Friday, January 27, 2012

Life Lesson

Have you ever met someone that made you want to be a better person?  Not in the change the world kind of way.  But in the change your own world kind of way?

Susan Niebur has done that for me.  I don't know Susan, although she lives in the same town and goes to the same Church (OK-I haven't gone to Church since Will's Christening but if I did it would be the same Church).  But last night, I joined the hundredes or thousands or maybe more individuals that she has shared her life with.

Susan is a professionally accomplished mom of two young boys (4&6) who has been battling inflammatory breast cancer which has metastasized to her bones.  The disease is taking it's toll - and, well - the story is still being written.  Her story (her life) really hit too close to home (literally and figuratively).  

Susan writes about the disease, the bad and the ugly on her blog Toddler Planet.  She sheds light on the gruesome struggle she has and is facing.   But she also writes about the moments, the every day moments.  The little moments that bring joy to a life that others might only see as tragic.  She writes about raising two young boys.  She writes about her hopes and dreams and the fears that she may never get to live those dreams.  She faces her mortality with grace and courage that I could only wish to have one day.

Susan is another reason I so hate this disease.  It is not fair.  It doesn't care that Susan has two baby boys.  Two boys not much older than mine.  It doesn't care that she is brilliant and has contributed to the body of scientific research.  It doesn't care that she is a friend to many, a mom to two and a wife to one.  It doesn't care that her words are a gift that she has generously and gracefully shared with us all.  Breast Cancer just doesn't care. 

Her blog left me emotionally drained.  It broke my heart and touched my soul.

As I read blog post after blog post last night I realized that I may be tired because Will won't sleep, and I may be frustrated because Sam won't eat a damn thing I make him for dinner, and I may be unhappy with my current job, and I may be uninspired by what I planned to make for dinner, and I may feel like there aren't enough hours in the day BUT tomorrow that could all be taken away.  Would I rather remember the exhaustion and frustration or would I rather remember the unexpected hug from Sam or the wave from Will, or seeing the two of them develop the bonds of brotherhood, or celebrating small moments over a bottle of champagne with Matt.

Last night Susan taught me that in the end it's the little moments that get you through the day.  It's the little moments that make tomorrow worth fighting for.  It's the little moments that are the difference between tragedy and grace.

Monday, January 16, 2012

Another Milestone

Today I did something most women my age have not done . . . I had my first mammogram. 

Because my mom was diagnosed at 47 doctors had long recommended that I start early screenings at the age of 30.  When her breast cancer metastasized the doctors insisted upon it.   However, I have been pregnant or breastfeeding for the last two years and this is the first week since my 30th birthday that I was allowed to be screened.  I made the first appointment available. 

Since I am one of the first of my friends to have a mammogram let me demystify it for you.  It's NO BIG DEAL.  After a long (very long) wait in the radiology waiting room I was called into the back.  Asked to change out of my shirt and bra and put on a hospital gown.  I was taken into a room where I stood in front of a large machine with two plates.  The technician positioned each breast, one at a time, between the plates -- squeezed and took a 3 second image.  She reangled the machine to get a cross-section image and repeated.  There was no pain.  There was barely enough time for discomfort to register.   She sent me to go change back into my clothes and off I went

A couple years ago I would have been embarrassed, modest.  But let's be honest - after two children all modesty is gone and more people have probably seen my breasts than I care to aknowldege.

The actual mammogram was the easy part.  Now comes the hard part.  Waiting to get the all clear from the radiologist. 

I have a fear -- actually I don't think that is the right word.  I have a feeling that I will, one day, face breast cancer.  Maybe it is my anxious tendencies, but deep down, I feel this is a battle I will face.  So while some women may go into their screenings with the expectation of getting an "all clear" I went into today's screening with the expectation of their being a problem.  This is why my mom hated it -- I'm sure.  This is why she put off her mammograms.  The fear that something would be amiss.

All that being said, early detection is what gave my mom the chance to live many years after her first diagnosis.  So unlike my mom, every year I will make an appointment for my yearly mammogram at the first opportunity because every second counts in the fight for your life!

Thursday, January 12, 2012

My Mom's battle - My War

Tuesday night, my teammates girlfriends and I attended the Susan G. Komen 3 Day Get started meeting. I think we all walked away moved and energized by our mission to make a difference in the fight against breast cancer.  Committed to waging war against this enemy!  I also walked away, having heard the very personal stories of women battling for their life and those that lost.  One particular story so closely mirrored my mom's that I almost lost my breath.  As I listened to the story of this mom's struggle I was moved to tell my own mom's story.  

A warning to close friends and family -- this may be tough to read.  It was torture to write.

This story does not have a happy ending.

In early 2001 as I was getting ready to complete my final year of College I got a call from my mom.  I don't remember the words she said.  I only heard breast cancer.  I can still feel the lump in my stomach.  I can still feel the panic rising.  I know she comforted me -- because that's what mom's do -- they make you believe that everything is going to be alright even when they face fear and uncertainty.  They give you what strength and courage they have to carry you forward.  My mom was 47.

The doctors moved quickly scheduling a lumpectomy.  The date was set.  It happened to be smack dab in the middle of my spring break.  A trip planned with my new boyfriend (now husband) to Disney World.  I wanted to cancel.  She insisted I go.  A mom -- encouraging me to move forward with my life even when she is facing a threat to hers.

I went on the trip.  Matt will tell you I was a mess.  Anxiety and nerves and guilt and fear.  I couldn't have been very fun to be around.  I can still tell you exactly where I was standing when my mom got out of surgery.  My cell phone (it was a rather large contraption in 2001) rang while I was standing at the stairs leading up into the overhang for Big Thunder Mountain.  Reception was bad -- we let the line pass us by so I could talk to my dad.  The news -- mom was out of surgery.  It went well.  Looks like they got it all.




Chemo, radiation and years of hormone therapy followed.  Her hair thinned.  She went into early menopause.  She hated how tired she was, how sick the treatments made her.  But she looked that big ugly beast cancer square in the eye and she beat it.  She repeated "I think I can."  She told the cancer she hated it.  She told the cancer she was stronger than it -- strong like bull. She told the cancer she had more to do.  She told the cancer she was in control of her life!  Through it all she was brave, she was strong, she remained the center of our family.  She remained the unwavering friend.  She became my hero!

In 2006 she celebrated her 5 year survival date.  I began to breathe easier.  Not worried that cancer would jump out from its hiding spot.  She hated her yearly mammogram.  I think she skipped a few -- the fear of the other shoe dropping would get the better of her.  But year after year, they would come back clear.

In 2009 my mom fell ill shortly after the New Year with what appeared to be a nasty flu.  It knocked her down for weeks.  After numerous visits to the Dr. and finally an admission to the hospital she was getting a full work up.  Her liver enzymes were out of whack which led to an ultrasound and a diagnosis of severe cirrhosis of the liver.  More tests and a biopsy.  A call from my mom telling me it was cancer.  Metastatic disease.  Her breast cancer had metastasized to her liver.  I fell apart.  She put me back together.  A mom!

The oncologist was optimistic.  Gave her and me hope.  Talked about a long life.  Multiple rounds of chemo and tests followed.  I made appointments with John's Hopkins and Sloan Kettering.  Appointments my mom would never make.  Less than three months later my mom was admitted to the hospital. Unresponsive.  Her liver was failing.  We were aggressive with her meds which brought her back to us for a few short days.  Days my family and I lived in the hospital breaking every hospital protocol.  Days where her friends and family put life aside to spend with her.  I let her share my news with everyone -- I was 8 weeks pregnant.

During those days we protected her.  It was my decision.  I didn't want her to be scared.  I didn't want her to know that she was losing her battle.  I wanted those days to be filled with love and laughter.  For her last days to be as full as possible.  Maybe I was wrong to do this.  I still question this decision.  Maybe I should have let people be honest with her.  Let her say goodbye.  Let her leave on her terms.  I couldn't!  I wouldn't!  Deep down I believe she knew -- I took weeks off of work, her family flew in from all over the country.  This wasn't normal.  But it was my turn.  My mom always protected me.  Comforted me.  Calmed my fears.  In her last days I knew I had to do this for her.

Her liver Dr. scolded me.  He wanted me to let her go peacefully, stop medical interventions.  Stop her drugs.  It was too late he said.  I wasn't ready to give up.  She wasn't either.   We're fighters -- strong like bull!

We tried one more round of chemo.  Hoping it would start reversing the tumors that had taken over her liver.  We planned a Derby day party with hats and virgin mint juleps.  We never had the party.  The chemo was too much.  Her liver was too weak.  She slipped back into unconsciousness.  It would be her last round.

The night before she died I laid in bed with my mom.  Holding her too me and told her that we would be OK.  That I would be OK.  I told her if she wanted to she could let go.  She didn't have to fight anymore.

On May 5, 2009 my mom lost her battle to breast cancer.  She was surrounded by family who held her hands while she took her last breath.  Who told her it was OK to go while her heart beat for minutes after.  The nurse told us she had a strong heart -- of course she did!

My mom may have lost her battle but the war isn't over.  Her fight mattered.  Her story matters.   I walk because I can.  I walk because she can't.  I walk to win her war.

Note: I am walking in the Susan G. Komen 3 Day in memory of my mom.

Saturday, January 7, 2012

A Little Peace

I haven't written much the last couple of weeks.  The holiday's exhausted me - in a wonderfully joyful way.  This is the third Christmas I have spent without my mom.  It was the first Christmas that I was able to embrace as my own.

The last three years we have hosted Christmas, in one form or another at my house.  There are many reasons. New babies, pregnancy, having my babies wake up in their own beds and discover Santa in their own home.  But mostly because being in my mom's home, without my mom, on Christmas is something I'm just not strong enough to face yet.  Too many memories.  Too many ghosts. 

Creating Christmas in my house was hard the first two years.  Emotionally draining.  I did it with a heavy heart.  Smiles hiding the tears that bubbled up to the surface and spilled too often. 

The hardest part for me?  Cooking!  And I love to cook.  But while my mom opened her home to many over the holidays, the kitchen was our space.  A place where the two of us fell into a rhythm creating the familiar dishes that filled our dining room table year after year and experimenting with one or two new additions to keep things fresh.

The last few years I have found myself in the kitchen alone.  Cooking the dishes I no longer need a recipe for because they are ingrained in my head and heart.  Those first two years I was consumed with the loneliness.  Hated the solitude.  Resented every moment I spent in the kitchen.

This year there was a shift.  Don't get me wrong - I still missed my mom every minute.  I still wished she was standing across the kitchen from me slicing onions.  But I also found peace in the routine.  Comfort in creating the dishes my mom served year after year.  A sense of continuity bringing them forward into the new Christmas we have begun to create.

A Christmas where my home and table welcome good friends to share a holiday meal with my family much like my mom's always did.  A Christmas where I snuggle up with my boys in Christmas PJs and listen to Nani and Poppi's voices read "Twas the Night Before Christmas."  A Christmas where mommy and daddy and uncle Joe Joe spend hours drinking and building toys while Grandpa looks on remembering the nights he spent doing the same thing.  A Christmas filled with bleary eyed boys stumbling from their rooms on Christmas morning to see what Santa left under their tree.  A Christmas that is my own, but shares the warmth and love and comfort of my mom's.

I hope one day I'll be able to face the ghosts of Christmas in NJ.  But for now, I'm going to enjoy the the peace I am finding in the Christmas Matt and I have created and claim a small victory.

Sunday, January 1, 2012

My New Years Resolutions

I've never been big into New Year's resolutions. But the dawn of a New Year has always excited me. Like the first day of a new school year, or a brand new planner. All shiny and new with lots of possibility. An opportunity to learn from the mistakes of the past, leave behind what didn't work and to and take forward the best from the years before.

There's a lot that lies ahead in 2012. And the one thing I have learned from the past is that everyday with the people you love is a gift. In 2012 I want to focus on that. To live everyday to the fullest with love and hope in my heart.

So in that vain, I am going to make some resolutions. Set some goals to keep me on track. A list I can look back on to motivate me and remind me to live my every day fully.

1. Focus on the blessings I have and not what is missing.

2. Train and make my health a focus. This year I will walk 60 miles in 3 days. My body has a lot of work to do before I'll be able to do this.

3. Strengthen and nurture my friendships with my girlfriends - the past few months I have found renewed energy in the comfort of good friends.

4. Spend time strengthening my marriage. - So much of our energy is spent on raising the boys that I often forget that Matt and I deserve each others energy too.

5. Live in the moment and celebrate the small joys of the every day. There are so many with two babies in the house and the time goes way too fast!

6. Find professional satisfaction.

7. Be patient with others - especially my children.

8. Be kind to myself.

I wish you all love, joy, happiness, peace and grace in 2012!