Cancer Chronicles 16: I Just Don’t Care.

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Herein is a litany of complaint. If you could do with less whine in your life, skip this one.

Friable. That’s me. I have reached the I just don’t fucking care point.  I feel so beaten down, and each beating is worse than the last, and like any beaten animal, I just wait with dulled eyes for the next blow to land. Part of this is the chemo, but it’s the pegfilgrastim (aka neulasta) which last strawed me. I had been told about bone pain, and possibly flu like symptoms with the neulasta. I did get random bone pain, but that wasn’t really bothersome. What happened in my case was all my back muscles seized up and went into full cramp. Then they stayed that way. Still that way. Imagine your whole back being one big charley horse. I talked about some of this in this thread, it’s hard to describe, but it makes moving seriously painful. The motor problems from the oxali haven’t gone away, and the neulasta seems to have done some amplifying, along with giving me a very bad shake. All of which are not good when it comes to drawing and painting. I can’t even turn a brush anymore, a life long habitual movement. On top of everything, the butt pain has come back, and I doubt that’s any kind of good sign.

The chemo brain is worse, too. My startle response is through the roof, because I’m not making the connection from sound to recognition. Usually, you hear a sound, auto-recognise it, and consign it to background or investigation. Everything I hear now has me jumping out of my skin. I’ve been saying all the wrong things to people,  ended up being thoughtless and stupid, and while I never meant that in any way, intent isn’t magic, and I got responses I fully deserved.  My ability to parse social cues, never what you’d call brilliant, is almost completely gone. Every time I fuck things up, I spend days on end crying and basically falling the fuck apart, and when I try to apologize, I manage to make it all worse. I figure it’s perhaps best to not say much these days. At least that way I won’t upset anyone.

Then there are all the little weird things. On Friday, I stepped out on my back deck to take a photo, and was sitting on a step. I shifted, and found myself screaming because it felt like I’d been stung by a wasp, even while a tiny, still functional part of my brain recognised there’s still snow all over, so no wasps. I checked my foot, it was fine, it had made fleeting contact with a piece of fucking ice. Ice, and I’m outside, screaming. It’s all so damned absurd.

And the fatigue. I can’t even characterise it. What’s levels past bone deep? I sleep, it’s never enough. Constantly, thoroughly chilled these days, even walking into another room in my house. I can’t stay long, and have to get back in front of a space heater. And it won’t stop snowing here. Sometimes, a person can get the feeling that Fate is having a good time fucking them around. My hair has gotten very thin indeed, and I’m losing a fair amount of it. That’s not helping.

On Tuesday, I get round 5 of chemo and pegfilgrastim on Thursday. Usually, the week before the next cycle is a good one, because you’ve mostly recovered from the chemo; not happening this time. I feel like shit, and back we are to I just don’t fucking care. I don’t care what anyone wants to do, just fucking do it so I can get the fuck out of this.

I do realize that none of this is remotely encouraging to anyone who is going into treatment, but my experience so far is just that, mine. Everyone is different, and there’s no way to tell what side effects might hit you the hardest, or what agents for that matter. The pegfilgrastim is a much meaner agent in me than the 5-fluorouracil or oxaliplatin. It’s quite likely it’s the other way around for a lot of people in treatment. Treatment is Sisyphean in nature, you shove that effing boulder up and up, and there’s someone at the top to send you tumbling down again, until the day you get to the top, and you get to stay. It’s that day you have to focus on. After tomorrow, three more cycles, then I get to move on to radiation. This is going to be one long year.

Inside Cancerland: Distortion Series.

The Neulasta not only gifted me with a fucktonne of pain, it caused a full body shake. Shaking hands aren’t exactly conducive to drawing or painting, so I put the stuff I had been working on away, and started the distortion series, because it’s easier to cover up all the mistakes and slips. So, Inside Cancerland: Distortion Series 1, Infusion Invasion. 16″ x 20″, Watercolour and marker on Bristol. Click for full size.

© C. Ford, all rights reserved.

Anatomy Atlas Part 2 – Lower Limb Skeleton

Colloquial Czech does not distinguish between a foot and a leg. The word “noha” normally refers to the whole limb from the hips down. Medical terminology differs from this and the word “noha” means only the foot, and “dolní končetina” is used for the whole limb. Professor Kos has hammered this point home throughout multiple lectures and we were suspecting that if someone were to use the term “noha” in its colloquial sense during an exam, it would be an insta-fail.

Lower Limb Skeleton

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

Legs and feet are our means of movement, so they are very important. It is therefore important to look after them. Which, regarding the bones, means adequate exercise and not more than the body can handle.

What ordinary people do not usually know is that bones are not fixed structures. They are consumed from within and regrown throughout our lives. That way they can heal, but also change shape. That way they can also get injured in a rather peculiar fashion.

One of the stories Professor Kos was telling was a story of “march fractures”. Fresh army recruits, especially those from cities who were not accustomed to walking a lot, were often complaining about pains in their legs and feet bones after long marches. Initially they were deemed as pretenders becaue the x-rays looked normal, but some of them broke their legs when forced to go on. Then someone took a magnifying glass to an x-ray of the alleged pretenders legs and feet and noticed microscopic fractures developing before a clearly visible fracture occurred.

These are so-called fatigue fractures and they happen when a bone is deprived of nutrients. The bone continues to be consumed at a normal rate, but it does not manage to regrow back fast enough. Over time these tiny deficits accumulate and the bone starts to hurt and can even break.

A colleague of mine has developed just that in her foot during nordic walking strolls that were just a bit too much, too sudden and too long for her. It took a few weeks to develop and over a year to heal, with a surgery and a very long rehab being necessary.

Too much exercise is just as bad as none.

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”.

Cancer Chronicle Notes.

Not enough for a full chronicle right now, but some notes. We’ll start with an older thing that I forgot to mention way back, in the category of corporations going too far with the silly shit. After my port had been installed, mail pick-up included this stuff:

Yeah, I’m not going to become a cheerleader for your products. The most I want from your product is to no longer need it, in any way, shape, or form. I’m certainly not going to carry a card, put your little widget on my keychain, or wear a cheap bracelet. No rah! rah! here.

Side effects:

If one day you find that your fingertips feel calloused, and appear badly pruned, that’s the 5-fluouracil making your little fat pads disappear. Use a lot of good cream, which will help a bit, but not over much. The redness is cancerland normal too. They can get painful, so have a care if you can.

Okay, this next bit is sort of side effect too, I guess. If you’re an odd one like me, and end up with chemo induced constipation, old fashioned Milk of Magnesia is your friend. Your best friend. Works without inducing diarrhea, but it can take a while, especially if you end up with a blocked ostomy. Took one dose every day for 7 days with me.

In the category of things no one ever tells you about: projectile diarrhea, it’s a thing. When you have an ostomy, this can happen, and it’s a bad damn day when it happens while you’re unbagged. Happened to me right before I was going to apply a new bag. Your impulse is to jump away, stifle it, you’ll just spread the shit even further. If you have a towel to waste, you can grab one, hold it against yourself until you can get into the tub or shower, buuuuut, this happens remarkably fast, and you’ll be tempted to not believe your own eyes at just how much shit can come pouring out at a high velocity. There really isn’t any good way to prepare for such a thing, but it’s best to be aware that yes, this can happen. I can pretty much guarantee that when it does happen, you’ll be fresh out of a shower. And probably running late for an appointment.

That’s it for me today. Didn’t have chemo today, white count is too low, so I’ll be back next Wednesday for chemo, and I’ll be started on Neulasta injections to keep the cycles uninterrupted. I did get happy talk from my oncologist over being well hydrated; got the serious lecture about having no body fat at all. “If you dropped a knife on your abdomen, it would go straight through your intestines!” Good thing I’m not planning on dropping a knife on myself. Even so, the serious lecture means “stuff yourself silly” so I’m gonna go work on that.

Does 18 Make For A Shithole?

Esplanade Park in Helsinki. Finland, is the happiest country in the world, according to the newest World Happiness Report. Credit Martti Kainulainen/Lehtikuva, via Associated Press

Esplanade Park in Helsinki. Finland, is the happiest country in the world, according to the newest World Happiness Report. Credit Martti Kainulainen/Lehtikuva, via Associated Press.

According to The World Happiness Report, Ustates has plummeted to 18th on the list. If you really want to be happy and feel secure, you need to go Nordic. Finland made the top of the list.

Finland was ranked number one on the World Happiness Report, compiled by the UN Sustainable Development Solutions Network. The country was joined by other Scandinavian nations—Norway, Denmark, and Iceland—in the top four, followed by Switzerland, the Netherlands, Canada, New Zealand, Sweden, and Australia.

All these nations are based on strong social welfare structures, and look, people are happy! Looks like that evil socialism has a lot going for it. Turns out that when people feel secure, they tend to be happier and much more laidback.

“I think there really is a deep and very unsettling signal coming through that U.S. society is in many ways under profound stress, even though the economy by traditional measures is doing fine,” Jeffrey D. Sachs, an editor of the report, told the New York Times. “The trends are not good, and the comparative position of the U.S. relative to other high-income countries is nothing short of alarming.”

The drop followed President Donald Trump’s first year in office, during which the majority of Americans reported disapproval of the country’s top elected official, and hundreds of thousands protested his regressive policies on immigration, women’s reproductive rights, and gun control—as well as widespread concerns that the president is blatantly profiting off his position in public office.

The past year also saw reports of America’s widening wealth gap, with the average upper middle-class household holding 75 times more wealth than low-income families.

While other countries have focused on social welfare of all their citizens, Ustates has been in the process of removing rights and the very last shreds of social programs. We’re in the middle of dismantling education, nazis are running rampant all over the place, and you never know when you might be walking into a nightmare massacre. Sounds like a shithole to me.

The World Happiness Report ranks countries according to per capita GDP, social support, life expectancy, freedom to make life choices, generosity, and corruption levels.

Going by that alone, seems Ustates should be at the bottom of the list.

Life expectancy in the U.S. dropped for the second year in a row in 2017, with researchers suggesting that the opioid addiction epidemic and inequality are related to the decline.

I expect no health care has a lot to do with that one, along with a hefty percentage of the population living in food deserts and being unable to eat well.

Reigning political ideologies in the highest-ranking nations contrast sharply with that of the U.S., noted the researchers.

The countries in the top 10 tend to “believe that what makes people happy is solid social support systems, good public services, and even paying a significant amount in taxes for that,” said Sachs.

Yep. I’m more than happy to pay taxes, when they are used for the common good. That’s supposed to be the bloody point of taxes.

Every top-ranking country also ensures that every citizen has access to free or affordable healthcare, while millions of Americans remain uninsured despite the implementation of the Affordable Care Act.

Oh, there it is. Yep, other countries seem to have all figured out that having healthy citizens is to their benefit. That strikes me as simple common sense, but not here in Amerikka, no. I’m quite surprised we ended up as high as 18. Now I can’t get this song outta my head:

Via RawStory.

The Fight.

Finished! 18″ x 24″, pencil & marker on Bristol. Click for full size. I am so curious, so this is for everyone, not just fellow artists. For the artists, how would you depict cancer and chemotherapy? For all the non-artists, how do you picture things like cancer and chemotherapy? What shape do they take in your head? Prior to getting cancer, I can’t say I ever gave it any thought at all, and I’m not overly sure where the images in The Fight came from, they were just there. After trying to think about it for a bit, seems the main concepts in my head had to do with fluidity and a crackling electricity, mass power out of control.

© C. Ford, all rights reserved.

The Chemo Book.

This is all part and parcel of Chemo Brain. Being part of a clinical trial, I have to report to my research people after every cycle, and we get to go through a perfect storm of paper work, most of it having to do with tracking reactions and effects to treatment. Even if you don’t do this, it doesn’t hurt to try and keep track of side effects and how long they last. That can help you to bring up stuff you want help dealing with, and let your med staff know what’s going on. And, if your oncologist happens to ask, you have answers.  If you are in a clinical trial, keep the dates of when something begins and how long it lasts, your research person will wanna hug you for that.