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.
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.
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.
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
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.
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.
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.
I had another blood test this weekend, on Saturday morning. I’m getting very used to being stabbed in a vein. I’m a familiar face at Lifelab now, just a few blocks from where we live.
Today I got the results on line through My Ehealth. My PSA level at the start of this hormone therapy was 23. Very high. The next was at nine, after the Lupron injection but before I started the Apalutamide. This one was at 4, and for the first time did not display the danger triangle to bring it to the attention of the doctors, since anything under 6 is not considered cause for alarm.
So I guess this means the drugs are working. One of the side effects they warn about is fatigue, and this has been hitting me hard. I could sleep all day and never feel fully awake. Another is headaches, and I have been experiencing them too, though acetaminophen and coffee seems to knock them back. My budding breasts are still quite painful, and hugs can hurt. Worth it though. Very worth it.
In other news, Ruth bought me a good pair of walking shoes as an early Christmas present in preparation for our trip to Scotland. The trip to Scotland might be postponed, because Rod’s mother is very ill and in the hospital. He’ll want to postpone the trip if it looks like she might die. So he gave us a heads up: For now we are still leaving on Thursday, but he could cancel at the last minute.
DAR, our house sitter, dog sitter, chicken wrangler will arrive tomorrow. If the trip gets postponed, we’ll have a nice visit.
I will see Dr. Marback on Wednesday. Expect a report on that.
My last couple of posts have been about having cancer, and the side effects of the hormone therapy. Since this is my homepage on my browser, every time I fire up this computer I’ve been greeted with the headline: I’m Growing Tits Now. That’s getting to be a drag. Not that I’m likely to forget the fact.
While having cancer is always on my mind, like the background hum from the big bang that we hear as radio static, it’s far from the most important fact of my life. I shall make a list:
Today I bought a new router bit. I’m putting a chair back together for Sadie, my former sister in law. It fell apart because somebody left it out in the weather. I’ve glued the seat back together, but don’t trust it to not crack at the glue joints. That seat was originally built in the factory from nice blocks of oak, with four parallel surfaces, which made gluing it easy. Now that it’s contoured, it’s difficult to clamp without having gaps at the joints. I bought the router bit to let me inlay a piece of hardwood on the underside. That should guarantee that it won’t split. I’ll spare you the details, but this turned out to be more complicated than I hoped, and it still isn’t completed.
We had had another Stagefright Cafe open mic night at Wellington Hall this week. Ruth and I put that together once a month, recreating a 1965 coffee house. Every event has been different and great fun. We sell coffee at ten cents a cup. I bake banana bread and Ruth bakes chocolate chip cookies.
We replaced the roof on my workshop shed this week. It was leaking slightly, and that kind of thing has to be stopped. So we bought corrugated steel sheets and covered it. Ruth did the work on the roof. I did the cutting and handing stuff up to her.
I had a rehearsal with the new Vacant Lot Band. The name is reclaimed from my jug band in the sixties. Great rehearsal. I’m excited about getting a group going again.
The rehearsal was followed by a drive to Qualicum Beach to play with the Oceanside Jammers, my fiddle group.
I’m getting excited about the trip to Scotland. That happens this coming Thursday and will keep us away until December 26.
All in all, there’s a lot going on in my life. Each item on the list above deserves more details and pictures. Maybe later. For now, this gets rid of the headline that I didn’t like.
The injection I had during my appointment with Dr. Atwell in Victoria is a drug intended to block my production of testosterone. The new drug, the apalutamide, is an AR antagonist, which means it blocks the action of testosterone. Between the two of them I’m getting to learn what a thirteen year old girl experiences. My breasts are swollen and quite painful.
At least I don’t have some horny teenaged guy trying to fondle them. On the other hand… no, let’s not go there.
The thought crossed my mind that since I can’t have an erection any more, not since the brachytherapy blasted the nerve that runs through my prostate, and now that I’m developing breasts, maybe I should go all the way and transition. Now that would be an adventure.
Unfortunately, I would be a six foot two monster of a woman. Far too ugly for any man to find sexually attractive. So I guess that’s just not an option. I have no interest in becoming a “two bagger”. Shit. I can’t believe I thought that, much less wrote it. The culture I grew up in was so very misogynistic and that’s reflected in the jokes we told each other. So in case you lead a sheltered life, I’ll explain what a two bagger is. That’s a woman who is so ugly you need to bags to fuck her. One to put over her head, and one for you in case hers falls off.
I have mixed feelings about using profanity in these posts. But generally I’m giving myself permission. The five stages of dying, according to Kubler-Ross, are denial, anger, bargaining, depression, and acceptance. I’ve always felt that the first four of these are a complete waste of emotional energy. If this is my new reality, I might as well skip the drama and go straight to acceptance. But the first four stages come to the surface sometimes, and in unexpected ways.
Denial: I do find myself thinking, hey, I’m not sick. I don’t have any pain. Why did I listen to the doctors and allow them to lock up my mojo. This isn’t really happening.
Anger: Fuck fuck fuck fuck fuck and shit and cunt and asshole too. I will fucking swear if I feel like it. Why the fuck not. This sucks and I have a perfect right to be pissed off about it.
Bargaining: Okay. I will accept treatment. I can put up with losing my masculinity, losing the ability to have an erection, developing secondary female sex characteristics. It’s a deal. I just want to live.
Depression: I’m going back to bed. Yeah, I know that these times of consciousness a not going to last. I know I should be enjoying every minute while I still can. But I just don’t care. Why should I. It’s game over anyway and I like sleeping.
Acceptance: I’m not alone in this. I have a wonderful community of supportive friends and a loving wife I can talk to and cuddle with. Every day this side of the grass is a good day. Look at how beautiful the world is, how intricate are the forms and variety of life. I’m just a part of a very natural cycle that we all share.
I said in my last post that there is no escape from this. I’m constantly reminded. Last time it was a message saying I have a bone scan scheduled on February 13. Yesterday it was a letter from the Medical Imaging Department of the hospital letting me know I have a “CT Chest, Abdomen, Pelvis w/contrast” scheduled for February 21. Looking at my calendar when I entered this latter date, I notice that I have another Lupron injection due on February 28. Nope. Can’t forget for a minute that I have cancer.
But I’m not dying. Not yet. Not for years and years, they tell me.
Okay, maybe not JUST about having cancer. I do have my fiddle practice and piano practice and house renovations and getting ready for the December Stagefright Cafe open mic night that happens this Monday and the fiddle workshop I went to on Wednesday and getting ready for my trip to Scotland and… when I think about it I do have a very full life. But there’s always something. Always a reminder.
Today it was the Fedex guy at my door with an unexpected gift from the cancer society, My Treatment Journal. It’s a calendar with prompts about appointments and medicine and symptom notes. It includes stickers to put on the pages for appointments and lab tests. They make me feel like a kindergarten kid again.
The Fedex guy was at the door when I arrived, having just picked Ruth up at VIU (Bancouver Island University where she teaches) and dropped her off at FUFON (First Unitarian Fellowship of Nanaim where she’s chairman of the board of directors) for a board meeting. I was desperate to get into the house and have a pee, so I grabbed the envelope and unlocked the door, asking if he needed a signature. He didn’t. But I didn’t make it into the house in time and peed my pants a bit before I could get to the toilet. This is the first time this has happened, but it’s been a close call several times. The prostate treatment has caused me to urinate frequently, and when the urge to pee comes on, I have a very short time to get to a toilet. I think this means I better check into Depends, or a generic adult diaper. Fuck. There’s no dignity to this situation.
I had a meeting on Wednesday with Dr. Katherine King at the palliative care ward at the hospital. She asked me all kinds of questions about my condition. I talked a lot. The meeting included Katrina, a nurse, and a young medical student from Taiwan whose name I didn’t catch. I told them about the coming trip to Scotland, and why it is happening. Katrina said she’s been there for a highland dance competition.
Dr. Atwell in Victoria has referred me to Dr. Marback here in Nanaimo. My new drugs have arrived, and I’m to take four rather large tablets of Erleada (apalutamide) at the same time every day. So they go into my pill organizer with the daily compartments to help me keep track of whether I’ve taken my meds or not.
The Erleada comes from Bioscript Pharmacy on the mainland, where my contact person is Pat Quon, R.Ph. Apparently a one month supply costs close to four thousand dollars, but the manufacturer is providing them at no cost “for compassionate reasons”. I’m grateful. Because the drug is so expensive, they will only send over a one month supply, so I’ve given Mr. Quon a heads up that I’ll be in Scotland when I’m due for a fresh batch.
Speaking of being in Scotland, I also got a notice that I have an appointment with Dr. Marback again on December 16. That obviously is not going to happen since I’ll be in Scotland until the 26th. I’ve also got a requisition for another blood test that’s supposed to happen a week before that appointment, and that’s also not going to happen.
Fuck this is boring. I hope nobody is actually reading this.
Oh yes, I also got a notice that I’m scheduled for a bone scan at the department of nuclear medicine on February 13. At least that one should be possible. This is the first time I’ve felt like there’s a significant wait for any test, but I suppose they don’t expect my condition to be changing rapidly, and even if it is there’s little they can do about it. So a three month wait for a bone scan is not unreasonable.
Oh, the good news. After the resumption of hormone therapy following the PET scan results, my PSA level has dropped from 23 down to 9. That’s quite an improvement.