Lassitude – An Addendum

So, on my last post I noted that I’d be going to the lab at the hospital this morning to get my blood tested in preparation for my Daratumumab infusion on Thursday. I told you I’d let you know how it went. Well, I texted the lab at 9 AM. We can get on a wait list if we text the lab. They text back when it’s our turn. I always do that to avoid sitting in the lab waiting room with a lot of sick people. We then immediately drove to the hospital. We got to the hospital at 9:40. I was 37th in line at that point. I waited in the car while Carolyn took Tilly for a walk. 

I got my blood taken at 10:40. Not as bad as it could have been, especially on a Monday morning. When I told the lab tech that I was quite disappointed that VIHA had closed all the satellite labs in the Valley, she said that if they had left them open, they might not be run off their feet at the hospital lab. But then we agreed that staffing was a problem. 

Getting my blood tested within ninety-six hours of my infusion is a must. They won’t proceed with the infusion if my blood shows any kind of wonkiness. In the last few months it’s been brilliant! Last month there was no sign at all of myeloma protein in my blood. Everything is going fine with me on that front. My chemotherapy is very effective and there is no trace of myeloma protein in my blood. 

I had a consult with my local GP/Oncologist about ten days ago. We discussed the possibility of my going off chemo for a short time, but I figured it would be best to wait until I spoke with an oncologist at the BC Cancer Agency next month to entertain such a course of action. I feel so fortunate that I have great care and my prognosis is excellent. Myeloma used to be a killer. It still is, but it’s not a quick killer. It takes its time now. There are some amazing chemo meds that account for the progress being made in the survivability of myeloma patients. The trope now is that we’ll more likely die with myeloma than because of it. Fair enough. Obviously, I want to live longer, but I’m not keen on following my father in the way he died. 

It’s clear that some of my current lassitude is caused by my chemo and pain meds. However, the fact that I’m almost seventy-five is also an important factor. As we were driving to the hospital for my consult with Dr. Bakshi, I happened to notice a cyclist pushing hard along Piercy Road on the way to Highway 19. He was maybe in his fifties. This scene reminded me of years gone by when I rode my bike on this same stretch of road. I’d get tired alright, but I had plenty of strength and endurance. I could easily ride forty or fifty kilometres back then. I still have my bike. It’s a good cruising bike, but I’m almost afraid to get on it because my balance is off, and that’s not good for bike riding. I may give it a shot again. We’ll see.

I guess what I’m saying is that each stage of life has its own characteristics. It’s a bit crazy to think that we should be able to do at seventy-five what we did easily at forty-five or fifty-five. Certainly, there are some people who can still engage at seventy-five in some impressive physical activity. I know some of them, but I’m definitively not one of them. As my GP noted too, having a nap in the afternoon at my age isn’t beyond the moral pale. Today, I didn’t nap in the afternoon. I went down to my shop instead. I had some energy. Better not to waste it. I’m hoping to sleep a little better tonight because of it, but there is a confounding variable in my sleep patterns. Her name is Princess Pretty Paws and last night she damned near drove me crazy. She started meowling at 2:30 or so and carried on for most of the rest of the night. She’s lucky to be alive. 😉

Lassitude

Yes, lassitude, which the dictionary that Apple so kindly provides for us as part of the operating system on my computer defines as: “a state of physical or mental weariness; lack of energy.” That about sums it up. 

I know my expectations for myself are way out of whack. I keep forgetting the basic realities of my life: I’m almost seventy-five years old, I have a slow acting, but debilitating cancer and chemotherapy designed to fight said cancer that has side effects I’ve already discussed on this blog at nauseum. No need to flog a dead horse (as they say). I also have some neck issues that most people of my age get but that don’t afflict all of us in this demographic with pain. We won’t talk about arthritis now, shall we? 

So, I’m tired and generally not feeling that great. What should I expect? Duh! 

The past month has been especially unpleasant. My computer tells me that I’ve spent about nine hours a day of screen time. That seems about right. I’ve watched a lot of YouTube videos on everything from sailing to boat building, to prospecting, art, art history, lumber manufacturing, bushcraft, the La Palma volcano, people living alone in off-grid cabins, American Congressional politics, and more. Nine hours a day. It’s true that I also read quite a few articles from The Guardian, The Tyee, NPR, the CBC, and lots of internet-based news sources. And I’ve written a bit too. Still, I do a lot of sitting in my recliner, staring at my computer screen. I often think about things I could be doing like drawing, painting, woodwork, etcetera. Sometimes I do these things, generally followed by increased pain in my back and legs. That doesn’t encourage me to do more things. In fact, it actively discourages me from doing things. So, I go back to my recliner for another few hours. This pattern seems to be my fate now. I’m not sure I can do anything about it either.

Today is Sunday and this week is my chemo week. This is the fourth week in my monthly cycle and for the fourth week I don’t take lenalidomide, a drug I would normally take daily. On Thursday I take dexamethasone, valacyclovir, montelukast, and get one and a half hour of a Daratumumab infusion. That’s all no big deal. However, the effects of these meds will leave me feeling like I’ve got the flu for at least a week after. 

Tomorrow, I have to go to the lab for blood tests. So, VIHA has now closed all satellite labs in the Valley leaving only the lab at the hospital. There used to be three satellite labs, one in Cumberland, one in Courtenay, and one at St-Joseph’s hospital. All gone now. Apparently, VIHA can’t find enough staff. There are no appointments to be had either for tomorrow, and I need lab results tomorrow to be able to get my infusion on Thursday. I may spend the better part of the day tomorrow at the hospital waiting to get my blood tested. That will not put a smile on my face. But, we’ll see. I’ll report back on my next post.

Do I sound like I’m complaining and whining? Well, I am.

34 To live and to die.

Yesterday we went to the lab for the nth time so that the tech might gather some of my mucky blood for analysis. My last trip to the lab was fine, but the results were incomplete. Apparently there was a problem with one of the samples that had to be shipped to Victoria so the results weren’t available to us. Samples requiring electrophoresis in their analysis are sent to Victoria. Apparently there have been some issues with the transport of samples. Maybe the samples coagulate on route, maybe they get lost. Who knows. All I know is that the results of these lab tests tell me how I’m doing and can give me confidence in asking the right questions of my oncology team. It’s okay this time because I just got a new set of tests. They’d better come back readable, that’s all I have to say about that. Hear me VIHA? Now, on to more important things.

I wrote this at the end of my blog post entitled Overdiagnosis? I promised to get back to it so here we go.

In my view, my destiny is to die. Like all other living things on this planet, living and dying are the same process and life depends on death for its continuation. No death, no life. I feel that in my very bones! That’s where my oncology team is doing battle with my own body to try to keep me alive a while longer. Of course, eventually whatever the oncology team will do won’t be enough and I’ll die.

So, how exactly does the body shut down as it’s dying? Cancer may very well be one (a very important one) of the mechanisms that is ‘natural’ in its role in having us die. Maybe cancer is not the pathological evil that it’s made out to be. What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? How can we figure that out?…I think science and medicine have a lot to learn about us yet.

So, let me address one question at a time. Our bodies are ephemeral things, programmed to ‘die’, which means programmed to return them to the pool of raw material available to other organisms as they organize matter into various structures, themselves programmed to ‘die’. The body ‘shuts down’ in a number of ways depending on circumstance at the time of death. If you get shot in the heart, the process is quick, but immediately cells ‘know’ what’s going on and act accordingly. When my mother died, the nurse in the care home where she lived explained that staff can tell when a person is close to death by looking at their feet and legs. The weaker the heart gets, the less it can pump blood to the extremities. That means that the feet, then the legs show progressive signs of blood loss, losing colour and tone. Maybe that will happen to me. Whatever the circumstances, our bodies are prepared for the moment of death and ‘know’ what to do. Our minds are another thing. I’ll get back to the mind in my next blog post.

Cancer is as natural a process as muscle building. In my case, the likely culprit in triggering my myeloma is an oncology gene, not a factor exterior to my person like an environmental carcinogen, and my immune system was likely complicit in making sure myeloma spread to all of my bone marrow. My bone marrow, it seems, just got tired of producing marrow and started to produce myeloma protein instead, crowding out the cells that produce hemoglobin and other healthy blood cells. I really don’t think that that is a pathological process. Pathology implies that there’s something wrong with the body breaking down and dying. There isn’t. Dying is as natural to us as being born. The problem is that our big brains have a hard time letting go so they unleash our minds in a futile battle against entropy. Ultimately, they deny death itself. We’ll get back to that next post.

I think it’s reasonable to ask the questions I pose above: What would happen if cancer did not exist? How would we die then? What does it mean to die of natural causes? If cancer and other ‘deadly diseases’ didn’t exist we’d die from other causes. Simple as that. So, if medicine eventually ‘cures’ cancer or heart disease, or stroke, it will just have to move on to do battle with whatever other cause is determined to kill us. Scientific medicine is based on a pathology model so is organized to do battle with disease and death. That means that it assumes that there are normal ways to be a human and pathological ways. The idea is to ‘fix’ the pathological ways to bring the human back to ‘normality’. Unfortunately, there is no way to fix death, although there are a variety of ways of conceiving of death (but that’s the subject of my next blog post.). So what would happen if science gave up on the pathology model? It would have to study what is ‘normal’ human development, and not be fixated on correcting what “goes wrong”. It would have to cease thinking of disease and death as evil. Of course, evolutionary models are gaining in importance and they aren’t pathologically based. Furthermore, I’m sensing glimmers of the recognition of the weaknesses in the pathology model in the medical clinic, but pathology is a strong draw and won’t likely go into abeyance anytime soon as a favourite basic framework for the practice of medicine. I figure that until science and medicine face reality, the suffering sometimes caused by attempts to prolong life will have to be closely scrutinized along with the Hippocratic oath, and we won’t be able to deal with death as a natural part of life. So where does that leave me?

I can tell you that I’m not convinced that chemotherapy is the best course of action for me. Yes, it will likely allow me to live longer, but how long? And in the meantime, I get obsessed by my lab results and Carolyn and I reckon time by where I am in my chemo cycle and how that makes me feel. Not sure that’s such a good thing.