My Story
On March 30th 2009 I went to a doctor because I was having trouble breathing. My usual doctor was on leave for a knee replacement so I had to see another doctor at the same practice. This doctor didn’t know my history and just assumed it was my asthma. I was given steroids and a new inhaler and told to come back in a couple weeks. I left the office knowing this wasn’t right.
I phoned Maria, my wife, told her what the doctor said and that I didn’t think he was right. She contacted a friend who was a nurse at an urgent care facility and got me an appointment. I explained to the new doctor what the other had said and why I didn’t think he was right. They took a chest x-ray right there at the urgent care facility. The doctor showed me how on the x-ray half of one lung wasn’t visible. He gave me the x-ray and told me to go straight to the emergency room. To move the story along at 10:31pm the ER doctor used the sentence, “ I am afraid you have cancer.” That night they pumped 2 liters of fluid from my chest and admitted me to the hospital. The next day another 1 1/2 liters of fluid was pumped from my chest as they “stabilized” me.
You may think a kind of panic or horror sets in during an event like this but for me I felt a sense of relief. Relief because I found out I wasn’t just getting old but there was something I could fix. I could get better. In the following days I met my oncologist and he explained to me what it meant to have Stage 4 Follicular Lymphoma. He told me I had a choice of quality or quantity of life. At this point my daughter was in 2nd grade and my son in Kindergarten. I told him I wanted to see them graduate high school. I don’t remember his exact words but there was no promise just a, we’ll see what we can do, kind of answer.
That was the beginning of my adventure. A diagnosis in the ER followed by 8 rounds of RCHOP chemo followed by about 630 days of remission before I was diagnosed again with Stage 4 Follicular Lymphoma. This time the big hammer of a stem cell transplant was used. An experience unlike any other. This was followed again by about 630 days of NED, No Evidence of Disease, before it showed itself again. This time just stage 1. We used chemo and a little radiation on this round. Somewhere around 630 days it showed up again. This time we hit it with a new immunotherapy. Immunotherapy is far easier than conventional chemo and can be given as a maintenance drug as well. All of that and some Watch and Wait and that is how we get to 14 years the end of this March.
Although it has not been easy I feel very lucky.
