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David is heading home with hospice - liver is failing

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

It is so sad for me to report David, my best friend and husband, has progressive liver failure. A little background. He was dx 4/3/2008 with stage 3C colon cancer. Had a resection and went on chemo for six months. In 12/08 had a ct scan showing cancer was in liver. Surgeons in San Antonio told us he was inoperable. He went back on chemo and RFA was scheduled. On the operating table for the RFA they could not detect the cancer. So back on chemo he went. In 10!/09 the tumor was back.

We came to MD Anderson then, went through biopsies, portal vein embolization, more chemo, and on 3/24/10 he had the resection. Seventy five percent of his liver was removed and his main bile duct had to be resected as well and connected directly to his colon. Numerous bile duct leaks, then an infection, and a procedure was done to unclog the ducts but they were too narrow for the interventional radiologist to repair. David has been going down hill since the surgery in March.

Friday I drove him back to MDA for hospitalization. Our surgeon had the talk no one wants to hear. There were no more options. We were told he was not a candidate for a liver transplant due to the primary cancer. Short of a miracle it was time for palliative care. It could be here at MDA or home.

So tomorrow David will be discharged after selecting a hospice and we will return home Tuesday. My heart is broken. I can't imagine what the future holds. Family and close friends flew to Houston from as far away as Seattle to be with us. We've spent the weekend in tears and laughter and the outpouring of love and support has been amazing.

I did not write this to discourage anyone. My only regret is we didn't get to MDA sooner before all the chemo had damaged his liver and maybe his chances would have been better. The nurses, PA, and surgeon here are fabulous and caring. David's nurse cried when she found out we were going into hospice and told him he was her favorite patient ever. David is such a character that no one who meets him ever forgets him.

This board has meant so much to me and there isn't a greater group of people anywhere. Be proud of the service you do to educate and inform but most of all love and support each other. David never posted but he was so happy to know I found this board to be my support group. No one knows what we go through better than this group.

Love, hugs and healing to all.
Sadly,
Priscilla

AnneCan
Posts: 3692
Joined: Oct 2009

Priscilla,

I can't tell you how sorry I am to hear this news. I will hold you + David in my thoughts. It sounds like David is a wonderful man + it is wonderful that so many people flew in to support you this weekend. Take good care.

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Priscilla, David is one lucky man to have you by his side. I'll be sending my best his way!!

Brooks

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Priscilla, I was my on my way to bed and decided to take another look and saw your post. My heart is heavy with your latest news on David. I can only imagine what you are both feeling at this moment of time.

MDA is one of the top rated hospitals in our nation and out on the cutting edge of medicine - I know if they felt there was another option, they would be pursuing it. After having gone to one of the best hospitals, I don't want to patronize you and say seek another opinion. I know you are both highly educated people, who know that you could always seek another opinion.

I've been told before, when my liver had cancer, that I too, was not eligible for a liver transplant due to cancer.

There are times when the body can no longer take the repeated pounding that treatments and surgeries take on each one of us. Sometimes, it is just like that - the mind might be willing, but the body just cannot follow.

I don't know where you guys are with this and whether there is something else that can be done. It sounds like David's battles with surgery were very intense. Like so many people here, I was hoping for such good news - you both sounded so positive.

I support you both in whichever route that you decide to take. The easy thing to say is to keep fighting - but I'm not there to feel and experience what you have both been through - to really know whether the time has or come - or time to regroup and try something else.

I certainly don't want to insult your intelligence - I don't have the answer to this question and have always felt it is a patient's option on how to handle their journey, after all they know first hand from going through it how much they feel about their own situation.

I'm not giving up if you are not - and will send peace and comfort from Arlington 260 miles South down I-45 to where you are now. My thoughts are with you both during this most trying time and I'm hoping for a miracle.

Your fellow Texan
-Craig

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I am sorry to read about the decline of David. I cannot imagine losing your husband but I know what it means to lose your best friend. My sister passed away from this awful disease in April. She was only 40!
Hospice can be a wonderful thing in that you know David will not suffer. But, regardless, it is heart wrenching!
My prayers to you and your family.
Marie

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

Priscilla,

I am so sorry that you have to walk down this path... My mom died at age 62 from colon cancer just this past March. Although those last few weeks were exceedingly hard to watch, it was the biggest privilege of my life so far (I'm 27) to be able to play a part in her care. Having your husband at home instead of in the hospital makes things easier somehow, and hospice is wonderful. They are kind, caring, and do an excellent job.

My prayers are with you in this time.

Sincerely,
Kelly

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Priscilla,

My heart goes out to you. I am so sorry it has come to this. Maybe there will still be a miracle. Although they seem to be rare, I know miracles do happen.
I'm glad your family was able to be there during this time.
I'm saying a prayer for your hubby right now as I type this.
May God give you both peace and get you through this difficult time.

Lisa

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

oops- I must have clicked it twice-it allowed me to erase my duplicate msg, but not delete it.

Devasted
Posts: 186
Joined: Jun 2009

Priscilla,

I'm so sorry to hear about David, can't sleep this morning..thinking of my own husband.
He is my best friend, too. I am so sad to hear what you must be going through, but David
is so fortunate to have you by his side. I'll be thinking of you...take care.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Priscilla,

My heart is breaking for you and David right now. I am so sorry. It sounds like you are surrounded by the love of some wonderful people. Know that we will be here for you in the time to come. You and David are in my prayers.

With aloha and prayers,

Kathleen

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Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

your in my thoughts and prayers. Sonia

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

so sorry, you and your husband are in my thoughts

michelle

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I'm sorry this has become so difficult. I pray for peace and strength for you all
mary

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Dear Priscilla, My words cannot convey how sorry I am to hear this news. God bless you and David.

- Cynthia

Erinb
Posts: 295
Joined: Apr 2010

Priscilla,
I am so sorry to hear this bad news. Your family will be in my thoughts and prayers.
Erin

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

We are so sorry to hear this news. Our thoughts and prayers are with you both as you go through this part of the journey

K

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

I'm so sorry to hear this. The damned cancer. I hate it. May God grant you strength and peace when you and your husband go through this.

Fight for my love
Posts: 1530
Joined: Jun 2009

It's so hard to see the ones we love so much and care so much on this board are fading.My heart is broken when I see news like this.You and your family are in my prayers.Take care.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

you and David are in my thoughts and prayers. I too hope for a miracle. They have been known to happen.

Love and Hugs to you both,

Holly

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

I am so sorry to read this latest news. As caregivers, we always worry should we have done this or that or done something different, gone somewhere different, changed doctors and the list goes on and on. This disease has a mind of its own and despite our best efforts things sometimes just don't go our way for our loved one despite our best efforts.

I wish you and David peace and comfort in the days ahead. Take care -

Tina and George

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

I am so sorry to hear that your husband is not doing well. Holding you and David in the Light for healing, hope, and peace.
~Aud

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

So sorry to hear, my thoughts and Prayers will be with you. May God give you the strength you will need to help you, help your husband. Margaret

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm so sorry to hear the news,I will be praying for you both.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Priscilla,

I'm praying for you and David. You're embarking on a journey that nobody wants to take. I'm so sorry that you and David are facing this, and I will pray for comfort for both of you.

*hugs*
Gail

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"......Friday I drove him back to MDA for hospitalization. Our surgeon
had the talk no one wants to hear. There were no more options. We
were told he was not a candidate for a liver transplant due to
the primary cancer. Short of a miracle it was time for palliative
care. It could be here at MDA or home..............................."

".......My only regret is we didn't get to MDA sooner before all the chemo
had damaged his liver and maybe his chances would have been better.... "

MD Anderson tells you there's nothing they can do, and you wish you
went there sooner?

Ok.

There are other places to go, other specialists to see, and other
options available..... why listen to MDA and sign into hospice?

I'm sure you like the people at MD, they really can be caring.

A very, very caring specialist sent another very caring specialist
in to see me while I was still in ICU/stepdown, to show me hospice
literature and hand me papers to sign.... Very caring!

That was in late 2006. I told them where they could file the
hospice applications....

The liver can regenerate itself, and it can get by temporarily with
a minimum of working organ. But the toxins can't continue to be
fed into the system because it overloads the liver.

You need to get other opinions. And you need to learn of other
options and alternatives. It's never too late, until it's over....
and it ain't over yet.

Give David my very best wishes for a full recovery.

John

Annabelle41415's picture
Annabelle41415
Posts: 6517
Joined: Feb 2009

My heart aches as this news about David. Just so sad that you and him are going through this. Thank you for sharing this with us as this has to be so difficult for you. Thank you for being such a wonderful caregiver and support on this board. My thoughts and prayers to you and David and family.

Blessings be around all of you! Kim

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

We are home in San Antonio today and are overwhelmed by the wonderful support and kind words you all have written. We love that you took the time to write. I read every post to David and he was amazed at how caring everyone is. I have told him my support group couldn't be a better bunch of people. And John, David is Ned now. It is not any cancer that is killing him. It is that the liver just is barely functioning at this point. There is not a surgical option or a food or any medicine that we know of that can reverse this progression. But his own body can. It is not impossible but very improbable. We are told he will fade with many days good and some not. But if his body turns this around and the liver regenerates, we would be beyond grateful. And he is committed to do everything his body will allow him to do. That means eating and staying hydrated and doing as much exercise as he can do. We aren't giving up. But we are being realistic. He had a wonderful chance of beating this cancer, if only his liver had done what we all expected it would. But we aren't throwing in the towel! We will kick hospice to the curb if his liver function improves. And we will continue blood work every week to see if the numbers improve.

Again, I can't tell you how much we appreciate all of you. We are rejuvenated from you and from being with friends and family this weekend. We have no family in San Antonio so it was great to be together. And both grown kids, Mike and Amy, came home with us and will be with us for awhile. I will keep you updated.

Hugs and Healing,
Priscilla and David

John23's picture
John23
Posts: 2140
Joined: Jan 2007

The following URL may be of interest to you:

liver regeneration and TCM herbs

I had some serious liver problems for years, that are of no problem
to date.

If you are in the mood for doing research, there are many
web sites that can be of help regarding the regeneration
of the liver.

DO NOT spend big bux on commercialized and over-hyped
garbage. When it comes to cancer, there's a scam born every
minute, and those people have absolutely no conscience.

I prefer TCM to anything else, but there are other alternatives
that can be beneficial, too. You have got to eliminate as many
toxins first, and it's difficult to do, since every medicinal product
is a toxin that the liver has to remove.

David will do fine, with some effort and a change of venue...

The liver -can- regenerate, and it will, if you give it what it needs.

Get better! Do it. Get better.

John

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

I will do some research for sure. It's a subject I know little about but what do we have to lose at this point. I will research and see how receptive David is. I appreciate your input. You are one smart man!

Manythanks,
Priscilla

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Priscilla, I am so sorry to hear this. This is so hard. I can only hope that you have some good days together still. I hope they can keep him out of pain and that you will have the help you need. Miracle I hope you get one. I hope for this everyday for my husband as well. My thoughts and love are with both of you. Paula

kersha
Posts: 63
Joined: Jul 2009

So so sorry to hear about what is happening. Do not second guess what you all did as regards to treatment. You would never know what you did was right or wrong. Just know that you did all that you could do with all the best intent. You all would be in my thoughts.

DLS5419's picture
DLS5419
Posts: 34
Joined: Jun 2010

I am so sorry. No one can understand completely how you feel right now. It must be so difficult for the both of you. I want to leave you with a little something though...I do not know if you are a believer in God, but I felt compelled to write it anyway. You are in my prayers.

My mom's testimony.

I remember praying the night mom was in the hospital. I had just turned 14 years old (2004). Mom had stage 4 tonsil cancer that had metastasized to her left lymph nodes and reached to her carotid artery. They had given her 22 treatments of radiation and 2 types of chemo...which almost killed her. That night I had seen mom in the most severe pain I have ever seen anyone experience; no meds could touch it. She was burnt from the inside out (esophagus all the way up to her lips were sores) and she was on TPN through a port. She was deaf in one ear and her immune system was completely compromised. They prepared us for the worst. She was only 40 at the time. My dad was in total emotional shock...understandable. But there was something so disturbing about that pain...I could not stand it. I went home and begged God for His help. I just begged for her to have a peace that passes ALL peace...a peace like the sound of angels singing...a peace only HE could give her. I prayed for Jesus to hold her...to take her pain away. That night I gave it to Him. I found this letter from mom to a friend who was losing a father to cancer. Here is mom's version the story and her miracle:
_____________________________________________________
My dear friend,
I did not know (and still do not know who) that you recently lost someone so dear to you. I needed to send you a special message.

We have known each other for so very long and I believe with all I am that our Father is so faithful he puts people into our lives even if it is momentary to remind us that He is carrying us through our pain. I know death. I was so close to death in May 2004. I will tell you that I had people praying for me I did not know. I was in the hospital and had been septic and in so much pain for 4 days. Now, I want you to read what I am telling you and know for certain of God's comfort for His children at death.

I could not see very well and had lost almost all of my hearing due to an overload of chemo and radiation. Nothing was helping and I was being treated for severe burns. I drifted off and woke up to music in the next room over. I was so surprised to actually hear music playing. It was Christian music and I figured I couldn't place the songs due to the level of drugs being forced into me. Each song was so familiar and beautiful, Brad. It did not stop all night. People came into my room and I didn't even care. I was so comforted by the songs being sung and the music of my neighbor. I couldn't see one person from the other because they had to dress in scrubs anyway. I rested all night into the next day feeling less pain than I had in days. I was so glad that the Dr.'s finally found a combination of meds to help me. When Dani and Van insisted I open my eyes to listen to them, I was a little annoyed because I was resting so well. I had lost my voice due to vocal cord burns, but whispered to each of them that I could hear the beautiful songs. I asked what the names of the songs were beause they were so familiar and I knew they would know them. I could not hear them try to talk to me, but remember wondering why they looked so sad when I was obviously feeling better and more rested. For the next 4 days I rested and listened to the beautiful choir sing and the melodies flowed through the room and quieted my thoughts and pain. Time was not important and I was able to focus on the love of my family without having to struggle with words. I thanked God for my neighbor in the hospital and prayed the person would get better, but also secretly wanted them to stay since I could hear music for the first time in so long.

On the 8th morning, I awoke in tremendous pain with no more music. Doctors were in my room with Dani and Van. Nurses were poking and moving me. I hurt so badly and was upset I couldn't hear. I whispered to Dani and Van who were very very happy (which made me confused)...... did my neighbor leave? I miss the music I told them. I need better pain medicine again I explained tears streaming down my face. They were making arrangements for home health care so I could be transported home. I thought to myself that they were crazy! I was worse!

Brad, I was better.......there was no neighbor. There was no music from another room. I had been barely responsive and my medicine had not been changed or lessened.

I was given the chance to hear just a little of the sweet sounds of Heaven. Death does not hurt Brad. To everyone around me, it looked very painful and upsetting. To me, I felt better than I had in months and rested wonderfully to the songs of angels and saints singing. It was as clear as an ipod with headphones. Beautiful and clear. Comforting and soft. The melodies were as familiar as my husband and child. When God let me stay, the pain of life returned. I am so blessed to be here and felt The Holy Spirit telling me to explain death to you. I listen when Christ moves in me. I owe Him!

You can count on prayers of your friends and the Love of your Holy Father. Death, although it seems bad to those around us, does not hurt.

Love,
Alison
___________________________________________________

I hope to all who get the chance to read this understand: my prayer was answered. The next day after asking for mom to have peace, I walked in the room to her smiling. It was a strange smile and she could only whisper what she was hearing...beautiful music. The angels were singing. My Jesus is the Prince of Peace. Our heavenly Father is with you every second...even on death's door. My mom lived. She survived. I truly believe she was meant to share her miracle and help others who are going through such difficult times. God is with you. As you walk through this valley, do not be afraid. He is with you.

Dani

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

So sorry to hear you are going through this difficult time, have faith that we will be together once again! Hugs to you and yours!

I believe!

dorookie
Posts: 1736
Joined: Jul 2007

My thoughts and prayers are with both of you..I pray God watches over all of your family.

God Bless
Beth

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

God bless, thinking of you. I don't know you, but I can feel the pain just by reading your post. . thinking of you and your family.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I'm glad that family is there helping you out and being there for you.
Just want you to know we haven't forgotten about you and are here thinking, praying and spiritually holding your hand.

SandyL
Posts: 220
Joined: Feb 2009

Hear what they have written to you and know that I am praying for God's will to be done.
And hoping that His will is healing your David. I surely hope that for you and your family. Know that you will remain in our thoughts and prayers.
Sandy

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