On November 24, 2014, I was diagnosed with a central nervous system lymphoma brain tumor. Having no symptoms leading up to this diagnosis, I was shocked to learn my fate. After a year of strong chemo and close contract with my hematologist/oncologist, I was told that I was lucky as I was in remission – but that my tumor could re-occur so I would need to get regular MRIs over the next five years to ‘catch’ a re-occurrence early.
I am lucky, to be alive today as I was very sick and almost died as a result of the brain tumor as it was not operable and was located in my brainstem. I do not remember a lot of the early days of my cancer journey and rely on my husband to fill in the blanks when I have questions. Today, I know it takes more than luck to fight cancer and come out on the other side. Here are some examples.
I was told I was lucky to be treated in a well-respected cancer center where I was diagnosed and treated by experts. Yet, in reality, I would not have gotten to that hospital if it were not for two friends – one a nurse case manager and another who is a social worker working in the practice of patient advocacy. When they heard I was sick, they came to see me and recognized I was not in the right hospital for my diagnosis. They talked to my husband and asked if they could do some research to see if they could get me moved to a more appropriate facility. They both got to work and together decided on a plan of action. They both called their contacts and found a neurosurgeon at the University of Miami who agreed to accept my case. I was discharged from the small community hospital and seen by the neurosurgeon a few days later. I was examined, admitted and scheduled for a biopsy to determine the type of tumor that I had. Once the tumor type was known, the neurosurgeon referred me to a hematologist who specialized in the type of tumor I had. Looking back, I view the intervention of my two friends who advocated for me as a key factor in saving my life. Today, I realize that everyone needs an advocate when they are thrust into the complex healthcare system.
I was told I was lucky to have the type of tumor I had versus a glioma, a fast-growing tumor that is not as responsive to treatment as the lymphoma that I was diagnosed. I was told I was fortunate that my tumor responded to the chemotherapy prescribed. In reality, I was fortunate to receive the treatment, that eradicated the tumor, because of the work of my hematologist. We learned that he has dedicated his career to understanding lymphoma cancers as this was the type of cancer his mother died from. As a result, he is committed to finding treatments that could fight this tumor.
I was told I was lucky to have good health insurance and a disability policy that allowed me to receive the care I needed when this unexpected event took over my life. In reality, I had a good medical insurance policy because my former employer took the time to choose a policy that was comprehensive, had a good network, reasonable deductibles and a premium that was affordable. In addition, they had the foresight to offer a disability policy to their employees. This policy allowed me to have an income while I recuperated. As a result of these decisions, I did not have the financial burden that many people face today when they are diagnosed with a catastrophic or chronic disease.
I have been told I am lucky to have a wonderful husband who stood by my side, advocated for me, kept me safe and supported me 100% during my cancer journey. Not sure if this was luck, as we have worked hard to be there for each other in good times and in bad. In addition to my husband, I have a supportive family, friends, and colleagues who prayed and helped us as we traveled through this journey. For all of these people, I am grateful.
I am not sure how much luck played into my journey. I genuinely believe that my faith is my lucky charm. As a result of my journey, my faith is stronger than ever. I truly believe I am here today because God was not ready for me as he still has plans for me! I pray every day to know what I am here to do.
Today, I am grateful I survived a severe healthcare crisis that rocked my world. Although I am not 100%, I am adjusting to a ‘new normal’. As a result of my journey, I have a new outlook on my life and the healthcare system that I work in. I now realize how hard it is to be a patient and a caregiver in today’s complex healthcare system. I am doing what I can to raise awareness through my writing and speaking to educate and empower all to take an active role in their health and healthcare decisions. I also am working to ensure people know about the role a patient advocate plays in helping them to have a voice in their care so the plan of care meets their goals.
Today, I use my time wisely. I look at life with a new view. I am working on projects that give me purpose and allow me to use my skills and expertise to change the status quo. I am using my nursing, case management, and patient advocacy experience to help others who are thrust into the complex healthcare system, so they can learn how to advocate for themselves or find those advocates who can assist them on their journey when they need help.
Today, I write this Blog, Nurse Advocate, to share information with patients, caregivers and all members of the healthcare team to improve the healthcare delivery system. I thank God every night when I go to sleep for giving me the strength to recover and to help change the status quo in a small but meaningful way.