bortezomib

62 Meh…and sporangia.

~ Roger JG Albert ~ 4 Comments

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.

56 Confessions (and the weather)

~ Roger JG Albert ~ 9 Comments

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.

55 Two sickos, a baby and a garden.

~ Roger JG Albert

Carolyn has her hands full these days, does she ever. I’m experiencing some particularly nasty side effects of one of my chemo meds weakening my legs to the point of near collapse, and last week we found Princess, our cat, in severe distress requiring long stays at the vets and heroic efforts to save her life. On top of that, there’s the puppy we brought into our lives. She’s a wonderful addition to the family, but she’s a rambunctious puppy, demanding of attention and needing some training to stop her from biting us incessantly, ripping our clothes and our bodies. Then there’s the garden.

The Garden

Speaking of the garden. It’s unbelievable this year. We’ve been eating lettuce from the garden for weeks but now the peas are coming on strong and the broccoli, cauliflower, and kohlrabi are in the pot. Some of the raspberries are ready to pick, the tomatoes are coming on as well as the zucchini and cucumbers. We’ve never had much luck with root vegetables, but this year it looks like the potatoes, carrots and beets will produce lots of tasty treats. The garlic is a bit behind this year but should be ready to pick in a week or so.

The cedar trees are loaded with cones this year to the point where they’re dragging the branches down. My favourite flowers, the lilies, are opening everywhere on the garden and this year we have a rare pond iris bloom. Such a delightful show! The birds are active too and the squirrels are busy picking the not-yet-ripe cherries. Looking out the living room window right now I’m seeing an American goldfinch, a purple finch, a couple of woodpeckers going after the suet attached to the feeder and a congeries of species, mostly thrushes, towhees, chickadees, and finches. At the pond is where we more often see kinglets and warblers. Of course, hummingbirds dash about in their usual frenzy all over the garden. So much to eat these days for all the birds.

Cedar cones, lilies busting out, miniature mock orange, pond iris, and brassicas.

Me

It’s been tough lately. I’m in quite a bit of neuropathic pain from one of my chemo drugs, something I’ve already written about a couple of posts back. My legs want to give out on me and if I should ever get down on the ground, I can’t get back up on my own. It’s downright discouraging. One of the main problems with this is finding the right pain med to deal with it. Hydromorphone is ineffective against neuropathic pain although I’m always tempted to take it so that I get stoned enough to be able to sleep. But I don’t like that strategy so I’m looking to other ways of getting by. I’m cutting back on my hydromorphone and taking more acetaminophen. That seems to allow me to sleep better while avoiding some of the worse brain fog and intense fatigue that I get from the opiates.

It may be that some of the back and leg pain I’m feeling is from conditions other than those produced by myeloma or chemo. To see if there’s a mechanical issue, my local oncology GP has ordered an MRI to check things out. He also suggested I think about taking Gabapentin or Lyrica, but I’m not having anything to do with those drugs. They may help in some ways, but they can create lots of problems I don’t need. I’m talking to the palliative care people too and they may have suggestions. In the meantime we wait and hope the pain attenuates. I’m operating at a very reduced capacity at the moment. Must carry on, though. No point in quitting now.

Thank goodness I have Carolyn and the garden for solace.

Princess Pretty Paws

Princess is at least ten years old and has been very healthy since we got her two or three years ago. Last week we got the puppy and Princess disappeared. At first I thought there might be a connection, but Princess is not the kind of cat to run away. In any case, Carolyn found her upstairs a few days ago. She was obviously in distress. We think that she may have been hiding out in the crawlspace as she got sicker and sicker. So Carolyn immediately took her to the vet. Princess stayed there a few hours for observation and tests. The vet was at a loss to figure out what was wrong with her. The one real anomaly in her blood was a high bilirubin count indicating a liver problem. We thought it might be poisoning, but that wasn’t the case.

It turns out she has a serious problem with a bowel infection or something along those lines and she has inflamed organs. So what to do? Well, some people might have decided to put her down but that’s not our style. More tests and more again. She saw the vet three days last week as well as today, on Sunday. We have a great vet!

Princess has been on a feeding tube for three days now and we seem to have that under control. She’s on lots of meds that we give her at feeding time. Her fever has dropped, she’s eating (through the tube) and she’s getting more active. She’s not throwing up and she’s using the litter box. All good signs. So we carry on and see how it goes. We keep our fingers crossed. No point in giving up on her now!

Matilda (Tilly)

Matilda (Tilly)

Tilly is a Bernese Mountain Dog, Shepherd and Maremma Italian sheep dog cross. She’s nine weeks old and is a gift from our amazing daughters and their families. She has a great personality but like most puppies of that age is teething and biting is something she does indiscriminately. She plays rough. She bites whatever comes along: cardboard boxes, chewy toys, table legs, blankets, and us, of course. Carolyn’s arms are scratched up quite badly as you might expect. Mine are less so. We’ve found some puppy social classes for her and with some training she’ll be just fine. She’ll grow into a wonderful, mellow girl. For the moment though, she is a handful. There’s no turning our backs on her for a second. She’s very fond of the fountain next to the deck and lays on the rock taking a nip at the fountain from time to time. She’s figured out how to get under the deck and she goes from one end of it to the other under there. She figures that’s a real hoot. She loves her treats and is now responding readily to the sit command but she might just ignore that if she she wants to play, meaning attack and bite us. To be fair, she can be gentle too and plays by herself quite well. She’s not always bitey.

We’ll have to be very vigilant when Princess starts wandering around the house and property. We don’t want Tilly chasing her. It will be a challenge.

So there’s sorrow in the household at the moment but there’s a lot of joy and hope too. Be careful out there in the Time of Covid-19!