November 24th marks an event that occurred one year ago that interrupted my life in a way that I could not have imagined. On that sunny and clear day, I was driving my car, made a right turn, misjudged the curb, and blew out a tire. As I could not drive the car, I called my husband. When he arrived, I explained what happened and he said that I did not look right. I told him, I felt ok, but he thought something was off. He said he wanted me to go to the hospital, so off we went. After explaining to the Emergency Department physician what happened, I was sent for a CAT Scan. Once the results were back, the doctor explained that they saw a mass in my head and I would have to be admitted to the hospital for further testing. I honestly don’t recall my reaction to those words…and, to be honest, most of the next few weeks are a blur. My husband, family, and friends have filled in some of the blank spots, but there are gaps in my memory which many say might be a blessing.
During this hospital stay, I received numerous test to determine if I had cancer in any other part of my body. Fortunately, I did not and it was determined that the brain was the primary source.
As this was a serious situation and I was not myself, I asked two friends, Marilyn Van Houten, a nurse case manager, and Cathy Bowers, a social worker, and patient advocate to come to the hospital when the Neurosurgeon explained next steps. I was told that the tumor was not operable, but I would need a biopsy to determine the pathology. I asked the doctor who would do the biopsy and he said he would, that he was the best. This scared me, and I asked about going to an academic setting. The hospital I went to is a small community hospital and I did not trust the care I would get for such a serious problem. He said he could try to get me to the University of Miami, but it would take time. During the visit, Marilyn took notes and she said she would try to expedite the process. As a result of her efforts, I was set up with an appointment with a neurosurgeon at the University of Miami the next day.
I visited the neurosurgeon, who recommended a biopsy to determine the pathology which would dictate a course of treatment. Once the biopsy was done, we had a diagnosis; a Primary Central Nervous System Lymphoma.
The Neurosurgeon recognized the severity of my case and coordinated an appointment with a hematologist/oncologist through the Sylvester Cancer Center. The doctor, I learned, specialized in this type of tumor. I was showing signs of pressure from the tumor so Dr. Lossos admitted me to the hospital so I could be stabilized and started on chemotherapy.
This course of care continued for the next few months. I was admitted every two weeks for chemotherapy. I had to stay in the hospital for a few days till my blood levels I reached a safe level for discharge according to the protocol.
There is no doubt in my mind that because I was seen quickly, had the biopsy to provide the doctors with the information they needed to diagnose me, was seen by an expert in the type of cancer I had and was able to start treatment quickly, I am alive today.
Today, I am tumor free! My life is not the same as it was on November 23, 2014, but I am still standing!
I learned a great deal over this past year. The one lesson that stands out for me the most is that I learned to be grateful.
I am most grateful to my husband who was by my side every step of the way. He advocated for me, told everyone we met that I was a nurse and a case manager and that I wanted to take an active role in my care and as a result, I did. He kept my family and friends updated every step of the way. He came to the hospital every day, kept me company and asked the medical team questions when they made rounds so that he knew what was going on. He kept records of my care which came in handy more times that we can count. Those records helped to update new members of the team as they came on board and helped to prevent duplication and medical errors. He made sure that I had what I needed and was safe. When I came home, he cared for me, cooked for me, transported me when needed, took me for walks when I could not sleep, rubbed my back to help me relax and so many other things that I would never have imagined I would ask him to do.
I am also grateful to my family and friends who prayed and supported me. Each was there in their own way and for that I am grateful. Many took the time to come to visit me and spent endless hours sitting with me in the hospital or in my home. There were times that I did not talk, but just having them there was comforting and for that I am grateful.
I am grateful to my healthcare team. Specifically, I am grateful to Dr. Lossos and his counterparts who visited me when I was in the hospital and continue to follow me closely as an outpatient.
I am grateful to his nurse practitioner and his office team who were responsive to our questions and request and always got back to us in a timely manner. I am also grateful to the nurses, the pharmacists, the aides, the housekeeping staff, food service team, the Chaplin and so many others who cared for me on the Oncology Unit at Sylvester Comprehensive Cancer Center. Each made an impression on me and did their part to help me through a very scary and difficult time. They were professional, caring and responsive to my needs and I am forever grateful.
When I was not in the hospital, I utilized the outpatient clinic services that the University of Miami has set up in Miami and closer to my home. The registration team, the laboratory technicians, the radiology department and the nurses who cared for me at the UM Health System and Clinics in Plantation FL when I came in for blood work, MRIs or dressing changes were always friendly, courteous, efficient and asked me how I was doing. This meant a lot to me as it made me realize they cared about me; for that I am grateful.
As I progressed in my journey, it was realized that I would benefit from rehabilitation. I chose Health South Rehabilitation Hospital in Sunrise FL for therapy and was grateful for the care I was provided by each therapist that treated me.
I initially started as an outpatient as I was very weak and had episodes of falling when trying to walk. The physical therapist took the time to explain to me and my husband the things that we could do that would help me regain my strength and keep safe.
Once I completed chemotherapy, Dr. Lossos recognized that I needed additional therapy and recommended inpatient therapy as it would be more aggressive and comprehensive. Again I chose Health South and received excellent care from a team who shared their expertise, patience, and support. I have always admired therapists as they push you past what you think you can do.
My team devised creative ways for me to be able to walk safely despite my bilateral foot drop and neuropathy. When I was feeling low, the other patients inspired me. In addition to the therapists who cared for me, I am grateful to the physicians, nursing staff, case management team, transport team, dietary and housekeeping teams that made my stay productive.
It is hard to be a patient, but each member of the team did their best to make the stay as pleasant as possible. I have to say that being an inpatient was the best thing I could have done for my confidence and safety.
Once I was discharged, I returned to outpatient therapy in order to continue to build my strength and fine tune the exercises that help me physically and cognitively. I am grateful to each of my therapist who took the time to educate me so I understood the need for a home program to continue to address the physical and cognitive issues that I sustained.
Once discharge from formal therapy, I began swimming and took up water aerobics at Central Part, the local aquatic complex in Plantation FL. Here I met a wonderful group of people that make exercising fun.
I am grateful to the company I worked for and for the benefits programs they had in place that enabled me to get the care I needed. Unfortunately, I could not continue my employment due to my condition, but as a result of the benefits they had in place, I am able to continue my treatment.
I am grateful to my colleagues and friends that supported me through the process and continue to support me today. There are too many people to recognize in this post, but I would like to thank my manager, Carol Brault who made the transition away from work as painless as possible. I would also like to thank a friend and colleague, Connie Sunderhaus who stepped in for me when I could no longer work. She was able to finish the various projects I was working on, carry on with many of the ongoing projects, and develop new programs that are benefiting the company as well as the industry of case management and care coordination.
I am also grateful to all of my friends on my various social networking sites. You have kept me company, allowed me to continue to learn, grow and develop new skills that have sustained me during low times. I have met many new people who have challenged me to write and share my experience of being a patient such as the members of Aspiring Nurse Bloggers. Through this group, I learned about blogging and created my current Blog, Nurse Advocate.
I am also grateful to my nephew Patrick Douville and Kendall Spera who are my editors. They ensure the content contained in Nurse Advocate is a well-written resource for all members of the healthcare team as well as to consumers.
As I look back on this past year, I realize my life has been on a rollercoaster and my world has been turned upside down. Yet, I am grateful to be here, to be recovering, and to have a family, friends, and colleagues who support me unconditionally. For these things, I am most grateful.I don’t know what the future will hold, but am looking forward to the ride.
I am grateful to all who have read and continue to read Nurse Advocate going forward. I look forward to your comments, questions, and suggestions. Thank you for everything!
I hope you and your families have a Happy Thanksgiving.