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Old 06-09-2007, 01:32 PM   #1
Joe
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Location: Home of the "Flying Tomato" Carlsbad, CA
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Sandy H - Patient Advocate

Although most of us are familiar with Sandy's activities on this website, there is another side of Sandy that few knew about.

She was an active advocate for IBC breast cancer and performed considerable phone support for newly diagnosed patients in New England. Sandy was active not only with the HER2 Support Group but with several IBC internet groups and several local bc support groups.

We were proud to invite Sandy to accompany us to the San Antonio Breast Cancer Symposium in 2004, 2005 and 2006. I will always remember Sandy's need to hurry home to share the knowledge gained at SABCS with her oncologist and local support groups. Living in rural Maine, meant that she sometimes spent 12 hours traveling each way to San Antonio. Sandy absorbed all of the information that was presented.

What I will always remember about Sandy was that she was one of the last of the "old fashioned" proper ladies of the past, homespun with traditional values She was extremely personable but also very humble. We first emailed Sandy in 2004 requesting her to call Christine as we had something important to discuss with her. She did return our call and feared that she had somehow done something improper on our website, otherwise why would "The Christine" ask her to call. In reality we were inviting her to attend San Antonio with us.

Sandy will always be with us at each meeting and each symposium that we attend. We will also be increasing out outreach programs to give everyone who wishes the opportunity to be a true patient advocate.

Warmest Regards
and
Hugs

Christine and Joe
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Old 06-09-2007, 02:00 PM   #2
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Wink Oh Joe

Thank you for that post. I got goose bumps. I think because your depiction of Sandy H touched me with a recognition of her true Spirit. You speak of calling her and her sweet timid reaction. I did not know her, but I feel I do w/your words and those of Steph and others. I feel her presence at this very moment as I type, as if my Soul called out to her and she so sweetly and characteristically responded. A simple little caveat that is so meaningful. With bc has come my new awareness of the profundity within the little things. Seeing the sublime in the ordinary, and relating so immediately, as it strikes a chord. You're the best in so many ways, Joe. Can't say it enough... ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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