And the beat goes on…

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.

__________________________________________________________________________

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

#68 What to write?

I’m finding it hard to get down to writing these days. I can’t seem to get settled. Part of the problem is that my pain doctors are still trying to come up with just the right cocktail of meds to deal with the pain I’m feeling even though I’m not on chemotherapy anymore and I won’t be for the foreseeable future. Being off of chemo and not finding any myeloma protein in my blood hasn’t had the effect of attenuating my pain much. But there are other things that are responsible for my restlessness too.

Like many of you I worry about the American election. I worry about the potential for mass violence and civil unrest in the US although I am heartened to read today that many influential Republicans are distancing themselves from Trump’s current craziness around the vote count, and that Pennsylvania and Georgia have provided Biden with a slim positive margin over Trump. The reality is that even if Biden is declared the winner it won’t be over for some time yet and as many pundits have pointed out, Trumpism is a long way from done.

Compounding the issues I have with the unpredictability of myeloma and the American election, Covid-19 seems to have gotten new legs all over the world and it has me concerned. BC hasn’t escaped its resurgence. I guess I could write about the over 400 new cases in BC yesterday and the obvious neglect of precautions around mitigating factors like wearing a mask or social distancing.

I could write about Norbert Elias and his distinction between involvement and detachment. Just as a teaser, I can tell you that Elias would say that the state of affairs in the US and of the world in general faced with a global pandemic is the result of too much involvement and not enough detachment. But maybe I’ll save this topic for later.

I suppose I could write more about my myeloma, but it is in remission. I’m not going to the hospital weekly. There isn’t much to report. The fact is, I may be in remission but I’m not living a pre-myeloma life. It’s up in the air. I should be back to ‘normal’ I guess, but I’m far from that. I’m in constant pain from a variety of sources: past surgeries, arthritis, congenital disk issues, cancer, and chemotherapy. As I noted above, my palliative care doctors are trying to put together a cocktail of meds to at least get me to a place where the pain is reduced to a point where I can do things again. So far, we haven’t found the magic formula but we keep trying. I’ll be getting an MRI later this month on my back. It’s actually two MRIs, one on the upper part of my back and the other, a couple of days later, on the lower part of my back.

So, I spend most of my days at home sitting in my recliner or going to my studio and rather aimlessly putting dabs of paint here and there. Sometimes I watch YouTube videos on sailing, shipbuilding, and woodwork, which is something akin to watching daytime TV in the old days. Every once in a while Carolyn will take me to the River Walkway and shopping. I stay in the car with the dog while Carolyn runs the gamut in the grocery store. I go to bed early, often as early as 8:30 and get up eleven hours later. I get bummed out probably more than I should. I’m generally quite positive, but the trifecta of Covid-19, myeloma and old age has got the better of me at times. Turns out I’m just human after all.

I guess I could write about death but I’ve gone a long way to exhausting that topic on this blog. But, come to think of it, I promised a reader of my blog that I would write about respect for death. In a recent blog post I threw out the question: “Of course, respect for life also means respect for death, because they are not separable. Life depends on death. We don’t respect death now. We fear it. What would respect for death look like?” This is quite an unusual question it seems. We easily talk about respect for life but we rarely talk about respect for death. It’s clear that we have a preference for beginnings and not so much for endings. Many religions get around this issue by denying that death is the end of life, considering it the beginning of eternal life instead. I want to leave this topic for a future blog post so I won’t carry on with it here and now. Maybe for now I’ll just watch a YouTube video on the rebuilding of the pilot sailing ship Tally Ho. The ship is coming along nicely. Planking starts soon.

Raccoon Life

This is what happens to raccoons who mess with dogs around here. It does have a strange look on its face doesn’t it?

If you have a special topic you’d like me to address, please leave a comment here or on Facebook. Don’t be shy. I’m happy to go off on most any topic, but of course I’ll pick and choose the ones I want. Questions about cooking would probably not get much of a response from me, but woodworking might. Should I write more about patriarchy and misogyny? It’s a subject near and dear to my heart. Hmmmm.

54 Describing Pain can be a Pain.

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.

Princess and the Fountain.
Puppy. No name yet.

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.

46 I’m sick, but I’m well.

I’m writing today to let you know what’s up with me. I still don’t intend to embark on a regular program of blog posting, but things have changed for me over the past while and I thought I’d let you in on the changes to my situation. But first, a bit of a re-cap.

When I was diagnosed with multiple myeloma in early October of last year, I was in pretty rough shape. It became clear to us then that I had had myeloma for some time before, probably for years. Over the past few years I’d had to back away from a number of volunteering gigs because I was too exhausted most of the time to be of much help to anyone. I was not much help around the house and property either. I stopped painting and drawing, and sculpture was out of the question. It was no fun at all. I felt rather useless. And because there was no diagnosis for years, I questioned my own sanity and vitality. The cancer diagnosis was patently not what I had hoped for, but it was an explanation for how I felt and for the pain and exhaustion I had experienced for years before. In some ways, I felt a sense of relief.

Then, in November, 2019, I became a full-time cancer patient. Myeloma became the main focus of our lives. We read everything we could about it online. We went to Victoria for a consultation with the oncologist I was assigned to at the BC Cancer Centre. That trip turned out to be a disaster. Aside from the myeloma that was causing me a lot of pain and distress, during that trip to Victoria I had to deal with a flare-up of a chronic degenerative disk problem, and of the arthritis in my neck I’ve had for years. I can’t tell you how discouraging that was. I was practically an invalid to the point that we asked around to see if anyone had a wheelchair we could use because we figured I’d need one.

The chemo regime I was initially put on caused me to get a huge rash all around my midsection, so my oncologists decided on a different cocktail of meds. This was quite discouraging because I wondered if there was any cocktail of chemo drugs that would work for me. Finally, my oncology team settled on the set of chemo drugs I’m on now. I’ve just started my fifth five week cycle of chemotherapy. I’m scheduled to continue on this program at least until late summer.

At first the chemo drugs kicked the shit out of me. By that time, I was also taking a low dose of hydromorphone, a synthetic opioid, to deal with the pain, and I had to take Dulcolax to deal with the inevitable constipation brought on by hydromorphone. My peripheral neuropathy was extremely annoying in that my hands and feet would constantly go numb and tingly. My whole pelvic area seemed to be on fire at times.

The first three cycles of chemotherapy had me questioning whether or not I should just shut it down and deal with the consequences. I couldn’t see myself living for any length of time in this state of pain and exhaustion.

Then, something changed. I don’t know if it’s because my body has been getting used to the chemotherapy or that the meds have been very effective in dealing with the myeloma. Over the past while, my bloodwork has gradually indicated a complete attenuation of myeloma symptoms. My blood seems to be back to normal and the signs of myeloma have all but disappeared. That doesn’t mean I’m cured, by any means. It just means that I may be going into remission. How long that might last is anybody’s guess. When the myeloma comes back, my oncologist will put me on another course of therapy. That could carry on for years to come.

So, lately I’ve had a surge of energy and I’m now able to do things! Oh, I still have pain and I still get tired, but I can do stuff! For instance, I’ve been able to help Carolyn build boxes for her garden beds and yesterday we rebuilt part of the structure that holds up the massive wisteria we have that surrounds our deck. I even used my chainsaw! If you had told me in January that I would be using a chainsaw in April I would have laughed in your face.

So, yes, I’m still sick with myeloma, but I’m now without major symptoms of the disease, and the hydromorphone is dealing with the pain I still have and will continue to have for the rest of my life. I can live with that. Basically, I’m feeling well. My body seems to be tolerating the chemo drugs much better than over the past few weeks. Some of the side effects of the chemo drugs are quite nasty, but I know how to deal with them now. I’ve become a proficient cancer patient.

Now, if we could only get rid of MARS-Cov-2, I could, we all could, get back to some proper socializing and I could hug my grandchildren again. The truth is, however, that my life hasn’t changed much because of the pandemic. I’m highly susceptible to infection because of the chemo and I can’t be around sick people for that reason. Covid-19 has just made it so that we have to be extra careful.

So, I’m cleaning up my studio and my shop. I’m looking forward to doing some painting, printmaking, drawing, and sculpture. I’m working towards restoring our canoe. The fact that I can even contemplate these things has changed my life yet again. Overall, I’m pretty happy with the way things are going.

The situation in the world is another thing entirely. The irrationality of modern neo-liberalism in the face of climate change and the pandemic continues to cause me consternation and worry. I hope we, as humans, can collectively get our shit together and build a more modest future, one in which we are in tune with each other and the natural world of which we are a part. I know so many good, caring people, but the structures of global capital run deep and are highly entrenched. Ignorance and denial still characterize large segments of the population. Even with the majority of the population consisting of good, caring people, I have no idea how to fight these massive reactionary forces. Covid-19 has shown us that massive changes is possible and desirable for our quality of life, although it’s probably not a good idea to leave desired social change to the recurrence of deadly pandemics.

39 Two Days in my Diary

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.

35 Me, my Body and I: Part 1

I’m quite attached to my body. Frankly, it is a long way from perfect, but I’ve grown fond of it over the years and have become increasingly tolerant of its idyosyncracies and foibles. It’s served me well in lots of ways. One special way it’s done so is by helping to create my two daughters thus ensuring genetic continuity for me and Carolyn. It can’t take a lot of credit for that, Carolyn having done most of the heavy lifting, but still, there were moments of joyful participation in the magical process by which my daughters were conceived and born.

Now, however, my body has decided that it’s getting time to move on. It seems to be quite relentless in this idea. My body has an intelligence of its own, as does all life on the planet. It’s not going to sit still. Life is about change. I’ve pretty much come to grips with dying. I understand it intellectually and am now in the throes of living it. Death is an ultimate form of disengagement from the world for me (I), but in another sense it’s just another form of re-engagement for all the atoms and molecules that make up the complexity of the structures in my body.

For me, as I’ve noted before, we are the stuff of stars. Translating that into language closer to home, it means that the material that makes up my body and all life on the planet has always existed and will always exist as long as the universe is around to sustain it. According to Brian Cox, the universe itself is finite so all bets are off as to what happens to matter and energy in billions of years when the universe itself is worn out and darkly still. For the moment, however, we can say that the universe is the ultimate driver of life on earth and anywhere else it might exist in the cosmos. “Life” here needs to be conceived in very broad terms and not just related to biological organisms. Galaxies can be said to have a life span, mountain ranges and continents too. Nothing is forever. Nothing.

There are two aspects of myself that are of interest to me for this discussion: what happens to my body after death and what happens to my consciousness. These are no longer arid philosophical considerations, they have never been closer to home in a real visceral sense for me, and are mobilizing all of my intelligence and emotional energy.

Without sounding too arrogant, I think I have both of those pretty much figured out after fifty years of study, thought and introspection. As far as my body goes, it’s quite simple, really. I’m a big proponent of simplicity in the search for solutions to life’s problems. That means that I adhere to the philosophical principle called Occam’s razor, or the idea (without being too simplistic) that the simplest solution to a problem is probably the best.

“Antoine Lavoisier described the law of conservation of mass (or the principle of mass/matter conservation) as a fundamental principle of physics in 1789.” That formulation was followed later by the law of the conservation of energy and later still, after Einstein, by the law of the equivalence of mass and energy or the idea that mass can be transformed into energy and vice-versa, but neither can be lost in the process. Bringing this idea down to my level, it is my sense that what makes up my body has always existed and always will, giving me a real sense of connection with all life on the planet and a very real sense of continuity with all life, past and present, including with my ancestors. Put simply, when I die, my body and all of its constituent elements return to the pool of raw materials available for the construction of new forms of life, as I’ve noted before. I can’t emphasize enough the notion of continuity here. In the face of my immanent annihilation, I take solace in the notion of my intimate connection with life in the cosmos and as part of an ongoing process of life. That still leaves me with a problem. What about my consciousness?

I think that my consciousness, when my heart stops beating, will no longer exist in any way, shape or form. Why should it? My consciousness is organically tied to my body and cannot exist without that living connection. Break that connection and the light goes out. So, in anticipation of my death, I may mourn the loss of consciousness above all. That doesn’t mean that I think it has any means or justification for existence beyond the demise of my body. Remember Occam’s Razor. I see no need at all for any supernatural intervention in all of this, something I think is unnecessary given the perfectly plausible and simple scientific explanations available to explain life and its continuity. It seems I’m probably in a minority on this one.

Now, if I were to write a play based on what I’m going through at the moment, I would surely incorporate as a basic plot line the plethora of imaginative constructions (ideologies) that argue that consciousness does not die with the body, but has a life of its own and goes on ‘living’ after the heart stops and all brain activity ceases. I’d have to put my own ideas of continuity up against the age old ideas of the perpetuation of consciousness beyond bodily death. I can envision a Waiting for Godot or My Dinner with Andre type of play. Frankly, I’m perfectly content with the idea that my consciousness will not outlive my body. It’s the simplest and most elegant solution in my mind although it has some serious social implications that I need to explore next. However, in the play I envision, proponents of the immortality of consciousness and/or the soul would need to have their say.

It’s not a huge stretch to go from the perpetuation of consciousness after death to the idea of the soul and its existence independent yet connected to the body and its survival post-death. The ethnographic literature is full of descriptions from ancient cultures about the role of the soul in human life and its immortality. Sociology addresses modern versions of this idea. It seems that for millennia, humans have been loathe to entertain the possibility of total and absolute death and have been, across the board, wedded to the idea of the immortality of the soul even more than they have espoused the existence of God or any other supernatural force. Thousands of religions and their associated churches or societies have come up with often contradictory ideas related to the makeup and activities of the soul and its place in the universe. These contradictions have often been the source of violent confrontations and pogroms, because if my idea of how to get to heaven is the right one, yours has to be wrong and I’ll kill you to show how much more powerful my conception is to yours. These are ideas I need to explore in part 2 of this post.

Stay tuned for part 2 which I’ll release on Sunday, March 8th.

31 Interesting Couple of Days

Yes, interesting couple of days. I’m on a dex high right now after taking my week’s worth of chemo meds yesterday. Good time to write. For those of you who have been reading my blog, you’ll know that dex (dexamethasone) gets me stoned like I’m on twenty cups of good medium coffee. I get the shakes with it too. It’s a little difficult to keep my fingers on the right keys on my laptop. Still, it works for me.

Wow, how my life has changed in just a few months since my diagnosis. Again, for those of you who have been following me along over the past few months you’ll know that my diagnosis just confirmed for us that I was pretty sick for a long time, unable to do things I so enjoyed like drawing, printmaking, going out, working on non-profit boards including the board of the Cumberland Museum and Archives. The Museum Board is a great board and I’m hoping to get back to active involvement in a reasonable time, but to be realistic, it probably won’t be for a while yet. I need to figure out lots of things, including how much I can back off my pain meds and still be okay.

Because oncologists deal with organic disease, they don’t deal well with pain, which, as I’ve noted often in my past blog posts, is invisible and difficult to diagnose. I think that if doctors have themselves been touched by pain issues, either themselves or members of their families, they may have a better understanding of what people in pain experience. My orthopaedic surgeon came right out and told me that Western medicine isn’t good with pain.

No wonder so many people turn to alternatives to deal with pain, physical or psychic, even though there is no science behind their use. Simply, put all forms of medicine, effective or not can’t deal with the huge, overwhelming elephant in the room: death. Medicine, by definition, is about healing the body. There is no healing death. Faced with that wall of immovability, we as individuals grasp at straws. Some of us, I daresay many of us not captured by the statistics, turn to non-medical solutions to pain management. The most turned to alternative to modern medicines of all kinds is alcohol. It’s cheap, it’s legally available, and if you don’t push the social and legal boundaries around its use, you’ll be okay. You’ll be able to avoid opprobrium and jail. Of course, there’s a lot of controversy about addiction, its sources and possible solutions to substance abuse, but the reality is that mental illness is a huge part of the equation and underlies much of the ‘problems’ we humans have in dealing with life and its many challenges.

Gabor Maté

I’m with Gabor Maté when he argues that much of mental illness is engendered by early life trauma mixed with underlying facilitating organic, physiological, even cellular level factors. There is no doubt that genetics play a role in determining quality of life as it relates to pain and suffering. Maté argues that no issue is more relevant than early childhood trauma in determining how we deal with pain in later life. I don’t know if Maté’s argument will ever win the day, but if it does, you should be able to walk into your doctor’s office and expect to be asked right off: “Tell me about what it was like for you as a child. Tell me about your mom and dad. How did you get along with them.” I’m so tempted to write up a short(ish) questionnaire to address some of the issues around parent/child relations in early life. Somebody has probably already done it, but I haven’t done enough research to figure it out and besides, I have ideas of my own to test out. In any case, back to my main point in writing this blog post.

Dr. Fehlau

Wednesday at 1PM, Carolyn and I went to the hospital to meet with the staff in the Palliative Symptoms Management Clinic (or something like that). We met with the nurse, Adele (not sure I ever got her family name) and Dr. Barbara Fehlau, Inc. Dr. Fehlau used to work at the clinic where my family doctor is located in Comox. Now she works full time in palliative care and pain management using whatever techniques she finds useful which she proudly notes she found travelling all over the world. She didn’t say so specifically, but she alluded to the fact that modern Western medicine is pretty good at using drugs to deal with pain issues but lousy at any other treatment protocols. She has a pain clinic where she uses a range of techniques to alleviate pain including acupuncture. She’s a very strong proponent of meditation and says she meditates for forty minutes in the early morning and another forty minutes before bedtime. I used to meditate every day and for some unfathomable reason stopped. I have opinions about meditation and other ‘mindfulness’ activities but they will have to wait to be expressed in another post. In any case, Dr. Fehlau is calm, very controlled, and I am cautiously optimistic. She has a personal history of dealing with pain and told us that she was about to get knee replacement surgery. I’ve been to the pain clinic in Nanaimo and that worked to some extent but I’m still dogged by pain. The myeloma isn’t helping of course.

Okay, so now what? Well, Dr. Fehlau told me to call her clinic and get in to see her there so she could do some interventions. Then she talked about end of life issues and asked me if I was aware of the services offered in the Valley around end of life palliative care, MAID, etcetera. I said that I did know some things but there’s always more that can be learned. I’ll get on that.

Speaking of souls, do I have a belief system? She asked me about my belief system and if I had beliefs that some people find comforting as death approaches like a fast train in the dark. I said ‘physics’, that’s my belief system if I can even say I have any kind of belief system. I was never big on ‘soul’ music. Oh, I think that we humans are extremely creative in coming up with ways of finding some sense in death and the creation of the ‘soul’ is one of those. Whatever rocks your boat, as far as I’m concerned. Maybe it’s time I explain more about my philosophy of life, but it will have to wait too, getting in line with my ideas about meditation and other ‘mindfulness’ strategies.

So, now I’m back in my bed, staring at the ceiling with the light filtering through the blinds at the head of our bed. Dr. Fehlau, knows that I’m on the death train because of the myeloma I have and she is clear that my future can be counted now in months rather than years. Pain is one thing. Strategies for making peace with life when I have very little left is another thing. And what about Carolyn, Marika and Arianne. Carolyn is the love of my life and my daughters are very near and dear to me. I need them to be involved in the process of my dying but it’s not easy. Carolyn, being the person that she is, has been thinking a lot about what it means for me to die at home. She’ll need some help, but she can speak for herself around these issues. Help is available for respite and home support. Carolyn has to think about life without me too. She’s five years younger than me so that’s an advantage right there. With some help she may even be able to continue to live where we do now if that’s what she wants. Unfortunately it’s impossible to make too many plans too far ahead, but there are preparations that, made now, will help a lot when the time comes.

I may be premature in thinking about these things, but I really can’t help myself. I need to know. Do I want to consider Medical Aid In Dying? You bet. If if comes to that. One thing though: I am now connected to some of the end of life services in the Valley through Community Home Care. That’s a new one for me. Man, there’s so much to learn about dying!

Addendum:

This post is already long enough but I can’t help giving you a taste of how our daily conversations go these days. They would be completely incomprehensible to people not ‘informed’. So here is a typical early morning talk. Me and Carolyn.

Carolyn: How did you sleep?

Me: Well, last night Ben rocked me to sleep while looking after the issues around my injection site. I slept from 11:30 until 6:30 straight.

Carolyn: That’s great! So you talked about changing your hydro routine. What do you want to do about that?

Me: I’m thinking of taking two breakthroughs this morning then another two around mid-afternoon while I wait for Dr. Fehlau’s 4.5 prescription to come in. That should keep me going until eight when I can take a six slow-release. The dex is kicking in. Sleep tonight could be a challenge. The cyclo will slam me down though, counterbalancing the dex. The Duc has to do its work too. I’ll see about going poo earlier in the evening so that I don’t have to get up during the night. Maybe Ben can come help me sleep too. We’ll see.

[Carolyn is off this morning to pick up a prescription for me and to take care of some Museum business. We talk about the Museum a lot too and about other things. Come to think of it, I think some of those conversations would also be incomprehensible to the ‘uninformed.’]

See ya later.

30 Living in the Shadow of Death

Strangely enough, I find myself wondering about what it would be like to live on death row.

We don’t have death rows in Canada, but there are about two thousand six hundred Americans in twenty-nine states right now sitting in cells awaiting their deaths by lethal injection or by other means, depending on the state. Most are still waiting for their date with the devil because they can appeal in so many ways and it seems that the average time now spent on death row is over sixteen years. There is an increasing hue and cry in the US about the time people have to spend on death row arguing that the wait itself is “cruel and unusual punishment.”

…the European Court of Human Rights in 1989 ruled that extended periods on death row violated a provision of the European Convention of Human Rights that forbids “inhuman or degrading treatment or punishment.” While acknowledging the legality of the death sentence in certain cases, it nonetheless forbade Britain to deport a German man to Virginia to face capital charges because he might spend years on death row facing “the anguish and mounting tension of living in the ever-present shadow of death.”

https://www.bnd.com/living/liv-columns-blogs/answer-man/article151691567.html

Right, “he might spend years on death row facing ‘the anguish and mounting tension of living in the ever-present shadow of death'”. Well, you know, I’m feeling a little like that myself, actually. I’ve been told I have an incurable cancer, but one that can be treated. It looks like I will go into remission sometime, probably in a few months, but who knows for how long. After that, if my myeloma doesn’t react to new treatments upon an inevitable relapse, I will surely die from organ failure. So, I wait and wait and wait not knowing if my next chemo treatment will work or not. The end result is preordained, however. No getting around that. How is this different from a death row inmate who applies for an appeal for his terminal sentence not knowing whether or not he will be successful? If he is successful this time, what about the next time? He knows that at some point the avenues for appeal will run out. When that happens he will suffer from organ failure like me, but that will be a systemic, total failure of all bodily systems as he lies there on a gurney in the execution room being administered a lethal injection of a deadly concoction of poison.

The analogy I use between my cancer diagnosis and a death row sentence is certainly not perfect. No analogy is. For instance, I don’t have to spend the bulk of my days in a small cell with bars. Nor do I have guards watching over me. That said, the comparison between my myeloma diagnosis and a death row sentence is fair if focussed on the psychological dimensions of an indeterminate cancer survival prognosis and an indeterminate execution date for the death row inmate. Chemotherapy is akin to an appeal: both buy some time but just postpone the inevitable.

I imagine that death row inmates are not pre-occupied twenty-four hours a day with the fact that they will eventually end up on the gurney in the execution room more than I am focussed all the time on the fact that my cancer is incurable, and hence terminal under the ‘right’ conditions. It’s just that the uncertainly of the situation is combined with the certainly of the outcome. That is disconcerting to say the least. I am definitely living “in the ever-present shadow of death”, but, of course, we all are. My shadow is possibly more opaque than yours at the moment, that’s all. Until I got my ‘death sentence’ I could go about my days thinking about projects I was doing, walks we would be going on, trips we would take. Now, it’s not so easy to do these things. Oh, it’s still possible, but utter exhaustion, chemo, lab and doctor visits, imaging sessions, etcetera, complicate things. I can only hope things will be different when I go into remission. I have a canoe that needs a new canvas skin and I have a sculpture I want to complete.

This all brings me back to the ‘value’ of sudden death. Sudden death does have a very important feature: its suddenness. No time to think about it, no time to live in anguish, etcetera. Looks like I won’t have the luxury of a sudden death. Maybe I will, we never know, but the way it’s going now, it’s not likely. So I have to figure out another tactic, or set of tactics to deal with the uncertainty of my life but with the certainty of my imminent death.

Problem is my death is not just about me. Yes, it’s an intensely personal experience, but other people are involved. Is it fair for anyone to focus so much on having a good death that they ignore everyone around them? Is it okay to be completely selfish about our own dying?

According to this op-ed in the Los Angeles Times, dying at home, although it seems like a reasonable thing to do, entails consequences, especially for care givers, and especially when home support and respite care are not available. This op-ed provides me with a not-so-subtle reminder to get my living will done. I probably shouldn’t procrastinate on that one.

28 Moving on up.

So, I’m over the shock of my cancer diagnosis. It’s been four months, after all. That doesn’t mean I’m happy about it, but it does mean that we (and I have to include Carolyn in everything here) have moved on from the initial storm of emotions around the diagnosis to settling in for months of chemotherapy and complete disruption of our lives. We are moving into a new routine. Every day is almost predictable, at least for now. I can’t say that I’m bored at this point, but I certainly am getting restless. I’ve gone down to the studio a couple of times lately and poked around. I really do miss drawing and printmaking. I want to get back to them soon and I really want to finish a small sculpture I started last year. Problem is I’m so exhausted all the time.

Not all people with cancer have the same reaction to the disease itself nor to the chemo meds and the opioids. Not all cancer patients are anemic all the time and I’m told that not all experience a lot of pain or the exhaustion I’m feeling. Every cancer is different and close to two hundred types have been identified. Breast cancer is the most common followed by lung and prostate cancers although there are several different varieties of all three types of cancers. Multiple myeloma is very uncommon and is the rarest of the blood cancers. Lucky me.

This morning we saw the local oncology GP and he told us that everything is going well with my therapy but that for the third cycle starting tomorrow they will be punching up the cyclophosphomide (the main chemo med) to one hundred percent. I didn’t know this, or I forgot, but I haven’t been up to full dose on this chemical yet. The doctor said that they started me off slowly to ensure that I could tolerate the shit, but now they were going to have to ‘challenge’ me. I have no idea how that is going to affect the side effects I am inevitably going to get except to amplify them. Yep, that’s what I can expect, amplified side effects. Yum.

I also learned this morning that I have six more chemotherapy cycles before they can consider whether or not I’m in remission. That means I will know by late August or early September. Oh well, I didn’t want to do anything this summer anyway, now did I. The way I’m feeling at the moment, I’m thinking that I might be able to get out on some short excursions come the sunnier, warm weather, but laying about the back yard by the pond sipping a cold drink doesn’t seem so bad either. Today is the last day of my previous cycle and the best of the whole lot because I’ve had a bit of a ‘holiday’ from my meds. Tomorrow, I’m back in the trenches with full-blown cyclo, dex, and bortozemib. I had an infusion of zoledronic acid today too, that’s a bone strenghtening drug. It gives me a raging headache so I take a couple of acetaminophen to help deal with that.

I have to get back to the hospital in a couple of hours for a CT scan of my right femur and cervical spine area. My orthopaedic surgeon wants to check my cervical spine for any changes in my degenerative disk disease and arthritis, my other nemeses. He also wants to determine if the excavators in my femur are in any danger of breaking through the bone or not. I’ve been experiencing more pain in the area lately and he wants to stay on top of that. Good for him. I like his attitude.

Enough for now.