A Dog in the Fight

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.

Nostalgia Ain’t What it Used to Be

Thank goodness. I’ve always disliked nostalgia. Reminders of my past, or unbidden memories, made me feel so very sad. That life, those experiences, are gone and not coming back. Often the memory would make me cringe for one reason or another, usually at behavior I’m not proud of. Or else it would just make me sad. The entire previous generation in my family is gone now, with the exception of Aunt Mary in England who keeps on trucking into her late nineties. Friends keep falling off the planet. Many of the big names, the stars, the celebrities I worked with or knew, have also shuffled off this mortal coil. My world is being hollowed out.

For me, the worst thing about the nostalgia presented on social media can be summed up in the phrase: “Those were the good old days”. No they weren’t, damn it. I was born into a sexist, racists, gender essentialist, intolerant society. Don’t tell me about how great it was to ride in the back of a pickup truck, or drink from the garden hose or run loose and unsupervised until the street lights came on. Yeah, those things were fun. My childhood was wonderful. But it was also a time when a woman couldn’t get a credit card or open a bank account without her husband’s signature. It was a time when farm boys went into the big city to beat up queers – good farm boy fun. A time when a black man couldn’t drink at the courthouse fountain, let along become president of the United States. It was a time of intolerance. During my long hair hippy phase, I was refused service in a restaurant for having hair about as long as it is right now.

When I was a kid, women’s rights, gay rights, black rights, and colour television were still years in the future. The silent light switch still hadn’t been marketed and turning off a light made a loud clack. A long distance phone call meant that somebody had died. In every way I can think of, society and technology is better by far than it was in my childhood. Now I play Chinese chess every weekend (great game, much better than international chess. You can check it out for free here.) with my friend Danny, an American still stuck in China. Or talk to him, or former students in Shanghai, on voice calls or video links. For free.

Chinese chess is more fun than international chess. It’s a great way to overcome the language barrier when you meet Chinese people. I may not be fluent in Chinese, but I play Xiangqi like a boss.

Subtle improvements in technology keep sneaking up on me. I mentioned the silent light switch. The enameled pots and pans of my childhood are gone now, as are the aluminum ones. Gotta love stainless steel cookware and utensils. Air hand dryers in washrooms actually work and I don’t mind using them. Battery powered drills and screw drivers are amazing, as are all of the battery powered tech from laqwn mowers to our car. I just noticed that our new toilet seat closes gently, without the loud clack of the old one. It’s hardly worth mentioning that my smart phone does everything my computer can do. In fact, I left my laptop at home on my last trip to Italy. Didn’t need it.

The only thing that was better in the fifties, if you were straight, white, and of the male gender, was our youth, health, and energy level. That was the only thing that was good about the good old days.

Most annoying about social media rants about the good old days is the dissing of kids today. The kids today are great, okay. They are smarter than we were, better educated, more engaged, and the world will be in good hands when we finally turn it over to them. The young people I meet, beside being awesomely beautiful, are just wonderful people. We boomers are just jealous.

To get back on track here, I’ve hated nostalgia for some years now. But recently I woke up in the wee hours of the morning, unable to get back to sleep as free association memories flipped through my brain. The six years old, fishing in our gulley, redolent with the smell of skunk cabbage, alive with mosquitoes, racoon tracks like tiny hand prints, for the the little trout I would stick in my pocket and take home to clean so my mother could fry them up for my breakfast. That lonely drive down I5 to Los Angeles, feeling sorry for myself because I had to leave home to scare up some work. High points like the standing ovation in Alice Tulley Hall at the New York Film Festival, or on the bridge of the Yukon while we steamed into a tropical sunset with porpoises leaping in our bow wave and flying fish with iridescent cellophane wings, a hundred in a school, launching from the waves to glitter in the sun. Low points like getting fired from a job I never should have accepted. Random memories, good and bad, in no particular order. Riding high. Crashing hard. Nostalgia writ large. But this time, for whatever reason, they didn’t evoke the usual sadness and longing for the past. This time it was like watching one of those corny Hollywood biopics about my life and times. It was just a great movie.

I think the difference is that I can see the end coming now, and, looking back, I’ve realized that there’s no point in taking anything too seriously. Nobody gets out alive, as my father used to tell me. Sure, there were tough times, terrible moments, but also moments of triumph and exhilaration. It’s been one hell of a life. A hell of a ride, as Bill Hicks put it. I’m so glad I got to live it, to marvel at all the changes, and to still be here for another trip around the sun.

A More Complete Explanation

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.

Not Dying Yet

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.