Very exciting day

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Very exciting day

Postby Newlywed » Sun Dec 12, 2010 9:20 pm

WOW.. what a big difference today was in comparison to John's last surgery 2 weeks ago. For one he did not have dilaudin so no craziness like trying to pull things out.

His ng tube was removed so now he is using the g tube only for his stomach bile. That is much more comfortable for him. Also, while he was so afraid of the pain he actually got up with coaxing to sit in a chair and let me sponge bath him. His mind is back with a positive attitude.

I have not looked at the tubes and ileostomy bag as of yet. One reason is because he has a girdle around him still. So this is good because I need to build my mind to it. And so does he. We'll get there together and that day is tomorrow with the wound/ileostomy nurse coming in to show us a video and train us on the bags.

Now, I know don't jump to the next hurdle before this one is done. But that is impossible for me. I am a planner and I have to know all the steps to beat this stupid disease.

While I know there is a chance that we won't .. in my heart of hearts I truly believe that we can beat it together. No I am not being naive..

Tomorrow I get to talk to the nurse navigator for Baylor Dallas. She'll be setting appointments for us with a new oncologist with Baylor. I am excited because they work miracles. We have been adviced to go with the Mary Crowley research and they'll infuse the tumors with virus' to see what is going to work.

On the first report 2 weeks ago the surgeon wrote this was a palliative surgery because prognosis is poor. But he also told us he looked around and was surprised that the cancer was not as wide spread as he thought it was. He is not a surgical oncologist. Because his information is not in line with our oncologist that said he is still hopefull and optimisitc. But I figure it is time to get aggressive.
Wife of John who was DX 8/23/10 Stage IV
2 spots of origin in Colon 11/29/10 removed
Mets to liver, lungs, kidneys
Folfox w/Avastin 9/10-11/10 Stopped working
11/29/10 Colectomy
12/11/10 G Tube and Ileostomy
Kras Wild
Married 8/9/10

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Re: Very exciting day

Postby karin » Sun Dec 12, 2010 9:53 pm

you are doing all the right things and yes, it probably is time to get aggressive. I think Baylor is the place John needs to be, like you said, they are miracle workers!!

I am so glad this day has turned things around some for y'all!!
Luv to you,
BFF dx'd June09 w CRC & peritoneal mucinous carcinomatosis @ age 40
She beat cancer for 20 months!

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Re: Very exciting day

Postby janklo » Sun Dec 12, 2010 10:04 pm

See, now the worst is behind you. It's all gotta be uphill from here! John will get stronger, get out of the hospital and get on with treatment. Yes!
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: Very exciting day

Postby Kathleen808 » Sun Dec 12, 2010 10:07 pm

It sounds like things are moving along positively. You're doing a good job of one step at a time and keeping up on things. I pray things at Baylor work out. You're a great wife.

DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

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Re: Very exciting day

Postby salysue » Sun Dec 12, 2010 11:00 pm

One day at a's all any of us can do.
Husband diagnosed 2/7/08
2 nodes positive out of 29
5FU and radiation
Surgery 6/10/08
6 months Folfox ended 12/31/08
Ileo takedown 2/12/09


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Re: Very exciting day

Postby SoCalSaz » Sun Dec 12, 2010 11:03 pm

You're doing great. I admire your strength and persistence and love!!
42; dx RC 3/10
5 wks chemorad 5/10
LAR 8/10, ileo rev. 10/10
2 rounds XELOX 4 rounds Xeloda 11/10-4/11

Thyroid ca 1997; bleeding/connective tissue/autoimmune disorders

"Julius Caesar & the Roman Empire couldn't conquer the blue sky"

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Re: Very exciting day

Postby jmarie » Sun Dec 12, 2010 11:06 pm

Well it is so good to see you guys had a good day. I can't imagine how exhausted you two must be after the last few weeks. Hopefully this means he can start making his way home and continue to heal from the comfort of his own bed. :D
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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Re: Very exciting day

Postby SkiFletch » Sun Dec 12, 2010 11:32 pm

Sometimes a little bionic man stuff is needed :). Glad to hear things are going well with the stomas. Hoping they continue to get better and that you guys find what you're looking for at Baylor
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Re: Very exciting day

Postby GreenLakeGirl » Mon Dec 13, 2010 2:16 am

I can't remember if someone else already mentioned this, but when you first see his ostomy bag, remember that the hospital-supplied version is often see-through and crinkly. The see-through part is great when you're in the hospital so the staff can see what a patient's output looks like, but at home, most people get an opaque version that leaves a little more to the imagination and doesn't make so much noise. His bag will probably have a straight, simple clip; there are other clips that curve to your leg to be more comfortable, and bags without clips (either disposable ones without a drain or a drainable version with a Velcro folding closure).

A video to get trained on the bag?? You two will do great!
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

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Re: Very exciting day

Postby Nanette » Mon Dec 13, 2010 9:37 am


So happy things are looking up and John is feeling better. Take it one day at a time.

Husband, Bruce - diag. 12/07/08 at age 50
Stage IIIB CC, poorly diff, muc. adeno, sig. ring cell
Stage I bladder cancer
1 of 17 LN affected
Colonectomy 12/11/08
Finished chemo/rad on 8/19/09
Four years NED on 12/11/12 - Thank God!!
Livin' life!!!!!!

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Re: Very exciting day

Postby clarabelle64 » Mon Dec 13, 2010 1:36 pm

It's all good Newlywed!! Lovely to hear that John is improving daily....
Clarabelle, Mother of Deborah who has CC with mets to liver + lungs.
Has been on Folfiri then 5FU + Oxi
Lung Mets progressed
Currently on Intravenous Vit C + diet + supplements
My darling girl passed away 18.8.2011

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Re: Very exciting day

Postby helen098 » Mon Dec 13, 2010 1:50 pm

glad to hear he's doing well
one day at a time ...keep fighting
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

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Re: Very exciting day

Postby Terry » Mon Dec 13, 2010 7:51 pm

NG tube is out, THAT's a big step to feeling better. I've put them in, removed them, never had one and don't want one. I'm sure he's much more comfortable.

Take it day by day, hour by hour and minute by minute.

Your in my prayers.
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!

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