I taught university level courses in sociology and criminal justice for over 30 years but now I'm retired and at 72 was diagnosed with multiple myeloma, bone marrow cancer. This site is now a chronicle of my journey with myeloma.
Well, another festive season is in the books. This one was no different than many in the past with family, food, and drink (in moderation, of course) along with the requisite tree and lights. This year, however, the family arrived on the weekend prior to Christmas and stayed much longer than usual. That’s because our daughters, their husbands and children (one of our daughters carries the full responsibility for the production of our three grandchildren) wanted to stick around to spend some time with us. I love that they wanted to be with their sick old dad. They are such a delight to have around and I was very sad to see them go back home to Vancouver.
Wow, has my life ever changed over the past few months. I was diagnosed with multiple myeloma in early October, 2019, and since then I’ve been brought slowly yet inexorably into CancerLand. There’s no doubt that I had multiple myeloma long before the official diagnosis. The symptoms were clear in hindsight. It’s probably been well over five years. But it’s been only since November, really, that I’ve gotten my passport to CancerLand. I’m fully a resident now, brought into the institutional fold. That means frequent visits to the lab and to the hospital with calls to oncology nurses interspersed. I mean, I have a diagnosis! I’m legit! I have my badge and my pass to the ER.ª I’m not just another whiny patient going to see my doctor to complain about being tired. I’m a CANCER PATIENT!
Speaking of being a cancer patient, I’ve now completed my first course of chemotherapy. It lasted about a month. My stomach is bruised from subcutaneous injections of bortozemib and my brain is bruised by weekly oral doses of cyclophosphamide and dexamethasone as well as zoledronic acid infusions once a month. I’m subject to a true cocktail of poison. Oh well. I used to drink more scotch than was probably good for me on occasion and people sometimes refer to alcohol as poison so, there ya go. Poison for poison.
Now we wait. We wait for the results of lab tests on Monday and what the oncologist will tell us on Wednesday based on those results. Will I be continuing with this same cocktail? Are the numbers going in the right direction? Can I realistically expect remission in the next few months? What? What? What?
Tomorrow is my seventy-third birthday. That means I start working on my seventy-fourth year tomorrow. For a guy who thought at twenty years old that he’d never live to be twenty-six, I’ve done pretty well. I can’t complain about my life. I must say, though, that there are a few things I might do differently if I had to do them over again, but I don’t dwell on those things anymore. I don’t have time. I didn’t have time when I was twenty-six either, but I didn’t know that back then. Time has passed so quickly, it’s frightening. If I had been able to really understand when I was twenty years old how in the blink of an eye I would be seventy-three I might have taken some things more seriously and dismissed other things as unimportant. But that’s the way it goes. There may be some twenty year olds out there who understand how fleeting life is, but I haven’t met them. Trying to convince them of that fact is not going to be very fruitful so meh…
I haven’t put together a New Year’s resolution. Should I? Maybe I can resolve to stay alive this year. Is that good enough? I’ve realized that in my state of being, committing to a long-term project to save the world is probably overly optimistic, but a resolution to stay alive in 2020 is reasonable, I think. I just might be able to see it through too. Wish me luck!
*”Welcome to Cancerland.” (from “Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America” by Barbara Ehrenreich). The title of this post is taken from this book. Ehrenreich uses this title as an introduction to the way she became medicalized after having been diagnosed with breast cancer. Start reading it for free: http://a.co/3h6SgyT
ª I do have a pass to the ER. I have a letter of introduction to the ER staff from the BC Cancer Centre telling them that if I show up to the ER they have a number of tests to do stat! If my temperature goes over 38˚ C, I need to get myself to the hospital ER for a possible antibiotic infusion. An elevated temperature indicates an infection of some kind, something I don’t need right now.
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 firstname.lastname@example.org.
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.