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.

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.

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.

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.

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.

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.

Cancer Chronicles 14: Chemo Brain.

Some of the stuff which goes with me on chemo days.

Seeing as today is chemo day, seemed appropriate to write about Chemo Brain. Yep, that’s a thing. Doesn’t set in right away, so you think to yourself that it’s just normal forgetfulness or spacing out. Then it gets more intense, by magnitudes of order. If you’re taking meds at the same time, you might seriously start to question your sanity or whether or not you have a brain at all. Chemo brain is one world class, gigantic brain fart. Generally speaking, being forgetful or zoning out isn’t a big deal, but it can be dangerous at times – being in the kitchen or driving, frinst. For the most part, it’s manageable. Start keeping lists, and write things down when you think of them, else it will be out of your head 5 seconds later, often to never return. So, first thing, get yourself a nice little notebook & pen, or a pocket recorder (or set up your phone or tablet for note-taking).

You don’t have to have extra stuff with you when you go for infusion, but a lot of people prefer to have the extras. First, catch your bag. :) What kind of bag best suits is up to each person, but if you’re looking around for a nice gift for a friend or loved one with cancer, or their caretaker, a nice, large bag with plenty of compartments and pockets is a good one. Ideas for stocking the bag: individual packs of tissues, cough drops or other hard candies, small pack of drinking straws, fragrance free lotion, folding headphones, pill case, notebooks or journal, pens or pencils, and if you know their taste in reading material, books and/or magazines. If they like to draw, a pad of good paper, pencils or markers. Drinks – you always need those. While there’s usually a good assortment available in most chemo suites, if you’re fussed, you can take your own. A bottle or two of Powerade or the like is welcome; I take a couple bottles of boost, and as we like good coffee, we take the giant Thermos with us. So, depending on taste, those are all good things to gift along with a bag. A special mug can be nice, too. I have my Fuel Rats, thanks to Marcus. If someone likes to knit, crochet, or embroider, a bag specifically made for that sort of thing is great. Rather than buying knitting/crochet/embroidery supplies, a gift certificate would be most welcome.

The more organized you can be, the easier chemo days go. Having a dedicated Chemo Bag can go a long way in easing the day, you just have to grab it and go. I end up having to switch bags about, depending on what I’m going to be working on that particular day. I usually prefer something smaller than my art bag, but sometimes, it’s the only thing for one specific day. So, getting everything together on Tuesday:

Getting everything nice and neat.

All set. Just have to remember to take the bag!

When your friend or loved one tends toward a complete blank on things, don’t be surprised, and please, don’t chide. It’s difficult enough realizing that your brain on chemo has more in common with Swiss cheese, and you keep wondering if you’ll ever get back to what passes for normal. Caretakers can help by keeping all the vital info, appointments, med lists, and all that stuff. It’s very important there’s back up on all that. Just today, I found myself so grateful Rick had put all the upcoming appointments on his phone, because I didn’t know where the latest raft of paperwork was, nor any idea of what time we’d have to leave in the morning. Turns out lab is at 9 am, so we have to leave at 7:45 am. It’s also very important to be extra nice and thoughtful towards your caretaker when they keep asking if you’ve remembered everything, because they aren’t trying to be annoying, so even if you feel like snapping, don’t.

Cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment – these are phrases you may hear from medical, and they all mean Chemo Brain. The primary problems are memory lapses, trouble concentrating or focusing, difficulty remembering names, dates, details, events, inability to multitask, disorganized, slower thinking, having difficulty with common words (can’t remember specific words when talking or writing). The problem with remembering common words has hit me particularly hard, and it’s been making me a bit crazed, sitting there, and trying to remember a word I know, and know well. In my head, I can see a circle of words, with a fuzzed out blank where the word I want should be. I often find myself starting a specific task, only to get distracted, start something else, then remembering and going back to the first, lather rinse repeat. It’s frustrating as fuck, and makes me feel very frazzled and stressed. Just getting through one day’s regular tasks is exhausting.

Naturally, chemo brain varies from one individual to the next, and while most people experience temporary effects, others end up with very long-term effects, sometimes to the point they cannot return to work. (If this is the case, disability applies.) The effects of chemo brain are amplified by every infusion and radiation. While the person undergoing treatment becomes aware of changes in their thinking, they may not say anything to anyone. This is not something which is terribly easy to talk about, and there’s a strong impulse to try and cover it up the best you can. As well as being frustrating, it’s deeply embarrassing. Technically, chemo brain is defined as a decrease in mental sharpness, which, along with forgetfulness includes difficulty in finishing tasks and learning new skills. While chemo brain is not fully understood, there is and has been research into it, and with most things, there can be a number of factors:

The cancer itself.
Other drugs used as part of treatment, such as steroids, anti-nausea, or pain medicines.
Surgery and the drugs used during surgery (anesthesia).
Low blood counts.
Sleep problems.
Tiredness (fatigue).
Hormone changes or hormone treatments.
Other illnesses, such as diabetes or high blood pressure.
Nutritional deficiencies.
Stress, anxiety, worry, or other emotional pressure.

One thing which has happened to me is a sense of mental exhaustion. Thinking has become difficult enough that I don’t really want to do much of it unless I have to do so. As tempting as it might be sometimes, to just sit in a corner and vegetate, that does not help. It’s important and helpful to stay engaged in one way or another. If you do social things on the ‘net, keep doing them. Read, chat with people. If you write on the ‘net, keep doing that too, even when it seems to be an insurmountable task. If you’re a reader, keep reading. Read, read, read. It does not matter if your reading speed has seriously slowed down along with your comprehension rate. The more you read, the more you keep that at bay, and make sure your brain is exercised. If you find you have trouble concentrating, try audio books. Listen to music. If you like puzzles of any kind, keep doing those too. Resist the quiet – I’ve gotten quieter and quieter, less likely to engage in a conversation because it’s difficult. That said, you need to encourage conversational fluency, and that won’t happen if you never talk. Make a list of your ‘failed’ words – the ones it takes forever to drag out of your brain, kicking and screaming. Refer to it when necessary.

Stop trying to multitask. Focus on one thing at a time, finish up, move on to the next. This really does not suit me, and makes me feel like I’m on a chafing leash, but you have to do what works and enables you to get things done. Lists – start lists for everything. Eat. A lack of nutrition does not help and makes chemo brain worse. Make sure you get a fucktonne of sleep. When things get too frustrating, wander off and have a rest. No one is at their mental best when tired, and treatment makes a person very fucking tired indeed. You don’t have to try to be Heracles doing the labours. Try to get into a daily routine, and keep it. This will make things much easier, and cut down on the stress caused by chemo brain. If you can, try to track the biggest problems, write down when you have memory lapses, and so forth. After a while, you might see a pattern emerge, such as the worst times being when you take a certain med, and so forth. That can help you to avoid scheduling things when you’re likely to be at a low point in mental abilities.

Maybe the hardest thing to do: tell people. Tell your primary caregiver, and let medical know. They can’t help if they don’t know. Don’t be all embarrassed to ask for help. Those who love and care for you will be most happy to be able to do something for you.  The other hardest thing: accept help. For a lot of us, that’s a genuine hurdle to overcome, but this is important, and you need to set yourself different limits from what you’re used to, and allow others to pick up where you leave off. Last, do whatever it takes to keep that sense of humour intact.

I have this nagging sense I’ve left things out, but I feel like that most days now. If I do actually think of something which needs to be included, I’ll do an edit late today or sometime Thursday.

ETA: If you’re in treatment, especially just starting out, it’s not likely anyone will mention Chemo Brain to you. So, know this: You are NOT crazy. You are NOT stupid. This is an actual effect of treatment. You’re most likely to first hear about Chemo Brain from others undergoing treatment. Don’t be afraid to bring it up with your infusion nurses, they can help.