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My Husband, My Life, My Love, My Family, My Cancer

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  • mara51506
    mara51506 Member Posts: 6,563
    edited August 25

    Just want to say, pizza was very good. I did chop up precooked egg, added handful of beans, no measuring and added the croutons and fiber cereal, boosted up the fiber content. I put pizza and cheese sauce on, spread around with spoon, added the other ingredients as well for the toppings. Put shredded cheese on top and cooked at a low temp since tortilla would burn if too high, 375 and kept checking, I was quite good. May have to order more pizza sauce. Keep forgetting my tomatoes, should be chopping those and the broccoli mixture into something as well.

    I am also thinking of the frozen pasta, could heat it up, let cool and split into couple containers, take scoop out and put on sprayed baking pan, take some shredded cheese and other stuff and make a sort of crispy topping, not sure. Sorry for the food talk, I just get enjoyment and don't want to forget ideas I have.

  • mara51506
    mara51506 Member Posts: 6,563

    Sondra, I am so sorry this has happened to you, the D is most likely the anitibiotics, checked up to see. As far as loperamide, if they are suggesting, take them with every meal to slow everything down for you. Once you get off the antibiotics, you may want to still take the loperamide, even 1 tablet before meals, low fiber for now as you probably know. Brat foods but also eggs can be helpful. Could blend them together as more of a puree texture to keep it simpler to digest. Digestive enzymes can be very helpful as well to aid in digestion. I hope the antibiotics are done soon and so sorry again that this is happening to you.

  • cookie54
    cookie54 Member Posts: 873

    @tougholdcrow Awww love how content your pooch looks. He is very handsome love his coat colors. Glad you got out and enjoyed a nice day on the water.

    Mara I love to make throw things in a tortilla. Makes a quick easy tasty meal.

    sondraf Glad your LE specialist really knew his stuff and seemed very helpful. Hope he gets it under control for you quickly.Ugh the stupid big D ! It's always something, in your pocket for better days ahead.

    Was a beautiful weather weekend here as the summer winds down. I am looking forward to Fall and I bought my first pumpkin candle of the season. As much as I hate to see the summer end I love the crisp Fall air and enjoy decorating the house.

    goldens Hope your recovery is going well.

    Wishing all here a peaceful evening.

  • goldensrbest
    goldensrbest Member Posts: 737

    Despite the crappy days we often have, I love the funnies that are shared. Mara - you are a hoot - love the upturned lip curve🤣. And always the lovely photos that are shared too.
    Starting 6 weeks of PT today. 3x a week for 3 weeks and then 2x a week for 3 weeks. This has definitely been harder than the knee replacement 2 yrs ago☹️.

    Here for pocket duty for those in need. Hope we all can find a spot in our day for comfort and peace. HUGS🤗🤗🤗

  • threetree
    threetree Member Posts: 1,833
    edited August 26

    Mel - I sure remember my mom telling me, "You're face'll freeze!" Especially when I was starting to cry and she was mad at me.

    A whine here: I've been having a really bad couple of weeks and can't tell if I'm genuinely sick with something, or if it's been drug side effects, exceptionally rainy and cold weather for this time of year, or migraine/cybersickness sort of stuff from a new computer monitor, along with starting a new PT program. Maybe a combo of all of the above? Way too many factors. It's one of the things I hate the most about this disease!

    My little laptop that I'd used for years gave out about 3 weeks ago, so a friend took me to Best Buy to get a new "all in one". Various doctors and PT's had been telling me for the last couple of years or so, that my posture was causing a lot of my aches and pains, due to hunching over the laptop. (I've also had a couple of spinal fractures and developed a hunchback/kyphosis from them.) I decided to get the "all in one" set up so I wouldn't be hunching so much. Well the monitor is so big (27") that it seems to have thrown my vision off and I keep getting headaches and new aches and pains in my upper body when I use it. Just can't seem to adjust to it. I then also ordered an actual office chair so I wouldn't be using a dining room chair, again on the recommendation of doctors and PT's. Like the monitor, the chair too is causing just as many new problems as the old set up was. New aches and pains, lumbar support in wrong place and not adjustable, etc. My friend's brother-in-law kindly assembled it for me, and his wife (my friend's sister and another old friend of mine) drove it over to me the week-end before last, from their house where it was assembled. To thank my friend and her sister for all of their help, I took them out to lunch at a favorite Mexican place. Next morning (last Monday) I felt absolutely horrible when I got up, and figured it must have been the once in 6 mos beer that I had with our lunch (dark Negra Modelo), and figured I shouldn't have done it with the Verzenio and Faslodex, etc. Well, it all just continued all week long - the body aches, headaches, lethargy, nausea, and depression. To top it off our whole last week or two has been unseasonably rainy and cold. Just yesterday afternoon, I started to feel slightly better and it continued to improve into the evening. Interestingly, our weather is clearing up a bit and the sun is back out. I've also managed to make a few seemingly helpful adjustments re the new computer and desk chair. I'm still "half sick" if you will, but noticeably better, but I still can't tell just what has been causing all my problems.

    I've been following along with posts, but have been so lethargic, brain foggy, and bummed (along with headaches, etc.) that I haven't been able to post to people when I've wanted to. All I've been doing is "liking", etc. when I want to actually write a response. This is the first post I've been able to write at any length in over 2 weeks! I can already tell my vision is starting to get a bit "off" with this monitor and that a headache will probably ensue. Just hoping my general improvement continues and that it is at least an improvement over what I've had over the last couple of weeks.

    Has anybody else had any of these problems with new computer systems, the weather, or whatever? I know this is a long rambling rant, but I would appreciate any input or comments that anyone might have about this. It has been very strange and overwhelming for sure!

  • chicagoan
    chicagoan Member Posts: 1,085

    Threetree-I had to buy a new monitor for my desktop about 10 days ago. It's 24"-my old one was much smaller. It has been somewhat of a shock to my vision b/c this one is so large and bright. I thought I would like it but it is taking some getting used to. Hopefully we'll both adjust.

    I wonder if you could have had a mini bout of Covid with your other symptoms? That's how I felt when I had Covid a few years ago and it's certainly around this summer. Hope you feel better soon.

  • intolight
    intolight Member Posts: 2,426

    @threetree Thanks for sharing your post. I know my posture is lousy because I sit in my recliner when using my laptop. I probably should get to a table but I am too lazy… Just last week I got new glasses and they have helped some already. I seem to have weeks when I feel lousy for a few days but then recover. I have absolutely no idea why but it comes and goes. I have tracked my food but found no pattern. I feel like you said with body aches, headaches, lethargy, depression, but then it passes. I can expect it after my Faslodex shot, but it sometimes happens weeks after. I am on Verzenio and Faslodex too so perhaps it is connected? Hmmm…

  • mara51506
    mara51506 Member Posts: 6,563

    Threetree, I have to use laptop on my lap, no room for a desk set up. I have bad posture, stretch out neck and arms to help. Get trigger finger if I forget to do up my hand for game, just take wrist brace but wrap around the hand. Both of these earn money for watching ads.

    Chicagoan, I found I got headaches from my laptop or other device too because I use them all the time for all budget boosting activity. I picked up computer glasses that take care of eyestrain and magnify 1.25 x which help a lot to avoid the eyestrain headache, wish I thought of them when working at the call center. Hoping you get adjusted soon.

    I woke up later today after a long sleep, recurring dreams of being stabbed through my head, I always find out who did it and get them arrested. Wondering if it is my subconscious dealing with the pool of blood in my head, it has not changed and get MRI every 3 months. Just weird.

    Just going to have a couple of pot pies with lentils, heat in microwave for 3 mins and add salt, may and ketchup, will be good. Supper can be a tortilla sort of pizza or an egg sandwich on tortilla with chopped veggies. I have not yet decided what I want. Also having my usual boost with milk, delicious and filling.

    In everybody's pockets who need me, hoping all have a good day.

  • seeq
    seeq Member Posts: 1,184

    Threetree - I hate that it could be any or all of those things. That being said, your description sounds very much like how a friend described her recent case of COVID. I've heard others talk about the depressive feelings when they had COVID, too.

  • gailmary
    gailmary Member Posts: 543
    edited August 27

    Threetree, I wouldn't be blaming side effects unless you just started something new. Isn't it kinda rare for a bunch of new SE on something you've been taking a while.

    Posture and overuse of computer has gotten me in the past. Stretch and stretch so more. Check your posture.

    What ever, I hope it's better now.

    My Biopsy was positive for grade 2 idc with micropappilary features. Did they check for that in 2008?

  • threetree
    threetree Member Posts: 1,833

    Chicagoan - I really appreciate your story about your own new 24 inch monitor. Like you, it's been the brightness and large size of everything that has been throwing my brain and eyes off. Interesting I initially told them I wanted a 24 inch screen, but I also wanted an adjustable screen, and the only adjustable ones they had were 27 inches, so I just said, OK, let's go with that. When I got this home, I really thought I should have stuck with the 24 inch idea. To hear that even the 24 inch is doing something like this to you, tells me a lot! Yes, like you I am hoping that over time, I will adjust and things won't be so bad. I googled a little and read about some other people who've had problems with new monitors. Some took them back (too much of a hassle for me), and others said it did get better but that it took as much as 3-5 weeks; not 3-5 days, as I was hoping.

    Interesting about the Covid possibility too. I had actually wondered, but didn't do any testing, because the last few times I've tested myself, when things like this happen, the tests wind up negative. I know that's not a sure bet when a home test shows negative, but I just figured I'd probably wind up again with another negative test. Also, I haven't had any upper respiratory problems or fever. I did get some chills about 3 nights ago, but it has been colder here. On the other hand, that night was no colder than the others and I didn't get chills on those nights. I've also had a flushed and warm feeling face, but no fever whatsoever, and I checked regularly. Other than that, I think it could have been Covid.

    Intolight - Thank you for your response. Yes, I think posture and drug side effects are playing into this in some way. I do have computer glasses and I tried switching to those, but then it seemed like switching my glasses back and forth just added to the headache and vision problems, so I'm just using my regular graduated lenses. I've also noticed as I've followed your posts, that you get similar side effects to mine with the Verzenio and Faslodex. I have also noticed where just seemingly out of nowhere, I have days in a row of "enhanced" negative side effects, and I also can't track them to food or anything else. Like you, sometimes it's after the Faslodex shots, but sometimes later too. It all just continues to make things so difficult to sort out!

    Mara - I am absolutely amazed that you have been doing your "budget boosting" computer work on your lap! I had always assumed you had some sort of desk set-up, since you do that. That would cause me so many aches and pains, I got it hand it to you for doing it the way you do. I understand about using a laptop when there is little to no space for any other set up. I live in a small apartment and have been using just a laptop for years now. I got the idea from another woman who lived in a small apartment and told me she used just a laptop as a space saver, but she did have hers on a table. I had a desk set up at the time, but decided after seeing her situation, that I would get laptops in the future, and always did. With the spine mets, osteoporosis, and fractures, though, it's just proven too much for me now, so I have to have a full set up of some kind. So glad to know that you at least get paid for your aches and pains! Also, I saw a PT today who introduced me to a "bridge" exercise, and when he mentioned it, I immediately thought of you and what you call your "bridge pose" that you do on the bed. I had always thought you were doing something like that old fashioned "up on all fours" sort of thing, that my friends and I used to do when we were kids, but what this PT showed me as a "bridge" was actually mostly lying on the bed with one leg straight, one bent, and then gently lifting myself up ever so slightly. Is that your "bridge pose"?

    Seeq - Interesting that you too, thought of Covid. Your friend's experience sounds different, and maybe that's a thing about the current strains going around. Yes, whatever this has been, it has had a very peculiar form of " really bummed" that goes with it. That seems to be improving, along with some of the other symptoms today, thank goodness. Just no fever or upper respiratory symptoms at all, so hadn't made a Covid connection. After what Chicagoan and you have noted though, I'm re-thinking some of this now.

    Gailmary - Thank you very much for your thoughts. I agree that it is odd to get a whole bunch of new side effects without wondering if it isn't something other than the drugs. You mentioned stretching. Well, I went to see my new PT person this afternoon and he and I talked a lot about the computer posture, and he's given me some exercises to do. Hopefully in time, I will see improvement from that - then maybe I can get a better handle on what's causing what. Also, I have been following your posts about your Faslodex alone not seeming to be working anymore, and I want to tell you how very sorry I am. I truly hope they have a good new plan for you. Since you've done so well for so long with just the one drug, I think there's still a whole arsenal out there that will benefit you yet for a long time to come!🤞

  • irishlove
    irishlove Member Posts: 598

    Hi all. Hope everyone is doing as well as possible. Shrugs to the shoulders helps with pain in the neck area from computer usage. A PT taught me that years ago. Or was that a housewife that didn't listen to her spouse or kids complaining. LOL

    As for computers, I hate any kind of change! We were buying a Subaru and I pulled the plug because of the angle of the windshield. Sounds crazy, but the angle of the sunlight coming thru the windshield was so severe that it distorted my vision. I tried a pillow but then I couldn't reach the gas and brake pedals. Sorry, but not sale that day.

    Larger screens yield more distortion. Angle of screens yield more distortion. If you pin hole your vision, you will notice how clear it is. Well, same goes for TV and computer screens. Due to bending of light rays and the peripheral vision area is larger, you will find more distortion. We (opticians) call it light distortion. Make sure to use anti-reflective coated lenses even if your screen has the AR coating. It's an extra layer of help against strain of your eyes. Sometimes it's better to get the optician or optometrist to calculate an RX strictly for computer viewing. It is not the same as a distance or reading RX.

    I rec'd a Pfizer Patient Assistance letter today telling me my income is too much and Dec. will be my last covered financially RX. I pulled out my income tax return and calculated the Federal Poverty Level for a household of two in FLA. We certainly qualify as we are under 300% (the cut off for 2025). So I called them and asked them to correct my records after she viewed the income tax statement. She said the new forms are sent in Oct., and I can take care of it then. They also require something to do with enrolling in Medicare Drug something or another. The rep said there will be more literature on that coming soon. So check your mail, check your numbers and hang on to your coverage if you are qualified and they made a huge error.

    In pockets for my sweet friends.

    Laurel

  • micmel
    micmel Member Posts: 10,060

    there is always something with insurance or disability. Medication, MO’s scans etc. I hope you get that web figured out. What a pain. Once a year I have to be re approved for my disability and I hate it. It’s like proving I eat. I’m not going to instantly not have MBC! Ugh ! It came out good but all that paperwork and doctors visits!
    gailmary. Thinking of you! I hate biopsies! I hate cancer. Truly hate everything about it , except you ladies. Love the doggie!

  • cookie54
    cookie54 Member Posts: 873

    threetree I don’t have much to add to what everyone else has said. They are all very valid points, and I hope you have better days ahead and start to feel more like yourself❤️

    Irish i’m sorry that you have to deal with all the red tape BS! It’s all super annoying and mentally tiring and we should not have to deal with it. Agree with Mel it’s like we have to keep convincing everyone that we are no longer curable. I just don’t get it!

    In everyone’s pockets for a good appointments and treatment week.💕

  • wren44
    wren44 Member Posts: 7,947

    my computer has a brightness control under display. Might help with eye strain.

  • threetree
    threetree Member Posts: 1,833

    Irish - Interesting about the windshield on the car and the angle! I would have never thought about it - good for you for being so astute! I do have some prescription computer glasses, but I'm not sure they are the answer here. They are better with a narrow area of the monitor, but not when I have to look at the whole screen or look away. I'm going to keep trying all sorts of things. I really appreciate the tips from others.

    Also, so sorry about your disability/insurance problems. I agree with you and Mel, it just seems ridiculous to have keep jumping through all the hoops when you have MBC; it's pretty "self-explanatory". I wonder if the Medicare program they want you to qualify for is what they call "Medicare Extra-Help". Some of the clients I worked with in guardianship over the years were getting help via that program, but I don't know the particulars other than that it seems to be income and possibly "medical condition based". Fingers crossed that you can stay on the assistance program. Some of these drugs come with unconscionable costs.

    Cookie - Thanks, I think I am getting a better handle on things gradually. As you noted, everyone made some really good points. Interesting that the weather had cleared up here yesterday morning and I was much less achy. After leaving my PT appointment yesterday afternoon however, the clouds and rain had returned, and I immediately felt the aches and blahs returning as I walked to the store and then home. It rained steadily over night and I woke up again with a lot of body aches. I've never been all that certain that the weather could do so much, but I am re-thinking that one too. I think the low estrogen causes all the joint, muscled, tendon, and ligament damage; brings on the osteoarthritis, and then the weather just tops it all off with more aches and pains. I'm just not used to this stuff! Never had these problems until cancer drugs. I now feel like a big whiner and hypochondriac, but I think this stuff is REAL!

    Wren44 - Thanks so much for mentioning the brightness button. I've read about this issue and I have turned the brightness down, and I think it is helping. Also, this new monitor seems to have an easier way to manage the brightness, so I don't have to go into the "settings" section. It's next to the speaker volume now, in addition to being in "settings". It might be the Windows 11 that I am just starting to get used to. It does seem to have some handier things than Windows 10. From what I've read it looks like you could wind up changing the brightness throughout the day, depending on both indoor and outdoor light. I'll have to keep studying up.

  • mara51506
    mara51506 Member Posts: 6,563
    edited August 27

    threetree, I avoid problem with regular arm and neck stretches, back can ben stretched leaning forward a bit, I do that regularly. I try to be up every 20 mins or so, even if for a five minute break. Today, am starting a system of walking in place to a couple of songs and getting up to 5000 steps. Starting there as a goal. Found these exercises when I did work at home at a desk with a good chair. Stretching is key. can stretch legs and exercise ankles by setting aside laptop. Some budget boosting are on other smart phones also. I don't throw technology out usually so I have several phones that allow me to play different games for money, never any game that requires money like slots,, just easy games like solitaire etc. My tv plays on mute some videos that earn other money as well. I get paid for the ads, not that much, I usually aim for enough to get free cat food from Amazon.

    It is supposed to be quite humid and hot, 100 F. Will stay in for the moment all chores exercises. Still looking for the 5000 steps throughout the day, bits at a time as well. Got plenty of laundry, was trying to decide how to do all blankets, answer is empty bathtub, wand wash it in the tub, prices at the laundry are too high even if I cart it over, brother's place would require stairs without a railing, not asking them to launder. Bathtub, take turns with spinning and drying, fleece does not take long to spin. Regular cloths, clothes and towels go through wee little washer and the portable washer with the dryer.

    Edited, I am making the mexican rice currently, I believe I will skip the egg and beans and heat some lentils and beefless ground with some of the mexican rice in the microwave. If I believe it is needed can still add the cheese sauce and pizza sauce or take one of the cheese sauce packets from a KD box, save those noodles for another meal. Heat it with the pizza sauce get a nice cheesy taste. Still going to try the peanut butter, lentil and cheesy melt on a tortilla later on. We will see. Boost and milk of course midday. The mexican rice stuck to the bottom of the pan but when taken off the stove, used a knife and a metal flipper and just scraped it off, should be fine I think. Will heat up the rice, cheese sauce and lentils separately and wrap up the bowl to put in the fridge and have leftovers. Probably could get 2 to 3 meals out of it and can add other ingredients later. Still have the broccoli and coleslaw mix, will see if it is still good and chop those into whatever I am having as well.

    In everybody's pocket who needs me and also hoping we all have a good day as well.

  • mara51506
    mara51506 Member Posts: 6,563

    Threetree, I highly recommend computer glasses and if reading the screen is a problem, can get them with magnification. I got mine off Amazon, 5 pair in a box and the magnification is 1.25 percent which helps a lot, no more eye strain from the computer, easy solution. If you wear regular glasses, they can be put on after regular lenses, just need to be careful the lenses are not touching is all. If contacts, no problem. I have glasses though I do not wear them all the time, works for me no scratches.

  • chicagoan
    chicagoan Member Posts: 1,085

    wrenn-I think I adjusted the brightness down to 50%. I don't have a button for that but tried it in the settings. Much better. Thanks for the tip!

  • mara51506
    mara51506 Member Posts: 6,563
    edited August 28

    Chicagoan, glad the brightness helped you and it is easier to put up with for you.

    I must say, the spanish rice, lentils, cheese sauce and wheat bran was really good, still have quite a bit left so will add to upcoming meals. Tonight am trying out a peanut butter tortilla with lentils and cheese. I added the peanut butter first, then lentils and shredded cheese on top. Started to heat at 375 then bumped up to 425 to finish quicker, no folding, this was like a firm pizza and surprising, all flavours complemented each other.

    Added some peanut butter powder to the chocolate Boost and white milk, let me say, it was like drinking the reese peanut butter cup, will continue to do this.

  • threetree
    threetree Member Posts: 1,833

    Chicagoan - I put my brightness at 50% too, after reading online a bit about how brightness effects our eyes, etc., and I do think it is better.

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