No one ever wants to hear the phrase “get your affairs in order”, so when one does, the reaction of shock and devastation is understandable. James “Rhio” O’Connor is a man that had been given a year to live when he was diagnosed with pleural mesothelioma but never gave up fighting. Instead of allowing discouragement and fear define him, he proved that hearing the cliché phrase is not the end, and outlived his prognosis by more than six years.
Pleural mesothelioma is a rare type of cancer that forms in the tissues surrounding the lungs and is caused primarily due to exposure to asbestos. Typically the treatments include surgery, chemotherapy, radiation therapy, clinical trial participation, and various forms of alternative medicine (Mayo Clinic, 2009). In O’Connor’s case, “Surgery was not possible because of the position of the tumor near his spine and chemotherapy would decrease his quality of life and not significantly improve his length of life” (Kraus, 2009).
After the diagnosis, O’Connor became his own advocate by extensively researching his diagnosis, collaborating with countless doctors, researchers and patients, and fully utilizing the right to informed consent. His optimism and belief system provided him with the strength to make the tough choices and push through. With diet, faith, and perseverance O’Connor created his own therapeutic protocol that ultimately let him defeat the odds and become a hero to many.
Sadly, with all the funding, research and development, the world is still plagued with terminal cancer. Like many, I have personally been linked to the disease. In 2007 my father passed away after a very quick struggle with Glioblastoma Multiforme, the most aggressive form of a brain tumor. Because of the short prognosis, my father made the decision with our family to participate in a clinical study at the Tufts New England Medical Hospital. By doing this my father was put thru a series of invasive procedures, grueling side effects of medication, and spent six of his seven months to live in hospitals and rehabilitation facilities, rather than at home with his family.
If I was faced with a dire cancer prognosis I would like to say that I would immediately seek information on clinical trials of which I would qualify to participate in, because ideally I would like to be able to be a considered a hero that helped in finding more effective treatments of cancer down the road, or even a cure. However, as a single mother I would like to take a route similar to James “Rhio” O’Conner and seek alternative treatment rather than strictly allopathic, as long as my cognitive state is not significantly implicated. Although there is no current data that proves alternative treatments have an impact on the cancer itself, it can help ease symptoms and improve the quality of life that still remains available to myself, my family and my friends.
My father always used to tell me “don’t bite off your nose to spite your face”, and I feel this is a phrase I would have to live by once I have been diagnosed. With that said, if I am given a dire prognosis I do not wish to be in and out of the hospital for invasive procedures and treatments that will not cure the disease or add significant life expectancy to my current prognosis. Instead I would like to spend my time by learning everything I can about the disease I am facing, build a strong support network including not only my family and friends but also support groups, and begin to make the final arrangements for my family once I pass, so they are not burdened with additional stresses of my finances or properties.
When on the journey of learning the ins and outs of my prognosis, I think it is important to keep in mind that the treatment and prognosis are not the whole story. There are many treatment options and complimentary therapies available to patients such as surgery, radiation, chemotherapy, biological therapy, holistic therapy, nutrition therapy, and the list goes on based on the individuals’ outlook and personal beliefs. As an individual faced with a very frightening outlook, I would want to exercise my right to informed consent. Although some of the knowledge I gain may not be positive, it is my impression that you cannot fight a battle if you have one hand tied behind your back. It is important to know every option available as well as my practitioners’ advice for best course of treatment is in regards to surgery, medication, therapy and lifestyle is not only my right, but my responsibility to myself.
When building a strong support network among friends and family, it is important to be clear about and emphasize what my wishes are, because emotional and spiritual health, as well as physical health, have a strong influence on the overall outcome of my well being and the support that others are able to provide me. Despite how clear and upfront I am with friends and family, I know from my father’s battle that I need to be prepared for changes within my personal relationships. Studies show that friends and family may begin to withdraw from personal relationships for reasons such as not knowing what to say, or how to help, or in contrast, some might become overly involved in my treatment path. I hope that by being open and upfront, I will be supported to continue my life as normal as possible, as well as have encouragement from friends and family both emotionally and socially.
I would also seek support from people who do not just know me as being sick, but as someone who has similar struggles. One way to do this is by joining a support group for cancer patients, whether through the hospital program, the American Cancer Society, or even a local church. Having people who have experienced or are currently experiencing a similar situation could be very beneficial and therapeutic, or even encouraging. If I am healthy enough, I would like to imagine I would continue with my volunteer work with organizations that assist in the funding of cancer research and treatment. After experiencing my father’s very quick demise, I have come to understand what it involves to make final arrangements, as well as the stresses that it forces on the family members. Regardless of the emotional and physical struggles, t is important to have a prepared plan. I want to make sure my will is current, depending on the age of my child, custody may need to be resolved, finances and insurance policies will need to be disclosed, and in my case, my preference of my ‘final resting place’ would need to be expressed.
Lastly, and to me, most importantly, I would live my life to the fullest while I am still capable. As James “Rhio” O’Connor stated “You have to possess the faith and confidence to make the right treatment decisions”. To me this interprets as be your own advocate about your disease, and believe in something more than just the medicine. By having faith and confidence we are able to take each day as it comes, without counting down the days.