#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!

# 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.

#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.