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A Profile of Hope: John's Story

In John's own words

From the middle of 1996 through July of 1997, I started having illnesses that I could not get over, including having pneumonia three times in one year. I also missed 10-12 days of work, which was unusual for me because I hadn't taken one sick day before that. Also during that time, for a total of about 30 days, I came to work but was not feeling well. After being tested for many conditions, my doctor and I realized there had to be some kind of underlying illness. I thought, "There must be something major wrong with me; this is just not right," and I was thinking, "It must be cancer."

In July of 1997, three weeks after my doctor ordered a biopsy of an enlarged lymph node, I was diagnosed with a B-cell non-Hodgkin lymphoma called small lymphocytic lymphoma or SLL. Upon hearing my diagnosis, my feeling was "I need to get into treatment right away and figure out what we're going to do to move forward and get this taken care of." I was surprised at how difficult it was to diagnose the disease. I was forty years old when I was diagnosed, and it changed my life. It was difficult facing a disease that's life-affecting, thinking it was the thing that was going to eventually end my life.

Within five minutes of walking out of the doctor's office, I called my wife to tell her about my diagnosis. That evening my wife and I sat down with our four sons (who were ages six, eight, ten, and twelve at the time) and explained what was going on. We told them we have to move forward with treatment and take life as it comes.

Based on how the disease had already affected my immune system over the past year, the doctors highly recommended the standard treatment at that time, which was combination therapy with Cytoxan, vincristine, with prednisone. My doctor confidently said, "You are going to go through treatment, and chances are you are going to go into a period when the cancer is dormant or quiet, and then it will probably come back and then we will look at other treatment options. This cycle will probably go on for quite some time."

In August of 1997, I started chemotherapy. I was in a large room with other patients also receiving chemotherapy, and I always felt that I was the healthiest person in the room. That was a positive feeling for me, because you realize how serious cancer is and how your health could go downhill anytime or you could struggle with the treatments. I never had any serious side effects back then. Having four kids there were lots of sports and school activities to attend. Juggling those activities with my wife distracted me from my illness. I also continued to work out during treatment, other than the day of chemotherapy and the day after, which I think was part of the reason that I went through treatment successfully.

After 1997, I had two recurrences — one in 1999 and one in 2000. A general thought with this cancer is if you are healthy for five years, it may be behind you. After ten healthy years, in early 2012, I got a cold that I could not kick; the cancer had come back in another form — chronic lymphocytic leukemia or CLL.

In May of 2012 I received chemotherapy with rituximab (Rituxan). It was really interesting to see how treatments and procedures had changed in fifteen years. Among the other patients, I still felt that I was the healthiest person in the room. Because I was fifteen years older than the last time, the treatment definitely affected me a lot more. It really gave me a new appreciation for how much more difficult it gets to go through the treatment process as we age.

Within the first five years of my diagnosis, I was contacted by the Lymphoma Research Foundation (LRF) and asked to participate in the Buddy System where I was partnered with newly diagnosed patients, and I have been in contact with many different buddies over the past twelve years. I really feel like I get as much back or more than I give out. I first discovered LRF within a couple days of diagnosis when I found the LRF website. The website contains many sources of information, and I found that I could get a lot of information in one place or be directed to other useful information from the site. I attended very helpful webinars on the LRF site, some relaying patient stories and some providing information on current medical research. LRF is high on my charities list because it is something that is very important to me; and I feel they are doing important and useful work. I received a lot of useful information from people that I also relayed to other patients. For example, it's helpful to bring a notebook to doctor visits so you can write down what the doctor says. It is also helpful to write down any thoughts you have between visits that you want to discuss with your doctor. I found using a notebook was helpful because it is difficult to remember all the things you want to discuss and everything your doctor says during your visit.

It is important to know everything you can about your condition. Remember, your doctor is not the one who gave you cancer, but he is the one telling you about it. So do not be mad at the medical profession or your caregivers. Once you know what has been affecting your life, you need to figure out the best way to move on and get past the shock. Just try to have a positive attitude. I'm a very positive person and I think that really helped me through this whole thing. I really make sure that I appreciate each day, enjoy what I'm doing, and enjoy life.

To submit your own story of hope, please contact Sam Rogers at srogers@lymphoma.org.