Hoping for an update from Cindyz...

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Re: Hoping for an update from Cindyz...

Postby girlnextdoor » Mon May 03, 2010 9:12 pm


We are also bringing David home today after 23 days in the hospital. He is already doing better just being home.

We'll be having a home health nurse also and I had a hospital bed delivered today along with oxygen. Physical therapy will start soon so he can eventually climb the stairs to our bedroom and the shower.

Let's hope we're both on a better path for our husbands.

I check in daily to see how you're doing. You're on my mind.

Husband, age 52, DX RC 8/2007
Stage III
Surgery (APR) 12/2007
2 lung nodules 5/2008
HNPCC postive (MSH2 mutation)
Mets to lung 5/2009,lymph nodes
FOLFIRI, Avastin 7/2009
Xeloda 1/2010
Four children (18,15,12,11)

Lisa, loving wife

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Re: Hoping for an update from Cindyz...

Postby hopeful » Mon May 03, 2010 9:26 pm

Cindy and Lisa, I'm so glad to hear that both of you are getting your husbands back into their own homes. Hospitals are such disruptive places, so hard to sleep. Let us know how the health nurse thing works out. Your families with both be in my prayers and thoughts. Big hugs to all of you.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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Re: Hoping for an update from Cindyz...

Postby Lee » Mon May 03, 2010 9:51 pm

Lisa, I hope David is happy to be home.

Cindy, I hope Stephen is home REAL soon.

I understand wanting to be home, for each of my last surgeries, my goal was to get home ASAP!!

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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Re: Hoping for an update from Cindyz...

Postby jmarie » Mon May 03, 2010 10:01 pm

That is so great that he is going home. I am sure he will feel better and more comfortable in his own bed.

I had home health after dx until 6 weeks later when Lilliana was born. Mainly to maintain my PICC line but also because my OB/GYN didn't really want me leaving the hospital so home health was our compromise. I loved my home health nurse. She was very compassionate and caring but also very no-nonsense. I haven't had her come out since 3 wks after Lilli was born but she has called a few times to see how I was doing. Anyways I was very pleased with Home health. I went through Baptist Home Health. They had all my medications and supplies delivered every two weeks and were very flexible with that.
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: Hoping for an update from Cindyz...

Postby surfingon » Mon May 03, 2010 11:39 pm

Great call, Cindy. Stephen will be so much more mentally comfortable at home-- and we all hope physically as well. I'm just concerned that you will still be left with the huge responsibility (and headache and heartache) of calling the shots on his care. Which of his doctors will be the go-to person who directs the medical decisions?

I answered your question about talking about end of life issues under the Third Spacing thread-- although I'm sure you're way to busy with all that's on your plate right now. I didn't continue that topic via PM for the same reason, but if you are interested in hearing more when things settle down for you, please let me know...

Like everyone else on this board, I've been obsessively checking the posts all day, hoping for some good news news from you. Thank you for taking the time to let us know what's going on.

Blessings to you both,
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

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Re: Hoping for an update from Cindyz...

Postby cindyz » Tue May 04, 2010 5:59 am

Hello everyone,

First, Lisa....I'm so glad that you have David home and that he is getting better. You're on my mind, too.

Secondly, wow how things can change on a dime. Almost immediately afterward I posted my note here, one of the internists (not our regular one) came in and said that we were having to move Stephen BACK to CCU (he had been moved to a PCU room yesterday around lunch, less monitoring, etc.) and that the feeding tube and drain were on hold for now. He completely changed everything, all our plans. As the way things ended up, we were packing up our stuff and moving to another room (our previous room in CCU actually) around 2:00 a.m. The man next to us screamed ALL night long, I swear, I was about to call the ambulance for him. I don't know what they're doing to that poor man - or what they're not doing. He was screaming this way before we left and has been doing it for days. Stephen and I couldn't sleep already, and then on top of that... Bad thing is, I don't think they have any other rooms on this floor for us.

Anyway, the reason the internist and infectious disease guy were concerned is that Stephen's blood pressure dropped alarmingly during the day. Last reading was about 89/50. He has no fever, and his other symptoms are the same. They immediately gave him fluids, even though he's swollen up like a whale. They said that this was really the only thing to do for low blood pressure in his case. The internist said that he's very afraid that Stephen's perforation never healed. He said that he took a look at the CT scan done yesterday at 6 pm, and it looks like there is stiil air in the abdomen. Of course, like he said, reading scans isn't his forte...that was just his initial take on things and we'd have the definitive word by early this morning. Stephen's WBCs rose up to 14 and some of his liver counts were worse.

What concerns me is that the weekend infectious disease doctor totally changed Stephen's antibiotics mid-course, on Saturday. By Sunday, Stephen was so much worse. The numbers that were getting better, got worse, and overall he just wasn't feeling as well. The antibiotics were changed because, according to the ID doc, they had isolated the bacteria and were simplifying his medicine. What started as three antibiotics was changed to two (and different ones at that).

The internist said that it is his opinion that Stephen is “right back where he was when he was admitted, needing surgery.” He said that if the perf is not healed, no amount of antibiotics would help him. The GI surgeons have told me repeatedly over the week that there is no way the perforation hadn’t closed, because they strongly feel like Stephen wouldn’t be alive at this point and he wouldn’t be showing signs of getting better…only progressively worse during the week.

Stephen can’t have surgery. I just don’t think he’d make it. If they make me make that choice, I just don’t know what to do. I was told last night that it just might come to that, and that it would be extremely risky. I don’t know what to do.

The ID doc put Stephen back on the original antibiotics that were helping Stephen in the first place, and all night long he’s had these going into his system along with the fluid. His blood pressure has gotten a little higher, around 95/65 or so, averaging. When I left his room this morning for my mandatory kick-out, it was 100/68. What I want to do is give the antibiotics he’s now on time to work, just to see if that is indeed the problem. I just don’t know if we have the time for these wait-and-see measures.
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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Re: Hoping for an update from Cindyz...

Postby pearlgirl » Tue May 04, 2010 6:33 am

It's been a terrible rollercoaster ride for you two. I'm sorry to hear about this setback, especially since you were both so looking forward to returning to the normalcy and comfort of home. I'll keep the two of you in my thoughts and prayers.
Husband DX CC (T2N0M0) 9/06
LAR 9/06
Recurrence, now CRC 1/08
chemo/rad, 6 weeks, ended 5/2/08
2nd LAR/ temp ileo 6/19/08,
8/4/08> 6 months chemo
ileo reversal 4/09, in remission

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Re: Hoping for an update from Cindyz...

Postby Gaelen » Tue May 04, 2010 6:50 am

Cindy, I know how upsetting it can be when discharge plans change at the last minute - been there.
Your concern about what to do if the docs want to do surgery point up what Rachel mentioned about having to make the minute-by-minute calls about Stephen's care that will happen if you bring him home with home health care - they will be looking to you for that input on each decision unless Stephen clearly expresses his wishes and has them in writing.

Would it help to get the surgeon who would be operating and the internist in the room, together, and with Stephen ask what their next courses are, how they see things going, and what they think about his prospects for going home and his need for surgery? Hearing their thoughts could help Stephen answer the questions about what he wants to do next, and knowing his wishes could help guide you.

My strongest thoughts, kiddo.
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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Re: Hoping for an update from Cindyz...

Postby salysue » Tue May 04, 2010 7:02 am

I have also been reading and watching for your updates. We are all concerned about Stephen....and you. As a caregiver also, I know how horrible this situtation is for you. It is so difficult to see your loved one have to endure so much. May God guide you and Stephen in making those important decisions. We are right here for you.
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: Hoping for an update from Cindyz...

Postby KarMel » Tue May 04, 2010 7:24 am

Just wanted you to know that you both have been lifted up in prayers, and also , I've prayed for wisdom for your physicians. It seems like you and Stephen are sailing a ship thru some incredibly stormy seas, not knowing for sure what direction to go.
Your strength at caring and being your husband's best advocate is astounding and an awesome demonstration of how much love you share.

Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Re: Hoping for an update from Cindyz...

Postby James65 » Tue May 04, 2010 7:45 am

I'm sorry that things have not gone well and that you seem to bein the midst of competing medical specialties. It seems like the doctors are not working well as a team and that they are making their own independent assessments and decisions. You are at the center of this whirlwind and must rely on your own wisdom and intution, which is a very difficult and scary place to be. All of us have said this and I will repeat it--you are doing well and managing with courage and intelligence.

My advice is to try and get a few of these doctors in the same room together, away from Stephen, and have them come up with a strategy rather than random acts.

Be well,
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

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Re: Hoping for an update from Cindyz...

Postby Surroundedbylove » Tue May 04, 2010 7:49 am

Oh Cindy,

My prayers are with you both during this terribly agonizing time. I like Gaelen's suggestion of getting the team together in Stephen's room - a true care conference with Stephen able to participate.

My best to you both for strength, peace, and a positive resolution to all of this.

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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Re: Hoping for an update from Cindyz...

Postby James65 » Tue May 04, 2010 7:52 am

I would amend my advice above to include Stephen as well.

Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

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Re: Hoping for an update from Cindyz...

Postby luciag » Tue May 04, 2010 7:55 am


I have no advice to offer but I do send hugs, prayers and positive healing energy to you and Stephen.

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Re: Hoping for an update from Cindyz...

Postby SkiFletch » Tue May 04, 2010 7:56 am

Risky as it sounds, your surgeon might be right. Are they still worried about the Avastin?

Wishing you guys the best.
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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