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.
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.
*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.