INSOMNIACS place to talk in the wee hours

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013

    Nicky, awesome photos...love your line about the ambulance/undertaker..let us know if your "proper cut" is what you were hoping for...

    Chevy, also nice Pinterest photo, could you see how they reached the top of that? Staircase up the center ? Thx for the tips on credit card safety, I have been really lazy about all that, & I shop @ Target a lot...

    Sas, fearless leader, energizer controller, why no fly ?....it's a big world out there...

    Cami, I'm with you, once I lost those eyelashes, I gave up on the whole makeup fiasco. I took your attitude about smelling good was good enough! Most likely though, when I get back to "normal" if that ever happens, I will go back to my very basic makeup routine...

    Golf girl

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    H-I-1----fearless leader is fearful of getting LE. My twin developed LE in < 24 hrs flying here to Florida approximately 6-7 months after MX  in1996. Her life has been controlled by it since. She's in a medical wasteland. She was able to get the sleeve and gauntlet, and the night time machine. No LE therapy available then or now. Her QOL affected so dramatically, I am very protective of not doing stuff to risk LE. She and I are mirror images of stuff going wrong.

    GG- In fact I'm here b/c I was going for a phrophy BMX in 2008--------bingo 7 months into working through the hoops for insurance approval BC was found. NED on mammo in Aug, found on MRI in Dec, Very aggressive on Path report on BX(Jan23rd 2009)---grade 2 (6)>>>BMX (Feb18th2009)--grade 3 (8). What's that 26 days later.   I'm feel blessed to be here

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Chevy---asking Holeinone if she's golfgirl and GG. and H-I-1.  You are the queen of giving us nicknames, I just beat you too it sweetie XOXO

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  • NickyJ
    NickyJ Member Posts: 722
    edited December 2013

    Chevy, no, I've never seen that before. It looks amazing!

    Jazzygirl, I like the sound of your New Years plans. I like the sound of the torte as well. Is it something you've made before?

    Camille, aw, shucks! Thanks for that! My hair was just very lightly trimmed in July to get rid of the whispy bits and has just been let grow since then. Can't wait to get it cut into some sort of a style!

    I do wear makeup when I go to the doctors. I wonder why they told you not to? I'm sure you look beautiful with or without anyhow!

    Nicky

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  • NickyJ
    NickyJ Member Posts: 722
    edited December 2013

    I had prepared a long post and I've just lost it all!! Oh well, I'll try again😁

    Sas, white houses with red roofs is quite common in France, but there are a lot of very distinctive styles. In Bordeaux, houses are often built in sandstone, the local stone. Further south in the Dordogne is the 'landaise' style - more of a chalet style with lots of wooden beams.  Then in the Perigord there's the 'perigordine' which is white painted bricks with a steeply sloping slate roof, and lots, lots more. 

    As to why we're here; ask away! I don't think this is the thread for secrets!!'😜

    When our children were small we used to holiday in France. We really liked the lifestyle and the culture. Then one year we started joking about packing up and moving. When we got home the jokes continued, until it got to the stage where we started to look into it seriously!  We chose Bordeaux because: 

    We needed to be near an airport with direct flights to Dublin. 

    I wanted to be near a city. I love countryside, but I need civilization!!

    I grew up on the coast so I wanted to be not too far from the sea. 

    Lastly - if we were moving to France, we wanted to be in the sunny south!

    So we moved; lock stock and barrel, with 3 kids aged 8,4, &2. I didn't have a word of French, but my dh did. I was going to be at home with the kids and dh had found a job in Bordeaux. And here we are 10 1/2 years later!

    Hope that answers your question 😊

    Nicky

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  • NickyJ
    NickyJ Member Posts: 722
    edited December 2013

    By the way, I didn't know you were a twin? And the 2 of you ended up with bc? Sometimes life just isn't fair!

    I understand what you mean about LE taking over your life. My LE is arm and hand, trunk, leg and foot, all on my left side. And my left side is my dominant side. I can no longer peel or chop vegetables; my son got into trouble in school because the teacher didn't believe my signature had changed that much (some days I can't hold the pen) and I damaged my right knee and needed an operation a few weeks ago because of limping with my LE leg. I have shoes and clothes that I can no longer fit my left side into.........the list goes on. LE sucks!

    Nicky

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013

    NickyJ, sounds like you and DH were adventurous types & had the confidence to leave family, move to a perfect place to raise your family..thanks for describing your locale, terrain, and life in the sunny south of France....why does that sound so magical to us here in the US ? The beautiful French language, excellent wine, or those to die for pastries ???  I did love the pastry when in Paris.  Nicky, I am so sorry that your LE is so bad. You sound so positive, happy, caring mother and you have been through too much.

    Sas & Chevy, You can call me H-I-1 or golf or whatever is easiest to type..on another thread, this gal thought my Holeinone was dark humor for the analogy of my lumpectomy...Shoot, I'm not smart enough to come up with something so coy....

    Golfgirl

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Nicky, Thanks for your answer on the move. It all sounds so exciting, AND well thought out. Very much like the descriptions of all the other communities too. Hope you are happy with the new hairdo :)

    The LE stuff just so sucks. Have you visited the LE threads here? I'll link one on flying. Binney4 and Kira answered some questions for me. It's a short thread. Their responses are very helpful related to flying. When twin got LE,  the info relating the two--LE and flying-- didn't officially come out till 6 months later. 

     I haven't perused any of the other LE threads, but know many that have stated how helpful they are. Just as anything cancer, here we are in time and no answers. Forget who mentioned within the last few pages that it's 45 years after landing someone on the moon and no progress.

    The statistic of 1:8 women getting cancer, wish I could remember the article I was reading that broke it down to: A 1:4 chance in USA, 1:_(?) think it was 6 or 8 in France, and then mentioned a couple of other countries which I totally blank on. I was gobsmacked when I read the stats. The point being the stats are epidemic. There are billions being spent in research. Yet, we are no where. They have effectively solved the HIV/AIDS problem for developed countries in such a short time. That's a rather bold simplistic statement, but it's way to involved to talk of here. Yet, we are no where.

    Keep the pics coming and the stories, I don't think I'm speaking out of turn in saying most of us (Americans ) are intrigued with France.  Be back with the link.

    http://community.breastcancer.org/topic_post?forum_id=64&id=811841&page=1

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  • Teka
    Teka Member Posts: 10,052
    edited January 2014

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2013

    I forgot!  I just want to say ENERVA!  Those are beautiful boobs!  I mean mine have never looked that good!  Even at 16 or 18, or whenever I was supposed to grow nice boobs! 

    If I had those, I would probably run around naked!  Naked as a Jay Bird!  And/or wear White V-necked Tshirts, with no bra, that say YES I'M PROUD! 

    Good for you....  If I had those at my age, I would be dangerous.... shut-up Cammi...

    Yes I'm intrigued with France.... and French kissing.... Do they really do that there?  Ha, ha!  It's GOTTA be an international thing.

    I remember when I was little, looking at these awful cartoons that Dad had hidden in his drawer....  I had them in my lap, sitting on the front porch, and our neighbor came over and said "What are you doing with those?"  And I said they are my Dad's comics... She took them in the house, and THEY HID THEM IN THE SAME PLACE!

    My Brother and I were the hit of all the kids in the neighborhood!   But I remember thinking.....  "these are just comics.... these are not real life...  people don't really do these things......  they are just comics." 

    So what were you all saying?   Oh CAMMI!  Yur Durn Tootin' silly face!  I wear make-up every day....  To the store, out to empty the trash, and just EVERYwhere!    I don't think anyone would recognize me without make-up... So I don't put them through the misery of seeing me make-up-less....Ha! 

    Teka, Sass, GG and Nicky..... Hope you all are having a great Sunday...

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited December 2013

    Hi Nicky- the torte is actually coming from a local restaurant in town that makes the best desserts. Too busy with work (and lazy too) to make anything right now. BTW, I love all things French and have a cousin who lives in Paris. How wonderful you got to move there.

    I have heard about a lot of sisters who end up with BC who don't have the BRACA gene. My sister and I are in such a situation. Diagnoses two months apart but with very different breast cancers. There is more to this than anyone really understands.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Hello Chevy, yes, re: cami's makeup thing. I look at this face and Oh well without makeup it's so washed out. In 4 years wow, I aged, to my age. Before routinely taken for many years younger.

    Blessings I think it was you that asked about bone density problems on AI's. I lost 4% density in hips in 2 years. Spine stabile. Wonder what the rest of the bones lost.

    Jazzy, Shells,  Spookie, Phillyinthehinterland----Hoot-hoot where are you. Who'd I miss? Sorry, We must make up a word for our memory issues.

    Maddy, hugs, loved chatting.

    YOO_HOOTING  to the southlanders


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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Hello Jazzy-------you "Hermie Hooting________" Seriously if you join STFU too, you'd be a "Hermie Hooting Hooligan" That would be so cute on a tee shirt----it would befuddle everyone :)

    Jazzy, I have 53-- Dad/aunts/uncles/ first cousins on paternal side. The count on BC is 9 of 21 women. All that were tested are Braca neg. The cancer count of men/women is 24:53, 21:53 are major cancers. Anyhoows, can't get anyone interested in looking at our genes. Can't even get the relatives to take it seriously. It's like I'm crying the "sky is fallin". I've traced it to Paternal GM. A full second cousin traced GF's (his GF and my GF were brothers) geneology back to Ireland and visited family there. Only cardiovascular disease on that side.

    I truly think it'd be worth something to look at our genes, b/c there is a very bad  break in there some where.

    Jazz sorry about your sis too :(

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  • kathindc
    kathindc Member Posts: 2,042
    edited December 2013

    Sas, have you gone to Dr. Love's web site where you sign up to partake in surveys and such?  Just wondering as there might be a research group that would finally find your family history with cancer of some use in their research.  I know her foundation does huge mass mailings for researchers to find volunteers.  You can ignore or partake in whatever fancies you.  Just a thought as I think someone in their right mind would finally say, hmmm this could lead to something.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Kathy Thanks, I'll do it right now. It's moved into the next generation. One 1st cousin who has BC and liver mets, her oldest son has Kidney>>colon>>liver>>prostate cancer. He has managed to survive for 7 years. Yoo-hoo-hooting at you, a lead. :)

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013

    Jazzy, your torte sounds delicious & fantastic you have a jazzy evening planned with jazzy friends. I hosted a New Years Party last year in our home...I think DH & I will be hanging. New Years Day has possibilities of a fun outing..

    Sas, I feel like I have aged 5 years in 5 months...that has to be "normal" for bc...you have a lot of relatives, 2 aunts for me, 4 cousins...makes it nice, no houseguests...lol.

    Chevy, you must of been trouble........

    Golfgirl

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2013

    GG.... Well I WASn't, but I've sure made up for it..Ha!   I was the quietest, little elf on this planet.  I was not a happy little girl.... can't remember any of my schooling, because of a brain concursion, and  amnesia, and  I just shut out a lot of unhappy memories when I was growing up.

    After I met DH, and my folks left, and moved to CA, did I really begin to have my own life...   It's like we started out with nothing...just each other....  We married when we were 20...  (He was 19) and had our first little girl a year later.... then another one  2 1/2 years later....  Our life was like perfect!  No money, nothing, just us 4...  And it was all I had dreamed about.  .  I've really had a wonderful, life...  and FUN! 

    You gals are a pleasure to wake up to, and to read what you say....   YOU make me silly, and  I love being with you all....  

    Being happy takes a lot of work sometimes....  and forgiveness ...... 

    Now I must get busy saving this planet....Winking

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2013

    image

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  • Teka
    Teka Member Posts: 10,052
    edited January 2014

    Get Your butt in gear!

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2013

    Little Teka!  Go wake Cammi up!  She has had enough sleep....  I don't even know what a Torte is....  so I am lost......Is that like Tort the Turtle which I played when I was in Camp Fire girls by the pool, with this little box on top of me?  Must be the same....

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013

    Tort the turtle by the pool? Yes, maybe Cami can explain....or make up something equally ridiculous....

    I was in Woodcraft Rangers, for a short time...sounds like that is imaginary also...

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  • kathindc
    kathindc Member Posts: 2,042
    edited December 2013

    Sas, hope the lead works!  I can't believe a researcher out there can not see the value of your family's history.  Adds to my feeling that there is just too much money to be made in "curing" cancer.  Would talk to a friend whose mother had cancer way before my dx and we both felt that way way back then.

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited December 2013

    But mine is true!    Everyone else was dressed up like a fish, for the water pageant... But I had a green box over me... That's probably because I was the smallest person ever...  so whoever could fit under that box, was Tort. 

    What is "Woodcraft Rangers?"   Oh wait till Cammie reads these....  She will understand completely....

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013

    my after school day care provider, 3 rd grade, 1963, was the Woodcraft Ranger leader..she was a super mom. Great seamstress. So, I had to walk to her house after school & hang out for 3 hours waiting to be picked up..no choice, I was in the Woodcraft Rangers...damn, I wish I still had the dress or the badges. It was a lot homemaking stuff. Maybe I did not graduate to the woodcraft part....

    Chevy, you were a Torty turtle by the pool, the pool part sounds good, I remember Camp Fire girls, didn't they have the cute blue dress?

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Kathy, I sent a contact message, I will let you know what the response is , for sure. I had a very odd de'ja vu feeling as I was typing it, particularly at one point.  Nonetheless, we shall see. :) Thanks again.


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  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited December 2013

    Far behind again as usual....sigh !!!!  I even skipped a page ( oohh I'm really bad now ) to try and save some time.  Don't know why it is so hard for me.  Kathindc, I'm somewhat on the same page with you on cancer cures.  After many things are cured......where will companies and executives get their big money.  It is the one reason I am so hoping that we could see a good 'insurance' program.  Seems it would be wonderful if several thousands of people stopped getting sinfully rich and another even larger group ended up with a cure.  I think its a wonderful trade.  Hope I haven't made anyone distressed over my ramblings.

    Lilli


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  • grammaB
    grammaB Member Posts: 1,172
    edited December 2013

    Oh boy, there is no hope of ever catching up!!

    Teka, we loved to travel!  I haven't done too much since DH passed in '97.  I did go to the Philipines, Singapore, Taiwan, and Thailand in 1999 and to India for a month in 2000, but that is all I have done.  I went to India with a group, and was in the Philipines with the Jimmy Carter Work Project from Habitat for Humanity, but the others I did on my own. Kind of scary, but quite an adventure.

    I really lucked out with the Target thing.  I was in there and did all my Christmas shopping on the 26th of Nov, the day before the theft, and haven't gone back since.  I have had my purse stollen with a bunch of credit cards in it and do know how awful it is to have to cancel everything.  Since then I only carry 2 cards in my purse at any given time.  One for business use the other for personal use.

    No make up here either.  I do put on a little Bare Mineral foundation and blush when I go to the dr, but that is about it.  Never was one to do make up even when I was younger.

    sas, could you take a cruise to Europe and visit those places? Then take the trains in stead of flying.  We got a Eurail pass here in the states and traveled all over Europe by train, never rented a car except in Hungary so we could drive his family around.  Don't know if they still have Eurail passes anymore.

    Chevy, love the Pinterest photo! Kind of reminds me of Lisbon, lots of white buildings with red roofs there too.

    Jazzy sounds like a cool New Years Day gathering. Nice that you are able to participate this year.

    Nicky looking forward to more photos!  So sorry to hear of your problems with LE.

    Well I managed to read one whole page!!  Posting before it disappears!

    Hugs

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Holeinone LOL, if my number is right there are 88 total from mom and dads sides put together. That does not include any spouses. The count of paternal side 2nd cousins that kept contact was never done. It was great  growing up. What fun visits were. It's amazing how many of us keep in contact. The grands all passed before 1965. Generally, the contact that we all have would have fallen away by now. Many of the first cousins kids are close which is neat b/c none of us had the numbers of kids our parents did. For example, I had 43 on dads side and 18 on the moms side=71 1st cousins. LOL, the numbers is off somehow, but close enough when you get that high.  DS has 5.

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  • kathindc
    kathindc Member Posts: 2,042
    edited December 2013

    Sas, did you also sign up for the Health of Women and Army of Women?  The Health of Women does ask about family history.  This is where you are contacted for research.  Hope you are given a positive response.  You certainly are trying to help others because of your family history.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited December 2013

    Kathy I haven't yet, but I watched the video about DR. Susan Love. What a treasure. It seems I remember Voraciousreader directing me to her long ago. Don't remember the details, DUH maybe that's it LOL----it was in a time memory was an issue. Anesthesia/chemo(overdose)/pain and chemical imbalance brain issues. Reading and retention was a big issue for a very very long time. 2009 I could hardly read a paragraph and retain anything.

    I'm excited based on her video, methinks someone will be sending instructions for a blood draw or cheek swab :) and to fill out questionnaire.

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