James “Rhio” O’Connor was diagnosed with a deadly form of cancer, known as mesothelioma. As my great Uncle Harold (Anderegg) lost his fight with this disease, I understand the need to take on this cancer on your own terms. Rhio was diagnosed with mesothelioma and given the liklihood that he wouldn’t live past one year. He decided that he wouldn’t just take what he was given, but that he would look for what he needed. By researching and pursuing alternatives, and living his life to its fullest, he managed to fulfill 6 more wonderful years. He was such a positive influence and inspiration that this scholarship was created in his honor.
Rhio’s story is a true inspiration to me because I know that my uncle followed a similar path and thrived for another 3 years before losing his battle. If I were to find out tomorrow that I had been exposed to asbestos, and had developed mesothelioma from it, I would of course have to take a day out of my life to think about my entire life up to that point. Anyone who gets any kind of diagnosis that is life altering, must first admit that they have to mourn for what they thought they had. But in that same manner, they have to limit the time of mourning, and then get on with living.
As I have been raised with parents who are researchers, I have come to realize that some emotion has to be removed from the equation at the beginning, otherwise, opinion and facts get muddied together, and no true, or good decisions can be the result. My first action after my diagnosis and day of thought would be to contact the diagnosing physician. They always offer for you to call them later, when you can better absorb more of their information. I would ask for them to describe the standard course of action to treat the mesothelioma. I would then ask them, “If this was you, what would you do, in order from first to last?” At that point, I would go for the second opinion. I would never want to take on any kind of life threatening treatment (and all cancer treatments are life threatening, after all, you ARE trying to kill “eternal” cells) without a second opinion.
If the second opinion matches the first, I would ask both physicians what type of alternative treatments they had heard of that might offer any kind of extra time. I would also ask them to list charlatan, or “snake oil” treatments that they would avoid. While compiling all this information, I would also be searching for all the historical and current data on mesothelioma and its treatments on the internet and in local libraries, both public and university. The information would have to be properly organized according to chronology of treatments over time, potential treatments, and across all, their cost and what I could and couldn’t depend on insurance to help me with. My information would end up as a pro- / con- list. I always try to be smart about my medical decisions, but I also try to realize the financial restraints I could be putting on myself and those around me.
My next large goal would be to search out other individuals who either had the disease, or who know or had known someone who had experienced mesothelioma. These people could provide the experience I would need to be facing. These are probably the people that I would start asking about previous, current, and potential treatments. They could tell me when the treatments had been worse than the condition, and when the treatments had made life bearable and enjoyable. These people would probably become another family to me. They would strengthen me, be honest with me, and support me and my family through whatever was coming.
When my research was gathered from the medical professionals, the internet and libraries, and other survivors and/or the loved ones of previous mesothelioma patients, I would more than likely consult with others in the medical field, first those in oncology and then other medical experts who are not in cancer research. My mother has shown me, as she has worked to help me thrive with my cerebral palsy and scoliosis, another perspective from another field of medicine can be just what the doctor ordered. I have discussed my neurological surgeries with my dentist and my urologist, and can honestly tell you that they have considered perspectives of my treatment that my neurologist never even thought of. I would definitely make sure that all my physicians and advisors would come together for one large meeting to design my treatment. If one can have a half day conference to decide on the shape of table (as Congress did); it should be no issue to gather people to decide on how to save my life. My conference would include the one or two oncologists, at least two other medical doctors from other fields, one or two friends, possibly a family member (if they promise to maintain themselves without tears) a psychologist, and my family priest. My life has been made up of many parts, so my treatment should also be made up of these parts.
My goal for this meeting would be to decide my course of treatment, and how best to live my life. Every person would be assigned a value on their decision, based on how they addressed my questions, and their attitude. If someone disregarded my priest’s opinion, the value of their contributions would fall. In the same manner, if the priest was disdainful about a physician’s ideas, his opinions would matter less. Life, illness, and treatment must all require balance.
This is not just writing an essay for me, this is how I have lived all of my life thus far. Life is short for all, and precious for some. I value what I have had, what I have, and what is yet to come. A diagnosis of mesothelioma is devastating to both the patient and all involved, including the doctors. Nothing should just be accepted with this diagnosis, and everything should be questioned. If you are wondering how life altering this cancer is, please visit www.survivingmesothelioma.com. I believe that if we decide to make a difference in our diagnosis and treatment, we must be informed, and we must speak up and advocate for ourselves.