Castle/Cemetery/Fiddle Tunes tour of Scotland


I have been playing “Calum’s Road” with my young friend, Kipling, since she was seven years old. She’s twelve now. Her older sister is in medical school in St. Andrews. Her father suggested I go with him to Scotland. So Ruth and I went with Rod and Kipling to join Akela, Kipling’s older sister, and travel to Calum’s Road to play “Calum’s Road”.

So here we are. Playing Calum’s Road on “Calum’s Road

Then I realized that we were staying in Stafford, with Stafford Island just off the coast. So of course we had to play “Hut on Stafford Island”

And of course if you’re going to the Isle of Skye you need to play “Over the Sea to Sky”

And for good measure, here’s “Neil Gow’s Lament for the Death of His Second Wife”

And of course, once we got back to Edinburgh, it had to be “Flowers of Edinburgh” I didn’t realize how cold Kipling was until just now when I looked at the video.

All in all an amazing trip.

Good News I Guess

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.

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.