60 So now what? (…and microscopic events)

Thursday, August 13th is the second Thursday since early October, 2019 that I have not taken Bertezomib or cyclophosphamide, the two main chemo meds that I’ve been taking for months. I’m still on a low dose of dexamethasone and now nortriptyline, along with low doses of hydromorphone. My palliative care team is now fully involved in my case because of the Bortezomib induced neuropathy I am experiencing. Oncologists know very little about pain and make no bones about it, as I’ve noted before, nor do most GPs, so it’s up to the palliative care doctors to do what they can to relieve pain. GPs are often left to deal with the pain their patients experience but it’s often a guessing game finding the right palliative. It’s best left to the experts.

As it turns out, hydromorphone may not be the best opiate for me. In fact, it may be exacerbating my pain issues. So, back to the drawing board. We’ll be modifying my pain med regime one step at a time to ascertain the impact of whatever it is we do without crowding the issue by changing more than one med at a time. I can tell you one thing: I’m sick and tired of being in mind-numbing pain all the time.

Frankly, I’m feeling somewhat adrift. I was so used to the chemo regime and now that it’s gone, I’m struggling with what to make of it. So many unknowns as I slide into a time without chemo but with no promise of remission or relapse. I’m sure I’m not alone in this living purgatory, somewhere between chemo and remission. My GP oncologist told me that he would be in touch in six weeks or so to see how I’m doing and, I suppose, to set up a schedule for follow-up blood work. I should be getting blood tests every three months or so to ascertain the state of the myeloma proteins in my blood. Once the proteins start increasing, it’s time to make a decision again about chemo. Sheesh.

Whatever, the bottom line (to use a business metaphor) is that I’m getting ever closer, as we all are, to the moment of my final breath. The closer I get the harder it is to deny it. The difference between you and me might be that I’ve been issued my ticket to ride, stamped and ready to go in the form of multiple myeloma.

No, I’m not immune to the lure of death denial. I’m not anxious to die. I don’t have a death wish. In fact, I have a life wish. But wishing and hoping aren’t going to get me past this one. It’s just so hard to fathom being dead although I can see that it would be a relief from American politics.

Lots of people urge me to be positive and/or stay strong. Well, I’m not curled up in a fetal position in a corner of the living room wailing and gnashing my teeth waiting to die. Still, it’s a bit daunting thinking that, like my parents, grandparents, and all ancestors, I will also be relegated to the dustbin of history, and in the not-too-distant future.

Yes, I stay positive. I’m registered for a webinar organized by the Multiple Myeloma Foundation set for this Saturday at 1 PM. I wouldn’t be doing that if I weren’t positive! The webinar is to inform us about the latest treatments for myeloma and the progress that’s being made to find a cure. Yes, some researchers and scientists are actively looking for a cure. Problem is they’ll never find a cure for death.

Yes, I stay strong, whatever that means. Sometimes I just want to scream about the injustice of it all, but I don’t. I stay calm, but I seethe inside quietly with my teeth clenched. Maybe that isn’t staying strong. I don’t know. One thing for sure is that when worse comes to worse, I won’t hesitate to get zonked on morphine. Suffering is highly overrated. I’m not sure what the virtue is in suffering. You tell me. Is there a reward?

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Okay, so now for something completely different. Some of you will know that a couple of weeks ago I got a microscope that I can use in conjunction with my iPhone. I get some great pictures and video with it. I also have a standard lab microscope that is actually more powerful than my Wi-Fi microscope, but it’s not easy getting pictures with it. The pictures below were all taken with the Wi-Fi microscope and my iPhone. The first three images are pretty straightforward. The others not so much. The first image (1) is of a dragonfly wing. The second is a photo of the eye of a tiny fly. Number 3 is a larger image of 2. Image 3 is of the spore sack of a fern. The 5th is much different.

Don’t get grossed out now, but the 5th image is a very enlarged view of a mole on my back! I know…eweeeew. Weird, eh? You might want to keep microscopes away from your body after seeing this. Number 6 looks very flesh like, but it’s a highly enlarged view of a plant part. I can’t remember which plant or which part. Number 7 is…I have no idea. I don’t recall taking this image, but it’s of some plant part. Reminds me that I have to more carefully document these things, not that I’m doing a systematic study of anything. It’s just interesting to do while I wait for my myeloma to return.

I’m finding some great inspiration for abstract paintings here.

54 Describing Pain can be a Pain.

But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.

Princess and the Fountain.
Puppy. No name yet.

So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.

I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”

Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”

One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.

So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.

Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:

Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.

Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?

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1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.

50 I Really Should Know Better…and Wisteria.

Yes, I really should know better. This is the pattern: I sense a marked improvement in my wellbeing. I start to do things. Maybe I do too much. I injure myself. Now I can’t do much again! Damn!

The problem is that I have myeloma, alright and I’m taking chemo meds, alright, but that doesn’t mean I will be distressed exclusively by cancer related issues. At the moment I’m experiencing pretty severe IT band pain. That means my left side, hip and upper leg are quite painful to the point of preventing me from sleeping. Of course I can take extra hydromorphone to alleviate the pain, but that has its consequences. If I take enough to get to sleep it’s like I have a hangover the next day. That’s not terribly pleasant and I don’t like it.

It’s so tempting, though, to do things! And there are lots of things to do. For instance, even though I shouldn’t be kneeling or getting down on the ground because of the lesions in my femur, I did that anyway while working to fix the irrigation in the garden a few days ago, just one of those things needing to get done. Now my back is chastising me for doing that, and it’s especially gleeful in its chastisements at 3 AM. As I sit here writing this, I can feel the pain slowly increasing in my lower back. I had surgery on my lower back about a hundred years ago, but the scar tissue still causes me pain now and again. Over the years I developed coping strategies to deal with lower back pain, but every once in a while my enthusiasm to get something done interferes with the caution I should be exercising in doing anything physical. I can still do things, but I just have to be smart about it. Unfortunately, sometimes my smarts abandon me and my frontal lobe meekly succumbs to the bullying from my amygdala. Brain wars. This part of my brain says “Yes, do that!” Another part says, “You know better than that!” Which brain part wins is sometimes a toss-up, but more often than not, the do-that part of my brain wins and my lower back sooner or later exacts the price. These days, as I get older and older, the price is exacted sooner than later and lasts way longer than I find reasonable.

I’m just coming to the end of my fifth chemo cycle. Today is a chemo day, but I only take one of the three drugs I normally take earlier in the cycle. So, no dex and no bortezomib. That means no dex high to counteract the cyclophosphamide downer that always happens on chemo day. Bummer. I got to looking forward to my dex days. I got a lot done on my dex days!

Today, I could barely do anything. We went out to the hospital lab this morning to prepare for my visits with doctors next week, then I waited in the car almost falling asleep while Carolyn did some shopping, first at Art Knapps (AK), then at Thrifty’s. I was pretty dozy, but I couldn’t sleep because I kept getting distracted by the parking lot antics of people coming and going from the stores. People coming and going from Art Knapp’s were quite entertaining. Apparently there is a number of people of all ages who shop at AK who can’t read or have attention-deficit issues. The new signage telling people that the former entrance is now an exit-only door flummoxed quite a few shoppers who couldn’t figure out the new rules.

Starbucks at Thrifty’s is still busy it seems. A number of people had coffees in hand as they got back into their cars. I was surprised at how many people came out of the store with only a couple of items in hand. One woman pulled up beside our car in a black twelve cylinder biturbo Mercedes hard top convertible, went into Thrifty’s just to come out a few minutes later with potted flowers, that’s it, just as a classy guy who parked his van across from us (clearly marked with his business name all over it) spit on the pavement every couple of steps he took as he walked towards the store, muttering to himself between spits. So much for shopping only once a week or being super cautious in Covid Times. How could I sleep with all this entertainment going on?

When we got home it was nap time. I slept for two hours. I hope I can sleep tonight after that.

Now, you can feast your eyes on this amazing forty year old wisteria that has a trunk at the front of the deck then snakes around along a structure about 7 feet off the ground for probably 10 metres. It’s beautifully aromatic and frames the table and chairs on the deck.

What better way to finish a blog post. Soon I will post a video of Carolyn’s amazing gardens. There’s no other way to show it off right now, so I’ve polished up my rudimentary video skills and enlisted my basic Sony video camera to put together a 20 minute video. I’m not a great narrator so I’m working on setting it up without talking too much. It’s Carolyn’s birthday on Monday so this video is partly a birthday present for her. Still in love after 47 years. It helps that we’re both a little crazy.

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

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.

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.

26 Interesting Days

Bortozomib Blues

Well, it’s Monday morning around ten o’clock. The last four or five days have been really interesting. Last Thursday I went to the hospital for my weekly injection of bortozemib, the proteasome inhibitor that I take along with my chemo meds and dexamethasone. My bortozemib injections have always left a type of raised, red rash at the injection site on my belly. To try to alleviate the itching and swelling I took fifty mg of Benadryl to try to counteract the rash and swelling caused by the bortozemib. We also applied Benadryl cream to the injection site. The rash doesn’t hurt per se, but it’s super itchy and I feel like I need to reach down inside of the injection site to scratch my insides. It’s very annoying. Probably more important, though, is staying on this course of treatment. We had to stop a previous attempt at treatment with another chemo cocktail because the injections of the drug I was getting during that treatment were causing a huge rash, fiery red and raised, covering most of my midsection. This time I wanted to keep the rash under control so I could carry on with this chemo cocktail.

This past Thursday, the oncology nurses looked at the rash I was getting from my injections (which seemed to be getting worse week by week) and decided to bring in a doctor to see if there was anything we could do to mitigate it. After some consultation, they decided to inject the bortozemib into my right arm instead of my belly. Along with that strategy, they recommended taking more Benadryl. Well, I can say that the strategy was a success as far as the action at the injection site is concerned. There is way less irritation, rash, and swelling at the injection site in my arm than in my tummy. Today, five days after the injection, the irritation is minimal. However, now I had to deal with the effects of increased doses of Benadryl.

I didn’t think I could sleep that many hours straight. Last Friday I was more or less fine during the day and into the evening. We even went out for an hour or so late in the afternoon. Later, at around eight o’clock in the evening, I took fifty milligrams of Benadryl to try to really hit the rash before it got going. Well, that worked. Even though the dexamethasone usually keeps me awake all night, this night was different and I slept all night. In the morning I took some more Benadryl and was less than alert after that. In fact, I was pretty much stoned the whole day. Remember, I’m taking hydromorphone, a synthetic opioid, for pain already. Stacking Benadryl on top of that left me incapable of much of anything, especially clear thinking. Reading and writing were beyond me. Saturday night I went to bed around eight o’clock, fell asleep as soon as my head hit the pillow and stayed that way until seven-thirty on Sunday morning except for a couple of pee breaks. Even then, I was still semi-stoned. Sunday was a day of backing off the Benadryl! We found that the swelling and the rash around my injection site on my arm were not too bad. We applied some ice and that helped calm down the swelling too. Today, the itch is pretty much gone. I’m pretty happy about that.

So, the moral of the story seems to be that I have to get stoned to mitigate the swelling and rash that are caused by the bortozemib. Oh well, if that’s the price I have to pay, so be it.

Lab Work

Today was one of my regular lab days. I have standing requisitions at the lab every two weeks for one set of tests, once a month for another set, and once every three months for a set ordered by my kidney specialist. The techs are getting to know me at the lab in Cumberland. Today I gave up five vials of blood and a container of urine. Later today I’ll be able to access the results of some of the tests online via MyHealth. I’ll do that and carry on here then.

Okay, so it’s five o’clock and I checked my lab results. The few results that are in point to numbers back within reference ranges or in very positive, normalizing trends. Works for me.

Thursday will be another interesting day. We’ll be going to Campbell River Hospital to get my right femur x-rayed and for a consultation with the orthopaedic surgeon. I’m kind of worried about the excavations in my femur. I’m hoping the chemo and the zoledronic acid have done something to stabilize my bone marrow over the past couple of months. We’ll know more next week.

22 The Unrelenting Presence.

Carolyn and I have just finished reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee. The author, an oncologist and Renaissance man, who won a Pulitzer Prize for non-fiction for this work in 2011, masterfully addresses the war on cancer over the past few centuries or so, but with a special focus on more recent events and ‘successes’ relating to specific cancers and new treatments. Cancer, as the books so often argue, is not one disease but lots of different diseases. They all have one thing in common, though: pathological mitosis.

I’m not going to review the book today. I will, though, sometime soon. I’m kind of bummed out right now and not really in the mood to write a long blog post. I took my chemo meds again today. That’s always a fun time, but I’m still confused about just what accounts for how I’m feeling. Sometimes we call these feelings ‘symptoms’ but I don’t like that word much. I’m not sure why. For instance, this afternoon I felt exhausted, and lightheaded, somewhat dizzy too so I went to bed for a nap. As I lay there my body was tingling all over. Is that a feeling or a symptom? If it’s a symptom, is it a symptom of my myeloma, the chemo meds or something else? It’s still tingly, but not as intensively as this afternoon.

I’m bummed, but I should be celebrating, I guess. I had a five minute telehealth conference with my Victoria-based oncologist yesterday morning that’s left me feeling a little empty. For one thing, although he called me by name when we made screen connection (It’s like Skype on steroids), he was not prepared in the slightest for the interview. He asked me how I was doing on a chemo cocktail he had withdrawn me from a few weeks ago. Then he asked me what he could do for me. Well, shit. He then got so focussed on the computer screen he was looking at with my charts all over it that I might as well have not been there. So, I asked him about my lab results. Yes, he said, everything is going very well. The drugs are working. Reason to celebrate, right? Yes, I suppose, but then he says that I had better get used to the shitty quality of life I have because that’s my future. Even if I go into remission. Well, slap me in the back of the head! It wasn’t that long ago that he sat before me and told me I’d regain some good quality of life in remission. Maybe he was having a bad day. Now I was having a bad day too. I felt that this guy needs a talking to about compassion. He rebuffed any attempt I made at personal conversation. He was cold and completely detached. Maybe he was having a bad day but maybe not. Maybe he’s like this most of the time. Then I thought, maybe my expectations are too high. Maybe I should think of him as a consultant, more than as a doctor treating me like my GP would. After all, I see him for five minutes every four months. So, whatever, I’m still bummed out. Distractions like writing, reading, and watching YouTube videos are good for me, but I can’t be distracted a hundred percent of the time. Any break, any crack in my distractions and the dark light of myeloma reminds me in no uncertain terms of my mortality.

Mukherjee is so informative. I learned a lot reading his book. I’m also reading a book on Medieval medicine and even a thousand years ago, ‘doctors’ recognized cancer for the killer that it is, but they looked for the causes in ‘black bile’ and other humours gone bad. Towards the end of his book Mukherjee gets real for me. It’s all fine and dandy to ‘know’ about cancer, to study it, to follow developments in its treatment, but now, cancer has me up close with its unrelenting presence. I leave you with two quotations from Mukherjee’s book. I am these quotations.

“The poet Jason Shinder wrote, “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But what patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

AND…

“Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

Read the book

Enough for now. Maybe I’ll have more gumption tomorrow.