Month: January 2021

I’m refractory!

~ Roger JG Albert ~ 6 Comments

That means that, regrettably, I’m no longer in remission. Myeloma is back doing its destructive thing in my bones. Well, technically, myeloma never went away and as my local oncologist often repeats myeloma is incurable but treatable. As he says, we can beat it down but we can’t beat it to death.

I really wish I had more psychic energy to put together these posts. Right now it’s very difficult partly because I have low physical energy levels but I also have to deal with the reality of being 74 years old with a cancer that won’t go away and that takes up a fair bit of brain space.

So, next week I’m back on chemotherapy. This course of therapy is very different from the first course I went through last year. The very first primary chemo drug I was on is called lenalinomide. I was on it for less than a month before I broke out in a nasty rash around my midsection. At that point my oncologist pulled the plug on it and put me on another med called Bortezomib. I was on it for 7 months or so before I ended it. I was supposed to be on it for 9 months but after 7 months I was in such pain and had such loss of mobility that I felt I had no choice but to stop the therapy. It took a few weeks for the symptoms to partially dissipate, but I felt a lot better soon enough. I always wondered though, in the back of my mind. when the myeloma was going to reactivate because I knew that it would. Now we know.

I start chemo on Feb. 3rd. I’ll be on an IV for most of the day. I’ll return the next day for a repeat performance, then once a week after that. The main med star for this course of therapy is Daratumumab. It’s a very different drug than I’ve previously been on and we’re very hopeful that it will perform well. In addition to the Dara, I’ll be getting a very low dose of lenalinomide. Although it gave me a huge rash the first time around my oncologist decided to give it another try starting at a very low dose. They’ll also closely monitor any allergic reaction I have to the lenalinomide. I’ll also get a regular dose of dexamethasone, which is a corticosteroid. It produces some strange effects, but I’m accustomed to them and I’m sure I’ll get along well with dex.

Along with my regular chemo meds I’ll be taking an assortment of other drugs to help with allergic reactions and to help prevent blood clotting.

One complication I’m now facing for the first time is the possibility that I’ll need radiation treatment on my jaw. Myeloma is a disease of the bones. I have some fairly large lesions in my femurs. They’ve been well monitored. Now, however, over the past while I’ve been getting some very strange feelings in my lower left jaw. I’m losing feeling in it and if I touch it in the wrong (right?) place, I get an electrified stabbing pain. I have a phone interview with a radiation oncologist on February 17th. I’m not sure what she can determine over the phone, but we’ll see.

One thing for certain is the fact that I’ll be spending a lot of time at the hospital over the next six months. After that things will slow down and I’ll have to go into the hospital only once a month for as long as this course of meds works.

African violet

Now, look at this African violet. She is a wonder! I never expected her to bloom as long as she has. She actually put out more petals over the past few weeks. What an inspiration she is!

#75. A Triple Whammy of Crap (and maybe a bit of good stuff too).

~ Roger JG Albert ~ 2 Comments

It’s been tough keeping my shit together over the past few weeks. I’m having trouble just sitting here composing this on my computer. Part of my problem is physical and part is a growing psychological ennui. I’m exhausted most of the time. Oh, I can get up and walk around a bit but sometimes that’s even too much.

Obviously myeloma has a lot to do with my unease even though I’m in remission, or I think I’m still in remission. I have a chat with my oncologist on the 22nd to confirm my status. It’s hard to know what to think anymore. My usual myeloma symptoms, peripheral neuropathy, itchiness, fatigue and weakness in my legs, are still evident, but now, I have something new to report to him.

I saw a dental specialist on December 21st. After I came to see him because of pain in my jaw, my regular dentist suggested I would probably need to have a tooth pulled and a cyst at the base of it cleaned out. Well, it turns out that the specialist I saw in Parksville figures that the pain and numbness in my jaw is not dentally related. It’s more likely myeloma induced and that the ‘cyst’ is more likely a lytic lesion. I’m still waiting for a call from him letting me know what the situation is. He has a connection with the BC Cancer Agency in Victoria so I expect he has better access than most of us to oncologists. I expect he’ll suggest radiation treatment, something we discussed on our December 21 consult, but my oncologist will decide on therapies.

Right now, I’m on a rollercoaster of symptoms and I can’t predict one day to the next how I’ll be or how much extra hydromorphone I’ll need to take to deal with the pain. My jaw is sucking up the hydromorphone, that’s for sure, but so is my back and a recurring, baffling pain in my left heel that forced me into a wheelchair at one point late last year. I can’t tell you how sick and tired I am of the pain. It leaves me physically and psychologically drained. Thank goodness I usually sleep quite well and Carolyn is envious of my ability to nap at a moment’s notice.

The title of this post is A Triple Whammy of Crap. Well, I’ve written about the pain and distress brought on by myeloma and its treatments. Myeloma and its related poop is the first part of my triple whammy. Now it’s time to move on to the other two elements of the triple whammy. First, a definition:

Triple Whammy

An online dictionary of idioms describes a triple whammy as “a combination of three different elements, circumstances, or actions that results in a particularly powerful force, outcome, or effect.”

I’ve already alluded to one element of my triple whammy, the myeloma and its treatments I deal with daily. The other two are the pandemic and American politics. So, myeloma, the pandemic (and associated restrictions) and American politics together contribute to generating in me a profound funk. With crap falling on us from all sides it’s hard to keep the smell of shit at bay.

The Pandemic

These days, we all have some sense of what it was like to live in 1918. The Spanish Flu was a powerful killer and didn’t discriminate except that wealthy people were better able to protect themselves from crowds than the poor could. That’s still the truth in 2021. The coronavirus COV-2 is adept at making many of us in the population very sick and puts a lot of pressure on the medical system as it forces hospitalizations.

One way the government and chief provincial medical officer in British Columbia have decided to combat COV-2 is by keeping us apart from each other so as to prevent the spread of the virus. Isolation is hardly ever good for a social species like us. There is a lot of evidence for what happens to people who are forced into isolation like solitary confinement in prison. They go wingy after a while. Children forced into isolation, say in an orphanage, die at much higher rate than children born and raised in poverty or in prison with their mothers.

So, in order to relieve the stress of isolation, people here find all kinds of ways of bending the rules, traveling to nearby destinations, or just getting on a plane to a warm destination because the government hasn’t outright banned travel, now has it? It just strongly recommends against it. Many politicians have decided to travel in any case, arguing that they haven’t broken any rules in doing so. Outraged commentators on social media have found all kinds of reasons to criticize them including their flouting of moral standards. Whatever.

I guess the bottom line here is that we are asked to wear masks and to keeping a physical distance from others whenever we step out of our homes. No hugs. For us that means no contact with our children and grandchildren. That sucks! We will follow the guidelines as we go along, but that doesn’t mean we’re happy about it.

American Politics

So, why would I include American politics as the last element in my triple whammy of crap? What the hell has American politics got to do with us? With me?

Well, apart from the fact that I have friends and relatives living in the United States and who have to live with the lies, the betrayals and the crap everyday, the profound disfunction of the American political system creates uncertainty for us, for all of us. The moral degeneracy in the US so easily spreads to the rest of us, especially those of us living close to the 49th parallel, and is impossible to avoid. The disrespect for democracy and the ready acceptance of oligarchy evident in the US could spread to us like a virus and infect our own fragile political systems.

Besides, the uncertainty is stressful as is the insanity. We get up in the morning not knowing what the hell Trump or his cronies in the Republican Divided Party are likely to conjure up and take up as a tool to wreck confidence in the American voting system or in any drive to greater social equality. I can tell you that I’ve had my critical judgments around the American voting system and the Electoral College in particular. That said, destroying the ship plank by plank as it sails off into the sunset may not be the best strategy for reform especially for everyone aboard.

Done.

Any one of the three elements of the triple whammy I outline above can cause inordinate stress (and does!) but the three of them together leaves a trail of discomfort and uncertainty multiplied threefold. We’ll carry on, but it’s not easy. Thankfully there are countervailing forces to help balance things out a bit.

A nap in the afternoon for one. An African violet blooming its little heart out in December and January for another.

I’ll be backing off writing here for a time. I’m not sure for how long. I’ve got to get a sense of balance back into my life (if I ever can). The truth is I’m 74 years old and sick with myeloma. Many days all I want to do is sleep.

Many people tell me that the power to heal is within me. I just need to harness it, to think positively, and to ignore negative influences in my life. At 74, that’s easier said than done. It’s usually younger, healthier people who urge me to get my power pack in motion. Of course, nobody messes with death, positive thinking or not.