Bae, Hyeon Jin (Gordon) – Surviving Mesothelioma

Bae, Hyeon Jin (Gordon)

You wait alone in a windowless room too large to be a closet but too small to hold a hospital bed. Fluorescent light glares harshly from above, reflected from bare white walls, but there is nothing to look at but an empty chair across the room which is identical to the one you are sitting on. Outside, you hear busy feet shuffling about, the clanking of heavy trays pushed, paging of doctors, and constantly ringing phones, but no one stops to check on your room. You do not know it yet, but this room is for temporary storage of patients the hospital administrators consider beyond help. After undergoing test after test, you were led in here and told to stay put while the doctors deliberated your “options.” Unable to disobey the authority in their voices, you sit here and look at the seconds ticking by on your watch. After an hour, someone opens the door. He is dressed in the blank white of the walls. He flashes a curt smile, but you can tell by the way he avoids your eyes that the news won’t be good. He begins to explain your test results in scientific terminology that makes no sense, but you eventually realize that he is actually explaining that your case is deemed hopeless, and sentencing you to a slow death.

On October 2001, James “Rhio” O’Connor was diagnosed with mesothelioma, a rare and deadly cancer of the protective lining that covered his internal organs. The tumor was too close to his spine for surgical removal, and mesothelioma is resistant to radiation therapy. Chemotherapy would have extended O’Connor’s life by a few months, but its toxicity would have left him weak and frail. The doctor advised him to take his wife on a cruise, then to return for the chemotherapy, explaining that there was no other option. While most people would have passively followed the doctor’s advice, O’Connor decided to take charge of his own disease. He met with countless doctors, researchers, and patients, and read all the information that he could find in the library and on the internet. After compiling a catalogue of all the possible therapies, he formulated a regimen for himself. He took over 100 supplements a day, followed a strict diet, and practiced mind-body medicine, a way of using thoughts and emotions to heal the body. O’Connor managed to live for another seven and a half years, and published a book called “They Said Months, I Chose Years: A Mesothelioma Survivor’s Story.” He passed away, after having done a great service to other terminal patients, on July 11, 2009.

Most people diagnosed with a terminal illness undergo a series of emotional states called the Kübler-Ross grief cycle. First comes shock, then denial, anger, bargaining, depression, testing, and finally acceptance. In the testing stage, the patient often seeks solutions on his own. In the end, however, he usually accepts the only solution offered by the medical profession: to make peace with himself and prepare for death. They resign themselves to chemotherapy, which will extend their lives by a few months more, but at the cost of their energy and fortitude. Before learning about O’Connor, I would probably have done the same. It is very difficult to challenge a doctor’s prognosis when you yourself know nothing about the disease. However, O’Connor was able to bridge this gap, researching his own cancer and reclaiming the initiative. Inspired by O’Connor’s courage, I will never let another person determine my fate and instead educate myself to make a better decision.

It is often our own ignorance that frightens us and sends us to seek the advice of professionals, knowing that we are not qualified to judge whether a course of action will be beneficial or harmful. But since there is no single definitive treatment for most cancers, doctors and researchers seek solutions from several different angles, and many of their results are available to anyone. There are the traditional practices of surgery followed by chemotherapy and radiation treatment. There are more recently discovered treatments, including anti-angiogenesis, which cuts off blood supply to the tumour, gene therapies that aim to reprogram the mutated DNA sequence in cancerous cells, and immunotherapy, which helps the body’s own defence system to target these cells. There are also many simple natural therapies, such as diet and lifestyle change, and mind-body medicine. Since many of the newer and alternative treatments available are not widely known, if given a dire prognosis and offered no promising treatment, I would follow O’Connor’s example and research all possible treatments myself.

Using PubMed, a database comprised of over 18 million articles from various scientific and medical journals, I will look for therapies with published positive results targeting any that have resulted in the increase of the patient’s lifespan by more than 10% without severe debilitation. After gaining some knowledge about these treatments, I will find specialists who have performed them to discuss what they have observed, details I cannot find in scientific journals. They can tell me about any changes in mood, social behaviour, or diet pattern, and about special cases in which the patient either did not respond at all to the treatment or was completely cured. I will also talk to the patients undergoing these therapies to compare their views with the doctors’ observances. Each time I speak to a different doctor or patient, I will experiment with my own therapy, changing it slightly according to what I had learned. In the end, I will talk to researchers developing new therapies to discover what pathways they are targeting, and try to learn about future possibilities.

O’Connor’s method of research of his disease is not new and many important discoveries have been made by those who persevered in recombining already know facts. In 1953, Watson and Crick discovered DNA, the most important molecule in current biology and genetics, by looking through numerous journals, talking with professionals from a variety of specialties, and reassembling all the separate pieces of known information. Anyone could have accessed the same resources, but since no one else made the effort to think through all the possible structures, Watson and Crick made the discovery. It is even possible that today’s researchers can find a way to completely cure cancer on the basis of what we already know. Thanks to the Internet, all of us have access to an unprecedented wealth of information. O’Connor’s valiant fight against mesothelioma, and his victory over his doctor’s prognosis should inspire every terminal patient to reclaim the responsibility for his own treatment.

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