Remission!

I spoke with my new BC Cancer Agency oncologist yesterday. We had a nice chat about our alma mater and the weather, but we also discussed my myeloma. Of course we did!

He told me that I am effectively in remission. There is no trace of the myeloma protein in my serum. That, I would say, is great news. That doesn’t mean that I don’t have cancer anymore. Myeloma is incurable but it is treatable. The hope is that I can go some time without needing chemo.

While I don’t have any trace of the myeloma paraprotein in my serum, I still have issues related to myeloma and I have to live with the side effects of the chemotherapy I was on between December 2019 and June 2020. I have lots of peripheral neuropathy or nerve induced pain and weakness in my legs. I also have back pain for which I need to take opioids. My oncologist has ordered a spinal MRI to see if we can pinpoint the specific cause of the pain. I do have residual pain from surgeries I had on my lumbar disks and from the removal of my left kidney in 2002 because of kidney cell cancer. To help us figure it all out I have pain specialists (palliative care doctors) on the job. With them, we’re trying to determine what kinds of medication I need to take and how much.

It’s complicated because there is some pain that is muscular in origin, other pain that comes from problems with connective tissue and then there’s nerve-induced pain. Different meds are required for the different types of pain. For example, opioids aren’t much good against neurological pain but they work on muscle-based pain and to some extent on connective tissue pain. Right now I’m on two main pain medications and a couple more on standby. Hydromorphone isn’t much good for neurological pain but it works for my back pain although the dose is critical. My age is working against me too. It’s normal in ageing to have weakened muscles and degenerative connective tissues. My body is ganging up on me! But I’m fighting back!

One thing I aim to do is increase my physical exercise as much as I can. That means walking more. I have to be careful because my balance isn’t great, but I can walk maybe two kilometres a day using one or two canes. I can also, on rainy days, use our semi-recumbent bike for twenty minutes a day. We also have light weights I can use and stretchy cables (?).

That’s enough for now. I just wanted to give you the good news. Today is such a great fall day. This red maple in front of the house is living up to its name. Every day it gets redder, then it seems like overnight all the leaves are on the ground.

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AND, haha…there’s a snowfall warning for tonight and Friday morning at higher elevations (which could mean Cumberland). ❄️🌨❄️❄️❄️⛄️ Sleep tight!

62 Meh…and sporangia.

Not much motivated to write about my myeloma journey right now. My last post was on August 23rd. Today is Monday, September 14th. For some time I tried and succeeded in putting out a blog post almost every week but lately with the uncertainty around my treatment, I’ve lost interest. So, it’s been three weeks since my last post.

I talk to my local oncologist in a couple of days for fifteen minutes or so but he doesn’t make the major decisions around my treatment. I have a meeting scheduled for the consulting oncologist next month, but I have no expectations around that consultation. It will be the first time I talk to this guy. He’s new in town. I’ll be just another file to him.

From my last set of blood tests I know that my blood is pretty much normal. That will change. Technically, if I’m considered in remission they’ll do more blood tests every three months and reconsider my situation then. But right now, I don’t know if I’m in remission or not.

I already told you that I decided to cut my chemotherapy short about six weeks ago now because one of my chemo drugs was playing havoc with the way my muscles are supposed to respond to the neurological signals controlling them. My thigh muscles are particularly affected by bortezomib (trade name: Velcade), the offending drug, to the point where I experienced severe pain and weakness in my legs, especially in my thighs. That situation seems to be improving slowly. I’m taking some good pain meds and they are helping the situation, and I’m seeing a physiotherapist, but I think just being off chemo is making a big difference.

It’s been a roller coaster ride over the last few months. I’m tired of it. Thankfully, being off chemo is giving me some respite although I still have great fatigue and restricted mobility. I am doing better and I’m happy about that. Lately I’ve been able to draw and paint a little and use my microscope, telescope, and iPhone to put together some interested projects. I can’t do anything for more than a couple of hours at a time, but that’s infinitely better than staring at the ceiling all day long. I’m actually enjoying myself. I have a secret dream, however, that I shared with my physiotherapist. I shouldn’t tell you because if it doesn’t happen I’ll be sadly disappointed, but I’m determined to get into (and out of) our canoe next month and paddle around for an hour or so without assistance and without dropping like a heap on the ground unable to get up. That would be cool. I also want to drag the trailer to Strathcona Park next month for a couple of days of camping. My real secret though is that I want to restore our canoe. I can’t face that task right now, but maybe later this year, who knows. Over the past while I’ve accumulated most of the materials and tools needed for the job. Now I just need energy and strength in my legs.

In any case, while I wait to see what will become of me and how much time I have to live, I’ve been able to occupy my time productively within the limits of my illness. Well, it wouldn’t do to just idle away my time now, would it and just passively wait to die? No! In our world idleness is the work of the devil! Can’t have that.

Wait, I can see it now. I’m on my death bed, hours if not minutes from expiring permanently, but I think that I’ve left something unfinished. No! Can’t do that. Must…live…long…enough…to finish…this…blog…post. And I do. And I die happy.

Of course worrying about a bucket list or unfinished projects or missed communications is all moot. After we’re dead, there is nothing. Concepts like regret are irrelevant. Even if one believes in an afterlife, I can’t imagine anyone thinking that afterlife would be taken up with regrets about things left undone or unaccomplished in life. What a drag that would be.

One thing that’s given me a lot of pleasure lately, as I note above, is exploring the microscopic world with my microscopes and iPhone. And I’ve discovered that I can use my iPhone to record an image on my spotting scope. I’ve posted those images on Facebook so I won’t post them again here. However I will post here a couple of videos I did of sword fern sporangia. I posted a video here of an exploding sporangia some time ago while it was still attached to the leaf. This time I scraped the sporangia off of the fern leaf and that provoked them to open up en masse. The videos are at two levels of magnification. There’s a close-up one and one at a lower level of magnification.

The spores are quite visible after the sporangia have evicted them. They’re the little beige dots littering the area not covered by sporangia. I want a microscope powerful enough to have a closer look at spores, but what is interesting to me even at this level of magnification is that we normally associate movement with animal life and here we have a plant that is moving…with purpose.

I love that as I look at the world through a microscope it’s obvious that all living things on this planet have a lot in common. Carolyn and I watched a YouTube video (NOVA) the other night on DNA called What Darwin Didn’t Know. It really reinforced the fact that DNA is ubiquitous and that life is much more unitary that we think. We really are all in this together. It would be awesome if we could develop respect for all life, all of us that is, including Monsanto and Bayer executives, oil company boards, politicians and all of us. Of course, respect for life also means respect for death, because they are not separable. Life depends on death. We don’t respect death now. We fear it. What would respect for death look like?

PS: I hope the videos work for you. If not, please let me know. For those of you receiving email notifications of my blog posts, you may need to go to the blog site to see them rather that stay on your email to view them.

PS2: My next blog post will be completely different from what you’re accustomed to read here. It’s about a brother I would have had if he had survived childbirth.