CC Notes: Almost Back To Life.

Sorry for the abrupt disappearance, I was in very bad shape Tuesday and Wednesday. The chemo pump will be coming off shortly, and hopefully, I’ll start recovering from this last round. First and above all, my thanks to Charly and Voyager, who kept Affinity up and running in fine, interesting style. I can’t say thank you enough for that, and all your posts are so popular. Speaking of, I am so behind in answering emails, I have received them, I will answer! I’ve also gotten all the new submissions, and there are a lot, so it might be a few days before you see your stuff up, but I will get there, I promise.

I did manage to avoid another Neulasta, my neutrophil count was over 10 after the first dose of that nastiness, and it’s hoped it can carry me through the final cycles. If not, I can opt to do the more minor injections over three days, rather than the on body. This time, what knocked me on my arse was…heartburn! Yep. It started while still in the infusion center, but it wasn’t horrible. This was my first Tuesday, and never again. Holy shit, it was stuffed full of extremely talkative old folks, along with a nurse coming back out of retirement temporarily, and one who is a major, loud talker. Two of the older gentleman who had been trading work war stories, and complaining about the current crop of people were concluding their talk next to my chair, as the one gent was getting ready to leave. During his final chat, said gent was burping throughout, quite loudly. Then I heard a woman across the hall talking about her horrible bout of heartburn/acid reflux, which she dealt with by taking “old-fashioned pepto bismal.” I should have taken all that as an omen.

Chemo now exhausts me to the point that walking out of the hospital pretty much eats all my energy. I couldn’t even make it into the store to pick up my dex from the pharmacy. Got home, attended to my bag and all that jazz, then fell over into bed. Rick made me some Malt O’ Meal, which went down well enough. It wasn’t until late in the evening that the heartburn from hell hit. There was pain, there was burping. There was vomiting. I spent the night pretty much chained to the lav, leaking out both ends. Antacids weren’t helping, and I was out of the old-fashioned pink stuff. Rick was in town working on Wednesday, and I asked him to get me all the things, which he did. After taking much more than I should have of the generic prilosec and zantac, I was finally able to get some damn sleep. It still hasn’t gone away, I can feel it lurking in my throat, but here’s hoping I can keep a leash on it.

I really do count myself as lucky that I made it through half my cycles without feeling terribly bad. I’m not sure I could have carried on if it was like this from the start. I still remember the day of my first infusion, I was full of energy and appetite after. Seems like half a lifetime ago, and that particular me is nowhere in sight. The fatigue is mind-numbing, and the shake is worse than ever. In the good news department, pain has receded a fair amount. In the bad news department, chemo brain keeps getting worse.

I will be sleeping in each day until I’m fully back to life. Even though I get up early for me, around 9am, but that’s okay, as long as I don’t have to set a clock.

A Quick Note.

Tomorrow is April 1st. I don’t “do” April Fool, I find that sort of thing boring and annoying. If you’re someone who thinks April Fool is all harharfunny, please, take it somewhere else, it will not be appreciated here. And if you’re one of those people who reads this and thinks it’s still okay to carry on, here’s a fuck you, you are outta here ahead of time. It’s just another day, and if you treat it that way, we’ll all have a fine one. As for Ēostre Day, have a good one, in any way you choose. Me, I’m going to continue to sleep in, I’m sure Ēostre won’t mind.

Cancer Chronicles 15: The Takeover.

The chemo pump.

A familiar sight, I’m attached to the chemo pump again. Chemo brain is in full force, so if this post is disjointed, that would be why. I’m also having some motor problems with my right hand, so there may be may typos. (Motor problems thanks to the oxaliplatin). Just how much cancer changes and takes over you life has been a thread in these chronicles from the start, and sometimes that sense lowers, and you don’t feel it as much, and other times, it feels like it’s bashing over the head, pile-driving you into the ground. Yesterday was one of those days, left me frustrated, annoyed as fuck, and completely out of control of my own life.

Because it’s cancer, and presumably, you don’t want to die yet, you end up at the mercy of, and under the thumb of medical and insurance. Last week, I agreed to Neulasta injections so I would not be pushed back on chemo anymore. For whatever reason, my oncologist left out some rather vital information about this fucking process, and he will be hearing about that in two weeks. Not living in town, I was not about to come back into town on Fridays to have my pump detached, I do that myself. Now I find out that the Neulasta cannot be administered until the chemo pump is detached. Neulasta comes in the form of patch with a  sub-q needled, timed to deliver medication 26 hours after the chemo pump is detached. It’s a peel and stick:

So, I should be able to do this at home too, right? Wrong. Because it costs $6,000 a shot, the insurance companies have a rider that it must be administered at a clinic or hospital. Here’s one big FUCK YOU to fucking insurance companies, you all fucking suck. What in the fuck do they think I’d do with the damn thing? Sell it to a black market? Feed it to my dog? Flush it down the toilet? Well, one thing is for certain, you can’t trust a patient with it, oh no.

So, this week, that means our schedules get all manner of fucked up, have to go back in this Friday for less than 5 minutes worth of ‘treatment’, and for that, we get to waste time, pay for fuel, and have to register for the less than 5 fucking minutes, which means handing over another $25.00 copay. We’re being $25.00 dollared to death. Naturally, we tried to change the schedule so we could work things out so at least Rick wouldn’t be burning up more vacation days and losing work time. Could we schedule for Monday? No, because people don’t seem to think working on Mondays is cool. We can’t switch to Mondays until Cycle 6. Maybe.  Anyway you look at it, we’re getting screwed over with the sharp end of the stick.

I could feel the thin thread fraying and getting ready to snap. You lose control over your life from the moment you hear ‘Cancer’. That’s it, you’re sucked into Cancerland, and there’s nothing you can do, and pretty much all of it sucks fucking dirt. There’s no good place to discharge all the anger and frustration, either. It just ends up randomly leaking out all over the place. I really have to get that throwing wall set up. I could smash a whole store full of glass right now.

It’s also a major annoyance to see how much rural people get screwed over. Sanford keeps expanding, they’ve about eaten up a good portion of downtown Bismarck, but will they expend any fucking money on satellite clinics? No. You live rural, you get one big fuck you from hospitals. They don’t give one shit about how far you have travel, or how often. Oh yes, you can apply for an apartment in Bismarck, but this assumes people have no lives whatsoever in ruralistan. Around 50% of the people I’ve met in chemo live way out from Bismarck, anywhere from 1 to 6 hours out. Even when Sanford does bother to try and set up elsewhere, like the hospital they’ve started in Dickinson, they don’t have an oncologist, and they most likely simply won’t do oncology there, people will be referred to Bismarck. And while a hospital is needed out Dickinson way, I’d rather see satellite clinics, which could at least deal with things like Neulasta, so people wouldn’t have to travel so damn far for five fucking minutes. It’s yet another reminder that above anything, hospitals are a business, and no matter how they represent they are all about patients, they aren’t. At least not the rural ones.

Even with all the noises that would be made about how they can’t do satellite clinics because blah blah bureaucratic bullshit, why not an outreach program, to train local physicians so they could do the 5 minute crap, like detach pumps and stick a fucking patch on your arm? I’d be delighted if I could get this shit done in New Salem or Glen Ullin.

I suppose I’ll get back to painting, if I can manage to hold a brush.

ETA: oh gods, that fucking Oxali. I went  out to put seed and suet out for the birds studio side. It’s not even terrible cold out, 35F or so,  and my fingers are numb, as are my lips, and the cold hit my throat so hard, it almost seized up and went straight into my chest, making even shallow breathing hurt like hell.

Anatomy Atlas Part 1 – Spine

This first in a series of human anatomy sheets that I have drawn during my studies.  As future biology teacher I had to acquire some basic knowledge about most of biology – sort of  jack of all trades, master of none. However our class was one of the last where human anatomy was taught by a prominent Czech physician and scientist Profesor MuDr. Jaroslav Kos. He was eighty years old at that time and it was showing, however he still was formidable and very strict. I failed my first exam miserably, I do not even remember what the theme of the examination was. I think brain stem? Nevermind, it took me two attempts to pass and for the second attempt I really sat and learned latin like my life depended on it. He did not even let me finish on my second attempt  and waved me away with top grade after I described how  nervus olfactorius consists of multiple separated fila going straight through lamina cribosa directly into the bulbus olfactorius of the brain. I forgot most of my medical latin over time, but I still remember this.

Spine Drawing

©Charly, all rights reserved. Click for full size.

A fun fact about spine – the “S” shape of our spine and all accompanying problems it brings stem from the fact that it originally evolved for movement in water and later on land with lateral undulations, which was later yet modified for movement on land on all four with vertical undulations, which was even later modified for upright movement on hind limbs only. The spine was definitively not intelligently designed for vertical posture and load bearing. Evolution has done its best, but that is always “just enough”.

A very brief introduction

So. Testing, testing. Is this thing working properly?

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Caine asked for some help with blog content and after a consideration I offered to do it. She has handed me the keys to her blog and I will do my best to not scratch it. Hopefully my blogging skills are better than my driving (you really would not like to lend me your car, and I would never accept it).

Most people reading this blog know me already from comments. So just very briefly who I am:

I am male, Czech, living in CZ. First third of my life I lived behind the iron curtains – literally. After it fell I graduated in teaching of biology and chemistry, and I also briefly studied psychology and arts. Currently I am working in Germany and in the course of my work I often find myself in situations like in YouTube sketch “The Expert“.

You are free to guess who I can relate the most with. I have already once said about one of my managers that he is an incompetent buffoon with whom I refuse to work. I expected to be fired after that, but instead the boot has hit his ass.

My hobbies are gardening, photography, woodworking and knifemaking. In the past I was also drawing and painting, but alas I do not have time for that anymore. But I hope to have again sometime and I will post some of my former works. I was not magnificent, but I have on occasion managed to do a decent job of it.

Thinking under a tree

©Charly, all rights reserved.

Politically I am left of center in my country, but I would be considered to be a radical leftist in the USA.

I consider the most important skill to have to know when to shut up. It is also the most difficult skill to acquire and hone.

TNET 16: A Wee Bit Crowded.

Map created by Reddit user iBleeedorange.

The map above supposedly shows all the public saunas in Finland.

According to Statistics Finland, the total number of saunas was estimated to be over 2 million at the end of 2016 out of a population of just 5.5 million people.

Via Brilliant Maps. Open thread, don’t be an asshole. Thanks. Previous Thread.

On the wings of time…

© C. Ford, all rights reserved.

We don’t make a deal out of our anniversary, for a couple of reasons. We did try, at first, and the first three years we tried to go out and celebrate? Each time, the engine in our current car blew. That happened the evening we married, too. So we decided maybe ignoring our anniversary would be best. We also tend to forget about it. Oddly enough, even with the chemo brain, this time I remembered. Today is our 39th year legal; it’s 41 years we’ve been together. Rick will be home late this evening, and we’ll do what we normally do, and ignore the anniversary business.

All these years, they’ve gone so fast. Decades ago, we sat and talked, and you pondered whether or not we’d be together when you were 64. (Yeah, that song was playing.) Well, now you know. I love you with all my heart, more than ever. And here’s hoping the car doesn’t die on the way home.