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Life does not end with a stage IV diagnosis (really!)

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  • divinemrsm
    divinemrsm Member Posts: 6,222
    edited February 2023
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    The saving grace for dh and I was knowing which home projects we could do ourselves and which ones we needed to hire a contractor for. Our kitchen was definitely hired out. When we installed a first floor bathroom-laundry room, we hired a plumber to install the water pipes and we were able to do the rest of it. We picked up skills along the way, at a time when there was no internet, Pinterest, Google or do it yourself blogs. I’d get hardback Better Homes and Gardens how-to books from the library and pour over them. Not everyone is cut out for the do it yourself route and that is perfectly okay. Thankfully we’re done with all the major projects for which I’m grateful! Now it’s just the occasional update.



  • sunshine99
    sunshine99 Member Posts: 2,699
    edited February 2023
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    divine, when we get to our kitchen (if I don't die first, LOL) we will definitely hire at least part of it out.

    The funny thing is that before I married, I was quite handy. I re-wired a thermostat, fixed a faulty plug on a vacuum and other stuff like that. That was before the days of You-Tube videos, so I bought Sunset Magazine how-to books and just dove in. Now that I'm married to Mr. Handyman, I defer most tasks to him. I AM good at demolition, though. Hubby's day job is a banker. I'm glad he's handy. When we were married almost 35 years ago, his dad asked us what we wanted as a wedding present. We both said, "A table saw!" Best gift ever!!!

  • cowgal
    cowgal Member Posts: 625
    edited February 2023
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    Very pretty and oh so much more usable and practical exbrnxgrl!

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 2023
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    image

    I didn’t have that much room in my bathroom as you can see. Yours will be wonderful when done. Definitely worth getting the grab bars too. I’m pleased they were able to do a pretty good match with the marble. Only now with no tub, I can’t confine the dogs for a bath. They’re happy about that 😂😂

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 2023
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    My DH loved baths, would lay in the tub for an hour or more. As his bone Mets progressed he put the bar under the window to help getting up. I asked for the one opposite the toilet to help getting up. Then I had toireplaced with a higher one. What a big help!!!! The 3rd bar isn’t visible in this pic, had it put in just to grab for balance if I’m shaky on my knees.

  • elderberry
    elderberry Member Posts: 1,067
    edited February 2023
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    exbrnxgrl: Sorry about the fall but I am glad it was mostly your pride that got hurt. When we retiled our tub surround we put in one horizontal bar but it was a little too high up to be helpful when having a soak, not that either of us are soakers. After my DH broke his ribs we had a vertical grab bar put at the entrance to the tub and another one with a diagonal bar and another lower horizontal bar (one piece) Lots of things to hang onto and hang the anti-slip mat when not in use.

    Our reno'd basement bathtub is all glass. It is like showering in a fish bowl. It doesn't get used often so cleaning it isn't a major issue.

    I was over the moon when my kitchen got redone. So happy it suits the age of my home and not like some 21st Century condo kitchen got inserted.


  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 2023
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    Ohhhhhh gotta watch those big doggies. I’m always afraid I’ll trip over spookie. I do step on her very long tail occasionally. I had 3 falls last year, now have the help button, wheelchair, ramp and lift on car. Glad nothing more than your pride was injured.

  • sunshine99
    sunshine99 Member Posts: 2,699
    edited February 2023
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    exbrnxgrl, I'm glad you were not injured in your fall. That's scary. It's funny how we define cold, but cold is cold, right?


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited February 2023
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    Whatever defenses I had against the cold from growing up in NYC have been wiped out by over 30 years in CA. It barely hit 50 degrees today and I am very cold!

    https://apple.news/A_OgvkuaQT62FgCqYdHGG1w

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited February 2023
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    I am definitely a cold weather wimp! I’ve spent part of the winter in Napa and part in San Jose. Both places have had colder than normal winters this year. It barely got up to the high 50’s today and some snow is expected in the higher elevations tonight or very early morning. This would include the hills/mountains surrounding both the Napa and Santa Clara Valleys. I am turning into an icicle 🥶

  • nkb
    nkb Member Posts: 1,561
    edited February 2023
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    My daughter sent me pictures of hail in LA!! that is not a thing in LA. supposed to be snow in the mountains there- I bet the grapevine is closed also. Bay Area is cold- I am wearing a down jacket in doors. I am super grateful for my gas fireplace-

    Beautiful pictures of bathrooms!

  • elderberry
    elderberry Member Posts: 1,067
    edited February 2023
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    Snowfall in Qualicum Beach by Thursday morning.


    This was Qualicum Beach on Vancouver Island, which generally gets nicer weather than the Vancouver area. By mid-February we have crocuses, bluebells, trees in bud. No such thing as climate change? Ha ha ha

    -10 C for this weekend and maybe snow here for the lower mainland

    Now where the Hell is my wooly beanie?

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 2023
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    image

    No snow for me.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 2023
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    In the summer the humidity feels like getting smacked with a wet blanket. Right now, it’s probably around 40%. Not bad. I was in Las Vegas many years ago and the news people were freaking out about like 7% humidity.

    My house was built in the late 50s. Flat roof. A/c and the duct work for it, non existent. I have a big wall unit that does a passable job, and a small window unit in my room for night use. I use electric heaters during our 6 weeks of winter. Ceiling fans in every room.

    DH hated it here, but I wouldn’t move back. I hated it there. I don’t do cold well.

  • elderberry
    elderberry Member Posts: 1,067
    edited February 2023
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    I was okay in North Africa with 105 F but it was dry and I was only 26 so the two combined to make it do-able. I lived for awhile in parts of Canada that got really humid and it awful. That and the mosquitoes. I do not miss having my snot freeze behind my scarf that was over my nose, or not enough salt in my tears to stop ice crystals from forming between my lashes. Scott of the Antarctic as a fashion statement. Ha ha

  • nkb
    nkb Member Posts: 1,561
    edited February 2023
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    My favorite climate is Hawaii- 83' day and night with an ocean breeze- paradise.

    The houses here in the Bay Area were built without insulation, no A/C and inefficient heating systems. it worked pretty well most days until about 5 years ago. Grew up in SF and my mom took us to Mexico every winter- I think she had seasonal affective disorder looking back-

    Hope everyone is doing ok during this storm

  • sunshine99
    sunshine99 Member Posts: 2,699
    edited February 2023
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    nkb, I grew up (most of my school years) in Palo Alto and then Woodside. We had a forced air furnace in Woodside, but no AC. Not sure we ever needed it. Mexico must have been nice in the winter. The "good old days" when we'd come back with as dark of a suntan as we could get, right?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited February 2023
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    nkb,

    You are so right! I lived on Oahu for six weeks many years ago, at a Holiday Inn by the airport before the H-1 freeway was completed. Still lovely and we spent quite a bit of time traveling around the island. That was 1979. I’m starting to feel old 😂

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited March 2023
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    I am not sure where to begin. I am not even sure about posting this but some of you are so understanding and I sorely need a bit of that. I have hinted before about my difficulties with belonging so I will start at the beginning. From my earliest memories I have always felt as if I was observing life from the outside. I have moved around the periphery of my world but never felt a part of it. My emotions and thought process were always so different from those around me. I was also painfully shy and introverted and I learned very early on that this was not a good thing. So, I forced myself, in an almost literal sense, to pretend not to be. This elicited positive reactions from those in my life so I continued crafting an exterior persona that was much more acceptable than the shy, scared, introvert that I was and I got quite good at it on the outside. On the inside I waged a constant battle against my true nature because the message was clear; the real me who had difficulty understanding how to belong was to be overcome. I am fairly pragmatic so I clearly understand how much of this helped me navigate life normally even though I was white knuckling it most of the time. I get that. I was able to even embrace the exterior persona and the wonderful experiences it allowed me to have, especially my teaching career , flight attendant, Peace Corps volunteer, etc. and I am grateful for that. But I still never really “got it".

    Enter bc and over 11 years at stage IV. Yes, I have had an easy run compared to so many and yes, I should shut up and be grateful I'm told. However, I am simply worn down from a life of struggling with what comes naturally to most. Physically, I'm being slowly worn down as well. While not crippling, chronic low level pain has taken its toll. I have mild lymphedema in one arm and in one leg (radiation induced from rads to bone met). Not devastating but always there like some low frequency hum. I have lost a good bit of weight for no explicable reason. I either battle low level nausea or become uncomfortably full even after eating very little. My mo thinks it's a form of cachexia but cachexia in itself is very vague and ill defined although stage IV certainly doesn't preclude it, despite my lack of progression. Oh, I forgot horrible dry eyesand glaucoma, likely AI induced (I have been on one AI or another for over 11 years). I can no longer drive at night unless the area is very well lit.Again, between the physical issues and the emotional carnage of not being my true self, I am simply worn out.

    I am trying to reclaim myself; my awkward, introverted, never quite understanding people, never belonging self but no one likes that person. I feel I have no choice however as it's a matter of self preservation. I simply have no emotional bandwidth to be/act as others want or expect. I suspect and have long suspected, that I am on the autism spectrum (as a teacher, I know too much about this) . I have tried expressing this to my family but have been met by no understanding. I know this must be hard for them, I do get that. I am just weird despite outward appearances. I am withdrawing more and more from the world because there seems to be no place for me and no understanding.

    I am not sure what my purpose in writing this is but I needed to get it off my (reconstructed) chest. I also needed to try to articulate it in the hopes that someone can listen without criticism. I am not asking for answers or solutions, just a tiny bit of understanding. And please, please, no ugly pm's as I am too fragile. Thank you and I am so sorry for burdening anyone.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited March 2023
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    Awwww I have no words of wisdom, but am sending you lots of hugs.

  • cowgal
    cowgal Member Posts: 625
    edited March 2023
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    exbrnxgrl - I am so sorry that you are struggling. First off...I accept you as you are. Secondly, would there be any benefit to having yourself tested to see where you fall on the spectrum and maybe get some help from that direction? I do feel like this disease can make even those of us that are probably not on the autism spectrum more recluse. I know my chronic pain and some other side effects effect my social life.

  • nkb
    nkb Member Posts: 1,561
    edited March 2023
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    Exbrnxgrl- this sounds truly exhausting! would be lovely to be around people who celebrate your differences, be it autism spectrum or something else and love you for it, not in spite of it. I certainly think it helped you as a teacher to be sensitive to the many ways kids learn differently and thrive. As far as you having a "relatively easy path" with your cancer- you still have it and pain is pain. It has changed you, and you are not someones punching bag because you are doing well- you are giving back to a community who needs your story also. - sometimes when I feel sorry for myself I think of someone worse off to make myself "buck up", but, not sure this is really healthy or relevant- just another way to diminish my experience?.

    After most interactions with people, I feel like I said the wrong thing and feel uneasy for awhile. although I do enjoy interacting with others also. I do know other people like this- which helps. I think feeling like you don't belong is more depressingly common - even outwardly successful people have this (imposter syndrome?) I wonder if others are judging you as much as you judge yourself.

    I love to see people awkwardly be themselves and not seem harmed by it- as long as they are not being mean to others. when I say a truth that I usually would consider an incompetence in myself and get a positive helpful response it is such a relief.

    Someone gave me a book at the beginning of my cancer diagnosis that recommended going to the belly of the beast- sounded terrifying to me- I asked a psychiatrist friend of mine if I should go to the belly of the beast and she said if you do- don't go alone. put that book right down.

    I don't have answers, I hope you can eat again and find a serenity in your search and decisions. Listening to people's stories helps us all.

  • aprilgirl1
    aprilgirl1 Member Posts: 787
    edited March 2023
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    Exbrxgrl, we are here for you. I appreciate you sharing your reality and it does sound exhausting. As a teacher , I know you know a lot about asd , especially with students. My son is 23 and a high functioning asd ( was considered aspergers prior to the dsmV change to the dx). He also has learned to somewhat "fake" social behavior as a coping mechanism and it is exhausting for him. He also feels somewhat disconnected from the asd community as he "passes" as typical. So he straddles those two worlds. The good news to me is that Neurodiversity is currently being embraced and he feels more accepted by those who know him well.

    Stage 4 MBC is also a spectrum of sorts as there are some that are long time survivors (that give us all hope) and some that sadly, don't survive and that is hard on all of us . You belong here! Cancer is so complex .

    I hope you know you have support here and many, many friends .


  • divinemrsm
    divinemrsm Member Posts: 6,222
    edited March 2023
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    Exbrnxgrl, I’m sorry for what you’re dealing with. Even tho you may think you don’t belong, you do. You have far more positive and admirable qualities than perhaps you realize. Things like being honest, being a hard worker, being intelligent are all qualities I admire in you. I get that society on some levels seems to love the outgoing, gregarious types, but it is okay to not conform ourselves to that mold just because it meets wide acceptance.

    Your weight loss and low level pain sounds concerning, and I’m wondering if you have a regular doctor aside from your mo that you’ve discussed these matters with. Sometimes an oncologist is only thinking about cancer whereas a pcp may look at more of the whole picture to see if other areas need addressed.

    Another thing I think society does is conditions women to behave in certain ways to be acceptable. I certainly received those messages a lot. Don’t make waves, play nicely, get along with others, think of others first, blah blah blah. As I age, I find myself evolving away from what society wants me to be into more of who I truly am. With that, I am sometimes more alone but I’ve learned to accept it. I still think it’s important to have at least a small social circle, so I maintain one but with the realization that it is fluid and ever changing. So I may join a group or activity for a period of time and then move on. I used to stick with things forever but now realize I don’t have to if it’s not in my best interest.

    Like aprilgirl says, you have support here.



  • sunshine99
    sunshine99 Member Posts: 2,699
    edited March 2023
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    Oh, exbrnxgrl, I'm almost in tears over your post. I'm so deeply sorry for the pain you are in. The physical pain is not bad enough to "take something" but it's always there, always reminding you of cancer. I had no idea you had done so many things in your life. You sound so accomplished, and anyone looking at you from the outside would think, "Wow, she has it all together. I wish I could be more like "her". And then you think, "Yeah, but take a look at the inside of me. You'd run screaming to the hills to hide."

    I wish I had that magic words to fix everything. I'm glad you wrote what you did. I hope it helped, even in only in some tiny way, to get it off your (reconstructed) chest. You are right that some people just don't get it. Is it denial on their part? I don't know. Do they think that because we look OK on the outside that we must be OK on the inside? I don't know.

    You haven't burdened anyone here because WE. GET. IT! I sometime wish I didn't "get it" but some days, it all feels like just too much. Your scans are stable? YAY! You should be celebrating! Says WHO? Stable just feels like a stay of execution, not a cure.

    I wish I could drop by with a box of Kleenex. You are loved here. I'm glad you shared.

    (((hugs)))

    Carol

  • nopink2019
    nopink2019 Member Posts: 384
    edited March 2023
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    exbrnxgrl - Anyone who tells you that you don't belong here is flat out WRONG! This diagnosis is hard and never ending. It is not definitive that the most recent scan was good, we all know the next one could be bad. Living with that for 11 yrs weights you down. As we age everything gets harder too. You speak what so many reading here think. Thanks for letting loose to your pals.

  • sf-cakes
    sf-cakes Member Posts: 576
    edited March 2023
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    Thank you for your real post, exbrnxgrl. I love when someone takes a chance to be vulnerable and I sincerely hope no one responds in any kind of negative way to you. Living with MBC is exhausting - emotionally, physically, spiritually - and you've been living with it for many years.

    I like awkward, introverted, and weird folks, personally. While I am comfortable speaking in front of others and have been on stage (many years ago), I prefer in my "off" hours to be mostly quiet at home, reading, gardening, dancing badly in the living room. If I have people over, we're either going to play board games or have serious conversations. (And eating.)

    What a world if we could all be ourselves, without people telling us how we "should" be. I want you to know how much I appreciate you!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited March 2023
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    How do I begin to say thank you? You are all too kind. It was enormously difficult for me to write that post. I am not looking for anyone to help fix or change me so thank you all again for that. I simply want to be understood even though I acknowledge that I am not always easy to understand. Acceptance of who I am would be nice too but I realize that this might not always be possible and I am fully aware of that. I am exhausted from figuring out what others want or expect from me because after 60+ of white knuckling it, I am drained. Thank you all again simply for listening

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
    edited March 2023
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    I come here again to borrow your “ears". I mentioned previously that I have long suspected that I am on the autism spectrum, specifically what used to be referred to as Asperger's. This was purely based on what I learned as a teacher. I finally had the courage, yes it took a lot of courage, to look further into it, albeit just online. I was stunned. What I read was so spot on that it felt like it was specifically written about me. I am truly in shock. Not sure where I will go with this, not sure if it makes me feel better but this bit of affirmation is both upsetting and comforting.

    https://www.aane.org/living-asperger-syndrome-adults/

  • bestbird
    bestbird Member Posts: 232
    edited March 2023
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    exbrnxgrl, first, it is wonderful to see you posting again, even though your recent posts would have been challenging to write. It took considerable courage to share your history. It's evident that you have become adept at compensating for what you may view as shortcomings, and I felt much the same when I was growing up until I received expert help for other issues. Thereafter, I felt better about myself and much happier.

    Interestingly, one of my good friends has Aspergers and I adore him. It's never really seemed to trouble him, and after retiring from a successful career in IT he is perfectly happy on his own constructing model ships, making or fixing clocks, and doing community work.

    I want to echo what someone else mentioned about having yourself checked out due to weight loss. Hopefully it is nothing to be concerned about, but it would be best to be sure. Perhaps a GI doctor may also be of help, as there may be some absorption issues.

    Lastly, perhaps it's time to finally become yourself. If you decide to try it for a while, you may be surprised at how little it may change things!

    Warmly,

    Anne