I Really Should Know Better…and Wisteria.

Yes, I really should know better. This is the pattern: I sense a marked improvement in my wellbeing. I start to do things. Maybe I do too much. I injure myself. Now I can’t do much again! Damn!

The problem is that I have myeloma, alright and I’m taking chemo meds, alright, but that doesn’t mean I will be distressed exclusively by cancer related issues. At the moment I’m experiencing pretty severe IT band pain. That means my left side, hip and upper leg are quite painful to the point of preventing me from sleeping. Of course I can take extra hydromorphone to alleviate the pain, but that has its consequences. If I take enough to get to sleep it’s like I have a hangover the next day. That’s not terribly pleasant and I don’t like it.

It’s so tempting, though, to do things! And there are lots of things to do. For instance, even though I shouldn’t be kneeling or getting down on the ground because of the lesions in my femur, I did that anyway while working to fix the irrigation in the garden a few days ago, just one of those things needing to get done. Now my back is chastising me for doing that, and it’s especially gleeful in its chastisements at 3 AM. As I sit here writing this, I can feel the pain slowly increasing in my lower back. I had surgery on my lower back about a hundred years ago, but the scar tissue still causes me pain now and again. Over the years I developed coping strategies to deal with lower back pain, but every once in a while my enthusiasm to get something done interferes with the caution I should be exercising in doing anything physical. I can still do things, but I just have to be smart about it. Unfortunately, sometimes my smarts abandon me and my frontal lobe meekly succumbs to the bullying from my amygdala. Brain wars. This part of my brain says “Yes, do that!” Another part says, “You know better than that!” Which brain part wins is sometimes a toss-up, but more often than not, the do-that part of my brain wins and my lower back sooner or later exacts the price. These days, as I get older and older, the price is exacted sooner than later and lasts way longer than I find reasonable.

I’m just coming to the end of my fifth chemo cycle. Today is a chemo day, but I only take one of the three drugs I normally take earlier in the cycle. So, no dex and no bortezomib. That means no dex high to counteract the cyclophosphamide downer that always happens on chemo day. Bummer. I got to looking forward to my dex days. I got a lot done on my dex days!

Today, I could barely do anything. We went out to the hospital lab this morning to prepare for my visits with doctors next week, then I waited in the car almost falling asleep while Carolyn did some shopping, first at Art Knapps (AK), then at Thrifty’s. I was pretty dozy, but I couldn’t sleep because I kept getting distracted by the parking lot antics of people coming and going from the stores. People coming and going from Art Knapp’s were quite entertaining. Apparently there is a number of people of all ages who shop at AK who can’t read or have attention-deficit issues. The new signage telling people that the former entrance is now an exit-only door flummoxed quite a few shoppers who couldn’t figure out the new rules.

Starbucks at Thrifty’s is still busy it seems. A number of people had coffees in hand as they got back into their cars. I was surprised at how many people came out of the store with only a couple of items in hand. One woman pulled up beside our car in a black twelve cylinder biturbo Mercedes hard top convertible, went into Thrifty’s just to come out a few minutes later with potted flowers, that’s it, just as a classy guy who parked his van across from us (clearly marked with his business name all over it) spit on the pavement every couple of steps he took as he walked towards the store, muttering to himself between spits. So much for shopping only once a week or being super cautious in Covid Times. How could I sleep with all this entertainment going on?

When we got home it was nap time. I slept for two hours. I hope I can sleep tonight after that.

Now, you can feast your eyes on this amazing forty year old wisteria that has a trunk at the front of the deck then snakes around along a structure about 7 feet off the ground for probably 10 metres. It’s beautifully aromatic and frames the table and chairs on the deck.

What better way to finish a blog post. Soon I will post a video of Carolyn’s amazing gardens. There’s no other way to show it off right now, so I’ve polished up my rudimentary video skills and enlisted my basic Sony video camera to put together a 20 minute video. I’m not a great narrator so I’m working on setting it up without talking too much. It’s Carolyn’s birthday on Monday so this video is partly a birthday present for her. Still in love after 47 years. It helps that we’re both a little crazy.

The Unrelenting Presence.

Carolyn and I have just finished reading The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee. The author, an oncologist and Renaissance man, who won a Pulitzer Prize for non-fiction for this work in 2011, masterfully addresses the war on cancer over the past few centuries or so, but with a special focus on more recent events and ‘successes’ relating to specific cancers and new treatments. Cancer, as the books so often argue, is not one disease but lots of different diseases. They all have one thing in common, though: pathological mitosis.

I’m not going to review the book today. I will, though, sometime soon. I’m kind of bummed out right now and not really in the mood to write a long blog post. I took my chemo meds again today. That’s always a fun time, but I’m still confused about just what accounts for how I’m feeling. Sometimes we call these feelings ‘symptoms’ but I don’t like that word much. I’m not sure why. For instance, this afternoon I felt exhausted, and lightheaded, somewhat dizzy too so I went to bed for a nap. As I lay there my body was tingling all over. Is that a feeling or a symptom? If it’s a symptom, is it a symptom of my myeloma, the chemo meds or something else? It’s still tingly, but not as intensively as this afternoon.

I’m bummed, but I should be celebrating, I guess. I had a five minute telehealth conference with my Victoria-based oncologist yesterday morning that’s left me feeling a little empty. For one thing, although he called me by name when we made screen connection (It’s like Skype on steroids), he was not prepared in the slightest for the interview. He asked me how I was doing on a chemo cocktail he had withdrawn me from a few weeks ago. Then he asked me what he could do for me. Well, shit. He then got so focussed on the computer screen he was looking at with my charts all over it that I might as well have not been there. So, I asked him about my lab results. Yes, he said, everything is going very well. The drugs are working. Reason to celebrate, right? Yes, I suppose, but then he says that I had better get used to the shitty quality of life I have because that’s my future. Even if I go into remission. Well, slap me in the back of the head! It wasn’t that long ago that he sat before me and told me I’d regain some good quality of life in remission. Maybe he was having a bad day. Now I was having a bad day too. I felt that this guy needs a talking to about compassion. He rebuffed any attempt I made at personal conversation. He was cold and completely detached. Maybe he was having a bad day but maybe not. Maybe he’s like this most of the time. Then I thought, maybe my expectations are too high. Maybe I should think of him as a consultant, more than as a doctor treating me like my GP would. After all, I see him for five minutes every four months. So, whatever, I’m still bummed out. Distractions like writing, reading, and watching YouTube videos are good for me, but I can’t be distracted a hundred percent of the time. Any break, any crack in my distractions and the dark light of myeloma reminds me in no uncertain terms of my mortality.

Mukherjee is so informative. I learned a lot reading his book. I’m also reading a book on Medieval medicine and even a thousand years ago, ‘doctors’ recognized cancer for the killer that it is, but they looked for the causes in ‘black bile’ and other humours gone bad. Towards the end of his book Mukherjee gets real for me. It’s all fine and dandy to ‘know’ about cancer, to study it, to follow developments in its treatment, but now, cancer has me up close with its unrelenting presence. I leave you with two quotations from Mukherjee’s book. I am these quotations.

“The poet Jason Shinder wrote, “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But what patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

AND…

“Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away.” (from “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee)

Read the book

Enough for now. Maybe I’ll have more gumption tomorrow.

I got to ride in an ambulance!

No sirens or anything, but still. We drove to Victoria (I should say Carolyn drove to Victoria) last Wednesday for an appointment with an oncologist at the Victoria Cancer Clinic. Wednesday went well enough although I’m in severe pain and the stress is overwhelming. Despite my distress we had dinner at the hotel. That was great. The Inn at Laurel Point is a superb hotel and the staff is excellent.

On Thursday morning we got a cab (Carolyn wasn’t particularly interested in driving, parking, etc) to the Cancer Clinic which is right next to the Royal Jubilee Hospital. We waited for a bit then had a good appointment with the oncologist which lasted probably an hour and a bit.

After our appointment we decided to head into town to have lunch and do a little shopping. Big Mistake! Multiple Myeloma is not a forgiving disease and doing regular daily activities can be impossible. I was to find that out in spades. Instead of doing the logical thing and taking a cab back to the hotel I decided a walk would be good. Wrong! A walk is the last thing I needed. I was in severe pain by the time we got to the hotel. I lay down on the bed to see if I could dissipate the pain a bit and that seemed to work until I thought about getting up. Impossible! The pain was over the top, way over the top. Eventually I got out of bed by sliding off the end of it while in a critical state of pain. Well, a normal person might just have decided at that point to call an ambulance and get to the emergency department of the Royal Jubilee. Not me. I’m tougher than that, and way more stupid. So I took a schwack of T3s and went to bed. Hardly slept at all. We were supposed to drive home in the morning but that wasn’t going to happen. We called the oncology nurse and after a bit of discussion she told us to get an ambulance back to the hospital to get an MRI and to deal with the pain. So we called an ambulance and the paramedics came to our hotel room and got me on a gurney, etc., put me in an ambulance and took me to the emergency department. I think that will be the last time I let anyone talk me into going to emergency. I don’t blame the staff, they have their protocols, but the truth is I wasn’t there for a diagnosis. Nonetheless they took some blood (why, who knows) and had me sit in a waiting room with 60 or 70 other people. while I was in severe pain. Well, we were there for several hours. I got no pain meds for hours but finally got a CT scan, when what I needed was an MRI.

In any case, by the time I was in that black hole of an emergency department my pain was at a critical point so the ER doctor got me a hydromorphone drip and a prescription for hydromorphone. We got back into the truck but now had to stay another night because Carolyn can’t really drive after dark. Thankfully the Laurel Point Inn was able to accommodate us. I slept that night fully in the hands of my opioid angel. The hotel has a wheelchair which is good because by now I’m unable to walk because of the pain. In the morning we go downstairs, have some breakfast and then head for home. I knew that by the time I got home I’d be a basket case. More hydromorphone. Slept (I suppose we can call it that) when we got home. Now I sit here awaiting further instructions. I may have to get a wheelchair if I have to go any distance. The oncologist promises pain relief after I start chemo. I’m looking forward to that.

That’s it for today. I’m beat!