When it's time, you know...

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RayGirl
Posts: 1282
Joined: Wed Jun 16, 2010 4:21 pm
Location: Texas

Re: When it's time, you know...

Postby RayGirl » Fri Mar 30, 2012 7:12 am

Another hug for today. I am so grateful I got to give you one in person too.

mymom
Posts: 1299
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: When it's time, you know...

Postby mymom » Fri Mar 30, 2012 8:05 am

You have and will continue to be an inspiration to everyone on this board.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED
6/22- small spot liver again, ablation oct 2023

rp1954
Posts: 1857
Joined: Mon Jun 13, 2011 1:13 am

Re: When it's time, you know...

Postby rp1954 » Fri Mar 30, 2012 8:39 am

Thank you for your insights, Pat. You've enhanced and enriched the lives of so many by sharing.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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abuttigi
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Location: SE Michigan

Re: When it's time, you know...

Postby abuttigi » Fri Mar 30, 2012 8:54 am

Hi Gaelen,

I, too, admire your many contributions to this board. You've encouraged me to think outside of the box and consider options and perspectives other than my own. I wish you peace during this next stage of your journey.

Angie
Daughter to George (64)
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven

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Terry
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Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: When it's time, you know...

Postby Terry » Fri Mar 30, 2012 8:55 am

That's pretty much how I feel, when the chemo no longer works I'm done, OR if I can't take it anymore. I'm off it for now and I'm staying off (which they may not like) until after the nose tumor is radiated. So we're kind of similar in some way. Shocking huh;)

This can change so quickly. My family is all like you were great a month ago. Really, no I wasn't you just really weren't listening, but I was a lot better than now. Your right things can change VERY fast in our stage IV bodies.

I wish you controlled pain Gaelen and I hope you and pray you don't have to listen to a bunch of bickering from your family. I hope they at least take it away from you on their own so the nurses to have to make a deal of it and you don't have to be upset.

I'm sure we'll here more from you for a while so I'm not saying good bye yet.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

Staci's team
Posts: 386
Joined: Fri Sep 25, 2009 9:43 am
Location: Canfield, Ohio
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Re: When it's time, you know...

Postby Staci's team » Fri Mar 30, 2012 9:03 am

I share the sentiments of so many others who've posted before me. I appreciate all that you have done for this board and its members, the colorectal cancer awareness effort in general, and the world of scientific knowledge you impacted during your career. The combination of your thoroughness in posting here and the realism with which you've faced this journey is something I've admired.

You have long been clear on your plans as a Stage IV patient, and have generously shared the importance ranking of what factors you consider in your overall experience. While I'm sad to hear that it's time to put it into motion, I'm glad to know that such decisions were thoughtfully made and that you can be at peace. I wish you freedom from pain and the ability to enjoy as much as you can.

My strongest thoughts, Gaelen.


Chris
Husband to Staci, diagnosed at age 32
Clinical dx Stage II/III rectal cancer, 7/2009
APR surgery 11/09 leading to...
Pathological dx Stage IIIB, ypT3N1M0, 11/2009
http://www.caringbridge.org/visit/staciwills
Member of The Colon Club's Board of Directors

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pollo65
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Facebook Username: pollo2
Location: central valley, calif

Re: When it's time, you know...

Postby pollo65 » Fri Mar 30, 2012 9:36 am

Gaelen,
You have been and continue to be an inspiration for all of us on this journey.
pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

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Aughhhh
Posts: 221
Joined: Sat Oct 27, 2007 12:35 pm
Location: Portland, Oregon

Re: When it's time, you know...

Postby Aughhhh » Fri Mar 30, 2012 9:52 am

Gaelen,

Thank you so much for the comforting, inspiring and dignified post. I wish you a painless path on your final journey.

Peace always,
Pam
Stage IIA (T-3,N-0,M-0), sigmoid colon cancer, Diagnosed age 43 on 8/19/03, sigmoid colectomy on 8/30/03, finished 22 rounds of 5-FU & Leukovorin on 6/8/2004. Currently NED!

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: When it's time, you know...

Postby Bev G » Fri Mar 30, 2012 10:28 am

Our Pat,

I am heartened a bit in writing this, because I know you won't read it if you don't feel like it, just one of the things I admire most about you. I'm sure you noticed (if you're reading) the presumption I used in referring to you as "our Pat". Sorry, needed to. You were the first one I learned an important lesson from on the board >2 years ago, and I know many could say the same. Dozens have already commented on everything you have contributed...and many things we only learn about stumbling along our way (ie your recent award, which you had typically, humbly not even mentioned).

Clearly, you are a most extraordinary woman, in so many ways. I was trying to think about all the ways you have have influenced me; sometimes in a reassuring way, sometimes in a really thought-provoking way, sometimes in not such a great way, but probably necessary none the less. I have never once considered reading any of your posts a waste of time, and that's saying a lot. So, I looked up "pragmatic" on Wiki (or at least I think I did)--and nothing...just a photo of you, then "brilliant"...there you were again, then "credible"...yup! "ballsy"...there again, "compassion; NOS ( :wink: )...YES! giving and giving and giving, then patiently trying again, and giving some more...you again (ho-hum) trailblazer....yeah, that, too. You will live on in history, here, in DC, in NY (at home and at MSKCC)...on your blog and in your cooking and in your dogs and in your research and the other thousands of places you have touched, and likewise in the thousands of people who know and love you, and admire you so much.

Who can escape the irony of you and Terry sort of in the same place at the same time. Having both been on the stage IV train and finding yourselves at somewhat at the same destination, though having gotten there through quite different routes and philosophies---yet you both arrived with tremendous grace, and apparent great peace. It surely wasn't a race, and the "finish" line could never have come too late, and it's not all over, but sheesh! Isn't it incredible that we can chew up "positive attitudes" and their benefits, and "pragmatic attitudes" and their benefits, and at the end of the day, we are where we are anyhow.

Then; the other thing: What's after? I fully respect your thoughtful beliefs about these issues....I believe they can be accurately stated as "this is it, when this is done, it's all done". I apologize if I have not adequately interpreted your thoughts on this, and I'm certainly not trying to head this in any particular direction. I just wanted to say that on this one, I think (and hope) you are wrong. Perhaps you'll "know" the truth sooner than some of the rest of us, perhaps not. I hope you will be pleasantly and peacefully surprised (by joy). If you are, no harm done! If you are, I'll be so happy and so gratified to see you There one day. I couldn't have been happier than when getting the chance to meet you in DC---deyanu. One more time would be superb.

With all of my respect, admiration and thanks.

Namaste,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

SunGold
Posts: 133
Joined: Sun Aug 21, 2011 11:56 am

Re: When it's time, you know...

Postby SunGold » Fri Mar 30, 2012 10:32 am

Thinking of you and wishing you peace, Gaelen.

Sungold.
Caregiver to DH,42 at Dx 8/11 mCRC Stg 4 liver mets
Surg/Rad not option.
Xel+Oxi 8/11
Tumors shrink
Oxi end 2/12
Radiatn 3/12, V.tough
5/12-Incr in liver mets,possible lung mets, no surg.
5/14 Folfiri+Erbitux
June 2012 - Passed away, Gone too soon.

Beatrice
Posts: 143
Joined: Fri Jan 06, 2012 9:17 pm

Re: When it's time, you know...

Postby Beatrice » Fri Mar 30, 2012 10:44 am

I admire your courage , your wisdom and strength in this time .
I admire your compassion to share all this with us .
You are an inspiration , may God bless you and ease the time ahead.
Beatrice
caregiver to Richard ( stg IV)
1993 CC,, resect.,chemo ,rad
NED -> Dec 2008
2009 bladder met, resect, Xel
NED -> Nov 2011
met lung( inop.)
Folfox + Ava Jan -Jul 12,
Sep12 Avastin-met stable
Apr 13: progession lung
Jun 13 : progression

Deirdre
Posts: 613
Joined: Mon Sep 06, 2010 7:10 am
Location: Ireland

Re: When it's time, you know...

Postby Deirdre » Fri Mar 30, 2012 11:01 am

Gaelen/Pat

Your post made me cry. In his honesty, strength and absolute clarity but most of all courage. I wish I had even a tenth of your strength. Your clear and determined approach to everything in life is now more apparent than ever at a time, when many of us wouldn't be able to muster up any. And here you are, educating us again. I wish you continued strength and that you will truly know how much your presence, knowledge and clarity of thought has affected people and made them look at the way they do things. Thank you

D
Daughter of loving dad, dx Stage IIIC Mar 10
Resect Apr 10. 1 lymph nodes positive
Heart history has ruled out treatments
NED to date!

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Lena
Posts: 165
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Facebook Username: Lenarnc
Location: Kentucky

Re: When it's time, you know...

Postby Lena » Fri Mar 30, 2012 11:38 am

Gaelen, you are such an inspiration! You are in my thoughts and prayers.
Hugs,
Lena
Dx rectal cancer July 30, 2009
Power port placement Aug. 3, 2009
Chemotherapy/Radiation therapy stated August 3, 2009
Chemo/radiation completed October 4th 2009
Proctocolectomy with Ileoanal jpouch November 3, 2009
NED 2014
Stage 2

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crabbymonty
Posts: 152
Joined: Sun Feb 07, 2010 12:38 am
Location: Dallas, Texas
Contact:

Re: When it's time, you know...

Postby crabbymonty » Fri Mar 30, 2012 12:43 pm

Whether here or in your other writing venues, I have followed your wisdom and always found myself nodding (in agreement) as I read.

Good luck Pat,
my wife dx 2009/sept low rectal@age 32
2 mnths ChemoRad
APR srgry w/perm stoma 2010/jan
failed rectal stitches=open wound :-(
6 months chemo
NED 2010/july
lung mets dx 2011/jan
18 mnths chemo
Clinical Trials 2012/sept
hospice oct31
Peace nov5
kids 6&7

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Jen
Posts: 481
Joined: Thu May 22, 2008 10:22 pm

Re: When it's time, you know...

Postby Jen » Fri Mar 30, 2012 1:31 pm

Gaelen, you are one of the sages here that I have learned so much from. I know you are not into flowery terms, but you have always handled your journey with grace. You remind me of a friend who says 'always own your own s**t!" Own every bit of it, figure it out, face it, deal with it, put it in it's place and carry on. At times I have rallied against your views, but you have always spoken in truths, and not the falsehoods of commiseration. I came here lost after diagnosis, but then people like you showed the way to living well regardless of the obstacles in life - I find your mindset very evolved. Your knowledge and experience has been far reaching and another thread in the fabric of our lives.

Keeping you in the light.

Jen
2008 March 37th Bday DX :( T3N2M0
3C Rectal Cancer, 5cm tumor, 4/33 nodes positive
28 tx IMRT Radiation, 12 tx Folfox, 1 month Xeloda
5 years NED 3/14/2013!


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