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Western New York Area

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  • kindone
    kindone Member Posts: 435
    edited June 2011
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    Good Evening Ladies,  I haven't been on alot lately b/c I have been busy.  We have a summer cottage in Silver Lake NY and we had a lot of water damage over the spring with all the rain.  We have mold on outside walls and now we have to gut two bedrooms.  So much work and money. We did so much work on it last year.  I just want to cry.

    I have to work the next two days and looking forward to Saturday.  See you all then.

  • heymoose
    heymoose Member Posts: 682
    edited June 2011
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    HI everyone,

    It looks like everyone had a busy holiday weekend.  Two days to our lunchon, see you all then.  Please pray for my friend, she was admitted to Hospice Monday evening.  I do not beleive she will be with us long.

    See you all Saturday.

    Hugs, Cheryl

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    heymoose, prayers going up for your dear friend, may she be painfree and surrounded with love.  hugs  Karen

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    kindone, so sorry to hear of all the damage, this spring with all it's rain really caused a lot of damage, I know all the farmers around me are just now able to plant.  Local fruits and vegetables will be very pricey, but the farming community was very hard hit.  Looking forward to seeing everyone at the luncheon, we've all been waiting for this day. hugs, Karen

  • bevin
    bevin Member Posts: 519
    edited June 2011
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    Kindone- omg as my daughter would say.. I feel so terrible for you.  thats a lot of work and expense.  Are you able to do most of it your self or do you need to contract out?

    Maureen- let us know how your hair consult went. 

    Cheryl- sending many prayers for your friend.  I am so sorry that she is not well. Hoping she is pain free.

    Take care everyone and have a great Friday.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    Good evening ladies.  Hope all is well. 

    Cheryl:  Prayers for your friend, hope her journey is painfree and comfortable.

    Betty: So sorry to hear about your summer home.  This year's weather has caused so much damage across the country.  Silver lake sounds beautiful.  Not sure where it is?  Hopefully homeowner's will help cover the cost of the repairs and you'll be enjoying beautiful weather at your home.

    So looking forward to this weekend.  I got my hair "cut" and colored.  The cut took all of 10 seconds but the color was another story.  That took some doing, but came out the same color as my wig and I like it.  The cut, well I went topless today, a little nervous because it was a funeral for a cousin who passed over the Memorial Day weekend.  No one knew me, not sure they would have anyway because not really close with these relatives but they all knew of the bc.  I guess bad news travels fast. My cousin's passing was okay, she has been ill for sometime.  I know she's in a better place.

    Love to all,

    Maureen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    Yeh!!!!!  Today is going to be a wonderful day!!! 

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    I let a friend on another thread know we were all finally meeting today, she thought it was just wonderful that we would have a super time. On half hour till starbeauty ( Esther) picks me up and we are on our way!!  hugs to all, Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    Hi Ladies,  Just a quick note to THANK YOU for the luncheon get together this afternoon.  What a wonderful group of women.  I am honored to spend time with each and every one of you.  It was so uplifting to hear wonderful stories of your family and friends.  I hope I'm included in the later category.  You certainly have become my friends.  I'd love to meet again in July or August.  Any suggestions?

    Starbeauty,  Thank you for the beautiful roses.  I smile every time I look at the vase.  What a great memory.

    Just gearing up for the garage sale next weekend.  The whole area has a two day garage sale and quite the event in our area.  After lunch, I went grocery shopping, then back to the basement to clear out stuff.  DH was dragging the stuff up and I'm looking through it and pricing.  Finally my DH said your getting tired, I can tell.  When I asked him how he knew I was tired, he said you started crying at all the books you read the kids when they were little.  I refuse to get rid of "The Little Red Hen or Mrs. Pigglewiggle, just can't part with the books.

    If you get a chance, check out Susan's blog, it's beautiful poetry.  Susan, you are so talented.

    Karen/Laura:  great to see you again.

    Betty/Ester/Heymoose:  I loved meeting you. Love the heymoose story :)

    Kind regards,

    Maureen

  • SusanHG
    SusanHG Member Posts: 455
    edited June 2011
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    Hi Everyone!  I've been trying to read over this thread since I'm a relative newcomer.  You guys are very prolific! ;)  I gave up 4 or 5 pages ago.  I had such a nice time yesterday afternoon meeting you all.  It is so nice to finally see real faces instead of computer avatars!  Ithink I will remeber you all.  Well, at least I remember everyone's diagnosis and real names.  Looking forward to joining the conversation and meeting again. 

    Maureen:  Thank you for the compliments to my writing.  It is so nice to get feedback.  Writing is lonely work with very little benefits.  I will be in Europe until July 11th (my husband is French, so we will be visiting his parents and doing a small trip to Belgium), but would love to meet sometime after that. Hope work goes well tomorrow.  You're hair looks great.  I love the color!  So, i'd say no wig and be comfy for the summer(and cool!)

    Cheryl: Thank you for bringing us those beautiful roses.  I brought home a yellow one. It's gorgeous!

    So nice to meet you all!

    Susan

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    Thank you for the compliments Susan! Have a wonderful time in Europe.  I'll make a note for post July 11th.  I'll be pretty busy as well.  Booked with college and high school graduation parties every weekend till July 16th.  Good thing I'm returning to work. LOL.

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    Susan and Maureen, beautiful writing Susan, brought back thoughts and feelings I could not express as you did. I sent you my daughter's email address as she has been my compatriot on this unexpected journey.  These potent thoughts came to you at 2 in the a.m. in a semiawake state, it brought me to tears for this and the I am 42, which is her age.  It was so good to meet you and share.  Maureen, I will be away from July 15 to July 23, going to N.C. to visit my friend Sherry who you met.  My vote is to go to work with your natural hair, it looks lovely and reflects the battle you have been through.  Starbeauty, always good to see you, plus I got the bonus of driving time with you!  Coffee on the last week of June?  Laura, it was so good to meet you, I hope summer vacation comes real soon for you, Teachers Rock!  Kindone, Betty, what a joy to get to share with you, especially pics of Ava, may she continue to thrive and be grandma's girl as well as your grandson, who is grandma's boy.  Have a beautiful moldfree summer at Silver Lake.  Cheryl, heymoose, how kind of you to bring the roses for all of us, mine sits on my armoire in an antique amethyst vase, the rose is a light pink and it looks superb. Hope you had a grand time at the pigroast, yesterday was definitely an eatting day!  It was as beautiful day as I thought it would be, thank you Maureen for making it happen, I have a friend on the Quit Smoking thread that would like to join us on our next occassion, she visits her husband's relatives in Olean and would drive up to meet us, if that is OK with everyone.  hugs to all, Karen

  • 37antiques
    37antiques Member Posts: 60
    edited June 2011
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    Hi all,

    I'm not strictly western NY, I am in the middle of Rochester and Syracuse, but I was told to visit this thread and see if any of you girls could recommend a new group of doctors for me so I can get a second opinion?  So if any of you are near Rochester and could send me some suggestions, that would be great.  You can PM me so the thread doesn't fill up Wink

    Thank you!

  • SusanHG
    SusanHG Member Posts: 455
    edited June 2011
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    Karen:  I am so glad you could relate to my poetry.  Not only do I want everyone to understand the feelings that I felt, I wanted to reach out to survivors as well.  Thank you for the compliments.

    Sue:  i am near Buffalo, so I would recommend Roswell Park Cancer Institute, but that would be quite a drive for you.  i think I've seen you on other boards, haven't I?  I had DCIS and a 3 mm invasion.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    HI 37 Antiques,  Susan is correct.  Roswell is National Cancer Institute closest to you.  Karen333 goes to Rochester, try and PM her or hopefully she'll be on the computer soon.  I worked with a private BS and Onc that were all trained at Roswell.  Bauer/Soniwala/Khalil (bs, onc and rad in that order).  The are located in Amherst, NY; a suburb of Buffalo. Guessing about a 2.5hr. drive for you.  What type of 2nd op are you looking for?  BS, onc, ps or rads?  I didn't have reconstruction so cannot offer an opinion.  Feel free to join our group, great group of women I proudly call my friends.  Good luck on your journey

    Maureen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    37 Antiques, had one more thought while ironing (LOL).  Gather all the recent tests/scans etc... so when you go for your second opinion they're not repeating everything 100 times, too much time will pass.

    Best of luck and let us know how you make out, prayers and hugs

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    Hi 37 Antiques,  On my P.M., I left out my Radiation Oncologist since I was not satisfied with his work.  Dr. Yellin could undoubtedly give you the names of RO he refers his patients to.  Karen  P.S. you are certainly welcome to join us on the WNY thread, it is a fine group of women both on the computer and in person.  We have met once this summer and are planning another luncheon later in the summer.  Karen

  • 37antiques
    37antiques Member Posts: 60
    edited June 2011
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    SusanHG, Yes we met on the boards before, tossing back and forth the question of water.

    Maureen and Karen thanks for the welcome!

    Well, I'm not really sure what kind of doctor I want.  So, for a quick poll- who is the head doctor in your tx's?  I was always under the impression that the Onc was the one in charge, but it doesn't seem to be for me, I have been getting the big shove lately and don't really know where to start.  But I have been working on getting all of my records together, so I guess I'll be armed and dangerous!

    My problems have nothing to do with reconstruction or anything like that, I'm just getting a lot of scans and referrals with no action.  I changed BS a while back, I don't know how the new one will work out, she told me to see my PCP. My PCP is an OB/GYN, so he sees something going on but it isn't his expertise, so he doesn't know what to do with me, he told me to see my Onc. My Onc tells me he works with a DX, but doesn't DX himself, see a neurologist (useless), rheumetologist (useless) and my hematologist.  My hematologist was my last hope, but when he started to refer me for yet another scan...so, who should the head man be?

    I travel an hour now for this fine medical team I have.  I'm thinking extra travel time might be tough, but it would be well worth it if I could get some answers.

  • starbeauty
    starbeauty Member Posts: 106
    edited June 2011
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    Maureen... Thx so much for putting our luncheon together... It was really relaxing.

    Karen... I enjoy talking to you... You make it easy.

    hey moose... The flowers were a real unexpected pleasure... and a nice reminder today.

    Kindone... Thank you for sharing your story... It helps to hear someone talk about all this BC stuff... And know that they have made it through it all and are back to living.

    Susan... I amso glad your rads are done...

    Laura... You are fun!!

    I needed that yesterday... Thank you all for your constant encouragement!

    Bevin and Pasha... We missed you.

    37antiques...welcome!!

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    WOW, sounds like a mess!!  While I was in tx, my MO ran the show.  When I finished tx. I specifically asked this question.  He told me to go live my life and let him worry about the cancer.  With that said, he said my PCP will follow care, always remind them of the bc dx. and if I'm not happy mention when I see him or give him a call.  My RO said the same thing.  The BS just dealt with the surgery end of it.  Can you take all the scans etc... to the MO and have a consultation with him.  Reason for asking, when I was dx, I was staged at a 2b, but the MO dx was 3a and what he says goes, period.  Any appt. or scans were set up by him/his office.  If you PCP "sees something"  who is he referring you to?  You shouldn't have to decide what to do, he should be referring you to someone. Other thought is to contact a national cancer institute and fax all information for a board review.  You should be able to call their 800 number and talk to a counselor or try the American Cancer Society.....oh and I'd drop those docs and tell them why.

    Good luck, let us know how it works out.

    Maureen

  • bevin
    bevin Member Posts: 519
    edited June 2011
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    hi ladies - I am so so sorry, I couldnt make it Saturday.  The day just got away from me as my childs meet went long. On top of that, getting ready for my MIL Birthday party at 4 left little chance of getting to see you all.  Its been a busy and stressful couple of weeks and still trying to work through all that happened too.

    Hopefully we can schedule another lunch/dinner and I can join then.

    It was a beautiful day today. Lots of swimming and sun.  Its hard to think about going back to work tomorrow. 

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    Dear bevin, sounds like you had a very busy day, you were missed, we are definitely getting together again this summer, so we can all get to meet you then.  I hope the rest of this month is soothing to you, you have been through a lot, only time seems to ease it. Antiques, Dr. Yellin has been the head of my treatment team working on the DX. with the Wende Logan Breast Care Center.  As Maureen said bring all your mammos and US with you.  I feel certain he will try to work you in soon.  No problem giving you the phone numbers, you'll have a head start tomorrow.  Karen

  • SusanHG
    SusanHG Member Posts: 455
    edited June 2011
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    Hi Sue! Yes, i remember talking about water and I remember you mentioned the Erie Canal??

    As far as how Roswell Park handles things, they are a little different.  When I go in to see them in November, I am followed by the team.  I first see the nurse practioner, then the surgeon.  I saw an MO once, but she pretty much told me I don't need chemo, so she doesn't need to see me.  She gave me some words of wisdom about lifestyle changes which were very helpful, but I don't take hormonal therapy since I am triple negative.  I think all e+ cases would then be followed by an MO because they would be taking something.  Roswell is nice because all the departments are intertwined and communicate constantly.  I just finished radiation and asked how many followups I will have.  They told me I can come in as often as I want.  Anything to make me feel more comfortable since it will be a few months until my mammogram in November.  I thought that was nice that they understood how anxious we get after diagnosis.  It will be nice to get frequent breast exams just in case.

    Another reason why I recommend Roswell is that they work in teams to make decisions.  When I first arrived there for a second opinion, there was a question about my chemo.  They gave me a consensus decision of which they all agreed that chemo would not be warranted in my case.  This gave me a good amount of peace of mind.

  • heymoose
    heymoose Member Posts: 682
    edited June 2011
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    Hi all you Western NY Beauties,

    It was so wonderful to meet everyone.  I had a great time and look foward to our next luncheon.  Maureen, your hair looked great and I hope you enjoy your first day back at work.  To everyone, have a great day and will check in later.

    Hugs, Cheryl

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2011
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    Hi All, 1st official day on-site.  What a warm welcome.  They decorated my office area with pink, white and blue streamers and welcome back signs.  Then they cleaned the area top to bottom.  I had a steady stream of people throughout the day with hugs and well wishes.  I was so humbled by the genuine concern and happiness.  Light meeting schedule and lunch dates the rest of the week.  Busy, but a very nice busy.  Oh, I went topless, had my head rubbed like a dog several times (LOL).  Thank you everyone for the confidence to topless.

    Bevin,  we missed you too!!  We will get together really soon and would love to have you make the next date. 
  • kindone
    kindone Member Posts: 435
    edited June 2011
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    Good evening Ladies,  It was so nice to have a face to place with your names.  I really enjoyed our get together and hope to see you all again this summer.

    Maureen,  So glad you had a good day back to work, your coworkers sound great and supportive.

    Bevin, Sorry you couldn't make it, and for all your going though. Looking forward to meeting you next time.

    Susan, your writing is so beautiful and deep.  I enjoyed reading your blog, very inspirational.

    Hay moose, Thank you for the rose, I took the coral one, its holding up great.  So glad we meet.

    Esther, Karen and Laura, Maureen, Susan, Hay moose, Bevin We are quite the WNY group, Glad we found each other.

  • SusanHG
    SusanHG Member Posts: 455
    edited June 2011
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    Glad we found each other too, Betty! 

    Maureen-Glad you had a great first day back!  Sounds like it was fun!

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    Hi Maureen, what a wonderful first day back, you were truly missed!  Enjoy all the lunch dates.  See you soon, hugs Karen

  • heymoose
    heymoose Member Posts: 682
    edited June 2011
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    Hi Everyone,

    It is with a heavy heart that I am sending you this post.  My girlfriend Sandy passed away this morning.  I am happy she will not have to suffer or be in pain any longer.  However, I will miss her very much.  Please keep her husband in your prayers, he is going through a very rough time.

    I hope everyone is doing well.  Have a nice evening.

    Hugs, Cheryl

  • karen333
    karen333 Member Posts: 2,037
    edited June 2011
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    Dear Cheryl, I am so sorry to hear of your friend's passing, this is truly a dreadful disease.  My thoughts  and prayers are offered for both you and her husband.  May you both be surrounded by love during this time.  hugs, Karen

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