Totally O/T

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Totally O/T

Postby CRguy » Sun Aug 05, 2018 12:32 am

I have not done this kind of post for a very long time
please indulge me ... :shock:

sitting here at the keyboard remembering MANY friends while I do my Mod duties
I do Mod duties with Jaynee to keep US here ... up and running !!! WORD :mrgreen:

where I live I am hearing the " Celebration of Light " fireworks .. bang bing boom

what I FEEL is every BOOM is one of my friends here
getting stronger
going bigger
being MORE !!!!

and I also feel my friends, no longer here
escaping, exploding into their OWN star ...

getting stronger
going bigger
being MORE ... than we could ever have imagined we could be

NOT here
BUTT never gone

Harmony to ALL
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Totally O/T

Postby ANDRETEXAS » Sun Aug 05, 2018 2:02 am


We humans are stardust. You can think of ourselves as being seen while we are alive, glowing and developing. When we die, we can't be seen as clearly, but we are always there. We are a part of the billions of solar systems of the universes. When I read the excerpt below, my mind exploded, but I also sensed that anything is possible...and I thought our friends here and gone were always with us.

"Icarus, which is located 9 billion light-years away, was visible only because of a technique called gravitational lensing. Astronomers have observed a star that's so far away, its light took 9 billion years to reach us here on Earth — about 4.5 billion years before our solar system even existed."
2/10 - Colon resect
2/13 - DX- Stage IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
3/23- clean CT
2/22- clean CT
3/21 - clean CT
4/11 - clean colonoscopy
3/11 - clean CT


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Joined: Sat Oct 21, 2017 1:34 pm

Re: Totally O/T

Postby retiredteacher » Sun Aug 05, 2018 2:48 am

Thank-you for this
RC, F, 63 at diagnosis, Sept. 2017
Adeno 6.3 - 7 cm tumor (PET) MSS, G2,
Est. T3N0M0 PET
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018, 0.6 Oct. 2018
MRI Feb. 2018 Presurg yT2 N0 12 cm from AV 3 cm
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm
CAPEOX March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues, liver enzymes
Clear CT and colonoscopy November 2018. NED. :-)

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O Stoma Mia
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Re: Totally O/T

Postby O Stoma Mia » Mon Aug 06, 2018 3:09 am

CRguy wrote:... I do Mod duties with Jaynee to keep US here ... up and running !!! ...

CRguy & Jaynee -

Thanks for "keeping US here ... up and running". It must be nice for old-timers to come here and see a couple of familiar faces whenever they stop by to check-in.

Most of the frequent contributors from five to ten years ago are no longer posting much here anymore. A lot of the frequent contributors nowadays are from five to ten months ago, not from five to ten years ago.

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Location: Ontario

Re: Totally O/T

Postby mobrouser » Mon Aug 06, 2018 11:05 am

Here's my analogy.

When I am asked to make something for dinner, dessert, breakfast, etc that I haven't made before my first action is to go to The Joy of Cooking. (my copy is from 1975, I don't even know if it is still published.)
It gives me all the information that I need to know for preparation, ingredients, timing as well as helpful hints.
I then search on line to see if there are any new twists to the basic recipe that I can take advantage of to make it better, faster, what have you.

I think this forum does the same thing all in one place. I can go through the archives and find my recipe to success, and then go through more current posts to see if there are any new trends, treatments and tips that I can make use of. And all the while I can celebrate those who were before me and support those who are with me now.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Totally O/T

Postby bitchslapped » Mon Aug 06, 2018 11:54 am

True dat, CR.

Stoma, you always have interesting observations, facts. I've noticed a change as well, including myself I guess, but still hangin around here & there.

mob, I like your analogy very much.

Best Wishes All,

DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Posts: 260
Joined: Fri Mar 18, 2016 8:16 am

Re: Totally O/T

Postby AppleTree » Mon Aug 06, 2018 9:11 pm

Thank you for all you do and involvement on this board. Beautiful sentiment. I just lost a sister last month to cancer. We used to try to get chemo chairs together this past winter.

May we all be shining stars, whether here on earth or up above.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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Maggie Nell
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Re: Totally O/T

Postby Maggie Nell » Mon Aug 06, 2018 10:43 pm

Like the lyrics to the song from the 1970s version of A Star is Born,

With one more look at you.
I could learn to tame the clouds.
And let the sun shine through.
Leave a troubled past and I might start anew.

Watch closely now...are you watching me now.
Watch me now....

Sing it loud OK!!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

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Re: Totally O/T

Postby CRguy » Tue Aug 07, 2018 12:28 am

luvvin' all the input
the exact reason I posted this way

I believe
we change who we are as a "group"
BUTT always remain the same folks, online

we are changed, who we are as individuals
BUTT always remain the same folks, inside

This forum always has the best folks and the best ways of interacting
mind, body, spirit
facts, questions, answers
support, pro-activity, advocacy
humor, love, acceptance

life, living, ...... and beyond

I believe this forum is about the person inside the disease
... more than just about the disease inside the person

Harmony to ALL on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

justin case
Posts: 4240
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Totally O/T

Postby justin case » Fri Aug 10, 2018 7:41 pm

Still here after all these years, too many of my friends going through some of the same things, only different . I owe a lot to many of the people on this forum, Thank You !
7/11 diagnosed Stage 2 colon and rectal cancer
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Posts: 306
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Totally O/T

Postby benben » Fri Aug 10, 2018 8:49 pm


Shine on you Crazy Diamonds!

Photo taken by my son with his new camera around 3am at the base of the South Sister mountain. Morning before we Ascended. 7/22/18
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

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Re: Totally O/T

Postby CRguy » Sat Aug 11, 2018 2:00 am


thanks for sharing ... BUTT I won't say exactly what I "see" in that majestic cosmic vista
OR you will all figure I am "on the ..spectrum.." somewhere ..... :shock:

Yeah back in the day we had no spectrums ... now we do :twisted:

I see
hands, faces, mountains and valleys
demons and salvation
almost a predatory crab roaming ... ?
The CRAB thing just hit me later
Zodiac crab sign is .......Cancer
the sign ... NOT THE DISEASE

.... and friends
I always see my friends
BUTT sadly too many stricken with ... cancer

Thank you for sharing this exceptional view of my very dear ... departed friends
gone BUTT still HERE !

Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Posts: 12
Joined: Sun Aug 27, 2017 11:16 pm

Re: Totally O/T

Postby Ksiemonsma » Sat Aug 11, 2018 8:13 am

Thanks for all you do. This site gives me the inspiration and hope that keeps me going. The stories I read are my motivation to beat this alien inside me.
Colon cancer 7/17 age 49
Colectomy 8/17
Stage 3C T4B N2B MO
16/27 lymph nodes
First round of FOLFOX on 9/13/17
3/7/18. 12th round and hopefully last of FOLFOX (9 with oxi)
Clear scans 6/7/18
Clear scans 10/3/18

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Posts: 9788
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Re: Totally O/T

Postby CRguy » Mon Aug 13, 2018 11:36 pm

Yeah I understand that more than you might imagine

Some nights I come here and "relive" the many discussions with friends departed
Some nights I come here and hit a topic and I just can't re-read thru all those posts again

I have been there once
we are not all still here

I am good just to let those no longer here
...just be

ALWAYS ... never forgotten
...just not here right now

ALWAYS an inspiration to us all
ALWAYS leading the way, so WE can still be here

Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Posts: 70
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Totally O/T

Postby martd » Tue Aug 14, 2018 10:15 am

As a newbie here I want to give you a big THANK YOU!! For doing what you do and to the other mods too. Back in November I remember scouring through different forums looking for hope, answers, and knowledge, none of them were anywhere near the level of this one. Most of them felt like a free for all and you had to sort through the b/s for the real answers. Huge props to you all for maintaining this forum to the level that it is. Investing this much of your time to help others is just amazing and it's very much appreciated!

49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9

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