MAID and Aggressive Myeloma

So, things are moving along. To recap: I went into the hospital for my infusion of the chemo med Carfilzomib on September 15th. On the 15/16th during the night I didn’t sleep at all because I was in an altered state and shivering uncontrollably. In the morning, we called the Cancer Care Centre at the hospital, and they told Carolyn to take me to Emerg right away. It was a good thing she did because my kidney was shutting down. They kept me in the hospital for three days on an IV (lactated ringers) and a catheter, but you already know that. Fun and games. 

Now, I’ve decided no more chemo for me. It’s been three weeks. It will be some time before I know what the result of that decision will be, but I will not recover from myeloma. Last week I had a chat with a palliative care doctor. She just called me a few minutes ago to see how I was making out with a new prescription for dexamethasone. We also discussed some more imaging for my leg and side (for a plasmacytoma) in preparation for some radiation therapy in Victoria sometime in the future, who knows when. Just don’t wait too long. The palliative care team at the hospital has been so kind and helpful. 

The hospice staff has been wonderful too. They’ve laid out all the care possibilities to help as I get nearer to ‘the end’ as they put it. This afternoon Carolyn and I had a chat with a doctor that provides MAID services. I’m all set up for that. I don’t have a date or anything like that, but I do have all the paperwork done for when and if I decide it’s time. He was great. He’ll call me in six months to see how things are going if we don’t call him before that. At that point (April 2023) if I haven’t called for MAID, we will need to redo the forms. 

An aside: the weather has been sunny and dry. Warmish too. We really need rain, but this is quite pleasant. I’m sitting in the living room but with the door to the deck open. Such an agreeable late afternoon.

Saturday, October 8th, 2022

Before I forget, I want to note that I learned a new term yesterday talking to the MAID doctor: anticipatory grief: Anticipatory grief refers to the sorrow and other feelings you experience as you await an impending loss. It has some benefits: It may help you find closure, settle differences, or prepare yourself for the pain of letting go. This kind of grief can come with lots of other emotions, including anxiety, guilt, fear, and irritability.* There is no doubt that I am feeling anticipatory grief, and so is my family. Of course, my grief is for the end of my life. For my family, the grief will extend after my death but in a different form.

It’s disconcerting to be so unsure of the future. We have no idea what the estimated time of death is. We’ll discuss that with the oncologist this Wednesday. He may have some insights by looking at my bloodwork. The most concerning number, although there are a few, is the rise in my lambda Free Light Chains. Now that marker and its number won’t mean anything to you, but what it describes is the amount of myeloma protein in my blood. The reference (normal) range for this indicator is 5.7 mg/L – 26.3 mg/L. My blood as of three days ago is 589 mg/L. On December 13, 2021, it was 11.7. Then it went up to 174.2 on June 27, 2022. Since, it has gradually made it up to 589 mg/L. It can’t go much higher without damaging my kidney. 

In fact, my kidney is already compromised to some extent but it’s still hanging in there. I would speculate on my survivability now, but I think I’ll wait until we have a chat with my oncologist on Wednesday. I know that my type of myeloma is particularly aggressive, so we’ll see. 

Strange as it may seem, if you came for a visit today, you’d probably say: “Hey, you look good!” I would respond: “Looks can be deceiving!” The disease I carry is all on the inside. There isn’t a lot of evidence of it on my body. My insides are scary though. Good thing you haven’t got x-ray vision like Superman, otherwise you’d see the mess in there. 

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*From: https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855

A Time to Die?

Well, howdy there internet people, it’s me again. Visited my local GP/oncologist this morning. He showed us images of the growth that is happening alongside the left side of my spine. I think it’s trying to replace the kidney that I lost in 2002. It’s big enough. Just kidding, of course. The growth is pretty impressive, let me tell you. I’m not feeling any ill effects from it at the moment because it hasn’t gotten into my spine. If it had, I’d be paralyzed. It is large, however, and nothing to sneeze at. Probably not immediately life threatening, but I have enough other issues to think about that are threatening my life, not the least of which is my age.

I’m feeling very strange at the moment. I am still sentient from what I can tell, although I’ll leave it up to others to confirm. Sentient or not, I’m close to death. From what I’ve read about Medical Assistance in Dying (MAID) people are often sentient until the last minute. Maybe I can shoot for that although being zonked out on morphine has its appeal too as I slip off into death.

My local GP/oncologist is in contact with the oncologist in Victoria at the BC Cancer Agency who looks after my file, and he (Macpherson in Victoria) doesn’t support the idea of my getting another shot with another chemo protocol. I’m done as far as he’s concerned. He expects more chemo would just be futile and would not enhance my life chances a whole lot. I will know the results of my latest bloodwork late next week and that will help me decide as to whether or not I push for a second opinion and for another chemo protocol. Whatever happens, as Carolyn points out, even a new protocol would likely give me just another nine months of life at best, so what’s the point?

It may be time for me to accept the increasingly obvious fact that my life is done. Well, I may have a few more months to live, but not years, certainly not years. I don’t know, but going off chemo may give me a few months of relief from side effects. That would be nice. Already, I’m starting to feel my lips again. Lips I couldn’t feel, constant sore eyes, and plugged ears were Daratumumab/lenalidomide side effects. Since I stopped infusing Dara things have settled down. Carfilzomib has its own issues, but so far I have been able to deal with them. Whatever happens, I could still take hydromorphone for pain, and maybe even increase my dosage. I mean, what the hell do I need a brain for anyway? [Well, maybe for writing a few more blog posts!]

Then, when the time comes, I just give the Hospice Society a call. I may opt to die in a Hospice bed, but I may decide to die at home, although I don’t thing I want to put my family through that. Caregiving is tough enough as it is. It’s true that watching me die might be okay with them. I don’t know. We’ll have to discuss it. MAID is definitely an option. We have discussed that.

I, along with many of my siblings and relatives, sat around and watched my mother die in her bed at The Dufferin in 2018, the care home in Coquitlam she lived in for many years with my father before he died in 2007. She had dementia quite badly for the last few years of her life, and as she lay there dying she had no idea about anything, which is consistent with the last 25 years of her life. The nurses just kept pumping morphine into her veins. That kept her quiet. I suppose I could tolerate an ending like that, but I don’t have dementia. I would probably be conscious and sentient until the end. That’s fine as long as I got the morphine too. I’m not a big fan of pain.

I told my local GP/oncologist that I may go for a second opinion. I may. I may not. Probably not. It all depends on how I come to accept my end times. I find it hard to even think about death and dying. It doesn’t come easily to my imagination. Oh, every once in a while I lay in bed just before falling asleep in the evening and I think “What the heck? When it’s done, it will be done. No regrets.” Then, I get scared. I imagine myself in a cardboard box on my way to the crematorium on the hill. That’s fine, but I need to know that I’m really dead before that happens. I’m not keen on feeling fire on my skin. Of course, I’m being silly. I will definitely be dead by then. My box is on a conveyor belt. There are a couple of bodies ahead of me laid out in fancy coffins. They’ll burn real good! I’ll have to wait to get turned into ash powder. But it will happen. Later, someone will give my family a package of ashes that will have been me. I don’t care what they do with it, but I hear that the family has a cemetery plot in Vancouver. My wonderful niece arranged that. So, that’s it.

Goodbye life.

PS: I’ll write my obituary sometime. Not just yet. You’ll have to wait for it a while longer.

Carfilzomib and Buttle Lake

Wednesday, August 17th, 2022 – 2:30 PM

Just got back from the hospital for the first infusion of carfilzomib for the second cycle of this protocol. It went well, but as usual, I’m dexed out. Given this was my second cycle I didn’t have to stay after my infusion for an hour of observation. I had to go to the lab yesterday for bloodwork and the results were available today for us via MyHealth. Things seem to be going moderately well from the looks of my bloodwork. I have some reduction in my paraproteins (not that you should know what that means) which is good news but my kappa free light chains are going up. That’s not good.

However, we did a fair bit of reading about carfilzomib and one of the nasty side effects of that drug is renal toxicity. Given that I have only one kidney, that’s not great news. We just have to hope for the best.

As I said, I had to go to the lab yesterday for tests. What I didn’t say is that we spent the last three days at Buttle Lake in Strathcona Park for a bit of camping with the family. Yesterday, we had to race back to Courtenay to get on the lab waitlist. Around noon I started out at 29th on the list as we came into Campbell River but when we got to the hospital in Comox an hour later, I was down to 10th place which is quite acceptable. I didn’t have to wait too long to get my blood extracted.

Sunday, August 14th, 2022 –

We packed up yesterday and this morning. We were in four vehicles. I rode shotgun in the truck. It hauled most of the food, the banana boats and me. I won’t identify individual family members here. Suffice to say that there were enough of us to pilot four vehicles along with some passengers. We’ve been camping at Ralph River campground on Buttle Lake for upwards of thirty years. We’ve had some wonderful times on that lake, and particularly at that campground. It was such a pleasure getting back there. Frankly, I doubted that would ever happen.

From 2019 a few months before my diagnosis

I already posted this photo on this site, but I decided to post it again because it tells a story of how we had such great fun improvising and adapting the canoe with outriggers, a sail and electric motor. We’ve had the canoe for over forty years. We’ve had such great times with this canoe for decades! This boat didn’t come with us on this trip. I’m not ruling out the possibility that it will again feel the waters of this lake on its keel. Chances aren’t great, but we’ll see.

When the picture above was taken, so was the picture below.

Buttle Lake at Ralph River

You can see that these stumps are a predominant feature in the landscape. Who knows why the loggers left them (probably no need or profit in removing them) but they did and I took the opportunity to draw and paint them*. I can’t remember exactly when I drew them, maybe it was 2014, but that doesn’t matter.

You can see the water surrounding the stumps. They are maybe a half a kilometre from the campground and there are connecting pathways. Below is a photo of one of those pathways, the one they built for the movie See with Jason Momoa. That pathway and surrounding terrain used to be clear from the campground down to the stumps with a gravel base and not a lot of vegetation as you get closer to the lake. Now, as you can see, it’s flooded and there’s lots of vegetation, but the rocks that define it are still clearly visible.

The lake must be at least three metres above what it was when I took the above picture in 2019. The stumps are nowhere to be seen. They are all underwater. What a dramatic change! What a metaphor for life! Things can change so quickly and dramatically.

Main pathway from lake to campground.

Monday, August 15th, 2022 – 6:55 AM

I was awake for some time before 6:55, but that’s when I got up. The sky was pure blue. The previous evening it was overcast and spit a little rain. This morning was beautiful. Our campsite was open to the lake but the path to the lake was impassably muddy and crawling with Western toadlets to boot. We really had to go around to Jason’s pathway to get to the lake. I set up a chair in our campsite (called a gravity chair)facing the lake. For some time I watched the sun hit Mount Philips across the lake. Eventually, the shadow cast by the mountains behind us on Mount Philips reached the lake, but by then I was busy doing other things and I got distracted by this as I pushed myself vertical in my chair:

Cedar Boughs.

I actually took this picture later in the day after the sky had clouded over. I stared at this sight for a long time. There is an odd quasi-symmetry to the branches and needles. I contemplated drawing this, but I just couldn’t garner enough energy to do it. Instead, I took pictures and stared. I found looking at these boughs soothing. My pain dissolved. I relaxed completely. Such a great feeling…at least for a time!

I can’t thank my family enough for making it possible for me to get back to this lake and this campground. I’m an old man now. Many of the things we did for years like camping and messing around in boats are just not possible for me anymore. Maybe if it were only a question of age, but it’s not. Myeloma and chemo complicate matters immeasurably. Still, when I was at the lake I could much more easily recall so many pleasant experiences we had there. I love that place. It’s so much better to feel love for this place and for my family than to dwell on my health or lack of it.

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*See my art blog for images of the Buttle Lake stumps in ink and pencil: https://rogeralbert.blogspot.com/p/drawings.html

The habit of life and a new chemo protocol.

July 18th, 2022

So, we went to the Hospital this morning to the nuclear imaging department to get a baseline assessment of how well my heart is pumping blood. That’s in preparation for my initiation into a new chemotherapy regime starting tomorrow since the one I was just on including lenalidomide, dexamethasone, and Daratumumab wasn’t working anymore and it was producing some very interesting symptoms like temporary paralysis or what my GP considered seizures. These ‘seizures’ didn’t last for more than an hour or two, but had lasting effects like extreme fatigue and headaches. I thought I might be having a stroke or something of that nature, but that’s not likely. In any case, my GP ordered a CT scan of my head. It found nothing! ⁉️He also ordered an MRI of my lower back. That will happen at the end of August. That might be revealing. I’ve had issues with my lower back since I was twenty years old.

Also this morning I injected one milligram of vitamin B12 into my left thigh. I do this every Monday because I have an inability to absorb B12 from food. Sometimes I inject it into my right thigh, just for variety. If you’ve never been tested for B12 you might want to consider it if you have a lot of fatigue. That may not be easy if you don’t have a family doctor, but worth it, if for nothing else, to discount it.

Tomorrow afternoon I go back to the Hospital for my first infusion of carfilzomib (trade name is Kyprolis). It has some interesting side effects and reportedly is hard on the cardio-vascular system, but is touted as a solid replacement for Bortezomib (Velcade). It’s relatively new on the market.

All the things I note above are to give me a longer life. That’s the goal. I’m into that, but eventually I’ll have to kick the life habit. We are creatures of habit. (see my note below) Are we ever. And the biggest habit we have is life itself. No wonder we are so reluctant to give it up.

July 19th, 2022

Well, tomorrow is today. Went to the hospital’s Cancer Care Centre for a 1 PM appointment for an infusion of carfilzomib. I got a low dose infusion, forty-four milligrams. I experienced no adverse effects that I noticed. My next infusion, next Tuesday, will be one hundred and fifty-four milligrams. That will be the ongoing dose I get every week for three weeks, then I get a week off before going back for another round of three weeks. So, my life is pretty much tied to the hospital at the moment. I may be able to alter my regimen a bit, but I don’t want to mess with it. I think that consistency is a major part of chemotherapy and I want this protocol to work for me for the foreseeable future. My foreseeable future is shrinking every day. That’s fine. That’s life. It’s interesting as I watch myself go through what little is left of my life, the recognition that my energy levels are dropping fast and that I can’t do things I recently took for granted. I have no regrets. I understand evolution and the need for death. I’ve played my part and will continue to play my part until there is just nothing left of me.

July 20th, 2022

Yesterday was a day filled with anxiety and doubt for me. A new chemo regime is always stressful. Will it work? Will I experience nasty side effects? Is this my last kick at the can? So many questions.

Thankfully, the crew of nurses and support staff at the Cancer Care Centre are amazingly calm and systematic. They patiently answer all of my questions, and this time around I had lots of them.

My infusions of carfilzomib are just a half hour long compared to one and a half hours for Daratumumab in my last protocol. However, for the first three weeks this time around they have me stay for an hour after my infusion for observation. That’s a good move because anything new like this is cause for caution. We were out of there by three thirty. Still, It’s an afternoon a week, and I need to be close to the hospital. No travel abroad, that’s for sure. I’m fine with that. Not much interested in travel right now in any case.

One thing I’ve noticed since I’ve been off of Dara and lenalidomide is that some of the symptoms I’ve been experiencing around my face seem to be attenuating. I can now feel my lips coming back online and my eyes don’t feel as puffy and buggy-outy as they have been for some time now. Maybe, just maybe, I’ll feel a little more ‘normal’ now. I hope this trend continues. The sensation around my eyes is particularly disconcerting. Anything to relieve that is good news. I’m feeling optimistic about carfilzomib but there’s a ways to go yet before we have any sense of whether or not it’s working to keep me alive.

I sleep well these days. That’s great. Of course, dexamethasone will mess with my sleep. I expect that and adjust as needed. It means that I may just read a little longer after I go to bed or wake up later and need to read a bit again before I can get back to sleep. I’m reading Agatha Christie at the moment. She’s such a good writer. There’s lots of murder and mayhem in her books, but some great problem solving too. Poirot and Hastings are principle characters in many of her books. Their interactions create a wonderful backdrop for their crime solving endeavours. Hastings is a great foil for Poirot. He’s not too bright but he is willing, and enthusiastic. The books do a much better job that the television adaptations of Christie’s work in terms of the dynamics of the Poirot/Hastings relationship. Read on. I paid one dollar on Amazon for all of Christie’s work on Kindle. What a deal.

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Just a note to end this post thing:

The fact that we are creatures of habit will be our downfall as a species.* We can’t seem to kick habits we know are bad for us. We know that fossil fuels are in the process of polluting the planet to such a degree that we may very well not be able to reverse the process. The pollution is what is killing us, not the fossil fuels themselves. We keep driving our cars and trucks. That’s a habit hard to kick because we also have a habit of spending money, and we have to get that somehow. Working for others (employment) seems to be the main way we do that, but contract work is also quite common. Employment is a relatively recent way of organizing labour. I wonder how much longer it will last. What I can guarantee you is that it will go the way of the dodo bird just as everything else does.

One huge issue we face is the generational lag that dominates our lives. We tend to think that we can live the way our parents and grandparents lived. We buy big fishing boats and huge RVs to wander around the oceans and roads like the 20th Century had never passed. We all want to live in detached single family houses (around here at least). Well, our parents did it, why can’t we? Maybe it’s because fish are disappearing at an alarming rate and gas is so expensive and polluting. But we’ll carry on because that’s what we know. We do feel anxious about it. That anxiety sometimes gets squished out of our minds in strange ways such as in ‘freedom’ convoys and ridiculous conspiracy theories. Oh well, steady as she goes. We all get to the wall sooner or later.

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*All animals are essentially creatures of habit. We all develop habits of life, some learned, and some tropismatic. We cling to them as long as we can. So it goes. It works as much for bees, chickens, and elephants as much as it does for humans.