We all know the word percent.  We give a percent!  We are paid a percent.  We save a percent.  We spend a percent.  No percent has ever felt as important to me as the day my doctor told me that we are dealing with a percent.  I was sitting in Logan in late Summer of 2019 when I went for a second opinion because I felt off about my oral surgeon telling me to come back in six months, nothing to worry about.  I went to my favorite ENT that I had been working with for twenty years.  I went for the feeling of trust.  He told me that we want to watch my tongue close, because if tongue cancer comes back it is with a vengeance.  Once it’s spread there is only about a 30 percent chance of survival.  I never gave that number a second thought.  I had my trusted doctor on the case. 

The rug was jerked out from under me when it was back, less than three months later.  I was in awe and couldn’t believe that it was happening.  At first, the doctors could not find an answer of why the lymph nodes in my neck were golf ball size.  I knew why!  I knew that the cancer was back and that was why I had been prompted to seek out a second opinion.  I sat with my doctor and said I am not leaving until we figure this out.  It was figured out within that week and I worked with my ENT for the surgeries.  When it was time to start a long term treatment I switched facilities.  I needed one that was closer to family and also I was drawn to seek out the best facility.  A team who specializes in only cancer.  

I worked with another doctor at a more specialized facility.  He was amazing.  We hit it off right away!  When the time came that things were tough and I dared ask the percent question again, he told me that the percent doesn’t matter to a girl with my personality.  “It’s the folks like you,” he said, “that are making it.”  Imagine my sadness when he retired in the middle of treatment.   As a stage four tongue cancer patient that has had many surgeries, I have a 5% chance of making it.  My head and neck doctor laid it to me straight, because I asked.  I’m not sure that I will ever ask again! I am here to tell you, however, that I signed up for the making it column.  In my mind it’s like a column of survivors.  It has my name written there, plain as day! My new oncologist talked to me after I found this out, and it wasn’t that the doctor talked to me unkindly, but it was without belief in my ability to survive. Read that again!  The doctor talked to me without the belief that I would survive.  I was pissed!  I couldn’t believe that she didn’t have as much faith in me as I did.  I wasn’t sure that I would be able to go back to her, and yet….she was the best the Huntsman has.  I needed her.  I needed her to believe in me.  I was ticked that she didn’t automatically know what I needed.  I went home and thought about the conversation many times.  I needed to decide what to do!  I was sick inside.  I could not hear that kind of talk every week while I went through more treatment.  I couldn’t hear it every three weeks when I got back on maintenance.  I needed to talk to her.  Luckily my next appointment was with the PA.  She gave me the best advice.  She said to  talk to the doctor and tell her what I need.  She indicated that every patient needs a different outlook and she simply needs to know what I am thinking.  

I went back with my heart intent on being my own advocate.  I explained to the doctor that I am the five percent.  I am the girl you read about.  I am the one that is going to be here to teach the world what the five percent looks like.  She told me that there isn’t anyone this far (measured by stage in my perception) into head and neck cancer at their facility.  I explained to her that now there is.  I am that girl.  I will be the face of her five percent.  My doctor and I had a hard conversation that day.  As a patient, it is hard to tell your doctor how it is going to be and how you need them to talk to you.  I needed her to believe in me.  I needed her to know that my entire life I have been beating the odds.  This battle is not a problem for someone like me.  I signed myself up for the five percent.