CC Notes: When Prolapse Happens.

That ^ is what I got instead of surgery, for Six. Weeks. In case you missed it, after chemo on Wednesday (16th), a couple of hours later, my colostomy prolapsed. These are the basics of a prolapse, and no worries, no pics.

A prolapse is much more psychologically damaging than physical. This is not at all uncommon in colostomy or ileostomy, but no one prepares you for the possibility either, which is why you end up so damn shocked, and dealing with all the mental and emotional fallout. It would be most helpful if medical would prepare for this possibility, and yes, I know there’s no desire to alarm people, but that’s a bullshit excuse in this case. Being forewarned, just in case, would go a long way in making a prolapse less traumatic.

First thing: When Prolapse Happens: DON’T PANIC.

*:Graphic descriptors begin: When the pain reached a point where I lifted up my shirt in the car to see what was going on, I saw six very fat inches of my colon protruding, completely filling the bag, and rather than the bright pink/red she should have been, Grimhild was a faded pink, with sections so faded they were white. It was with absolute shock I was staring down, and then saw that shock mirrored in Rick’s face. Fighting panic, I choked out “can’t go home, ER.” Rick was doing his white knuckled best to not speed; fortunately, we weren’t far from the hospital. After waiting too long inside a triage room the size of a fucking closet, with tears running down my face, and trying like hell to breathe when my muscles completely seized (this was almost exactly like it was post-op, in recovery after the colostomy surgery, which was freaking me out), when a nurse finally came in. She got vitals, and info, and I got that all too rare experience of seeing shock on a nurse’s face upon seeing the prolapse. I was hurriedly taken into a room. The doctor was in quickly, and they were one I had seen before, which was a comfort. I was all hooked up to every fucking thing, then the doc started poking about. I couldn’t see what was going on, but Rick was watching like a hawk*, and the doctor was doing a form of massage, working the gut back in. Grimhild wouldn’t recede past around 2 inches, but that was normal enough. I was then sent for a CT scan, which revealed no blockage, but a parastomal hernia. It’s likely I would not have surgery at all if it was just a prolapse, but the hernia will require surgery. *Rick turned out be to be very skilled at doing this massage later at home, and teaching me how to do it. *:Graphic descriptors end:.

Most people with a colostomy or ilieostomy have minor protrusions now and then, generally during a movement, as that is the natural function of your gut, to be moving things along. Generally speaking, any abdominal pain associated with an ostomy is when a protrusion happens. If you note your abdominal pain increasing, check your ostomy- if there’s more protrusion than normal, the colour, and place your hand over to check for the normal warmth. If any of that changes (lengthier protrusion, faded colour, especially if it goes gray, and cold rather than warmth), get yourself to a doctor, stat. Don’t wait to see if it gets worse. Better to get it checked and not have anything to worry about.

If you’re like me, and this just comes out of the blue, and you’re faced with something which sends you into shock, get your arse to an ER immediately. If it’s taking too long to see you, start screaming. That won’t be difficult. If this never happens to you at all, that’s a great and grand thing. That said, it’s best to know this is a possibility, and to be prepared for it. It’s quite scary to see, especially if you are utterly clueless as to what’s happening. If you know this might happen, you’ll be much calmer. This is easily treatable, and in most cases not a surgical emergency, so you don’t need to worry needlessly about that, either. Most of the time, the gut is easily and gently massaged back in. In some cases, where’s there is an excess of fluid, you might note your doctor calling for sugar – don’t have an attack. This is a semi-standard trick to get a stubborn prolapse to retreat. Sugar is sprinkled on it, which absorbs the fluid, allowing the gut to retract. I do not recommend doing this at home, leave that to a doctor. This isn’t something you want to fuck up, and end up making things worse.

If you have a positional prolapse, where your ostomy is likely to start slithering out upon standing, walking, or other positions, you can easily cope with this at home. Lie down, and gently cup your ostomy through the bag, while gently pressing in and down, massaging her back in. You’ll most likely notice retraction beginning as soon as you lie down. When you get the retraction accomplished, when you get back up, keep your hand in place over your ostomy, then get a binder, belt, pants, whatever, placed over your ostomy, and carefully go about your business. It will take more than a bit of experimentation to discover just what does work for you when it comes to keeping your ostomy in place.

I did have a an abdominal binder order placed, went and got fitted (more or less), and wore it for a while on Wednesday, when we went out to eat, and on the way home. The binders aren’t exactly made for smaller type people, and really not for seriously skinny people. Mine is much too wide – it goes over my hip bones, and impinges on my breasts, so not overly comfortable to wear. It’s also very tight, which is to be expected. One worrying thing is that while eating, I could feel Grimhild trying to move, which is natural when trying to expel something, gas or more solid. The binder was preventing this, and that you don’t want. I’m not altogether sure just how much this would prevent a prolapse, either. So, at this point, I’ll save the binder for when I’m going to be quite active and out and about walking. When I’m sitting at my desk, and Grimhild is fresh from an active massage retraction, I’ve found that moving my chair right up to the desk edge, then placing a firm pillow between it and Grimhild, is sufficient to keeping her in place, while allowing for gas and other passage. Some people make do with large ace bandages, or find that a hernia or ostomy belt is more efficient; some people find that pants which cross the ostomy with a good pressure to be workable. It’s a matter of finding what will work best for you. If you use a latch or two part bag system, you might find it much more helpful to switch to a one piece, as the latch and two piece systems can cause injuries to the ostomy in cases of prolapse. While these injuries, usually lacerations, don’t cause any pain, they might lead to infection, which you do not need.

You absolutely must check the colour and warmth of your ostomy every single day, and it’s a good idea to do it more than once a day. Any changes whatsoever, get to that doctor. You’ll also need to monitor your overall temperature every day, and be good about it, because an infection is more likely in prolapse. If you head over 99, get to that doctor.

As always, as I remember all the stuff I forgot, I’ll edit to add at some point.

ETA: It now occurs to me that I was helping to move furniture a couple of weeks before this happened. In retrospect, that was a very stupid thing to do. Don’t be moving furniture.

The Healing Arts: Mixing A Recipe for Corns.

There will be much of George Cruikshank, caricaturist and printmaker coming up, but I felt this one deserved to be on its own, given the sheer amount of very weird detail. There seems to be an implication of witchery and/or paganism here. Interestingly, this one was one of the ones designed by Frederick Marryat, a British naval officer, and author. It’s interesting to note that In 1839, Marryat also published his Diary in America, a travelogue that reflects his criticisms of American culture and society. The book and the author were both subject to acts of violence, including the burning of the book and of Marryat’s effigy in public. It can be read for free at the link provided; I note that the e-books are also available through Barnes & Noble and Amazon.

There’s an astonishing amount of detail here. Note the painting hanging on the wall – an assault in progress. That earns a WTF? Then the Goddess detail on the mantel, with the dogs. Peacock feathers on the mantel, too. They were associated with witches, particularly those with healing arts. Then there’s the cat and dog, and screaming parrot, with the mouse in between. And what appears to be a Buddha on the mantel, and so. much. more. Click for full size!

Mixing A Recipe for Corns.

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.
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The Healing Arts: Les Mangeurs d’Huitres, La Luxure, Le Magnetisme, Les Lunettes.

Still with Louis-Léopold Boilly. I know La Luxure is supposed to be creepy, but Boilly outdid himself there. :shudder: But I do love Le Lunettes. All images, click for full size.

Louis-Léopold Boilly, Les Mangeurs d'Huitres (aphrodisiacs), Lithograph, 1825.

Louis-Léopold Boilly, Les Mangeurs d’Huitres (aphrodisiacs), Lithograph, 1825.

Louis-Léopold Boilly, La Luxure (Lechery), Lithograph, 1824.

Louis-Léopold Boilly, La Luxure (Lechery), Lithograph, 1824.

Louis-Léopold Boilly, Le Magnetisme (Hypnotism), Lithograph, 1826.

Louis-Léopold Boilly, Le Magnetisme (Hypnotism), Lithograph, 1826.

Louis-Léopold Boilly, Les Lunettes (Eyeglasses), Lithograph, undated.

Louis-Léopold Boilly, Les Lunettes (Eyeglasses), Lithograph, undated.

Head Full of Thorns.

I’ve had thorns in my head for well over a week, and finally got started on drawing yesterday, still not done on that front, but I had to play with colour a bit today. I’ve been working late, then falling into bed, not scheduling anything on Affinity, so if I’m late, or space out regular features, blame the thorns in my head. This one is going to take a long time, too. It’s large, filled with detail, and I’m going with pencil instead of paint, which is always slower for me. It’s been so long since I’ve been able to work, I’m now consumed with the need. Bad photo:

© C. Ford, all rights reserved.

The Healing Arts: Les Sangsues, La Gourmandise, La Felicité Parfaite, & Les Ivrognes.

Still with Louis-Léopold Boilly. Click for full size!

Les Sangsues, Louis-Léopold Boilly, Lithograph,1827.

Les Sangsues, Louis-Léopold Boilly, Lithograph,1827.

La Gourmandise, Louis-Léopold Boilly, Lithograph,1824.

La Gourmandise, Louis-Léopold Boilly, Lithograph,1824.

La Felicité Parfaite, Louis-Léopold Boilly, Lithograph.

La Felicité Parfaite, Louis-Léopold Boilly, Lithograph.

Les Ivrognes, Louis-Léopold Boilly, Lithograph, 1828.

Les Ivrognes, Louis-Léopold Boilly, Lithograph, 1828.

The Healing Arts: Consultation de Medecins & Les Grimaces.

I’ll be indulging in a highlight of Louis-Léopold Boilly the next day or three. Boilly was an incredibly talented artist, with an extraordinary gift for portraiture. Looking at his paintings, you get a strong sense that you should not be staring in the window, looking at these people, because there is a profound intimacy in his paintings. The Geography Lesson (Portrait of Monsieur Gaudry and His Daughter) is a good example of this intimacy. I also think his portrait of Robespierre is the absolute best. Boilly was a prolific painter, producing a great many small portraits as well as full scale paintings. When it comes to Les Grimaces, I like Les Grimaces 3 best. I think. All images, click for full size!

Consultation de Medecins. 1760, Lithograph, Louis-Léopold Boilly.

Consultation de Medecins. 1760, Lithograph, Louis-Léopold Boilly.

Les Grimaces 1, Louis-Léopold Boilly, 1823.

Les Grimaces 1, Louis-Léopold Boilly, 1823.

Les Grimaces 3, Louis-Léopold Boilly, Lithograph, 1823.

Les Grimaces 3, Louis-Léopold Boilly, Lithograph, 1823.

Les Grimaces 8, Louis-Léopold Boilly, Lithograph, 1823.

Les Grimaces 8, Louis-Léopold Boilly, Lithograph, 1823.

The Healing Arts: Mary Toft, Stones In The Head, Elephantiasis.

A new series! The Harvey Cushing/John Hay Whitney Medical Library has an absolutely astonishing collection of old prints and drawings, all to do with medical matters. There are exquisite anatomical drawings, drawings of hospitals, and the like, but I won’t be posting those. There are wonderfully satirical prints, interesting characters, and depictions of certain maladies, etc., of which, many tickle my fancy. We’ll start with Mary Tofts, who drew a great deal of attention, from on high to low in her day, for giving birth to rabbits. (All images, click for full size.)

Mary Tofts of Godelman the pretended Rabbit Breeder, mezzotint, John Laguerre, c. 1726.

Mary Tofts of Godelman the pretended Rabbit Breeder, mezzotint, John Laguerre, c. 1726.

Moving on to…head stones! :D

Loopt loopt met groot... [Operation for Stones in the Head], Laid, Claes (Nicolas) Jansz Weydtmans.

Loopt loopt met groot… [Operation for Stones in the Head], Laid, Claes (Nicolas) Jansz Weydtmans.

I’m not at all sure what this is all about, it doesn’t look quite like trepanning, but who knows? One very interesting thing about this is that it leads to a painting by Hieronymus Bosch, called Cutting The Stone, aka The Extraction of the Stone of Madness. It’s quite clear that Bosch is not being complimentary to the medical profession. The Band Wire did a song about the painting, called The Madman’s Honey.

Finally, we have a scary look at Elephantiasis, [Warning: A very graphic photo at that link.] a most dread disease back in the day. Note that the woman depicted has 6 toes on each foot.

Woman with Elephantiasis, Laid, Anonymous, Italian, 18th Century.

Woman with Elephantiasis, Laid, Anonymous, Italian, 18th Century.

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.

Signs of Life.

I managed a short wander today, might have pushed a bit too much. It’s still something of a shock that I have so little energy to expend, and have to stop and rest so damn much. The dizziness and ocular toxicity don’t help. Probably not a good idea to go wandering with just Jayne for company, but he did good today, sticking fairly close to me. Slowly, things are coming to life here. I saw one butterfly and one wasp, desperately searching for blossoms, of which, we have none. Surprised I got a shot of the wasp, I was shooting blind, into the sun. Most stuff under the fold, click for full size.

Box Elder Maple.

Box Elder Maple.

[Read more…]

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.