My Husband, My Life, My Love, My Family, My Cancer
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Denny, at least I don't need to buy anything this week. I feel miserable this week and especially this morning, peed my pants before I could get to the toilet, ewww, thankfully was not in bed so more laundry to do. Assuming the meds will work throughout the day as has happened but really tired of it.
I am starting to feel a bit better, definitely a phlegmy cough though it appears to be upper respiratory, will just keep up with the meds at home. I did a rapid test for covid but it came up negative so thinking I just managed to catch a cold and it has been more than a year so that is good. No fever or severe fatigue nor stomach issues. Just got to stop being a whiner about it. I can do cancer related stuff no problem as it comes up but get struck with a cold, end of the world to me. So dumb.
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Denny10- great post! I don’t like to take meds of any kind. Never have. So the idea of taking anti-diarrhea meds daily is/was a big no for me mentally. As long as I am home, I can “run” to the restroom as needed. When I have to go out, I do like you wrote: start the morning with Lomotil. Take another pill like Imodium just before leaving. I carry extra pants, panties, zip lock bags, wipe, etc. in my purse. Have had 1 incident while en route to a scan where I didn’t make it to a bathroom. Hated that. Don’t want to do that again BUT don’t want to become constipated either. Fine line/balancing act.
I just have to listen to what you wrote and see if taking an anti-diarrhea pill each morning and see if QOL approves and see if that would allow me short trips from home.
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dodgersgirl, I suffer with constipation too. It's like walking a tightrope, balancing the 2 extremes . Oat bran with cereal , prunes and prune juice , a daily apple and senna if necessary some days and anti diarrheals on other days. Stir in chemo and steroids; my gastric passage doesn't know what's going on, but the alternative is not worth thinking about
Any tips appreciated . I hope you find your balance.0 -
myrilax daily keeps me running smooth it’s torture to balance all of this. Ugh!
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Denny - that's exactly the message I was trying to express, but evidently I didn't say it well.
BTW- A gastroenterologist told me I had IBS years ago. I accidentally discovered Vitamin D (prescription 50,000 i.u. weekly) would knock out a flare-up for me. I switched to 125mcg (5,000 i.u.) of D3 daily and rarely had a problem until starting going on Verzenio. Maybe something for your son to ask his consultant about? ( I have also heard another GE recommends it for his patients.)
Mara - common cold, or not, it still makes you feel like crap. I hope you're feeling better soon.
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When I started this not-fun journey, I took Colace to prevent constipation. Worked for me.
Then had rads to my acetabulums which spilled into my colon, killing gut bacteria. This landed me in the hospital for a week as I was having up to 24 BMs a day. Verzenio, Ibrance, and Xeloda all shared diarrhea SEs with me!!!
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I have wondered for a long time if I could have IBS. I have 2 other autoimmune disorders, and IBS is an autoimmune disorder, I think. I have never been to a GI specialist and my PCP has never diagnosed me. But I wonder.... I have had a weird GI system for years, but these cancer meds just make it worse.
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Candy, it may be worth it to get a referral to the GI doc to find out if this is an issue, more info equals possible solutions and diet restrictions.
Well, lost my voice which is fine, don't talk much to anyone, still taking advil, tylenol and expectorant in the daytime, gargling salt water. Been over a year since I have had a cold so guess it was time. Still Covid negative according to my test today which is good. I don't feel so bad today but no improvement either. Will keep on keeping on and walk on the treadmill since my chest itself does not feel congested, all upper respiratory in the throat area. Going to also eat better, last couple of days, been lazy about laundry and housework including cooking meals. Beans and eggs are the order of the day I think along with treadmill to keep everything moving around.
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Mara— hope your cold resolves quickly.
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I think I am hitting the worst of it, luckily it is not affecting my appetite. Making sure that I eat properly today with beans and beefless ground. I basically ate egg mcmuffins from mcdonald's and hash browns but need the iron. Lots of advil and gargling with salt water along with buckley's too.
Nothing going on today, thunderstorms happening through out the day. Catching up on laundry and making more foaming soap. Just taking ordinary liquid soap, putting 1 part foaming soap to 4 parts water. It comes out extra foamy and will last so long, it is awesome and can create soap for less money than bath and bodyworks stuff.
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Mara- have you written down all your “recipes”?? I am sure many people would be interested especially as prices keep clim
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Candy~I have begun to have trouble myself. It’s no picnic with these cancer drugs. They wear you out and you don’t even do anything. It’s a very uncomfortable thing the inconsistency of it all.
Mara~ I’m sorry you’re feeling bad. I hate when I loose my voice. It’s not like I have important things to say but it just feels weird. I hope you feel better.
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LOVE!! Thunderstorms….
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The weather calmed down for me here finally but I wound up napping a bit on the couch this afternoon between sneezes. After a ton of sneezes, my voice came back somewhat enough to let me talk to the wellness check lady.
Dodgersgirl, I don't have anything written down but the mainstays are black beans, beefless ground and pasta and white rice along with eggs. Eggs and baked beans feature heavily, 1/2 cup black beans to go with two eggs, adding salt and steak seasoning as well as a bit of sour cream. Most meals also have wheat bran for fiber though that is not strictly necessary. My toppings include ketchup, mustard, sour cream and queso as they are all lower calorie. You do not have to bake the black beans if you don't mind chewy beans and sometimes they are fine. Canned vegetables are fine, usually get corn medley type stuff. I am straying away from mayo and salad dressing due to the calorie count. Seasoning figures heavily as well. I mostly enjoy steak seasoning or taco seasoning with a bit of italian too. If I ever make the cottage cheese pancakes, I will post the recipe here.
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just had a huge post. Lost it somehow. Grrrrrrrr
Feel better Mara.
Candy. Hugs. BooBoo.
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Mara— thanks!
Love the soap ideas you mention, too
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Well, the soap works well for hand soap mostly. You can use bodywash or normal liquid hand soap. Ratio is 4 parts water to 1 part soap. I usually heat up the water a bit and then add the soap after heating, stir it around a little bit with a spoon and fill a foaming soap dispenser. You save a lot of money on soap and hands get just as clean as store bought foaming soaps. I use foaming soap like this as well for dishwashing as it degreases the pans very well.
Mel, I am sorry you lost a long post, that is a PIA when it happens.
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I still have the cold but my voice is back. Going to go as long as possible without taking anything to relieve symptoms as I think all of it is making me just as tired. I don't feel miserable today so that is good. I think it will be gone likely next week. Just take medicine at night. I slept well. Sticking to chores and possibly grocery shopping where I always mask up anyway. Household chores have to happen first however. Walking, at least in house needs to resume as well, both the marching form as well as the treadmill. Now that someone is living below me, I will need to march on the stepbench I have so I am not noisy.
Sent another email about the lack of mail, what the post office needs to have put in which is just a lock box so they can get in the front door and reminded them it has been several months and that if they did not get mail, I am sure they would be upset about it. Reminded winter is coming on. Keeping my mouth shut has not worked so will keep on their back. They do not even clean the building for pity's sake. Not angry or stressed by should keep reminding we need mail.
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Wow, I just came back in from vacuuming the hall on my floor as no one else does it and I found several nails and screws on the floor. We really do live with slumlord, no cleaning of the building whatsoever. I am not confident that if something breaks they will even fix it. All I can hope is that housing kicks in soon vs later. I shudder to think how they will look after the property in winter.
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Mara, did you ever get anywhere with social services about another place? I am worried that if something breaks or if your heat is broken somehow that you will be left to suffer. I seriously want to call your landlord and give him/her a pieceof my mind. It's wrong—and especially because you have Stage 4 cancer, to treat you like this. Urrr…
Mel, hope you are doing well. Have any new pics you've painted to show? I am so impressed with how your other ones look. I really would frame them and put on my wall.
Update on me: my oncologist has stopped the Faslodex shots…she said they are not working. She turned me over to Palliative Care for now (hospice is next). The Palliative Care team has been trying to help me with pain management, and it's crazy how much OxyContin I am on. I'm still not pain free, but that is not going to happen. Bone pain as deep as mine goes is hard to treat, or at least hard to get under control. It's taken a lot of tries but I think it's as good as it gets. I am okay with some pain, but not the levels I've been experiencing.
Love to all.
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Laurie, the waiting list is so long, would be years before I could get into a place even with Stage IV. I just have to keep waiting because housing has skyrocketed, a studio that used to go for 500 is now charging 1500 dollars, what a joke.
I am glad the pain is going down some, sorry for the amount of drugs it is taking to accomplish that however.
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hello, today is not a good day. I had open bone biopsy today and unfortunately initial diagnosis is cancer involving 20 cm long of fibula. Ortho said it's very bad and he's recommending radiation. I was told that radiation is done on the aggressiven one. Any thoughts?
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mara, how is that even legal??? Is there a local news station you can call? Housing authorities who handle code violations? Humane Society??? (Just kidding about the last one, but sheesh!!!)
anx789 I'm sorry about your bone mets. Radiation really helped with my pain.
mel, GRRRR is right! I hate losing posts, especially when they were brilliant! I will sometimes, if I'm not too lazy, write a post in Word and then copy and paste it into here.
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sunshine, what is targeted therapy for
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Booboo- I'm sorry for the amount of pain you are enduring. Is morphine more effective.
Anx789- so sorry for the bone biopsy results. Radiation therapy should help with any pain.
Found out my blood counts are up again so I'm able to start the Ibrance on Friday. Had special son out for the day. Went grocery shopping after lunch where everyone was picking up their storm chips. I'm afraid we are going to need more than chips because Hurricane Fiona is heading right into us. High high winds and up to 140mm of rain 🌧 😌. We have moved everything into the garage. Loss of power is imminent. I know our sub pump can't handle this crap.!
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Oh Living, take care as best as you can. I will be in your pocket for sure.
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Laurie(Booboo1) - I'm sorry you are in so much pain. I was in hopes that palliative could come up with some concoction for you that would be better. I do still have a lot of pain in my leg also. Good days and bad. I ambulate pretty well most days but I don't think it ever doesn't hurt. Keeping you in prayer for better pain control.
I'll try to be brief. My MRI and CT were both good. No new findings. I saw a PA instead of my oncologist today and when I asked if I am NED she said they consider me in "stable remission". I don't know what the difference is or why the verbal gymnastics but that was good news either way. I will take it and be grateful! I am still having a hard time with dizziness, forgetfulness, word finding and bouts of weakness. I seem to get a full body tremor when I get really exhausted. I expressed that I was really hoping for a dose reduction of the Verzenio and inquired about stopping the Faslodex or switching to something else due to side effects and cognitive problems. It has gotten bad enough to effect my work and quality of life. I have never met this PA before and she seemed unprepared for an involved discussion of my symptoms. I wasn't brushed off but still didn't really feel like my concerns were addressed. I have a referral to be evaluated by endocrinology and so everything was pushed off until I see them. She said she feels this may be symptoms from an extreme hormone imbalance and felt endocrinology would be best to evaluate these symptoms and then consult with my oncologist. It felt a little bit like a punt of the issue and I am not going to let that ride but I was having trouble with the conversation and couldn't process and respond in the moment which was frustrating. I got very tearful getting my injections and am now feeling the effects, laying down again. It's a weird place to be mentally. I am thrilled to be considered in "stable remission" but I'm not functioning and feel terrible so in some ways it feels like a joke. It doesn't feel stable if I end up losing my job because I can't keep track of my mind and am so fatigued I can't function for more than an hour or two. I made it through work yesterday but just barely and the nurse today thought I should see if I can extend my medical leave a little longer. I just feel stuck. There has to be a way to find a balance between quality of life and stability. I just need more help finding it.
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living, stay safe.
Emac, Thank you very much for being helpful to me. Praying you get more rest and sleep to make you feel better. Sending you virtual <<HUGS>>
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Oh Emac, that is the real struggle isn't it, finding the balance between QOL and stability so many of us struggle with. I hope it gets figured out soon, sounds like endocrinology will be a long wait. Next time you see your oncologist, do not allow them to just put your issues aside, make them give you options on how to treat the effects of the drugs they inject you with. In the meantime, I am in your pocket always lending support.
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Can someone help me explain “targeted therapy “ to anx? My brain isn't clear tonight.
Csro (edited to say Carol - sheesh) That's what I get for trying to respond in bed while trying to go to sleep!
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