for my Daratumumab infusion on Thursday. I told you I’d let you know how it went. Well, I texted the lab at 9 AM. We can get on a wait list if we text the lab. They text back when it’s our turn. I always do that to avoid sitting in the lab waiting room with a lot of sick people. We then immediately drove to the hospital. We got to the hospital at 9:40. I was 37th in line at that point. I waited in the car while Carolyn took Tilly for a walk. 

I got my blood taken at 10:40. Not as bad as it could have been, especially on a Monday morning. When I told the lab tech that I was quite disappointed that VIHA had closed all the satellite labs in the Valley, she said that if they had left them open, they might not be run off their feet at the hospital lab. But then we agreed that staffing was a problem. 

Getting my blood tested within ninety-six hours of my infusion is a must. They won’t proceed with the infusion if my blood shows any kind of wonkiness. In the last few months it’s been brilliant! Last month there was no sign at all of myeloma protein in my blood. Everything is going fine with me on that front. My chemotherapy is very effective and there is no trace of myeloma protein in my blood. 

I had a consult with my local GP/Oncologist about ten days ago. We discussed the possibility of my going off chemo for a short time, but I figured it would be best to wait until I spoke with an oncologist at the BC Cancer Agency next month to entertain such a course of action. I feel so fortunate that I have great care and my prognosis is excellent. Myeloma used to be a killer. It still is, but it’s not a quick killer. It takes its time now. There are some amazing chemo meds that account for the progress being made in the survivability of myeloma patients. The trope now is that we’ll more likely die with myeloma than because of it. Fair enough. Obviously, I want to live longer, but I’m not keen on following my father in the way he died. 

It’s clear that some of my current lassitude is caused by my chemo and pain meds. However, the fact that I’m almost seventy-five is also an important factor. As we were driving to the hospital for my consult with Dr. Bakshi, I happened to notice a cyclist pushing hard along Piercy Road on the way to Highway 19. He was maybe in his fifties. This scene reminded me of years gone by when I rode my bike on this same stretch of road. I’d get tired alright, but I had plenty of strength and endurance. I could easily ride forty or fifty kilometres back then. I still have my bike. It’s a good cruising bike, but I’m almost afraid to get on it because my balance is off, and that’s not good for bike riding. I may give it a shot again. We’ll see.

I guess what I’m saying is that each stage of life has its own characteristics. It’s a bit crazy to think that we should be able to do at seventy-five what we did easily at forty-five or fifty-five. Certainly, there are some people who can still engage at seventy-five in some impressive physical activity. I know some of them, but I’m definitively not one of them. As my GP noted too, having a nap in the afternoon at my age isn’t beyond the moral pale. Today, I didn’t nap in the afternoon. I went down to my shop instead. I had some energy. Better not to waste it. I’m hoping to sleep a little better tonight because of it, but there is a confounding variable in my sleep patterns. Her name is Princess Pretty Paws and last night she damned near drove me crazy. She started meowling at 2:30 or so and carried on for most of the rest of the night. She’s lucky to be alive. 😉

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.

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