Bits and pieces of this and that.

November 15th, 2022

Starring blankly out over the front yard a couple of days ago at our driveway that stretches about sixty metres (two hundred feet) to the road an image suddenly came to me of a road covered in red, yellow, and orange leaves much like our driveway is this morning. Unlike our driveway, however, it was clearly a one-way road and a dead-end to boot. I daydreamed about walking along this road, but as I walked, it became obvious that the end of the road was not clearly defined. It seemed to recede into a fog away from me with every step I took. 

So, my brain is being metaphorical on me, sending me covert messages about my future. 

We (Carolyn and I) had a meeting with a palliative care doctor a few days ago. I’ve been feeling abandoned by the oncologists that have overseen my case for the last many months. I guess I needed some assurance that I would get effective care from the palliative care team at the hospital here. I don’t mind going down a one-way, dead-end road, but I’d rather not go it alone if I don’t have to. 

It may be that abandoning radiation treatments has hastened my ultimate demise, but it couldn’t be for long. I remember vividly the spiking fevers I got after my last radiation treatment and the ridiculous stay in hospital while the ER doctors chased an infection that I don’t think was ever there. That doesn’t mean that it would happen again, but I’m loathed to take that chance. Myeloma is an infection, a growth of unwelcome protein in the blood that takes up space in my bone marrow and doesn’t prevent ‘good’ protein from doing its job. That’s what it is, an infection, and it will cause all kinds of effects including fevers. I just don’t need the treatment for myeloma to be worse than the disease itself. Now if I get a fever, I’ll know it’s because of the myeloma itself and not one of its treatments. 

And now we wait.

I’m not sure what we’re waiting for either. It may be a turn for the worse, meaning the reoccurrence of a nasty fever, which this time, won’t go away. Or it may be an attenuation of symptoms and a reprieve of sorts from the worse of the nastiness brought on by chemotherapy. Whatever. All I know for certain is that I don’t know. Well, there are things I do know for certain: I’m seventy-five, soon to be seventy-six. My maternal grandfather, Georges Leguerrier, died in 1975 at the age of seventy-eight. His wife, Julianna, my grandmother, died in 1989 at the age of 91. My father died at 95 years of age in 2007. My mother was 94 when she died in 2018. So, generally, my family is quite long-lived. It may be that I take after my maternal grandfather, Georges Leguerrier, who died at 78. I can’t imagine I’ll live as long as my other grandparents or my parents, for that matter. 

November 19th, 2022

It’s Saturday, 7:38 AM, and very cold, (-2˚C) at least for here. (Yesterday was even colder) But it’s crispy and dry too. The air is perfectly still. The house is warm and cozy. 

I’m feeling okay despite the increase in opioids I’m taking.* The pain in my legs seems to be attenuating. I walked to the bathroom without my cane this morning and it was not a problem. Now, I’m sitting in my recliner, and I don’t have any pain to speak of. It feels good for a change. I’ll walk down to the studio in a bit to put on some heat. I can’t let it get too cold or the paint freezes and becomes useless. Who knows, I may be able to use it sometime. 

It’s strange, but in my half-sleep this morning just before getting up, I flashed on me working on a painting that’s half finished in my studio. Twenty years ago, or even ten years ago, I wouldn’t have thought twice about going down to the studio to work on that painting and maybe a couple of others I have half finished. I may still be able to paint, maybe with watercolours for the most part, but only if I don’t have to stand at the easel. I think I can work that out. Still, I have to remember that what I was able to do without too much thinking involved ten years ago, I now have to seriously ponder. I may have the knowledge to do something, but I also need the stamina, and it’s the latter that is lacking in my life now. It’s simple really. For some time, I thought that knowledge was all that I needed. Then I realized through trial and error (much error) that no, I need to be able to sustain activity for some time if I want to get anything done. Getting older (and weaker), whether in good health or not will inevitably mean less energy and stamina. So, now, I don’t feel bad about napping in the afternoon, and maybe even in the morning if I’m feeling particularly sleepy. Napping is fine for people my age. Not all of us nap, but for those of us who do, we have to just accept it and relax about it. 

I could say the same thing about dying but dying and napping are obviously not the same. There is a certain finality in dying that is just not there in napping. 

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*Opioids contribute to pain relief, but they also can leave me sleepy, dizzy and cognitively dull. This morning I woke up without a lot of pain and fairly sharp (if I do say so myself). 

Waiting is Depressing

Well, it’s November 7th, 2022.

I’m not sure I’ll ever recover from the times I’ve spent in hospital over the past few months stewing in ERs with high fevers and infections all over the place. At least I’m home now and I can sleep as much as I need to without being plugged into an infusion pump. No more infusions for me!

Of course no more infusions means no more chemo means not even any remote hope of help with myeloma from chemo or radiation. Well, the chemo was killing me anyway so what was the point of that?

Last night at about 2 AM I stared out the window of my bedroom at the moon. If it wasn’t full it must have been very close to it. The bare tree branches in front of it produced a most pleasing atmospheric effect. Clouds at times partially covered it, but they moved surprisingly quickly too. If it isn’t overcast tonight I may try to take a photo or a video of it. [Ha! It was overcast this evening!]

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If I were to assess the current state of my mental health, and if I were honest about it, I’d have to confess that I’m somewhat depressed. I think it would be surprising if I weren’t depressed. Even bringing up the topic of depression is depressing. After all, how am I supposed to feel? I am facing death in the foreseeable future and the pain I experience every day as a result of myeloma is sometimes daunting. Lately, I’ve been provoked into taking more hydromorphone by a growing pain in my back brought on by chronic pain issues along with some new ones precipitated by a soft tissue growth in my back that will not go away, especially now that I’ve eschewed radiation treatments. I’m not ready for MAiD yet. I will know it when I am.

In an attempt to distract myself from my dire circumstances, I’ve been reading books about genetics, particularly Neanderthal genetics.

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It’s November 9th, 2022

It’s 8:30 AM. I’ve just had breakfast and I’ve taken my meds. I’ll probably fall asleep in short order, but that wouldn’t be the end of the world either. Carolyn will go out for a walk with her buddies this morning along with their dogs. Tilly loves her morning walks. It’s cold but sunny here right now. Later this trend will continue. It doesn’t matter to me a whole lot although it would be good to get out for a walk along the river sometime. Carolyn would walk. I would sit in the wheelchair and she would push me. I have no strength in my legs. At least the pain in my back is attenuating.

We saw my GP yesterday. It was a good discussion. We agreed that there was nothing left for me as far as treatments go. I will get all the pain relief I need and that’s important. I’m not one of those people who will suffer through pain. Oh, I was, but pain soon disabused me of that attitude. I will not face pain heroically. Piss on that.

I mentioned above that I’ve been reading books on Neanderthal genetics. The first one I read was by Svante Pääbo. He’s been doing research for decades not only on Neanderthals, but also on Denisovans and other kinds of ancient humans. Pääbo’s book is well-written and exhaustive of the process by which he and his team at the Max Planck Institute for Evolutionary Genetics in Leipzig, Germany came to unveil Neanderthal genetics. He won the 2022 Nobel Prize in Physiology or Medicine for his work. His book is autobiography to some extent. In it, he ‘confesses’ to being gay or at least bisexual. He has two children with scientist Linda Vigilant. Frankly, I care not at all about Pääbo’s sex life. I’m only interested in his scientific work (and making sure I type his name properly). It’s funny, though, how many of the science based books I’ve read lately do include biographical notes. It may be that editors think that readers want to see the human side of scientists. That may be so. Readers may feel for a scientist who loses a spouse to cancer or a parent to dementia. That may endear them to some readers. Not to me. It may be that editors suggested Pääbo include some biographical notes in his book. That’s fine if somewhat disingenuous. I see Pääbo as genuine. I read his book as well as some of his articles and I watched many videos of him online. He’s okay in my book.

I just finished another book on ancient humans and hominins. It’s by Tom Higham and it’s called The World Before Us. This book is good as far as content is concerned. It follows Pääbo’s fairly closely and that’s fine. The problem with this book is that it needs some proofreading. That may be a function of it being made into an e-Book for us Kindle readers. Frankly, I don’t know why it needs proofreading, but it does. It’s not cool to have sentences with verbs missing. Reading a book like this is not supposed to be an exercise in guesswork. Now, I’ve just started yet another book on the same topic. It’s by David Reich and is called Ancient DNA and the New Science of the Human Past. Reich worked with Pääbo on the Neanderthal project. He was part of the Neanderthal Genome Project Consortium. He was primarily involved in the computer applications related to the Neanderthal project. He’s an American, one of three who worked on the project peripherally. He was not directly involved in the Leipzig work. From what I’ve read so far, Reich has found a groove, an approach to the study of ancient humans that complements Pääbo’s book rather than trying to eclipse it.

It’s November 10th, 2022

It’s 8:35 in the morning. I’ve been working on this blog post for a few days now. That’s ridiculous. I usually write them in a day or even a morning if things are going well.

Part of my problem with writing at the moment may be the increase in opioids I’m taking which leave me less cognitively sharp than I like to be. It’s a toss-up. More opioids, less pain. Less opioids, more pain, but sharper brain-wise. Now, I’ve chosen more opioids, less pain.

Another reason for my writing lethargy may be that I’ve settled into a place where nothing much is happening: no hospital visits for treatments or lab work, no trips to Victoria, just days of sitting and sleeping. And waiting.

Waiting for signs of whatever, improvement or decline. It’s depressing.

Myeloma, Sex, and Dementia

October 30, 2022

I hope you’ll forgive me if I’m not my usual chipper self today. I was in the Hospital again for a few days starting on Tuesday morning the 25th. On Monday afternoon I got radiation treatment on my back and right femur. That evening and especially during the night, I developed a high fever and once again I ended up on the floor in our hotel room unable to get back into bed. Paramedics came and they got me back into bed. They had to come back later to take me to Royal Jubilee Hospital in an ambulance. That’s the fourth time I’ve ended up in Emerg with a high fever after a treatment for myeloma.

The radiation oncologist at the BC Cancer Centre assured us that the radiation treatment had nothing to do with the high fevers I got on Tuesday after the radiation treatment on Monday. I have no reason to doubt her, except that it’s hard to deny the pattern here. It seems that every time I get a treatment for myeloma my temperature spikes and I end up in Hospital getting massive doses of antibiotics and other meds. I can assure you, though, that it will not happen again because I will not get any more treatment for myeloma, not chemotherapy, not radiation. It’s just too hard on me. My gut gets squirrelly, unsettled is too weak a term for how my gut feels. It’s still messed up and it’s Sunday. I can only hope that it gets better. Hope is all I have left. [It is better -Tuesday]

October 31st, 2022

I don’t mean to gossip, but my stay at the hospital this past week was replete with drama. Emergency Departments these days often stand in for family physicians. People with minor ailments are stacked in waiting rooms while often more seriously ill or injured patients are made to hold up in ‘rooms’, (that is curtained off areas) that are tiny. It’s possible to hear everything that goes on in these ‘cubicles.’ When I was taken to the hospital by ambulance on Tuesday 4:30 AM or so I was immediately introduced to the maelstrom. After a short time I was wheeled into a room that is set up for two patients. Carolyn was with me. We could hear everything that was going on in the area centred on the nurses’ station.

Enter a screamer. Make that an old screamer. She is eight years older than me but assailed by dementia. We eventually learned that she had fallen and broken a femur. She must have been in a lot of pain and she made it very clear to everyone within earshot that she was highly distressed. Initially, she was wheeled into the maelstrom, then for some reason the staff moved her into the room I was in. She screamed “Help, help!” over and over again, even if there was a nurse in the room. Then she would yell “No, no, no, no, no!” This went on and on and on at well over 100 decibels. I am not blaming this poor woman. She was in pain and she has dementia. But, man, did she have a set of lungs too. Every once in a while we’d hear a patient yell from across the room: “Shut up! People are trying to get some sleep here!” That didn’t slow her down at all.

November 1st, 2022

Finally, they got me into a ward on the 8th Floor of the hospital. That happened sometime after 11 PM on Tuesday. At the North Island Hospital in the Comox Valley I ended up on the 3rd floor a couple of times, in the same room too. It’s a large room for one patient. In the Royal Jubilee Hospital in Victoria, I was wheeled into a room set up for three patients. When I arrived, it was already occupied with two patients, a young man probably in his twenties, and an older man. Not sure how old he was. During my stay there I didn’t talk to the other two patients in the room, not once. The older guy was very ill and demented. He screamed most of the time, often at the top of his lungs, much like the screamer in Emerg. The nurses told him on more than one occasion to be quiet and the care aides admonished him periodically to “be nice to us.” He was not nice at all. He swore at everybody and wondered aloud why people were in his bedroom. He was most unpleasant, but I can usually tolerate people in his situation.

What can I say about the kid in the third bed. He was young, he could move around, and often went to the bathroom. I’m not sure why he was in the hospital, but I know that he was visited periodically by someone working on mental health and addiction issues. On my last night there, two young women came to visit this guy. They arrived around 7:30. One of them left around 9. The second one didn’t leave until 1 AM. You can draw your own conclusions about what happened behind the curtain separating his part of the room from mine, but it brings to mind a certain Paul Simon song. I know, it’s unbelievable but it did happen. It’s a good thing I had earplugs, because I still detected the odd moan and groan through the curtains. The nurses must have known she was there, but nobody did anything about it. Interesting. Not something I expected to experience in a hospital. Always a first time I guess.

Some (Moderately) Good News for a Change

Yesterday late afternoon we had a short meeting with Dr. Nicol Macpherson, an oncologist at the BC Cancer Agency. As I expected it was a watershed moment in my myeloma journey.

Macpherson started by asking us to get him up to date. So, I laid out the disastrous weekend I experienced after my last Carfilzomib infusion on September 15th and suggested I was done with chemotherapy because it was all too toxic for me. Macpherson agreed. We talked briefly about a drug called selinexor that is being used for patients who are ‘quad- or penta-refractory’ meaning that they have had four or five previous treatment protocols that are completely ineffective, so that patients are not responding at all to treatment or are responding poorly. That’s me. We agreed that it was unwise for me to even consider selinexor as an option given my history with chemo meds, and especially given the fact that the BCCA doesn’t have the resources to fully support a high-risk myeloma patient like me with a need for very individualized and attentive care. In fact, all along my myeloma journey I’ve been treated like a regular myeloma patient when in fact I was always high-risk and subject to very severe adverse reactions to chemotherapy.

Macpherson also acknowledged that I was likely experiencing myeloma several years prior to my diagnosis, something that contributed to the restricted treatment options I now faced. If I had been diagnosed earlier, for instance, I may have qualified for an autonomous stem cell transplant. Not now, I’m too old. So, where do we go from here? As the cliché goes, only time will tell.

Discombobulated

So, I’m still discombobulated. It goes with the territory. It’s difficult to keep things ‘together’ at a time when the universe is conspiring to tear it all apart.

I wondered aloud in the interview with Macpherson as to what kind of myeloma I had and how aggressive it could get. I speculated that I had lambda light chain myeloma* but he didn’t agree with that. He noted that the rise in my lambda free light chains was not a significant factor in the course of my disease and that I should not be concerned about falling over dead in the next few days. In fact, he assured us that my prognosis was for a very gradual decline in my condition, that I would most definitely live to see my 76th birthday on January 4th, and live for a significant time afterwards. That’s the justification for the title of this blog post wherein I note that we have ‘moderately’ good news: I’m not in imminent danger of dropping dead. It will take time. He even hinted at the possibility that I may regain some quality of life since I won’t have chemotherapy to completely mess with me. We’ll see. I guess taking longer to die is good news.

Now, I’m scheduled for some radiation treatments in Victoria. I have five days of treatments on my plasmacytoma, and one on my right femur where I have a large lesion. The plasmacytoma on my left side close to my vertebral column has grown a lot since February. Actually it didn’t exist until February, so they figure it’s time to shrink it. Hence, the radiation. I’ve had radiation before, on my jaw. This time it will be much more extensive but I hope it does what it’s supposed to do, and that’s reduce pain. It’s technically a palliative radiation.

On a last note, as I wrote in my last post, anticipatory grief is real and can be devastating, more so for survivors than for the person who is dying. In this CNN segment, Anderson Cooper discusses anticipatory grief in relationship to the decline and death of his nanny. Check it out. It’s worth it. The best way to view this clip is to go to YouTube.

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*There are several types of myeloma. Light chain myelomas are rare. I don’t really understand the chemistry of light and heavy chains, so I don’t expect you to, but it’s clear from what Macpherson told us that I have fairly stable bloodwork. My 589 mg/L of light chains is not an issue, because my myeloma proteins are normal. So there’s that.

MAID and Aggressive Myeloma

So, things are moving along. To recap: I went into the hospital for my infusion of the chemo med Carfilzomib on September 15th. On the 15/16th during the night I didn’t sleep at all because I was in an altered state and shivering uncontrollably. In the morning, we called the Cancer Care Centre at the hospital, and they told Carolyn to take me to Emerg right away. It was a good thing she did because my kidney was shutting down. They kept me in the hospital for three days on an IV (lactated ringers) and a catheter, but you already know that. Fun and games. 

Now, I’ve decided no more chemo for me. It’s been three weeks. It will be some time before I know what the result of that decision will be, but I will not recover from myeloma. Last week I had a chat with a palliative care doctor. She just called me a few minutes ago to see how I was making out with a new prescription for dexamethasone. We also discussed some more imaging for my leg and side (for a plasmacytoma) in preparation for some radiation therapy in Victoria sometime in the future, who knows when. Just don’t wait too long. The palliative care team at the hospital has been so kind and helpful. 

The hospice staff has been wonderful too. They’ve laid out all the care possibilities to help as I get nearer to ‘the end’ as they put it. This afternoon Carolyn and I had a chat with a doctor that provides MAID services. I’m all set up for that. I don’t have a date or anything like that, but I do have all the paperwork done for when and if I decide it’s time. He was great. He’ll call me in six months to see how things are going if we don’t call him before that. At that point (April 2023) if I haven’t called for MAID, we will need to redo the forms. 

An aside: the weather has been sunny and dry. Warmish too. We really need rain, but this is quite pleasant. I’m sitting in the living room but with the door to the deck open. Such an agreeable late afternoon.

Saturday, October 8th, 2022

Before I forget, I want to note that I learned a new term yesterday talking to the MAID doctor: anticipatory grief: Anticipatory grief refers to the sorrow and other feelings you experience as you await an impending loss. It has some benefits: It may help you find closure, settle differences, or prepare yourself for the pain of letting go. This kind of grief can come with lots of other emotions, including anxiety, guilt, fear, and irritability.* There is no doubt that I am feeling anticipatory grief, and so is my family. Of course, my grief is for the end of my life. For my family, the grief will extend after my death but in a different form.

It’s disconcerting to be so unsure of the future. We have no idea what the estimated time of death is. We’ll discuss that with the oncologist this Wednesday. He may have some insights by looking at my bloodwork. The most concerning number, although there are a few, is the rise in my lambda Free Light Chains. Now that marker and its number won’t mean anything to you, but what it describes is the amount of myeloma protein in my blood. The reference (normal) range for this indicator is 5.7 mg/L – 26.3 mg/L. My blood as of three days ago is 589 mg/L. On December 13, 2021, it was 11.7. Then it went up to 174.2 on June 27, 2022. Since, it has gradually made it up to 589 mg/L. It can’t go much higher without damaging my kidney. 

In fact, my kidney is already compromised to some extent but it’s still hanging in there. I would speculate on my survivability now, but I think I’ll wait until we have a chat with my oncologist on Wednesday. I know that my type of myeloma is particularly aggressive, so we’ll see. 

Strange as it may seem, if you came for a visit today, you’d probably say: “Hey, you look good!” I would respond: “Looks can be deceiving!” The disease I carry is all on the inside. There isn’t a lot of evidence of it on my body. My insides are scary though. Good thing you haven’t got x-ray vision like Superman, otherwise you’d see the mess in there. 

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*From: https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855

One Day at a Time.

Who knows how much time I may have left to live. A week, a month, a year, two years, it’s all the same to me because after I’m dead, I won’t be around to regret or celebrate anything that happened to me while I was alive, including dying.

I had my last chemo treatment on September 15th. That’s it as far as chemo goes for me. On the 16th I had to go to the ER to reverse the damage to my body brought on by the chemo meds I took on the 15th. I wrote about my weekend from hell on my last blog post. I don’t need to go over it again. Now, I’m hoping that the damage caused by the chemo meds can be reversed sufficiently so that I can have a modicum of a life back. Frankly, I don’t hold out a lot of hope, but who knows? There are some hopeful signs.

Today is September 30th, 2022.

So, I’m only two weeks without chemo meds, but it seems that I already have more energy than I had while I was on chemo. I’ve had to bump up my dose of hydromorphone, but I’m not sure if that will have to continue into the future. The hydromorphone is essential for dealing with the pain I feel in my thoracic region. That pain originates partly from the surgery I had in 2002 to remove my left kidney, but the soft tissue mass that’s invading my back and left side may very well be contributing as well. I don’t know. All I know is that I experience a low level throbbing pain all the time emanating from there and every once in a while I get a pain spike that is intense to say the least. I’m no masochist, so I take pain meds.

Because I’m not on chemo anymore, it’s unlikely the BC Cancer Agency will be concerned with my blood work. But, I’m concerned with it! It’s true that my symptoms should tell us how I’m doing and possibly give us some indication of how much time I have left to live, but blood tests are much more definitive and might give us a heads-up on how my kidney is doing, and how much crap I have in my blood. My GP doesn’t seem too keen on blood work either. Oh well, we’ll see about that.

I guess my biggest concern now is the uncertainty around how long I might live. In a sense it’s not a big concern because I should know when I’m on my last legs, but I may not. At the end I may decline quickly, especially if my kidney packs it in, but I may find that my last few days stretch into weeks or months. Whatever happens, because of the uncertainty, it doesn’t make a lot of sense for me to plan ahead, except in a general sense, for MAID for example. So, I live one day at a time. I get up in the morning and expect that I’ll still be alive in the evening when it’s time to go to bed. I watch news programs on YouTube, but I’m not invested in them at all. It seems as though the world is coming apart at the seams, but all the seeming chaos is moot as I face my own dying.

I can’t believe it’s the end of September. We’re moving into the Fall. The big maple in the front of the house is just starting to turn. The leaves change from green to a pale pink on the underside and bright red on the top. They fall almost in unison and cover the ground with a carpet of pink and red. There is dying in this process, but not death, not yet. The tree is preparing for its winter sleep, and will grow a fresh crop of bright green leaves come March and April. Death is in its future but it’s not for now.

The sword ferns are a different story. They have spores that are spring mounted on the undersides of the ‘leaves’ and that are flung out in a desperate search for a bit of fertile ground to sprout and grow. Chances are that none of the millions of spores will find a propitious bit of ground to grow into a new fern. Not to worry though because the fern itself will sprout new growth come Spring and just carry on. The ‘old’ leaves will turn brown and be displaced by the new leaves. They will create nutrients for the plant as it carries on. There is dying here, but not death, not yet. Death will come much later when the plant itself has no means of recreating itself, when it is exhausted and when the ground that is its home is no longer capable of sustaining it.

We have what’s left of a cascara tree in our yard, about six metres from the south corner of the house. It was a beautiful tree with a sculptural quality and a large canopy when we moved here in 2002. The tree itself was probably ten metres tall. We figured it had been growing on the property for forty years. Then one day it just up and died. The leaves all fell and the bark peeled off in strips. Its skeleton still stands. We hang Christmas decorations on it now. It lost its leaves every year like all the other deciduous trees on the property only to come back strong and vibrant every Spring, until that sad day a few years ago when it died.

Plants aren’t afraid of death and dying. They don’t feel fear. Yes, some people have anthropomorphized plants and have attributed to them human like feelings and motivations. That’s just plain silly in my mind.

Truth is, no matter who or what we are, we die. Simple. But like most animals we fear dying. Trees and plants in general have a different relationship with dying and death than animals do. They cannot flee from threats to their lives. They die every Fall only to be revived in the Spring, but even they ultimately meet their end when they reach the limits to growth. It could be argued that we follow the same trajectory except that we can successfully flee from threats to our lives, at least to some extent.

To me, cancer in old age is natural, and part of the deterioration that many organisms experience in the final stages of life. I love my life, but it must end. My body has decided that its exit from life will be via cancer. How can I argue with that? I tried to argue with it by using chemotherapy, but unsuccessfully. Now, it will countenance no significant opposition. Such is life.

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A Time to Die?

Well, howdy there internet people, it’s me again. Visited my local GP/oncologist this morning. He showed us images of the growth that is happening alongside the left side of my spine. I think it’s trying to replace the kidney that I lost in 2002. It’s big enough. Just kidding, of course. The growth is pretty impressive, let me tell you. I’m not feeling any ill effects from it at the moment because it hasn’t gotten into my spine. If it had, I’d be paralyzed. It is large, however, and nothing to sneeze at. Probably not immediately life threatening, but I have enough other issues to think about that are threatening my life, not the least of which is my age.

I’m feeling very strange at the moment. I am still sentient from what I can tell, although I’ll leave it up to others to confirm. Sentient or not, I’m close to death. From what I’ve read about Medical Assistance in Dying (MAID) people are often sentient until the last minute. Maybe I can shoot for that although being zonked out on morphine has its appeal too as I slip off into death.

My local GP/oncologist is in contact with the oncologist in Victoria at the BC Cancer Agency who looks after my file, and he (Macpherson in Victoria) doesn’t support the idea of my getting another shot with another chemo protocol. I’m done as far as he’s concerned. He expects more chemo would just be futile and would not enhance my life chances a whole lot. I will know the results of my latest bloodwork late next week and that will help me decide as to whether or not I push for a second opinion and for another chemo protocol. Whatever happens, as Carolyn points out, even a new protocol would likely give me just another nine months of life at best, so what’s the point?

It may be time for me to accept the increasingly obvious fact that my life is done. Well, I may have a few more months to live, but not years, certainly not years. I don’t know, but going off chemo may give me a few months of relief from side effects. That would be nice. Already, I’m starting to feel my lips again. Lips I couldn’t feel, constant sore eyes, and plugged ears were Daratumumab/lenalidomide side effects. Since I stopped infusing Dara things have settled down. Carfilzomib has its own issues, but so far I have been able to deal with them. Whatever happens, I could still take hydromorphone for pain, and maybe even increase my dosage. I mean, what the hell do I need a brain for anyway? [Well, maybe for writing a few more blog posts!]

Then, when the time comes, I just give the Hospice Society a call. I may opt to die in a Hospice bed, but I may decide to die at home, although I don’t thing I want to put my family through that. Caregiving is tough enough as it is. It’s true that watching me die might be okay with them. I don’t know. We’ll have to discuss it. MAID is definitely an option. We have discussed that.

I, along with many of my siblings and relatives, sat around and watched my mother die in her bed at The Dufferin in 2018, the care home in Coquitlam she lived in for many years with my father before he died in 2007. She had dementia quite badly for the last few years of her life, and as she lay there dying she had no idea about anything, which is consistent with the last 25 years of her life. The nurses just kept pumping morphine into her veins. That kept her quiet. I suppose I could tolerate an ending like that, but I don’t have dementia. I would probably be conscious and sentient until the end. That’s fine as long as I got the morphine too. I’m not a big fan of pain.

I told my local GP/oncologist that I may go for a second opinion. I may. I may not. Probably not. It all depends on how I come to accept my end times. I find it hard to even think about death and dying. It doesn’t come easily to my imagination. Oh, every once in a while I lay in bed just before falling asleep in the evening and I think “What the heck? When it’s done, it will be done. No regrets.” Then, I get scared. I imagine myself in a cardboard box on my way to the crematorium on the hill. That’s fine, but I need to know that I’m really dead before that happens. I’m not keen on feeling fire on my skin. Of course, I’m being silly. I will definitely be dead by then. My box is on a conveyor belt. There are a couple of bodies ahead of me laid out in fancy coffins. They’ll burn real good! I’ll have to wait to get turned into ash powder. But it will happen. Later, someone will give my family a package of ashes that will have been me. I don’t care what they do with it, but I hear that the family has a cemetery plot in Vancouver. My wonderful niece arranged that. So, that’s it.

Goodbye life.

PS: I’ll write my obituary sometime. Not just yet. You’ll have to wait for it a while longer.

Myeloma: a Killer by Degree

[I wrote this post in May 2022, not that long ago. I reread it and I think it bears reposting. I keep getting bad news on the myeloma front. I had an MRI last Sunday and it showed a growth, a tumour if you like, growing on my lumbar spine and extending upwards to the left side of my thoracic area half way up my back. It’s a fairly new thing, and is ten centimetres long, five wide, and seven thick. So far I haven’t felt any ill effects from it except that my legs are beginning to feel slightly numb. That’s not good, and just adds to the peripheral neuropathy that already leaves my feet in a constant state of pain, pins and needles, and spasms. At least it looks like I’ll be continuing on my carfilzomib protocol into September.]

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 [again] 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.

Carfilzomib and Buttle Lake

Wednesday, August 17th, 2022 – 2:30 PM

Just got back from the hospital for the first infusion of carfilzomib for the second cycle of this protocol. It went well, but as usual, I’m dexed out. Given this was my second cycle I didn’t have to stay after my infusion for an hour of observation. I had to go to the lab yesterday for bloodwork and the results were available today for us via MyHealth. Things seem to be going moderately well from the looks of my bloodwork. I have some reduction in my paraproteins (not that you should know what that means) which is good news but my kappa free light chains are going up. That’s not good.

However, we did a fair bit of reading about carfilzomib and one of the nasty side effects of that drug is renal toxicity. Given that I have only one kidney, that’s not great news. We just have to hope for the best.

As I said, I had to go to the lab yesterday for tests. What I didn’t say is that we spent the last three days at Buttle Lake in Strathcona Park for a bit of camping with the family. Yesterday, we had to race back to Courtenay to get on the lab waitlist. Around noon I started out at 29th on the list as we came into Campbell River but when we got to the hospital in Comox an hour later, I was down to 10th place which is quite acceptable. I didn’t have to wait too long to get my blood extracted.

Sunday, August 14th, 2022 –

We packed up yesterday and this morning. We were in four vehicles. I rode shotgun in the truck. It hauled most of the food, the banana boats and me. I won’t identify individual family members here. Suffice to say that there were enough of us to pilot four vehicles along with some passengers. We’ve been camping at Ralph River campground on Buttle Lake for upwards of thirty years. We’ve had some wonderful times on that lake, and particularly at that campground. It was such a pleasure getting back there. Frankly, I doubted that would ever happen.

From 2019 a few months before my diagnosis

I already posted this photo on this site, but I decided to post it again because it tells a story of how we had such great fun improvising and adapting the canoe with outriggers, a sail and electric motor. We’ve had the canoe for over forty years. We’ve had such great times with this canoe for decades! This boat didn’t come with us on this trip. I’m not ruling out the possibility that it will again feel the waters of this lake on its keel. Chances aren’t great, but we’ll see.

When the picture above was taken, so was the picture below.

Buttle Lake at Ralph River

You can see that these stumps are a predominant feature in the landscape. Who knows why the loggers left them (probably no need or profit in removing them) but they did and I took the opportunity to draw and paint them*. I can’t remember exactly when I drew them, maybe it was 2014, but that doesn’t matter.

You can see the water surrounding the stumps. They are maybe a half a kilometre from the campground and there are connecting pathways. Below is a photo of one of those pathways, the one they built for the movie See with Jason Momoa. That pathway and surrounding terrain used to be clear from the campground down to the stumps with a gravel base and not a lot of vegetation as you get closer to the lake. Now, as you can see, it’s flooded and there’s lots of vegetation, but the rocks that define it are still clearly visible.

The lake must be at least three metres above what it was when I took the above picture in 2019. The stumps are nowhere to be seen. They are all underwater. What a dramatic change! What a metaphor for life! Things can change so quickly and dramatically.

Main pathway from lake to campground.

Monday, August 15th, 2022 – 6:55 AM

I was awake for some time before 6:55, but that’s when I got up. The sky was pure blue. The previous evening it was overcast and spit a little rain. This morning was beautiful. Our campsite was open to the lake but the path to the lake was impassably muddy and crawling with Western toadlets to boot. We really had to go around to Jason’s pathway to get to the lake. I set up a chair in our campsite (called a gravity chair)facing the lake. For some time I watched the sun hit Mount Philips across the lake. Eventually, the shadow cast by the mountains behind us on Mount Philips reached the lake, but by then I was busy doing other things and I got distracted by this as I pushed myself vertical in my chair:

Cedar Boughs.

I actually took this picture later in the day after the sky had clouded over. I stared at this sight for a long time. There is an odd quasi-symmetry to the branches and needles. I contemplated drawing this, but I just couldn’t garner enough energy to do it. Instead, I took pictures and stared. I found looking at these boughs soothing. My pain dissolved. I relaxed completely. Such a great feeling…at least for a time!

I can’t thank my family enough for making it possible for me to get back to this lake and this campground. I’m an old man now. Many of the things we did for years like camping and messing around in boats are just not possible for me anymore. Maybe if it were only a question of age, but it’s not. Myeloma and chemo complicate matters immeasurably. Still, when I was at the lake I could much more easily recall so many pleasant experiences we had there. I love that place. It’s so much better to feel love for this place and for my family than to dwell on my health or lack of it.

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*See my art blog for images of the Buttle Lake stumps in ink and pencil: https://rogeralbert.blogspot.com/p/drawings.html

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.