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

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  • sondraf
    sondraf Member Posts: 1,628
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    emac - I was wondering how you were doing, Im sorry to see you were also faced with the spreadsheet brigade recently and some very uncomfortable issues with eating. Seems like we both started getting whacked by this disease at the same time, with all the pain and frustration and worry about losing treatment lines so rapidly. I hope you feel (a lot!) better soon, especially now that you are at home, and can maybe get out into your garden a bit if possible.

    Nothing new here, gaining stamina by the day although sleeping is absolutely impossible until almost 4 am for whatever reason - just cannot find a decent position. Something is pushing on a nerve in my hip/back and laying on my back (which is the only position I can) makes it antsy. I had been complaining about muscle pains and the like and was suggested to 'adjust my pain med schedule' like I hadn't thought of that, but I did realise this afternoon hey wait! TENS machine! Oh sweet relief was mine in 30 seconds and without more pills. I also got down some sewing project and I ate pie this morning (with ice cream even!) for breakfast so I think Hospital Hangover is finally starting to pass.

    Have a great weekend everyone!

  • malleemiss251
    malleemiss251 Member Posts: 411
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    Hi all - in your pockets for support.

    @micmel I hope they took film of the graduation. You must have been so proud and what a pity to miss the family. I am sure they knew you were with them in spirit.

    @shanagirl Miss fooms is again on my lap - she rules the household. My other kitty (Fizz) - even though much bigger and younger than fooms knows her place and shows respect to the aged one.

    @mara51506 I am liking your approach to housework. Sometimes it can be a bore. I use woodshavings for my cat litter - much lighter and easier to clean.

    @emac877 I am glad you are back from hospital and hope the eating issues resolve soon.

    @sondraf I am glad the "hospital hangover" seems to be passing and very glad you managed to resolve pain issue.

  • shanagirl
    shanagirl Member Posts: 380
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    @emac877 I’m feeling you and your esphogal. Issues. Very scary. The hospitals are all the same nowadays. I hate every time I have to go for my Onc visits and injections. Other than my treatment team, everyone else so unfeeling regimented and policy oriented. The techs as so ignorant and just are there for a career paycheck and are all inexperienced and fresh out of school.

    @micmel I’m so sorry you missed your son’s graduation. Cancer sucks and keeps us from being able to just enjoy life’s simple joys with family. I know you feel like 84 though you are only 54. But devastating illnesses cause us to feel this way even when we are so young. 54 is young Mel, but don’t be hard on yourself. I was a young 54 when I had my hemorrhagic stroke. Life has been one health issue after another since then. But now I am Old and feel like 95, though Im only 75😂…I’m just grateful to still be alive, after a stroke, 2 knee replacements, then cancer all in the same decade..😉🩵. Sending you gentle hugs and peaceful feelings, and good wishes.

  • micmel
    micmel Member Posts: 9,970
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    Shana~Thank you for your sweet words. I hate cancer with a passion. My sister also has cancer lymphoma, they say misery loves company. But we talk a lot about how cancer has robbed our lives of just basic things really. I know 54 is young. That’s a point of depression to me because I would have been able to live decades longer perhaps. Now I live year to year. And scan to scan. When a birthday comes, I add another one in my survival category. They are both sad and happy days. Happy because Ive lived another year, and sad because I’ve struggled another year and the life I’m living is some half assed cloned life that went awry. I am grieving my mother’s death. It has just sucked already 2024. I realize I have nothing to look forward to each day. Thank god for my family, I fight to love and be with them. ( and little Theo).
    have a good evening. Much love to all.

  • seeq
    seeq Member Posts: 1,128
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    I'm so behind with everyone. I was traveling for two weeks, pretending I didn't have cancer. It was a great trip, and I got to meet KBL! We figured out we have a lot in common and could have talked for hours, instead of a too-brief lunch. It took me days to catch up reading.

    Mel - congratulations on your son's graduation you must be so proud.

    SondraF and emac - glad to know you are both home from the hospital. SondraF- I didn't realize a tens machine could provide such quick loss pain relief. That's great it's helping you get some rest. Emac, I hope your eating improves quickly.

    I can't remember who had the blue fascinator, but I loved it! And all the pet pictures!

    I know there are more comments I wanted to make, but they've escaped me. So many are struggling. I'll be hanging around in pockets where needed. I'll have some fresh-baked snickerdoodles with me.

    I'm traveling again tomorrow, but not for anything fun. My brother passed away three short weeks after he went to the ER for pain. Even though I'm the youngest of 7, I thought I'd be the first to go. All the others were still healthy when I was dx'd. Now one is gone, and another is in a convalescent center with Alzheimer's. 😪

  • irishlove
    irishlove Member Posts: 527
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    Good early morning sweet people. I caught up on the different posts and about 5 threads I follow. It's too much to absorb if I tried other threads. This is my comfort zone. Hope that everyone finds themselves in a better place tomorrow then yesterday. I know hospitals want to treat you and get you out the door. I guess our hospital got in trouble with Medicare for discharging too soon, because an administrator comes into the room and asks if you feel you are being discharged too soon. Gives me chance to complain about 4 sticks to get an IV and can't they please bring that magic vein finder sooner.

    GI issues still with me. Yesterday was more painful. GI Nurse Prac. wanted me to head to hospital to get another CT scan to see if I truly still have diverticultis infection. I said I'd think about it and give it more time, as she did not want to prescribe more antibiotics without the scan. Today was a good day, so out to the garden to transplant flowers DH bought home. Then I painted my chest, kept it very light beige as that was the color my DGF had started with. I'm guessing her ran out of paint, and being poor, he couldn't afford to buy more. It had two different colors on it, and now it looks so good. Sentimental value, but does help with extra blankets and pillow storage.

    In pockets for all your scans and needs.

  • emac877
    emac877 Member Posts: 688
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    Thank you all for the support. I think today will be a better day.

    Mara your posts about food give me some great ideas, especially now while I'm sticking to softer foods.

    Shanagirl and Sunshine99 I know you both have struggled with the esophagus and eating thing too. Today feels a little better and I am holding down fluids.

    SondraF I agree, it seems we both have had a rough go of it at the same time. I hope we are both on the up swing to recovery. I never thought to try a tens unit. That's a good idea.

    SF-Cakes I am going to have a frank discussion with the RO. I don't have an appointment set up yet but see the PA for my MO on Monday.

    Micmel congrats on your son's graduation. I'm sorry to hear you couldn't travel to be there, I know you were there in your heart. You're right, nursing school is no joke but once you find your niche it's a solid career. I was a nurse until last summer and while it's a hard job, I loved what I did.

    I am in hopes Xeloda works for me and I get some mileage out of it. One thing I'm going to ask about is an updated biopsy. I haven't had one since 2020 and I would like to know that I still have the same subtype and that we are chasing the correct monster. I know this cancer mutates. Maybe I'm just being paranoid at this point. I'll see what they say.

  • micmel
    micmel Member Posts: 9,970
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    SeeQ ~ I’m sorry about your brother. It’s never easy to loose someone, I’m learning that as well. Sending love and hugs…..

  • sondraf
    sondraf Member Posts: 1,628
    edited May 5
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    Seeq and emac - You can't use the TENS near/on a tumor area (so I dont put the pads directly on my hip tumor or general location), but for that sub-surface level nerve-y type pain or muscle ache as a side effect in other areas it works great. I had to get clearance from pain management who checked my scans before I could get one, but I cannot believe I forgot about it for five or six weeks when it would have helped lower/eliminate some of the daily pain load.

    irishlove - we have the opposite problem here, sometimes it feels impossible to get OUT of the hospital. They were perfectly happy letting me stay on another day, and if I wanted to stay on until Wednesday which was the original discharge date then sure! There aren't enough beds in any of the hospitals and yet you can't leave easily when you are pretty much good to go. Last summer I was on a ward with a woman who had gone to another hospital for something rather simple it seemed and somehow it turned into a 7 week stay and then she was transferred to the hospital I was at. She was completely deconditioned at that point and had more issues to deal with and the first still hadn't been resolved. It was really bizarre but honestly nothing surprises me anymore with some of the decision-making and communication here.

    Having a lazy day here, may have done too much yesterday and now Im groggy and tired. Maybe a nap and a few more liters of water would be a good idea.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    seeq, I'm so sorry for the loss of your brother!

    emac, I'm glad you're keeping down liquids. At one point, it took me two days to get through a 14(?) ounce bottle of Gatorade. I could drink Ensure, but some of the other protein drinks were too sweet and made me sick. Super thinned down instant mashed potatoes were good. I hope you continue to improve. My weight is coming back up but am still about 15 pounds below where I started. (I'm 5'3 and am now 119 pounds, which is acceptable.)

  • mara51506
    mara51506 Member Posts: 6,246
    edited May 5
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    Emac, I hope this morning finds feeling at least a bit or a lot better being at home. In your pocket waiting for next steps for you and lending love and support.

    I fell asleep last night and dozed lightly all night, did not go to bed but stretched out on sofa and ottoman, I could hear youtube but could not be bothered going to my bed. I feel pretty good today which will consist mostly of light housework, vacuum, possible foot mopping with some cleaner, could turn that into an exercise opportunity, do a good footmop across the room after sweep and vacuum, use my mop for a dry mop after. DB is hopefully coming today to clear stuff off back porch, already cleared with him I could also put out extra garbage bag as they are going to the dump. I am emailing the property manager that my stuff will be taken today, couple items must have been taken by other residents which is fine, better that than the dump, the ottoman was cute but upgraded to another storage ottoman, cats are enjoying it. Clearing out the hideyhole in one of my shelf cubbies. My plans will happen slowly and surely, no rush, floor is clear. One she

    Gave DB 25.00 for coming out so it has all been picked up for the dump, he had some concern about litter but assured it was triple bagged and the other was pretty light. He asked why I don't dump at the back so told him about the almost falling on the uneven ground. The money just shows my appreciation for what he did. I will do the same for SIL when she comes next week.

    I was starving and have not cleaned my dishes that were soaking yet, will have to by supper. Order a mcdouble with pickles removed but extra onions and lettuce with some bacon added, no fries or pop, the pop I had yesterday at noon was the likely culprit of the sleeping on couch, that is OK. I also bought big mac condiments, 5 of them so that I would have the option to add big mac flavour, figure they will stay good in the fridge for a bit. Still unsure what time of day a glass of chocolate milk should fit in, perhaps if I have an earlier breakfast as if I do it too late, not hungry for dinner. Still planning something with naan and a garlic bean spread, put in the breville and melt some cheese, put a sprinkle of the sour cream underneath the cheese and just warm until the cheese melts, sometimes I like to use the breville still though microwave has been handy in past for meals.

  • cookie54
    cookie54 Member Posts: 741
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    seeq Sincere condolences for the loss of your brother, may he rest in peace. Glad you got to meet up with KBL, how nice!

    emac. Ugh sorry you had another hospital stay, it just stinks. Saw your post about Xeloda on that thread, I too use Aquaphor , Voltaren (sometimes) and definitely saw a change in my HFS with low folic acid diet. Over time I have tried it all and that seems to work for me . Agree with the updated biopsy to be sure the correct monster is being sought. Makes perfect sense to me and I hope your MO agrees.

    Irish Glad you had a better day yesterday and the chest paint color looks good.

  • goldensrbest
    goldensrbest Member Posts: 685
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    emac - ugh - another hospital stay. Hope you can finally keep things down and proceed to some simple solids.

    SeeQ - my deepest condolences on the loss of your brother. Hugs to you and your family.

    It’s a lovely sunny day here. Went to church, then the oldest grandson’s ⚾️ game. Home to do a few things and then we are going out to dinner for my hubs b-day which is tomorrow. But other GS has a ⚾️game tomorrow which ends around 7:30 and I don’t like going out to eat so late. So today it is.

    Wishing all of you a peaceful conclusion to the weekend🥰

  • irishlove
    irishlove Member Posts: 527
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    Good early morning everyone. @seeq I am so very sorry for the loss of your brother. May memories hold you close to him. Alzheimers disease harms the whole family, too. I hope your sibling has good days and meds in trials make it to pharmacies (ASAP) to at least slow it down.

    @sondraf That is an awful situation for that poor soul. I know in as little as two weeks you start losing condition, muscle mass, etc. I think that's why it's imperative to have an advocate and a darn good doctor monitoring treatments.

    @sunshine99 Sure hope it's just aging that's creating pain in your hip. In your pocket and all who have physical and other needs.

    Finished the chest with black permanent marker on hinges. DGD used purple color to fill in the info stamped on the side of one of the boards. It says Ginn and Co., with address. They were publishers of school boxes starting in 1865! I guess DGD was right when she said it looks like an antique. Small things like this make me smile.

  • shanagirl
    shanagirl Member Posts: 380
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    Good Morning Monday, My Lady friends in Mel’s Livingroom. I’m still in bed with my IPad and 2nd cup of coffee. Ugh it’s been a really tough week since I got my 2 Fasoldex Injections and the 1 Xgeva injections. I. Feel not only wiped out but so much pain in my ribs and spine and lower back….I don’t know whether the bone pain is progression or the SE from the injections. I forgot to mention all this at my follow-up that was last Monday. I have scans coming up in a week from Thursday. I’m so bone achy, weak and tired and I hate Stage IV Cancer. It totally sucks. I know I should be more confident and upbeat, since MY STAGE IV is just in my bones, but now all I think is progression, what’s next after being on Verzenio, Fasoldex & Xgeva, since January 2023 and stable since. But for how long between scans? When I feel like this I get negative, isolate from friends and family, in this unmotivated state.,and don’t even feel like facing another boring do nothing cancer day because I’m so tired, and in achy bone pain. Thanks for listening. 💙

  • micmel
    micmel Member Posts: 9,970
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    Shana~ I feel that sucky achey bone pain. A lot. As I am bone only as well. I’ve been bone only for 8.5 years now. It’s hasn’t been a picnic by any means, I’m constantly exhausted and no matter how much i sleep, I still feel rung out. I’ve been on ibrance for those 8.5 years as well so stabilizing for long periods of time is very possible. I worry about progression as well. I scan once a year now. I do blood work and xgeva. I’m like a non clown in a clown costume, I’ve been told I am stable, so people expect me to look like that clown in costume, but just because I look like a clown doesn’t mean I am one. Looks can be deceiving. I know it all sucks so badly. Life is so hard already. Thrown into clown world. And dealing with other clowns (medical doctors, therapists) that don’t have what we have but act like they understand what we are going through. They don’t , they are all a bunch of clowns who we are stuck with for a lifetime now. I can hear the music in my head. The clown car music. I know they mean well. But they really don’t understand anything we go through. But they can dictate what we have to do because they are the boss. I know they say we are. But we aren’t if we don’t comply they won’t treat us. It’s all shit stew.

  • shanagirl
    shanagirl Member Posts: 380
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    @micmel Yes exactly. I feel like a made up clown also because if I don’t put makeup on I feel almost naked, but when I do get made up, for some rare random invite or family or friends’ get together, I get “how do you feel, you look amazing”. So then if they they want to believe that i feel amazing because they want me to, I just say “I’m fine.” My ex daughter in law sent me an invitation to my grandaughter’s graduation party. I responded I would be there, but now more than ever I’m having second thoughts because I feel like crap, and don’t want to be hanging out with her family who will be there. I think I will just send a gift and not go.

  • threetree
    threetree Member Posts: 1,461
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    Shanagirl - I so relate! I'm so so sick of, and from, Faslodex and Verzenio I can't stand it; all the musculoskeletal aches and pains, along with the fatigue that never stop, but the alternative is worse of course, as we all know. I had my Zometa infusion last Friday, and I even got it with fluids this time, as some have said it did the trick re side effects. Not so much for me, unfortunately. My side effects aren't quite as bad this time, but I definitely have them. So many have said they only had troubles with their first infusion, but this was my 3rd. Each time I get it, I say never again, but then I bite the bullet and do it.

    I feel so badly for you, Shana. Feel better soon,- I'm pulling for you!

  • mkestrel
    mkestrel Member Posts: 167
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    Okay I'm mad. So after initially suffering through work to keep my insurance, I finally applied for Social security disability and was approved as of December 30, 2022. For whatever nonsensical reason, they do not actually start payments until 6 months later. Then there is a 24 month wait to be on Medicare insurance instead of my husband's work expensive high deductible insurance. Well I just found out they start counting the two years from the date they finally started paying SSD, so eligible for Medicare in June 2025. So, I will have to be on my husband's insurance and pay the max out of pocket again in 2025. That makes the wait 3 years, the average survival time for metastatic cancer. The good old government that spends billions on pointless wars is hoping I die first before they have to help. This is unethical! I am mad but not surprised. Also on the way out their disabled button for the door didn't work. So typical.

    I think I'm in some nightmare and can't wake up. I have PET CT this week and then all the shots Faslodex, goserelin next week. I try to make myself think about the reasons I kept trying at all, what I live for. I told husband about the insurance and he texted back one day at a time! Our motto lately.

    A hug to all trying to deal with today and hope you have something or someone in it to enjoy existing for. Here are my grass seed thieves.

  • goldensrbest
    goldensrbest Member Posts: 685
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    mkestrel - I’m very sorry about the 💩show from the government. So many things don’t make sense anymore. Those grass thieves look pretty chunky😂.

  • micmel
    micmel Member Posts: 9,970
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    like I said. It’s all shit stew!!!! You just can win. You have to wait, even though you’re terribly ill. I hadn’t realized all of the waiting involved with getting Medicare. The entire health system is crappie. Living like we have to live is also crappy.

  • tougholdcrow
    tougholdcrow Member Posts: 98
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    @mkestrel You could say that the entire situation is for the birds!

  • threetree
    threetree Member Posts: 1,461
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    Mkestrel - I am just so very sorry about your situation with Medicare. I would have thought that when you qualify for disability, you qualify for Medicare at the same time. I think it might have to do with the fact that so many don't stay "disabled" and go back to work, and they want to see more of a long term situation before they authorize the Medicare. Have you spoken to a Soc Sec Disability lawyer at all?

    While the birds may be a real pain in the rear for you, eating up all that grass seed, it's a great photo!

  • intolight
    intolight Member Posts: 2,240
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    @mkestrel I don't totally understand your post, so forgive me it I am off here. There is Medicare help out there (if you can find it.) You might see if the people at Boomer Benefits can help you over the phone or email (it is free.) I was on ssdi for two years, then I switched immediately over to Medicare when I turned 65. I know there was not a two-year waiting period! Do you qualify for Medicare by age? Is that why the wait? Can you go to a Medicare facility and talk to someone? They really helped me. I got better help there than on the phone. It was worth the hassle.

    Gotta run. Praying for a solution.

  • shanagirl
    shanagirl Member Posts: 380
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    @mkestrel Hi. It sucks to go through all this bullshit cancer and the have SSDI bullshit to add to it all. I believe @intolight Is correct. It’s much better to go in and talk to someone rather than dealing with the red tape bureaucracy on the phone. DH and I got further with them by going in to speak with someone. I hope you have a calm restful evening.🩵

  • mkestrel
    mkestrel Member Posts: 167
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    Intolight it's ok, it makes absolutely no sense to me at all but apparently that's their rule. I'm supposed to qualify due to disability not by age. I'll be 50 this year. They gave me number to some Medicare advisors.

  • cookie54
    cookie54 Member Posts: 741
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    mkesterel Yep exactly true I turned 58 in January and been on disability since 1/2022 and qualify for MC 7/1/24 finally!!! My DH and I have been on my Cobra for a fat price of 1,680 per month. The system stinks and I worked since I was a young teen. I also try to take it all one day at a time or I will lose my s**t

    Shanagirl & Mel I can totally identify with all those thoughts. Somedays I feel like I live in the world of limbo but the I tell myself I should be grateful. The whole Stage IV is a total mind screw for sure and I'm "only" coming up on year 2 being Stage IV. I get the same but you look so good and in my head I'm saying yep smoke and mirrors here…..

    Blessed to have all of you❣️

  • illimae
    illimae Member Posts: 5,644
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    @mkestrel You’re right, the 2 year wait is because you’re under 65, I had the same wait when I went on SSDI at 43. I’m sorry you found out after the fact, not a nice surprise.

  • candy-678
    candy-678 Member Posts: 4,141
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    Social Security Disability issue- I agree with illimae. This is the rules. I went on Disability in June 2019 at the age of 48. Had to wait 6 months for 1st check. Then had to find my own insurance for 2 years- I did COBRA from my previous job- until I qualified for Medicare. It is stupid, but that is the rules. There has been, what do you call them, Bills? in Congress to change this for MBC due to our terminal status, but it has not passed into Law yet. Congress is a joke. Sorry mkestrel but that is the facts.

    "Clown" issue- Mel and shanagirl- It is kind of nice to hear you all discuss this. I too "look" good. But that is not how I feel. I have to nap every afternoon— I try to keep naps to less than an hour. It is almost unavoidable. It is like out of my control. I sit down, and, bam, I am asleep. At the age of 53!!!! I don't feel like working, or socializing, or doing much more than just managing my own house. But, as I have posted before, my "friends"/circle thinks I over dramatize it. That I want to dwell in my illness. That I am stable and should just live. No one but you all truly understand.

  • threetree
    threetree Member Posts: 1,461
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    I had no idea about the 2 years to qualify for Medicare on disability, if you are under 65. I work with a lot of people on Medicare and disability and had not known this. Good info, and very sorry for those of you who've had to experience this. It does not seem right at all. Most of the people I work with are over 65 or they've been on disability for quite some time, so I think that's why I missed this critical piece of information. Mkestrel - I hope you can manage this is some way - I can totally understand why you are so angry and upset!