Rhio O’Connor’s story inspires me from different aspects. First, he inspires me because the only person I knew growing up that had cancer was my paternal grandfather. Not only did he have cancer but he had the same type that O’Connor did- mesothelioma. Mesothelioma (cancer of the mesothelium) is a disease in which cells of the mesothelium become abnormal and divide without control or order. They can invade and damage nearby tissues and organs. Cancer cells can also metastasize (spread) from their original site to other parts of the body. Most cases of mesothelioma begin in the pleura or peritoneum. My grandfather’s case was caused by his lifetime of extensive work as a sheet metal worker around asbestos before they knew the dangerous effects of this substance. He was a fairly healthy man who was crippled by this cancer and died within a year of diagnosis at the age of 67. I was close to my grandfather and was even there when he passed away on Thanksgiving.
To my surprise, several years later at the age of 15, I was diagnosed with a very rare type of cancer- Askin’s Tumor. My cancer was also in my chest but my initial tumor pressed on the top of my spinal cord. After a couple of months and back pain, it eventually led to the beginning of my body shutting down before I had emergency surgery.
Then, chemotherapy began immediately. Being an artist, my bald head became a challenging canvas-if people were going to stare I might as well give them something to see! After a year, I was gladly done. I struggled with feeling older and that continues to be challenging, but I have learned to make it a positive.
In December 2000, cancer was discovered in my bone marrow. It was discouraging but I was not giving up. For the next 5 months, I was in the hospital. Randi, a fellow patient, was fading quickly from a courageous fight with cancer. In her last hours, she looked at me and told me, “Rachel, I will keep fighting in heaven and you must promise me that you will never stop fighting here.” I have never broken my promise.
I missed the second half of my senior year but graduated with my class. Then, for my bone marrow transplant, I had a very intense regimen of chemotherapy in order to kill my entire immune system and brought me close to death. A few days later frozen cells were put into my body to grow a healthy immune system. They discovered I had 2 extremely serious infections but once again surpassed all odds and pulled through. I learned to walk and eat again, enjoying each day and started doing more charity work.
Fall came and I started college for the first time. Once again my body was screaming that something was wrong. We learned a new tumor was growing between my heart, lung, and spine. We had exhausted our medical options and I had weeks to live but I believed there is always hope.
This was when my love for art, poetry and helping others really took off. Doing creative things became my way of leaving myself behind. My goal was to continually have something to look forward to. I despised the thought that if I died, I would become another statistic. Three months passed and I seemed alright and got on with my life!
In the fall, a whole year having passed, I was still alive. My doctors had scoured the globe for options. All the experts believed that I definitely would not be cured ever.
By May 2004, a surgeon came to my hospital and wanted to take the tumor out. Surgery went smoothly and he removed the tumor that was size of a small Nerf football.
The biopsy results showed the tumor had completely died inside me. In medical terms, it is a completely unexplainable. It has been 5.5 years since that surgery and I am the only known case to survive a relapse of Askin’s Tumor following a bone marrow transplant. I find great joy in seeing the positive sides of everything I have been through.
My efforts took me all the way to Denmark to help give global awareness and raise money towards sarcoma cancer. Another positive example out of many is my trip to Washington D.C. where I talked to Congressmen about cancer funding. I am now the only nominated young adult member of the American Pain Foundation’s Pain Community Advisory Council.
I try to balance the advocacy work with other things like college. I have accepted that cancer will never leave me. It is embedded in me-physically, mentally, emotionally and spiritually. It makes me so grateful to be in such an amazing country with so many opportunities.
O’Connor’s story reminded me of the will to never give up on hope and how I felt that when I was facing horrible odds and then eventually a 0% chance of survival. With the help of my doctors, family and friends and God, we never gave up and tried every possible angle we could to try to extend my life expectancy. It was also important to do something each day that was enjoyable-no matter how small-because none of us really knows how long we have on this Earth.
Cancer is the best and worst thing that has ever happened to me. Because of it, I am driven to become an art therapist and continue helping others through my speaking, writing, art and volunteering. As Albert Einstein once said, “There are 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” I choose the latter. Miracles have allowed me to live and I am forever grateful.
Rachel
