#FUCKCANCER BLOG #01 - The Good News & The Bad News ~OR~ Prognosis: Steemy

in #fuckcancer5 years ago

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 @lynncoyle1 and @briancourteau 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.

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Keep up the fight my friend!...So is that considered breast cancer?....100%UPVOTE mate.

Gotta say titty pic got my attention too. I am so sorry of your diagnosis and that you are facing this monster with little support in close proximity irl. But, as best as possible your SteemFam has got your back. Do you know @wolfart? He's also a good guy in our community blogging about his journey with cancer. When you said 'WOOF!' In the post it was like i could feel the growl of that resonating in my soul. Hugs & all my love girl 🙏🎶🌻💚

Yeah, I dazzled you with the ol' Xray Titties trick!

trigger.gif

I'm gonna go scoop up @wolfart in a big butterfly net. Thanks for that! xoxo

...or maybe not so much

@wolfhart!

Can't believe @yogajill wrote @wolfart!

oops, that's me, half asleep.

Nice one! Haha glad to see you out and about Asher!

:D

Yep, making an effort today to do that!

@wolffart ROFL
It’s true its true 😂

Nice to see you Asher
Thank you @yogajill. 👍

Oh geeze! I try. Haha

Haha! I try 👼

First of all, I'd like to tell you how sorry I am about your diagnosis. I feel dumb for not having the right words to share with you, but I did not want to read this and say nothing because to me that would almost be worse. Just know that even though people may not know you or even know you well, you are first a steemian and people want to Rally around you.

I'm going to keep you in my thoughts and prayers, regardless of you are religious or not. I I intend to keep up with your journey and check in now and again. Thank you for putting it out there for all to read. I'm sure that I will learn a thing or two about modern medicine.

!tip 0.5

I love you. You are a superhero, a gem, you are everything strong and beautiful. Although I don't curse, as a general rule, FUCK cancer, indeed.

payphone superherewe FUCKCANCER.png

I don't know you but I say F cancer as well. I know it's cliche so I won't bother you with the "Prayers and Thoughts" thingy ( Even though I do say that) . I'll just give you a full powered one and a little sbd along with it and call it even :)

ps, I can't believe you posted a tiddie pic on Steemit 😲

It's pronounced "TIT-tays" okay? How many times do I have to tell you?

I've had to deal with the US medical system far more than I care to. While the cancer diagnosis that took two of my kids was hard enough to deal with - dealing with the medical system (can't call it health system) was probably just as bad if not worse. Toss in a debilitating work related disease for my husband and add the demoralizing SS Disability system into the mix and I've had my fill of what passes for "health" care in this country.

Not to mention that I'm too fond of the go to chemical and radiation treatments they seem to be stuck on for cancer treatment. That seems to fall under the treatment being worse than the disease in some cases.

I will be watching your progress with great interest, and hope for a good outcome from both the disease and the incredibly frustrating medical and governmental issues.

Yow! You've really been through it. I just want to hug you. And I couldn't agree more about the standard treatments being worse than the illness. That's why I want to take a different route. I won't be talked into those "therapies"! No way!

Sending thoughts of strength and love to you Kerry. You're perfectly equipped to fight this thing, and I'm glad you're writing about it. Your courage will inspire others to fight it too and challenge the system like you said. 💎 💜

Hey, girly! Been missing you. xoxo

xxx stay strong, and thanks for sharing your story. You have a great attitude and you have a larger circle of people than you think ( me hoping to be included as one of them)

I have followed lynn and brians story for some time now. they have made me laugh and they have made me cry. I have also followed the story of another steemian that is currently undergoing treatment. these people have truly enriched my life, and you have too. So thank you again because I know you will make people feel not alone. Sending massive hugs all the way from Ireland

You've been a huge source of inspiration and learning for me. I'm glad we crashed into each other. Thanks so much for your support. I really think that we can make things better for a lot of people with the tools we have here.

The not having or being close to support is a royal pain. I was 170 miles away with nothing but snow and ice covered roads to the hospital. I had help getting to the hospital, no problem there. But when it was time to leave after ten days it was, no you can't drive, no you can't fly, no not even in a small plane at 1000 feet in the air only, you need to stay on the ground. 170 road miles is one hell of a taxi fare, and then the taxi charges more because their driver needs to get back to town, and then their is the fact it is a three and a half to four hour drive, so there is the possibility of extra fees because of the number of hours involved. Insurance helping to pay for the ride home? Not likely, they will pay for the ride to the hospital but not home from the hospital. The hospital did find a company that would take me almost home, from their hospital to the hospital in my town. Then it's a taxi from there.

So yes it is going to be very hard without having a close in support person to help during those times. Rural life is nice and relaxing, but when it comes to the big medical problems sometime the local hospital does not have the doctors needed.

Anyway, yeah, scary those words you have a tumor, you have cancer, we need to get it out of you. And then comes the waiting, and the test, and then the decision are you healthy enough for the surgery, the medical world seems to think we need to fix this right away means in six months, not next week.

"...no not even in a small plane at 1000 feet in the air only" lol. That really cracked me up because I can hear your end of that conversation in my head. Like, okay then, how about teleportation?!? lol

Of all the blessings I have to count, being within walking distance of my hospital is a major one. And the facility is new so everything is nice there. It's not like any hospital I've ever been in, that's for sure! Just having the kind of access that I do makes me a lot luckier than a lot of people going through this process.

The whole hurry up and panic wait game is totally infuriating. When they say words like "aggressive" and "grapefruit", and then take months to get you through the system, it's kind of like, hey! Let's go! Come on!! CHOP CHOP!!! (pun intended).

I think the wait was the most infuriating thing of all, you know, the doctors know, and there is damned little you can do about it and the doctors just keep taking their time.

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