# 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

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

#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.

#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!

____________________________________________________________________________________________________
*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.

#77 I Carry On.

#77 Mid-February. Snow blankets the property but thankfully it didn’t fall when I was scheduled for chemotherapy at the hospital. It looks like it is respecting my hospital schedule of appointments. My next appointment for chemo is on the 18th, Thursday. I was successful with my first dose of chemo drugs last week, but there was a glitch in my chemo dates. I developed a fever on February 2nd in the afternoon. My temperature reached 39˚C on the 3rd. One thing we are told over and over again as myeloma patients is to go to the hospital if you develop a fever at all. So, off to the hospital I went. I ended up in the Emergency department for a day or so before they wheeled me up to D3, a ward on the third floor of the hospital. Thankfully I wasn’t there long. My docs tried to figure out what caused the fever, but they weren’t successful. They pumped me full of antibiotics in case of sepsis, a very reasonable thing to do. I developed some cellulitis in my right ankle, but that did not prove to be the source of infection. It may be that the fever was a product of a random myeloma issue. One thing is certain. I do not want to repeat that hospital experience. 

What the Emergency Department interlude produced was a delay in the start of my second round of chemo. Turns out I started with the first full day of infusion on February 11th followed by a slightly shorter day on the 12th. I was supposed to start this course of therapy on February 3rd

I’m not sure what to think at the moment. My first dose of daratumumab infused was successful. I had only a slight reaction to it. That’s really good. I hope the rest of the daratumumab infusions go as well. If they do, after having weekly sessions for a couple of months, then bi-weekly ones, I end up with infusions once a month for as long as this cocktail of daratumumab, lenalinomide and dexamethasone works. I’m hoping for a long respite from active myeloma. Of course, as I’ve often repeated, myeloma is incurable, but it is treatable. Given all the challenges I face, I’m determined to make my 80th birthday, that’s six years from now. 

For the time being, my hospital visits for daratumumab infusions regulate my life. It’s really not so bad. The nurses in the Cancer Care facility at the hospital are great and make me as comfortable as possible for my infusions. One thing that may throw a wrench in the works is the very likely possibility that I will need radiation therapy on my jaw. I will have to travel to Victoria for that. I consult on the phone with a radiation oncologist tomorrow morning. I’m not sure what we can accomplish on the phone, but it’s a start. The pain in my jaw is pretty insistent. 

My family is my salvation. Carolyn is amazing and makes sure I get my meds when I need them. I take quite a cabinet full of meds twice a day. I’m hoping to modify the number of drugs I’m taking. I may be taking too much in the way of pain management. The effect of my pain meds is dizziness. In the mornings I can predict exactly when the dizziness will come on. It doesn’t bother me in the afternoon because meds have worn off by then. 

Throughout all of my myeloma life I try to keep a real connection with the action around me on the property. We’re getting a number of birds at the feeders. The jays are right into the suet and now we’ve got some woodpeckers, varied thrushes, and towhees coming to the feeder. Some flickers join the other birds competing for the suet. The smaller birds like the finches, pine siskins, goldfinches, and nut hatches focus on the black sunflower seeds and nyger seed in the feeders themselves. It’s sunny today and the snow is melting. Tilly, our Bernese/Shepherd cross loves this weather and makes nests in the snow on the deck. 

She spends way more time outside now than inside. She is a sweetie although I wish she wouldn’t bark quite as much as she does.

I’m refractory!

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

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

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

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

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

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

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

African violet

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