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.
Hi Michele, I am so glad to hear the ABHR cream worked. As I had said before, it worked wonders for my husband.
They gave my husband ABHR cream. It is a compounded cream made of Ativan, Benadryl, Haloperidol & Reglan. It works really well on nausea and vomiting. You rub it on your wrists. It works on the different brain receptors to help with nausea. It is very common with oncologists and hospice. It was a god send for us. Ask the hospice nurse. Best to you and your husband.
I have a memorial stone in my garden in memory of my father which reads:
If tears could build a stairway
And memories a lane,
I'd walk right up to Heaven
And bring you home again
I have always loved this saying. Now that my husband is battling CC, all of the hospice nurses that come to visit, stop and admire the stone. It is a beautiful saying.
Happy Birthday to your mother. She was born the same year as my husband. Much too young to have to say goodbye.
I agree with Lainy and Holly and I truly appreciate your posts Percy. I have learned so much from you about this cancer. God bless you Percy and keep sharing the knowledge.
Re: I need advice on decision to do chemo. Pls. Help (26 replies, posted in General Discussion)
Hi. My name is Shelley (aka Shellina). My husband Al was diagnosed a couple of days before Christmas 2012. He made the decision for quality over quantity. At the time they thought he would live 3 to 6 months. Over 10 months later, he is still with me. His biggest problem has been high ammonia levels and confusion. This has now been controlled by Lactulose. However, he also had done a lot of damage to his liver years ago. So, his liver was already damaged before his diagnosis. He also has a stent and an external drain. He still gets around quite well. But, he does get tired easily. I cannot give you advise since it is such a personal decision. I just wanted you to know of someone who chose no chemo and has never regretted that decision. Follow your heart. There are no wrong decisions.
You may want to ask about a compounded cream called ABHR. I rub it on my husbands inner wrists. One of the components is Reglan which is for vomiting and nausea. They give the cream when the patient has a tough time swallowing or keeping meds down. The other ingredients are Ativan, Benadryl and Haldol. It is recommended by many oncologists. I find it to be miraculous.
It has been a really rough day. Actually, it has been a really rough couple of weeks. When I try to talk to the hospice nurses about his confusion, they come over, spend 10 minutes with him and don't think he is confused. I came home the other day and he had totally rearranged everything in the refrigerator. Now all of the jars are in the cheese and lunchmeat drawer. He also placed bottles of pink beverages on a table in the dining room. He was decorating the house with refrigerator items. He can't remember when he last took his meds. He thinks I am trying to keep them from him. I have to keep them locked up. The other day he broke into the small safe I had them in. Thankfully, he didn't take too many extra pills. One morning I woke up and he was asleep in his hospital bed with a box cutter in his hands. He wasn't intending to hurt himself. He had been trying to sharpen a pencil. But, because of his confusion and agitation, it really scared me. I try to hide sharp objects now. He also has a biliary drain bag and he messes around with it. Today he broke a part of it. He'll stand in the bathroom and fool with it and bile drips all over. I am constantly cleaning up after him.
I am sorry to go on and on. I just feel like maybe you guys understand what I am going through. It is such a roller coaster. Don't get me wrong, we have some good days. But lately they have been very stressful. Unfortunately, I have no one to help me. Al's teenage daughter has only seen her dad twice since his diagnosis last December.
Anyhow, I probably have said too much. It just feels good to talk to someone.