56 Confessions (and the weather)

~ Roger JG Albert

The weather has been so unpredictable lately. The meteorologists at the Weather Office must be gnawing their fingernails off. It’s been great for the garden overall except now it would be good to have more heat and sun to ripen the berries. We’re eating a lot from the garden now. Cucumbers, lettuce (so much lettuce), tomatoes, zucchini, broccoli, cauliflower, kohlrabi, and lots more. I fell kind of bad that we can’t support the farmer’s markets, but no. We can’t do that. Of course the farmer’s markets have way more than just veggies and fruit, but then there are other reasons I don’t go to places where people gather, at least not regularly and not willingly.

We sat on the porch today looking over the front of the property and off toward the village. The clouds came through at different elevations, the higher ones travelling west to east and the lower ones southeast to northwest. It was sunny at intervals. It rained a bit. It was around 20˚C most of the day. Not at all unpleasant. Tilly was her usual goofy self entertaining us with her antics on the patio. She really is a laugh a minute, that is, when she’s not biting us. Sometimes she just wanders over and sits at the top of the driveway surveying the yard below. I’d love to know what kind of puppy thoughts are going through her head.

As usual for a Thursday I took my chemo oral drugs on the early morning then went to the hospital for my Bortezomib shot at 10:30. When I went in, there was just a short wait for the lab (not that I was going there), but when I came out, there was a lineup outside going almost around the building, probably thirty people, some in wheelchairs, some with walkers waiting for clearance to even step into the hospital. Some were going to the lab (for a long wait) but others were going for imaging or to the Bone people, or wherever. You stand in line whether you have an appointment or not.

Everybody gets the standard Covid-19 song and dance: Have you travelled out of the country in the last 14 days? Have you been in proximity of someone who has tested positive for Covid-19? Do you have a fever, cough? Etcetera? I usually stack up the nos at the very beginning of the process and that usually works but not today. Today I got the full meal deal. Everybody was getting it. No wonder the lineup is so long. Of course it has to be done. I’m really not complaining. The Covid-19 protocols these days appear to be just as unpredictable as the weather. Oh well, we carry on.

Just as unpredictable as the weather is how my body is going to react to my chemo drugs. It’s been a nasty ride lately with Bortezomib creating havoc with my nervous system, making my skin on my legs and torso very sensitive to painful to the touch. Added to the pain is a weakness in my legs that is now making it very difficult to move in ways I always previously took for granted, like tying my shoes or picking something off the floor. That’s very distressing. I must confess that I’ve had moments when I have felt pretty sorry for myself. Fuck cancer!

Now I’m on a very low dose of amitriptyline, a drug that was developed for depression (at 100 mg/dose) but was also discovered to help with pain at a dose of 10mg, the dose that I’m on. It has side effects, like they all do. Pile side effects on top of side effects. What drug is doing what is anybody’s guess. The pain in my legs and back is so distracting, and along with the usual dizziness I experience all the time, I get a pretty constant brain fog. I can still put together a coherent thought, but I have some difficulty communicating those thoughts sometimes. Not always. My brain is like the weather right now. Some coherent thinking. Some stoned time. Some sleepiness. Not always in the right order. Unpredictable is what it is.

The fact that I can even write this is due to some momentary clarity induced by another of my drugs, dexamethasone. It won’t last long, so I had better hurry and get this done. I’m really wondering right now about this whole business of oncology. Like, how is it that a drug can be approved to treat a condition, in my case, cancer, yet produce side effects that are debilitating, potentially for the long term? What’s the goal here?

It’s pretty obvious after reading The Emperor of all Maladies by Siddhartha Mukherjee (2010) (a book review here), that the objective of oncology, both clinical and research is to prolong life. Many people have died because of the effects of chemotherapy. As far as drug trials go the Golden Chalice is survivability. If they get 5 months more survivability with a drug that’s considered a successful trial. Since Mukherjee wrote his book, lots of progress has been made and lots of animals have been sacrificed to the cause, but they still can’t engineer Bortezomib to do good work and to avoid beating the crap out patients just in order to keep them alive. Of course, the instinct of self-preservation is strong in most of us to the point where we are more often than not willing to sacrifice a lot just to get more life out of the deal.

My chemotherapy is really working well as far as the myeloma is concerned, but at what cost? It’s a straightforward cost/benefit analysis and I’m working on that right now. I have a strong will to live, and I’ve seen people in a lot worse shape than I’m on stick it out and squeeze the last bit of life out of their decaying bodies that they can. So far I guess my actions have betrayed my values as is the case for most of us most of the time. More on this in my next post.

9 thoughts on “56 Confessions (and the weather)”

  2. Martin is an amitriptyline for anxiety and it works wonders for him… but he did gain 10 pounds which astonished him. Lol. I have been on it too for a migraine preventative it made me groggy, stupid and didn’t do a damn thing for me. Ah well. Oh and I gained weight too. Always a bonus.

    I also say fuck cancer. Mom had a lot of issues with her meds. Skin pain. Bone pain. Nerve pain… that stuck around. The treatment is brutal. I am glad Martin just had to have surgery for his.

    It is difficult when things affect our ability to think… I know I loathe that. I wish it was better for you. I wish it was a cure. I wish it was temporary and then you’d feel fine. ❤

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    1. Hi Nikki. It’s interesting about amitriptyline. It works for some people and not for others. I guess the dosage is critical. They’ve got me on a really low dose of 10mg/day. That dose is supposed to help with neurological pain. I’ve been on it a week and will give it another week at least to determine whether or not it’s helping. I haven’t felt any effect yet that I can tell. Today I’ve taken ten mgs of hydromorphone and could probably take another ten, but then all I’m good for is sleep.
      I had the same surgery as Martin in 2002. Kidney cell cancer is a whole different thing than multiple myeloma. Myeloma is incurable but highly treatable, much like AIDS in that way. Some of the same drugs used to treat AIDS are also used to treat myeloma.
      It’s been a rough ride lately. I’m hoping for better times this winter after I finish this round of chemo. We’ll see.
      All the best to you and Martin.
      Roger

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  3. I am so glad it is treatable… if not curable. Although that does mean a lot of sucky meds. Martin does love that med… and the weight gain is barely noticeable on his lean frame anyway. He is on a low dose as well. As was I… low doses for migraine always. I really d hope it helps you. I know of some others used for the same thing though so maybe they will give them a go if it doesn’t. Sort of like the ones they try for FM… like Lyrica maybe?

    ❤ Love you and hope treatment eases things

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    1. I was on both Lyrica and Gabapentin years ago for depression. Both of them just made me suicidal. It’s a bit of a wonder that I’m still alive today. A good thing is that I had a fierce love of life too. The cognitive dissonance was hard to take at times with my amygdala doing battle with my hypothalamus. I don’t know if you are familiar with Robert Sapolsky’s work. He has several videos on YouTube of his Stanford lectures. He’s a neuroscientist with a strong interest in stress. I used to use his material in my classes. My students loved his work and his hour long lectures may have been much more entertaining than mine!
      I’m hoping that amitriptyline does the job. I’m up to 20 mg and in 5 days will up that to 30 msg if I don’t feel any difference in my pain levels. Today is my dex day so very reduced neuropathic pain. I’m happy about that, but dex has its issues too. It’s a glucocorticoid. Sapolsky talks a lot about glucocorticoids in his books Why Zebras don’t get ulcers and Behave

      I’ve been reading a lot about migraines lately, grateful that I don’t get them. I feel for you and what they do to you. Most unpleasant.

      I have a friend, Matt Rader, who has chronic pain issues and life-threatening allergies to lots of different things. He almost died last year from an allergic reaction he didn’t know he had to cider. He’s a poet and teaches at UBC Okanagan. He wrote a book called Visual Inspection in which he addresses his illnesses. On page 99 he writes about the invisibility of pain. People don’t see our pain. We don’t always look ill. Carolyn sometimes remarks on how pale I’m looking but most other people I look just fine. I usually retort that looks can be deceiving or don’t judge a book by its cover. I get funny looks. Cancer is something most people can’t relate to at all except that they often know someone who has IT or has died from IT and that they don’t ever want to get IT. And they say that they’ve fully recovered! You will too! Just keep a positive attitude! Yeah, sure. Whatever.

      Anyway, enough for now. Love you. Take care.

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      1. Lyrica just made me fat. Yay. But ironically antidepressants make me suicidal, which is why I am on something else for depression. I had 2 suicide attempts because of meds like that so Now I can’t be one them.

        Migraines are a particular kind of madness for sure. Something about the pain in the head and how it affects the senses. Never found FM pain nearly as bad. But in the end, with chronic pain we all go through the same mental and emotional process.

        I write about how the invisible nature of pain affects us and others sometimes. It can drive me crazy sometimes. We learn to mask it so well but then it just becomes more invisible. I would rather just deal with it than mention it all the time though… it is just easier.

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      2. I have to monitor myself very closely for any signs of depression and suicidal thoughts. At the moment, I do get sad on occasion and the pain is a constant downer, but I’m not depressed. I’m concerned about amitriptyline, even at a low dose. I’m hoping that 20 or 30 mgs a day will be enough to mitigate the neuropathic pain in my back and legs. For me that would be the ideal outcome. Unfortunately, I’ve had to step down from chairing our local museum board because I can’t be sure if on any day my brain will be mush or not and it’s difficult to chair a meeting with mush for brains. Today my brain is sort of okay but I’m also very sleepy even after sleeping ten hours last night. Time for a nap!

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      3. I get that. Actually amitriptyline made me rather groggy all the time and I already am fatigued all the time… wasn’t a good combo for me. But hard to tell when it is a side effect or a symptom or both. I really do hope that it helps with your neuropathic pain though.
        I also monitor myself very well for depression and suicidal thoughts now… because I am so sensitive to some medications it is such a risk factor. Not to mention the pain itself causes fluctuations in mood but I manage that pretty well now.

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      4. I’m now on a very low dose of amitriptyline but am taking more dexamethasone. Well, actually, I’m taking less dex but instead of 20 mgs once a week, I’m taking 1 mg every day. I’m off of chemo for the moment. The myeloma will come back of course, but who knows, they may be close to a cure these days. Chemo is really like a hammer when a screwdriver would be a more appropriate tool, but it has got me this far. Maybe I’ll get a few more years out of this old body.
        All the best to you, Nikki.

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