Letter from meso warrior, Jocelyn Farrar
If you have received this letter you have been somehow touched by the tragedy of mesothelioma. Perhaps you have lost a friend or loved one to the disease. Or, perhaps you are a health care provider who provides dedicated and compassionate care to those who are experiencing this rare but aggressive form of cancer. Perhaps you are involved in the fields of law or policy and relentlessly represent the interests of meso patients. It could be that you are a researcher, desperately trying to find a cure to this dreaded disease so that more will live. Or perhaps you are like me, a meso patient who is on a mission to prevent the disease from ending my life.
The story of my journey might be familiar to many of you. In May 2008, I was a healthy and physically fit 56 year-old nurse practitioner who had just achieved a lifelong goal of earning a doctorate in nursing. At some point near the end of my last semester of school, I developed an annoying dry cough that did not respond to the usual antibiotic therapy. Two weeks after graduation I decided to have my condition evaluated one more time. I was stunned to discover that what I had assumed was a minor cough was actually due to an accumulation of a large amount of fluid in my right chest. Further studies revealed the diagnosis of pleural mesothelioma.
How did I come to develop this disease? As a child, I lived in my grandparents home. My grandfather, a pipefitter, carried asbestos fibers home on his clothing. I have come to learn that this route of exposure is common to the wives, children and grandchildren of those working with asbestos.
Admittedly, I have had many, many years of schooling but not once was this disease discussed in my training. I had never cared for a patient with the disease nor had I ever met anyone who had had the disease. I clearly needed more information to prepare for the battle ahead. I searched the medical literature and discovered a newly published article on the disease. The first sentence of the article read, “Mesothelioma is a universally lethal disease”. That sentence haunts me to this day.
My continued search for information led me to the internet. I found that many of the mesothelioma websites did not provide credible medical information. By chance, I came upon the website for the Mesothelioma Applied Research Foundation. I typed in my contact information, doubting that I would ever hear from the organization. To my surprise, within five minutes my cell phone was ringing and Mary Hesdorffer, the nurse practitioner Medical Liaison was on the line. She assured me that she knew about my condition, understood my feelings of isolation and vulnerability, and knew exactly what to do to help me find the optimum treatment options. Mary and the Foundation literally became my lifeline!
Mary helped me understand my treatment options and affirmed for me that the health care team I had chosen were experts in the field of mesothelioma. She discussed the latest standards of therapy and the clinical trials that were showing promising results. She directed me to medical literature, an online community, videos of presentations by mesothelioma experts and other educational resources on the Foundation website at www.curemeso.org. For the first time, I was able to approach this disease with a sense of hope, confidence and power.
More importantly, I learned about Foundation funded research – the key to saving my life and the lives of all meso patients. I learned that researchers were actively seeking a cure for this disease through the development of unique, cutting edge therapies that target and destroy the meso cells while leaving normal cells healthy. I learned of researchers who were attempting to discover therapies to keep the disease at bay and buy patients the precious time needed until a cure could be found.
I also discovered that despite the talents and passion of the researchers, this dynamic search for a cure was being threatened by a lack of funding to support ongoing research. How sad to think that the key to saving the lives of meso patients might never be found because of something as simple as inadequate funds for research. And this, my friend, is where you and I come in.
We are desperately in need of research advancements. The Mesothelioma Applied Research Foundation funds multiple grants each year that allow researchers to continue their work to advance mesothelioma treatments. These grants exist because of people like you, who are willing to make a donation that will ultimately lead to a cure to this tragic disease.
I speak for all meso patients when I say that our lives depend on your generosity. I am personally asking you to join me in making a donation to the Meso Foundation today, and to keep donating until the medical articles on mesothelioma read “Mesothelioma is a highly curable disease”.
My sincere thanks,
Dr. Jocelyn Farrar