Setback?

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cindyz
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Setback?

Postby cindyz » Sun May 02, 2010 3:11 pm

After being gone for the first night in over a week, I walked into Stephen's room today after lunch and saw that he was markedly more swollen than when I left him yesterday afternoon. His ankles and feet are so big, it looks like they're about to burst. His stomach is bigger too, and when you look at him from the back you can see that his sides are bulging out more.

He's awfully tired; said he didn't sleep well last night. Still low urine output and not eating, still on TPN. His vitals haven't changed much, except bp is lower than it's been during his time here.

Everyone is telling me that until the liver works better, the swelling won't go down. I asked about a drain being placed, but the doctor's comments and comments here have led me to believe that there is too much of a risk for infection to go this route. I am having a hard time wrapping my mind around the fact that he could die like this, lying here in the bed in pain from being so bloated. I always felt like if the time came, we could at least control his pain so he'd be comfortable. They want him to eat, but every time he tries, he feels sick, so he doesn't try. They want him to drink Ensure and Enliven, but even that is too much. The dilaudid helps his stomach cramping; the only issue is really now the fluid retention and escalating swelling.

If the liver has to work better before the swelling has a chance of going down, how can we get the liver to start working better? I guess that's the million-dollar question.
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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Ashlee H.
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Location: Southern California

Re: Setback?

Postby Ashlee H. » Sun May 02, 2010 3:36 pm

I was so hoping Stephen was getting better. What a shock to hear the update. Nobody wants to give in to dying. I'm not saying the following to be cruel, just throwing out some information. I helped a friend who had terminal stomach cancer. Towards the end, while she was in the hospital, they would be careful about her pain meds because it would mess with her blood pressure and their concern was she would die.. I told them, I don't care...she was dying anyway, just make her comfortable! Well, they didn't care for my opinion and continued to let my friend go through pain. We all knew she was dying. It was almost as if the hospital didn't want a death stat on their books. I got my friend moved to a care facility with hospice involvement. She was there for 2 weeks. She told me as soon as she arrived, she was out of pain. The care facility knew she was terminal and wanted to make her death as pain free and comfortable as possible...screw the stats. My friend had a very peaceful death. I made sure she had music in the room. Studies have shown certain music eases pain and helps the person endure what they are going through.
Like so many, I check throughout the day for your updates. Lots of good vibes out there for the two of you! Wish we could make the pain go away.

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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surfingon
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Re: Setback?

Postby surfingon » Sun May 02, 2010 3:43 pm

Cindy,
This happened to John during his last stay in the hospital, although for different reasons, as far as his doctors could tell-- probably due to his IVC filter being clogged with blood clots. His entire lower body was swollen to the point that even the doctors were completely freaked out. There was no medical intervention possible. His palliative care doctor seemed to think that he had maybe a week to live. He said he wanted out, he wanted to die at home.

In 2 days, he was all set up at home, thanks to the palliative care team. He lived for 5 more months. Ever so gradually, the swelling went down, and eventually, his body returned to almost normalcy, with no treatment, other than pain control. He took full advantage of every moment of those last 5 months to do everything in his power to prepare his mom and I for his eventual death. Given the circumstances, I think that he would have agreed that this was quality time.

Sometimes, modern medicine runs out of tricks. The mysteries of the body and the mind and how they work together remain pretty much of an unknown frontier. Healing occurs on many levels besides that of the flesh. My experience with John is that the seemingly impossible can indeed happen, once the patient is comfortable in a beloved environment and pain free.

May you both experience that. Strongest, most heartfelt prayers for you both.
Rachel
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
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com

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surfingon
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Re: Setback?

Postby surfingon » Sun May 02, 2010 3:56 pm

A quick addition to my previous post: the body has its own wisdom. Stephen's body seems to be telling you that it doesn't want to eat. Perhaps it cannot eat. The Robert Woods Johnson Foundation put together a very excellent online seminar a few years ago on TPN at the end of life; the take-away was that it causes way more problems than it solves. Heart-rending problems. Mostly it is done in nursing homes because the family is freaked out that the patient isn't eating. But the patient isn't eating for a reason, and forcing food into the body when it is unable to process that food is not the solution. If Stephen isn't peeing, where is all the liquid from the TPN and the IV's going? Please consider this, Cindy. Perhaps TPN for Stephen is not a kindness at all but an extra torture for his poor overloaded body.

My prayers go out to you,
Rachel
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
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com

clarabelle64
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Re: Setback?

Postby clarabelle64 » Sun May 02, 2010 5:36 pm

Thoughts and Prayers to you and Stephen Cindy....
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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hopeful
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Re: Setback?

Postby hopeful » Sun May 02, 2010 6:10 pm

Cindy, does he have an iPod or does your laptop have speakers that are good enough for music? I'd love to email a cert for an audiobook or music if you think he'd be interested. Maybe something to get his mind (and yours) focused on something else. PM me and let me know. I want to help in some way.
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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Gaelen
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Re: Setback?

Postby Gaelen » Sun May 02, 2010 6:42 pm

cindyz wrote:After being gone for the first night in over a week, I walked into Stephen's room today after lunch and saw that he was markedly more swollen than when I left him yesterday afternoon. His ankles and feet are so big, it looks like they're about to burst. His stomach is bigger too, and when you look at him from the back you can see that his sides are bulging out more.

He's awfully tired; said he didn't sleep well last night. Still low urine output and not eating, still on TPN. His vitals haven't changed much, except bp is lower than it's been during his time here.....They want him to eat, but every time he tries, he feels sick, so he doesn't try. They want him to drink Ensure and Enliven, but even that is too much. The dilaudid helps his stomach cramping; the only issue is really now the fluid retention and escalating swelling.


Cindy, how was his attitude? One of the secondary signs of the liver being compromised is disorientation and confusion - if there are signs of that, then beyond the swelling and jaundice the liver is reaching a new level of compromise.

My strongest thoughts.
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

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: Setback?

Postby mom_2_3 » Sun May 02, 2010 6:52 pm

Cindy,

I don't post often but I always read your threads. You and Stephen are always in my thoughts and prayers. I have no practical advice for you as others have provided here. I can only say that I am thinking of you both and hope there is resolution to his Stephen's pain.

All the best,
Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

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Nanette
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Re: Setback?

Postby Nanette » Sun May 02, 2010 7:21 pm

Hi Cindy,

I've been reading your threads here and want to say you and Stephen are in my thoughts and prayers at this difficult time. I wish I could give you some advice, but I have none. I hope Stephen will start feeling some relief as soon as possible. You have been through so much and I know it's hard to watch someone you love to be in so much pain.

Praying for 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!!!!!!

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

Re: Setback?

Postby cindyz » Sun May 02, 2010 7:22 pm

Pat, he's not disoriented, but I would say he cannot focus on much. What I mean by that is that he can't read a book or watch a movie, except for right now he IS watching Amazing Race. He just can't concentrate on too much at a time, and I think a lot of that is from the dilaudid. When we talk, however, he's very easy to understand and makes perfect sense.

He does have his iPod with him and has his favorite music loaded on it, but so far I haven't seen him want to listen to it much. I offer, but he declines. That kind of surprises me because he's a musician and playing guitar is a passion of his (as is music). He just seems SO frustrated at being here, or having to be here...even though I have given him the option of going home and using Hospice as and when we need them. When I asked him why, he said "I'm going to beat this infection, and then go home."

Rachel...TPN: I am getting different answers on this one. The nutritionist has visited Stephen a couple of times and told him that he didn't see him getting off the TPN, but he "could if he wanted to." When we asked Stephen's nurse tonight, she went into this huge explanation that the TPN wasn't contributing to Stephen's swelling in his legs and that the TPN helped balance Stephen's electrolytes. Her thinking is that if he stopped taking the TPN, it could be a bad thing for his body. I asked her to put a call into the doctor and see what she said tonight, and if it was approved we wanted to stop the TPN infusion for the night.

I didn't think stopping the TPN would be a bad thing, at least temporarily, but she tried to convince us otherwise. Stephen said that he felt if he didn't get the TPN, he might actually develop a real appetite. The nurse said that the TPN shouldn't affect his appetite at all.

Thank you for all of your support during this time, truly.
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

Little t

Re: Setback?

Postby Little t » Mon May 03, 2010 9:31 am

Hi Cindy,

I just have a quick note on the appetite. My husband was on TPN when he had his perforation. He was malnutritioned already when they put him on it and it was given to him only during the time he was medically unable to eat, due to the perforation and a short time after the surgery. We were told it does suppress your appetite and it did. When my husband came off of it he was put on all liquid for a day, then semi liquid as soon as he had a regular bowel movement he went back to a regular diet. If Stephen has no medical reason he can't eventually go back to regular food I think taking him off of the TPN is something you should discuss with the GI doc's.

Toni

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Gaelen
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Re: Setback?

Postby Gaelen » Mon May 03, 2010 2:33 pm

Cindy, what happened? Did Stephen stop the TPN last night? Any effects?

Thank you for all of your support during this time, truly.

We do what we can, and we all wish it could be more.
Last edited by Gaelen on Mon May 03, 2010 6:45 pm, edited 1 time in total.
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

dianne052506
Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: Setback?

Postby dianne052506 » Mon May 03, 2010 6:17 pm

Cindy,
Has the problem with urination gotten any better? You mentioned lasix at the beginning, but I haven't heard anything about it lately. I wish so much that I could help.
Leroy Siever's (http://www.npr.org/blogs/mycancer) wife, Laurie, asked that their friends lift them in prayer when things got to be rough. She copied it from the times that one or more friends would help move 6 ft plus Leroy from bed to chair. So in Leroy's and Laurie's words, "ready...one..two..three...LIFT!"

Please know that you and Stephen are on all our minds, and in our hearts.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again


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