If you know anybody with prostate cancer, and who doesn’t, please direct their attention to this post on my website. They need to talk to their oncologist.
On July 4, 2024 I was given a CAT scan. You can see the results below. It indicates multiple compression fractures of my vertebrate and degeneration of my spinal discs.
The nice square or rectangular vertebrate are normal. The ones that are triangular or otherwise distorted have compression fractures. This is a very clear image, and the damage to my bones and discs is very easy to see. I am no longer able to sit upright, or stand, for more than about twenty minutes before my chest collapses into my belly and I can’t breath. So I spend my days on a recliner chair watching TV. For a man who was formerly very active and loved making music or making projects in my workshop, this has made my life very thin and removed much of life’s pleasure.
When I was diagnosed with prostate cancer, the first defensive treatment was to cut off my testosterone and to give me daily doses of a drug called apalutamide (trade marked Erleada) which blocks the uptake of any testosterone my body produces. This has been a fabulously effective treatment for my cancer. My monthly blood tests show that my PSA (Prostate Specific Antigen) level, which indicates the activity of the prostate cancer, is down to a negligible level around .03. This means that the cancer is under control. In the words of my oncologist, prostate cancer is no longer a fatal disease, but a chronic disease. It’s treatable and a man with prostate cancer can expect to live for decades.
Unfortunately, that’s not the whole story. There’s more to life than just living. Testosterone is a very important hormone with an affect on everything from mood, vitality, libido, and, perhaps most importantly, bone health. The lack of testosterone has caused deterioration of my spine and the compression fractures you see in this CAT scan.
Last week I was given an injection of a drug called denosubmab. It protects the bones from the problems caused by a lack of testosterone. If it had been given to me before my spine started to fall apart, it’s likely that I wouldn’t be in the shape I’m now in.
I’m not telling you all this because I want sympathy, nor because I’m angry that the testosterone was not treated before my spine fell apart. I’ve had a great run, a better life than anybody has a right to expect. But maybe warning other of a way to avoid my fate is my last chance to do something useful. I hope so.
A couple of days ago Danny, my American friend and regular Xiang Qi opponent still living in China, told me that five years have past since I told him I had something less than a year to live because my prostate cancer has metastasized and found sublets in my lymph glands and bones. I guess I over reacted. But that’s what Dr. Google said was my future. I’m a little embarrassed to be still alive, but I suppose I can live with that. Everybody else seems to be happy that I’m still around.
Now that’s a terrifying picture, is it not?
Here again is the picture of my scan showing the metastasizes in my lymph glands and pelvis. I’m now expecting to last to my eighty-first year, but I don’t think I want to go much further. If indeed that far. Every time I go under the knife now, I secretly hope that something will mess up with the anesthetic and I won’t wake up. One of the problems I’m finding is that MAID (Medical Assistance in Dying) requires a decision and a delay. That’s the real horror of slipping closer to that drain.
Paraphrasing here. As Stanly Motts, the producer character in Wag the Dog, said sadly,: Just as you are starting to understand how to make a movie and how the industry works they lower the curtain on your career.
I am a movie director, damn it. Specifically a low budget movie director. Give me Bowfinger’s budget and I will give you a movie. That’s what I have done during my long career. Obviously not as much as I wish I had done, but that’s it. I put the money on the screen.
Anybody can make a big budget movie. That’s a snap. That’s easy. It’s making a movie with no money that’s the trick.
I don’t know how I became a low budget movie director. It’s a lot more fun to hose the screen with millions of dollars from people who don’t know dick about making movies, but to be a director I respect you’ve got to be Bowfinger.
Something I heard through my entire directing career went like this: He’s never made a big budget picture. Do you think he can handle this much money? Handle it? Fuck, I’ll roll in the dirt with it and deliver far more than anybody has any right to expect, dance with whatever devil I have to dance with, and put the money on the screen.
I came into directing up the rat lines. I came into directing after serving an apprenticeship as a writer, soundman, editor’s assistant, sound editor, editor, cameraman, production manager, and… fucking creator. A creator. The author of the picture, whatever the picture might happen to be.
Most people have no idea what a director is, or what he does. Take them on a film set and they might think the assistant director, the AD, the guy giving directions, is the director. Not even close. Peter Coyote was not the director, micro-managing the scene with impossible instructions to performers. Not even close. Or the guy telling the actor to pick up the salt shaker on such and such a line. The guy, now as frequently the woman, giving directions. Isn’t that person the director? Not even close.
The only real depiction of a real director I ever saw was Peter O’Toole in “The Stuntman”. The guy desperately trying to find his movie amid the clatter and noise on set, and in his head. Now, that was a director. That was Francis Copolla trying to find it, to figure it out while he went way over budget in the Philippine jungle with the suits back in the studio screaming at him and throwing scripts at the wall. A guy, increasingly a woman, who can see the big picture, who is so close to the big picture he can almost taste it while the chitchats climb on his ceiling and fall into his tea cups.
And who was it on set when the suit’s representative came to tell him that he was twenty pages behind or fifty pages behind who tore that number of pages out of his script and threw them in the trashcan, announcing, “There. Now I’m on budget.” Money? Fuck your money. I’m making a movie.
I was hired by Canal to get “Wiseguy” under control after the prima donna director of the pilot went so far over budget that they couldn’t do turn around. Zale, Alex Beaton said to me, you are going to bring in the same quality without going a penny over budget or a minute into overtime. And I said, “Sure, Alex. Whatever you say.”
We were shooting outside St. Paul’s hospital on Thurlow Street when a grip went charging past me, a hundred pounds of cable on his shoulder. I gave him an encouraging slap on the back and the sweat sprayed off his t-shirt. I watched him run with it. Run with it, not saunter along. The guy was charging. For me. Because I told him what I expected of the crew and they were all set on delivering.
I think Rob Young was the soundman. Or maybe it was Larry Sutton. No matter. I asked him, “Larry, this is not a slacking crew. This crew is humping it. So what the hell went wrong with the pilot?”
“They set up the camera three times and lit the set four times before they shot an inch of film,” Larry said, almost apologetically.
Well, you can’t do that on episodic television. Not unless you are the precious prima donna director in a sinecure of a position. Then you can do it. Then the studio will eat the overtime and you can keep working while you piss millions down the drain. But that’s not me. I come in on schedule and on budget.
Larry, or was it Rob, explained it to me while he quietly moved my coffee in the styrofoam cup away from his Nagra IV. (Yes, they were still recording on Nagra IV’s in those days.) I said the camera goes here on a fifty, and if I didn’t like the shot we’d shoot it anyway and I’d have to eat it in the editing room. I set a pace. We got the shot and we moved on.
I had a standard speech at the beginning of a shoot specifically for the script assistant. It went like this: Don’t talk to me about axis. I’m not going to discuss axis on my set. If you think I’ve got the axis wrong and the shots won’t cut together, you just make a note in your notes and we shoot the shot. If I’ve got the axis wrong, if we’re crossing the line and you think it will be a problem in the editing room, make a note on the script and keep it to yourself. I’m the director. I’m never wrong about the camera axis. But if you open up a discussion about eye lines or camera axis then the DOP is going to chime in with an opinion, and then the actors will have an opinion, and pretty soon I’ve got twenty minutes of my day and more down the rabbit hole of eye lines and camera axis, while not one of my crew members has ever cut one of my pictures. So they have no right to an opinion of camera axis. It’s my job as the director to choose the shots, cover the scenes, and make sure everything will cut together. Nobody is going to blame you if my shots don’t cut. Make the note and shut up about it. The whole thing about setting the pace is choosing the shots, lenses, eye lines, and then making sure the actors know where to look to match the action. Sometimes it may feel weird to them. That’s all between me and the actors. I’m not going to cover anything two ways, and we’re not coming back for a reshoot.
If you really think the editor is going to come back at you over eye line or axis issues, whisper to me that you’re putting “Shot under protest” on the script. Then get out of my way. We’re moving on.
A director is very vulnerable. His reputation is what gets him or her their next gig. All it takes is a dismissive sneer and comment at the wrap party of another show when their name comes up and it can cost them big time. Real money. I remember in the production office of “Danger Bay” listening to the production manager disparaging Phil Borsos as the director of “One Magic Christmas”. She had worked on “One Magic Christmas” and that gave her real authority when the producers of “Danger Bay” were listening to her. “Phil Borsos didn’t direct that picture,” she was saying. “Borsos was hiding in the production honey wagon shoveling coke up his nose. It was Frank Tidy, the DOP, who directed that picture.” And I had to intervene. “That’s not true,” I said.
“Were you there?” the production manager said.
“No,” I said. “I wasn’t there. And I don’t know what problems you had with Phil. No doubt he’s not an easy director for a production manager to work with. But if you look at his films, going back to Cooperage and Spar Tree and The Grey Fox, all the movies that preceded One Magic Christmas, you will see a visual connection through all the movies he made before he made that last picture. Phil was a visual stylist. I don’t care if he was snorting coke off a stripper’s belly while he was making “One Magic Christmas”. I don’t care if he never showed up on set. He made that picture. Don’t ask me how, but the proof is in the pictures. What’s more, while he was shooting that standard Hollywood action movie in Florida, and pissing off that Hollywood established producer, One Magic Christmas was dead. The powers of the industry had decided that Phil was too much trouble to work with. He was Hollywood Poison. His career was over. But Phil took the picture to Disney and performed CPR on it and showed his commitment to the movie that had been his dream for years, the movie he wanted to make so that he could join the ranks of directors like Frank Capra with It’s a Wonderful Life. Without Phil Borsos, One Magic Christmas would not exist. He brought it back from the dead through shear salesmanship and force of personality. So don’t tell people, especially a room full of producers, he didn’t direct it. It’s a Phil Borsos picture.
By the way, I was recently very gratified to hear one of the culture commenters on CBC radio this past Christmas talking about his admiration for One Magic Christmas. I know that movie had a lot of trouble finding its audience, but I personally loved it. It shows Phil Borsos maturing as a director with a real talent for working with actors. Such a tragedy that Phil died so young. He had more films to make, films I would really want to see. I always admired the man and felt that he should have had some of the attention that landed on me by default.
To say it again, a director is terribly vulnerable. All a director has is their reputation. That’s what gets them their next pay check. And their next chance to direct something significant, to practice their craft as a director.
I traveled to Seattle once, years ago, to take a meeting with a producer for PBS, the people who were making the very few television shows I’m interested in directing. At some point in the meeting, he said to me, “I hear you’re hard to work with.” and I knew exactly where that was coming from. It was coming from Nelvana in Toronto who were upset with me over giving them a hard time shooting The Edison Twins, of which I was one of the two startup directors. It had nothing to do with my directing. It had to do with them showing my work, and the work of my crew, to the Disney brass in the basement of their production offices because they wanted to save a few bucks by not renting a screening room at the lab. We had all been breaking our hearts trying to make a wonderful TV series and we were actually proud of our work, but they were going to screen it on a Siemens double system projector with too long a throw for the lens and wow and flutter on the sound track. The director of photography had come to me and begged me to do something about it, as had the sound man. Both said they wouldn’t attend the screening. I joined them in solidarity, and that cost me at least this one job that I knew about. The other startup director had more political sense than I ever had, and, I think, managed to keep the situation from costing him work and money.
I’m going to name names now. Well, one name at least. Because I’m dying and I’m never going to work again and I don’t give a fuck. Ken Jubenvill, that’s a name for you. Ken Jubenvill, you are an asshole. I thought you were a friend of mine. But an episodic director has no friends on an episodic set. It got back to me, you see. Of course it did. In a conversation with producers Ken said “Oh Zale. (dismissive shrug) Zale plays at being a director. ” What an asshole thing to say about me, Ken. And to producers yet. That may actually be the moment when the scales fell from my eyes and I started to admit to hating being a director in the fucking industry, while loving being a director in the real world. I shrugged my shoulders and smiled. Yeah, right, Ken. As Ron Orieux said about you, you tiny, perfect, director. I let it ride. The next time I saw Ken I smiled at him and asked how his family was doing. Was he any closer to making his tiny, perfect movie. Probably not. Give me a moment to check in to Almighty Voice on the IMDB. That should tell me. Did Ken ever get to make his little movie….
And there you have it. A shipload of TV movies. An equal number of episodic shows. One hell of an impressive director’s show reel. Looks like you had one hell of a lot of fun, Ken. I could almost envy a show real like that one. But no. I don’t see your movie on the list. You never got to make it.
And now I feel shitty, because revealing this about Ken makes me as big an asshole as he is. But of course I knew this already. There’s something about the movie industry, the industry, not making movies, that brings out the asshole in anybody.
But I will tell you who I hate. (Whom I hate?) I hate those who punch down. I hate the First AD on Kung Fu the Legend Continues who called a certain woman “The set bicycle.” Thinking it would make me think less of her when all it did was make me think less of him.
And even he is not the biggest asshole to infest the television movie industry. To see that asshole, all I need is a mirror.
I woke up this morning feeling like I had been kicked in the cajones. Men know that feeling. The dull, ache, nausea, but in my case not restricted to my testicles but radiating around to my lower back, seriously into both left and right groin, flowing down my quadriceps like setting cement until both legs felt rock hard and stiff.
The worst of it came only after I had gained my feet by assuming a pre-natal position, then dropping my legs off the edge of the bed to counter the weight of my body as I rolled into a sitting position, then reaching for the post (supporting the overhead beam) three feet from the edge of the bed and pulling myself up to stand. Gasp. Breathe. Ten minutes earlier I had asked Ruth to take one pill from my hydromorphone tablets and drop it into my mouth, then hold the water glass, half full, at my lips so that I could take a sip. I waited for the opioid to take some affect, but then I asked for a second.
Friday, February 17, 2023. It’s a process, not an event. I’m in the process of dying. Maybe. Maybe not. Maybe I can squeeze another year or two out of this life of mine. Can I hope for five years? Ten? I won’t know anything until my doctor’s appointment on the twenty-seventh of this month, ten days hence. Likely not even then. My doctor has a heavy accent, likely German, and he mumblers. He’s not a great communicator.
On this morning I had a commitment to drive Ruth to VIU, Vancouver Island University, to teach a class to visiting Japanese students. Remaining in bed was not an option, even if my bladder would have allowed it. I had to get up.
“Should I start your coffee water,” Ruth asked. I drink instant. Don’t judge. It’s what I like, and have liked ever since I read that it’s the coffee served in many five star hotels around the world, with the elite customers none the wiser. It’s just coffee.
“Yes please. I will be up.”
Ruth left the lights on so I wouldn’t go back to sleep and went upstairs to get her act together for her own struggle with consciousness. She hasn’t been feeling great herself for the past few days. Hopefully it’s just a cold. She had a Covid test last Monday, before joining me as support for my doctor’s appointment. Negative. So we know it isn’t that. I depend on her so much now. Depend on her both for physical and emotional support. This process ain’t easy. Not for anybody. Not for me, but perhaps even more so not for those who care about me, my family and close friends.
I have been dribbling out the following announcements for the past couple of weeks, ever since I came to a decision:
“In other news: Mark your calendar. May 15, 2023. Ruth and I had a talk the other night. Pending medical opinions, May 15 is the date I’ll request MAID, Medical Assistance in Dying. If these last few weeks are what my life is about, the party is over and I want out. That should give everybody time to get used to the idea, including me. Please keep the date under your hat, pending a formal announcement, pending conversations with my doctors, but the paperwork’s been done. It feels good to come to clarity.”
The first to get this news was my older sister, Catherine, eighteen months my senior. I told her first because we have discussed this eventuality extensively over the years. I could be confident that she would not play into the dramatics of the situation.
Her response: “I respect your decision but do hope you will wait until you get a more definite diagnosis from your Doctor. If this is what you fear it is and there is no chance of recovery okay I totally understand. There is really no way to soften this. It is a very final solution . I am the oldest of 5 and always hoped I would not outlive any of my siblings.️ (heart emogi, U.)”
The most recent recipient, yesterday, following the same message to my two boys and my daughter, went to my American friend, Danny, still living in China which is where I met him during our first year working in that country. I delayed giving Danny the news because I knew he wouldn’t want to hear it. “Hey David, just outside now. Gonna take me some time to digest the above. (Frowning emogi.) I’ll check in with you in a bit.”
Danny and I play Xiang Qi over zoom most weekends, making allowance for the time difference between here and China. A few years ago, I flew to Thailand while he would be there on business. Seventeen years of talking trash over Chinese chess should leave a hole to get over. People I hope will have a hard time letting me go with grace and maturity and courage, the strongest and most mature of them all being Ruth, my wife, my support, my love.
I’m back from driving Ruth to work now and walking the dog so he could have a pee before bringing him into the house. It’s a beautiful Nanaimo morning here. The scotch mist felt like putting my face over the vegetables in the super market as I let Enzo Lorenzo Barkinton Ferrari of the Manitoba Barkintons sniff the damp winter grass and empty his bladder.
Before we went in to the house we had a chance to introduce ourselves to Inge and her dignified, elderly and deaf, collie, Suki. Out for their daily morning walk past our home. Their passing always sets Enzo into a hysterical frenzy until I let him approach Suki for a peremptory butt sniff, which she ignores and he quickly catalogues as not of mating age. I do love this neighborhood.
Inge with her companion, Suki. A daily sight in our neighborhood of a morning.
And now I can feel the 18 mgs of hydromorphne starting to wear off. The drug has allowed me to type this much in relative comfort, but it’s time to take a break. I have a few things to do before the pain roars back. To be continued.
Why the pain? That’s the question… How did I get into this situation, counting my pills until I can get to talk to a doctor who holds power over my pain level. Well, when we first learned that my prostate cancer had metastasized into the bones of my pelvis and into lymph glands up into my neck, we assumed the worst and over-reacted. We went on our tour to Scotland. I gave away my Italian violin. I went into the palliative care program and settled down to wait for the inevitable.
After three, almost four, years of monthly attention from the cancer doctors and the support community, my cancer seemed to be under control. My PSA, Prostate Specific Antigen, number has been down into decimals, indicating no activity by the tumors. I’ve been taking the latest cancer drug, apalutamide trade named Erleada. I’ve lost my body hair and been returned to a prepubescent state. I was on a very low maintenance dose of hydromorphone, trade named Dilaudid. But I couldn’t leave well enough alone. I couldn’t tell whether my pain was a result of the cancer, or just the standard aches and pains of old age. So I asked the palliative care treatment doctor to wean me off the hydromorphone so we could see what would happen. I did not want to be on the opioids, with my brain wrapped in cotton baton.
Big mistake. I was free of the opioids for two or three months when the pain in my lower back started to build. I tried to call the palliative care doctor and had a terrible time getting a number for her. I left messages. She didn’t call me back. Finally her nurse called with the news that I’ve been discharged from palliative care. If I want back on the meds, I need to see my family doctor.
It usually takes at least a month to get an appointment with my family doctor. Fortunately, he’d had a cancellation and I got in to see him in less than a week. He gave me a very small prescription for the hydromorphone, set up an appointment for the end of this month, and sent me to get an xray of my lower back and left groin. This was still days before the pain crisis that sent me to emergency.
The next morning I hobbled in to the imaging center, endured the required positions on my back and side, then went home for a quiet weekend, only to go into full blown pain crisis Monday evening. Never have I ever ….. Screaming pain. Pain in my pelvis and lower back, radiating down into my legs and flashing up into my mid back and neck and shoulders. I called the 811 medical advice line and talked to a very nice nurse who told me to go to emergency at the hospital. We did that. They injected me with something, gave me something else to swallow, gave me a prescription for hydromorphone and something called gabapentine. The pain was more or less under control. That was when the emergency doctor looked at my back xray and I learned that I have a small compression fracture in my lumbar vertebrate. What the fuck? Where did that come from? Have my bones started to crumble for no reason. Up until now I’ve assumed that my bones are in good shape. I’ve had falls, but never any sign of a broken bone.
The drug prescription the hospital had given me was quickly evaporating. They had given me a prescription for hydromorphone and gabapentine, but a ridiculously small amount, not nearly enough to keep the pain under control until I see my doctor again at the end of the month. The gabapentine knocked me into zombie land, like a patient in “One Flew Over the Cuckoo’s Nest”. The clinic where my doctor worked said he was unavailable until his booked appointment but gave me a telephone appointment with another doctor. So I was sitting there with my phone, waiting for the call, when my phone chirped. The doctor’s call had gone straight to voice mail without ringing.
This is Canada. I don’t pay for doctor’s appointments unless I miss one. The last time this had happened, my phone going straight to voice mail without ringing, my doctor tried to bill me thirty bucks for a missed appointment. I refused to pay, on the grounds that I hadn’t missed the appointment, and let the clinic know that I will only take face to face appointments from now on. The clinic is only five minutes from our home, after all. I’d rather sit in their waiting room than have them assume I’m missing appointments. When it happened this time I jumped in the car and drove to the clinic. Then found another doctor who could see me.
This doctor made it very clear that she wasn’t interested in my medical history. That was for my family doctor. She wrote out a prescription for hydromorphone and gavapentin. She made clear that this was the same prescription my doctor had given me, which meant that it was also inadequate to get me to the appointment date.
This time when I took the gavapentin it knocked me into convulsions. Each pill was four times the dose of the pills given to me by the hospital. It scared me. No way I’m taking that stuff, so I must depend on the hydromorphone. These are four mg. tablets with instructions to take one tablet three times a day. The effect wears off in about an hour. I’ve been told to keep the pain under control, to not let it get away on me, because it’s much harder to bring it back down that to keep it controlled. Obviously, one short acting tablet three times a day is not going to do this. By my calculations, I need fifteen tablets every day to get me through a day and a night with the pain under control. Fifty tablets, as the doctor prescribed, will last me three and a half days, not the ten remaining until my next appointment. I have six tablets left as I write this.
And now they have me looking like an addict seeing multiple doctors to try to scam more drugs to sell on the street. I resent this, but there’s not much I can do about it.
Yesterday, Ruth and I enjoyed a long zoom session with Panda, our “Chinese daughter”, with her Canadian husband and two beautiful children, Oliver, her boy, and Clover, the girl and recent arrival. I was hoping that my Chinese friend Lv Min could join that zoom session, but I missed her text and had to settle for a video call. Lv Min and her husband, Simon, were our students seventeen years ago. They now also have two beautiful boys, Lucas and Marcus, for whom I had the honour of suggesting a name. My heart swells with pride to think that they are still a part of my life.
Time line of events:
Thursday, November 3 In person visit with palliative care treatment doctor. At my request I was given a schedule to wean me off all pain medication with the intention of seeing how much of my pain was due to cancer and how much was due to normal old age.
Wednesday, January 11 First notice lower back pain and comment to Ruth.
Monday, January 16 appointment with chiropractor, gentle massage and plaster
Thursday, January 19 appointment with chiropractor, heat and gentle massage. Back pain getting worse.
Tuesday, January 24 appointment with chiropractor. Back pain worse yet.
Wednesday, January 25 attempt to call palliative care doctor. I’m not called back. Nurse calls to inform me that I have been discharged from palliative care program. If I want any drugs or support I must see my family doctor. This usually takes at least a month, but I luck out. My doctor has had a cancellation and I can get in to see him that day.
Wednesday, January 25 family doctor in person visit. I’m given prescription for 50 tablets of 4 mg. hydromorphone, told to get an x ray of my lower back and left groin.
Thursdy, January 26 I get in to get an xray of my lower back and left groin.
Monday, January 30 hospital emergency visit, pain crisis. Given injection in shoulder, two tablets of something, prescription for some hydromorphone and some gabapentin. Pain crisis brought under control.
Tuesday January 31, morning chiropractor visit. Lunch with Katherine and Roger. After lunch I realize I can’t find the prescription from the hospital. Panic. Search. Drive to hospital emergency and discover prescription lying in a puddle where Ruth had picked me up after my emergency visit. Whew.
Wednesday February 1 teeth cleaned.
Tuesday February 7, I call the clinic and ask for a doctor to call me back. Phone call from doctor goes straight to voice mail. I drive to clinic and wait for another doctor to become available. Given prescription for small number (50?) of tablets of 4mb. hydromorphone. Plus a preseciption of 30 tablets of gabapentin which can’t be fulfilled at Shoppers Drug because of system problem.. Follow up appointment set for Feb. 13.
Monday, February 13. Doctor followup appointment. Ruth accompanies me. Given prescription for 50 tabs of 4mg. hydromorphone. Replacement prescription for gabapentin issued. I take both prescriptions to London drugs, then drive Ruth to VIU for work. I return to pick up prescriptions, then go to Felder Machinery to buy a new table saw. Returning home I take one of the gabapentin tablets. Never again. Terrifying. Muscle spasms. Shakes.
It is now Monday, February 20. I have six of the 4mg. hydromorphone to last me until I hear from a doctor tomorrow, or go in to emergency at the hospital. While my pain level right now is about a two out of ten, I’m feeling scared.
End of time line.
I was greatly conflicted about the table saw purchase, and decide to sleep on it overnight and return it the next morning. The following morning I decided to keep it. It is a beautiful piece of equipment, amazing engineering with a system that locks the blade in a millisecond on contact with skin. If I’m going to get this pain under control and live past my announced date for requesting MAID, May 15, 2023, I will definitely want this saw. It gives me a glimmer of hope.
This saga of pain and suffering has become tedious and boring. Sorry about that. I’ve skipped the part about seeing a chiropractor, or battling constipation.
And my life still goes on. Maybe. It all depends on the pain control, eh. Dying is a process, not an event. I shall try to make it as good and easy as possible. One way or another, this cannot continue.
Stay tuned for updates as they happen.
UpdateFebruary 22. Evening.
Yesterday I was in panic mode, the first day following a long weekend and I was I was down to my last, my very last, few tablets of hydromorphone, the only chemical between me and another pain crisis, another visit to the emergency department at the hospital. I needed to see a doctor. The word “desperate” was shaping my mental reality. I don’t like being desperate. Desperate people make very bad decisions. Desperate people are not cool. Desperate people are the very opposite of cool. Desperate people rob banks, or pharmacies, or buy street drugs of unknown provenance, adding their name to the long list people who have died in the past year from the ongoing overdose crisis in this part of the world, a list that includes my daughter’s fiance who died a few years ago from this very crisis.
My first call to the clinic attempting to get an appointment with a doctor, the automatic answering machine voice informed me that the queue was full. Please call again later.
I tried again at noon, and got through to a real live human after only a twenty minute wait. This was a real live human who was willing to listen to my situation, sound sympathetic, and yes, invest some time into trying to solve my problem. While my doctor wasn’t available that day, the receptionist could squeeze me in to see him at noon today. This was cutting things too close for comfort. Frantically calculating my pill usage, I agreed that I’d have enough to make it until noon today. Okay. Success.
And even further success. A glance at Ruth’s schedule, posted in her office (brilliant woman) revealed that she was free to attend with me. I like that because as I mentioned, my doctor has an accent and, just maybe, my hearing is not what it used to be.
We woke up this morning to four more inches of wet snow. Since we’re only five minutes from the clinic, I assumed that we’d have plenty of time to free the car and be mobile by eleven forty-five. There was ice under the snow. The charging cable was frozen into the charging port. We hadn’t lifted the windshield wipers before turning in for the night last night, so of course the wipers were frozen down. You would think that with the urgency of my situation I would have allowed more time to get ready. You would think. But there you go. The little EV has great thawing ability. Despite tension and fear, we were on our way a mere five minutes behind schedule. Plenty of time for the drive. No problem finding parking a mere ten feet from the clinic door. No problem with masks or antiseptic gel. No problem anywhere.
The appointment itself was… pure wonderful. Dr. Olivier seemed a different person once I told him I’ve chosen a date for MAID. He gave me time. He calculated dosages. He accepted my requests without any argument. Unlike previous visits, he even seemed sympathetic. I think I even caught a smile.
We left his office comforted and I felt assured that my pain would be kept under control. Maybe I’ll even be able to postpone the May 15 death date by months, maybe even by years. Maybe the zoom celebration of life party can be postponed by the same amount.
Maybe I’ll get to live long enough to do a few things with my new table saw.
I took Ruth to lunch at the nearby sushi restaurant, our favourite, while we waited for the prescriptions to be prepared. Ruth dropped me and Enzo at our door before she went off to do some banking. He immediately went hysterical barking at the dog down the street and trying to pull my shoulder out of its socket.
Life seemed suddenly back to normal. I have no pain. Like Bill Hicks said, it’s just a ride. Ready for tomorrow, eh.
Thanks for reading. A comment would be welcome.
UpdateFebruary 22. Morning.
And I’m up. As instructed by my doctor, I had one each of the timed released tablets of hydromorphone (one 12 mg and one 6 mg to reach the required dosage) before bed last night and one each of each this morning before coming up for coffee and breakfast. One thing I noticed last night when I awoke to pee: in the past I would wake up with my legs and groin soaked in sweat. A most uncomfortable situation. Last night and this morning? Dry’z a Bone, as the wet weather working gear was labeled during my teen years. (No boner, sadly. But I will take whatever I can get now.) It’s something. Now I’m off to Google to find out whether hydromorphone would kill my puppy should he ever manage to get his teeth on a stray tablet. (No way would I ever get it out of his mouth should he get one. It would be game on, for sure. He’s not named Enzo Ferrari for nothing. ) And whether Noloxone would be an appropriate emergency treatment.
And again, thanks for reading. A comment would be welcome.
UpdateFebruary 24. Almost Noon.
Dag Nabbit. I missed Danny’s call last night. It’s 3:20am there and Danny and his beautiful girlfriend are out singing karaoke. Maybe he can call me when he’s home again. Really would like a game.
I’m awake and close to pain free. Wonderful. Woot woot.
Update February 27, 8:45pm
I have no idea why, but somehow the process of dying doesn’t seem to be as smooth as I hoped. It seems I can expect good days and bad days. Yesterday was not exactly a bad day, but not a good day either. Today was not a good day. I’m taking far more of the hydromorphone than I want to be taking, with diminishing returns. Google has made everything confusing. I don’t really know which account I am in, what my user name should be, or which email address it will accept with associated password.
I’m constantly being told that I’m logged out, but I have no idea which program I was logged in to.
I’m too tired to work this out right now, so I’m off to join Ruth at the widescreen TV.
People seem passionate about social positions that have nothing to do with their own lives. A perfect example is a man beyond procreation age taking a passionate position against abortion. I suppose you could argue that a potential grandparent has an interest in whether his daughter bears a child, but that seems to be a thin argument to me. For myself, I don’t believe that any man has a right to an anti-abortion position of any kind. That is one hundred percent a women’s issue. They are the ones with the bodies that will be be affected. We don’t have a dog in that fight.
There is one social issue that I do feel entitled to sound off about, and that is Medical Assistance in Dying, or MAID. I have metastasized prostate cancer. I have registered for MAID.* In theory, a phone call to Dr. F_____ will trigger a sequence of events – organizing nursing assistance and procuring the necessary drugs – that will take about three days and result in a team showing up at a place of my choosing to kill me. Should it go that way, it will be a pleasant and painless death, very much like the one we just purchased for our beloved GouGou after almost sixteen years as a member of our family.
GouGou 2006-2022 A good and full life for a wonderful dog.
It’s been a long and hard battle to gain this right in Canada, and I’m grateful for it. I very much do have a dog in that fight. I have watched several cancer victims die. Horrible deaths. Death that we would not inflict on an animal. I really see no point in going through that disgusting and undignified process myself, reduced to utter dependence and kept alive by medical interventions far beyond the point when the party is over and it’s time to leave.
So I consider our current laws on medically assisted death a sign of social maturity. I’m grateful for the change from previous legislation, mostly because I am likely to benefit from it. Still, I don’t think we got it quite right.
This morning I learned that several states in the U.S. allow doctors to prescribe drugs fully intended to painlessly kill their patient, but are forbidden from administering those drugs themselves. Now that’s an idea that I like. There’s something wrong with doctors administering drugs intended to kill. From a comment she made to me (“As long as nobody calls me a murderer.” -Dr. F___) while discussing her agreement to terminate my life, I’m pretty sure that Dr. F____ is not completely comfortable with taking on that roll. I’m sincerely grateful that she is willing to do it for me. But her direct assistance is not at all necessary. Give me the means to go quietly, at my own time, and leave the rest up to me. That’s what I would really like.
What the hell is wrong with that?
*Before you leap to the assumption that my death is imminent, please calm down. My death may be years away, and it’s very likely that I will die of something else, like old age, before the cancer gets me. My oncologist tells me that the situation with prostate cancer reminds him of the early days in his career when he worked at a hospital treating AIDS patients. Back then, AIDS was a death sentence, a guaranteed terminal disease. Today, after decades of research, AIDS is a chronic disease that can’t be cured, but a person with HIV or even full blown AIDS may live for decades. So it is now with prostate cancer. I’m definitely in decline, but I look good on paper. My PSA, (Prostate Specific Antigen, an indication of tumor activity) level is decimals below one and it could be years before you can mourn or rejoice in my death.
I have touched on the Scotland trip in a previous post, if you care to search for it. Categorized as Music I’m involved in I think, or cancer. But I left out the important details, the why of why it happened. So this is the thing:
A few years ago, my PSA level was rising alarmingly. PSA stands for Prostate Specific Antigens and is a marker for prostate cancer. The PSA level is now a routine part of most blood tests for men. A rising PSA level is not good.
More tests followed, and eventually a biopsy of specific spots in my prostate. That resulted in a Gleason score, which I don’t remember and don’t really understand. All I know is that my Gleason score indicated a high likelihood of cancer.
The next test was a CAT scan of my whole body. I was told that it is very sensitive, and if the cancer has metastasized, i.e. escaped the prostate and invaded the rest of the body, the CAT scan will show it. I had to wait through a weekend for the results, and in the meantime I asked Dr. Google, who told me that the one year survival rate if the cancer has gone into the bones is forty five percent. The five year survival rate is one percent. Gives a person pause, eh.
The following week, with results in, I could breath a sigh of relief. The cancer had not gone into my bones. Treatment of the cancer in my prostate would probably stop it in its tracks, and give me decades more time to enjoy my life.
The doctors recommended three forms of attack – hormone therapy, radiation therapy, and brachytherapy. Prostate cancer feeds on testosterone, so the hormone therapy cuts off the supply. In the old days this was done simply by castration. Doctors don’t want to tell a patient that they are going to cut his balls off, so they call it a bilateral orchiectomy. Nowadays this is accomplished with drugs, specifically an injection of leuprolide acetate, commonly called lupron, into the abdominal cavity. Radiation therapy, which I liken to sticking your ass in a microwave oven, simply focuses beams of microwaves from several directions at the prostate to kill the cancer cells. It is inconvenient, in that it involved traveling to a major city for the treatment every weekday for several weeks, but painless. The brachytherapy involves planting radioactive seeds of iodine in the prostate. It requires a general anesthetic, but otherwise is not a big deal. I was given a card to show to the customs people if I ever want to leave the country or board a plane, explaining why I’m slightly radioactive. Which is not to say that these three treatments, combined, are not a big deal. Testosterone is a very important male hormone. It affects everything, from energy level, mood and depression, to sex drive. The radiation therapy and brachytherapy did a good job of destroying the nerve that allows an erection. So, say good bye not only to sex, but to the sex drive too. That’s something I really miss. I’m now taking four large pills daily each containing 240mg of Apalutamid (trade named Erleada). This is a new drug, not yet approved by the B.C. Medical plan, and would cost $4000/month if it weren’t supplied by big pharma “on compassionate grounds”, meaning, if I want to be cynical, that they need more test subjects. It’s a testosterone blocker, negating any action by whatever testosterone I have left. So far the only side effects seem to be that I’ve lost all my body hair and been returned to a pre-pubescent condition.
But what does all of this have to do with the Scotland trip? Sit back and relax, I’m getting to it.
Some time after I had all these treatments, my cancer seemed to be under control but the science marches on and a new kind of radiation scan was in development. My oncologist signed me up and sent me to Vancouver to be part of the trial, to get another radioactive injection and enjoy another slide into the big spinning doughnut for a PET scan. I was told that it would be a couple of weeks before I learned the results, but my oncologist phoned me after two days. He didn’t sound happy. The new test showed cancer in the bones of my pelvis, and in my lymph glands all the way up into my neck. To me this sounded like a death sentence.
This is a still from my PET scan looking at a cross section of my pelvis, in case you don’t want to take the time to watch the video. That bright yellow dot just to the right of the center is cancer. It’s in the bone of my pelvis, which is not a place I want to see it.
I told my wife, Ruth, about these results. We spent an evening cuddling and processing. That Sunday at the Unitarian fellowship, during a segment of their service called “Joys and Concerns” in which the congregation is encouraged to briefly share events in their lives, I made an announcement: “I’ve had some terrible news. Somebody very close to me, somebody I love, has just been diagnosed with terminal cancer. (pause for effect) And unfortunately it’s me.”
Cue digression cam: I am not a member of the Unitarian Fellowship. In pre-pandemic days I would show up after the services for the potluck snacks and conversation. My wife is very involved with the group, and has served on their board of directors for the past few years. They have provided a great community for her on her arrival in this new town with me. I am a radical atheist. The Unitarians are the closest thing to a church that I can stand to enter. They are very accepting of all religious and spiritual views, including atheists, and I’ve felt very welcomed there. Many in the congregation describe themselves as “spiritual but not religious”, or agnostic, or even atheist like me. In fact, one of my favourite members was the second woman to be ordained as a minister by the Lutheran church. On the day after her retirement, following decades of work in a hostel comforting the dying and their loved ones, she burned her clerical collar and announced that she didn’t believe any of it. What Unitarians have in common is that they all want to be good people. They are very involved in social justice issues, inclusion, environmental issues like climate change, and every other progressive cause. They have sponsored a Syrian immigrant. They run a homeless shelter in the basement of the building they own. Their sermons never talk about sin, redemption, or salvation, but more about compassion, caring, forgiveness, and appreciation. I appreciate the support they have provided for my wife, and, inadvertently, for me.
To get on with this story, after the diagnosis, and my bombshell announcement at the Unitarian fellowship, Ruth and I commenced what we describe as our “crying tour”. We visited our closest friends to give them the news. Our second or third stop was to see Rod and Chao, an amazing couple we met at an Immigration Welcome Center appreciation dinner; Ruth and I had volunteered to help a Syrian family adapt to life in Nanaimo. By great good fortune, I happened to be seated beside Rod Szasz, only one of the most amazing people I have ever met, avid historian, mountain climber who has been to the base camp on Everest, local forest ranger and search and rescue volunteer, fluent in Japaneses, entrepreneurial businessman. His Chinese wife, Chao, is equally impressive. The two met in Japan, and their eldest daughter, Akela, is also fluent in Japanese. Shortly before she graduated from high school, she was flown down to Miami to compete in a judo competition, following which she flew to Beijing to compete in a classical voice competition. Since graduation she’s been studying medicine in Scotland. Their youngest daughter, Kipling, has been my fiddle buddy since she was a child.
And now, if you are still with me, we’re getting to the reason Ruth and I ended up in Scotland. Rod and Chao were in their kitchen when I gave them the news about my diagnosis and prognosis. Rod immediately rushed out of the room and came back with a bottle of expensive scotch, telling me to take the bottle home. “I’m taking you to Scotland,” he announced. He had a trip planned for just before Christmas to meet up with Akela.
I told Rod to keep the bottle and I would return to drink it with him, which turned out to be a mistake because he had another friend he felt he needed to share it with. And my initial reaction to the invitation to travel with him was that I couldn’t let him go to that expense.
Kipling, meanwhile, had been sleeping. She came into the kitchen all sleepy eyed, and immediately picked up the mood and the look on her parents faces. “What’s going on?” she asked. So I told her. Now, Kipling is a very reserved young lady. While I’ve spent a bit of time with her, and taken her with me to fiddle sessions in Qualicum Beach, I wasn’t even sure that she liked me, or whether she was just going along with the urging of her parents. But Kipling crumbled when she got my news. She came to me crying and climbed into my lap and hugged me, sobbing. When I got her calmed down, we got out our fiddles and played “Aspen Grove” together, and “Calum’s Road”. That’s when the idea of playing “Calum’s Road” on Calum’s Road entered my head, along with the thought that I would eventually give my wonderful, and expensive, Italian fiddle to Kipling, an acceptable trade for a trip to Scotland.
The next day, Kipling ran in the Terry Fox run for Cancer wearing a sign that read “I’m running for Zale”. Ruth and I made plans to go to Scotland. Ruth had decided to come along, and to pay her own way.
So off the four of us went, Rod and Kipling, me and Ruth. Rod took care of all the bookings, arranging the AirBnB accommodations, the car rentals, the navigation. We met up with Akela just as her exams were finished and set off for what we later called the cemetery and castle tour.
Kipling and I played “Over the Sea to Skye” on the Isle of Skye.
We played “Calum’s Road” on Calum’s Road.
We played “Hut on Staffin Island” in Staffin.
We played “Neil Gough’s Lament for the Death of His Second Wife” in Doran Castle.
We played “Flowers of Edinburgh” in an Edinburgh cemetery.
I played “Da Shlockit Light” outside another ruined castle.
Rod began each day with an early morning run. He lead us through a wonderful selection of old cemeteries, which, on seeing endless tomb stones with the names of parents followed by six or eight children who died at various ages, left me wanting to slap an anti-vaxxer upside the head when I returned to Canada.
Along the way we met some beautiful people and had some interesting conversations.
All in all, it was the trip of a lifetime. I used to think that I didn’t want to see death coming. That I wanted to be walking in the park and foolishly left my protective garbage can lid at home when a meteorite slammed into my skull and killed me instantly. Or, failing that, to simply fall asleep and die quietly in the night, not realizing I was dead until the morning. But I wouldn’t have missed all of this for the world.
You are, no doubt, by now familiar with the Kubler-Ross formulated stages of dying. They begin with denial on receiving the dreaded news; this can’t be happening to me; I’m not really that sick; I feel fine. Then progress to anger; This isn’t fair; I don’t deserve this. And then bargaining; Okay, it’s not too late; I’ll clean up my life style and eat healthy, or accept Jesus or somebody else into my heart. Then the penultimate, depression; Why bother getting out of bed; I’m going to die anyway. And then finally acceptance. Death happens to everybody. It’s just my turn. I’ll just try to make the most of the time I have left.
I’ve always believed that the first four stages are a waste of emotional energy. Far better to simply vault over them to acceptance. Of course that is easier said than done when dealing with emotions. But that is what I do, as much as I can. If I have to die, experiencing the Scotland trip made it worth it. That and the loving support of my wife and friends.
Anticlimax: As you may have guessed, my reaction to the news that the cancer had metastasized into my bones turned out to be an overreaction. After a consultation with my oncologist, I’ve learned that, with advances in treatment, prostate cancer is quickly becoming a chronic disease, rather than a fatal one. He insists that I’m going to die eventually, but of something else, possibly old age. My PSA numbers, thanks to the apalutamide, are down into the low decimals, which means that the cancer is not active. I feel a bit foolish for making such a fuss. On the other hand, it’s been worth it just to experience the reaction from friends and family. I have spent most of my life feeling foolish, so I guess I can live with this.
Just planning ahead. Please register for my celebration of life party. It may not happen for a couple of years yet, but let’s all be ready.
I really hope to see you then and there. It’s going to be one hell of a party. As people register, I’ll start developing the program and lining up the performances. At the moment I’m planning on about three days of party, to allow friends from time zones in China and Australia a chance to drop in to say hello….uh…goodbye.
Monday last week my mystery ailment knocked me flat and sent me to emergency for a whole battery of tests, everything but a test for Covid. Tuesday I woke up feeling infinitely better. Wednesday I felt almost back to normal. And then yesterday, Friday, it came roaring back. Not as bad as it was on Monday, but bad enough. It hurts to take a deep breath. I struggle to walk up stairs and must pause to catch my breath at the top. I’m beginning to think this might actually be Covid 19, taking the piss because I had no fever and no cough. Whatever, it’s a bummer again. I’m shortly going back to bed, or as shortly as my 6’2 frame will allow.
My recent Facebook posts have garnered a whole shit ton of supportive and loving comments. Here’s one from Moira, another one of my amazing friends, an incredible artist who does a sketch every single day. You should check her out here: http://www.moiracarlson.com
Dear Zale,
I have been following your comments on Facebook about your plans for your death (and celebration thereof). I feel like I am ducking and avoiding by saying nothing but that presumes that I have something to say. Preferably something terribly wise or at least cogent. Sorry about that.
Death is a damn tricky concept. Our culture doesn’t deal with it well. Neither do I. I can give you platitudes about how you are loved and have people around you who care deeply about you and how that is the luckiest thing in this world. But it sounds like a platitude. It is a platitude.
Platitude: “A trite, meaningless, or prosaic statement, often used as a thought-terminating cliche, aimed at quelling social, emotional, or cognitive unease.” -from Wikipedia, the source of all knowledge. Oh yes, lots of cognitive unease.
So it is a platitude. But it is also true. And you are so very lucky that it is true. The older I get, the more I realize that what is really important is love. The damn Beatles were right.
One of the things you said on Facebook was that you were “not spiritual”. I have to disagree but perhaps it is really a matter of definition. I don’t think of “spiritual” as the same thing as believing in a god (certainly not the old gent in the white robes). I think of “spiritual” as having life force, having spirit, being attuned to the beauty and liveliness of this world. So in those terms, yes, you are spiritual.
I remember sitting and holding my father’s hand as he died. The moment it happened was so utterly clear to me. It was digital. One minute he was there and the next minute he wasn’t. The difference was spirit. At that moment his body became like a beloved old set of clothes, now too worn and perhaps fitting too tightly so that it needed to be discarded. I have no idea if, at that point, he was off on his next adventure or if that really was the end. Again, the older I get the more mysterious and unknowable the world becomes. Thank goodness.
I have nothing intelligent to say about how you choose to celebrate your passing. As far as I can see it is entirely your own business. So the whole point of this letter is just to say that I do care and that I am listening and that I value our friendship. Thank you for being you. In my very selfish way I have appreciated having you in my life and I will remember you when you are gone.
love,
Moira
And my long winded reply: Dear Moira: Thank you for this thoughtful and empathetic message. By now I’m probably repeating myself with the things I have said about death and dying. I have given it so much thought since my most recent diagnosis, talked about it, blogged about it, repeated the same clever and flippant phrases, and allowed it to consume far too much of my consciousness. So if you have read my words on this somewhere before, my apologies.
I used to agree with Woody Allen who said (paraphrased or misquoted probably): I don’t mind dying. I just don’t want to be here when it happens. I used to think that I wanted to be walking in the park without my tinfoil hat and garbage can lid when a meteor hits me on the back of the head and I’m just instantly gone. My own fault in that I didn’t take sensible precautions and didn’t see it coming. I used to think it would be nice to go to sleep some night feeling relaxed and happy with everything and just forget to breathe or forget to tell my heart to beat and just not wake up.
I have two examples of what I considered good deaths: A man I once knew, an actual rocket scientist working on the Space Shuttle, finished his breakfast, walked over to the picture window, spread his arms wide and said “What a beautiful day.” Then he fell over backwards and was dead before he hit the floor. What a way to go. My Uncle David in England, a long retired headmaster of a boys school with a hobby of photographing flowers, former intelligence officer with MI5, avowed communist and, I’m convinced, a counter spy responsible for the fall of the Soviet Union, rode his big Honda motorcycle home for tea at the age of ninety two. He sat down at the table, quite content with his world and his life, took a sip of his tea, and died. Well played, Uncle David.
That is the way I used to think I wanted to die. Let death take me while I was enjoying life, big surprise, except of course I wouldn’t be there to be surprised. I have changed my mind about that. This past year has been one of the most interesting and exciting and terrifying and heartwarming times of my life. I clearly see death coming, and I wouldn’t have missed this for the world. It started with what Ruth calls “Our crying tour.” during which we visited my closest friends to give them the news. My friends are the most talented and accomplished people I could ever hope to meet. Their universal reaction was almost enough to quiet that persistent voice in my head that tells me I’m a useless skin bag of crap and nobody could ever love me. Take our visit to Rod Szasz and his Chinese wife, Chao as an example. As a couple, they deserve a whole biography to describe how amazing they are. On giving them the news, Rod rushed out of the room and came back with a very expensive bottle of scotch, poured us drinks, and told me to take the bottle home with me. (I declined, and told him I’d be back to drink it with him.) His daughter, Akela, is currently studying medicine in Scotland and Rod was planning a visit. “I’m taking you to Scotland,” he announced. I protested that I couldn’t put him to that expense. But then their other daughter, Kipling, came into the kitchen where we were talking, took one look at everybody’s expression and demanded to know what was going on. Kipling and I have been fiddle buddies for years. That has fallen off recently because she prefers reading music and studying classical violin and doesn’t care that much for fiddle music. She’s a very reserved young woman, not much given to expressing emotions, and I’ve never been sure she does more than tolerate me. But when I gave her the news she broke down. She came and hugged me, sobbing. After she calmed down, we got out our fiddles and played a couple of pieces we both know. I realized that there is nobody I’d rather pass my violin along to than her. It’s a high end instrument and surely worth a trip to Scotland. So I told Rod I’d accept his offer. The next day, Kipling ran in the Cancer run wearing a card that said “I’m running for Zale.”
Rod and Kipling and Ruth and I all went off to Scotland to visit and travel with Akela during her Christmas break. Kipling and I played “Over the Sea to Skye” on the Island of Sky. We played “Calum’s Road” on Calum’s Road. We played “Hut on Staffin Island” in Staffin. We played “Neil Gow’s Lament for the Death of his Second Wife” in Dorin Castle. We played “Flowers of Edinburgh” in an Edinburgh cemetery. It was truly a trip of a lifetime and I wouldn’t have missed it for the world.
I was a little embarrassed when the oncologist told me to chill out. He said that my death is unlikely to happen all that soon, and I would probably live to die of something else. So far he’s been correct, though I don’t trust his optimism. The thing about this damned disease is that it turns me into a hypochondriac. Every little ache and pain of old age is a sign of the impending end. This past Monday was the most extreme example. I have no idea what hit me, but it hit me hard. I really felt like my time was coming soon, and I’d better get ready for it. So I pushed though with finalizing my application for Medical Assistance in Dying, MAID, and got serious about plans for my exit event. After all the tests in ER, the ECG, the x ray, the blood work, the ultrasound, the CAT scan, the doctors were unable to find any cause for my pain, but I have no doubt that the pain was real. It wasn’t a panic attack, or psychosomatic. Whatever it was, I woke up on Tuesday morning feeling infinitely better, and now I feel a weak and shaky normal. Go figure. Anyway, it motivated me to work out some details with Ruth, to give her passwords and usernames and other information I will be unable to supply after I’m gone. MAID is in place and ready to be activated, so no waiting period will be required. Today we’ll go to the bank and make sure Ruth has her name on all accounts.
I have seen examples of the kinds of death I don’t want to have. My mother lingered for weeks in and out of delirium, hand fed, hand cleaned, uncomfortable no matter what medical marvels the drugs provided. Horrible to watch, and totally pointless. Years ago I traveled from Toronto to New York to visit an actor I had worked with in hospice. Again, I couldn’t see the point to his suffering. Truly horrible.
As for looking to professional help: I just read an article about a football player who tried to blow his brains out by putting a nine millimeter pistol to his temple and pulling the trigger. I could make jokes about an athlete not having or needing brains, but he perforated his head with only the loss of one eye. Years ago I talked to a paramedic who arrived on the scene seconds after a man had put a double barreled shotgun under his chin and pulled both triggers. Ten days later he walked out of the hospital, minus his lower jaw and nose. How cruel was that. So I’m grateful for MAID. When I decide to go, it will be good to have predictable and experienced medical help. Failing to kill myself would be so embarrassing, eh. Also, if there’s going to be a celebration of life, our new, emotionally defanged, term for memorial service or wake, I want to be there. It’ll be fun. I hope you and Barry will attend.
Thanks again for your message, Moira. Love and hugs to both of you. Zale
One last thing worth mentioning. Another friend who prefers to remain anonymous sent me an unsolicited $2000 saying it was to “grease the wheels”. I can’t pretend I don’t have good uses for the money, much as I hate to accept it. That’s going to buy us the wide screen TV for my celebration of life rather than us having to rent one. Wheel greased.
Ah, my wonderful, amazing, talented and beautiful friends. I am overwhelmed with love and gratitude for all of you.
Now, if you are reading these posts, isn’t it time you gave me a comment. Anything. Just anything that will let me know I’m not screaming into the void. That would be so appreciated. Criticize my writing. You know you want to.
UPDATE: I’ve just learned that leaving a comment is not as intuitive as I thought. To leave a comment you have to go to the bottom of the post and click on reply. It will ask you for your name and email, but promise not to publish your email. Also, if you want to use a fake name and fake email, it will still accept it. The thing is, your comment won’t show up until I approve it. Once I have approved it, all subsequent comments made with the same name and email address will show up without moderation. Thanks to John Gooding for helping me figure this out.
MAID is one of those super easy to remember acronyms. It stands for Medical Assistance in Dying. When I first heard about it I was incensed at the bureaucratic roadblocks in place before I could have access to this service. Specifically I was pissed at the idea that I would have to give ten days advanced notice before a doctor could be summoned to put me in park and turn off my ignition. It’s not that I’m against planning. But the thought of setting a date ten days in the future and having to wait through the ten days did not appeal to me. I’m an impulsive person. I want to make up my mind when it’s time to leave the party and just go.
And of course I’m perfectly capable of going out sideways (as my dear father was fond of calling it) without anybody’s help. A tank of nitrogen from the welding supply place and a plastic bag would do the trick nicely. But that still left the possibility of failure. Nothing would embarrass me more than failing to kill myself.
I once talked to a paramedic who arrived on the scene mere seconds after a man put both barrels of a double barrel shotgun under his chin and pulled both triggers. Ten days later he walked out of the hospital, minus his face. They saved his life. The shotgun pellets were deflected by the shape of his skull during the process of sweeping off his jaw, lips, and nose. Now, to me that sounds like a very serious suicide attempt, and the cruelty of saving his life is truly monstrous.
I read about a man who shot himself in the head with a pistol, and then walked around for a while, visiting a variety of locations, thoroughly confusing the police investigators, before succumbing to his injury. That also sounds like a serious attempt, followed by a whole lot of no fun.
So medical assistance is a very attractive option, if they will just cut the red tape and let me do things my own way. And now it turned out they will.
When I mentioned my concerns to my wonderful palliative care team, they told me that the ten day waiting period begins with putting in an application. Once that happens, and ten days elapses, a request for help finding the exit can be made at any time, and can proceed immediately. Well, that’s more like it. I made an appointment with our family doctor to get the process started.
I was told that a face to face appointment was required, and that took well over a month to achieve in these times of Covid19. I went in expecting my doctor to print out some forms and ask me some questions and then the clock would start on the ten days. But when I arrived at my doctor’s office, it turned out that the system had been adjusted and he wasn’t hip to the changes. There are now only two doctors in Nanaimo who do assessment. I was given the name of one of them, Dr. F______, and a phone number. I called. She asked me to go online to download the application form, fill it in, get it signed by two witnesses and myself all at the same time, and get it back to her. That happened in a day. Two of our best friends signed the form for me, I scanned it, and emailed it off. The next day Dr. F________ called to set up a time for a video interview. That happened last night. Now the form she has filled out goes to another doctor who will also get in touch with me to set up a video interview. But the ten days clock is now ticking.
I really enjoyed my conversation with Dr. F_________. It turned out the main point of the interview was to determine whether I qualified for MAID, i.e. do I have a terminal illness and do I not have a mental disorder and do I seem to be making rational decisions. As near as I can tell I passed this qualifying lap with flying colours. I told Dr. F_______ that I really appreciate her willingness to do this kind of service, and that I feel a distinct affinity for her as a person. I told her that if hers is the last face I’m ever going to see, I’m okay with that. She smiled, and seemed to take that as a compliment. I asked her if she would be willing to arrive dressed as death and carrying a scythe. She seemed to think that could be possible. She has attended some wild end of life parties at funeral homes in the past. I have the scythe hanging on my shed wall in the back yard. I might make a cardboard blade for it, just to make sure nobody get hurt.
Years ago when Doctor Kevorkian was trying to goad the government into charging him with murder so he could present the case for medical assistance in dying, I watched him terminate the live of a man with ALS. That was a disturbing video. It was all so quick and clinical. The man was asked whether he wanted to die, replied that he did, and Kevorkian injected him with drugs that would accomplish that result. There was no emotion on display by anybody. It wasn’t an attractive ad for medical assistance in dying, but it did get Kevorkian arrested, tried for murder, and jailed. So it served it’s purpose.
Now Canada has made medical assistance in dying legal, if certain rules are followed. The catch is that I will have to be able to give conscious and enthusiastic consent right up to the last minute. I can’t be unconscious, or unable to communicate. I won’t be able to write out instructions for my wife in the event that I have a stroke, or lose the ability to speak. This means I will have to set a date and be ready to go when that date arrives. I’m getting used to that idea.
Co-incidentally, my son Casey phone me the night of the call from Dr. F______. Casey is a paramedic. He has seen what happens if people miss the opportunity to die when they want to, and he doesn’t want to see it happen to his father. So he is totally on board with the MAID program. We talked about my interest in having a green burial, and Casey suggested that I could be buried in a green way on his beautiful property up in Salmo. He also said he would be honoured to be a witness to my death. That all prompted the following letter:
Subject: my current thinking about my inevitable demise.
Dear Casey:
Thanks for that phone call last night, and for your invitation to have a green burial on your property. I had my first interview with Dr. Marcia F______, one of the two doctors in Nanaimo who are doing assessments and taking registrations for the MAID program. That brought up a whole bunch of issues and things for me to think about, so now it’s four in the morning, I can’t sleep, and I wanted to write a some of this stuff down. First I want to say that you can’t say fuck off to the authorities and just bury me on your property. They would make you disinter me and replant me in a certified cemetery and, even with a long and expensive court battle, they would succeed in making that happen. I love the idea of you establishing a family plot on your property. Rather than taking up your time, I’ll do the research and find out what it will take to get you certified as a small cemetery. My thoughts on my death have evolved a lot since my diagnosis. I used to think that I didn’t want to see death coming, that I wanted to be walking in the park without my tinfoil hat and garbage can lid and get hit by a meteor and instantly gone. But as I get into the conversations with you and with friends, I realize that I wouldn’t miss this time and experience for anything. Already I’ve had the magical trip to Scotland with Rod and Ruth and Rod’s daughter, Kipling. Who knows what other delights await me. Ruth wants us to plan our endings, and I’m all for that. I also used to think that I didn’t want to make any kind of a fuss. I thought I wanted to make a “French exit” from the party, one where you slip quietly away without anybody noticing that you are leaving until they realize that you are gone. I’m now changing my mind on that too, and now thinking that saying goodbye to everybody could be a nice thing to do. So here’s the sequence of events as I fantasize it happening: When I feel that the time is right, I want to set a date for a celebration of my life party. I’d like it to happen here in Nanaimo, with invitations sent to everybody I have ever known, possibly in the Wellington Hall a block from our house if it looks like there will be more people coming than would fit comfortably in our house and yard. I would like a banner in evidence someplace stating: “This is not about you.” I’d like it to be a wild and joyful party, with plenty of booze and smokables and food, though I’d like to discourage people from actually getting drunk or stoned. Just enough to lower inhibitions and set a party mood. (I may change my mind about this and make it a dry party. The last thing I want to have to deal with is a bunch of emotional drunks.) I’d like mostly live music and an open mic for people to take a turn saying whatever they want to say to me, good or bad. I’d like to MC the event myself. I’d like the party to start early, say about four in the afternoon, and go until eleven in the evening. At some point, probably around eight o’clock, Dr. F________ will arrive. She thinks she’d be okay with coming in costume dressed as Death and carrying her medical equipment and a scythe (which I can provide). I’d like her to be welcomed warmly by everybody there, and given maybe half an hour or so to meet people and enjoy the party. Then she and I, along with Ruth and you and a select group of family and friends, will slip away and go to our home. There I would like time to have a shower and a shave and lie down on our bed with everybody gathered around me as Dr. F_______ puts the IV’s into my arms. I think she said that the process takes about ten minutes and is much like going under anesthetics for an operation. That being the case, I’d like to relax and listen to Philip Dyson play Scott Joplin’s “Solace” as I slip from consciousness. At the moment I think I’d like to have all of this video taped, but that may change after discussions with Ruth and others. Maybe it would be better to keep it private and intimate. Once I’m dead, I would like my body to be transported to Salmo to your property for a green burial. I’m going to investigate the permissions required for this to happen. And from this point everything is out of my hands and control. So whatever happens will be up to you, Ruth, Laara, and possibly other relatives who want to be involved. You need to make sure that your family is okay with all of this. That’s a lot for your kids to deal with, and from Kiri’s reaction to the mere mention of palliative care I’d guess there will be some emotions to process. So that’s it for tonight. Once again I want to make it clear that I’m hoping for at least one more hunting season with my friend Rod, and as many going into the future as my health allows. So this is all long range planning.
Any questions? Much love Dad
Since writing this letter I have investigated getting permission for a green burial on Casey’s property. It turns out to be something that I can’t do, and he doesn’t have time to do. So that part of the plan is up int he air. I also realized that by the time I’m ready for a visit from Dr. F________, I will probably be too sick to MC a party, and probably too sick to want to experience a party. So who knows how much of this fantasy will come to pass in the end. But it is an interesting fantasy, eh.
I’m sure there will be more to say about all of this later. If you have any feelings or opinions about what I have written, in this or any other post, please take a few minutes and add a comment. I get the feeling I’m screaming into the void here, but I do know that some people stumble on my blog and read it. It this is you, please leave a comment.
I’m still dealing with the fact that I am terminal. This condition comes with all kinds of thoughts and considerations, but mostly questions. I can tell that I’m in decline. That’s obvious. But how long do I have? And how will I know when my time is really running out? Exactly how terminal am I? After all, we are all terminal, eh.
The doctors are unbearably optimistic. It feels like they are in denial, or like they don’t want me to get upset and do something premature, like offing myself. But it seems obvious to me that a time will come when I will want to head for the exit door. When the party is over, I will to want to leave quietly, skipping the indignities and pain of a long and lingering circling of the drain.
I chose this image for circling the drain from a Google image search. Most of the images available showed the screen of the drain blocking larger chunks from going down. But this one conveys the real horror of the expression: There’s nothing to catch me when the inevitable happens and I’m sucked down into that black hole of oblivion.
I was quite annoyed when I read that, according to the rules of MAID (Medical Assistance in Dying), ten days notice is required before I could have a doctor’s help in doing myself in. You mean, I would have to pick a date ten days in advance of a visit from Dr. Kevorkian? Then I would have to lie around waiting for his arrival? This would be hard to take. I don’t want some bureaucrats dictating how and when I exit this planet. I just want them to get the fuck out of my way. So please, just give me the pills or the syringe and walk away.
And then, once the ten day cooling off period had passed, I would be required to sign my name to a consent form? What if I can’t do that? What if, during the ten days, I have slipped into an intermittent coma? What if I become a brain locked in an unresponsive body, unable to speak or move or hold a pen?
Yesterday I learned that my understanding was flawed. I was discussing my situation with the palliative care treatment doctor, Doctor Katherine King, a kindly maternal woman who checks in on me once a month and never gives me any argument about renewing my opioid prescription. I was explaining that my fear is of being blind sided by a sudden loss of capacity or cognitive ability which would prevent me from giving consent. I know that my situation can change overnight. A stroke. A fall. A further loss of function. And suddenly it’s obvious that my life is not worth living. At that point I want to just go. I don’t want to have to make an application and wait ten days, hoping that when the ten days are up I will still be able to give consent.
Dr. King, or maybe it was the angel who was on the conference call, Angela J. Lorenz RN BSN CHPCN(C)Palliative Care Coordinator, Island Health ((Angela, Such an appropriate name.) informed me that this isn’t the way it works. The ten days notice is from the point when I make an application to be on the program. Ten days after that there is no waiting period. I will be able to just call the doctor and exit, assuming the doctor will make a house call.
So it’s more like buying a gun with the intention of shooting myself and having to go through a waiting period before I can take possession. Once the waiting period is over and I have the gun, I can put it to my head and pull the trigger whenever I’m ready.
That’s a comfort. Now if I can just talk them into giving me the medication and leaving it with me, to use when and if… But this isn’t going to happen.
Of course, what I really want is to give my sister or my wife written instructions to send me off as soon as I’m unable to communicate. Then I could stop worrying about losing control. But this is not allowed under the present rules.
Hopefully this will change as the public becomes more accepting of our right to terminate and the damned Catholics stop raising objections. For now, ability to confirm consent is required up to the point just before the medication is given that will put this amazing body into park and turn off the ignition.
It’s another beautiful Fall day. The squirrel is back at the bird feeder that I hung on the clothes line. For now there’s still a lot to enjoy about being alive. I’m just making contingency plans, eh.
