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

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2019

    great flow chart Mel! I love a good flow chart and I really like the recommendations in the right hand box.


    Booboo and moomola I love red wine too! I used to drink maybe a glass every night or every other night too, but I have cut down quite a bit. I think I feel much better without it. It definitely causes hot flashes and some sleep dysregulation which is never fun and already a major issue, so I try not to make it worse if I can. But yes a yummy glass of red is so good!

    So I had an incredible night last night. Still processing all of it....I didn’t get a ton of sleep and had to work today and now my adorable 3.75 year old nephew is sleeping over in my bed 😍😍😍 so hoping I can fall asleep soon tonight and get some energy back in the tank.

    Without giving too much TMI about it all, I can simply say that despite being in an antidepressant, an AI, plus lupron (which is used to medically castrate pedophiles!), plus having a deformed boob...I still was able to have intimacy and romance!! 🙌🏽🙌🏽🙌🏽🙌🏽🔥🔥🔥🔥🔥

    Amazing!!!! It’s a miracle!!!!!!







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  • runor
    runor Member Posts: 1,798
    edited September 2019

    I am pretty sure that at one point MarianElizabeth was blogging, there was a link to her blog in her tag line. I do not know if she is still adding to that blog or if it is still available to view.

    I get the feeling that she is tired. Very tired. Is wanting to narrow down and simplify life. She was going through the site and removing her posts. She was feeling spread too thin, too many pokers in the fire. I suspect she might feel the pressure of having to post on a thread of her own. That is just a guess though.

    She can be found in the thread, 'Canadians in British Columbia' if any of you want to pop in and say you're thinking of her and hope she feels free to pop back over when her energy allows.


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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited September 2019

    Philly, Go girl!! Glad it was a wonderful evening!

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited September 2019

    runor Thanks for telling us your in put and where she posts. I'll say Hi to her there.

    Philly you post made me smile. There is life for us.

    My husband died nine years ago. I decided he was/ is my life story. Forty years. A lifetime with one good man. I'm content to keep that story in regard to romance. But, it may just be that it sounds exhausting to date anyone, too much work to develop and thrive in a relationship. That's my story and I'm sticking to it. LOL

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    Grannax~Nine years ago seems like a lifetime now to me You’re one strong amazing woman. I also realize my DH is my one and done. Should god forbid something happens to him. I am not interested in anything else I’m just content to wait to be with him. It’s all I would have ever wanted. He is the one I mesh with, my best friend, so I get, I love the story you’re sticking too!

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited September 2019

    Mae and Jens fabulous news!!!

    Gumdoctor, continued hopes that everything heals, settles and the new treatments work!

    Good to know about MarianElizabeth.

    So hard moving. Our closets are all consolidated and I simply have to donate old clothes. So many memories!!!

    Absolutely horrible trip for medications Friday. Because we have shifted East to West, West insurance DID NOT APPROVE MY MEDICATIONS. Yep. And of course, it was after 4:30 east coast, so no one to call. Poor hubby got the short end of the stick as I literally screamed at him and walked out the door. I have never been so shaken in my life. Mind you, both East and West are under the same overall umbrella. Just inexcusable. He finally convinced them that East insurance had approved all visits and that they should go ahead with the medications. I was a mess the rest of the day and had a horrible time getting to sleep. It all starts over on Tuesday, when we change insurance companies. Intellectually I know that a couple days should not make a difference, but I still cannot breathe well, and the thought of going without medications while tumors are active was so threatening I was literally shaking. Just a horrible experience.
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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited September 2019

    soccermom so sorry that happened to you. Mix ups with medicine doctors soc sec scans it just pushes us over the edge. I hope you can relax enough to get some sleep.

    Ladies a few days ago it was posted that Good morning America wanted some MBC ladies to be a guest (audience) at their show. Oct 1. I’ll be in NY at that time to see my Mom and then off to see my grandsons homecoming football game in PA Friday. Anyway they contacted me this morning so I’ll be waving at all of us on our thread. ABC 7-9a.m

    Tanya

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    that’s incredible!!! You go Tanya I’ll be looking for you! movingsoccermom~ I’m so sorry that happened to you. Thank goodness DH was a great advocate for you Sometimes it’s just not acceptable the way things are done. Please rest up as much as possible. I’m thinking of you!
    muddling~ Iam thinking of you as well our dear sister...

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    image

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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2019

    I HATE THIS CANCER. I hate the looks of pity. I hate the whispered "How are you doing". I hate the " You still look good". I miss the old me. I miss being the strong, independent, Candy. Always busy with life. Always doing. I saw an old friend tonight. He barely spoke. I make him uncomfortable now. I miss my friend. So many good memories. All gone now. It is like I am already dead. I want to scream " I am still me". Having this cancer is a slow and agonizing death. I cannot do the things I used to do. I cannot plan for the future. I am still me, but not me. This life is now so lonely.

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019
    Candy~I know it totally implodes who you are. I’ve lost many friends with this diagnosis. There are so many things to feel when we are fighting this beast...never knowing any certainties. I’m sorry that your friend acted that way. Makes. No sense.. I had someone walk. The other way in the grocery store. I know the looks. I’m so sorry sweet friend. Hugging you! ~M~
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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited September 2019

    Thanks Micmel.

    I am so sorry Candy. I have never understood folks like that. I am so very sad that a friend would do that to you. Hopefully you will be one of the lucky ones for whom this becomes a chronic condition.....and in 10 years you can poke him and say yo....still here....still me. Thinking of you.

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    good morning ! Mae? hello movingsoccermom, and candy ! Hope everyone has a pain free day. Have a palliative care appointment later this morning ugh! I just dislike appointments I step on the scale and holy moly ! Disappointed !

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  • booboo1
    booboo1 Member Posts: 1,159
    edited September 2019

    Dear Tanya,

    I will tape the show so I don’t miss any part of it. I can't wait to see you on TV! I know you will represent us well and show the world the hidden parts (pain, anxiety, etc.) that people need to understand about this disease. Thank you

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  • booboo1
    booboo1 Member Posts: 1,159
    edited September 2019

    Dear SoccerMom,

    I am about to go through exactly what you are with insurance. I just found out that, as of January 1st, I will be switched over to Medicare (I’m only 59). I have heard the stories of denial from these government programs, and am so scared about what this change will mean for me. But I’m going to trust in God, and see where it goes. Who knows? Maybe I’ll be surprised with the outcome.

    Anyway, I feel your pain and anxiety, and hope things settle down soon. I moved from PA to FL in April, so I can relate to all you are experiencing...new home, new doctors, new insurance, etc. Hang in there. It will get better!
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  • booboo1
    booboo1 Member Posts: 1,159
    edited September 2019

    Mel,

    I love the cartoon you posted. I shared it with hubby, and we agree this is so often true

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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2019

    Morning all.

    Dreamed about the past last night. About my job before the cancer. I could see the building so clearly, the hallways, the office where I worked. That building gone now. Torn down. And I am no longer working with that company-- no longer working period. When I woke this morning I just laid there thinking about the past. How I wish I could get it back. I know it was not perfect-- there were hard times, sure. But I was healthy. I was working. I was living.

    Damn. This is hard.

    Micmel- What do you do at your Palliative Care appointments? We don't have that where I am. When first diagnosed, we had a Palliative Care doc on staff and I saw him for 2 visits. But he moved and the clinic didn't replace him. So now no Palliative Care services.

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019
    Candy~She is my medicine woman, she talks about every symptom I have and tried to make me a comfortable as possible. I get my ritilan and medical marijuana certification from her. She handles my depression meds, physical pains of any, nutrition. Mental issues, basically it’s the guidance of dealing with my chronic disease by making me comfortable. She’s an angel and I adore her. She listens. They will also become my hospice team as well, when that dreaded time comes.
    I dream of shit like that all the time , sometimes it’s my DH and I goofing off hiking like we always did. Or making love and having those moments. It makes me sad when I awake. Knowing. All of this is gone in ways. I don’t have the same body. Now mine comes with pain. Cancer is a big pot of shit stew!!!
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  • candy-678
    candy-678 Member Posts: 3,950
    edited September 2019

    Mel- Gosh I wish I had a Palliative Care group here. Sounds like what I need. Fighting the hot flashes, the depression, the constipation, the pain, the fatigue. And don't feel I get any help from MO or PCP. Not being heard. And they don't care.

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  • illimae
    illimae Member Posts: 5,710
    edited September 2019

    Good morning everyone 🙂

    I’m here, trying to get motivated to go to the gym this morning. I did have a fun event last night, it was a documentary screening about Ska in the 90’s. Ska is an upbeat style of music that originated in Jamaica in the 60’s, became popular again in England in the 80’s, then had a resurgence here in the 90’s, particularly in Southern California where I grew up. It was a kickstarter funded movie and I am really pleased with how it turned out.

    Well, I’d better get ready before I talk myself out of going.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited September 2019

    Tanya. WOW. You go girl. Can't wait to see you on GMA.

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited September 2019

    Morning everyone.

    Thank you Booboo.

    Tanya, hope it went well!

    Mel. Have a great appointment. Sounds like a wonderful option. And yes. Cancer is almost indescribable. I have threatened to walk around with my original PET scan taped to my chest. I look normal...sound normal...but literally have something trying to kill me inside but that is not what anyone sees.

    Mae. I am SO impressed!!! I have not yet gotten to the place where I feel I can work out. Just walking around is still so very taxing.

    Have a wonderful day all.


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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2019

    Tanya I will tape it!!!! Let us know if you’re wearing anything distinction so we know it’s you!! (Only If you want us to know, no pressure!!)

    whew boy I am so tired!!! After date night Friday night and then I babysat my adorable 3 yr old nephew and he slept over in my bed (hence I got NO sleep) I am barely functioning today. I feel like I am so tired I could cry!!! Lol 😂 no amount of coffee will help. I slept from 10pm-9am this morning very soundly (and thanks to a Benadryl) and I’m still soooo tired!!

    Tomorrow I leave for a road trip to see the beautiful fall leaves of Vermont and New Hampshire. I’ll try and post a pic or two.

    Hugs 🤗

    Philly

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  • booboo1
    booboo1 Member Posts: 1,159
    edited September 2019

    Philly,

    Have a wonderful time. I must admit I am jealous. I will miss my Fall weather and all of the wonderful things that go with it. The sun and warmth are nice, but boy do I miss Fall in PA, and anywhere in New England. Enjoy

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  • illimae
    illimae Member Posts: 5,710
    edited September 2019

    movingsoccermom, thanks but it’s not really impressive. I had been exercising before cancer and I remained doing so during treatment, just my way of life. Also, somehow I was one of the rare lucky ones to never experience the crippling fatigue I often read about. Since anti-hormonals, I feel I have little choice, sitting too long leads to really unpleasant pain and stiffness.

    Looking forward to GMA tomorrow 🙂

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited September 2019

    Tanya-That is so exciting. Hope I will be able to catch it. Have fun!

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2019

    imageLittle and big pals!

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  • Micmel
    Micmel Member Posts: 9,450
    edited October 2019

    wondering how muddling is ? gum doctor, how are you feeling as well???
    No word about Parry either.
    Tanya, recorder already set.

    I am on a new time frame to take my ibrance. One week on and one week off I'm already liking it. I'm already five days into it and getting ready for another break It's wonderful. Saw medicine woman today and I adore her I told her my back had been going out, she asked me. Muscle relaxer? Or physical therapy? Or both Asking me what I can handle I said I would start by walking more, the cooler weather will be making that easier. I'm glad about that. Was also told the weight gain is from the addition of my risperidone!!!! Which has been a heavenly addition for my mental health. I love it. But I can't keep the weight off and I'm never hungry. Just piles on ifId I dream of food. Grrrrrr makes me annoyed! The things we have to go through to even feel better. Or slightly better Or tolerable It's a pain in the ass honestly!!!!! But she's an amazing doctor! Love her

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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited October 2019

    Hello all

    Candy thanks for sharing your feelings and past. I understand I swear it hurts to lose our careers and our sense of self. We were all vibrant and healthy and now we just push trying to make the most of everything.

    I’ll be wearing a pink sweatshirt and a bright fuschia pink head cover/hijab. My mom will match with the sweatshirt and my DH. My 12 year old grandson will be with us with his pink shirt. My husband is dark skinned and we’re light. The emails I received said that we were VIP guests but didn’t say where we would be seated. We’re supposed to go to breakfast afterward and I hope I get to share some of what happens on our thread with others.

    Grannax I admire you lady you’ve been representing for awhile.

    Tanya

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  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited October 2019

    Tanya - I will be looking for you and your family!!! WOO HOO!!!

    Gumdoctor

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