Without warning, as often happens with cancer patients and their caregivers, everything in my life “changed on a dime.” It’s appropriate then, for my 1st entry into the Phoenix Cancer Support Network monthly blog, to give a short accounting as to how I became involved with this wonderful organization.
As a practicing gastroenterologist in the community, cancer screening, diagnosis and treatment was always a significant part of my day-to-day activities. Yet, even as a physician, I had very little insight into the issues and difficulties encountered by patients trying to navigate this unfamiliar and tortuous journey.
Then, 13 years ago my youngest daughter, Annie, away at college at the University of Arizona, began to complain of pain in her left leg. As there was a long history of low back problems in my family, we were concerned, but not overly alarmed, and accepted the pronouncement of the University Student Clinic that this was musculoskeletal and needed treatment with physical therapy and nonsteroidal anti-inflammatory drugs.
After this had continued for several weeks without relief, when the spring term ended, and she returned to Wisconsin, and ultimately, to summer camp counseling in North Carolina, I insisted that she first have an MRI of her low back. This was done at my hospital by a radiologist that I have known for 25 years and when the films were processed, we reviewed them together. We could see that the low back was normal but that there was “something unusual” in her left pelvic area.
From this point on, her life and those of our entire family were forever altered.
Even as a physician, familiar with medical practice, terminology and with the doctors, in a personal way, each step of the process of staging her disease, identifying its character and planning and executing a treatment plan were rife with road blocks, difficulties and missteps. Once treatment had begun, the process of juggling my work life, my daughter’s treatment, much of which was inpatient, and caring for my wife and other two children’s physical and emotional needs was extremely daunting and, at times, seemed impossible. We had no advisors, care managers or navigators to assist us. Mistake after mistake was made until we finally learned that we had to advocate for ourselves. There was no one out there to advise or lead us as we muddled, somehow, through the cancer maze.
Years later, after she had passed, we had to deal with the process of grief which has been ongoing now for the past 13 years.
I felt almost compelled to change my practice character, moving out of private gastroenterology practice in Milwaukee and joining the Cancer Treatment Centers of America in Goodyear, Arizona, devoting my career, perspiration and dedication to improving the lives of cancer patients on their own journeys.
When I was approached by my eldest daughter, Jeanette Martin, with her idea to create a nonprofit organization dedicated to easing the burden of the cancer journey, I was instantly enamored with the idea of helping relieve some of the very problems that my own family had encountered years before.
As PCSN approaches its first year of existence, I hear and see the relief from our clients own fears, concerns and worries as we offer and deliver the very kind of assistance that was absent for us and for Annie.
I question whether there is a greater calling or service that I ever would have been able to encounter or deliver and it has been my great privilege to participate with our wonderful CEO, my own daughter, the other incredible board members and voluntary staff that have miraculously appeared to fill this gap in patient care.
My heart filled thanks goes out to Jenny Martin, Nancy Weber, Fred and Andrea Dias, Gary and Susy Sennett, Rob and Dom Wascher, Raphael Sheffield, Julie Xander and Marcy Laront for their dedication, enthusiasm and hard work.
May the work continue! May our clients prosper and survive! May cancer be eradicated from our world!