Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Glad to here they are getting the ammonia levels under control.   I hope they can get everything sorted out and he will be able to come home tomorrow.   A $430 pillow????? Wow!  It sure better do wonders.  smile

Keep on kickin' it and let us know how things are progressing.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, glad to hear they can get to the problem now and Tom will be coming home. 430? Better create some good dreams with that one.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Great to hear that the docs have figured out what was going wrong for Tom and that they are getting his ammonia levels under control. And I hope also that they can get Tom on a new antibiotic and that he gets home with you as soon as possible.

Wow! $430 for a pillow??? That must be some kind of magic pillow! I sure hope it works!

Best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Tom's chemo has been cancelled because he does NOT HAVE TUMORS in the liver, only lesions which are caused by infections.  And the MASS is GONE!   Me thinks I will be having a chat with the head of the hospital and will be getting some answers...I think I will be requesting a refund for my insurance company because they made him go though un-necessary treatments for tumors. Hummm, can you tell that I'm boiling mad at this point? Maybe I should not go to the hospital today????

And I'm not kidding about the price of that pillow!  It's for him to sit on so his bedsore can heal.....unbelievable eh?


Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,try ebay for the roho cushion,it will save quite a bit         Janet

Re: My Husband and Cholangiocarcinoma - Part 2

Thanks Janet but it's already ordered and our insurance will cover it at 100% and I imagine it will be discounted quite heavily.

Re: My Husband and Cholangiocarcinoma - Part 2

So here is the latest...Home Health care is coming out tonight at 6pm to show me (really?  me?) how to access Tom's port to administer 3 different antibotics that have to be done 3 times a day!  One of the drugs takes 4 hours to administer.  I guess he will be hooked up to an IV continously for the next two weeks. 

I can't believe that the poor man actually trusts me (really?) to be able to do this!  Ok, I am WOMAN, hear me roar!!!  I can so do this.  And I really think that I need to change careers and become a RN!  Except that at almost 59 years of age, all I really want to do is look forward to retirement!!!!

Scared?  Scared as hell, but really it should be no different than three years ago when I did all of his IV antibotics through the PICC line he had in his arm! Right?

And the fun never stops!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

Yes, you are strong.  You can do this and I know that Tom trusts you as you have been right there for him through all of this.   I will be thinking of both of you and hoping everything works out and goes smoothly.  Just keep "KICKIN"!  smile

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Oh boy, here we go again!  These two IV antibotics that they have Tom taking are really doing a number on him.  He's gained 11 pounds in less than a week.  His Doc says to go to the ER to see if they will drain the Ascites off his belly.  He won't go inpatient he just wants to close his eyes and never wake up.

I've got to convince him to let me take him to the ER.  While he was inpatient they did see fluid in his abdomen, but they said it wasn't enough to drain!  Now of course with all the IV's he's been getting (between the hospital and now at home) it's gotten worse.

Just another twist in the road on this journey with CC!  Gotta take the bull by the horns and drag him out to the car I guess!

Sorry for sounding 'negative' here, but it just never stops!

HUGS!!!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret.....Don't worry about the negative thought comment.  You and Tom have reason to complain.   The parenthesis can be done on an outpatient basis.
I am crossing my finger for things to get better real soon.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,
I'm sorry that we men are such a pain in the butt about hospitals. Afterall, men are just large boys as you probably know. Several times Donna had to literally drag me out the door to go to the ER with the comment "Well, I could let you stay home and die..." As God said in Genesis, "It is not good that man should be alone" so he created woman to keep us from avoiding healthcare alltogether. Thank you God and thank you ladies!

Blessings!
bob

Re: My Husband and Cholangiocarcinoma - Part 2

Had not heard the later about woman and healthcare, but couldn't agree more with your statment. 
I just love your sense of humor.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, let us know when you graduate from Medicine 101. After what I have been through this last week, I can so sympathize with you even more. You are getting tired and with good cause. Take some deep breaths and get that strength back that we all know you have. Good luck with it all. Come on girl, give it that old Lombardi try.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Bob - your post made me laugh this morning!  I'll relay that one to Tom.

Currently he does not have enough fluid in the abdomen to drain it.  They could nick the bowel if they try it when they don't have a clear pocket to tap into.  So it'll be probably 1- 3 days yet.

His white blood count is down to 15,000 (was 30,000) so that is good!  Ammonia levels are fine and the liver function is fine (two of the things I was worried about).  No obstruction in his intestines or bowel. 

Currently we are in a holding pattern.....so Lainy I've got my big girl panties on and will continue with the roller coaster...

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Everyone, I understand about thinking you've majored in medicine.  My husband was sick for the last 25 years, I was caregiver.  Yes, I put iv's in, I changed bandages on his infected leg the nurses were scared to touch.  This job was robbed from me on Feb. 17, 2010, I was caregiver and wife then the next moment I felt like I was nothing.  Wayne had 10 litters of fluid taken off one time and 16 litters another time all out patient.  Blood transfusions were on a weekly basis.  I would do it all over again in a heart beat if I could bring him back, and he had no pain.  This man lived with constant pain for 22 years hurt at work, ganegreen, amputation, blood clot in lung, sarcoidoisis, open heart surgery, blood clot in kidney, then to top it all off cc.  He very seldom complained about hurting, he took very little pain medication.  I would be glad to be able to do it again, because now I'm alone, my Mom passed away last week.  I found a note I wrote to him a couple of months ago in it I state; You have gone off to see Jesus I have been left to pick up the pieces.  How do I do this, after so many years of we, there is no I in we.  People say they understand because they have lost someone dear, but unless it was your soulmate the person you were to grow old together you could never understand.  I just hope this month passes by very fast.

Terry

Love to my Wayne for 36 years
I'm not a widow, I am a wife
We are only apart for heaven's sake
You are waiting for me at heaven's gate

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Terry - Your message makes me so incredibly sad.  I do not understand what it is like to lose your soulmate.  But I do know what it is like to lose someone so very dear to me, since I lost my son, John.  I try very hard to spend each day doing something to honor his life....to pass along the goodness that was in his heart....to remember that his biggest fear was leaving behind me and his Dad, and that we wouldn't be able to cope.  So -- as my tribute to him -- I cope!  Some days I do it better than others, but I do cope.  The first year after his loss was hard, but I was numb.  This second year has seemed even harder -- but I try each and every day to pull myself up by the boot straps and remember the love he brought me each and every day of his 30 years in my life.  Can you try to volunteer somewhere that would help you to fill some of the void in your life right now?  You sound like an incredible human being with so much to give....and I think your husband would want you to be fulfilled again.  I hope you can find some peace....it takes a long time ......Hugs - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: My Husband and Cholangiocarcinoma - Part 2

Oh Terry,

You are so right.  It does leave a terrible void, doesn't it?  Since Jim passed away only 7 weeks from when it all started and was relatively healthy until then,  I was only the caretaker for those 2 months and think I now know more about this disease than most doctors, but you are so busy taking care of everything and then just like that it is over.  As you know, my situation is much the same as yours.   I try to keep on going and doing what I think he would want me to do and I like the thought that coping is a tribute to him.  Thanks for that thought Nancy.  Yes, I too believe it takes a long time and never really goes away.  I think we just learn better how to cope with things and keep on going. 

Everyone take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Terry:

I, for one, would not ever 'think I've majored in medicine', nor do I think that others on this forum think that way. 

When we post on this site we do it not only to get rid of our frustrations, but to possibly help others in their journey and to get the support that so many caregivers need to go through the day to day things such as changing bandages, flushing ports or picc lines, administering antibotics, being an advocate for the patient, encouraging our loved ones to eat, drink fluids, take them to/from their never ending appointments with doctors, oncologists, interventional radiologists for chemo, ctscans, emergency rooms, etc....

I also would not trade one day of Tom's illness because "For Better or Worse, in sickness and health" means a lot to both of us.  I know that he would have been there for me if it were he that was the caregiver. 

Why do I do it?  I do it out of love.  Do I get frustrated?  Yes.  Do I get emotional? Yes.  Anyone would, even you have to have experienced those feelings while you were caring for Wayne.

Perhaps you could benefit from counseling to help you through what I can only imagine has to be very long empty days without your soulmate, along with your  grief and sadness.  That has to be overwhelming for you.  You are correct, there is no "I" in 'We'.  That has to be hard, to loose your soulmate after being his caregiver for such a long time. 

And I know that one day I will be in the same position as you, Darla, Lainy and so many others on this forum who were the caretakers for their loved one.  You are not alone here, none of us are alone in this journey.  And that is why so many of us have joined this site, for the caring, compassion and love of others who are experiencing the same journey that so many have undertaken, and that so many have 'lost'.

My heart goes out to each and every one of 'us' who have lost a loved one to CC, or to any other disease.

My thoughts and prayers are with you.

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

I found a very unique volunteer job for someone who loves others...a volunteer "rocker/walker" at the pediatric ward of our hospital.  I was admiring a tiny bundle of love and expressed my thoughts to the gentleman giving the bundle  a walk.  He shocked me when he replied it was just his night to be a rocker/walker to babies who have no one.  He went on to explain that often parents are working or perhaps ill also and the tiny ones need human contact and then he grinned and said he loved it!  The little bundle squirmed and he said try it sometime.

Perhaps you could do something for a child that would give you something to hold, comfort, and care for for a few minutes.  It would be a way to help without replacing your Wayne and could give you comfort.

I have thought of this often, I plan to do something after I am relieved of my caregiver job because I can't stand the thought of 24 hours of missing my loved one.  There has to be someone I can hold and cuddle and they would be providing me a much needed warmth with my replacing part of my "empty hours" with someone who needed me.

Re: My Husband and Cholangiocarcinoma - Part 2

This was the job I always wanted. I wanted to rock the babies. Thanks for sharing.

Re: My Husband and Cholangiocarcinoma - Part 2

Dearest Terry, I now can so profoundly relate to what you are going through. I lost Teddy 5 nights ago. The first step of moving him from home to Hospice was so hard, I mean hard. I had to let go of someone I loved more than life and let others take over. To my dismay and regret they did not do their job and I watched him suffer needlessly. But with that said, I have to try and push those thoughts back as I have tried so valiantly to make this last 6 months our precious time. I did not want to look back and see only a bad monster, I wanted to make new memories that would carry me forward. I know that when I can get last weekend pushed back the wonderful memories we have made will come forward and I will be strong and  be happy as that is what Teddy would want. His last words to me were "I love you, BE STRONG" and that is now my mission.  I hope you find some peace soon. You are really not alone. We all care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

72 (edited by mlepp0416 Fri, 17 Dec 2010 10:38:45)

Re: My Husband and Cholangiocarcinoma - Part 2

All:

Tom finished two of his antibotics yesterday (YIPEE) and will be on the third one until the 23rd of December.  Wow, I won't know what to do with myself!!!  Only one 2x a day, EASY BUTTON!!!!

He is looking and feeling MUCH better!  One has to wonder just how long these infections were running rampant in his liver.  Long enough to make the man feel that he was on the edge of the beyond.  Hopefully they got it right this time.  He is currently at the doctor's office so I'll know more once our son in law brings him back home...

And after a very nasty phone call to his PCP's office they now have him set up for a once a month tube exchange!!!  That should also help with recurrent infections.

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,
So happy to hear that Tom is feeling better! Hopefully those infections will become a thing of the past.
Hang on to that fighting spirit, and keep on kickin!

Janet

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

Glad to hear Tom is feeling much better and that you now have things back under control.  smile

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Great news about Tom!! so glad he's feeling much better.

Love and hugs

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".