Katzen, Joanna – Surviving Mesothelioma

Katzen, Joanna

James Rhio O’Connor was a medical enigma. In October 2001, at the age of sixty-one, he was diagnosed with malignant pleural mesothelioma, a nasty, aggressive cancer caused by exposure to asbestos years before. Although his doctors estimated that he had less than a year to live, he survived for seven and a half. From what I can gather, his quality of life during those years was not shabby.

How exactly did he accomplish this? Simply put, he set out to learn everything he could about this horrible disease and any and all possibilities of treating it. He considered conventional treatments but because his doctors had explained that these treatments would do little to help and most likely, would decimate any quality of life during the short time he was expected to live, he decided against them. When he found multiple anecdotes and case studies showing that there were things he could do to enable his body to deal with the cancer and possibly even cure it, he became thoroughly and completely devoted to doing so, and set out on an alternative path of treatment. He worked tirelessly with various alternative clinicians to create a customized program of treatment designed to increase his body’s ability to stave off both disease and symptoms. This involved making huge life-style changes while in his sixties, something that most people are reluctant to do at any age. Today, performing an Internet search for his name returns multiple articles detailing almost every step he took.

This is what Rhio did for himself. What he did for others was to write the inspirational book, They Said Months, I Chose Years: A Mesothelioma Survivor’s Story, which explains in depth what he did to live his life with “Mr. Meso,” as he called his disease. Not only does his book provide inspiration and hope, but it also shows us that there may be ways to manage cancer other than chemotherapy, radiation and surgery. Each year, thousands of pleural mesothelioma victims are diagnosed. Thousands more are diagnosed with other serious or terminal illnesses every day. Most patients surrender to the prognosis, opinions and advice of conventional doctors, accepting their statements as fact—something that is as “is” as words that have been carved in the stone of destiny. Do we do this out of a feeling of hopelessness? Of a desire to have someone take care of us, to make everything all better? Do we do it because of our tendency to deify doctors, to relate to them as all-knowing, medical gods? Or do we do it because most doctors seem unwilling to let us have a hand in determining our own course of treatment? Perhaps a better, more important question is, to what extent is our health in our own hands?

They say that knowledge is power. Where health is concerned, certainly knowledge can be empowering. Regarding exposure to harmful substances, knowledge can be much more than empowering: It can be preemptive. After all, who among us would ever, in a million years, choose to expose ourselves to thalidomide, DES or asbestos, knowing what we know today?

Our generation is luckier than ever in that we live in an age of electronic information that puts the work of others at our fingertips. Even those who don’t own a computer or have access to the Internet at home can go to their local library to view the latest research data and learn about almost any topic. The upper limits of current research and our own ability to understand, assimilate and utilize the information are our only limitations. We are no longer limited to books or research data that take time to be published. Today, once things are discovered and written papers accepted, world-wide access is enabled within minutes.

Why, then, is it that most people never research their own illnesses, investigate their possible treatments, or take the upper hand by making informed decisions about their own medical care? Definitely, when one is ill or weak, it is very difficult to take on any challenge full force—it’s a time when one is physically and emotionally drained. In the case of a potentially fatal disease such as cancer, perhaps there’s also a fear of making the wrong decision. Or maybe it’s just that we don’t know that the option exists. That’s where the example of others such as James Rhio O’Connor becomes essential.

I am a cancer survivor. When the oncologist who was assigned to me through my HMO told me that the oncology department was considering two different approaches to my treatment, I asked a few questions and then went home to think. At my next appointment, she informed me of their decision. I didn’t really agree with it, but when I asked her why that decision had been made, she only said in a thick, Russian accent, “Is protocol.” “Protocol?” I said. “What does that mean?” She just repeated, “IT IS PROTOCOL!” I understood by her tone and her narrowed eyes that I was annoying her. I argued with her and to this day, I’m not sure why. Maybe I just needed to feel involved in the decision process. Maybe I was just angry. The end result was that she got me an appointment with the department head. I sat in on the next department meeting and, after some back and forth, they agreed to provide the course of treatment I preferred.

Seeing as how I’m a fifteen-year survivor, I can say that, in the long run, it did turn out well. But was it an informed choice? I think it was an emotional choice. Wise, perhaps, but emotional.

You see, at that time, I had neither the inspiration nor the example of an ardent, driven force like Rhio. Had I been able to read about him then—or better yet, had I read about him before my diagnosis, I would have been aware of the resources available in the fields of alternative medicine, and of the possibilities of working together with both alternative practitioners and conventional doctors to take a more informed and proactive approach to my own treatment. Perhaps it would have even made the whole thing a lot easier on myself and on my family. Knowing what I now do, I consider Rhio’s book to be recommended reading for everyone, whether healthy or ill.

The James “Rhio” O’Connor Memorial Scholarship Essay Contest is a brilliant stroke of genius. It creates an instant incentive for people to write not only about the type of heroism in the face of devastating circumstances that can be found within any one of us, but also about mesothelioma and the devastating affects of asbestos exposure. Indeed, Rhio’s story has far-reaching implications regarding life-style choices and exposure to all unhealthy substances, making us think twice about anything we work with, use or put into our bodies. But the main stroke of genius in this whole thing is making public posting of each essay on the Internet a requirement of submission—what better way to increase the number of people who will read about and, ultimately, be inspired by Rhio’s actions? Learning about what he did enables us to understand what we can do. James Rhio O’Connor’s story shows us all that we, too, can change our fate, take an active hand in our own treatment when needed and, most of all, become an inspiraton to so very many others in the process.

Additionally, the potential for the application of Rhio’s work to the lives of healthy people is astounding. We can all do what he did even before illness sets in! We can research, learn and employ the knowledge we gain to be healthy, stay healthy and reduce, if not eliminate, our exposure to potentially harmful substances and behavior. I hope that I will never again have to experience the emotional roller-coaster of a dire diagnosis. But due to my participation in this essay/scholarship contest, I know that if I or anyone with whom I have contact does, my approach will be very different from what it was in the past. I will definitely follow Rhio’s example and use every resource available to increase my knowledge and decision-making ability including the Internet, medical libraries, social networks, support groups, and if at all possible, other patients. I will weigh the pros and cons of all treatments so that I will be able to make an intelligent, informed decision and, without hesitation, I will seek out dotors and clinicians who will work together with me as willing partners.

Rhio’s prognosis was inaccurate because his doctors failed to take his tenacity, intelligence and drive into consideration. Perhaps it would have been accurate for most, but Rhio’s determination, action and hands-on approach made him very special and because of this, he beat all the odds. Make his way your way, regardless of your health situation today. I know I have.

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