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.

Be a Blogger They Said!

I don’t know how many times I sat down with my computer with the intention of writing this blog post. It’s frustrating no end. I write a few words then my brain just clams up not even allowing a single word license to start a sentence.

I guess after over five hundred blog posts, I can legitimately call myself a blogger. However, right now I’m feeling that my blogging mojo is taking a bit of a vacation. The last time I wrote anything on this blog was on April 11th, 2021. It was always my objective to produce a blog post a week. I was particularly successful in that after my myeloma diagnosis in October, 2019. Lately my resolve has been ground down by the utter tedium of my biweekly Daratumumab infusions and the overwhelming fatigue that are side effects of chemo meds. I can blame my chemo meds for my lack of productivity. I think that’s legitimate. But it’s frustrating none the less. Well, I can’t write worth a damn but I can sleep, that’s for sure.

Sleep! Wow, do I ever get a lot of sleep. It’s not unusual for me to sleep for 12 hours, say from 8 PM until 7 AM. Moreover, I’ll often nap sitting in my chair or even crash in bed for an hour or two during the day. Take today for example. I slept soundly last night with just one pee stop, then woke up again around six o’clock needing to pee I thought but no, I didn’t pee. I went right back to sleep and woke up at 8:28, two minutes before my med alarm. I usually get up by 7:30 at the latest, but not this morning. I actually woke up with a start, confused by the dream I had just had, a dream with my bedroom appearing as a recurring elements.

Over the past few days I’ve dreamt every night, and I’ve been able to recall my dreams. They always start with me in bed in the bedroom, confused by the room, where it is, and how to get out of it. I didn’t have a weird dream last night, but the night before, I dreamed that I woke up but it was so dark, I had no idea where I was. So, what to do? Slowly I got out of bed feeling around for a wall. I felt around tentatively for some time before I touched a wall and started off to the right feeling for something, anything familiar. I found nothing for some time then I felt what could have been the closet doors. I’d gone too far! So I backed down the wall feeling carefully for the door. Finally I found the door and opened it! And found myself just outside the bedroom by the washroom. That’s when I woke up, I think. On another night I dreamed that I was sleeping in the bedroom but that I had to wake up to go pee. This time I found the door easily enough, went out to have a pee, then leaving the bathroom I quickly realized that I was not in our house and that this place was totally unfamiliar to me. I immediately thought “Alice in Wonderland.” And that was about it just as I woke up, thankfully in my own bed and in my own bedroom.

The thing is that in these recurring dreams over the past week or so, I always woke up feeling trapped in a sense, at least trapped in the sense that I couldn’t find a way out of the bedroom, or if I found my way out of the bedroom, it wasn’t always in a familiar place.

Of course I immediately tried a little self diagnosis. The feeling of being trapped or unable to find a familiar place I felt might be analogous to the way I feel sometimes about my cancer. It’s a dark place with nothing familiar about it. Carolyn came to that conclusion too as she observed me going in and out of the hospital, taking chemo meds and being exhausted all the time. She psychoanalyzed me and came to these conclusions maybe even before I did!

The cancer I have is obviously unfamiliar ground, but it’s just a preliminary to death and dying. Even in my waking life I feel trapped by my cancer. There’s no way out of it. Or rather there’s just one way out of it because it is incurable. The way I see it, when I die I fall into a box with no past, no present, and no future. It’s a place, really, where even I don’t exist. I is a character that is only relevant in life and has no reality in death. Dying, then, is a process of the I fading away into nothingness.

This is enough for today. I’ve been sweating buckets just getting these few words out. I’ll try to get another post out in a week. I hope that by then I don’t still have a plug in the part of my brain that writes!

I want my goddamned life back!

I may want it back, but of course I can’t have it back. I can never have it back at least not the way I lived it when I was fifty years old. We can’t live backwards on this planet. It’s just not possible to go back in time. Furthermore we can’t achieve the physical vigour at seventy that we had a forty. Cognitive vigour is another thing entirely, but I find that since my retirement, I’m just not as sharp as I used to be. Writing this blog helps me keep my cognitive skills in some state of repair, but it’s harder all the time to maintain a certain level of critical skill when the couch beckons. It’s perfectly okay to be lazy in old age although lazy has a moral connotation that doesn’t apply to inactivity in old age. Strangely enough, there is an expectation in our culture that the aged should be occupied at productive activity even in old age, or we should at least go golfing and volunteer at the local SPCA. I was caught up in this moral silliness for a while, but cancer soon disabused me of any expectation that I could stay active in old age. My mobility is highly compromised and was even before my cancer diagnosis. But that’s okay. I had my time being physically active and strong. Our lives are made up of stages. I’m on the last stage.

Every now and then I forget how old I am and the fact that I have cancer, arthritis, and degenerative disk syndrome. In this forgetful state I try to do things that I did easily when I was 30, 40, 50, or 60, even 65. For instance, today I got it into my head that I could still chop wood. Silly man. It was just one piece. I thought there would be no harm in that but Carolyn reminded me that I would pay for my silliness later, maybe tonight. The thing is that one of my chemo meds is a steroid called dexamethasone. I take it just before I go to the hospital for my Daratumumab infusion. It reduces pain and increases stamina. It also gives me the shakes and a false sense of capacity. That’s when I think I’m still physically capable of doing things like working in my shop or cutting woodblocks for printing. [I haven’t given up yet, damn it.]

So, that’s it. We all know that human life is finite. We speak as though we understand and accept that. But you know what? There is a ton of research that establishes beyond a doubt that we generally do not accept the finality of death. I’ve written about the denial of death over and over again for decades. But you don’t have to count on me for information and confirmation. Just consult the bible in your hotel room. Or just go to the religion section in your local library, although I’m reading a novel at the moment that deals with death avoidance in quite a non-religious, creative way. The novel (the last of three in a trilogy) is set on Mars sometime in the future. It’s called Blue Mars which follows Green Mars and Red Mars. About half way through the book one of the lead characters, Nirgal, who was born on Mars, takes a trip to Earth (Terra) and almost dies. To understand the quote below it’s important to know that Martian scientists had developed a longevity program that allowed people to live much longer than they would normally have. People would have to have this procedure involving stem cells and telomeres repeated at intervals. Some of the characters were a hundred and fifty years old and more.

“But Nirgal had seen Simon die even though Simon’s bones had been stuffed with Nirgal’s young marrow. He had felt his body unravel, felt the pain in his lungs, in every cell of him. He knew death was real. Immortality had not come to them, and never would. Delayed senescence, Sax called it. Delayed senescence, that was all it was; Nirgal knew that. And people saw that knowledge in him, and recoiled. He was unclean, and they looked away. It made him angry.”

from “Blue Mars (Mars Trilogy Book 3)” by Kim Stanley Robinson

So, even in this scientific, atheistic world, people longed for a longer, productive, and meaningful life and a painless senescence followed by immortality yet as Nirgal points out, ‘delayed senescence’ is all that people could hope for. Even if they lived to be a thousand years old, their lives were still finite, albeit much longer than what one could expect without the longevity treatment. As the quote highlights, people sensed that Nirgal knew about mortality and shunned him for it.

I understand senescence because that’s what I’m living now. It is not delayed for me. Chemotherapy is nothing more than a longevity treatment. As we undertake chemotherapy we expect to live longer (see my next blog post) but, as I’ve learned, the price of chemo for me is reduced capacity although that’s not true for everyone and for every kind of chemotherapy.

# 80 Fun and Games with Daratumumab

It’s been almost a month since my last post. It’s not that my life has been uneventful and I have nothing to write about. On the contrary, my life over the past month has been just plain weird. Living with chemo is by definition weird, but this month has proven to me just how weird it can get. Just living it has been weird enough. Writing about it near impossible until now.

I was probably optimistic in my last post about the effectiveness of Daratumumab as an addition to the usual chemo cocktail that is given to myeloma patients upon an initial diagnosis. I’m quite confident that Dara had a huge effect on my blood serum as evidenced by my lab results, which are anything but spectacular in the about face changes that have occurred over the past month in reducing the myeloma proteins in my blood. But at what cost?

One thing I have quickly learned is that life in chemotherapy is completely unpredictable. Get used to a particular effect of the drugs and it’s sure to change the following week. So over the past month I’ve had to go to emergency at the local hospital a couple of times for bizarre spikes in my temperature. Normal body temperature is an average 37˚ Celsius or 98.6˚ Fahrenheit. My temperature is normally around 36.5˚C. We all have some variation in our body temperature depending on what we’re doing and what the environmental conditions are that we experience. All the instruction literature we get as chemo patients tells us that if our temperature goes up to 38˚C that we should immediately get ourselves to the hospital. Well, that happened one day early in the month and we dutifully got to the hospital.

Well, we went unprepared. How would we know? I was not equipped to spend three hours in the hospital never mind three days. I had no change of clothes, no toiletries and nothing to drink or eat. These were all things that I would need. I was upset because my phone was running out of power and I had no way of recharging it. I asked a nurse if there was anyway of charging it. She took it away with the promise of charging it. I inquired about it a few hours later and she had trouble finding it to start with and it had not been recharged at all. I called home and Carolyn sent up some much needed supplied including a phone charger. Still no changes of clothes however and no toiletries.

Initially I was put on a gurney then transferred to a bed in an isolation room because the staff knew that I had myeloma and hence über sensitive to infection. I was immediately hooked up to a whole set of monitoring equipment and an IV was used to pump me full of antibiotics. The fear was that I would go septic and that’s a death sentence. I slept fitfully the first night and broke out in a cold sweat every once in a while. I had a very local cellulite infection in my lower right leg but that was discounted as the source of my fever. Apparently the cellulite was coincidental.

Later that day I was moved to another room in the emergency ward right at the back of the ward with nobody around. It was quiet and they had by then removed all the wires that connected me to the monitoring equipment although the IV was left in place. I got something to eat. Hospital food is a standing joke, but it was no joke for me. I wasn’t expecting gourmet restaurant dining, but I didn’t know they could do that with eggs. I was hungry enough to force it down but a steady diet of that food would be a great weight loss plan.

Thankfully I was transferred to another ward on the third floor later that afternoon. The food didn’t improve but the surroundings sure did. I had a large room with an adjoining bathroom. I asked for toiletries and was provided with a toothbrush and toothpaste as well as a towel. My GP came to see me both while I was in emergency as well as when I was in D3 the ward I to which I was transferred from emergency. I was in the ward just a day and a half. My temperature had returned to normal by then. My GP informed me that I had a non-specific infection. They couldn’t determine why my temperature had risen as it did. The docs don’t like it when they can’t pinpoint the source of an infection. I figured that it must be an artefact of the chemo meds or my myeloma. The literature on my meds states clearly that fever can be a side effect of the drugs. That’s what I’m going with. As an aside, Carolyn just took my temperature and it was 35.4˚C. It has been as high as 38.3˚; clearly, it’s all over the place.

My GP sent me home, thankfully, the third day I was there. They couldn’t determine any cause of my fever so there was no point in keeping me in the hospital where space is at a premium. I was very happy to be going home but there was obviously something haywire somewhere so I was a bit apprehensive about it. From this day on Carolyn would take my temperature and it would fluctuate wildly but generally settle around 36.5˚C. An effect of my hospital stay is that I missed my first week of chemotherapy. We had to reschedule my program so that my chemo would start the following week on Thursday. That first few hours of chemo was a bit difficult as my body became accustomed to being assaulted by these foreign substances, especially the Daratumumab. I spent seven hours the first day and seven the next at the Cancer Care Centre at the hospital while they infused me with Daratumumab. I had a rough go of it to start with dry heaving and whatnot but it smoothed out and I have had no undue effects since.

Throughout the month my temperature fluctuated between 36.5˚C and 38˚C. It never stayed at 38˚C for any length of time so now the issue for us was when to go to the hospital and when to wait for my temperature to go down to something more normal. Well, the decision was made for me this week when on Monday I started feeling odd. My temperature was high but I was in no mood to go back to the emergency department at the hospital so we decided to wait and see. On Tuesday morning I was not feeling well at all and stayed in bed all day, something I had not previously done at all. My temperature fluctuated some during the day but was higher than normal most of the time. I noticed that my legs were sore but that was nothing new. I ‘slept’ that night but I think that unconscious would be a better description of what I experienced. On Wednesday morning early Carolyn called 911 and an ambulance came and took me to the hospital. I was effectively paralyzed from the waist down and had a high temperature.

This experience in the ER was light years different from the previous one. This time I felt respected and was treated with kindness and care. The ER doctor called for some blood and urine tests. Everything came back normal. I could stand now and take a step or two but I was very unsteady on my feet. We all decided that I should go home.

The issue that dogs us now is determining the causes of my fevers. I spoke with my local oncology GP and we decided that I would forego my Daratumumab infusion this week to see if that might make a difference to my temperature fluctuations. The jury is still out on that one. More on this in my next post which will be sooner than later.

#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.