cancer

And the beat goes on…

~ Roger JG Albert ~ 2 Comments

Yes, it does. Sonny and Cher knew what they were singing about what seems like a lifetime ago now. I don’t know why, but the fact that Sonny died slammed up against a tree on a ski slope in Lake Tahoe the day after my birthday (January 5th) 1998 has my current attention. I guess it’s because his is a good example of a quick, unpredictable, death. Sonny had no time to sweat it. Death just happened to Sonny. No time to ruminate about it. Go Sonny go! I must confess that in some ways I envy Sonny his quick release.

Moving on, in my last post I told you that there was no longer any trace of multiple myeloma in my blood. I’m happy about that, but I must attach a disclaimer to that fact. The multiple myeloma will return. As I’ve repeated over and over, multiple myeloma is incurable although it is treatable. My oncologists have suggested to me that myeloma is a lot like type 2 diabetes in the way that it is treated by the medical profession. 

So, I can reasonably expect to make it to my eightieth birthday, although, frankly, longevity is not the holy grail here. And, of course, the six years from now until my eightieth year are not years owed to me. They are purely hypothetical time, years I might live, and years I might not. Moreover, as far as I know, after I’m dead, I won’t be able to regret anything about my life, how I lived it and for how long. “I” will not be so it’s ridiculous to speculate on what “I” might do after “I” am no longer. After I’m dead, “I” enter my immortality stage. 

I was not going to explore the whole business of mortality in this post, but I changed my mind. Bear with me. I just want to introduce here some ideas that I’ll come back to it in an upcoming post. These are not simple concepts to grasp, but, if you make the effort, it may help you understand life and death as I see them. So, here we go:

Humans are mortal, but only as long as we’re alive. To be blunt about it, it’s only when we are alive that we can die. Once we die, we are no longer mortal, we now become immortal, that is, we no longer change, and we consist only of what others remember of us. Our lives are complete. Simply put, immortal means not mortal. Well, once we’re dead, we are no longer mortal, by definition. We’ve arrived! We’ve become immortal! That doesn’t mean that we will live on forever in some form or other as defined by most of the religions that exist on this planet. No. “We” exist, after our deaths, only in the minds of others. 

My definition of immortality is clearly not the one espoused by most religions. The Abrahamic religions, for example, get around the problem of death by coming up with the idea of the soul. According to Christianity, the soul is the immortal aspect of human existence and is continuous before and after death. The body may return to the planetary store of compounds, atoms, and molecules, but the soul, well, the soul lives on in some kind of ill-defined relationship with a deity, “God” in the case of Christianity.  My definition of immortality does not acknowledge the bicameral nature of the person as consisting of body and soul. I see no evidence for the existence of a soul. Therefore, it does not ‘fit’ into any explanatory scheme I concoct. 

I could go on and on about death and dying as most of you well know, and as I promised I’ll get back to it in a subsequent post, but for now I’ll drop the philosophizing about immortality, death and dying and take up an issue that I’m currently faced with given the fact that we’ve tamed my myeloma. 

A few months ago, while I was still struggling with active myeloma, the pain in my bones was severe, and it was compounded by peripheral neuropathic pain. At that time a priority for me was pain relief. It still is to a large extent, but now, my priority is to see how far I can go in weaning myself off pain medications that were crucial for me for the time I was under the full effect of myeloma.  Now, I’m on two prescription pain medications and I take acetaminophen when I think of it. I was on three prescription pain meds until just recently, but I quit one of the medications cold turkey. Along with several annoying side effects, one of the more insidious side effects of that medication is dry mouth. My sense of taste was affected. I could barely taste some of my favourite foods and some I could not taste at all. I was anxious to try life without this med and as it turns out I’m quite confident that I’ll be fine without it. 

That leaves me with two pain meds. Gabapentin is a med I take for neuropathic pain. I’m currently cutting back on it to see how it goes. I’m not going cold turkey on Gabapentin, but I am determined to eliminate it from my pantheon of drugs. Hydromorphone is the drug that is the backbone of my pain treatment. I take it in slow-release form twice a day to deal with the daily predictable pain I get from myeloma’s excavations of my femurs as well as from sciatica and degenerative disk disease. I can also take hydromorphone in what’s called a pain breakthrough mode. That is, if the slow-release form of hydromorphone isn’t doing the job, I can take a more fast-acting form of the drug in any amount I feel is needed. I have taken breakthrough hydromorphone, but only sporadically, and as a last resort. I take as little of this drug that I feel will do the job. Taking more than a few milligrams of breakthrough hydromorphone leaves me hallucinating, not something I enjoy.  

The problem is that I’m seventy-four and at my age, the degenerative process is well under way. There’s no stopping it, and it’s not satisfied until it’s done. At my age, just about everybody has back pain and sciatica. These are conditions endemic to the species. It serves us right to have evolved from an arboreal species to one that is bipedal and an upright walker. Monkeys don’t have back problems. 

So, my challenge at the moment is to reduce my intake of pain meds to the point where I get pain relief without experiencing all the negative side effects of the various meds involved. So far so good. We’ll see how it goes.

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I’m writing this post on one of the hottest days of the year so far with tomorrow promising to be even hotter yet. Thankfully we have air conditioning, so the house is staying at a very acceptable 24.5˚C. Outside today, according to our weather station, the temperature has topped out at around 40˚C. Tomorrow, the prognosticators have promised us temperatures of 40˚C at mid-afternoon, so the beat goes on. 

I’m not complaining about the weather. The weather is what it is. It doesn’t respond to our needs, but instead requires that we respond to it if we’re not happy with it. Good luck with that. On to the next post now. Maybe I’ll take less time to get it out than it took me to get this one out. No promises. 

Check out this article Carolyn found for me. It’s a great discussion of chronic pain:

https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other

#84. One Day at a Time

~ Roger JG Albert ~ 4 Comments

Spring is a magical time for me. I never tire of looking out the windows at the many flowers, ferns, plants and trees as they come out in response to the warmth in the soil and other encouraging signs of Spring. On most days, the sun is there to warm my face. When it rains, the droplets glisten on the leaves as the hummingbirds dart back and forth between the feeder and their favourite perch. The wisteria is blossoming and will soon be in full flower, providing a shade canopy for the deck in anticipation of those lazy, hazy days of summer.

Wisteria

Occasionally I will take a slow stroll through the gardens aided by my cane and revel in the glorious, delicious scents that emanate from the many flowers that are now in full bloom. Right now the crab-apple tree with its ten or twelve foot canopy is showing off its clusters of blossoms and establishing its perfumed dominance as it spreads out next to the driveway. In the vegetable garden, without the benefit of a sweet scent, the rhubarb has already provided us with a delicious desert and promises more. The garlic is as hardy as ever this year and will supply us with all that we could possibly want for the coming year.

  • Crab-apple blossoms
  • Crab-apple tree

I seem to be feeling better as time goes by. Springtime has that effect on me. Of course, I’m 74 and I have the emperor of all maladies as well as various and sundry ailments related to my vertebrae competing to see which of them can make my life most miserable. All of them can and do contribute to the waves of pain that frequently sweep over me, and that inspire me to reach for the opiates and the acetaminophen. That said, I expect improvement in my situation in the coming weeks as I move into a new phase of chemotherapy having Daratumumab infusions once a month but staying the course with lenalidomide and dexamethasone. Of course, because of the nature of myeloma I can only think in the short term, five years tops. I have another handicap that makes my situation somewhat different than others and that’s the fact that I have only one kidney. I lost my left kidney to kidney cell cancer in 2002. The pain in my left side due to the nephrectomy (kidney removal) has not let me forget it either. My left side is a constant source of pain.

I should say that cancer has not been my only tormentor. In my youth I lost a lumbar disk to a sawmill accident leaving my lower back especially vulnerable to re-injury. Given all the physical ailments and challenges I’ve faced over my lifetime, I’ve managed to stay physically active running and cycling as well as working in my shop and studio. Now, the limitations I face are those of old age and cancer. I just have to be super vigilant and not do stupid things, things that could leave me physically incapacitated.

Back to my chemo life, I checked my numbers earlier this afternoon. That means that I consulted MyHealth, an online access to lab results, imaging, appointments, etc., to see what all the blood tests I get periodically can tell me about my state of health. I have results as of May 4th, 2021. Looking at the results you’d have to conclude that you were looking at the blood serum of a very healthy person of my age. It seems that the chemo meds that I’m on now are doing the trick, that is they are suppressing my myeloma down to levels seen in healthy individuals.

Too bad my blood serum won’t maintain that level of normality for any length of time. My myeloma is kept at bay as long as I keep taking my chemo meds. Stop taking my meds and the myeloma wants to kill, kill, kill. The amount of time between when I stop taking my meds and the resurgence of the disease can vary a lot. The last time I stopped taking my chemo meds it was only a matter of a couple of months before my myeloma was back and as active as ever.

With this new chemo regimen it looks like I may get a better result than I got last time. It also looks like I’ll have a long-term relationship with some of my chemo meds. I’m not sure which ones at the moment.

The way these things work, chemo meds only work for a certain length of time after which a new cocktail of chemo meds needs to replace the meds that are no longer working. It looks like the Daratumumab/lenalidomide/dexamethasone triumvirate is going to give me a longer period of remission than I had the last time I went off chemo meds. I’m hoping for years of remission but that’s yet to be determined. If I could get a modicum of mobility as well as ability to use shop tools and studio materials even for a few months I’d be happy. So far my Dara/Lena/Dex trio is doing the trick. I hope it continues that way and buys me some more time.

All I can do is take it one day at a time.

A Tribute to Wayne Bradley (1949-2021).

~ Roger JG Albert

Wayne Bradley passed away on April 3rd of this year. He was informed by his GP in mid-March, after a consultation and imaging that he had a growth on his pancreas and nodules on his liver. Pancreatic cancer metastasized to the liver is absolutely unforgiving especially with a late diagnosis. It has the reputation of being a cancer that kills quickly. In Wayne’s case there was barely three weeks between diagnosis and his death at the hospice in Comox.

Wayne was two years and a day younger than me. We were both involved in social activism of one sort or another. You may have seen Wayne with Janet (his wife) selling coffee and chocolates at various events in the Valley. Carolyn and I were quiz masters at the Cumberland Forest Society’s trivia nights some time ago now, on one occasion, Wayne and Janet were there at the back of the hall with a table set up to sell World Community products. They only did the coffee and choc sales once at Trivia but had those sales regularly at Miners’ Memorial events such as Songs of the Workers.

The last time I spoke with Wayne was on our deck on the occasion of a Home and Garden Show in 2019. This was Carolyn’s last appearance in the Cumberland Forest Society Home and Garden Show. We sat around drinking tea and chatting. I was not doing well at that time and a diagnosis of multiple myeloma in October provided the reason for my ill health. I recall that Wayne was very keen to talk about electric vehicles. We were definitely interested in electric vehicles but were cautious about making that kind of investment one of the reasons being that the property was not wired for it. It is now, but we’ve moved on because of my cancer diagnosis and other reasons. 

My type of bone marrow cancer leaves me completely exhausted and dizzy. That, on top of the pandemic, made it so that we were pretty much in isolation. So the summer of 2019 was the last time we saw Wayne and Janet. We (our son-in-law) bought tickets to the World Community Film Festival this past February but that was an online event. 

Wayne suffered from abdominal, back pain and utter exhaustion in the last weeks of his life. That is common with pancreatic cancer, but Janet told me that strokes are also common with this disease. I had no idea. Wayne suffered a debilitating stroke on March 30th, and he was gone in just a few days.

Death in these circumstances is expected but still shocks. We all die, but the circumstances will have something to do with how well the family is prepared for a close relative dying. My type of cancer is treatable with chemotherapy and can go on for years, plenty of time to prepare for dying but when I die I’m sure it will still be a shocker for the family. Unlike myeloma, pancreatic cancer doesn’t generally allow for years of grieving. In a way that may be a blessing. 

Wayne was a great guy. He was committed to his community and worked tirelessly for the good of his community but also for communities far and wide, those involved in the coffee and chocolate trade. Janet was Wayne’s partner at World Community but both were involved in other initiatives over the years. They were seldom far from the action. 

Hearing of Wayne’s illness and death was certainly a shock. Cancer is often very difficult to diagnose and once diagnosed it’s often too late to do anything about it. According to Johns Hopkins Hospital, eighty percent of pancreatic cancer patients are diagnosed at Stage IV, when the prognosis is bleak. 

Wayne will be sorely missed by family, friends, colleagues, and acquaintances. He was a man of integrity, strength and determination. He was a good man.

#74. Up Yours 2020!

~ Roger JG Albert ~ 7 Comments

I was thinking of writing a timely, thoughtful blog post for my last one of the year, then the pain around my jaw went a long way to discouraging that. Yes, I feel that there is something quite wrong with my jaw, a wrongness likely associated with myeloma.

I went to see my dentist a while before Christmas because I thought the pain in my jaw and the increasing numbness there was tooth related, but it turned out on closer inspection by a specialist that the lesion there is probably myeloma related. Such a ducky way of ending 2020.

Interesting! This is my seventy-fourth post on my experience with myeloma and it turns out that Monday is my seventy-fourth birthday. Coincidence? Of course. There’s no way I could engineer my life that closely.

I suppose I’m happy that I made it to my seventy-fourth birthday although with everything that’s going on these days, it’s hard for me to get too celebratory around my birthday.

Frankly, I’m much more concerned with what happens on January 5th, the day after my birthday. That’s when I get my blood tested for the presence of myeloma protein and other noxious nasties whose only goal in life is to kill me. I was found to be in remission when my blood was last tested three months ago. Now, we go at it again. We wait and see what the verdict is. I must say that this is getting somewhat irksome.

Oh well. So far this post has been about me and my problems. No sociology and no profundity. Just a little whining and sadness. I think I’ve earned it. But it does stop here.

BTW…I hope for your sakes that 2021 is at least twice as good as 2020.

59 Perturbatious Times (and wee bugs)

~ Roger JG Albert ~ 4 Comments

So, the last three weeks since my last post have been momentous (for me) because, as I’ve noted before, I was faced with the devil’s choice of carrying on with the chemotherapy that was sapping my mobility, or of putting my chemo into abeyance. It’s been very stressful for me and for my family, especially for Carolyn.

Before I get into my decision and the reasons for it, I just want to say that I’ve had really incredible support from the oncology staff at the hospital, as well as from the palliative care staff, especially Dr. Marie-Clare Hopwood and Adele, one of the nurses at the Centre. Pain is a huge issue and a major hindrance for healing. The challenge for palliative care staff is to manage pain in the face of severe illness.

That’s where I come in. I provide the pain, they provide the relief. Ideally, at least.

Well, I’m pleased to say that in some ways, with certain aspects of my pain, I’m getting some relief with the helpful prescription writing skills that Dr. Hopwood brings to the table. It turns out (and I’ve probably already told you this) that opiates, including hydromorphone, are not much good at attenuating neuropathic pain, that is pain that originates in the nervous system. Most of my pain over the past couple of months has been dominated by neuropathic pain in my back and legs. It turns out the neural systems in my back and legs aren’t doing a great job of controlling the large muscles of my lower body. Fact is, the muscles in my legs dance constantly with fasciculations.* You may experience the odd fasciculation, but my legs are alive with them to the point where my legs have less than ideal control coming from the nerves that are supposed to make them move without us thinking about it, I lose my balance constantly, and use two canes to walk.

How often do you get a house call from a doctor?

Well, Dr. Hopwood and Adele came over to the house a few days ago for a consultation. We all sat on the deck at a proper distance apart and Adele and Dr. Hopwood wore face masks. We talked for quite some time before Dr. Hopwood arrived at a strategy to help with the pain in my back and legs. I won’t get into details, but it doesn’t involve more opiates. I’ve been on the regime that Dr. Hopwood recommended for almost a week now and it’s going well so far. I have other pain issues, but they have to be resolved in other ways. More on that later.

This past Wednesday during a regular consultation with my GP oncologist, Dr. Bakshi, I put it to him that I felt my mobility was being severely compromised and that my quality of life was being significantly eroded, especially in the last two months or so. For instance, over the past couple of months my legs have given way on me four times and I’ve found myself on the ground with no ability to get up. Thankfully, there was always somebody with me to help me get back up.

I told him I was seriously considering abandoning my current course of chemo. I was gratified to find that he was in complete sympathy with me. He said that I had successfully completed more than 80% of my suggested nine cycles of chemotherapy which would have taken me to October 6th. So, I made the decision to put my chemo into abeyance. What does that mean?

Well, it means that I’m off chemo for the foreseeable future. My last blood work shows that my blood is normal with very little paraprotein, good liver and kidney function. Now we just have to wait to see when the myeloma will again haunt my bones, veins, and arteries, because it surely will. It’s just a matter of time. Of course, I still have intense neurological pain and severe weakness in my legs. That won’t go away any time soon, if ever. We just have to wait and see.

*A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as much as 70% of people experiencing them. They can be benign, or associated with more serious conditions. When no cause or pathology is identified, they are diagnosed as benign fasciculation syndrome. (Wikipedia)

Now for some wee bugs. I bought a 1000 power microscope on the internet that is pretty cheap but operates in conjunction with an app on my iPhone. It takes photos and videos. I find it fascinating that this little microscope can ‘see’ things I can’t see at all with my naked eye. I may use some of these photos as a basis for art work.

I caught these little guys at very high magnification on the backside of wisteria leaves. I have no idea what they are called. Any idea? I think they’re mites, but ???

56 Confessions (and the weather)

~ Roger JG Albert ~ 9 Comments

The weather has been so unpredictable lately. The meteorologists at the Weather Office must be gnawing their fingernails off. It’s been great for the garden overall except now it would be good to have more heat and sun to ripen the berries. We’re eating a lot from the garden now. Cucumbers, lettuce (so much lettuce), tomatoes, zucchini, broccoli, cauliflower, kohlrabi, and lots more. I fell kind of bad that we can’t support the farmer’s markets, but no. We can’t do that. Of course the farmer’s markets have way more than just veggies and fruit, but then there are other reasons I don’t go to places where people gather, at least not regularly and not willingly.

We sat on the porch today looking over the front of the property and off toward the village. The clouds came through at different elevations, the higher ones travelling west to east and the lower ones southeast to northwest. It was sunny at intervals. It rained a bit. It was around 20˚C most of the day. Not at all unpleasant. Tilly was her usual goofy self entertaining us with her antics on the patio. She really is a laugh a minute, that is, when she’s not biting us. Sometimes she just wanders over and sits at the top of the driveway surveying the yard below. I’d love to know what kind of puppy thoughts are going through her head.

As usual for a Thursday I took my chemo oral drugs on the early morning then went to the hospital for my Bortezomib shot at 10:30. When I went in, there was just a short wait for the lab (not that I was going there), but when I came out, there was a lineup outside going almost around the building, probably thirty people, some in wheelchairs, some with walkers waiting for clearance to even step into the hospital. Some were going to the lab (for a long wait) but others were going for imaging or to the Bone people, or wherever. You stand in line whether you have an appointment or not.

Everybody gets the standard Covid-19 song and dance: Have you travelled out of the country in the last 14 days? Have you been in proximity of someone who has tested positive for Covid-19? Do you have a fever, cough? Etcetera? I usually stack up the nos at the very beginning of the process and that usually works but not today. Today I got the full meal deal. Everybody was getting it. No wonder the lineup is so long. Of course it has to be done. I’m really not complaining. The Covid-19 protocols these days appear to be just as unpredictable as the weather. Oh well, we carry on.

Just as unpredictable as the weather is how my body is going to react to my chemo drugs. It’s been a nasty ride lately with Bortezomib creating havoc with my nervous system, making my skin on my legs and torso very sensitive to painful to the touch. Added to the pain is a weakness in my legs that is now making it very difficult to move in ways I always previously took for granted, like tying my shoes or picking something off the floor. That’s very distressing. I must confess that I’ve had moments when I have felt pretty sorry for myself. Fuck cancer!

Now I’m on a very low dose of amitriptyline, a drug that was developed for depression (at 100 mg/dose) but was also discovered to help with pain at a dose of 10mg, the dose that I’m on. It has side effects, like they all do. Pile side effects on top of side effects. What drug is doing what is anybody’s guess. The pain in my legs and back is so distracting, and along with the usual dizziness I experience all the time, I get a pretty constant brain fog. I can still put together a coherent thought, but I have some difficulty communicating those thoughts sometimes. Not always. My brain is like the weather right now. Some coherent thinking. Some stoned time. Some sleepiness. Not always in the right order. Unpredictable is what it is.

The fact that I can even write this is due to some momentary clarity induced by another of my drugs, dexamethasone. It won’t last long, so I had better hurry and get this done. I’m really wondering right now about this whole business of oncology. Like, how is it that a drug can be approved to treat a condition, in my case, cancer, yet produce side effects that are debilitating, potentially for the long term? What’s the goal here?

It’s pretty obvious after reading The Emperor of all Maladies by Siddhartha Mukherjee (2010) (a book review here), that the objective of oncology, both clinical and research is to prolong life. Many people have died because of the effects of chemotherapy. As far as drug trials go the Golden Chalice is survivability. If they get 5 months more survivability with a drug that’s considered a successful trial. Since Mukherjee wrote his book, lots of progress has been made and lots of animals have been sacrificed to the cause, but they still can’t engineer Bortezomib to do good work and to avoid beating the crap out patients just in order to keep them alive. Of course, the instinct of self-preservation is strong in most of us to the point where we are more often than not willing to sacrifice a lot just to get more life out of the deal.

My chemotherapy is really working well as far as the myeloma is concerned, but at what cost? It’s a straightforward cost/benefit analysis and I’m working on that right now. I have a strong will to live, and I’ve seen people in a lot worse shape than I’m on stick it out and squeeze the last bit of life out of their decaying bodies that they can. So far I guess my actions have betrayed my values as is the case for most of us most of the time. More on this in my next post.

44 On art (poiesis) and the search for meaning in my life.

~ Roger JG Albert

[I started writing this at 4:30 this morning. I don’t usually get up before 7:30, but my chemo meds keep me awake sometimes. I’m on a dexamethasone high. In other words I’m stoned. Let’s see how well this comes out. Well, I’m no longer stoned. It’s now 6 PM, and looking it over, I. think it’s fine, but I’ll let you be the final judge of that. It’s only a coincidence that this is the 42nd blog post in this series.]

Over the past few months, since I was diagnosed with cancer I have been on a search for the meaning of my life. I haven’t always recognized that in myself or acknowledged to myself that that’s what I was actually doing, but that is in fact what I have been doing pointedly and with urgency. There is probably nothing more capable of focussing the mind than facing a firing squad or a hearing a physician’s determination that one has an incurable cancer. The problem with the firing squad scenario is that there is no time for any reflection on the meaning of life before the bullets put an end to all reflection. At least with a cancer diagnosis, there is time for reflection. I have limited time left as a human expression in the biosphere, so I intend to use that time fully as a mortal in reflection on the meaning in my life, but more importantly as a generator of art, what Plato called poiesis.

In my life I was able to go to university and a get important post-graduate degrees in Sociology. Those years of study and reflection were exciting, stressful and tinged with contradiction at every turn and I got through them in spite of the system and not because of it, as I was fond of telling my students repeatedly over the years. I was able to learn many ‘things’ but the most important result of all of those years was my license to teach, to engage in an important aspect of my art.

Licenses are important. They are society’s way of legitimizing and concretizing in a title the fact that in the past one has acquired sufficient knowledge and capacity in a field of study or work to pass it on to others, operate equipment or on people, fix our plumbing and in a myriad of other situations. Over the years, my teaching was my art, although it was also my way of making a living and that contradiction was a constant source of irritation for me, and for people around me too, especially my long-suffering loved ones, Carolyn and the kids. During that time, though, I also engaged in the ‘plastic’ arts, in drawing, painting, and eventually in sculpture and printmaking. For most of my life I considered those latter pursuits the artistic part of my life. However, more recently, with my new sharpened mind engendered by my cancer diagnosis, I have been able to look back on my life and conclude that I was always an artist. I may have been born that way, but I think it was more an inadvertent result of my upbringing and the circumstances surrounding my birth and early years. I know now that my parents were also artists in their own ways. I know for a fact, because I worked with him at times, that my father struggled his whole working life with the contradictions he had to face every day having to earn a living doing things that were averse if not actually an insult to his inherent creativity. My father was a master craftsman, inventor, blacksmith and planerman. He was functionally illiterate too. My mother had a grade eight education and could read and write quite well. She had ten children, all still alive and kicking. Can we question her creativity? Definitely not her biological creativity, but she was creative in other ways too. She could sew up a storm and knit, cook like a pro and bake. Mygawd, could she bake! Later in life, after all the kids could look after themselves she took over my father’s workshop and started building all kinds of things out of wood. I still have a table by my bed that she built. It means a lot to me. Then, my father decided to sell the house and move into an apartment. That was the end of woodworking for my mother. She pretty much lost interest after that and it wasn’t long after she got Alzheimer’s dementia and that was that.

I feel I really need to explore in writing what my parents must have gone through during the time I was born and for some time after, and how that shaped who I became and am becoming still. I feel this exploration, my writing here, is part of my legacy, part of what I leave behind for you to learn from or simple contemplate as you would a painting on the wall in your living room, if you are fortunate enough to have a living room that is. My aim is that it engenders creativity in you, its beholders.✿

In any case, I was born on January 4th, 1947, which means I was conceived sometime in April of 1946. My parents were married on January 28th 1946. My father’s first wife, Yvonne Gaucher, died on June 22nd, 1945, seven months before my mother and father married. She died in childbirth after having five daughters. The baby, if it had survived, was to be called Roger, and I would not be. As the fates have it, he died and I was born 19 months later and they named me Roger. Can you imagine the stress my father was under? And my mother? My father had five daughters to look after. He made a call to my mother’s family in Alberta and my mother agreed to come help, look after the children and do all the domestic work. My mother and father had known each other in Alberta before he moved here with his family in 1937. Apparently my mother and dad’s first wife knew each other quite well. A short time later they were married. I can’t imagine what he was going through and we never talked about it.

Of course I was treated like a little prince. Not only was I the first boy in the family, but I had survived childbirth and so had my mother. I don’t really know what to make of my early days, not really. My mother soon had more children so my special status was soon eroded, but not much because my mother then proceeded to have four daughters in a row right after me leaving me the only boy with nine sisters. She had three more sons, interspersed with a couple more daughters.

So I have fourteen siblings in all, one of the older ones dying a few years ago of cancer. The rest of us are all still alive and kicking although a couple of my brothers-in-law have died last year. Many of my siblings are what I would call creative or artistic in work and in play. Five are afflicted with MS or another autoimmune disease. An altogether crazy bunch, but I love them all. What influence they’ve had in my life I can’t really say although they have been supportive when I needed it. And I really needed it when I was in my late teens and early twenties, depressed and suicidal. I could always count on my family. There was always a place for me at the table and a shoulder to cry on. Now I can say that I’m neither depressed, nor suicidal and I haven’t been for some time. Some people might argue that I have a right to be depressed, but I know now what depression is and it’s a waste of time. I don’t need it.

Alright, so what do I make of my life? Well, I’ve made it clear in a number of recent blog posts that I’m not chasing immortality. I’m a happy mortal kind of guy, but that doesn’t mean I’m looking forward to dying. My myeloma is being managed successfully and I may live for another ten years, who knows. When it’s my turn to die, that will be just fine. We all come to the end of the line. Songs have been written about it.

Still, it took a cancer diagnosis and what I thought was imminent death from an incurable cancer to ask the question: What meaning did my life have? What meaning does it have? In the face of death, is there any meaning? These are questions Tolstoy was preoccupied with. As Ernest Becker reports in Escape From Evil: “When Tolstoy came to face death, what he really experienced was anxiety about the meaning of his life. As he lamented in his Confessions: ‘What will come of my whole life…Is there any meaning in my life that the inevitable death awaiting me does not destroy?””

My answers to these questions came to me slowly at first over the last few weeks, then more pointedly only in the last few hours. I got answers by reading writers I knew would not fail in helping me answer these questions. The first was Ernest Becker and his book Escape from Evil (1974). Becker always knows the right words to say. He reminded me of the cultural significance of the fear of death and its significance for my personal encounter with death. Norbert Elias I read carefully. His book What is Sociology (1970) reacquainted me with my own discipline in a new, fresh way, a way of locating myself in time and space in a cultural project of criticism which clearly preceded me and will continue without me. But what of my career as a teacher? Recently I picked up a book that had been sitting in my library for thirty years untouched. It’s a book by James P. Carse called Finite and Infinite Games (see the note below). This is the book that triggered my recent reflections on my life as an artist. One section of his book deals specifically with art and culture and the relationships that we have with art as artists. I could have re-read Otto Rank’s Art and Artist but Carse does that for me. Rank’s book is always close to hand but it’s falling apart do to the handling it’s received over the years. Carse argues that the greatest struggle for any society is not with external enemies, but within itself. In society, we strive for titles, recognition for past achievements. But poietai (artists, inventors, storytellers, makers, etcetera according to Plato) are makers of possibilities. He writes (and this is a long quote):

The creativity of culture has no outcome, no conclusion. It does not result in art works, artifacts, products. Creativity is a continuity that engenders itself in others. [quoting Rank] ‘Artists do not create objects, but create by way of objects.’

Art is not art, therefore, except as it leads to an engendering creativity in its beholders. Whoever takes possession of the objects of art has not taken possession of the art.

Since art is never a possession, and always a possibility, nothing possessed can have the status of art. If art cannot become property, property is never art-as property. Property draws attention to titles, points backward toward a finished time. Art is dramatic, opening always forward, beginning something that cannot be finished.

Because it is not conclusive, but engendering, culture has no established catalogue of accepted activities. We are not artists by reason of having mastered certain skills or exercising specified techniques. Art has no scripted roles for its performers. It is precisely because it has none that it is art. Artistry can be found anywhere; indeed, it can only be found anywhere. One must be surprised by it. It cannot be looked for. We do not watch artists to see what they do, but to watch what persons do and discover the artistry in it.

Artists cannot be trained. One does not become an artist by acquiring certain skills or techniques, though one can use any number of skills and techniques in artistic activity. The creative is found in anyone who is prepared for surprise. Such a person cannot go to school to be an artist, but can only go to school as an artist.

Therefore, poets do not “fit” into society, not because a place is denied them but because they do not take their “places” seriously. They openly see its role as theatrical, its styles as poses, its clothing costumes, its rules conventional, its crises arranged, its conflicts performed, and its metaphysics ideological.

So, if my life has been about engendering engendering creativity in the beholder, I think I’ve done that, at least to my satisfaction. Obviously, the best judgments of my impact on people must come from them. Ask my former students and people who contemplate my art embodied in the works I have created and you’ll get varying answers. All I can say is my objectives in my classes and in my paintings, prints, drawings and sculptures have always been to engender a surprise and a new commitment to creativity. Therein lies some of the meaning in my life. I’ve been fortunate to have more. My children, grown women now, are the pride of my life and both creative in boundless ways. I could take credit for that, but Carolyn is largely responsible, I’m afraid, as I was absent a lot as they were growing up. Carolyn, in her own right, is a talented artist. She uses her garden as her main palette, but her skills as a cook are unsurpassed. I can’t take credit for anything they’ve accomplished as individuals, but as a family I think we rock!

That is all.

__________________________________________________________________

✿This concept comes from a book by James P. Carse entitled Finite and Infinite Games, (The Free Press, 1986). Carse is a great inspiration to me, a true artist. I will review his book and its significance for me in a separate blog post soon.

43 – Plugged in!

~ Roger JG Albert ~ 2 Comments

Time to reëvaluate! (yes, an umlaut is traditional on the second e in this word). Call me a linguistic traditionalist. So, I’ve posted over forty entries in this blog directly or indirectly on my experience with myeloma. That’s over forty-five thousand words. That’s a lot. Now, the novelty of my daily chemo grind is wearing off and even though I’m thoroughly exhausted most of the time, I’m getting restless. I may force myself to draw this afternoon. There’s some lovely forsythia outside the living room window that I admire every day. Right now it’s vivid yellow, like the daffodils coming up here and there in the yard. I’ll see if I can draw them, if I can steady my hand enough.

With the SARS-2-Cov Novel Corona virus nipping at our heels, it’s tempting to move on to discuss Corvid-19 and leave my myeloma stuff on the back burner. Well, that’s not going to happen. I’m not keen to add anything to the overwhelming internet chatter on the pandemic. You won’t find any tips or suggestions on how to deal with it here. So, I’m going to move on to some extent. I’ll still post entries on my myeloma experience if they’re relevant and new and I will post material on myeloma and Covid-19 if that’s relevant too. For instance, there was a Webinar yesterday organized by Myeloma Canada specifically about myeloma and the pandemic. It didn’t add much to what I already know. In a few minutes the local Myeloma Support group is having a round table by Zoom. We’ll see how that goes. I’ll report back. Reporting back: well, that was interesting. Zoom is unknown territory for most people so it took some time to get the teleconference off the ground. But once launched, we got to see people we had only previously communicated with by email or on the phone. Some interesting conversation around drugs and dosages along with tips on navigating the medical system. Some discussion around what people are doing to stay safe in the face of Covid-19. Physical distancing seems to be the main strategy. I went to the hospital this morning (Monday, March 30th) to get bloodwork done. Chemo patients were supposed to be segregated from the others in the waiting room but somebody didn’t get the memo because that didn’t happen. There was one woman in there who coughed the whole time. At least she was wearing a mask. So was I, for that matter.

This is a great time to be a sociology, not such a great time to have myeloma, but then what would be a great time to have myeloma?

I’ve been re-reading What is Sociology? over the past few days giving me a renewed appreciation of Norbert Elias’ work. His language is different from conventional sociology, particularly functionalist sociology, and it’s a bit of a challenge to work with concepts like ‘figuration’,’ interweaving’, and ‘interdependencies’, language I’m not that familiar with. I get a lot from his work. I have a challenge for you too based on it.

So many of us, following the dominant capitalist morality in our world have a strong commitment to individualism and individuality. We crave to be ‘different’ from everybody else and we downplay our dependencies on others while we extoll the virtues of self-sufficiency. We laugh at people in their late teens and early twenties who still live with mommy and daddy and who obviously haven’t achieved the level of independence expected of them. I used to challenge my students. So, I’d say, “you think you’re self-efficient and independent. Well, think about this: Think about unplugging your home. Think about no more water lines, no electricity coming through the wires you never think about until it’s time to pay the bill. No sewer connection. No internet. No phone. No mommy and daddy wallet. Nothing. Now do you still think you’re self-sufficient? Now, shut down the grocery store to anything not grown or produced locally. I don’t mean just the food, I mean the packaging, the jars, the plastic milk containers. All of these things are produced in factories all over the world. You are connected to every worker in the banana plantations of Ecuador, the battery factories in Mexico, the food processing plants all over the world. You depend on them every day. Do you think about that when you peel a banana or put batteries in your headphones? What if we shut down Home Depot, Canadian Tire, Home Hardware, etc. The tools you buy there: Where do you think they are they made? Mostly China these days, in factories contracted by American corporations looking for cheap labour, and escape from Labour and Safety laws, and taxes. These corporations have exported their pollution to China. Not that that was ever a consideration in their decision-making. I could write a book on globalization and how we tend to misunderstand it based on old ways of thinking about the nature of countries, their sovereignty and their relations with other countries. Now the shit has hit the fan, and the whole globalist agenda is under question. But I don’t want to get into that right now. Instead, I want to challenge you in another way.

So, we tend to see ourselves as ‘substantiates’ (an Elias term), which means we see ourselves as things separate from other things. We contrast ourselves with larger things like ‘the environment’ or ‘society’, both we think of as real. Well, what if you asked yourself: What is it about me that is essential for my survival as an organism? Then, what is ‘outside’ of me that is essential for my survival? To start, let’s think about our biology.

Our survival depends on organismic integrity. That means that our bodies have to hang together. Of course, we don’t often think in those terms. It seems self-evident that our bodies hold themselves together, so to speak, with connective tissue, skin, bone, and various fluids. That said, our bodies soon cease to ‘hang together’ if we don’t incorporate ‘things’ from the outside to ensure this process continues. So, what ‘things’ from the outside of us are critical for our survival? Or put another way, if we didn’t ‘have’ these things, how long would we survive? One ‘thing’ we often take for granted is air. Suffocation is probably the quickest way of killing someone outside of blunt force trauma or other form of violence. No air=death in minutes. Again, passively speaking, the lack of water is probably second on the list of things the absence of which produces death fairly quickly. Probably food after that, although shelter, that is critical protection against extremes in temperature and weather, is also critical.

So, in summary, it’s fair to say that the human organism generally hangs together fairly well in the absence of blunt force trauma, evisceration, and amputations of various sorts. It cannot survive for long, however, without the right environmental conditions, air, water, and food. Nor can it survive without the means of waste evacuation. It’s really quite absurd, then, to think about ‘ourselves’ as independent of the ‘things’ out there that we need for survival. We don’t exist without them. See if you can imagine yourself ‘plugged in’. Imagine tubes entering your mouth for water and food, into your nose for air, attached to your butt for evacuating solids, and a catheter for you know where. The fact is that ‘you’ and ‘I’ extend far beyond the boundaries of our bodies. The way we see ourselves as independent things opposed to other independent things flies in the face of reality. So, yeah, we live in an illusory world.

Of course, the picture is much more complicated than even that. When we are conceived, at that moment, we begin to transform the world around us, into us using the ‘food’ available coming through the placenta and umbilical cord. That process continues after birth at an accelerating rate for many years before it slows down in early adulthood in an arc towards death. That’s where I’m at, on the arc towards death. Entropy rules. It’s no fun, but it rules.

In my next post I address the way we are socially connected over generations, in time, and in space. If Covid-19 is doing anything it’s highlighting our interdependence and mutual interests. Will we finally take our connections seriously?

41 Beware of Dr. Vendedor de Aceite de Serpiente.

~ Roger JG Albert ~ 6 Comments

On my very first post in this series on my experience with cancer, the last paragraph reads:

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

I still feel that way. I’ve clearly decided to go the chemotherapy route so I won’t, in desperation, try on some homeopathic ‘treatment’ or ‘cure’ for the myeloma that is my curse for the rest of my life. Neither will I do anything to boost my immune system. It’s my immune system that is partly responsible for spreading my bone marrow cancer to distal regions of my body by facilitating the movement of the myeloma protein in my blood via macrophages (if I read that right). No. My immune system is fine for dealing with outside sources of infection, but it can’t do anything about preventing internal insurrection by oncogenes and the like.

Lately, I’ve had a couple of other bloggers read my posts, bloggers with agenda. Barbara Gannon has a blog called Cancer is not A Death Sentence and another is by Brian Shelley and it’s called CANCER WARRIORS. I believe both Gannon and Shelley are sincere and well-meaning. Not only that, they display a passionate belief in what they’re doing. Gannon has found alternative dietary and medicinal ways of dealing with cancer. Shelley found God. The battle metaphor is the same for both bloggers. If you’ve been following my blog you’ll know that I am not likely to be convinced by either approach to dealing with my cancer. For one, we are all individuals with very different bodies, different genetic makeups, at different ages, with different genders, and different underlying physiological and anatomical dynamics. Cancer, although it is basically pathological mitosis, is expressed differently in each of us. What works for you in response to any given cancer at whatever stage it’s at may not work for me. Some people argue that cancer is cancer and it can be beaten no matter what. I don’t subscribe to that perspective. Some people may be misdiagnosed so it’s no big surprise when their situation improves. It was probably nothing to start with. Some cancers in certain people may go into spontaneous remission. Cancer and its various treatments are highly complex and I’ll go with science in dealing with it as much as I can. Anecdotal evidence just doesn’t cut it for me.

That said, conventional Western research science, medicine, and pharmacology are not perfect. Scientists, medical doctors, and pharmacologists are human and have human ambitions, needs, and varying moral standards. Some even cheat. Still, I think the scientific research protocols are the best way of finding out what’s going on in the world. All claims of miracle cures for cancer that I’ve run across are based on anecdotal evidence: The “I beat cancer. You can too.” type of thing. I’m not saying these claims aren’t real, only that they can’t be generalized and applied to everyone who has cancer. One problem I find difficult to deal with is the absence of ongoing scrutiny of the claims of miracle cures. I had a friend and colleague who tried everything to survive his cancer a few years ago, including juicing and trips to Mexico, but nothing worked and he died. But, again, that’s anecdotal evidence pertaining to one case only.

Of course there are huge ethical issues when doing double-blind scientific research on the effectiveness of treatment protocols. Siddhartha Mukherjee in his book The Emperor of all Maladies deals with many of the ethical issue in oncology. Recruiting people with cancer for a clinical trial, then assigning half to a treatment group and half to a placebo group is ethically charged. The placebo group is definitely at a disadvantage if the treatment works. The question then is when to switch them into treatment while still maintaining the integrity of the research project.

Nutritional studies are notoriously difficult to conduct in any kind of scientific way. This website addresses that issue and notes that some nutritional studies have been very successful, like the one finding that sailors died of scurvy because of vitamin C deficiency. But, overall, nutritional studies are notoriously difficult to carry out and are almost impossible to conduct using the standard double-blind protocol. The website ends with a statement garnered from a meeting of several nutrition researchers who find that a balanced diet is the best diet. They also note that: “Anyone who tells you it’s more complicated than that — that particular foods like kale or gluten are killing people — probably isn’t speaking from science, because, as you can see now, that science would actually be near impossible to conduct.” More on nutrition below.

Naturopathic cures and treatments.

I have no problem with naturopathy for some kinds of issues and treatments, but I have been highly sceptical of some of their diagnostic protocols, especially things like vega testing. This website debunks all kinds of naturopathic and other diagnostic protocols. The website Science Based Medicine is always a good place to check out whether or not a claim for this or that treatment is effective from a scientific perspective. Noting that here may betray my bias for science, but I have no issues with that. However, I also acknowledge that science based medicine is now being challenged more and more by what’s called evidence-based science. There are huge issues with evidence-based research, not the least of which a lot of it is funded by industry with serious conflict of interest consequences.

My interest is mainly in cancer research and treatments. This article from the Fred Hutch Cancer Research Centre provides a fair analysis of how oncologists can address patients who are reluctant to undergo chemotherapy because of the side effects. It argues that if a patient wants to go an alternative route they should still maintain contact with an oncologist who can monitor their ‘progress’.

This website called Nature Works Best highlights the research and findings of Dr. Colleen Huber, a naturopath who’s clinic offers alternative cancer treatments. I read her article detailing her work with 379 individuals with cancer. She claims a very high rate of success from 92% for the low-hanging fruit (as I call it) and as low as 29% for patients in advanced stages of certain types of cancer. She seems to have the most success with breast cancer patients who have already had surgery. It’s hard, then, to figure out where to ascribe responsibility for remission. Thirty-two of her patients died after following her protocols. She claims that many of the other ‘failures’ (deaths) are due to patients not following her advice, especially to not eat sugar, which she claims feeds cancer cells. Her table looking at each of the 379 patients is telling. I read it very carefully, and frankly I can’t see how she can boast a 92% success rate. One of the problems is that there are twenty or so varieties of breast cancer. She doesn’t tell us which or these varieties she’s actually treating. And ‘treatment’ like I said is often post-surgery.

She has had four myeloma patients and one MGUS (describing a sort-of pre-myeloma condition. She claims that one of those patients travelled a lot and eventually died of pneumonia. Another died after leaving treatment against her best advice. A third she reported in remission but now having problems (“R, then recent elevated blood labs”). This patient reported extreme fatigue with no change due to treatment. The fourth, she reported is in apparent remission (“AR Imp quickly; could not afford to continue treatment. Then recurrence; then stem cell tx. R”) So, the stem cell transplant seems to have done the trick. I can’t see how her treatments helped at all. Myeloma is incurable by all reports so it’s disingenuous to not be clear on that point in her documentation. Her table doesn’t mention the age of the patient. That’s a critical piece of information, in my mind.

Snake oil salespeople and over-the-top woo.

You could always get a coffee enema. There are clinics nearby. Read all about it! Then you can read what Science Based Medicine has to say about it. Or you can try medical marijuana as a treatment. Here’s what the American National Cancer Institute has to say about that. It suggests that there is no evidence that cannabis or any cannabinoids can treat cancer. It does note, however, that THC may be useful for advanced cancer patients in dealing with pain and issues around appetite. Alternatively, you could try an alkaline diet. See what Robert David Grimes has to say about this in a 2017 article in The Guardian. Grimes has a lot to say too about other alternative therapies too. Check out his article if you’re interested. You can always try juicing, but even the alternative of alternatives, the Oasis of Hope hospital in Tijuana, Mexico, doesn’t advocate juicing carrots: too high in sugar. To be clear, the Oasis of Hope does use chemotherapy as a treatment, but it’s much better known for alternative therapies.

What I’m not arguing here.

I’m not suggesting here that a proper diet, not smoking, drinking in moderation, etcetera are not important. They are. However, nutritional or dietary strategies for cancer treatment are largely unfounded.

I know that there are herbalists who have a strong commitment to assisting us in our drive for healthy living and I respect that. But when it comes to cancer, the Cancer Council of Victoria in Australia has assessed the contribution of herbs in cancer treatment and says:

Herbal medicines are often used to help with the side effects of conventional cancer treatments, such as lowering fatigue and improving wellbeing. Evidence shows they should be used in addition to conventional therapies, rather than as an alternative. AND

Although herbs are natural, they are not always safe. Taking the wrong dose or wrong combination or using the wrong part of the plant may cause side effects or be poisonous (toxic). Also, herbs used with chemotherapy, radiation therapy and hormone therapy can cause harmful interactions. All herbs should be prescribed by a qualified practitioner.

I was cautioned not to drink green tea as it counteracts the effects of bortezomib, one of the meds I’m on. There are other contraindications too. And just because indigenous people have used some plants to treat all kinds of ills, it’s probably not a good idea for us to apply indigenous strategies willy-nilly. For example, cedar tea although very high in Vitamin C can be very toxic but people are drinking it and I expect they are not always in full knowledge of its effects on the short or long term. Carolyn and I have used products from Harmonic Arts and from a local herbalist to good effect but not specifically for treating my myeloma. That said, there is ongoing promising research. There is evidence that curcumin, a compound found in turmeric, can act as a proteasome regulator, and could work with drugs like bortezomib to suppress the growth of cancer cells in some types of cancer. A report in MyelomaCrowd notes that curcumin needs to be modified to stay in the body longer if it is to be effective against cancer cell proliferation.

I’m all for caution when it comes to my cancer treatment. I’m not happy being on chemotherapy but I don’t see any alternatives out there that are trustworthy or based on more than anecdotal evidence. I think I’ll stay the course. That said, I will continue to eat well, have the odd beer, rest but also get some exercise (as much as my condition allows me to).

Stay safe out there!

39 Two Days in my Diary

~ Roger JG Albert ~ 16 Comments

8:00 AM Thursday, March 19th.

On Wednesday we went to the hospital to see my local oncology GP. We reviewed my lab results and my progress to date and he was very positive about how things are going. It looks like more chemo for me until at least September, then off of them for three months after which I get bloodwork done again to see how things are going. If everything is okay we carry on for another three months. If the myeloma is again active, they’ll put me on another course of chemotherapy. He said that we should consider my disease more like a chronic disease, diabetes say, rather than as a virulent, deadly one. So, that’s all good, but I still have lots of chemotherapy ahead of me and that’s no cake walk.

In this post, I want to give you a blow-by-blow idea of what happens to me after I take my chemo meds on Thursday and Friday. I would love to hear from any of you who have had chemo so as to compare our experiences.

I have just made it so that anyone can comment on my posts. You don’t have to be a registered WordPress user to comment! Yay! Give it a try please!

Today is a good day so far. That will change in a while when I get my chemo meds. Oh, I have some joint pain and fatigue, but that’s my new normal anyway.

11:15 AM

Off to the hospital to get my chemo meds for the next four weeks along with a bortezomib shot.

1:20 PM

This time they wouldn’t let Carolyn come with me to the Cancer Clinic so she waited for me in the car. That’s because she had a cold and they’re rightfully paranoid about Covid-19. We drove home from the hospital carrying my load of pills to take for the next four weeks. I take 13 cyclophosphamide and 5 dexamethasone once a week on Thursdays. We had a bit of lunch a while ago and I’m starting to feel the effects of the meds, but not intensely yet. Tingling body is always where it starts. Today I decided to sleep off the afternoon hoping to cut off some of the worse effects of the meds.

4:30 PM

I’m actually feeling pretty good after sleeping for most of the afternoon. I’m lightheaded, that’s for sure, more than yesterday, so it’s started. The dexamethasone is starting to take effect. I’m feeling tingly all over. It’s still too early to assess how dex will affect me today. The dex effect has changed over the past few weeks. My body seems to be tolerating it better. I’m not getting the crazy twenty coffee high I was getting earlier during the first two cycles of treatment. My stomach is unsettled as it has been for the duration of my treatments. It’s a very odd sensation. Urination is still a problem although not as severe as early on in my treatments, so we’re thinking that the antibiotic might have done something, but we’re not sure. I checked to numbers from my last blood tests and my ferritin levels have dropped from over a thousand to now under six hundred. That’s great news because it does indicate that any inflammation I have had is decreasing. That said, my Lambda Free Light Chains (you have them too) are increasing and I’m not crazy about that. We’ll see what my next lab tests show. If they go up some more, I’ll be really pissed.

8:00 PM

Dex is starting to do its thing. ‘Sleep’ will be interesting tonight. I just took my usual bunch of pills but I’m taking two Benadryl tablets to counteract the usual itching and swelling around my bortezomib injection site. I’m also taking a Dulcolax tablet to counteract the constipation that comes with hydromorphone. That seems to be working. The burping has started but isn’t severe yet. That will come tomorrow. I’ll save more entries here until tomorrow. I’ll be in bed soon in any case.

8:00 AM Friday March 20th

So, last night was a dex sleep meaning that it’s a sort of sleep or at least a state akin to sleep. It’s hard to explain. I feel that I haven’t slept at all. Looking at the clock every fifteen minutes or so seems to confirm that but I may be dreaming all of that. I don’t know. I think the Benadryl is helping me counteract the dex, but I can’t be sure. I’m wide awake this morning having got up at 6:45 after Princess (the cat) came to me screaming for food. I ignored her, but it was too late. No point in staying in bed. I’m having very interesting experiences with pain lately too and this morning is no exception. I have pain spiking here and there but nothing constant. It usually comes when I move so I just sit still a lot! I know I have to get up and move around, and I do, but I then pay for it later. Last night I had no issues with my peripheral neuropathy (extremity pain and numbing) which is unusual. Usually peripheral neuropathy keeps me awake or tossing and turning. I’ll do more stretching today to see if that helps with that in the coming week. I’ve been doing a fair bit of stretching for my neck and back pain and that seems to help my peripheral neuropathy. Burping has resumed. Fuzzy head…not too severe yet, blunted by the dex. I find it fascinating to observe what’s happening to my body as I go through cycle after cycle of chemo. The effects change every time, sometimes drastically, sometimes almost imperceptibly. The interactions between the various meds I’m taking make it difficult to trace drug to effect. I’m trying to relax as much as I can. Stress doesn’t help. I think I’m doing okay on that front.

10:30 AM

The dex is starting to really kick in now. Elevated pulse rate and feeling very lightheaded. Overall, though, because I know what to expect I’m not getting stressed out. I feel it’s so important for people in chemo to very carefully track the effects. It’s so important to read the information sheets that come with the various drugs we take. In the case of my urinary issues, I called my GP with what are classic urinary tract infections (UTI) symptoms but only after Carolyn read the information sheets urging us to call in if we have signs of UTIs. We have to keep on top of it because I can’t afford to get an infection of any kind. Now I’m getting the shakes too. Par for the course. Time for tea.

12:25 PM

Well, the dex has kicked in with a vengeance. My cheeks are flushed, I’m hyper yet exhausted, unsteady on my feet, but we’re going to have lunch up by our pond. Yes! I can still write, but who knows about later today or tomorrow. Then, I may be good only for watching YouTube videos about people rebuilding their old sailboats, or doing woodwork, sometimes both. It’s all very exciting. I haven’t seen any videos yet on watching paint dry, but it came close on a video about somebody applying bottom paint to their sailboat a couple of hours before it was to go back in the water after being on dry land for weeks.

8:00 PM

Dex is still with me but now I’m feeling really exhausted so I may sleep better tonight. I generally sleep quite well. Dex nights (Thursday nights) are exceptional. I’ll be taking my meds now: Hydromorphone, Benadryl, and Dulcolax. It still burns when I pee and I have to pee often. My eyes are burning but that’s probably as much an effect of age as it is of the chemo. I’ve got the shakes still, probably until well into tomorrow. Pain is manageable. Exhaustion inevitable. I’ll go to bed in an hour or so, do a bit of reading then sleep (I hope). Goddamn burping! So annoying.

AND please comment! Especially those of you who have had chemo treatments in the past. You can do so now without being a WordPress user.