Sylvia’s Story

Site created on October 2, 2020

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Journal entry by Sylvia Miller

The Cancercoaster kicked my ass for over two weeks. There was this long, downhill drop, but slow, like there were brakes on it. I could  see the dip, but not what was in there. Cotton Candy? WITH EDIBLE GLITTER?! yay! A massive horror movie style trap? Not so yay. I spent a lot of time sleeping and wishing I could eat an actual meal, all at once, like a normal person. 

At one point I decided that if I was having to nap after the exertion of putting on makeup, then maybe I shouldn't put on makeup. I could simply go the store, grab a potato and make myself some soup. The problem is, I enjoy putting on makeup. I love playing with my eye looks and have been known to consider "packing light" as to mean only taking six eye palettes with me. So I robbed myself of joy to go to the store for a single potato. I wanted that potato that badly. I wanted potato soup! Homemade potato soup! Where I was going to get the energy to make that potato soup I don't know, but as long as I could get to the store for a potato, I'd have it and I could make a tiny bit of potato soup after I took a nap. But only if I could travel the quarter mile to the grocery store!

I did not make it that day. Or the next. Or for many days afterwards. When I did finally make it to the store, it was makeup free and I did not care. I was proud of myself for making it that quarter mile. I was proud of myself for actually getting out of the car. I was proud of myself for making it across the parking lot and into the store. I found a potato - and it was a very nice potato! - and I was proud of myself for barely standing, weaving, sweating from the exertion of clinging to my cane for support, eyes locked  on the belt on which to place my single potato, as if the intensity of my gaze could hold me upright, in place. I was proud of myself for accurately counting my change on the first try, making it back to my car without sitting on the bench to rest first and then safely making it the quarter mile home with my potato.

I put the potato on the counter and went straight to bed, staying there for seven hours. My mom made me potato soup when I woke up, because I couldn't even do that. 

I know now that was me coming *out* of the dip. 

I'd wake up with some energy, but it would quickly dissipate and I'd head straight back to bed. Everything hurt, I was sick and exhausted and slightly feverish. I swell up at a single bite of food and that hurts, too. I don't want to eat, but I do want to eat, so I eat slowly, tiny bites, tiny amounts at once and then suffer the consequences for hours. Soylent and I are good friends, because I'm pretty sure it's keeping me alive at this point. I spend most of my food stamps on it as soon as I get them, then I pick up a few treats. When a single meal can last you two or three days, you can do that. I've had significant help in people sending me gift cards to Door Dash and various restaurants, fast food and otherwise, that have allowed me to buy myself full meals and then slowly, carefully eat them as I can. 

This is absolutely amazing. I never realized how loved I was. I truly didn't. I still can't comprehend it, at least not fully. I've no idea why - anything. 

My medical crap is crap, too. It really is one of those crappy turns on the Cancercoaster. You know, the ones that speed things up and give you whiplash at the same time. Every. Medical. EVERYTHING.  They have all been like this! 

We'll see good, hopeful signs that are either completely disconnected from how I actually feel or that are swiftly contradicted by  other signs and test results. I'm actually losing track of everything that is wrong with me now. My anti-cancer poisons can cause heart damage and they saw signs of that, so I am now on beta blockers. My grandparents weren't even on beta blockers. I am on so many medications I can barely effectively manage them all!  

Brief aside/rant - I have a spreadsheet for my medications now so I don't accidentally die at the hands of a well meaning first responder if I fall out, or maybe worse yet, by my own hand when I get  confused about what to take and when to take it. I get ragey every time  I see it. So approximately eight times a day, I am BEYOND ANGRY. This unreasonable anger lasts as long as I see the stupid thing. The strength with which I can slam things around and the sheer energy level of my muttered curses while that thing is in my sight is actually pretty impressive. 

There's a reason for this level of crazed hostility toward spreadsheets. Have I ever mentioned how much I hate spreadsheets? Well, I do and I just did.  I am pretty sure it goes back to the time I tried to do office work and they wanted me to learn how to use Excel, a spreadsheet program, as a database. Access is a database program, why are we trying to use Excel? It was an exercise in overly complicated stupidity that basically broke my rule-following brain because there is a  better, easier way to do this - by  using the program that was actually designed to do this. Imagine that!!! But we weren't allowed to do that, because "no one else" knew how to use Access, since they were trained to use Excel in its place, and then only barely. As a result, I HATE SPREADSHEETS. I was clearly traumatized by my attempts at office work, and spreadsheets and "databases"  played a huge role in that. 

As did office politics, which ties directly into the stupidity that is using a spreasheet program as a database. 

I am absolutely convinced that the ghost of the single aging secretary who was first presented with the office suite is behind this. Close enough to retirement and with nothing but years of faithful, increasingly aggressive service to a single employer to be essentially at "office god" level, she was rather shockingly forced to upgrade her skills and taught how to use Word and then Excel. Deciding enough was quite enough, full of bitterness and anger at the affront to her status, she stubbornly refused to learn Access. She instead pulled a massive flex, forcing Excel to do her bidding - barely! -  dooming entire generations of office workers to this nonsense in the process. She now spends eternity floating around cube farms, laughing evilly every time someone else has to try to force a program to efficiently do something it was not designed to do. This is her revenge for corporate insolence and the failure of the rest of the team to stand up for her. 

I am also convinced that every time someone has a problem with their "database", by which they mean "spreadsheet I'm trying to use as a database",  some IT guy changes the code on the door and then withdraws even further into the darkened corner of the cold room. Buy that guy some snacks and drinks and apologize  for being part of the problem, because you probably are. We ALL  are, really. It's what PEBKAC means, after all.  ~ end aside/rant

The Cancercoaster is the worst rollercoaster ever, is what I'm saying. 

But! I may be on an uphill climb! I can hear the gears and chains grinding as  we try  to make it up that hill. Is it the hill that will coast us back to where we get to climb off? I  sincerely doubt it, but the last dip was pretty intense, I know they can be worse and I am fighting the anxiety that comes from that knowledge. 

They say knowledge is power. Is it really? I know it is for many things, but if it is causing you anxiety to know that the drugs that have helped keep you alive are also heavy metals, which cause such damage to your  body that they've been used as poisons to murder people for centuries, is that helpful?  To know that they are cumulative and build up in your body, increasing the damage, increasing the sick, increasing the anxiety as you realize what's happening and then have to question if it's your disease causing the problems or the  poison,  does that better inform your decisions? And there are so many problems it is entirely possible, probable even, that it is both disease and treatment. What the hell do you even do? How is this knowledge empowering me? 

You know what you do? Whatever you need to do. For me, it is to stay on that Cancercoaster and hang on. You hope some day it turns into a regular ol' rollercoaster, not  because you've adapted to it, but because it was worth the ride. You prepare yourself as best you can for the reality of your situation and where it is leading, but you still hold on. You still try. Because that's all you've ever done, so it's what you know. What you know is easier, and when you're this ill, you need easy. 


I am proud of myself though. And not just because I am on the mend enough that I have since made it to the store for the free rotisserie chicken deal, which I ended up sharing with my cat. I can't eat it all, that's for sure. I also painted my nails a lovely multichrome that shifts from green to blue to teal to purple and makes me happy every time I lay in bed and slowly rotate my hand to see that shift. Then I made it to Cold Stone Creamery - one of my FAVORITES! - and used my gift card to get a pint of salted vanilla bean ice cream with banana, caramel topping and graham cracker crust mix ins. That is one of my favorite things from one of my favorite places. 

I'm not as tired today. I'm a little owie, but not the kind of screaming pain that  drove me to the ER a couple of weeks ago. The kind of pain that can be managed with half a Percocet and a spoon full of that ice cream while wrapped in heating pads and sitting in front of fans, meditating. I'm pretty sure that will be coming later, but I'm also pretty sure I've got the energy to get out of the house today, too. That is so important to me. Just having that freedom, that choice -  it's vital to my well-being. 

I can hear the gears and chains pulling me up and I'm not sure how long or high this climb will be, but  I'm on this coaster and I'm hanging on. Not everyone does. Not everyone can.

In the past two weeks we have had two more ladies in my support group die and three others are either considering stopping or  have already decided to stop treatment. I will never question or dismiss another person's  decision - no one knows how awful this is until they've been through it, and it's such an individual thing  that you still don't know for anyone but YOU - so I understand why they are making their decisions. Understanding doesn't make it easier to watch, though. It just helps you find the way to  accept it and then communicate what you wish to communicate more fully and effectively, with the love, care and concern we all deserve, as your only motivation for communicating. 

I am proud of myself for holding on. For making it as far as I have. I am proud of myself for not withdrawing. I am not brave, I am not strong, I am human - and I am proud of myself for being a human and dealing as well as I can with such an inhuman disease with such inhumane treatments as my only hope. And to know that hope being a cure isn't realistic, but holding on anyway. We are simply extending my life as long as we can, while keeping me as comfortable as my insurance company, finances and the law will allow. I will hold on, for as long as I can, because it is a terrible, but  worthwhile ride. 

As far as I'm concerned, as soon as the word "cancer" hits your  medical charts you should be able to grow an entire field of opium poppies, get a free pass to any pharmacy in the world for whatever you want at any time and a bottomless supply of Starbucks Mango Dragonfruit Refreshers (no water, no ice -  straight flavor syrup/concentrate), because those things have been my only source of hydration far more often than I care to  admit. This stuff HURTS and it sucks. But  I'm hanging on. 

The thing I am most proud of though is that I finally, FINALLY got myself accepted to the UC Davis Body Donation Program. This means that when I do die a number will be called, my donor number will be given, a few questions will be asked to make sure I am fresh enough and not a biohazard or anything and then they will whisk me  away to start my new career as a Very Helpful Corpse. I can be used to teach anatomy if I have enough parts left. I can be used for all sorts of research projects. I can even be parted out and do lots of different things in various teaching and research facilities, not just UC  Davis. HOW COOL IS THAT?!

The actual steps to do this were not that  difficult. The emotional steps - holy shit, that was a LOT harder than I ever dreamed it would be. This is something  I've been wanting to do for years, never quite got around to doing and then when I had everything ready and in front of me - I couldn't. I sat on that paperwork for weeks before finally having two friends sign as witnesses, holding my breath and mailing it off. 

Then my papers and my card showed up and I was ELATED! I carry a special ID  card in my wallet now, just in case I'm away from home and slumming it at some random strip mall thrift store that looked interesting when I fall out and die. They will open my wallet, instantly know who I am, who now owns my empty shell and what to do  - just call the number on the card and then do what you need to do to be OK with what you are  experiencing in that moment

Did I mention that from a practical standpoint it is also free body disposal? Cuz it is. They don't pay you, gosh darn it, but they don't charge you for the privilege of not having to live with a corpse in your house until the cops show up, maybe years later, turning you into a Fark headline and giving you the snarkiest  fifteen  minutes of fame ever. 

If my family decides they don't want this and I die at home, as I most likely will, then they just don't make the call.  Hopefully they'll remember that a Green Burial is cheaper, there is  a place in Lincoln that does them and that they'll have to pay for it themselves because I still have no idea how I'm paying my car registration, let alone setting money aside for burial expenses. One of those is a non-starter and it ain't the car. 

I am incredibly proud of myself for working through that emotional morass surrounding this that I sincerely was not expecting and then doing what I both needed and ultimately decided that I wanted to do. I am so incredibly proud of this victory of mine that I kind of  want to save money for a custom t-shirt that says "I've been accepted to UC Davis!" and then in smaller print "UC Davis Body Donation Program" with the information site URL. Darn tootin' I'd wear that Every. Chance. I got! In a 1X unisex/men's if anyone's got a screen printing whatever, cuz my abdominal swelling can be REALLY intense. My birthday is in November and you bet I'm gonna do my best to still be alive. That was totally not a hint, was it? lol :-D 

As awful as the last few weeks have  been, I am proud of myself for not giving up. For being just a normal, for me, human being and laying there and taking it and thinking dark things and light things and no things at all - and still just hanging on. It's not just all you can do, because you *can* just give up. But it's what I wanted to do, it's what I felt I needed to do. And I DID IT. 

I did it for me because I have stuff I  want to do that I need to be alive to do! I also hang on for all of you. Not because I think I'm vital to your life - you'll get over it when I'm gone, trust me! lol! - but for selfish "for you" reasons.

I want to hear peoples' stories and ideas and then, if they'd be OK with it, share them with other people, because it's the only way I can figure out how to remind people that  we're all human. We're all in this together. We are ALL on a roller coaster and that's a beautiful thing. 

Right now I'm on the Cancercoaster, which is really just one part of a much larger coaster. I'm forced to pay way too much attention to the Cancercoaster here in Cancerland, the Place That Eats Lives and Souls. When I can tear my gaze away, I'd like to look to the rest of the ride. See  what else is out there and then find the strange, the difficult, the confusing, the calm, the beautiful, simple bits of it and share them. The parts that we can all look at and maybe see a tiny part and realize "Hey, that's me/my friend/my mom/my....". Maybe find the parts that are foreign and frightening and then make them familiar enough to not be so frightening. Wouldn't that be awesome? To not be so scared of our fellow humans anymore, even if they seem very different from us? Even if they are objectively scary, to be able to look at them and have some sort of understanding? To humanize them in our minds again, and by extension, embrace our own humanity more fully. 

Life is such a beautiful, complex, scary, joyful, worthwhile thing. I may be on the Cancercoaster but I am also still on that big rollercoaster. I'm hanging on. I'm going to start waving my arms in the air and screaming with joy, because otherwise why are we even on it? 

Scream with me, people! Do it in your own way, in your own time - just don't  forget to do it. Sometimes screaming is the only way to actually hold on, so scream! 

And please share it with me, because I love it when everyone on the coaster screams. Isn't it just the  BEST? :-D 

AGGGHHHHH! *swoops away!* 

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