We have all been there–one minute, you’re fine, and the next, you’re not.  My disruption came in the form of a serious medical issue that completely interrupted my life. In this week’s posting, I want to discuss the experience that changed me. I will also share some tips and resources that helped me during my darkest times with brain cancer.

I have always been a very active person, and I have always kept myself healthy.  I have had many wonderful experiences, both personally and professionally, throughout my life and probably took my good fortune for granted, as most of us do until there is an event that changes our lives.

As a nurse, I have had the opportunity and privilege to work with professionals in a team setting, in which we provide quality care to patients. I, however, never really tested our healthcare system personally. I always knew problems existed, but it wasn’t until late November 2014 that I had the opportunity to experience it all firsthand.
On November 24, 2014, I was diagnosed with a central nervous system brain tumor. The only symptom I had before diagnosis was blurry vision, which I attributed to new glasses I had gotten recently. I went to my ophthalmologist to address this, and the doctor assured me the glasses were fine and I probably just needed to get used to them. Leaving the appointment, though, I hit the curb with my car. As a result, I got a flat tire and called my husband because I could not drive the car. When he arrived, he said I looked confused and was not acting like myself, so he took me to the hospital. Hours later, a CAT scan revealed the tumor in my brain.
This diagnosis thrust me into the complex world of health care. I was admitted to a small community hospital, where I received various tests to determine if the brain tumor was the primary site or had metastasized. I was lucky, or as lucky as you can be with a brain tumor, that all of the tests were negative, and the brain was the primary site.
After the testing, the neurosurgeon recommended I go to another neurosurgeon at the University of Miami for further treatment. This was a relief, as I did not want to receive care for such a serious condition at such a small hospital but preferred an academic setting. But getting an appointment with a specialist at a large teaching hospital is not easy. One of my colleagues called a few people and secured an appointment the next day with the neurosurgeon. I was evaluated by the neurosurgeon and admitted to the hospital for a biopsy. We learned that the tumor was inoperable, so chemotherapy would be the course of treatment. I was seen by an expert team coordinated by the Neurosurgeon. The hematologist/oncologist I was referred to me was a specialist in this type of tumor. He was able to see me right away and begin treatment. I truly believe that the expedited care I received from this expert team saved my life.
As most of my journey’s early days are blurry, I turned to my husband for information. He pointed to four large binders that he had built that detailed my course of care. Having a system to keep track of the medical records and all of the professionals who treated me was critical.  The binders also contained business cards with information for important contacts that he communicated with along the way. The information in the binder detailed the dates when we saw the various physicians/providers, what they said, and the treatment plan. The binders went with us to every appointment so that if there were questions, we could produce a discharge summary, doctor’s notes, or my husband’s notes on the visit to help clarify the care plan.
It is important to remember that, as a patient with a serious medical condition, you are the only constant in your care, so having a way to maintain the history and the course of care is critical. The plan of care can become confused as new players enter the picture.
Another tool that helped in unanticipated ways was our cell phones.  My husband showed me a few videos he took when I was having trouble communicating. The videos and the documentation in the binders were eye-opening, as they showed how sick I was and how lucky I am to have come as far as I have in a few months. He also used these videos to explain what he saw at home to the medical team and how my personality changed due to the tumor.
I attribute my recovery to the medical team, nurses, and pharmacists at Sylvester Cancer Hospital at the University of Miami. Because of their expertise and close supervision, I am here today. And through my husband’s love, patience, and support, I have been safe and cared for. I had several friends who assisted us and untangled many of the roadblocks that often hindered care. I also had a very good family and friends support system, who prayed for me and kept in touch, providing intangible support in times of isolation.  Having an advocate when you enter the hospital is very important. The advocate can be a significant other, a family member, a friend, or a professional.

Today, there are professionals such as nurse case managers and professional, patient advocates with whom you can contract privately to help you and your family navigate the complex healthcare system. These professionals can be a godsend for the family and the patient during a difficult and confusing time.

In the midst of overwhelming and complex treatments and developments, communication can be difficult. To help with keeping friends and family updated, my husband set up a Caring Bridge website.  This is a free service where people can set up individual sites to update others on the progress or challenges a loved one faces. Family and friends can leave comments and well wishes. The site was a help for my husband; it alleviated the stress of making repeated phone calls with updates.  My husband would update the site after each doctor’s appointment and hospitalization. I gained comfort in reading the comments, as they showed the support I had behind me. It was very uplifting.

My husband was able to take off from work and visit with me daily, sometimes twice a day at the hospital. This was a blessing. Due to the type of chemotherapy, I was admitted to the hospital every two weeks, usually for 5 to 7 days at a time. His presence and assistance carried me through a very challenging time.  He was a help to me when the nurses were busy and I needed a cup of ice or a soda. Since he was the only relative in the area, I depended on him for everything.

It is important to plan to ensure a similar type of support system.  Families with other members in the same area need to make a visitation schedule to make the most of the patient’s time and provide support to the primary caregiver. If possible, find out when the medical team visits so that someone can be there to assist in receiving updates and asking questions that clarify the course of care.  Have a list of questions ready so you are prepared for the team. Another way to handle questions or problems that need to be addressed is to ask the nurse to set up a family conference to resolve issues. This is common in most hospitals today, so don’t be afraid to ask.
I also recommend you share with the healthcare providers on your team some information about who you are. Tell them the type of work you do or did; tell them about your family and some details about your personal life. These details remind them that you are not just a patient but also a person. While patients are very important and should be viewed as the center of the care team,  many healthcare professionals may become desensitized as they see so many cases and sometimes forget to consider the uniqueness of each patient. Telling the nurses, doctors, and other team members about yourself can change their perspective. Revealing this information reminds them that you are an individual;  you have people who love you, depend on you, and want you to improve. So many times, patients lose their identity in the nonstop pace of our complex healthcare system. Bring in photos of your family and friends so that the healthcare team is reminded of the person behind the patient.
After the third course of chemotherapy, I had an MRI that showed that the tumor was gone: I had not expected to hear this when I went to my appointment with the Hematologist/oncologist. I had thought the doctor would tell us the tumor shrunk, grew, or was the same, and he would give us details on the course of care. We were shocked and grateful for this news as it meant the chemotherapy was working. The plan was to continue to course.
As part of a teaching hospital, rounds are made by a large team of professionals. The team on the unit where I was a patient comprised the attending physician, residents, interns, medical students, nurse practitioners, and pharmacists. The people on the team changed at different times during the month, so as a patient, you are constantly meeting new people.  Again, the burden of keeping the team up to date falls to the patient and their support system so having that binder handy can help. For us, referring to the binder about various treatments, medications, and care plans helped us avoid medical errors. It showed the team that we were engaged in my care and could clarify issues they could not find in the current record.
On week five, the team visited me daily and checked my reflexes as part of their examination. On exam, I could not flex my feet, meaning I had foot drop in both legs. This was a sudden change that had occurred overnight. This made walking difficult to the point that I needed assistance to get up out of bed. As a result of this change, the attending ordered one of the drugs that were part of the protocol (Vincristine) to be stopped as it could cause nerve damage.  In addition, I was seen by a physical therapist who ordered a rollator walker for me. I received this in the hospital and could use it to walk for short distances with someone with me as I was very weak.
As an inpatient, I finished my six chemo treatments at the end of March. My Hematologist wanted me to have two additional treatments for ‘insurance’. These treatments could be outpatient as it was a single drug. This was a great relief as I was tired of being in the hospital, but it was a lot of work for my husband. Once I was discharged, I had trouble using the walker due to weakness and had a few falls. As a result, my husband had to be with me whenever I used the walker so he could catch me if I started to go down. It was a very scary time as I feared falling and breaking my hip or another body part.
On my follow-up visit, I asked the doctor if I could attend Physical Therapy, and he agreed. As an outpatient, I went to a facility near my home and learned the inability to walk was due to muscle weakness. They gave me exercises to help me build my muscles, but I was advised not to use the walker as I was at high risk for a fall.  As I still had chemotherapy as an outpatient, the progress was slow, but it was good to be doing something to improve my condition.
As I could not walk, I had to have help transferring from the bed to a chair, assistance with going to the bathroom and getting a shower. My husband did all of this, cooking our meals, doing the laundry, and transporting me to doctor’s appointments as they came up. He did everything for me, which ensured that I was safe.  As a result of the chemotherapy, I had a poor appetite and slept a great deal. Many people shared ideas to help with my nutrition.  They suggested protein shakes and other types of food that would build my immune system and provide the nutrition I needed to heal.  This was helpful, and I tried my best to eat and drink fluids. It was hard as I had no appetite, so I sometimes felt I had to force myself.
Early after my discharge, my husband asked me; should you have gone home with all of these problems? When I thought about it, I should not have come home as it was not safe, but no one in the hospital did an assessment or asked me if I felt safe.  I wanted to come home also, so I did not push the fact that I would be difficult to care for. We were lucky that nothing happened to me during this time, as any injury would have set me back. My husband was an excellent caregiver and never left me alone. However, having a case manager or social worker evaluate me before discharge would have been safer.  If you are ever in this situation, ask your nurse or doctor for an evaluation by a case manager or discharge planner. This is important as they can help with resources such as home care or equipment that could be set up before you leave so your transition home is safe.
In early April, I finished the additional chemotherapy and saw the Hematologist. Before the visit, I had an MRI that showed I remained tumor-free. As the doctor examined me, he said he wanted me to go into inpatient rehabilitation as it would be more aggressive, and I was very debilitated and weak. He wanted me to go to rehabilitation at the University of Miami. Still, we could not get an appointment with the Rehabilitation doctor till mid-May, and I wanted to start the process as soon as possible.  I also wanted to go to the facility nearer to my home. The facility I was going to as an outpatient did have an inpatient hospital where I knew I would get excellent care. I went to see the Rehabilitation physician there and was admitted right away.  The doctor explained I would be in for a two-week stay, as the insurance usually approved. He said they would monitor my progress, and if I needed more inpatient treatment, they would see if the insurance company approved it.
Going into inpatient rehabilitation was the best thing I could have done. I had physical and occupational therapy twice a day, cognitive therapy once a day, and pool therapy.  The therapists were excellent and came up with creative ideas that allowed me to build my confidence and walk safely. They also explained things to me that I did not understand why I was having trouble walking and gave me exercises to build up my muscles and balance.
Through the therapy team’s guidance, I improved physically and mentally.  I found strength from my faith, support from friends and family, and other patients at the rehabilitation hospital who worked alongside me. Many were older, and many had serious problems. Their hard work and progress made me see that I could also improve through therapy. I learned that the cause of my inability to walk was the result of peripheral neuropathy and nerve damage from the chemotherapy. This should resolve, but it is a very slow process. After two weeks, I was discharged from the inpatient hospital and readmitted to outpatient therapy as there was still a lot of work to do. This time when I came home, I was more independent and could do more daily living activities with minimal help. I still needed assistance but felt more confident as I continued to improve.
Another important member of my team was the psychologist/psychiatrist. When life changes and the future is unclear, having someone to talk to is important for the patient and the caregiver. I had two consultations (one in cancer and one in a rehabilitation hospital) with the psychiatric team. Honestly, I was having doubts about my life if my legs did not improve or the tumors returned, and having someone to talk to was important. They could not answer me, but knowing that what I was going through was normal was important.
Currently, I can walk with a walker and transfer independently. This has been a big confidence booster for both me and my husband as it means he can leave me alone for short periods of time. This progress has allowed him to return to work and do other things that he could not do as I could not be alone. I still cannot work or drive so I find things to do at home that occupy my time. This Blog was born out of the need to share my experience while providing ideas and recommendations to help others navigate the healthcare system safely.
Next week, I will detail the various healthcare professionals who cared for me and were there to assist me in every way. Understanding each professional’s role and how and when to access them is helpful.
If you have comments or questions, please leave them in the comment box. If you want to talk to me, please email me, and we can set up a time to talk, or you can reach me via email at allewellyn48@gmai.com
Thanks for visiting Nurse Advocate, and have a good week!
To summarize, here is information and a link to some of the tools and resources mentioned in this week’s blog:
 Binders: You can purchase a binder at any office supply store. If there are multiple hospitalizations, have a binder for each hospitalization or separate by date. The binder can fill up quickly, so buy a large one as they are easier to go through to find information. You may also want to buy dividers if multiple providers see the person. You can get inserts to hold X-ray discs so they remain with the appropriate doctor’s visit. Keep in mind that you are entitled to these records. You may need to pay something for copies and sign a consent form to release information, but having them will be important as you move through the continuum of care.
Asking Questions: Clarifying the care plan: As the patient and caregiver, don’t be afraid to ask any questions. It may be overwhelming to ask questions to doctors or other staff members who are busy, or you may feel intimidated. DON’T….they are in place to care for you, and your questions and concerns are important for them to address. I do recommend that you take the time to formulate your questions in advance of seeing them so that you are organized. Try and find out when the doctor will visit you. The team usually makes rounds at a set time if you are in a teaching hospital. Ask the nurse or resident when the team will be making rounds. If you are in a community hospital, call the doctor’s office and determine what time he is expected. In my
experience, the floor nurses usually don’t know this as their times change according to the office hours and workflow.
If you want to look things up online, ask for websites that would be good to visit. There is a lot of information on the internet, and a good deal of it might not pertain to you or maybe accurate.
Ask the nurse, doctors, or case managers for some sites that they recommend you to visit. They probably use the same websites, which are reliable, help them understand your diagnosis, and explain treatment options and tools. If you don’t understand the information, print it off so you can bring it to your visit. Also, ask the doctors or nurses for information on your condition. They may have printed information ready, which will save you time.
Caring Bridge: A Communication Tool: This site allows you to set up your own website to make posts on your plan of care, progress, or lack of progress. This helps to communicate information to a number of people at one time and allows well-wishers to communicate with the patient/family. Here is the link   www.caringbridge.org
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