Day #1: The Diagnosis

It was a sweltering hot summer day.  August 19, 2013 to be exact.  I was working diligently in my first grade classroom.  Setting up and organizing for the start of the upcoming school year.  New supplies.  New materials.  New kiddos.  A very exciting time in a teacher’s life.  What I didn't know on that sticky Monday, was that my life was about to change.  Forever.

The stitches in my head were itching like crazy while I worked.  For the most part I ignored them.  But every now and again, I had to sneak in a scratch.  It was then that I discovered the "tumor" that was supposed to be removed, the growth that had hurt and revealed itself to me, was still in fact on the top of my head?!  I was confused as to why I had stitches and an incision site... yet the culprit still presented itself as being in the same exact spot.  It would have to wait till my days work was finished.  I was knee deep in jungle theme decor, and was bound and determined to get the bulk of it up on the bulletin boards that day.

Just before 4 pm, I pulled into the parking lot.  I did not have an appointment to see the doctor.  It was my intention to catch him off guard and ask just what the hell went on in the operating room that day.  The nurse placed me in his room and he soon entered.  I will never forget the look on his face.  I could tell there was something more.  I began raising my voice to him, pointing to my scalp, and insisting on knowing why on Earth there was still a painful bump located on the top of my head??!!

Immediately he approached me, paper in hand.  He babbled something about the reports being "hot off the fax machine." And then I heard it.  The “C” word.  The one I was not expecting, whatsoever.  It felt equivalent to a punch in the face. I looked down and saw the verdict there, plain as day, in black and white print.  At that moment I felt as if the words were being displayed through a magnifying glass:  "ADENOID CYSTIC CARCINOMA."

Everything went black.  I'm sure it was only for a moment, but it felt like an hour.  My ears were boiling with heat.  My face flushed.  Tears were dropping onto my lap.  Did this really just happen?  He immediately escorted me out of the room to the receptionist.  I was sobbing hysterically.  People were watching me.  He told her to get me the information for the closest Cancer Institute.  I went numb and could not move or breathe.  She felt my pain.  I could see it in her pity.  She told me to leave, that she would have the hospital contact me so that I didn't have to stand there in shock any longer.  Time stood still.  That same feeling you get the moment your children are born.  Only on this day, it was not welcomed.

I walked to my car in the parking lot.  I don’t know how I managed.  My legs were weightless.  I couldn’t feel anything.   I can only remember hearing the sound of my sobs ringing in my head.  I shuffled to find the keys and opened to the door to sit.  I took several very deep breaths, as I truly believed I was going to hyperventilate.  I hated the feeling of being so alone in that moment.  Nobody to hold me up.  Nobody to rub my back or help blot my tears.  Nobody to say I would get through this.  I searched frantically for my cell phone.   I dialed my best friend.  She is an experienced nurse and could naturally give me the words I needed.   I could barely get the word “cancer” out of my mouth.  She couldn’t understand me through the bawling and tears.  And when she did, she was far too in shock to react the way I needed her to.  I hung up and called my husband.  He reacted with the same disbelief in his voice.  “What do you mean?  Are you sure?  Who told you this?” 

I did a hard wipe across my face and eyes into my sleeves, and turned the key to start the car.  Thankfully, I was exactly one mile down the street from my home.  In retrospect, I was driving while impaired.  Impaired by a possible death sentence.  One that would not let the tears stop, even for a second.  I couldn’t see straight and I didn’t care.  I just wanted to be home with the people I love.  At that time, on that Monday afternoon, it was just my two daughters, 11 &15.  My husband was away with work. 

I am certain they were scared to death as they saw me falling apart before their very eyes.  I kept saying it out loud, over and over again.... “I have cancer.  I have cancer!”  While most parents might take the time to deal with this privately and compose themselves, I am not most parents.  I am a ball of emotions and have spent my entire life displaying them.  Today would be no different.  I felt impending doom, and those poor daughters of mine did as well.

How could this be happening?  How could it be cancer?  Yes, I just had a tumor removed.  But the same doctor had removed 3 previous tumors from that exact location over the past several years.  Each time pathology came back as “benign cylindroma.”  A translation my doctor told me we don’t need to worry about.  A crazy fluke.  I never worried once.  The symptoms and timing were precisely like the last ones, so what made it cancer THIS time?  Time would reveal it was cancer all along.  A misdiagnosis.

The hours that followed involved tedious internet searching.  I say tedious, because if you type in the words, “adenoid cystic carcinoma,” you are not going to like what you find.  Words like “rare,” aggressive,” and “unknown’ will be the first you’ll stumble across.  It is considered a glandular cancer, so why did it choose to grow on my head, underneath the layers of my skin?  Of the billions of hits the word “cancer “could bring up, I could find minimal information on my diagnosis.  Even worse, I could locate only ONE other case of this cancer being found in the scalp. My feeling of impending doom went to heightened levels.