Lesson 1: Learn the Vocabulary

The doctors and nurses were using words I could not understand.  It was September 19, 1998.  I was in the emergency room of a large hospital in Falls Church, Virginia.  “I’m sorry, Mr. and Mrs. Russell, but your daughter has a brain tumor.”  It was the first time in my life that I fainted.  When they revived me, my head was spinning, my heart was pounding and I was nauseous.  How can a parent begin to comprehend that their child has cancer?

I was plunged into a universe that had always been far, far away.  The mysterious vocabulary words kept coming at us.  “We can try radiation up front.”  “Chemotherapy doesn’t penetrate the blood-brain barrier.”  “It might be a diffuse pontine brainstem glioma.”  Doctors assume you know what they are talking about even though your world in that instant changed forever.  I realized I had better educate myself and fast.

I’ve learned a lot in the last ten years.  One of the first things I tell a newly diagnosed cancer patient is to “learn the vocabulary of your illness.”  Learn to communicate effectively with your medical team and the others involved in your care.  Never assume the members of your team are actually talking to each other.  It is your job to make sure that nothing falls through the cracks because if you don’t do it, no one will.  Take names and take notes.  Try to bring along a companion to help because it is hard to concentrate when the news is complicated and difficult.  Ask questions and keep asking until you get answers in words you can understand.   Learn the language of your disease.  As awful as they are, it’s easier when the words aren’t foreign anymore.