Brian Koffman suggested that I write about my CLL experience from my perspective as a nurse. Even I am stunned by how long it took to get myself out of denial! Like most CLL patients, my diagnosis came as a complete surprise. I had been experiencing increasing amounts of fatigue for a seven-year period prior to diagnosis. I have always been a fan of the “Ignore it and it will go away” philosophy. When the fatigue started at age 52, I knew that it was not normal, but I shrugged it off and took a nap! After several years, I told myself that if it was anything serious I would be dead by now. As a nurse I am not emotionally equipped to be a patient. In the healthcare world, nurses and patients are two entirely separate groups and I was obviously not in the patient group. Let me give you an example of my difficulty playing the role of patient.
When I was hospitalized for surgery at age 28, I was given a clear liquids dinner tray the day of surgery. Despite saying “No thank you”, I was encouraged to try it. After sampling the broth and Jello and finding them unfit for human consumption, my husband persuaded me to drink the grape juice. Several hours later, I woke up with overwhelming nausea and was unable to find the emesis basin. Realizing that I was about to vomit on my pillow I pulled it out of the way. I can still remember looking at the puddle of purple puke on the bottom sheet and thinking “I’m too tired to change the bed.” I plopped the pillow over the purple puddle and promptly went back to sleep. Did it occur to me to call the nurse? Of course not because I was the nurse!
When a new doctor took over our Primary Care Practice, I had to fill out new paperwork. Whilst filling out a detailed medical history, I decided that it was time to address what was now a six-year history of fatigue. All the lab test he ordered were normal other than an elevated WBC and a positive Epstein Barr Virus test. I was incorrectly diagnosed with an active Epstein Barr infection. A year later I woke up to discover that the inner aspects of both arms were covered in petechiae. Being a nurse proved helpful as I was able to spell petechiae for the doctor’s receptionist when I called for an appointment. More tests followed and showed that my WBC was 2,000 higher than the previous year. My PCP also found my axillary lymph nodes to be enlarged. He said that he was referring me to a specialist. At this point I asked if I could have a copy of my CBC so that I could call my nephew who is a Hematologist/Oncologist. The reply was “Yes that’s a good idea. I’m referring you to a Hematologist/Oncologist.” As I was driving out of the parking lot I asked myself “Why do I have an elevated WBC and enlarged lymph nodes and why is he referring me to a Hematologist/Oncologist?” Then the proverbial penny dropped and I thought “He thinks I’ve got leukemia!”
Naturally I took the most logical approach and did a Google search which enabled me to diagnose myself with Stage 1 CLL. I told myself to calm down as it was impossible to have had cancer for several years without being aware of it. Wasn’t it? After reading the information again, I decided that I was right the first time. That evening I called my nephew Dr. Rick. Initially, he told me that he couldn’t diagnose me over the phone. I pointed out that I had managed to diagnose myself over the Internet! He reluctantly agreed that it sounded like CLL.
At my first appointment with my oncologist, I told him about my Internet diagnosis and telephone consultation with Dr. Rick. After completing his examination he said, “Well I agree with your diagnosis.” For the next few months, I focused on congratulating myself on my diagnostic skills, instead of on the actual diagnosis. Then I progressed to telling myself that as I would never need treatment I had cancer in name only.
Two years after diagnosis there wasn’t much change other than some visibly enlarged lymph nodes in my neck and a slowly rising WBC. My oncologist started to push me to have treatment. Neither I nor my nephew felt that it was necessary based on the guidelines from an International Workshop on CLL published in Blood Journal in 2008. I sought a second opinion from another oncologist who felt that treatment was not necessary at this point. Obviously he was a smart guy! He did tell me that I would need treatment at some point. Despite thinking that he was mistaken about this, I accepted his offer to take over my care.
During the following year the lymph nodes in my neck continued to increase in size. When I was out for a walk they could be seen on my shadow. I could not wear dangling earrings as they rested on my lymph nodes instead of dangling. This was the first time that my CLL had caused me any problems other the fatigue. Fortunately this problem was easily solved by wearing different earrings. Unfortunately these lymph nodes chose the day before an oncology appointment to have their final growth spurt. My oncologist took one look at me and said, “We need to talk about treatment.” CT scans revealed that I had enlarged lymph nodes throughout my body, including some “pretty chunky” ones in my abdomen and an enlarged spleen. My WBC was only 23,000 presumably because most of my CLL cells were in my lymph nodes.
I emailed an update to Dr. Rick and asked if he thought I really needed treatment. This prompted an exasperated phone call from him telling me that my oncologist was right! My oncologist recommended treatment with Rituxan and Treanda. Dr. Rick recommended Rituxan monotherapy and I chose this option. In January 2010, I started a 4-dose course of Rituxan. I had a bad reaction to the first dose, including a severe headache that was not relieved by prescription migraine medication. The next day it was just as bad and I thought “There’s nothing like a trip to the Chemo Suite to convince a person that they’ve got cancer.” My days of denial were finally over!
I got unusually good results from the Rituxan, including normal size lymph nodes in my neck and my CBC remained normal for 15 months. When I relapsed, my WBC increased at a snail’s pace. Unfortunately my fatigue became so bad that I could barely function. Therefore six years after my initial treatment, I completed another 4 doses of Rituxan in February 2016. My CBC is still normal and although my energy level is not as good as I would like, it is much improved.
I was born in England in 1947. I graduated as a RN and Nurse Midwife before going to work in Bermuda where I met my American husband. We have been in Florida since 1976. I took early retirement in 1997 after a 21 year career here as an RN.
Originally published in The CLL Tribune Q1 2018.