As a nurse working in critical care as well as a catastrophic case manager, I have always marveled at the resilience of the human spirit. Over my career, I have met and cared for so many brave and courageous people, but it was not till I became a patient myself that I could comprehend some of what they went through.
This week I celebrate one year of completing chemotherapy for a central nervous system brain tumor that turned my life upside down. As I have shared in previous posts in Nurse Advocate, I was extremely fortunate to have found an excellent treatment team who were able to diagnose and treat me successfully. This would not have been possible without the help of my husband who has been and continues to be my rock as well as my longtime friends and colleagues Marilyn Van Houten, Case Manager and Cathy Bowers, Patient Advocate. Each has been my advocates and helped me to understand what was happening, supported me through difficult days and helped me celebrate my successes.
Being able to diagnose and treat cancer has come a long way over the years. It is exciting to see the innovations that happens through the hard work of Oncologists/Hematologists, Oncology Nurses, Pharmacists and others who dedicate their careers to understanding various forms of cancer and the treatment options available. Until perfected, complications continue to occur, and it is up to the resilience of the patient and their caregivers to move forward.
I am an example of someone impacted by the harsh side effects that can result from the chemotherapy agents designed to eradicate cancer from our bodies. As a result of my chemotherapy, I have nerve damage which has caused bilateral foot drop and chemotherapy-induced neuropathy in my hands and feet. The combination has left me with ambulatory issues, the inability to drive and memory deficits. Despite these complications, I am grateful to be alive; to be able to participate in family and friend’s activities, and live life!
Looking back from where I was last year, to where I am today, I realize how much I have progressed. Last year at this time, I could not walk independently and required maximum assistance to move from one chair to another. I also needed help toileting, fixing meals and showering. I could dress, but due to the weakness in my hands, buttoning a shirt, zipping pants and picking up things was a challenge.
Toward the end of my chemotherapy treatment, my Hematologist recommended that I enter an inpatient rehabilitation program for intense rehabilitation to help rebuild my strength. At the time, I was not looking forward to going to another hospital but knew it was what I had to do. I was lucky to have a Health South Rehabilitation Hospital near my home and opted to go there instead of to a rehabilitation program at the University of Miami due to the distance.
To get the process moving, I called the Director of Case Management at Health South whom I knew and asked her to help me expedite the admission process. She was able to assist me and arrange for an evaluation with the physiatrist. After the evaluation, I was admitted to the inpatient unit for aggressive therapy.
As a Certified Registered Rehabilitation Nurse and a Board Certified Case Manager, I had a good amount of experience with rehabilitation as I had many patients whom I accompanied over the years to various rehabilitation programs, yet being the patient was a different story. As with the other aspects of my journey as a patient, I was again surprised at the reality of the experience and what rehabilitation entailed. It is truly a humbling experience.
On day One, I was evaluated by the various therapists to determine my plan of care. Each came in and asked me a series of questions to gain insight into my history and discussed my goals and what I wanted to get out of therapy. I felt that I was part of the process and that each professional was interested in helping me reach my goals. After the evaluations had been completed, the team met to develop my plan of care and a schedule I would follow during my stay. I was to receive physical therapy (PT), occupational therapy (OT), and cognitive therapy which comes under Speech Therapy over the next two weeks. PT and OT were ordered twice a day for an hour each. Cognitive therapy was once a day for an hour. As Health South had a therapeutic pool, I was able to participate in pool therapy an hour a day which was a wonderful experience for me as I am a ‘swimmer’. The water therapy allowed me to work on my balance in a safe environment and to do the various exercises I could not do on land. I believe it was pool therapy that helped me the most emotionally.
I also was introduced to my case manager Annie, who explained her role and told me to call her anytime. Her name and number were put on my white board so I could contact her as needed. I also had a team of nurses and aides who helped me when I was in my room. It was truly a team effort! As a leader in the field of case management, I was proud to see that case management at Health South was front and center. Information on case management was in all of the reading material that I was provided. The information showed me how my case manager could help me throughout my stay and work on my transition to home once I was ready. It was comforting to know there was someone for both myself and my husband to reach out to with any questions.
Attending therapy was another experience and one that I was somewhat apprehensive as I was so weak and did not know what to expect. We all have exercised from time to time, but when you are debilitated and weak, therapy takes on a whole new meaning. My therapists encouraged me and took the time to explain the various exercises and how they would help me. They were with me every step of the way to ensure that I was safe.
At first,I was afraid to walk as my legs could not hold me and I had several falls. Early in the process, one of the physical therapists saw the issue that I could not flex my foot due to the bilateral foot drop, so he wrapped my sneakers with ace bandages so my feet would be in the correct position to ambulate. This made a huge difference and helped build my confidence. Also, the therapist recommended that I use a walker for stability. These simple suggestions allowed me to be safe when I walked which allowed me to start to build my strength.
Another thing I observed during my stay was how determined the patients were and how attentive the therapists were to each patient. Many times, I had to share a therapist, but I never felt like I did not get the attention I needed. I enjoyed watching the various therapist work with their patients and was impressed with the caring manner as they encourage the patients (I included) to do more than they thought they could do.
The modality that surprised me the most in my program was cognitive therapy. I did not realize that I had cognitive deficits until I was asked to do various tasks that showed my deficits. During sessions, the therapist used various exercises that helped me see where I had some problem and some tips to compensate for the deficits I was experiencing.
Today, I am noticing that as I add more and more activities to my daily routine, I realize I am not the same person I was before, mentally or physically. I have to remind myself to take my time, to focus more on what I have to do and use things like my calendar and alerts to help me remember things. I am grateful to have colleagues and friends who are patient with me and support me through the process.
In retrospect, being an inpatient for two weeks was not something that had I looked forward to, but I realize now it was the best thing that I could have done for myself. As I gained strength, confidence and hope.
After discharged from the inpatient hospital, I returned to outpatient therapy where I continued to progress. With the help of orthotics, I was able to progress from using a wheelchair to a walker, to a quad cane and then to a straight cane. At each junction, I was fearful, but with the help of my therapists, I made the transition safely.
Today, I have finished formal therapy. I have exercises that I do to help me continue to improve with regarding the chemo induced neuropathy and bilateral foot drop. I am also enrolled in a water aerobics class and am back to swimming laps at a local aquatic center near my home. These activities have helped me immensely and helped me feel somewhat ‘normal.’
What has surprised me as I traveled through the past 14 months is how resilient we are when given the right tools to care for ourselves. As I said, I am grateful to my husband, my family and friends, and my treatment team. I also realize how fortunate I am to have an excellent insurance plan that paid the bulk of the costs of the treatment that I required.
I urge patients and their caregivers to advocate for aggressive rehabilitation when needed. Today, many managed care organizations offer rehabilitation to be done in a skilled care facility instead of an acute rehabilitation program. This may be appropriate for some people who cannot participate in aggressive rehabilitation, but if there is any doubt, please insist on being evaluated for an aggressive program, it makes a difference!
Would love to have your comments and suggestions for future posts for Nurse Advocate. My goal is to make posts useful in helping patients, caregivers and healthcare professionals improve care coordination and transitions of care. Leave a comment below, or email me directly at allewellyn5@bellsouth.net
In closing, here are some interesting resources that I have come across recently that highlight the resilience of people who have experienced a cancer diagnosis, who have endured a catastrophic event or live with a chronic condition that impacts their life.
Celebrate Life Events Fighter and Slide Show: this slide show produced by Heather M. Spencer, Documentary Film Maker to be used in the series of Celebrate Life Events she hosted across the west coast of the United States. Celebrate Life Events Fighter and Slide Show highlights people from all over the world who have/had all types of cancer. Each shared their thoughts and hopes in this inspiring video. Heather also included tips to assist caregivers, friends and family in helping cancer patients through their journey. The video contains soothing music and beautiful photos with inspiring quotes that will inspire and empower all who are going through life’s changing events. So grab a glass of wine, turn up the volume on your speakers and enjoy the show! Don’t forget to share this resource with all who could benefit.
Winners: A Novel by Danielle Steele. I am a big Danielle Steele reader, so when her new book Winners was released, I got my copy. The book is about a series of people who experience life changing events and discover a common link that allows them to overcome their challenges. The main character is Lily, a young girl who in training for the winter Olympics on the US Ski Team. As a result of a freak accident, she suffers a spinal cord injury that changes her life in a second. The story shares her journey through the recuperation process. What captured my attention was the reference in the book to Craig Rehabilitation Program. Craig is a world renowned rehabilitation center in Denver Colorado. The book takes you on a journey that shows the power of rehabilitation and how it can help someone reach their maximum potential in spite of a tragic event.
When Breath Becomes Air by Dr. Paul Kalanithi. This is a book about death from someone who has died. Dr. Kalanithi wrote this book the last year of his life. It is a sensitive and moving book that I would highly recommend. Click here to read the reviewfrom the NY Times on this important book.
Love That Boy is a book written by Ron Fourier, a political journalists. The book is about his son who has autism and how he learned to be a better parent. If you have or know someone who has a child with autism or another medical or physical challenge, pick up a copy.
Love That Boy is a book written by Ron Fourier, a political journalists. The book is about his son who has autism and how he learned to be a better parent. If you have or know someone who has a child with autism or another medical or physical challenge, pick up a copy.
Thank you for reading Nurse Advocate. I value your comments and recommendations for future posts on topics that you have experienced as a patient, a caregiver or a healthcare professional. Leave a comment or email me directly at allewellyn5@bellsouth.net.
