November 24th marks an event one year ago that interrupted my life in a way 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 had happened, and he said 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 what happened to the Emergency Department physician, 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 don’t recall my reaction to those words…and honestly, most of the next few weeks are a blur. My husband, family, and friends have filled in some blank spots, but there are gaps in my memory that many say might be a blessing.
During this hospital stay, I received numerous tests to determine if I had cancer in any other body part. Fortunately, I did not; the brain was determined to be 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 the next steps. I was told the tumor was not operable, but I needed a biopsy to determine the pathology. I asked the doctor who would do the biopsy; he said he was the best. This scared me, and I asked about going to an academic setting. I went to a small community hospital and 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 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 the 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 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 daily, kept me company, and asked the medical team questions when they made rounds so that he knew what was happening. He kept records of my care which came in handy more times than we can count. Those records helped update new team members as they came on board and helped 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. Sometimes 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 in the hospital and continue to follow me closely as an outpatient.
I am grateful to his nurse practitioner and office team, who were responsive to our questions and request and always got back to us promptly. I am also grateful to the nurses, the pharmacists, the aides, the housekeeping staff, the food service team, the Chaplin, and others who cared for me in 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, I 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 what we could do to 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 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, and dietary and housekeeping teams that made my stay productive.
It is hard to be the patient, but each team member 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 to continue to build my strength and fine-tune the exercises that help me physically and cognitively. I am grateful to each of my therapists who took the time to educate me so I understood the need for a home program to continue addressing the physical and cognitive issues I sustained.
Once discharged 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 their benefits programs that enabled me to get the care I needed. Unfortunately, I could not continue my employment due to my condition, but I can continue my treatment due to the benefits they had in place.
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 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 benefit the company and the case management and care coordination industry.
I am also grateful to my friends on my various social networking sites. You have kept me company and allowed me to continue learning, growing, and developing new skills that have sustained me during low times. I have met many new people who have challenged me to write and share my patient experience, such as the members of Aspiring Nurse Bloggers. I learned about blogging through this group and created my current Blog, Nurse Advocate.
I am also grateful to my nephew Patrick Douville and Kendall Spera, 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 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, recovering, and have family, friends, and colleagues who support me unconditionally. For these things, I am most grateful. I don’t know the future but look forward to the ride.
I am grateful to all who have read and continue to read Nurse Advocate as we advance. I look forward to your comments, questions, and suggestions. Thank you for everything!
I hope you and your families have a Happy Thanksgiving.