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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Fall is upon us. I’m liking it.

It’s late September and Fall starts by the calendar in the next couple of days. It actually started about three weeks ago reckoned by dropping temperatures and increasing humidity. I quIte like this time of year. Cool temperatures and refreshing rain. I managed to get out yesterday. We went to the official opening of our new firehall and to the Foggy Mountain Fall Fair where we bought some T-shirts at the Cumberland Community Forest Society booth and some goodies (including Palestinian organic olive oil) at the World Community booth before getting some lunch from a food truck the name of which escapes me (Farmers something or other- the food was excellent). I was quite tired from a poor night’s sleep the night before, but everything turned out okay. I had a nap when we came home while Carolyn went out for coffee with a friend. Chemotherapy is keeping me alive but there is a price to pay. I get tired easily and the pain is still a big part of my life. The fact that I’m seventy-four years old may also have something to do with my lack of spark! Of course it does! I’m walking some, and I’m going to try riding my bike later this week when there is less rain in the forecast. I’m willing to pay the price. I always seem to benefit from exercise even though there is short term pain involved. I’d sure like to get off hydromorphone and gabapentin, but the withdrawal symptoms are hard to take. Tomorrow I hope to get some work done on the canoe. I may just do a blog post on that project alone. I’ve done a bit of drawing lately too but my neck pain really puts a damper on any sustained drawing practice. Sometimes I wear a neck brace and that helps.

Plant life here in the garden is both rejoicing at the rainfall, and at the same time preparing for the dormancy of Fall or the end of life. The vegetable garden is almost done. The raspberry plants are still throwing out a few stragglers but are pretty much done as are the blueberries. We picked the pears a couple of days ago and the plums a couple of days before that. We now have several jars of delicious plum jam thanks to Carolyn’s hard work. The pears aren’t quite ripe yet so we’ll wait until the end of the week to process them. That’s always a bit of a chore, but the results are worth it.

The ferns and grasses are still standing firm against the oncoming seasonal changes, but most of the flowers are giving up and bowing to the need to get some sleep. A few, like the begonias, sedums, and Black-eyed Susans

Begonia
Black-eyed Susans
Sedums

still buck the trend and proudly flaunt their colours against the overwhelming greens and browns of the fall and winter. Of course, speaking of colour, winter could also bring the white of snow, but that won’t be for some time yet. The long term forecast is for snow early in the season this year, but we’ll wait to see what happens. It’s always a crap shoot as to when the snow will come on the mountains, but the ski hill on Mount Washington generally aims to open in early December. It doesn’t always work out that way because the freezing levels are fickle in this area and it’s possible that skiing won’t happen until January. We should see the first snow on the Beaufort Range soon. Logging is about to start again close to the Village too. I’m of two (maybe three) minds about that. As a woodworker I can hardly condemn the practice of cutting timber and I know that my pension plan is invested in forestry companies, but I’m not keen on seeing logs go offshore to be processed either and I’m interested in learning more about how clearcutting and road building affect carbon sequestration and the production of atmospheric oxygen. We don’t have to worry about running out of atmospheric oxygen just yet (Google it). The processes of atmospheric change fascinate me at a scientific level. I’m particularly interested in long-term modelling of atmospheric change.

Pond Pano shot

The pond is full after the recent torrential rain. The sticklebacks will probably survive the winter as they have over the past few years (except for the year of the turtle!), but it would be good to keep Tilly out of it so as not to disturb their nests. That won’t be an issue as we enter Fall. Next summer she will be over two years old and we’re hoping she will leave the pond alone. That’s probably an empty hope. For now, Tilly loves the pond and she wades in it often then comes into the house to shake, spraying water everywhere. Yes, she is a bit of a brat.

Sculpture

I’m not sure why I’m making note of this here, but this sculpture lives up by the pond area under a big cedar tree and surrounded by ferns. I finished it with spar varnish the year I carved it (maybe three or four years ago?) and I thought about refinishing it because it’s showing signs of deterioration. However, I decided to leave it and let entropy take its course. I’m not concerned about how long it will last in the elements but it will be around long enough for me to enjoy it.

I guess that I’m attracted to the changes of seasons rather than to the seasons in their full bloom. That may be because the times that mark seasonal change are the best reminders of entropy and its importance in our lives and in life generally on this planet. I quite enjoy this time of year even though it marks the end of the warmth of summer and the beginning of the cold of fall nights and winter days. I’m not a big fan of the heat of summer or the cold of winter. I’m more a middling kind of guy.

Ta ta for now.

And the beat goes on…

Yes, it does. Sonny and Cher knew what they were singing about what seems like a lifetime ago now. I don’t know why, but the fact that Sonny died slammed up against a tree on a ski slope in Lake Tahoe the day after my birthday (January 5th) 1998 has my current attention. I guess it’s because his is a good example of a quick, unpredictable, death. Sonny had no time to sweat it. Death just happened to Sonny. No time to ruminate about it. Go Sonny go! I must confess that in some ways I envy Sonny his quick release.

Moving on, in my last post I told you that there was no longer any trace of multiple myeloma in my blood. I’m happy about that, but I must attach a disclaimer to that fact. The multiple myeloma will return. As I’ve repeated over and over, multiple myeloma is incurable although it is treatable. My oncologists have suggested to me that myeloma is a lot like type 2 diabetes in the way that it is treated by the medical profession. 

So, I can reasonably expect to make it to my eightieth birthday, although, frankly, longevity is not the holy grail here. And, of course, the six years from now until my eightieth year are not years owed to me. They are purely hypothetical time, years I might live, and years I might not. Moreover, as far as I know, after I’m dead, I won’t be able to regret anything about my life, how I lived it and for how long. “I” will not be so it’s ridiculous to speculate on what “I” might do after “I” am no longer. After I’m dead, “I” enter my immortality stage. 

I was not going to explore the whole business of mortality in this post, but I changed my mind. Bear with me. I just want to introduce here some ideas that I’ll come back to it in an upcoming post. These are not simple concepts to grasp, but, if you make the effort, it may help you understand life and death as I see them. So, here we go:

Humans are mortal, but only as long as we’re alive. To be blunt about it, it’s only when we are alive that we can die. Once we die, we are no longer mortal, we now become immortal, that is, we no longer change, and we consist only of what others remember of us. Our lives are complete. Simply put, immortal means not mortal. Well, once we’re dead, we are no longer mortal, by definition. We’ve arrived! We’ve become immortal! That doesn’t mean that we will live on forever in some form or other as defined by most of the religions that exist on this planet. No. “We” exist, after our deaths, only in the minds of others. 

My definition of immortality is clearly not the one espoused by most religions. The Abrahamic religions, for example, get around the problem of death by coming up with the idea of the soul. According to Christianity, the soul is the immortal aspect of human existence and is continuous before and after death. The body may return to the planetary store of compounds, atoms, and molecules, but the soul, well, the soul lives on in some kind of ill-defined relationship with a deity, “God” in the case of Christianity.  My definition of immortality does not acknowledge the bicameral nature of the person as consisting of body and soul. I see no evidence for the existence of a soul. Therefore, it does not ‘fit’ into any explanatory scheme I concoct. 

I could go on and on about death and dying as most of you well know, and as I promised I’ll get back to it in a subsequent post, but for now I’ll drop the philosophizing about immortality, death and dying and take up an issue that I’m currently faced with given the fact that we’ve tamed my myeloma. 

A few months ago, while I was still struggling with active myeloma, the pain in my bones was severe, and it was compounded by peripheral neuropathic pain. At that time a priority for me was pain relief. It still is to a large extent, but now, my priority is to see how far I can go in weaning myself off pain medications that were crucial for me for the time I was under the full effect of myeloma.  Now, I’m on two prescription pain medications and I take acetaminophen when I think of it. I was on three prescription pain meds until just recently, but I quit one of the medications cold turkey. Along with several annoying side effects, one of the more insidious side effects of that medication is dry mouth. My sense of taste was affected. I could barely taste some of my favourite foods and some I could not taste at all. I was anxious to try life without this med and as it turns out I’m quite confident that I’ll be fine without it. 

That leaves me with two pain meds. Gabapentin is a med I take for neuropathic pain. I’m currently cutting back on it to see how it goes. I’m not going cold turkey on Gabapentin, but I am determined to eliminate it from my pantheon of drugs. Hydromorphone is the drug that is the backbone of my pain treatment. I take it in slow-release form twice a day to deal with the daily predictable pain I get from myeloma’s excavations of my femurs as well as from sciatica and degenerative disk disease. I can also take hydromorphone in what’s called a pain breakthrough mode. That is, if the slow-release form of hydromorphone isn’t doing the job, I can take a more fast-acting form of the drug in any amount I feel is needed. I have taken breakthrough hydromorphone, but only sporadically, and as a last resort. I take as little of this drug that I feel will do the job. Taking more than a few milligrams of breakthrough hydromorphone leaves me hallucinating, not something I enjoy.  

The problem is that I’m seventy-four and at my age, the degenerative process is well under way. There’s no stopping it, and it’s not satisfied until it’s done. At my age, just about everybody has back pain and sciatica. These are conditions endemic to the species. It serves us right to have evolved from an arboreal species to one that is bipedal and an upright walker. Monkeys don’t have back problems. 

So, my challenge at the moment is to reduce my intake of pain meds to the point where I get pain relief without experiencing all the negative side effects of the various meds involved. So far so good. We’ll see how it goes.

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I’m writing this post on one of the hottest days of the year so far with tomorrow promising to be even hotter yet. Thankfully we have air conditioning, so the house is staying at a very acceptable 24.5˚C. Outside today, according to our weather station, the temperature has topped out at around 40˚C. Tomorrow, the prognosticators have promised us temperatures of 40˚C at mid-afternoon, so the beat goes on. 

I’m not complaining about the weather. The weather is what it is. It doesn’t respond to our needs, but instead requires that we respond to it if we’re not happy with it. Good luck with that. On to the next post now. Maybe I’ll take less time to get it out than it took me to get this one out. No promises. 

Check out this article Carolyn found for me. It’s a great discussion of chronic pain:

https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other

#86. ???????

I woke up this morning at seven twenty three and got out of bed at seven twenty eight. In that five minutes between seven twenty three and seven twenty eight I had a couple of thinks1. These were little thinks, nothing momentous or earth-shattering. They were thinks about what I would do today. I decided on a couple of things to work on, writing a blog post is one and the other is going down to my studio to continue a clean up I started some time ago in preparation for some work I want to do.

Today is the day after my Daratumumab infusion at the hospital. That’s a bi-monthly event for me. We get to the hospital for a nine o’clock appointment. I grab a coffee after being logged in at the Wellness Centre then make my way to the Cancer Care Centre. After getting settled in they hook me up to an IV drip and then call the pharmacy to tell them I’ve arrived and that they can prep the Dara. Yesterday it took over an hour for the pharmacy to get the Dara to the Cancer Care Centre. I waited patiently but with a little frustration, I must admit. After about ten fifteen they released the Dara starting the infusion. I read my book for a bit but soon fell asleep. I woke up at eleven forty five. Cool. The infusion was almost done. It generally takes about one and a half hours. At about twelve twenty, Carolyn picked me up and we came home.

Along with the Dara, as you well know, I take dexamethasone and lenalidomide. These are the chemo drugs. Dara is not a chemo drug, but a monoclonal antibody. Click on the word Daratumumab in the paragraph above for some good information about Dara. Dex and Lena are very different drugs that do different things in the blood. Dexamethasone is a steroid and has some annoying side effects like interfering with sleep. That it did last night. I slept in fits and starts and got maybe four hours of sleep total. I won’t get much sleep until Monday.

My life these days is organized around my chemotherapy. Of course, my Dara infusions predominate, but the dex has the most immediate and dramatic effects aside from the hydromorphone. I most often go to bed before nine o’clock in the evening. I rarely go to sleep right away, however. Yesterday, I did fall asleep after going to bed at eight thirty. I woke up about forty-five minutes later with a start. I had gone to sleep with the cat laying between my legs. I dreamt that the cat had been joined by my brother. I woke up with nobody on the bed with me. I was startled when I woke up but relieved too because I find it uncomfortable to have the cat sleep with me. I mean, I could easily get her off the bed, but I’m a sucker for the cat. She rules.

A preoccupation I have these days relates to the purpose of life and how to determine what to do with the time I have left to live. I have all kinds of time every day to think about things so off I go. Obviously there will be some physical restrictions that hamper the kinds of activities I can do; after all, I am seventy-four years old. One serious big think I’m having these days is coming to grips with the kinds of activities I am still capable of doing amongst the many I did during my younger years. I don’t want to simply lay back and avoid any activities that would require of me exertion that might tire me or leave me incapable of doing anything for a couple of days afterwards. I’m still strong enough, but I’m not as well coordinated as I used to be. I’m learning that I have to strike a balance between what I want to do and what I’m really capable of doing. There is a slew of activities I did when I was younger that are beyond me now. I have to be realistic about these things. I cranked up the chainsaw the other day and chopped a bit of wood. That was fine. I could do that. But what I want to do in terms of sculpture would require that I use saws and chisels for a sustained period of time. I don’t know if I have the sustainability to sculpt, but I know I can paint and draw. Whether I have the desire to do these things is another question.

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1 This is a verb being used as a noun, but it’s probably not original.

#79. My Numbers!

This is the post I’ve been looking forward to writing for some time now. It documents a radical improvement in my myeloma situation. Now, if only I could find a way to rapidly decrease the problems and pain I get from arthritis and degenerative disk syndrome, I would almost be back to a normal life. Of course, I keep forgetting that I’m 74 years old and that I’ll never be able to do the things now that I used to do just ten years ago. But enough grousing about my limitations, it’s time to focus on some recent victories that have everything to do with my numbers.

For me, the one thing that came along with the diagnosis of multiple myeloma or bone marrow cancer was (and is) an obsession and fascination with my numbers. I wrote about this earlier in a blog post on December 17th, 2019 (https://rogerjgalbert.com/2019/12/17/access-to-medical-records/). Now is a good time to revisit my obsession with my numbers because I’ve recently had some pretty spectacular changes in some of my critical numbers. I concur with Paul Kleutghen when he writes:”We (patients and caregivers) have all become so attuned to focusing on numbers that any excursion out of the “normal” causes worries and sleepless nights.”* I generally don’t lose sleep over anything, but, like Kleutghen, I am focussed on my numbers, and I get pretty upset if my numbers are going in the wrong direction or stand outside of the reference numbers.** Of course it’s an entirely different story when my numbers go in the right direction. Numbers are important to me and you’ll see why in this post.

My numbers refers to the lab results I get from frequent visits to the Vancouver Island Heath Authority (VIHA) lab in Courtenay, or to the hospital lab. As a regular thing I get checks of my blood, my white blood cells, red blood cells, monocytes, hemoglobin, neutrophils, eosinophils, basophils, etcetera. I also get regular tests of my kidney function by analysis of creatinine in my blood serum. (I have access to all my lab results through an online VIHA service called MyHealth.). By the way, a really good source of information about reading our lab results can be found here: http://media.myelomacentral.com/wp-content/uploads/UnderstandingYourLabResults.pdf.

Once a month or so I get tested for more myeloma specific indicators in my blood serum. These are paraproteins and free light chains, both kappa and lambda. Our blood has both Free Light Chains and Heavy Chains. These are simply descriptions of the organization of proteins in our blood serum. Without getting into too much technical detail it’s important to note that some myeloma patients are kappa free light chain myeloma patients and some are lambda free light chain myeloma patients. I’m a lambda kind of guy.

So, I went on a new chemo regimen in January. It’s composed of dexamethasone, a glucocorticoid, lenalidomide, a chemo drug (they’re not sure how it works) and Daratumumab, a monoclonal antibody. If your eyes haven’t glassed over yet from all the technical jargon I invite you to have a look at the table below I got from MyHealth. It refers to my Lambda Free Light Chains from June, 2020 to February 26th, 2021. It’s a very informative table. The red numbers highlight times when the lab results indicated that I had lambda free light chains higher than the reference range, which is conveniently given on the right in the table. You can see that from September 30th, 2020 until January 27th, 2021 that the myeloma was getting more active again in my blood, a conclusion supported by the redness of the numbers therein. Not only that, but you can see that the amount of free light chains in my blood was increasing rapidly during that time from 44.2 milligrams per litre of blood on September 30th 2020 to 201 milligrams per litre of blood on January 27, 2021, but in fact had been increasing from June 30, 2020. That was a very worrying trend because the more free light chains in my blood the sicker I get.

Then I started the new course of chemotherapy and the lambda free light chains in my blood went from 201 to 11.7 mg/l a number well within the reference range. That”s why I got so excited when I saw the ‘normal’ 11.7 mg/L on February 26th, just a few days ago. In my discussion with my oncologist in Victoria, he said that we shouldn’t expect to see any positive results for two to three months and here I went from a high of 201 to 11.7 in a month! Now, that is cause for celebration. It means that the Daratumumab is my buddy and is working better than expected. Hallelujah!

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*https://www.myelomacrowd.org/living-with-abnormal-free-light-chain-ratios/

**reference numbers are a range of numbers within which numbers should fit in a ‘normal’ person. Reference numbers are where the majority of people would fit in terms of their standing on any particular measure. It’s a range because there is understandable variation from patient to patient. For example for Kappa Free Light Chains the reference range is 3.30 – 19.40 mg/L.

I’m refractory!

That means that, regrettably, I’m no longer in remission. Myeloma is back doing its destructive thing in my bones. Well, technically, myeloma never went away and as my local oncologist often repeats myeloma is incurable but treatable. As he says, we can beat it down but we can’t beat it to death.

I really wish I had more psychic energy to put together these posts. Right now it’s very difficult partly because I have low physical energy levels but I also have to deal with the reality of being 74 years old with a cancer that won’t go away and that takes up a fair bit of brain space.

So, next week I’m back on chemotherapy. This course of therapy is very different from the first course I went through last year. The very first primary chemo drug I was on is called lenalinomide. I was on it for less than a month before I broke out in a nasty rash around my midsection. At that point my oncologist pulled the plug on it and put me on another med called Bortezomib. I was on it for 7 months or so before I ended it. I was supposed to be on it for 9 months but after 7 months I was in such pain and had such loss of mobility that I felt I had no choice but to stop the therapy. It took a few weeks for the symptoms to partially dissipate, but I felt a lot better soon enough. I always wondered though, in the back of my mind. when the myeloma was going to reactivate because I knew that it would. Now we know.

I start chemo on Feb. 3rd. I’ll be on an IV for most of the day. I’ll return the next day for a repeat performance, then once a week after that. The main med star for this course of therapy is Daratumumab. It’s a very different drug than I’ve previously been on and we’re very hopeful that it will perform well. In addition to the Dara, I’ll be getting a very low dose of lenalinomide. Although it gave me a huge rash the first time around my oncologist decided to give it another try starting at a very low dose. They’ll also closely monitor any allergic reaction I have to the lenalinomide. I’ll also get a regular dose of dexamethasone, which is a corticosteroid. It produces some strange effects, but I’m accustomed to them and I’m sure I’ll get along well with dex.

Along with my regular chemo meds I’ll be taking an assortment of other drugs to help with allergic reactions and to help prevent blood clotting.

One complication I’m now facing for the first time is the possibility that I’ll need radiation treatment on my jaw. Myeloma is a disease of the bones. I have some fairly large lesions in my femurs. They’ve been well monitored. Now, however, over the past while I’ve been getting some very strange feelings in my lower left jaw. I’m losing feeling in it and if I touch it in the wrong (right?) place, I get an electrified stabbing pain. I have a phone interview with a radiation oncologist on February 17th. I’m not sure what she can determine over the phone, but we’ll see.

One thing for certain is the fact that I’ll be spending a lot of time at the hospital over the next six months. After that things will slow down and I’ll have to go into the hospital only once a month for as long as this course of meds works.

African violet

Now, look at this African violet. She is a wonder! I never expected her to bloom as long as she has. She actually put out more petals over the past few weeks. What an inspiration she is!

#75. A Triple Whammy of Crap (and maybe a bit of good stuff too).

It’s been tough keeping my shit together over the past few weeks. I’m having trouble just sitting here composing this on my computer. Part of my problem is physical and part is a growing psychological ennui. I’m exhausted most of the time. Oh, I can get up and walk around a bit but sometimes that’s even too much.

Obviously myeloma has a lot to do with my unease even though I’m in remission, or I think I’m still in remission. I have a chat with my oncologist on the 22nd to confirm my status. It’s hard to know what to think anymore. My usual myeloma symptoms, peripheral neuropathy, itchiness, fatigue and weakness in my legs, are still evident, but now, I have something new to report to him.

I saw a dental specialist on December 21st. After I came to see him because of pain in my jaw, my regular dentist suggested I would probably need to have a tooth pulled and a cyst at the base of it cleaned out. Well, it turns out that the specialist I saw in Parksville figures that the pain and numbness in my jaw is not dentally related. It’s more likely myeloma induced and that the ‘cyst’ is more likely a lytic lesion. I’m still waiting for a call from him letting me know what the situation is. He has a connection with the BC Cancer Agency in Victoria so I expect he has better access than most of us to oncologists. I expect he’ll suggest radiation treatment, something we discussed on our December 21 consult, but my oncologist will decide on therapies.

Right now, I’m on a rollercoaster of symptoms and I can’t predict one day to the next how I’ll be or how much extra hydromorphone I’ll need to take to deal with the pain. My jaw is sucking up the hydromorphone, that’s for sure, but so is my back and a recurring, baffling pain in my left heel that forced me into a wheelchair at one point late last year. I can’t tell you how sick and tired I am of the pain. It leaves me physically and psychologically drained. Thank goodness I usually sleep quite well and Carolyn is envious of my ability to nap at a moment’s notice.

The title of this post is A Triple Whammy of Crap. Well, I’ve written about the pain and distress brought on by myeloma and its treatments. Myeloma and its related poop is the first part of my triple whammy. Now it’s time to move on to the other two elements of the triple whammy. First, a definition:

Triple Whammy

An online dictionary of idioms describes a triple whammy as “a combination of three different elements, circumstances, or actions that results in a particularly powerful force, outcome, or effect.”

I’ve already alluded to one element of my triple whammy, the myeloma and its treatments I deal with daily. The other two are the pandemic and American politics. So, myeloma, the pandemic (and associated restrictions) and American politics together contribute to generating in me a profound funk. With crap falling on us from all sides it’s hard to keep the smell of shit at bay.

The Pandemic

These days, we all have some sense of what it was like to live in 1918. The Spanish Flu was a powerful killer and didn’t discriminate except that wealthy people were better able to protect themselves from crowds than the poor could. That’s still the truth in 2021. The coronavirus COV-2 is adept at making many of us in the population very sick and puts a lot of pressure on the medical system as it forces hospitalizations.

One way the government and chief provincial medical officer in British Columbia have decided to combat COV-2 is by keeping us apart from each other so as to prevent the spread of the virus. Isolation is hardly ever good for a social species like us. There is a lot of evidence for what happens to people who are forced into isolation like solitary confinement in prison. They go wingy after a while. Children forced into isolation, say in an orphanage, die at much higher rate than children born and raised in poverty or in prison with their mothers.

So, in order to relieve the stress of isolation, people here find all kinds of ways of bending the rules, traveling to nearby destinations, or just getting on a plane to a warm destination because the government hasn’t outright banned travel, now has it? It just strongly recommends against it. Many politicians have decided to travel in any case, arguing that they haven’t broken any rules in doing so. Outraged commentators on social media have found all kinds of reasons to criticize them including their flouting of moral standards. Whatever.

I guess the bottom line here is that we are asked to wear masks and to keeping a physical distance from others whenever we step out of our homes. No hugs. For us that means no contact with our children and grandchildren. That sucks! We will follow the guidelines as we go along, but that doesn’t mean we’re happy about it.

American Politics

So, why would I include American politics as the last element in my triple whammy of crap? What the hell has American politics got to do with us? With me?

Well, apart from the fact that I have friends and relatives living in the United States and who have to live with the lies, the betrayals and the crap everyday, the profound disfunction of the American political system creates uncertainty for us, for all of us. The moral degeneracy in the US so easily spreads to the rest of us, especially those of us living close to the 49th parallel, and is impossible to avoid. The disrespect for democracy and the ready acceptance of oligarchy evident in the US could spread to us like a virus and infect our own fragile political systems.

Besides, the uncertainty is stressful as is the insanity. We get up in the morning not knowing what the hell Trump or his cronies in the Republican Divided Party are likely to conjure up and take up as a tool to wreck confidence in the American voting system or in any drive to greater social equality. I can tell you that I’ve had my critical judgments around the American voting system and the Electoral College in particular. That said, destroying the ship plank by plank as it sails off into the sunset may not be the best strategy for reform especially for everyone aboard.

Done.

Any one of the three elements of the triple whammy I outline above can cause inordinate stress (and does!) but the three of them together leaves a trail of discomfort and uncertainty multiplied threefold. We’ll carry on, but it’s not easy. Thankfully there are countervailing forces to help balance things out a bit.

A nap in the afternoon for one. An African violet blooming its little heart out in December and January for another.

I’ll be backing off writing here for a time. I’m not sure for how long. I’ve got to get a sense of balance back into my life (if I ever can). The truth is I’m 74 years old and sick with myeloma. Many days all I want to do is sleep.

Many people tell me that the power to heal is within me. I just need to harness it, to think positively, and to ignore negative influences in my life. At 74, that’s easier said than done. It’s usually younger, healthier people who urge me to get my power pack in motion. Of course, nobody messes with death, positive thinking or not.

#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.

#73. Surprises, Leo Panitch, and an African violet.

This will be a short pre-Christmas post, just to cheer you up a bit. The first part is a short comment on Leo Panitch, a Canadian scholar and academic most of you will never have heard of who died recently of Covid-19. The second part is a short update on my situation which keeps throwing up unwelcome surprises for us.

Leo Panitch (1945-2020)

Panitch was a Jewish kid from Winnipeg. I was a French Canadian kid from British Columbia (?), but we both were from working class families. Leo Panitch joined a panoply of incipient Marxist and leftist social scientists, many American, some draft-dodgers, who began to populate the halls of Canadian universities in the late 1960s, throughout the 1970s and into the 1980s. He was one of the more thoughtful and moderate among them. He was a political economist, political scientist, and sociologist who wrote tons of books and articles on Marxist science relating to global economic development. I had a great deal of respect for his work. I ran into him a couple of times at conferences but we weren’t buddies or anything like that.

He died on Saturday, December 19th, 2020 of Covid-19. Just a short time before his death, he had contracted pneumonia, and even a bit earlier than that he had been diagnosed with multiple myeloma. He must have been in a highly weakened state when he succumbed to Covid-19. I have no idea how long he had myeloma before he finally got a diagnosis but that disease has a way of smacking one down, keeping one weak and off balance. It’s a disease that is not easy to detect and its symptoms mimic the symptoms of many other conditions. I have no idea how long I had had myeloma before getting a diagnosis but that’s just about how I felt in December last year as I embarked on months of chemotherapy.

Panitch and I had some things in common. Certainly, we had multiple myeloma in common. We were both scholars but he worked mainly in universities whereas I worked in colleges. We shared an intellectual tradition of critical inquiry into the rise of global capitalism. He wrote a great deal, works that I was able to use in my teaching. I got involved in television based teaching and published very little that could be considered scholarship. I focussed on teaching as he did. His eulogies note that his work as a teacher was his most satisfying. His students certainly considered him a great teacher. He will be sorely missed.

Me and Myeloma Now

A few days ago, maybe 10, I was sitting in my chair when I noticed my lower left jaw was hurting a bit. One of my teeth seemed a bit wobbly and weak. It was nothing much. It remained like that for a few days, but as it got closer to the weekend and the pain seemed to increase slightly I figured I had better try to get in to see my dentist. I didn’t want to be chasing after a dentist this week or next week either.

So, my dentist is a great guy. He’s been the family dentist for over thirty years. We know each other very well. After I had been diagnosed with myeloma last year my oncologist said I should make sure to get checked up by my dentist, so I did. He was very upset with the diagnosis and was super attentive. I didn’t hesitate to contact him last week so that if I needed a tooth extracted that could happen before the holidays.

I contacted his office on Thursday. By Friday afternoon, he had arranged for me to get a special imaging session set up at a local dental surgeon’s office. With that, I then had a consultation with my dentist himself on Friday afternoon. Using the x-ray images he determined that I had a tooth that was dead and a cyst just below it. Both would have to come out. At the same time, though, anticipating an extraction and possible problems with the cyst, he was able to call in some favours and got me into an office of dental surgery in Parksville sometime on Monday (yesterday). We got a call from Parksville on Monday morning asking if we could be there by 11:45. Yes, of course we could…even in the snow!

We just made it for 11:45, Carolyn driving carefully in the snow and slush as we passed four or five cars in the ditch. Turns out, this doctor in Parksville is a real star and was familiar with multiple myeloma. After talking for some time and going over my symptoms, especially the numbness in my jaw, and the location of the pain, we determined that the dark spot (typical of myeloma lesions) on the x-ray we had taken the day before was in all likelihood a myeloma lesion and had nothing to do with my teeth. Well, that changes everything, doesn’t it? I wasn’t expecting that.

I was expecting to go down there and come back with one less tooth. That was not to be. Instead, this doctor arranged to contact my oncologist in Victoria so that they could together decide what to do, if anything. I get blood tests on January 5th, and I have an appointment with my oncologist on January 22nd.

At this point I have no idea what to think. I should know in a month whether the myeloma has retuned or not. If not, that would be great! If it has returned, then we decide on a new course of chemotherapy. Not something I look forward to.

Whatever! Merry Christmas, Happy Holidays or any other greeting you may like!

We have high hopes for 2021. We need this virus to get lost but we don’t want to go back to things as they were. What do you want to keep from the past and what would you like to unload?

I love this little African violet we have in the bathroom. As you can see most of the flowers have died off quite some time ago. The plant was bare for a while. Then, all of a sudden, this flower emerges and it’s still blooming its head off. I like that. It’s been recently joined by another blossom! So cool.

Merry African Christmas!

#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!