This is no fun at all.

Well, this is no fun at all.

I’m not silly enough to believe that a life with myeloma would be fun, but I’m kind of disappointed that it’s been such an unmitigated downer. I am, I can now see, destined to drag this goddamned disease with me into the grave. Come on, I knew that! Still, a bit of a break now and then would be welcome. Is that too much to ask?

Actually, I think the nastiness I’m experiencing in spades right now stems mostly from the chemo meds rather than from the myeloma itself. This past week would support my idea that the meds are as bad as the disease at the moment for making me feel tired, dizzy, and in pain.

I went to the hospital on Thursday for my bortezomib shot after taking all the rest of my chemo drugs in the early morning. I expect Thursdays to be non-days, and this one was certainly that. A non-day is one when I can’t gather enough strength to do much of anything. However, Friday and Saturday also turned out to be non-days and Sunday wasn’t much better.

I felt a little beaten down. Of course, I should have expected it because my local oncology GP did warn me that they were going to ‘challenge’ me with my chemo med doses. No more mamby-pamby half doses for me! I was to get the full meal deal! Yes, indeed. Silly me.

Then I figured that maybe I needed a good dose of positive thinking to counteract all of these drugs. Maybe all I needed was a little endorphin fix. After all, I used to teach positive thinking on the Knowledge Network back in the ‘good ol’ days’ of 1986 to 1992. I used to teach as Ehrenreich points out “that on many levels, individual and social, it is good to be ‘positive,’ certainly better than being withdrawn, aggrieved, or chronically sad.”*

The problem is I’ve learned a few things since the early 1990s, not the least of which are the limitations of positive thinking. The American Cancer Society on its website states very clearly:

An important part of coping with a cancer diagnosis is recognizing emotions and feelings. Treatment that deals with our emotions and relationships (sometimes called psychosocial interventions) can help people with cancer feel more upbeat and have a better quality of life. But there’s no good evidence to support the idea that these interventions can reduce the risk of cancer, keep cancer from coming back, or help the person with cancer live longer. Still, things like group support, individual therapy, mindfulness, and relaxation techniques can be used to help reduce distress and cope with the emotions that come with a cancer diagnosis.

https://www.cancer.org/cancer/cancer-basics/attitudes-and-cancer.html

So, it seems that belonging to a support group has some positive effects, not on survival or anything like that, but in feeling less tired and in stress reduction. There is a support group in the Valley. I haven’t attended any of the meetings yet. I’ve been too goddamn exhausted to do that until now, but maybe next month! Then, maybe I’ll be less tired!

The American Cancer Society, on its website, starts off with this: When a person is told they have cancer, they might find themselves wondering:

  • Did I bring the cancer on myself?
  • Can my emotions really make cancer grow or affect the outcome of my treatment?
  • Can I control the tumor growth by visualizing how my body is fighting the cancer or by thinking myself well?
  • Would relaxation or keeping a “positive attitude” help cure my cancer?

I can easily reply an emphatic NO! to all these questions and the website goes on to refute each in turn.

Ehrenreich writes:

In the rational explanation that many psychologists would offer today, optimism improves health, personal efficacy, confidence, and resilience, making it easier for us to accomplish our goals. A far less rational theory also runs rampant in American ideology—the idea that our thoughts can, in some mysterious way, directly affect the physical world. Negative thoughts somehow produce negative outcomes, while positive thoughts realize themselves in the form of health, prosperity, and success.✤

The upshot of the idea that negative thoughts produce negative outcomes is the notion that people bring their diseases on to themselves by thinking negatively. Never mind that this idea is completely debunked by the American Cancer Society and people like Barbara Ehrenreich, there is a strong current of belief ‘out there’ that we are the victims of our own negativity. That goes for people with chronic illnesses, auto-immune diseases, and cancer. If you’ve got it the ‘reasoning’ goes you’ve brought it upon yourself.

This of course dovetails nicely with the predominant capitalist morality in our culture which states that individuals are inherently responsible for their actions and weakness of all kinds is abhorred, shunned, and denigrated. If people exhibit any signs of weakness, whether they are poor or in ill-health, it stands to reason that they must be responsible for their condition. That’s why people, especially those caught up in a full-blown subscription to capitalist morality, often go to great lengths to hide their poverty and ill-health. They are also the ones that tend to judge most harshly the poor, the homeless, the disenfranchised, the physically disabled, the chronically ill and the aged, even if they themselves could be included in any one of the categories I just mentioned.

Myeloma is a disease of the bone marrow. It’s entirely organic. As of yet there is no cure for it. It will not respond to positive thoughts or negative ones either, for that matter. Ehrenreich writes that “There is a vast difference between positive thinking and existential courage.” ✦ If there’s anything I strive toward it’s existential courage. However, if you catch me in a moment of deep angst over my imminent (yes, ten years is imminent) death, cut me some slack. I can’t always be perfect!

__________________________________________________

*Barbara Ehrenreich, Bright-Sided: How Positive Thinking is Undermining America. 2009. Kindle Edition, Location 89.

✤Ibid., Location 125.

✦Ibid., location 145.

Well, this is a pain in the ass!

Literally. Although technically, the pain is in my hips. But as you know, hips are very close to asses so I feel justified in using the title above.

My hips have been giving me a bit of grief lately but usually only in bed at night. They don’t hurt during the course of the day. I tend to sleep on my side, usually my right side. I’ve noticed over the past few weeks, however, that over the course of a night, I might have to shift my body from my right side to my left side every hour or so. I could take more hydromorphone I guess, to alleviate the pain, but I feel like I need to have some idea of what’s going on in my body. Trying to eliminate all pain all the time seems ridiculous to me. Us humans are built in such a way as pain is pretty much a given whether from overuse, as in doing too much exercise, from injury via trauma, or from things like appendicitis. I want to know what’s going on in my body and it’s pretty hard to do that if I’m always zonked out on opioids.

Pain, pain, pain! I’ve had lots of that in my lifetime although just looking at me you wouldn’t know that. I look pretty good for an old guy. Still, pain has been an expected companion most of my life. Mygawd, in my early twenties I had a laminectomy, a disk removed in my the lower back because of a planer mill accident, but I’ve already mentioned that in a previous blog post. I had to be peeled off the ceiling a number of times from that one. No pain has ever stopped me from doing things, however. It may have stiffled my dreams of being a world-class athlete, but it never stopped me from running and walking fairly long distances, and farting around in my shop and studio. Of course, I had to be careful. Sometimes my back would send out signals for me to back off, and I would, not being a complete idiot.

A few years ago, though, I had had enough with pain and my doctor had had enough of me complaining about pain, I guess, so he sent me to a pain clinic in Nanaimo. Well, that was interesting. I assume that pain clinics are good for pain caused by overt trauma and that sort of thing. My experience is that as far as chronic pain is concerned, they struggle with coming up with good solutions. At the end of my time at the clinic, they were thinking of implanting a tens machine in my side at the site of my 2002 kidney surgery. The site of my kidney surgery from 2002 still pains me. However, I wasn’t about to have a tens machine implanted in my body so the clinic and I parted company. The clinic still exists doing lots of good, I’m sure, and I still exist too, still in pain. Well, there ya go!

Over the last few months, as you know, I have been diagnosed with bone marrow cancer, just another reason to have pain. I have no shortage of reasons to have pain. Now, however, my family doctor is only too happy to prescribe opiates. He’s always been fairly liberal when it comes to prescribing pain medications, but now I especially appreciate his willingness to treat my pain with whatever it takes. One thing is that treating the pain from my bone marrow cancer also has the benefit of dealing with some of my chronic pain issues. That has been good although I’m still in pain. I’m certainly not trying to eradicate all my pain. Feeling pain means I’m still alive. Of course eating sticky buns has the same effect, but that’s a lot more pleasant than feeling pain as an indicator that there is still life in these old (now eroded) bones.

My oncologist, however, seems to be clueless about pain. When we visited him in Victoria last year I was in a lot of pain, obviously so, I thought. He told me to take a couple of Tylenol. He, he, he. A couple of Tylenol? Sure, dude.I can’t imagine he’s ever felt any kind of acute pain so he just can’t relate. Ibuprofen works well for me, but I can’t take anti-inflammatory meds because I have only one kidney. Pity. I think I could avoid a lot of opioid use if I could take anti-inflammatory meds. In any case, my oncologist, in exasperation, I think, because I keep telling him that I’m in pain, and he doesn’t want to hear that, decided that I should go to a pain clinic. Well, I was not particularly receptive to that, but after a little deliberation with Carolyn, I decided to humour him. So. off I go to the pain clinic only it’s not called that.

Yesterday, I got a call from ‘Leanne’ from the Palliative Symptom Management Clinic which has a branch here in the Comox Valley. Now before you get all weirded out by the word ‘Palliative’ in the title, don’t worry, I’m not getting signed up for end-of-life care just yet. Palliative care, it turns out, refers to pain management in general. We’ve come to associate it with end-of-life care, but it doesn’t have to refer to that. Leanna had lots of questions for me like: do you have a gun in the house? Are you depressed? Do you have place for the nurses to park when they come to visit you?

I’m looking forward to seeing what this palliative care group can do for me. The doctors involved may have good advice for how to manage my pain meds. Eventually they can hook me up to a huge bottle of morphine and I can blissfully drift off to permanent unconsciousness, but not just yet. My lab results are indicating that I’m heading toward remission so back off with the bottle of morphine!

We saw my orthopaedic surgeon yesterday and he’s ordered another CT scan of my right femur, the one with the bone excavations. He just wants to make sure the lesion isn’t getting any bigger because it has been more painful lately. So, next week I see my family doctor on Monday, then I go into the hospital on Wednesday for a visit with my local oncology GP, and to get a zoledronic acid infusion. I’ll probably get a CT scan this week too. On Thursday I go back in to start a new chemotherapy cycle, my third! Never a dull moment. Wish me luck!

Looking in the Mirror.

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

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

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

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

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

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

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

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

I meditate on my last breath.

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.

Now we wait.

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.

Multiple Myeloma Makes Me Special!

I’m always a sociologist so whatever happens to me triggers an instinct I have to do check it out, do the research, connect the dots. In my book, the more information we have the better. At the moment, we have an information deficit and that’s frustrating but, hopefully, that’s about to change.

In any case, one of my first research stops is Statistics Canada. What’s there to learn there? Well, for one thing, multiple myeloma (MM) is a pretty rare form of cancer and that makes me special, don’t you think? Stats Can reports that there will be about 3000 people in Canada diagnosed this year with it. That’s not a very high number. Stats Can also projects that from 2018 to 2022 only 70 men in BC will be diagnosed with MM in my age group every year. Because doctors seldom encounter it, it can be difficult to diagnose, but back to that in a bit.

I’m in good company too when it comes to MM. Jim Carr, the Liberal Member of Parliament for Winnipeg Centre and Minister of International Trade in the Federal Cabinet, was diagnosed with MM the day of the election (Monday, Oct. 21st) when he went into the hospital complaining of flu-like symptoms. By Tuesday he was receiving chemotherapy and dialysis and by Thursday the CBC was reporting that the Minister said he was doing fine, felt okay and was going to continue serving his constituents and the Canadian People. I’m so happy for him. He won’t be cured, but he will probably be able to function quite well for some time to come. By contrast, my doctors knew I had MM three weeks ago and I have yet to see an oncologist and will have to drive 225 kilometres to Victoria for the pleasure. Living in the boonies as we do, access to specialized health care can be spotty at best and will only get worse if the Vancouver Health Authority has its way. (That’s the subject of another blog post but DecafNation, George Le Masurier’s excellent blog, has been on to this for some time). It’s true that an oncologist in Victoria is on my case and has already prescribed medications for me and I got an infusion of a drug a couple of days ago at the hospital here to help with the pain and ‘strengthen bone’. Still, I feel that I’m not getting the level of care I would have gotten if I were a member of the Canadian political aristocracy or if I lived in a large metropolitan centre. My age likely has something to do with it too. I’m an old guy and not likely to live too long anyway and besides, I’m no longer a contributing member of the economy having retired from teaching at North Island College in 2012. Does that sound like sour grapes? It may be, but socio-economic status (class, gender, age, and geographical location, etc.) has a lot to do with health care provision whether we like to admit it or not.

Alright, so back to my situation. I’ve probably had MM for a long time. I have low B12 and was diagnosed with pernicious anemia at one time by a locum (temporary replacement for my regular doctor) , but my doctor didn’t really accept this diagnosis and prescribed B12 monthly injections (which I do myself). The thing is, I had been going to my doctor for years complaining of being tired, having brain fog, being in lots of pain, and suffering from peripheral neuropathy. To give my doctor credit, he ordered MRIs of my brain and spinal cord, lower back, ultrasounds, etc., because there is a history of Multiple Sclerosis and other immunological diseases in my family. To add to this, I has a kidney removed in 2002 because of renal cell cancer, leaving me with one kidney. For a long time we tested my creatinine levels to ensure my kidney was functioning properly and it did for years. In the last three or four years however my kidney showed signs of being very unhappy. Creatinine levels were rising and still are, and I was getting weaker and weaker all the time with worsening symptoms.

My social life was taking a huge hit. Over the past few years I’ve had to pretty much give up going out in the evening because I’m exhausted. I had to give up life drawing, printmaking and sculpting. I had to resign from the Village of Cumberland’s Homelessness and Affordable Housing Committee and I had to resign as Chair of the Board of the Comox Valley Art Gallery (although frankly I had been doing that long enough). I can no longer go on long walks with Carolyn, something that we both really enjoyed.

After a while, I think my doctor kind of gave up trying to figure out what was wrong with me and I was beginning to wonder if it was all in my head.

About a month ago, all that changed. We had gone camping in Strathcona Park in August. I was not feeling great, but well enough to get the canoe out and paddle/sail/motor around a bit. A couple of times, however, we got into bucking huge headwinds and were forced to paddle hard. Carolyn and I are seasoned paddlers and we know what to do. I felt pretty strong and we handled it fine. Of course we had some muscle pain, but scotch helped out with that a bit! Then my daughter and her family joined us. One day as I was sitting at the camp site doing nothing, my back started hurting something awful. By the time I decided to take some ibuprofen (not to be taken by anyone with any kidney issues) my pain was pushing 9 or 9.5 on a 10 point scale. I was taking T3s like they were candy. When it was time to go home, my son-in-law drove the truck and trailer. I rode shotgun. I have driven very little since and not at all for the last month.

A short time later, I made an appointment to see my doctor to let him know about the back pain and my use of ibuprofen. He figured we had better do some blood testing and we did. He was headed out on vacation for three weeks so I wouldn’t be seeing him again until Oct. 22nd or so. Well, he called me on Friday at around 5:30 and told me that my kidney was leaking protein into my urine and that he had referred me to a kidney specialist in Nanaimo. That was a bit of a shock. I didn’t quite know what to say so I left it at that.

Over the weekend, Carolyn and I sat down and wrote down all of my symptoms and questions to which we wanted answers. On Monday, I called the medical clinic and got an appointment to see a locum to ask questions about what a protein leak meant and to lay out my symptoms. Well, he ordered more blood tests and imaging. We saw him again on Thursday by which time he already had a strong suspicion that I had multiple myeloma. On Friday he called and pretty much confirmed the diagnosis. On Monday we saw another locum and she ordered more tests and imaging as well as a bone marrow biopsy. She also referred me to the Cancer Clinic in Victoria.

So, in less than ten days, the locums had figured out that I had cancer and were moving fast to get me treatment. Possibly all that it took was a fresh set of eyes on my case. Certainly, the referral to the kidney specialist would have got me some results but I’m not scheduled to see him before November 7th. I wondered what my regular doctor would say when he got back from vacation. I am definitely pissed off that I went so long undiagnosed, but I don’t really blame my GP entirely for that. I may not have impressed on him the real state of my distress and MM is not easy to diagnose because it shares symptoms with so may other ailments. Besides, raving about past injustices will get me nowhere. I need to focus my full attention on the present and the future.

So, in any case and in the meantime, I called the Cancer Clinic and a person there confirmed my referral, gave me an ID number and said that I would be seeing such-and-such a doctor. Well, my regular doctor informed me just this past week that there had been a mix-up in the referral and that I would be seeing another doctor at the clinic. We have yet to hear from the Cancer Clinic. If I don’t hear from them by tomorrow afternoon I’ll be calling them again. We need some goddamn answers and I need to get some goddamn treatment. Stay tuned.