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

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  • shanagirl
    shanagirl Posts: 559

    GoodMorning Girlies, Today is a Winnie the Pooh Blustery day. I’m skipping PT this morning. Still dealing with cough but not as bad since pulmonologist put me back on MethlPrednisolome Pak and I’m into the third day. Seeing him Monday when I go for onc folllowup and treatment injections..

    @cookie54 I hope your Dentist visit goes well.

    @mara51506 😊I read your post about Steve King IT. I never watch his movies. I don’t like Horror movies but I am an action movie addict. Doesn’t matter the violence ore gorey stuff, but I am into the action thriller, adventure stuff. I will also watch some movies over & over again if I haven’t seen them in awhile. Some of my all time favorites are Independence Day, The Equalizer Sequels, I love Denzel Washington, I also like to watch Jason Stratham movies like the BeeKeeper, Working Man, Taken and other Liam Neilson movies ,Man of Steel, with Henry Cavill as Superman, I also liked to watch the Game of Thrones, nd House of Dragon Series, Mission Impossible III , the Kingdom Of Heaven, Gorey and long but I ove watching it sometimes, and Troy, and lots of other action movies.🎥

    I was just wondering if anyone knows, how long can bone Mets treatment last before it stops working ?

    So I just want to wish everyone a good day today.🩵🌷

  • mara51506
    mara51506 Posts: 7,161

    Well, have to have dozed off somewhere last night as I was on the couch and woke up at 6 am. I decided to head off to bed and slept another almost 6 hours. I am not as exhausted as I was yesterday so will do some physical stuff. Planning to move the wet dry vac into the living room to live in one of my boxes, easier to pull out as needed, got the attachment gathered up in a mesh bag. That is the first thing to get moved. Next will be the bags of ramen noodles and extra cans of food into one of the lilac containers and stack near the hall closet. One of the other containers will hold things that need recycling and remove stuff from blocking floor space. I still have the option to store garbage in the bin outside at the back door. Easy enough to open and take the garbage over on garbage day.

    Another thought is to finally finish the laundry, I was very absent minded yesterday and did not finish it up. I just do not pay enough attention to it. Removing the wet dry vac frees up the other washer, smaller and repaired by me. Can make sure the sock is on that one too. Sock stops EVERYTHING like lint and pet hair from going down the drain. I also need to change the sock and put the other one in the wash, catch the lint the sock collected by putting it in a mesh bag by itself, then later rinse the bag with lint catchers and fill the new sock. Lots of work but 100 percent less lint down the drain. Once wet dry vac in storage in one of the large boxes in the living room, can use both washers simultaneously which will get everything done faster. Can wash clothes in the smallest washers, they live in the tub, plug is position above to avoid any water, I am still surprised how effective they are.

    Still figuring out meals today, made a mini pizza, did not add anything to it except a squirt of some sour cream and lime. Later debating on an egg sandwich I think.

    I do hope everyone has a good day, enjoying a new series IT, Welcome to Derry. Anyone who has read books, watched the mini series from the 90's or watched the two movies from mid 2010s. If you are a Stephen King fan, this series is entertaining and horrifying at the same time. I like some good horror.

  • Mara - I love the conversation you had with your brother❤️❤️. I miss mine so much…..he’s been gone 4 1/2 years.

  • shanagirl
    shanagirl Posts: 559

    Good Saturday Morning 😊

    @tanya_djamila I hope you are relaxing today in your home and thinking of the fun time you had in your trip to Japan. It must have been wonderful. and also a relief to get home, kick off your shoes, get your comfy cloths on and relax in your own bed. I love the Japanese culture, everything about them. they are mild and very kind and respectful of each other, very precise in their hand made creations and cooking which is an art.

    @mara51506 You must have really needed the rest after falling asleep on the couch till 6AM and then getting more sleep in after waking. I have no doubt you will be back to being the little energizer bunny around the house😊

    @goldensrbest I’m so sorry for your loss of your brother. sending you healing ❤️‍🩹 vibes to your heart, and may you reflect on all the sweet memories of him over the years, and gain comfort from those memories.

  • cookie54
    cookie54 Posts: 1,220

    @tanya_djamila Wow Japan sounds fabulous! So glad you truly enjoyed your trip. Im sure it was well worth the Tylenol and heating pad remedy! Hope you’re home safely.

    @mara51506 Glad to hear you and DB had a nice heart warming conversation. Sometimes we just need to speak from our hearts. Thanks for the well wishes on my Dexa, it worked! My numbers improved so should be able to stay on Prolia.

    @chicagoan @eleanora @intolight Thinking of you ladies and your recent struggles sending strength and positivity your way. Hugs

    Oh how we all miss our mom’s it’s a whole in our heart that never closes.😔

  • micmel
    micmel Posts: 10,100

    Tanya! Japan??? I’m impressed you go girl. That’s exciting. Pics?? Glad your back safely . Wow!

  • irishlove
    irishlove Posts: 697

    Oh how wonderful we get another hour of sleep. Haha, bet everyone is up and at it same time. Poor dogs wouldn't understand not going for walk and pee if we changed schedules. Not to mention @mara51506 kitties. They will certainly meow up a storm if you try to take advantage of that extra hour sleep. Personally I dislike daylight savings time.

    I caught up on what's going on with my sweet friends. Oh how I love that @tanya_djamila had the thrill of visiting Japan. Wishing you great memories to keep for a lifetime.

    Results on nuclear bone scan from portal today. SKULL: faint osteoblastic focus left posterior calvarium likely reflecting a metastatic focus. Patchy sclerosis seen in region on prior ct of head. RESPONSE: Well last trip to MO he was studying that prior ct of head and patchy b.s. I asked straight out if it could be the occipital bone from when I was first diagnosed with MBC. He said possibly. So I'm not too upset about this, plus I did read differential diagnosis could be Multiple Sclerosis. It's running rampant thru my body as I am not on any meds for it. Neuro said Ibrance will do a fine job, only problem is I've been off Ibrance since Oct. 6. Also mentioned prior childhood trauma that could have been found incidentally. I fit that profile to a T.

    Next was Multifocal osseous blastic metastatic disease involving proximal femurs and pelvis. Response: Yeah I know, been diagnosed since MBC of 2023. I just complained that my right femur is very painful. Maybe time to radiate it?? No big surprises here, just more pain. Any guesses if I stay on Ibrance or no?? I'm not sure any of this is considered major progression or not. @eleanora It sounds like we both are dealing with skull mets here. In your pocket for a quick resolution.

    What beautiful memories you all shared about your Mama's. It warmed my heart greatly. I lost my Mama in 1992 to breast cancer. She was 55. I recall lying in a fetal position crying that I needed her one last time. Then I was able to regain that strength that we all need to carry on.

    Here's to a cool, crisp November. Loving tea and biscuits and pumpkin pie and bright red apples.

    In pockets my dear friends, for all your needs.

    Irishlove

  • eleanora
    eleanora Posts: 472

    @tanya_djamila

    Such beautiful photos. So happy that you have those memories inside you.

  • moderators
    moderators Posts: 9,647

    What photos, @tanya_djamila ! Just beautiful 🌸

  • eleanora
    eleanora Posts: 472

    @irishlove

    You and I have two current issues in common - not very well defined skull mets and diverticulitis. Glad we can compare notes. I meet with my RO on 11/4 to discuss radiating the small rib met that was found and also the best way to flush those skull mets out of hiding. I have a brain/skull MRI scheduled for 11/29 (couldn't find an earlier appointment). My MO is leaning toward radiating these areas and keeping me on Kisqali if we can resolve the diverticulitis.

    I noted that you have had several bouts of diverticulitis and recovered from each. I have had one continuous bout since June which was calmed down several times by augmentin, but never actually healed. Finally decided I needed a new gastroenterologist, and she sent me to an infectious disease doctor. He prescribed 14 IV infusions of ertapenem. I have #11 this morning. I have a midline port in my right arm and it's much nicer than suffering someone trying to find my tiny, uncooperative veins 14 days in a row! Concerned about whether it will come roaring back once the infusions are done.

    Fingers crossed that we both find good solutions for the latest problems that have been thrown at us.

  • threetree
    threetree Posts: 2,408

    @irishlove - I was really moved when I read all the missing Mom stories, and I have my own, even after 17 years, but I cried when I read your story. So very sad and touching. Hugs.

    @tanya_djamila - Thanks so much for posting the pictures. They are wonderful and you all look so very happy.😊

    Has anyone had or known anyone who got a bad reaction like Guillain-Barre syndrome after getting a flu shot? It's apparently rare but possible. I got my shot on the 15th and about a week later started getting pins and needles that seem to get worse, then better, then worse. At first I didn't think too much about it, as I have long standing peripheral neuropathy in my feet, and low estrogen can do this too. Then reading around I saw where it can be a post flu shot thing and can be anywhere from mild and transient to severe and long lasting requiring serious hospitalization. I'm seeing my oncologist for routine visit on Wednesday and am trying to wait until then to ask about it, but in the meantime I'm wondering if anyone here has had or has known anyone who's had this problem. I remember before I got the shot, they asked me as a routine question if I'd ever gotten this before after a flu shot and I said no.

    (Sorry, I'm having to type on my phone, something I don't do well, but sitting at the computer is aggravating the pins y needles and joint pain.)

  • mara51506
    mara51506 Posts: 7,161
    edited November 2

    @tanya_djamila Thank you for sharing your Japan pictures, very nice outdoor and outside of building and those vehicles you were driving looked fun as well.

    @irishlove Thank you for sharing about your mom as well, it warms the heart how much we love and miss moms.

    I am debating a shop from the Costco instacart store, would not mind some M&Ms in the jar and a couple of cooked rotisserie chickens. Could do so very much with them and since it is pricier, would use the card that collects the rewards on it that will cut the payment down to nothing. Got two rotisserie chickens and the bucket of M&Ms I would get when used to go with brother. 60 bucks but enough chicken to satisfy. There really was not anything else I needed so stopped there. Apply the credit I get for paying rent, internet and mobile and and the order becomes 25 to 30 and that is fine by me as I will not need another shop for a couple of weeks at least. Fees are pricier but if I limited Costco to once a month, not so bad. Order will be here shortly, dang that is fast.

    In the meantime goals are to keep sink clear, get bathtub clear of dirty clothes efficiently. Found the 3rd lid for the smallest washers, might use those on my tshirts so if need be can do 3 things at the same time, I put those on the floor since they have handles and wash the stuff needing the biggest washer.

    Not sure what to have today, My chicken will be on its way, can chop into beans and cheese to add an extra layer of flavour to stuff or make an egg and chicken with cheese something else. Depending on how much it is used, will decide after it goes to full price if I need it.Walmart delivery does not have as many fees as instacart does but also do not need anything from Walmart at this point and their website is messed up. Costco already is on its way, 2 chickens and the container of M&Ms. Will have to process the chicken first and then incorporate into a meal. Got the chicken so will process it a bit at a time and add some to a bean and chicken type meal, chop beans and chicken with some shredded cheese. I was very hungry so ate some chicken right away and chewed it off the bone, it was very good. Other chicken is in the freezer.

    EDIT I did actually drop the membership for the regular instacart because overall, I do not need to shop at all the different stores. Between Walmart and sometime Amazon, it is cheaper instead of the extra fees and such. I also do not need costco because though rotisserie chicken is cheap, I dislike the taking it apart step in the progress. Better off ordering the 4 tubes of ground chicken for 10 bucks, 4 lbs in all OR the 3 tubes of ground beef, each weighing a bit less tuan a pound.

    Tonight am planning a similar meal to yesterday but with chicken meat added. Taking some chicken, beans and shredded cheese, chop it all together, put in a sprayed frypan with some canola spray, plant butter and garlic spread. Dump the chicken, cheese and bean mix into the pan with some queso and give a stir around. Turn off the heat, add a lid and let it all cool gradually. When time to plate, just dump on the plate and add some binders, a blob of chipotle, capful of the sourcream and lime and whatever else comes to mind. Cannot have M&M tonight, do not need to be up all night.

    I hope everyone has a good day and in pockets as needed.

  • irishlove
    irishlove Posts: 697

    @eleanora Yes diverticulitis is a huge problem. As soon as I suspect that's what I'm dealing with, I call urgent care, who come to house. Wonderful RN or PA's that are capable of diagnosing and treating. Augmentin usually clears it up but sometimes it's back within a short period of time. So I studied the food program to aid with healing the intestines. Biggest takeaway is sourdough bread. No refined breads. Only treat myself to fried fish once in awhile. A rather bland diet till healed.

    Those blood suckers nailed me 7 times first visit to hospital and 5 second visit. I don't have any veins left. Love the idea of a midline. I mentioned it to head RN for next time. Yes about the fear but I believe it comes in cycles and stress doesn't help matters. I have PTSD from this last hospital visit. They would not let me out of bed, turned on an alarm that went off if I even hung my legs. Not easy having diarrhea and having to wait for help. Dignity is about all I have left in this life. Skull mets, as my old MO said it's still bone. So I'm not gonna freak out. No idea medical plan going forward. I hope they zap your mets to oblivion!!!

    @tanya_djamila Oh the pictures are so enchanting. So happy you made more memories…

    @mara51506 I still don't know how you keep up with all the house work and cooking. You are in my thoughts and prayers (if accepted) to know out that met forever… We have a grocery story called Publix, a bit higher end than most. They make a chicken and dumpling soup that is outstanding. You would need to get there by 10 a.m. or it's gone. Chick-fil-a has a great chicken noodle soup. Wish we had that soup guy from Seinfeld. Can't say the name though, as it would be sensitive to political situations nowadays.

    @threetree Your so dear to be touched by my story. It was difficult as I imagine it was for all of us. Dear sweet Michelle's loss is so recent and her words are so sad. I hope that she finds a time that joyful memories will flood over her and dry her tears completely.

    Show of hands of folks on a PPO plan versus HMO (which requires a PA to make a referral for you. I understand there's a larger premium and larger deductibles for the PPO, which I'm not sure is within our reach. Left a message for our insurance agent. No response yet.

    In pockets sweet ladies for all your needs.

    Irishlove

  • shanagirl
    shanagirl Posts: 559
    edited November 2

    @tanya_djamila Hi thank you for sharing those beautiful pictures. I love when people put pictures here. I do especially love @mkestrel ’s pictures too.🥰

    @threetree I’m familiar with Gillaine-Barre. it’s known to cause complete inability to walk from leg paralysis, although not permanent, it takes a lot of pt & meds to get the mobility back. in 2005 when I was in the hospital in rehabilitation after my hemorrhagic stroke, I shared a room with a lady who had Guillaine-Barr. she was in for weeks like I was. long recovery.

  • threetree
    threetree Posts: 2,408

    @irishlove - Yes, these Mom stories are so very moving and sad. I'm just so glad I'm not the only one who misses my mom so much after all these years (17) and being the age I am (72). Sometimes I feel a bit silly. While sad, it's nice to hear that so many continue to miss their moms too.

    My insurance is Traditional Medicare with a supplement, so I can speak to the PPO vs HMO issue. Sorry, but I'm sure there are probably many here who can.

    I listen to both you and @eleanora describe your diverticulitis situations with great interest, as I have been told that I have the precursor, diverticulosis, but they never see anything active on the scans, thank goodness, just the "necessary framework". I can't believe what the two of you have been through with this problem, and I had no idea it could get as bad as you have described. Hugs and good wishes to both of you, and may you find good and permanent solutions!

  • threetree
    threetree Posts: 2,408

    @shanagirl - Thanks for what you know about Guillian-Barre Syndrome. It's all pretty new to me. I'd heard of it, but hadn't heard about any actual experiences. I'm not sure anymore that that is my problem, because as you pointed out, it looks like most who get it wind up in the hospital for a good month. I've got pins and needles down my legs and it all crept up, like they say, but I have not experienced anything that is so bad as to keep me from walking. I guess breathing can also be pretty much cut off, until things improve. I'm back to thinking it could be the faslodex/low estrogen, the weather, ergonomics, or don't want to say it: cancer progression in my spine. I had some bad digestive issues with all of this too (something they note for Guillain-Barre Syndrome), but they seem to be improving, knock on wood. Shana, I can't believe what a trooper you are, and how much you've been through with so many health crises over the years. You just amaze me in that regard, as you have fought and handled all of it. Kudos to you!

  • aj
    aj Posts: 387

    @tanya_djamila , what wonderful pictures!

  • mara51506
    mara51506 Posts: 7,161
    edited November 3

    Well, now that it is November, I do see some snow in the forecast coming for us. Not crazy amounts and still have temps that would melt it down, time for me to take some inventory on winter wear and ice for getting down steps. I do have cleats I can wear and have the spikes or a heartier crampon tip attachment as well. No need to spend time outside in the snow either. Other thing I used to do as well is just leave spikes on my one pair of shoes and change them over to another pair of shoes. Will see how much I need to do and how much salt and melter is needed. I will see. Walmart is inexpensive for different melters.

    I did cancel the instantcart membership. The fees are higher than Walmart when getting an order. When I got the stuff from Costco, it was 40 dollars but by the time they added the fees, not for delivery, just their own, it was 20.00 more, made no sense to me. Rotisserie chicken does taste good but could get Walmart 4 tubes of lean ground chicken for the same price. Beef is a little more expensive, 3 tubes of lean ground beef, each package 10.00. If I decide I must have m&ms, just buy smaller packages and add to the jar that I have. Feel I wasted money with costco. Would be cheaper to book Paratransit to various stores than order off instacart. I also am not patient with getting the refrigerated chicken put aside from bones. I will eat as much as I feel like and may get rid of the other, I will see. One thing I do love is the peanut butter and honey nut cheerios together, eat it by spoon usually.

    I did manage to wrestle some rotisserie chicken, added to frozen stir fry, added an egg and put a generous amount of plant butter and garlic spread. I did microwave for 6 mins, if it needs more flavours but it should be good. Once cleaned up from the dishes used and sink clean, can work on some of the chicken left over. It was a good meal, liked the butter and garlic spread that melted into the stirfry, chicken was good though will skip it next time.

    Nothing else on the agenda for me today so that is good as well. Already cancelled instantcart and will stick with Walmart and do the ground chicken going forward.

    I do hope all have a good rest of day and I am in pockets for all.