Hoping for an update from Cindyz...

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KellyBelle
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Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Hoping for an update from Cindyz...

Postby KellyBelle » Mon May 03, 2010 5:39 pm

I think I'm probably not alone in wondering how Stephen is doing. I've been thinking about you for a few days, and find myself checking the site often.

Any progress Cindy? You and Stephen are in my thoughts daily.

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

Twinsmom
Posts: 294
Joined: Sat Mar 07, 2009 5:23 pm
Location: Illinois

Re: Hoping for an update from Cindyz...

Postby Twinsmom » Mon May 03, 2010 6:27 pm

Same here, Cindy.
rectal cancer dx 12/19/08 at age 46
49 yrs old
stage IIa
chemoradiation 6 weeks Jan 09-Feb09
surgery 4/13/09, clean margins, temp ileo
Folfox 5/09 - 10/09
Takedown 12/07/09
Clean CT scans April, 2010 and May 2011: NED
Twin sons, age 13

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blakeswife
Posts: 540
Joined: Sun Jul 26, 2009 5:55 pm
Facebook Username: kathy.mair
Location: Utah

Re: Hoping for an update from Cindyz...

Postby blakeswife » Mon May 03, 2010 6:37 pm

Me too! I've been thinking of you all day!

Hope you both have had a great, restful day of healing!

Kathy
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks

SkiFletch
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Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: Hoping for an update from Cindyz...

Postby SkiFletch » Mon May 03, 2010 6:53 pm

Me3. Good luck Cindy and Stephen, we're all pullin for you two
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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Nanette
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Facebook Username: Nanette Pepperday-Derry
Location: Buffalo, NY

Re: Hoping for an update from Cindyz...

Postby Nanette » Mon May 03, 2010 6:55 pm

Hi Cindy,

Please know you and Stephen are in my thoughts and prayers.

Thinking of you both...
-Nanette
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!!!!!!

clarabelle64
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Facebook Username: claire beaumont

Re: Hoping for an update from Cindyz...

Postby clarabelle64 » Mon May 03, 2010 7:09 pm

I've been think of Stephen and Cindy all day today too....thoughts and prayers to you both...
Clarabelle
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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Russian27
Posts: 490
Joined: Sun May 17, 2009 9:47 am

Re: Hoping for an update from Cindyz...

Postby Russian27 » Mon May 03, 2010 7:09 pm

I hope everything is going in the right direction (improvement) Cindy.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

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Kathleen808
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Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

Re: Hoping for an update from Cindyz...

Postby Kathleen808 » Mon May 03, 2010 7:20 pm

I am thinking and praying for the two of you also. Hope things are improving for Stephen.

Aloha,
Kathleen
Kathleen
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

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hoping for an update from Cindyz...

Postby Lee » Mon May 03, 2010 7:22 pm

I too add my thoughts and prayers for Cindy and Stephen. Please update us when you can.

God be with you both.

Lee
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 - 10 years and counting!

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cindyz
Posts: 463
Joined: Mon Jun 29, 2009 9:17 pm

Re: Hoping for an update from Cindyz...

Postby cindyz » Mon May 03, 2010 7:36 pm

What can I say? You guys are amazing. Truly, truly some of the best people I've ever had the pleasure of talking to.

I think it's time for us to go home. I talked to the charge nurse here for quite some time - just she and I - and told her about Stephen's reluctance to use Hospice at this point. We talked about the option of home health care, and Stephen is on board. He's ready.

Stephen is so very swollen now, it's gotten much worse. His legs - from his thighs down- are about 4 times the normal size. An ultrasound was done to make sure there wasn't portal vein thrombosis, and a CT scan was also done around 6:00. No word from the ultrasound, but that was done this morning so I think if it was PVT then we would have heard by now. You can press your fingers into his legs and the indentations remain - like silly putty.

Stephen is getting another tap tomorrow for hopefully some relief and for diagnostic purposes – they want to see if the fluid is sterile or if it still has bacteria. We have a referral in place to speak to someone with Home Health Care, and hopefully that will go okay. I have heard very good things about Hospice but not much about experiences with home health. I hope It will be a positive move. I just need to get him home, in his surroundings, with our cats and birds and daughters and love and life. He hasn’t had a breath of fresh air in 10 days.

After his GI doc saw him today (this was the first time he had heard that Stephen was here), he said that he strongly felt like Stephen’s edema was from malnutrition. He said that his albumin levels were low and he wanted to put some sort of tube in Stephen’s nose and feed his large bowel directly. He’s very against TPN. He said anytime you can get food directly “in,” it’s so much better. I forgot the type of tube…a “Dof-Hop” or something like that. He can have this at home, so that won’t be a problem.

I was so very relieved to find someone who didn’t automatically say that Stephen’s swelling is all due to liver failure. Certainly, his bilirubin and jaundice are apparent signs of this, but honestly…intuitively – and of course I’m not a doctor- I think that the malnutrition comment was accurate and helpful. It’s thinking outside the box and I like that.

So I don’t know what to expect now, not sure how home health works, whether they’ll take him home in an ambulance, what to expect as far as how active the nurses will be In our home….all these questions. The one thing that I DO know is that it is absolutely the right decision to take my husband home now.
Wife to Stephen, dx 5/13/09; 45 yo
Stage IV w/numerous mets to liver, 2 to LNs
Colon resection 5/25/09
Folfox/Avastin, Folfiri/Avastin, Folfiri/Erbitux-progressed
Sir Spheres 2/2/2010
Admitted to hospital 4/23/2010
Passed away 5/09/2010

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kimmercans
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Re: Hoping for an update from Cindyz...

Postby kimmercans » Mon May 03, 2010 7:48 pm

Wonderful to here from you! Getting Stephen home will make a world of difference for both of you! A chance to get a nights sleep without interuptions, better food, and no chance of hospital born infection. Home health is like anything else...kind of like in the hospital...a good nurse makes all the difference. So, if you are not happy with your first nurse assignee...request a change. Your nurse is your lifeline when using home health. Cindy, you are such an amazing advocate for Stephen...he is so fortunate to have you by his side!

Kim
Kimberly Age 54 Diagnosed at 44
Dx'd rectal ca 10/12/09
LAR,TME 10/14/2009 Stage 2a
Opted out of Folfox.
4/19/12 CT scan clear NED CEA<0.5
10/2019 still NED
Taking curcumin, Celebrex, vitamin d, digestive enzymes, bio identical hormone replacement.
2015 to present. Stopped all surveillance. Living life one glorious day at a time.

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Ashlee H.
Posts: 2435
Joined: Fri Oct 09, 2009 11:50 pm
Location: Southern California

Re: Hoping for an update from Cindyz...

Postby Ashlee H. » Mon May 03, 2010 7:58 pm

I, along with everyone else today, has continued checking the site for your update. Glad Stephen is coming home and you can get out of that hospital environment. Sending positive thoughts your way.

Ashlee
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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Nanette
Posts: 1323
Joined: Sat Jan 31, 2009 11:15 am
Facebook Username: Nanette Pepperday-Derry
Location: Buffalo, NY

Re: Hoping for an update from Cindyz...

Postby Nanette » Mon May 03, 2010 8:04 pm

It's good to see you here, Cindy! It sounds like you have a plan and once you are home, it will bring you some normalcy to your lives. It always feels so much better to be in your own home surrounded by family, friends and furry friends.

Home health is a great way to go. Kim is right on the money. A good nurse will make a difference. And if you are not happy with her, request another one. It will be such a big help to you and Stephen.

Keep us posted on how Stephen's doing. I hope his swelling goes down soon.

Sending warm thoughts and prayers your way...
-Nanette
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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karin
Posts: 1278
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Facebook Username: Karin Tobin Fagner
Location: Austin, TX

Re: Hoping for an update from Cindyz...

Postby karin » Mon May 03, 2010 8:47 pm

cindy,
great news!! It will be so much better for him to be at home during this wonderful springtime!! Please tell him we are all thinking of him and post when you can!!

Luv and hugs,
Karin
Karin
BFF dx'd June09 w CRC & peritoneal mucinous carcinomatosis @ age 40
She beat cancer for 20 months!

clarabelle64
Posts: 1022
Joined: Sat Nov 14, 2009 2:27 pm
Facebook Username: claire beaumont

Re: Hoping for an update from Cindyz...

Postby clarabelle64 » Mon May 03, 2010 9:00 pm

Dear Cindy
thank you for letting us know the latest news about Stephen. Once you have him back home, in familiar surroundings, with his family etc, things may settle down enough to show some improvement....sending love and support to you and yours
Clarabelle
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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