Cancer Chronicles 21: Goop, Goodies, & Other Stuff.

Lots of photos with this one. I’ll explain in the captions.

The prescribed goop for malnutrition. Yeah, I know, Nestle. I'm not happy about that.

The prescribed goop for malnutrition. Yeah, I know, Nestle. I’m not happy about that.

My first goodies bag.

My first goodies bag.

When empty, a useful caddy, good for the shower.

When empty, a useful caddy, good for the shower.

Reach Program Stuff.

Reach Program Stuff.

Okay, let me start with the good stuff. Right now, this is the best I have felt in the last long seven months. My energy is great, I’m sleeping well, can’t stop stuffing my face. I gained 3 lbs, putting me at 95 lbs now! This is not to say it’s all been roses without thorns, but I will take every single good second I have, and be very happy. As far as the radiation goes, everyone is rather surprised that I’m over two weeks in, and not having any side effects. Again, I’ll take every day I get without them, and be happy about it.

I do need to correct one thing from the last chronicle. At that time, I thought the swelling I was experiencing was due to the veliparib. It’s not. Turns out that one of the less common side effects of the Xeloda (Capecitabine, oral chemo, converts to 5FU in the body) is swelling of the feet, ankles, and face. My facial swelling is limited to under my eyes, but that’s bad enough, makes me look like a bloodhound. The feet and ankle swelling, that’s a whole different matter. The swelling was getting severe, and you get numbness with it. It’s not fun to walk when you can’t feel your feet. I did accidentally find out that the longer amount of time between morning and evening doses helps to decrease the swelling. There’s nothing to do for it, except to have your dose reduced if it becomes too much. Mine is under control for the moment, and not having to take the xeloda over the weekend helps a bit too.  Another less common side effect is a runny nose, so if your nose starts inexplicably running, look no further.

Radiation makes any existing inflammation worse, if your radiation is targeting the area of inflammation. I was warned by my doc that my sciatica would be made worse, and yeah, it’s all woke and angry again.  Celecoxib (Celebrex) helps enormously, and can keep you walking around without wanting to scream. The morphine helps too, but it’s the anti-inflammatory which makes the difference.

Naturally, in the midst of all this happy “rats below, I feel…normal!” something had to intrude, enter Grimhild, who has been an absolute beast the last week or so. She’s busy trying to make a break for it yet again as I sit here typing. And what’s an unruly ostomy and abdominal pain without massive butt pain joining the party? Ugh. Shouldn’t last more than a few more days, I hope. These things come and go at intervals.

Okay, back to more fun stuff. After my radiation scan, I get a massage several times a week, which is very nice, and I’m going to miss that. My massage therapist is a lovely person, fun to talk with and with a fine sense of humour, too. Pretty much everyone at radiation has a good sense of humour, which is not one of those things you think about, but it makes one hell of a difference to your days. Last week, I met with the nutritionist, and got a lot of helpful suggestions, and a scrip for goop. It’s tasteless, and can be added to pretty much anything. When I’m at the apartment, I blend chocolate milk, boost, and ice cream with it for a shake. The goop alone is 330 calories, with added protein. Here at home, I just mix it in a tall glass of chocolate milk. My nutritionist told me I’ll have to have 2,500 calories to gain a pound, so it’s going to be a while before I get anywhere near my normal weight, but I’m working on it. If I just drink the goop once a day, it gives me a bit over 2,300 calories per seven days.

I’m also in dire need of strength training, which will aid my muscle mass and help me to keep the weight on. We’ve talked recently about joining a gym, but of course, we’ll probably only be able to attend one day a week, but that’s better than nothing. More on that in a bit. I was also very relieved when my nutritionist told me I didn’t have to pile on the meat, because I still tend toward queasy when it comes to a lot of meats. I have been craving steak lately though, and had one last night, and it went down fine, so I’ll keep eating steaks until I’m tired of them, and move on to something else. Even there, I’m fussed. The only steaks I like, regardless of cut, are those that Rick cooks. He cooks them perfectly, with the exact spice and flavours I like.

One thing which is made abundantly clear all through treatment is that you have to eat whatever you can, no matter what type of foods that might be. Early in treatment, especially during infusion chemo, don’t worry about nutrition, just eat as much of whatever you can. Also, pay attention to cravings, and give yourself whatever you end up craving. If all you can get down, for example, is ice cream and pizza, go for it. Don’t let anyone boss you around on food, either. With all the weirdness of side effects, you’re the only one who knows what you can handle and what you can’t.  Of course, your caregiver knows all this too, and make sure no one is trying to boss them around, telling them how and what to feed you. Politely or rudely, tell such people, well-intentioned or no, that it’s none of their business, and they don’t have the slightest fucking idea of what they’re talking about, so shutting up is the best option.

I also met with the person who runs the Reach Program, and she’s wonderful. Lively, and very fun to talk with, which is a good quality in a counselor. We got to talk for a bit, and she is a survivor, breast cancer in 2008. We had the same oncologist. She’s the one who gave me my goody bag, and gave me all the info on support groups and workshops. I did talk to Rick about going to the caregiver group, at least once, because it makes such a difference to talk with people who know what it’s all about. I might go to a group session or two myself. I am going to go to the ‘look good’ workshop because free cosmetics. Hundreds of dollars worth. That’s a lot of art supplies. I might even use some on my wrinkles. :D The counselor also told me about the Live Strong program at the Y, which we’re going to register for. The next one, if we get in, runs from September to December, two days a week. It’s you and one family member or friend. They have trainers who specialize in cancer patients, and all the exercises are specific to what cancer patients most need. After the class, you’re free to use the other facilities. Swimming! Hopefully, we’ll be able to get in, the classes are very limited, in this case, it’s 12 initial people, and their person. Whether we get in or not, the need for exercise is vital at this point, so one way or another, it will get done.

The one thing you can’t avoid with radiation is the fatigue. That’s the biggest side effect, and it will hit sooner or later. Just deciding that schedules and alarm clocks had to go for now has made a big difference for me. It’s more relaxing, and it lifts a pretty big burden off your shoulders, even if it didn’t feel like much of a burden before. Getting enough sleep is crucial, and even more so is that sleep is actually restful and restorative. If it isn’t, you definitely need to have a good talk with your oncologists, and find a way to resolve that problem. Whatever helps you to relax and refuel is good – whether that’s spending time in a hot tub, a spa, having a nice glass of wine or something else while watching the sunset, decadent hot chocolate with a stack of books and a pile of quilts, going canoeing, whatever, do it. Every thing you can think of which makes you feel relaxed and rested, it’s good for you, and this is the best reason you’ll find to indulge. This is very necessary to your health, so don’t go feeling all guilted out about or over any of it. It’s not just necessary for getting you through radiation, but this is restorative for the whole damn time you’ve been in treatment so far; it’s also adding needed strength for getting through the rest of treatment, whatever that might comprise. In my case, a rash of tests, a couple of surgeries, more tests, and four more cycles of infusion chemo. Just thinking about that shit is exhausting, so do what you have to do while you can.

It’s not just the physical fatigue all that will help, it will help with the mental and emotional exhaustion which is prone to hit during radiation. All of you needs rest and relaxation. Whatever is mental and emotional basketweaving, so to speak, for you is also necessary, and seriously helpful. Rick had a good time with that last week, when a couple of things came up with Harlan, needing to be fixed. He was telling me all about it, because we’ve always talked cars, and I’ve always been involved in the mechanical side, and he was having fun. It was really nice for him to have a day diving into some minor repairs which had a few challenging moments. This is important to remember too – you and your primary caregiver are two sides of a coin. I don’t know what it’s like to be a primary caregiver, and Rick doesn’t know what it’s like to be a cancer patient, but for all that, the stresses and problems you both experience have a whole lot in common, and caregivers need rest and relaxation too, just as much as you do. Having mental fun and time out is crucial for caregivers, and once more, if you happen to know someone who is a primary caregiver, please consider giving them respite in one way or another. Take them out, give them a gift certificate for a massage, or a fun time out, whatever you can manage. You’ll be doing more than you’ll ever know.

I think that’s it for now. As always, if I think of more stuff, I’ll do an ETA (Edited To Add) in the next day or three.

ETA: about the Xeloda…my chemo brain has been much worse than it ever was during infusion chemo. Naturally, I was told this was the complete opposite of most people’s experience.  If it happens to you too, at least you’ll know you aren’t alone. Rick and I came up with Chemorad Space™, which is primarily where I reside now. When I go blank, I just shrug and say “chemorad space”.

The Beautiful Town Idstein – Part 2 – Rathaus

Rathaus has of course nothing to do with rats, unless you mean politicians. Which would be insulting to rats, I guess. Rathaus is from german words for a counsel (Rat) and  a house (Haus) and means town hall.

The building is nothing extraordinary in the context of the town, but to the right side of it is a beautiful gate to the castle. Unfortunately you can only imagine the gate, because it was being  repaired at the time of our visit so I could not take good pictures of it . And I did not have time to spend with the various plaques around the staircase either.

Idstein Town Hall

Idstein Town Hall

Idstein Town Hall

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

 

 

Raturday.

Revisiting the original crew, they were 16 days old in these photos. I’ll try to name as best I can. And today’s music is something of a tie-in. :D

The front, l-r, Gytha, Oliver, Chester, Beatrice. At the very back, Giles, Agnes, Amelia, and Vasco, who are sitting on top of Neville. I think.

Basil. I think.

l-r, Giles, Agnes, Vasco, and the last two could be Oliver, Chester, Theo, Neville, or Dexter.

l-r, Amelia and Beatrice. Amelia was cute overload from the start.

Chester and Amelia.

© C. Ford, all rights reserved.

Behind the Iron Curtain Part 2 – Education

These are my recollections of a life behind the iron curtain. I do not aim to give perfect and objective evaluation of anything, but to share my personal experiences and memories. It will explain why I just cannot get misty eyed over some ideas on the political left and why I loathe many ideas on the right.

I was born towards the end of summer, which effectively means I was almost a year younger than many of other kids who were supposed to go to school that year. This has led to concerns whether I will be mentally mature enough to cope so I was brought in for preliminary evaluation in the spring prior to my first school year. I do not remember almost anything of it, only that it was a pleasant conversation with some old lady whom I did not know.

After I was deemed eligible, the education started. It was pretty normal as an education anywhere else at that time. Children sitting in rows in cheap, uncomfortable chairs behind small tables. Teacher standing in front of the class talking. Don’t talk unless asked, raise your hand if you want to say something or ask.

The regime had somewhat ambiguous attitude to education. On one hand it has recognized that knowledge is empowering and completely ignorant and uneducated populace is useless. Therefore eight years of elementary school were compulsory and the regime took pride in nearly universal literacy and numeracy.

On the other hand it has also recognized that educated and well-informed people are harder to control because they have that unpredictable tendency to be critical of the information presented to them and reach their own conclusion. which has proven correct, since the velvet revolution was initiated by massive student protests.

So the higher education was theoretically available to anyone who was capable, but there were caveats that had nothing to do with capability and everything to do with how much one was perceived to be a threat.

Ever since childhood I was recognized as a university material. I was top of the class and despite year-long health problems that impeded me significantly for a few years I did not need to repeat classes. My father was a member of the communist party and of Peoples Militia, and he was working class. This was considered a good thing in my yearly evaluations and was always mentioned together with my good notes. However one of my uncles was a political dissident who has emigrated to USA and was in the employ of US government. This was considered a bad thing although I was never told this and I only learned about this later on. Further, by a twist of destiny, my father, the communist, was the only one from the family who remained on good terms with his dissident brother. So there was always a big question mark about my future education and whether I will be allowed to pursue either my love of science or my passion for painting.

The regime seems to have had some sort of poorly thought out and poorly formulated concept of hereditary sin. Children and even grandchildren of aristocrats or bourgeois or anyone really even remotely related to dissidents were treated as a threat and were put under close scrutiny. As I grew older I learned about this and I have tried to understand it but I never did. It did not make any logical sense to deny someone higher education just because their grandfather was a bourgeois factory owner. They are not factory owner, they live in this wonderful socialist country where everyone is equal just like everyone else. They did not do anything wrong, their grandfather did. Where is the logic in this?

That way I learned there is another iron curtain in addition to the corporeal one in the forests. An invisible social barrier creating a tangled maze nearly impossible to navigate, because the rules were never clear and were subject to the whims of the powers that be. There was only one sure way to higher education, and that was being a relative of a high party affiliate. Everyone else could be denied for reasons they will never fully learn.

Luckily for me when I was a the end of elementary school, the regime fell and the Iron Curtain was torn down. And with it fell the artificial barriers that might prevent me from getting adequate education. There were other barriers still and new ones emerged, but that is a different story.

“You left us to die on battlefield like William Dafoe in Platoon.”

Oh my, the devoted, never say die Trumpholes are ever so upset, they have been betrayed! Even worse, they’ve been cucked by the Tiny Tyrant! Their tiny sky is falling.

Trump signed a $1.3 trillion omnibus spending bill at the White House this afternoon, which sent right-wing media figures who have established themselves as unabashed Trump defenders into a fit.

Earlier this morning, Trump had tweeted that he was considering vetoing the bipartisan omnibus spending bill because it did not address DACA recipients and lacked full funding for his promised southern border wall. Hours later, however, Trump signed the spending bill into law in what he said was a “ridiculous situation” and claimed he would “never sign another bill like this again.”

Naturally, pro-Trump pundits were furious that Trump had compromised with establishment Republicans and Democrats on a spending bill that appeared to contradict his campaign promises.

Just a few choice responses here, RWW has a full page of the wailing disappointment…

“I will never sign another bill like this again” Yeah, because you’ll be impeached. – Ann Coulter.

Disastrous decision @realDonaldTrump. The people advising u are idiots. Tough guy? Art of Deal? Worst negotiation EVER. U rolled over like a puppy to Marxists, frauds, traitors & corrupt greedy swamp. When I leave, u can turn out lights. #TRAGICMISTAKE – Wayne Allyn Root.

The title of this post was from yet another frothy tweet from Mr. Root, who couldn’t bother to get poor Willem Dafoe’s name right.

Well — @realDonaldTrump just signed his impeachment papers. The GOP will be slaughtered in the mid-terms. – Todd Starnes.

I have to say, I’m more than a bit amused. You can see all the other responses to this horrible betrayal at RWW.

A Wee Bit Late.

In his latest video, Lance Wallnau has a prayer:

“The left needs to shut up and Father, we just pray in Jesus’ name that your hand will be on this president and on his marriage and on his wife, that their ears will be deaf to the salacious, cruel accusations and toxic utterances that are coming at them from all directions. And I pray for a swift and speedy blocking of this subject from entering into the middle of the national narrative.”

You need to keep up, Lance. Rather late in the day to ask Jehovah to stomp all over Ms. Daniels. As for being salacious, cruel, and toxic, it seems the Tiny Tyrant has all those covered, with more to spare. It really takes a special kind of man to go out and cheat on his wife while pregnant, and after giving birth to yet another heir. That’s a particular cruelty, one which will reside in Ms. Tiny Tyrant’s head forever.

As for the national narrative, when has the Tiny Tyrant’s salacious, cruel, and toxic behaviour not been a part of it? Donny is guilty of sexual assault, sexual harassment, and cheating all over the damn place. That’s all on him. The man is a walking scandal of criminal activity. I can’t speak for all The Left™, but this little part of it is not going to shut up, so I’m afraid yet another prayer has fallen on deaf ears. The only reason the lunatic fringe wants this all hushed up is that you can’t stand people looking at your hypocrisy, supporting an adulterer in spite of your so-called morals and family values. Oh, that spotlight is hot, isn’t it? Unfortunately for you, right wing asshole christians are more likely to be lapping up every bit of, um, exposure given to Ms. Daniels, more than the average person. Fundamentalist christians have a fatal attraction to porn, and the more they yell about it, the more they are watching and listening. Repression never works the way it’s supposed to, and you’d think you idiots would figure that one out, but no. Even remonstrations use clickbait titles: Don’t watch super-whore Stormy’s interview!, knowing that ‘super-whore’ is a magnet to christians. So, it would be you fucking idiots feeding the frenzy you’re upset about.  If I were a god, I wouldn’t pay attention to you either.

That’s not all that Lance has been praying about:

Wallnau warned that if “the midterm elections prove that the fury and froth and madness stirred up by propaganda by the left” is effective enough to shift control of Congress, then this nation will never have peace or unity because “there is a corrupt root so strongly embedded” in the Democrats.

“I’m telling you now,” Wallnau declared, “the spirit of darkness wants to neutralize this presidency in September [sic] of 2018, but we decree and declare that there is a turning over of the tables for the sake of Jacob my servant, Israel my chosen, for that reason this man was given a title a honor as president. Though he did not know God fully when he started, he knows that there is a God of Israel right now. Father, we pray, though you have been a God who hides himself, that you will now reveal your arm and foil even the false signs of false prognosticators, counselors, coordinators and schemers working within the political apparatus, the media apparatus, the television, the entertainment, the grassroots organizing, even to dry up the resources of those who are using their wealth as a mechanism to choke the future of the United States.”

Y’know, it wasn’t that long ago we had democracy. Eight years of it. And while it wasn’t as good as it could have been (as with all things), it was pretty good. Made a lot of progress, and there wasn’t so much as a whiff of scandal of any kind. No porn stars, no hush money, no cheating, no sexual assault, no harassment, no mass amounts of criminal activity.  I’d be absolutely thrilled to have that again, and I’m hardly alone in that one.

“Though you have been a God who hides himself“, oh yes, for thousands of years! Actually, since this god was dreamed up and cobbled together. Nice of you to sort of admit it, Lance.

The full thing is at RWW.

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.
Infection.
Tiredness (fatigue).
Hormone changes or hormone treatments.
Other illnesses, such as diabetes or high blood pressure.
Nutritional deficiencies.
Age.
Depression.
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.

The Proud Party of Homer Simpson.

Ted Cruz pronounced that when it comes to protecting gun rights (and making sure rethuglican pockets are full of filthy NRA dollars), the republican party is proudly the party of Homer Simpson. This is an accidental honesty so full of irony, there won’t be a good irony meter left anywhere in Amerikka. Of all the characters you might wish to never identify with, it would be Homer. The perfect characterisation of a dumbfuck who manages to stumble by, somehow.

Conservative commentator Ben Domenech said that the current debate over gun rights was aptly summed up by an episode of “The Simpsons” in which Lisa asserted that the Second Amendment is “just a remnant from revolutionary days [and] has no meaning today,” while Homer insisted that the Constitution guarantees him a right to own a gun because otherwise “the king of England could just walk in here any time he wants and start shoving you around.”

There hasn’t been a king in England for quite a long time now, just in case that’s news to you fucking idiots, and I’m pretty sure the queen has no interest in shoving all you fucking idiots around. To continue taking this all too seriously, is whipping out a gun a reasonable response to a verbal ‘shoving around’? No, it isn’t. Guns are not a solution, they are the problem, writ large.

“I think the Democrats are the party of Lisa Simpson,” Cruz responded, “and Republicans are happily the party of Homer and Bart and Maggie and Marge.”

Uh huh. Did you actually watch the episode, Mr. Cruz? Because Marge and the kids moved out because Homer wouldn’t give up the gun. They were vehemently opposed. Leave it to a rethuglican to get an episode of The Simpsons wrong.

There’s video at RWW.

Cancer Chronicles 11: Home.

Let’s hear it for Sister Morphine.

The photo I couldn’t upload on Wednesday.

Home. When you show up for your labs/oncology visit/chemo, this is something you don’t want to hear: “Your labs are terrible! There is no way in hell you’re getting chemo today! You need to be in hospital.” :Considers running away again: “I’m going to stop meeting you like this if you keep putting me in hospital.”

Yes, I was very dehydrated, severe diarrhea for 12 days will do that, and I am not a good fluid intake person. The main trouble was that my liver enzymes were through the roof. Uh oh. My oncologist pinned his hopes on a possible bile duct stone, as I’m lacking a gallbladder. I doubted this was so; outside the constipation/diarrhea combination, I had no abdominal pain. Turns out this was so, a scan showed everything normal in that area. So, if this is chemo induced, I get kicked out of the trial, and switched to ‘traditional chemo’. I didn’t want to just do that, and neither did my oncologist, because there could be a couple of other factors: my obviously over the top reaction to the miralax, and the acetaminophen in my regular pain meds, which was quite increased from normal dosage due to very increased pain.

The GI doc and a couple of others who came to visit on Wednesday kept asking me about acetaminophen, specifically Tylenol, like I swallowed half a bottle every day for a hobby or something. So for now, I’m not taking anything acetaminophen based, gone over to morphine, my liver count was trending down very quickly, and the diarrhea has finally slowed down, so next week I’ll do chemo infusion two, just the same, stay off the acetaminophen for the following two weeks, then we’ll see what the labs say. Hopefully, I’ll be able to stay in the trial. I think I’ll probably win ‘exasperating patient’ of the year.

What is clear is that I’ll have to do all the stuff right from the start, low fiber diet, lots and lots and lots of fluid intake. My ostomy end is still not working, so I’ll need to see my surgeon again, too. I’ll admit to being somewhat afraid of the latter, because if I hear ‘hospital’ again in the next week or two, I might start screaming. I hate being in hospital, but I will say, for someone who hates it as much as I do, the nurses are always happy to see me, because I’m not the miserable asshole with them or any other medical folk. I always engage with them, and turn my humour to ‘extra high’, and I never ever have cause to complain about my treatment.

On Wednesday, I didn’t have my MRI scan until evening. Pick up arrived around 6 pm or so, and when I wandered out to the hall, there was a large man, dressed all in black, bristling with gear, looked like a cop, which took me aback a bit. The gurney was black, with enough straps to please a mad insane asylum director. I looked at him, looked at the gurney, and said “I wish I’d known, I would have put on my super villain outfit.” So, I got a ride in an ambulance to the MRI center. My first time in one, kind of interesting, and a nice break from hospital boredom. I was happily drugged for this scan, so I was able to lie still without much pain.

Odd things: my veins, which have never been what you call cooperative (I’m a roller), seemed to go on full strike on Wednesday. In the morning, getting my labs done, the needle goes in, nothing. The needle gets moved about quite a bit, nothing. Took about 20, 25 seconds for blood to show up. We had a good laugh about that, because it was really fucking weird. Later, in hospital, it was one blown vein after another. Much much later, talking with my oncologist, he was annoyed my port wasn’t used. So, I enquired about that (I had completely forgotten about the port myself.) One of my nurses told me they stopped using ports, because when they used them for everything, labs and IV, the rate of infections went up, and they got all the blame for it. Naturally, they weren’t happy about that, so they just quit using them. Can’t blame them, I wouldn’t want to blamed for that either, especially when every precaution possible is taken.

Thursday was one very long day, into evening, of sit, wait, and try to deal with deadly boredom. I wasn’t released until late evening, and I had to fight a bit for that, so by the time we got home, it was very late, and I swallowed some morphine and collapsed. Still not feeling great, but I’d much rather feel lousy at home. Jayne gets seriously unglued when I go missing, so I had to spend some time with him; he thought I smelled funny. The rats were all “oh Great Rat, serving wench, you are home! Feed us all the good things!” Grace and Vala just stared at me, then the empty tea dish, glaring at my compleat nerve at not being around to make sure they had their tea and pastry.

So, things should get back to normal here, for at least a while. One lesson learned: even on a routine visit, toss the packed duffel bag in the car, along with the secondary computer, cords, all that crap…just in case. Normally, I’d just toss it all in the car and leave it, but we’re still in below zero temps here. That can’t go away soon enough.

Colour Me Treasonous.

That godsdamned tiny, jumped up wannabe dictator is talking treason. Why? Oooooh, get this: people didn’t applaud.

Donald Trump on Monday suggested that Democrats could be guilty of treason because of their reaction to his State of the Union address.

Trump complained during a speech in Ohio that Democrats had not applauded during his State of the Union. The president said it was “un-American” of Democrats not to give him an ovation when he spoke about topics like unemployment.

“It was bad energy… even on positive news, really positive news, they were like death, and un-American,” he said.

“Someone said ‘treasonous.’ I guess, why not?” Trump added. “Can you call that treason? Why not. I mean, they certainly didn’t seem to love our country very much.”

“But you look at that, and it is really very, very sad.”

NOT ENOUGH FUCK YOU. Paint me treason colour, drape me in a treason flag, complete with all the treason accessories, and I’ll parade them all over the damn place. I already have one hell of an attitude going about all the tainted, toxic positivity crap, and now there’s this.

For the record, Donny Dipshit, no, you cannot call that treason. For fuck’s sake, have someone look it up in a dictionary and explain it to you, you brainless lump. “I guess, why not?” Aaauuuugggh. Because words have meanings. Concepts have meaning. You. Do. NOT. Get. To. Do. Whatever. You. Want.

There’s video at RawStory, if you want to punish yourself.

Cancer Chronicles 10: Standards & Stories.

Google Images, screenshot.

It wasn’t long ago I was moaning about the size of the chemo pump I get to be tethered to for two days per session. My friend who is also undergoing treatment told me their pump was more like an old Walkman, and electric rather than gravity fed, like mine. It’s also flat, rather than the silly giant capsule shape of mine. The above barely begins to cover all the different types, that’s not close to the whole page. Which leads me to wonder about standardisation, patient care, and patient outcomes. Whether or not you are paying attention to it, obviously everything about treatment has its effect on you, and user friendliness counts on some level, I’m sure. Of course, capitalism reigns supreme here in Ustates, and it’s quite apparent that there are plenty of chemo pumps all vying for attention and purchase. Obviously, more prestigious institutions with money behind them will have whatever is passing for the current state of the art and better design when it comes to patient point of view. Other institutions will have no choice but to go for cheaper options. And of course, there will be fingers, pockets, and the vagaries of salesmanship involved. Business is business, medical or not. What effect does this lack of standardisation have on patient outcomes, on the reputation of institutions? If I was given a choice, I would never choose the particular pump I’m saddled with. At the very least, I’d prefer something which could be carried at or below the waist. Oh yes, I’m sure they all get the job done, and the effect I’m talking about is certainly a small and subtle one, to be sure. Still, I can’t help wondering. Is this lack of a standard also prevalent elsewhere in the world?

ETA: I just didn’t have the energy to do this yesterday, but I talked about it in a correspondence with my friend in colon cancer treatment. Look at the people in that screenshot. Most of them with manic grins and poses, screaming “LOOK AT MY GOOD ATTITUDE! I HAVE POSITIVE!” Fuck that noise. I do not have a positive attitude. I don’t even have a good attitude. I have a shitty, cynical attitude, about most everything, and that certainly includes having cancer. If I lose that, I will be in serious trouble. My colon cancer friend is the same way. So, another little note: don’t go around telling a cancer patient something like “you have a positive attitude, and that’s the most important thing!” No, it’s not the most important thing. It’s not fucking important at all. What is important is whatever attitude your friend or loved one normally has is still intact and firing on all cylinders. If dark, twisted, gallows humour keeps someone going, don’t try to paint it pink with positivity. If razor sharp wit and observations keep someone going, allow that. It’s not up to anyone else to call the shots on what attitude will work best for any given person. As I said before, the person with cancer is still the person you know, they are still the same person they were before diagnosis; cancer is not a call to do a 360 on your personality and attitude.

I was putting off another chronicle for a while, which I’ll get to a bit later, but it turns out today is World Cancer Day. The whole thing is so damn Perky Positive that it exhausts me, but I will say this: If you’re putting off a standard screening, don’t. Grit your teeth, clear your schedule, and get it over with. It may well save your life. The people who love you will appreciate that. Yeah, it can be scary, no one wants bad news. No one wants that news. Nonetheless, Get. It. Done. If you’re stupid like me, and wait until pain shows up, it will be for  the worse. If you’re a younger person, and put off something like getting the HPV vaccine, stop that right now, and Get. It. Done. If you’re a parent, and you have not given this gift to your child, Get. It. Done. It’s much better to get that news when you have a good chance of survival. I’ve already known too many people who were dead inside six weeks of diagnosis.

Okay, stories. I was going to put this off until after the next session, but I felt compelled to write today because of the whole world cancer day thing. This involves chemo, having an ostomy, and rivers of shit. If you would rather avoid such shit, now’s the time to stop reading. My next chemo session is the 7th this month, the last two weeks have been a nasty hell spent in a river of shit. I’m exhausted, have next to no motivation to do anything at all, punctuated by bursts of explosive anger. It’s a kind of madness. I’ve had the interesting experience of having constipation and diarrhea at the same time. I don’t recommend it. Chemo turned the shit in my bowels to stone, it felt like I had a belly full of rocks. I waited a couple of days, to see if anything would move, nothing. Yeah, okay, so I take the recommended softener/laxative stuff. That was a fucking mistake. I turned into a skin bag of diarrhea, a spout stuck on ‘pour’. Thing was, this wasn’t coming out the ostomy end, oh no. My belly was still full of rocks, could feel them. This goes on for days. Now I’m taking stuff for diarrhea. Doesn’t work. I’m now on day 8 or 9 of leaking. It’s slowed down some now, and some of the rocks have exited the building, but not through the ostomy end. Feels like all I’ve been doing for over a week is cleaning shit: off myself, off the floor, off the toilet, out of clothes, out of underwear. The only thing happening there is Grimhild burping out farts on a regular basis, and Grimhild has a new trick of rapid shrinking down to flush with my skin, then popping back out again. I’m sure I’ll be having fun with my surgeon again this week. Obviously, stuffing my face like a victim of starvation after chemo is not going to be an option, because I cannot face another two weeks like the ones I’ve been through. Hello mostly liquid diet.

And then there’s the pain. Oh Sweet Crispy Christ, the pain. I have an abnormally high tolerance when it comes to pain, but even I have limits. Why in the fuckety fuck did no one arm me with pain meds before chemo? Why in the fuckety fuck am I going to have to bring this up? Suffering is not good for your nonexistent soul, it isn’t good at all. Out of my current doctors, only the radiation doc was familiar with the direct and referred pain caused by a colorectal tumour, and I’m wondering why. The pain has prevented me from sleeping, it’s woken me up from sleep. It overrides everything and leaves me wanting nothing more than to be unconscious. A low down (no pun intended, but…) colorectal tumour makes your tailbone a center of pain, it spreads out over and through the ilium, the lower spine, and puts amazing, blinding pressure on the sciatic nerve. It’s so gosh darn fun to get up and think you’re going to walk, and have a lightning strike of pain take your leg out from under you. That kind of pain momentarily shocks you out from under the dismal symphony of pain which has already become oppressively routine.

Sitting at my desk, staring off into middle distance, I become aware that I’m nodding along to the rhythm beat of pain in my lower spine rather than the music playing. Time for inadequate meds again. It’s a piss always having to be medicated, too.  Well fuck it, I have animals who would like to be fed, so I’ll go do that. For the record, rats totally win on the “oh gods, we are going to die right this second, pitifully, in your arms, if we aren’t fed immediately!” There’s nothing like walking in and seeing a group of boys standing up and reaching their little hands out like a chorus of Tiny Tims.

Cancer Chronicles 4: Pathology & Expression.

So…eventually, the path report makes its way to your door. Mine: Adenocarcinoma, moderately differentiated, with invasive feature and ulceration. Translation: invasive adenocarcinoma. There, that was easy. In my case, nothing I didn’t know already, but don’t get frittered by language. Look it up. If you have questions, write them down. Never be afraid to ask. The more you understand, the better you’ll be able to manage.

If ever there was a time to express yourself, this is that time. (You should be doing that anyway. Don’t wait til’ cancer comes knocking.) This is a good time to treat yourself a little. Doesn’t have to be major. I got a couple things at Big Lots:

© C. Ford.

You would not believe how incredibly obnoxious that pink nail polish is, dialed up to about nth. Everyone in the hospital loved it, kinda cheered us all up. Looks right good on the toes. Of course, for me, yet more art supplies. Got a lovely case of Daler Rowney pencils, which brings me to expression.

© C. Ford.

Draw. Write. Craft. Sing. Get your camera out. Make up new and awful fart jokes. Mortify your teenager by whipping your shirt open and saying “look, you were right, I’m full of shit!” Howl out your window and freak the fuck out of your neighbours. (They deserve it for those fucking fireworks after midnight anyway.) Something. Anything. I can’t quite do a nice bellyflop on my bed and play around with markers yet, but I’m working on it. Did you know you can get paper clips which are shaped like elephants? Make a chain of elephants. The list goes on. And on. Embrace all the moments. Even when you have a good prognosis in front of you, it doesn’t hurt to be aware of the clock. I was taking a whole lot for granted, and this has been quite the smack. And right now, I have a whole lot of rats who deserve a bit better from me, so I’m going to go and make them one hell of a salad. :D