What’s Happening on Planet Zale

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. The rehearsal was followed by a drive to Qualicum Beach to play with the Oceanside Jammers, my fiddle group.
  6. 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.

Now I’m Growing Tits?

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.

Fuck.


My Life is About Having Cancer Now

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.

Update on Cancer and Treatment

Aberaterone acetate. Looks simple enough, eh

Things are happening, though a little slowly.* I have been seeing Dr. Atwell at the Victoria Cancer Center. But this week I got a call from a nice lady named Susan who told me that Dr. Atwell has referred me to another oncologist in Nanaimo, Dr. Randy Marback. So next Monday I’ll show up at Life Labs at 8:30 in the morning to give another blood sample and on Wednesday at 2:10 in the afternoon I’ll report to the Ambulatory Care entrance of the Nanaimo General Hospital for an appointment with the man himself.

Apparently I’m to be given a new drug, aberaterone acetate, delivered straight from the manufacturer. Dr. Atwell tells me that it would cost $3,000/month but because it hasn’t been officially released yet in Canaada the company will provide it for free. Whew.

It’s good that I will have an oncologist to talk to locally. I have questions. Going over my notes from my meeting with Dr. Atwell I see that he gives me 2 to 3 years (????) with no treatment and 5 to 7 years with treatment. Right now the cancer is turning me into a hypochondriac. Every ache and pain which is most likely just a result of old age now sets off alarms. Is this how it starts? Is this a first symptom. Maybe I can get some answers.

*Okay, not all that slowly. I saw Dr. Atwell on October 25 and I will see Dr. Marback on November 20. I think waiting less than a month to see a cancer specialist is not terrible. Let it be known that I’m again grateful for the Canadian health care system.

I Had a Thought

With Black Lives Matter and the pushback to that campaign, plus the police murders of black men and the murders of police in retaliation, race relations are very much on my mind these days.

And I had a thought.  You know how the colour black is so often used as a negative – black hearted, black mood, blackmail, etc.  Well, I think it’s time we all stopped doing that and I’m going to try.

In China we called the unlicensed taxis that waited outside our gate “black taxis”.  This is not accurate.  Some of them were indeed black.  But really they were unlicensed.  That’s what we should have called them.

Black heated?  Do you really mean evil?  Nasty?

Black mood? Are you talking about depression?

Blackmail?  Isn’t that extortion?

I think anybody with a descent vocabulary can find ways of describing the world without giving it a colour that is offensive to so many people.  I’m going to start.

The PET scan and the Oncologist Meeting

Now here’s something you never want to see on a PET scan.

This is a still from my PET scan looking at a cross section across my pelvis.

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.

Ruth and I had a long conversation with Dr. Atwell, my new oncologist to whom I was referred by Dr. Pai, the radiologist. I wanted to know what comes next. What symptoms should I expect. When should I start to see them. And most of all, how long before this kills me.

Dr. Atwell was very comforting. He said he expects me to live for several years, with treatment. He said I will probably die of something else. He said he’s going to put me on a new drug that would normally cost $3000/month but because of some ongoing review process I will get it for free.

“I have no interest in spending the last years of my life being miserably sick,” I told him.

“I have no interest in making you miserably sick,” he replied.

He said I will probably have a better quality of life with treatment than without. So for now, I’m accepting treatment.

After Dr. Atwell finished talking to me, he left and a nurse came in to enroll me in a study that involves giving samples of blood so they can do a genetic analysis. She gave me a kit with three test tubes in it and told me to take it to the lab before my treatment starts.

Then a nurse came in to stick a needle in my buttocks to inject a drug that will shut down my testosterone. The needle didn’t hurt, but it left me with a bruised feeling right cheek.


Things Start to Sound Terminal

I saw my family doctor this morning. I have all kinds of doctors now – a bone doctor for my knee replacement, a hand doctor for my thumb and arthritis, and two different oncologists for my cancer. But this morning it was my family doctor.

He registered me for palliative care, so that I will get any pain meds I need at no cost and will have access to a palliative care councilor.

He also got me to sign a No Cardio Pulmonary resuscitation order. So now if I have a heart attack they will just let me lie there? I guess so. As my doctor put it, “You don’t want to end up in ICU in an iron lung.” And I sure don’t.

Meanwhile, life goes on, for now. I bought a Rigid oscillating belt/spindle sander yesterday. I’m introducing Ruth to my wood working tools, so she’ll be able to use them if she wants to make changes to anything after I’m gone. Also yesterday, I showed her how to change and adjust the blade on my band saw. She’s going to make a bandsaw box under my instruction. That’s where the spindle sander will come into use. Next up, a lesson in using the router and router table so she’ll be able to make all of the moldings and trims that are still needed in our renovations. I have no idea whether she will actually do this after I’m dead, and I guess I will never know. But she wants to know how.

And wow. I finally found the hidden icon that lets me upload an image. Woot woot. Still angry with the nerds who keep changing my programs on me, but this feels good. This is a recent photo taken at the Port Theatre Fundraising Gala. Now that was a good night.

Planning for a Short Future

There is an upside to dying. It certainly concentrates the mind.

Telling my friends Rod and Chao the news was hard. Rod immediately rushed out of the room, returning with a three hundred dollar bottle of scotch. He poured me a shot, and said I should take the bottle home with me. I declined, telling him I’d return and drink it with him.

When their daughter, Kipling, joined us in the kitchen, she took one look at our faces and wanted to know that was going on. Kipling and I have been playing the fiddle together on occasion since she was seven, though she’s been concentrating on classical studies. She’s now twelve, and a very accomplished violinist
I’ve always been very careful not to pressure Kipling to play with me. She gets enough pressure from her parents. She’s a very reserved young lady, and I’ve never even been sure that she even likes me. But when she got the news she completely broke down. She came over to me and hugged me, sobbing. After she calmed down, we played “Calum’s Road” and the “Oopik Walts” together. I have decided that Kipling is next in line to own my Italian violin. The next day she ran in the Terry Fox run with “I’m running for Zale” on her shirt.

Rod asked me if I want to go to Scotland with him. He goes there frequently to visit their older daughter, Akela, who is studying medicine in Edinburgh.

So now we’re planning a trip to Scotland. Kipling and I are going to play “Calum’s Road” on https://www.atlasobscura.com/places/calums-roadCalum’s Road. I’m some kind of excited.

Okay, Time to Calm Down

I just had a telephone conversation with Dr. Pai, my oncologist. I asked him just how seriously I should take this earth shaking diagnosis. His response: with the recent improvements in treatment you should have a year at the very least, and you could have, oh, five years or more.

At the moment I’m symptom free and feeling just fine. So it’s not time to ask for Medical Assistance in Dying. Not just yet.

I did a Google on the rules currently in place for getting MAID. The more I read, the more annoyed I got. There are procedures that must be followed, including deciding ten days in advance when you want to kick off.

I’ve always had a problem with authority. Having to ask a medical/government authority for permission to off myself just sticks in my craw.

I understand that we don’t want anybody planting gramma for the inheritance, but the rules shouldn’t apply to me. Damn it.

I expected my dominant emotion around this issue to be fear. I’m surprised that isn’t the case. My dominant emotion is gratitude at having had an opportunity to experience this amazing reality. We’ve seen such incredible changes in science and technology in my lifetime. Also social changes that have pretty much been for the better.

When I was a child, there was no women’s rights. A woman couldn’t get a credit card or open a bank account without her husband’s permission. There was no gay pride or gay rights. A black man couldn’t drink from the courthouse fountain, much less occupy the White House and give us eight scandal free years as a role model for all humanity.
Sure, some things were more fun – riding in the back of the pickup truck. Drinking from the garden hose. But we also had duck and cover constant threat of nuclear annihilation. Okay, we still have that. Plus climate change and looming extinction. I’m just trying to say I’ve seen some great improvements. I hope I live to see a few more, and it sounds like I might.

My own Me Too

Lately I’ve been posting obituaries and eulogies for people I’ve worked with, people I’ve known, friends in the film business who have died. All the time, thinking my turn is coming up

And now it’s here. I had a PET scan yesterday because my PSA (Prostate Specific Antigen) level is high and has been climbing. It was supposed to drop after my prostate cancer treatment – hormone therapy, radiation therapy, and brachytherapy (the implanting of radioactive seeds in my prostate) – and it hasn’t. It’s been going up, which meant that the prostate cancer is active someplace. Hence the PET scan.

The PET scan involves the injection of a radioactive soup that will only stick to prostate cancer cells. That’s amazing. Unfortunately it revealed a whole bunch of cancer cells in my lymph nodes running from my groin up into my chest area. Worse, it revealed cancer in the bones of my hips.

I got the call from my oncologist this afternoon. He tried to put a positive spin on things, emphasizing the improvements to treatment that have been made recently. But I know what this really means.

The party is over. I am dying.

Damn, eh. Just when the world is getting really interesting.

That was written on Friday, September 27, 2019. I didn’t post it then because I wasn’t sure I was going to go public. But there’s been a lot of processing since then, a lot of hugging my wife and seeing friends break down in tears, and talking about what comes next. It’s now Wednesday, October 2. I have decided to let it all hang out. Why not. This is a process not everybody will get to go through. For many people, death will come as a big surprise – an accident, an embolism, a suddenly exploding heart. They will barely have time to think about it before they stop thinking about anything.

I have the privilege of contemplating my situation. This is not something I thought I would want to do. I liked what Woody Allen said about dying: “I just don’t want to be there when it happens.” But now that I’m into this, I’m finding it interesting, almost fun. It’s so intense. The emotions are so vivid, both in myself and in my friends. So I’m going to blog this. It doesn’t really matter to me whether anybody reads it. But if this is the last experience I’m going to have, blogging it will make me think about it. Hopefully honestly. Realistically. Maybe even bravely.

On Saturday I contacted my sisters to let them know what’s happening. They are so solid. They love me, and are very sad to hear the news. But they also understand and accept that this happens to everybody and will happen to them. As my older sister put it, “When the party is over, I don’t want to hang around.” So nobody is arguing with my decision to ask for Medical Aid in Dying.

I also started contacting old friends and former lovers. Here’s my letter to Bonni:
“Hi Bonni:
I wrote to you back in July but have had no response.  I’m starting to feel like a stalker.  I hope everything is okay with you.
I mentioned in my last message that my PSA level (Prostate Specific Antigen) remained high and rising after my prostate cancer treatment.  Not a good sign.  Well, it gets worse.
On Thursday last week I went to Vancouver for a PET scan.  That involves being injected with radioactive soup that will bind only to prostate cancer cells, and the being slid into a big metal donut with flashing lights.  Yesterday I got a call from my oncologist.  Bad news.  My cancer has metastasized into my lymph glands from my pelvis all the way up into my chest.  That might have been treatable, but it has also gone into the bones of my pelvis.  That means I’m a gonner.  Terminal.
Right now I feel fine.  I’d never know I was dying if it weren’t for the doctors telling me about it.  I may get a couple of good years before things get bad, and then they will get really bad.  I don’t think I will hang around to see how bad things can get.
So, Bonni.  Sorry to be laying this on you, but I thought you would want to know. If you have anything you want to say to me, now would be a good time.
Please write and tell me how things are in your life.
Love
Big David AKA Zale

I was relieved to get this immediate response:

” My Dearest Big David
I am so sad to hear this ‘report’.I can really only ‘imagine’ how you are ‘feeling’.
Actuarially speaking, I know I’m at that point in lifeWhere it really is Any Day NowNot just the kind of Carlos Casteneda thing with Death on your shoulder watching all the time.
I am sorry I haven’t responded since your July email.Did I at least get right back to you to say ‘later’?I usually do before I put it on my ‘later’ list.  lol
But Life has been  very full lately.Epiphanies, Lessons Learned, Red Flags, Principles and Priorities etc. etc.I am very grateful for the opportunities I’m having these days to at last be able to face some of these and make sense of them.
This is one of those ‘short’ contacts with the promise to get back to you.But this promise is ‘sooner rather than later’.I have much I want to say and share with you.
Right now, I’m just getting food ready for Lloyd’s visit this afternoon,And at the same time, dinner for my Japanese student later in the evening!Yes Busy.   But it’s a good busy.   Focussed and Calm I would say…:)
Till later,Take careMuch Love to you
Bonni

Since then I’ve had several exchanges with Bonni. My imminent departure has certainly stimulated our correspondence. I won’t post all of those message. Suffice it to say that it’s really good to get our feeling for each out out in the open. Bonni and I were lovers for some years when I was working in Toronto while living in Gibsons. I remember being serenely contented, being with Bonni and her daughter, who became like another daughter for me. That went away when we both realized there was no future in the relationship. I think Bonni started to resent the fact that I was committed to my wife and children back home. She and her daughter would never be my primary relationship. So things stopped being fun and we stopped sleeping together. But I will always love her, and have tried to keep in touch.

Dear Zale and Ruth,

   We just learned of your serious cancer diagnosis Zale and were shocked and saddened that this has been handed to you.  Words kind of fail us at this point.  I cannot believe that a man larger than Life and so generous with his Life and heart with everyone he connects with has to endure such a serious diagnosis.  I am so very sorry.

   Hugh and I both have been sending little bursts of Love and care to you both ever since we got the news.  We have you both in our hearts big time.

    I hope there is some treatment that can bring you some relief Zale and if there is anything we can do for you both, please let us know.

     We are thinking of you and hope that our caring and commitment to support you both through whatever this journey involves, helps a little to ease stepping into such vulnerable, uncharted territory.

    Our Love and warm hugs to you both,

            Anne and Hugh

Dear Anne and Hugh

Thank you so much for your kind words and thoughts.

Ruth and I have been on what we call our “crying tour” since getting the diagnosis.  It’s been hard watching the sadness overwhelm our friends, and I’m beginning to feel like a drama queen because this all feels unreal.  I have no symptoms at the moment and feel quite fine.  Meanwhile, everybody has their own problems they are dealing with, and most don’t need anything additional from me.

For example, Moira Carlson, the wife of my old friend Barry Carlson, got right back to me when she got my email.  But she had returned the day before from the celebration of life for her older sister, a woman who was very health conscious, kept her weight down, ate carefully, and died of a massive heart attack.  She was only two years older than Moira.  So Moira gets home from that to get my news.  Not something she needed.

Here’s Moira’s website.  You should sign up for her sketch a day.  They are amazing.  :  http://www.moiracarlson.com/

On Sunday we went to see our friends Rod and Chao.  They are two of the greatest people I know, just amazing.  They have an amazing family too.  Their daughter, Akela, was recently in Miami for a Judo competition.  She then flew to Beijing for a classical voice competition.  She’s now in Edinburgh studying medicine. Their younger daughter, Kipling, has been my fiddle buddy since she was seven.  She’s now twelve or thirteen, and a very accomplished violinist, though she prefers playing classical and we don’t get to fiddle together very often.

I gave my news to Kipling’s mom and dad,  Chao and Rod. They both looked devastated.  Rod immediately rushed out of the room and came back with a three hundred dollar bottle of scotch, which he cracked the seal on and poured me a shot, saying I should take the bottle home with me.  I declined.  I will visit them and drink it with him, because it really is exceptional scotch.  Then Kipling, who had just awakened, came into the kitchen.  When she saw the looks on her parents faces she knew something was going on, and she wanted to know.  So I told her.

Up to this point, I’ve never been really sure that Kipling liked me.  She’s a very reserved young lady, and I always felt I was pressuring her to play the fiddle with me.  But when she got my news she just broke down.  She came to me and hugged me, sobbing.  When she calmed down, we got out our fiddles and played “Calum’s Road” and “The Ookpik Waltz” together.  She is just amazing.  She’s the only person I’ve ever met who can learn a tune faster than I  can.

Rod asked me if I wanted to go to Scotland with him.  Of course I’d love to do that, but I’m reluctant to have him spend the money to take me, and I certainly can’t afford the trip.  But then I realized that I want to give Kipling my violin.  It’s a very special instrument, and was quite expensive. I told this to Rod and Chao and they said they want to buy it from me.  I said it’s not for sale, but it makes me feel okay about accepting some scotch I could never afford, and a trip to Scotland. I want to play “Calum’s Road” on Calum’s Road.

Here’s the violin story if you haven’t heard it before.  http://www.zaledalen.com/zaledalen/?p=1640

Here’s the story of Calum’s road:  https://en.wikipedia.org/wiki/Calum_MacLeod_(of_Raasay)

Chao told me that Kipling ran in the Terry Fox Run on Monday.  Here’s what she wore on her shirt:  I’m running for Zale”


Yesterday I picked up a prescription from the cancer pharmacy. My oncologist wants me back on testosterone blockers. I hate that, because the side effects are subtle but nasty. But right now I have no symptoms, and I’d like to keep it that way.

I’m expecting a call from my oncologist and I’m tired of trying to organize my thoughts. If you have anything you want to say to me, now would be a good time. Assuming the comments still work.