April 9, 2013 at 8:43 pm #69574willowSpectator
Try to copy your introductory post and put it as a new post under the “Introductions” thread. That way, many more members will see it.
WillowApril 9, 2013 at 8:42 pm #69573willowSpectator
You are coming to a good place for support and information. Sounds like you don’t have an official diagnosis of cholangiocarcinoma but are very anxious to know what’s going on…understandably ! Glad your Dr didn’t mess around and is getting you to bigger hospital but most if the moderators on this site rec sending your test results to a handful of places (doctors) in the nation that have MZuCH more experience with these rare bile/liver diseases. You don’t necessarily have to visit in person but can start just by having the local hospital email all your scans and test results and initial diagnoses for a 2nd opinion.
This is the hardest time…then, once you have a plan in place it gets much easier mentally. No reason to think your life is over! Many simply see it as a chronic condition. For now , focus on nailing down the diagnosis.
WillowApril 9, 2013 at 7:39 pm #69572alancSpectator
Hi all. New member here who is scheduled for a whipple 4/13 @ Brigham and Womens. I am a 69 year young male who has been blessed to be married to my best friend Betty for 48 years. We raised 6 great children and now are blessed with 16 grandchidren.
I was on vacation in St Martin, my favorite island, and was fine at 8:30 am and felt lousy at 9 am. Returned home on 3/2 and called my GI Doctor who got me in very quickly. After hearing my symptoms he was convinced I had experienced a gallstone attack. Ultra sound, cat scan, endoscopy and ERCP results prompted him to refer me to Brigham and Womens for 2nd opinion.
Scrapings from ERCP were suspicious but not definitive. Other than having a pacemaker installed because of an electrical problem my health has been excellent.
Not sure what to expect will be found nor what the future holds at this point so I am somewhat of an emotional basket case at this time. My intent is to put up the best fight I am able to but by the same token do not want any extra ordinary efforts made and do have a living will. Hopefully I will be able to contribute to this forum in the future and provide insight and support to others.
One other thing one ofmy daughters did to keep family and friends informed was to set up a site for my case at caringbridge.org This will hopefully make it easier to keep folks informed and take some of that responsibility off my wife’s shoulders.March 11, 2013 at 10:53 pm #69571
Pam thank you! All the best to you. I look forward to be part of the community.
PhilipMarch 11, 2013 at 4:44 pm #69570pamelaSpectator
Welcome to this site and great news that you are a survivor. Thank you so much for participating in a walk that benefits the CC Foundation. That is so awesome of you. Good luck with the Jeep and I wish you all the best with your health.
-PamMarch 11, 2013 at 4:40 pm #69569pamelaSpectator
What a wonderful, touching video. You can tell that Jeep sure did make him happy. I sat and watched the video with tears running down my face. It is so unfair that anyone has to get this cancer. I understand the love for cars and trucks that men have. My husband is crazy about them and works in the automotive industry. My Dad used to build race cars and has even built a motor home!! I am glad your son had this project and hope you use the Jeep to spread the word about your son and CC. God bless you.
-PamMarch 11, 2013 at 4:15 pm #69568darlaSpectator
Oh MY! I agree with Lainy. That is a totally awesome video as is his beautiful smile. I am sure he is still smiling knowing how much love went into bringing that project to fruition for him and that it will go on in his honor. It brought tears to my eyes. Yes you can truely feel the love. Thanks so much for sharing this with all of us.
Love & Hugs,
DarlaMarch 10, 2013 at 5:29 pm #69567RandiSpectator
I just watched the video that was made for your son. I am moved beyond words. What a beautiful tribute and what a wonderful son. As Lainy said, he was always smiling. Life is truly unfair sometimes.
I have always liked that Supertramp song but I can’t say I’ve ever listened to it with the same feelings and I am sure I will never hear it again without thinking of your beautiful brave son.
-Randi-March 10, 2013 at 4:54 pm #69566
OH my goodness, you are just full of wonderful surprises. A BIG thank you to you and to Brooke and I am so happy you have joined us, sorry of course that you had to but you are making this much better place to be. Much good luck on the walk and agin you are such a welcome addition to our Board.March 10, 2013 at 4:28 pm #69565
Lainy, thank you for your support. Also posted on the foundation calendar and the loose leaf notebook is a walk to raise money and awareness that my wife Brooke and myself organize. This will be our third walk on March 30th. All funds are sent to the foundation. We Hike for HOPE.March 10, 2013 at 4:12 pm #69564
Thank you so much, Philip, great story with lots of HOPE for our other members as well. Your story is just what we need on here and please don’t be a stranger now, visit often. And by all means we love to hear good news after the Scans.March 10, 2013 at 4:02 pm #69563
My journey with CC started May of 2009. Was feeling off and turning yellow. Was sent for CT scans and MRI. Next visit was to the local hospital for a endoscope and a stent placement. They tried for three hours to get around the tumor and threw in the towel. I spent that Memorial Weekend in the hospital with Pancreatitis. In the long run this was the best thing because I was sent to Yale New Haven Hospital. There I was placed with a team of Doctors. Doctor Salem was the main physician and head of surgery. I had a liver resection, 30%. Spent eleven days in the hospital because of an infection. Was sent home with a drain because of the infection. This was taken out a week or so later. I was diagnosed with stage IB. Recovery was slow but steady. About a month after I was sent to Dr. Jill Lacy who would be my Oncologist. Had about six months of Adjuvant Therapy. The cocktail was Cisplatin and Gemcitabine. With a few bumps here and there we as a family got through it. Follow up was blood test every three months with CT scans every six months. This has been changed to just scans every six month with my next one this April. I live every moment knowing how fortunate I have been.March 10, 2013 at 3:10 pm #69562notdoneyetSpectator
Thank you Phillip and Lainy. My daughter-in-law worked very hard on the video. I think she missed her calling. Phillip please fight hard and live every moment! Enjoy your Willys-the greatest vehicle ever made, lol! Tracker is smiling from above I’m sure!March 10, 2013 at 3:04 pm #69561
Hi Philip and welcome to our extraordinary family and congratulations you are another Super Hero! As a 4 year survivor you can bring HOPE to our Board so if you don’t mind could we know about your journey. We are a curious lot as we learn from each other on this Site. On your 4 years I owe you my big YIPPEE! Also have a blast with the Willy.March 10, 2013 at 2:58 pm #69560
Thank you for sharing. That was truly touching and amazing. It had hit a special cord for me. I had just acquired a 1952 Willys Jeep to restore. Now every moment spent restoring will be thoughts of your son. I’m coming up on four years as a survivor. I wish you and your family all my love.
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