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Old 04-03-2007, 12:13 PM   #1
Joy
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Location: Ft. Collins, Colorado
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so much has happened

Wow you guys, I can't believe what has gone on in the past few days that I was gone. StephN, I'm so sorry about your family struggles and I am thinking of you all in the very best and warm ways. Sandy H. I had no idea that the tykerb was already a problem-what happened? Are you on xeloda still. How about the Doxil-I hope that does a number on those dumb mets!!! Esther-what the heck? I hope that new spot gets put in its place pronto and that the mercedes is driven into the ground, BY YOU! If anyone can... Rendi, I hope things get decided and go smoothly and successfully. And to everyone else out there I'm thinking of you and hoping only good things are happening.

I was on a vacation for 5 days and I didn't think about cancer once,not once. I have never done that- EVER in the past 7 years on vacation or otherwise. I didn't have random aches and pains that worried me either-nothin'. I can't tell you how liberating that was. I felt like a happy, normal (well-you know) person. When I walked through my front door Sunday night tears fell out of my eyes because cancer was the first thing I thought of and it hurt. How can I get to that place of just not thinking about it at all on a daily basis? It is obvious that I have the power, cause I did it, but how do I do it at home? Anyway, I'm having a hard time adjusting to reality and am concerned for so many of you in your realities.

Love to all of you!
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 04-03-2007, 12:54 PM   #2
chrisy
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Joy,
You are such an amazing person - and so aptly named. I always look to you for hope and encouragement, and I see your strength in the face of all the sucky things. And that great sense of humor.

So, you proved to yourself that you can have a true 'cancer free' holiday! Thats terrific. It is incredible how a change of environment can effect such a dramatic change in your outlook. The old picture I had on here was a year ago when I had the same experience - a vacation where I somehow forgot all about cancer. It really is liberating. Sorry you felt slammed in the face when you opened that door to your home - the very place you should feel safe and loved.

I certainly don't have the answer of how to not think about it AT ALL on a daily basis - I'm not even sure that's a good idea. But maybe we can find ways to box it in - or out. Maybe create a room or a space with a big "NO CANCER ALLOWED" sign on it. A cancer-free zone. Maybe create times during the day that are like that. Sure sounds easier said than done, I know!

Or maybe I'll send my friend Pat over to see you - her daughter is at school in Ft. Collins. I guarantee you Pat will make you forget ALL about cancer (but you may need to change your name and leave town!)

In the meantime, I know you know that part of your reality is how many people love and care for you, including us here. Try wrapping that reality around you.

Take care
Chris
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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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Old 04-03-2007, 02:22 PM   #3
Carolyns
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Joy,

First let me say that I am so happy that you had a GREAT vacation. I hope that you got lots of comments on your sassy new hair style.

Regarding how you feel at home, I was just asked that same thing by my spiritual / yoga instructor. I told her that I feel like cancer / cancer-land at home and I forget about cancer on vacation. She said that I really need to work on that. I know that I do but I don't know what to do. I love my home but it makes me think about cancer. Great observation. Let me know what you figure out.

Love, Peace, Hope and Gratitude,
Carolyns
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Old 04-03-2007, 02:33 PM   #4
KellyA
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Joy,


I am sooo happy that you were able to really enjoy your vacation. What a wonderful thing. I long for a day (just one) where I can do that as well. You are such a positive person- don't be too hard on yourself. I have begun a new ritual every morning when I first wake up where I say aloud all of the things I am grateful for and blessed with. The blessings way outweigh the negatives and start my day out in a wonderful way. By the time my feet hit the floor to get out of bed, my outlook is very good (I have to lock my door though so I can do it without one of my brawling boys killing the moment :-) ). During my Yoga class, I imagine a giant eraser and pretend that it is erasing all aches and pains and bad thoughts. That works too. I go through alot of erasers, though. :-)

I will say a special prayer for you that you have endless vacations!

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 04-03-2007, 02:58 PM   #5
Emelie
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Change of scenery

So glad you had a great vacation! I am also glad to hear that there can be a time when I don't think about cancer. Thank you for sharing the hope that it can be a reality! I am in bed today trying to heal quickly from the MRM I had on Thurs. and I spend a lot of time on the internet looking at real estate in Denver. I am hoping the move there will be my vacation from cancer.
Keep smiling Joy and thanks for sharing your news.
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Old 04-03-2007, 02:58 PM   #6
naturaleigh
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Joy,

You are such a great inspiration to me and everyone else on this board. Personally, I think your doctor needs to prescribe something else. . .

More Vacations!!!
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er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 04-03-2007, 03:46 PM   #7
Mary Jo
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Smile

Oh Joy - you are such a sweetheart and as Chrissy said "so aptly named." You really are such a blessing to this board.

First off I want to say that I am so happy you had a relaxing and stress free vacation and you did not think about the "C" word even once. Now that is SOOOOOOOOOOOOOO awesome. Now for the second part of your sentence and your question as to how NOT to think about the "C" word at home. OHHHHHHHHH, how I wish I knew the answer to that one. I guess if I did I'd be the million dollar lady, huh? BUT, what helps me through this "new normal" I live with is to pray often. That is my first and foremost priority of each day. Then I remind myself often (a million times a day sometime) that the only thing I do have control over is how I live my life. I can CHOOSE to be happy - CHOOSE to be positive - CHOOSE to be their for others - CHOOSE to be thankful for the life I've been given - CHOOSE to even be thankful for this road I walk. Even though it is scary OFTEN TIMES - even though it is DEPRESSING many days - it has taught me much. God has been and IS good to me. My life is what it is and I will rejoice in it for this is the Day the Lord has given to me and I will NOT LET cancer take that from me. I will rejoice - smile and grab a hold of today. Tomorrow isn't mine yet and only He knows our tomorrows so I will TRY and leave it with Him.

So Joy take that for what it's worth. It's hard, I know (as do we all) but we can CHOOSE JOY and darn it I'm going too. You want to join me???????????????????????

Thanks for your post! As I said before you truly are a JOY to all of us.

Love and hugs,

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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