January Blog - When is Enough, Enough?

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January Blog - When is Enough, Enough?

Postby NWgirl » Tue Jan 06, 2015 7:16 pm


Link above to my January blog, "When is Enough, Enough?" - a question many of us have to face and my experiences with making this decision at least thus far.

For the first time since I started blogging for The Colon Club I wasn't able to put up a blog for December. I just couldn't do it - I was just too sick. Too sick to write. I'm finally beginning to recover from the clinical trial drug. It feels good to be semi-human again, despite the various problems I'm still dealing with, partly from the clinical trial, partly from the cancer.

Not that I WANT anyone to be able to relate to this blog, but for those of us who find ourselves in this position, I hope it helps you feel a little less alone.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Re: January Blog - When is Enough, Enough?

Postby janklo » Tue Jan 06, 2015 7:48 pm

I totally understand. I like this blog because it is honest.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

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Re: January Blog - When is Enough, Enough?

Postby stevieb » Tue Jan 06, 2015 8:04 pm

Oh Belle, sending you hugs and love from Louisiana.
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

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Re: January Blog - When is Enough, Enough?

Postby ams5796 » Tue Jan 06, 2015 8:35 pm

Oh Belle, I want to send you love during this most difficult time. Thank you for sharing this with us. Every single one of your blog posts has touched me deeply and this one is certainly no exception. I hope you have years with your beautiful children and with your husband. You are loved by many.

Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Re: January Blog - When is Enough, Enough?

Postby kpjpmom » Tue Jan 06, 2015 8:38 pm

Thank you so much for sharing your thoughts with us. This comes up in my mind often and then I push it away. Your honesty in sharing your journey with us here is so helpful to me personally.
When I first began this path, I thought I had to always be the strong one and that there was a "right" way to do this. I have since learned and continue to learn that each of us has to make our own way and do what we think is right for us. I have not had to go through as much as you, but I know this could be the situation I face at any given time. Your writings have helped me think about what is important to me as an individual. Your service to our community is invaluable. You are and will be in my thoughts and prayers. Thank you once again for sharing your heart with us.
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

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Re: January Blog - When is Enough, Enough?

Postby Wendyz4 » Tue Jan 06, 2015 8:39 pm

I'm hugging you, and not letting go for a little bit. I have tears in my eyes but I'm also smiling. It was such a huge blessing in my life to have met you Belle. You make me smile. I love your honesty and warmth. The picture you posted is peaceful to me, I also see so many people silently holding you up, supporting you and saying, YES, me too, I feel that way. I hope you are finding relief and peace, a lighter cross to bear. I always wanted to meet you and be like you, and even more so now. I too want to just "be".

Quality is better, I'm so proud of you. I'm holding your hand, friend, I love you. Until next time.
44 year old F
Dx 10/2012, T3aN2M0
Completed Xeloda/radiation 1/2013
Proctocolectomy with ileostomy 3/14/13
Lynch positive-MSH2

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Re: January Blog - When is Enough, Enough?

Postby KWT » Tue Jan 06, 2015 9:50 pm

I'm sorry you have to feel this way Belle. It just plain sucks I don't know what else to say.

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Re: January Blog - When is Enough, Enough?

Postby live2jett » Wed Jan 07, 2015 12:35 am

Belle- thank you for sharing your truth.. Your a gifted writer.. The way you describe your feelings with profound emotion and rawness shows the depth of your sweet soul. I always admire your strength and kindness from afar. I consider you one of the oldies in this group ( saying that with love) .. Your a true gift to the colon club ...sending you great love and peace. Xo Deb
DX 10-21-08 Advanced stage IIIC T3 N2 M0
10/20 nodes pos.
Colon resect surgery 11-03-08
chemo 12-03-08 Folfox4 3 rounds
Xeloda 5 rounds(due to leucovorin shortage/severe reaction with oxi)
Carpe Diem NED Update 2014

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Re: January Blog - When is Enough, Enough?

Postby liryk » Wed Jan 07, 2015 1:01 am

I can hardly see the screen - your honesty and willingness to share is a gift, Belle.
You mean so much to so many. I think we are all holding your hand.

Much love,

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Re: January Blog - When is Enough, Enough?

Postby jgall » Wed Jan 07, 2015 8:25 am

I love you, Belle. 'nuff said. :cry:
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15

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Re: January Blog - When is Enough, Enough?

Postby Maia » Wed Jan 07, 2015 9:06 am

(((Belle)) Love you.

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Re: January Blog - When is Enough, Enough?

Postby Regan » Wed Jan 07, 2015 9:34 am

Belle, you have prepared us (if one can ever use "prepared" in this situation) for this topic through your heartfelt blogs throughout your journey.

The subject line alone steeled my emotions for what I felt I knew I was going to read.

As always, you did not disappoint. Raw. Truthful. Realistic. Words painting a picture so clear that I could "almost" feel your pain, mindset and resolve.

You have created a legacy in your amazing blogs that will go on helping people as long as the CC exists. And now (thanks CR), anyone can easily read them all with the blog link.

I can't think of how/what to write to paint YOU a picture of my gratitude and love for you.

Keep us updated when you can....you know how it is when a beloved member goes a while without posting.
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

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Re: January Blog - When is Enough, Enough?

Postby mrcytech » Wed Jan 07, 2015 10:39 am

Belle, this blog is going to help so many people, in so many ways. Thank you so much for all you do, and have done to help us, through your words and experiences. I'm sorry that you had to make this decision, and words cannot express the heaviness I feel in my heart as I read this. Please, keep us posted when you can, and we will keep you in our hearts.

Peace, and Love
Dx 12/12 Stage 3B sigmoid crc T3N1M0
2/13 resection w/ temp Iliost, port insert. Reversal 5/13.
6/13-12/13 Folfox 12 sessions. Oxi stopped @ session 4.
9/14 CT shows 1.2CM nodule on upper lobe of left lung.
3/15 wedge resection left lung (stage 1A lung cancer) no chemo.
9/16 CT/PET shows paratracheal node activity (SUV 10.6), CEA extremely elevated. Mets from colon.
10/16 port insert.
11/16 Begin Folfiri w/Avastin.

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Re: January Blog - When is Enough, Enough?

Postby midlifemom » Wed Jan 07, 2015 11:08 am

Thank you Belle for your feelings and words. I feel as though I am a newbie in this war, yet your words still reach me, as I think many of us have thoughts, fleeting or otherwise, on whether we will know when enough is enough. You have shown extraordinary levels of commitment. I believe it is your choice alone to decide when it's enough.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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Re: January Blog - When is Enough, Enough?

Postby BrownBagger » Wed Jan 07, 2015 3:25 pm

I put off reading your blog this month, Belle, because I really didn't want to face or think about the issue. But eventually I figured, I owe it to my friend to share some of her pain.

We're all kind of selfish. We want the people we know, respect and love to remain with us for as long as possible. But we've all seen what can happen, and it can be pretty ugly all around. At some point, we all have to let go. I think most of us hope that it will be either quick or clean or painless or easy. But the odds of that happening for any of the people on this board are pretty slim. I've always said, "I know how this ends--I just don't know when."

I think I know you well enough to know that this is a well reasoned, rational decision on your part. Only you know when you've had enough. And when that time comes, it helps to have the courage to act in your own best interest.

So I'm sad beyond words, but respect your decision, even though (the selfish) part of me hopes that you'll reconsider and stay with us longer.

I know you'll follow the right path, Belle. We should all aspire to such courage and honesty.

BTW, I think your photo choice is exquisitely appropriate.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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