betsy
Forum Replies Created
-
Posts
-
Sue,
Congratulations on your wonderful news! I’m am truly happy for you and your family.Best wishes,
BetsyHi Marion,
My fever has broken and I am feeling much better. The doctor capped my drainage bag before I came home and I’m hoping it stays off until I go back in a couple of weeks. I can deal with the tube but the tube and bag really brings me down.How are you?
Betsy
I think its similar to angioplasty (sp?) for heart patients. A ballon will be inserted into the bile duct and then expanded – the ballon has tiny blades on it that will cut through the scar tissue. Hopefully this will be a permanent fix to the problem.
Betsy
Hi dads daughter,
I can give first hand information regarding Dr. Pelley of the CCF. I was sent to him by my surgeon, Dr. John Fung. Dr. Fung feels he is one of the best for colangiocarcinoma. He did not recommend chemo treatments because Dr. Fung was able to remove the entire tumor. Be prepared, he has a very dry sense of humor. I also had to wait almost 2 hours to see him. Overall, I love the CCF and have had excellent care there.Betsy
Hi Suzannegm,
No, I haven’t received any chemo treatments. The tumor was completely removed (with a 1″ clear margin) and had not spread to lymph nodes or other organs. My surgeon sent me for a consult with an oncologist regarding prophylactic chemo but the oncologist advised against it. So, I just hope and pray that my good health continues. I will continue with monthly labs and frequent CAT scans.
Betsy
Thanks everyone for your generous and kind support. It means so much to me coming from people who have experienced this cancer first-hand.
Betsy
Hi Cody,
I’m glad to hear from you…I was just thinking of you today and wondering how you are? Re. ascites – here is what is happening for me – maybe it will help you. I had a sample of the fluid removed and checked for cancer, infection, bile…everything is clear so they are puzzled as to what is causing the fluid build-up. They biopsied my liver as well and everything is clear. I am taking Lasix (a diuretic) every day and it has made a HUGE difference for me. I am much more comfortable and I can enjoy my meals again. Walking after meals didn’t really help me much. I lived on cereal for a while because I could eat a bowl full of it and not be miserable. Let me know what your doctor says. I don’t think you need to suffer with a big belly.To my knowledge, there are no Graeter Ice Cream shops in the Cleveland area. We have Stone Cold Creamery, Mitchell’s (made here in Cleveland) and Ben and Jerry’s….all the usual chain stores.
The weather here is changing too although I know we don’t get the same amount of rain as Portland. I really despise the time change – its dark at 5:30pm. Makes me want to hide indoors for the next 8 weeks.
Hope you are more comfortable soon.
BetsyHi friends4ever,
I was diagnosed with intrahepatic CC in Dec. 08 and had a liver resection in Jan. 09. Since my tumor was located inside the bile duct in my liver, my entire right lobe and part of my left lobe were removed. The surgeon also performed a Roux-en-Y which involved cutting and re-routing my intestines. I had no cancer in my lymph nodes or other organs. Given my age (48), overall good health and location of the tumor, I was a good candidate for a liver resection. I had an absess form in my abdomen and a tear in my bile duct which kept me in the hospital for 21 days. I can go on and on with details but don’t want to bog you down with too much information. 10 months after my surgery, I’m hanging in there and overall feeling pretty good. CC is a terrible disease but there are treatment options which can give you reason to be hopeful. The liver is the only organ that can regenerate itself and you only need a small portion of healthy liver for it to do that. My surgery was performed by Dr. John Fung of the Cleveland Clinic. If you are near Ohio, he is an amazing surgeon and one I would certainly consult.
Since I have been a patient and not a care-giver, I can only tell you my feelings about having this cancer. Its been an emotional tornado that has totally turned my life upside down and right-side up. I never mind being asked how things are going for me and am eager to discuss my health and this disease but worry that I sometimes suck all of the air of out a room. Some people really don’t want to know all of the details, they just want to hear everything will be fine and I’ll never be sick again.
You are a wonderful, brave friend. Your friend is fortunate to have you as an advocate. The results from you friend’s chemo are very encouraging. I sending you prayers and hugs from Cleveland.
Betsy
I had my liver resection at the Cleveland Clinic January 2009. My surgeon was Dr. John Fung. He is an amazing surgeon, head of liver transplants and Department Chair of General Surgery. You can google him if you need more information. If you want to give the Clinic one more try, I highly recommend him. I am sorry to hear about your step-father. If I can help in any way, please let me know. I live in the Cleveland area and am pretty familiar with the Clinic.
Betsy
Hi Sue,
I was wondering if you had any ascites after your resection? I had some fluid drained on Tuesday and sent to the lab. My doctor said he doesn’t think there is any cancer, but thinks there may be a bile duct leak. His other theory has to do with “too much flow” for my liver to handle. Ever heard of that? If I understood him correctly, the liver has two arteries flowing into the liver and one flowing out. If my liver isnt funtioning quite right, there is a back-up of fluid which filters out into my abdomen.
Hope you are doing well.
Betsy
Hi Kris,
I’m not going through what you are and I can’t even imagine how difficult this is for you but I do know how hard it is to feel emotionally tough or positive when I am in pain. I hope the doctors can give you something to make you more comfortable without making you feel less like you. I want you to go buy yourself that new winter coat or anything else that makes you feel better even if its for a brief moment.Hugs and kisses from Cleveland, Ohio,
betsyHi Cody,
I live east of Cleveland in Ohio. Its my friend who lives in Portland. He is an avid cyclist and writes for a local cycling magazine. I saw Voodoo Donuts on the Food Channel. Are you nearby? The donuts looked amazing! Although the bacon one looks a little too gross for me.
As for Netflixs, I joined for a while after my surgery and loved it! I LOVE movies, especially dramas, and would be happy to share my favorites with you. Watching them on the computer is instant gratification. Go for it! Especially with the colder temps right around the corner.
Are you getting chemo/radiation right now? I’m so sorry to hear your cancer returned. It just makes me so sad and angry, all at the same time. Can you resume with your physical therapist?
I was at the hospital today for a consult with interventional radiology. It turns out my protruding belly is full of fluid. I’ve been complaining to my surgeon about my belly since the end of Spring but I was told it was due to the surgery and it would eventually go down. But I knew something wasn’t right but just kept thinking, well, it will go down. But it didn’t, it kept getting bigger. I mean I can hardly reach over to tie my shoes! This doctor today is the first one to take the time to sit down and actually look at my scans.
So, next week, I’ll undergo some more tests and they will drain as much fluid as they can to make me more comfortable. He thinks one of my bile ducts is leaking but doesn’t see signs of cancer. He also put me on Lasix which has already given me some relief. I try to be my own advocate and ask the right questions but sometimes its so hard to get the answers. I am constantly second-guessing myself but as time goes by I’m going to work on doing less of that.I love Patagonia!
Write back soon,
BetsyHi Cody,
Thanks for your reply. How long ago was your resection? I had a stent for several months after my sugery but don’t have one right now.
I agree with everything you said about trying to look like “your old self.” I would add to that feeling like my old self as well. I barely recognize myself anymore because of all of the changes I’ve gone through. I also try to wear make-up every day and find clothes to wear that accentuate the positive. I’ve always been pretty fit and thin and concerned (maybe too much) with my looks. I’ve had to change hair styles as well because so much of mine fell out. I’ve taken to wearing skirts this summer but won’t do pantyhose. I can’t stand anything that goes over my stomach because its so uncomfortable. The yoga pants are great as well.
I’ve been trying to do some light ab exercises but mostly I walk. I just can’t find the motivation to do any other kind of a work-out.
One of my very best friends lives in the Portland area. He sends me pictures and I must say it looks like a beautiful state. How do you like living there?
Well, its time to watch re-runs of “The Office.” Are you a fan?
Betsy
Hi Mary,
I live east of Cleveland in the Chagrin Falls area. How are the pumpkins? Do you have a large patch? NO snow as of yet but its pretty cold and cloudy. I am getting ready to head out into the elements. I am a pet sitter/dog walker.
That’s a good point you make about the doctors appreciating the fact you are educated about treatments and the disease. I think mine was pleasantly surprised that I had taken the time out to do some of my own research. I just get so weary of the whole process. I guess if cancer is going to get me, its going to get me but I will try to dodge the bullet as long as I can.
Hi Kris,
I will read those links you provided. I’ve never been to PubMed website. How are you feeling today? What’s the weather like where you are?
Betsy
