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Old 02-12-2008, 12:04 PM   #10
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Who's positive?

Dear HavahJ,
You're wrong if you think "we all stay so positive". It is a daily, even moment by moment effort to keep that glimmer of hope alive and to focus on what IS (I am still living) in between worrying about the what if's (was that my last Christmas?). I can't even touch Flori's eloquence in expressing this, but I could sure relate to what she said.

You're not alone, although I sure understand why you feel that way. Even with support it is a lonely road. As for the unexpectedness I can relate: the diagnosis of extensive liver mets was completely unexpected following a pronounced "cure" of Stage 0 DCIS, then after 2 years of complete remission, I had dared to hope it would last forever - but it didn't. So now I'm working to get it under control again, hopefully for a long time. I still believe this is possible and for me, keeping that hope alive is important. In the meantime, guess what, I'm still alive and I choose not to spend ALL my time thinking about death. Because I'll sure feel stupid if I live another 20 years and waste every minute of it in fear and grief. Neither of us KNOWS how much time we have.

I agree with what others have said about seeking company of people who can relate, but if I were feeling as you do, I would also consider getting counseling from professionals who deal with this situation.

I really don't know what I can say to help how you feel, but I will share this. My husband and I were seeing the 2nd opinion doctor, reeling from the shock of the fresh diagnosis of extensive liver mets. He asked her "how can people live with facing this diagnosis" meaning, the horrific fear, grief, and everything else entailed. Her answer, in retrospect, was very wise. She said "you just do".

Your fears are valid, maybe you just need some help working through it.
__________________
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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