Moments in my life #3: Dealing with Pain

If you read this blog regularly you will know that I am preoccupied with pain. There are at least ten posts wherein I address pain more or less directly. This one will make it eleven. What triggered my writing this post is a Zoom class I had yesterday on Somatics designed to help us deal with chronic pain. It comes from the Central Island Pain Program at the Nanaimo General Hospital, an organization I had something to do with several years ago after I experienced a lot of pain from kidney surgery. I’ll deal with Somatics at the end of this blog post.

Pain! There are a few people who do not experience pain at all (their condition is called congenital insensitivity to pain,(CIP) or also hereditary sensory and autonomic neuropathy type IV (HSAN IV). Those individuals who can’t feel pain wish they could because if they inadvertently put their hand on a hot stove element they don’t know about it until they smell burning flesh, that’s if their sense of smell is operative which it often isn’t. (There is some very interesting research reported on a Wikipedia site about the gene that is involved in congenital insensitivity to pain.)

So pain is not always a bad thing.

In fact pain is a signal that something is not quite right in our body. For instance, the sensation (pain) I feel in my left thoracic area is a result of surgery, as I noted earlier. I had my left kidney removed because of kidney cell cancer. That was in 2002 and the sensation has not gone away although it varies in severity. These days I don’t feel it that often but that’s because I don’t stress that area of my body by doing work or sitting inappropriately. A few years ago a doctor at the Pain Clinic at the Nanaimo General Hospital ultimately suggested that I have a tens machine implanted in that part of my thoracic area to relieve pain. I respectfully declined the invitation. In the Pain Clinic’s orientation session the staff told us that the pain we were experiencing in various parts of our bodies was really in our brains, not at the site of the trauma. Apparently it’s the brain that tells us that we have pain. If the brain doesn’t get a signal from the site of trauma, we don’t experience pain. I experience pain in various parts of my body these days and it seems that the pain receptors in my brain are quite active but the pain always seems to be located at the trauma site.

Pain is not just one type of bodily phenomenon or experience. If you go to the emergency department of the local hospital or to your family physician’s clinic you may very well be asked what kind of pain you are having. I always find that a difficult question to answer. Well, are you having stabbing pain? Or is it like electric shock? Or is it throbbing pain? My answer is often “yes” because I can experience several kinds of pain simultaneously. For example, my neck pain can be quite severe at times. I experience it as stabbing pain or what I call ‘charley-horse’ pain because of the cramping that accompanies it, but there’s always an underlying throbbing pain too that varies in severity. It’s caused by degenerative disc syndrome which is very common in older people and by arthritis. Simultaneously I’m having peripheral neuropathy and my legs hurt as well as my lower back. So I have lots of pain in various parts of my body. In fact, there are dozens of types of pain, some specific, some very general.

The Johns Hopkins Blaustein Pain Treatment Center website provides a list of pain types for our reading pleasure:

“At the Johns Hopkins Blaustein Pain Treatment Center, we provide treatment for the following types of pain:

  • Low back pain
  • Spinal stenosis
  • Vertebral Compression Fractures
  • Cervical and lumbar facet joint disease
  • Sciatica/Radiculopathy (“pinched nerve”)
  • Sacroiliac joint disease
  • Failed back surgery pain (FBSS) / Post-Laminectomy Neuropathic Pain
  • Neuropathic (Nerve) pain
  • Head pain / Occipital neuralgia (Scalp/head pain)
  • Hip pain
  • Intercostal neuralgia (Rib pain)
  • Peripheral neuropathy (Diabetic nerve pain)
  • Complex regional pain syndrome (Reflex Sympathetic Dystrophy –  RSD)
  • Herniated discs and degenerative disc disease (discogenic pain)
  • Neck pain
  • Shoulder and knee arthritic pain (osteoarthritis)
  • Myofascial (Muscular) pain
  • Post surgical pain
  • Cancer pain (pancreatic, colorectal, lung, breast, bone)
  • Pain from peripheral vascular disease
  • Anginal pain (chest pains)
  • Post-herpetic neuralgia (shingles pain)
  • Nerve entrapment syndromes
  • Spastisticy related syndromes/ pain
  • Spinal Cord Injury (central pain)
  • Pelvic pain
  • Thoracic outlet syndrome”

Well, shit, I can experience any ten of these types of pain at any one given time. So, if you ask me what kind of pain I’m having, take your pick. Don’t ask me to come up with just one, unless of course, at any specific moment a particular pain experience is taking centre stage as in my appendectomy.

Is it acute or chronic? Well, yes!

Acute pain is the result of injury. Chronic pain is the result of disease. That may be a classificatory simplification, but it’s basically accurate. To me, my neck pain seems to be both. There’s definitely disease going on in there, but if I move my neck suddenly or if I try to do something like draw, paint, or work on my canoes, the resultant pain feels like pain caused by an injury. If I (or you) have chronic pain from one or more sources, that doesn’t mean I can’t also experience acute pain, and vice versa.

And what about the intensity of the pain? Well, goddamn it, that’s another tough question to answer. Doctors and other sundry medical types generally trot out the ten point scale to measure pain intensity, but there is a list of ten scales here, so it’s not simple. Pain clinics are everywhere and are very busy these days. I’m currently attending the Pain Clinic at the Nanaimo Regional Hospital (again!). Well, I’m not really attending, yet. So far all interactions with the clinic have been by Zoom. But on October 6th I’m going to Nanaimo to have a steroid injected into my neck to see if we can attenuate the pain signals to the brain. That’s a good solution because surgery is not really an option and it’s so common among old folks like me that it’s hardly worth the bother to consider. Palliative care is the goal. It’s interesting, though, that the decision to inject the steroid is a tacit recognition that pain starts at the site of trauma. I have bone pain. It’s clear that that’s caused by multiple myeloma and its propensity to cause bone lesions. The bone lesions in my femurs result in pain signals to my brain where I’m told pain is experienced. So how can this kind of pain, or any of the pain I’m experiencing, be treated? Well, let me count the ways!

Just to be clear, I mentioned palliative care in the above paragraph. As this website notes, palliative care is all about pain management. It’s not the same as hospice care or what we sometimes refer to end-of-life care. So palliative doctors (there are some in the Comox Valley) focus on pain relief mostly for chronic severe pain. They offer a number of treatments for pain relief.

Overall, there are many treatment options for severe chronic pain. Medications are commonly used for pain relief. Opioids like hydromorphone are quite often used. I take hydromorphone orally every day. Gabapentin and nortriptyline are two I’m familiar with but there are hundreds or meds used for pain relief (Google it). Surgery is often used to relieve pain as are injections of various kinds like the one I’ll be getting next month where a steroid will be injected in my neck. There is a procedure where a cement is injected into vertebrae to relieve pain and there is a procedure where a balloon is used to open up the spaces in the vertebrae blocked by compression.

The Pain Clinic at the Nanaimo General Hospital offers many options for classes designed to help one address pain by conscious activation of the autonomic nervous system with gentle ‘exercise’. Somatics is a practice used to slowly and consciously re-program the nervous system to deal with pain. I’ll give it a try. Muscle tension is a major source of pain so anything that can relieve tension is worth a try. So far, for me, medications have been the major treatment I’ve received for pain relief. They haven’t always worked that well. Hydromorphone works but to relieve pain I need to take so much that it leaves me cognitively impaired and that’s not something I’m willing to entertain. So I put up with some pain so that I can retain some cognitive and psychic sharpness.

That’s enough for today, and maybe I’ve written enough about pain. Thanks for reading my posts.

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Ho Hum.

I guess it’s not really ho hum, but my life is definitely just ticking along. The ‘injuries’ I’ve sustained via myeloma and chemotherapy have prevented me from doing a lot of physical activity, but I keep getting the medical people telling me to stay active! It’s a tightrope I walk. Well, not a real tightrope, but you know what I mean. Do exercise? Pay for it afterwards for days with pain and joints that do not want to move. Don’t do exercise? Shorten my life and make moving around increasingly difficult. This is no fun. Well, it’s true that it’s no fun. Pain is no fun. But who promised me that I would have fun all the time? Fun is for the young and healthy, or at least for the healthy (of all ages). I really don’t expect to have ‘fun’ anymore. Should I be having fun? What kind of fun should I be having? Is there more than one kind of fun I should be having? Is reading a book fun? What kind of fun can I have when my left knee keeps wanting to fold on me without warning? If I get down on the floor, I may not be able to get up again. That’s no fun…I guess, although it might be fun for somebody to watch me try to get up off the floor. Is betting fun?

I really like this time of year. It’s cool in the shade and warm in the sun. We walked on the River Walkway this afternoon. It was cool in the shade and warm in the sun. We had iced coffee. Yummy. Is having an iced coffee on a warm, sunny afternoon on the River Walkway fun? I don’t know. Maybe I was having fun. I’m not sure.

I was going to write about pain and death today, but then I decided to keep it light. Pain and death are heavy. Fun is light! Long live fun! I DO really want to have fun, to possess it, to keep it close to me and give it a big hug but I’m not sure that’s the way it works.

You might think that chemo is no fun. Well, you might be wrong. Being hooked up to an infusion machine for a couple of hours has its moments. There’s no pain involved, but being tethered to a ‘tree’ with bags of saline solution and meds flapping around presents certain challenges when the need for a pee break presents itself. Thankfully, the ‘trees’ we use have battery powered brains and can be unplugged from the wall sockets. That way we (I in particular) can wheel them around to the bathroom and pee while we hang on to them and try not to pee on the lines. It’s difficult because the lines hang down quite far, often right in front of my pant zipper. It’s fine for women because you sit down to pee but for us guys the danger is omnipresent. Of course I can sit down to pee, but my anatomy resists that. The issue is compounded because the toilet seat in the bathroom attached to the Cancer Care Centre won’t stay up. That means I either have to hold it up while I also hold up the lines and other things or pee on the seat. Yes, the damned toilet has a slot in the front/middle but I’m not that great at aiming my stream which is erratic at the best of times. I don’t have the straight-as-an-arrow powerful stream I used to have in my youth. I used to be able to control my pee stream with little effort. Now I’m just glad when I can pee at all. I’ve gotten very used to just standing in front of a urinal or a toilet for several minutes at a time just waiting for pee to happen. It always wants to come, it’s always right there…but no. It can get embarrassing if there are other people around also waiting to use the ‘facilities’. It’s especially bad in theatres when at half time break during a musical performance or a play when peeing is so important but I just stand there with ten guys in line behind me waiting. Damn! So embarrassing. But what a relief when it finally happens. Now that’s a lot of fun!

The nurses in the Chemo Centre are a lot of fun. We joke around as they try to find a vein in my arm to poke. My veins resist entry. They hide very well. It’s a challenge for the nurses to find a vein in my arm on the first try. It gets a bit messy if it goes to three tries. If it does go to three tries the first nurse generally gives up and lets another nurse have a go. Whoa. That’s a lot of pressure to perform! I freak them out by pointing to good possible spots then watch them stick the needle in. They think that’s weird. Most people look away when they get poked. One of the nurses gave me a soft ball the size of a tennis ball to squeeze all day long. That, apparently, makes the veins stand out. I think it may be working. She got it first try last time I was in.

I talk to my local oncologist next Wednesday. That will be fun. He’s a nice guy. We always have pleasant conversations. Did I say I like this time of year? Well, I do. Summer is almost over so I can get back to regular blogging. I must say, I’ve been lazy this summer and have been hooked on cat videos on YouTube. I’ve also gotten tired of writing about chemo and the life of a cancer patient. Oh, I’ll still write about those things, but I’ll also throw in lots of other bits of stuff. Stay tuned.

Happy birthday, David.

#74. Up Yours 2020!

I was thinking of writing a timely, thoughtful blog post for my last one of the year, then the pain around my jaw went a long way to discouraging that. Yes, I feel that there is something quite wrong with my jaw, a wrongness likely associated with myeloma.

I went to see my dentist a while before Christmas because I thought the pain in my jaw and the increasing numbness there was tooth related, but it turned out on closer inspection by a specialist that the lesion there is probably myeloma related. Such a ducky way of ending 2020.

Interesting! This is my seventy-fourth post on my experience with myeloma and it turns out that Monday is my seventy-fourth birthday. Coincidence? Of course. There’s no way I could engineer my life that closely.

I suppose I’m happy that I made it to my seventy-fourth birthday although with everything that’s going on these days, it’s hard for me to get too celebratory around my birthday.

Frankly, I’m much more concerned with what happens on January 5th, the day after my birthday. That’s when I get my blood tested for the presence of myeloma protein and other noxious nasties whose only goal in life is to kill me. I was found to be in remission when my blood was last tested three months ago. Now, we go at it again. We wait and see what the verdict is. I must say that this is getting somewhat irksome.

Oh well. So far this post has been about me and my problems. No sociology and no profundity. Just a little whining and sadness. I think I’ve earned it. But it does stop here.

BTW…I hope for your sakes that 2021 is at least twice as good as 2020.

#71 My Life With Multiple Myeloma

I just finished reading Deaf Sentence, a novel by David Lodge. Carolyn tells me it isn’t Lodge’s best work, but I quite enjoyed it. I really should review it sometime on Amazon. In any case, finishing a novel for me is quite something. I don’t usually read books until I go to bed, and that’s usually around 9 PM. At that point I may read a few pages, but usually I fall asleep after a few minutes with book still in hand or Kindle on but with light out. I was about half way through the book a couple of days ago after reading it for a couple of months. For some reason, I went to bed as usual but unlike most nights, there’s no way I could fall asleep. I had no hint of sleepiness. So, I started reading the book at around 9:15 and, except for pee breaks, I didn’t put the book down until 5 AM. Now that’s a marathon reading session for me. Completely unpredictable and not particularly welcome, but after I realized that there was no way I was going to sleep I relaxed and enjoyed the book. Finished it too!. Damn the clock!

In the book, when the main protagonist’s father dies at age 89, he takes it as an opportunity to muse about death in general. He quotes Wittgenstein, probably the most famous of all 20th Century philosophers who died in 1951, and who wrote: ” Death is not an event of life. You cannot experience it, you can only behold it happening to others with various degrees of pity and fear, knowing that one day it will happen to you.” Having myeloma I can assure you that death is never far from my mind.

Still, life goes on. I certainly don’t think about death all the time. Every once in a while I’ll remember that I have incurable cancer and I say to myself: “Yeah, I’m on my way out. But then I think I might not face death for another ten years. There have been many other myeloma patients who have lived over ten years. It’s not at all uncommon. I really don’t dwell on it. Dealing with pain on a daily basis takes up much more brain power than contemplating death. Thankfully, I have some dedicated palliative care docs who talk with me every week so as to constantly tweak my meds. It seems to be working better than it has been. I can usually sleep these days without taking ‘breakthrough’ hydromorphone. The gabapentin seems to be doing its job but I wouldn’t swear to that in court.

Most days I spend in my recliner although I do get up now and again for a bout of exercise. We have a semi-recumbent bike in my studio. I use that occasionally although it’s not my favourite way of getting exercise. I really enjoy walking on the River Walkway but I don’t get there that often. It may be that I’ll have to drive myself down there two or three times a week. Carolyn usually walks the dogs in the morning on the trails in Cumberland. I really can’t join her because of the distances she walks, the pain in my legs, and the uneven walking surfaces. I’m not complaining, just thinking out loud trying to figure out a way of getting a little more exercise without too much danger to myself or others. I drove the truck the other day without too much trouble so I think I can do it more regularly. Carolyn is doing an important job walking the mutts, so she needs to be free to do that. It’s true that I don’t need as much looking after than I did a few weeks ago. I still have moments of excruciating pain, but Carolyn can’t do anything about that. She is already very attentive and an excellent caregiver. I am so fortunate.

A few days ago, feeling chipper, I went out into the yard to do a few chores, like chop firewood. Yes, we still burn wood. In fact, we just got a new wood stove that is rated at 1.8 gr/hr. It’s a Pacific Energy wood stove made in Duncan, same brand as we had before, but with many upgrades from our old stove. You won’t see smoke coming out of our chimney 98% of the time, only for a few minutes when we first get it going in the morning. We burn only dry wood, down at least 14 months. We check the humidity of our firewood with a humidity gauge. I expect we’re among the most responsible wood stove users in the Valley. I’m sure people will still object to us burning firewood. So be it.

My recliner is close to the stove. I like it. Keeps me warm inside and out.

Tilly is getting so big. Seven months old, well over 70 pounds now. Not only that but she’s losing her puppy ways and is becoming a really sweet dog. Carolyn has posted recent pictures of her on Facebook. She’s big buddies with Cooper, the neighbour’s dog. He’s ‘intact’ and was getting very interested in Tilly’s butt so we thought it wise to have her spayed. She got through that very well. Now, she and Cooper fly around the yard wrestling and playing tug-o-war with a toy or a stick. They’ve destroyed so much of the garden with their antics but Carolyn just shrugs knowing that things will recover and will thrive come spring. We can only hope the dogs get more relaxed as time goes on and are less apt to run around the property like gilly-galoos. We expect they will get mellower and mellower as they age. That’s generally the way it works with dogs. Tilly always gets treats from me first thing in the morning. She might even get some later in the day if she’s a good dog, and she is most often a good dog. She gives us lots of kisses.

Tilly

#70 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?

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.

61 Apprehensive,Wistful, and Tansy* bugs.

A couple of issues have been dogging me lately and are crying to be released into the blogosphere. One is the fact that I am no longer on chemo and what that means, particularly with regard to my future treatments and my relationship with ‘my’ medical team. The other is a nagging, recurring introspection around my death and dying. Let me start with my limbo between chemo and remission.

Apprehensiveness

So, I’m not on chemo, at least not for now. Since October of last year I’ve been carefully supervised by a local GP oncologist and the Cancer Care Centre at the North Island Hospital in the Comox Valley. What happens now that I’m not on a regular regime of chemotherapy? I really don’t know, yet.

I called the Cancer Care Centre last week and they told me to contact my oncologist at the BC Cancer Agency (BCCA) in Victoria. Well, I contacted the BCCA to find out that the oncologist I thought I had is no longer employed at the BCCA and hasn’t been for two months or so. (Gee, thanks for letting me know.) It turns out I’ve been assigned a ‘new’ oncologist, one who has recently come here from Alberta. I have not met him but I’m scheduled to go to Victoria for an appointment with him in late October. His assistant told me to contact my local GP oncologist in the meantime. I get the sense that I’m getting a bit of a run around. I don’t think anyone is out to deliberately mess with me, but I’m feeling a little apprehensive about what happens now. It looks like I’ll have to be the squeaky wheel to get any answers. Let the squeaking begin.

I’ve noted this before, but one thing I am very grateful for is a great palliative care team. I can now report that my pain levels are going down steadily. That said, the weakness in my legs has not abated and that’s my main worry. That means that the neurological damage is not being affected by the meds I’m taking for pain. The pain is attenuating but the weakness is not. I’m still walking with two canes. I DO expect my strength to improve. Patience is the name of the game right now but I’m not that good at being patient.

Wistfulness

Yes, I am a bit wistful, longing for a more settled, less precarious, state of life. Of course, life is never settled but that doesn’t mean I can’t wish for it. Life means movement and change but we are not alway happy with that state of affairs. We resist change by getting into routines and habits. We can delude ourselves into believing that life is stable when we do the same things day after day, week after week. The fact is, life is only finally settled when it reaches its destination.

In France in 2007, Carolyn and I boarded a fast train (TGV) from Paris to Montpellier in the south not far from the Spanish border. Arianne and Tim were living in Montpellier at the time doing post-graduate work at the university there. The train was incredibly fast (TGV is Très Grande Vitesse), moving at an average speed of over 300 kilometres per hour. Yet it was the smoothest train ride I had ever experienced (and I had experienced many in my youth). There was no clickety-clack, that most familiar sound I had heard on every train trip I had ever taken in Canada between New Westminster and Edmonton (where I attended boarding school). Lengths of track in France are welded together making for a single track running for hundreds of kilometres. No seams, no clickety-clack. Frankly, I found it a bit surreal but amazing at the same time. I had filmed part of the trip just as I had filmed other events on our six week visit to France that year, but I had a hard drive crash later and all my recordings from our 2007 trip were lost. What I have not lost, however, are my memories of that trip and our whole time in France that year. I still have vivid memories of catching the train in Paris, almost missing it, boarding without the requisite documents, settling down in first class (we decided to treat ourselves), and relishing this unique experience.

In bed a few nights ago after turning off the light by my bed my mind wandered again as it often has in the last few months to my death and dying. I had been looking for a metaphor I could use to make sense of my death, to give me some relief from the constant reminders of my demise. The reality is that I’m on borrowed time with the inevitable outcome of my death looming. My brain wants to keep coming back to that. It’s determined that I will be relentlessly reminded of my death and it will make sure that that reminder holds pride of place in my frontal cortex, not content with having it stay in the back of my mind where denial is so easy. We live by metaphors so I figured it should not be too difficult to come up with a good one. But I’m not sure a metaphor can win a contest with my brain when it comes to the ominous death watch I’m experiencing.

Then, our French TGV trip came to mind. The more I considered it, the more it made sense to me as a metaphor for life. That conviction was further reinforced as I read the article I link to below on our fear of death. The message in that article is simple: life is finite so make the best of it.

How to not fear your death by Sam Dresser

Using a somewhat questionable syllogism in this article Dresser asks us to consider whether or not we are afraid of the time before we were born, when we didn’t exist. If we aren’t afraid of that time, then why should we be afraid of death which is simply a time of non-existence much like our time pre-birth?

Yes, I suppose so, but it’s not that simple. Before being born, in that time of nothingness, there is no accumulation of life’s memories, of hugs, orgasms, loves, hates, good meals, accomplishments, and regrets. There is no possibility of loss or even the conception of loss. The anticipation of death, by contrast, involves facing the loss of everything, including experiences and all things material and immaterial.

Of course there is no perfect metaphor, but thinking of our TGV trip as a metaphor for life (actually any trip will do), it’s obvious that before boarding the train there was anticipation but no knowledge of the imminent experience. Once on board, there is full knowledge that eventually the trip will come to an end but the passing scenery, the food, the weird passengers on the other side of the aisle, all consume our attention. Eventually, of course, time is up, the train pulls into the station and we are compelled to disembark. We may not want to leave the train, having enjoyed the trip so much, but that’s not an option. We must leave the train and its memories behind. Yes, coming into the station and dying are comparable I suppose. Both are inevitable, both are necessary.

Yeah, maybe that works, but I have to think about it some more.

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Tansy!

You might have seen tansies at one time or another. They aren’t super common but can often be found on vacant lots. In fact, the tansies in images 1 through 3 were photographed in an otherwise empty lot in our neighbourhood (by Carolyn). I sequenced the photos below to go from a wide to a tight view. The 4th image is one I took with the WiFi microscope at full magnification. Every one of the tansy flower heads is made up of over a hundred of the compacted cone/shafts you see in the 4th image. So, in image 1 you look over a minor sea of flowers. In image 4 you get close and personal.

What you don’t see in any of these images is what you see in the video that completes this gallery of images, namely the army of insects that populate tansy flower heads. You may be seeing only flowers when you look at images 1 through 3, but you’re also looking at bugs, lots of bugs, bugs invisible to the naked eye. The number of microscopic bugs out there is staggering. I won’t speculate on how many of them you had for dinner or are living in your eyebrows. That may be something you’d rather not be reminded of. Sorry.

I find it fascinating that we miss so much when we see the world with our limited eyesight. Truth is we see a narrow slice of the world, and that, unfortunately I think, also limits our appreciation of vast unseen, yet important to us, aspects of the world.

Tansy flower at full magnification with thrip (we think). Click twice on this image to activate it.

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*a plant of the daisy family with yellow flat-topped button-like flower heads and aromatic leaves, formerly used in cooking and medicine.