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

1…12611262126412661267…1303

Comments

  • threetree
    threetree Posts: 2,408

    Candy - Congrats on the new glasses! It must be such a relief and joy. Happy reading!

  • threetree
    threetree Posts: 2,408

    Have any of you tried D-Mannose for a possible uti, and if so how did it go for you? I have been feeling low for the last couple of weeks (haven't been able to respond to many of the posts here as I would like to, due to just being bleh and tired), and sometimes get that burning with urination, etc. I've also had some digestive upset and fatigue. With the burning, I thought it could be uti, but could be the other digestive problems too I suppose. I'm not crazy about getting antibiotics so I thought I'd try D-mannose. I took some yesterday, and I think some of the burning, urgency, etc. is gone, but I am even more tired and now very bloated, so much that my lower ribs hurt and I'm even more tired. I don't have any sort of fever and my vitals just taken here at home are all fine. I tried d-mannose a couple of times before and it seems to make me depressed, and anxious. This time I can add "really tired too" to the list. I've looked up side effects and bloat and GI symptoms are noted, along with the other things like anxiety. Reviews I've read show others noting extreme tiredness also. I'm seeing the oncologist on Thursday for a routine visit, but really don't want to get into the possible uti/antibiotics/urine test business. I've never had one of those tests show anything positive no matter what my symptoms. The anit-biotics make me sick, and it seems the d-mannose does too. I'm debating whether to continue taking the d-mannose today. I've also had a lot of pollen related tiredness, watery eyes, scratchy throat, etc. I've even wondered if I might have picked up Covid or something else going around, like a virus (norovirus?). I had to get my driver's license renewed last week and wound up in a very crowded room with tons of other people in close quarters; no masks at all, including myself, as so many were there to get a "REAL ID". I think my digestive problems were starting before that though, so I just don't know. All sorts of vague symptoms over the last two weeks, but nothing super solid. Could be treatment side effects and allergies? I was really hoping whatever all this is, it would clear up before I see the oncologist on Thursday. I just hate having to get into more than just the routine check-in. Anyone have any ideas or suggestions? Thanks for reading all this on and on.

  • chicagoan
    chicagoan Posts: 1,383

    threetree-I am sorry you are feeling so lousy. I would certainly bring this up with your MO or go to some kind of urgent/emergency care today or tomorrow. Something doesn't sound right. Think I'd stop the D-Mannose until I had a clear diagnosis. Hope you are better soon.

  • mara51506
    mara51506 Posts: 7,161

    Lost a post so catching up. There may be some repeat conLost a post so catching up.

    Irish, hoping your pain is better managed and hoping for better sleep for you as well. In your pocket sending support.

    Candy, enjoy your books now that you have your glasses.

    I am still somewhat following my list too. Laundry is almost done, there was not much there anyway. I have found that the act of just spinning the cloths negate the need for the dryer. I do not dry my pants either since they are elastic. If softening is needed can just put in the dryer on no heat. I do dry towels, both dish and larger towels.

    Working for now on putting away garbage and will be getting together recycle, I would like most done today vs post Herceptin.

    I did two eggs in a sprayed bowl, whisked them up and added the last mini quiche I have to it, put in my microwave for 5 mins. Used a fork and knife to break up, added copious sour cream and onion seasoning. Decided to take the package of cheese powder for the KD and put a dash in as well, too a spoonful of sour cream and a bit of ranch and combined all. Got to say it was pretty good. Unsure about later.

    I also found a recipe that uses 3 parts all purpose flour to one part water, work them into a smooth texture. These are apparently a flat bread since there is no rising. No rolling needed either. I am planning to pick up flour and will try these. If they work, you could use them for anything and it would be cheaper than english muffins or bread. Keep the flour in an airtight container and use at will.tent on my part.

  • threetree
    threetree Posts: 2,408

    Chicagoan - Thanks so much for sharing your take. It's very helpful. I think I will ask the oncologist about all of this on Thursday. It's not the first time I've had these "off" feelings with numerous vague, but not "nothing" symptoms. I didn't do any d-mannose this morning and I think I'm already feeling a little better; less bloated and a little less tired. Re the urgent care/er possibility, I've had some similar "vague" but chronic and concerning kind of symptoms before and have gone to urgent care and/or ER with them. What usually happens is they tell me I'm dehydrated, have an electrolyte imbalance, am experiencing drug side effects, or picked up a mild virus (pretty much all the things I consider too). Usually if I present this way, they tell me to push fluids and just keep watching and waiting and get back to them if anything gets worse. That's one reason I haven't gone up to my urgent care (that I really like).

    Intolight - I so appreciate your comments here, as always! One thing I think you might understand a bit more is that Faslodex/Zometa thing on the same day. It's been almost a month now since my last shots and infusion (at the same appointment) and I just still haven't seemed to fully recover. I think that might be a big part of my problem. I always feel lousy for a couple of weeks after the Zometa, but it seems worse now that I've had the last two times at the same time with the fulvestestrant. I can see the benefit of getting those both at the same time, as it's much more efficient and saves a trip to the clinic (yes!), but after two of these, I'm getting pretty convinced that the side effects are worse when I get the two together. I know it works for you, and I'm glad for that. I just can't seem to have a Zometa infusion without a lot of after effects. Wow, still a little snow for you, even in May. I remember once when I was a kid, here in Seattle, a few flakes came down in something like June, and I've never forgotten it. A little different high up in Colorado for sure, but still a bit of a surprise, I would imagine. Hope you are warm again soon and can enjoy the spring.

    Cookie - Your words are much appreciated, and I know what you mean about trying to not let something get worse. I think I will bring it up with the onc on Thursday. I am feeling somewhat better this morning after being up and around for awhile though. Thanks so much for the hug. I'm sending one back. So very glad to hear that your port issue was fairly easily taken care of with "just" a flush. Getting up to that hospital by 6:30 am would have been difficult for sure. I commend you for being able to do it. I probably would have just told them to schedule me later or forget it (probably not really).

    Thanks again to all three of you for your helpful thoughts and suggestions. It helps so much to just be able to bat some of these issues around with other people and get some new insight and perspective. Thinking about the things you all had to say has allowed me to mull things over more closely and walk myself through the situation more thoroughly; a big help for sure.

    I'm finishing up my morning green and ginger tea here and then I think I will try a walk. It's lovely outside; full sun and blue sky, plus we are supposed to get up into the mid and upper 70's today, as kind of an "off thing". That's warmer than we usually are this time of year, but I'll take it. I find that walking is a really good gauge of how I'm doing/feeling. Oftentimes it's a walk that alerts me to things like being more tired, out of breath, more dejected/despondent (or happier and more energetic), and any new aches and pains. I have been surprised at how that walk every few days can provide the best feedback about how I'm doing. I tune in to whether I just want a simple basic walk on the flat part of town, or if I want to go longer and climb a hill or two, etc. Just hanging around home doesn't give me that kind of info. I think I'll try the walk and then make a more definitive decision about whether to wait until Thursday to bring all this up with the onc, or message them sooner.

    Have a great day everyone!

  • mara51506
    mara51506 Posts: 7,161
    edited May 7

    Mkestral and Chicagoan, I am sorry that you both had beast colds, they are the worst and sap the little energy some of us have left. The garden is beautiful.

    I have Herceptin and Paratransit for the ride there and back. Little tired but OK otherwise. Last bit of laundry

    Yesterday, did the weirdest thing ever, downloaded an app that let me make AI songs in any genre I wished, did a few versions of my cat is the cutest in the world, my cat pooped on the floor and my cat pooped on a political leader. I must say, even with the stupid subject lines, the wee songs were fun. Not so much fun that I will keep it, just some amusement yesterday.

    Just having part of a box of KD, 2/3 cup. Will use sour cream and the KD sauce together, just not hungry this morning due to not used to eating this soon after getting up. Takes me couple of hours to feel that way. Made it same way I make rice except kept on low a couple more minutes. Came out perfect, little bit of cheese and sour cream and onion with a dash of salt. Added a reasonable amount of sour cream to the bowl and it was really very good. KD really is versatile, can use those vs frozen pasta in meals and make up seasoning etc. Back in the day we had sour cream and onion KD cups so can make it for myself

    2/3 cup KD noodles, added water and heated through with a lid, turned heat off to avoid any burning. Added to a bowl, was not feeling the cheese so added some of the cheese powder, sour cream and onion seasoning and a dash of salt, used sour cream to bind all together, I actually liked it, made me slightly full. Still took one immodium to ward off anything. Tonight will include eggs with beans thrown in and all that good stuff.

    I hope everyone has a good day and in pockets for those who need me.

  • mara51506
    mara51506 Posts: 7,161

    If I figure out a way to share these, I will. Considering the stuff I put in the description and the different music styles, sounds pretty good. Trouble is the program is holding them hostage unless I pay 30.00 to get proof of creation. Not doing that. If I figure it out, will post.

  • mara51506
    mara51506 Posts: 7,161
    edited May 7

    https://www.musicdonna.com/song?id=46b25ced-72a4-4baa-95a5-9b3791b6c23d

    You have to left click the link above, it pulls up another link, left click that, takes you to the song.

    Cutest cat in the world is the name of the song.

  • cookie54
    cookie54 Posts: 1,220

    @mara51506 I copied and pasted into web browser, worked like a charm. I loved it!!! It really is cool and sounds good. So crazy what can be achieved these days with AI.

    @mkestrel What beautiful liliacs,you definitely have a green thumb. Glad your feeling better now hopefully your voice will return soon. For a couple of years I would go through the same thing in the Spring. Hope you had a fun time kayaking an soaking in some healing Vitamin D.

    @threetree I also live on loratadine and I certainly feel a difference if I skip it. In your pocket tomorrow for your appointment.

    Hope everyone is having a good day.

  • tanya_djamila
    tanya_djamila Posts: 1,612

    intolight congratulations on great scans. Way to go oserdu.

    MKestrel the lilacs are lovely. I used to have them in my yard in NY found out so many flowers that I had I. The north don’t make it innFlorida.

    My DD and GD took me for a beach day yesterday and today. Yesterday I took it easy but today I rode the waves 🌊 with a floaty. Water is warm. I’m exhausted but great fun and I didn’t have to drive.

    Tomorrow thyroid ultrasound and taking it easy just putting around the house.

    Take care all

    Tanya

  • threetree
    threetree Posts: 2,408

    Cookie - Thanks for the good and supportive thoughts about my appointment tomorrow. It's really just a routine monthly follow-up and blood draw for general monitoring, but I think I will ask about these virus type symptoms I've been having - oops forgot that I have to get those awful Faslodex shots too. Darn!

    Intolight - Delighted to hear about your good scans. That must be such a relief and so encouraging. Congratulations and keep up the good work.

    Tanya - I'm sorry you don't have any lilacs there in Florida. I'm sure you have plenty of really nice ones that give you joy every spring, though. Ahhhhh the beach! Sounds like a real nice couple of days. Our water here never gets warm like that.

  • mara51506
    mara51506 Posts: 7,161

    Intolight, great news on the scan results, that is awesome.

    Cookie, yes AI is amazing. You can change the style of music, male or female voice as well.

  • mara51506
    mara51506 Posts: 7,161

    Good morning all, just woke up, was not a long sleep but good enough. Nothing on the agenda for me so far other than washing clothes and taking a walk. Going to be sunny and want to try out some of my cooling stuff as well. The wide brim hat, think baseball cap except the brim keeps sun off my face. I have not done significant outdoor walking with a cane and feel it is time to get started with at least 30 mins a day. No fears of falling on my part either anymore.

    Had a good Herceptin session and Paratransit rides, they were able to pick me up early since I was done very quickly and had a two hour wait. I am going to get to the point where I want to walk to the hospital, bout 30 mins but first need the walk around the block thing started. Nice thing is that although I am overweight, my weight is staying steady, no gaining and that is fine with me.

    I somehow misplaced the neck fan I had so just bought a new one and bought four cans of the chipotle bean medley. I do find them enjoyable and don't honestly feel a need to chop them up, the texture is not bothersome. I chop black and green beans to hide in the food.

    With food, I want to get some flour to make some flat breads. 3 to one ratio of flour to water, add some salt, flatten by hand and you can spread whatever you want on them, put garlic on them to serve with chili and such. They look to fry up pretty quickly in the frypan. I will see, just going to keep flour in air tight container. Meals today will feature beans, not sure what format yet. I am thinking could open beans I am not in love with, open can and chop up then put in airtight container, saves chopping each time, leave other chipotle beans as is and use together in different meals. Still got an abundant amount of rice as well so may buy some seasonings to turn it into mexican rice as I am missing cumin and garlic salt. I still have chicken broth and tomato sause I can use as well as the cumin and garlic salt. I am not as worried about sodium in the dry seasonings as BP has registered on low end of normal for the last few checks both at home and at cancer clinic. Not putting stupid amounts but feel better about dry seasoning.

    DB taking me out tonight for some things, still planning a walmart delivery because DB and SIL refuse to shop there for political reasons but I appreciate the prices so I can get what I want without involving them. At Costco, take an advantage and pick up cooking spray and possibly the rotisserie chicken. I could chop it up and freeze. Pretty much giving up the frozen pasta, really is not practical when I have rice and dry pasta which overall is less expensive. I can make the different tastes myself

    I finally opened the buckets I was going to use in case the drain did not clear. Bathroom and kitchen drains are just fine so that is good. Lint filter buillt into one of the machines is trying to fail so will just keep patching up or sew another mesh bag into the clip on part overtop. Have to sew or it will not fit. The buckets can either hold more recycle type of stuff or hold water when I use the panda spinner which is only needed for the two larger blankets I do separately. Rest of the bedding is done in the newer washer. I also have newer bath towels, can replace the larger towel with holes in it or just cut up the towels to use for dusting or if floor needs a clean, seperate proper cloths for bathing and keep the old ones as rags instead of filling landfills.

    I decided on normal white rice, make that up first, add some of the chipotle beans and an egg. Rice and the egg will be premade. Chopin eggs with a bit of shredded cheese, put all in a heated pan with a butter rub, drop in eggs and cheese, rice and some chipotle beans. Will probably season with some caesar dressing, sour cream and onion and bit of salt. The amount of the dressing will really depend on how much I need to bind the ingredients to make them creamy. Probably will will make this toward when I am going out as well. For now cleaning up boxes to open up doorway area. Before buying flour, going to grind up rice to make rice flour and use same ratio with butter as the oil, fry up and see how it would turn out. Might be good, will not know until I try and inform me of whether or not the regular flour could work. Will post with results.

    I hope all have a good day, in pockets for all who need me including myself to get everything done I want to do.

  • mara51506
    mara51506 Posts: 7,161
    edited May 8

    Edited from above post, the rice flour thing did not work, might skip flour altogether and get small tortillas instead and fry. Since no flatbread, decided to take the rice, and fry in cooking spray and garlic spread, added some heaping amount of cheese as well for the protein. Not nutritious but what I want now, will remember to chop up rice, add water and just insert into pan without a separate boiling. Chicken broth rounded out the list and it is just sitting on the burner with a lid, burner turned off at this point. Will likely season with sour cream seasoning, dash of salt, possible cheese from a container and bind with sour cream.

    In future would just, do the rice that way, add eggs peppers and beans or meat if having cooked up a burger.

    Edited, it filled me up quite a bit so putting leftovers in airtight container in the fridge, will add that to another dinner of the chipotle beans and just add the leftover rice and some riced veggies. As said above, not interested in the flour at this point, will pick up small taco shells and toast them up if I want to. The rice was quite fluffy with the cheese, used the sour cream seasoning, ranch dressing and bit of salt. Also did use chicken brother when the initial garlic spread and spray were absorbed. It was really fluffy though.

  • shanagirl
    shanagirl Posts: 560

    @mkestrel I’m sorry you are dealing with with that horrendous cold. I was on Loratadine for quite awhile. I read it’s supposed to also help with bone pain from bone mets. But my allergies and asthma were really getting bad,and showing up on my scans in my lungs.So my Oncologist sent me to his pulmonologist and he changed two. Of he meds my GP had me on. Loratadine and Fliticasone Propianate Nasal spray once a day. The Pulmonologist changed the Loratadine to Montelukast SOD (generic Singulair) t tablet nightly, the nasal spray Azelastine HCL.your Lilacs are beautiful.🥰

  • mara51506
    mara51506 Posts: 7,161

    Shana, really hoping for non invasive for you as well to relieve your pain too.. In your pocket. I don't make a detailed list of stuff to do. Main goals are a clean sink at the end of the day, no dishes left over, pour the hot water down the drain in bathroom and kitchen drains on the regular etc.

    I did get the cumin and garlic salt to use for mexican rice, I already have tomato sauce. Also got a rotisserie chicken at Costco, planning to do all the splitting up of stuff tomorrow morning. Split up, figure out uses, freeze unneeded stuff, I actually have managed to stop overstuffing the freezer. Meatpies, no frozen pasta, even though it is cheap, more processed than I like. Better to boil up some pasta. I bought a copious amount of finely chopped kale, I really do not mind the taste. I am looking forward to cutting up the chicken and figuring out how to use. I know I can freeze some, eat some and refrigerate what I wish to use up. Could not find chipotle mayo, darn it but have a way I think, just take a can of the mild chipotle chili and drain it into a container, put some mayo in there as well. I will see what I want to do. Looking forward to meals this week.

  • mara51506
    mara51506 Posts: 7,161

    sfcakes, no problem, even if there are no replies when people are busy, I know they are reading. This site allows me to talk using a keyboard instead and can cover facts I would normally not be able to in real life.

    I went to bed late but that is not at all unusual after a good walk late in the evening, still slept pretty well. It is nice and sunny here, will take my cooling stuff out for a test once it gets warmer. Going for half an hour if possible, I did that amount of walking last night so should be good.

    Laundry and chicken are the first tasks on my mind. Never cut up a chicken, at least was cooked already but I will do my best with it, I would like to make several meals with it.

    Edited, I am finding the chicken a little difficult to get apart, taken a couple small breaks, am eating as it goes along, tastes good. Should have chosen a bigger cutting board but that is OK. Breaks can be taken as long as they are needed, no real plan , any chopping will be done when getting ready for meals. I have no knife skills so pulling meat off the bone and munching as I go. Even without seasoning, I find the chicken enjoyable, will be giving some to the cats here and there as Tigger devoured it. Most of the chicken is off the bone, with the munching on the chicken, I can take the time to grab handfuls and put in containers for fridge and the freezer. Need to handwash the bag out as it will get very stinky, may even put the bones in the cleaned bags, cover in baking soda and taping up the bag the chicken came in, possibly another bag as a double bag for it. I will see what works best for me. Almost done the meat, lot more work than I am used to. Getting to the putting away in air tight containers, A lot going in the freezer and a lot going to the fridge as well. I ate quite a bit as well while taking meat off the bones. Boiling the bones and figuring out how much to keep of the broth other than using it when making rice or veggies, letting it boil away. At least the chicken is done, again, ate quite a bit while taking the meat off the bones.

    Next meal will be kale and of course a good amount of chicken soon. Have to soak the pot, I did not put enough water in and there is a terrible scorchy mess so soaking it right now, not a big deal. Got most of the bones put away, still need to clean the bag out that it came in. Added baking soda to the bones as well so they do not smell. Think in future, just dispose of bones and leave out the broth idea. Could probably do better heating up my own chicken broth with other stuff. It is a lot of work taking apart a chicken but will appreciate the meat in future meals.

    I am late posting so hope today went well for everyone and I was in pockets all day for anyone who needed me.

  • cookie54
    cookie54 Posts: 1,220

    @mara51506 Glad to hear you got out to Costco last night. Love buying those chickens for a quick meal the possibilities are endless.

    @sf-cakes It's good to see ya! Ugh sometimes technology can be super annoying for sure. My phone never gets my talk text correct, what's the point if I have to retype anyway. Hope you have been feeling well.

    Dreary day here so just stayed in and cleaned and also got some wash done. Having my mil and a couple family members over for lunch tomorrow . We plan to order out from our local pizza place and enjoy the nice weather. My mil is soon to be 87 and riddled with arthritis so everything is an effort for her. We'll sit her out on the screened in porch for lunch and she will get to enjoy the fresh air. I made chocolate chip cookies, grabbed a watermelon and some ice cream., done! Easy peasy for me tomorrow.

    Thinking of all here , hi to everyone following along💕

  • mara51506
    mara51506 Posts: 7,161

    Thank you for the invite, I will be right there.

Categories

Join Us on Zoom: Upcoming virtual support groups. Read more...
Share more about you! Fill out your NEW profile.