New pain stuff

Went to see the pain dr. on Wednesday and he made some changes to my pain meds. I have been struggling since going off the steroids about a month or so ago (honestly, I can’t remember how long ago that was) for a couple of weeks only to have to go back on them. I never felt like I got really good control of the pain since going off. Mostly because I couldn’t get down from the three breakthrough oral pain meds every 4 hours routine, even with the steroids (and I couldn’t get to the point where lowering the steroids was a possibility either). I have been dealing with sleep issues because of it also, either not falling asleep till the am, or waking up early and having to eat to take meds and then going back to bed because I needed more sleep.

Then recently I have been dealing with the new pain patches, which are a different generic manufacturer and don’t stay on so well, are bigger so require much more real estate on my arm, and are generally less comfortable. With the warmer weather coming they become a visual issue also, they will be quite obvious on my arm and have black letters saying “Fentanyl” and the dose written all over them. Fun.

The other fun thing is the steroids. While they had been having a kind of reverse reaction for me all this time, when I went back on them this time they began to have more normal side effects. My appetite increased, I have gained a bunch of weight (not all of it thankfully) and my face is getting that steroid puffy roundness.

So anyway, I really have been doing okay with all of this, just taking it one step at a time, one day at a time, you know the drill. But I have felt that my pain was going up again and I was at the end of my being able to deal with it with the oral breakthrough meds. He felt exactly the same way and also really wants to get me off of the steroids. He feels an increase in pain meds is much safer for me in the long run than being on the steroids.

Soooooo, now I have three Fentanyl patches. With these new patches that means two on one arm and one on the other. I feel a bit like a freak, like I’m in the hospital with three IV’s in my upper arms or something LOL! I’m currently trying to decide how to approach this. I think I will ask the pharmacist if I have any alternatives in terms of brands and size, but I suspect that if I want to stay with that pharmacy (which I do because he is the only one who keeps these things in stock and it was bad enough trying to find 20 of them a month, never mind 30) I probably don’t. But we’ll see. Otherwise I think I am just going to have to endure my arm being plastered with patches and Tegaderm and possibly pieces of tape (as the patches begin to fall off on day 2 of 3 most of the time and this will likely get worse as the weather gets warmer and more humid, but I try to avoid tape if I can as it can make things worse and is uncomfortable). I already have to wear crops (pants a bit above the ankles instead of shorts) and closed toe shoes/sandals in the warm weather because I wear those heavy and quite obvious compression stockings for my lymphedema, I am not giving up on short sleeves! Thank god for central air conditioning. I don’t care what it costs (me personally or the environment) this summer, I am putting it on and keeping it on whatever temperature I need to keep myself from completely melting down.

So, the three patches have been on for over 24 hours now (they take about that long for an increase to get into your system) and it just amazes me yet again how strong my pain meds are and how I feel perfectly normal. You’d think I’d be a drunken sailor with all these drugs but I am not. My dr. is right in that when your body needs them for pain (in particular cancer pain) (and as long as you are taking the right amount of course and have gradually built up your dose, etc.) that you don’t get altered from them. Tonight I was able to cut back my oral meds by one pill. I am still feeling some pain but I am back down in the low numbers, the kind I can deal with. Yesterday was a bad day, so it feels all that much better being in the low numbers today. It kind of freaks me out that I am at such a level of pain that I can tolerate these incredibly strong medications, and not only tolerate them, but still feel pain in spite of them. It’s mind boggling. According to my dr. it’s not that I have become resistant to the pain meds either. Whew. It is hard for me to believe that I am ever going to get better (since I haven’t so far, in terms of the pain I mean) although my rad onc promised me I would. I just don’t know that I believe her. I try not to think too far ahead, and just keep myself in my day by day mode. If I need the pain meds right now, then I take the pain meds. Kind of like if I need the chocolate right now, then I eat the chocolate!

The other thing is that in about a week I’ll start to decrease the steroids. We are going to do it slower this time, 1mg at a time and at least 2 weeks at a time on each dose. I will be glad to get off of them. Maybe I will get my normal face back, I really do hate the round steroid look. It’s just such a big reminder of what my sister went through the last months of her life. I don’t know how it will affect my weight or my appetite, but I do suspect it will affect my energy. The one nice thing about them is that it keeps my energy level good. When I was off them those two weeks last time I could barely stay awake half the time. I would eat dinner and have my head in my placemat snoring before I could get up from the table every night.

So a new phase, we’ll see where this one goes. In the meantime I am putting my energies into helping A. plan our garden projects (I’ll try to post some pix soon) and other things inside the house. I am seriously considering starting making bread with the Healthy Bread in 5 Minutes a Day cookbook. I have always loved to make bread, used to do it a whole lot before Z. was born, but haven’t done much of it since then. When I do it’s been making the dough in the bread machine and mostly baking it in the oven, but I find that having the length of time I need to complete the whole process just doesn’t work out so I don’t do it. This should make the whole process much shorter (although not 5 minutes, but certainly much less than my other method) so much more doable as you make the dough, keep it in the fridge and then take out blobs of it, shape it, let it set a bit (I would say rise, but it doesn’t really rise outside the oven much) and bake it. I love various types of whole grain breads but the good ones are so expensive and require a trip to the bread bakery. We do this (and freeze some as we’ll overbuy on purpose) but if I can find some loaves we like that I can make it could be good. Z. is a bit fussy though, she’s not a white bread child thankfully (or she wouldn’t get to eat bread in this house as it is quite rare for a loaf of bread or even tortillas made with white flour to be in the house ever) but she doesn’t like “stuff” in it (seeds and grains, which of course is my favorite). So I’ll start with a plain whole wheat and see how it goes. Maybe have two different batches going. LOL, I’m getting ambitious here, I haven’t even made one batch yet, and we’ll have to see if I can manage to stay awake for the whole process once I’m off the steroids!

Okay, it’s late, off to bed now. I will post more about the garden along with pictures soon!

Read Full Post »

Sleep!

Last night I slept from around 11:30pm until about 7am. Sounds normal, eh? Well, it’s been weeks since I’ve slept anywhere near normal sleep time hours. The last few days I’d been closer to falling asleep by the time I woke up this morning than ending sleep. I did wake up every couple of hours or so to pee, but wondered each time as I made my way back to bed if I’d fall back asleep again or not, and each time I did. I could have slept longer if my back/hip/thigh wasn’t hurting, so I had to get up and eat breakfast and take pain meds. A. was nice enough to get up with me and eat breakfast with me (and Z. woke up not long after us and joined us). Felt almost like a normal family or something 🙂

Read Full Post »

Chocolate cake and pain

It’s been crazy hot here this week, up to 90 degrees! In April! We gave up and put the central air on yesterday and today. With A. working from home on the third floor, and me and my compression stockings and pain patches, being hot and sweaty just wasn’t cutting it.

Speaking of pain patches, I had a rough time of it the first part of this week. I’ve been kind of holding steady with my pain level since going back on the steroids a while back. Not getting any better, but not worse. My face has been getting “puffy” from the steroids, and I have been eating more and gaining weight (more like what it’s supposed to be like when on steroids, I had been having the opposite reaction for a long while though, losing weight and not eating too much). I’ve been getting comments on my puffy face from people lately. Kind of depressing. Anyway, as I have mentioned before it can be difficult to get the pain patch script filled and I recently found a pharmacy near the hospital that stocks them so got my last script there. Didn’t even dawn on me that they might be different patches (there are a number of companies making generic patches). So there are two issues, one the size of the patches is different (larger) so I can’t fit the two patches under one 4×6 Tegaderm bandage and need to use two. This means my entire upper arm has patches. This is quite noticeable when the weather is warm and I am not wearing long sleeves (so I’ve been wearing 3/4 sleeves in this heat to hide them). It’s not just the visual (the patches themselves plus the words that go across them saying Fentanyl Transdermal Patch System 100 mcg/hr) but the fact that when my shirt isn’t covering them they are more prone to peeling off (the Tegaderm is there to help keep them on, but that can also peel off and if it does it’s bonded to the patch itself so the patch peels off too).

So Sunday night at 3am I realize that we forgot to put on the new patches (and this is the first time for the new ones). A. has to help me get them on, it’s too easy to screw them up on my own. So poor A. is sound asleep and has to get up and try to help me and he can barely open his eyes. I was tired but hadn’t fallen asleep yet (it’s been hard to get to sleep lately and I’ve been up really, really late). We tried, but we made a mess with them. The old patches were thin and kind of glue like, like a clearish bandage. These have this cellophane quality to the plastic and a gel like layer inside the plastic outer layers. So it crinkles and it doesn’t lay flat very easily on my skin. By the next day after my shower I was having to put tape around the edges to keep them from completely falling off. As each day went by (they patches are worn for 3 days before changing) my pain was getting worse.

The night I was to change them I was in a bad way. We changed them and did a much better job of getting them to stick and lay flat, partly because we did it in the evening as usual instead of the middle of the night, partly because we separated the two patches from each other so the Tegaderm didn’t overlap at all (which meant that they pretty much cover my entire upper arm from my elbow to my shoulder), and partly because A. used a different method of applying the Tegaderm, kind of smoothing it from the center out to the edges really slowly. But the pain was still intense and by the next day I was getting worried.

That afternoon I called pain management to see if they thought there might be a difference in the different brands. The nurse said it was possible, that she had certainly heard people say they had this experience. She said if I was able to get the old patches that they could write me a new script but that the insurance company wouldn’t pay for a 2nd script (and they are quite expensive, I would do it rather than be in that level of pain for a few more weeks, but it wouldn’t be my first thing to try). So we decided I would call the pharmacist and see what they said. He said that the old patches were out of production (not sure I believe him, they are still listed on the companies website as a current product) and that they have the same amount of drug and no one else had complained (which doesn’t mean a thing). So I figured I wasn’t going to get anywhere with him (I had been hoping I could exchange the unopened boxes for the other kind). I called pain management back and we agreed that I should add another pill to my breakthrough oral meds. I took the extra pill that afternoon, ate some chocolate (seems to be the only way to even begin to get through bad pain for me 🙂 ) and went up to bed, laid on my heating pad and played computer games on my laptop for a few hours.

Amazingly by the time I got up for dinner the pain had decreased pretty significantly (and since then I have not had to take that extra pill). My guess is that those few days of the patches not laying flat I was getting less and less drug (the whole point of the patches is to have a consistent amount of pain meds going through me all the time) and even when I changed it and it was situated better I was too far gone at that point for it to kick in. It can take 12 hours or longer for something like an increased dose to take effect with the patches, so it made sense that it might take a while to get back to a therapeutic dose. I was so damn depressed that afternoon, it has been so hard dealing with the fact that my pain is at such a high level that I have to take this amount of medication, so to have even that not work was really upsetting. So my mood has increased tremendously since then. But I still can’t stop eating chocolate though. That’s the thing about chocolate, it’s an all around good thing for both bad moods and good moods.

It was A.’s bday this week and I made him a devil’s food cake with chocolate buttercream frosting and chocolate whipped cream layers (I made a half recipe in a 9×9 pan, cut it in half to make two rectangules and then split those into two layers, making a four layer rectangle “brick” as Z. put it). I make good tasting cakes, and the texture of the cake was wonderful, but I do not make pretty looking cakes. I am a mess at frosting (crumbs showing up while frosting and I can’t be bothered with the whole method of icing that prevents that) and the cake itself crumbled when coming out of the pan as it often does. But yum, yum, yum, the cake tasted great and A. was happy. We’re still eating it, even with the half recipe. It’s so rich that Z. and I split a piece and A. has a whole piece. There is still one piece left, the end piece with all the icing, so tomorrow night all three of us will split that piece. I love baking but hate making cake and various baked goods because they take so long to eat up and it’s impossible to resist them, but I have to admit that I have felt more enjoyment than guilt eating this particular cake this week!

Read Full Post »