chemotherapy

49 Covid-19 has me tongue-tied. But flowers have me blossoming!

~ Roger JG Albert ~ 6 Comments
Carolyn’s dry creek bed. Tim, our son-in-law helped put this together. This greets us as we walk up the driveway towards the house. I love this scene. It always makes me smile.

Some of my artist friends have remarked that over the past month or so that they haven’t raised a brush to canvas, or engaged in any other art practice. It seems that gardening and cleaning have taken precedence over art production in the past while. For many, isolation, the cancellation of art shows, and slow sales have dampened creativity. That’s been my experience too. I’ve done a little drawing, but the bulk of my time recently has been taken up with cleaning my studio and workshop and doing maintenance projects around the property to the extent that my energy and pain levels allow. I have not written anything in quite some time. My last blog post was about our gardens here and not so much about my myeloma or Covid-19. Carolyn’s gardens have been so uplifting!

That said, Covid-19 certainly has me tongue-tied at least as far as talking about my cancer goes. The myeloma that I’m plagued with seems to have more or less evaporated, at least according to my lab results. It’s still incurable, but it’s likely that I will go into remission by the end of the summer and thankfully get a break from chemotherapy, I’m hoping for a long break. Of course, the oncologists promise nothing and I can understand that. So, it seems, myeloma is not the cause of my current health deficits, rather, the chemo drugs are largely responsible for the many side-effects that I experience every day. Old age, of course, has slowed me down. As Robert Sapolsky writes:

“we are now living well enough and long enough to slowly fall apart. The diseases that plague us now are ones of slow accumulation of damage—heart disease, cancer, cerebrovascular disorders.” (from “Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping (Third Edition)” by Robert M. Sapolsky)

Yeah, that’s me. But, strangely enough, about a month ago I started feeling better. I suddenly got more energy. I could use my shop again and do things I have been unable to do for months. I seriously doubted that I would ever be able to handle tools again, especially chainsaws and the like, but I am. It’s wonderful! It makes life worth living again. I think my improvement is in part the fact that my body is adapting to the chemo drugs.

For some time I seriously wondered if I was not destined for a few more years of moderate to severe constant pain, low energy, dizziness, peripheral neuropathy, bowel issues, irritated eyes, headaches, and various other unpleasant bodily sensations. Death seemed preferable, frankly, although the thought of dying never did appeal to me at all. I may be able to intellectually accept the idea, but the reality of end times is another thing entirely.

Feeling better was such a relief. Then Covid-19 assaulted our lifestyles and sociality to an extreme, and we’re still trying to figure out where we go from here. Confusion reigns. What will the summer be like? Will the kids be going back to school in the Fall? Will we be able to get out canoeing at all this year? These are all open questions with no definite answers.

For a sociologist, Covid-19 and other potential future pandemics are an unintended consequence of globalization and are inherently interesting by that fact. The world has shrunk substantially over the past forty or fifty years in ways that are not readily obvious or apparent. Manufacturing businesses only incrementally moved their production operations off shore. The changes were, and still are almost imperceptible. It’s hard to pinpoint the exact time when refrigerators, car parts, computers, tools, etcetera were no longer produced in North America, even though they are still largely designed here by corporations that still control their manufacture and assembly in places like Wuhan, China sometimes in plants they own and sometimes by Chinese contractors.

This inverter tells the story of globalization. Designed in Canada by a Canadian corporation which owns the product, assembled in China but not made in China (from parts manufactured all over the place).

China has made it easy for them by establishing export-processing zones free of taxes, health and safety regulations and with low wages.

We know the container ships are out there. We know the airlines blanketed the earth with flights carrying both cargo and passengers at rapidly rising rates, and the internet has made just-in-time (Japanese-type) production possible along with the easy flow of finance capital. I can’t imagine there’s any turning back the clock on globalization, but the pandemic has exposed one very serious Achille’s heal of global corporate capitalism. When commodities and people move so easily and necessarily all over the globe in such immense volumes, it’s no big deal for viruses to hitch a ride on unknowing and unsuspecting travellers. The price of cheap commodities is exposure to viral threats that were previously contained in specific geographical areas. Smallpox was not the first pandemic but when it was introduced to North America hundreds of years ago now it killed tens of millions of indigenous people in wave after wave well into the Nineteenth Century. The Black Death in 14th Century Europe probably originated in China and arrived in Europe via new trade routes. It also killed tens of millions of people. We open up long distance trade at our peril. History has taught us that, but we haven’t learned anything from it. Seems we failed the exam.

So now what? Well, a friend (an anthropologist) and I discussed this last Monday evening and we concluded that although corporate America and Canada would love to control the process and the narrative, the more likely issue for business profits will be whether or not individuals like you and I gather up enough confidence to get out there and spend money on services and commodities. If we don’t, or are slow on the uptake thanks to successive waves of Covid-19, business will flounder and will have to rethink a globalist strategy that for decades has laid a golden egg for them. That won’t be easy for a number of reasons, one being that productive capacity has escaped national containment and it’s near impossible to produce a Ford motor car these days without assembling over four thousand parts made all over the world in factories from Mexico to China to Sri Lanka and India. It used to be that Ford produced cars in Dearborn, Michigan from scratch, bringing in all the raw materials necessary in the production of a car and making all the parts on site. Those days are long gone. Can they ever return? Maybe, but the price of vehicles and everything else is bound to rise if the nationalization of production were to be successful, possibly making most vehicles and most other commodities unaffordable to an increasingly impoverished workforce. Catch-22 is real. We’re living it right now.

Thankfully we still have our garden. Here are some pictures for you: The first three images are of the same scene taken a week to ten days apart. The greening has been very fast thanks to ideal growing conditions. The others are just a collection of pictures of flowers I chose at random. Enjoy!

46 I’m sick, but I’m well.

~ Roger JG Albert ~ 11 Comments

I’m writing today to let you know what’s up with me. I still don’t intend to embark on a regular program of blog posting, but things have changed for me over the past while and I thought I’d let you in on the changes to my situation. But first, a bit of a re-cap.

When I was diagnosed with multiple myeloma in early October of last year, I was in pretty rough shape. It became clear to us then that I had had myeloma for some time before, probably for years. Over the past few years I’d had to back away from a number of volunteering gigs because I was too exhausted most of the time to be of much help to anyone. I was not much help around the house and property either. I stopped painting and drawing, and sculpture was out of the question. It was no fun at all. I felt rather useless. And because there was no diagnosis for years, I questioned my own sanity and vitality. The cancer diagnosis was patently not what I had hoped for, but it was an explanation for how I felt and for the pain and exhaustion I had experienced for years before. In some ways, I felt a sense of relief.

Then, in November, 2019, I became a full-time cancer patient. Myeloma became the main focus of our lives. We read everything we could about it online. We went to Victoria for a consultation with the oncologist I was assigned to at the BC Cancer Centre. That trip turned out to be a disaster. Aside from the myeloma that was causing me a lot of pain and distress, during that trip to Victoria I had to deal with a flare-up of a chronic degenerative disk problem, and of the arthritis in my neck I’ve had for years. I can’t tell you how discouraging that was. I was practically an invalid to the point that we asked around to see if anyone had a wheelchair we could use because we figured I’d need one.

The chemo regime I was initially put on caused me to get a huge rash all around my midsection, so my oncologists decided on a different cocktail of meds. This was quite discouraging because I wondered if there was any cocktail of chemo drugs that would work for me. Finally, my oncology team settled on the set of chemo drugs I’m on now. I’ve just started my fifth five week cycle of chemotherapy. I’m scheduled to continue on this program at least until late summer.

At first the chemo drugs kicked the shit out of me. By that time, I was also taking a low dose of hydromorphone, a synthetic opioid, to deal with the pain, and I had to take Dulcolax to deal with the inevitable constipation brought on by hydromorphone. My peripheral neuropathy was extremely annoying in that my hands and feet would constantly go numb and tingly. My whole pelvic area seemed to be on fire at times.

The first three cycles of chemotherapy had me questioning whether or not I should just shut it down and deal with the consequences. I couldn’t see myself living for any length of time in this state of pain and exhaustion.

Then, something changed. I don’t know if it’s because my body has been getting used to the chemotherapy or that the meds have been very effective in dealing with the myeloma. Over the past while, my bloodwork has gradually indicated a complete attenuation of myeloma symptoms. My blood seems to be back to normal and the signs of myeloma have all but disappeared. That doesn’t mean I’m cured, by any means. It just means that I may be going into remission. How long that might last is anybody’s guess. When the myeloma comes back, my oncologist will put me on another course of therapy. That could carry on for years to come.

So, lately I’ve had a surge of energy and I’m now able to do things! Oh, I still have pain and I still get tired, but I can do stuff! For instance, I’ve been able to help Carolyn build boxes for her garden beds and yesterday we rebuilt part of the structure that holds up the massive wisteria we have that surrounds our deck. I even used my chainsaw! If you had told me in January that I would be using a chainsaw in April I would have laughed in your face.

So, yes, I’m still sick with myeloma, but I’m now without major symptoms of the disease, and the hydromorphone is dealing with the pain I still have and will continue to have for the rest of my life. I can live with that. Basically, I’m feeling well. My body seems to be tolerating the chemo drugs much better than over the past few weeks. Some of the side effects of the chemo drugs are quite nasty, but I know how to deal with them now. I’ve become a proficient cancer patient.

Now, if we could only get rid of MARS-Cov-2, I could, we all could, get back to some proper socializing and I could hug my grandchildren again. The truth is, however, that my life hasn’t changed much because of the pandemic. I’m highly susceptible to infection because of the chemo and I can’t be around sick people for that reason. Covid-19 has just made it so that we have to be extra careful.

So, I’m cleaning up my studio and my shop. I’m looking forward to doing some painting, printmaking, drawing, and sculpture. I’m working towards restoring our canoe. The fact that I can even contemplate these things has changed my life yet again. Overall, I’m pretty happy with the way things are going.

The situation in the world is another thing entirely. The irrationality of modern neo-liberalism in the face of climate change and the pandemic continues to cause me consternation and worry. I hope we, as humans, can collectively get our shit together and build a more modest future, one in which we are in tune with each other and the natural world of which we are a part. I know so many good, caring people, but the structures of global capital run deep and are highly entrenched. Ignorance and denial still characterize large segments of the population. Even with the majority of the population consisting of good, caring people, I have no idea how to fight these massive reactionary forces. Covid-19 has shown us that massive changes is possible and desirable for our quality of life, although it’s probably not a good idea to leave desired social change to the recurrence of deadly pandemics.

40 Two Days in my Diary: Saturday morning addendum.

~ Roger JG Albert

6:15 AM Saturday March 21st.

I probably should have included Saturday in my original post from yesterday, because it’s also a down day due to my chemotherapy treatments. I had another dex night last night. I got my usual acid reflux but it came much later than usual, around midnight, and lasted until around 5 AM. My tinnitus is about as bad as it gets right now. I slept, I really did, for a couple of hours between 10:30 and 12:30, then I got up to pee. I sort of slept again until 2 PM but that was it. I woke up startled by a very odd dream. So I listened to some music and read some Fernand Braudel about Medieval Europe while I tried to process this weird dream I had just had.

I woke up at 2 AM in a sweat. That’s not unusual either in the first three days after taking my meds, but this time, like I just said, I woke up from a very strange dream. I wouldn’t say it was a nightmare; it was much more matter of fact than that and it was very vivid.

So, in my dream I invented a portable guillotine. It was portable with a blade a metre long and 30 centimetres thick and sprung like a chop saw. It looked more like the cutting end of a pair of garden sheers than a traditional guillotine but it worked like a guillotine. I invented it to cut up yard waste like sword fern fronds and twigs, that sort of thing. I think it’s because yesterday Carolyn worked in the yard doing clean up and she cut up a lot of sword ferns to the ground. I guess I invented this ‘machine’ to chop up these fronds to make them more compostable rather than take them to the dump in the trailer. In any case, it worked well, but then someone stole it from in front of my workshop one night. I was pissed off but resigned to just building another one. Then the neighbours started reporting that dogs and cats in the area were turning up decapitated. I figured whoever had stolen my guillotine could easily be doing this. I was mortified. Then I wondered if we’d start finding people decapitated, maybe up the logging road. Now I felt really shitty. All of that mayhem was my fault for inventing such a dangerous tool. Then I woke up.

I’ve been wracking my brain to try to wring some significance out of this dream but I can’t seem to figure it out. I invented a dangerous tool for a good cause but then found it used for very destructive purposes by person or persons unknown. What can I make of that?

In any case, today will be strange. I’ll probably have to sleep much of the afternoon after I completely come down from my dex high and am left to deal with the fallout from the cyclophosphamide and bortezomib. For my headache I’ll take a couple of Tylenol. Strange, but my peripheral neuropathy is attenuated at the moment. I wonder how long that will last. The burping is driving me nuts!

By the way, I came up with my epitaph. It goes like this:

Here lies a man who did a lot of bad things in his life.

Here lies a man who did a lot of good things in his life.

At the end he hoped it all balanced out and he would

Neither go to heaven nor to hell. He, he, he. 


Have a nice day.

39 Two Days in my Diary

~ Roger JG Albert ~ 16 Comments

8:00 AM Thursday, March 19th.

On Wednesday we went to the hospital to see my local oncology GP. We reviewed my lab results and my progress to date and he was very positive about how things are going. It looks like more chemo for me until at least September, then off of them for three months after which I get bloodwork done again to see how things are going. If everything is okay we carry on for another three months. If the myeloma is again active, they’ll put me on another course of chemotherapy. He said that we should consider my disease more like a chronic disease, diabetes say, rather than as a virulent, deadly one. So, that’s all good, but I still have lots of chemotherapy ahead of me and that’s no cake walk.

In this post, I want to give you a blow-by-blow idea of what happens to me after I take my chemo meds on Thursday and Friday. I would love to hear from any of you who have had chemo so as to compare our experiences.

I have just made it so that anyone can comment on my posts. You don’t have to be a registered WordPress user to comment! Yay! Give it a try please!

Today is a good day so far. That will change in a while when I get my chemo meds. Oh, I have some joint pain and fatigue, but that’s my new normal anyway.

11:15 AM

Off to the hospital to get my chemo meds for the next four weeks along with a bortezomib shot.

1:20 PM

This time they wouldn’t let Carolyn come with me to the Cancer Clinic so she waited for me in the car. That’s because she had a cold and they’re rightfully paranoid about Covid-19. We drove home from the hospital carrying my load of pills to take for the next four weeks. I take 13 cyclophosphamide and 5 dexamethasone once a week on Thursdays. We had a bit of lunch a while ago and I’m starting to feel the effects of the meds, but not intensely yet. Tingling body is always where it starts. Today I decided to sleep off the afternoon hoping to cut off some of the worse effects of the meds.

4:30 PM

I’m actually feeling pretty good after sleeping for most of the afternoon. I’m lightheaded, that’s for sure, more than yesterday, so it’s started. The dexamethasone is starting to take effect. I’m feeling tingly all over. It’s still too early to assess how dex will affect me today. The dex effect has changed over the past few weeks. My body seems to be tolerating it better. I’m not getting the crazy twenty coffee high I was getting earlier during the first two cycles of treatment. My stomach is unsettled as it has been for the duration of my treatments. It’s a very odd sensation. Urination is still a problem although not as severe as early on in my treatments, so we’re thinking that the antibiotic might have done something, but we’re not sure. I checked to numbers from my last blood tests and my ferritin levels have dropped from over a thousand to now under six hundred. That’s great news because it does indicate that any inflammation I have had is decreasing. That said, my Lambda Free Light Chains (you have them too) are increasing and I’m not crazy about that. We’ll see what my next lab tests show. If they go up some more, I’ll be really pissed.

8:00 PM

Dex is starting to do its thing. ‘Sleep’ will be interesting tonight. I just took my usual bunch of pills but I’m taking two Benadryl tablets to counteract the usual itching and swelling around my bortezomib injection site. I’m also taking a Dulcolax tablet to counteract the constipation that comes with hydromorphone. That seems to be working. The burping has started but isn’t severe yet. That will come tomorrow. I’ll save more entries here until tomorrow. I’ll be in bed soon in any case.

8:00 AM Friday March 20th

So, last night was a dex sleep meaning that it’s a sort of sleep or at least a state akin to sleep. It’s hard to explain. I feel that I haven’t slept at all. Looking at the clock every fifteen minutes or so seems to confirm that but I may be dreaming all of that. I don’t know. I think the Benadryl is helping me counteract the dex, but I can’t be sure. I’m wide awake this morning having got up at 6:45 after Princess (the cat) came to me screaming for food. I ignored her, but it was too late. No point in staying in bed. I’m having very interesting experiences with pain lately too and this morning is no exception. I have pain spiking here and there but nothing constant. It usually comes when I move so I just sit still a lot! I know I have to get up and move around, and I do, but I then pay for it later. Last night I had no issues with my peripheral neuropathy (extremity pain and numbing) which is unusual. Usually peripheral neuropathy keeps me awake or tossing and turning. I’ll do more stretching today to see if that helps with that in the coming week. I’ve been doing a fair bit of stretching for my neck and back pain and that seems to help my peripheral neuropathy. Burping has resumed. Fuzzy head…not too severe yet, blunted by the dex. I find it fascinating to observe what’s happening to my body as I go through cycle after cycle of chemo. The effects change every time, sometimes drastically, sometimes almost imperceptibly. The interactions between the various meds I’m taking make it difficult to trace drug to effect. I’m trying to relax as much as I can. Stress doesn’t help. I think I’m doing okay on that front.

10:30 AM

The dex is starting to really kick in now. Elevated pulse rate and feeling very lightheaded. Overall, though, because I know what to expect I’m not getting stressed out. I feel it’s so important for people in chemo to very carefully track the effects. It’s so important to read the information sheets that come with the various drugs we take. In the case of my urinary issues, I called my GP with what are classic urinary tract infections (UTI) symptoms but only after Carolyn read the information sheets urging us to call in if we have signs of UTIs. We have to keep on top of it because I can’t afford to get an infection of any kind. Now I’m getting the shakes too. Par for the course. Time for tea.

12:25 PM

Well, the dex has kicked in with a vengeance. My cheeks are flushed, I’m hyper yet exhausted, unsteady on my feet, but we’re going to have lunch up by our pond. Yes! I can still write, but who knows about later today or tomorrow. Then, I may be good only for watching YouTube videos about people rebuilding their old sailboats, or doing woodwork, sometimes both. It’s all very exciting. I haven’t seen any videos yet on watching paint dry, but it came close on a video about somebody applying bottom paint to their sailboat a couple of hours before it was to go back in the water after being on dry land for weeks.

8:00 PM

Dex is still with me but now I’m feeling really exhausted so I may sleep better tonight. I generally sleep quite well. Dex nights (Thursday nights) are exceptional. I’ll be taking my meds now: Hydromorphone, Benadryl, and Dulcolax. It still burns when I pee and I have to pee often. My eyes are burning but that’s probably as much an effect of age as it is of the chemo. I’ve got the shakes still, probably until well into tomorrow. Pain is manageable. Exhaustion inevitable. I’ll go to bed in an hour or so, do a bit of reading then sleep (I hope). Goddamn burping! So annoying.

AND please comment! Especially those of you who have had chemo treatments in the past. You can do so now without being a WordPress user.

28 Moving on up.

~ Roger JG Albert ~ 6 Comments

So, I’m over the shock of my cancer diagnosis. It’s been four months, after all. That doesn’t mean I’m happy about it, but it does mean that we (and I have to include Carolyn in everything here) have moved on from the initial storm of emotions around the diagnosis to settling in for months of chemotherapy and complete disruption of our lives. We are moving into a new routine. Every day is almost predictable, at least for now. I can’t say that I’m bored at this point, but I certainly am getting restless. I’ve gone down to the studio a couple of times lately and poked around. I really do miss drawing and printmaking. I want to get back to them soon and I really want to finish a small sculpture I started last year. Problem is I’m so exhausted all the time.

Not all people with cancer have the same reaction to the disease itself nor to the chemo meds and the opioids. Not all cancer patients are anemic all the time and I’m told that not all experience a lot of pain or the exhaustion I’m feeling. Every cancer is different and close to two hundred types have been identified. Breast cancer is the most common followed by lung and prostate cancers although there are several different varieties of all three types of cancers. Multiple myeloma is very uncommon and is the rarest of the blood cancers. Lucky me.

This morning we saw the local oncology GP and he told us that everything is going well with my therapy but that for the third cycle starting tomorrow they will be punching up the cyclophosphomide (the main chemo med) to one hundred percent. I didn’t know this, or I forgot, but I haven’t been up to full dose on this chemical yet. The doctor said that they started me off slowly to ensure that I could tolerate the shit, but now they were going to have to ‘challenge’ me. I have no idea how that is going to affect the side effects I am inevitably going to get except to amplify them. Yep, that’s what I can expect, amplified side effects. Yum.

I also learned this morning that I have six more chemotherapy cycles before they can consider whether or not I’m in remission. That means I will know by late August or early September. Oh well, I didn’t want to do anything this summer anyway, now did I. The way I’m feeling at the moment, I’m thinking that I might be able to get out on some short excursions come the sunnier, warm weather, but laying about the back yard by the pond sipping a cold drink doesn’t seem so bad either. Today is the last day of my previous cycle and the best of the whole lot because I’ve had a bit of a ‘holiday’ from my meds. Tomorrow, I’m back in the trenches with full-blown cyclo, dex, and bortozemib. I had an infusion of zoledronic acid today too, that’s a bone strenghtening drug. It gives me a raging headache so I take a couple of acetaminophen to help deal with that.

I have to get back to the hospital in a couple of hours for a CT scan of my right femur and cervical spine area. My orthopaedic surgeon wants to check my cervical spine for any changes in my degenerative disk disease and arthritis, my other nemeses. He also wants to determine if the excavators in my femur are in any danger of breaking through the bone or not. I’ve been experiencing more pain in the area lately and he wants to stay on top of that. Good for him. I like his attitude.

Enough for now.

24 My Brain Hurts!

~ Roger JG Albert

We went for a walk this morning around the airport on the River Walkway in Courtenay. It was overcast and coolish, quite pleasant as far as weather goes for this time of year. The ducks are getting up to their mating ways and even the redwing blackbirds have started singing. I think one or two of them may be rushing it, trying to get a head start on the mating action. It’s a good walk for me because it’s flat and paved. I’m still not that steady on my feet and I’m not sure about that lytic lesion in my right femur that lately seems to be getting a little more ‘present’, insisting that it not be forgotten.

My brain, frontal lobe really, also insists that it not be ignored. It tells me that it needs more and more information about the bad boys excavating my bones, crowding out and bullying the good boys that are working hard to make hemoglobin for me. It threatens never to let me rest until it’s satisfied, and from what I can tell, it’s a long way from being satisfied. I have been feeding it, though. It’s not being ignored even though it does sometimes have to take a seat and wait until other parts of my body are willing to participate. My amygdala is pretty insistent these days. The various parts of my brain don’t always want to be nice and play together. Some days they are more likely to coöperate, generally those two or three days, Mondays to Thursdays, just before I get a new load of chemo drugs on Thursday mornings. On other days, organized rebellion reigns. Thursday evening is my hyper time, no sleep. Fridays are a mix of hyper, lightheadedness, dizziness and near disorientation. My whole body tingles and my feet are somewhere between freezing and very cold. Saturday my bortozemib injection (which I get on Thursday at the hospital) site on my stomach starts to get inflamed and begins to itch. I have to take antihistamine to counteract that, but I’m a bit worried that the inflammation is getting worse with every injection. The area around the injection site gets very hot and red, and itchy beyond description. This is when Carolyn and I pore over the literature on the various drugs I’m taking trying to get a handle on what I’m experiencing in terms of side effects and indulging my frontal lobe with a bit of a snack. From what my oncologist told us in our last interview, I could be on this particular chemo protocol for at least another six months so I’d better get used to it. Of course, things constantly change as we go along so past experience is not necessarily a good measure of what I can expect in the future. Right now, getting ‘used to’ anything seems like a little far-fetched.

Thankfully, there are periods of time when I can sneak in a bit of reading and even some writing. It’s a good thing that I write fairly quickly because I often am too preoccupied with my symptoms to concentrate for any length of time or keep a train of thought going. My trains of thought are always getting derailed. Generally, if I get an hour or so of reading or writing in at a time, I’m happy. That works for me because what the hell else have I got to do?

Lately I’ve been reading a variety of things. I get a bit overloaded with books, articles and other materials dealing with cancer every now and then and that’s when I pick up a book on Medieval Europe. Right now I’m reading a book called The Myth of Nations: The Medieval Origins of Europe, (2002) by Patrick J. Geary. It’s an easy read. Just right for bedtime. The composition is a bit clunky and Geary probably needs a better editor, but eventually he makes his point, not that I’m going to discuss it here. The books, reviews, and reports that have claimed most of my attention lately have been on the topic of cancer. Too bad I wasn’t reading them on a nice beach on the Tropic of Cancer. 🙂 They are important for feeding my frontal lobe.

I mentioned in a previous blog post Barbara Ehrenreich’s book: Natural Causes. It’s polemical and iconoclastic to the core. I love Ehrenreich for the way she hounds the medical profession and business for excesses of enthusiasm for making money at the expense of the quality of life of patients. In this book she rails against overdiagnosis, a point to which I return later, and the false emphasis on building the immune system to fight cancer and other serious illnesses. She notes that macrophages, special white blood cells are an important aspect of our immune systems in that they attack and destroy invading bacteria and other infections at wound sites. The problem is that they can also provide cancer cells with conduits for metastasis, creating the means by which cancers can spread to distant parts of the body. She argues that we shouldn’t be such cheerleaders for our immune systems because they could very well be traitors in our midsts.

I just finished reading another of her books: Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America (2009). This book trashes one of the most iconic delusions of American life, the power of positive thinking. In Natural Causes she applies this idea to medicine, the wellness industry and cancer treatment when undue optimism detracts from realistic appraisals of health and illness. She argues that from the perspective of wellness and mindfulness whereby we have control over our bodies, every death is a suicide. The argument goes that if we control our bodies with our minds and we die, it must mean that our minds wanted us to die! Well, there ya go. I guess mindfulness has its limits. Ehrenreich is not too keen on negative thinking either though. She argues for critical thinking, not positive or negative thinking. Fair enough.

The book that is most relevant to cancer is one that I quoted from in my last post. It’s called The Emperor of all Maladies: A Biography of Cancer (2010) by Siddhartha Mukherjee. It’s a sweeping analysis of cancer detection and treatment over the past few centuries. Of course, most of the cancer action has occurred over the past few decades and many of the protagonists in the book are still alive. Mukherjee interviewed many of them for his book, bringing to life the stories he tells about the development of cancer treatment drugs and protocols. I had no idea that there was such a divide between clinicians and scientists in the cancer world. Biologists and other scientists, Mukherjee notes, have often been at odds over knowledge and treatment. Oncologists want to treat patients. Scientists want to know more about the disease and its genesis. What’s clear is that cancer treatment using surgery, radiation and chemotherapy has moved ahead in leaps and bounds in the last thirty years. ‘Success’ in treatment, often measured in months of survival, has grown exponentially over the last three decades. Drugs called ‘biologics’ are increasingly used to target specific types of cancers in certain types of people. In other words, cancer treatments are becoming more individualized, more targeted. This is all very encouraging, especially for someone like me who has cancer. However, there are problems and the sky ahead is not without clouds.

That’s the topic of my next post. This one’s already long enough. Stay tuned.

12 So it begins…

~ Roger JG Albert ~ 4 Comments

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

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

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

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

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

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

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

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

More tomorrow if I can.

9 Grinding It Out

~ Roger JG Albert ~ 6 Comments

My oncologist called this past Wednesday to discuss changing my chemo cocktail. The one I had been on for less than a week caused a very bad rash around my whole midsection along with a mild fever. So, I stopped taking that set of meds and am now waiting for word from the pharmacy here at the hospital telling me that my new meds have arrived. I’ve got appointments lined up for the first week of December, but I may be called to come in earlier. It’s all par for the course. Hurry up and wait.

Thing is, this new set of meds has caused some pretty significant side effects for a couple of people I know with myeloma. We’ll have to keep a close watch on symptoms, especially those related to peripheral neuropathy. Can’t say I’m looking forward to the new meds but then again, I’m not too sure what the alternatives would be. I’ve sometimes thought about what would happen if I turned down any and all chemo. I know that there are drugs that are more palliative than chemo and I seriously wonder how many more years of good quality life I could get out of benign neglect rather than with aggressive intervention. These are just things I think about late at night when I’m falling asleep along with visualizing my death bed.

I’ve been reading Barbara Ehrenreich’s book Natural Causes. She’s a couple of years older than me and had a malignant tumour removed from a breast some time ago. She’s fit, she’s healthy but she also writes that: “I gradually came to realize that I was old enough to die.” She means that she’s had a good life, a fulfilling life, which is much more than is afforded many of us. She notes that the military considers eighteen year olds old enough to die and that there is no ‘best before date’ stamped on our asses. Some political leaders lead well into their eighties and nineties. That said, there is a time, when we reach seventy or so years of age when our obituary is likely to read “died of natural causes” than anything else. At a certain age, she argues, there is no need for an explanation for dying. It’s okay to die. Of course we should expect to die. Dying is as natural as being born although we generally consider it a travesty and a high order insult to life. I visualize myself dying, but I’m not convinced that the visualization can ever be very accurate. The closest I can come to visualizing the end of my life is when I’ve had a general anesthetic. Under a general anesthetic, the first drug they administer puts one under, makes one unconscious. If that’s the way I’m going to go, I can live with that. I watched as they put our last dog Wilco down a year ago August. First the sedative, then the lethal dose of whatever it is that kills. That kind of end would be fine with me. If I have to do it, and I don’t see any way out, this is what works for me.

Pain is an entirely other matter. I’ve had too much of that in my life and I don’t want to die under a heavy blanket of pain. Some pain would be alright, but nothing overwhelming. No pain would be the best, but that’s asking a lot of this aging, crumbling body to deliver. So, I’m willing to compromise and accept some pain when my dying time comes. I watched my mother as she lay dying in her nursing home bed almost two years ago now. She had Alzheimer’s and was unable to communicate at all verbally. She did communicate her pain, however. She was under high doses of morphine but we could tell when the morphine would wear off because she would get more and more agitated. I have no idea what she was experiencing, but I have the strong sense that it wasn’t at all pleasant. I was not there in her room when she actually took her last breath but as my sister recalls it, it was all fairly anti-climactic. Chances are very good that I won’t follow my mother’s example in death. For one thing, with myeloma I’m not likely to live long enough, and for another thing, I’ll probably still be sentient and able to make some decisions myself about my own death, unlike what happened to my mother. My mother was a very fine mother, cheeky as all get out sometimes and able to maintain a sense of humour before some pretty daunting odds at times. Dementia robbed her of end of life quality of life. That’s a shame. One of my sisters died a few years ago. She was four years older then me and had lung cancer. She was sentient for most of the time or her dying, but I wasn’t there when she finally gave up her last breath. I was a ferry ride away and unable to make it. She died a half hour before I got to the hospice centre where she ‘lived’. I know one thing for sure. She was pumped full of morphine for some time before she died and that effectively shut down her ability to decide anything.

Lately I’ve been experimenting a little with my pain meds. I’m on a large dose of hydromorphone (not related to morphine- a lot stronger, actually) taking two 1mg pills every four hours. I tried to back off some and take a lower dose every four hours for a day. I felt I could probably manage that because my pain was pretty much under control. Mistake! My pain is under control because I’m taking shitloads of hydromorphone. When I tried to back off, pain started to come back in my neck, ribs, right pelvic area, legs and shoulders. I knew that if I didn’t resume my twelve mg pill load a day that I would soon be completely incapacitated and bedridden. The decision was a no-brainer, but I was hoping for a better outcome.

One of the issues, of course, is that I haven’t really started treatments yet for multiple myeloma. I’ve been diagnosed and all that, but I haven’t had any chemotherapy to mitigate the effects of the disease, so it may be that in a few weeks or months and I go into remission that I’ll be able to back off my pain meds successfully. Wow, that would be cool. For now, I’ll continue ingesting lots of hydromorphone and maybe indulge in a beer or two, maybe even a tiny bit of scotch. It’s okay, all my specialists say a couple of beer are ok. I didn’t ask them about the scotch.

One (or more) of my readers here have suggested that I don’t swear anywhere near enough in my narrative. Well, fuck that! I’ll swear if I want to, swear if I want to, swear if I want to. You’d swear too, if it happened to you! (Figure out the song this is based on). Fuck!

8 Tread lightly, you could break a bone!

~ Roger JG Albert ~ 7 Comments

I told you in my last post that I had gotten a skeletal CT scan a week ago Saturday, November 9th. I know what these scans are looking for and I was somewhat apprehensive about getting the results. I still haven’t heard from my oncologist about the scan and I won’t be talking to him about it until Wednesday, the 20th. However, my GP called me on Friday the 15th at 5:30 PM to talk to me. Truth is, whenever my GP calls at 5:30 on a Friday evening it’s never good news.

The first question he asks me is if I’d heard anything about the scan. I said no, nothing. He then proceeds to tell me that I have a four centimetre tumour (lesion) in my right femur. Now, that’s a fairly large lesion but it’s in a fairly large bone too. Still, one of the main problems with multiple myeloma is bone lesions. Patients can have several bone lesions simultaneously making their lives somewhat precarious. Any wrong move can lead to broken bones and immobility.

My GP is rightly concerned about this femoral lesion and tells me that I may need a full length splint to keep my leg immobilized but it’s Friday evening now and I’m in no shape to even consider getting one, especially if it means going to the ER. That’s not going to happen. Not in a hundred years!

After a time my GP and I settle on a plan to keep me more or less immobilized, at least until Monday. Carolyn and I get back to our dinner. A while later my GP calls again after having consulted with an orthopaedic surgeon. The surgeon tells him that I will probably need radiation on that tumour and that radiation treatments happen in Victoria. Until then, I need to keep my right leg as immobile as possible. We’re getting a wheelchair on Tuesday. That will help, and on Wednesday I talk to my oncologist about where we go from here in terms of chemotherapy and now radiation treatments.

You know what? I want some straight answers. That’s all. I know that straight answers are not as easy to come by as they should be, but I’d like a clear, unadulterated assessment of my prognosis at the moment, if you don’t mind. So far, my oncologist and I had not even discussed bone lesions and the treatments for them, and we assumed that the lenalidomide/dexamorphosone chemotherapy drug combination would work and that we would reassess in a year or so.

Yes, I understand that multiple myeloma is highly treatable although it’s incurable, but every myeloma patient presents with an idiopathic set of conditions making blanket prognostications about remissions and potential lifespans kind of useless, if not overly optimistic. So far I have no idea how bad a case of myeloma I presented with and my oncologist is not really interested in what stage I’m at. He says he’s much more interested in how a patient responds to treatments than where they might be on a staging continuum. That’s fine. I hope that sometime soon we will actually be able to assess just how I’m doing on a new course of chemotherapy drugs and that we will be able to conclude that what I’ve experienced so far is a temporary glitch in my treatment.

Whatever. I like taking road trips on winding roads in unfamiliar territory, but a nice stretch of open highway now and again can be exhilarating too. I’d like to see some open road for a change where obstacles can be seen a long way off and I can put the petal to the metal. Is that too much to ask for?

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.