"This is a marathon, not a sprint." Tom Lakritz, Chronic Lymphocytic Leukemia Survivor
I was diagnosed with chronic lymphocytic leukemia (CLL) in 2005, but I’d actually been feeling ill for about 18 months. I kept going to the doctor, and they couldn’t find anything wrong with me. Then I developed pain in my abdomen, and my doctor thought I had gallstones. I was pretty certain that I didn’t, but she was certain I did so I had an ultrasound, which didn’t show anything. I then had a computerized axial tomography (CAT) scan that showed I didn’t have any gallstones, but it showed that I had enlarged lymph nodes.
My doctor was still convinced I had something wrong with my gallbladder; so, I had this other test called a hydroxy iminodiacetic acid (HIDA) scan, which showed that I didn’t have any problems with my gallbladder. I had CAT scans every four months for a year that showed that I had enlarged lymph nodes,but my counts were all fine and I wasn’t feeling sick. Then in September, a lymph node appeared in my neck. My doctor suggested that I have a needle biopsy, and that is how I was diagnosed with CLL. It was still a few weeks after the needle biopsy until I developed any common symptoms of CLL: massive night sweats, fevers, weight loss, and increased counts.
I was surprised because I had gone in to get the needle biopsy on a Thursday, and my doctor called me the following Monday to tell me my diagnosis. I was very shocked but also somewhat relieved because I knew for about a year to 18 months that there was something wrong that we couldn’t figure out. My doctor told me to come to his office when I could and later that day when I saw my doctor, he had already spoken to an oncologist and had a list of things for me to do, which included more scans and more blood work, and they wanted to take out the lymph node on my neck to do a biopsy. My partner and I talked about the whole assessment and possible treatment plans with my doctor. I saw the surgeon on Tuesday, had the surgery on Friday, and had all my scans the following week. Within a matter of weeks, I saw the oncologist. Because I was and still am relatively young as far as CLL patients go, I chose what was at the time the most aggressive treatment because this could give me the longest possible remission.
When I was first diagnosed, I did Google searches and found a lot of information, although most of the information was unfiltered and not helpful. Hoping to get better information, I went on to government sites like www.cancer.gov, and then one of my brothers actually told me about the Lymphoma Research Foundation (LRF). I went to the LRF website and started to learn about the organization and what it has to offer. I learned that LRF has an Educational Forum every year in the fall, so my partner and I attended our first one in the fall of 2006 and have attended every year since. They are great and through attending these educational forms, I found that there’s a CLL expert at the University of California, so although I get my treatments by a local oncologist in San Francisco, every six months I go down to the University of California in San Diego to see a CLL expert that we met at one of the educational forums. I have attended three of the Ask the Doctor programs as well. I think it’s very important that we educate ourselves because this is a marathon, not a sprint.