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

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  • mara51506
    mara51506 Posts: 7,161
    edited March 4

    Mel, donated to the go fund me. In pockets for you and who you are supporting.

    Slept well enough but just got up now which is fine. Last night while heading off to sleep I dreamed of putting a shield around Ukraine that nothing could penetrate. Was very weird but goes along the theme of saving people in real life, movies or characters in video games.

    I did a laptop dust on lowest power and all of a sudden it has a bit of whistle, like I blew a fan out of place but it is working so no taking apart, if it bothers me, I will listen to music as a distraction. Lesson learned.

    I have laundry to do, yay, an insane amount of recycle to go out and need to get the cat litter into the larger steel box, got an extra large for them. I am liking the litter genie also. Once it is switched over, just clean and disinfect the smaller box and use it to store other things. I also have the food channel on the TV to get paid for ads. I am also washing the hand vacuum after emptying it, soaking in sink with dish soap and will give it a good scrub as well.

    I also had a high blood pressure yesterday, did not surprise me too much, been lazy about veggies in my food lately so more beans, lentils and spinach will follow. I would rather eat more of those than give up the food I like. Can just have them with every meal as I did before. Normally my BP is fairly low. Whatever the cause, anxiety for results or just not enough veggies, will listen to my body. Maybe get some veggies delivered as well with a grocery order, I will see about that. They also complained need more vit D. May order chocolate milk to drink a cup a day to supplement as I am not outdoorsy when I put out next grocery order. Oh well gotta stop worrying, the BP taken cou ld have been a one off but decided to also pick up some citrate and vit D to assist in the BP and vit D. I also purchased something called nusalt. Supposed to taste like salt, figure can go 50 50 with actual salt when seasoning as no sodium is not good either. It will all be interesting to watch and taste. Figure that I do not want meds to lower blood pressure but the additions should be helpful.

    Not sure what I am having today, may have a veggie filled dish and add a meat pie and add less dry seasoning and stick with lower sodium stuff. Just going to measure what I need. I will see. With all the boosting after vitamins coming tomorrow, may be able to use the seasoning but measure instead of going whole hog.

    I do hope everyone has a good day, it is rainy here but that won't stop my recycle going out. I am in pockets for all who need me.

  • threetree
    threetree Posts: 2,408

    I have a question for anyone who might have anything to contribute: Do any of you who get fulvestrant shots or are on any other anti-estrogen get migraine symptoms that you associate with the drugs? I know sometimes headaches and other symptoms like these can be called "hormone headaches" and occur with fluctuations in hormone levels. In my case the headaches themselves aren't especially bad, but I get achy, off balance, and very fatigued and brain foggy with it all too. The odd thing is that I was feeling exceptionally good about a week or so ago and actually got a lot done around my apartment; so much that it shocked me. They were having Xfinity come in here and hook all the apartments up to a new internet system (whether you want it or not), and my place looked so awful I didn't want people in here. Well somehow I got a surge of energy for a few days and tidied up quite a bit; enough that I didn't feel bad about having people come in here, and I was able to clear the area they needed to access, etc. Most of the time, I could not have done any of that, and I was floored that I had had so much energy - thought it was "spring" or something.

    Then out of nowhere we got a weather change and all sorts of tree pollen came with it. I started sneezing, got the watery itchy eyes, the cough, and the whole nine yards that come with hay fever. At that same time, my mood dropped, my energy left, and I started getting some of these migraine type symptoms again; headache, lightheaded, a bit off balance, etc. I had trouble concentrating, coudn't focus, and could only read here and not really post anything. I read that allergies themselves can cause these symptoms, and they can apparently trigger migraines too, that then produce the same sort of symptoms. Have any of you ever had symptoms like this with allergies or connected hay fever to anything like migraines before? This all seems to be interrelated, but I don't know if it's unique to me or a "syndrome" of some kind. I never used to get anything like migraines until I started with the anti-estrogens - especially the Faslodex. Claritin used to take care of my spring tree pollen problem, but now it just dries me up in seemingly an instant, and every time I've taken it over the last couple of years, I've regretted it, so again, I think this is all related somehow. Any others with any similar experiences as this?

    Thanks for reading, and sorry for the long post.

  • cookie54
    cookie54 Posts: 1,220

    @micmel I'm sorry for all this stress, continued prayers. May all your family , friends and community rally around to pull you through this. Donation sent❤️

  • goldensrbest
    goldensrbest Posts: 824

    Mara - so glad to hear your scan results were good🎉🎉.

    Irish - safe travels! Enjoy time with family and praying your health cooperates🙏🏻🙏🏻.

    Mekestrel - that bread looks scrumptious.

    Mel - Again I’m heartbroken for you and your dear Gabbie. I hope you will find the necessary resources to help her. It is an honor to donate to her go fund me account, which I will do today. Prayers for both of you🙏🏻🙏🏻

    Pocket duty for all in need. HUGS to all.

  • cookie54
    cookie54 Posts: 1,220

    Mara You are so creative I have no doubt that you will do a great job tweaking your diet. Since my DH is a heart failure patient I had to learn to use lower sodium products. Knorr's has no salt beef and chicken bouillon that you can add to add flavor also.

    @irishlove I wish you safe and easy travels. I'm sure your family will be so happy to see you guys.

    @mkestrel Those loaves are beautiful! I love cinnamon raisin bread toasted with some melted butter so yummy.!Enjoy

    @intolight So glad to hear your MO was right on top of this! It means the world to us not to have to arrange meds or fight for them. Yikes, these chemo drug prices are just insane. May this treat you well and do a great job.

    @threetree Hope your headache free today. The only thing I can say is I definitely experience sinus issues, ear pain and headaches when the seasons change. I am starting to feel it this week. I also get headaches with my Xeloda. Obviously we aren't on the same treatment I figured I would share. I also feel like since I was on Keytruda for 2 years iI swear it messed with my body chemistry/ immune system. Well I hope you find some answers.

    Well, it's a miserable rainy windy day here but better days ahead. In the pockets of all here and our daily struggles♥️

  • tougholdcrow
    tougholdcrow Posts: 477

    @mkestrel I am a big bread maker myself and those look delicious! Good for the soul after all you've been going through.

  • snow-drop
    snow-drop Posts: 598

    Mara great news yay!

    Intolight, you might want to take Elacestrant with high-calorie food to avoid nausea and make sure your MO orders a lipid panel in time. this medication can increase cholesterol, so it’s good to keep an eye on it. I see in your signature that you've been on Xeloda, we are on reverse treatments! I've been on Elacestrant and now switched to Xeloda. what happened with the Xeloda treatment that you switched so soon, if you don’t mind sharing?

    @sondraf I’m worried about you. please post even a few words let us know how you’re doing.

  • intolight
    intolight Posts: 2,832

    @snow-drop I can see my dates are wrong…sorry. I will go back in and fix them. I was actually on Xeloda for a year right after Ibrance. Then it failed and I was put on Afinitor. I was only on Afinitor for a few months when it put me into the hospital with pneumonitis. They can't prove it but after a week in the hospital running every test they could they decided I was probably allergic to Afinitor. Then I was off all meds except for Zometa for four months while my body cleared out the Afinitor before I went on Verzenio and Faslodex. Tomorrow I will see my MO about the Orserdu and whatever else I need to be on since I am now progressing again. Thanks for noticing this!

    @mkestrel I forgot to mention your lovely bread loves. So yummy! I made banana bread yesterday but of course I used a box mix. At this altitude I struggle with scratch recipes!

  • mara51506
    mara51506 Posts: 7,161

    OK, tried the stuff I ordered from Amazon, the good, bad and pretty ugly. The good, I like the vit d vitamins, one shewable and the other a gummy, both were a nice taste. The Nusalt no sodium was a different story. I sprinkled some on my hand to get a handle on the taste, gross, had an after taste too BUT putting a little bit in a frozen lasagna and a little regular salt was not too bad. Lasagna with a frozen spinach ball was good. I also bought an electrolyte drink, supposed tasted like raspberry, no it tasted like meds with the sweetener used in diet drinks. I decided since that was so expensive, I will go on with it. Put a scoop in some water, stirred it and plugged my nose and downed it quickly.

  • chicagoan
    chicagoan Posts: 1,383

    Good news, Wren!

  • threetree
    threetree Posts: 2,408

    Mel - I didn't mention this in my PM, but I did want to echo what someone else here said about how most medical clinics have patient assistance programs that very well might be able to help. It's my understanding that they know about available programs, and also that some of the hospitals will just out and outright forgive some bills in certain situations. Since this is such a "one in a million" sort of thing, I would think the hospital might just forgive some or all of the cost. Just more off the top of my head stuff, for what it's worth. Also sending more hugs to you, Gabby, and the rest of your family. We will do all that we can to help!

  • mara51506
    mara51506 Posts: 7,161
    edited March 7

    Mel, so glad things are moving along, still sending support your way.

    Cookie, it is clearing up. I put the blame squarely on all the stupid supplements I took so already dumped the magnesium citrate and not taking anything with magnesium. Spent the day with muscle cramps. My only things sticking around are the nusalt, just a tiny dash on food and using salt the way I wish and breathing the 4 7 8 to relax. Keeping the vit D as well. I have not enjoyed food since I made changes so back to normal, more veggies starting from tomorrow and more exercise, thinking a marching sort of exercise.

    I was also really annoyed, some stupid person used my garbage pail, the kind with wheels that I would have to put stuff in at the back and drag up front, with a cane no less. They left it near the steps and a picture of it with trash strewn about as well and told to clean it up. I sent two emails back explaining I have not used it for at least 5 years and would not be able to use one with a cane. Told them to send a mass email to the building. I understand that the pail said unit 5 but most people are aware I use bags only and take it out the front, I know I should not be so angry but it really ticked me off getting an email with a picture like bad resident, clean up your mess.

    Got to say, while in my bad mood was perusing my you tube when an update to an old Molson Canadian commercial came up today and it made me feel happy in these uncertain times.

    https://www.youtube.com/watch?v=_OzbmriDgQc
  • mara51506
    mara51506 Posts: 7,161

    I slept pretty well last night all things considered, it is nice and sunny and above freezing today. Might melt some of the ice and snow a bit. I did not go out yesterday with DB or SIL due to the possible icy conditions. Next week has some much needed warmth and that will be good.

    No plans for today, mostly housework, loads of laundry and some dusting. Doing some floor work, start with sweep, vacuum and mop.

    Got rid of the vitamins with magnesium in them, the citrate not only caused the big D, gave me cramps galore throughout the day even on a half dose of the powder. No thanks, QOL yesterday was miserable with digestive issues and cramps, tossing the pill form of it as well that I did not try. I will keep vit D gummies and the nusalt potassium salt replacement. It does taste weird but I just take a dash and add to food and it really starts to taste like just another seasoning. I have not been enjoying food since the doctor told me to get more potassium, electrolytes and vit D. I also am seasoning as before. I also do not like the blood pressure cuff as it tells me a bit high at one point and a bit low at another. Decided deep breathing will have to suffice and to stop buying stuff on Amazon, keep it mostly for cat supplies. My mind just jumps to things to solve a problem instead of sitting on it and I spend too much usually.

    I am better today though, planning my normal type of meal. Thinking of pulling beans out the pantry, may include some lentils as well. I also want to finish the cabbage slaw. Eat those with rice or noodles. Been craving swedish meatballs so putting together a Walmart delivery, get a couple of boxes of those and looking into more veggies as well. Might get some more of the meatless things as well to try some new things. I will see, not sure what my first meal might be, leaning toward egg and peppers, cooked first then chop in some beans and peppers. Need to check pantry as well, see what else I may have. Include more of the bean variety as well. My other thought, take the same veg stir fry, add more peppers, heat up first and then take eggs, add the stir fry and pepper mix, heat in microwave again to cook eggs, chop up all of the mix with some cheese, heat to melt cheese and it should be really good. I will figure it out.

    In everyone's pocket who needs me, thoughts to those still dealing with big Issues and those who read more than post. In my own pocket to stop being a worry wart and get back to basics and just go with how I feel instead of letting a BP at the hospital send me into a tailspin of worry. I don't do that with cancer, bloodwork should be no different. I also need more discipline with what gets purchased on Amazon cat stuff for the most part. I do hope everyone has a good day

  • mara51506
    mara51506 Posts: 7,161

    Grocery order done, bit of frozen pasta, canned peas and beans. Mini pot pies and meatless sausage patties, think those would be good in other recipes, 3 packs frozen swedish meatballs and trying some egg bites with spinach, parmesan cheese and spinach in them. Couple things replaced, penne pasta with chicken in an alfredo sauce and could not get the egg bites but could possibly make my own. I also got english muffins but only 6. Can easily use for peanut butter or peanut butter and sausage patty sandwich. I will see.

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