Re: My Husband and Cholangiocarcinoma - Part 2

Spent about 3-4 hours in the ER last night.  Tom has developed Ascites and his belly is very swollen with fluid.  They did not do the parenthesis last night because the ER does not have the 'best' equipment.  Instead, since he was not in duress they are getting him scheduled for the procedure sometime today.  I will be happy once it is completed and his belly looks more 'normal'.

He has so much fluid in his system right now that it's starting to back up into his lungs and he is gurgling with each breath he takes.  I'll start work at 7:30 am and let my boss know that I have to have some time off to take him in for his procedure.

On the flip side - Papa Tom and I are not only going to be grandparents again (baby due April 2nd) but we just found out we are going to be GREAT grandparents (baby due in June)!  I'm just not ready for the G-GMa part!  But it will be fun!

Go with God and KEEP KICKIN' THAT cancer!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,
I am sorry to hear about Tom's ascites. Has he had it before? Poor guy. My heart goes out to him. Congratulations on the babies. How wonderful!
Take care and I hope Tom will be feeling better soon.
Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Now Margaret, you tell Tom that I said they sell Santa suits so he doesn't have to go filling his tummy with water!!! And its too early anyway, Thanksgiving is first!
Seriously, I hope everything goes well and he is back home lickety split. By the way I am a GGrandma on Teddy's side and it's just always so wonderful to have babies around. Hope all goes well!

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,

Sorry to hear about Tom's ascites and your visits to the ER again. Hopefully they will get the draining done today so that Tom's belly can get back to normal again and that he can get back home also. And congratulations on becoming grandparents again, and also for becoming great grandparents! What great news!! Time for another tatoo perhaps???

My best wishes to you both,

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

Margaret....I am so sorry to hear of the latest developments with Tom.  Tomorrow's procedure will make him feel sooooo much more comfortable. 
You will keep us posted, right?
Two new little ones gracing your life within the next few month; how lucky is that.  You will keep us posted on this too, right?
All my 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

Thanks everyone!  Procedure went well, they couldn't get all the fluid but got some out.  He's feeling a bit better.  This is the 2nd time he's had to have it drained off.

And YES I'm excited about the babies!  My 2nd daughter is the one expecting and Tom's first born grand daughter is expecting the first great grandchild!  And my younest daughter and her husband are trying for another and it doees not matter as long as I get a girl!!

Love,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

All:

Tom was admitted to the hospital today with what they are calling a lung infection.  His doctor told him he looked 'Gray' and did not like his color.  He is on two high power antibotics and breating treatments.  He is where he needs to be.  We discussed the 5-Fu chemo that he is on and since it appears to be too tough on Tom, she is considering going back to the Gezmar/Cisplation combo as he tolerated that better than most people do.  And she also explained that at some point no matter what they do/try, the cancer can get really aggressive and at the point no matter what or how strong his will to live and beat this cancer, when they feel that there is nothing more to be done, we will move to Pallative care and hospice.  She is glad that he got an additonal 2 years and for the most part (with some ups and downs) it was a pretty good two years.  She is pleased with his progress up to this point and after the upper respioratory issues are resolved, she will meet with Tom and I and come up with a game plan, she wants another MRI/CTScan to see what that new tumor is doing. 

Go with God and KEEP KICKIN' THAT cancer!

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

Sorry to hear this news, keep us posted. I am also wondering if there could be some kind of rewards club for CT and other scans. When you have so many scans you get such and such reward and you move up in rank like we do here on the board. Tom is surely some kind of Scan Master at this point so here is hoping for good results.

Patty

Re: My Husband and Cholangiocarcinoma - Part 2

Thank you Pam.  Wow I went from a Senior Member to a Legend!  Doesn't that make me feel 'old'.  Going to call the hospital in a few minutes to see how he did overnight and make my decision if I'm working today or going up to the hospital..

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret, I feel so bad for the Tom/Margaret duo! But as we all know comfort is the key here. Speaking of reward clubs (Patty) he could also get one for tubes!  Take care, we are all thinking about you both a whole lot.
How about that? You are a Legend, it does have a nice ring to it, not all legends are old.

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

Margaret
I'm sorry to hear that Tom is back in hospital and I hope you will have him home soon.

Your a real legend here.

Take care

Gerry

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret....Legend or senior member you and Tom deserve the accolades.  Finges are crossed for the nasty infection to respond to the treatments.
Know that a tidal wave of love is heading your way.
All my 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,

Sorry to hear of the latest turn of events.  Know that I am thinking of you and Tom and hoping for the best.  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

Margaret,
I am sorry to hear that Tom is in the hospital. I am thinking of you often.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

290 (edited by mlepp0416 Thu, 17 Nov 2011 05:44:51)

Re: My Husband and Cholangiocarcinoma - Part 2

Thank you everyone. 

Two days ago, Tom said "It's time to call the kids" - he didn't think he was going to make it through the night. 

Now we are making arrangements for a hospital bed so that he can come home.  He is ready and has made his peace with God. 

He's righted a wrong that happened late last year and now has healed a rift between his niece and nephew.  He spoke to both of them last night on the phone.  I had reached out to the niece and she called back and wanted to talk to her Uncle Tommy.  Both were crying and telling each other that they love one another.  Then about 2 hours later the nephew called and Tom asked him to forgive him.  The call ended on a positive note with both of them crying - he tries so hard to "Keep the family together".  I was so proud of him last night. 

Tom says that now he can rest in peace .   We are making plans for Pallative care and then hospice.  This is so hard but I'm staying strong for him. He needs me more than ever now.  And I'm still hopeful that this will turn around...

Go with God, I love all my CC family.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, I am so very sorry to hear you are calling Hospice but Tom will be so much more comfortable. Teddy loved his bed and I set it up in the living room which was comfortable and bright for him as well as visitors. Not to mention the big screen TV. Making Peace with God and others, sounds so familiar and don't sell yourself short. You will be strong just like you have been all along this terrible journey. It's not over yet and now you will spend quiet, quality time on your Honeymoon as Teddy called it. We are here for you and if you need to talk let me know.

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

Dea r Margaret,
My heart breaks for you and Tom. I am glad Tom has found peace with his niece and nephew. You have been such strong warriors against this disease. You are my heroes! As you face this difficult time, please know you are not alone. I will continue to pray for both of you. I hope Tom will be comfortable and pain-free in his new bed. God bless you both.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

My thoughts and prayers are with both of you and your families.

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

Dear Margaret,

Such a bittersweet reuniting of family members.  I'm glad it happened for all of them. 

Having Tom home with hospice care will be a relief for you.  You can spend 24/7 with each other, and hopefully with the meds, Tom will be comfortable.

Thinking of you both,
xoxo
Diane

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, Tom is going to beat this! Let's kick CC right in the face! Don't loose hope. Sending prayers and hugs from New Jersey, let the fight begin...

In loving memory of my beloved and cherished grandmother who fought until the very end. Loving you forever abuelita...

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

I am sorry to hear this latest news from you. I know that hospice will help make Tom as comfortable as possible and I am glad that he has spoken with his niece and nephew. You know that all of us are here for you.

Thinking of 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.

297 (edited by Cherbourg Fri, 18 Nov 2011 08:36:46)

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

I'm sending prayers to you, Tom and your family.  You have faced this monster of a disease with dignity, humor and an abiding love for each other.  I stand in awe of your determination and strength.

These are precious moments and times. 

Sending hugs, love and prayers for strength....

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret and Tom....know that tons of love is heading your way.
Hugs,
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

Maragret and Tom,  I, too, have followed your posts and courageous battle with cc.  Tom is an amazing man and will always be with you!  I pray for peace now and many memory making days for the both of you to cherise.  You are both loved by so many family and friends. Pam

Re: My Husband and Cholangiocarcinoma - Part 2

I'm very sorry and sad to read your latest post. I'm thinking of you both and sending hugs from Australia.
Take care
Elsie