What? I’m giddy about seeing an oncologist?

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.

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.

I Have Cancer. Damn!

I was recently diagnosed (late September) with multiple myeloma or bone marrow cancer. My bone marrow has gone buck wild and is producing way too much of a particular substance the pathologist euphemistically calls ‘muck’. I’ve probably had it for some years, but the symptoms are very similar to those of other diseases and conditions making it difficult to diagnose. I’ve not been well for years. The past two years have been especially difficult and the last four months almost unbearable. I’m still functioning, but at a much-reduced level than I’m used to. 

This isn’t the first time I’ve had cancer. I had kidney cell cancer in 2002 and had my left kidney removed in an operation that left me with one (fully functioning) kidney. Now my remaining kidney is compromised because of the multiple myeloma so things aren’t looking particularly good for me. There are still tests to be performed and a prognosis to be arrived at, but as soon as the test results are in the BC Cancer Agency in Victoria will give me a call and arrange an interview and set a course of chemotherapy. A lot will depend on the stage of my myeloma. Some people do very well with chemotherapy and new drugs are being developed every day to target the specific pathogen that’s attacking my blood. I still may squeeze a few more years out of this old body of mine yet, but the next few weeks will tell the tale. Multiple myeloma is not curable, but it is treatable. 

I’m not afraid of death. I’ve often written about death and the cultural systems we’ve created to deny death, which actually build on our natural, biological aversions to disease and death. As you can easily ascertain by reading my blog this has been my main focus over the past few years. Dying is another matter altogether. I’m not particularly afraid of that either, but it is full of unknowns. I’m going through the various stages people do when faced with this kind of diagnosis: grief, anger, sadness, self-pity although these feelings are fleeting, and I soon get on to more positive emotions. I feel some guilt too. Yes, guilt. Guilt that’s impossible to escape in this culture. Guilt for succumbing to disease and death, the twin evils that we’ve identified as the greatest threats to us. In moral terms, and culturally, we abhor weakness, physical or social. Sick or poor people are to be feared in our culture. We tend to marginalize both if we can, but that’s not always possible because the world is not as simple as that.  

I know I’m on my last legs. I’m almost 73 after all and have had a great life. Nobody gets through life avoiding death except in novels and movies. I have no idea how long I have to live, but whatever time I have I just hope that my quality of life improves enough so that I can finish some paintings I’ve been working on, maybe re-canvas our canoe and continue writing this blog. In fact, I’ll use this blog as a kind of journal chronicling the process of being ill, then diagnosed, then treated. Stay tuned. 

Please don’t suggest any treatments or diets or whatever. I won’t be going to Mexico for any heroic treatments. (If and when I feel better we may go to lie on a beach though.) I’m not desperate. I won’t be buying a juicer either and I’ll continue to eat the great, wholesome mostly unprocessed food that I currently eat but my body will follow, as it must, the second law of thermodynamics. I’m okay with that.

SOMETIMES I KISS MY FEET: Wheelchair Adventures in Pakistan and India (2019 Sky Road Publishing) by Judy Norbury

I seldom publish book reviews here, but I’m making an exception for this book by Judy Norbury about her adventures travelling in Pakistan and India in the Fall of 2007 and the Winter of 2008.

A Review

I’ve known Judy Norbury for decades. Our daughters are long-time friends, and in their youth were roommates in the Commercial Drive area of East Vancouver. Judy is a neighbour and has been since 2002 when we moved to Cumberland, BC on the eastern slopes of the Beaufort Range in the Comox Valley on Vancouver Island. I also know Judy as a performer. She has a wonderfully powerful voice, played guitar and sang for some time with Joanna Finch, another Cumberland resident and singer (they still perform together on occasion). I always knew Judy as a talented, warm, generous human being. However, before reading Sometimes I Kiss My Feet I had not known Judy as an author. I was surprised to learn that Judy had published two other works in 2008 or thereabouts, both available on Amazon. Reading Sometimes I Kiss My Feet confirmed for me, once again, Judy’s wonderful creative abilities. 

Norbury was born in the foothills of the Himalayas at a place called Mussoorie in Uttar Pradesh. At four years old she contracted a severe case of polio after which she was left unable to walk. Following her recovery, she and her family moved to Vancouver, British Columbia, travelling via Britain and France. There she went to school and grew up as any other kid would. Still, she had wanderlust and travelled often with her family and later with friends. She did not allow the fact that she was wheelchair bound to dampen her enthusiasm for travel, even for camping. In fact she writes: “…my disability has taken me to places I could never have gone were I able-bodied.” This can-do attitude is what allowed Norbury to plan travel in North America and eventually to Pakistan and India. 

In 1996 Norbury, accompanied by her partner, Ross, and her twelve-year-old daughter Belinda, returned to India for three months. That experience, after she got over memories of how difficult and distressing it can be to travel in India where life is so completely different from what it is in North America, where disabled people are considered the lowest of the low, and where sanitation and rodent control are not high on government priority lists, she recalled the joy and friendliness she also encountered in India even among the poorest and disadvantaged inhabitants. Travel can be crowded and unpredictable. Indians are not always the most law-abiding travellers. Still, she longed to return to the unpredictability and the adventure of travel in India. 

In 2004 Norbury and Finch were asked to perform at the Disabled Peoples’ International World Summit in Winnipeg. There she was with two thousand disabled delegate from all over the world. There she met Ghulam Nabi Nizamani who would figure prominently in her return to India, this time via Pakistan, Nizamani’s home, in the winter of 2007. Nizamani is the vice-chair of the Disabled Peoples’ International, Asia-Pacific Region and he had plans for Norbury when she arrived in Karachi, Pakistan at the mouth of the Indus River Valley, especially when, by chance, Norbury and her husband, Ross, would be in Pakistan on December 3rd, the UN-designated International Day of Persons with Disabilities. She (and Ross) would be expected to give speeches and attend functions as head table guests. Norbury is the consummate storyteller as she describes being driven to venue after venue, she and Ross making speeches, meeting dignitaries and disabled people in Karachi and in Nizamani’s hometown some rough kilometres away. After a month in Pakistan, Judy and Ross packed up and headed to India and Mirzapur, a city with which she and her family had close ties. 

I will not retrace Norbury’s adventures here one by one. Instead, I encourage you to buy Sometimes I Kiss My Feet and discover for yourself how Norbury masterfully weaves stories of filthy, often wheelchair inaccessible toilets, barriers to wheelchair access at every turn, rude, uncompromising able-bodied travellers and crowds everywhere. Mixed in with the nasty, frustrating aspects of touring northern India, Norbury never wants the reader to forget the generosity and kindness she and Ross experienced everywhere they went. She gets in the odd dig at the Indian government’s failure to accommodate the disabled. This book is more than a retelling of the frustrations of travel in a wheelchair unfriendly country. It’s also a love story and an understated political statement about social justice and the value of human life. Buy the book. I couldn’t put it down, I expect you won’t be able to either. 

New American Civil War?

I’m sitting here pretty much incapacitated by some undetermined health issues, anticipating yet another doctor’s appointment tomorrow to go over yet another set of lab results, and trying to distract myself from too much inward looking self-pity. At least I can still write. The brain fog I’m experiencing makes it somewhat more difficult than in the past, but I can still do it, especially if I write about something I have some passing knowledge of.

A new American Civil War? Perhaps. The first American Civil War in the 1860s was fought by agricultural capitalists in the South against industrial capitalists in the North but it was couched in state-based rhetoric: Northern states versus Southern states. During the war, there was less emphasis on the economic interests than on slavery, ‘freedom’, and the need for a ‘United’ States. Capitalism can tolerate slavery to some extent, but it really needs a labour force that is also a consumer force. Slavery is incompatible with a growing need for mass consumption. Of course the first American Civil War was fought using non-economic rhetoric and propaganda but the underlying logic of the war was economic and political. Contemporary Confederate flag wavers are not focussed on economic, but on some imagined lost ‘freedom’, and Southern solidarity: Us hard-done-by-Southerners versus You overbearing, holier-than-thou Northerners. The longevity and sustainability of Southern feelings of oppression by the North should tell us something about the depth of feeling in the US now. Looking at a map of the US featuring red and blue states illustrates that there are still glaring geographical differences in people’s attitudes and in their political loyalties. The Southern states, now including Texas, are still feeling hard-done-by. (Some of the northern mid-American agricultural/rural states likewise). Visiting Texas it’s clear that there is an underlying uneasiness and separatist impulses have not completely dissolved. I haven’t visited Idaho, Wyoming or Montana, but rural, agricultural areas are clearly alienated from New York and California. It may be the United States of America, but it’s not the Solidarity States of America. Internecine squabbles and jealousies abound.

The Second American Civil War may well have a rhetorical veneer of statism and rage (yes, rage) over perceived (and sometimes real) social and economic inequalities, but if Donald Trump is successful, it will be a moral war, one fought by people who have fully absorbed the moral imperatives of the capitalist promise of free enterprise (while hardly benefitting from it personally) against people they perceive to have abandoned American ‘freedom’ and ‘liberty’. The move to impeach Trump will only further solidify the camps, but Trump has not given the Democrats many options. I’ve recently read a number of articles in the New Republic and in other publications that argue that the way to combat Trumpism is not to call out Trump supporters as stupid, ignorant morons, but to engage in dialogue and community building with them so as to understand their grievances and support them in coming to a more reasoned assessment of the issues. I’m not sure there’s time for that.

Trump will continue to inflame passions with his frequent Tweet storms and rallies, accusing high level policy makers of treason and high crimes. How long can this go on? How long will it be before we see a convoy of Mad Max wannabes rampaging through the streets of America’s major cities randomly shooting people, raping and pillaging? How long will it be after the initial skirmishes and outburst will be see anti-Trump militias grow in defence of their families and communities? What of the police? Will they serve the American Constitution against concerted attacks on democracy from all sides? Will they be peacemakers or will they take sides? And what of the military? Will the military take sides? Would the military support Trump if he decided not to vacate the White House after a narrow electoral defeat in 2020?

It’s dreadful to even think about possible scenarios of violence, lawlessness, and totalitarianism but to not think about them is irresponsible.

I’m a Canadian. As Pierre Trudeau said decades ago, we are a mouse sleeping next to an elephant. Woe be the moment when the elephant rolls over in his sleep. For Canadians there is no isolation from American extremism. Over 80% of us live within a hundred miles of the American border. We have family and friends in the US. We worry about their safety and security.

I am a retired college teacher. I told my students decades ago that America was headed for a civil war. The tensions caused by American corporations creating global markets and (at least for the moment) eliminating good paying jobs in manufacturing to exploit cheap labour in Asia, Africa and South and Central America, were bound to lead to widespread social unrest, nationalism and jingoism. I don’t think that global supply chains and markets are going to be easily dissuaded by Trump. They continue to create subsidiaries and engage contractors in China, India and elsewhere. North American manufacturers continue to expand their supply chains and are not interested in containing their activities to US territory nor would they be interested in repatriating manufacturing. I can’t imagine Nike returning to Oregon to manufacture its products. It has no capacity to do so in the US and it would be prohibitively expensive to build new factories in Beaverton, Oregon, the site of its headquarters. There are some agricultural corporations that are moving their processing facilities from Canada to the US in a move, in part, to placate Trump supporters, but they still need Canadian raw materials. The complexity of global capitalism is staggering and strangely enough, that is what gives me any hope at all that a second American Civil War can be avoided. Many US manufacturing corporations that keep research and development functions in the US but produce their commodities everywhere else on the globe are pushing back against Trump’s tariffs. For example, iPhones are made in several places, mostly in China (check out FoxxCon) but may also be made in India shortly. US tariffs will force the price of iPhones upwards, but that’s true for many so-called American products made in China and elsewhere. The world is now so economically intertwined and interconnected that starting a war with China, say, means crushing America’s own manufacturing and processing capacity. I’m hoping that America’s business leaders will have the guts to seriously oppose Trump. I’m not sure that will happen and they may just try to wait him out. I’m unconvinced, however, that any business opposition to Trump will be able to coalesce sufficiently to help ease tensions in the US domestically.

The picture is much more complex than I’ve presented it here, and I may be a victim, like many others, of hyped up, sensationalist news. However, I perceived, like others, this trend in America for decades, before social media, fake news and the gutting of the CBC and other formerly independent news sources. I read widely and I search out different points of view. Trump supporters are caught up in a cult-like mindset unencumbered by reason and will not easily be dissuaded even if dire predictions of the imminent collapse of America do not come to pass. Sadly, some extreme lefties are caught up in the idea that all Trump supporters are ignorant, stupid slobs. There isn’t much room for moderation, reconciliation, or peace in this extremism. Is it possible for the political ‘middle’ to assert itself and put a stop to all forms of extremism? If so, how would that happen? If not, where do we go from here?