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

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  • irishlove
    irishlove Member Posts: 562

    @sondraf I'm sorry that you had such a long, unnecessary messed up day. Glad you are back home in your own bed.

    @candy-678 I understand you are too tired to fight LTD company. Can I please throw out one last suggestion before you throw in the towel. I was in your situation and I did fight it. I won. Now here's the part that may have made a difference. I told them I'd consider a "buy out" if they don't wish to fight this claim in court. It worked. They offered me 50 per cent of balance owed to me which was almost in the 6 figure area. I was pretty young when I went out on disability with MS.

    @chicagoan OH I hope you enjoy any concerts coming to town. Loved going back in the day. I actually saw ELVIS, May 1977 at Spectrum Stadium in Phila. It was the greatest.

    Hi all and all that i may have missed. Ibrance came today. Yes, siree, I said a little prayer over my first 75mg pill and treated myself to cranberry grape juice. I feel much more secure (in my head, anyway) to be back on meds. I went out yesterday to pharmacy and Lowe's and got light headed and nauseated. It was from the terrible heat. We're suppose to go to dinner tomorrow night to celebrate our anniversary and I'm thinking about door dash instead. DH said 105-107 in Orlando. We won't be that hot, but what if there are lines waiting or their ac can't keep up. I can not handle heat due to MS. Make that call tomorrow afternoon.

    Blessings to all and in your pockets.

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

    Thank you to all of you ladies for all your support in all this disability hoopla.

    Sondra- My church is mainly seniors, and we are a small congregation. They would not be able to help.

    Irishlove- I admit I do not understand all this LTD stuff, but I don't know if I have a "buy out". The LTD company knew I had SSD and how much I get from Social Security, and they based my benefit from them on that amount. It was a small check each month. I have never read in any of their documents that I have a lump sum that they were dispensing from with each month's payment and that some of that sum would be left over.

    I am ok, well not really but, I am ok with losing that small check each month. I have SSD still and that is the most important. I just didn't think that with MBC being incurable that anyone would say I am no longer disabled. And I wanted to let you all know that there is the possibility that we can be deemed "not disabled" if our scans are stable/NED/NEAD. And I told them of my sedentary lifestyle- reading, church, miniscule volunteer activities (sedentary things too). I do not travel, nor am I physically active. So those on here that are Stage 4, but yet travel and do various strenuous things and are stable in their cancer, watch out. You may be told you are able to go back to work.

  • cookie54
    cookie54 Member Posts: 805

    irish So happy to hear Ibrance came and your back on track with that. Hopefully next order will go smoother than this one. Happy Anniversary ,enjoy your celebration and even if you do order takeout it will still be special. With that heat you may just enjoy it better staying at home.

  • micmel
    micmel Member Posts: 10,025

    happy anniversary Irish. Enjoy whatever you do !
    candy~ mind blown 🤯! Very concerned that would happen. Seems impossible to me honestly, if they have an appeal. I would smack that down. I am on very heavy pain medicines and I nap every 4 hours basically. There is not a chance I’d be successful even sitting there, where my cancer is in my spine there’s just no way. I can barely bend over without pain. Just really disappointed for you! I’d still appeal, it’s not like the damages to our body haven’t already been done! Are you on meds?

  • mara51506
    mara51506 Member Posts: 6,387

    Candy, I lost all my strength even with PT and OT exercises so no one is watching me going oh yeah, she can work. I am still in your pocket.

    I have my Herceptin infusion, Paratransit coming between 1105 and 1125 am. Will be bringing snacks in case it is a long wait which would not surprise. Still running window AC at 75 and the new split AC, also at 75. The split AC made a real difference when getting up and opening the bedroom door, no humidity. I am sure the neighbours enjoyed their AC as well. My cat is starting to not stop and stare at it as if it is a monster. Also got sports bras that finally fit my lone big boob, hopefully stays that way.

    Simple breakfast, I put half cup black beans and two mini pot pies. Cleanup is easier with one plate, going to add ketchup and mayo with salt. I am making myself get used to regular canned beans without feeling the need to chop them all the time. I don't mind if chopping them into high fibre cereal and adding cheese but sometimes, need to just eat them plain. Still drinking white milk as well which is good.

    I hope everyone has a good day, in pockets inccluding mine that it won't take 84 years to get in as after a holiday, it is usually busier.

  • chicagoan
    chicagoan Member Posts: 1,026

    Happy Anniversary, Irishlove!

  • mara51506
    mara51506 Member Posts: 6,387

    Happy anniversary from me as well Irish.

    I put on some makeup, bbcream and blush, I feel more human, changed clothes and only have the wig left to put on. Got my phone with music and regular phone as well with a charger. I do like it only takes 15 mins to get ready now as well.

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

    Mel- No, I am not on very many meds, so to speak. Blood thinner, BP meds, and of course the cancer meds. My doctors have suggested other pain meds, etc, but I don't like taking anything if I can help it. I don't want to be spacy. I do have a lot of pain with the arthritis affecting various joints- hands, feet, shoulders, back, and hip- but I just deal with it in my private home. I hurt all the time, that is just the way it is. I limp. I use a cane. I am limited with what I can do physically- upper and lower body. I have to reposition often- in bed at night and during the day while walking and sitting. I just deal with it. I live a pretty sedentary life.

    But the LTD company was thinking that I don't have to be physically active to work. That I could hold down a desk job. Sedentary job duties. That mentally/cognitively I am able.

    So, really, us that are stable on our treatments, and how we post on here, would really be able to work in their minds. We can converse. We make sense. We are getting along ok. That is their view, not mine. I am just telling how they seem to feel about cancer stability. We know the nuances of how we feel on these meds, the scanxiety, the side effects. But they see stable cancer and we could be in the workforce and not getting benefits given to us. They made that very clear in their letter to me.

  • threetree
    threetree Member Posts: 1,559

    Happy Anniversary, Irish!🎇

  • mara51506
    mara51506 Member Posts: 6,387

    Candy, is your brain still working the way it was before the cancer and all the chemo and drugs. Does not matter if you can sit on a particular type of job, if you are dealing with nausea, exhaustion and all the other goodies we have to deal with, your ability to work is still compromised. I can say without hesitating that though I am stable in my body, brain and internal head bleed, I have no ability to work even with a sitting job. I hope you can find a service or your MO can send letters to those stupid people trying to force a terminally ill woman off disability just because you are stable. That does not describe your actual condition. Assholes. I am sending you hugs.

    I just got back from Herceptin, pleasant rides on PT and a long wait, not unexpected due to Canada Day, more people there but had cheese, cookies and ginger ale, now ordering a burger lunch. I want to make sure to eat well today and go to bed after. I also noticed that normally my building would feel stuffy in the hallway but now it was more comfortable and cool to wait since everyone has AC now.

  • shanagirl
    shanagirl Member Posts: 419

    @candy-678 I just want to say that @mara51506 is soRight.!! I totally agree with her. I hope your MO sends those Assholes a firm letter to sternly let them know and have it on your records that you, his patient, has a terminal end stageIV condition and doing Chemo therapy drugs and Other treatment to help you get through this progressive disease that cause pain and various other side effects that would prevent you from ever committing yourself to an employer or any company to work even the minimum hours during the week. This would be so stressful to his patient and could cause her enough pain and anxiety resulting in no longer remaining stable but could add to progression of her cancer. , @candy-678

    I can’t even imagine being forced to go back to work with the way I feel from day to day.

    I just had my treatment injections of Fasolfex and Xgeva yersterday and thes drugs are cumulative so each day gets worse for the next. 2. Weeks or so.. stay peaceful girl, I’m glad you won’t have to lose your LTD.🩵

  • irishlove
    irishlove Member Posts: 562

    Candy, I was on both LTD and SSDI. I heard Dave Ramsey talking about "unknown buyouts" from LTD companies. They want you off their books and if they can't scare you off, they will offer a buy out but only if you request it. And remember it is greatly reduced. But some of something is better then none of nothing. It's your money, your insurance benefit, you earned it and damn it they need to honor it. Hey I threatend to call the Insurance Commissioner when they called me at home whilst I was bedridden with MS. It worked…..

    THANKS everyone for the wonderful anniversary greetings. For about two hours I forgot about this illness and enjoyed a meal and good company. I'm so limited what I can eat, so Carabbas Chick Marsala hit the spot. I only eat half a portion so now I have lunch for tomorrow. Ice cream cake for dessert, DH broke it out tonight but I decided too late and I'll wait. You girls are the best…

  • mara51506
    mara51506 Member Posts: 6,387

    Shanagirl and Irishlove, good advice for Candy. Still in her pockets no matter what she decides to do.

    Happy Fourth of July to the US members.

    I have not got too much on the go, feeling the usual exhaustion from Herceptin. Approaching everything a bit at a time to get more done, very hungry though. I am thinking beans chopped in with cheese, cereal and a few croutons. I love the fibre dump even though still being cautious with immodium since the first couple days can be sketchy from a digestive angle. I will also pull out a can of chicken and grill that. Should last over 3 meals I believe. Breaking down the pile of boxes and storing shopping bags I get from Walmart, I usually use them for storage that is hung up.

    Ava is still scared of the split AC unit which I keep at 75 same as the bedroom. I would freeze otherwise. At night when the bedroom door is closed, put my AC to 71. For Canadians that is 24 on both units and 22 at night, both run on economy so they can shut off and not use as much electric.

    Not sure if seeing DB and SIL, sitting on my hands not to call as he is working alot so allowing them to call. I let them off the hook of feeling like they need to take me out every week when older DB works so much.

    I hope everyone has a good 4th who celebrates and in pockets where people may need me.

  • threetree
    threetree Member Posts: 1,559
    edited July 4

    Thanks for the Happy 4th wishes to the many of us Mara, and a belated Happy Canada Day to you!

  • tanya_djamila
    tanya_djamila Member Posts: 1,528

    happy anniversary @irishlove I’m happy you got your 75 mg. Enjoy your ice cream cake! How many years have you been married?
    Pocket duty for @sondraf . I hate hospital adventures. Mentally and physically excruciating.

    @shanagirl beautiful advice you gave to @candy-678. Really well written. She could use your exact words. No employer would want us as employees. Too many doctor appts, side effects, fatigue etc. Bottom line is money. I wasn’t aware that there were buyout amounts but I imagine every company wants to get rid of paying disability claims. Really unfair.

    Mel how’s Theo?

    Had xgeva infusion Tuesday. Still feel sluggish. A friend is supposed to stop by today. I feel too tired to converse in person with anyone. Reality of my life.

    Waving hello to everyone - stay cool. 😎

    Take care all

    Tanya

  • mara51506
    mara51506 Member Posts: 6,387

    Candy, I am sorry to hear you group lost another person. My condolences to all who loved them.

    I am working through hotdogs that I just found in the fridge, I don't think they were in there long. Will consult cheap meal ideas on facebook on ways to use them. Chopped up 2 hot dogs and placed on a tortilla with two eggs, added the hotdogs, added some of the cheese sauce from my taco bake along with taco seasoning and some garlic. Going to bake at 375 to cook but not burn eggs and melt the slice of cheese I added. I was very close to ordering breakfast but would prefer to use my own ingredients. Since a burger meal is around 20.00, I would prefer to buy groceries or something from Amazon.

    Edit, learned from the tortilla, egg and hotdog meal, cooked well but I neglected to add cooking spray so soak the pan since the tortilla stuck like cement. The rest was good, added some ketchup and mayo adding more flavour. Superfilling I must say. I will have some milk this afternoon and chop up cereal and beans or lentils for dinner.

    Other than that, more laundry to be done, still thinking of getting more mesh bags, I used to have quite a few but unsure where they went. Mesh bags to wash clothes etc and avoid them rubbing on each other and creating pills. Moving the panda spin dryer back to bedroom closet since is rarely used and does not need to take up room in the washing area (formerly the bath tub. I do want to do a bathtub wash of blanket this weekend so will need to move stuff out but that is fine

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

  • sf-cakes
    sf-cakes Member Posts: 599

    Mara, it sounds like your split AC unit is working well! Hopefully your kitty will gradually get used to it.

    Candy, my local group just lost a young woman in her 30's, it's incredibly sad.

    Irish, so glad you got your 75mg (that's the dose I've been on for over three years now), and that you had a lovely anniversary.

    Theo is the cutest!!

    Finally got some sleep last night, had two nights of wicked insomnia prior to that, who knows why. Figured the firework kabooms would keep me up, but fog rolled in and dampened my neighbor's enthusiasm, fortunately! Fireworks are illegal here but you wouldn't know it from all the noise. Grateful for sleep, having tea now and then headed to a nursery that has a coffee and pastry cart, as well as holiday sale on all plants ❤️

    Love to all here, may we please have a peaceful, pain free day!

  • cookie54
    cookie54 Member Posts: 805

    tougholdcrow What the heck…that's just crazy! Glad he is doing ok and hope you both enjoy your island getaway

    candy Ugh so sorry to hear of another beautiful life taken…just heartbreaking.

    mara Another productive day for you as you are such a motivator for all here.

    Yes that Theo is quite the little hunk.

    tanya Hope you feel more energetic today…gosh don't we all know the feeling of just being to tired to even converse.

  • micmel
    micmel Member Posts: 10,025
    edited July 6

    Thank you Mara~ we try to take good care of him, we love him very much. My sweet DH each week cooks up boneless chicken for him and shreds it and adds carrots. It’s looks just like fresh pet. His coat is healthy and he get one table spoon of blue Buffalo also for some nutrients that he would need. But so far he’s growing good and is very healthy. Thank you for saying that. Made me smile. lol @ hunk!
    I had heard rumblings of the plague on the news today and how there was a case reported in the us. Like wow! Hope DH will be ok! With meds. Strange stuff sometimes!

  • sondraf
    sondraf Member Posts: 1,664

    That is so serene, @mkestrel. I dont like camping but I think at this point I could do with a few days away from the world in the wilderness! Waking up to that view would certainly help renew the soul.

    @cookie54 lol at Theo the little hunk. Its true though, he is just too adorable for words. hubba hubba!

    @irishlove congrats on 45 years of marriage!

    I finally got my scan done yesterday as Wednesday when I was supposed to have it I got flagged for another 'fever' at blood testing (right on the line at 100F) which set off a bunch of craziness including getting stuck with another IV antibiotic I didnt want or need, and being sent down to critical assessment unit which is this terrible, grim soviet-era looking space with no windows but a bunch of bed bays and recliners. I eventually lost it with the poor junior oncologist on duty that microbiology already had their fun playing chase the CRP number in April and they dont get to do it again, let me go home if we aren't waiting on anything. Someone three bays down was shouting 'what are you people doing to me?' so I mean hey I guess I was in good company. Look, I get sepsis is a concern but lets not overrule common sense here either.

    Hope everyone has a nice weekend - my sister and brother on opposite ends of the US wrote how hot it is, here we had massive rain storms and low 60s which is boring. Feels like September and not July.

  • mara51506
    mara51506 Member Posts: 6,387

    Sondra, I am sorry a low grade fever got you stuck in such a horrible place and on another antibiotic and totally fair to want to be released if there is nothing being waited for, hope you are out now or get out soon.

    mkestral, the scenery is beautiful, glad you experienced it.

    No real plans today, usual housework, still breaking down boxes as they are being taken with garbage this Sunday night. Going to try another tortilla breakfast with beans and fibre 1 this time, chopping in cheese and will figure out seasonings later. Making sure frypan is sprayed with cooking spray as the tortilla used yesterday would not come off the pan. I soaked it all night. Laundry is slowly getting done, got more mesh bags from Amazon so I can properly wash shirts, bras and delicates and looking forward to my new vileda mop because it will have spray. Going to use vinegar and enzyme to spray the floor. Once dry it will smell clean.

    I am hoping everyone has a good day and weekend, and in pockets as needed.

  • threetree
    threetree Member Posts: 1,559

    Mkestrel - Your camping trip sounds like it was fabulous! Where do you get the energy to do something like that? These drugs wipe me out so much, I wouldn't be able to "endure" such a fun opportunity, even if it came up. More power (and fun) to you.

  • sunshine99
    sunshine99 Member Posts: 2,723

    Sheesh, sondra, you just can't get a break. I hope your scans come back at least stable and that your fever behaves itself.

    I'm losing weight again. New meds as the cause? New mets? Who knows. I started Afinitor on Monday and am down 2.5 pounds. No nausea or any other reason. Not super hungry (who, ME?)

    Am working on about four different blog posts right now. One is almost ready to go, three more are in the halfway done stage. Future titles include:
    PAs and PAs
    The Hairs on My Head
    Driver's Education and Simulators
    Shucky-Darn!

    Hope everyone has a good weekend with reasonable temps.

    Carol



  • intolight
    intolight Member Posts: 2,317

    @sondraf So sorry you are struggling yet again. Praying you get relief soon.

    @sunshine99 Continued prayers for you my friend. I am looking forward to reading your new blogs.

    @mkestrel I love camping but am unsure I can manage it right now. I do well to sit on our back deck! Good for you. Beautiful pictures.

    We had 45 fires in Colorado Springs on the 4th: none were serious but all were fireworks related. (My DH is a chaplain for the local fire department so he can see the reports.) Fortunately we had none in our area (we live out of the city on the eastern edge opposite the mountains to the west) but there were many people setting off fireworks here even though they are illegal. My DH and DGD sat on the deck watching the show (excellent view) running occasionally to the front as our nextdoor neighbors usually set off a bunch. I stayed inside holding our sweet puppy as she was shaking. She was better as long as I held her and had the windows closed. They stopped sometime around 1am. My DD was at work and fortunately said there were no children hurt that she knew of. She works night shift at Children's Hospital. I am very patriotic but this is a little ridiculous.

    I am still not feeling too good and feel like I am losing a little ground with increased fatigue, dizziness and body aches. I know it is the well-known cumulative result of the Verzenio. I see my onc the end of the month and have a scan scheduled in August. I also see my PCP in a couple of weeks so I am covered if I can last that long. If it continues to increase I may need to call the nurse. My fear is they will want me to go in for a transfusion. I have done it before but really don't want to do it. It may also be the result of what showed up on my liver hence the scan in August.

    Hope everyone has a wonderful weekend and can stay cool.

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