Gaelen's FCR Post (You will cry.Warning)

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lydia123
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Gaelen's FCR Post (You will cry.Warning)

Postby lydia123 » Wed May 09, 2012 6:31 am

All,

Gaelen has written a lovely post about her declining health. It is a beautiful piece and worth the read, but I warn you that it will make you cry. She has taught me so much about facing life's lemons with grace, and bravery.

Gaelen's piece:
http://fightcolorectalcancer.org/policy ... the_bucket

And the website more generally for a great organization:
http://fightcolorectalcancer.org/

We love you, Gaelen.

Lydia

(edited because my link wasn't perfect!)
Last edited by lydia123 on Wed May 09, 2012 6:41 pm, edited 1 time in total.
lydia123
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

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elissa
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby elissa » Wed May 09, 2012 7:38 am

Wow....and cry I did! So heart wrenching and beautifully written. My thoughts are with you on your journey, Gaelen.
Elissa
Wife of John, 52
Dx cc 9/3/10; Stage IV
14/25 LN; 2 liver mets
Lynch: MSH2; KRAS mutant
Colon resection 9/9
Various complications
12 rounds of FOLFOX/FOLFIRI
was called home on 4/30/11

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Gaelen
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby Gaelen » Wed May 09, 2012 8:27 am

Thanks, Lydia and Elissa.

One of the things that always bugged me in threads where someone announced going on hospice or a passing is when one of our members would thoughtlessly post something like "hospice? But they were just posting a couple days (weeks) (months) ago." Some people truly do not understand (or maybe, accept) thatwhile death may not immediately follow decline, decline from functional to not can happen freakishly fast. I know this, and was still caught a bit off guard. It's always concerned me that someone in denial just won't get it fast enough to respond appropriately.

Anyway, when I got the question - sure, I don't want to give up my big dreams. But it's the divine ordinary things I can no longer do that I miss most.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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CheeseHead
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby CheeseHead » Wed May 09, 2012 9:52 am

Gaelen,

Beautiful post...

In the greatest cancer race, hanging on until the next new thing becomes available, I didn’t quite make it to the finish line after eight years of trying.

Totally true... and it's the path a lot us go.

I'm still fairly active myself and cannot imagine not being able to get up and walk - even after surgery and chemo, I could at least look forward to improvement. Knowing there won't be any must be very tough to accept.

Thank you for showing us the other side of the "out of options" door... and hoping you will have lots of good, pain-free moments.

All the best,
Cheese
    2008
    10 Stg 4 colon srgry
    12 Xelox/Avast
    2009
    05 Liver srgry
    -12 Xelox
    2010
    05 Xelox
    08 Iri/Vect
    11 Liver srgry
    2011
    01-05 Iri,Vect,Xeloda
    09 CyberKnife
    2012
    03-07 Ph I trial
    08-11 Regorafenib
    2013-
    Xeloda
    Vecti
    Iri
    Xelox

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Jen
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby Jen » Wed May 09, 2012 10:44 am

Dear Gaelen, your words are so beautiful and tug at my heart. I am training to become a hospice volunteer and your words will help me. I want to take the time to read through your other blogs because there is a lot to be learned. You have dealt with it all. You are a navigator and a guide who has always shown light on the path ahead.

hugs
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!

KimT
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby KimT » Wed May 09, 2012 10:57 am

What I like most about you Gaelen is your willingness to be frank about this disease. You often say the things that no one else is willing to say. I wish I had that kind of courage. I find myself watering things down, especially with my family so as not to worry them. Your honesty is paving the way for the rest of us.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

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Guinevere
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby Guinevere » Wed May 09, 2012 11:15 am

Gaelen wrote:...But it's the divine ordinary things I can no longer do that I miss most.

This is what got me for you, Gaelen! Wanting to do something so seemingly simple as laundry and being unable to do it. I hope the fish bring you a blessing!
You posting on the swiftness this disease can take and, also, Ise's Pete's death, have been a very sobering reminder of the unpredictability of this crazy hateful disease. It's certainly gotten my attention and made me kick myself into gear and get the necessary paperwork done and have all the necessary conversations. Thank you for that as well.
Thank you so much for sharing even more of your journey. I do pray for you and your comfort.
God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

livingbyfaith
Posts: 430
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby livingbyfaith » Wed May 09, 2012 11:20 am

Great post. I talked to my cousin yesterday who earlier this year lost her husband to pneumonia after being declared NED of lung cancer with brain mets. She said he was doing so well, just needed to rebuild his strength and just like that gone. A lesson to all of us. I try to enjoy every day with my husband to the fullest as I too know what could happen suddenly. Each day is a gift that we treasure. God bless all the members of this group that are so helpful and caring.
Hubby 72 cc
Resctn colon 07 stage 3/11 15 cm liver met CEA 3000+
CPT 11, 12 xelox kras wild gall blddr rem 7-12 & abltn
liver stents bi-mo gilbert lng mets , cpt-11 3-13, 2 hernia surgeries2013 & liver abltn went to heaven 10-24-13

Lee
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby Lee » Wed May 09, 2012 12:19 pm

Gaelen,

I read this thread with saddness (and a few tears). You, like Terry, continue to be in my thoughts and prayers. I pray that you will have enjoyable days even if that just taking care of a fish.

(((HUGS))) to you,

Lee

PS I love Betta fish, I used to take care of my daughter's after she moved out. They have true personalities.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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surfingon
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby surfingon » Wed May 09, 2012 12:48 pm

Dear Gaelen,

Back in February, you wrote in response to my description of my dear husband as he faced his own death:

All I hope is that I can be, as surfingon described it, "graceful and open-eyed and peaceful" enough inside when I have to be in that place again that I can make the choices I need to make calmly and not driven by angst or pain.

You're there, my friend. Bless you for reminding everyone on this forum that death does not have to be a surprise and that fighting against its inevitability until one's last breath may rob us of the peace we so desperately seek.

The woman hailed as "the new Kubler-Ross" (Kathleen Dowling-Singh, The Grace In Dying) charts 3 stages of the dying process: chaos, surrender and transcendence. She believes that we all get to that last stage, but for most, it lasts for just a brief moment. It is only by doing our inner work that we have the opportunity to rest in that state for an extended period. You have done that work. You are the epitome of graceful and open-eyed.

Wishing you transcendent peace,
Rachel
Last edited by surfingon on Thu May 10, 2012 12:41 pm, edited 1 time in total.
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com

shmurciakova
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby shmurciakova » Wed May 09, 2012 3:21 pm

Hello Pat,
I just wanted to let you know that I am thinking of you. I really hope that your new fish friend brings you joy. We used to have a beta male and a couple of females at work and I think I was the only one who really paid much attention to them. They would get so excited every day when I would come in and I would talk to them and made sure they were fed. They really have cute personalities and are very beautiful. I hope that yours brings a smile to your face as much as those did for me.
When I was in active treatment at MD Anderson I always used to admire their "puffy faced" goldfish which they seem to have strategically placed around the hospital. They have a very calming effect.
I always have thought that when I am at the end of my life I hope that I can at least have a bird feeder nearby so I can watch the birds.
Take care,
-Susan H.
diagnosed at 31 in 2002, Stage IV
Sigmoid colectomy - 6 mos 5-FU/Leukovorin
liver resection - 6 rounds XELIRI (xeloda/irinotecan)
lung wedge resection Oct. 2004 - no chemo
NED!!

shellfry
Posts: 82
Joined: Sun Oct 16, 2011 8:41 pm

Re: Gaelen's FCR Post (You will cry.Warning)

Postby shellfry » Wed May 09, 2012 3:48 pm

I can't find the post. I clicked on the link and it just takes me to the homepage but I don't know where to find it from there
Michelle
Stage III Colorectal Cancer
2 lymph nodes involved
Resection Sept 2010
5-FU, Leucovorin, Oxiplatin
radiation
chemo complete May 2011
radiation complete Dec 2010
Port removed June 2011
permanent colostomy 9/2012 due to
complications from radiation
April 2015 Total Pelvic Floor Reconstruction

disco nap
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Joined: Sat Aug 07, 2010 10:45 am

Re: Gaelen's FCR Post (You will cry.Warning)

Postby disco nap » Wed May 09, 2012 4:13 pm

The brighter the star, the faster it burns out.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Jan 2023 - still NED.

jens22
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Re: Gaelen's FCR Post (You will cry.Warning)

Postby jens22 » Wed May 09, 2012 4:29 pm

Gaellen, You continue to but your mark on Colon cancer. You never stop educating us all. I work with many people on hospice...some graduate...most don't. You were smart and made your own descions. It's funny that you chose a Beta...The Chinese fighting fish. keep pain control your number one priority.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

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Jack&KatiesMommy
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Location: Columbus, OH

Re: Gaelen's FCR Post (You will cry.Warning)

Postby Jack&KatiesMommy » Wed May 09, 2012 5:10 pm

Oh Pat....I have no words. You are beautiful.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,


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