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  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited November 2013


    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/breast_cancer_program/rare_tumors.html/breast_sarcomas.html


    This might help a little. It looks like the treatment is very similar actually to breast cancers that are considered triple negative (Er-/Pr-, Her-), many of the chemo agents are the same. Surgery and radiation are similar, but clear margins are more important, so chemo or radiation before surgery might be used to shrink the tumor. Lymph nodes are not typically involved, so ALND is not usually indicated.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited November 2013


    Hi to Elaine, thanks for dropping by! If you ever feel adventurous, look into coming to one of these incredibly rich countries - Dubai, Bahrain, Kuwait City, Doha - the most luxurious 5 star hotels I've ever seen with huge spas! These massage therapists are making a ton of money! I had a gift certificate for my birthday and went to one and holy cow, woweee! It's something to behold. Anyhow, I thought of you! :-) All of the high end American chains are over here.


    Refusing, welcome to the boards - the ladies out here will just wrap their arms around you! You do whatever you think is best with YOUR life. That's the lesson Cin taught me. It's our life, our bodies, our decisions - oh my, I sound like Miley Cyrus now! Also do consider your parents, though. That's probably the gray area for me when thinking about it's my life - well I wouldn't be here without them, so in a way, it's their life, too. Not sure that makes sense, but wanted to share. As an older mom, my feelings maybe have changed a little, thinking about my daughter taking a certain course of action. Of course I would want her to fight for her life, but then again, I also have raised her to be an independent, critical thinker and she has great judgement and a good "sense" of who she is, etc. I am babbling right now, wish we could have this convo over a cup of coffee! I'm a retired military officer with a military hubby (we came over here to be with him) so my sense of the fragility of life is increasing with my time on the ground here in a volatile region.


    Anyhoo, hope you all have a great day! It RAINED yesterday - literally poured! I am headed out to the desert later to see if anything bloomed and I will take pictures!


    xoxo

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited November 2013


    Carpediem, thanks for dropping by. I totally agree that Cin taught us some very powerful lessons, and I am struggling with them myself.


    I am very down today, and having lots of thoughts of discontinuing treatment - am so tired, have so much pain, am so limited in what I can do and what I can enjoy. I am feeling so very very ungrateful right now, and I know that ingratitude is one of the worst sins according to one spiritual teacher I know. I try so hard to find little things to be grateful for, the sunny day, the lovely rain that brings out the plants and flowers, the cup of coffee with a friend. But I am NOT grateful for life itself, and I feel very guilty about that, because I know my parents sacrificed a LOT to give me life, but I don't think they had any idea how miserable I have been for most of it. Like Cin, I had childhood health issues that left me unable to be "normal", yet I persevered, I was strong, I met challenges and became a respected professional. I got pleasure from my work, and from my soulmate. I got pleasure from many things I can no longer do. Those were taken from me 3 years ago when my cancer team treated me with "standard evidence-based care" rather than "patient-centered care." I no longer am able to work, participate in music other than voice, not able to play tennis or hike or backpack, garden, cook, enjoy a true beach vacation; intimate or for that matter ANY physical contact causes pain and discomfort. I can do a little art but tire so quickly I cannot complete most of it. I cannot even get the energy or drive to write a letter to my surgeon wondering why I ever need to see her again as there is nothing she can offer me that I will try because she misled me into a false sense that I was at low risk for lymphedema, despite what I now discover were some very high risk factors that occurred (post-op infected seromas, axillary cording), she never sent me for the evaluations or patient ed before surgery that she told me she would do, said I was at low risk.


    My current MO is wonderful, and last PET scan showed improvement in one of the bones and some of the nodes, but the meds are making me miserable in their own way. Wearing bandages or LE garments that are uncomfortable and painful over neuropathic skin, wearing bandaids over several fingers where my nails have thinned and split halfway down the nail-bed and get caught and ripped more, snag on garments, joints hurt so bad in my ankles, feet, hands, wrists, hips, ribs. I pray every day that I will not wake up, but every day I do. I don't know what more is being asked of me in this life - I wish I knew if there was a purpose for me to continue. I truly want to quit taking the meds, but am also fearful of the path ahead. I don't think I will ever get better, only worse, and I wonder if I can just speed things along a little by not taking the meds, and maybe I WOULD feel a little better for a little while as the meds are eliminated. Is this truly as good as it gets?


    Sorry to be such a downer today. Just needed a safe place to vent.


    Much lovingkindness to each of you.

  • MaryLW
    MaryLW Member Posts: 1,585
    edited November 2013


    Linda, you have so much to deal with. Of course you're feeling unhappy. I'm not a religious person, but I sometimes envy people who are, because they can take comfort in a happy afterlife. Actually, I think we just die. There is a book that I find kind of comforting, though. If you're not religious (but maybe a little spiritual) you might like it. It's called The Instruction, by Ainsley MacLeod. I think I spelled his name wrong, but it's close enough.

  • wren44
    wren44 Member Posts: 7,930
    edited November 2013


    (((((((Linda)))))))

  • aaoaao
    aaoaao Member Posts: 245
    edited November 2013


    Linda, please don't ever feel like you're being a downer. Cancer is the downer. Sometimes this is the only place we have to express the hell we are going through. Our friends and families can't take heavy emotions we feel. I wish I had the ability to tell you the right path to take but at this point none of them are ideal. All I can do is offer a shoulder to cry on.

  • itsjustme10
    itsjustme10 Member Posts: 64
    edited November 2013


    (((Liinda))) I have no words...you are not being a downer, or a complainer, It's how you feel...and you have more than earned the right to feel however you want about things.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited November 2013


    Hi Linda, sending you lots of gentle hugs, sweetie! Wish we could just sit in your garden and visit. Like the others have said, you've earned the right to vent and express your feelings of frustrating, questioning, etc. I have no answers, but agree with everything you've said. I think you're an amazing person not to feel anger towards that "care team" that impacted your quality of life. It's ok to not be grateful, and that's just one spiritual advisor's opinion anyhow ;-) I'll be back later to check on you, but wanted to say hi now and send you some peaceful thoughts.

  • ali68
    ali68 Member Posts: 644
    edited November 2013

    Hi Linda, really sorry your feeling like shit i wish i had a magic wand!

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited November 2013


    Thanks everyone for the hugs and prayers. And BTW, Carpe, I DO feel IMMENSE anger toward my "team" but have to let it go or it would consume me. I keep telling myself I forgive them, but geez, those waves of extreme anger keep coming back over me at unexpected times.


    I woke today doing a bit better, at least not crying. I have a task list to get done today. For some insane reason I invited my entire family for Thanksgiving, which is fast approaching. I think maybe I thought it will be the last time I am able to host, and possibly the last time I am with them for this holiday (but not feeling that bad today - I may last a few more years). In any case, I will be busy and the brain has less opportunity to wander down dark alleyways that it should avoid.


    DH offered to take today off to spend with me. The days that I find most enjoyable are the ones I spend with him, but he had such a packed schedule that would have been so hard to rearrange that I sent him off with assurance that I will be fine. And I WILL be fine today!


    And I have gratitude for Cin, our fearless leader and example, and for each of you across the miles. Thank you for letting me rant, for the understanding, and the caring. Hugs right back at all of you!

  • sarahsmom
    sarahsmom Member Posts: 276
    edited November 2013


    Aw your DH sounds awesome!!! YAY for him offering to stay with you, sometimes the intent is as good as the real thing...just knowing they are "there" and our touchstone.


    It's funny, when anger about something/someone eats me up and saps my energy, sleep, etc, I realize the other party isn't awake thinking about me! They're in a blissful sleep while I, already down and out, dig a further hole for myself with the anger. Ugh! Not fair, feels like they win twice. Keep pushing it back, you're doing a great job :-)


    Anyhow, the day is almost over here...hoping yours is filled with moments of peace!

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited December 2013

    bump

  • sarahsmom
    sarahsmom Member Posts: 276
    edited December 2013


    Thanks, Blondie! Checking in from the desert where it is still in the 80s and hot every day, doesn't feel very Christmasy! The locals are not only very tolerant of our Christian faith, but join in the fun! Some Arabs even put up Christmas trees, how interesting!


    Hope you all have a good day ahead, no pain, surrounded by love and doing something you love! I'll be back later, need to get the day rolling here, but wanted to share this fun picture making the rounds!


    image

  • heymoose
    heymoose Member Posts: 682
    edited December 2013


    Carp, what a cute picture. Hope you are doing well.


    Hugs to all,


    Cheryl

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited December 2013

    Love the camel! Glad to hear from you!

    Cheryl, I used to live near Rochester. Loved the area, even snow, although I hear you are all taking a pounding this year!

    Hugs to all. Remembering Cindy with gratitude.

  • april485
    april485 Member Posts: 1,983
    edited December 2013

    I love that camel Carpe! It made me smile almost as much as the "humpday" commercial with the camel bugging everyone with the question "What day is it?" LOL

    Missing Cindy but knowing she is not in pain any more.

  • heymoose
    heymoose Member Posts: 682
    edited December 2013

    Linda, I was born and raised in Rochester, moved to Buffalo for college and stayed here.  Yes we have been getting quite a bit of snow, 26 inches so far this year.  

    Missing Cindy

    Have a great day, hugs 

  • itsjustme10
    itsjustme10 Member Posts: 64
    edited December 2013

    OMG, I love the camel - it made me smile for the first time today!! Thank you for posting that picture. :)

  • ali68
    ali68 Member Posts: 644
    edited December 2013

    Hi everyone, hope you all enjoy the holidays and have some fun. 

    I have had a terrible few months and I'm looking forward to chilling out with my two books. I went and had a op for abnormal cells ( cervical cancer ) they told me it was low grade from the biopsy then they decided that was wrong so they called me in. 

    I have had my mammo and looking good so a check up in six months and mammo next Dec. 

    my middle daughter ( eating disorder) is getting better and putting weight on. Still a long way to go but so much better. Youngest daughter had a bad time and I found a hypnertherpist who deals with disorders and other life problems. She was seeing a councillor but she made her worse always being negative and telling how bad her life was. Let me tell you I told her to re train and she is lucky I'm not making a complaint. 

    This guy makes her laugh and tells her how to cope with everyday life. She has been under three times and it is working. Before she couldn't sit exams because she was so stressed and no self confidence and now she has done her mocks and only had a little glip but was able to pull herself together. 

    She still has issues with DH but they are both trying to get on,  still very raw about her grandad but some good news for her. Her best friend moved to another country but it didn't work out so she is coming back.  She has got an interview for a good college to do her A' levels so things are looking up for her. 

    Alison xxx

  • leggo
    leggo Member Posts: 379
    edited December 2013

    Carp, thanks for that picture. It's hilarious! 

    Ali, good to hear things are improving for your daughters. Doesn't seem to matter what we go through if our kids are struggling, so I can imagine how hard this is on you.

    Elaine, I don't know if you still read here, but I hope you are doing o.k. I miss Cindy very much and hope the pain of your loss is subsiding. My thoughts are with you, Rick and the rest of your very special family.

    Checking out over the holidays, so Merry Christmas and Happy NewYear to you all. 


  • ali68
    ali68 Member Posts: 644
    edited January 2014

    Happy New Year to all. I miss Cindy so much! She made me a better person and I will love her till the end. Sending love and peace to her family! 

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited January 2014

    We entered 2013 with Cindy, entering 2014 without her is sad, but what she gave us makes it so much easier to face the future, whatever it brings. 

    Wishing all of Cindy's family and friends here a year of peace and healing.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited January 2014

    Linda, I was thinking about you this morning and your posts about gratitude...a friend just sent me this link and I love it! 

    http://www.upworthy.com/you-take-zillions-of-photo...

    I also miss Cin and her "voice" and presence in this world.  I am going to try to keep honoring her memory by living my life to the fullest with no regrets. I picture her out on repo runs with Rick, guzzling M&Ms and working in her garden to pull weeds from her wheelchair, bless her for teaching us much about life and LIVING!

    Love and hugs to all of you wonderful ladies as we face 2014 and the many challenges it will no doubt bring, but also, the many blessings and joys!

  • april485
    april485 Member Posts: 1,983
    edited August 2014

    Cindy, please watch over Linda n-3 as she has joined you now. Some other beautiful ladies from this thread have been gone a while too....Marybe and Athena come to mind. Gone but not forgotten, RIP dear ones....and thank you for all you have taught us.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2014
    Cindy,
    I am glad that you are at home and the pain isn't bad. The first thing I thought of when I was told I have cancer was I don't want to be in a hospital in terrible pain the last months of my life. That scared me the most. Praying for you.
  • goodprognosis
    goodprognosis Member Posts: 195
    edited December 2014

    Bump.

    Hello all those who followed this thread by Cindy-Rose.  Thought you might like to read Cindy's sister's latest post on her blog.

    https://cindyscancers.wordpress.com/2014/11/21/its-been-awhile/#comments

    Nicci

    I tried to leave a comment on Cindy's blog asking your permission to add the link here but I couldn't manage it.  Hope it's ok with you for me to put the link here.
     

  • goodprognosis
    goodprognosis Member Posts: 195
    edited June 2015

    testing for address.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited August 2015

    Hi ladies, it's been a long time since I checked in. I see that sadly my lovely gardening friend Linda has joined Cindy, I know they are having fun pulling weeds and watering flowers somewhere we'll all be one day! Hopefully they'll make a nice soft landing for all of us.

    I'm back in the states now and time to face the music, my 6 month mammo recheck is now 18 months overdue. I decided to roll the dice with no regrets so I could be abroad with my family (medical care off of the economy not great/scary), they were thriving and I didn't want to be the big wet blanket. So time to take care of self again and see what might be cooking.

    I'll be checking in more regularly now, so PM me if you'd like. Hugs to all!


  • goodprognosis
    goodprognosis Member Posts: 195
    edited November 2015

    bump

  • goodprognosis
    goodprognosis Member Posts: 195
    edited November 2015

    Hi suersis. I used 'Bump' to reactivate the thread in order to see if some of the people I used to talk to here, were still here. Sadly, the one who created this thread, Cindy-Rose passed away some 2 years ago now. I'm sorry if I gave you the impression this was still an active thread, it hasn't been for a while now.

    I follow you on other threads but don't post as you will see that I'm not Stage IV (TG). I used to post on this thread as the other's allowed me to.

    I wish you all the best in your treatment for the years to come.......I'm catching up on you fast........I'm 62 now and counting!.

    ((((hugs))))

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