Reading this blog you get a lot of one person’s perspective, but so many lives have been impacted by cholangiocarcinoma. When I asked fellow patients to give their perspectives from the conference, Tom, Heidi, Catherine, and Lois all graciously offered to share their thoughts. If any readers didn’t share but would like to, please feel free to do so in the comments!
Since My diagnosis in 2007, dramatic strides have been made in fighting cholangiocarcinoma, but we are far from done. We need to make remission the norm, not the exception. Cholangiocarcinoma is notoriously difficult to treat because it is aggressive and progresses quickly. Every cancer patient deserves a fair fight. The Cholangiocarcinoma Foundation is leading the way towards achieving a fair fight for our cancer. Genetics (testing the individual tumors) vs. location of the tumor, makes it possible for the first time for effective treatments of our rare disease. What is required for progress to continue (1) Better education for those caring for Cholangiocarcinoma patients; (2) A clearer understanding of treatment options (including immunotherapies, resulting from larger clinical trials); (3) Greater engagement between patients and research communities to understand the root cause of this dreaded disease. Especially, why is the trend increasing for women between the age of 18-44 and the overall rates for this dreaded disease are going up? Lastly, but most importantly, the spirit and bond of Cholangiocarcinoma patients is beyond measure. This was one of the most amazing experiences of my life. This experience was filled with hope, Love and spirit.
I found out and joined a Facebook group called Cholangiocarcinoma Warriors in July 2017. I was amazed at what a wonderfully supportive and loving group these warriors were. I had been diagnosed with intrahepatic bile duct cancer in June 29, 2011, had ¾ of my liver resected, followed by months of chemo and 25 rounds of radiation. I was also diagnosed with Lynch’s Syndrome. I had a year of various problems and was in and out of the hospital, but since then, have had no reoccurrence or any other issues and am feeling healthy and energetic thanks to some natural products I take.
I wish I had known about the CC Warrior group when I was going through all my procedures because I know they would have helped me during this scary time. No one I talked to had ever heard of this cancer and I hadn’t met anyone with it either. I heard about the conference on this Facebook page and really didn’t think much about it. I started reading comments from people who had attended who were encouraging people to go and were looking forward to seeing their fellow CC warriors at the conference. I still didn’t think I needed to go because I was not going through any treatment and hadn’t for years. As I read the posts daily from all these people, so many of them very young, and all the problems they were having like the clinical trials, physical pain, nausea, fatigue, the recurrences, etc. I really started feeling survivor’s guilt. I am 64 years old, have 3 children, 11 grandchildren, married for almost 45 years, have traveled a lot, had a very successful teaching career and a wonderful life, so why am I still here? These young people, many with children, have so much life ahead of them. It is not fair, but as a principal once told me, “Life is not fair.” One way I could help, was to become an advocate and raise awareness and funds for research for treatments or cure. So, I decided to go to the conference and learn more about it so I could do that. I took notes and learned a lot more about this rare cancer from doctors, researchers, government agencies, patients, and caretakers from all over the world. We not only get to hear the latest trends in the treatment of CC, but also statistics, cancer and diet, research, clinical trials, drugs, CC organizations, etc. But, we also got the chance to ask them questions and even have meals with them. This gave hope to the patients and caretakers and the doctors and researchers had the opportunity to meet the people they are helping. But one of the very best parts of the Cholangiocarcinoma Conference was the new friendships that I made. I don’t think I have ever felt such a bond with people I had just met and only knew online in a Facebook group. I loved going to our patient lounge where we had the chance to get to know each other, cry, and laugh. This room was filled with a group of amazing and strong people who have experienced a lot of challenges and who are fighting for their life. I find myself thinking of them and praying for them daily. I was told by many that the fact that I was still alive after almost 7 years gave them hope because many felt like it was a death sentence. I had questioned myself whether it was worth coming, and for many reasons, I am so very thankful that I did and cannot wait to return next year to reunite with my CC Warrior friends and meet new ones.
-Heidi Garringer Rhea
My most exciting moment was meeting Patrick Corrigan (Hercules) and Tom Leitze who have more CC longevity than me!! And meeting my first ever transplant patients, Jessica and Kevin!! And of course our CC family. My most emotional moment was giving my hero's Dr. Chapman name and info to several people looking for HOPE, but especially the 3 siblings looking for help for their baby brother and then while talking to them getting the text from the family who came from LA to St. Louis to see Dr. Chapman, saying he could help them after another hospital said no!! That moment just overwhelmed me. My most fun and unusual moment was after randomly talking to Greg Feldman and sharing our stories, he mentioned he comes to St. Louis to visit his son, so being nosy I asked what his son did and where he lived, it turned out he lived close to Barnes and was an engineer for Marathon Refinery in Wood River!! Well Marathon is our company's client and Greg's son Keith and my Jeff know each other!! They both had cholangio in their life and neither knew and exchanged chit chat for years!! Strange but true!!
I have waited a few days to post as words could not express. But today I think the processing is done! I have never been to a place where all you do is walk through a door and you can just feel the love surround you. A room of people all with one thing in common, Cancer. But not one person I spoke with or listened to speak has let it define them. I felt the hope and love and saw it in people’s faces. I am NED and am truly Blessed for that but also know that this aggressive monster has a mind of its own. Only God knows my next direction but for today I choose live, laugh and love! (These three words are all over my home) so thank you fellow warriors who are still in the battle, the ones who are NED and the wonderful caregivers. Especially the ones whose loved ones have gone but they chose to continue their fight. Thank you for the love and kindness shown to me during this conference filled with HOPE and LOVE. I will see you all again next year
-Lois Calhoun Cherubin
Stay tuned for our next post in two weeks on mouse models and the emerging activity around mouse avatars.