Elizabeth Naylor's Lymphoma Story

My diagnosis of Non-Hodgkin’s Lymphoma came two years ago. I was 30 and "otherwise healthy". I was a mother to a two year old daughter , a wife, a sister, a daughter, a friend, a middle school teacher. I loved to read, to play on the beach, to ride my bike. I watched Law and Order re-runs and occasionally the news. In short, I was a normal 30 year old living a pretty normal life.
In August, I went to my doctor because of a nagging cough and some chest pain.  I was certain that I simply needed some antibiotics.  One week later I was having a CT scan to find out what the “something” was that had appeared on an x-ray. Never in a million years did I expect a cancer diagnosis.

On October 16th, I was diagnosed at with Primary Mediastinal Diffuse Large B-Cell Lymphoma, one of the many variations of Non-Hodgkin’s Lymphoma. I had a softball sized tumor just to the right of the center of my chest. At this time the tumor had begun to push through my chest wall and although it wasn’t all that visible to others I knew it was there and can’t say I loved the everyday reminder.  Eventually, this tumor would become much larger and very visible to others.

Four days after diagnosis, I began my first type of chemotherapy. The doctor explained that this particular chemotherapy was effective in 95% of patients and given my general health and age it was assumed by all that I would undergo 6 rounds of this chemo, some radiation, and by April 2010 would be on vacation with my family to celebrate my health and recovery. However, after only two rounds it was clear that it wasn’t working and I moved from the 95% to the 5% category. One of the great many things that I have learned from cancer is never to assume, expect the unexpected and then deal with what comes.

In November I started a second type of chemotherapy, this one requiring 4 day inpatient hospital stays. The plan was that I would do four rounds and then radiation and likely an autologous stem cell transplant. No such luck. Two rounds in and I was clearly worse. It was a Friday that we learned this and were exploring next steps with my oncologist. On the following Tuesday, with the blessing and great understanding of my oncologist at home, my husband and I went to The National Institute of Health to learn about an experimental protocol that the Lymphoma team there believed would help me.

I began my third type of chemotherapy at the end of that week. This chemo required 72 hours of continuous treatment as well as several more hours of other drugs to make up the whole cocktail. We travelled to and from Bethesda three times for this chemotherapy and on the third trip discovered that not only was my tumor virtually the same size but now I also had a tumor in my kidney. Things had gone from very bad to almost hopeless.

It was now March of 2010 and my Lymphoma team was strongly recommending an allogenic stem cell transplant as my best option. The National Institute of Health had an experimental transplant protocol that I fit into but we were also encouraged to talk with my oncologist at home. The conversation with him basically gave us the following information: We are willing to try the standard transplant if you want but we think you will die anyway.  This information made it quite easy to decide to participate in the experimental protocol at the National Institute of Health. This was a major turning point for us. My family and I moved to Bethesda where we knew we would stay for at least 100 days.

April 6^th, 2010 was one of the scariest days of my life but it was also rather anti-climactic. My sister had been previously confirmed as a full match for me, something for which I will always be grateful. Many people needing a transplant never find a match or have to move forward with a partial or non-familial match.

I spent much of the day simply waiting.  My sister spent the morning donating loads of wonderful stem cells and then we waited while the cells were tested and counted and finally in the late afternoon a batch was brought to my room. The transplant itself went like this: a small bag, sort of like a sandwich bag filled with what looked like tomato soup was hooked to my IV. We waited about 15 minutes for gravity to complete its work and then I was done. Pretty anti-climactic!

Now we began to count days, waiting to get to day +100. I was out of the hospital on day +9 and although went in and out of inpatient a few times during the 100 days, by and large I continued to improve. It turns out my sister, has a ridiculously strong immune system that did not like my tumors one bit!  I am now 19 months post transplant with no sign of cancer activity in my body. So, here I am a cancer survivor. Many have said I am a miracle.

http://www.cancergaveme2birthdays.blogspot.com/