About 4 years ago, I awoke to the alarm on my cell phone, and for some reason it seemed to be extra loud this time. I had probably only slept for about 2 hours, but still, I anxiously jumped out of bed with a nervous sense of excitement. Today was the day that would forever change the path of my life. Today was the day that I was headed to the Mayo Clinic Hospital in Phoenix Arizona to have an extremely risky abdominal cancer surgery with no real guarantees that I would even survive it. I had no idea that today was the day that would begin the toughest fight of my life.
You see, at the age of 51, I was diagnosed with “Pseudomyxoma Peritonei secondary to Well-Differentiated Mucinous Adenocarcinoma of the Appendix”. Ultimately this means that years ago, a cluster of cancerous cells had formed in my appendix which caused it to eventually explode. Subsequent to this painful event, the cancerous cells spread themselves throughout my abdominal cavity attaching and growing on the exterior of several organs and producing a considerable amount of ascites fluid. My surgeon explained to me that my condition was extremely rare, and risky with maybe a 30% chance of survival. He agreed to perform the surgery, but looked me in the eyes and said only if I will agree to do my part and be willing to fight for my life!
After the twelve and a half hour long surgery, I woke up to my family hovering over me, and praying for strength and healing. As I became more aware of where I was, I began to notice the multiple tubes, cords and electronic devices attached to me. The doctors and nurses were constantly coming in to check on me, making adjustments to my I.V., monitoring my pain level, and recording my vital signs. A little later, I was paid a visit by my surgeon and he introduced me to someone referred to as my ostomy nurse. I didn’t even realize that I had this bag attached to my abdomen until she asked for my permission to inspect it. Prior to the surgery, I remember my surgeon explaining to me and my wife that an ostomy bag was a possibility, but this was the least of my concerns and I didn’t really comprehend what that actually meant. Along with a couple of other organs, my colon was completely removed and I now had to embrace life with an ileostomy.
Robert at the Arizona Run for Resilience Ostomy 5k, “the sense of family, acceptance and understanding at this event provided much needed encouragement.”
For the first year, I dealt with it as best as I could, but in the back of my mind I believed that soon, I would be able to have the reversal surgery and no longer have to deal with an ostomy. As I was approaching the one year anniversary of becoming an ostomate, on Facebook I came in contact with a beautiful soul by the name of Jearlean Taylor. You have probably heard of her, and know that she has been a double ostomate since early childhood. We chatted for a while, and after a detailed discussion, I was convinced that having an ostomy wasn’t so bad. A few days later, I sat down with my surgeon to discuss the possibility of the reversal surgery, and we concluded that in my case, I would actually enjoy a better quality of life by keeping my ileostomy, which now has been named Paco.
Now that the decision had been made to keep Paco, I began to research ostomies and discovered the United Ostomy Associations of America. Come to find out, they were having an ostomy conference in California the very next month, so I
Robert at UOAA’s National Conference where he discovered he was welcomed into the “ostomy family.”
booked it, and made my way to Cali. Not really knowing what to expect, I was pleasantly surprised and almost overwhelmed with gratitude as I was so warmly embraced into the ostomate family. I learned so much about ostomies, and the stories shared by other ostomates really inspired me and gave me the courage to now tell my story. Last year, I finally felt I was physically strong enough to participate by walking in the Run For Resilience Ostomy 5K in Mesa, Arizona. Again, the sense of family, acceptance and understanding at this event provided much-needed encouragement.
I am inspired to inspire others by publicly sharing my journey of conquering cancer and living with an ostomy. Through music, speaking and near the completion of my first book, I am telling it all so that others will realize that life experiences will ultimately make you, and not break you. I have come to the realization that my ileostomy has not only changed my way of life but has actually contributed to saving my life. I am forever grateful…
“It’s easy to say what you’re willing to die for, but there is freedom in knowing what you’re willing to live for”.
–Robert Harrion
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