1

(2 replies, posted in Members' Cafe)

Kris, tell Mark it is better to be lucky than good.

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(10 replies, posted in General Discussion)

Well Duke, my analogy is distract yourself by doing what you love, or try something new, just for a while don't look ahead. Mental survival is as critical as physical survival . Faith is facing the unknown and not being overcome with fear. Have faith Julie, it might be a long ride, Pat

3

(10 replies, posted in General Discussion)

Julie, you are at a difficult time in the first year, it is hard to distract yourself from this topic. Our lives are like a canoe ride on a very winding river. We know there is a waterfall somewhere ahead, but we don't know just how far. Don't be so worried about the waterfall that you miss all the beautiful things along the shoreline . Think about what you love to do, make a plan and do it... hope for the best, Pat

Hi  Julie , I too get times I am cold , I take a hot bath and dress warmly, there have been days when I take 3 or 4 baths through the day, I think it is when the weather changes. It takes my body longer to adapt to seasonal change. Hope you stay warm, Pat

5

(14 replies, posted in General Discussion)

Well Cathy hang in there. Time passes  quickly ...pursue your dreams, help others, and you will be at 9 before you know it. My Oncologist always said cancer is the most baffling corridor of medicine one could practice. Cancers of all types can suddenly turn around, and all at once the bodies defenses recognize the cancer as an invader and suddenly it is gone .Never lose hope, it is our most powerful ally, My best wishes to you...Pat

6

(14 replies, posted in General Discussion)

Yes Lainy, I did check that out... His quotes are motivational, which basically is the same. Coach is making these statements to motivate young men to work hard . It  is way too easy to just sit around and be unmotivated. My dogs make me move every day, we help each other. They hate rainy days, and so do I . Keep moving, Pat

7

(14 replies, posted in General Discussion)

Years ago, a man I knew was going to retire. when asked what he planned to do, he said " I'm not going to sit on the porch and wait to die, that's for sure."  I thought of him often after he left our outfit and he would drop in occasionally and it is easy to apply this attitude to cancer survival as well. This is what I base my outlook on. thank you all again, Pat

8

(6 replies, posted in Members' Cafe)

Retirement is a wonderful thing, however it comes. Try this for a stress free day... ride a bicycle to a park on a beautiful day. Leave all your worldly cares behind, your cellphone, your watch, Just go and mess around doing nothing like you did when you were 15 , and your only deadline is to be home at dinnertime. Slow down enough to go back to that time, that frame of mind and smell the smells and hear the sound you havent heard in years because your head is too full of things. It's wonderful, Pat

Well there you are, Julie, you are a true survivor ! I commend you for showing an employee of a professional position how to do their job properly . You know how to be your own advocate, speak up now, you might not get another chance. Continue to take care of yourself, Pat

Serena, we all have tremendous resolve in our fight of this disease and I believe in anything that can help your fight. A few of the women I sponsored with cc had chemo.One had a chemo port which became infected. They said the infection went right to her liver, weakened already by the disease , surgery and chemo. Cindy voted on Tuesday and died on Thursday, it happened so fast I could not believe she was gone. My message is this to all chemo patients with a port, be ever so careful, watch every nurse, how your tubing is handled, your life depends on hospital cleanliness, 24/7. Pat

Serena, Hello, my name is Pat and I am a resection patient with 0 lymph involvement and I chose to forgo chemo treatments, my onc. suggested I do not get chemotherapy. He said he would let me have it if I felt it would help psycologically ...?  Well I certainly didnt want chemo to suppress my fears, thats for sure. I chose to not have it and I am happy I didn't.... Pat

12

(14 replies, posted in General Discussion)

And also Julie.... Live your life NOW not tomorrow, our future is uncertain, mine, yours, the 93 year old woman I help often, we live a life with no real long term plan. After my surgery when I was where you are Julie I went on what I felt was the vacation of a lifetime, I  wanted to see a south pacific island type paradise so I went to Bora Bora  with my ex wife ,  and had a wonderful time. I did many things I realized I had not done, experiences I had not lived, and I can honestly say I lived the best years of my life in the last 9 . Make short term plans for now. As you feel well enough , take that trip, get that puppy, live your life now.   Do it, ( voice of experience ) Pat

13

(14 replies, posted in General Discussion)

Oh iowa girl, I have asked for a thousand tomorrows one at a time. When those were all gone, I asked for a thousand more, one at a time. I'm currently working on my third thousand. Hey, this system works.... Pat

14

(14 replies, posted in General Discussion)

Lainy, yes I did see your response which was positive and energetic as most your replies are, thank you as always.Gavin you too are always upbeat and positive, thank you as well. So many things have changed and evolved in my life since 05', time has passed swiftly. I began sponsoring others with cc at about 5 years out , through different support groups in my area. All were women, all were resection patients, 4 different hopeful people who I cheered on and gave them my best support and hopeful  encouragement and did not have any of my people do well. I am not sure why god has given me so much and I want so much to have someone I support on this personal level do well with me.It has proven one of the toughest things I have faced in 9 years of my new life. I hope to have success in this area this year. Thank you all again, Pat

15

(14 replies, posted in General Discussion)

Sometime in the middle of September I passed my ninth anniversary of the discovery of a soft tissue tumor in my bile duct. I posted in the good news section as well, but part of me wants to find a summit and just scream it to the world. I believe in quiet celebration, however I also want you all to know that sometimes it goes well. I joined the sites registry and I hope to contribute however I can to this org. You have helped me get where I am today. Thanks to all the dedicated moderators and the patients who have shared their stories good and bad, Pat

Hello everyone, I have passed a wonderful milestone in september...nine years passed diagnosis, nine years since I first heard the word "cholangiocarcinoma",  a name that changed my life. All the doctors initially assured me it is very unlikely to be this, it is very rare, ...a fraction of one percent, don't worry. It would have hurt more than helped to worry. I just wanted tests and treatments as fast as they could come. The heck with second opinions, By the time I was on the table, I know at least five doctors looked at the medical tests and time is a major factor. My surgeon was referred to as the best by my gastrointestinal doctor. I chose to put my life in his hands. In my case it payed off. Being told you need half your liver removed is mildly upsetting news, but I felt O.K. lets get this over with. Once again it seemed to work out . My blessings have come ever since. Today I will be fishing with my adult son and enjoying another beautiful fall day. Thank you for helping so many people, Pat

17

(18 replies, posted in General Discussion)

Nancy, I do not have a stent currently, In previous posts I noticed certain foods and alcohol make my resected liver produce what I call a "burst of bile" where I can see evidence of over production of bile, I believe a steady flow of bile keeps the duct clear. It is when I eat nothing but salad and tuna fish and fruit etc. that trouble starts. A careful presence of alcohol and animal fat seems to keep my bile duct clear til now. This is my observation up to this point. Everyone is different and we are all just chemical robots as my high school earth science teacher once said. The trick is listen to your body, you must learn to read the messages your body sends you. It seems contrary to logic I know, I do eat healthy,most the time, I drink a lot of cranberry  juice, coffee, daily r outine to keep moving,find what agrees with you. Good luck...(required),,,,Pat

18

(18 replies, posted in General Discussion)

Nancy, my name is Pat and my case has many  similarities to Ron's , I am eight years past complete resection, I also had a bilary restriction issue at the area where the bile ducts were rejoined. It was a year ago so it was about the same time.The doctors all talked about it and my surgeon who did the job seemed confident this was just scar tissue and to stent it. I was not jaunticed when I went for a MRI of the bile duct, I had a week of light tan colored stools and mild pain in liver area when I eat fat or drink a beer. I knew right away when things weren't right. One evening I had a few beers, it was hot out and I try not to drink too much  usually but the next day things seemed fine and my stools where normal dark brown again and very quickly my symptoms disappeared ....? Talk about crazy but true. And my symptoms have not returned. I talk with my Gastrointestinal doc and my theory is bile is very acidic, it can also act as drain cleaner on scar tissue. My gastro doctor laughs about this absurd possibility, and does not dispute it. A very lean diet with no alcohol seems the right and healthy thing to do for a resection patient. I love a prime rib dinner occasionally and my doctor says "If you can do a whole prime rib dinner without an issue you are doing well." So there it is.I use cannabis daily as well.I also have been diagnosed with Primary schlerosing cholangitis, which is a scarring condition of the bile duct. I am not a doctor, and my doctors have nothing to base a next move on either. I live each day as it comes and I am on easy street compared to most. My guardian angels are very effective, and I believe there is a spiritual twist to all of this and I try to demonstrate my appreciation to god every day.May god bless you both, and I hope you have an amazing turn for the better as I have, Pat

19

(18 replies, posted in General Discussion)

Nancy, I am sorry to hear of Rons latest setback.  I have been waiting to hear how he did in New York, and you may not have a computer with you so when you read this I hope things are better. I am at eight years plus passed resection and  they were doing blood scans once a year, just as with Ron. I just don't believe once a year is enough, and today I went for a blood draw to at least check for skewed liver enzymes. My question is this... How does a long term survivor of this awful killer keep a vigilant watch for its return? There is no set process because it is rare to get, and even more rare to survive beyond 5 years. Is there anyone with a plan for this after 5 years of survivorship ? Nancy and Ron you are both in my prayers, Pat

20

(9 replies, posted in General Discussion)

Sharon, my name is Pat and I had a resection (60% removal) partial bile duct and gall bladder in January of 06' at that time I was told chemo is ineffective against this cancer (intrahepatic) my tumor was small and fortunately I am eight and a half years past diagnosis. I was told by my oncologist this past spring that in the eyes of medicine I am cured, and at this point I am in the care of my gastroenterologist, who I see annually and who now will order follow up blood scans. For the record, my oncologist told me I am cured. It can happen, I have had the best years of my life since that surgery, and I am grateful and humbled with each new day. You will never feel "out of the woods" just live each day, each week, each month, and maybe each year as it is your last. It is the ultimate reason to do "what you always wanted to do" , and I mean as soon as you feel well enough, do what you always did and more, eat healthy and hopefully you will get the results you are praying for. I wish you great results, Pat

Makua, I am sorry to hear of all your sons difficulties, I did take Marinol for two years, it does help with appetite, Drabinol is one of over 100 cannabinoids, compounds unique to the cannabis plant and the only compound known to medicine to affect the human appetite. While your son is in Colorado he may want to try Cheeba Chews, the CBD/ quad dose will get him settled.It is too bad we are so far behind in most states, good luck, Marinol is available in all states, but not as effective as marijuana, Best wishes for your son, Pat

22

(10 replies, posted in Thought for the Day)

Marion, Gavin, Willow and Clare, I am happy to hear your thoughts and you are right and there is a lot in this world of ours that is not how we would wish it was. I know sharing my case and all I have is in hopes of others doing as well as I am. You should all be proud of what you have done with this site, I will try to continue to contribute and keep you all up to date, but I do take a break when it overwhelms me. For now I am doing well, I tried volunteering for a local cancer support group which I like, it was like applying for a job with a background check and all, ended up all they had for me was to distribute flyers for their main fundraiser. This was a little too invisible, and I felt I could make a bigger difference helping an old friend who had throat cancer, and had his larnyx removed and he did not drive. I was given medical power of attorney for him and for two years I drove him to all his appointments and spoke to his doctors for him, his radiation treatments required a mask to lock him in place, this caused him to have panic attacks during his treatments and he was truly afraid of the machine which is quite intimidating. I held his hand through all this and we beat his cancer. he was suddenly taken by an infection last year, and in recognition of all I did for her son, his mother gave me his prize possession an old convertible that had been in her garage for 28 years. I told her I would never sell it and I would remember him every time I touch it.People were making very large offers for this car, and this dear woman thought more of me and what I did for her son than any pile of money. Wow, every now and then selfless acts are rewarded. I love this sweet old woman and I have continued to help her til now. I show this car at local cruise ins, and I have taken her for rides in the car, and I know I have made her happy. These are the kind of distractions that have kept me from opening the laptop very often. When winter releases my area from its grip I will be out driving as well, so I will do what I can, Pat

23

(10 replies, posted in Thought for the Day)

Randi, Lainy, Darla, I don't know why god has chosen me to see and feel and Live what I have and I am not tempered by all this, I am no pillar of strength and I cry more now than when I was 6 months old. Life has made me aware and opened my eyes to the difficulties some must face. I try to share my triumphs and I hurt to read what this awful disease does to us. I am the little fish that escaped the whales mouth. I do not feel so happy as one would think. I feel for all the others, and I feel their pain.Life is a gift and a blessing,and every day is a miracle. It is hard for me to express the feelings I have for you all. Pat

24

(10 replies, posted in Thought for the Day)

To all who post here and moderators, You are one of my many blessings. I am grateful to all of you for the information and support that have helped things go so well for me. I have been blessed with health, and my oncologist told me last week I am cured, I will not be seeing him anymore. It has been a journey that taught me about life and death, about happiness and sorrow, about small victories and big ones. It has been increasingly difficult to post about good news amongst so much sad news. My key to dealing with this has been to find a way to help others who need it, every day, to give myself in some random act of help or kindness with no reward intended. I hope to find a way to contribute in the future, but words and thoughts of encouragement have not flowed well lately and I almost don't remember the feeling of laying in a hospital bed. I have read more than written lately, and I hope for a way to contribute. i wish you all health and happiness, Pat

Sadly its true.... sugar is ingredient no. 1 in many things, I always said america runs on sugar and gasoline. I went to the oncologist this week and he took a blood scan and said all is well . Dan, these are u.s. numbers so I don't know if they even mean anything to you, and I am not bragging either, just to share the numbers with you, my bilirubin total is 0.2, albumin 4.4,Alkaline Phosphatase 64, he said by medical definition I am cured and cancer free, I am not a cancer patient but a resected liver patient with bilary restriction issues, I will no longer see my oncologist, but I will now be in the care of my gastrointestinal doctor for these issues. My CEA was 3.6, which is what it always is, the doc says it is slightly elevated because I smoke cannabis , and not to worry. As far as what not to eat, deep fried anything you are playing with powerful stuff. If I eat KFC I can poop over the house. No fish and chips, I went to a picnic and ate a bratwurst someone didn't cook through and wow. Here is the answer, COOK FOR YOURSELF. If you eat out or eat anything prepared by others, you don't know how it was handled, or mishandled which is easy, I purchase my ingredients and prepare virtually all my own food, eat what you enjoy and cooking is fun. sorry to go on, Pat