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.