Post-infusion

Yesterday I went for my first infusion. So far I've tolerated the pill stuff just fine, deep into my second week now, no noticeable change in well-being from the pills. 

At least a vein was found that cooperated with the nurse.  She explained that for contrast dyes, larger needles are needed. This needle was tiny by comparison. She also warmed my hands first, put a small hot gel pack over them and wrapped them in a blanket for a few minutes to get the veins to stick out better. 

Today, I feel like I've been hit by a truck. I'm especially not happy about the left foot gout pain that came roaring back overnight. 

In fact, overnight were many many wake-ups, roll over and settle-back-downs. Not exactly restful. My back is sore and I now have a dry cough, fatigue, sensitive everywhere. Crabby body syndrome. My somatosensory nervous system is wondering how to arrange divorce from me. 

The substance infused was zoledronic acid. I'm told it's to "protect bone cells" from the other chemo. 
Uh-huh.
My bones really do not like it. My GI system doesn't either. This is the exact opposite of a peaceful easy feeling. 

I'm told by googleAI that the first time is usually the worst for sideFX from infusion.  
I remember the first time I ever used whitening strips on my teeth, and how my mouth filled instantly with saliva which I suppose was a protective effort by my somatosensory system. It only happened that one time, that first time. My system got used to them.
I remember my recent cataract surgery, how scary it was, how nervous I was, how it took a LOT of numbing drops before I could not feel my cornea being touched. Then the second eye two weeks later? Piece of cake. Way smoother. 

This was my first infusion, and it's all novel stimuli. Maybe google AI is correct and future infusions won't cause such upheaval.

Lately I've been listening to "Dust in the Wind" over and over. 
"Don't hang on: nothing lasts forever but the earth and sky." 

In about an hour, I'll be getting a phone call from a person from MAiD, a preliminary interview. After that I may just go back to bed. 

Whole new world

It feels so weird, this new bardo I'm in and am trying to adapt to.
This post-diagnosis bardo. 

Here are the bare-bone facts:
1. I have incurable breast cancer. Invasive ductal cells escaped their genetic programming and emigrated to all corners of, what may well have seemed to them a whole planet to conquer, but in fact is just my body.  Incurable. 
2. I do not have any pain or disability, so far. 
3. I'm taking my pills. I'm on my third day of taking them. So far, they have not bothered me. They have not provoked any unwelcome reactions from my sensory nervous system. 

The MRI was 2 days ago, with all those failed attempts to find a vein for an IV that wouldn't collapse into uselessness. 
So, yesterday I woke up and noticed a weird red streak that tracked perfectly along some visible veins on my arm.
Uh-oh, what's this? This is what I mean by "whole new world." How do I know it if's some sort of existentially important sign or not? 
At least it didn't hurt. 

It zigzagged up the inside of my forearm from the IV site near the wrist, and stopped just above the elbow crease. I marked my skin with a ballpoint pen where the end of the streak was. I watched it for a little while. I thought, if it goes past here, that makes it more salient. I googled, "red streak arm after IV for MRI," or something, and got back advice to get medical eyeballs on it and don't hesitate. 

So I took my arm in to the ER. 
It was a Sunday morning before 9:00 am.
It wasn't busy. They took me in right away. 
Turned out to be innocuous, so, yay about that. The doctor explained that if it felt hard to palpation it could mean clots, or if it felt tender it could mean serious allergic reaction. Simple redness without the other two aspects, should be gone in a week, that it was not going to kill me any time soon, I could relax.
I figure maybe it meant something in there had not liked the taste of the contrast dye.
I was given an antihistamine pill for the skin redness (because medical people like to feel needed? Maybe? Like they've done an action? Fulfilled a ritual?). 
That was that. 

Today it seems faded. Yay about that. 
I'm learning to discern new but inconsequential stuff. With guidance. I'm such a newbie patient to this medical washing machine. 

The physiological magic of real rapport

A couple days ago I got a call from the hospital in Regina with an appointment time for an MRI, at 7:30 AM. Today. Saturday. 
I was told, do not wear any metal and if you take calcium, stop until after the MRI is done. 
Long story short, I just got home.
Six hours of my life, including driving time, that I'll never get back. 

OK, longer story is this:

Regina is about an hour's drive away. So I filled the gas tank last night, got up at 5:15 AM, left home about 6AM, got to the hospital. It has changed so much since I worked there in the 1970's. It's humongous. I saw that the apartment block I used to live in out front was replaced by a very imposing medical building of some kind. There are no trees anymore. 
I drove all around, found paid parking, selected 3 hours, because who knows how long things are going to take these days.
I went in, wandered around looking for the MRI department, finally found it. Got processed. 

The MRI turned out to be just for the leg, not my entire physicality, so that was good... my head stayed outside the noisy tube.  I was given earplugs, and earphones. They said, you can listen to music if you like. What kind would you like? 
Oscar Peterson, I replied. 

What happened just before then, though, pulled the rug out from under my emotional containment system. 

They had to put in an IV. Something about taking scans, then injecting a contrast dye, then taking more scans. No biggie, I've been having tests that involve IVs, a bone scan, a CT scan. There were never any issues. 
This time, there were problems with collapsing veins. Three nurses poked me 7 or 8 times, including in my foot, and got nowhere. Finally they called the ER for someone there to come up and try. 

The nurse from the ER tried a few more times, and finally succeeded on the third try. Found a vein that didn't collapse.
But the backstory is how she was as a rapport-building human primate social groomer. She could see I was getting a bit decompensated about it all. She spent time, patting my arms, pulling the skin this way and that. When she applied the tourniquet, she slowed herself down so she didn't overshoot and make it unnecessarily tight. My arms were already sore from all the tourniquet-ing, and she seemed to understand that. She asked questions. The favourite question they all had was, Are you on blood thinners? I thought maybe I should devise a sign to stick on my forehead, "I am not on blood thinners," to save people having to constantly ask. But she seemed to want more. And as she patted my arm kindly, she extracted from me that this was all new, this whole being a patient business, and that I was tired of it already, and wanted MAiD.
Now, right here is where she showed me that she felt me, got me, supported my locus of control. So much that I got emotional, just from the relief of being seen and feeling heard. 
Yes, she said, if you start now, get in their sights, they can help you when the right time comes. 

She was so kind. 
Then she finally found something she was confident would take an IV needle, and just like that, she was in, taped things down securely, and I was all set for the scan. 
Was it her being patient and interactive? Was it my system finally letting go and letting her in? 
I don't know. All I know is I could feel her, feeling me, where I had not been able to feel the other three who tried to find a cooperative vein. 

Thanks for your opinion, AI.

I mentioned my hesitations about taking cancer drugs, Ribociclib (for which I will have to sacrifice grapefruit juice, which I love), Zoledronic acid (which sucks off excess calcification caused by cancer but can cause osteoporosis, so be careful), and Anastrozole, which could bring on all the thermoregulatory upheaval of menopause for a second round. 

I still have those hesitations, but before making any hasty decision about to take or not to take,  I needed some actual timelines, ballpark though they might be. 
So I asked google with its built-in AI to help. I asked, what is the life expectancy of a 75 year-old female with breast cancer with mets who is taking (the three drugs mentioned above), versus her life expectancy without them? 
The answer was,
with, around 5 years,
without, about 6 months.
Something like that. 

Imagine a pilot flying in fog whose instrument panel isn't functioning and info is scant, and a plane to land.
So, do you want a short runway you're coming up on fast and can't see easily? ... or do you want a runway that goes on for another 5 years? 
Even if the pilot is tired of flying, they will probably take the longer option, with less stress in the moment. More time to adapt to the inevitable.
A longer bardo between, 1. being diagnosed, and, 2. experiencing the end of existence that the diagnosis points to. 

About locus of control, I can always deploy mine if something goes sideways and I really don't want to live with some side effect or inconvenience. 

 

Locus of Control, big time

I mentioned to a couple physios I know about writing a memoir maybe, titled "Locus of Control: The Most Important Illusion." They approved. 

It is all I've got anymore.
Really, I understand that nature is everything and that I rest in it and always have, and that Indigenous people are totally right about how there is no division between nature and us, that nature is sacred, that every rock, tree, pond, mountain, animal and human is part of nature and therefore sacred, that "sacred" is interchangeable with anything that physically exists that nature made all by itself. 

I remember feeling a weird sense of relief when I first heard that during a retreat on one of those BC gulf islands, from Leonard George, son of Dan George the actor. He taught a workshop on native spirituality. "Prior to contact, Turtle Island [the name they give North America] was governed by spirituality," and for the next three days explained what it was all about. If a rock was sacred, I could be too. The white (agri)culture I had grown up in had taught me I was not. Not unless I followed a bunch of rules and held beliefs that I just could not ever stomach, even as a child.   

I have read widely and agree that a sense of self is an illusion, a mirage, a verb more than a noun. More a firing pattern of brain neurons more than an actual "thing." If it is anywhere, I think it would be mostly a left hemisphere illusion. The left hemisphere is the side of the brain that makes stuff up and wants to pretend it's true. It's the side that operates the right hand and right visual field. It's the side that can talk. 

OK, so given that self is an illusion, and given that a sense of self includes a sense of agency, we spend most of our early adult life finding it, honing it, growing it, learning the necessary boundaries, personal and social, and in my case therapeutic, that will keep us out of trouble and moving along to the end of a lifespan.
I did not learn the term "locus of control" until maybe a few decades ago. It became a well-known term, maybe well-worn also, by a decade or so ago, as it moved beyond psychotherapy circles and into other circles, like the one I chose to inhabit, a pain science circle comprised mostly of (mostly) manual therapists of various stripes. 
My own personal locus of control felt seen and included there. 

In other news, I got a call today from a person to let me know that the oncologist wants me to have a bone density scan a few weeks from now. I will go get it. I have traffic-in-big-city driving agency again now that my cataracts are history. My locus of control feels soooooo much better these days, with its vision restored. 

Post-diagnosis bardo

I needed a word for that slice of time between diagnosis and death, a waiting room kind of word,  a word that can be explicit, a word, preferably in French, that lies between "c'est la vie" (pre-diagnosis) and "c'est la mort" (when the diagnosis takes effect).  

A diagnosis is when an official bone-pointer (like an oncologist) points the bone at you, psychosocially.  

Couldn't find a French word for this psychosocial waiting room. 

I remembered the word "bardo" from Tibetan Buddhism, all the stages that people supposedly go through before rebirth, if you believe in that kind of thing.
(Which I don't. Please spare me having to come back for any reason. I've been preparing my whole life to have no unfinished business with existence.) 

Anyway, the word "bardo" surfaced in my brain as I pictured myself sitting in an existential waiting room. Apparently, it can "be interpreted as any transitional experience, any state that lies between two other states." So says Wikipedia.
That is convenient. Hopefully it's not cultural appropriation to use this word. Hopefully Tibet is cool with this interpretation. 

If the two states at each end of existence are both non-existence, then existence itself is a bardo. Right? Maybe nonexistence is the usual state of affairs. I know I won't really mind going back to stardust, the way I was before I was born.  

I do not want mess, or fuss, or memorial, or funeral, or "celebration of life," that way too exuberant term for something so natural and final. I want nothing. Just a way out that doesn't hurt and that I can sort of manage. Loss of dignity is my greatest... I won't call it "fear," I would call it, that possibility about which I feel most aversive. 

When I was at the appointment with the oncologist last week, I brought up the topic of MAiD, and he seemed to recoil. Too soon maybe? I pointed out that I felt reassured by the thought. He wasn't listening. He was doing what felt to me like a schtick about how I could live "for years" with the meds he wanted to prescribe me.  At the moment I am staving off the urge to inform myself about them,  Ribociclib, Zoledronic acid, Anastrozole. 

So far I've just glanced over the handouts, mere toe-dipping. With Ribociclib I would have to give up drinking grapefruit juice, which I love. 
Zoledronic acid has osteoporosis as a side effect. I do not want or need the worry that my bones, spinal bones, any bones, could collapse while I'm still alive. 
Anastrozole is for breast cancer that is making the body make estrogen outside the ovaries. As in, post-menopausal production of estrogen, which at age 75 is me for sure.  The handout says it's well tolerated, serious side effects are rare, but at the appointment he said I could end up going through menopause a second time, and honestly, once through that particular bardo is enough for me. 
I got through it in the late 1980s, early 90s, but only with a solid intense round of Jungian therapy with a therapist who never flinched. Why? Because I couldn't stop crying and it was embarrassing and it went on for months. I did not medicalize menopause at the time. I never took hormone replacement or supplements or anything. I squirted myself with cool water to cool down hot flashes. I simply waited in the bardo of it, with a therapist who wanted to know all about my dreams, until things changed by themselves and I had a postmenopausal life I could enjoy again. 

I think I'll find out time lines. I mean, what's the timeline for the post-diagnosis bardo with the meds? What is the timeline without them? Because right now I still feel just fine. 

I really do not have any pressing reason to continue existing. I have no descendants. I've done my best and worst in these 75 years. I'm not beholden to anyone for anything much. I'm not anti-social, I would describe myself more as a-social in this town. I have no pressing financial worries or obligations. I'm retired with no lofty projects to complete. I've been enjoying the life of a hermit, actually, since covid came along and pandemic restrictions knocked me off my stride in 2020. 

Furthermore I do not want or need psychosocial, psycho-spheric pressure of any kind on me. I have been building my own autonomy, my own sovereignty, all my life, and it's my life, dammit, cancer or no cancer. I think I have every right to be comfortable and not inconvenienced in whatever might be left of it.  

Time for catch-up

I see I haven't blogged since Feb 2025. 
What is that? Sixteen or 17 months ago? 

Let's see:
I still am moving about.
I am still volitionally using my human anti-gravity suit to do that with, and it still feels quite good, healthy, not hurting anywhere.  
This is still my blog. 

A lot has happened since Feb 2025, most of it in just the past 6 months. 
I think I stopped feeling motivated to write here as my cataracts got worse. It seemed like just too much work to look at words. 
Long story short, I sort of vegetated when that happened. I could still see videos if I sat close enough to my monitor, and games on my iPad, so I did that, and time passed. 
Then things started getting busier at the beginning of November '25 when my mother, at age 101, started to decline, fairly rapidly, and died in Feb this year. I was called upon to be involved for this or that task, or phone call to ask for a hospital bed for her at the senior lodge where she was put on a more medically sensitive level of care, or permission for this or that med. 
I did not see well, but enough to still be able to drive, as long as it was daytime and only locally, a few blocks on well-memorized routes in a quiet little prairie city. 
Anyway, I didn't find a lump until a week or so into Feb, then she died, then we three siblings congregated to deal with her death and all its attendant paperwork and appointments for this and that, and cleaning out her room at the lodge. 
I got an appointment in early March and a referral to a mammogram clinic in a large city about an hour away. Meanwhile I couldn't get in for an eye appointment until April. So I had to lean on my brother and a cousin for rides, first for a mammogram, then a biopsy, then an appointment with a surgeon.
Along the way I finally was referred for cataract surgery, first one eye and then the other two weeks later, but that did not happen until June. The good news is, I can see like I'm 5 years old again, perfectly. It's amazing Star Trek stuff, cataract surgery these days. 
The not so good news is that the surgery was canceled because this invasive ductal cell cancer had found a lymph gland it could hijack and demand passage through and get it or else just slip through unnoticed. So while I was distracted by all the family commotion, it had crept around and found lots of little places  everywhere to grow itself. 
These days around here, women with breast cancer are vetted for if surgery will do them any good or not. The cancer agency wants people in my cohort, maybe demographic cohort, to have a CT scan or bone scan or both, first. These are to detect any metastasis. 
In my case, surgery won't make a dint. Neither will chemo or radiotherapy. Incurable. 
It's in lungs liver spine and (bizarrely) right tibia. 
There are some SlowDownTheInevitable pills I can take. I suppose I'll probably take them. 
I have yet to look them up to see what they are all about. 
Before they can be prescribed the oncologist told me he wanted an ECG, an x-ray of the tibia, and to get a dental exam, so he could monitor dosage or whatever. Something about wanting to avoid osteoporosis. 
I did those three things. I saw him on Monday, the 6th of July, and by Wednesday the 8th, they were done. I presume they have the results by now.
I expect a call from his office or else the pharmacy soon. 

Here are the thoughts at the top of my mind. 
I am 75 years old.
I'm done with my former work life and have decluttered my mind a lot around physio, both physio as a profession and myself as one of its global representatives, a farm kid from Sask. who was a boomer and for whom possibilities and opportunities opened up almost magically at just the right times, including a physio school that opened in my province just three years before I applied. 
I feel lucky in life. 
Nowadays I also feel lucky in that I don't have to pay medical expenses, and the system is stepping up to look after me. 

My personal beliefs about existence is that it's a something, like a slice of meat, sandwiched between bun halves of very thick non-existence. I really don't have any issue with going back to the way I was before I was born.
It's all in the hands of nature.
And really, it always has been, all along. 

So, what am I going to do here? In this blog? 
Good question, I do not know. 
Write stuff I guess.