So, alright... DEEP BREATH
First, the bad news
I'm sick.
Yeah, I know some of you are snickering because obviously, if you've paid any attention to my "career" , that much about me is profoundly obvious. But no, really... this time it's not the fun kind of sick. It's the notfun kind. I believe that is the scientific term for my condition.
I got the Notfun T'all Blues
I have a really aggressive, out-of-the-blue-style, freakyass ovarian tumor- "complex", they call it. My doctor used the word "grapefruit" to illustrate it's approximate size. I've never much cared for grapefruit on its own (like, without gin) but now I fucking hate it with all my heart and no spoonful of sugar is going to help me see it as anything but an all-out demon. This thing has GOT to G-O!
NOTE- PUT THIS SONG ON BEFORE YOU READ THE REST OF THIS!
I have been toying around with the idea of talking here about cancer for the last few months since discovering (and verrrry slowly coming to grips with the fact that) I am ill. Specifically, I'd like to share my story about fighting my own cancer but in a broader sense, I hope to start a discussion about the medical industry's approach to treating it in general... only, from a high-functioning, low-budget, full-time Steemian's perspective with an (albeit reluctant) troother's twisted outlook on the status quo. And If I know this community like I think I do, possibly set up a network for patients and RSO producers to connect via Steem transactions in order to bypass the poisonous "cures" that They want us to accept.
Why not, right? I mean, I AM a total badass muse, after all! Fuck it!
Up until today, I haven't really been able to come up with a nice way to do that, because I have a pretty serious case of forest/trees syndrome going on. I have very limited family and only a tiny, faraway IRL friend circle so that's been an obstacle for me to keep my head about this. But! Having recently stumbled onto and
blogs has done a lot to help put things into perspective. If you haven't seen their story, you should go and take a look. It will change your ideas about life, death, and how to manage really dark shit with grace and dignity.
I want to take a second here to thank the two of them for their beautiful approach facing their ghastly circumstance. You both are a source of inspiration for me and offer a markedly viceral reminder that as bad as it can get, the ultimate outcome of life isn't something to be afraid of, cancer or not. We all are heading to the same place eventually and making the most of our time (while it lasts) is what truly matters. I know it's probably a teensy bit grabby of me since we weren't friends before things went this way for you, but I love you guys! Thank you for sharing your story with all of us. It has really helped! I'm very proud of you both.
Prognosis: PISSED OFF!
I'd like to state that any kind of tumor is complex and really don't appreciate how vague they like to put these kinds of things. Just being told you have such a thing introduces a whole level of complexity to one's day-to-day... like, oh shit, OH DEAR, OHHHH NOOOOES!!
Getting the news that you have cancer is both totally isolating because it's so personally scary but at the same time, so many people have it that it occurs to you (in an intrusive way) that your own fight is almost not worth talking about because someone you know has seen a lot worse... so, that is a little bit of a relief and at the same time, a little fucking offensive because, like, hey!! ME ME ME!!!
I noticed something was wrong with me back in September when one afternoon, my habitual daily walk to the cigarette-and-beer store ended up with me sitting on the curb, clutching at my sides to work through what I thought was a random cramp that just wouldn't stop. It got so bad at one point that my head went all swimmy and I puked onto the asphalt. I remember watching the cars whiz by in slow motion; each passing second going click, click, click.
When it finally subsided, I got myself vertical and limped my ass on home empty-handed (no cigarettes-and-beer for you today) and started looking up how on earth something that felt so bad could come on so fast and hit so hard. I ended up self-diagnosing a whole bunch of things that aren't actually wrong with me and just kind of decided to write it off as an isolated freak of old lady nature. But then when I woke up the next day in even worse condition, I switched from doing research straight to applying for medicaid.
Hey! Cancer is shit but least it's not lupus!
As an aside, it takes a whole lot to make me seek medical treatment. I mean, I can barely be talked into taking aspirin for a headache but this was something special. It felt like I was being attacked by 1000 invisible knives and that the more I ignored it, the harder it came. The days got shorter and darker and it wasn't just the season. I started to fall into the big booby trap of self pity and panic.
As the weeks passed going into October, just waiting for government approval and feeling ashamed that I need it, I began to unravel, vacillating between states of supreme worry and nearly theatrical levels of denial.
But finally I got coverage and went to see the first doctor that would take me. I got really lucky because, as it turns out, she's wonderful. I can't say enough about her... but I'll leave that for now.
I talked to her about the big lump in my belly and then she started the tests.... the tests. ALL of the tests! I sort of had an inkling that I wanted to present my story to the steem blockchain back then at the beginning so I started taking notes and pictures. I'll be sharing some funny and ugly and weird stories about this until I think there's nothing helpful left.
Now the good news
My main goal here is to help to anyone who hasn't had as much experience feeling their way through the big, dark, man-eating hole of the U.S. medical field as I have- when you get diagnosed with something this entirely fucking wretched- to see that the "bad" news is just the first part of the story. It's not the end of it. That's really what's driving me. My mom died of a brain tumor and my dad and grandpa each endured repeated cancer battles. We have a joke in my family that if we were a dog breed, we would be disqualified from pedigree because of our tendency for cancer.
But I say, no. No, fuck that. This dog still has a few teeth left and a bark with a built-in echo! WOOF!
In addition to that objective, I hope to gain the kind of assistance that will keep me from having to seek income during my ordeal that has to be E-begged for. We steemians have a way of rallying around one another when things get real bleak... but like I like to say- if there's something you need but you don't let anyone know about it, you stand a 100% chance of not getting it. So feel free to throw donos my way. I promise not to spend most of them on hookers and blow.
Most of all though, if I can reach one scared person and make them laugh or educate them on how to force their care providers to think around corners when things get really bad... then that, there... THAT is what I want!
It can be really intimidating dealing with doctors and their staff. I hope that by sharing my experiences in the weeks to come that someone who is facing this with even less real life support than I have will feel that they are not going it alone. Having the Steem blockchain to put these stories, ideas and conversations permanently in view will, I hope, be a resource to someone somewhere, sometime.
You, out there, are what this is about. You're not by yourself and your story is worth telling. It's worth hearing and I am here to listen and to provide assistance if I can. Maybe if enough of us start approaching this bullshit in this way, the system will undergo a change. It needs one.