Before you start reading this, I want you to know that it is not finished. I hope it will never be finished. This is my story, but every day I find new research, new food, new exercises and always a new attitude that continue to strengthen me.
Sometimes you can be at the right place at the right time but still have the wrong thing happen. I was sitting in a Northwestern Illinois University Hospital room with a friend who was recovering from major surgery when the first seizure arrived. The grand maul hit me like a two-ton train causing my body and brain to revolt against each other. I am not sure how long I was out, but when I came to, there was a room full of people, and they were taking the only person I knew in a three hundred mile radius out in a wheel chair. The room was full of doctors, nurses, and medical students and I had no clue what was going on. Some people believe moments like these are only coincidences. I tend to think me standing in that hospital, the seventh best neuro-oncology hospital in the country, when my seizure hit is (I apologize for the cliché) a miracle.
The doctors worked quickly. I had a CT scan, and an MRI by the end of the night, and a biopsy by the end of the next day. It was quickly confirmed the tennis ball sized mass on the left frontal lobe of my brain was a Low Grade Astrocytoma. An astrocytoma is formed from star shaped cells called astrocytes that grow into the nerve endings. Normally, men at the median age of 35 were diagnosed. My astrocytoma, or Tommy the Tumor, which I refer to it as, and I fit the mold perfectly. I was a young 31-year-old male and Tommy had quickly done his work as a low-grade diffuse astrocytoma and spread his tumor tiny microscopic tentacles across the left frontal lobe of my brain. Those tentacles caused the tumor to be inoperable.
When I got home, I typed in astrocytoma very carefully into my google search, remembering how I had to double check the spelling. What I found out is there isn’t “a lot” to find out. Low-grade astrocytoma is pretty uncommon, though new research is being done every day. Nearly 1500 people in North America are believed to find their own Tommy Tumors, yearly. Patients with this type of cancer, according to studies, will live anywhere from two to twenty years. What I have realized since this first time I carefully wrote in astrocytoma in my google search is there is so much more for me to learn.
I was reading an article on LGA (low-grade astrocytoma) when I somehow managed to click myself onto story of James “Rhio” O’Connor’s story by accident. Rhio’s “Tommy” was deadlier than my own in the form of Mesothelioma. What I have learned from Mr. O’Connor is that you can’t let other people tell you who you are, or where you are going. This man was told he wouldn’t make it another year, but lived a great six more years. He devoured anything he could find, learning about religions, diet, medicines and vitamins, and changed his entire lifestyle. I realized right there, reading just a summary of O’Connor’s life, Rhio’s life was shaped mostly by his attitude and I can learn a lot from this man. So that’s where I started.
In the week following my first seizure, I made the decision to undergo six weeks of radiation treatment. As of this date, the tumor has shrunken approximately one millimeter. My last MRI showed no change from the previous one. I have also noticed some symptoms that could be attributed to my condition, such as memory lapses, simple mistakes that should not have been made, and some twitching on my left side. The doctor refers to these as “mini-seizures.” My short-term memory is not what it used to be. I am back in school now trying to finish a degree and there are days when I feel frustrated, like my brain isn’t working. Sometimes my speech is disrupted because of Tommy. My speech comes out of my mouth, people look at me funny, and I think, “What was that?” I have lost jobs, not entirely due to Tommy, but sometimes it’s hard not blame him. My balance has seemed out of whack and sometimes I just get confused about my current location and situation.
Since the onset of cancer, I have changed. I am more convinced that my attitude toward “Tommy” is the main change in my life, and the main reason why I am doing well today. I took him in stride and realized that if I couldn’t absolutely get rid of him, because he is inoperable, than I would have to at least learn how to have a normal lifestyle with him. Mostly, I focus on how to make my life better, and never concentrate on how this hinders me. I am hands down more active than I used to be, riding my bike and walking more and driving my car less. At first, I was unauthorized to drive because of my seizures, but I realized my body felt better. I quickly realized the small changes affected my life in large ways. I don’t drink or smoke like I used to and my diet is filled with organic and locally grown produce.
I’m pretty sure that James “Rhio” O’Conner knew his attitude could take his body further in life. Maybe it’s something cancer teaches you if you listen. Well, I’ve started listening. It’s not always clear, but most days I realize just how awesome my life is and strive to make it better. I spend a good deal of time on the internet and in libraries continuing to research astrocytoma, and exploring new studies that will help me better my life, but mostly, I believe it’s my attitude. Usually, I tell people I have a tumor, and rarely say cancer. No one wants to have “brain cancer”. That doesn’t sound like fun at all. James “Rhio” O’Connor is an inspiration to all those, myself included, with similar conditions to never give up. Yes, this tumor causes my life to be harder sometimes, but it has not caused it to end. Until the day that I do kick the bucket, I’ll be thankful for what I have, for the Power in my life, and for the “coincidences” that I have gotten me here.