anyone starting chemo in Nov 2005

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2007
    This was the last post I think from her.

    I miss her so


    Hi Odalys & everyone! Don't worry about Stage III, I am Stage IV terminal in Hospice and I am doing great! Life is slower paced for me and I am beginning to just relax and accept what ever comes my way.

    Medications are controlling my pain, so I am starting to feel better.

    I just wanted to tell all of you, hang in there. I got an email from a friend on another group that is in her 60's, I could not believe everything she has been through...she told me she was Stage IV, even ended up in Nursing home for four months, with IV drip of morphine, they said no hope for her. She told me she woke up after four months and found herself in diapers and remembered nothing for those four months. She is now feeling pretty good, gardening, and doing all sorts of things. She is a true blessing to talk to.

    She had a recent pet-scan and it showed no active spots!! Amen for her, I am so happy.....she told me if she can do it, we can do it too!! Keep the faith.......and believe!!

    Debbie~ so glad your little one is talking, I remember when mine started with those little words. Now my Grandson calls me Gamma, and always wants to know if I have snakes (rattlesnakes) in my yard. I just love the baby talk....

    Kaye


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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2007
    Soon the days will be cool again, and we will be sipping hot chocolate by a fire. And watching football once again.

    Tomorrow Virginia Tech is playing for the first time since the massacre. It will be a very emotional day for our little part of the world.

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    Also have a wonderful week end
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    My dear sisters, I need you guys to offer back-up here. I started two threads which have turned into vicious and hateful topics. One of the threads is below....

    http://community.breastcancer.org/ubbthr...&PHPSESSID=

    And just check my recent posts to see the other version of it. There is a smiley face thread and a frown thread .

    Please read it and if you feel so inclined, can you offer some defense on my part? I feel like I am being run off the boards with pitchforks and fire! I started the ribbon smiles thread because I have been thinking a lot about my experience with bc and what it's done for my life.

    Now I am getting judged by several for my faith, judged for trying to put a positive spin on things, and being told I was imposing rules on my threads. It is leaving a really bad taste in my mouth, and even though my dh is telling me to "let it go," (as is one of the kinder sisters in the discussion), I can't. I don't have a thick skin.

    I'm hurt by the accusations, the hatred, and the vile responses. It was obvious that I was looking for happy thoughts by my title, and by my post. I feel like if a discussion thread isn't what you want to be a part of, nobody is making you respond to it or read it. I had foolishly thought that I could be honest and offer my opinions (I guess like I do with you guys). I am being belittled for "telling people to not share their true feelings," whereas in reality I am being told that by those very people!

    I'm so hurt by this.

    Love and prayers,Deb
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007
    I understand what you are feeling, and I know that feelings can't just be turned on and off because somebody wants you to.

    Please don't beat yourself up over this. I have talked to several here on the boards about how bad and nasty some people have been.

    That's why I stay here most of the time. I do lurk, and I read the MoJo board and fun stuff.

    But as far as getting into the deep topics....I stay clear. It just upsets me to much


    ((((HUGS))))
  • Odalys
    Odalys Member Posts: 2,103
    edited September 2007
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007
    Just wanted to send hugs on this beautiful Sunday morning.

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007
    Boy I would love to be at the beach

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    Summer is almost to an end....

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  • Odalys
    Odalys Member Posts: 2,103
    edited September 2007
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    Sending everyone love and hugs
  • AnnaM
    AnnaM Member Posts: 1,387
    edited September 2007
    My dear sweet sisters: our laptop crashed a few weeks back and I wasn't able to get online at all, we are finally back in operating order again.

    Kim, I am so sorry to hear you are going through this. Thank God your brain scan shows so much improvement. I am praying that the new regimen takes care of whatever showed up on the PET/CT and that the treatments don't tire you so badly this time. I remember that you have a good support system to help you take care of your family and I hope they are with you all the way. Please know you are always in my heart and in my prayers.

    Odalys, I am so happy both you and your little sister are fine. I hate how each new scan/test/ache/pain brings all the fears right back there. I wonder if the wariness will ever wear off.

    Debbie, forgive. Let it go. Don't feel judged. Maybe people don't know where to put their anger and it got put where it shouldn't go. We love you.

    Thank you, dear sisters, for missing me! You words so warmed my heart! I have missed all of you these past weeks.

    Those words from Kaye were sweet. Are we sure she's gone? I am still praying for her.

    Margerie, before our computer crashed I saw your pictures and post. What great pictures. Yes, I will learn to put pictures on the web when we get back. No, the Tour de France did not come to Brittany, and we don't have a tv here so we didn't see any of it. The mattress stores and big box things are nowhere near the big city, everything is way outside of the towns because the towns are so old and you can't just raze those beautiful old structures to put in the rinky-dink commercial traps. Indeed, France is gorgeous. We have way passed the halfway mark on our visit and while I was a bit nervous about being away for so long, now I know I will be terribly sad to leave. Little dog absolutely loves her life here; we go on such nice walks after dinner every day and she gets to visit a little boy dog who belongs to one of my friends; they get along very well and both need the socialization. Gosh, I wish she had grown up here; these French dogs are incredibly well-behaved. They get to go in to restaurants and sit under the table. They go everywhere! We tried to take ours to a tearoom and she was good for about five minutes till an elderly lady came in with her little poodle and then ours just lost it, lunging, barking, almost whimpering with displeasure. Needless to say, we had to leave. The other nice thing is that it's summer but never too warm to go out. We take her to the beach, too.

    I got to see my daughter! She was here for three weeks and we had a fantastic visit. I love her so much it aches. Stepson came a little later on with his girlfriend for a week and we played lots of cardgames. We have had fairly lousy weather here in Europe this summer, lots of rain and very very cool, windy days. Hubs and I don't mind at all; we have lots to keep us busy in the house and garden, and we see our friends here more than we do the ones we have in Virginia.

    I think I mentioned that I had a fall the day we left home; it was on the side where my hip had been getting steadily worse. I already had arthritis there, and the orthopedic surgeon told me to think about getting a replacement. I think the chemo might have accelerated the deterioration. I had been doing my workouts and seeing a physical therpist regularly right up until our departure, but that fall put me really behind and I haven't been able to get back to where I was. I can walk for about 15 minutes, but that's the max and boy do I limp. The pain is now also in my knee and along the leg, and the doctor said that's pretty standard with hip problems. (Of course I have lain awake at night wondering if the pain might be something else.) I have decided to look into getting a hip replacement when we get back. I was hoping that surgeries were a thing of the past for me, but I guess not.

    It is absolutely remarkable how totally I have put my treatment out of my mind, so much so that I have not been in touch with my doctor(s) as planned, nor have I solved my doctor dilemma (do I stay with the "new" oncologist or go back to the "old" one). I know I am seeing my breast surgeon one week after we get back and I suspect we will be talking about that pesky axilla node my "new" oncologist blew my mind with just before we left (making me go through an ultrasound, an MRI and a fine needle biopsy of the node but ending up with "nothing conclusive").

    Not having a tv is very good for the psyche. We have been reading books and playing games, watching the tides and sniffing the wonderful air. We do read the newspaper, but spend more time on the word jumble than on the editorial page these days. The world out there is just too crazy. I just have to remember that God loves each and every one of us and that we are all brothers and sisters no matter how much we think otherwise. The hardest lesson is that of forgiving, but it is the most essential.

    I miss my sisters and send each one of you my love and affection. I will try to come on here regularly now that we have our computer back.

    Anna
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007
    OH Anna !!!!

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    It is so good to hear from you after such a long time. It sounds so nice there.

    As for Kaye, I don't know if she is with us or not, but she will always have a place in our hearts that's for sure. She is not forgotten.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007
    Yay! Anna's back!


    Time for bed....love and prayers (especially to Kim!), Deb
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007
  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    I thouhgt I was going to lose our group with the new format!  I don't like this at all! 

    Typing one-handed cuz my kitty is snuggled on lap.  Love and prayers, Deb

  • Odalys
    Odalys Member Posts: 2,103
    edited September 2007

    Geeze...I can breath better now.  Thought I lost y'all.  Goodness I do wish they would make the font larger though.  When I use my laptop the font is <8 pt.  Now I really will need to pull out the bifocals.  Cool  anyway, enough complaining.  It's a free service...right?  I hope everyone checks in just to make sure you are all connected and doing good. 

    Deb - I'm going to try to send you a PM to see how it works.  Sending everyone a great big hug.

  • AnnaM
    AnnaM Member Posts: 1,387
    edited September 2007

    Having trouble getting to page one....

  • AnnaM
    AnnaM Member Posts: 1,387
    edited September 2007

    Oh, I think I just realized what was going on. The top of this page has jetjill's first post, so I kept thinking I was going back to page one of our thread.

    This is all very confusing.

    Love to my sisters.

  • Odalys
    Odalys Member Posts: 2,103
    edited September 2007

    Hi Anna - Welcome to the confusing world of new boards.   It's been a very frustrating week trying to figure out the new format. Yes, every page has the original post.  Members requested it.  If you ask me, it's a waste of space on every page and very confusing.   Anyway, hope you are doing good.  When are you coming back Home?

  • Margerie
    Margerie Member Posts: 526
    edited September 2007

    Help!!!  I am having the opposite problem Odalys- my font is huge- probably 20 or something.  I am gettinga headache and it takes 5x as long to load a page. Arggghhhhhhhhh!!!!!!!!!!!!

    The bc.org home page is fine, but when I load the community knowledge (sorry, a crappy name) boards- the font goes HUGE!!!

    I don't think I can fix it because if I shrink my font, then all the regular pages will be too small.

    Going to check in later.

    Glad you are back Anna!!

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007
    Cry Oh I don't like this at all.....I don't  really don't. My font is huge too, and where are the colors?
  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007

    Does this work, it is my new picture. With hair! It was taken the end of August 2007...

    <a href="http://photobucket.com&quot; target="_blank"><img src="http://i53.photobucket.com/albums/g63/mrepass/IM000465_edited.jpg&quot; border="0" alt="Photo Sharing and Video Hosting at Photobucket"></a>

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007

    <a href="http://photobucket.com&quot; target="_blank"><img src="http://i53.photobucket.com/albums/g63/mrepass/IM000465_edited.jpg&quot; border="0" alt="Photo Sharing and Video Hosting at Photobucket"></a>

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007

    How do we do pictures?

  • Odalys
    Odalys Member Posts: 2,103
    edited September 2007

    MaryLou - I don't like it either.  Most of us are struggling too.  Here are some instructions for posting pictures http://community.breastcancer.org/topic/93/conversation/691885

    Margerie - Community Knowledge Exchange my foot!  What happened to a language everyone understans like... Discussion Boards...dah!   Yell  I'm going to see if I can find some intructions to help you.  I'll be right back.

  • Margerie
    Margerie Member Posts: 526
    edited September 2007

    Thanks Odalys- but everything looks normal font wise today.  Except this reply box- which is huge.  But I can live with that.  They had better get the sign in every time thing fixed, and the unread posts back.  I just can't deal without these!  If they can't figure it out, I vote for setting up our own discussion board over at proboards.  It is free and has all the old navigation tools we know and love.  Not sure why this system has to be so user unfriendly.

  • Odalys
    Odalys Member Posts: 2,103
    edited September 2007

    Margerie - Yeap...I know what you mean.  As a matter of fact, Gina, one of the circle girls, set up a discussion board for us while bc.org gets all the wrinkles ironed out.  We call it our rental place.  Laughing

    Here is the site in case  anyone wants to join us too.  http://www.websitetoolbox.com/tool/mb/nosurrenderbreastcancer

    Everyone is welcome! 

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007

    If you guys would join myspace we can all talk and share all the pictures and info we want....I now have over 127 friends that have found me. Once you get used to it, you will love it.

     I just hate it none of you are there with me :(

  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2007

    What happened to my picture and my siggy? Do I have to do that again too..... Thanks for the info on pictures....I will try...

    Grrrrrrr

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    ML-I "joined" myspace the other day, but have no idea what to do.  I am like the nerdy girl at the junior high birthday party that is sitting in the corner and wringing her hands awkwardly. 

  • Margerie
    Margerie Member Posts: 526
    edited September 2007

    Thanks Odalys- I joined over there. A great site and so easy- I loaded my avatar in about 10 seconds. This site is way too slow!!

  • kim825
    kim825 Member Posts: 284
    edited September 2007

    Hey all.  I thought I lost you all.  Our computer crashed and we have been w/o computer for 4 days.  Yikes.

    Doing ok.  Had a bronchoscopy Monday.  I have oxygen at home to help.  Still on nebulizer.  Things have been really crazy and I am scared about how to handle this Disney trip.  We leave Monday.  I think we have covered all our basis but you never know.

    I just want to thank you all for the cards and gifts.  You will never know how much it all means to me.  Maybe you can help me.  I have been getting cards from women from bc.org site.  I don't know them, but they know my situation.  I think this is wonderful, but I didn't know how they found out.   Anyone with any ideas? 

    Kim, who also hates this format.

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