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’m not going to name names in this piece. Well, maybe one name. He deserves it.
Years ago, back when I was a working journeyman director, I was talking to the guest star of a show I was shooting. He had a short career as an A list actor and a much longer career as a B list actor. He told me that he had been in so many movies where he was killed that he made a whole show real of himself being killed. Being shot. Stabbed. Electrocuted. Dying by fire. He had a second, separate show reel of himself killing somebody. Shooting them. Stabbing them. Throwing them out of a helicopter.
I liked him a lot. He’d done the circuit, by which I mean the path so many actors who “make it” go down. He may even have been the guy who described that path to me. It goes like this: A newcomer to the acting trade spends a long time being abused, humiliated, and treated like disposable furniture. Hundreds of auditions with no call backs. Hundreds of auditions with call backs but no part. Then one or two small parts where he/she is treated like crap. And finally the big break. Finally they are recognized for their talent and ability. Finally the TV ratings or the box office depend on their name on the credits. And that’s great for a while. But then they start to remember all the times they were treated like crap. The long hours and the constant stress starts to wear on them. Now it’s payback time. Now it’s their turn to make demands, to refuse to come out of the trailer if that asshole AD isn’t fired. Why can’t they have their own motor home? Their own personal assistant? Pretty soon everybody from the producer on down the list hates their guts. But they don’t really see it. Isn’t this what they deserve? Isn’t this how the star behaves. And there isn’t a show without me, so stop arguing and give me what I want.
Then finally the show ends, as all shows do sooner or later, not infrequently because of the star’s behavior. But that’s okay. They’ve put some money aside. They can enjoy a break. They are still a star. For a while. But after a year with no offers pouring in, they start calling their agent, the agent who made a fortune off them when they were working. Why the fuck can’t you get me a job? I need to work. And the agent who put up with them during the times they were being difficult? Now it’s payback time for him. You know why I can’t get you a job? It’s because everybody hates you. Do you know why everybody hates you? Because you are an asshole who can’t even get an agent in this town.
What? Are you saying you’re not my agent?
That’s exactly what I’m saying. Stop calling me. Go find yourself an agent dumb enough to take you on. You are what they call Hollywood poison. Now get the fuck out of my office.
So the former big shot star spends three, four, five years trying to outlive his reputation. They go to parties. They are nice to everybody. They are ever so humble. And finally, fucking finally, they get another break. Maybe Quentin puts them in one of his quirky moves. They are back on top. And oh boy, are they ever a joy to work with.
The actor who told me this story had been through this, maybe more than once. I really enjoyed working with him.
But here’s the point I’m getting to. The script we were shooting called for him to be surprised and threatened with a gun. He told me he had played this scene dozens of times, and had always wondered what his reaction would be if it happened to him in real life. Then it happened in real life. He said he never in a million years could have predicted his reaction, how he would play the scene in real life.
He said he heard a noise in his Malibu home, came down the stairs, and there was a guy holding a and screaming at him to get down on his knees. He went into immediate hyperventilation. He couldn’t get his breath. He was gasping for air. Terrified. He spent the next hour tied to a chair while the burglar ransacked his home, taking every thing of value and making sure he stayed terrified.
I was excited. That’s amazing, I told him. That’s how you should play the scene. Nobody has ever seen that on television. That’s an honest human reaction. That would be wonderful.
And of course he couldn’t do it. That would be stepping outside of the norms of television. That would be unexpected. The producers, and his audience, would hate that. That wasn’t… That didn’t align with the image. That wasn’t…manly. The audience would laugh. This wasn’t an episode of “Friends” we were shooting.
So he gave me what he was being paid to give me. Television. The television male.
I have spent a lot of time contemplating my career, and trying to figure out why I don’t like television. It finally occurred to me today. This is why. You can’t put honesty on TV. Now that I’ve had this epiphany, I can think of other situations where this was demonstrated to me.
At one point I couldn’t figure out why, every time I was delighted with what I shot, the producers were not delighted. And every time the producers were really happy with the show, I was, at best, muh. Not thrilled. Finally I figured it out. We weren’t trying to make the same thing. I wanted honesty. I wanted art. I wanted to make a show that was special. They wanted television. The two are not the same thing.
Not that wanting television is a bad thing. If that’s what you want. It just wasn’t what I wanted, and it wasn’t what I thought I was doing.
Another incident. I was working with Robert Conrad, preparing for a scene in which he reacts to the belief that his daughters have starved and frozen to death in the Alaskan winter wilderness. I wanted him to cry. To shed an honest tear. He wouldn’t do it.
“The last time I cried on camera my TV Q went down,” he told me. TV Q is a measure of an actor’s popularity with their audience, according to some kind of poll.
I loved Matt LeBlanc’s comment on this: “What’s the matter? Don’t you cry good.”
Robert Conrad, a memorable actor to work with. Searching for this picture I discovered that he died in February of this year. Damn. I am sorry about that.
We drove Spiff, named after Spaceman Spiff in Calvin and Hobbs, off the lot last week. It’s our first all electric vehicle and full of surprises. But before I tell you about it, I want to have a moment of silence for our dear departed Toyota Sienna van, Blando, the best vehicle to date I have ever owned. Just last week I had five heavy 5/8″ 4 X 8 sheets of OSB, three sheets of 4X8 drywall, and three eight foot lengths of drywall corner bead INSIDE my van. It was an amazing workhorse while we did our house renovations. It functioned totally reliably while I pushed the odometer up to 226,000 kilometers. It had great acceleration for highway driving and was a pure pleasure to drive. And it’s gone. Crushed for financial gain. Sob. Spiff will not be able to replace Blando for practical use, and maybe never in my heart. But there you go. Time passes and things change.
I marvel that anybody as currently impecunious as I could be driving a brand new EV. So let’s start with the logic that allowed this to happen. Blando broke a front strut a couple of weeks back, valiantly fighting the rare snow drifts and ice packs of our streets. It was still driveable, but we were facing a $1,500 repair bill on a vehicle with a $1000 trade in value. It had all those aforementioned kilometers on it, and a few minor things were going wrong, like the flashing airbag light on the dash I covered with tape. So I could expect it to nickel and dime us to death from here on. We had been thinking that our next vehicle should be an EV. This seemed like a good time to look into them. We made an appointment to repair Blando, then started checking out EVs at the dealerships, starting with the Toyota Prius (we decided we didn’t want a hybrid. Why include all the complication of an ICE machine with the simplicity of an EV?). Then we tried the Hyundai Kona (we liked it but… no.), and finally the Kia at Harris Auto here in Nanaimo.
We had been thinking we would probably lease our next vehicle. Matt, Harris Auto financial guy, suggested we look at financing. He worked out the numbers, subtracted the $5,000 federal subsidy and the $3,000 provincial subsidy, added in an amazing warranty package, and told us how to apply for the Scrap-it program, for which they still had a few tickets left. Scrap-it is an industry program that pays $6000 for any ICE vehicle that has been insured for six months and is taken off the road, meaning driven into a crusher. It turned out that we could finance our new EV over 96 months, making payments of $208 bi-weekly, which was stretching what we felt we could afford, but still within range. The FOMO of the situation is that the subsidy programs, especially the Scrap-it program, have very limited funds. When the money is gone, there’s no guarantee the funds will be topped up again. There is talk that EVs are over-incentivised. So that was it. Deal.
I should mention that our salesman, Roland Holland, is an incredibly personable and helpful guy. The fact that this would be his first sale, and Ruth would get to cut his tie in half once it was completed, added a lot to the fun.
So here’s the timeline: Ruth heard a horrid kasproinging noise in the van on a Friday. We got a diagnosis on Saturday, and made an appointment for a repair for Tuesday. Checked out the Prius on Saturday and new EVs on Monday, and decided on the Kia Soul EV Monday evening. Called to cancel the repairs to Blando Tuesday morning and drove Spiff off the lot that afternoon. Delivered Blando to the crusher Wednesday morning, with Roland following behind to drive us back into town, then returned to the dealership to cut Roland’s tie in half, which apparently is a thing here. It all happened so fast.
But, okay. What you really want to know is what I think of the new 2020 Kia Soul. So here goes. Spiff seems to be incredibly well made and solid. It has the same feeling of thoughtful design and construction that I liked so much with our old Toyota. It doesn’t have the hauling capacity of Blando, but the trunk space is not bad. Here it is loaded with twenty one boxes of laminate flooring, four rolls of cork underlay, and a couple of lenghts of drywall bead. Not bad for a little car.
The learning curve to get used to driving an EV hasn’t been bad at all. The pleasures of the new experience have been many.
Let’s start with the most unexpected pleasant surprise. I absolutely love not having to put a key in the ignition. That seems like such a small thing, but it really isn’t. I unlock the door with the fob and put the fob in my pocket. Then I get in, put my foot on the brake and push a button to boot up the system, turn the big nob to drive. And I’m away. One of the greatest improvements in automobile technology has been the remote door lock. It’s hard to believe we used to walk around the car locking, or unlocking, each door. This takes the remote lock one step further, and it’s a big deal for me.
If I want to get nostalgic, I could lament the loss of the girlfriend test. Do you remember that one? The idea was you picked the girl up for your first date, unlocked her door, waited until she was seated, then closed her door. If your door wasn’t unlocked by the time you walked around the car, that would be the last date. But I digress.
There are a few things I love about modern cars. Remote door locks top the list. Electric controls for side mirrors comes next. Power windows would be third, then cruise control. And going way back I suppose I should list power steering and power brakes and automatic transmission. (I remember my father buying his first automatic transmission way back in the fifties, and complaining about having a foot he didn’t know what to do with.) Then there are the frills like heated seats and a heated steering wheel. All these things we take for granted, and the new Kia Soul takes them one step further.
Take cruise control as an example. The Kia Soul takes this to the edge of being an auto pilot. If the car ahead of you is doing seventy, and you have cruise set for 90, you slow down as you catch up. If the car ahead stops at a red light, you gently stop behind it and only need to touch the + sign on the steering wheel to start coming back up to speed as the car ahead moves again. On a clear day with the lines visible, the cruise control, or maybe it’s the driver assist, will give a tug on the wheel if you wander out of your lane. It will even take you around a curve. It doesn’t do that smoothly, but it does it.
Just a couple of things more to mention. The first is silence. Start up the system and it is silent, so silent that using the rear wiper seems loud. Then there’s acceleration. Step on the accelerator (not the gas, there is no gas) and you get instant smooth acceleration. Lots of it. Pin you to the seat acceleration. And then my favourite feature when it comes to driving – regenerative braking. You can set that to a level from zero, which means you just cruise down a hill like you normally would, to maximum which means the car noticeably starts to slow when you take your foot off the accelerator. I set it at maximum and drive without touching the brakes. Pretty much ever. The regenerative braking puts the energy of momentum back into the battery. It’s set with paddles conveniently placed on the steering wheel, and pulling and holding the one on the left will bring the car to a complete stop. Of course this means that my brakes should last forever.
For a couple of years now, the big name in EV has been Tesla, and it still has the status, plus a price tag twenty grand or more higher than the Kia. But I find the Tesla quite conventional looking, by comparison, and I think the big touch screen monitor protruding well out from the dash is downright ugly. Also, as Ruth has mentioned many times, a touch screen is a bad idea when you are driving. We want buttons, conveniently placed and activated by feel. I don’t know how much of the Tesla controls can be activated by feel, or voice control, but the emphasis seems to be on that big, ugly touch screen. So the way I’m feeling right now, I wouldn’t trade. Not even if you threw in the twenty grand.
Final word: We liked the folks at Harris Auto. We got a lot of attention from Roland Holland, our salesman. Matt made the number work for us. And the car itself is just a total blast to drive. We did find some aspects of the navigation system counter intuitive, but nothing that familiarity won’t fix. So…happy campers here. If you want to check out the Kia Soul EV at Harris Auto in Nanaimo, tell Roland that Zale sent you.
UPDATE: February 2 2020 finally found something to complain about. The rear view mirror has buttons under it. One summons roadside assistance. The other is for emergencies. Not sure what the third is for. Anyway, I have to adjust that mirror every time Ruth drives the car. Yesterday I accidentally hit the roadside assistance button. The call went out, and I couldn’t cancel it. I tried hanging up the phone, with the button on the steering wheel for that purpose. It ignored me. Maybe if i had pushed the button on the rear view mirror again instead it might have cancelled. But I tried a few things and then just waited for somebody to answer, explained the situations, and had THEM hang up. Not a big deal really, but very strange. And the first thing about the car I didn’t like. That is a very strange place to put buttons calling for assistance. Bad choice, really. It seems the designers assumed that only one person, of only one height, would be driving the car
UPDATE 2: And this one is NOT A COMPLAINT. I was delighted when we dropped in to Harris Auto with a few questions and Matt showed me this feature. Pushing the button on the door handle opens the locks as long as I have the fob in my pocket. This means I never have to take the fob out of my pocket unless I forget to lock the car and want to lock it from inside the house. Push the button. Get in. Foot on the brake. Push the power up button. Rotate the big nob to put it in gear and drive away. It may seem like a small thing, but to me it isn’t. It means no fumbling around in my over stuffed pocket trying to find the fob to get into the car.
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”. I didn’t realize how famous this tune is until I talked to a Scots lass in an hostello in Milan. She told me they play the tune at all the dances now. Calum was a fellow who wanted a road to his village. When the county wouldn’t pay for it, he got some books on engineering, a pick and a shovel, and went to work. Years later the road is behind us here and inspired this tune.
So here we are. Playing Calum’s Road on “Calum’s Road
Then I realized that we were staying in Staffin, with Staffin Island just off the coast. So of course we had to play “Hut on Staffin 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.
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.
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.
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 hearted? 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.