My story with cancer seemed to start as a bit out of left field.
I had been going to my general practitioner with concerns and he ordered a blood test.
The next morning, I received the call that would transform my life forever.
My General Practioner believed that I had blood cancer and that I needed to get down to the emergency room at Methodist that morning. I was shocked. The rest of the day was a blur of phone calls, driving, and waiting in the ER. Also, blood. Lots and lots of blood work. That evening, I was given a room at the Simon Cancer Center and I started treatment. The next morning, a doctor came in to tell me my official diagnosis (acute myeloid leukemia) and that I would be in the hospital for three weeks and I would have consolidation chemo in the months ahead, until a match could be found to give me a life saving bone marrow transplant. In December of that year, I was admitted for the transplant, using an unrelated, international, donor. I was thrilled. Throughout the previous several months, I had hoped and prayed that someone would be found. I had come to rely on my hospital staff and the staff at the Leukemia and Lymphoma Society (LLS), a non-profit that works to better the lives of blood cancer patients. Their call center was almost a nightly call for my family to help us understand what we were going through. They were a comforting ear and a valuable resource in terms of financial help. Moving forward, in June of the next year I found out that my transplant had failed and that I would need another donor. The bone marrow transplant staff then turned to my brother (even though he was only a half match). It was their hope that because our cells were familiar, that I would have a better fighting chance. In July of 2018, I underwent my second transplant. Over the past two years, I am happy to say that leukemia has not reared its ugly head and that I’m continuing to go down a positive path. During this time, the Leukemia and Lymphoma Society has been right there with us, every step of the way. A few months ago, I saw a tweet from Leukemia and Lymphoma Society Advocacy Group. I thought that since I was starting to feel better, that I may be of some use and could share my story with lawmakers to make a meaningful change to healthcare for not just blood cancer patients, but for all patients. I sent a message to their twitter account and next thing I knew, I was being asked to be a volunteer advocate from Indiana. On May 20th, 2020, LLS held it’s Virtual Advocacy Day and asked volunteers, such as myself, to give our stories to our senators and representatives in Congress. I was teamed up with an LLS staff member and a friend of mine who is a fellow blood cancer survivor! We spoke with the staffers in Sen. Young’s office, in Rep. Baird’s office, and we were thrilled to speak directly with Rep. Brooks. In giving our stories, we were giving our lawmakers insight into how our lives have been affected by blood cancers and the struggles that we have had to overcome in terms of billing, insurance, etc. While our time with them was short, our two main focuses were on our stories, Medicare Part D prescription out of pocket maximums and ending surprise billing. I can’t tell you how amazing it was to be able to give back to an organization that did so much for my family. What was even more amazing was to be able to tell my story and to advocate for other patients. While I was initially nervous, it was absolutely thrilling to be able to feel like “yes, I made a difference”.