Funny, but I don’t feel like a dying man, nor am I eager to find out what that’s like. No matter what the medical experts think, I don’t feel as though I’m dying.
All the indicators are there: I’m dying. I’m old and I have myeloma. Myeloma is incurable and I’ve probably had it for at least a decade, but I was only diagnosed with it in the fall of 2019. At that point I already had lytic lesions (caused by myeloma) in my femurs, especially my right femur. I suffered through chemotherapy for almost three years before abandoning that course of action in September, 2022. Now, I’m palliative. That means that I have a medical team that aims to reduce my pain to tolerable levels. As soon as they hear ‘palliative’ many people immediately assume end-of-life, but the two don’t necessarily equate. I’m still mobile. I just had my driver’s licence renewed (although I rarely drive), I’m getting back into drawing and watercolour. I’m writing, obviously. I’m not bedridden.
We are all so different. Myeloma is especially idiosyncratic. In fact, there are several types of myeloma affecting individuals in various ways. One of the distinct problems with oncology today in an outback like British Columbia is that there are few resources that are dedicated to dealing with cancer. It can look like there are lots of resources, but there aren’t really when it comes to dealing with diseases like myeloma and its treatments. If you check out the BC Cancer Agency’s (BCCA) website, you’ll learn that almost 30,000 new cases of cancer were reported in 2019, the year I was diagnosed. It would take an inordinate amount of money and other resources to deal with that number of new cases, let alone the number of people already identified with cancer in the years before 2019. The numbers are staggering. The challenge daunting.
When I was diagnosed in 2019 I was put on a standard chemotherapy protocol. That didn’t work. It caused a rash around my midsection that was incredibly itchy. Considering the failure of the first protocol, I was put on another protocol, this time with three drugs. Anyway, over the next few months, the protocol failures outnumbered the successes so that, eventually, just a couple of months ago I quit chemo altogether. There may have been another drug I could have potentially used, but it would have required very close, ongoing, and individualized care. An oncologist at BCCA told me that they just didn’t have the resources to deal with that kind of individualized need, that is, for me. So, here I am, palliative.
I want to write about Jim Carr for a paragraph or two. He was a Canadian Federal Minister of International Trade Diversification elected in Winnipeg, Manitoba, first in 2015, then again in 2019 at which time he was diagnosed with multiple myeloma. He was in his late 60s at the time and received a stem cell transplant and dialysis along with chemotherapy. He died on December 12th, 2022. He gave his last speech to the House of Commons on December 6th. I can’t be certain about this, but it may be that Carr had a form of myeloma that specifically attacks the kidneys. His early treatment with dialysis indicates to me that his kidneys were failing, probably the thing that ultimately led to his death. So, was it myeloma or kidney failure that killed him? I have no information about any of his symptoms. I only have what was reported in the news. Still, a few things come to mind about his case. The news reports indicate that he was diagnosed in the fall of 2019, just as I was. It appears the chemo treatments didn’t work for him any more than they worked for me. In fact, I strongly suspect that had I not had any chemotherapy I’d be no worse off for it now. Chemotherapy must not have worked for Carr either otherwise he would have shown more positive results and lived longer.
The fact that Carr was up and about giving a speech to the House of Commons on December 6th and died on the 12thindicates to me* that kidney failure ultimately precipitated his death. The oncologist we spoke with at the BC Cancer Agency after I had decided to quit chemotherapy insisted that I would not likely die precipitously but would experience a slow degeneration of my health over a period of months if not years. The fact is that people die of myeloma for a number of reasons and over various periods of time between diagnosis and death. As I’ve noted before, myeloma is notoriously difficult to diagnose so people like me might have myeloma for years before being officially diagnosed. That might have been the case for Jim Carr too. For all I know he might have been one of those people who doesn’t easily talk about how he feels and would want to ‘tough it out’.
One observation around the news reports of Carr’s myeloma diagnosis is that Carr could fight this. Of course, people want to say ‘the right thing’, at times like this. Commentators from Trudeau to Joly to any number of politicians, federal and provincial stated things like: Carr has been “a leader in many fights, and this one is another one [he] will win.”** Well, no, he could not win the fight, nor can any of us. Besides, it’s not a fight. Myeloma is incurable. It can be treated to some extent, but even in the face of all the positive talk from the oncology community, nobody walks away from myeloma alive, and ultimately, no one walks away from life alive.
*a rank medical outsider to be sure but a keen observer nonetheless of my own illness and that of others.
9 thoughts on “I’m dying?”
Thanks. Very enlightening. Glad your feeling better. Do you have any suggestions as to the best way to provide support for individuals/families struggling with medical conditions? There aren’t enough resources to support children and families with disabilities. These numbers are going to increase as the population shifts so I’m gathering suggestions/ideas.
There are many resources. Hospice societies are a great resource as well as Community Care organizations. I really don’t have the
inclination to do a lot of research right now. The organizations are out there. There are lists of them. Just ask the Social Planning Society.
I have really enjoyed your posts since you’ve been in this courageous battle Roger. It does sound like you are feeling better since discontinuing chemotherapy and I do hope you continue to feel well as long as you can.
I lost a brother-in-law to pancreatic cancer this year and sadly I believe he fell through the cracks. In January and February he was going to Comox Valley Hospital Emergency almost every day for pain meds and then to have fluids removed from his gut. By the time they really started looking into the cause of his pain it was basically too late and they couldn’t do anything for him. He was in so much pain until he checked into hospital and his pain was finally managed. He underwent MAiD on March 26. His wife (my sister) who was at the Views with Dementia, was so lost without his daily visits died shortly after.
I wish you and Caroline a a very Merry Christmas and all the best to you both in 2023.
I’ll pass on your regards to Carolyn. She’ll be pleased to hear from you. It’s hard to believe that your brother-in-law wasn’t properly
diagnosed, but then, neither was I. I live only because my type of cancer is nowhere near as virulent as your brother-in-law’s.
Have a good holiday season, Pam. Merry Christmas and all that.
Hello Roger. Thank you for your post. I was not aware of Jim Carr’s diagnosis. A good, honorable man whose life made a difference on the small and larger stage. I wish the treatments had been more effective. That is not always the case .I too really dislike the terminology of a war on cancer, losing the battle etc. No we are not going to beat this, at least not yet.Friends and family try to say the right thing I guess. I always smile and say no that is not going to happen. Maybe someday.
Merry Christmas Roger. May you find yourself among the people you love, sharing in the joy and love of the season.
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Thanks, Brenda. I say the same thing when someone says to me: “Yeah, you’ll beat this!” No, I won’t. My sister tells me she’s
praying for me and that miracles happen. Well, maybe, I retort, but not for me and not this time. That doesn’t matter to her. She’s
convinced I won’t die. Such powerful denial.
Thanks for your comment, Brenda.
I find it specious and indeed a fiction intended to sooth surviving loved ones that people are said to have passed from cancer after a brave fight. It seems like everybody I have ever known who has succumbed to this cruel disease has at best rolled with the punches and tried to carry on as best they could except for a very few who took to their beds and waited for death. But what do I know? What does anyone know except for the folk dealing with it and their close family. Fighting the good fight is a platitude for those left behind. However, I am delighted that the news of your imminent demise has been exaggerated, at least for now, and that you have time and ability to do what you want and need to do in whatever present you have. Maybe, curiosity does not kill the cat but saves him from stultifying impotence? Well done you as you think yourself onwards and upwards while encouraging us all to live life while we are able. We are so lucky to know you
Thank you, Marilyn. In common parlance we often use military, , sports, gambling, and business analogies. “The bottom line” is a common expression that comes to mind. “Par for the course” is another. That’s no “big deal”, is a saying I’ve heard often enough. I don’t know if “hold the line” is a military or a sports analogy, or both. Our language is metaphorical to its very roots. I’d be surprised if we didn’t use analogies in the end times. So, for dying, we use: he passed, or maybe, and oddly, he bought the farm. Strange species we are.
i say that somebody died. No euphemisms, . Unless the surviving loved ones might be really distressed by that word, then I substitute “gone”. Works even for the very literally religious
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