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Saturday, July 9, 2016

Five Incredible Gifts of a Life Changing Illness




Being diagnosed with a life changing illness or experiencing a catastrophic injury changes your outlook on life. My experience began on November 24, 2014 when I was diagnosed with a central nervous system lymphoma (Brain Tumor). Yet, it was not until recently that I have come to grips with the reality of my situation. Upon diagnosis and through the initial treatment, I was too sick to realize what was happening to me. My husband was my advocate and was with me every step of the way. He talked to the medical team, made critical decisions, kept my family and friends updated and prayed that I would live. With the treatment I received, I was able to live and am grateful to my husband, my medical team and my family, friends and colleagues who supported me then and continue to support me through this difficult journey.

In this week’s post, I would like to share 5 gifts that I learned from my journey. They include realizing:

The magnitude of being nice. As children we are taught to ‘be nice’. It was not till I was sick that I really appreciated the magnitude of what being nice really means. When I was a patient in the Sylvester Cancer Center, I had a great healthcare team who provided the treatments I needed to survive but were also nice to me.  A few that stood out for me were the residents who visited me each morning to gather information before daily clinical rounds. Usually they woke me up at 7:30 am. They always apologized for waking me. They took the time to ask me how I was and listened to me when I answered their questions. When they were finished examining me they pulled the covers back up so I could go back to sleep. They told me to call them if I needed anything and were available when I did.  These things may seem trivial, but they meant a lot. 

The next person who made the time in the hospital pleasant was the young man who delivered the food trays. He always had a smile and a kind word. He was this way with me, but I heard him throughout the day making a joke or sharing a kind word with the staff as well as the other patients. He always placed my tray on the bedside table and made sure it was within easy reach. If I wanted a different kind of juice or hot water for tea, he said ‘let me get that for you’ and came right back. I am sure he was busy, but he never made me feel like I was bothering him, or put me off so he could ‘get done’.  Although eating was the last thing on my mind, his visits were a bright spot of my day. 

I also enjoyed the housekeepers who cleaned my room. They were pleasant and friendly and made me feel better because I was in a clean room. They respected my privacy, but would engage in conversation which many times broke up the day for me and for them!  One of the housekeepers always made me laugh as she would call me pretty lady. Others who were Spanish speaking, put up with me as I tried to use my limited ability to speak Spanish when conversing with them. 

The nurses were also an important part of the team. I loved learning about their career goals, their families and where they came from. They were open to share and talk and this made me feel good. One nurse made my day when he told me the nurses viewed me as their colleague. Being nice is not easy, but it really helps to improve the experience of being a patient.  

What it means to be grateful: In the early days of my illness, I was not really aware of what was going on. My husband was my advocate and never left my side. He talked to the doctors and nurses and made sure my plan of care stayed on track. He shared information about my condition that he observed and made critical decisions that I know he was not comfortable in making. He was there to help me when I could not do things for myself and had the patience to allow me to do things for myself when it would have been easier for him to do them. Today, as I continue to improve he continues to support me and for this I am grateful. I am also grateful to my family, my friends and the many colleagues who kept me in their thoughts and prayed when they heard I was sick. I am grateful for those who continue to keep me in their prayers as I continue to recover. It made me realize the importance of friendship.  

The value of staying in the moment: I learned that we have to appreciate every day as none are guaranteed. My life changed in a second and it blindsided me with a life changing diagnosis that turned my world upside down. The experience has taught me to stay in the moment and to appreciate the little things. Today my life if very different than it was before November 24 2014, but in a way it is also somewhat better. This experience has helped me to see with greater clarity what is important in this life and for that I am grateful.

The Importance of Being Connected: Staying connected to family and friends during my journey was important to me. Today, with social media, it makes it easy to stay connected. One of the tools we used early on in my cancer journey was Caring Bridge, an online tool that allowed my husband to provide updates to friends and family. In addition to keeping everyone informed, people who read his updates could share thoughts and send best wishes which helped us both immensely. 

As I got stronger, I returned to my favorite social media sites and shared news and information from e-letters and other forums that I found interesting. This helped me stay connected on a professional level as well as a personal level. 

Today, I write a Blog, Nurse Advocate to share some of the things I learned from my experience with the hope I can help a patient, their caregiver and members of the healthcare team better navigate the complex healthcare system. I also learn from the comments people write after they read my blog. I love when people share their experiences as it helps me continue to learn. Writing my Blog has been a therapeutic exercise for me and has helped me adjust during trying times.

Returning to Activities: when you are sick, you tend to become isolated. You focus on yourself because you are in a survival mode. As you improve, you start to want to do more, but may find it challenging due to weakness from inactivity. For me, completing chemotherapy and starting a rehabilitation program allowed me to gain strength so I could do more things safely.

Becoming active made me less isolated and allowed me to realize I was still relative in the world I lived.  Today, because of the complications from the chemotherapy, I am not able to drive so I am ‘home bound’ for the most part. As a result of the rehabilitation program that I attended, I learned various exercises that I could do on my own. These helped me gain strength and become more active.

I also am lucky to have a community pool that has handicap accessible facilities that allows me to swim and participate in water aerobics. If my husband cannot take me to the pool, I am able to use UBER which is a cost effective alternative to a cab. Friends also have been gracious to pick me up and drive to meetings, take me out to lunch or other social engagements that come up from time to time.

I am still hopeful that my foot drop and neuropathy resolve, but in the meantime, I am adding more activities to my day that helps me gain strength and allow me to make good use of my time.

I am grateful to be able to give back to organizations that are important to me professionally. Volunteering and giving back has been an important component of my recovery as it has allowed me to take small steps in improving my cognition and organizational skills. I have learned that as a result of brain surgery and chemotherapy, many of the executive functions that we take for granted have been impacted. Being involved with various projects is stimulating and has helped me build my confidence and kept me active.

As I adjust to my ‘new normal’ I am trying to put each of these gifts into practice each day. It is not always easy, but I am working on one day at a time.

I hope this post has provided you with insights and ideas if you are a patient, a caregiver or a healthcare professional. Please feel free to share what you have learned from your experience as a patient or as a care giver caring for someone experiencing a life changing event.

Have a good week!