James O’ Conner is an inspiration to many cancer patients. When doctors only gave him a year to live, he was determined to prove them wrong. He would do so not by sitting back in his chair, but by taking action to improve the quality of his life. He looked for treatment beyond chemotherapy and radiation which doctors said would be of little beneficial effect. Consequently, James was able to live well beyond his one year life expectancy and enjoyed life’s simple pleasures for another six years. James O’ Conner showed me how very important it is for a person diagnosed with cancer must be his/her own health care advocate in order to get the most out of life. (www.survivingmesothelioma.com)
James O’ Conner and I are similar in that we both faced challenges regarding our health. At the age of fifty- two he was diagnosed with Mesothelioma a cancer which covers the lung and/or lining of the pleural and abdominal cavities. Unfortunately, by the time James was diagnosed his tumors were advanced and were great in number. James life was turned upside down and doctors gave him little hope. I too have felt like that, because weeks before my sixteenth birthday I was diagnosed with Ewing Sarcoma. Unlike James, I did not have to make the tough decisions on my own. I was a child at the time, so like any other child I relied on my parents to make my health care choices. James’ story got me thinking that if I relapsed, I now would have to be my own advocate on these monumental life choices. I realized that I needed to know more about my own cancer. What would I do if I was not satisfied with what the doctor told me? Who would I turn to for advice?
In order to make the right choice when faced with any difficult decision, one must do research. I decided to search the internet to find out all I could about Ewing Sarcoma. With helpful websites like www.ucsfchildrenshospital.org and www.cancer.gov/, I learned that Ewing Sarcoma is a cancer that occurs primarily in the bone or soft tissue. It is the second most common malignant tumor in adolescents ages ten to twenty, and about 250 teens are diagnosed with Ewing Sarcoma in the United States each year. I also learned that medical researchers have yet to fully understand the causes of it, but know that eighty-five percent of cases have to do with the fusing of chromosomes eleven and twenty-two.
When I first was diagnosed with Ewing Sarcoma I had surgery to remove the tumor and chemotherapy to take care of any remaining cancer cells. After my research into Ewing Sarcoma I learned there are alternative ways to treat it. Besides surgery and chemotherapy, radiation, stem cell transplant, and rehabilitation are approved Ewing Sarcoma treatments. As I was looking though different websites, I came across a story that really grabbed me. A mother posted a story about her daughter having had Ewing Sarcoma and her story not only shocked me but also reassured me that one should not settle with just what one doctor says. She posted that after six rounds of chemo, the doctor informed her daughter that he would have to do surgery. Later, she was told that after her Daughter’s surgery she would not have the use of her arm anymore. Not being one to take this information lightly, she went on to do her own research and found hope in the work of Dr. James Wittig. He is one of nine doctors that do a rare surgery which involves actually trying to rehabilitate the site where the cancer was removed and rebuilding it as long as the cancer is not in the muscle. Because of her mother’s willingness to take charge and find a solution, her daughter now can pick up both her babies at the same time!
Patients should also realize that when one is in remission it does not mean the struggle is over. One still needs to make frequent visits to his or her oncologist. The remission process is set into place to ensure that in the unfortunate chance of a relapse there is immediate action. For example, even though I am in remission, I still have to see my oncologist every three months. I have to go to the hospital for things like CAT scans, MRI scans and CBCs, which is a blood test that measures healthy blood cell count. They do all these scans and tests to look for any abnormities in my body. I know I must be constantly vigilant in taking care of my health as my own best advocate in this remission period.
One day a good friend of mine asked me if I had to go though this again could I do it. At first I hesitated to answer because I felt uncomfortable explaining to her that I do not believe it is any one persons decision whether they should just call it quits. That type of decision affects my whole family. My family put their lives on hold to be there for me, so the least I can do is factor them in my decision making. I was very lucky for my situation being as good as it was.Many patients are prescribed antidepressants to cope with all that has happen to them. For me the antidepressant didn’t come in the form of a pill ,but instead was in the form of love that I received from my family and friends. Most night my dad stayed with me in the hospital, and the times that he couldn’t my brothers would be there. When I felt the lowest my dad would find things to keep me occupied. For example, one time we had a water gun fight using needle syringes because I couldn’t stand to watch anymore television. When I lost my hair my brothers gave me a pair of sunglasses, they said “Put them on, so you can look like Vin Diesel in the movie Pitch Black.” From that day I couldn’t look at myself in the mirror with out bursting in to laughter. Even though what I faced was difficult and at times challenging, I can not say it was all bad. I grew up more in one year than I had throughout all my teen years and I don’t think I would be as well rounded as I am today if I had not experienced what I had.
Cancer is unpleasant. Both James and I can attest to that fact. From a larger perspective, however, such an experience forces one to question the very meaning of life. My trial has taught me three important lessons.
1.) To realize that big things are big and small things are small;
2.) To see things in the light of eternity and act accordingly; and
3.) to laugh at the inevitable and even smile at looming death
( see Story of Philosophy, Durant)
Although I am unprepared to send the Sphinx into the Abyss, I am happy.
By: Gombos, Kristine