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Old 06-15-2009, 10:29 PM   #22
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Marie,
I was going to post this offline to you, but I decided that the rest of the "family" could hear it too because this belongs to all of us, not just to you (even tho you ARE the most special , although don't tell because I've told others THEY are the most special and I meant it then too).

Whatever you decide to do, do it for yourself and for Ed and do not feel that you need to hold back or protect us from your fears, sadness, anger or whatever it is you are feeling.

If you can't share it here, where else? We all know this is not Disneyland even though at times it is the happiest place on earth as we are able to share hopes, joys, victories and even a full forum where we can "keep our minds off cancer".

This is a place to share encouragement, both in the form of emotional support and in the remarkable research discoveries that unfold daily. This is a forum that does push people to continue the fight, and provide information and weapons to do that. I believe it gives people the courage to keep going, further than they thought possible. And that is a good thing (although even that drives some people away!)

We are a family by choice - none of us chose to live with breast cancer, but we do choose to be HERE. We call it a forum but it is really a haven.

To be a true haven, it must be safe to come no matter what you have to say, or feel. Even, and especially, when you are on the brink of despair or worse. It's like the old saying, "home is the place where, when you have to go there, they have to take you in". Well, HERE is the place that, when you have to stand against your fears, we have to stand with you.

We do self-censor because we are lucky enough to "live" in a family that includes those who are likely to be cured as well as those who just hope to outlast the devil while stretching for that cure that's just around the corner. I am so grateful to this family, because I couldn't bear to be in a "stage IV quarantine". But I think we do a disservice to ourselves, (and to those courageous "early-stagers" who stay and love us and look us in the eye EVEN THO we represent their worst nightmare) if we don't show it all.

Marie, we are here to honor and help you and MO in whatever you are facing, whatever choices you are making. We of course care deeply what you are feeling and can't help praying and hoping and crying with and for you. And I, for one, would feel deeply cheated if you held back because you were afraid of depressing ME.

All my love,
Chris
__________________
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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