myeloma

19 Fuck cancer!

~ Roger JG Albert ~ 2 Comments
Fuck Cancer mugs

[WARNING: this post contains references to visualizations some might consider offensive, and I regress to being a potty-mouth. Be forewarned.]

I’m not feeling particularly creative, effusive or positive today. In fact, I’m feeling hard done by, angry and unhappy. Hence the title of this post. In fact, I’m feeling fucking crappy, as crappy as ever, or even more so, because for the last three weeks or so I’ve had a cold to compound the effects of my myeloma and the chemo meds I’m taking. Most of the time all I’ve been able to do is sleep, or stare out the windows.

We just came back from the hospital an hour or so ago. Carolyn had to shovel huge piles of snow blocking our driveway and covering our truck just to get us there. Carolyn is my warrior! At the hospital, I got an injection of bortezomib (a proteasome inhibitor) into my abdomen and an infusion of zoledronic acid (a bone strengthening drug that has not-so-fun consequences for my kidney). They gave me 4 grams of zoledronic acid rather than the 3.5 I got last time. I have no idea why. They have a complex formula for deciding how much to give me including my weight and my lab results. Now, I’m just waiting for the chemo meds to kick the shit out of me as they surely will. At least dexamethasone gives me a bit of a boost of energy allowing me to carve a few words onto this ‘page’ out of my weary brain. The sculpture I’m carving I don’t feel is particularly elegant or fine, but my tools are dull so it’s what you get.

Do you like the mugs? Carolyn had them made by a very talented potter in the Valley who had previously made a set of mugs we bought from her that resemble these a lot except for the swear words.

Yeah, fuck cancer! I’m so sick and tired of being sick and tired! And now, to compound my shit, I have to worry about peripheral neuropathy. [I have complained about this before, but read about it again for fun.] I’ve had peripheral neuropathy for some time, many years actually. Peripheral neuropathy (PN) is a condition where the peripheral body parts, arms and legs to be precise, get to feeling numb, painful, and full of weird sensations like having bugs crawling all over them (something I’m feeling a lot at the moment). One of the side effects of the cocktail of chemo meds I’m taking is peripheral neuropathy. Left untreated it can lead to immobility, loss of sensation and life in a wheelchair. This is one of the nasty side effects of my meds, one that has forced a friend of mine who also has myeloma off this particular cocktail that’s often referred to as CyBorD. I’ve written about this before. I have to keep a close watch to determine whether or not the symptoms of PN are getting worse or not. It’s just one more thing to keep my mind occupied with my illness. Fuck cancer!

Did I say Fuck Cancer? Right, I did. And I mean it. I’m not sure what else I would prefer to die from, but cancer is not the companion I would have wished for on my way to the crematorium. Maybe a six-ton weight falling from the sky onto my head would be preferable, I don’t know. I have no way to assess the quality of various means of dying nor the means of communicating the results of any research I might do on the subject to you after the fact.

I may have already written about this…remember that brain fog is a classic side effect of anemia and myeloma, repetitiousness and forgetfulness probably are too… I read somewhere that an artist was asked if he wanted to be cremated or buried after he died. Instead of answering as you or I might he replied: “Surprise me!” Yeah, that’s the way I feel about it. I won’t be around to give a shit one way or another, but I have said I want to be cremated. I have had too many nasty dreams about being buried to want that as an option. Now, though, I’m starting to have moments when I visualize the crematorium attendant pushing my body into the furnace and my skin starting to cook like a pig on a spit as the fire gets hotter and hotter. I know, it’s gross and morbid. Sorry for bringing it up.

So, to change the subject, I’ve had a few moments of lucidity lately between bouts of feeling really nasty because of this cold, and I’m reading (in bed) about my ancestors here in Canada. My family goes back a long way as immigrants to Canada, back to early in the 18th Century actually on both my maternal and paternal sides. I’m finding out that my Norman ancestors called LeGuerrier (the warrior in French) were very likely actual warriors. A thousand years ago the Normans were highly trained and fierce warriors. They not only conquered England in 1066, but (I’ve just read) also became rulers in Sicily after they were invited there to help deal with an enemy. According to a book I’m reading they were often called on as mercenaries. One of the Norman rulers in Sicily was called Roger. His son Roger II took over after Roger I died and he was not known for his tender generosity. Roger that! In any case, the first Leguerrier in Canada can be traced back to 1748. He came earlier than that, but that date is the first mention of him in ‘the books’. He died a fairly old man. Infant mortality was very common then but so was death at any age. From what I’ve been reading living to reproductive age almost seems to have been the exception rather than the rule. These days I’m thinking about my ancestors, their lives and their deaths, and my place in the lineage. My grandpa Leguerrier died at the age of 76 in 1975 from stomach cancer if I remember correctly. My father died in 2007 at 96 years of age. We all come and go. Some of us live longer that others of the same generation but in the case of my grandpa Leguerrier and my father who were only fourteen years apart in age, I think I prefer to follow my grandpa’s lead because my father died after years of very poor quality of life, unable to feed himself because his hands were so distorted by arthritis. He was deaf, had been for years, and he was either in bed or in a wheelchair. To make matters worse, my mother had severe dementia and didn’t even recognize him on his deathbed. She was heard to point to him and say: “Who is that old man in the bed there anyway?” My mother died two years ago at 94 years of age. I can’t imagine she knew she was dying at the time. I’m not sure she knew that she was alive. Hey, wait a minute…

18 Looking in the Mirror.

~ Roger JG Albert ~ 4 Comments

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.

17 Welcome to CancerLand* AND Happy Birthday to me!

~ Roger JG Albert ~ 2 Comments

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!

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*”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.

16 I meditate on my last breath.

~ Roger JG Albert ~ 8 Comments

Yesterday afternoon Carolyn tucked me into bed. The zoledronic acid infusion I got Thursday at the hospital has left me feeling like I have a nasty flu combined with a smashing hangover. I fell asleep almost immediately but when I woke up I could hear the rain beating on our metal roof. I love that sound. Today, the dexamethasone is kicking in and it’s leaving me in a state of nervous fibrillation. I’ve never done speed, but I expect the sensation must be something like that. Now is a good time to write because I have this bizarre energy that needs an outlet. However, the dex gives me the shakes making it difficult to keep my fingers singly on the keys of my computer.

So, getting back to yesterday afternoon. Like I said I slept for some time and woke to the sound of rain pounding the metal roof. I just lay there. I find that lying in bed staring at the ceiling is not a bad way to pass the time. I could never do that before. I had the work ethic really bad when I was still gainfully employed and long after truth be told. Now, my body has taken charge of my reluctant mind and has forced me to sit still, to lie down and not feel guilty about it. Cancer has its upsides I guess, but I’m not sure that I fully subscribe to its methods. One thing for sure: There is no normal in my life anymore: sleep times vary, meals are still on schedule as are the ritual pill taking, but I can’t count on feeling the same way during each new cycle of chemotherapy that I felt on the previous one. Dex is predictable but the intensity of its effect varies. I only have to take it one more time on this course of chemo lasting until January. I start taking it again in late January when I start my second course of chemo with my fifth cycle. A course of chemo lasts approximately four weeks, a cycle, one week. At least that’s the pattern now. But I digress.

I’m lying on my bed focussed on the cedar beam that crosses the ceiling in the middle of our bedroom, light pouring in from the three windows just behind me at the head of the bed. I close my eyes and think about death. Well, more about dying than death, actually. It’s the process of dying that is absorbing me, not death itself which for too long we’ve considered the opposite of life. Dying is another thing altogether. Dying is the separation of consciousness and body. Consciousness in my estimation comes to an end at the point of death but my body, this collection of matter brought together by processes millions of years old, will immediately begin to become unglued. It loses its integrity as a collection of cells and begins to decompose, that is, to lose its composition.

I don’t have to tell you this. It’s hard to live for any length of time without coming across at least one death in the family, among friends, or by reading the news or obituaries on the local papers. We know about death although we don’t quite know what to make of it or how it pertains to us. It’s strange that for most of us we take for granted that ‘we’ don’t exist before our conception and birth and that ‘we’ become ‘we’ by a combination of hereditary traits, learned behaviour, and environmental factors. ‘We’ or ‘I’ are constructs. We are not born fully operational. We become ‘I’ over time, slowly developing personality traits, habits, and idiosycracies that define us as unique individuals. But we resist very strenuously the idea that if we come we must also go. But I digress again!

So, I’m back in my bedroom, lying on my back on my bed in that state of half sleep, very relaxed and I meditate. I meditate on my last breath. I’m thinking that dying is not much different than living. When we fall asleep and lose consciousness we have no idea whether we will awaken or not, we just take if for granted that we will. I’ve had two brothers-in-law die this past year. One died during the night in bed next to my sister. We say he died in his sleep. True enough. He wasn’t conscious when he took his last breath. Neither was my mother who died nearly two years ago, but she had demential and was so hopped up on morphine that I can’t say she died in her sleep. My sisters were there at the moment of her death. I missed it by a few hours. I was in pretty bad shape myself two years ago with symptoms on myeloma that went undiagnosed at the time. I was perennially exhausted, in a great deal of pain, and I couldn’t stand the vigil as my family surrounded my mom’s death bed waiting for her to take her last breath. I prefer to think of my dying as just another falling asleep kind of experience. My last one of course, but still.

Needless to say, there are only one or two ways of being born that I know of, but millions of ways to die. I like to think that my last breath will be in the comfort of home or at least in a hospice, somewhere nice. Many, many millions of people worldwide don’t die under such benign circumstances. Violent death is common. Five thousand Canadians die in vehicle crashes a year, fifty thousand Americans meet the same fate. I don’t fancy that as a way of dying, but if it’s quick, maybe. I can’t imagine being hacked to death with a machete after watching my family meet the same fate in 1994 Rwanda, or being shot by a stray bullet in Aleppo leaving me wounded and watching the blood spill out of me. No, give me a peaceful, quiet place to die.

I’ve been diagnosed with an incurable cancer but I’m told that it’s more like a chronic treatable condition than a CANCER that kills fast and unannounced. I’ve got some time to think about my last breath. I’m not sure if that’s good or bad. Certainly, I’ll roll with it. I remember clearly when I was a kid of twenty or so. I had a fairly serious back injury while working at a sawmill on Lulu Island and I needed back surgery to remove a disk in the lumbar area of my back. I was a kid in search of meaning in my life, not such an unusual thing. I remember lying in my hospital bed after the surgery, hanging over the edge puking my guts out and thinking to myself. I can milk this for everything it’s worth. I could stay on Compensation for a long time then go on disability or something along those lines. Or I could get out of the hospital and use this time to get my shit together. And that’s what I did. I got my shit together. I enrolled in the liberal arts program at Douglas College in New Westminster and never looked back. My injury allowed me time to think about my future without the pressure of work. That was luxurious, and it worked.

Now, I don’t need to get my shit together. It’s been together for a few decades and I’m happy with my shit. My encounter with cancer, in a way similar to my experience with my back surgery, is giving me time to think about my last breath, but to also remember that every breath I take until my last one is worth paying attention to and celebrating. Whatever I do until I take my last breath is not so important. Of course, I can’t help but do something and I will do things that have always mattered to me. It’s impossible to do nothing and still be alive. Even lying on the couch ‘doing nothing’ is doing something. Whatever I do will be the right thing at the time because it will be what I do. In any case it won’t matter one iota after I’m dead because ‘I’ won’t be around to care or experience regret or any other sentiment.

15 Access to medical records

~ Roger JG Albert ~ 4 Comments

It is shocking to read on the CBC News today that LifeLabs has been hacked with an ensuing leak of information on 15 million LifeLabs customers including email addresses, passwords, medical records, et cetera. This is not good news. LifeLabs is a private medical laboratory business that has provided employment for members of my family and which is reputable, and generally reliable. It’s seriously unfortunate that the breach of information has occurred but it’s obvious (if implied) from the news source that it was a case of cyber blackmail, something that can easily happen to any company.

I had LifeLabs online access to my medical records years ago but in the last few years I’ve used VIHA (Island Health) labs exclusively, mostly the lab in Cumberland. Very convenient. Last time we were there (on Monday morning) the tech turned us on to MyHealth which is a new (to us anyway) service to allow patients access to our own medical records including lab and imaging results. This service is equivalent to the service offered by LifeLabs. It’s very comprehensive and I love it. We were able to access online records of our Monday morning Cumberland lab visit by early in the afternoon! Spiffy! So, I have an appointment with my GP tomorrow and I’ll already have looked at all my numbers and will be able to refer to them intelligently with my doctor. Carolyn and I have done a fair bit of research on myeloma, my bone marrow cancer, and understand what the numbers mean to some extent. Because I have only one kidney, the creatinine levels in my blood are of particular interest to us. They measure kidney function, something that can be impaired by myeloma but also by the chemo drugs I’m taking. My numbers show that my kidney is almost functioning normally again! Have a look at the graph below.

For an old researcher like me this is exciting, especially since it’s about my own blood work! Referring to the graph, you’ll see that on January 25th 2017, my creatinine level was 106 umol/L (which means micromoles per litre). That is above the reference range (60-100 mol/L), but not terribly so. Now see what happened in April 2018. There was a slight jump in my creatinine levels, but that was just the start of things going really wonky. By May of 2019 my creatinine levels began to spike up. In late September and during October my creatinine levels were all over the map. I think the radical drop from 134 to 103 umol/L from October 25th to the 29th was very likely because of a prednisone infusion on October 26th. On December 2nd, my creatinine levels were at 137 umol/L and by two days ago on Monday had dropped to 110 umol/L, almost back to normal.

This graph only goes back three years. If it went back further you’d find other times when I had spikes in my creatinine levels, not surprising since I lost my left kidney to cancer in 2002. For instance, in 2008 I went in for a blood test (not shown on the graph) and my creatinine levels were 114 umol/L, (within the reference range which at that time was 70-120 umol/L and not the 60-100 umol/L that it is now. Why the reference range changed, I have no idea). That probably wasn’t a spike, but it shows that my creatinine levels were generally above the reference range or very near it.

What I find really interesting about this graph is that I seem to be able to see immediately the effects of certain treatments on things like creatinine levels. I’m now definitely in a better position to ask the right questions of my medical team.

I’m sure medical professionals may have some doubts about to value of making this kind of information available to patients. I’m sure some patients might just go off the rails if they see lab results in MyHealth that are in red (indicating something abnormal is going on). Overall, I think this is a good move on the part of VIHA but I’d sure like to hear what the pros have to say about it.

In the meantime, if you’re a LifeLabs customer, good luck. There are resources you can access if you feel your medical records may be compromised. Check out the news reports on this. It’s all over the CBC and Facebook.

14 Now we wait.

~ Roger JG Albert

I started the second course of chemotherapy using the new cocktail of drugs called CyBorD: cyclophosphamide, bortezomib and dexamethasone. Ya just got to be impressed by that line-up of fancy Latin names for that nasty little prickly army of toxic chemicals that we have to wear gloves to handle and that I gleefully (albeit not without some trepidation) ingest every week. Next week they’ll also infuse me with zoledronic acid, a drug that is supposed to strengthen bones. So far, so good. I may have said this before, but I will reiterate that the staff at the Cancer Centre at the hospital here in the Comox Valley is really fine. I feel that I’m being looked after. I have a person I can reach on the phone if I have any issues or questions and they’ve given me a letter to take to the Emergency Department if for any reason I should need to go there.

We won’t know for a while yet what effects the chemo drugs are having on my myeloma. It’s a waiting game, but I suppose the whole process is pretty much of a waiting game. There are so many questions and very few answers at the moment. In my last post I told you that I was going to see an orthopaedic surgeon in Campbell River. Well, we drove up to CR on Monday (the 9th) to his clinic in Willow Point. His name is Dr. Deke Botsford and he is a specialist in hip and joint replacement surgery, but he’s also capable of dealing with the issue I have which is the lesions in my femurs. To be precise, the lesions are in what’s called the distal part of the femur which is the part of the femur closest to the knee. He told us that that was an unusual site for myeloma lytic lesions to form but he also said that there were treatment possibilities. So, the lytic lesions are the result of paraproteins in my blood excavating my bone marrow thereby weakening my bone and getting in the way of the creation of hemoglobin. The excavations are called lesions. It may be that the chemotherapy treatments I’m on will arrest the growth of these lesions but then again maybe not. Botsford could drive a rod up my femur from my knee all the way to my hip joint so as to stabilize the bone and keep pain at bay. Or, he figured I might benefit from radiation therapy. I expect my oncologist will want to wait for a while to see what the chemotherapy treatments are doing before launching into another therapy. I see Botsford again in early February at the hospital in Campbell River to get an x-ray of my right femur and to assess the state of affairs in my bones. It seems that my right leg especially is weakened by the paraprotein excavations, but it is not likely to spontaneously break. It could break if I fell, for instance, or banged it a little too hard on a door jamb or something. I’ll try hard to see that doesn’t happen.

As far as pain goes, I’m dealing with it. I’ve reduced my intake of hydromorphone, my main opioid line of defence, but things seem stable enough. The zoledronic acid has a nasty side effect in that it can create elevated levels of pain in the back so I won’t be trying to wean myself off of hydromorphone anytime soon. Besides, if I do back off a bit with the hydromorphone, something I’ve tried a couple of times, I can feel pain creeping back into my ribs and back so I don’t think I want that to happen.

I have been going out a lot, of course, to the lab, the hospital and to doctors’ offices, but late yesterday afternoon Carolyn and I went to the Cumberland Brewing Company to meet with some friends. That’s the first social outing I’ve been on in three months or so. It was taxing, and today I’m exhausted, but it was also good to get out amongst friends and sip on a bitter. Even though I’m very tired I still managed a visit from a good friend and former student now living in Nanaimo. We drank tea out of mugs she made and delivered to us three weeks ago. Everyone has been so kind and generous. Gifts of food and goodies keep coming. I really feel the love.

12 So it begins…

~ Roger JG Albert ~ 4 Comments

First off, I’d like to welcome all of you who are new to following my blog. It’s gratifying to know that my writing is of interest.

[Still holding off on the post about the Emergency Department at the Royal Jubilee Hospital in Victoria. I’m working on it, but I need to write this post and at least one more first.]

Day before yesterday Carolyn drove me up to the North Island Hospital, Comox Valley Campus (I think that’s right) for my first chemotherapy treatment using a drug combination sometimes referred to as CyBorD. The ‘cy’ stands for cyclophosphamide, ‘bor’ stands for bortezomib and ‘d’ stands for dexamethasone. This article from 2009 suggests that this combination is associated with a very rapid response with manageable toxicity. I can only hope that it works for me.

I get the cyclophosphamide (cyclo) and the dexamethasone by tablet to be taken orally every seven days on a cycle of four weeks. I get a subcutaneous injection of bortezomib on the same day as I take the oral doses of the other two drugs. I get another drug by infusion once a month. It’s called zoledronic acid and is a bone strengthening medication often given to patients who have weakened bones due to cancer, which I do. I haven’t had my first injection of zoledronic acid yet but that’s coming soon.

So, I take a schwack of pills, probably fifteen, every Thursday morning then head up to the hospital in the afternoon for my bortezomib injection and for a visit with the oncology nurses. The oncology department at the hospital is superb. The staff is wonderful, calm, attentive and supportive.

The day before the day before yesterday Carolyn drove me to the hospital for a visit with the GP oncologist who is the local connection I have with the oncologist at the BC Cancer Agency in Victoria. Like the rest of the staff, Dr. Bakshi explained all the procedures I was about to experience calmly and attentively. One thing I appreciated with Dr. Bakshi was the way he explained the difference between myeloma and other forms of cancer. Myeloma is not like pancreatic cancer or other forms of virulent cancer. It’s more of a lay-low, make you sick for a long time type of cancer. It’s not unusual for people with myeloma to live ten years after being diagnosed and by then life is mostly a rear-view mirror phenomenon in any case. Myeloma is a disease mostly of older people.

I have to keep this post short because I have very little energy today. Yesterday I had a ‘high’ which was like I imagine I would feel after drinking twenty cups of strong coffee. Boy was I hyper! That’s caused by the dexamethasone. I had a hell of a time trying to sleep night before last, but last night was okay. I finally got a different prescription for my pain meds, hydromorphone. It’s a slow release prescription. I take two tablets a day twelve hours apart rather than taking two short acting tablets every four hours. I still have to get up to pee at night a couple of times, but not having the alarm go off every four hours is quite nice.

Today I got up feeling like I had a huge hangover. That feeling is still with me. It’s not all that pleasant, but it’s tolerable and I’m not going to complain about it. I knew that chemotherapy was not going to be a cake walk and I was right. I have a long way to go with it yet and the experience with it will change as I go along. I just hope I can tolerate this cocktail of meds and it doesn’t push my peripheral neuropathy to intolerable levels, nor does it damage my poor lone kidney.

More tomorrow if I can.

6 Today I write about pain.

~ Roger JG Albert ~ 11 Comments

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.

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

~ Roger JG Albert ~ 14 Comments

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.]

3 What? I’m giddy about seeing an oncologist?

~ Roger JG Albert ~ 4 Comments

Well, giddy might not be exactly the correct word to use here but it’s close. I’ve known for a month or so now that I have multiple myeloma, an incurable bone marrow cancer, but I have also been told that it’s treatable and some people live for some years after their diagnosis. But I’m not sure about anything yet because I have yet to see an oncologist. That changed yesterday, at least the anticipation part.

Yesterday, around 1 PM I got a call from the BC Cancer Agency in Victoria, telling me that I have an appointment with an oncologist at the clinic on Thursday, the 31st of October, Halloween morning, at 10:30 AM. I have no idea what to expect because I have no idea at what stage my cancer is at nor what treatment options there are. Oh, I can make up stories based on Dr. Google research, but that’s a futile pursuit. This disease is idiopathic. No two patients are alike. I guess that’s true for most cancers. There are commonalities and there are individualities. The only reason they can be treated at all is because of the commonalities. Without pathological patterns no illness could be treated. Still, the idiopathic aspects of this disease make it hard to compare experiences with others facing the same disease. We can commiserate, but that’s about as far as it goes. That said, there is comfort in commiseration.

So, this morning at 7:45 I attended the medical lab in Cumberland so they could take a dozen vials of blood and some urine (boy, did I have to pee when I got there) in anticipation of my appointment with the oncologist, but also with a nephrologist in Nanaimo on November 7th. On Saturday I have a CT scan and on Sunday I do a twenty-four hour urine collection for the nephrologist. I might already have told you this, but I am taking prednisone now and I’ve had an infusion of some drug the name of which I forget. So, in effect, my treatment has already started. I can’t wait to see what the oncologist has in store for me come Halloween morning.