John Prine? Now that's good music! I like your attitude and I like your taste in music. :-)
Kris, I would also like to send my heartfelt condolences. Mark was such a fighter and it truly seemed as though he had nine lives. GOD must have needed another angel. I'll be down here in So Cal raising a nice glass of milk stout in Mark's honor next weekend. My thoughts and prayers are with you during this difficult time.
I get signs through music. When I miss Al the most, or I am upset about something, one of Al's songs will come on the radio and remind me that everything is alright. It's amazing. :-)
I am having my gallbladder removed today. Apparently, I have a gallbladder filled with stones. It all brings back so many memories. However, before I was the supportive spouse. Now I am the patient. The funny thing is that the surgeon was trying to describe the biliary system to me. I had to stop him and tell him that unfortunately I know more about bile ducts, the liver and the gallbladder than anyone should know without an MD after their name. This weekend would have been Al's 59th birthday. It's also the first birthday since he passed last May. Since I will be at home recovering from my surgery, I plan to honor his memory just me and my pups. Maybe have a cupcake! Well, wish me luck with my surgery. :-)
What???? This So Cal girl says "Go Buckeyes!"
Nancy, I also lost my husband seven months ago. The holidays were really hard. Harder than I imagined they would be. I know it will get easier. This year I made sure to hang a beautiful ornament on my tree with a picture of Al. We also had a tradition of eating lobster tail and king crab legs every New Years Day. Well you know what, I went to the store today and got myself a lobster tail and a couple of legs and I loved it. I talked to him while I was eating. :-) I hope we all find peace and comfort in this new year. I wish peace and comfort to all who are fighting this disease. Peace and comfort to all of the caregivers. Peace and comfort to all of us who have lost our loved ones. We have to keep fighting the good fight and make sure everybody knows about cholangiocarcinoma. It's the only way we will one day find a cure.
Duke, my sister lives in MN. When I visit I love to go walking near the Minnehaha Falls. Red Wing, MN is also a great little town to visit (oh, and Stillwater is nice too). If you have never been to the Mall of America, it is quite a sight to see. MN is a beautiful state. Best of luck at the Mayo and enjoy your stay in the Land of Lakes.
Today would have been our anniversary. Wait, I guess I should say, it is our anniversary. I still miss him so much. However, I am so grateful he is no longer suffering. I still read this forum everyday. I feel so bad to see so many new people diagnosed. Especially the young. I pray everyday for a cure for this awful cancer. God bless you all.
Alfred Roy Emeterio
2-21-56 to 5-30-14
Al was diagnosed 12-23-12. He chose not to have treatment after seeing his father struggle with chemo during his battle with pancreatic cancer. He was told his life expectancy was approximately 6 months. One doctor even told him he would likely die of an infection before cancer would take his life. From the beginning he told me he would live 18 months. I doubted it. He told his best friend last year that he would live to attend his wedding on May 4, 2014. Again, I doubted it. As some of you know, we did have some issues. The worst issue was his ammonia level. Once we got that under control, he did very well. He attended the wedding early last month and declined right after. On Tuesday he was semi-comatose. No food, no water, no speaking. He continued to fight until Friday when the Lord took another angel.
Duke, I always LOVE to read your posts. They are always so upbeat and funny. Might be that you're from the buckeye state. My lovely father was a buckeye from Marion, OH. He had the same attitude as you. Keep smiling and keep making others smile. It's what we all need.
My husband has been on hospice for over 14 months. You cannot assume it will be a year or six months. But, I will tell you they are a Godsend. I have thought many times it was getting close. He keeps hanging on. Our hospice nurse tells us everybody is different and be thankful for every day.
My husband is not doing treatment (no chemo, surgery, etc). He is not diabetic. However, his blood sugar is very low now. The last time he was hospitalized his glucose was down as low as 40. The doctors told us glucose levels are usually low in CC patients because of the metabolism issues CC patients face.
Meant to say he is progressing
My husband started with intense itching. His quack of a doctor told him to drink more water and prescribed a lotion which was $75.00 and not covered by insurance. I sent him back to his doctor and told him to tell the doctor to do blood work. The labs came back and the alkaline phosphatase was through the roof. We spent a couple of months going for various diagnostic tests (CT scan, ultrasound, etc). Finally they thought it was a stone and he needed gall bladder surgery. When we met with the surgeon he told us he couldn't help and that he needed to see a GI for an ERCP. Before we got into see the GI, he ended up in ER with jaundice, pain and confusion. He spent 2 weeks in 2 different hospitals. He almost died. He doesn't remember much of those 2 weeks. They put in a stent and he has an external biliary drain. I would say the drain saved his life. They tried to do brush biopsies but none came back positive. The oncologist told us this is common and he has all of the symptoms of cholangiocarcinoma. We had a few more trips to the ER due to pain. He was not a surgical candidate. He watched his dad die from pancreatic cancer and chose to not do any treatment. He has been at home followed by hospice for 14 months now. He has good days and bad days. But, because of hospice, he really doesn't have pain. He is now progreesing and has some fluid in his lungs and not much of an appetite. But, I don't think he regrets his decision to chose no treatment. They told him in late 2012 that he probably had 3-6 months. To date, he has lasted 17 months since diagnosis.
Congrats! It is so nice to hear from you again and what wonderful news.
Julie, my husband has issues with tape also. As Kris mentioned, ask for Sure Prep. It really helps. In addition, we only use MicroPore tape. Ever since we made these changes, we have no more skin breakdown. For those who have external biliary drains, Sure Prep also helps protect the skin around the tube where bile can came out and irritate the skin.
My husband has intrahepatic cholangiocarcinoma. He has a stent with an external biliary drain bag. They did brushing 2 or 3 times and never got a positive biopsy. We had a hard time understanding this. The oncologist told us this was common. They told us they could make a positive diagnosis without continuing doing brushings. It has been over a year. He does in fact have ICC. The diagnosis is made based on other tests and symptoms.
I agree with everybody else, we miss hearing from you. Please don't shy away from hospice. My husband has been on hospice. Believe it or not, he has been on hospice for a year. They have been a GOD send! We have met some lovely nurses and never have we felt that we lost our freedom. I have been able to keep working. We have a choice as to how often they come and what services we need. Please keep it in mind.
I think of you often and wish you the best.
Shelley (aka Shellina)
I just wanted to add "God bless you for being a hospice volunteer". My husband is in hospice and we are ever so thankful and grateful for all you do. I am very sorry to hear about Gail.
Has anybody ever seen an external drain bag fill with air? My husbands drain is still putting out bile into his bag. However, the past day or two air is also getting into it and it fills up like a balloon. When I researched this, I found something called pnuemobilia which appears to be air in the biliary tree. Anybody else ever see this?
My husband has external drain too. I agree with what has been said by Lisa & Betsy. But, I wanted to add that the sure prep pads are miraculous! I also highly recommend Micropore tape. My husband suffered with his skin breaking down for about 9 months due to the bile and tape. Both can really do a number on your skin. All it took was one caring hospice nurse to see how bad it looked and she made sure he had the sure prep pads. Unfortunately our hospice pharmacy doesn't have the Micropore tape, so I have to buy it. But, it is well worth it. No skin problems ever since.
Re: Surgery or no surgery - what to do? (9 replies, posted in Surgery, Resection & Transplant Treatment Options)
When I was reading your post, the first thing that came to my mind was Lauren. I thought it sounded like her surgery. I agree with Pam that another opinion would probably just confuse you and your mum. I also agree that you may have to go with your gut. My thoughts and prayers are with you both.
Hi Danielle. My name is Shelley. When I read your post, I just had to write to you. I am so impressed by your maturity at 19. Your father has had a rough couple of months. But what an incredible ambassador he has in you! Don't let anything the doctor says bring you down. Use it to keep fighting for him. My husband has CC too. He's a little older than your dad. The doctor's had a tough time diagnosing him too. It's a hard one to figure out. I can't help you with advice as to where he should treat because I am on the other coast. But, I want you to stay strong for your dad. As you'll see on this site, there are many people who do very well.
Beautiful poem. Also, I encourage everyone to read the book. It is a wonderful book.