Roller Coaster

One week ago today, Jon had his second craniotomy.  As we move forward in his recovery and prepare for chemo, I started thinking about the roller coaster we have been on since I heard the words "Your husband has a mass in his brain".  Jon didn't know.  He was still in the MRI.  I told him.  I told our families, friends, coworkers, insurance companies, doctors...over and over, "Jon has a mass in his brain."  Our daughter was five, our son was two.  A week later, in a little conference room at Memorial Sloan Kettering Cancer Center we waited for the neurosurgeon to update us after Jon's surgery.  I hated that room.  It was small and stifling.  Once the doctor spoke to us, I cried.  I didn't feel relieved, I felt depleted.   I will never forget those moments, just like I will never forget two and half years later when the oncologist said the tumor grew and it was time to start twelve months of chemo.  More tears, more phone calls.  Feeding him chemo pills and anti nausea meds.   Searching for foods he could stomach.  Picking up shattered pill bottles when he smashed them with a bat after his final round.  A victory!!!  Then, a shrunken tumor and eight blissful, months of no seizures.  Some days went by without us even thinking about the tumor (we actually had a conversation about it).  In an instant that changed.  Jon could barely get the words out, "I had a seizure".  He cried.  I cried.  We knew.  This past September's MRI confirmed new growth on the tumor and the next several months were spent watching and waiting.  Maybe that's why we felt such relief when we could finally act.  Maybe that's why this second surgery was a blessing.  Action gives us a sense of control over the uncontrollable.  And everything about this brain tumor is uncontrollable.  A friend said an interesting thing to me earlier this week after Jon's surgery.  "Not everyone understands that the hard work happens when you get home.  They go back to their lives and you continue to live this battle."  She was right...We are our truest selves at home, safe and secure, hidden from others.  We put our best foot forward when working, playing, socializing.  The tough stuff happens behind closed doors.  Fear, anger, sadness, guilt... Jon and I both feel those things.  We also feel joy, love, hope, determination...  So yes, this is a roller coaster and yes, some days it is hard.  There are many things I wish I could change, but I know for sure, I would never want to ride this roller coaster with anyone else but Jon.  When he is low I hold him and when I am low, he holds me.  We laugh together, cry together and fight together.  We said "For better or worse, in sickness and in health" on July 31st, 1999.  We have been tested, we have persevered and we will continue to ride this roller coaster together, hand in hand for eternity.  Put your seatbelt on...it's going to be a bumpy ride!