By Kim Balkus, TargetCancer Foundation Advocacy Council Member
Writing a blog post after attending the 2018 Cholangiocarcinoma Foundation Annual Conference sounds like an easy task, right? Quite the contrary. I returned home from the conference almost two weeks ago. It was an amazing experience! I met new friends and connected with friends I had met at TargetCancer Foundation events in the past. I have never attended a conference with subject matter so close to my heart. I even knew that I would be writing a blog post upon my return. I have thought about the blog post and written it in my head daily since my return. Putting my experience into words has proven to be so much harder!
First, a little background. My mother, Geri Keegan, was diagnosed with cholangiocarcinoma in August 2013. She has been treated at the Massachusetts General Hospital since diagnosis. She had a liver resection, chemotherapy, and radiation therapy. TargetCancer Foundation shared her story in February 2016. In June 2017, Mass General honored my mom as one of the one hundred. Our family is so thankful to have found TargetCancer Foundation as they helped us to understand this rare cancer and offered understanding, kindness, and compassion.
I am truly grateful for TargetCancer Foundation’s continued commitment to funding cholangiocarcinoma research. Over the last seven years, TargetCancer Foundation has funded close to $775k in grants which is astonishing. This has made a tremendous scientific impact on understanding this rare cancer. I often wonder what our family would have done if we hadn’t found this organization when my mom was diagnosed. Our family has learned so much information from TargetCancer Foundation over the last four years that we are able to share this valuable information with patients who are newly diagnosed.
An opportunity to attend 2018 Cholangiocarcinoma Foundation Annual Conference. I was thrilled to learn that I would have the opportunity to attend the 2018 Cholangiocarcinoma Foundation Annual Conference as a representative of TargetCancer Foundation. I had heard about the conference and had met others who had attended. However, I had no idea what to expect. I arrived at the conference in Salt Lake City on Tuesday, January 30, 2018. I was greeted with kindness and smiles when I checked in at registration. I walked over to the patient lounge to look around, and to meet others. As I was looking around, a woman introduced herself to me. She told me she had been the caregiver for her husband. I immediately felt a connection. There is no such thing as a handshake introduction at this conference. Hugs replace handshake introductions.
Meet and Greet Dinner. I had scheduled my arrival to Salt Lake City so that I could attend the dinner for those who arrived early. When I walked into the room, I noticed the room was full of people wearing a variety of green clothing already making connections. I was welcomed and invited to join a table that was already full so I pulled over an extra chair. I sat next to a woman who had been the caregiver for her husband. Also sitting at the table was a patient being treated at Mass General and quickly learned that she had the same surgeon as my mom. She was attending the conference with her husband. I also met someone who works at a pharmaceutical company and who lives in Massachusetts.
The Conference. I attended the conference sessions on Wednesday and Thursday. Wednesday’s programming was developed for patients and caregivers. Doctors, researchers, and medical professionals shared information about cholangiocarcinoma, explaining what it is, where it is located in the body, how it is detected, and treatment options.
They also discussed factors that could increase the risk of getting this rare cancer. Cancer and nutrition was also discussed. I listened to a patient sharing her incredibly moving story as my eyes filled with tears. I also listened to a caregiver telling her story about caring for her husband. She was calm, her voice controlled, and I kept wondering how she kept herself so composed and able to share her story.
During the breakout session on this day, I attended the caregiver session with Dr. Geret Giles. This session spoke directly to me. I desperately needed to hear this information. Dr. Giles’ session focused on how it is essential for caregivers to take care of themselves so that they are able to provide the best care possible to their loved one. During this session, Bryan Lindsey introduced himself to me and we talked about a comment that I had made during the session. It was nice to hear his thoughts and he shared his family’s experience with cholangiocarcinoma. On this day, I introduced myself to Stacie Lindsey. I wanted to thank her in-person for everything her and her team at the Cholangiocarcinoma Foundation was doing.
On Thursday morning before the medical and scientific programming began, I sat at breakfast with a woman who has cholangiocarcinoma and was attending the conference with her husband. This day was packed with medical and scientific information that was extremely interesting. However, I did not understand the depth of information nor did I realize how much focus and attention was being given to this disease by so many skilled professionals. I kept thinking that even though I was a non-medical professional and I could not follow some of the conversation, at least all of the medical professionals in the room understood the information being shared. That thought alone comforted me and provided hope. The medical professionals were approachable, encouraged participants to call them by their first names and spent much time talking with others.
During the patient perspective on this day, a woman shared her story of getting ready to start a clinical trial. I listened intently to her story through tears several times, as she talked about her experience. During the conference, a woman came up to me and introduced herself. She told me that her mom had been treated at Mass General and that she had heard me ask a question during the caregiver session so she wanted to introduce herself. We immediately connected, realized we were both on the same return flight back to Boston and have been in touch several times since the conference. I returned to the patient lounge at the end of the day on Thursday which is where I had started the conference.
Unfortunately, my mom was not well enough to join me at the conference in Salt Lake City. I was so inspired by everything that I had seen and heard during the conference, and I asked those in the patient lounge if they would be willing to record a video that included messages that I could send back home to my mom. I wanted my mom to see and hear first-hand from this incredibly inspiring group. Everyone jumped right in! They all sent messages of love, kindness, and well wishes.
Overall experience on attending the conference. I thoroughly enjoyed posting on the TargetCancer Foundation Facebook page while I was in Salt Lake City. I tried to share information that others might find helpful to read so that they could stay up-to-date. Attending the conference with TargetCancer Foundation Executive Director, Jim Palma, was a really wonderful and rewarding experience. I am so grateful to TargetCancer Foundation for this opportunity. The information that I learned along with the friendships that I made mean everything to me.