Lintner, Leslie | Surviving Mesothelioma

Lintner, Leslie

I started thinking about this essay and how I should write it and the first thing I did was head to GOOGLE. I suppose many of the essays written for this scholarship have started in this manner. Really, this is most likely where people start when they are diagnosed with cancer as well. Then I began to think. I have had real experience with cancer in my past. My mother died from melanoma cancer when I was fourteen. I am now 42 so my perspective is a little different, but the experience is still an indelible part of who I am.

Cancer diagnosis changes not only the patient but all those that love and support that patient. We all go through the grieving cycle differently. Each one of us has a story to tell when either we are diagnosed with cancer or someone we love has cancer. It is so easy to sit back and intellectually deal with the idea of survival, however, survival for many of us has a very different meaning. Most of us have a sense of what we mean when we say survive but very few of us know what we need at the very least to survive. Cancer patients are faced with this very dilemma very early in their disease.

So, what do I mean when I say, “What is the very least I need to survive?” For my Mother and her ability to deal with life on a daily basis, she needed to keep her physical beauty. I know that sounds shallow or vain but consider it from her point of view. She had cancer in her sinuses. In order to give her a decent prognosis the surgeons wanted to be able to remove her right maxillary sinus and if need portions of her cheek bone and possibly her right eye. My mother said no. She believed if the cancer had infiltrated to that extent that the surgery would be meaningless and she would die very disfigured. In her mind, surviving with this disfigurement was worse than death.

As a result of her decision, she was forced to find alternatives to radical surgery. She started to research her treatment, however, this was before the Internet so her information was completely dependant upon was what printed and available in libraries and through her physicians. She was also limited by her health care coverage. My father was active military and when she was diagnosed, and she was trapped using the military hospitals and physicians. In some ways this cost her valuable time. She followed their protocols and she participated in a clinical trial for a new treatment for cancer. The Immunotherapy she underwent was probably ill advised, but since she was not able to get appropriate, up-to-date information about her cancer, prognosis and treatment options, she was at the mercy of her health care providers. Immunotherapy was abandoned later that year and it was considered a failure for the treatment of cancer.

My father retired from the military about a year into my mother’s diagnosis. After his retirement, my mother was able to utilize a different healthcare plan that allowed her to move outside of the military hospital and into the world of private medicine. She choose to work with the University of Arizona Cancer Center. They were considered to be on the leading edge of cancer research and treatment at that time. Although my mother had altered her idea of what she needed to survive and asked about her surgical options, she had lost her option for radical surgery. Her phyicians told her that it was too late for surgery. She was now trapped with standard treatment protocol for someone with end stage Melanoma cancer.

She went through numerous phases of chemo-therapy. They used radiation therapy until it was apparent that the cancer had spread to her lymph nodes. She lost her hair and her weight dropped below 100 pounds. She was very sick and the effects of the chemo-therapy was very debilitating not just to her body, but also her spirit. In April of 1979 she stopped all of her treatment and decided she would die with dignity on her own terms. She died July 19, 1979 two years after her initial diagnosis.

As I look back now without all of the emotional turmoil I experienced I know that information is really the key to longevity. Understanding your condition, diagnosis, treatments, medications and tests is crucial in making us all good health care consumers. Most of us trust our health care providers implicitly but we have to remember that they are neither infallible nor perfect. In fact, they are human and subject to the same problems we all have. Unfortunately, no one can possibly value our health, living and quality of life like we do for ourselves! Therefore, we are the only ones really capable of making important medical decisions about ourself and our life. In order to do that effectively, we need to utilize the information that is available to us if we look for it.

I also believe with impunity that we have more control over our prognosis than we believe. Just because a Doctor has given you an expiration date does not mean that you need to accept that. I would like to say that I personally know this to be true but I can’t. I believe with all my heart however, that if I am faced with a similar diagnosis that my mother received, I will not accept an arbitrary prognosis. There are just too many examples of people overcoming and surviving against all odds in the face of overwhelming medical evidence. I believe that there are alternative therapies that have merit and I believe we should exercise our ability to think. We can be informed and knowledgeable about our condition, and in fact, it is possible to be as knowledgeable or even more knowledgeable than our physician about our own bodies, disease and prognosis.

To follow “Rhio” O’Connor’s example and become a partner with our physician is not only prudent but necessary to help ensure a positive outcome. I believe that his example is a inspiration to all of us who have personally faced cancer, or know someone who has cancer. His message is to never give up and “know thyself” to coin an old wise proverbial expression. It sounds simple enough but, “A man is too apt to forget that in this world he cannot have everything. A choice is all that is left to him” (Carl W. Buechner.)

For more information about RHio O’Connor, his story and cancer please visit https://survivingmesothelioma.com/.

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