Ubalde, Jamie – Surviving Mesothelioma

Ubalde, Jamie

James “Rhio” O’Connor is an inspiration to many. He defied the odds as he fought a long battle with cancer that lasted for 6 years longer than his prognosis. He was diagnosed with the deadly cancer mesothelioma, a rare form of cancer that develops from the protective lining that covers many of the body’s internal organs. Spending hours in libraries and communicating with professionals, he learned about the many varieties of therapies offered, their short and long term side effects, and the theories and philosophies behind them. He was able to create his own therapeutic protocol with the help of clinicians that he selected himself. James’ refusal to give up enabled him to survive for so long.

If I was diagnosed with cancer, I would be devastated. In private, I would be angry at the world as well as in denial. The reality that I could never reach my dreams and aspirations in life would bring me to a loss. In time, my priorities in life would be reevaluated and I would have to put my education on hold. My family’s happiness would be my main reason for living and I would try to show them how much I love them every chance that I could. I would view every waking moment in a new light; I would recognize the miracles in all living things.

Treatment wise I would still try chemo, radiation and surgery even if they had little to offer. I would not want to leave any stone unturned. My acquired knowledge as a music therapy major would lead me to seek music therapy as my adjunct treatment of choice. It would be the perfect form of treatment for me because it would not only cover my needs but also the needs of my family. The first time I heard about music therapy I was a freshman in high school. I never really considered it seriously as a career path until my junior year, the year when I decided to trade in my dream of becoming a concert violinist for the life of a music therapist. It was also the year my childhood friend passed away from cancer. I met her in the 4th grade (her parents have asked me to keep her anonymous); and she was sick for as long I had known her. Whenever I feel overwhelmed or engulfed in self-doubt I remember how she was able to do what she loved despite her illness. She was the most selfless person yet she fought for survival every day. When I feel like things are going wrong in life, I just remember that there are people like her who are grateful for each miraculous moment. Because of her I entered college as a music therapy major in hopes of one day working in pediatric oncology.

Music therapy cannot cure cancer but it is effective in helping patients and their families to cope with the challenges they are forced to face. Patients with cancer constantly contemplate death and are placed in they are placed in hospitals which are unfamiliar environments that separate them from their homes, families, friends, schools, and daily routine. They are often in denial or are anxious because they cannot express their feelings. Furthermore, restrictions are created that can bring about feelings of vulnerability, anxiety, and the resurfacing of emotional difficulties.

Even though patients are different ages, come from different background and cultures, and have different diagnosis those who undergo music therapy all use music as a medium to convey their thoughts and feelings. They are able to relate their stories through their songs and tell us in a deep way what it’s like to hurt or want to go home. Through music they are able to voice their pain, fears, anger, love and courage. In addition, music therapy is shown to be more effective in stimulating verbalization of hospital experiences, resolving anxiety and fear-provoking fantasies, and aiding more positive affect than other therapies.

A music therapist works to: provide a normalized environment; promote self-expression, release tensions, and initiate group interactions. Music therapists also work towards helping a patient create a positive perception of death. It is an ideal treatment for cancer patients because constant changes in a patient’s health enforce a need for treatment that is flexible and adaptable. Music therapy sessions are based upon the interests, capabilities, and most immediate need of the patient and family members at the time of the session rather than a pre-determined treatment plan

Music therapy can also be beneficial during the different phases of treatment. During chemotherapy, healthy cells are destroyed when cytotoxic, or cell killing drugs are used. Furthermore, chemotherapy can bring about physical pain and changes that can bring about behavioral issues. However music listening or music and imagery can reduce nausea and emesis, while familiar songs have been found to increase communication during treatment.

During the bone marrow transplantation a patient may become neutropenic, which is a blood condition characterized by the virtual absence of neutrophils. Because of this patients may be placed in isolation for 2 to 3 days and are not allowed out of their rooms. This leads to a decrease of social contacts, lack of stimulation, and physical activities, which can bring about feelings of loneliness, depression, rejection, anger, and confusion. In this phase of treatment, music therapy can provide the patient with purposeful activity, pleasure, and creative expression whilst in confinement. Additionally, nonverbal music has been found to increase participation in isolation while methods that include direction, guided imagery, visualization, and biofeedback can reduce trauma.

Music therapy is a great form of treatment for cancer patients because sessions allow families to say goodbye. In other words, therapeutic sessions can be seen as the parent’s last loving acts towards their child. Once cures have been abandoned, the therapist works towards the relief of physical and emotional pain, and the social and spiritual distress of families and the patient.

Other than therapeutic treatments I would seek emotional strength after my diagnosis. I would turn to my religion as well as outreach groups for teens with cancer. I am a Christian who is strong in her Faith and proud to admit it. My friend who passed away from cancer told me once that she found that hearing or reading about other patient’s stories helped her and inspired her to keep fighting. I would also constantly seek advice from friends in the medical field and read on the many different cancer treatments available. I would read many medical journals and articles about treatments for cancer and take note of the success stories that I hear from other patient’s stories. Personally, I have always had a horrible perception of death so I would try to communicate my feelings more and by networking with others I hope to become at peace with my diagnosis. For as long as my health would allow me, I would constantly speak at events, attend conferences, fundraise for a cure, and constantly share my story.

My greatest source of emotional support would no doubt come from my family and friends. In this time of illness, my family’s happiness and creating memories with them would be my greatest priority. As I considered what I would do if I had a terminal illness, I thought: skydiving, bungee jumping, traveling around the world. But then I realized, once I’m gone would those activities really matter? Personally, my greatest motivation for fighting my illness would be my families’ well-being. I know that my illness could potentially cause my family to fall apart and I could never pass peacefully if I knew that I would be leaving them broken. I would not be worried about leaving this life, but I would be afraid of what would happen to those that I leave behind. I would want to spend as much time with them and love them unconditionally as long as I could. When I am gone I would want them to remember me as a daughter, sister, cousin, and friend that loved them more than anything in this world and who held on as long as she could just for them.

When I pass away I want my family to feel peace instead of sadness during this bittersweet event. I want them to live on, happily knowing that we would surely all be reunited one day. I know they would be heartbroken, but in time, when they look back, I want them to be able to remember the angels all around them. Angels who comforted them and whispered beautiful words of love into their souls; letting them know that everything would be alright. I want them to know that I had served an amazing life on earth and that they had given me more love than most people ever received in a lifetime. I would want them to realize that in my passing I had finally won my battle, and I was healed.

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