Providing hope to cholangiocarcinoma patients by raising and investing in breakthrough research to prevent and cure cholangiocarcinoma, and providing support as they navigate their journey through mentoring, advocacy, love and prayer.
LOVE, HOPE AND NOW A SPRINKLE OF SCIENCE
by LISA CRAINE
I attended ASCO (American Society of Clinical Oncology) for the first time this year representing The Research Advocate Institute and The Cleveland Clinic. My patient experience as a six year survivor of Stage IV Cholangiocarcinoma has driven me to learn as much as I possibly can absorb about cancer and share it with other patients and survivors.
I have mentored over 100 patients through 4th Angel Program, Imermans Angels, The Cholangiocarcinoma Foundation and other various support groups. My passion is to arm these survivors with the tools to navigate and secure the best possible treatment options. I am now equipped to add scientific knowledge to the love and hope I currently provide to my patients thanks to ASCO and my training through The Research Advocate Institute.
My first day I was overwhelmed by the 37,000 attendees all there to improve the life of cancer patients like me. I wanted to learn and attend everything but of course that was impossible. I felt like a student again and it was fun and challenging taking notes and having
"Aha Moments" when I thought I understood parts of a very scientific presentation. I learned the more I immersed myself in the science the more I could understand. I also realized I have so much to learn and the learning process will be ongoing and ever changing since science is a constantly moving game. I also learned that I am a contributor to the ongoing advances in cancer research by being a patient and being willing to share my story.
The conference made me feel like a true partner in the fight against cancer. The realization that it takes all of us to truly make a difference in improving the outcomes of all cancer diagnoses. The opportunity to network with researchers, clinicians, doctors, pharmaceutical companies, foundations and other patient advocates was invaluable. I realized that my job was to bring the voice of the patient to the doctors and researchers. The professionals I communicated with were very interested in the voice of the patient and the stories of survivors like me. On the second day I had an oncologist ask me what I thought was the most important thing I did as a patient advocate and I told him I provide " Love and Hope." He paused and repeated love and hope? I explained that without love and hope nothing else matters. We talked about giving hope to a patient who has a poor diagnosis and what does that look like. I told him as a patient I want to be told the truth about my diagnosis but I want it delivered in a loving and hopeful way. Just knowing that your medical team is on your side and not giving up on you means everything. I shared with him that in 2010 I was given six months to live and all my hope was drained from me. I was blessed with a referral from Dr. Arjun Venkat to The Cleveland Clinic and my new team has given me hope, love and promising treatment options. I explained my feeling is when your doctor has taken your hope away and put an expiration date on you it is time for a new doctor.
The thought in my mind each day as I raced from presentation to presentation was "It Takes A Village". You always hear "Multidisciplinary Team'" mentioned in conversation about a patients care and that usually includes an oncologist, surgeon and radiologist which is great but there are so many other pieces involved in the fight against cancer. The magnitude of ASCO made me aware of all the bright, talented and amazing professionals working towards a common goal. The village it takes to improve diagnostic tools, improve treatment options and cure cancer is endless. We are all one great big team with no boundaries working on a common goal. We are a Multidisciplinary Village.
My treatment at The Cleveland Clinic has always been part of a multidisciplinary team. My team includes the valets, the Red Coats who greet and welcome you, the receptionists, the secretaries, the schedulers, nurses, doctors, technicians, cleaning staff, food service and so many more. I have learned it does take a village to make a difference in the life of a cancer patient and now after attending ASCO my village just increased by 37,000.
My plan moving forward is to continue to become more involved in Patient Advocacy, learn as much as I can and to share my love, hope and knowledge with all of the wonderful cancer patients and survivors possible. "Hope is the ability to hear the music of tomorrow, faith is the courage to dance to it today."