Thursday, May 21, 2020

A Geek's Journey Into Brain Cancer: R2



For many people the true crisis of cancer hits when they get through the first course of treatment and try to go on as if life is "back to normal", only to stumble upon the hideous truth that there is no normal.  There is no ground under you.  There is nothing to hang on to, nothing to count on.  You are not in Kansas anymore, and you can never go back.  Do not pass Go, do not click ruby slipper heels together(I hope you expect weird mixed references from me by now).

Anway, here's what you find out: cancer has changed you. 

This hit me all at once during that first phone call.  I knew life was going to change drastically (asteroid strike-drastically) forever.

I've never been one to hang on to the past, to things that no longer serve, to ideas or people that let me down.  I tend to focus on Moving Onward.  I've loved my life more each year as I've aged....pretty much until January.

I still love being alive, of course.  I love my people and seeing spring again.  I love writing and storytelling, which I'm doing as much as I can.

But it will never be what it was.

There's a kind of constant catching up with reality that my brain does through the day; for example, I think long-term health out of habit so I hesitate to take sleeping pills, but my oncologists want me to to get good sleep right now, and for all purposes going forward there IS only right now.

It's a whole new world and you get a whole new self.

R1 (The original version of Robyn/Robbie/Rob) is over and done.  That's the aspect of death that already happened.  I need to move on.

So, especially with all the radio wave contacts and wires taped on my head, I'm going to move ahead anew: I'm R2.

He's a really cute robot.

Friday, May 8, 2020

Coyotes at Midnight, Doves at Dawn

The coyotes started up last night in a racous cascade of joyous yipping; the chorus poured through my open bedroom window on the cool breeze, compounding my goosebumps.  Our dog Sunny growled and groused, which in dog ranslates to "Why, I oughta..."  I was grateful that we keep the cat, Lucille, in at night, a situation she regards as an outrageous oppression of her rights as a hunter and an affront to her very creaturehood.  She stages protests regularly like jumping up on me in bed, padding up and down my body, then jumping down on the floor and sharpening her claws on the edge of the mattress.  If I get out of bed in the midst of a protest she'll grab my ankles as I walk; it's like being attacked by two angry cotton balls, but she's good at tripping me.  So I stay in bed.

I think coyotes are a gift to humans because the part of the brain that sends up the goosebumps is also the part that remembers being prey.  We've been sitting comfortably above the food chain for so long that occcasionally we need to remember what it was like to be a part of the cycles of Nature.

Which cancer also does.  The darker thoughts sometimes start howling in the middle of the night as well, and they can be chilling.

The mourning doves started their insistent song at dawn; the light breeze stirring the fringe of the shawl hung in my bedroom window signal the part of the day in which I have a stack of practices that I dive into:  gratitude, nutrition, meditation, yoga, macha, and metta phrases.  These are all things that accentuate the positive to the exclusion of any dark thoughts.  Like the doves I greet the soft grey light of dawn with these insistent practices.

I haven't yet found the balance where I can just be grateful for each day and stay positive without disciplined effort.  The more I read, the more confused I become.   In Love, Medicine and Miarcles the author sites study after study in which the attitudes of patient had a profound effect upon their health and even comes right out and says, "The truth is: Love heals." In I'll Have It My Way by Hattie Bryant, she ruthlessly tears down the delusions many people have, including the idea that doctors can work magic.  One doctor in the book is quoted as saying, "...much of what we offer patients who have lif-threatening illness is ultimately futile."    This was my view in the ICU (the nineth realm of Hell), where I told the radiation oncologist,  "None of these treatments has kept anyone with this disease alive yet."  She responded by slapping the backs of my hands and telling me to "Not be so negative."  In her defense I was only partly right; surgery, radiation and chemo do extend life, sometimes for a long time, but in most cases ultimately they do not result in years of survival.  I hate being duped or manipulated, including being led around by New Age magical thinking, so at first I clung to the idea of a terminal diagnosis and just tried to get the practical stuff taken care of: dealing with insurance, bills and end-of-life decisions.  It made me feel effective and realistic, even as I grew more and more depressed.  I was not yet launching into positive practices at dawn.

Recently I began hypnotherapy with a gifted, incredibly positive friend; between that and reading Love, Medicine and Miracles I saw how negative I had been, and that the lack of positivity was robbing me of quality of life and possibly even more life.

It's a confusing mix of states of mind, or at least it seems so to me.  It's hard work staying positive.  You have to do the practices and stay on top of your thoughts.  You have to remind yourself over and over again how good you've got it, and that death is normal, we're all headed that way, and just "try to live for each day".  Still, it's not realistic to tell a human being not to think about the future.  It's our species' superpower to plan for the future.  I never want to be in an ICU again, and I don't want to endure another surgery, so I need to plan for that and drag my love ones through brutally difficult talks in which I make my wishes clear, or I could be waking up in the nineth realm of Hell yet again, but with with broken ribs, a permanent tracheotomy, tubes shoved into me for air, hydration, and even (shudder) feeding, paralyzed or partially paralyzed or racked with seizures.

I don't seem to be able to arrive at a stasis with attitude or stance, but I do know both states: dark depression and determined positivity.

Like night and day.

Maybe that's just natural.