A random walk in my mind or the few moments in the mind of the living dead

A day in my inner life includes a hell of a lot of scary stuff. But I’m NOT scared. Well a little. Maybe. Hey, cut me some slack! This is deadly death causing cancer stuff for goddess’s sakes.

How do you feel about the whole question of death?

I’m personally not scared of the concept (read a few of my prior posts on death and dying) After drawing one afternoon and quieting my mind, my amygdala decoded during some of my resting brain activity during which my approximately 10 to the 4 synapses per neuron and 10 to the 11 neurons in my human brain aren’t doing all too much (sure!). Possibly it’s out of a condition I’ve applied to myself – I could already be a ghost! Holy shit! I ghosted myself.

Proving only this to only me: I’m afraid of leaving people to feel sad that I’m gone. Feeling my loss. In some ways they’ve already begun to feel my loss either by purposely losing me or by sending themselves away from me.

What I try not to do is imagine really stupid post mortem self images like me as a ghost. Sometimes I’m watching helplessly as my living beloved attempts to feed himself, which really frightens me for all really stupid reasons, like: God, can he remember how to even put the spoon in the right orifice? Get the fried rice out of your ears! Put the knife down and use the fork to put the egg in your mouth not your nose! Don’t even ask what he’ll do with a straw and a smoothie. Big conceit to show how silly these thinky things really are because the dead are having fun at Coney Island on a big rickety wooden roller coaster. With the Holy Ghost.

Just Who’s He anyway? I think the HG also God, just like the Son is God and the Father is the Big Kahuna God father of Christ. Right? But I’m Jewish so I am not sure if I’ve totally got it. I studied hard in my Philosophy courses in college. So correct me because I hadn’t thought to ask that question ever…

Except…

When listening to Bye Bye Miss American Pie by Don McClean. But I’ll leave this twisted line of thinking with a sorbet of one of my dad’s favorite songs. By Don McClean. Vincent (Starry Starry Night). Still it makes me cry like a big kid missing her dad. And I do think about him too.

Dead and gone, but not forgotten.

I worry about who will take down my online life or does it just linger like a ghost in the machine?

They aren’t worried about us here killing the planet, the people, and all the great ideas to fend off doing the first two things by capital crazed thugs.

I think a lot about the data on the net and how little our friends in oncology get out of it.

Of interest is how to help providers mine our data so it’s a two way conversation and they benefiting as well from social media. The money to drive these efforts likely needs to come from the provider side to develop the platforms to deliver usable, useful information to those who benefit most. I’m not sure how much I’m comfortable with insurers and pharmaceuticals involved in the discussion, but it is public information once we post our questions, opinions, and so on.

There’s really no way to stop anyone from sucking up our information anywhere but to closed groups like you mention on Facebook. And even then I question the privacy of such discussions given Facebook’s track record with in privacy matters.

I believe we benefit and our doctors and nurses and institutions can greatly improve our healthcare if our voices become part of the quilt that is the cancer care industry. My oncologist had me review with him the social media landscape as he’s involved with small study on this matter and I wasn’t surprised to see his lack of initial understanding. Now he knows who’s who in our world and even knew who I was referring to about two months back when I said I was feeling sad and a little bit of my own mortality because a voice had died of someone I respected and who I knew only through her tweets. He even knew that her husband had made her last post for her. Its way too granular but still impressive nonetheless that he’d come so far in a short amount of time. He certainly now knows a lot more about my psychosocial challenges!

I think about other bloggers who I care a lot about.

Tonight I read about Abigail’s second week on a new chemo that caused her blood sugar to rise like a getaway kite.

Blood sugar without the benefit of the sugar? So much b.s. so little time (double entendre intentional). We metsers unfortunately are the real control group of human trials of insane poisons that aren’t going to save our lives but extend them.

I was hoping she had the benefit I do of Palliative oncology. I have come to realize in one of my thinky thought sessions that they are the janitorial staff of metastatic care – perhaps one reason my pals seem to all leave very quickly (that and they all seem really over booked.)

I know that not all of them are the best. Just like oncologists: there’s great, good, and run far away! With so many opinions, like assholes everyone’s got one, and so many drugs to drag our slouching bodies towards Bethlehem, there’s so many bloody unknown causes of so many side effects. But at least I’ve had the benefit of the palliative teams.

I’ve seen in 4 years and 5 months of which I’ve seen as many palliative oncologists as years – to help me handle the fallout, or as Dr.Susan Love calls: the collateral damage, of metastatic disease. Big sky sized crater making fire ball sizzling meteor like problems including our family matters and psychosocial challenges. The good ones listen and help navigate the gaps between oncology visits.

No we metsers are very resilient people. We have to be. We’re not superhuman although it’s great to give our good hope to others to make their problems seem small comparatively.

I hope you enjoyed my struggles for my sanity. As a man I just met tonight as I checked into his Inn in Auburn with my beloved, he asked the most direct question I’ve been asked since diagnosis by anyone.

Mr. Inn,”How do you DO it?”

Me: “What’s that?”

Mr. Inn, “How do you stay sane?”

“I have to. I just do.”

6 thoughts on “A random walk in my mind or the few moments in the mind of the living dead

  1. Like you, Ilene, I “worry” (although I don’t do worrying really) about the loved ones I’ll leave behind, and how they’ll feel. And also about my online stuff, but not just my profile – I try not to think about it, although I know I need to get some stuff sorted out, just in case. And like you, I’m not scared of the concept of death – but the reality of it is something else. But then we were always dying, from the moment we were born – we just didn’t know it, so we were able to live in blissful ignorance until someone told us we were ill. That’s how I stay sane – or sane-ish, anyway.

    1. Julia worry doesn’t do us much good. Stress is a killer and worry’s only good for that. My big question is why people think we are so superhuman and why they are so inspired by us. We have a deadly disease and we do the best we can during daylight hours. They don’t see us when we are crying in a bath or angry at the world. Often they say “you look so good” (for someone with metastatic cancer is what they mean) again they see us mostly at the best we can be at that moment in time. Big difference for me and I know they’d be horrified to see me without eyebrows or like my hair is growing in five distinct directions at this time after six straight months of chemo. I’ve had so many disappointments from “friends” or people who want to seem like Florence nightingales and I definitely seem to attract narcissistic types at times but I cut and run by calling them on things very ugly like huge promises they never cared to keep. No one should do that anyway, but not to the dying. That’s just crappy.

      I can say that as far as the online stuff you can assign a person on LinkedIn and on Facebook to take a profile down after you’re deceased. I’ve done that already. Craig will have to deal with the rest unfortunately for him when he is ready.

      I think a lot. It’s part of my blogging I suppose. Writing helps me get my thinky time down to a minimum 18 hours a day and keeps me sane as I can be. Writing itself has the power to allow me to review my thoughts and reclaim the saner parts while tossing away the silly or not so sane things by reviewing them in black and white.

      Peace and love in peculiar times,
      Ilene

    1. Ah there she is! How have you been my favorite warrior? I’ve noted on the dreaded Facebook you look marvelous these days especially after all you went through this last year. But then again don’t we all look better than we should I suppose?

      Miss reading your blog you’re not writing a bunch and I hope that means you’re busy and happy.
      💕💕💕

      1. It’s been hectic lately! Adopted a new dog so we’ve been getting acclimated lol. I volunteer on a Metaplastic group as well- trying to help my Metaplastic sisters with my knowledge and the path I’ve already walked and continue to.

Tell me what you think.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: