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

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  • sf-cakes
    sf-cakes Member Posts: 600

    Happy birthday to you, Goldens ❤️

  • candy-678
    candy-678 Member Posts: 4,166

    Happy Birthday, Goldens

  • tanya_djamila
    tanya_djamila Member Posts: 1,528

    Happy birthday Goldens.

    Thanks Mara for pocket duty today. I get my faslodex injections.

    Yesterday I stayed in pajamas fatigue and pain from mouth lesions and other issues. It doesn’t take much to start the pity party over here. I willed myself to get up and bake cookies with my grandkids. They love to crack the eggs and none ended on the floor. Afterward cvs finally had magic mouthwash after more than a week of back and forth about missing ingredients.

    Grateful as soon as I had mouthwash.

    Afterward going to check on my friends cat as she’s out of town. I may pick up something for dinner. I’ll see how I feel.

    Take care all

    Tanya

  • intolight
    intolight Member Posts: 2,319

    Happy Birthday Goldens.

    So, I thought I would call the triage nurse since I almost passed out and was dizzy for about five minutes which has been getting worse lately. I was hoping she had some helpful words. But she said basically (my wording) because of all the crap I am taking this is going to happen and I am probably going to get worse. I am supposed to monitor myself, make sure I eat and drink water, and let my PCP know when I see him in two weeks—two days before I see my MO. So no help at all. She was telling me all the stuff I know since I have been going through this for the past eight years, but I was a little hopeful. My bad. I am not sure what I was hoping for, but should have known better. My blood sugar is good. My BP goes from high to normal within just a few minutes, and my bloodwork is "stable" in her words. So like the rest of you I just need to accept all this and let it ride. I am a "fixer" so this goes against my normal grain, but perhaps I am just having a bad week and just need to find a hole to crawl into. I just hate to keep scaring my family…

  • sondraf
    sondraf Member Posts: 1,665

    @tanya_djamila i had a pj day today too after long hospital day yesterday and walk to the tube station. I felt sort of guilty...then fell back asleep each time :) You really do need to push yourself to do things, though, but once you get going you keep going.

    Happy birthday @goldensrbest! I hope you had a fab meal with family and everyone let you know how loved and appreciated you are:)

    @sf-cakes I went with the Optibac brand as it had specific strain i needed to boost post c diff. However, after seeing what you ladies are taking, I think ill check out those Culturelle products with a broader spectrum. I think a happy gut can take uou far and that whole link is only started to be considered vv cancer. What's one more pill, at least one im choosing to take, in the evenings anyway?

    Today was ok, as noted it was a post infusion recovery day. Scan results were confusing as they showed worsening but there was a month between last scan in April and when I started Taxol that we suspect a lot of this stuff happened during that period. We'll scan again when I get back from the US but I have another cycle of three Taxol here to see if it continues to improve stuff or not. But my pain is under good control and ten ton leg is softening and lessening so we are getting somewhere more positive at least.

    Got loads to do and I don't want to do any of it, so I guess I'll start with something small while the football match is on in thr background. Have a nice day everyone!

  • threetree
    threetree Member Posts: 1,561

    A very Happy Birthday to you, Goldens!

  • micmel
    micmel Member Posts: 10,025

    Happy Birthday Goldens. Hope it was a good one. Hugs to you

  • cookie54
    cookie54 Member Posts: 806

    Happy Birthday Goldens! Hope you enjoyed your day🌺🎂

  • mara51506
    mara51506 Member Posts: 6,390

    Sunshine, saltines really do help if you don't know how stuff will go down. Rice is always a good option as well and quick options for food are also very good to have. My problem with diet nowadays is not knowing if something is going to cause problems on the opposite end. Never so serious that I cannot shut down the pipes and when going out, I do make sure that take loperamide before so that nothing happens. Small concessions and not bothersome.

  • irishlove
    irishlove Member Posts: 562

    Hope you had a wonderful birthday Goldens. I'm only 6 months behind you. My wish for you is many painfree days in the future. Oh yes, and remission that lasts and lasts. I wonder if they make a birthday card like that?

    Mara, I marvel at your cooking sensibilities. Sounds so good, too. My diet consists of lots of cereal and chicken, turkey, mashed potatoes and rice. I miss eating what I want, when I want it. Since DH does the cooking now, it's a lot of frozen dinners, but I am appreciative that he takes care of me. I sat on the stuffed recliner and enjoyed the Phillies game tonight. Just enough rain came to sprinkle the grass and flowers. But it made going outside terrible humid, sticky and as my Grammy use to say, close. I totally understand labored breathing, but I believe it's extra difficult in 100 degree weather.

    I hope all were safe from the storm. Hoping we all can dodge any more hurricanes this summer.

    In pockets for scans and life in general.

  • mara51506
    mara51506 Member Posts: 6,390

    Irish, I understand your digestive issues better now. I know that seasoning could be an issue but you should be able to cook rice in a broth be it chicken or beef vs seasoning which may be an issue just to give some variety. Cereal is always good to me as well. In your pocket for more foods being able to be eaten.

    I am awaiting delivery of my even smaller portable washer, will live in the tub next to the bigger one. I am also awaiting Crispy Minis farmhouse cheddar flavour, I will see how it tastes.

    Yesterday, I made a bowl of fibre 1 cereal even better, put a bit of the reese cookie mix, comes powdered with some mini reese pieces and peanut butter protein powder, was super filling but not bad. I have also mixed the reese cookie mix in peanut butter as a snack. Today I still have 2 more frozen meals to eat due to not having enough room in the freezer, need to open lentils or beans to put on top of the frozen and will put something garlicky in the seasonings I think. May also grind up a couple hot dogs in a meal or grill them on my wee grill, cannot decide what I want to do yet, so much fun deciding. I do have to slow my roll on the food purchasing, running out of room and the hooks and bags cannot accomodate much more of the stable pantry items.

    Other than all that, laundry is still happening, since the original portable washer works if I agitate it for shorter cycles, will keep using it, should help having two that I can use so the cloths don't run out.

    Hoping everyone has a good day and in pockets for everyone else to feel better as well.

  • mara51506
    mara51506 Member Posts: 6,390
    edited July 10

    Got some tax money so put through another Walmart grocery order, bought several of the beefless grounds, they are adaptable to several recipes some mexican rice and frozen pizza among other things. More pantry options, will look for places to put them. I have not eaten yet, will be waiting for the order to come and baking the pizza for my first meal. I can make so much with all of this food, it will be enjoyable to create more recipes with what I have and what is coming. Just need to keep up on the eating knowing that each piece of pizza can live in the fridge for up to 4 days from now. The pizza was awesome as well.

  • mara51506
    mara51506 Member Posts: 6,390

    SF Cakes, we had that weeklong triple digit gross heat wave not long ago. A more normal summer would be humid, it almost always is humid unless winds are NW or N which gives us a break, normal temps high 80s lower 90s including the humidity. Our building did give residents the split AC which makes it cold but I keep mine at 75 or 24 C which is comfortable and set to shut off when reaching that temp, bedroom set at 22 C and a fan blows that air to the living room. It is grossly humid in Southwestern Ontario, London is bad but Windsor is usually worse, both temp and humidity higher. I could take temps in the 60's.

  • chicagoan
    chicagoan Member Posts: 1,026

    I don't have a/c. I enjoy the challenge of keeping my home comfortable via cross ventilation. I also find that my body adapts to the heat in the summer and to the cold in the winter. Now I am quite comfortable when it is 80-82 in the house. I have several trees that also block the sun and help to keep things cool. I've never gotten used to a/c. I hate it in hotels and try to open windows whenever possible. A/c feels very stale to me compared to fresh air. I also hate whiten noise so I rarely use fans. Hope we are all keeping comfortable in our own ways.

  • mara51506
    mara51506 Member Posts: 6,390

    Chicagoan, that is great that it works for you. In my case, I need and want both the breeze created from my fan but also the less humid air, 75 is good for AC but at night, I do turn the temp up a bit in the living room. Once the nighttime temps cooldown, I will use the AC in the bedroom as a window fan. I cannot sleep with cats so door is shut and living room gets pretty hot so will keep the constant temp. At night keeping room at 70 so I can sleep. I am waiting for some less humid and cooler weather as well to bring in fresh air. I don't mind the cold either, enjoy wearing fleecy leggings and warm hoodies.

  • mara51506
    mara51506 Member Posts: 6,390

    Chicagoan, that is great that it works for you. In my case, I need and want both the breeze created from my fan but also the less humid air, 75 is good for AC but at night, I do turn the temp up a bit in the living room. Once the nighttime temps cooldown, I will use the AC in the bedroom as a window fan. I cannot sleep with cats so door is shut and living room gets pretty hot so will keep the constant temp. At night keeping room at 70 so I can sleep. I am waiting for some less humid and cooler weather as well to bring in fresh air. I don't mind the cold either, enjoy wearing fleecy leggings and warm hoodies.

  • gailmary
    gailmary Member Posts: 494

    Carol, good thinking to review your trust. I should too. And I need to look into getting a DNR for a fella friend I help.

    Scans monday. Bone scan shows nothing new. Yay. Still waiting on ct report.

    The weather is starting to get Scarry. Heat hadn't been too bad here. But the humidity is too too much for me. I just realized it's one of my meds SE. We've been getting rain all spring. Downpours. Flooding isn't too bad, usually.

  • seeq
    seeq Member Posts: 1,161

    I don't think we could get by without AC. I know people did, obviously, but no thank you. I had the whole family for the long weekend and it was 104° on the 4th and overnight brought it down 40°. Our high the next day was a blissful 75° with rain. It was the perfect excuse for card and board games and short naps. The rain stopped just in time to cook dinner outside. We're back in the high 90s, per usual for this time of year.

    I remember hearing a question from several years ago about which invention, in the last 100 years, had the greatest impact. It was air conditioning, because it changed our lifestyle (and increased productivity).

    Intolight - somehow I missed adding your name in my last post about the triage nurse. I figured you knew who I was talking to anyway. My parents lived in Denver for awhile. I remember they had some kind of whole house fan that they could run for 10-15 minutes with the windows open to exchange all the air in the house and cool everything down in the evening.

  • sondraf
    sondraf Member Posts: 1,665

    Im a big fan of ceiling fans and cross breezes, but at some point you need A/C just to dry out the house. You can get by with a good ceiling fan for a long long time in the summer lol. Wish you guys would send some heat this way, I had the space heater on the last few afternoons and tomorrow its going to struggle to get above 63F, along with rain all day. I feel like we've had the same grey 50s-low 60 degree days for the last 15 months!

  • cookie54
    cookie54 Member Posts: 806

    goldens Love the fun facts! Wow good for your sil, my brain stinks anymore with concentrating on reading. Short spurts and word puzzles to keep my brain somewhat sharp lol.

    I definitely can't live without AC! As much as I would rather be in fresh air the humidity is just overwhelming at times. Plus my body doesn't regulate the heat the way it used to.

    gailmary Happy to hear bone scan looked good, fingers crossed for CT!!

    Mara Love the election post, make me chuckle…so true!. I

    Carol Looking forward to your next blog always love your titles too. You have a gift to express your thoughts. Hope you are feeling ok.

    sfcakes Hope the probiotic is helping.

    Tanya Hope this is a better week for you and your mouth is healing well.

    Well I'm back to limbo but better than a definite bone met. CT shows mixed lesion on T-3, PET and MR it's not demonstrated. So we play the wait and see game until next CT in Sept. Will try to just enjoy the summer and put progression thoughts aside.

    Hi to all here and in everyone's pocket for all needs this week and always. Hugs.