Fun With Meds.

I’m finally able to write a few paragraphs. My neck has been such a problem lately that I haven’t been able to write much or draw and paint much either. It’s because my neck gets spasms easily if I look down at the computer screen for too long. Ten minutes at a time is about all I can handle. However, I remembered that acetaminophen works quite well for neck pain. I took a couple last night for my arthritis and degenerative disks in my neck and that seemed to help. I took a couple at around 8 AM this morning and now, although I still have neck pain, it’s manageable. We’ll see how long it works. I want to go outside and play.

Funny how I used to take acetaminophen regularly for some kinds of pain and it worked marginally well. Then I forgot about it when I got into stronger meds after my cancer diagnosis. Hydromorphone is my go to pain reliever now, but I’m also taking a low dose of gabapentin on the advice of my palliative care docs.

Palliative care docs are specialists in pain management. They often get linked with end-of-life care, but their mandate is much broader than that and is tied to pain management generally. We talk every week, usually on Wednesdays always working to fine tune my meds to balance pain with my need to be able to do some activity. Of course, as my pain doc told me this week they could easily make me pain free. I’d be pretty much catatonic though so we’ll probably save that for when I’m closer to dying. No, the objective with my pain docs is to balance pain management with quality of life.

I must say that lately it’s been a bit of an odd dance. We tried nortriptyline but it made me excessively sleepy without doing much to lessen my pain levels. We tried a really low dose of gabapentin. That hasn’t seemed to have worked very well so we’re now increasing my dose of gabapentin to a bit of a higher dose to see if that makes a difference. That’s always on top of my basic hydromorphone slow release tablets that I take morning and evening.

I suggested to my pain doc yesterday that I should just go off of all pain meds to just see what happens. She said that I probably shouldn’t do that because the pain would be unbearable without some intervention. I have to agree, but it’s frustrating. It’s hard to know which med is doing what when I take a cocktail of meds. It would be simple to back off to just one med, but that wouldn’t work either because as I noted before, neurological pain is different from muscle pain with is different from bone pain, arthritis and disk disease. I need different meds for the various kinds of pain I have so a cocktail is required. Simple would be nice, but it’s not practical.

So, I sit here now banging away on my computer keyboard. My neck pain is manageable but really annoying. I’m hoping the increased dose of gabapentin will deal with the neurological pain I have in my legs, but we’ll see. It takes a while to kick in. I’ve had two MRIs this week. The first one was on Monday and imaged my lower back. The one yesterday was for my upper back and neck. I’m not sure how they may help with diagnosis or with determining what drugs will work for me, but at least they will give us a good baseline for subsequent tests.

I’ve been thinking a lot lately about the time I have left. I have incurable cancer so it’s like I’m on death row waiting to see if my next appeal (chemo course) works or not. I’m technically in remission right now. We’ll know in January how that’s going. I’m scheduled for blood tests on January 5th, the day after my 74th birthday. That will mark seven months that I’ve been off of chemotherapy. I hope those little bastard myeloma proteins take a long vacation and I can stay off of chemo for a while longer.

Inevitably though, chemo won’t work anymore and that will be that. Bring on the morphine and call in hospice and MAID people at that point. When I get to the point that I can’t DO anything anymore, I will probably welcome my exit from this mortal coil. The thing I regret is putting my family through a long, prolonged, slow exit. Maybe it would be better to pull the plug sooner than later. But I’m not ready to make that decision. So, we carry on, balancing meds, counting on chemo to beat back the myeloma proteins when they get out of hand, and hoping for the best.

I haven’t written at all about politics lately. I’m tempted to, but my neck pain may decide how much I can write, draw and paint. Politics is fun, but it’s not at the top of my list of priorities at the moment. Cancer has a way of focussing my attention narrowly on my life and possibility. I’m still interested in BC politics, Trump, etcetera, but they just aren’t centre of mind like they used to be for me when I was teaching. The pandemic is close to mind too, of course. I’d love to see my family as much as I can. Covid makes that impossible. Cancer and Covid are dominating my life right now. Not the best of scenarios, but I do have Carolyn to commiserate with and to share my Covid isolation.

I’m not sure how we can talk about happiness in the circumstances we are in. I’m not happy about any of this shit but that doesn’t help much either. It’s just that how in hell can anybody be happy right now?

#67 Remission!

I spoke with my new BC Cancer Agency oncologist yesterday. We had a nice chat about our alma mater and the weather, but we also discussed my myeloma. Of course we did!

He told me that I am effectively in remission. There is no trace of the myeloma protein in my serum. That, I would say, is great news. That doesn’t mean that I don’t have cancer anymore. Myeloma is incurable but it is treatable. The hope is that I can go some time without needing chemo.

While I don’t have any trace of the myeloma paraprotein in my serum, I still have issues related to myeloma and I have to live with the side effects of the chemotherapy I was on between December 2019 and June 2020. I have lots of peripheral neuropathy or nerve induced pain and weakness in my legs. I also have back pain for which I need to take opioids. My oncologist has ordered a spinal MRI to see if we can pinpoint the specific cause of the pain. I do have residual pain from surgeries I had on my lumbar disks and from the removal of my left kidney in 2002 because of kidney cell cancer. To help us figure it all out I have pain specialists (palliative care doctors) on the job. With them, we’re trying to determine what kinds of medication I need to take and how much.

It’s complicated because there is some pain that is muscular in origin, other pain that comes from problems with connective tissue and then there’s nerve-induced pain. Different meds are required for the different types of pain. For example, opioids aren’t much good against neurological pain but they work on muscle-based pain and to some extent on connective tissue pain. Right now I’m on two main pain medications and a couple more on standby. Hydromorphone isn’t much good for neurological pain but it works for my back pain although the dose is critical. My age is working against me too. It’s normal in ageing to have weakened muscles and degenerative connective tissues. My body is ganging up on me! But I’m fighting back!

One thing I aim to do is increase my physical exercise as much as I can. That means walking more. I have to be careful because my balance isn’t great, but I can walk maybe two kilometres a day using one or two canes. I can also, on rainy days, use our semi-recumbent bike for twenty minutes a day. We also have light weights I can use and stretchy cables (?).

That’s enough for now. I just wanted to give you the good news. Today is such a great fall day. This red maple in front of the house is living up to its name. Every day it gets redder, then it seems like overnight all the leaves are on the ground.

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AND, haha…there’s a snowfall warning for tonight and Friday morning at higher elevations (which could mean Cumberland). ❄️🌨❄️❄️❄️⛄️ Sleep tight!

#65. Musings, Flowers, and In Memoriam.

Musings

It’s October 5th, 2020. That means it’s pretty much a year since I was diagnosed with multiple myeloma. I expected that this month would be my last one in my first course of chemotherapy. As it turns out it was not my last month because I decided a couple of months ago to forgo my last two cycles of chemo treatments because of the neurological damage I was experiencing. Chemo was doing away with the myeloma protein in my blood but it was also killing me. That’s not good, so we decided to stop.

Who knows what happens now. I went to the lab last week for some blood tests in anticipation of visits with oncologists later this month. I have the results: they show that my Lambda Free Light Chains (a type of blood protein that is used as a marker for myeloma) are trending up, now out of the zone the medical profession has decided is the reference (some would say, normal) zone. That is not good news, in my opinion. The increase in my Lambda Free Light Chains hasn’t been dramatic, but it sure concerned me.

I contacted Dr. Malcolm Brigden’s office in Victoria. Brigden is the oncologist assigned to me by the BC Cancer Agency. His assistant, after consulting with the good doctor, advised that there was no clinical reason for me to have my meeting with said Dr. Brigden brought forward as I had requested because Light Chain numbers go up and down all the time.

That’s not what I’m seeing in the test results but I’m no oncologist. Still, I’m seeing a definite trend in one direction.

So we wait until October 21t to drive to Victoria for a fifteen minute appointment with said Dr. Brigden. The issue for me (for us, including the family) is where I’m at in terms of treatment. Brigden will decide what to do now that I’ve been off of chemotherapy for three months. He may decide to do nothing and wait for my next set of blood tests. He may decide to get me started on another course of chemo. I expect he’ll choose the former, that is he’ll choose to do nothing and wait for test results three months down the road. Whatever. I have some research to do about how Lambda Free Light Chains react in remission but before a new course of treatment is initiated. You may detect a note of cynicism in my composition here. If you did, you’d be right. I’ve read a fair bit about oncology, both the research and clinical aspects of it and I can’t help but feel that clinicians are all over the map in terms of treatment options and approaches. There are no real standards in the field. That is partly due to the idiopathic nature of myeloma. There is no one treatment option for patients in relapse.

I guess I need to be patient. I find patience a little difficult to achieve these days, but I need to cultivate a ‘letting go’ approach to this ‘problem.’

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In Memoriam. Thinking of you.

Sarah Kerr died on October 3rd after maybe six years of suffering with colon cancer. In 2018 she gave an interview to the Comox Valley Record in which she claims to have had over 60 chemo treatments over the previous five years. That’s just not the way it works for myeloma. I got one over the last year. In the same interview she reports on various different alternative therapies she tried including vitamin C infusions (@$200/week). Her quality of life was severely affected by her chemo treatments.I didn’t know Sarah very well. She was more of an acquaintance than a friend. I knew her from my pre-retirement North Island College days with Sarah making pots and just generally being around the Art Department. She was a Facebook friend too. We had a large number of FB friends in common.

The last time I spoke with Sarah was a few weeks ago on my way into the Cancer Care Centre at the hospital here. She was just heading out after a treatment. Neither of us had much time to chat. Sarah was obviously much distressed. I don’t know anything about colon cancer but I know she suffered tremendously from it. It was unrelenting. No more, Sarah.

Dennis Renaud died on September 30, 2020. He worked for many years at the Courtenay Return-it Centre. I got to know him a bit over the years partly because we were both French-Canadians from outside Quebec. He had Joseph in his name too. Many French-Canadians of a certain generation do. The women have Mary somewhere in their name.

The thing I noticed about Dennis was the way he worked. I’m always impressed by people who work in jobs that could be seen as extremely mundane and boring, but who seem to try to get the most out of every action they undertake as they work. It was obvious to me watching Dennis work that he was always looking for the most efficient way of moving cans and bottles along from the desk to the roller conveyers behind him. He could count bottle and cans very quickly and he never lost a beat. He was one of the most efficient workers I knew.

I didn’t know Dennis socially. He was a FB friend for some time, but he wasn’t that active on social media. In April of this year he was diagnosed with Stage 4 lung cancer. Five months later he was dead. He was two years younger than me. A good, former Catholic, sort of French Canadian kid, like me.

In a way I envy you Dennis. No lingering around with chemo treatment after chemo treatment with shit for quality of life. I think Sarah might just agree with me and in a way she might envy you too.

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Flowers.

I love begonias. Carolyn grew these in a hanging pot just outside the back door. I saw the every time I walked to the back yard, a half dozen times a day. These flowers are deadly difficult to render realistically. I need a lot more practice to do them well. I’m learning, though. In ‘nature’ there are no lines but drawing this flower requires that I draw lines. The trick is to make the lines disappear into the contours of the subject. It’s not possible with ink, at least it’s not easy. Besides I love the effect ink gives a piece and if I want to look at a begonia not translated via the synapses of my brain I just look at the photo. The begonia I draw tells me as much about my synapses and my brain as it does about the subject matter.

This is quite impressionistic. Definitely not ‘realistic.’

The begonias below, one behind the other are stunning in my mind.

I draw them using a .3 copic pen and then use watercolour on them. This time I use a wet watercolour technique. I haven’t finished this piece yet as you can see. The next one I do will be done with no ink, just watercolour directly on paper with no preparatory drawing. We’ll see how that goes.

And now just look at all the other beautiful flowers that are still blooming in the garden in early October!

If you feel so moved you might just want to ‘like’ my post!

62 Meh…and sporangia.

Not much motivated to write about my myeloma journey right now. My last post was on August 23rd. Today is Monday, September 14th. For some time I tried and succeeded in putting out a blog post almost every week but lately with the uncertainty around my treatment, I’ve lost interest. So, it’s been three weeks since my last post.

I talk to my local oncologist in a couple of days for fifteen minutes or so but he doesn’t make the major decisions around my treatment. I have a meeting scheduled for the consulting oncologist next month, but I have no expectations around that consultation. It will be the first time I talk to this guy. He’s new in town. I’ll be just another file to him.

From my last set of blood tests I know that my blood is pretty much normal. That will change. Technically, if I’m considered in remission they’ll do more blood tests every three months and reconsider my situation then. But right now, I don’t know if I’m in remission or not.

I already told you that I decided to cut my chemotherapy short about six weeks ago now because one of my chemo drugs was playing havoc with the way my muscles are supposed to respond to the neurological signals controlling them. My thigh muscles are particularly affected by bortezomib (trade name: Velcade), the offending drug, to the point where I experienced severe pain and weakness in my legs, especially in my thighs. That situation seems to be improving slowly. I’m taking some good pain meds and they are helping the situation, and I’m seeing a physiotherapist, but I think just being off chemo is making a big difference.

It’s been a roller coaster ride over the last few months. I’m tired of it. Thankfully, being off chemo is giving me some respite although I still have great fatigue and restricted mobility. I am doing better and I’m happy about that. Lately I’ve been able to draw and paint a little and use my microscope, telescope, and iPhone to put together some interested projects. I can’t do anything for more than a couple of hours at a time, but that’s infinitely better than staring at the ceiling all day long. I’m actually enjoying myself. I have a secret dream, however, that I shared with my physiotherapist. I shouldn’t tell you because if it doesn’t happen I’ll be sadly disappointed, but I’m determined to get into (and out of) our canoe next month and paddle around for an hour or so without assistance and without dropping like a heap on the ground unable to get up. That would be cool. I also want to drag the trailer to Strathcona Park next month for a couple of days of camping. My real secret though is that I want to restore our canoe. I can’t face that task right now, but maybe later this year, who knows. Over the past while I’ve accumulated most of the materials and tools needed for the job. Now I just need energy and strength in my legs.

In any case, while I wait to see what will become of me and how much time I have to live, I’ve been able to occupy my time productively within the limits of my illness. Well, it wouldn’t do to just idle away my time now, would it and just passively wait to die? No! In our world idleness is the work of the devil! Can’t have that.

Wait, I can see it now. I’m on my death bed, hours if not minutes from expiring permanently, but I think that I’ve left something unfinished. No! Can’t do that. Must…live…long…enough…to finish…this…blog…post. And I do. And I die happy.

Of course worrying about a bucket list or unfinished projects or missed communications is all moot. After we’re dead, there is nothing. Concepts like regret are irrelevant. Even if one believes in an afterlife, I can’t imagine anyone thinking that afterlife would be taken up with regrets about things left undone or unaccomplished in life. What a drag that would be.

One thing that’s given me a lot of pleasure lately, as I note above, is exploring the microscopic world with my microscopes and iPhone. And I’ve discovered that I can use my iPhone to record an image on my spotting scope. I’ve posted those images on Facebook so I won’t post them again here. However I will post here a couple of videos I did of sword fern sporangia. I posted a video here of an exploding sporangia some time ago while it was still attached to the leaf. This time I scraped the sporangia off of the fern leaf and that provoked them to open up en masse. The videos are at two levels of magnification. There’s a close-up one and one at a lower level of magnification.

The spores are quite visible after the sporangia have evicted them. They’re the little beige dots littering the area not covered by sporangia. I want a microscope powerful enough to have a closer look at spores, but what is interesting to me even at this level of magnification is that we normally associate movement with animal life and here we have a plant that is moving…with purpose.

I love that as I look at the world through a microscope it’s obvious that all living things on this planet have a lot in common. Carolyn and I watched a YouTube video (NOVA) the other night on DNA called What Darwin Didn’t Know. It really reinforced the fact that DNA is ubiquitous and that life is much more unitary that we think. We really are all in this together. It would be awesome if we could develop respect for all life, all of us that is, including Monsanto and Bayer executives, oil company boards, politicians and all of us. Of course, respect for life also means respect for death, because they are not separable. Life depends on death. We don’t respect death now. We fear it. What would respect for death look like?

PS: I hope the videos work for you. If not, please let me know. For those of you receiving email notifications of my blog posts, you may need to go to the blog site to see them rather that stay on your email to view them.

PS2: My next blog post will be completely different from what you’re accustomed to read here. It’s about a brother I would have had if he had survived childbirth.

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.

59 Perturbatious Times (and wee bugs)

So, the last three weeks since my last post have been momentous (for me) because, as I’ve noted before, I was faced with the devil’s choice of carrying on with the chemotherapy that was sapping my mobility, or of putting my chemo into abeyance. It’s been very stressful for me and for my family, especially for Carolyn.

Before I get into my decision and the reasons for it, I just want to say that I’ve had really incredible support from the oncology staff at the hospital, as well as from the palliative care staff, especially Dr. Marie-Clare Hopwood and Adele, one of the nurses at the Centre. Pain is a huge issue and a major hindrance for healing. The challenge for palliative care staff is to manage pain in the face of severe illness.

That’s where I come in. I provide the pain, they provide the relief. Ideally, at least.

Well, I’m pleased to say that in some ways, with certain aspects of my pain, I’m getting some relief with the helpful prescription writing skills that Dr. Hopwood brings to the table. It turns out (and I’ve probably already told you this) that opiates, including hydromorphone, are not much good at attenuating neuropathic pain, that is pain that originates in the nervous system. Most of my pain over the past couple of months has been dominated by neuropathic pain in my back and legs. It turns out the neural systems in my back and legs aren’t doing a great job of controlling the large muscles of my lower body. Fact is, the muscles in my legs dance constantly with fasciculations.* You may experience the odd fasciculation, but my legs are alive with them to the point where my legs have less than ideal control coming from the nerves that are supposed to make them move without us thinking about it, I lose my balance constantly, and use two canes to walk.

How often do you get a house call from a doctor?

Well, Dr. Hopwood and Adele came over to the house a few days ago for a consultation. We all sat on the deck at a proper distance apart and Adele and Dr. Hopwood wore face masks. We talked for quite some time before Dr. Hopwood arrived at a strategy to help with the pain in my back and legs. I won’t get into details, but it doesn’t involve more opiates. I’ve been on the regime that Dr. Hopwood recommended for almost a week now and it’s going well so far. I have other pain issues, but they have to be resolved in other ways. More on that later.

This past Wednesday during a regular consultation with my GP oncologist, Dr. Bakshi, I put it to him that I felt my mobility was being severely compromised and that my quality of life was being significantly eroded, especially in the last two months or so. For instance, over the past couple of months my legs have given way on me four times and I’ve found myself on the ground with no ability to get up. Thankfully, there was always somebody with me to help me get back up.

I told him I was seriously considering abandoning my current course of chemo. I was gratified to find that he was in complete sympathy with me. He said that I had successfully completed more than 80% of my suggested nine cycles of chemotherapy which would have taken me to October 6th. So, I made the decision to put my chemo into abeyance. What does that mean?

Well, it means that I’m off chemo for the foreseeable future. My last blood work shows that my blood is normal with very little paraprotein, good liver and kidney function. Now we just have to wait to see when the myeloma will again haunt my bones, veins, and arteries, because it surely will. It’s just a matter of time. Of course, I still have intense neurological pain and severe weakness in my legs. That won’t go away any time soon, if ever. We just have to wait and see.

*A fasciculation, or muscle twitch, is a spontaneous, involuntary muscle contraction and relaxation, involving fine muscle fibers. They are common, with as much as 70% of people experiencing them. They can be benign, or associated with more serious conditions. When no cause or pathology is identified, they are diagnosed as benign fasciculation syndrome. (Wikipedia)

Now for some wee bugs. I bought a 1000 power microscope on the internet that is pretty cheap but operates in conjunction with an app on my iPhone. It takes photos and videos. I find it fascinating that this little microscope can ‘see’ things I can’t see at all with my naked eye. I may use some of these photos as a basis for art work.

I caught these little guys at very high magnification on the backside of wisteria leaves. I have no idea what they are called. Any idea? I think they’re mites, but ???

58 Seventy-three Years At It, Birds, and Bees.

So, I’m sitting on the deck overlooking the fountain that Tilly has fallen in love with, and I can see the bees working the St-John’s Wort, flower after flower. I tried to capture of video of bees and flowers, but so far it just hasn’t worked. In any case, I swear I’m telling the truth (bees swarm those flowers!) so don’t press me for visual proof although I have posted a picture of the St-John’s Wort above the fountain. Spot the bee!

St-John’s Wort

Hummingbirds are into the honeysuckle to the right of this picture, making regular trips here from the feeder in the front of the house. We have huge huckleberry bushes close by which we usually save for the robins and for my brother Léo when he often comes to visit with his family in the summer. But this year who knows where the robins are and Léo is safely distancing in Maple Ridge. Someone will probably write a book: Romance in the Time of Covid or maybe, Covid-19: Mess up our world will you?

The weather is getting warmer and the reclining chairs we have on the deck are very comfy. Sleep comes easily unless I’m on one of my dex days. Two and a half more chemo cycles. Must make it through. I’m trusting that I won’t be in a wheelchair after my first chemo course is over in October, but who knows, oncologists are not known for committing themselves to a particular prognostication. Oh well. Such is life.

Winding down. Sometimes I lay awake at night, especially on those nights when I’m on a dexamethasone high. Wakeful periods at night are a new things for me. I never had trouble sleeping, not even during really stressful periods in our lives. Now, at least three nights a week I have a hard time falling asleep or staying asleep.

At these times, all kinds of thoughts come into my head. They’re not all bad thoughts. I sometimes go over plans I have for a project I’m working on or I’ll muse on the news of the day. Sometimes wakeful periods can be quite productive. I promised myself years ago that when I got old I wouldn’t be one of those people who lived in the past reliving regretful events or sad moments in my life. Oh, that happens on occasion, but then I catch myself doing it and move on. Inevitably, these days, my mind wanders into the wall of truth that is my seventy-three years of life. Seventy-three years can seem like a long time, but it’s just a flash, really.

In a previous post I wrote:

As Brian Cox, the famous British physicist put it, the universe itself lives and dies in a moment. Individual organisms come and go in an instant. The passage of time is an illusion that allows us to cope with the need to die. One human life lived over a period of eighty years is no more fleeting than the life of the universe itself. 

Cox could have said “One human life lived over a period of eighty years is just as fleeting as the life of the universe itself,” because it is SO fleeting. Lately I’ve been musing about the lives of my parents and of their parents. My parents lived fairly long lives by most standards, both into their nineties, but they’re both gone and now their lives are a complete thing. It’s possible to trace their lives from beginning to end, to focus on the things they did, the children they had, the jobs they had and the way they related to us kids and their friends and relatives. There are photos and some film that my father took with his Super 8 movie camera. Everything they were and did is packaged up and we call that their lives. The finitude of a past life is obvious. It has a beginning and an end.

In our own lives we look back on past events, camping trips, weddings, stressful situations at work, strained relationships, special bonds we create with like minded people and with community. We look forward to and anticipate events, meetings, occasions, going to bed or working on a project. Time never stops for us until we fill that space we call life. At the time of our death, our life space is complete. A life is not complete until death, no matter when death comes.

Yet we are like mushrooms.

We are products of a cultural, social, and physical mycelium that has existence over time. We are much like mushrooms that sprout from a mycelium that has existed underground for some time and will exist long after the mushrooms that it produced slowly melt away back into the soil. Like mushrooms, humans flower for a short time, then decay returning to the soil of our ancestors. We are expressions of a process. Yet, no matter how elegant and truthful this metaphorical explanation may be for our lives, it does not satisfy.

No matter how hard I try to intellectualize the problem of time, life and death, I can’t help but get choked up a bit when I think that I’m on my last legs, that my death is immanent. It’s still a bit of a shock to me to think that I have incurable cancer. No way of getting out of this one. One day soon(ish) I will die. Am I prepared for that day? Not really. I want to think that when the time comes I will courageously and stoically meet my fate, but I may just beg for more morphine. Who know? However I spend my last moments of consciousness, nothing will change the outcome.

Yes, there’s currently a lot of research being done on a cure for multiple myeloma but like AIDS, it’s cure is elusive. There are treatments for myeloma that make it more like a chronic disease than an immediately fatal one, but still, the writing is on the wall, as the saying goes. Besides, myeloma or not, my death is inevitable, as is yours because that is the way it is. Life and death dance together. Learning the final dance may be the toughest thing I ever do.

Addendum

A minute ago I mindlessly killed a mosquito. It’s an automatic reaction. A Jain would be very displeased with me. Janism is an ancient Indian religion. “Jains believe that animals, plants, humans (irrespective of different spiritual development) all have a living soul in them and all should be treated with equal respect and love.” (From the website)

Shit. Well, I guess I’m no Jain.

How mindlessly we treat most life, and how quickly life comes and goes.

56 Confessions (and the weather)

The weather has been so unpredictable lately. The meteorologists at the Weather Office must be gnawing their fingernails off. It’s been great for the garden overall except now it would be good to have more heat and sun to ripen the berries. We’re eating a lot from the garden now. Cucumbers, lettuce (so much lettuce), tomatoes, zucchini, broccoli, cauliflower, kohlrabi, and lots more. I fell kind of bad that we can’t support the farmer’s markets, but no. We can’t do that. Of course the farmer’s markets have way more than just veggies and fruit, but then there are other reasons I don’t go to places where people gather, at least not regularly and not willingly.

We sat on the porch today looking over the front of the property and off toward the village. The clouds came through at different elevations, the higher ones travelling west to east and the lower ones southeast to northwest. It was sunny at intervals. It rained a bit. It was around 20˚C most of the day. Not at all unpleasant. Tilly was her usual goofy self entertaining us with her antics on the patio. She really is a laugh a minute, that is, when she’s not biting us. Sometimes she just wanders over and sits at the top of the driveway surveying the yard below. I’d love to know what kind of puppy thoughts are going through her head.

As usual for a Thursday I took my chemo oral drugs on the early morning then went to the hospital for my Bortezomib shot at 10:30. When I went in, there was just a short wait for the lab (not that I was going there), but when I came out, there was a lineup outside going almost around the building, probably thirty people, some in wheelchairs, some with walkers waiting for clearance to even step into the hospital. Some were going to the lab (for a long wait) but others were going for imaging or to the Bone people, or wherever. You stand in line whether you have an appointment or not.

Everybody gets the standard Covid-19 song and dance: Have you travelled out of the country in the last 14 days? Have you been in proximity of someone who has tested positive for Covid-19? Do you have a fever, cough? Etcetera? I usually stack up the nos at the very beginning of the process and that usually works but not today. Today I got the full meal deal. Everybody was getting it. No wonder the lineup is so long. Of course it has to be done. I’m really not complaining. The Covid-19 protocols these days appear to be just as unpredictable as the weather. Oh well, we carry on.

Just as unpredictable as the weather is how my body is going to react to my chemo drugs. It’s been a nasty ride lately with Bortezomib creating havoc with my nervous system, making my skin on my legs and torso very sensitive to painful to the touch. Added to the pain is a weakness in my legs that is now making it very difficult to move in ways I always previously took for granted, like tying my shoes or picking something off the floor. That’s very distressing. I must confess that I’ve had moments when I have felt pretty sorry for myself. Fuck cancer!

Now I’m on a very low dose of amitriptyline, a drug that was developed for depression (at 100 mg/dose) but was also discovered to help with pain at a dose of 10mg, the dose that I’m on. It has side effects, like they all do. Pile side effects on top of side effects. What drug is doing what is anybody’s guess. The pain in my legs and back is so distracting, and along with the usual dizziness I experience all the time, I get a pretty constant brain fog. I can still put together a coherent thought, but I have some difficulty communicating those thoughts sometimes. Not always. My brain is like the weather right now. Some coherent thinking. Some stoned time. Some sleepiness. Not always in the right order. Unpredictable is what it is.

The fact that I can even write this is due to some momentary clarity induced by another of my drugs, dexamethasone. It won’t last long, so I had better hurry and get this done. I’m really wondering right now about this whole business of oncology. Like, how is it that a drug can be approved to treat a condition, in my case, cancer, yet produce side effects that are debilitating, potentially for the long term? What’s the goal here?

It’s pretty obvious after reading The Emperor of all Maladies by Siddhartha Mukherjee (2010) (a book review here), that the objective of oncology, both clinical and research is to prolong life. Many people have died because of the effects of chemotherapy. As far as drug trials go the Golden Chalice is survivability. If they get 5 months more survivability with a drug that’s considered a successful trial. Since Mukherjee wrote his book, lots of progress has been made and lots of animals have been sacrificed to the cause, but they still can’t engineer Bortezomib to do good work and to avoid beating the crap out patients just in order to keep them alive. Of course, the instinct of self-preservation is strong in most of us to the point where we are more often than not willing to sacrifice a lot just to get more life out of the deal.

My chemotherapy is really working well as far as the myeloma is concerned, but at what cost? It’s a straightforward cost/benefit analysis and I’m working on that right now. I have a strong will to live, and I’ve seen people in a lot worse shape than I’m on stick it out and squeeze the last bit of life out of their decaying bodies that they can. So far I guess my actions have betrayed my values as is the case for most of us most of the time. More on this in my next post.

55 Two sickos, a baby and a garden.

Carolyn has her hands full these days, does she ever. I’m experiencing some particularly nasty side effects of one of my chemo meds weakening my legs to the point of near collapse, and last week we found Princess, our cat, in severe distress requiring long stays at the vets and heroic efforts to save her life. On top of that, there’s the puppy we brought into our lives. She’s a wonderful addition to the family, but she’s a rambunctious puppy, demanding of attention and needing some training to stop her from biting us incessantly, ripping our clothes and our bodies. Then there’s the garden.

The Garden

Speaking of the garden. It’s unbelievable this year. We’ve been eating lettuce from the garden for weeks but now the peas are coming on strong and the broccoli, cauliflower, and kohlrabi are in the pot. Some of the raspberries are ready to pick, the tomatoes are coming on as well as the zucchini and cucumbers. We’ve never had much luck with root vegetables, but this year it looks like the potatoes, carrots and beets will produce lots of tasty treats. The garlic is a bit behind this year but should be ready to pick in a week or so.

The cedar trees are loaded with cones this year to the point where they’re dragging the branches down. My favourite flowers, the lilies, are opening everywhere on the garden and this year we have a rare pond iris bloom. Such a delightful show! The birds are active too and the squirrels are busy picking the not-yet-ripe cherries. Looking out the living room window right now I’m seeing an American goldfinch, a purple finch, a couple of woodpeckers going after the suet attached to the feeder and a congeries of species, mostly thrushes, towhees, chickadees, and finches. At the pond is where we more often see kinglets and warblers. Of course, hummingbirds dash about in their usual frenzy all over the garden. So much to eat these days for all the birds.

Me

It’s been tough lately. I’m in quite a bit of neuropathic pain from one of my chemo drugs, something I’ve already written about a couple of posts back. My legs want to give out on me and if I should ever get down on the ground, I can’t get back up on my own. It’s downright discouraging. One of the main problems with this is finding the right pain med to deal with it. Hydromorphone is ineffective against neuropathic pain although I’m always tempted to take it so that I get stoned enough to be able to sleep. But I don’t like that strategy so I’m looking to other ways of getting by. I’m cutting back on my hydromorphone and taking more acetaminophen. That seems to allow me to sleep better while avoiding some of the worse brain fog and intense fatigue that I get from the opiates.

It may be that some of the back and leg pain I’m feeling is from conditions other than those produced by myeloma or chemo. To see if there’s a mechanical issue, my local oncology GP has ordered an MRI to check things out. He also suggested I think about taking Gabapentin or Lyrica, but I’m not having anything to do with those drugs. They may help in some ways, but they can create lots of problems I don’t need. I’m talking to the palliative care people too and they may have suggestions. In the meantime we wait and hope the pain attenuates. I’m operating at a very reduced capacity at the moment. Must carry on, though. No point in quitting now.

Thank goodness I have Carolyn and the garden for solace.

Princess Pretty Paws

Princess is at least ten years old and has been very healthy since we got her two or three years ago. Last week we got the puppy and Princess disappeared. At first I thought there might be a connection, but Princess is not the kind of cat to run away. In any case, Carolyn found her upstairs a few days ago. She was obviously in distress. We think that she may have been hiding out in the crawlspace as she got sicker and sicker. So Carolyn immediately took her to the vet. Princess stayed there a few hours for observation and tests. The vet was at a loss to figure out what was wrong with her. The one real anomaly in her blood was a high bilirubin count indicating a liver problem. We thought it might be poisoning, but that wasn’t the case.

It turns out she has a serious problem with a bowel infection or something along those lines and she has inflamed organs. So what to do? Well, some people might have decided to put her down but that’s not our style. More tests and more again. She saw the vet three days last week as well as today, on Sunday. We have a great vet!

Princess has been on a feeding tube for three days now and we seem to have that under control. She’s on lots of meds that we give her at feeding time. Her fever has dropped, she’s eating (through the tube) and she’s getting more active. She’s not throwing up and she’s using the litter box. All good signs. So we carry on and see how it goes. We keep our fingers crossed. No point in giving up on her now!

Matilda (Tilly)

Matilda (Tilly)

Tilly is a Bernese Mountain Dog, Shepherd and Maremma Italian sheep dog cross. She’s nine weeks old and is a gift from our amazing daughters and their families. She has a great personality but like most puppies of that age is teething and biting is something she does indiscriminately. She plays rough. She bites whatever comes along: cardboard boxes, chewy toys, table legs, blankets, and us, of course. Carolyn’s arms are scratched up quite badly as you might expect. Mine are less so. We’ve found some puppy social classes for her and with some training she’ll be just fine. She’ll grow into a wonderful, mellow girl. For the moment though, she is a handful. There’s no turning our backs on her for a second. She’s very fond of the fountain next to the deck and lays on the rock taking a nip at the fountain from time to time. She’s figured out how to get under the deck and she goes from one end of it to the other under there. She figures that’s a real hoot. She loves her treats and is now responding readily to the sit command but she might just ignore that if she she wants to play, meaning attack and bite us. To be fair, she can be gentle too and plays by herself quite well. She’s not always bitey.

We’ll have to be very vigilant when Princess starts wandering around the house and property. We don’t want Tilly chasing her. It will be a challenge.

So there’s sorrow in the household at the moment but there’s a lot of joy and hope too. Be careful out there in the Time of Covid-19!

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.