Sorry, gone for a while…

Chemo went fine, but a couple hours later (thankfully, we were binging at Goodwill and still in town) my abdominal pain went crazed, took a look to see Grimhild making a serious break for it, over 6 inches of my colon was protruding, so off to emergency. The doc managed to massage Grim mostly back in, sent for a CT scan, which showed no blockage, but I have a colostomy prolapse, and a parasternal hernia, along with chronic anemia. So, surgery tomorrow, and I have to be flat on my back, so no blogging. I shouldn’t be doing this right now. This is all the info I have right now, figure I’ll be missing for two to three days at the least. Oh, and trust me – you do not want to see a pic, you’d run screaming into the night. It looks like a zombie got a hold of me.

I’m so sorry, I’ll be back as soon as possible. Voyager & Charly, the blog is yours, have fun!

ETA: There’s a lengthier follow up here: CC Notes: When Prolapse Happens.
.

Goodies!

From Voyager & Jack, so very sweet of you! I was momentarily afraid Rick was going to just drink the maple syrup, then I tasted it…ohhhh. I’m gonna be wanting pancakes. And I just ran out of Burt’s Bees! I could never go wrong with Wonder Woman at my side, and my thanks for the tea! And all the rest – Rick gave me the raspberry & orange chocolates, and oh, I don’t even have words for how utterly om nom nom it is. Thank you so very much.

Cancer Chronicles 18: Water Is Life.

© C. Ford, all rights reserved.

© C. Ford, all rights reserved.

I am in full chemo brain space cadet mode, so this post will most likely be on the disjointed side. As of my last chronicle, I have been struggling with the cumulative effects of chemo. My 6th cycle was pushed back by a week, and I went in for IV fluids four times before that cycle. I cannot even begin to say just how much that helped. It upped my energy and my appetite, and I need all the help I can get with the latter. On Saturday (the 5th this month), I went for a very short walk. As short as it was, I could feel that I was pushing things too much. I ended up going into full collapse all of Sunday.

One of the more terrifying effects of chemo is getting hit with this overwhelming weakness. You find yourself unable to walk all the way across your dwelling without having to stop and rest. The idea of walking two blocks without resting several times is impossible. It’s difficult to describe just how bad it is. Normal movements are taxing to the point you can’t finish simple tasks like folding clothes or washing some dishes without taking breaks. The worst of that hit me back when I did the Neulasta, but its been lying in wait, and hit again after the short walk. All of which brings me back to hydration. After I had the four pushes of IV fluid, I felt close to normal. What used to be normal. Rick emails me every day while he’s off at work, to check in and see how I’m doing. One of his emails included this line: You seemed way more alive last night than you have in a long time! I sat for a long time, staring at that, overwhelmed with conflicting emotions. It drove home just how close to dead I’ve been, how…faded. It hurt like hell too, because it was a very sharp reminder of just how fucking rotten this has been for Rick, how difficult it is for him to see me mostly gone, and wondering if I’m still there, buried under all the side effects.  You can’t help feeling like you’re letting everyone down, including yourself. It’s very difficult to engage mentally and emotionally when you can barely bring yourself to move physically.

I’ve been steadily downhill since the walk, so Rick called infusion yesterday to set up fluids for Wednesday, but they said they could fit me in that afternoon, so off we went on Monday for another IV push. I could easily tell I was once again very dehydrated, because I didn’t have to pee. If my fluids are good, I have to race to the nearest lav as soon as I’m unhooked, and there have been times I’m off with IV pole, couldn’t wait. After the fluids today, we ran a few errands, and Rick once again remarked that the difference after I get fluids is night to day. For the last two cycles, I’m going to set up appointments for fluids on the Monday and Wednesday after my pump comes off. If you find yourself dealing with the terrifying weakness, you might want to holler for getting a series of IV fluids after a cycle.

We were sitting in the car in the market parking lot, having a sticky chocolate break before doing the market stuff, and I was telling Rick about how I had been feeling, that it wasn’t just the physical shakiness, which is still with me, but this loud, internal shakiness, all fizzy and overwhelming. Right away, he nailed what it was like – a really bad hangover. I haven’t had a hangover of any kind for a very long time, but the recognition was instant, it is just like that, the same dehydration and imbalance you get from drinking too much, when all you’re really capable of is sleeping it off. Chemo is mostly all “trying to sleep it off”, but that doesn’t work for chemo like it does for a hangover. This is not a matter of not having enough fluid intake, either. The chemo and the side effects dehydrate you to a point you could not drink enough of anything to bring you to proper hydration. I’m drinking something or other pretty much all the time, and still ended up like a walking piece of brittle kindling. Being dehydrated can also make your blood pressure plummet, so if you are getting consistently low reading like I was, look to get yourself properly hydrated, and your blood pressure will normalize quickly.

Dehydration also makes some of the side effects worse, like the skin peeling. It’s bad enough when you’re plump with fluid, and a nightmare when you’re all dried out. Scratching an itch will end up with your skin splitting open. I think that’s about it for now, my brain is jumping ship, and I need sleep. As always, if I have more to add, I’ll edit sometime today.

On a food related note, if you work in a hospital cafeteria, making the food and all, for the love of humanity, do not put effing cardamom in pumpkin pie! Also, if you grind the seed pod along with the seed, don’t ever touch the spice again. This comes up because last cycle, I was hungry, and Rick wandered off to the cafeteria to find something for us to snack on. We ended up with pumpkin pie that tasted like Vicks. Cardamom is a lovely spice, but if you don’t know how to use it, it’s a disaster. Chemo messes with your taste enough, getting a slice of Vicks pie doesn’t help. :D Speaking of, check out this Vicks ad, my my. (I did make sure it was that pie, not me. Afterwards, at the market, we bought a pumpkin pie, and it was just fine. I brought home another one yesterday. Turns out that it’s an easy thing to eat during chemo, and it’s cooling without triggering the oxali cold sensitivity.)

Water is life, and if you’re undergoing chemo, it doesn’t do to overlook the importance of it.

ETA: I’m actually cleaning today! And doing some laundry! Never thought I’d be so effing happy about that. Another ETA: If you’re in treatment or a caregiver who makes appointments, you do not need to go through any hoops to get fluids – just call infusion directly, and your grand and wonderful nurses will set you all up.

Home.

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.

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.

hg

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.