On Thursday, Sept. 5th, 2013, a group of wonderful people met in a diner outside of New Hope, PA. We were virtually strangers, from different areas of Pennsylvania and New Jersey. The one thing we all had in common? Cholangiocarcinoma. 5 of us are patients; one of us is a former caregiver who still keeps in touch with our CC family.
By screen name, from left to right, we are: Clawler, En11, Karen, Kris00j, Mcwgoat, Rvb. I’m kris00j… I am the one in the back of our group photo.
I’ve been a member now for 2 1/2 years and have tried to meet other cc patients on the board. Previously I met Kim, who has since passed on. I also met Pam and her wonderful Lauren, and Lisa Craine, and Tiff, before her transplant!
My goal was to have a meeting with those of us in our local community and start a support group. I am no psychologist, nor do I have any training, but I thought it would be good to connect with others who are battling, and see the different approaches to this darned fight.
Of the 5 patients, we presented from asymptomatic to having symptoms. I made everyone smile because I showed up on my scooter! (It’s a 400cc, so it isn’t small!)
We all shared our “bios”. There was some sadness, and lots of encouragement. Then we jumped into the fun stuff: plans! There were many! En11 has barely been home, he shared his travel schedules! En11 has travel plans every off week. And Clawler has plans to leave for California the day following his chemo. Me? I am making plans to visit my parents.
It was wonderful to see and hear positive energy shared and how we see others trying to live life to the fullest. This fight certainly does change things.
I would like to keep our support group going, every month or two. I think it could be a wonderful experience for all of us.
A few comments from the others:
“Thank you, Kris, for facilitating this meeting!”
“Today was the first time I met anyone with Cholangiocarcinoma since my diagnosis in March. I was concerned that our meeting might turn out to be depressing, but that certainly was not the case! I was struck by how positive everyone was. It’s so nice to see that all of us are continuing to live such full lives despite this challenge– traveling, laughing, working (a little), and helping our family and friends cope with our illness.”
“Thanks for sharing your stories and treatment experiences. How refreshing to discuss all of this with people whom truly understand. I look forward to seeing you again.”
“Kris, you are the bomb! A wonderful idea that came at just the right time with a very nice turn out. It was such an intimate group in a quiet enough setting that I think we got to know more about each other than had there been a much larger turn out. It opened the door for a larger turnout, which I hope, will be the case next go ’round. “
“It was a true test of the good time we were having that we lost track of the time if it were not for Eric. They say time flies when you are having fun. And as Chris mentioned, it was fun, not depressing at all. How could it be depressing when we are all fighters and survivors or their loved ones.”
“Well, best wishes to my new friends. And same for a peaceful week ahead.”
“Well said Renee!!! I look forward to our next get together!!!”
And En11 said:
“What an inspiring group of people! I needed to know there is hope for us…and discovered courage as well. Thinking of you all and I looking forward to seeing you again in a few months. Thanks Kris for taking the lead!”
I would like to personally thank all of you for making the trip to meet with others! I know for a couple of you it was over an hour. But from the laughs and cries we had (mostly laughs) I hope everyone feels as I do: that it was well worth the effort!
And while I love the kudos, it was also very inspiring to me, to meet others battling this same disease. I hope at our next meeting there will be a few others who will join us in New Hope, PA.
We would love to have another PA/NJ CC Connection meeting in November. Either in New Hope again, or possibly in Peddlers Village area, where we are bound to see scarecrows or holiday decorations. I welcome your suggestions. I am all ears!
Please feel free to email me at email@example.com with your availability, so I can hopefully find a great date for most if not all of the “locals”!
Until next time, be well.
Kris / kris00j
Congratulations to our 2013 Young Investigator Award Recipient- Dr. Supriya Saha, MD, PhD of Massachusetts General Hospital.
Dr. Saha’s research study entitled “Targeting Mutant IDH1 in a Murine Model of Cholangiocarcinoma” is supported by a $50,000 one time Young Investigator Award funded by The Cholangiocarcinoma Foundation and presented at the Conquer Cancer Awards Dinner June 1st during ASCO in Chicago.Read More
Ray Manzarek, legendary keyboardist who founded The Doors in 1965 with fellow UCLA film school alum Jim Morrison, died of cancer on May 20, 2013, at age 74. Manzarek fought a long battle with Cholangiocarcinoma.Read More
Donation checks go to The Cholangiocarcinoma Foundation.
Donations to defray the costs of the walk and wristbands can be given to the local walk coordinator.
Let us know and we will announce your 2013 walk! bileductwalk.blogspot.com
Contact: Joyce Cmiel (mailto:firstname.lastname@example.org)
10:00 AM. In honor of Philip Schaller and in Memory of Bill Whaley
Falls River Preserve, Ivoryton, CT 06442
For more info, contact Brooke Adamson (mailto:email@example.com) (860) 767-2532
In memory of Levan Gray and Michael Crowley
Stoneybrook Golf & Country Club, Sarasota, Florida
For more info, contact Elizabeth & Wes Gray (mailto:firstname.lastname@example.org)
10:00 AM Mountainview, CA
For more info contact James Chien (mailto:email@example.com)
In memory of Levan Gray, Paul Ernst and Michael Crowley
Freedom Park, Charlotte NC, For more info, contact Joyce Cmiel
In memory of Sandy McGarvey
Temecula, California, For more info, contact Vicky Moore
In memory of Levan Gray
Woodbine, MD, For more info, contact Sue Lockhoff
Oconomowoc Walk for Awareness
In memory of Lynne Sater and Jim Tell
Fowler Lake, Oconomowoc, Wisconsin, For more info, contact Mary Beth Tell
In memory of Antoinette B. Chavez
Memorial Park, Houston, Texas, For more info, contact Amanda Hance
Hike for Hope on March 30, 2013 at 10 am
Falls River Preserve, Ivoryton, Connecticut.
Honoring the Memory of Bill Waley of Deep River, Connecticut and Philip Schaller of Ivoryton, Connecticut. a BDC survivor.
For more information contact: Brooke Adamson
The Foundation has been invited to attend the Medical College of Wisconsin’s “Updates in Gastrointestinal Oncology” on March 23rd. The program will cover foregut, liver, pancreas, colorectal, and regional approaches to advanced malignancies. The guest faculty will be Dr. Timothy M. Pawlik, Associate Professor of Surgery and Chief of Surgical Oncology from Johns Hopkins. The lectures will review recent abstracts from the ASCO® GI Symposium Meeting in San Francisco earlier this year, and focus on the multidisciplinary advances being made in the field. Ample discussion time has been built into the program as well as case presentations highlighting interventional, radiation and transplant approaches in gastrointestinal cancer.