@Tilly

Up, up in the air.

~ Roger JG Albert ~ 8 Comments

What do I want to do with this blog? The thought crossed my mind that just giving up on it would not be the worst-case scenario. I’ve been at it for a few years now so it wouldn’t be outrageous for me to either quit entirely or maybe just take a break over the summer. Mygawd, I’m not making any money writing it. Lots of bloggers make money on YouTube with their blogs. I don’t, so what’s the point? Maybe I could monetize my blog, attach it to a video log and turn it loose on YouTube. After all, we DO live in a capitalist society. Might work. Probably not. 

The weather has been wonderful lately if you want to lay about on a deck. I sit on the deck close to the rock/fountain and watch the birds come down for a drink. The one in the video here is a female goldfinch we think. She flits around avoiding direct contact with the fountain. It would probably knock her over if she did. 

The wisteria gives them some shelter and protection before they come down to the fountain, but they’re still wary. Smart birds. There are cats prowlin’ around here. Our princess is one of them and she’s a hunter sometimes, mostly mice, but we don’t want to tempt her with birds. She’s being such a brat lately. She seems to have figured out exactly when I’m just about to fall asleep, then she pounces on the bed, meowling like crazy and poking my face with her paw. 

Tilly has been hanging around the pond a lot lately. She patrols the perimeter sniffing around trying to get frogs to abandon their rocks along the shore. I don’t like the way she’s been fixated on frogs lately. She come close but she hasn’t caught any yet. I’d be very pissed off if she did. She spends most of her time under the deck these days where it’s cool. She’s got such a thick black coat she must really suffer in this heat, but she never complains.

Got a call from my Oncology GP this morning. He noted that my bloodwork is coming back from the lab within reference ranges (normal). Tomorrow I go to the hospital for another infusion of Daratumumab. After that, I don’t get another one until the end of August. As of this month, I’m down to once a month for the Dara. I keep taking my regular chemo meds, lenalidomide and dexamethasone, three weeks on, one week off. So, I’m in a weird space where I have no myeloma detectable in my blood, but I’ll be on chemo for the foreseeable future, that is, until the drugs don’t work anymore. At that point they’ll put me on another regime. That means that I must be vigilant around the side-effects of the chemo. It’s not always easy to tell chemo med side-effects from pain med side-effects. 

For an old man, I’m feeling pretty good these days for about fifty percent of the time. I’m sleeping moderately well most of the time, but I have wakeful nights periodically. My neck is what’s tormenting me the most these days. According to my Oncology GP I have OAD (Old Age Disease). I can’t turn my neck more than 3% left or right. Maybe 4%. Makes it hard to do shoulder checks when I’m driving. Of course, I still drive. What are you thinking? I just have to turn my whole body when I do a shoulder check. That’s fine.

Technically, I have degenerative disc syndrome and it’s common among older people. I’m getting a CT scan early next month to confirm the diagnosis. Once I get the scan, I can ask my GP for a referral to someone who might be able to do something for me. That would be good. If I do get some relief, I’ll be able to do more writing, and maybe some sculpting. I’d love to do a bit of printmaking too. Or maybe I could just lie on the couch more comfortably. That would be good.

#77 I Carry On.

~ Roger JG Albert ~ 6 Comments

#77 Mid-February. Snow blankets the property but thankfully it didn’t fall when I was scheduled for chemotherapy at the hospital. It looks like it is respecting my hospital schedule of appointments. My next appointment for chemo is on the 18th, Thursday. I was successful with my first dose of chemo drugs last week, but there was a glitch in my chemo dates. I developed a fever on February 2nd in the afternoon. My temperature reached 39˚C on the 3rd. One thing we are told over and over again as myeloma patients is to go to the hospital if you develop a fever at all. So, off to the hospital I went. I ended up in the Emergency department for a day or so before they wheeled me up to D3, a ward on the third floor of the hospital. Thankfully I wasn’t there long. My docs tried to figure out what caused the fever, but they weren’t successful. They pumped me full of antibiotics in case of sepsis, a very reasonable thing to do. I developed some cellulitis in my right ankle, but that did not prove to be the source of infection. It may be that the fever was a product of a random myeloma issue. One thing is certain. I do not want to repeat that hospital experience. 

What the Emergency Department interlude produced was a delay in the start of my second round of chemo. Turns out I started with the first full day of infusion on February 11th followed by a slightly shorter day on the 12th. I was supposed to start this course of therapy on February 3rd. 

I’m not sure what to think at the moment. My first dose of daratumumab infused was successful. I had only a slight reaction to it. That’s really good. I hope the rest of the daratumumab infusions go as well. If they do, after having weekly sessions for a couple of months, then bi-weekly ones, I end up with infusions once a month for as long as this cocktail of daratumumab, lenalinomide and dexamethasone works. I’m hoping for a long respite from active myeloma. Of course, as I’ve often repeated, myeloma is incurable, but it is treatable. Given all the challenges I face, I’m determined to make my 80th birthday, that’s six years from now. 

For the time being, my hospital visits for daratumumab infusions regulate my life. It’s really not so bad. The nurses in the Cancer Care facility at the hospital are great and make me as comfortable as possible for my infusions. One thing that may throw a wrench in the works is the very likely possibility that I will need radiation therapy on my jaw. I will have to travel to Victoria for that. I consult on the phone with a radiation oncologist tomorrow morning. I’m not sure what we can accomplish on the phone, but it’s a start. The pain in my jaw is pretty insistent. 

My family is my salvation. Carolyn is amazing and makes sure I get my meds when I need them. I take quite a cabinet full of meds twice a day. I’m hoping to modify the number of drugs I’m taking. I may be taking too much in the way of pain management. The effect of my pain meds is dizziness. In the mornings I can predict exactly when the dizziness will come on. It doesn’t bother me in the afternoon because meds have worn off by then. 

Throughout all of my myeloma life I try to keep a real connection with the action around me on the property. We’re getting a number of birds at the feeders. The jays are right into the suet and now we’ve got some woodpeckers, varied thrushes, and towhees coming to the feeder. Some flickers join the other birds competing for the suet. The smaller birds like the finches, pine siskins, goldfinches, and nut hatches focus on the black sunflower seeds and nyger seed in the feeders themselves. It’s sunny today and the snow is melting. Tilly, our Bernese/Shepherd cross loves this weather and makes nests in the snow on the deck. 

She spends way more time outside now than inside. She is a sweetie although I wish she wouldn’t bark quite as much as she does.

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.