"Help others who have this disease." Carl Berkowitz, Chronic Lymphocytic Leukemia Survivor
In the spring of 2010, I went to the emergency room with a severe pain in my right side, which turned out to be kidney stones. As an incidental finding, it was noted that I had an enlarged spleen and a high white blood cell count. This led to more tests that resulted in a diagnosis of chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL). My doctors told me not to stress too much because this was a 'good kind of cancer.' I tried not to worry but I was confused. I later learned that 'good cancers' are those that can be a non-issue for a number of years and for which there are multiple treatment options.
Despite my desire to start treatment right away I followed the advice of my physicians and started a 'watchful waiting' approach until symptoms became more obvious. This was the toughest part of dealing with my CLL diagnosis. My wife and I, like so many others, came to call this period 'watchful worrying.'
Later in the same year symptoms began to appear, and I started six rounds of chemotherapy. Each round consisted of three days of three chemotherapy drugs: fludarabine, cyclophosphamide and rituximab. I had an aggressive treatment plan because, other than the CLL, I was in such good health.
I experienced minimal discomfort during my treatment. I felt fatigued and had a change in my taste for food. The anti-nausea medications worked very well and the nurses treated me like royalty. The worst of the side effects was the slow return of my neutrophils; causing me to have limited infection fighting ability. During this time my wife learned to administer injections of Neupogen in order to reactivate my bone marrow.
Physical activity combined with a daily practice of mindfulness meditation and a sense of humor helped me get through all phases of the treatment. I decided during treatment that I would not let this disease define who I am. I've since gone back to the activities I enjoyed before CLL entered my life, including music, cross-country walks, bicycle touring and participating in 10K fun runs (it's hard to worry about CLL when you're just trying to get to the finish line!).
I wouldn’t wish cancer of any form on anybody but it does force a person to grow. For me, this growth occurred in two ways. First, by volunteering at the Tri-Cities Cancer Center I’ve seen firsthand the courage that many patients bring to their treatment sessions and the compassion that physicians, nurses, support staff and volunteers give to these patients every day. And secondly, I've found that the more I know about CLL the more I can volunteer and help others who are dealing with this diagnosis.
I strongly encourage other CLL patients, when they are able, to help others who have this disease, and also to educate themselves about CLL. The Lymphoma Research Foundation can provide written material and their educational workshops are a great way to quickly learn about all types of lymphomas, including CLL, while having the opportunity to talk with medical experts as well as other patients.