Please Help

My husband is very ill with cholongiocarcinoma. He has metal stents for drainage. He has been in and out of the hospital so many times this past year with blood infections.  Two times almost didn't make it. He has struggled so hard. It breaks my heart to see him trying to overcome this. Recently after bouts of vomiting up every meal they found it had invaded the stomach thereby preventing the food from leaving the stomach. They did a bypass from the small intestine to the stomach to allow for drainage. That surgery left him with 35 lb loss of weight, severe pain in his stomach and no appetite, and first constipation, then diarrhea.  I feel like I am watching him die before my eyes. He is so weak, no energy, out of breath. He also has diabetes and heart failure. Lately with the help of medication he had started to eat very small amounts of food only to be in severe pain, but still he struggled. Last week he had an EDG to find out what the pain was.  Dr. said he had bile in his stomach and some food.  Again more medication to allow dilation and drainage.  I don't know why they didn't drain the fluid.  Last night he started vomiting. Over and over.His Dr. is once again on vacation. I know when I call in this morning they will tell me to go to ER. The ER here is jammed pack full of people and you wait hours and hours. Last time 7 hours before seeing anyone.He is too weak for the ER. My husband is adamant about not calling an ambulance. He gets very upset, to the point I think he will have a heart attack. Same with calling the Dr. A little while ago he said to just leave him alone to sleep. If I don't do something he will die. 

On 1/31/2008 JamiefromGA wrote:

Where are you located?  Which hospital (local or research?) are you visiting?  Has he had any chemo or radiation?  It is confined to his bile ducts or other organs also?  How long since he was diagnosed?

Jamie,

Based on your questions, it's apparent you didn't fully read and/or understand her husbands issues. Based on her detailed explanation of issues, where he is located, which hospital he is admitted to, whether he has had Chemo or Radiation, and whether he has cancer in the bile ducts or other organs, as well as how long since his last diagnose...means nothing, hear me...IT MEANS NOTHING. 

Her husband is very ill and requesting her to answer your questions is self serving. 

You have your hands full already with your mother...if you want to be helpfull, get your mother to the Mayo Clinic, ASAP.

I'm sorry for my bluntness...but bile duct cancer is a serious business and in most cases the patient does not survive...that's how serious it is.

Hope you are not offended by my pro-active statements...

Leonard 

No chemo or radiation. Metal stents were placed at Mayo in AZ.   I won't list all the procedures he has gone through. Cancer started in the bile ducts and spread to the abdominal area. Weight loss, jaundice, loss of appetite, and on and on.

Diagnosed in September 2006 with 3-6 month prognosis. Surgery not possible.  Chemo suggested at this point in the hopes of preventing further spread, or to slow it down and shrink the tumor. Hasn't started chemo yet, not strong enough to handle it. Although in the beginning Dr. said chemo and/or radiation does not offer much success.  Today his GI Dr. said if he planned on starting chemo he should do it now.  The oncologist said he would start it as long as we understood that as weak as he is now, chemo will only intensify the weakness and lack of strength.

I called his GI Dr. and begged them to squeeze him in today. They did. Dr.said the pain is the disease. As for the vomiting he has recommended a liquid diet, along with the protein drinks for nutrition.  And he gave a prescription for a pain patch.  Currently he is on Oxycontin and Lortab. Neither of them gave him any relief from the pain. Hopefully the pain patch will help

Watching someone you love fight this hideous disease is dreadful.  There is not much I can do except love him and make sure whatever I can do to make him comfortable. My prayers go out to everyone on this message board

Irene

Irene,

I am deeply and sincerely sorry to hear what you're going through.  I completely understand the emotional ups and downs.

I read both your messages feel for you.  When my wife was diagnosed with a Klatskin Tumor and was given tops 6 weeks I didn't know what the hell to do.  She was very lucky to have two surgeons at UCSF Medical Center care for her...she is currently doing very well. Two drain tubes, we flush twice a day and she visits UCSF once a month to replace the tubes, as of today no fevers or body chills...but prior to this and for approximately three years she was in ER at least twice a month, maybe a little a less.

With regard to your situation, stay focused on quality of life not quanity.

What you husband is dealing with is very serious and I'm sure he is well aware of this...the only thing you must do is show strength and patience, no crying in front of him, save that for when you are along and I know what that's all about.

Again, I am very sorry, take of yourself, eat and get enough sleep, I know, you don't have to say it...it's eaiser said than done.

God Bless you and your entire family.

Leonard from Alamo, California 

Leonard

Thank you for your understanding and good advice.  I think the Dr. was saying "This is it, there is nothing else to offer."  I asked him if the liquid diet was only until we felt his stomach had healed enough to handle solid foods, and he said that the liquid diet was to be his diet - from now on. Then he went on to say if chemo was in the plans better start it right away.  If I am reading between the lines I would think he was saying, without saying, not a whole lot of time left.  I got such a sickly feeling in the pit of my stomach.  Not that I haven't faced up to the dreadful possibility, but I suppose I have been thinking that's way down the line.

Irene

On 1/31/2008 JamiefromGA wrote:

Thank you for being blunt - - you're right, I must not have read everything and I was being insensitive by asking those questions.  I just wanted to see if they had an opportunity to travel to large hospital - either way - it's probably too late for them.  Thank you again.  No offense taken.

Hi Jamie,

Thank you...I really hope things go well for your mom and you guys can get to the Mayo and deal with the bigger issues.

My best and warmest wishes go out to you, your mom and your entire family.

Keep me posted...I know you are going through a lot.

 Leonard 

  Be a wife to him & say you love him every chance you have.  May the Lord give you strength through this time. 

   Those pain meds are not strong enough.  Get Hospice Care to come to your home.  They are excellent in pain management.  No need to go to the ER or hospital.....they come right to your home.  Keeping your dear husband's pain under control will make all the difference.

   I have stoppped my 9 months of chemo.  Believe me, it is not something for someone whose strength is weak.  The chemo will only give him more pain & discomfort. Keeping him comfortable should be the priority now.

8MJM8

Thank you for responding.  The Dr. put him on a pain patch to be changed every 3 days and its working a whole lot better than the pill form of pain medication.  It allows him to eat without the severe pain that accompanied a meal.

Irene