My Husband and Cholangiocarcinoma – Part 2
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Dear Terry/Susie60, Welcome to our extraordinary family but sorry you had to find us. We all relate to what you are going through but with that said, now you start your fight. I feel that when when we hit a brick wall we must get a second opinion. With CC there are always surprises but we try to stay realistically optimistic. We have many stories full of HOPE! Another opinion, no matter how secure you feel with your present ONC, can’t hurt. No Doctor will be upset if you choose to do that. No one can give a time line on this crazy Cancer and we were not born with expiration dates. We do not listen to date frames, we prefer to make our own! May I ask where your husband is being treated. You have come to the right place, we are all in this together and you are not alone, we are here to help. Looking forward to hearing more from you.
Susie,
My daughter, Lauren, just turned 26 and has CC. She has one tumor that started out 17×14 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
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,
MarionI 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
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,
MargaretOMGOSH, 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.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
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
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!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,
MarionI 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
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.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,
MargaretMargaret,
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
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