“I have cancer, cancer doesn’t have me”
Mesothelioma (cancer of the delicate lubricating sac which surrounds organs such as the lungs, abdominal organs and heart) is a disease in which cells of the mesothelium become abnormal and divide without control or order. They can invade and damage nearby tissues and organs. Cancer cells can also travel from their original site to other parts of the body. The major risk factor is unprotected contact with asbestos. ( https://survivingmesothelioma.com ). James “Rhio” O’Connor was a very brave person because he forged his own path in the face of a horrendous mesothelioma diagnosis, and kept significant control by doing research and empowering himself with knowledge and choices in his treatment. Mr. O’Connor may have met resistance, as many specialist physicians are not used to patients discussing what they’d like included in the treatment, nor are they used to patients who are well educated about their diagnosis. Usually these specialists are looked at on a pedestal as the patient’s only hope. Mr. O’Connor was breaking ground for other patients to also keep as much control and involvement in their illnesses and treatments. Despite the sad loss of Mr. O’Connor, I feel his illness was not for nothing because the legacy of his reaction and bravery is an inspiration for countless others in similar situations. He inspired me when I was doing research of my own.
When I was 18, I was diagnosed with a rare cancer called carcinoid, which appeared in my ovary. This cancer reappeared again in 2001. I was originally told it was benign, but I wanted to learn more about it so did internet based research. During that research I came across a brief story about Mr. O’Connor and his extraordinary survival, as well as his personal involvement in the treatment process. Reading about him and a few others, I was validated to continue researching and advocating which eventually made a huge difference. By 2007 I’d had 6 tumors removed and was tired of the merry-go-round of diagnostic tests, hospitalizations, surgeries, chemotherapies, multiple medications, and more diagnostic tests. My last tumor was removed 12/12/07 and I am in remission. Doctors were resistant to using alternative treatment methods and I believe this is what caused recurrent tumors and dragged out my cancer battle for eight years. During the last two years, I stopped seeing doctors almost completely and designed my own treatment only going to doctors for scans and examinations to determine response to my interventions.
In 2007 my right leg was completely paralyzed and had no feeling except constant burning pain due to a tumor that damaged the sciatic nerve. The surgeon who removed the tumor said, “I saved your life, a leg is a small price to pay.” This was my final straw which led me to mostly take over most of my treatment plan. I was a competitive half marathoner and had run all my life. My leg was not a small price to pay. I coached my kids’ soccer teams. The thought of not being able to walk and run was extremely depressing. Depression and hopelessness can lead to giving up the cancer fight. Doctors need to understand that for many patients quality of life is of the utmost importance and these physicians should not be disconnected from what matters to their patients. By becoming the decision maker in my treatment I took back control in my life. I spoke honestly with my physicians, taking my voice back. I went to a support group, kept a journal and saw a therapist who specialized in chronic illness. I watched funny movies, read books I’d put off, sang at the top of my lungs, and enjoyed my family and friends to the fullest. I stopped letting crutches keep me locked in my home, returned to the beach which I dearly love, and rode a Boogie Board through the whitewash despite having a central line IV called a PICC. I returned to my place of worship and volunteered in various organizations such as Everyone A Reader at my kids’ school. I insisted physicians read certain articles and give certain treatments. If they did not, I changed physicians until I found one that believed in patient involvement.I approached my leg from a coaching and physical therapy perspective along with nutrition, positive thinking and visualization exercises. It took over one year, but I regained approximately 85% of feeling in my leg, 90% use, and decreased pain from a level 9 to a 4 on the 0-10 scale which I was told would never happen. I stopped allowing the illness medical system to paralyze ME. I continue to make progress and recently started to jog again. I am confident that I will fulfill a lifelong goal to run a full marathon someday. I have periodic scans, howeverthere have been no further tumors since 2007.
I was told too many times to count that I was going to die. Now I am a full time student pursuing my Pediatric Nurse Practitioner so that I can work with children fighting cancer. If I am able to fund my education to continue full time, I will reach this goal in 2013. I believe that my attitude of respecting patient’s wishes and needs as well as my experiences with cancer and as having been an un-heard patient will make me a very sensitive practitioner, and that my dedication as a student and previous experience as an excellent pediatric Registered Nurse will make me a superior Nurse Practitioner. I am also a mother of four children, ages 24, 22, 17 and nearly 13 and because my kids have had various illnesses and injuries including a traumatic brain injury, I understand what it is to watch your child suffer. I applied the same principals to my sons’ treatment and his only permanent damage is some change in his eyesight. I would be extremely supportive and sensitive to the feelings of the people who love the ill child. When the loved ones are coping well, it positively impacts the patient.
It is critical that a patient be viewed not as a diagnosis but a person. Finding out what is important to that person can be used in the treatment process. Life should be kept as normal and upbeat as possible. Negativity affects immune response. I believe in something called the “mind-body connection”. “Following your bliss” whether sick or well helps not only with state of mind, but with the immune system. Stress is constantly implicated in diseases and while it cannot be fully avoided, it can be consciously limited. Many say laughter is the best medicine. Choosing life, and to resist a disease goes a long way. Patients who believe they will lose the battle, often do die. When I was ill, I had a saying, “I have cancer, cancer doesn’t have me.” It’s important that the patient believe they have at least some control. Using personal power to be involved with medical professionals rather than being the “good, compliant patient” and surrendering to whatever others think is best is necessary for understanding and impacting the diagnosis and treatment plan. Personal involvement gives the patient a sense of control over something that is seen as uncontrollable. The patient has the right to not only refuse any part of a treatment regime they do not want, but to ask for specific treatment to be included. Not all physicians will agree, but it is always a possibility to find another who will. I also believe that whatever the MD orders as treatment should be covered by insurance. As much treatment as possible should be done in the environment the patient feels most comfortable and safe in. Some may want to be in a hospital, others at home, or with family and friends. Treatment should be made as portable as possible. When patients are confined to hospitals for long periods outcomes are much worse than when at home. Hospitals are noisy, sleep is interrupted, people can be very impersonal, the patient is separated from the familiar and comfortable just to consider a few issues. Some providers don’t want to give the locus of control to the patient and feel they cannot adequately supervise care outside of the hospital. Using nurses in external environments mediates the desire of the physician to keep the patient safe and well cared for and the patients’ valid need to be in the environment of their choice. Removing the patient from the treatment process objectifies them which negatively impacts outcome. The cancer patient has a right to fight their disease in any and every manner in which they believe they can derive benefit and success. To say otherwise is to take away their right to life, and control over that life and illness, as well as to disrespect the patient. I feel this does harm and violates oaths of physicians and nurses.
By: Luria, Chana