I taught university level courses in sociology and criminal justice for over 30 years but now I'm retired and at 72 was diagnosed with multiple myeloma, bone marrow cancer. This site is now a chronicle of my journey with myeloma.
That means that, regrettably, I’m no longer in remission. Myeloma is back doing its destructive thing in my bones. Well, technically, myeloma never went away and as my local oncologist often repeats myeloma is incurable but treatable. As he says, we can beat it down but we can’t beat it to death.
I really wish I had more psychic energy to put together these posts. Right now it’s very difficult partly because I have low physical energy levels but I also have to deal with the reality of being 74 years old with a cancer that won’t go away and that takes up a fair bit of brain space.
So, next week I’m back on chemotherapy. This course of therapy is very different from the first course I went through last year. The very first primary chemo drug I was on is called lenalinomide. I was on it for less than a month before I broke out in a nasty rash around my midsection. At that point my oncologist pulled the plug on it and put me on another med called Bortezomib. I was on it for 7 months or so before I ended it. I was supposed to be on it for 9 months but after 7 months I was in such pain and had such loss of mobility that I felt I had no choice but to stop the therapy. It took a few weeks for the symptoms to partially dissipate, but I felt a lot better soon enough. I always wondered though, in the back of my mind. when the myeloma was going to reactivate because I knew that it would. Now we know.
I start chemo on Feb. 3rd. I’ll be on an IV for most of the day. I’ll return the next day for a repeat performance, then once a week after that. The main med star for this course of therapy is Daratumumab. It’s a very different drug than I’ve previously been on and we’re very hopeful that it will perform well. In addition to the Dara, I’ll be getting a very low dose of lenalinomide. Although it gave me a huge rash the first time around my oncologist decided to give it another try starting at a very low dose. They’ll also closely monitor any allergic reaction I have to the lenalinomide. I’ll also get a regular dose of dexamethasone, which is a corticosteroid. It produces some strange effects, but I’m accustomed to them and I’m sure I’ll get along well with dex.
Along with my regular chemo meds I’ll be taking an assortment of other drugs to help with allergic reactions and to help prevent blood clotting.
One complication I’m now facing for the first time is the possibility that I’ll need radiation treatment on my jaw. Myeloma is a disease of the bones. I have some fairly large lesions in my femurs. They’ve been well monitored. Now, however, over the past while I’ve been getting some very strange feelings in my lower left jaw. I’m losing feeling in it and if I touch it in the wrong (right?) place, I get an electrified stabbing pain. I have a phone interview with a radiation oncologist on February 17th. I’m not sure what she can determine over the phone, but we’ll see.
One thing for certain is the fact that I’ll be spending a lot of time at the hospital over the next six months. After that things will slow down and I’ll have to go into the hospital only once a month for as long as this course of meds works.
Now, look at this African violet. She is a wonder! I never expected her to bloom as long as she has. She actually put out more petals over the past few weeks. What an inspiration she is!
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.
But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.
So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.
I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”
Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”
One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.
So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.
Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:
Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.
Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?
1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.
Some of my artist friends have remarked that over the past month or so that they haven’t raised a brush to canvas, or engaged in any other art practice. It seems that gardening and cleaning have taken precedence over art production in the past while. For many, isolation, the cancellation of art shows, and slow sales have dampened creativity. That’s been my experience too. I’ve done a little drawing, but the bulk of my time recently has been taken up with cleaning my studio and workshop and doing maintenance projects around the property to the extent that my energy and pain levels allow. I have not written anything in quite some time. My last blog post was about our gardens here and not so much about my myeloma or Covid-19. Carolyn’s gardens have been so uplifting!
That said, Covid-19 certainly has me tongue-tied at least as far as talking about my cancer goes. The myeloma that I’m plagued with seems to have more or less evaporated, at least according to my lab results. It’s still incurable, but it’s likely that I will go into remission by the end of the summer and thankfully get a break from chemotherapy, I’m hoping for a long break. Of course, the oncologists promise nothing and I can understand that. So, it seems, myeloma is not the cause of my current health deficits, rather, the chemo drugs are largely responsible for the many side-effects that I experience every day. Old age, of course, has slowed me down. As Robert Sapolsky writes:
“we are now living well enough and long enough to slowly fall apart. The diseases that plague us now are ones of slow accumulation of damage—heart disease, cancer, cerebrovascular disorders.” (from “Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping (Third Edition)” by Robert M. Sapolsky)
Yeah, that’s me. But, strangely enough, about a month ago I started feeling better. I suddenly got more energy. I could use my shop again and do things I have been unable to do for months. I seriously doubted that I would ever be able to handle tools again, especially chainsaws and the like, but I am. It’s wonderful! It makes life worth living again. I think my improvement is in part the fact that my body is adapting to the chemo drugs.
For some time I seriously wondered if I was not destined for a few more years of moderate to severe constant pain, low energy, dizziness, peripheral neuropathy, bowel issues, irritated eyes, headaches, and various other unpleasant bodily sensations. Death seemed preferable, frankly, although the thought of dying never did appeal to me at all. I may be able to intellectually accept the idea, but the reality of end times is another thing entirely.
Feeling better was such a relief. Then Covid-19 assaulted our lifestyles and sociality to an extreme, and we’re still trying to figure out where we go from here. Confusion reigns. What will the summer be like? Will the kids be going back to school in the Fall? Will we be able to get out canoeing at all this year? These are all open questions with no definite answers.
For a sociologist, Covid-19 and other potential future pandemics are an unintended consequence of globalization and are inherently interesting by that fact. The world has shrunk substantially over the past forty or fifty years in ways that are not readily obvious or apparent. Manufacturing businesses only incrementally moved their production operations off shore. The changes were, and still are almost imperceptible. It’s hard to pinpoint the exact time when refrigerators, car parts, computers, tools, etcetera were no longer produced in North America, even though they are still largely designed here by corporations that still control their manufacture and assembly in places like Wuhan, China sometimes in plants they own and sometimes by Chinese contractors.
China has made it easy for them by establishing export-processing zones free of taxes, health and safety regulations and with low wages.
We know the container ships are out there. We know the airlines blanketed the earth with flights carrying both cargo and passengers at rapidly rising rates, and the internet has made just-in-time (Japanese-type) production possible along with the easy flow of finance capital. I can’t imagine there’s any turning back the clock on globalization, but the pandemic has exposed one very serious Achille’s heal of global corporate capitalism. When commodities and people move so easily and necessarily all over the globe in such immense volumes, it’s no big deal for viruses to hitch a ride on unknowing and unsuspecting travellers. The price of cheap commodities is exposure to viral threats that were previously contained in specific geographical areas. Smallpox was not the first pandemic but when it was introduced to North America hundreds of years ago now it killed tens of millions of indigenous people in wave after wave well into the Nineteenth Century. The Black Death in 14th Century Europe probably originated in China and arrived in Europe via new trade routes. It also killed tens of millions of people. We open up long distance trade at our peril. History has taught us that, but we haven’t learned anything from it. Seems we failed the exam.
So now what? Well, a friend (an anthropologist) and I discussed this last Monday evening and we concluded that although corporate America and Canada would love to control the process and the narrative, the more likely issue for business profits will be whether or not individuals like you and I gather up enough confidence to get out there and spend money on services and commodities. If we don’t, or are slow on the uptake thanks to successive waves of Covid-19, business will flounder and will have to rethink a globalist strategy that for decades has laid a golden egg for them. That won’t be easy for a number of reasons, one being that productive capacity has escaped national containment and it’s near impossible to produce a Ford motor car these days without assembling over four thousand parts made all over the world in factories from Mexico to China to Sri Lanka and India. It used to be that Ford produced cars in Dearborn, Michigan from scratch, bringing in all the raw materials necessary in the production of a car and making all the parts on site. Those days are long gone. Can they ever return? Maybe, but the price of vehicles and everything else is bound to rise if the nationalization of production were to be successful, possibly making most vehicles and most other commodities unaffordable to an increasingly impoverished workforce. Catch-22 is real. We’re living it right now.
Thankfully we still have our garden. Here are some pictures for you: The first three images are of the same scene taken a week to ten days apart. The greening has been very fast thanks to ideal growing conditions. The others are just a collection of pictures of flowers I chose at random. Enjoy!
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.
Off to the hospital to get my chemo meds for the next four weeks along with a bortezomib shot.
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.
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.
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.
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.
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.
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.