Back home from chemo. I’ve done surprisingly well today, good energy, and constantly stuffing my mouth, which makes for a grand change. We had a leisurely time after chemo was done, around 3 pm. We stopped at the bookstore, and I brought home a stack of books, as usual. And then we had an exploratory trip through the new Co-op market, they have some very impressive produce at reasonable prices, so we’ll definitely be back. Then we did our regular market shopping and headed home. I’m hoping tonight won’t have any nasty surprises. Anyroad, I’m going to go cuddle up with a book and my giant glass of Nesquik/Malted Milk/Ovaltine. I am not setting my clock, so when I show up tomorrow, who knows, might be rather late in the morning.

As for the stack of books, none of these authors are known to me, so an adventure. I started Midnight At The Bright Ideas Bookstore on the way home because I am a complete sucker for any book which takes place in a library or bookstore setting. I’m not far in, but I already love many of the characters, and there’s a delicious horror-type mystery unfolding in this wonderfully odd bookstore.

I’ll see you all tomorrow sometime.

Cancer Chronicles 17: Struggling.

My new best friend, Immodium.

Things have not been going well. I am seriously struggling with treatment right now, and at least one thing is certain – I do not react well to being poisoned. The last cycle (5th) gifted me with acid reflux and heartburn from hell, vomiting, nausea, and severe diarrhea, much of which went on for over 10 days straight. Rather than having the 6th cycle last week, I was put on IV fluids for a week because serious dehydration. My last IV will be today, after seeing my pain management person. Then chemo on the 2nd of May. I’m not arguing against being pushed back anymore, particularly because I won’t even consider doing Neulasta again, that shit damn near killed me.

The pain is back, in huge red letters. Butt pain, back pain, sciatic pain, abdominal pain. I’m told the abdominal pain is a result of the chemo, nothing for it except to keep taking morphine, and whatever else in order to keep the morphine down. For most of my life, I’ve usually had very little in the medicine cabinet. The basics, toothpaste, deodorant, bandages, Ibuprofen, and little else. Now, I’ve accumulated so much crap to take, prescription and OTC, I don’t have room for it anywhere. Stuff to keep things down, stuff to plug parts up, stuff to loosen up bits, and on and on and on it goes. You’ll find yourself laughing with a scary edge when you figure out how much all this crap is battling against the rest, and you’re just hoping it all somehow works. I’ve found that standard doses of anything don’t tend to work when you’re in treatment. Well, they don’t work on me. I was recently prescribed Zofran (Ondansetron), and a word about it – it’s for nausea, and the tablets are supposed to be placed on your tongue to dissolve. Once again, I find myself wondering what the fuck people were thinking when they came up with this hideous crap. It’s exceedingly bitter, which I might have been able to handle, but in back of the bitter is this disgusting, fake strawberry cream flavour, and together it triggers a gag reflex. Not the best thing in an anti-nausea drug. You also can’t get the taste out of your mouth for love or money. So, if I need to take it, I lightly crush it, toss it in and wash it down. You aren’t supposed to do that, but it’s the only way I can get it to work.

The bottom line? Do whatever you have to do to deal with any side effects you’re experiencing. If you’re the quiet, doesn’t want to impose type of person, learn to talk your head off when it comes to side effects, there’s little point suffering in silence.

The other major obstacle I’ve been dealing with is a loss of appetite and the attempt to find food which tastes like food. During the latest diarrhea/vomiting phase, I dropped down to 92 lbs, which is seriously not good. I had no appetite, and couldn’t find anything I actually wanted to eat, most everything tasted like cardboard. This is not at all uncommon in those in treatment. When you lose the ability to discern tastes in many foods, you have to do some experimenting with foods and spices. Foods need to be spicy enough that they taste good, and not so spicy as to cause you even more trouble. Right now, for me, taco seasoning is working, along with refried beans, mild chiles, and ground beef. I hope it keeps working, else I’m going to disappear in front of my own eyes. Anyroad, making things a bit more spicy or eating somewhat pungent things (pickled veg, coleslaw, etc.) might help your appetite to wake up and gain a bit of ground. There are also at least a couple of ‘standby’ foods for most people – usually comfort foods which will stay stable in taste. One of mine is chocolate Malt O’ Meal. I have always loved that stuff, and still do. When I can’t get anything else down, I can manage the Malt O’ Meal. Cooking for yourself can be a bit tricky at this point, as the smell of cooking food can suddenly turn revolting. If your caregiver or others can do some cooking for you, so you have things you can simply heat up, that’s ideal.

Right about now in your treatment, when you find yourself struggling with side effects, and feeling more than half past dead, it’s really important to remember your caregiver, even when all you want to do is go collapse somewhere and sleep for a week. You need to remember that seeing you in such a state is tremendously difficult for them, and their feeling of helplessness and anger over that helplessness will seriously blossom at this point. Or, they might become quite depressed, which can be dangerous and needs to be addressed right away. It’s easy enough to understand the helplessness, those of us in treatment, we feel that way too as we have little to no control over what’s happening to us. It’s hard to acknowledge that though, on both sides, but it’s important to do.

I think that’s about all today, I have to be at pain clinic and infusion today. There might be a late start tomorrow.

ETA: I have been told that the Zofran oral dissolve does not normally taste so hideous. That would be the chemo messin’ about. Also, forgot yet another fun side-effect: my nails are peeling. Yes, this can happen, and you can lose nails, too. Taking Biotin in the hope it helps. Also, if you’re in treatment, and get to deal with diarrhea, your Doc probably won’t mention the Immodium Protocol, and yes, that’s a thing to make it actually stop, not a Ludlum title. ;) Ask, and someone will locate it and print it out for you. I have a print-out, but back home just now, going to collapse soon. Actually ate quite a bit today, so that’s a hurrah.

Dear Jim Bakker, Go Fuck Yourself.

Jim Bakker, a fan of the fanatical Jan Porter and her ‘heartbeat’ bill, has somehow come to the conclusion that there were two scientists who would have cured cancer, but they were aborted by evil wenches who had the unthinkable, autonomy. Naturally, Jehovah was the one who decided to “send” these two scientists, rather than doing something straightforward, like simply eliminating all cancers, which would be rather amazing, as it would require our cells to behave differently across our various lifetimes. Or Jehovah could have simply dropped a bit of super-duper brilliance on any of the current scientists researching cancer. Lots of choice there, to say the least.

Jim Bakker claimed that God has sent two scientists to earth who would have found the cure for cancer, but they were both aborted before that ever happened.

Bakker was interviewing extremist Religious Right activist Janet Porter and former Rep. Tom DeLay about their efforts to get Congress to pass Porter’s “Heartbeat Bill,” a radical piece of legislation that Porter brags will outlaw abortion “before the mother even knows she’s pregnant” and will be “the foot in the door” to eventually completely outlawing abortion. Bakker declared that Porter’s bill is “the most important thing going on in the world right now.”

Janet Porter is a dangerous fanatic, whose life desire is to stomp on women, ensure they will never have bodily autonomy, and she has no problem with women dying, she considers that suitable punishment for any women who dares to think her life is her own, and that she has the right to make her own medical decisions in privacy. If we actually had a government, rather than a regime, she might not be so worrying, but considering the regime currently in power, there’s a great deal to dread.

“This program could be an important cog to stop abortion in this country,” he added. “The thing we have done in America, we have killed our babies. We have killed the future of America. I told you the other day about a story, someone said they asked God, ‘Why haven’t we had a cure for cancer?’ And He said back, ‘I gave you two scientists that had the cure and both of them were aborted.’”

Oh FFS, the effing helicopter story. This is the stupid christian’s answer to anything and everything. I have seen and read so many fucking versions of that idiocy over the years, I’d like to cheerfully strangle the idiot who started it. Most christians think that’s just brilliant, which tells you a lot about most christians. As for a “cure for cancer”, there’s no such thing, and it’s not likely there ever will be. That’s because cancer is not one disease, it’s hundreds of diseases. Even within a category of a specific cancer, there are different types of that specific cancer. Cancers are born of cell mutations, and there have to be a number of different mutations before anything turns into cancer. Cell mutations often happen which don’t turn into cancer. Some cancers are easier to treat than others, and have a high remission rate. Research into cancer is constant, and it’s a never-ending race against time. A great deal of progress has been made, and a great many people are able to live their lives out, rather than die an untimely death.

For there to be ‘a cure’ for all cancers, that would qualify as a miracle, because no one treatment is effective against all cancers, that’s why current cancer treatments are targeted. So, Jehovah’s “two scientists” wouldn’t have been able to do shit where cancer is concerned. Once again, the sheer weakness and ineffectiveness of the christian god is what stands out. What’s the fucking point of being a god, if you go to the trouble to imbue a couple of blastocysts with miracle performance, but you couldn’t choose people who not only truly wanted a child, but had the necessary circumstances to have that child, and see that it gets a good education to boot? Or you know, wiggle a godly pinky finger and take care of the cancer business yourself?

To a christian, it doesn’t matter what the fuck happens in any given situation, their nasty, pointless god always gets the credit, especially when credit belongs to the people who make a life and death difference to someone.

As someone struggling with cancer treatment, this fucking attitude is infuriating, to say the least. A great many people over the years have helped to make brilliant leaps in treatment, and if I make it through treatment and come out clean on the other end, any gratitude I may have will belong to them, not the ugly ass god of christians. It is very christian to decide to use something like cancer to try to force the regressive oppression of women though, because cancer is still the big fucking scary, and too many christians are stupid and gullible enough to buy such awful dreck as some sort of skillful reasoning.

RWW has the story.

Off For The Day.

Yeah, it’s that time again. For once, we were scheduled for a decent time, and I took advantage to sleep in, heading out now. If all goes well, we’ll be back very late; if things don’t go well, I’m sure you’ll all hear about it. (I developed a…complication yesterday.)

Anyroad, I leave you all in the more than capable hands of Voyager & Charly. Have a good Monday, everyone.

CC Notes: Almost Back To Life.

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

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

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

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

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

Cancer Chronicles 16: I Just Don’t Care.


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.

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.

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.