Oh this brings back some memories.
Open thread, talk about whatever you like. Just don’t be an asshole.
Hey, Everybody! Sorry for the absence, as you can seem, my fingers are not in good shape. They are actually much worse than shown, I managed to take these photos several days ago. The list of things I can’t manage right now grows longer and longer. When they aren’t being incredibly painful, they go numb. Basically, every day I feel like shit, but it will be over soon, Monday the 6th will be my last day of radiation and capcitebine.
I’ll get back to blogging as soon as possible, I have to wander off to pain clinic now.
Recently, I’ve disappeared for a bit due to treatment; I’m afraid I’m going to be quite scarce over the next 10 days. I did have an excellent couple of weeks when I started radiation, and I remain grateful for that. If nothing else, that small period of time reminded me that a day will come when I can reasonably expect to be okay every day.
As for now, I’m dealing with being slammed with all the side effects. Palmar-Plantar Erythrodysesthesia has set in with a vengeance, making everything much more difficult. It’s very painful to walk or to even type on a keyboard. My fingers alternate between being completely numb or exceedingly painful. I did have a lot of numbness in the feet for a while, but they seem to be stuck on the ‘painful as hell’ setting for now. The hydrocortisone cream is for the fingers and toes, and it helps a bit. Had to give up the evening walkabouts because of the PPE and sciatica; and my fingertips hurt like hell dealing with my camera, so basically, I’ve been sitting like a lump on a log. I have been trying to get at least some artwork done, but that’s been quite the challenge with these fucked up fingers, so progress in that area has been a snail’s pace. I’ve also spent too many days bent over with severe abdominal pain, which gives rise to severe back pain, yada, yada, yada. I have a bunch of new meds to try and control everything, and had to switch anti-nausea drugs yet again, as it turns out that phenergan (promethazine) speeds up emptying of the stomach, which results in very frequent trips to the lav, when I need all that jazz to slow down. So now I’m taking compazine. The first dose was today, so I’ll see how that works out.
I have gotten through most of my treatment without major mouth sore troubles, but the 5FU got its way this time, and my mouth is a mess. The liquid lidocaine helps, oh but I don’t like the way it tastes! The lidocaine jelly pictured above, that’s for anal use. That part of my body is one sore, tender, burnt mess. I also have an aquaphor/lidocaine blend for that area. All of anus problems are down to radiation, everything else is from the Xeloda. The 5FU didn’t give me much of a problem when doing infusion chemo, while this prodrug form has a much more serious effect on me.
I think my level of fatigue throughout radiation has been better than most; I haven’t felt overwhelmed much, but I have needed more sleep lately, and I’m going to go ahead and indulge that need for the rest of radiation. Every day does see me deeper in Chemorad Space, which isn’t helping at all, I’m easily distracted, zone out constantly, and have a lot of difficulty concentrating on any one thing. It’s odd, getting such intense effects from this form of the 5FU. Naturally, I’ve been told most people have the opposite experience. Just call me contrary.
If I still had a lot more radiation to go, I’d no doubt be looking at a push back because of all the side effects, but both of my oncologists have been playing cheerleader, it’s only 10 more days, “you’re very brave, you can make it!”, which I have to say did make me laugh. Now, if I could just get a drug which would give me my brain back, I’d be in pretty good shape.
As usual, if something else occurs I should have included, I’ll do an ETA in the next day or two, and try to get stuff posted as well.
ETA: PPE is very unpleasant, and unfortunately, there isn’t much to do about it outside of not taking the offending agent anymore. In my case, that’s the capecitabine (xeloda). Your fingers and hands will swell, as will your feet and toes. (Xeloda also can cause facial swelling, but that’s not related to PPE). Your fingertips will often be bright red, sometimes fading to a dark pink. Your fingertips and soles of your feet will be excruciatingly tender, and just about everything is terribly painful on contact. Walking is painful, and I’ve found it easiest to settle on very comfortable sneakers with a good, cushiony sole. Your nail beds will be very sore indeed, so standard methods of cleaning nails have to stop, it’s best to get them clean by soaking in water. Your fingertips will alternate between “oh gods hurt!” and completely numb, which is challenging on a few fronts. Dropping things involuntarily will happen when you go numb, so it’s best to leave things like polishing your nails to someone else, unless you don’t mind making a mess with nail polish. Also, if you’re holding a drink, use both hands. You may notice skin discolouration on your hands and feet, that goes with the territory.
Have one of those little rubber gripper mats in the kitchen, as getting off even the simplest of caps can be painful and daunting. If nothing else, grab a washcloth to cushion your fingertips when trying to get caps off pill bottles, etc. Taking an anti-inflammatory like celecoxib every day can help a little; I don’t think the steroid cream does much, but you should keep your fingertips and toes lotioned up, so it won’t hurt to use it. Under all the swelling, the 5FU is still eating away at your fingertip fat pads, so stay well hydrated. Whatever your intake, it’s probably not enough. I know mine isn’t high enough now, so I’m scheduling more IV fluids. Basically, you need to stay well moisturized, inside and out. PPE won’t magically go away when you stop the chemo, it takes a couple of weeks for it to disappear, so you’ll need to take extra care for a while after you get to stop.
© C. Ford.
I’m so sorry, but I have been eaten alive by pain all day, and nothing has gotten it under control so far. Tuesday is the all day appointment day: labs/research/oncologist/Y program application/radiation/oncologist/caregiver group/possibly swimming if I stop wanting to scream, and probably more stuff I forgot. So I’m going to flake off entirely on Tuesday (17th).
If I somehow magically get the pain under control, I’ll show up. Right now, I can’t cope with sitting at all, so the thought of sitting down to do blogging is not a welcome one. My apologies, I hope this will be under control quickly, so I can get back to doing the things I love to do.
Lots of photos with this one. I’ll explain in the captions.
Okay, let me start with the good stuff. Right now, this is the best I have felt in the last long seven months. My energy is great, I’m sleeping well, can’t stop stuffing my face. I gained 3 lbs, putting me at 95 lbs now! This is not to say it’s all been roses without thorns, but I will take every single good second I have, and be very happy. As far as the radiation goes, everyone is rather surprised that I’m over two weeks in, and not having any side effects. Again, I’ll take every day I get without them, and be happy about it.
I do need to correct one thing from the last chronicle. At that time, I thought the swelling I was experiencing was due to the veliparib. It’s not. Turns out that one of the less common side effects of the Xeloda (Capecitabine, oral chemo, converts to 5FU in the body) is swelling of the feet, ankles, and face. My facial swelling is limited to under my eyes, but that’s bad enough, makes me look like a bloodhound. The feet and ankle swelling, that’s a whole different matter. The swelling was getting severe, and you get numbness with it. It’s not fun to walk when you can’t feel your feet. I did accidentally find out that the longer amount of time between morning and evening doses helps to decrease the swelling. There’s nothing to do for it, except to have your dose reduced if it becomes too much. Mine is under control for the moment, and not having to take the xeloda over the weekend helps a bit too. Another less common side effect is a runny nose, so if your nose starts inexplicably running, look no further.
Radiation makes any existing inflammation worse, if your radiation is targeting the area of inflammation. I was warned by my doc that my sciatica would be made worse, and yeah, it’s all woke and angry again. Celecoxib (Celebrex) helps enormously, and can keep you walking around without wanting to scream. The morphine helps too, but it’s the anti-inflammatory which makes the difference.
Naturally, in the midst of all this happy “rats below, I feel…normal!” something had to intrude, enter Grimhild, who has been an absolute beast the last week or so. She’s busy trying to make a break for it yet again as I sit here typing. And what’s an unruly ostomy and abdominal pain without massive butt pain joining the party? Ugh. Shouldn’t last more than a few more days, I hope. These things come and go at intervals.
Okay, back to more fun stuff. After my radiation scan, I get a massage several times a week, which is very nice, and I’m going to miss that. My massage therapist is a lovely person, fun to talk with and with a fine sense of humour, too. Pretty much everyone at radiation has a good sense of humour, which is not one of those things you think about, but it makes one hell of a difference to your days. Last week, I met with the nutritionist, and got a lot of helpful suggestions, and a scrip for goop. It’s tasteless, and can be added to pretty much anything. When I’m at the apartment, I blend chocolate milk, boost, and ice cream with it for a shake. The goop alone is 330 calories, with added protein. Here at home, I just mix it in a tall glass of chocolate milk. My nutritionist told me I’ll have to have 2,500 calories to gain a pound, so it’s going to be a while before I get anywhere near my normal weight, but I’m working on it. If I just drink the goop once a day, it gives me a bit over 2,300 calories per seven days.
I’m also in dire need of strength training, which will aid my muscle mass and help me to keep the weight on. We’ve talked recently about joining a gym, but of course, we’ll probably only be able to attend one day a week, but that’s better than nothing. More on that in a bit. I was also very relieved when my nutritionist told me I didn’t have to pile on the meat, because I still tend toward queasy when it comes to a lot of meats. I have been craving steak lately though, and had one last night, and it went down fine, so I’ll keep eating steaks until I’m tired of them, and move on to something else. Even there, I’m fussed. The only steaks I like, regardless of cut, are those that Rick cooks. He cooks them perfectly, with the exact spice and flavours I like.
One thing which is made abundantly clear all through treatment is that you have to eat whatever you can, no matter what type of foods that might be. Early in treatment, especially during infusion chemo, don’t worry about nutrition, just eat as much of whatever you can. Also, pay attention to cravings, and give yourself whatever you end up craving. If all you can get down, for example, is ice cream and pizza, go for it. Don’t let anyone boss you around on food, either. With all the weirdness of side effects, you’re the only one who knows what you can handle and what you can’t. Of course, your caregiver knows all this too, and make sure no one is trying to boss them around, telling them how and what to feed you. Politely or rudely, tell such people, well-intentioned or no, that it’s none of their business, and they don’t have the slightest fucking idea of what they’re talking about, so shutting up is the best option.
I also met with the person who runs the Reach Program, and she’s wonderful. Lively, and very fun to talk with, which is a good quality in a counselor. We got to talk for a bit, and she is a survivor, breast cancer in 2008. We had the same oncologist. She’s the one who gave me my goody bag, and gave me all the info on support groups and workshops. I did talk to Rick about going to the caregiver group, at least once, because it makes such a difference to talk with people who know what it’s all about. I might go to a group session or two myself. I am going to go to the ‘look good’ workshop because free cosmetics. Hundreds of dollars worth. That’s a lot of art supplies. I might even use some on my wrinkles. :D The counselor also told me about the Live Strong program at the Y, which we’re going to register for. The next one, if we get in, runs from September to December, two days a week. It’s you and one family member or friend. They have trainers who specialize in cancer patients, and all the exercises are specific to what cancer patients most need. After the class, you’re free to use the other facilities. Swimming! Hopefully, we’ll be able to get in, the classes are very limited, in this case, it’s 12 initial people, and their person. Whether we get in or not, the need for exercise is vital at this point, so one way or another, it will get done.
The one thing you can’t avoid with radiation is the fatigue. That’s the biggest side effect, and it will hit sooner or later. Just deciding that schedules and alarm clocks had to go for now has made a big difference for me. It’s more relaxing, and it lifts a pretty big burden off your shoulders, even if it didn’t feel like much of a burden before. Getting enough sleep is crucial, and even more so is that sleep is actually restful and restorative. If it isn’t, you definitely need to have a good talk with your oncologists, and find a way to resolve that problem. Whatever helps you to relax and refuel is good – whether that’s spending time in a hot tub, a spa, having a nice glass of wine or something else while watching the sunset, decadent hot chocolate with a stack of books and a pile of quilts, going canoeing, whatever, do it. Every thing you can think of which makes you feel relaxed and rested, it’s good for you, and this is the best reason you’ll find to indulge. This is very necessary to your health, so don’t go feeling all guilted out about or over any of it. It’s not just necessary for getting you through radiation, but this is restorative for the whole damn time you’ve been in treatment so far; it’s also adding needed strength for getting through the rest of treatment, whatever that might comprise. In my case, a rash of tests, a couple of surgeries, more tests, and four more cycles of infusion chemo. Just thinking about that shit is exhausting, so do what you have to do while you can.
It’s not just the physical fatigue all that will help, it will help with the mental and emotional exhaustion which is prone to hit during radiation. All of you needs rest and relaxation. Whatever is mental and emotional basketweaving, so to speak, for you is also necessary, and seriously helpful. Rick had a good time with that last week, when a couple of things came up with Harlan, needing to be fixed. He was telling me all about it, because we’ve always talked cars, and I’ve always been involved in the mechanical side, and he was having fun. It was really nice for him to have a day diving into some minor repairs which had a few challenging moments. This is important to remember too – you and your primary caregiver are two sides of a coin. I don’t know what it’s like to be a primary caregiver, and Rick doesn’t know what it’s like to be a cancer patient, but for all that, the stresses and problems you both experience have a whole lot in common, and caregivers need rest and relaxation too, just as much as you do. Having mental fun and time out is crucial for caregivers, and once more, if you happen to know someone who is a primary caregiver, please consider giving them respite in one way or another. Take them out, give them a gift certificate for a massage, or a fun time out, whatever you can manage. You’ll be doing more than you’ll ever know.
I think that’s it for now. As always, if I think of more stuff, I’ll do an ETA (Edited To Add) in the next day or three.
ETA: about the Xeloda…my chemo brain has been much worse than it ever was during infusion chemo. Naturally, I was told this was the complete opposite of most people’s experience. If it happens to you too, at least you’ll know you aren’t alone. Rick and I came up with Chemorad Space™, which is primarily where I reside now. When I go blank, I just shrug and say “chemorad space”.
A bit of fatigue is setting in from radiation, so I’m going to kill the alarm clock for the next several days, and sleep until I’m done, so things will most likely be starting late on Affinity for the next little while. Voyager and Charly of course, will continue to post whenever they feel like it – I’m just going to join in with them for a bit, and say the ‘hell with discipline’ for now. :D
I won’t be around in the early morning at all (Tuesday / 10th), but I will get stuff posted somewhere in the neighbourhood of 10 or 11 am. Oncology had a difficult time squishing me in, so have to be at the hospital by 8am. Blah. Grimhild is giving me serious grief today too, so I’m taking meds and I’m going to sleep to very last moment I can come morning. Sorry for the bump, things should get back to normal after tomorrow. I hope.
Tomorrow (Monday, 7/2), I have to get packed up and head back to the apartment and treatment, so posts will be on the light side. I have some stuff scheduled, but everything else will have to wait until I’m settled again, and we have much to do all day tomorrow, so I won’t have much time until Monday evening. Things might start late on Tuesday, and that could be a super light day, because I’m fully booked with appointments from 1:15pm to 4pm.
For everyone who has sent something recently – I will get around to posting everything, and I will get back to you via email. Right now, everything is split between two computers, and I managed to not get everything on the effing USB stick (chemo brain strikes again!). I apologize if you’re having a wait or think I’m just ignoring you, I’m not, I promise.
I’m not exactly in a position to get bird shots right now, so if you all have birds, please send them along, with my thanks! There are birds flitting about the cancer center, but I haven’t had time to camp out and try to get photos yet. I’ll work on that this week, now that I’m feeling better.
And again, I cannot thank you all enough for the constant support you provide to me. I would be in a much worse place without you all.