I taught university level courses in sociology and criminal justice for over 30 years but I'm retired now. Still, I'll always be a sociologist, engaging in discussions about learning and teaching sociology, commenting on current events and offering book, video and website reviews.
[A note: I’m used to writing posts here of approximately a thousand words. Because I’m so fatigued with anemia and other conditions that affect my concentration, for the foreseeable future I’ll make my blog posts a little shorter. That way I will be able to continue writing and not tire myself out too much.]
I started the chemotherapy drugs, lenalidomide and dexamethasone last Thursday morning. I was to take one lenalidomide tablet and five dexamethasone, continue with the lenalidomide for three more weeks and five dexamethasone tablets every Thursday morning until they were done. Frankly, it was a relief to finally get going on a treatment for my multiple myeloma (MM), any treatment. Well, you know what they say about the best laid plans of mice and me. They never go according to plan, and this was not about to become an exception to the rule.
It must have been Saturday (I got a CT scan that day) when I noticed that my butt was getting really itchy. Well, naturally, I scratched it. I knew it isn’t a good thing to scratch an itch, but I just couldn’t help myself. The welts just got bigger and hotter and covered my whole midsection. I developed a slight fever. Carolyn, my very competent care aide spread some lotion on my backside and up under my armpits to relieve some of the itching. Damn good thing too because I was close to losing it.
Well, it turns out that the reason I developed this rash in the first place is that I happen to be allergic to my main chemotherapy drug, lenalidomide. Now, that’s not cool! Lenalidomide is an oral therapy drug, and for that reason is very convenient to take. So, it’s the weekend, I’m itchy as hell, but I persist in taking my chemo meds. On Tuesday, yesterday, I call the oncology nurse in Victoria who seemed quite concerned about the rash. She tells me that she would try to track down my oncologist to get some idea of what to do. My regular oncologist was out of the Cancer Centre at meetings but she tracked down his colleague who told the nurse to tell me to cease taking lenolidomide immediately. So, great. Here I am, not a week into taking my first course of chemo meds and now I can’t take them anymore! What the hell is that all about, universe?
I was pretty bummed out for a time there, but then I realized that this is not an uncommon turn of events in oncology. In fact, about 40% of people enrolled in the lenalidomide/dexamethasone regimen turn out not to be able to tolerate the drugs.
A Cancer Clinic receptionist called this morning to set up a telephone consultation with my oncologist for the 20th, next Wednesday. At that time I should learn more about my next course of treatment as well as what they learned from my last CT scan. Strangely enough, I also got a call from the hospital here in Courtenay telling my that I needed to call them and set up a second course of treatment. She mentioned lenalidomide and I said it’s unlikely that it would be for lenalidomide because in all likelihood, I’m allergic to it and I was told to stop taking it. I guess it takes a while for messages to get from Victoria to Courtenay and back. I soon learned to take all phone calls from the hospital or the Cancer Clinic with a grain of salt and usually wait for confirmation from a third source before moving on with anything.
In my next post I’ll address the fun topics of pain, hallucinations, and cold sweats.
I was going to write a post about the social triage that happens in emergency departments everywhere, and I will get around to that, but for now I have other more pressing issues to deal with. I’m intent on documenting my experiences with myeloma as completely as possible so, for the moment, that will be my priority for this blog. One strange thing that’s happened to me is that I have a recurring dream about the emergency department at the Royal Jubilee Hospital. More on that to come.
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 email@example.com.
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!
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.
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.]
No sirens or anything, but still. We drove to Victoria (I should say Carolyn drove to Victoria) last Wednesday for an appointment with an oncologist at the Victoria Cancer Clinic. Wednesday went well enough although I’m in severe pain and the stress is overwhelming. Despite my distress we had dinner at the hotel. That was great. The Inn at Laurel Point is a superb hotel and the staff is excellent.
On Thursday morning we got a cab (Carolyn wasn’t particularly interested in driving, parking, etc) to the Cancer Clinic which is right next to the Royal Jubilee Hospital. We waited for a bit then had a good appointment with the oncologist which lasted probably an hour and a bit.
After our appointment we decided to head into town to have lunch and do a little shopping. Big Mistake! Multiple Myeloma is not a forgiving disease and doing regular daily activities can be impossible. I was to find that out in spades. Instead of doing the logical thing and taking a cab back to the hotel I decided a walk would be good. Wrong! A walk is the last thing I needed. I was in severe pain by the time we got to the hotel. I lay down on the bed to see if I could dissipate the pain a bit and that seemed to work until I thought about getting up. Impossible! The pain was over the top, way over the top. Eventually I got out of bed by sliding off the end of it while in a critical state of pain. Well, a normal person might just have decided at that point to call an ambulance and get to the emergency department of the Royal Jubilee. Not me. I’m tougher than that, and way more stupid. So I took a schwack of T3s and went to bed. Hardly slept at all. We were supposed to drive home in the morning but that wasn’t going to happen. We called the oncology nurse and after a bit of discussion she told us to get an ambulance back to the hospital to get an MRI and to deal with the pain. So we called an ambulance and the paramedics came to our hotel room and got me on a gurney, etc., put me in an ambulance and took me to the emergency department. I think that will be the last time I let anyone talk me into going to emergency. I don’t blame the staff, they have their protocols, but the truth is I wasn’t there for a diagnosis. Nonetheless they took some blood (why, who knows) and had me sit in a waiting room with 60 or 70 other people. while I was in severe pain. Well, we were there for several hours. I got no pain meds for hours but finally got a CT scan, when what I needed was an MRI.
In any case, by the time I was in that black hole of an emergency department my pain was at a critical point so the ER doctor got me a hydromorphone drip and a prescription for hydromorphone. We got back into the truck but now had to stay another night because Carolyn can’t really drive after dark. Thankfully the Laurel Point Inn was able to accommodate us. I slept that night fully in the hands of my opioid angel. The hotel has a wheelchair which is good because by now I’m unable to walk because of the pain. In the morning we go downstairs, have some breakfast and then head for home. I knew that by the time I got home I’d be a basket case. More hydromorphone. Slept (I suppose we can call it that) when we got home. Now I sit here awaiting further instructions. I may have to get a wheelchair if I have to go any distance. The oncologist promises pain relief after I start chemo. I’m looking forward to that.