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Old 03-29-2013, 02:51 PM   #18
CoolBreeze
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Join Date: Dec 2009
Posts: 562
Re: Haven't been on this board for nearly 3 years

Since you asked "what do you think about this" and I see nobody with mets except me has responded yet, I will add: I am sick and tired of the pep talks I get constantly from everybody around me. They are not in my shoes, don't know what I deal with, cannot possibly fathom what I am going through. No pep talks! She is allowed to understand reality and feel bad from it. She will soon begin mourning her life and that is hard. Her career dreams, her dreams for children...all gone. She will be very sad about that - it is very hard when your future is taken away.

Don't deny her reality, which is that she is going to die of cancer, and sooner than later. Ten years would be a long time considering she has it in her bones, lungs and liver. When you say to your daughter "don't plan to die" you are essentially telling her that you don't want her to face the truth.

Because of course she has to plan to die. She will have to do paperwork, wills, legal things. She may want to plan her funeral or arrange it ahead of time. There is a lot of mental preparation that comes with this diagnosis too.

You can simultaneously live with hope that you have more time but knowing that there is no cure.

Far too many people want to tell you (me) it'll all be okay, and that is for THEM, not for you (me). Sure, it'll be okay. After I'm gone, the sun will shine, the squirrels will play, my dog will slobber on bones, my sons will get married......life goes on. But it will go on without me. We mourn that and we should.

Kiri sounds like a straight-forward, practical girl. She is facing reality. If you want to be in her life, you are going to have to face reality with her. So go to the appointment and hear what the doctor has to say. Really listen. I think, being a mother myself, it'll be the hardest thing you ever have to do. Just be very careful about pushing away reality because she doesn't sound like the type that will feel supported by that. She, like me, may feel supported when people acknowledge the gravity of what we are facing.

And, try to live each day you are given with her. It can be a beautiful time if you let it. She probably won't start feeling really bad from all these chemos for a while so now is the time to take trips, etc. Everybody is different but 2 years post my mets diagnosis I can't do much and I sleep most of the time - I wish I'd gone on a family trip when I first heard.

Again, I'm so sorry you got this terrible news. Be strong.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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