Dealing With It

I saw this quote and it made me think of my sweetie.  6+ years and counting.  Some days tired, some days sad, some days scared, some days great.  Everyday dealing with it!!!  Keep dealing with it, Jon!  You're worth it!  We're worth it!!!  Love you more than you know...

"Dealing with it is the operative word.
I found myself at seven years not battling it.
Not struggling with it.
Not suffering from it.
Not breaking under the burden of it, but dealing with it."
- Michael J. Fox referring to his Parkinson's Disease
Barbara Walters interview, 20/20 December 4, 1998

Perspective

So much about life is perspective.  Perspective evolves...time, place, emotion playing a major role.  Jon and I have had many conversations about this, especially after spending time at Memorial Sloan Kettering Cancer Center.  Seeing people in wheelchairs, with IV poles, and masks covering their nose and mouth is part of the norm.  There are elderly and young, parents, siblings, spouses, children and more.  There is no discrimination.  It is a sobering experience.  We maintain perspective about how blessed we are when considering the journey of so many others.  However, our perspective sometimes stirs feelings of guilt.  Guilt because Jon is surviving.  Guilt because he had a tough day.  Guilt because we complained...  We alleviate that guilt by qualifying what we feel with phrases like, "I know it could be so much worse" or "There are other people who have a much tougher fight".  True?  Absolutely...  Maybe when we consider our perspective, we should do so without judgement.  At any given moment we may have the perspective that life is a  struggle.  The gift we give ourselves is to accept that perspective, knowing we won't stay in that place long.  No qualifications.  No self-recrimination.  A moment of perspective that will pass, replaced by another and another and another.    

In the Moment

Jon is a rock star!  He is ready to go!  Bring it on!  Well...let's revise that thought.  In his mind, Jon is ready to tackle the world.  HIs body, however, has a slightly different plan .  We tested his endurance today and, after visiting with a friend, making breakfast, showering and shaving, he crashed...flat down on the couch.  We had a good laugh as I reminded him he just had brain surgery a week ago!!!! Hello!!!!   Isn't it often true that we push ourselves beyond our limits to accomplish a goal, meet a deadline, prepare for what's next.  Sometimes that's a good thing, but sometimes it's important to slow down, breathe, appreciate the moment, be thankful, rejoice.  As you may know from reading earlier blogs, Jon hated chemo.  Quite honestly, it sucked.  We both know it's coming, maybe a week from now, maybe several weeks from now.  But...in this moment it is not a part of our lives.  In this moment we have short walks hand-in-hand, breakfast together and extra snuggle time.  We have each other.  So rather than looking ahead, anticipating, let's practice every day to be in the moment, rejoicing because it's a gift.  Let's open and appreciate that gift before it passes by.  It won't ever come our way again...

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!

Angels Among Us

See the picture to the left...that is my angel.  He does't have wings or a long white robe, but he has a halo of 46 staples encircling the right side of his head. And that smile...isn't it beautiful!  Each day Jon's glow grows just a little more; the smile is bigger, the eyes are brighter, the laugh is louder...  All these steps forward are because our angels allow us to focus on Jon's healing and recovery without worry.  They show up with dinner, help with the kids, send a card or text, cover for us at work, pray for us to have strength...the list is endless.  Our angels are many, near and far.  They may not have wings or long white robes either, but we know they are here among us.  Our angels are the anchors that hold us steady...they are the presence of God in our lives.

Ready For the Possibilities...

This year Jon and I will celebrate 16 years of marriage and 22 years of being a couple.  He has always amazed me...with his talent, kindness, faith, generosity...  and of course, humor!  Jon (who will soon reclaim this blog so I stop writing metaphors and sappy crap) was apparently cracking jokes throughout his surgery, which was possible because he was awake while they worked on his tumor.  One of the neurosurgeons said Jon's awake craniotomy was the most fun one he has ever done.  Somehow I am not surprised by this.  Jon's got a killer smile and can invigorate you with the warmth of his laugh.  That laugh is in short supply these days as he focuses on the business of recovering.    Someone told me today to be thankful for all the things Jon has, eyesight, mobility, speech...  Without a doubt we are thankful for those blessings and then some.  But it is important to recognize too, that the impact to our daily lives is significant.  That doesn't mean we have a pity party, but rather, we long for the days when playing catch in the backyard or a walk around the neighborhood isn't exhausting.  When family dinner at the table and sleeping in bed are the norm.  When Jon's laugh fills the house...  So today we continue to count our many blessings and embrace the emotions that accompany this process, without judgement and with the knowledge that tomorrow is a new day full of possibilities.

One Day At A Time...

Wouldn't it be nice if life turned out the way we want it to?  We could get what we want when we want?  The sun would always shine and the clouds be only providers of shade rather than darkness.  Unfortunately, that's not the case and despite all the blessings we have in life, there are days that just bring us down.   Jon is happy to be home, but as you may know, sometimes it's hard to be the patient and patient.  The reality is his brain surgery was less than a weak ago, so all the symptoms he is experiencing are typical; fatigue, weakness, loss of appetite, mood swings...  But, they aren't typical for Jon.  So here we are celebrating his homecoming, but recognizing that the hard work has really just begun.  Healing, patiently, without expectation.  Being strong without judging weakness. Accepting help without feeling needy.  And of course, knowing that all these things are temporary and soon, we will pay forward the love and support we are receiving.  For now, we will take it one day at a time...