Time for a Relapse

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.



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.

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.

As Time Goes By

There are things to really hate about getting old. Of course. What an obvious statement. What a mundane opening sentence. There are things almost too numerous to count to hate about being old. Let’s start with the tendency for old men to talk about their health.

I suppose we can be forgiven. We don’t have much else to talk about. Okay, there’s lots else to talk about, but our health becomes a preoccupation that looms over everything. Our health is the limiting factor on everything else. Our health is an indication that it’s all coming to an end. Whether we like it our not, our health creeps to the front of our mind and escapes through our mouth as a topic of conversation. I don’t have the self discipline to avoid that.

The arthritis in my right thumb has been getting so bad that I’ve all but given up the violin. For a while I thought it would allow me to at least play the piano, and for a while it did. But now, somehow, shooting pains make it hard to do a sensitive interpretation of my Scott Joplin pieces. So just as I start to get them back to performance level, I can’t stand to play them.

Can I curse now. Would that be justified? Excusable? Fuck it. I mean FUCK IT. This does not make me happy.

As part of my cancer treatment, I’ve been taking a testosterone blocker, brand name Erleada (for some reason. Did some marketing guy think that was a better, less confusing name, than it’s generic name?) actual name Apalutamide. This business of giving a drug a brand name, Tylenol instead of Ibuprofen for example, really annoys the hell out of me. It seems to mean they can charge twice as much for the drug because the buyer doesn’t know what it is. But that’s a rant for another day. I take four horse pill sized tablets of Apalutamide at lunch every day. Apalutamide is a testosterone blocker. I’ve been given injections to stop my production of testosterone. The Apalutamide is to mop up any molecules of the hormone that escaped that treatment. It’s very new. It hasn’t yet been approved to be paid for by the B.C. medical services, and it costs, so I’m told, four thousand dollars per month. The company seeking approval for it is giving it to me for free for “compassionate reasons.” Sweet of them. No really. I appreciated it.

Talking to my oncologist a month or so ago, I asked if my worsening arthritis could be a side effect of the reduced testosterone. He suggested I stop for a while and see what happens. So on December 04 I quit it cold turkey.

I was hoping for two things. I was hoping my PSA level would not go up, and I was hoping my arthritis pain would be eased. The latter may have happened but not to any significant extent. Then came my January 4 blood test….

On August 7, my blood test showed a PSA level of 0.12 On January 4 my PSA level was 0.13

Okay. That’s up. Not much. Probably not as much as the margin of error of the blood test. But it’s up. PSA stands for Prostate Specific Antigen. It’s a measure of cancer activity. Up is not good.

Call me a coward, but I’m back on the Apalutamide. I’d rather have arthritis pain and be unable to play the violin than die quicker than I want to. And believe me, I don’t want to.

One thing about metastasized cancer, it has turned me into a hypochondriac. Every little pain is now a warning of things getting worse. I can’t cross my right leg on to my left knee, and must use a devise to put my right sock on my foot. I have pain in both groins. For the past few weeks I’ve had an incredibly stiff neck. How much of the pain is coming from the cancer? How much is coming from the arthritis? How much just goes along with old age? There’s no way to know.

How long do I have? Again, there’s no way to know. I’m hoping for at least one more hunting season. Two or three would be nice. But I don’t know.

I’m truly grateful for the attention from Dr. Olivier, Dr. Pai, Dr. Atwell, Dr. Marback, and most especially Dr. King. Oh, and of course Dr. Fuganaga who is the first half of the assessment team signing me up for Medical Assistance in Dying. I’m more than grateful for my supportive wife who keeps assuring me I’m worth the $3k investment to buy me an implant to replace my missing front tooth. If I were a car with my mileage, needing repairs of that cost, I’d just run the beater into the nearest crusher. But Ruth says I’m not a car. So she’ll put up the bulk of the money to make me look good.

My hockey player look.

My son, Victor, insists that I’m depressed. I have argued with him about it, but am coming to the conclusion that he’s right. I keep looking for a reason to get up in the morning. This morning I couldn’t find one.

But if this is all the time I’ve got left, do I really want to piss it away being mopey? I am looking for the joy. I am looking hard.