Susan Geist Smith: Survivor of stage 4 mantle cell lymphoma

I’m not special. Many of us have been on this journey. Cancer is all around us, different types, different outcomes, but a word that puts fear into the hearts of all it touches. A cancer diagnosis does not make life un-certain, it just reminds us of the fact that no one has any more time than this moment right now.

I’m a speech clinician for special needs school children, so I know the anatomy of the mouth. In March, 2008, I felt a lump in the top of my mouth. I knew it wasn’t normal. Even so, I postponed my dental appointment until May. One look in my mouth and the dentist sent me to an oral surgeon who immediately took a biopsy. I waited five days for the report. Many of you have waited for such reports. I certainly did not have time for illness. We were moving from Angola to Elkhart in the summer. But on May 22nd the dentist said “We found cancer.” In a state of shock, I went home to tell Larry, my husband. We hugged and prayed. When I went to work the next day, I told my co-workers that “I knew my mouth would get me into trouble some day.” We laughed and cried, and many of my co-workers became my friends that day.

The next few weeks were a blur of blood tests, lymph node surgery, biopsies, and scans, prodding and probing. Finally on June 17th, my husband and I sat in a Ft. Wayne doctor’s office and heard the news, “You have stage 4 mantel cell Lymphoma and I want you in the hospital tomorrow.” “Wait, I said, my daughter is getting married in 3 days!” I didn’t feel sick, so I asked him, “What if I do nothing?” He looked me in the eye and said “I give you about six months without treatment.” So, on Saturday my daughter got married and on Tuesday I began my first round of inpatient chemotherapy. After five days in the hospital, I came home and immediately caught a cold. The on-call doctor told me that I needed to go back into the hospital because my white count was dangerously low. It was July 3rd and I did not want to go to the hospital! He was the eighth doctor I had seen in three weeks. In broken English he said “You not go the hospital, you sign paper you not sue me.” I went to the hospital, but decided that I needed to find new care as soon as we moved to Elkhart. I came to Goshen Center for Cancer Care because of its reputation for caring for the whole person, body, mind and spirit.

As planned we moved to Elkhart that summer, and for seven months I went in and out of Goshen Hospital. Five days inpatient, home for 17 days and then back again to complete eight rounds of chemotherapy. I talked, prayed and laughed with my nurses, and I typed. Thankfully, I felt good a lot of the time and that allowed me to create my internet blog www.JourneywithSus.com. This blog was and still is my journal of events and thoughts. By the end of August over 5,000 people had visited my site. That was humbling. People told me that the blog allowed them to understand what people with cancer went through.

I came to Goshen for care of the body, mind and spirit, and that is exactly what I got. Thank you Dr. Westbrook, nurses and staff. Your skill and the Grace of God are why I am alive today. I am now over two years into remission from mantel cell Lymphoma. My priorities have changed, but I am not perfect. I do think more about my purpose in life. Whatever you do, you are making a statement of priorities and purpose. This is true if you are tucking your child into bed or sitting in a room with another chemo patient.

I now have a sign that hangs over my desk at work: The world is not perfect, but I have chosen to look beyond the imperfection. I choose to live without regret or fear. None of us know what tomorrow will bring OR if we will have a tomorrow. The most consistent thing about life is change. It is what we do with our time that makes the difference. Live in the present, because the present is a gift.

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