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

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  • mara51506
    mara51506 Member Posts: 6,284
    edited November 2023
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    Sunshine, fingers crossed here that you can get an app't for the 6 days from now with working equpment.

    Cookie, it was interesting, property manager said to put garbage out since apartment puts out every monday and the city still has their schedule as well, if I need to keep bags lighter, may use the twice a week but try to stick to once a week as much as possible keep bags lighter. Not going to buy another garbage can as they are pricier and I could not keep it inside. Garbage and recycling tonight thru the city so my two recycle bins are going out. Property manager did suggest sliding some money to a neighbour to take out but will try to manage myself for now. I cannot fit a trash compactor but will endeavour to take out trash more often and lighter bags. If worst comes to worst, advertise 10.00 to anyone who wants to take garbage out. That may be a good winter option, we will see.

    Shanagirl, I am sorry your scalp is feeling uncomfortable, in you pocket for that to resolve soon.

    Today, not much happening, tv for money by watching ads, game playing, chores like laundry, need some dusting as well. Have to go through food I have and get canned stuff that will not fit on shelf in living room into my dress and under the bed. My kitchen cupboards have precious little storage and need to get everything together. Also need to stop buying cans of beans etc, I pick it up faster than I can eat it all. I will also stop buying milk, I no longer like it and will eat cheese instead. Eggs and something else on tap this morning, will probably do the 1/4 cup bean, wheat bran to make it like the beefless ground texture as well as little shred cheese chopped up as well. Going to store my beans in my wee little salad spinner in the fridge, the last ones went off quickly and the salad has lasted much longer in the big spinner as liquid goes to the bottom of the spinner, same should hold true for the beans. We will see.

    I did have a weird idea for a compactor. I have an extra chopper that I could use, soften and chop with water anything that cannot go in recycle, put into a mesh bag that has small holes, wash and spin dry and put into my garbage bag, more work but should be OK as these meshbags never used to allow lint or anything else from my small washer, we will see, I will test out sometime today. Should it not work, that is OK too. Should mean less space as well which is good too. We will see. I have a couple of choppers not being used. I can also disinfect any chopper and washer as well so no worry of germs. I would also never consider putting the electric dryer, spin dry and hang. We will see. I will post how it turns out. My mind gets full of ideas like this when it comes to cooking or household stuff.

    hope everyone has a good day and in pockets for everyone who needs me.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Good morning everyone. I actually slept well last night! Amazing. I did sleep in this morning, but am still tired, but that's OK. I actually have NO MORE APPOINTMENTS this week!. Yahoo! Will call my dad later and let him know we'll be there on Sunday after my scan. Need to let my sister know, too.

    I'm looking forward with this week with "nothing" to do.

    Waving hi to everyone. Irish, I thought about your painful scalp and wondered if you were losing your hair. I don't remember if my scalp hurt before I lost my hair during IV chemo years ago. I hope you can get some relief from that.

    Edited to add, my dad just called so we gave him our travel plans and MRI update. Sister is supposed to drive out on Sunday, so we'll all get there that day and the party will begin.

    Love to all,

    Carol

  • mara51506
    mara51506 Member Posts: 6,284
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    Well, just had the small D again, cannot link specifically to one food so cannot really cut anything out, wondering if too much salad or dressing. My stomach feels fine so must be something else. For now, planning immodium before meals and maybe stick to 1/2 immodium before meals daily and take if I have an appointment or going out. I took 2 to start with. It has happened before, glad to have prescription though.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Sorry about the "D", mara. It would be nice if you could put the blame on something so you could avoid that. In the meantime, I hope the Imodium helps.

  • intolight
    intolight Member Posts: 2,247
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    Carol, you sound so much better although I know you are still struggling. But I get it! So happy you can go and visit with your family for Thanksgiving. Sounds like you have a plan. Enjoy!

    Mara, sorry for the "D" and troubles. You are the model of planning.

    I had a rough morning…actually I have not been well since my infusion and shots last Friday. But I am hoping what is happening today is finishing what was started Friday. Posting for Mara's sake, I finally got a shower (out of necessity!) and have dinner planned for tonight so hopefully I will be up to the challenge. I put a laundry load in the washer although my DH had to load the soap and start it. Part of my problem is I hate sitting here looking at a dirty house. My DH would do whatever I need but he is online right now earning money, teaching an online class, so I hate to ask too much since I don't teach online anymore. I'll get there.

    I have PT on Thursday but nothing else until Dec 6 so I too will enjoy a little respite too. Thanksgiving Day will be at my BIL's house so we are good until then. Praying everyone here gets a little rest this week. Chris

  • mara51506
    mara51506 Member Posts: 6,284
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    Sunshine, glad rest of your week is clear and your MRI coming up is good, glad you can see the family as well. Also glad you slept well too.

    I'm feeling little better, got some diaper cream for skin, more Vaseline and complete enzymes to cover more stuff, cannot hurt. Might also take 1/2 immodium to possibly tame it without causing another problem, we will see. Plus side, stomach does not hurt. Just going to have an english muffin buttered and peanut butter. Boring but will avoid anything to fibrous.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    I’m cross posting because my hands are shaking and it’s hard to write, but I wanted to share:

    The GI doc who did the most recent procedure and biopsy called to tell me the cancer has, in fact, spread to my esophagus and lymph nodes in that area. He is going to call my MO and the RO to discuss a treatment plan. He thinks it will probably be IV chemo and radiation. He said if I can’t get enough nutrition/hydration orally I will need a feeding tube. He doesn’t want to put a stent into my esophagus because they can be very uncomfortable and can migrate. I’m still able to eat, so hopefully I can hold off on the feeding tube. Ensure will continue to be my friend.

    I am holding off telling my dad and sister until I have a treatment plan in place.

    This just sucks and I’m so upset. This is not what I wanted to hear, but in one way, it’s good to know that it’s not just something in my head – although the MRI may show something there – haha.

    I’ll share more as I know more.

    Love to all,

    Carol

  • moderators
    moderators Posts: 8,289
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    We're so sorry to hear this, @sunshine99. Hearing that there's been progression is always the thing you're dreading to hear, but it's true. The confirmation that it's not in one's own head provides relief in another respect. We hope you're able to put off the feeding tube as long as possible.

    We're glad you are at least able to share this information here and get some support. Telling family is so difficult and layered. Thinking of you and sending hugs your way. ❤️

  • cookie54
    cookie54 Member Posts: 757
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    Oh Carol I'm so sorry to hear of this it's been such a long process trying to figure out what was going on. So freaking pissed that cancer is the culprit! It's just not fair! I will pray that your able to sustain the way you have been to avoid the feeding tube. Big hugs.

  • eleanora
    eleanora Member Posts: 299
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    @shanagirl

    Thanks for your kind words. So sorry you have rib pain. Would a consult with the RO to see if radiation might help be possible?

    The holidays are difficult even when you're healthy and full of energy. Trying to do it with multiple SEs is more than should be expected. The most important part is seeing your beautiful family. The food can be potluck or takeout.

    In your pocket for the labs and appointments tomorrow.

    @cookie54 , @irishlove , @mkestrel , @sunflowercat@sunshine99 , @Mara, @mel and everyone else who was kind enough to extend sympathy for my rib pain, thank you. You are in my thoughts every day and I am in your pockets when needed. I feel as though I'm in the company of dear friends when I read your posts.

    Eleanor

  • AJ
    AJ Member Posts: 234
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    @sunshine99 crap. I’m so sorry about the progression! Hope you can avoid the feeding tube!

  • weninwi
    weninwi Member Posts: 762
    edited November 2023
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    shanagirl,

    When I was on Verzenio my hair thinned and my scalp became red, painful and itchy especially at the crown of my head. My dermatologist ordered Mometasone Furoate Topical Solution 0.1%. It's a corticosteroid that can be used "once daily" until relief achieved. I would apply several drops of the solution at night to the affected areas and then spread it around and rubbed it in with my fingers. It helped reduce the pain and itching. It is systemically absorbed so I used it only 2-3 x week and didn't have to use it for very long.

  • irishlove
    irishlove Member Posts: 532
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    @sunshine99 Oh no, Carol I am so sorry and upset for you. I hope your MO finds a way to treat this progression and quickly knock it back. Sending prayers for you and lots of love, too.

    Sitting in my favorite chair waiting to just call it a day. My heart aches for those that are hurting.

    Got a call from Cancer center today. The temp. MO wants to see me about the megacolon colitis diagnosis. It was a long week in the hospital and I can't say I feel better. Still have diarrhea, but not sure about taking immodium. I am usually very constipated, courtesy of MS. I'm off Ibrance at least until I finish amoxicillian. I thought it was just a 5 day dosage, but the hospitalist stretched it for another 5 days. DH had his pet scan today. Hoping and praying he still has time before starting chemo. I rescheduled mine in two weeks.

    Like Mel, I have a family member that is not well at all. I want to go home for Christmas, a 1000 miles away. Trying to figure out how to take this worn out body home. I promised, so I'll find a way. We know we can't drive. I no longer drive and it would be too much for DH. Thought about a train but that's super expensive and 24 hours. So if we are healthy enough, guess we will fly. Sure hope that God looks down upon us to be able to make this trip.

    Sending my best wishes to all the sweet gals here and the men who probably lurk.

  • sf-cakes
    sf-cakes Member Posts: 576
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    Sunshine/Carol, I'm so sorry you got this result, you've been dealing with this swallowing issue for such a long time, and to have it confirmed that it's the stupid cancer is so upsetting. I'm really hoping that radiation can be an option, and maybe some other treatment that isn't iv chemo? Although I do know a young woman in my local support group who is getting a great response from chemo, so it may be the right option. Sending you so much love. ❤️

    I'm going to cross post this, too, so no matter which thread you open, you'll see it.

  • weninwi
    weninwi Member Posts: 762
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    Sunshine99,

    So sorry to hear about the progression. I hope radiation and a new treatment knock it back. I've also gotten to know a woman who has had a good response to "old school" IV chemo after failing a clinical trial drug. You'll be in my thoughts and prayers.

  • seeq
    seeq Member Posts: 1,132
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    Oh, Sunshine. You have so much going on right now; I'm so sorry for your worries. Having to wait for the brain MRI was bad enough, and now this. I hope the (very tarnished) silver lining is that having a dx means you and your team can come up with a treatment plan for it, and maybe solve your eating/coughing/sleeping . Sending gentle hugs and hanging out in your pocket while you sort through things.

  • mara51506
    mara51506 Member Posts: 6,284
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    Hospital called, will have the appointment re head bleed and CT results this Thursday. I am not worried yet as I don't feel any different and worrying won't help, if we watch it and more CT in future, fine, if I need something done to treat it, that is fine. If there is no treatment and things go downhill is where I would worry. Decided to allow SIL to come, she is just trying to support me and I think I can use the support.

  • sondraf
    sondraf Member Posts: 1,631
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    oh @sunshine99 that is some crappy news, Im sorry you are looking at this level of progression. You got a pretty good run on Ibrance up until this summer, but bringing in the big guns now to kill this off (so you can continue to enjoy food!) is probably the best approach (assuming that your onc agrees). No one wants to do that but needs must I suppose. Let's hope for a quick, durable response and that you can return to pill-based therapies for maintenance once this is under control. In the meantime, have an enjoyable time with your family this weekend!

  • candy-678
    candy-678 Member Posts: 4,148
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    Sunshine— My thoughts are with you. 💔

  • goldensrbest
    goldensrbest Member Posts: 692
    edited November 2023
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    Sunshine - I’m so sorry they found progression. I’m praying the treatment will be tolerable and wipe out this troublesome spot giving you some relief.
    Irishlove - I hope and pray you can make it to family for Christmas. Prayers for your hubs as well that he doesn’t have to start chemo. Hope you can turn the corner soon from your GI issues and start to feel better.
    Shanagirl, hope you find something to help your scalp discomfort.
    Mara, good idea to take SIL with you to your MRI review.
    Here for pocket duty. Sending healing vibes to all.

  • keris113
    keris113 Member Posts: 45
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    Sunshine- I am so sorry to hear about the progression. I hope that whatever the treatment plan is is that it knocks out the cancer and provides you some relief and ability to eat! That is a lot to deal with.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Thank you, sondraf, candy-678, goldensrbest, keris113, seeq, weninwi, sf-cakes and everyone who has commented.

    Fortunately, I can still eat and drink. I think the GI doc was concerned that radiation to my esophagus might make it harder to swallow. He doesn’t want to put a stent in. He said they’re uncomfortable and can migrate. Yikes. Even if I’m reduced to Ensure with protein powder that sounds better than a stent. I hopefully will hear from my MO today so that I have a plan and can share it with my family.

    Mara, thinking of you and hoping for a good outcome. That nagging worry seems to be always there, doesn’t it?

    I need to update my blog, but not sure where to start. I’m thinking of a title like, “Disappointment” or something like that. I can’t post this on social media yet until I tell my family.

    Waving hi to mel, mae, irish, shanagirl and anyone I’ve missed.

    Irish, I’m sorry for all the crap you’re dealing with, too. (Pun intended?) I’m looking forward to going to Utah for Christmas. DH can drive. I just don’t know if my dad will want/be able to make the trip from Seattle. Plus, my sister will be out of rooms at her house. We shall see.

    Love to all,

    Carol

  • sunshine99
    sunshine99 Member Posts: 2,699
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    seeq, thank you for the words "silver lining." That might just be the perfect title for my next blog post. I was thinking about "Disappointment," but I like "Silver Lining" or "Silver Linings" better!

  • micmel
    micmel Member Posts: 9,983
    edited November 2023
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    I’ve been reading along. I’m so sorry sunshine you’re dealing with this. Makes my heart hurt. I get discouraged knowing we all battle so hard each day for our life. To keep living and loving our world and those in it. Somedays the load is just too heavy to carry. The knowing. The pain. The worry. Our suffering. I’m so sorry we all have been dealt this hand in life. Think of how many of us there are. We are just walking around knowing we have cancer. Slowly dying wether it be from progression, or the brutal treatments we endure. I will be on ibrance 8 years in January and it’s slowly killing me. Slowly. But surely.

    Yesterday , Theo got loose again. He’s so small he just slips out of the smallest spaces. I was alone. DH was out of town for work again. I was so scared. Luckily my sweet neighbors were outside, they helped me. It was so impossible to get him. We had three people trying. He ran into the street at one point. When he got back in the grass I literally dove like a football receiver and tackled Theo in my arms like a football. My neighbor took Theo for me so I could get up. Today I cannot move my spine, I’m in agony with every turn of movement. I refused to let Theo go. I was determined to catch him. I did. I’m paying the price. But I did it. I had no choice. I am just realizing that I can’t really do well alone. I’ve fallen three times this month. The neuropathy is worsening. But yet I’m stable as stable gets. It boggles my mind. sorry I rambled on so long. Love to all. You’re all not alone.

  • intolight
    intolight Member Posts: 2,247
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    Mel, you so eloquently expressed what we are all going through. The pain, the frustration, and the discouragement that comes with doing what should be simple things. Then when we do them, we are knocked down. Your expression of determination to run after your beloved Theo is priceless. Some days we feel good enough to do those simple things, then other days we sit in tears because we can't even keep our kitchens clean. We each care about the basic things that others take for granted and cringe when the unexpected falls place us in jeopardy. The care we feel here is our life-preserver on those days when all we want to do is curl up in a dark place. I thank everyone here for their presence. Sometimes it is what I need most.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Oh, mel… I'm so sorry that rascal Theo got loose again and you hurt yourself tackling him. I hope you didn't injure yourself too badly.

    You and the others here totally understand what this life is like. Constant worry - not only about ourselves, but about the others with this damned disease and the family members who have to watch us suffer. It toally sucks!

    I saw my MO this am via video. The jury is out on the HR status, but she's going to start me on Faslodex (sp?) and I will see the RO on Friday. She also wants to get a PET scan, which I've never had. Regular scans on the 28th, MRI next Sunday, and I'll see my MO on the 29th.

    Will tell my dad and sister next week when we're together for Thanksgiving. I'm hoping I can present the info in a "positive" light.

    I'm feeling better than I did earlier.

    Love and hugs to each one of you!

    Carol

  • illimae
    illimae Member Posts: 5,657
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    @sunshine99 Im sorry to hear about the progression and do hope you can avoid a feeding tube. Ensure made it possible for me to avoid one after the complication from brain surgery that left me unable to eat for about 7 months. I had a lot of extra weight too, that helped. If I did need a tube, my plan was to have cake in my mouth for taste while puréed kale was going in the tube.

    Hi to everyone. Not much going on, just a haircut and dentist appointment later this week and prepping for turkey day, just DH and I this year.

  • goldensrbest
    goldensrbest Member Posts: 692
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    Mel - it sounds like little Theo has the bolt and run gene. Best to take him out on a leash. It’s more important that you don’t hurt yourself. What if your neighbors hadn’t been outside? In addition to a leash, there are those contraptions that screw into the ground and have long leads attached. Theo can have a big circumference to move around in. Safety first dear sister!

  • bellelove70
    bellelove70 Member Posts: 38
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    Sunshine- you have been struggling with the eating issues for so long. I am so sorry to hear it is caused by the progression of cancer. With all the tests coming up, the right decision will be made on how to kick it back. I will be in your pocket along the way. It will be great to see your family at Thanksgiving.

    Irishlove- I don't know how you can deal with everything that has been handed to you. I do recognize how strong you are and I do hope you will be able to see your family at Christmas.

    Mel- Theo is a little rascal and fast! I can understand how much pain you must be in after the tackle. Been there, done that with Belle. Take care.

    We are all faced with struggles now that we are on the cancer train that left the station. It won't let us off but I hope it will slow down to allow all of us to take a breather.

    Debbie

  • cookie54
    cookie54 Member Posts: 757
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    Typing through tears thinking of all the struggles but the compassion and support from this group. You are all amazing pillars of strength and resilience.

    Sending healing thoughts for all. 💙