Looking in the Mirror.

When I look in the mirror I see an old man. I don’t see an old man with cancer. I just see an old man with a white beard, not much hair, and wrinkly skin. Melanoma (skin cancer) often leaves visible, sometimes unsightly and disfiguring lesions. I don’t have melanoma, although my father did. No, I have myeloma (bone marrow cancer) and its damage is all done on the inside, invisibly. So, I guess I can keep expecting people who see me say: “Wow, you’re looking good!” I guess I DO look good! Now, the last thing I want is to discourage people from telling me how good I look, so keep it up! However, the invisibility of my condition is deceiving. I remember when I was a kid my friends and I used to work on our cars. That was still possible when I was a kid. Often we’d stand around looking into the engine compartment (often of my 1956 Pontiac four-door hardtop) wondering what could possibly be wrong as if just staring at the engine would give us some kind of clue. The engine was always sparkly clean and there was nothing obviously gone awry. If I had money by some quirk of circumstance I might take the car to a mechanic. If not, we might borrow my dad’s tools and start taking things apart. That usually ended up badly. Yes, the most undesirable conditions in life are often on the inside, impossible to see or diagnose by just looking at the person or car in question. I find it best to consult mechanics when our car shows signs of disfunction. I find it best to consult medical specialists for treatment related to my body. I guess I could try to treat myself using any number of the ‘cures’ available on Dr. Google, but I would like to live a while longer, thanks. Besides, I’m not that desperate.

Speaking of medical specialists, we saw my local oncologist today. I see him every five weeks. The result of our visit is that I will carry on with a second course of chemotherapy. We’ll evaluate how well it went in five weeks. My first course of treatment seems to have gone as well as could be expected. The little excavator in my bone marrow is slowly running out of gas and my red blood cell garden is growing again. I’m still exhausted and that won’t change for some time yet, but things are certainly going in the right direction for now. I think I just might be a model patient. So, where does this all leave me?

Well, I may be on my way towards remission. If and when I do go into remission, and that’s by no means guaranteed at this point, that would buy me some time. By that I mean that I may have a few years more to live, though inevitably, either the myeloma will kill me or some other condition will. I won’t be walking away from this situation, brush the dust from my sleeves and carry on. No, I’m on a one way street. So are you, of course, but I can see that damned barrier at the end of the street. I’m hoping that you’re still far enough away from it that you can live in blissful denial for a while longer. I don’t have that luxury. So now what do I do with my life?

That question came up in a recent Facebook thread, albeit expressed in a different way, but with the same effect, I believe. The question comes down to this: If you knew that you had a given amount of time left to live (six months, two years, whatever), what would you do with your time? Would you to be seized by an overwhelming sense of urgency? Would you be determined to cram as much activity and experience into your remaining time as possible? Or would you curl up in a fetal position in a corner of your bedroom quivering and whimpering while you await your inevitable demise? If you have the money and the energy you might want to get out there and travel the world. If you have a spouse, that might complicate things more or less because they may not want the same things you do and may not want to get caught up in your sense of urgency. The last thing you need when facing terminal cancer is marital discord. I think there’s a lot to be said for just carrying on with life as before.

If you have the energy and the money then good on ya. If you travelled a lot before your diagnosis then travel after. Your eventual energy deficits will tell you when to stop. If you were fairly sedentary, more into being at home and puttering around the yard, then that would be something you might want to continue doing. The stress of travel may not be that good for you. Looking around the Cancer Centre at the North Island Hospital this morning I didn’t see a lot of people with obvious enough vigour to engage in a lot of physical activity. In any case, back to my situation.

My exhaustion prevents me from doing much in the way of physical activity. If I do go for a walk I pay for it later. Travelling is impossible. At one point I thought it might be possible, say, to take a direct flight to Puerto Vallarta back and forth from Comox, but there are a number of contingencies that make that next to impossible that have more to do with arthritis and disk degeneration than cancer. Besides, I take chemo drugs once a week orally but also by injection at the hospital. For three or four days after I take my meds I feel crappy, really crappy so the chances of enjoying myself on a beach somewhere are slim to none.

So what do I want to do, and what do I actually do? Well, I want to work on our canoe, finish some paintings, do odd jobs around the property and visit family and friends in Vancouver and further afield. What I actually do is sit and lie down a lot. As I sit and lie down, I read, and sometimes I even write. At the moment I’m reading social history around the Middle Ages and doing a bit of research on my family roots in Normandy. That’s something I would have done anyway, but I do miss working in my shop and studio and going for long walks with Carolyn and our imaginary dog. My oncologist thinks I will regain my energy, at least as much as an old man can expect. If so, that would be great. I’d love to get back to canoeing, camping and puttering.

When I get closer to dying I will know it, and I expect I will have time to think about it, but there really isn’t much thinking that is productive about dying, at least not for me. I’ll know when it’s time for palliative care. I don’t want to live as long as the oncologists might want to keep me alive. I’ll make the decision when the time comes. I don’t think it will be a really hard decision. I know that beginnings are impossible without endings. My ending is a lot closer now than my beginning! That’s fine. Frankly, I’m much more concerned with my family than I am with myself. They are the ones left behind to mourn. But both of my parents are dead and we got on with life after their deaths. My family will do the same when I’m gone. That’s what we do as humans. Like it or not, accept it or not, rage against it or cower in a dark corner, the end result is the same. Don’t sweat it.

Grinding It Out

My oncologist called this past Wednesday to discuss changing my chemo cocktail. The one I had been on for less than a week caused a very bad rash around my whole midsection along with a mild fever. So, I stopped taking that set of meds and am now waiting for word from the pharmacy here at the hospital telling me that my new meds have arrived. I’ve got appointments lined up for the first week of December, but I may be called to come in earlier. It’s all par for the course. Hurry up and wait.

Thing is, this new set of meds has caused some pretty significant side effects for a couple of people I know with myeloma. We’ll have to keep a close watch on symptoms, especially those related to peripheral neuropathy. Can’t say I’m looking forward to the new meds but then again, I’m not too sure what the alternatives would be. I’ve sometimes thought about what would happen if I turned down any and all chemo. I know that there are drugs that are more palliative than chemo and I seriously wonder how many more years of good quality life I could get out of benign neglect rather than with aggressive intervention. These are just things I think about late at night when I’m falling asleep along with visualizing my death bed.

I’ve been reading Barbara Ehrenreich’s book Natural Causes. She’s a couple of years older than me and had a malignant tumour removed from a breast some time ago. She’s fit, she’s healthy but she also writes that: “I gradually came to realize that I was old enough to die.” She means that she’s had a good life, a fulfilling life, which is much more than is afforded many of us. She notes that the military considers eighteen year olds old enough to die and that there is no ‘best before date’ stamped on our asses. Some political leaders lead well into their eighties and nineties. That said, there is a time, when we reach seventy or so years of age when our obituary is likely to read “died of natural causes” than anything else. At a certain age, she argues, there is no need for an explanation for dying. It’s okay to die. Of course we should expect to die. Dying is as natural as being born although we generally consider it a travesty and a high order insult to life. I visualize myself dying, but I’m not convinced that the visualization can ever be very accurate. The closest I can come to visualizing the end of my life is when I’ve had a general anesthetic. Under a general anesthetic, the first drug they administer puts one under, makes one unconscious. If that’s the way I’m going to go, I can live with that. I watched as they put our last dog Wilco down a year ago August. First the sedative, then the lethal dose of whatever it is that kills. That kind of end would be fine with me. If I have to do it, and I don’t see any way out, this is what works for me.

Pain is an entirely other matter. I’ve had too much of that in my life and I don’t want to die under a heavy blanket of pain. Some pain would be alright, but nothing overwhelming. No pain would be the best, but that’s asking a lot of this aging, crumbling body to deliver. So, I’m willing to compromise and accept some pain when my dying time comes. I watched my mother as she lay dying in her nursing home bed almost two years ago now. She had Alzheimer’s and was unable to communicate at all verbally. She did communicate her pain, however. She was under high doses of morphine but we could tell when the morphine would wear off because she would get more and more agitated. I have no idea what she was experiencing, but I have the strong sense that it wasn’t at all pleasant. I was not there in her room when she actually took her last breath but as my sister recalls it, it was all fairly anti-climactic. Chances are very good that I won’t follow my mother’s example in death. For one thing, with myeloma I’m not likely to live long enough, and for another thing, I’ll probably still be sentient and able to make some decisions myself about my own death, unlike what happened to my mother. My mother was a very fine mother, cheeky as all get out sometimes and able to maintain a sense of humour before some pretty daunting odds at times. Dementia robbed her of end of life quality of life. That’s a shame. One of my sisters died a few years ago. She was four years older then me and had lung cancer. She was sentient for most of the time or her dying, but I wasn’t there when she finally gave up her last breath. I was a ferry ride away and unable to make it. She died a half hour before I got to the hospice centre where she ‘lived’. I know one thing for sure. She was pumped full of morphine for some time before she died and that effectively shut down her ability to decide anything.

Lately I’ve been experimenting a little with my pain meds. I’m on a large dose of hydromorphone (not related to morphine- a lot stronger, actually) taking two 1mg pills every four hours. I tried to back off some and take a lower dose every four hours for a day. I felt I could probably manage that because my pain was pretty much under control. Mistake! My pain is under control because I’m taking shitloads of hydromorphone. When I tried to back off, pain started to come back in my neck, ribs, right pelvic area, legs and shoulders. I knew that if I didn’t resume my twelve mg pill load a day that I would soon be completely incapacitated and bedridden. The decision was a no-brainer, but I was hoping for a better outcome.

One of the issues, of course, is that I haven’t really started treatments yet for multiple myeloma. I’ve been diagnosed and all that, but I haven’t had any chemotherapy to mitigate the effects of the disease, so it may be that in a few weeks or months and I go into remission that I’ll be able to back off my pain meds successfully. Wow, that would be cool. For now, I’ll continue ingesting lots of hydromorphone and maybe indulge in a beer or two, maybe even a tiny bit of scotch. It’s okay, all my specialists say a couple of beer are ok. I didn’t ask them about the scotch.

One (or more) of my readers here have suggested that I don’t swear anywhere near enough in my narrative. Well, fuck that! I’ll swear if I want to, swear if I want to, swear if I want to. You’d swear too, if it happened to you! (Figure out the song this is based on). Fuck!

Today I write about pain.

Before I do that, however, I want you all to feel free to contact me. If you have problems with privacy i.e., you don’t want your comments to appear in public, please let me know when you post comments, or pm me on Messenger or you can email me at rogalb@shaw.ca.

Things can change very quickly these days and positive things do happen! Oh, I still have myeloma and I started chemo yesterday. That seems fine. The pain in my neck has attenuated too. Who knows why. I can feel it lurking around my cervical spine, but for now it’s keeping a respectful distance. I can actually type and stay relatively focussed. I pay for that by not taking as much hydromorphone. AND my kidney is back to normal…for an old guy like me anyway and that’s very good news. I was thinking I may need a wheelchair to get around and we were making arrangements for that, but for the moment, I’m good. I’m feeling okay at the moment, ten times better than I felt two days ago, but that’s how it goes with chronic pain. Things can easily go back to shitty in a flash. Of course I know that I’m an old guy with cancer and I can see the exit door over there just beyond the bright white light, but I can’t see the handle yet, so I think I have some time. Besides, I can put that to the back of my mind. It doesn’t help at all to focus on things I can’t inevitably change and stick to the things that can get me, and others, better quality of life now and for the near future.

So, pain. My last blog post was about Carolyn’s experiences at the Emergency Department here in Courtenay. My penultimate posts were about my visit to the oncologist in Victoria and my subsequent disastrous ER visit the following day. I sit here somewhat unable to piece together accurately in sequence what happened to me since last Wednesday. Truth is I’ve seen two specialists since then, have had a ct scan with another one scheduled for tomorrow which showed that I have severe disk degeneration in my neck that is, along with arthritis, creating the pain vortex in my neck. My neck pain has been a roller coaster of severity. I have a neck brace that helps with that too as you can see from the photo below. Hi!

My office

Now, this is where it gets interesting because my oncologist tells me that my neck pain has nothing to do with my myeloma. It has everything to do with my disk degeneration and arthritis. So, I ask: does the myeloma contribute at all to pain in my body? Of course it does, comes the answer. It attacks your bones. The ct scan did not find the right kinds of lesions on my cervical spine, so they were not the source of my neck pain. Well, okay. I guess I can go along with the argument that my nasty bulging disks are responsible. I mean I had surgery on my lower back decades ago to alleviate a ruptured disk problem so I’m familiar with that. Still, recently I’ve had over the top thoracic skeletal pain which really was caused by my myeloma so whatever. I’m getting a ct scan tomorrow to check that out among other things.

So, what I’ve been able to piece together through moments of excruciating pain and hallucinating sedation, is that the pain I’m experiencing the most severely seems to be concentrated in the bony/connective parts of my body that had already suffered trauma. I’m thinking specifically of the area on my left thorax where my kidney as removed, the lower back cervical area where I had a disk removed, the left heel where I had planers fasciitis, that sort of thing. My neck too and my shoulders where I had rotator cuff tears, both sides due to falls and long term overuse issues.

I started asking this question to whoever would listen: is there an association between myeloma and increased intensity of pain in areas of previous bone trauma? Answer: I don’t think so, but probably not. Question: Do you know of any research between myeloma and where it affects the body most? Answer: Not that I know of. I had a chat with my daughters about this. They’re no slouches when it comes to research: One of them works in the field of non-profit housing and the other in biomedical research. They are my truly trusted experts. But, I have access to a lot of material too because I’m still associated with North Island College as emeritus and have library privileges.

Okay, that still leaves me dealing with my own experience of pain and those of others (read the comment by Tanya Wood based on my last post), some of whom have chosen to remain anonymous. I’m especially concerned with Emergency Departments and with receptionists (gatekeepers) in GP offices who, I know are just doing their jobs, but who, when I call to simply ask that can the doctor just tell me if I can increase my dosage of hydromorphone says: “Well, the doctor will have to see you for that” To which I answer: I can barely move. I have excruciating pain and can barely get out of my chair. Can he just tell me quickly about increasing my already existing prescription with pills I already have?” “Well, no, the doctor will have to see you.” So, I couldn’t take anymore of that and told her we’d get back to them. Later, Carolyn called and talked to someone else who said someone would be in touch. My doctor called me later in the day when he had done his patient visits for the day, something he as often done in the past and I knew he would do again. So, all day I was left figuring out how many more hydromorphone pills to take before overdosing. I’m not at all suicidal, so that’s a concern. I’ve known of many people who have died from accidental overdoses. I wasn’t about to be one of them, but my pain was so intense it was a good thing I wasn’t standing at a subway station waiting for a train anytime last week. I may just have acted compulsively and jumped onto the tracks. Of course that’s a little hyperbole, but that’s okay among friends, isn’t it?

I wrote to Tanya Wood (who’s husband, Darren, died a couple of years from complications resulting from a tragic accident) in response to her heart wrenching comment that ER departments are microcosms of our culture. They operate using the same moral assumptions as everyone else in society. We have deep-seating cultural aversions to death and disease. Most of those are built on our huge biological insecurities. I paraphrase here Ernest Becker who wrote something like: Disease takes away our ability to enjoy the pleasures of life and death does that permanently. He calls death and disease the twin pillars of evil for us. [You need to read some of my early posts to get a sense of how brilliant I feel Becker was.]

So, in a sense, I’m not surprised at the cavalier attitude most staff members have towards people coming into Emergency departments everywhere. Don’t get me wrong. There are some very dedicated and caring medical staff working in ERs doing a mostly thankless job which, I’m sure, can be extremely rewarding at times too but the system is stacked against them and they will, I’m certain, be looking for different work soon if they don’t toe the line. And, of course, as I’ve already noted in a previous post that pain is invisible so ER staff can’t just take your word for it. Not only that, but if you come in really agitated that you’re in extreme pain and need some meds now they may tag you as a troublemaker and make you wait all that much longer for help. There’s a big screen tv in the ER waiting room at the Royal Jubilee Hospital explaining in great detail why you must wait and why. There are signs saying no foul language or threats or whatever will be tolerated. There are security people everywhere dressed just like police. I wonder what they would do if somebody with Turette’s Syndrome came in following a car crash or, as is quite common, some people can’t utter a full sentence without ‘fuck’ in it at least once. These people may just suffer from undeveloped communicative skills but they are probably not dangerous. The message is clear: if you want treatment here you had better stay calm, cool, and collected. Of course, precautions must be taken, but I’m not sure that blanket prohibitions are the way to do it.

Pain, in our culture, is associated with weakness and most people are loathe to talk about it even to the point of not seeing a doctor because they’re embarrassed about the location of their pain or don’t want to admit weakness. Weakness of any kind is just not acceptable. Do you see any weak superheroes in the movies? Well, some of them show some slight or passing weaknesses but they always triumph over them in the glorious light of their super strength. That’s in the movies. In Diehard movies the hero falls off of an eighteen storey building onto the top of a moving van below, rolls of of that onto the sidewalk where he encounters villains walking towards him shooting up a storm with their AR-15s (or whatever), gets hit, falls through the open door of a bar, sidles up to the bartender and asks for a scotch on the rocks. The young, gorgeous, female bartender gives him his drink and comments on the two gaping bullet wounds on his shoulder. He respond in true superhero in training fashion: “These, nah, just flesh wounds.”

Real heroes are immune to pain it seems so if you really want to be a superhero, boys and girls, don’t complain about pain!

Pain doesn’t kill. It’s a sign that something organic is out of whack and needs attention. Failure to attend to pain often results in dire consequences for the patient but any complaint of pain is not treated initially by medical staff as an organic issue, but rather as a moral one. We are all assumed to be moral degenerates unless proven otherwise by the cognoscenti. Of course that’s not true in every case, but the underlying assumptions are always there. Overlying all of this too is the assumption that there is an acceptable amount of demonstration allowed with different levels of injury. So, for a broken leg, some amount of whimpering is allowed, and for the pain I went in with some moaning and groaning is okay, but only when there’s movement happening otherwise sitting quietly is what’s expected. In any case they have a scale of acceptable pain demonstration. Don’t mess up their expectations and assumptions. But as I said, our reaction to pain culturally is really screwed up so you’d have to think that in an ER that would be doubly evident. It’s not right but that’s the way it is. Is there anything we can do about it? Maybe, but it’s complicated and requires a lot of knowledge and challenges to authority. Authority does not like being challenged. That itself is a challenge since authority has all the lawyers it wants to line up against you, often using your money. But lets poke the beast a little and see if it demonstrate any signs of weakness or pain.

I’m not dead yet, and I’m coming for you, VIHA, and related government departments and agencies. You’re trying to get rid of pathology services entirely in the North Island and that’s a travesty. Some of you in the business may need to retake your Hippocratic oath. More on this later. I need to do more research to know exactly what the situation is, but when I’m ready you’ll know about it.

So, for now, I’ve seen my oncologist, my kidney specialist, my pathologist and now I need to have my beer specialist on my team. I won’t be going out to see him anytime soon, but I heard he might just deliver. Damn, there’s so much more to say!

One of my previous posts about disability and people in wheelchairs. It might be of interest after reading this post.

Today I was going to write about pain, but I’m in too much pain to do it.

Maybe tomorrow I’ll be in less pain. I have a lot to write about my recent experience with pain but my neck pain is so bad right now I can’t look down and can barely move it from side to side. Tomorrow, I’ll try again. The docs found in a recent CT scan that I have severe disk degeneration in my neck. ‘They’ say that’s what causing my extreme pain at the moment and the pain cannot be attenuated by pain killers, including hydromorphone. I guess that cancer wasn’t enough for me.

In the meantime, as a bit of a primer, I’m reposting a blog post from earlier this year on the subject of pain.

The Conundrum of Pain…and Suffering: Part 1.

I’ve been thinking about writing this piece for a long time. It’s only now that I figured out how I wanted to organize my narrative. It’s complicated because there are so many aspects and approaches to both pain and suffering. The medical profession (and the medical ‘industry’) has its clear claim on the alleviation of pain and suffering. Philosophers and psychologists have also long been interested in the topic. Sociologists too. I won’t be quoting any sources this time. I will leave that for subsequent posts where I deal with specific scholarly and popular approaches to pain and suffering. To start, I want to suggest why I find pain and suffering of interesting.

Pain is not something that can be empirically determined. It cannot be objectively measured as far as I know. If you know otherwise, please let me know. That’s why doctors (MDs, that is) sometimes ask you: “On a scale of 1 to 10, how bad is your pain right now?” You answer: “Gee, I don’t know.” And you just throw out a number because it’s such a hard question to answer. You don’t want to say 2 because then what the hell are they doing in their office? You don’t want to say 10 unless you’re writhing in pain on the floor by the examination table. A 7 is usually good for attracting attention without getting ‘the look’. Still, your doctor may be wary.

You can look at anyone, I don’t care whether they have just been badly damaged in a car crash, they have arthritis, psoriasis, lumbago (don’t you just love that word?), and/or gout. You can impute that they’re in pain, but it’s not visible. Pain is not visible. You cannot see pain. It hides in the crevices, nooks and crannies of your body but nobody can see it so how do we know it’s really there? We may see a person with a massive slashing knife wound to the chest and we assume that person is in pain, but we never see the pain so we don’t have any way of determining its intensity or how much shock or other factors have mitigated or attenuated it.

Recently we (Carolyn and I) spent some time in a hospital emergency department because Carolyn needed an emergency appendectomy. All is much better now, but it was obvious that the medical staff was at a loss the first time we went to emerg (that’s what they call it, you know) to figure out what the cause of Carolyn’s pain might be. They may have even wondered whether or not her pain was psychosomatic. They poked and prodded her, took blood and did a CT scan. Nothing of significance was found. I don’t know what the staff thought at the time. They told her she was a conundrum and looked great on paper. In any case, we were sent home with instructions to take antibiotics, pain killers, etc. When over the next few days the pain got worse for Carolyn we went back to emerg after Carolyn was told by her family doctor that she had a classic case of appendicitis. After a few more hours sitting in waiting rooms and getting more tests including a second CT scan, it was determined that indeed, Carolyn had acute appendicitis (which we subsequently found out was evident on the first CT scan). Time for surgery for a ruptured appendix. This entire scenario was upsetting and did not need to happen. Surgery after our first visit would have been routine and we probably would have come home the same night. As it stood, Carolyn spent two days in the hospital recovering. Now, this was all nasty and everything, but I have questions about the presence of pain as Carolyn described it and the CT scan that showed an inflamed appendix. Did they operate because of the pain or because of the CT scan? The CT scan confirmed that there was an organic problem and the assumption that Carolyn was in pain may or may not have factored into the decision to operate. I’m not sure how that works.

Pain is not something that is determined objectively so how are medical personnel to know whether a person is in pain or is faking it? There are people out there who crave attention (or drugs) and will fake medical symptoms to get it. There are people who have what’s called indeterminate illnesses or diseases of indeterminate etiology like fibromyalgia. Some medical doctors and others associated with medicine still don’t believe that fibromyalgia is a thing. They argue that if only you’d relax, your pain would go away…that’s if you ever really had pain…wink, wink, nudge, nudge. It’s a tough call because pain is not visible. People may be grimacing and walking abnormally, and we assume they’re in pain, but we just don’t know for sure. There is probably more attention given to determining the etiology of pain in regular and emergency medicine than anything else. Guesswork has to play a major role along with targeted questioning. “Does it hurt here? No. Here? No. Then what about here? Okay, here then! Well then, we’ll just peel you off the ceiling now and figure out what to do for you. You will definitely need some painkilling meds. Get that IV hooked up. It’s certainly true that pain alone cannot trigger surgery. Just because I tell a doctor I’m in pain, that doesn’t justify her throwing me straight into the operating room. Subjective reports of pain must be supported by evidence of organic abnormality, or is it the other way around?

Killing pain is huge business. We don’t seem to like pain a lot unless we have a personality disorder and we’re masochistic. Big Pharma’s bread and butter is in killing pain. Opioids are huge business. They are used medically to mitigate physical pain symptoms, but they are also used on the street to deal with ‘psychic’ pain. [This is a topic for another blog post.]

Strangely enough, we often put ourselves through a lot of pain and suffering to accomplish a task that we’ve imposed on ourselves like running a marathon. Why run a marathon only to feel intense pain during and afterwards? What drives us to doing this kind of thing? [This is a topic for yet another blog post.]

Then, there are people, a very small minority, who cannot feel physical pain at all. They can put their hand on a hot stove element and not know that they are in trouble until they smell flesh burning. That’s not a scenario that appeals to me at all. In view of this it’s common to consider that pain has benefits in an evolutionary sense. It’s probably a damn good thing that we do feel pain. Too bad our pain is not obvious to others in an objective way. It would make life a lot less painful for a lot of us.

[Stay tuned. I learned today about myeloma and pain. I also learned that my kidney is fine and I can have beer and wine again.]

I’m a Cancer Survivor but I won’t be a Life Survivor.

It seems odd for me to describe myself as a cancer survivor. Oh, I had cancer, alright. In 2002, very early in the year, I was diagnosed serendipitously with kidney cell cancer. I had gone to see my GP about acid reflux so he sent me to to the hospital to have an ultrasound to check it out. The ultrasound tech wasn’t looking for anything in particular is my guess, but she zeroed in on my left kidney and sure enough there was a lesion there that they strongly suspected was kidney cell cancer. The techs didn’t tell me that, of course. They don’t discuss the results of a scan with patients in my experience. My GP was the one to break the news to me. His office called me to tell me the doctor wanted to see me at 5:30 the following day. I didn’t think much of it at the time, but in hindsight, that was an unusual thing for my GP to do. In any case, he broke it to me and said that the best chance of a full recovery for me was surgery as soon as possible. Then he sent me off to see the urologist who would perform the surgery. They didn’t perform a biopsy they said because of the fear of spreading the cancer which at that point was restricted to my left kidney. Fair enough.

So, after all the preliminary tests were done and I had seen the surgeon and the anesthesiologist my surgery was scheduled for the third week of February. Normally, of course, I would have been teaching at that time, but that wasn’t going to happen so the college arranged for subs on very short notice, one of whom was to die of cancer a few years later. The thing is that there are no obvious symptoms with kidney cell cancer. As far as I know, it doesn’t usually affect kidney function, so my kidneys didn’t show any signs of stress or disease. I felt fine. I did some work around the property. It so happened that we were just in the process of buying a new place in Cumberland, BC when I was diagnosed. There was a lot to do. We had an acre of property with the house and several outbuildings. It was a good thing that I wasn’t particularly debilitated. That was to come later.

Needless to say, a cancer diagnosis is traumatizing for everyone involved. I was concerned for my family as much, if not more, than for myself. Strangely, I was convinced that this cancer wouldn’t kill me so I was pretty upbeat about the whole thing. Why I felt this way I have no idea. It could be I was in denial. We humans are great at denial, even me.

Finally, I had my day in the operating room. I arrived at the hospital with Carolyn early in the morning with hardly anyone around. We said our goodbyes and I was taken to the pre-op area. They didn’t waste any time getting me ready and into the operating room. That I remember. My GP was in attendance and assisting, although I didn’t see him in the operating room at the time. Later, my GP told me that the surgeon had cut me in half laterally on my left thoracic area so that the kidney could be gently lifted out helping to keep the cancer contained. He said it was quite daunting. That’s what happened. Since then I’ve made do with one kidney. One of my former students was a nurse in the OR. We joked around until the anesthetic kicked in. Having a former student in OR isn’t unusual because many of my students were in the nursing program and were taking my sociology courses as electives. It happened again last year when Carolyn went in to have her appendix removed. My former students are everywhere!

I tell you all of this so you get a sense of what I mean when I say I’m a cancer survivor, but I find it hard to describe myself as such. I think of cancer survivors as people who have had to struggle for weeks, months or years on chemo and/or radiation, losing their hair and being in horrible pain the whole time. I have known many people who have succumbed to cancer, but I also know a number of people who have fought it, and fought it valiantly for long periods of time and survived. My cancer recovery was not at all long and drawn out. The surgery put an end to it. Done. Well, mostly done. My surgery was seventeen years ago and my left thoracic area has been a source of constant pain since then, aggravated often by the slightest movement. The pain in my side never lets me forget about the cancer that almost claimed my life. It gets pretty tiresome at times and saps my energy, but I carry on because what else is there to do? No, suicide is not an option.

So, I guess I’m a kind of cancer survivor, but I won’t be a life survivor. No one has ever been, nor will anyone ever be a life survivor. Nothing can ‘cure’ us of death. My surgery has allowed me to live longer and that’s fine, but I’m still in line for dying. And that’s fine. I don’t have any illusions about life and death. Life demands death. Life cannot happen without death. Denying that gets us nowhere. So, every day is one more day to enjoy and struggle over. When it’s done it will be done. That’s it. I know that some of you might think it odd that I say it, but if I had died on 2002, that would have been fine too. Carolyn and my family would have been sad and would have mourned my loss, but they would have gotten on with their lives. That’s what we do when people close to us die, we get on with our lives until our turn comes.

The Agility of Suffering.

So, it’s almost September and time to get writing again. I haven’t been particularly active over the summer, but now I’m working up to a regular schedule of reading and writing.

It’s been an interesting summer, hot and dry with heavy smoke in the air at times. Wildfires still burn on the north end of Vancouver Island. And there’s been pain. Lots of it for Carolyn with her appendectomy and arthritis and me, well I suffer from chronic pain. I’m now seeing an amazing physiotherapist and it could be, it just could be, that I will find some relief from the pain that has plagued me for years around my shoulders, back and neck. I don’t believe there’s much that can be done about the pain that I still suffer from around the sites of past surgeries, one that removed a kidney and another on my lower back. I can deal with all the pain although it does make me cranky from time to time as Carolyn can attest, and it can drain me of energy.

I recently wrote about pain in this blog. I focussed specifically on the invisibility of pain and the fact that an individual’s pain is always assumed rather than demonstrated empirically. That is to say that if you break your leg in a biking accident, the medical professionals can easily ascertain the reality of the fracture, but the pain you would surely feel would not be evident, nor clearly measurable. When I got my left kidney removed in 2002 to excise kidney cell cancer, the general assumption was that I would have some pain. That assumption was correct and I was dosed with morphine to try to mitigate the pain. It worked, but years later I still feel the need now and again to take a T3, or Tylenol with codeine for the pain. The pain in my side from the surgery is still very real although the experts at the pain clinic at the Nanaimo General Hospital’s Pain Clinic were convinced when I was a patient there a few years ago that the pain comes from my brain and not from my side.

The pain your doctor acknowledges you must be feeling after surgery or a broken leg can only be measured subjectively, on a scale of 1 to 10, say. Some people, one in a million according to a couple of websites I consulted, cannot feel pain and their lives are extremely hazardous because of it.  Apparently, we need pain. It warns us of underlying problems and issues. It urges us to seek relief and balance.

Without any hard evidence, I hypothesize that people experience pain idiosyncratically. That is, some of us may be highly sensitive to pain while some of us are more or less inured to it. That goes for physical as well as psychic pain. In my next post, I want to address the issue of the amount of social, individual and economic resources that go into pain detection, management, and alleviation.

In this post I want to move away from pain somewhat to consider suffering. Suffering, although most people can agree on a general definition of it as generalized and sustained pain, has been vilified as a great social evil or hailed as the way to eternal life, in fact, the only way to eternal life. In a short blog post I cannot begin to summarize the importance that the concept of suffering has had (and still has) in human history. It is a concept that infuses so much of our existence and our attention. And it’s used in so many ways, hence its agility.

According to Friedrich Nietzsche, “To live is to suffer, to survive is to find some meaning in the suffering.” It’s worth dwelling on this quote for a bit. What does it mean “to live is to suffer”?

Well, I surmise that it may have to do with how we define suffering as essentially being unable or unwilling to change something. If I say, “I don’t suffer fools gladly”, that means that I won’t put up with their crap. Most people suffer fools silently as is sufficiently demonstrated in the U.S. at the moment. I suffer pain, but some people suffer loneliness (or the inability to form meaningful relationships with other people). Some suffer success (or the inability to accept the fact that they stand out). Some suffer fame (of the inability to accept the attention paid to them by larger numbers of people). To ‘put up with’ pain means to suffer pain. To suffer means to be blocked, to be unable to move to change or alleviate distress or pain, to lose control. To suffer means to be unable to accept life and death.

Shakespeare has Hamlet say in a famous soliloquy: “Is it nobler in the mind to suffer the slings and arrows of outrageous fortune or to take arms against a sea of troubles and by opposing, end them?” Hamlet must answer this question for himself. Should he silently put up with disloyalty and nastiness in the family or stand up and fight? Neither option is great, but Shakespeare’s meaning is clear.

So, how does this relate to Nietzsche’s aphorism? The way I read it, Nietzsche is saying that life is a process of helplessly awaiting death. Shakespeare gives Hamlet a choice between two paths. Life doesn’t do that for us. There is only one possible outcome when we are born. We suffer in waiting for our final breath. We can do nothing about it. We are helpless in the face of it. That is a basic definition of suffering. Of course, us humans with our big brains were not going to accept that fate, so we invented a myriad of cultural ways of denying death, of convincing ourselves that for us, death doesn’t exist.[1] Baptism is one ritual specifically designed to thwart death. Baptism, for believers, welcomes the initiate into a possible eternal life.

One of the more deleterious consequences of this obsession with denying death is the conclusion that any one group’s death denying immortality projects must be exclusive. Simply put, if my immortality project promises me eternal life, then yours must be a lie and must be defeated to prove it. A vivid example of this is congruent with colonialism. Christian missionaries who accompanied European traders, explorers and exploiters in the early history of the global spread of capitalist production considered it their duty to extinguish indigenous belief systems, forcing locals to adopt Christianity or face extermination. To a large extent, they succeeded although vestiges of indigenous immortality projects have survived to this day and are sometimes rallying points for indigenous cultural, social and economic revival.

For religious folk, suffering is a big deal. Christians and Jews are intimately familiar with suffering having been condemned to it in this mortal coil because of the follies in the Garden of Eden. In contrast, suffering is endemic to life as Thomas Hobbes maintained just because it is, history proves it. Jordan Peterson, a contemporary pop philosopher not remotely in Hobbes’ league, also finds that suffering is the essence of life as is brutality. He is not ‘religious’ himself, but he does support the religious view that suffering is essential. For Peterson, it is an indispensable element of human psychological growth.

It would be ridiculous to suggest that suffering is not an essential part of human and other sentient life. However, unless we agree to dwell on one end of the continuum of human suffering and human bliss, or accept the idea that life is itself suffering, we must accept that suffering is always contingent, conditional and situational. Life is not endless suffering for everyone. We are capable of moments of glee, pain free activity, both physical and psychic (or mental). Yes, we live and we die, but acceptance of that fact can alleviate much suffering.

Many religious folks, not just Christians by any stretch of the imagination, are focussed on arriving at that acceptance by denying earthly death. They defy their helplessness before death by handing over control over their lives to whatever god or deity they chose to create for themselves. Not all of us share in that type of denial. Those of us who are irreligious have to accept the fact of biological death like we accept the fact of biological life because, in fact, they depend on each other. Life cannot exist without death.

So, suffer away folks. As I write earlier in this blog post, I suffer from chronic pain. I’d like it to go away, but it’s not likely to happen. That means I have a choice to make, just like the choice Shakespeare gave to Hamlet. I can either suffer the slings and arrows of outrageous fortune or fight on until there is no more fight left in this old body of mine. I’m not particularly good at suffering slings and arrows, so I guess I only have one option left. That really simplifies life.

 

 

 

 

 

[1] For a thorough analysis of death denial there is no better source in my mind than Ernest Becker’s The Denial of Death, available on Amazon or better still, order it from your local bookstore.

The Conundrum of Pain…and Suffering: Part 1.

I’ve been thinking about writing this piece for a long time. It’s only now that I figured out how I wanted to organize my narrative. It’s complicated because there are so many aspects and approaches to both pain and suffering. The medical profession (and the medical ‘industry’) has its clear claim on the alleviation of pain and suffering. Philosophers and psychologists have also long been interested in the topic. Sociologists too. I won’t be quoting any sources this time. I will leave that for subsequent posts where I deal with specific scholarly and popular approaches to pain and suffering. To start, I want to suggest why I find pain and suffering of interesting.

Pain is not something that can be empirically determined. It cannot be objectively measured as far as I know. If you know otherwise, please let me know. That’s why doctors (MDs, that is) sometimes ask you: “On a scale of 1 to 10, how bad is your pain right now?” You answer: “Gee, I don’t know.” And you just throw out a number because it’s such a hard question to answer. You don’t want to say 2 because then what the hell are they doing in their office? You don’t want to say 10 unless you’re writhing in pain on the floor by the examination table. A 7 is usually good for attracting attention without getting ‘the look’. Still, your doctor may be wary.

You can look at anyone, I don’t care whether they have just been badly damaged in a car crash, they have arthritis, psoriasis, lumbago (don’t you just love that word?), and/or gout. You can impute that they’re in pain, but it’s not visible. Pain is not visible. You cannot see pain. It hides in the crevices, nooks and crannies of your body but nobody can see it so how do we know it’s really there? We may see a person with a massive slashing knife wound to the chest and we assume that person is in pain, but we never see the pain so we don’t have any way of determining its intensity or how much shock or other factors have mitigated or attenuated it.

Recently we (Carolyn and I) spent some time in a hospital emergency department because Carolyn needed an emergency appendectomy. All is much better now, but it was obvious that the medical staff were at a loss the first time we went to emerg (that’s what they call it, you know) to figure out what the cause of Carolyn’s pain might be. They may have even wondered whether or not her pain was psychosomatic. They poked and prodded her, took blood and did a CT scan. Nothing of significance was found. I don’t know what the staff thought at the time. They told her she was a conundrum and looked great on paper. In any case, we were sent home with instructions to take antibiotics, pain killers, etc. When over the next few days the pain got worse for Carolyn we went back to emerg after Carolyn was told by her family doctor that she had a classic case of appendicitis. After a few more hours sitting in waiting rooms and getting more tests including a second CT scan, it was determined that indeed, Carolyn had acute appendicitis (which we subsequently found out was evident on the first CT scan). Time for surgery for a ruptured appendix. This entire scenario was upsetting and did not need to happen. Surgery after our first visit would have been routine and we probably would have come home the same night. As it stood, Carolyn spent two days in the hospital recovering. Now, this was all nasty and everything, but I have questions about the presence of pain as Carolyn described it and the CT scan that showed an inflamed appendix. Did they operate because of the pain or because of the CT scan? The CT scan confirmed that there was an organic problem and the assumption that Carolyn was in pain may or may not have factored into the decision to operate. I’m not sure how that works.

Pain is not something that is determined objectively so how are medical personnel to know whether a person is in pain or is faking it? There are people out there who crave attention and will fake medical symptoms to get it. There are people who have what’s called indeterminate illnesses or diseases of indeterminate etiology like fibromyalgia. Some medical doctors and others associated with medicine still don’t believe that fibromyalgia is a thing. They argue that if only you’d relax, your pain would go away…that’s if you ever really had pain…wink, wink, nudge, nudge. It’s a tough call because pain is not visible. People may be grimacing and walking abnormally, and we assume they’re in pain, but we just don’t know for sure. There is probably more attention given to determining the etiology of pain in regular and emergency medicine than anything else. Guesswork has to play a major role along with targeted questioning. “Does it hurt here? No. Here? No. Then what about here? Okay, here then! Well then, we’ll just peel you off the ceiling now and figure out what to do for you. You will definitely need some painkilling meds. Get that IV hooked up. It’s certainly true that pain alone cannot trigger surgery. Just because I tell a doctor I’m in pain, that doesn’t justify her throwing me straight into the operating room. Subjective reports of pain must be supported by evidence of organic abnormality, or is it the other way around?

Killing pain is huge business. We don’t seem to like pain a lot unless we have a personality disorder and we’re masochistic. Big Pharma’s bread and butter is in killing pain. Opioids are huge business. They are used medically to mitigate physical pain symptoms, but they are also used on the street to deal with ‘psychic’ pain. [This is a topic for another blog post.]

Strangely enough, we often put ourselves through a lot of pain and suffering to accomplish a task that we’ve imposed on ourselves like running a marathon. Why run a marathon only to feel intense pain during and afterwards? What drives us to doing this kind of thing? [This is a topic for yet another blog post.]

Then, there are people, a very small minority, who cannot feel physical pain at all. They can put their hand on a hot stove element and not know that they are in trouble until they smell flesh burning. That’s not a scenario that appeals to me at all. In view of this it’s common to consider that pain has benefits in an evolutionary sense. It’s probably a damn good thing that we do feel pain. Too bad our pain is not obvious to others in an objective way. It would make life a lot less painful for a lot of us.