BC Cancer Agency

One Day at a Time.

~ Roger JG Albert ~ 4 Comments

Who knows how much time I may have left to live. A week, a month, a year, two years, it’s all the same to me because after I’m dead, I won’t be around to regret or celebrate anything that happened to me while I was alive, including dying.

I had my last chemo treatment on September 15th. That’s it as far as chemo goes for me. On the 16th I had to go to the ER to reverse the damage to my body brought on by the chemo meds I took on the 15th. I wrote about my weekend from hell on my last blog post. I don’t need to go over it again. Now, I’m hoping that the damage caused by the chemo meds can be reversed sufficiently so that I can have a modicum of a life back. Frankly, I don’t hold out a lot of hope, but who knows? There are some hopeful signs.

Today is September 30th, 2022.

So, I’m only two weeks without chemo meds, but it seems that I already have more energy than I had while I was on chemo. I’ve had to bump up my dose of hydromorphone, but I’m not sure if that will have to continue into the future. The hydromorphone is essential for dealing with the pain I feel in my thoracic region. That pain originates partly from the surgery I had in 2002 to remove my left kidney, but the soft tissue mass that’s invading my back and left side may very well be contributing as well. I don’t know. All I know is that I experience a low level throbbing pain all the time emanating from there and every once in a while I get a pain spike that is intense to say the least. I’m no masochist, so I take pain meds.

Because I’m not on chemo anymore, it’s unlikely the BC Cancer Agency will be concerned with my blood work. But, I’m concerned with it! It’s true that my symptoms should tell us how I’m doing and possibly give us some indication of how much time I have left to live, but blood tests are much more definitive and might give us a heads-up on how my kidney is doing, and how much crap I have in my blood. My GP doesn’t seem too keen on blood work either. Oh well, we’ll see about that.

I guess my biggest concern now is the uncertainty around how long I might live. In a sense it’s not a big concern because I should know when I’m on my last legs, but I may not. At the end I may decline quickly, especially if my kidney packs it in, but I may find that my last few days stretch into weeks or months. Whatever happens, because of the uncertainty, it doesn’t make a lot of sense for me to plan ahead, except in a general sense, for MAID for example. So, I live one day at a time. I get up in the morning and expect that I’ll still be alive in the evening when it’s time to go to bed. I watch news programs on YouTube, but I’m not invested in them at all. It seems as though the world is coming apart at the seams, but all the seeming chaos is moot as I face my own dying.

I can’t believe it’s the end of September. We’re moving into the Fall. The big maple in the front of the house is just starting to turn. The leaves change from green to a pale pink on the underside and bright red on the top. They fall almost in unison and cover the ground with a carpet of pink and red. There is dying in this process, but not death, not yet. The tree is preparing for its winter sleep, and will grow a fresh crop of bright green leaves come March and April. Death is in its future but it’s not for now.

The sword ferns are a different story. They have spores that are spring mounted on the undersides of the ‘leaves’ and that are flung out in a desperate search for a bit of fertile ground to sprout and grow. Chances are that none of the millions of spores will find a propitious bit of ground to grow into a new fern. Not to worry though because the fern itself will sprout new growth come Spring and just carry on. The ‘old’ leaves will turn brown and be displaced by the new leaves. They will create nutrients for the plant as it carries on. There is dying here, but not death, not yet. Death will come much later when the plant itself has no means of recreating itself, when it is exhausted and when the ground that is its home is no longer capable of sustaining it.

We have what’s left of a cascara tree in our yard, about six metres from the south corner of the house. It was a beautiful tree with a sculptural quality and a large canopy when we moved here in 2002. The tree itself was probably ten metres tall. We figured it had been growing on the property for forty years. Then one day it just up and died. The leaves all fell and the bark peeled off in strips. Its skeleton still stands. We hang Christmas decorations on it now. It lost its leaves every year like all the other deciduous trees on the property only to come back strong and vibrant every Spring, until that sad day a few years ago when it died.

Plants aren’t afraid of death and dying. They don’t feel fear. Yes, some people have anthropomorphized plants and have attributed to them human like feelings and motivations. That’s just plain silly in my mind.

Truth is, no matter who or what we are, we die. Simple. But like most animals we fear dying. Trees and plants in general have a different relationship with dying and death than animals do. They cannot flee from threats to their lives. They die every Fall only to be revived in the Spring, but even they ultimately meet their end when they reach the limits to growth. It could be argued that we follow the same trajectory except that we can successfully flee from threats to our lives, at least to some extent.

To me, cancer in old age is natural, and part of the deterioration that many organisms experience in the final stages of life. I love my life, but it must end. My body has decided that its exit from life will be via cancer. How can I argue with that? I tried to argue with it by using chemotherapy, but unsuccessfully. Now, it will countenance no significant opposition. Such is life.

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7 About pain, cold sweats, hallucinations, delayed chemotherapy, rashes and, other fun stuff.

~ Roger JG Albert ~ 3 Comments

[A note: I’m used to writing posts here of approximately a thousand words. Because I’m so fatigued with anemia and other conditions that affect my concentration, for the foreseeable future I’ll make my blog posts a little shorter. That way I will be able to continue writing and not tire myself out too much.]

I started the chemotherapy drugs, lenalidomide and dexamethasone last Thursday morning. I was to take one lenalidomide tablet and five dexamethasone, continue with the lenalidomide for three more weeks and five dexamethasone tablets every Thursday morning until they were done. Frankly, it was a relief to finally get going on a treatment for my multiple myeloma (MM), any treatment. Well, you know what they say about the best laid plans of mice and me. They never go according to plan, and this was not about to become an exception to the rule.

It must have been Saturday (I got a CT scan that day) when I noticed that my butt was getting really itchy. Well, naturally, I scratched it. I knew it isn’t a good thing to scratch an itch, but I just couldn’t help myself. The welts just got bigger and hotter and covered my whole midsection. I developed a slight fever. Carolyn, my very competent care aide spread some lotion on my backside and up under my armpits to relieve some of the itching. Damn good thing too because I was close to losing it.

Well, it turns out that the reason I developed this rash in the first place is that I happen to be allergic to my main chemotherapy drug, lenalidomide. Now, that’s not cool! Lenalidomide is an oral therapy drug, and for that reason is very convenient to take. So, it’s the weekend, I’m itchy as hell, but I persist in taking my chemo meds. On Tuesday, yesterday, I call the oncology nurse in Victoria who seemed quite concerned about the rash. She tells me that she would try to track down my oncologist to get some idea of what to do. My regular oncologist was out of the Cancer Centre at meetings but she tracked down his colleague who told the nurse to tell me to cease taking lenolidomide immediately. So, great. Here I am, not a week into taking my first course of chemo meds and now I can’t take them anymore! What the hell is that all about, universe?

I was pretty bummed out for a time there, but then I realized that this is not an uncommon turn of events in oncology. In fact, about 40% of people enrolled in the lenalidomide/dexamethasone regimen turn out not to be able to tolerate the drugs.

A Cancer Clinic receptionist called this morning to set up a telephone consultation with my oncologist for the 20th, next Wednesday. At that time I should learn more about my next course of treatment as well as what they learned from my last CT scan. Strangely enough, I also got a call from the hospital here in Courtenay telling my that I needed to call them and set up a second course of treatment. She mentioned lenalidomide and I said it’s unlikely that it would be for lenalidomide because in all likelihood, I’m allergic to it and I was told to stop taking it. I guess it takes a while for messages to get from Victoria to Courtenay and back. I soon learned to take all phone calls from the hospital or the Cancer Clinic with a grain of salt and usually wait for confirmation from a third source before moving on with anything.

In my next post I’ll address the fun topics of pain, hallucinations, and cold sweats.

I was going to write a post about the social triage that happens in emergency departments everywhere, and I will get around to that, but for now I have other more pressing issues to deal with. I’m intent on documenting my experiences with myeloma as completely as possible so, for the moment, that will be my priority for this blog. One strange thing that’s happened to me is that I have a recurring dream about the emergency department at the Royal Jubilee Hospital. More on that to come.

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.

2 Multiple Myeloma Makes Me Special!

~ Roger JG Albert ~ 9 Comments

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.