the sad parts. the happy parts

Tonight Wills was working on a social studies project about his ancestors.  We called grandparents and asked questions about when our family immigrated to the United States and why.  It was fascinating (more so for me, then Wills, but he’s 10).   In preparation for thinking about his ancestors he had to create a timeline of things that happened in his own first 5 years of life you can find out more.    We talked about where he was born, his first word (ball! Always said with an exclamation point), his trip to Mexico at 6 months old, etc…  Nonchalantly I said “you could add that when you were two I got cancer.”   When there wasn’t an answer I looked over at him and saw him starring intently at his paper as patches of red moved from his ears to his cheeks.  “I’m not putting that mom.” He said.   I sat down next to him and explained it was an important part of his life, a sad part, but nothing to be ashamed of.  As I leaned down to talk more I noticed tears streaming down his face.    For all the times I talk about cancer, all the programs he’s been to and listened to me share my story – I’ve never once seen him cry like this.   He wouldn’t look at me- he just stared at his paper as the tears streamed down his face.  Our sensitive ten year old – who doesn’t remember me without cancer, for whom life with cancer is just reality, couldn’t write it down.  Couldn’t face the fact that has been all around him his whole life.  My heart sank. I reached over and wiped his tears and said “I know it’s hard to share the sad parts of life.  If you’d rather not include this in your list that’s ok.”

I had no idea he was harboring such sadness.  We regularly talk about cancer and share how I am doing in age appropriate doses – it caught me off guard that he wasn’t comfortable talking about it himself.  The tears led to a nice conversation about how it’s not something to be ashamed of or to hide from.  It also reminds me that even when cancer is a part of every day like it has been for us since 2007, it isn’t easy for kids to understand or accept.  He is scared.  I am scared.

It breaks my heart to watch him cry.  As a mom you set out to protect your children – at all costs.  Bike helmets, car seats, parental controls on the ipad… Yet, here I am with metastatic breast cancer and I have the potential to cause him the most pain of his entire life.  Watching his mom become sick and eventually die.  The guilt and anger that comes from this thought is suffocating.  How can I prepare him for this reality?  How can I encourage him to talk about his feelings, to feel safe enough to share the sad parts of life with others?  To accept?

It’s unfair that moms like me have to think this way… that’s why I am so passionate about research.  I hold out hope that I will be here long enough to see advances in science.

And I too will focus on the happy parts.

8 is Great!

8 years ago today I looked into the bright blue eyes of our second child – a healthy baby boy.  I was so filled with joy and hope. Today I look into the eyes of a rambunctious, creative, caring, sporty 8 year old!   Our little miracle.  Our “chemo baby” we affectionately called him as we credited his bright red hair to the red chemo he and I endured 4 rounds of together before his birth.  Today his bright red hair reflects his fiery personality as he enthusiastically declares breakfast for dinner as his birthday request!   I stare at him thinking how  9 days after he was born I started back to chemo and 3 months later had a double mastectomy.  The entire first year of his life I was in treatment.  I couldn’t nurse or care for him on my own for long stretches of time.  As his hair grew, so did mine. It wasn’t the way I pictured motherhood, but it was our story.  And, we lived it to the fullest.

56b94e564db921362a7f2c9bThen, for 6 years – remission.   Good health.  Great health!  But, cancer was always part of our vocabulary.  A framed picture of us both bald- nose to nose hangs beside Bennett’s bed.  He used to ask me to tell him the story of “when we were both bald” as he lay in bed “stalling” the good-night kiss.  Both our boys knew I had cancer and that I created Hope Scarves to help others facing cancer. They heard me talk about cancer often. It was always behind us- a story of perseverance … with a happy ending.

Until one day… when cancer invaded our life again.  This time in the form of metastatic breast cancer. (which means cancer has spread beyond the breast.  In my case, bones.)  I looked into the eyes of that baby boy who never knew me before cancer. Whose whole life has happened since cancer.  And, I realized that I couldn’t change the fact that I had metastatic breast cancer.  I would continue to do everything I could to make my body, mind & spirit as healthy as possible. For him and his brother… for our family.  I couldn’t change the fact that I was in the 30% for which cancer spreads beyond the breast… but I could determine how I faced it.

And, so today, we celebrate Bennett’s 8th birthday!  We also celebrate 8 years of normal, everyday life.  Living life over cancer one day at a time. And we look to the future with hope.   It’s hard at times.  Overwhelming. I’d rather still be living the story with the happy ending- where we talk about cancer in the past tense.

56b94e34cb16b4174c562eb6Instead we live with a much greater appreciation for how precious life is.  We are thankful beyond words for the continued good response I have to my current treatment. Cancer doesn’t dominate our life.  But, it is a very real part of it. Every day.  The reality is hard as I watch others with metastatic breast cancer suffer. Today, my friend Shayne died – a single mom with two little ones.  She didn’t see her son turn 8.   She isn’t here to tuck him in tonight or fall for his bedtime stalling antics.  I’m overcome with anger and disbelief that 115 women die of metastatic breast cancer every day and that we don’t more strongly align stage iv research to ribbons.

It’s harder to celebrate in this reality of metastatic breast cancer.  But, we do.  Because we must.

The celebrations are what we live for.  And breakfast for dinner.  Happy birthday Bennett.

I love you with all my heart and all my soul.  forever.

Snow Day!

Our sons have just left with friends for different sledding excursions and the house is quiet.  A beautiful time to write as I watch the snow fall outside.  warm tea by my side.
We’ve been dealt some “regular” people blows this week.  Our furnace went out on the coldest day so far this year.   Que new furnace and  $$$
As I was driving home from exercising this morning I realized I had a flat tire.  Snow storm and flat tires don’t mesh.  Que dropping off car at the garage and $$$  Jay is out of town for work – as is our new routine during the week.   So, I’m here on my own shoveling out from Snowstorm Jonas.  Que sore back.

As i was sharing this series of unfortunate events with a friends we all commented on how bad my luck is this week.  But, not really.  You see, all this is so trivial.  It’s so solvable. My feathers haven’t been ruffled one bit.  It’s called perspective.    These things are bummers, sure.  Frustrating inconveniences.  But, fixable.

Cancer doesn’t bring much in the way of positive implications.  But, it sure brings perspective on this snow day.

Looking back, looking ahead…

What a year 2015 was for us!  This turn of the calendar pages held great joy, travels and good health.  The boys had a great year in school, success of the ball field and learned many new things as we watch them daily grow into wonderful boys.  Jay’s job allowed him a more flexible schedule and we all loved having him around during the week.  2016 brings a new role for Jay at Marmon so we are all gearing up for the return of Daddy’s travel away from us during the week. But, we are proud of him to take on a new challenge!  My on-going treatments allowed me to remain No Evidence of Disease (NED) through all of 2015.   My treatments are non-toxic and although not without side effects – allow me to live my life to the fullest with minimal side effects.  (wa-hoo!) We were lucky to travel around the world together – skiing in Big Sky with friends, Bahamas with family, a get away for Jay and I to Europe.  Summer in Michigan, family trip to Alabama, girls weekend in Sedona to celebrate a 30+ year friendship, surprise birthday trip to New York City and many more…   Each held spontaneous laughter, moments of carefree bliss and tears of joy.  The little things in life and the opportunity to make memories together never lost on me!

568aa030ac7ee9392ccc433dAs the clock struck midnight on New Years Eve.  I hugged our children and nieces and nephew with bittersweet tears.  I kissed my husband as we have for 18 years and wondered how long will this last?  It was hard to let go of 2015.  This year was great!  The coming year is unknown… How long will we laugh and seek adventures before the claw of cancer takes hold and steals me from this happiness?

For me, this is the cruelest thing about Metastatic Breast Cancer.  The absence of comfort that the disease is behind you.  In so many other health challenges you face the illness or disease and you move toward wellness.  But, here I sit, flourishing in wellness with the reality that this will shatter at some point.  How deeply I crave safety.  The feeling of being rescued from this sinking ship, knowing I am safe.  Instead of riding the waves with a crack in the hull…  The ride is fun right now, but you know the crack can break you at any time…  A storm can blow in at any time… My monthly treatments and never ending doctor appointments a stark reminder of this.

One of the most significant things I have learned this past year is that my thoughts can make me sick.  If I get lost in the perceived future the anxiety consumes me.  When I get anxious I become weak.  Worry can overtake me…  I don’t want this happy, healthy time to be stolen from us.  So, I work really hard at living in the moment and letting go of the fears of tomorrow.  I try to be fully present in the moment before me. And we plan things to look forward to… travel, time with friends, new experiences for our family.  I have spent many hours looking at the facebook pages of friends who have died of metastatic breast cancer.  You can look through their pictures and see the trajectory – happiness, treatment, wellness, treatment, more treatment, more treatment.  Smaller slivers of wellness… until the time comes to say good-bye.    Mothers, sisters, daughters.  Women who have so much to share with the world… gone before they can.   568a9fe28b5cd3d81f80c5de

So, here I am. Here. Healthy!  Nervous to let go of 2015, but tentatively ready to take on 2016.  Excited to see Hope Scarves grow and share our mission with more people facing cancer.  The potential for our little organization is huge.  I turn 40 this year!  Adventures in the works include a National Park RV trip, Belize with my parents and brother, horseback riding and yoga in Montana, a 40th trip with college buddies…  I know my ship is charted for great adventures.  I will do all I can to keep the hull strong – exercise, healthy eating, positive energy… but it is ultimately out of my control.  I can’t be rescued so I will ride the waves, enjoy the view and soak up the beauty of this life, regardless.

Fair winds and following seas!