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

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  • micmel
    micmel Posts: 10,119

    Irish~ happy birthday beautiful may you have many many more. All my love! Sisters in cancer. ~M

  • shanagirl
    shanagirl Posts: 633

    @goldensrbest Yikes your back procedure sounds as sacarey asI felt about my radio frequency ablation in my cervical spine facets in my neck vertebrae. They burned 8 nerves which is supposed to relive the pain for about a year or when the nerves grow back and I start back up with the pain ..

    @mara51506 your black bean meal sounds interesting.🤔 quick question, how do you make your crispy lentils?

    @intolight I hope you had a wonderful birthday lunch 🥰

    @micmel I’m happy to see you and glad Gabby is doing so well as a BC trooper. glad chemo is over for her.

    so I just wanted to share with you what I was shring over on the bone met thread. I copied it andwas wondering if anyone heard of this disease.

    Today I didn’t do much of anything but sit on the couch in our livingroom where I usually watch the fish in our fish tank. I had my IPad and texted back and forth with my neighbor, who is bed ridden and has been in Hospice for a year and a half. She doesn’t want to live anymore so Hospice comes to her every day, I worry about her so much and I told her that today because of her constant bone and joint & muscle pain.When she found out I was Stage IV and going for treatments back in 2022 she had said she was also in treatment and had so many side effects. She was up and mobile back then and drove her car. One day we were talking and she told me she had decided to stop treatment, hated the infusions in her hip and said she was just going to hospice and die. I felt so bad because she was only 44 . I asked her what kind of cancer she had and she said she had a rare incurable disease that was the cause all of her pain in her bones & joints and everywhere in her body with high fevers and pericarditis around the heart and lungs., a painful salmon color rash on her limbs and torso….She said it was 

    “STILLS DISEASE”

     an Autoimmune disease. , And she was not understanding that she need to see a Rheumatology Specialist. So Over the next year she lost her ability to walk and lost weight down to 88 lbs. Last year when her DH told me she was so thin I felt so concerned for her because we were going thru another cold weather spell in Feb & March. I hadn’t seen her In many months. So when DH & I were shopping in BJ’s I picked up some size extra small warm fleece lounging outfits, and some lavender vanilla candles and a plush fleece blanket & slippers because I wanted her to feel warm and comfy and encourage her, and sending them hot meals over when I was in the mood to cook. My DH is close to her DH and they are always back and forth looking out for each other. But I just don’t understand that she won’t fight her condition just to get more quality of life for herself & her husband. In some ways I see that at 40’s is awfully young to be bed ridden and in constant pain. So I spent the day researching different Physicians in our area who treat Still’s and chatting with her DH and her about getting out of hospice and have a doctor who will treat the Side effects of her disease and scan her regularly. A few months ago she fell and broke her ankle and her hip. Her DH carried her into the car and brought her to the hospital.. She was in for a few days they had her in quarentine because of her skin lesions.. they treated that and sent her home to revive a little and come back for surgery to her hip. But she wouldn’t accept any kind of treatment after her surgery and just went back to hospice. Up until now the ones who’ve been dealing with her won’t give her opioids or help her end her life. So I just needed to rant and share this story with you here. Thank you for listening 🩵🌷

  • seeq
    seeq Posts: 1,276

    @micmel Yay for Gabby! Almost at the finish line!

    @goldensrbest I how the device works well for you. It sounds similar to something the husband of Ann or friend had - it was literally life-changing for him.

    @intolight - Happy belated birthday!

    @mara51506 - you are"The Little Engine That Could!" Keep on chugging along

    Everything is ok here, except a stupid head cold. It's been a week, and I think I'm almost over it.

    Waving around the living room - I'm too tired (or lazy!) to do the tags, but thinking of you all.

  • irishlove
    irishlove Posts: 750

    @goldensarebest The nerve stimulator sounds like a reasonable and not overly invasive procedure. My gosh dealing with pain daily really wears one down. I so hope it works very well for you.

    @shanagirl Well hi gal. So good to see you. I hear you when you speak of the weather and pain. I wish we all had an answer for pain that doesn't involve more pills, etc. The two shots I rec'd in the back over 3 months span felt like WD-40. No help.

    Hi all. Shanagirl has got the list of folks here in Mel's room and I have to applaud her for doing that. I hope this finds you in good spirits and less pain.

    We traveled to the new hospital for the swallow test. It was fast and easy. Radiologist gave me a thumbs up. Yay on that part. The tech is recommending speech therapist to retrain my muscles. MS is the culprit.

    Couldn't sleep due to having upset stomach, both ways. Maybe the barium? Should pass soon, I hope. Used zofron and gummies with ginger. Lots of cammomiele tea. Friday is pet scan. I am looking forward to a break in appts. in March. It all gets overwhelming and I have to sign up for radiation, again. That's a good 10 day commitment.

    Well I think I'll have to start my flower garden all over. Lost a number of plants even though I covered them. Squirrels burying nuts did not help matters, the little buggers. We started to cut back to the line where the plant is alive. We are now underground on most. lol…Gives me a chance to start anew. More daisies, I'm thinking as they are hardier.

    Night all and please take care of yourself…

  • shanagirl
    shanagirl Posts: 633
    edited February 18

    @irishlove Good morning. I had to get up to pee at 4:00 AM and usually I want to crawl back in bed and fall back into deep sleep. This morning I layed down and felt wide awake in the dark quiet and so I picked up my IPad and came into Mels Livingroom and sure enough You are right here with me., funny I am so comfy & wam It;s making me feel tired again, and my eyes are getting heavy so I probably will go back to sleep.

  • cookie54
    cookie54 Posts: 1,298

    @micmel So happy to hear Gabby is on the path to healing! You have all been through so much and I look forward to the day you post she is totally finished after reconstruction. You had the supermom strength to walk beside her each step of the way. I wish you all mental and physical healing from this, hugs.

    @goldensrbest Fingers crossed that the stimulator gives you the relief you deserve.

    @mara51506 Hope your appt and transit goes smoothly for you.

    @shanagirl Well I hope your not extra sore today after PT and you get relief soon. Agree, this damp dreary weather goes right through your bones!

    @intolight Hope your feeling well today and enjoyed a delicious birthday lunch yesterday.

    @irishlove In your pocket for Friday…do we ever actually feel mental relief…sigh…it's tough! Sending positivity your way.

    @threetree Thinking of you and hoping and hoping your fatigue is lifting

    Hi to all here and hope you have a good day. Damp and drearies again here but I'm loving the extra daylight hours🌞

  • shanagirl
    shanagirl Posts: 633

    @mara51506 Thank You. I’m going to try your lentil recipe it this week😊

  • cookie54
    cookie54 Posts: 1,298

    @mara51506 Safe travels to Herceptin appt today and I hope you're feeling better today❣️

  • mara51506
    mara51506 Posts: 7,339

    @intolight The wig sounds lovely for sure and styling it will help for sure. I have 4 pixies all the same. Been wearing two for years, blond with dark roots, matches the bit of hair I have left. They are a short haircut as well. I don't add product to increase lifespan for me but did get a 30 dollar one I style and put all sorts of stuff too. Enjoy your wig.

    Made a medium size chicken pie, letting it cool some and then will eat, taking mucinex, have a nasal spray arriving as my nose is stuff with the Herceptin and really not in the mood do disregard and let a cough set in. No thank you.

    EDIT appointment was good, wound up waiting about an hour or so past the end of the echo but it gave me time to grab a sausage english muffin, chocolate dip donut and a ginger ale since it has no caffeine. It was good, went to wait for the ride at the front of the cancer clinic, yapping with other patients from there until ride showed up.

    Was craving mcdonalds, decided to have broken up ramen, it is presently sitting with a lid on, added taco, sloppy joes seasoning and white salt. In the air fryer, making up lentils, hotdogs, two of them, heating for 15 mins. Once done putting in a bowl with a binder, probably mayo or something else, tiny amount of salt since the noodles will have absorbed the salt but it should be good. I still prefer breaking up the ramen.

    Forgot to post, I do have left overs of the ramen meal, delicious meal, will see how to combine with eggs I think. Only have two hotdogs left in fridge, still have another package of hotdogs in freezer but thinking I would like to heat up beef from the freezer, I will see. The dog chunks done up in the air fryer are really quite good.

  • cookie54
    cookie54 Posts: 1,298

    @mara51506 Glad appt went smoothly and you had a nice treat for lunch. Sounds like you're really enjoying your air fryer and I certainly enjoy mine also,

    @intolight Hope you have a bit more energy today. What are you crocheting? Many people in my family crochet, mainly beautiful blankets and they are the warmest! I never learned to do more than the basic chain my mom had a difficult time showing me being I am left handed. I admire the talent of all the beautiful blankets etc that are made.

    Well supposed to be the calm before the storm here today, hope to get outside today. Possibly up to a foot tomorrow into Monday.. Was hoping for an early Spring but certainly doesn't appear that way. I'm having my daughter's bridal shower 3/8 so hoping we are done with the storms by then, fingers crossed.

    Hi to all here and hoping it's a quiet nice weekend for all😘

  • mara51506
    mara51506 Posts: 7,339

    I slept pretty well, think was a combo of the mucinex and the cough suppressant to avoid dry cough. I really don't want to be super productive. So far, nothing much happening which is good.

    Meals are pretty easy, leftovers from yesterday night, think I will add some black beans in but chop them up in some chips like doritos, I still prefer a smaller bean. I could also open up some peas and corn, make them crispy as well. Debating a small shop currently, use some credit balance on one of my cards possibly.

    I put through an order at walmart for 35.00 plus fees so 50 bucks but got a whole bunch of burritos, couple of chips, I can use those if I need to chop in some beans instead of using the air fryer, I will see.

  • threetree
    threetree Posts: 2,564
    edited February 22

    @cookie54 and @shanagirl - wishing you both extreme safety and lots of warmth with your coming storm. I'm wishing the same for any and all others that might be affected. I only know directly that Cookie and Shana are in the path.

    Happy Sunday to all. Hope everyone has a restful and pain free day! Hugs to all in the living room.

    Edit: I think Mel might be set to get the big snow too, so including special wishes for her too.

  • threetree
    threetree Posts: 2,564

    @shanagirl - oh, that roast and veggies sound great for a snow storm. Sounds like you're all set, and can just cozy in, watch the birds, etc., and enjoy the wild weather from a safe place.

  • wren44
    wren44 Posts: 8,109

    Runor, I saw a video of Wyzeguide making sauerkraut so he may have recipes for fermented food.

  • threetree
    threetree Posts: 2,564

    Rumor, I don't know where you live, but around here, many of the natural food stores, organic co-ops, etc. sell a lot of fermented food. I eat fresh unpasteurized sauerkraut from a local co-op daily, and also probiotic yogurt. I think it's the reason I've had not too much stomach trouble with these cancer treatments. I've never really heard of or tried fermented fruit, but vegetables can certainly be good. My local co-op where I get the sauerkraut also has some fermented carrots with ginger, and they are really good too. A lot of people swear by kim chee (sp?), which is also available in a lot of stores, but I've never tried it. Just some thoughts.

  • mara51506
    mara51506 Posts: 7,339

    Got some microwave butter popcorn. I am thinking that they could be chopped up to stretch out a meal like beef, eggs or even rice, gives a massive boost of fibre and nice buttery taste.

    Tonight I had straight up butter popcorn, it was very good with extra butter and salt.

  • shanagirl
    shanagirl Posts: 633

    Hi @runor, I make my own Kefir (fermented Milk. i keep the culture going, and refresh it regularly. I love it and my pugs love it too. I’s a great probiotic. I learned to do it about 8 years ago, 🩵🌷

    https://www.culturedfoodlife.com/

  • intolight
    intolight Posts: 2,969

    @shanagirl @runor My DH has kefir every morning but I gag at the smell. He uses a paper cup and throws it away after. I do eat Greek yogurt most days though only certain specific ones. I used to not be able to eat frozen yogurt either but they put so much other stuff in it now I can do it.

    @runor It is amazing that we have to train our docs to our bodies, but at least most of them listen. I was told by a doctor if they don't listen, run to another one. Their job is to help us. I have advocated for myself ever since and use that as a major indicator whether I will stay with that doctor. The problem is the shortage of docs make this difficult.

    I am sad…My DD , DGD, and I get a pedicure together a few times a year and I can't go now that I am on chemo. I don't want to chance it. I miss them!