Follow by Email

Friday, November 27, 2015

Giving Thanks Today, Tomorrow and Always







Over this Thanksgiving Holiday I hope you have had the time to stop and reflect on all you are grateful for in your life. 

With the news of unrest around the world, we can sometimes forget to be grateful and appreciate the things that make our lives happy and peaceful.

For me, it is the little things that bring joy to my life.  Having Thanksgiving dinner with friends, welcoming a new baby into the family, getting back into the pool after a week of being away, and hearing from a friend who I have not heard from in a while and making plans to have breakfast with her while she is in town for the holiday. 

These are just a few of the things that have brightened my life this past week and help me realize that life is good.

Reflecting on the positive aspects of our lives is important for our mental health and for our overall wellbeing, so please take a few minutes this weekend to stop, to reflect and to enjoy the little things that bring joy to your life.

I will be back next week with a new post for Nurse Advocate. If you want to review some of the older posts, please feel free to click on Nurse Advocate and scroll down to the Blog Archives. There you will find posts from July 2015 when Nurse Advocate was first introduced.

In closing, I want to thank everyone who has made a comment on posts or who has sent me suggestions for new topics over the past few months. It has been gratifying to know that the information shared is useful and is making a difference in the lives of patients, caregivers, and healthcare professionals. 


Have a good weekend!


Sunday, November 22, 2015

Feeling Grateful




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, MarilynVan 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 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 Planation 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 my 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.



Tuesday, November 17, 2015

The Power of Staying in Touch




Today with technology in place, many of us feel that we are sometimes too connected. Yet, when we are sick, we can feel isolated. One of the things that sustained me over the course of my illness was receiving a card, an email, a phone call or a visit from family, friends and colleagues. It meant so much to know that people cared and were thinking of me, praying for me and sending positive thoughts.

There were times when I could not talk on the phone or did not feel up to going onto the computer. It was during these times, that my husband helped me by taking the call, providing an update via email or reading a card to me that someone sent.   

As a result of my experience I have a new found respect for the power of keeping in touch by sending a note, making a call or scheduling a short visit.  Today, I do my best to keep in touch with people I know who are sick so they know they are not forgotten.

One of the tools my husband used during my illness was a site called CaringBridge. CaringBridge is a free online service that allows someone to set up a simple webpage specifically for a person. It is on this page that updates can be posted 24/7. Friends and family are invited to register as followers. 
When an update is posted, all signed up will receive an email notifying them that a new post is available, that they can read when they have time.

The site also allows followers to write a note at their convenience. For me, the personal notes and good wishes meant so much that I read them often and still do. We are not posting that much now as I have stabilized but knowing the site is there is comforting

Another benefit that CaringBridge offers is that the site is secure. Today, many people don’t like to post personal things related to health on social media, so Caring Bridge is a good alternative. 

If you want to visit my CaringBridge page to better understand what I mean, feel free to go, Nurse Anne at http://www.caringbridge.org/visit/nurseanne

If you have not visited before, you will have to sign-in, but it only takes a minute.

In closing, in case I have not thanked you for keeping in touch with me over the past year….THANK YOU!  


Saturday, November 7, 2015

What To Do While Waiting




Waiting is something we all experience on a daily basis. We wait in supermarkets, on the drive to and from work, at missed lights, in traffic jams and so many other aspects of our daily lives.  So why was waiting one of the most difficult challenges I endured as a patient over the past year? I have been thinking about this recently and wanted to share my thoughts and some ideas that I came up with that helped me pass the time during what seemed like unending waits times. 

One of the most difficult things about being a patient for me was losing control of my own time. So many times over the past year, I was on someone else’s schedule and had to wait for others to help me do simple things that I could not do for myself.

During chemotherapy treatments, I had to stay in the hospital extra days as my body did not clear the chemo in a timely manner. I also slept a lot during those stays and again when I came home due to the effects of the chemo on my body. In retrospect, I realize that I lost a good amount of time that I will never get back. As a result, I cherish everyday and try to make the most of my time.

In the hospital, I would get frustrated when I had to wait for an aide, a doctor or a nurse as I did not know when they were coming back. Minutes seemed like hours and at times, I felt like they did not value my time which was upsetting to me. I knew the staff was busy and I was not 'their only patient', but that rationale only lasted so long.

What helped me to better understand why a delay was happening was having someone take the time to explain why I was waiting. This simple acts of courtesy made such a difference and allowed me better understand the situation.

It was reassuring to know that the staff recognized that waiting was uncomfortable and could be distressing.  It was so appreciated when a nurse or secretary would recognize that ‘I was still waiting’ and would smile at me which let me know they had not forgetten me. Many took the time to let me know that I was next or asked me if I wanted a blanket, something to drink or a more comfortable chair. These simple acts of kindness changed a stressful situation into one that allowed me to know that I mattered and was not forgotten. 

Many of my visits were in the hospital, clinics, laboratory, radiology departments and/or the doctor’s office where it seemed like the temperature was sub-zero. As a result, my husband and I both learned to dress so we would be warm. In some of the areas, there were blanket warmers which was a nice treat….but being prepared by bringing a sweater and wearing socks to keep my feet warm really helped if the office or clinic did not have a blanket to lend out.

As I knew I would probably have to wait, I brought things that allowed me to pass the time doing things that were important to me. Here are some ideas for you to consider: 
  • I always had my smart phone with me and made sure if was fully charged. If I was going to be gone all day, I would also take my phone charger so I could recharge as needed.  I tried not to talk on my phone unless I was in a private room or a secluded area so I did not disturb anyone else, but did text and use my email to communicate with family and friends
  • I also logged onto social media sites like Facebook, LinkedIn, and Twitter. Doing so allowed me to read what everyone was doing, catch up on news briefs and stay connected with other people who were going about their daily lives. 
  • As it was important to me, I tried to keep up on trends in healthcare and shared posts that I thought colleagues would appreciate. Reading the responses that people posted allowed me to know, I was not alone and had friends and colleagues who valued my opinions and suggestions.  I was glad that most of the visits I had were in buildings that had free WIFI which allowed me to stay connected
  • Talking to people like housekeeping as they cleaned the room, the aide who made my bed, the nurse as she gave me my medications or the people who delivered the food trays also helped pass the time. Most were glad to talk and joke with me as they did their work and appreciated being recognized for what they were doing. I made some good connections and these people would stop in from time to time to say hello and ask me if I needed anything. This always made me feel good and let me feel that I was part of the team
  • During many of my wait times, I would make lists of things I needed my husband to bring if I was in the hospital. Sometimes it was a book that I wanted to read or some clean clothes that I could use as my stay was sometimes extended. 
  • I also put my ‘bucket list’ together of places I wanted to go, people, I wanted to see or call and things that I wanted to do when I got home. This helped keep me focused and feel useful
  • Another task I found that helped to pass the time was coloring.  Adult coloring books are the new craze that a lot of people are trying out to help relieve stress. Click here to access a podcast you might want to listen to if you have not heard about this latest craze
  • Many times I used the time to say my prayers which helped me relax and allowed me to let go of some of the fear and frustration that I felt
As I look on the positive side, waiting gives us the time to slow down, to reflect and organize our lives. 

I hope this post was helpful. Please feel free to share the information if you know someone who is in the hospital, has a lot of doctor’s appointment or is getting treatment that causes them to spend a lot of time alone and WAITING. 

I look forward to your ideas on how you pass the time as you WAIT. Please leave a comment in the comment box below or email me at allewellyn5@bellsouth.net