Dexamethasone for the Win!

Last post I more or less said that I would not write about pain anymore. Well, that’s not really practical if I want to write about my life so that idea is out the window. Lately pain has been my life. It’s dominated everything that I do and don’t do (because of it). So, away we go.

Along with the general pain in my legs and back from the chemo treatments I get, I have serious neck issues that are fairly common in older people, that is, vertebrae that collapse or the passages in the spine shrink (stenosis). For all of you young’uns out there, this is your future. However, most people don’t have pain to accompany these age-related changes. I just happen to be one of the lucky ones to get excruciating pain in my neck that includes cramps and a low-grade throbbing pain. Most of this I can handle. The cramps require immediate attention much like a charley-horse in the leg muscles. I often wear a neck brace to keep my neck from moving too much and inducing the cramps. In fact, I’ve just put one on because looking down on my keyboard is a sure way of bringing on a cramp.

I’ve been exasperated with my neck pain because it severely limits my mobility and I want to do some painting, drawing, and boat work. As soon as I look down for any length of time, I get a cramp and that really cramps my style, if you know what I mean. So, I called my GP. He, I’m sure being sick and tired of me complaining about pain referred me to the Pain Clinic at the hospital in Nanaimo. They called me from the clinic surprisingly quickly and we set up a telephone appointment with Dr. Pariser, one of the doctors who works at the clinic. We decided on a procedure. It would take place on October 6th, yesterday. All that was left was the waiting.

Carolyn drove me down to Nanaimo yesterday morning when I got to see Dr. Pariser. We decided on a treatment that’s been around for a long time and that works fifty percent of the time and only after a month following the procedure. It (the procedure) involves injecting a steroid in the spinal cord to deaden the pain. It’s clinically referred to as an epidural. Epidurals are sometimes given to women during labour but they are not uncommon for lower back pain.

In my case the steroid was dexamethasone. I’ve often mentioned dexamethasone (dex) in my previous posts because it’s a staple medication of my chemotherapy and it has interesting side effects. I was a bit surprised when Dr. Pariser told me that he would be injecting dex into my neck, but he assured me that there would be no adverse effects from adding this dosage of dex into my mix along with my monthly oral 12 milligrams taken in conjunction with my infusion of Daratumumab at the hospital. Frankly, I didn’t know what to expect in terms of side effects from the dex injection in my neck. It didn’t take long to find out.

Before I tell you about the effects of the dex injection in my neck I want to tell you about another source of pain I’ve had recently that prompted a visit to my dentist. It started innocently enough with a bit of sensitivity in an upper left molar. It has a large crown which has been there for some twenty-five years. X-rays showed a probable need for a root canal. Well, that was fine and dandy, but when could that be scheduled. I was in pain NOW. My dentist was very concerned and referred me to a group of dental specialists in the Valley that specializes in this kind of work. Great. Their office called me and cheerfully informed me that I was booked for an appointment on November 15th. Yahoo! That’s all I needed: a six week wait for a consultation, never mind the procedure. After whining for a bit I got the appointment moved up to October 15th. That was some improvement but still a long way off given the level of pain I was in. I mean, this pain trumped all other pain in my body. It was excruciating, it was relentless.

So, yesterday when we drove to Nanaimo I was still in a lot of pain, but it had attenuated some due to an onslaught of hydromorphone. I take hydromorphone daily in a small dose for pain associated with my multiple myeloma, its side effects and the side effects from the chemo. I take a slow-release dosage morning and night, but I also have a stock of what’s called breakthrough medication for times when the slow-release dosage just doesn’t cut it anymore. Over the last while I used a lot of breakthrough hydromorphone. It has a lot of side effects that I don’t particularly enjoy, like insomnia, but too bad about that. I needed pain relief and damn the torpedos! It’s a good thing I had my breakthrough hydromorphone.

This is where serendipity comes in. I love serendipity. Dex can relieve pain. I had pain in my mouth as well as my neck so what would dex do for my molar pain? Well, I’m pleased to report that the dex pretty much killed the pain in my mouth, at least for now. I don’t expect the pain relief to last a long time, but any relief is welcome. I have the hiccups, a common dex side effect so I know it’s working. Strangely enough, I slept very well last night. Insomnia is also a common side effect, but it’s also a side effect of other meds I’m taking so who knows what’s going on in my body.

As a bit of a side note, if there are scientists reading this, scientists interested in pain and its management, you might want to think about a way of letting others know how much pain we’re in. That wouldn’t have any pain relief effects, but it may increase positively the way most people react to people with chronic pain. I mean, it’s hard to know if someone is in pain or not. People can fake it. There are clues in bodily function and blood work, but not many that show physically. Arthritis can sometimes show clearly in the body. In the last decade of his life, my father’s hands became deformed with arthritis. He was unable to open them, and he kept them clutched against his chest. Maybe, if our pain wasn’t obvious, if our limbs glowed blue or green that would be a clear indication of pain. Whatever. Work on it.

So, in summary, dex was a clear winner for me yesterday and today. I still had a shake (liquid diet) for breakfast today like yesterday rather than my usual granola or toast, but I’ll carry on with that because I really like the shakes Carolyn makes! Besides, I expect my toothache to reappear as the dex wears off. So be it. Pain management is very complex because the pain never stays the same in terms of source or intensity. It’s like playing whack-a-mole, but with no fun involved.

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.

Moments in my life #2: Withdrawing from opioids

It’s now 5:11 AM on Friday, August 27th, 2021. I just came downstairs to my recliner/writing station. I’ve been awake since 2 AM in a dexamethasone induced insomnia and decided that it was unproductive to just lie there thinking about nothing in particular (or a multiplication of musings about my life and career) when I could be downstairs at my computer where I could retain in writing some of the musings that had come to mind as I was lying in bed with my hands behind my head in a position not particularly inducive to bringing on sleep. So, if I had no possibility in my Dex determined insomnia to fall asleep, I might as well come downstairs. Princess Pretty Paws seemed to have no objection so here I am. She does expect that if I come downstairs, I will give her some “kitty crack”, marketed as cat treats or whatever. She’s addicted to her treats and will not be denied so I obliged and before sitting down I laid out a few bits of her favourite crack to munch on. She was appreciative if I can deduce that from her silence and aloofness. She’s now sitting in the kitchen awaiting another few bits of crack, but they’re not coming. She isn’t complaining so I won’t pay any more attention to her. If she meows a lot I may get up and indulge her. Oh wait, she’s just come over and is threatening to march all over my keyboard, so I’d better get up and give her a few treats. So, that’s that. Now I can get to the topic at hand, that is, withdrawing from opioids.

Some readers of this post might consider this offering as a confession of failure. It may be viewed that way, I guess, but it’s more, in my mind, a reflection on the vagaries of life and responses to unintended outcomes and life-threatening events. I was first diagnosed with multiple myeloma (bone marrow cancer) in the fall of 2019. It was clear to Carolyn and me that I had been suffering from the effects of myeloma for many years and the resulting MRIs and CT scans confirmed that: for one thing, my femurs were being excavated by myeloma and my left femur had a ‘lytic lesion’ of 10 centimeters in length at the distal end closest to my knee and that the whole-body chronic pain I was dealing with which was clearly an effect of myeloma. That explained why I was in such constant pain all the time and increasingly unable to engage in the kinds of wonderful activities I had anticipated being able to engage in after my retirement in 2012. Of course, age plays a huge part in a body’s preparation for death, its entropy. We inevitably get weaker and have age-related physical symptoms that preclude strenuous activity. I don’t think that evolution had in mind (so to speak) that we would live so long. So now most of us over seventy have back and neck problems that tell us it’s time to slow down and forego the strenuous activities that were the hallmarks of earlier life. 

When I was finally diagnosed with myeloma, I was prescribed pain medications on top of the chemo meds I would be taking for the foreseeable future to deal specifically with my cancer. One of those meds was hydromorphone, a synthetic opioid much stronger than morphine. After some time, I was also prescribed other meds to deal with the neuropathic pain I was suffering brought on by myeloma. I was offered and take gabapentin. I was offered, took nortriptyline, then stopped taking it a few months back because I couldn’t stand the side effects it produced: unable to taste my food, enjoy eating, and I had dry mouth all the time. Enough of that. 

So, I’ve been taking a low dose of hydromorphone in two forms since late 2019. One form is a slow release 3 milligram tablet taken in the morning and 6 milligrams in the evening. It’s designed to produce ongoing relief from pain. I was also prescribed 2 milligram tablets of hydromorphone as a ‘breakthrough’ med if the pain got out of hand. I did take the breakthrough hydromorphone occasionally especially after I had indulged in some activity more strenuous than was good for me. It always worked if I took enough of it. The most I ever took was 18 milligrams, and that was only a couple of times. Taking the hydromorphone in that form eliminated some of the more egregious types of pain I endured, mostly in my thoracic area, lower back, neck, and legs, well in my whole body is what I’m saying.

Lately I’ve been feeling that I might be able to forgo some of my pain meds because I’ve been feeling pretty good. My neck pain is still nasty and prevents me from painting and drawing. Sculpting, especially with a chainsaw, is out of the question. I tried backing off gabapentin and soon realized that that was a mistake. My neuropathic pain returned with a vengeance. I’m now taking a bit more Gaba than I had been. The reality is that every med I take has side effects. None are purely capable of producing pain relief without negative consequences. Dexamethasone, for example, one of my chemo meds, is a powerful pain killer, but has huge negative consequences over time resulting in severe bone deterioration. It’s a glucocorticoid (Google it). It is not to be taken lightly although in my desperate state over the pain in my neck, I will go to the Pain Clinic at the Nanaimo Hospital in October and have some Dex injected into my neck. According to the doctor there, it may help, it may not. What have I got to lose at my age by giving it a try?

Anyway, getting back to hydromorphone. Of course, I knew that taking an opioid was fraught with issues, not the least of which is addiction. However, faced with severe chronic pain in most parts of my body, hydromorphone produced some relief and allowed me to resume some of my former activities. I can still write. Problem is that there is a balancing act when taking opioids for pain relief. Take too much and you become brain-addled and incapable of much in the way of coherent thought. Take too little and the pain relief objective is undermined.

In the face of the negative consequences of taking a powerful opioid like hydromorphone, I decided recently that I would try to withdraw from it. I knew that I shouldn’t try going cold turkey, so I decided to do the right thing and go cold turkey. Go figure! I stopped taking it last Sunday. I figured that since I was on such a low dose, how could I possibly be addicted? Well, I am addicted and the proof of that was how my body reacted to the withdrawal. I’ve never experienced in my life the effects of withdrawal. I didn’t experience some of the more horrific effects like vomiting and diarrhea, but after a while I just couldn’t stand the overall drastic body dysphoria that was the outcome of withdrawal. There’s no way I could sleep. I was agitated to the point of distraction. I could not relax or stay still. I paced. I sat down. I paced again. It was awful.

Consequently, Carolyn and I decided that I should probably resume taking hydromorphone in the usual way until my appointment at the pain clinic to see what my cortisone injections might produce in the way of pain relief. At that time, I will consult with my family doctor to develop a proper plan for withdrawal. I am prepared, though, for the possibility that I will not be able to live without some chemistry enabling a life with a modicum of relief from the grinding chronic pain that is my constant daily companion. My pain meds, so far, have proven effective. It may be that I’m suffering from some sort of moral panic. I’ve done some self-psychotherapy and have concluded that there is a distinct possibility that I may be in a moral existential crisis. How could a big, strong guy like me need opioids? The answer to that question is still blowing in my mind’s wind and may be the subject of another blog post. 

 

Up, up in the air.

What do I want to do with this blog? The thought crossed my mind that just giving up on it would not be the worst-case scenario. I’ve been at it for a few years now so it wouldn’t be outrageous for me to either quit entirely or maybe just take a break over the summer. Mygawd, I’m not making any money writing it. Lots of bloggers make money on YouTube with their blogs. I don’t, so what’s the point? Maybe I could monetize my blog, attach it to a video log and turn it loose on YouTube. After all, we DO live in a capitalist society. Might work. Probably not. 

The weather has been wonderful lately if you want to lay about on a deck. I sit on the deck close to the rock/fountain and watch the birds come down for a drink. The one in the video here is a female goldfinch we think. She flits around avoiding direct contact with the fountain. It would probably knock her over if she did. 

The wisteria gives them some shelter and protection before they come down to the fountain, but they’re still wary. Smart birds. There are cats prowlin’ around here. Our princess is one of them and she’s a hunter sometimes, mostly mice, but we don’t want to tempt her with birds. She’s being such a brat lately. She seems to have figured out exactly when I’m just about to fall asleep, then she pounces on the bed, meowling like crazy and poking my face with her paw. 

Tilly has been hanging around the pond a lot lately. She patrols the perimeter sniffing around trying to get frogs to abandon their rocks along the shore. I don’t like the way she’s been fixated on frogs lately. She come close but she hasn’t caught any yet. I’d be very pissed off if she did. She spends most of her time under the deck these days where it’s cool. She’s got such a thick black coat she must really suffer in this heat, but she never complains.

Got a call from my Oncology GP this morning. He noted that my bloodwork is coming back from the lab within reference ranges (normal). Tomorrow I go to the hospital for another infusion of Daratumumab. After that, I don’t get another one until the end of August. As of this month, I’m down to once a month for the Dara. I keep taking my regular chemo meds, lenalidomide and dexamethasone, three weeks on, one week off. So, I’m in a weird space where I have no myeloma detectable in my blood, but I’ll be on chemo for the foreseeable future, that is, until the drugs don’t work anymore. At that point they’ll put me on another regime. That means that I must be vigilant around the side-effects of the chemo. It’s not always easy to tell chemo med side-effects from pain med side-effects. 

For an old man, I’m feeling pretty good these days for about fifty percent of the time. I’m sleeping moderately well most of the time, but I have wakeful nights periodically. My neck is what’s tormenting me the most these days. According to my Oncology GP I have OAD (Old Age Disease). I can’t turn my neck more than 3% left or right. Maybe 4%. Makes it hard to do shoulder checks when I’m driving. Of course, I still drive. What are you thinking? I just have to turn my whole body when I do a shoulder check. That’s fine.

Technically, I have degenerative disc syndrome and it’s common among older people. I’m getting a CT scan early next month to confirm the diagnosis. Once I get the scan, I can ask my GP for a referral to someone who might be able to do something for me. That would be good. If I do get some relief, I’ll be able to do more writing, and maybe some sculpting. I’d love to do a bit of printmaking too. Or maybe I could just lie on the couch more comfortably. That would be good.

The improbable may just be possible.

[This is a short blog post because I want to share the information contained therein. Other posts, much less optimistic, will follow.]

The IMF, not the International Monetary Fund, but the International Myeloma Foundation has for many years invested money in research into the prevention and cure of multiple myeloma. Every oncologist we’ve ever spoken with has assured us that multiple myeloma is incurable but treatable. Now, there is open talk about getting to a cure for myeloma. 

The video and documents below explain the incredible advances towards the prevention and cure of myeloma. Obviously, I have a personal interest in this research. The cutting-edge medications I am receiving are giving me a chance for long-term remission of my disease, but even greater advances are being made and it’s all very exciting especially for younger patients who, if in their 40s, face decades of chemotherapy, stem cell transplants, and monoclonal antibodies. One of my sisters has a grandson with multiple myeloma and he is in his forties. Any advances in the treatment of myeloma and prospects for a cure are exciting to hear about, particularly for patients of his age. Please take the 3 minutes to view the YouTube video I attach below on the Icelandic research push. If that interests you, there is more information from Dr. Brian Durie’s blog a link to which follow the link to the video explaining exciting research being conducted and coordinated on the prevention and cure of myeloma under the Black Swan research umbrella. 

The IMF’s iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) publishes its first paper. https://www.youtube.com/watch?v=LskOC39mYx8

https://www.myeloma.org/blog/black-swan-research-projects-forge-ahead-2020

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

# 87. The Last Post in a Series.

Last Friday morning, we (Carolyn and I) had a meeting with my oncology consultant, Dr. Nicol Macpherson, at the BC Cancer Agency in Victoria. We meet with the oncologist in Victoria maybe three times a year. The rest of the time we have a local GP who specializes in cancer treatment. Our local GP oncologist is Dr. Bakshi. We’re quite happy with the service we get from the BCCA and from the local staff of nurses and Dr. Bakshi at the Cancer Care Centre at the Comox Valley Hospital. The meeting with Dr. Macpherson this morning was especially eventful. 

I knew that I was doing well with the chemotherapy and monoclonal antibody treatments I am getting. I started my current regime in mid-February of this year and the progress I made in a month was nothing short of stunning. We keep an eye on my frequent lab tests by logging into an Island Health website called MyHealth. On that site I get to see all the results of my lab tests, imaging results, and upcoming appointments. Obviously, we need to know what we’re looking at when we check out my blood serum profile including my paraprotein and Kappa Free Light Chain numbers which are of particular interest in my case. After some research and consultation, we now have a grip on what the lab results mean for my myeloma activity although the information is always incomplete and must be interpreted fully by someone who has better access than we do to the numbers. That someone is Dr. Macpherson in Victoria although Dr. Bakshi must also have access to my numbers, and my GP is probably copied on all the documentation coming from the hospital here and from Victoria. Now for the fun part:

So, Macpherson told us this past Friday morning that there is no trace of myeloma protein in my blood at the moment. No trace at all. He expects that that will be the case for the foreseeable future, years probably. 

We have been hoping for this result, but we had a bit of a setback late last year and early this year so we were doubtful that the zero myeloma protein in my blood would be an ongoing condition. It now appears that it is. The next few weeks will give us a definitive answer, but the situation looks very good. I have to keep reminding myself that myeloma is incurable but treatable. At the moment I’m in full remission. Inevitably the myeloma will make a comeback. We don’t know when, and that’s the frustrating part of this narrative. Still, we are in a good place right now and probably for some time to come. 

The situation with my cancer being resolved for the time being, I’ve had to rethink the focus of this blog. I have published well over four hundred posts but only eighty-seven addressing explicitly my experience with myeloma. Given the current situation I’ve decided to close the series of posts dedicated to myeloma and open up the blog for other topics and commentaries on current affairs, life and death. I started this blog in 2012, the year I retired. That’s quite some time. Maybe I’ll aim for a thousand posts. There’s no purpose in doing so but I can set up an arbitrary goal if I want. Whatever. 

Sometimes I’m tempted to shut the thing down completely but then I get the itch to write a commentary about current affairs, to get something off my chest, or just to post pictures of the beauty that surrounds me on our property here in Cumberland. We’re approaching the summer solstice. This time of year often brings unsettled weather and exponential growth in the garden which actually needs more heat and sun to ripen fruit and get the lilies to bloom. The lilies are coming up now, slowly, but soon they will colour the garden with splashes of red, yellow, orange, and white. The rhododendrons are still in bloom, at least some of them, but the dogwood and the wisteria have pretty much shed their blossoms and are moving on to create more branch and leaf structure. The weather prognosticators are suggesting that a warm, sunny trend is on the menu for next week. If that happens, we will again be able to sit out by the pond or on the deck next to the water feature there, drink tea and read. We will eat out on the deck again in warm comfort. 

Life is the weirdest thing, and I don’t mean just as it applies to humans. It seems a little perverse to me, actually. The whole thing does. The birth, growth, maturation, and then decay seem to be a waste of experience and a slap in the face to beauty which it prepares to annihilate in a short time in the last quarter of life. It celebrates renewal but only on the destruction of what went before. The death of one generation means life for the next one. For us humans the process of life is particularly insulting in that it promotes the growth and accumulation of knowledge, of piles of household goods, and property in general just as it prepares to shut it all down and make fodder out of it. Of what use is that? None that I can surmise. But, in any case, let’s not glorify usefulness. 

The concepts of use and purpose don’t apply to life or they apply completely to it. Death is necessary as a base for life. No death, no life. So, ultimately the purpose of death is to act as a basis for life. Life, in the spring, likes nothing more than a pile of shit or manure to drive new growth along. That may be true, but it doesn’t mean I have to like it. My death is not far off. According to the statistics, I have maybe five more years before I reach the average length of life in Canada for males. Given the success we’re having with chemotherapy and monoclonal antibodies I could just reach the average lifespan. Eventually, myeloma may well kill me, but whatever, something has to do the deed. I need to die, we all do, to make room for future life. Bring it on.

A picture containing tree, plant, flower, arranged

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A nice picture of white, red, and orange lilies to end with.

#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.

#84. One Day at a Time

Spring is a magical time for me. I never tire of looking out the windows at the many flowers, ferns, plants and trees as they come out in response to the warmth in the soil and other encouraging signs of Spring. On most days, the sun is there to warm my face. When it rains, the droplets glisten on the leaves as the hummingbirds dart back and forth between the feeder and their favourite perch. The wisteria is blossoming and will soon be in full flower, providing a shade canopy for the deck in anticipation of those lazy, hazy days of summer.

Wisteria

Occasionally I will take a slow stroll through the gardens aided by my cane and revel in the glorious, delicious scents that emanate from the many flowers that are now in full bloom. Right now the crab-apple tree with its ten or twelve foot canopy is showing off its clusters of blossoms and establishing its perfumed dominance as it spreads out next to the driveway. In the vegetable garden, without the benefit of a sweet scent, the rhubarb has already provided us with a delicious desert and promises more. The garlic is as hardy as ever this year and will supply us with all that we could possibly want for the coming year.

I seem to be feeling better as time goes by. Springtime has that effect on me. Of course, I’m 74 and I have the emperor of all maladies as well as various and sundry ailments related to my vertebrae competing to see which of them can make my life most miserable. All of them can and do contribute to the waves of pain that frequently sweep over me, and that inspire me to reach for the opiates and the acetaminophen. That said, I expect improvement in my situation in the coming weeks as I move into a new phase of chemotherapy having Daratumumab infusions once a month but staying the course with lenalidomide and dexamethasone. Of course, because of the nature of myeloma I can only think in the short term, five years tops. I have another handicap that makes my situation somewhat different than others and that’s the fact that I have only one kidney. I lost my left kidney to kidney cell cancer in 2002. The pain in my left side due to the nephrectomy (kidney removal) has not let me forget it either. My left side is a constant source of pain.

I should say that cancer has not been my only tormentor. In my youth I lost a lumbar disk to a sawmill accident leaving my lower back especially vulnerable to re-injury. Given all the physical ailments and challenges I’ve faced over my lifetime, I’ve managed to stay physically active running and cycling as well as working in my shop and studio. Now, the limitations I face are those of old age and cancer. I just have to be super vigilant and not do stupid things, things that could leave me physically incapacitated.

Back to my chemo life, I checked my numbers earlier this afternoon. That means that I consulted MyHealth, an online access to lab results, imaging, appointments, etc., to see what all the blood tests I get periodically can tell me about my state of health. I have results as of May 4th, 2021. Looking at the results you’d have to conclude that you were looking at the blood serum of a very healthy person of my age. It seems that the chemo meds that I’m on now are doing the trick, that is they are suppressing my myeloma down to levels seen in healthy individuals.

Too bad my blood serum won’t maintain that level of normality for any length of time. My myeloma is kept at bay as long as I keep taking my chemo meds. Stop taking my meds and the myeloma wants to kill, kill, kill. The amount of time between when I stop taking my meds and the resurgence of the disease can vary a lot. The last time I stopped taking my chemo meds it was only a matter of a couple of months before my myeloma was back and as active as ever.

With this new chemo regimen it looks like I may get a better result than I got last time. It also looks like I’ll have a long-term relationship with some of my chemo meds. I’m not sure which ones at the moment.

The way these things work, chemo meds only work for a certain length of time after which a new cocktail of chemo meds needs to replace the meds that are no longer working. It looks like the Daratumumab/lenalidomide/dexamethasone triumvirate is going to give me a longer period of remission than I had the last time I went off chemo meds. I’m hoping for years of remission but that’s yet to be determined. If I could get a modicum of mobility as well as ability to use shop tools and studio materials even for a few months I’d be happy. So far my Dara/Lena/Dex trio is doing the trick. I hope it continues that way and buys me some more time.

All I can do is take it one day at a time.