Re: My Husband and Cholangiocarcinoma - Part 2

I promised I would write and let you all know the words that my son Gilbert spoke at Tom's funeral service.  He did not save it on the computer, but I remembered that he'd given me a copy and I found it in the car today.

"I was about 25 when I first found out that Tom was dating my Mother.  I was wondering if this man was the right person for my Mom.  Was this man going to treat my Mom right?  At first, I did not know Tom, I really didn't understand him a whole bunch, but Mom asked me to give him a chance, well, I did. 

During the time that I have known Tom, he has accepted me, my wife and my children as if we were his own blood, no questions asked.

Tom has shown me a gentleness and caring in a way that I always thought a real father should show to his family and friends.

Tom was a very kind, gentle, thoughtful, caring and respectful person.  Tom was the genuine "Hey, how ya doing and what you up too, can I give you a hand kind of guy.  He would talk to anyone, it didn't matter the color of skin, height or social group.  He just wanted to meet as many people, and do as many new things in his life as he could.  He was very intoxicating to be around.

Tom has touched the lives of many, many people.  I'm sorry to say that many will not be granted his wisdom due to his early departure from this world.

Tom, I want to thank you for teaching me to be a better father, husband and friend.  We all will miss you, on this earth, but forever you will be in our thoughts and hearts.  But for now, Hey, catch that fish, kick back and have that beer, take a walk in the woods, relax my friend, my father...you have earned it.  We will meet again in the future and will play a game of cribbage!"

---------------------

Gil's son, Michael, 12 years old is having a hard time dealing with Papa's passing.  Papa was the FUN Papa (and I am the FUN Grandma) and Michael loved spending time with us.  Papa was the only Papa that Michael knew since he was a tiny infant when Tom and I re-united and married.

Our 4 year old grandson, Alex is going to build a rocket to fly to Heaven and bring Papa back for me.  He decided that a rocket would be faster than building a ladder!

Little 28 month old Thomas does not yet understand why Papa is not at Ama's house.  I gave his Mom a picture frame with 4 pictures in it. Pictures of Papa and I along with some other photo's so that Lil Tommy will have pictures of Papa in his own  house.  Each night that Picture frame goes with Tommy to bed, and placed on a chair next to his toddler bed.  He and his mom say his night time prayers that end with "Good night Papa, watch over me as I sleep" and Lil Tommy has to give Papa good night kisses and if Mom forgets, he say "Kizz Papa?"

I cried this morning when I looked out the window and did not see Tom's truck in the driveway. His truck went to his son Tom Jr.  I knew it was gone as he'd picked it up the night before, but it hit me hard when I didn't see it in the drive.  Oh, such odd things that we get all teary eyed about.  I'm in no hurry to go through his clothes or to change anything in our bedroom.  I know that in time it's a chore that I will do, but for now, having his clothes in his dresser and in our closet keeps him close to me.  I wore his fleece that he was wearing when he passed, hung his cruifix on the wall beside his recliner and it brings me comfort.

Love and hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

I thought that I'd posted this on this site but can't find it so I apologize, and will post it now.

I have to let everyone know that the funeral for Tom was wonderful, emotional, sad, full of joy, bittersweet. There were a lot of family and friends for the Wake on Friday, and the same for Saturday for the service.

The Deacon that did the service said "When I do a funeral service and see such a large group of people in attendance such as I do today, that tells me that this man was a much loved person who touched many people during his lifetime.

Our grand daughter Kaylah, 16, (from Iowa) sang "Amazing Grace", our daughter Brianne sang "Go rest high on that Mountain" (Vince Gill) and Tom's and my fishing buddy Dennis did the Eulogy.

The Deacon and Dennis are brothers and before Dennis even spoke, Deacon Mike had to get a few 'digs' in for his brother with statements such as "Tom must have been a heck of guy to get a guy like my ugly brother to cry while writing the words he wanted to say" and "I have to pick on him so that he gets mad at me so he won't cry today" and at one point said "Dennis, do I have to pinch you?"

The words that Dennis spoke for the Eulogy are as follows:

I met Tom approximately 16 years ago, you know how you meet some people and they have this smile that makes you feel like you could just hug them? Tom was one of those people. He invited me to join him at Whitefish Lake in Canada for a week of fishing. That became a yearly adventure for 14 years. Tom, I am sorry to have to say this but you were NOT the best fisherman. Marge seemed to always 'out fish' you. Now we pray that you are fishing up in heaven with the best fisherman of them all: Our Lord, Jesus Christ.

I pray that I may live to fish until my dying day. And when it comes to my last cast, I then most humbly pray: When in the Lord's great landing net and peacefully sleep. That in his mercy I be judged big enough to keep. Tom was always there. If that meant driving all the way to Thunder Bay and back for a part for SOMEONE ELSE'S motor; Tom was there.

Our Lord says to Love thy neighbor as thyself. Tom showed all his neighbors love through his deeds. Look at what he did for his family and friends at White Clay Lake.

I feel Tom was the happiest when he reunited with Marge. She became his strength through these hard time. Thank you Marge.

This is a shotened Version of Lina Ellis's (The Dash) if you have already heart it, please bear with me.

I read of a man who stood to speak at a funeral of a friend. He referred to the dates on his tombstone. He noted that first came th date of his birth 1947. Then he spoke of the followng date with tears, 2011. But he said, what mattered the most of all was the DASH between the years. For that dash represents all the time that he spent alive on earth. And now we all know what that dash is worth. I believe Tom lived that dash to the utmost as a Husband, Father, Grandfather and Friend.

After the service, there was a processional out to the mausoleum for his interment. The processional was at least 40 cars long. The Military Honors were beautiful, the  gun salute - Three men, three guns and each fired 3 shots.The Taps can do anyone in and the folding of the flag and presenting to the spouse (me) was beautiful. As we watched the casket being lifted into the Crypt I said "And the battery on the lift goes dead" and prayed that it would not. But as they started to lift the  stone to place over the Crypt, the battery went dead, and they had to get a different lift to put the stone in place.

We had a wonderful meal afterwards and told lots of fun stories about Tom and incidents in his life. One of the funniest was the Oyster incident. One of Tom's friends had given him a can of Oysters, which he'd forgotten was in his truck. We were at White Clay Lake where our cottage is and were building an addition for one of the campers. We had a fire for burning all the scrap wood. Tom saw the can of oysters in the truck and grabbed it and threw into the fire. I told him that I didn't think that was such a good idea. Needless to say about 10 minutes later, just as Tom was walking past the fire, we heard a boom and there was my poor Tom with stinky bits of oysters all over his hair, face, shirt and pants. He just stood there with such a funny look on his face! And did he smell awful.

All in all it was a wonderful day, yes, it was sad and bittersweet. My family has surrounded me and although I will have some very sad days, I know that I will find peace and I am proud to be his widow.

Hugs and love to everyone. And you know my Motto: Go with God and KEEP KCIKIN' THAT cancer for my Tommy!

LOVE,
Margaret on behalf of my Tommy.



P.S. My son Gil and daughter Brianne spoke about Tom at the funeral and I will post their words later.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, I know we don't really know each other, but I feel so deeply for your loss. From all your posts you have done everything you could possibly do. You are so strong to be able to fight this with Tom for so long. I pray  that a peace and comfort will come to you. I can't even imagine how hard it must be without your husband. I'm sure it will be my reality soon too.

Re: My Husband and Cholangiocarcinoma - Part 2

Dearest Margaret, you are wonderful and I just would like to say, don't plan, just do whatever comes naturally and honestly things do start to ease up. I love the way the kids still think of their Papa even though they are much older and I love the way some things hit me lightly and some things hit me so hard as what kind of women would we be if they didn't. I had a total and complete meltdown Thursday morning when I opened ip the Fridge and saw all the prep for Thanksgiving but no Teddy to cheer me on. Sunday night my 3 guests from Milwaukee and I went to our 'favorite'
Italian restaurant and the owner sent over an appetizer for 5 not 4. Then right after dinner I get a call from my Granddaughter as she was driving back to College and she said, "Hi Grandma. I am 40 miles from Campus and I am so sad as I thought about Papa all the way back and I miss him. Then on her Ipod came a song called "I'll Always be With You". These wonderful moments are already happening   for you and that is what gets us through. Take care you are much loved!

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

I want to thank everyone for their support.  I ended up in the ER on Thursday night with a blood clot in the left leg.  Now having to give myself shots in the belly, three more to go and am on warfarin - probably for the next 6 -12 months.  When it rains, it pours.

I'm doing pretty well.  The hardest thing so far has been just getting myself motivated to do something - my brain wants to just sit here and think about Tom and I find myself having to give myself one of my 'wifely' talks.  I cleaned the entire house one day and between today and yesterday I got the Christmas trees decorated.  Tomorrow I go back to work so that will keep me busy during the day.  So far the nights are the worse...I find myself just doing anything and before I realize it, it is 2:30 am and I'm still awake.  That will be stopping today cause I have to be up and at 'em for work now.

I am actually handling this better than I thought I would.  I think part of me is feelin relief that he is no longer suffering.  Part of me is still in shock that we lost the battle. And part of me does not want to believe that I will never see his face of feel his arms around me again.  But in spite of all that I am relieved that his pain and suffering is over.

Go with God and KEEP KICKIN' THAT cancer.
Margaret

331 (edited by Pamela Sun, 04 Dec 2011 16:07:36)

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

Like I've said from the first day I spoke with you, You are SuperWoman. I am sorry to hear you have a blood clot. Where in the world did that come from? I hope you are feeling better. I do think when you go back to work your spirits will lift and take your mind off things. I am sorry you have a difficult time at night. I'm sure Tom is watching over you from heaven and misses you too. I am so glad he is no longer in pain or suffering. Take care Margaret, and hope to hear from you again real 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

Dearest Margaret, don't sell yourself short, it sounds like you are doing fine under all the circumstances. A blood clot! That is not accepted! Hope you are feeling better.  I have had a severe bout of ulcerated colitis!!! Now that I think back it was coming on this whole last year and boy, did it get out of hand. I have been a prisioner in my house for months but am finally seeing the rainbow at the end of the storm. The steroids are killing me but I see the gastro guy Tuesday and perhaps can start weaning me off. We sure pay heavily for stress! I have decided its time to destress from everything. I think working will be good for you and my goodness with all going on you got your tree up!
Margaret, I don't know if Tom had a favorite cologne but in the beginning I used to dab a little of Teddy's on his pillow. I slept like a baby then, feeling and smelling his presence. Sending you a ton of hugs and love.

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 am so sorry to hear of the latest developments. Don’t you just wonder at times as to how we are to process all the things happening?   And then we find within us the unexpected resilience to life – nothing set in stone rather, something from deep within us.   

Our Dr. Giles had a profound effect on me when he mentioned the following:

"I would gently suggest to you that the depth of your feelings are a testament to the significance of the place your husband has in your life. The magnitude of your pain and devastation signifies how precious he was to you--and that's a good thing. Please do not hurry through this extremely tender time. Your sorrow is a result of the loss of a good man."

I took that to heart and came to understand that there is no rushing through the pain. With time (there is no limit) I came to understand and appreciate the precious gift my husband was in my life.  With his passing everything changed and it continues to do so.   Looking back I realized that we lived in an ever changing world, but it was a world we mastered “together.”   And, that to me is the absolute greatest loss. 

I have come to understand that the distinct role I played in my husband’s battle with this illness now has also been taken away has left me with a significant slot of time needing to be filled again.  And, therein lays the challenge for us.  It is not that we don’t know how to stay busy rather the question is as to what in life will fill the void left in our hearts and souls. 

I don’t have the magic answer, dear Margaret.  All I know is that in this case time is on our site.  Although the biggest hole in my heart is still void of his presence the little holes that slowly have filled again.  And, for that I am grateful.

In 2007 I had written this posting. 

Dear Macks,

My heart goes out to you, and I so very much understand your pain.  I too have lost my husband, the love of my life.  He passed away February 7, 2007. 

During the last seven months I have experienced different stages of grieving, the disbelief, the yearning, the anger, the depression, until now, finding myself teetering with the acceptance of the reality that he simply will not return.

My yearning for him has not diminished in fact; it has become my constant companion. 

I never knew how to live just …one day at a time ….  This is a new concept,  but much to my surprise, I am doing it. 

I have survived the “first time” of many comings and goings without him although, I still shun certain predictable situations, if possible.

“I don’t know how to live, knowing that you will die”, I remember saying to him once, but here I am 18 months later.

I draw a “blank” envisioning  my life in the future  so I take baby steps….one day at a time although, I have already moved in to the future without him. 

“But Mom, you have us” my oldest son tried to comfort me.  “There is a void no one can fill, the same void I would have, had I lost you” I answered, and that he understood.   

I learned the art of “not thinking about it” so not to despair with the overwhelming pain.

I allowed myself to go on, one step at a time, without having the need to explain my direction while accepting the path I am on.

.  I encountered plenty of these “knee buckling, heart wrenching moments” until it “buckled” no more, reducing to twitches in my heart, filling up ever so slowly with memories of joy and gratefulness for the years shared together, giving me the strengths to move forward, one step at a time.

May your heart begin to heal, one day at a time. 

Hugs and love,
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 to hear that you have been unwell - Marion's post about taking one day at a time is sooo right. 

Take care of yourself.

Gerry

Re: My Husband and Cholangiocarcinoma - Part 2

Dearest Marion, thanks for reposting your posts! They were beautiful and so, so true!

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

Marion,
Everything you said is so true.  Thanks for including that old post.  It is beautiful and expresses what so many of us on this journey are feeling.

Margaret,
It sounds like you have the blood clot situation under control.  I have to agree, the nights are still the hardest and more so at this time of year when they are so long.   Just take it as it comes.  One day at a time.  Thinking of you.
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,

Well, that is a very inconvenient blood clot, it must have been hard to go to a hospital after spending so much time there these past years. The shots don't sound too fun either but they will mend you.

Marion,

A truly lovely reposting, that is the first chapter of the book you are going to write, it is pure poetry.

Patty

Re: My Husband and Cholangiocarcinoma - Part 2

Lainy:  I too have colitis, not ulcerative though.  When I was first diagnosed they put me on Asacol.  My mom had ulcerative colitis.  I took Asacol 3 times a day 2 at a time for about 6 months.  Then gradually the doc's weaned me off of it until I was on a 'as needed ' basis.

I'm very surprised that I did not more 'flare ups' dealing with all of the issues with Tom during the past 4 years.  About three months ago, I had a flare up and started taking Asacol, and it got WORSE.  I was dropping weight like to the tune of 15 pounds in 5 days.  Then it got better for a week and then it started all over again and I lost 10 pounds.  When it flared up a week later, I got an appt. set up for a colonoscopy.  (Now remember I was taking the Asacol during all this time, hoping it would help!)

After the colonoscopy, the doc says everything looks excellent...I told hi I was on Asacol and one of the side effects of Asacol after long term use is that the symptoms get worse!  He told me to NOT take Asacol anymore because it was not helping, it was making me sicker.  He told me to take immoudiam AD or generiac anti-diarrheal relief medication and it works wonders!

With all the stress I've been under, I just take 2 pillsto start and then maybe one more nd I'm good or he day.  Besides the over the counter meds  is a LOT cheaper and works better.

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret. Had a Gastro visit today and I am 75% better!  Still on steroids (getting migraines from them)until about Christmas time. Oh joy! He also put me on a big dosage of Probiotics to help heal and a Mesecline (sp)? He said it is unusual for someone my age to get it and probably will not get it again. Also said not caused by stress but after the seige begins stress plays a part. I hate to talk potty talk but OMG I can now go to the Store with no stops!!! I have virtually been house bound for months.  Life is beginning again and I have a new found sympathy when I hear someone has colitis! Hope you are doing ok. Time helps and your normal is still way too new. You will know what to do and please believe me when I say, you too will be
ok.  OK is good for a while.

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

I just came across this posting and am grateful for reading it. First, Margaret and Lainey I hope you are feeling better. I'm sorry you both are going through so much. Secondly, thank-you Marion for reposting your beautiful comments. I remember the Macks and their extreme grief and it terrified me to think I would be going through that one day myself. I've made it through what was once unimaginable and now I feel like everyone did or does early on, just numb.I believe I even said the same thing to Tom. That I didn't know how to function knowing he would be gone. He just said that I had to, there wasn't any choice. I look at Tom's picture and think of our life together and wonder how in the world I'm going to live maybe 20 - 25? years without him in my life. I actually wish I was 20 years older so it wouldn't be so long until I would see him again. When he was first diagnosed I told my mother I didn't want to be a widow at 48! I still don't want to be at 54 but I am and I have to deal with all of these firsts as Marion said. Just an hour or so before he passed my boys had gone outside to get some air. He had been nonresponsive for several hours but I hugged him and cried that I would miss him forever and that my heart was breaking. He actually tried to respond. I know he heard me, but then I told him that he needed to let go and be in peace. That we would be alright. That we loved him and wanted him to not suffer anymore. My boys came back in and a few minutes later he let go. I hope he is having a big party and looking over all of us. I hope I will be with him again. That is the only thing really keeping me sane right now. Love to all, Mary

341 (edited by marions Wed, 14 Dec 2011 13:04:56)

Re: My Husband and Cholangiocarcinoma - Part 2

Mary….I wish for a fast-forward button to help you bypass the incredible, painful, time it takes to move through this stage of grieving.  It is said that tears which contain leucine-enkephalin (a brain’s natural pain reliever) are our emotional first-aid.   Try not to hold back - let it out - the pain has to go somewhere – anywhere, but inward. 

Talking helps Mary, may it be with your best friend, a person you trust, someone who can relate due to his/her own experience, our discussion board, a grief counselor, our Dr. Giles or anyone else you know has the understanding and compassion to hear you out.

Take baby steps, one hour, one day at a time.  Don’t rush through this - you are mourning the loss of an incredible man.  And, know that love and time will help you through this.
Hugs and love,
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

Dearest Mary, I hate to say this but you are sooooo normal! Very often I say to myself, I am another day closer to seeing Teddy! I have no death wish, I am doing fine, but can't wait to see him again! I am way ahead of you though at 71.
YES, Tom heard everything you said just as Teddy did me, and they knew we were holding them as they passed. At the risk of being bood off here I am going to repeat a story for you:
The actual passage took hours and Teddy laid there with his eyes wide open, never blinked or moved. Late afternoon I leaned over and told him to go to his Peace and that I would be OK. He actually put up a hand as if to say stop. He was not ready!
About 8PM I said it again. He actually put his fingers in his ears!!!! He was not ready.
At 900PM Robin called the 2 Grandsons at home, they are 15 & 17. She told them Papa mentioned their names and that he was Passing but they did not have to come to Hospice. 15 minutes later there they were! Robin said, "Papa, Brandon and Kyle are here". 3 minutes later he passed. I felt he didn't want Robin and I to be alone and she felt he was teaching the kids one last lesson, that dying is ok.
Again, to hurt and to miss someone so deeply is because we loved that deep. Like Marion says, don't rush, let time and nature and life take it's course. Thinking of you lots!

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

Thanks Marion and Lainey. I love that story Lainey. The other day my brother-in-law's girlfriend told me she had a dream about Tom. She said me and the kids were raking our yard and cleaning it all up in order to spread his ashes. She was there and she looked up and saw Tom. She said, "hey Tom, what's heaven like?" He said " its wonderful!!" He ALWAYS said "I'm wonderful" whenever anyone asked. She said she just heard his voice saying it like he always did. Of course I broke up but I was glad to hear it and hope it's true. I hope I have dreams like that. So far I really haven't. I've had dreams about him but we're usually young and doing wierd things. Not realistic like that. I'll be okay. I just got some mail from hospice telling about their support groups and social activities. I'll probably check some of them out. I dread Feb. because I'm having my right knee replaced and I'll be stuck at home for weeks before I can drive. Right now I just get in the car and go somewhere if I get depressed. I'm not much of a shopper but I'm actually enjoying that right now. I went to the dollar store yesterday and found all kinds of cool things I didn't have and needed! HA! I just have to stick to the dollar stores. I also bought some wallpaper for my dining room but my kids unanimously hated it so I'm taking it back today. Have a great weekend everyone. I appreciate all of your love and support. Mary

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Mary,

I just wanted to let you know that I was thinking about you. Thanks for the update. You seem to be doing ok. I'm sure it is so hard for you at times, though. I hope you have nice dreams about Tom. I also hope he "visits" you soon. Take care, Mary. God bless you


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

OMGOSH, Mary! Here comes another Teddy story. Your story reminded me. It was about a month after he passed. I was sound asleep and had a dream that I was snuggled in his arm right next to where I was laying in bed.He looked wonderful and we did not talk. I just lay there. Then I looked up at his face and I asked what it was like in Heaven and he said  "It is just beautiful". I slept right through whereas I normally wake up from dreams. It was awesome.
Here is how I see your recuperation from Kneasles! It will give you time to catch up with yourself and to what I hope will be many visits from Tom.
Love the Dollar Store. Today I am taking myself to see the Decendents with George Clooney. It's supposed to be excellent and let's face it who doesn't want to see George? Take care and be sure to let us know how your surgery turns out.

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

Wondering why this tread now shows as "Moved" and where it was moved to?  I'm glad that I could still click into it and read it....but can anyone answer?  I would still think that this post has a lot of info in it that may help others.

Rick? Lainy? Gavin? Can you infom me?

Thanks,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Sorry, Margaret, I am so computer illiterate!

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

I don't know exactly how to begin because our beginning is just starting with this devastating diagnosis of CC. My husband was diagnosed on Jan 2012. Started as Bile Duct Cacinoma; Exploratory Laperotomy with Bile Duct resection and whatever necessary on Feb.29, 2012... Our world shattered and changed! Unable to resect ANYTHING! Vascular Encased CC Metastases. Gallbladder was removed ansd let some healing begin. We are scheduled to see Oncologist on March 30, 2012. He was given"about a year." Those words still wake me up at night. His wt. went from242lbs to 211lbs. PLEASE any advise or comfort would be welcomed at this point. I've not reas much info on here concerning non-resectable CC. Most Treatment Facilities state, MUST BE RESECTABLE. We have a GREAT Heptaologist/Liver Transplant Surgeon. Just need HOPE. Sorry for the long post; You know how new-comers are.Thank You and look foward to being a member of the family. God Bless You ALL. Terry& Wayne

Re: My Husband and Cholangiocarcinoma - Part 2

Susie....know that you are not alone.  Know that we understand - know that we can relate - know that you are amongst a group of people with similar situations and, know that you now are part of a fighting team.  That in will give you some comfort.  Life expectancy is a guess only, Susie.  Yes, we know the severity of the situation, but we also have learned to understand for predictions to be well "unpredictable."   And, let's not focus on that.  Let's put the energy in to finding answers.  Have you sought out another, professional, opinion?  Where are you located?  Hang in there, Suzie.  We are in this together.  Others will be around real soon.
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

Susie,

My daughter, Lauren, just turned 26 and has CC. She has one tumor that started out 17x14 and it has shrunk 4 cm. each way with chemo. She was diagnosed Aug. 29, 2011. She was told she was unresectable because she has other small tumors in the left side of her liver and her large tumor encases all major arteries and vessels. Well her tumor is now in a way that her surgeon feels if we can get the small ones to die , that he can operate!! So she now has appointments for radiation therapy with Y90. If this works, then hopefully a resection. She was totally unresectable at first and others on here have been told that too only to later become resectable. I don't know what the future holds but I do know one thing. We never give up hope. No matter how bad it looks, things can turn around and miracles do occur. Please find a fighting spirit. It's really the only thing you have. I will pray for you and your husband. Just remember to never give up.

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.