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Old 01-30-2009, 06:13 PM   #8
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Just well meaning ignorance

I've heard some doozies...and how I respond depends on how well I know the person and to a certain extent, what I think they want to hear. Or what I feel like saying.

Most people say that stuff out of ignorance, combined with actually wishing you well and sometimes with a dash of wanting to think it will all be okay because they themselves are fearful.

With casual acquaintances, I see it sort of like most people say "How are you" but they really mean "hello" and expect to hear "I'm fine". So I say that. Sometimes even when I know they want to hear "the truth", if I don't want to discuss it, I just say "I'm fine". or if I'm feeling really wacky, I'll say "still above ground!". That usually leaves them wondering!

Sometimes, if they sincerely ask me one of the hard questions, like "are you cured", I'll give them the best honest answer I can without breaking everyone's heart.

Seriously, I've had some very good friends say some really ignorant things...like how they always wanted to die before their spouse, too. Although that one shook me up pretty well, right after my Stage IV diagnosis, I really had to chalk it up to I know she meant me well and was coming from a place of love...and then something really stupid came out. I even made a pact with a group of very good friends who were worried they'd say the wrong thing that if they ever DID say the wrong thing, I'd just respond "I know you said that out of love". Because it would be true.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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