Updated: Feb 5
Today is a very significant day in my family’s journey through a rare diagnosis. February 4, 2019 my world turned upside down. With one appointment we learned my husband’s life most likely would be cut short. We were a few weeks into our cancer journey. His tumor was found, biopsy done, results given and now it was time for the big scan. Today was the day for a full body PET scan to determine if the cancer had spread. We drove to New Orleans to consult with an oncologist highly recommended by a friend. For those that have not experienced a PET scan, they take a LONG time. All who face cancer know cancer requires a painful amount of waiting. Waiting on doctors, labs, scans, results, surgeries and ultimately to be cured. On this particular day, the waiting was agonizing for me. We were facing two scenarios. The most ideal one would be the tumor was localized to the bladder. The second scenario was metastatic disease and a much more complex road head. Of course, I had done my fair share of googling which contributed to the uneasiness I was feeling. After what seemed like an eternity, my husband returned to the waiting room and we proceeded to the oncologist for results. Finally, we sat across from the oncologist. The results were not ideal, and the conversation went something like this…
Doc: Well, I hate to be the one to tell you this man (as he stares at the floor and lets out a loud sigh). You are full of cancer…Stage 4 leiomyosarcoma
Taylor: So how long you think I have doc
Doc: 2 years maybe…if the chemo works
We talked some more; however, I do not recall what was spoken. I do remember the doctor leaving the room and I could hear what sounded like panic on the other side of the door. He and his nurse discussing a referral to MD Anderson, calls being made, and talk of beginning chemotherapy.
My husband, Taylor, and I sat silently in the room. Taylor had his hands over his head and his head between his legs. How does one wrap their mind around mortality? For me, how do I process the fact that I will lose my husband? We are born knowing we will die one day; however, facing death in your 30’s is quite shocking. What unfolded after this day was an absolute nightmare. I have made it my mission through Garage 10 to help others avoid this scenario.
We were referred to an oncologist in Baton Rouge to begin chemotherapy. We saw that doctor on February 14th, Valentine’s Day. Again, we were told Taylor’s disease was terminal, treatable not curable. Now we were told by more than one doctor that he did not have long to live, so on that day it became true for me. On that day I decided my husband was dying. Every single day after that, I thought of his death. Making this exceedingly difficult was that I had spent most of my career working as a hospice social worker. I know what death looks like. My working days were spent at the bedside of people dying, many dying from cancer. I imagined the day we would need hospice, the hospital bed in our bedroom and gathering around to say our goodbyes. I thought of his funeral, our beautiful girls growing up without their daddy, and I cried an incredible number of tears. Every second of every day I was haunted by thoughts of my husband’s death. I was told he would die, so I believed it. Becoming cured and cancer free was not a possibility I imagined.
One night after our girls were asleep, I was sitting on the couch crying. I remember this night vividly. My husband looked at me and said, Ashley you have to stop crying, I am still alive. At that moment, something clicked inside of me. Taylor was in fact still alive and feeling good. I had let fear and worry consume me. I had stopped living! I HAD LOST HOPE. I HAD LOST FAITH. I believe hope and faith can be used interchangeably as they are both the force that holds us through the darkness. Hope and faith keep us standing and moving forward.
In our case, the doctors were wrong. Taylor did not have Stage 4 cancer. He had a tumor, inflammatory myofibroblastic, which occurs in less than one in a million individuals. This tumor is so rare that it was not on the radar of the pathologists and oncologists looking at his scans and pathology. The activity which lit up all over the PET scan was NOT cancer. We would come to learn this over the next several months on the roller coaster ride that followed. Despite the oncologist insisting Taylor get a dose of chemo immediately, he chose not to. He made the decision to hear what MD Anderson had to say first. Being given such a grim prognosis, he thought do a few weeks really matter?
Traveling to a cancer specialty center saved my husband’s life. Now two years later, he is not only alive but completely cured and cancer free. Our mission at Garage 10 is to give financial gifts to individuals and families who need to travel to get to their right diagnosis and treatment. I realize some stories do not have a happy ending, the diagnosis sometimes is terminal, life deals an unfair card and the road ahead seems impossible. Despite the tragedies life will inevitably throw our way, we must always hold on to hope and faith. In holding on, we truly have nothing to lose. I often wonder what those dark days would have looked like had I held onto hope and faith.
Garage 10 wants to be that hope for those feeling hopeless with their disease. Facing a rare disease can be isolating. According to Global Genes, allies in rare disease, the average time to get an accurate rare diagnosis is 6-8 years and 95% of rare diseases do not have a single FDA approved treatment. Rare disease is expensive. The RIGHT diagnosis is priceless. Please consider a donation to Garage 10 to help bring hope and ease the burden of rare disease for our community. We need your help to fulfill our mission.