hush little baby

I am in the middle of a nine day stretch on my own while Jay travels for work.  As much as we all miss him and look forward to his morning and nightly calls, I am really happy that I can do this again.  You see, Jay’s job has always involved travel and the boys are used to him “flying” to meetings in other countries.  Over the past year my parents have come down when Jay travels and we are appreciative of the help.  But, this week I wanted to do it on my own.  This is a slice of our old normal that I used to be frustrated about and this week am simply loving… in a semi-exhausted way.

When Jay travels we haul the little trundle bed mattress into the master bedroom and the boys alternate sleeping in the big bed and the little bed on the floor below.   We fall asleep together talking in the dark about basketball, frogs and the country of Chad, which Bennett told me is also a river. Giggles.  It’s a sleepover every night.  I love it and I love that they do too.  After they close their eyes I read late into the night as I listen to them breath and dream.  Some nights I just stare at them in love.

I hold them close and whisper how much I love them.  Hoping these words will sink deep into their sub conscience.  Locked away in the deepest part of their being to become something they feel in their soul without having to actually hear.  I love you with all my heart and all my soul… forever.

Last night Bennett woke up with a night terror.  You know, when they cry out with their eyes open but they aren’t really there. He was sobbing and confused.  I held his shaking body close and sang “Hush little Baby”  like I did when he was tiny.  His body relaxed in my arms and he held my hand as his blank eyes closed and the calm breathing of sleep returned.  I held him until my arm fell asleep- whispering how much I loved him over and over and over.   Like all parents, I can’t stand to see our kids sad or hurt. As I held him last night I was sick to my stomach thinking about how this damn cancer was going to bring sadness we can’t hush.   And that one day I am going to cause my sweet boy this same kind of out of body sadness by leaving this earth.    Squeeze tighter.  Hold on to right now.

When I think about the sadness cancer is going to cause my three boys that’s when I get the maddest of all.  That’s when I get really pissed off.   When I think about what it has already robbed from our family and what it is going to take away from us in the future I am infuriated.  But, I have to let go of the anger and the pain of tomorrow before it consumes me with paralyzing fear.  I hold on to today.  Literally hold on… to the ones I love, to the leash as I run with our dog keeper, I hold on to the “crow pose” in yoga. “Hold on!” I yell at the boys when I just want one private moment in the bathroom.  Holding on for dear life.    Clinging so tight to my dear life that I don’t take one moment, day or week on my own with the boys for granted.

Hush little baby.  Know that mama is here… For now my physical hug surrounds you, but you have my heart and soul forever.

Hold on.
Lara

One year and counting…

The median survival for metastatic breast cancer is 3 years.  I have probably been living with the disease for awhile since my tumor was so big when discovered, but by the books it has now been one year since my diagnosis.  Sit with that for a moment.  1 year into a three year median survival.

Unfair.

I look at pictures on facebook of friends who are no longer with us because of this damn disease.  I look at pictures of them 2 years before they died.  They are beautiful, radiant. happy.

So as I live in the moment and laugh and consume myself with all the amazing “normalness” of our life these days.  I drive my kids to school, sports and playdates.  I move my body every day – yoga, trail running, bootcamp.  I love how strong my body feels right now and how I can push myself to get stronger.  I love how I feel when I hold a backbend in yoga.  But, as the blood rushes to my head and my arms shake, I wonder how long I will be able to do this…

54b9ac79f02065e36e0e2592I found myself shopping and thinking about house projects again.  Every day things I used to love, but haven’t seen any point to for the past year.  It’s fun to be “normal” and happy. But I think about that three year statistic as I walk around Anthropologie and I think about who would look cute in the dress I buy so it doesn’t go to waste.

Cancer isn’t right in front of my face all day.  Before it was all I could see.  Now it sits in my peripheral vision… always looming there, but not in my face.

I’m grateful to be able to laugh and plan and do everything I want to physically.  Some people with this disease don’t have that chance.  So, I face down the fear of what is to come every day.  I focus on the simple joys of our beautiful life.  I look back on all we faced this past year and am so thankful to be where we are today.  I would give anything to make it all go away and to be able to think about my children’s future without fear.  To dream again about all the plans jay and I have for the future.

I read a quote this week that I have been focused on: “Fear doesn’t prevent death.  It prevents life.”
So, I live and love and laugh.

For our lives are made up of each day and each moment.  I don’t know if I have 2 years or 10 years… but I know I have the day before me.  So do each of you.
live each day with intention and purpose.

one year and counting… on many more laughs, adventures and love.
Lara

Looking back, Looking forward…

6 years ago we threw a New Years Eve party to mark the end of the year “I had cancer” and celebrate all our hopes and dreams for 2009.  It was the happiest New Year of my life.  I remember feeling so overwhelmed with gratefulness and so eager to see what the future held for our little family.  I remember our new home brimming with friends and laughter.  I was on top of the world.  Of course, the year that followed was not full of pure joy. We lost Jay’s dad, Jay was re-located to Louisville, KY, we had to move from that amazing new home and say good-bye to dear friends.  Despite the tears, we faced these challenges with hope for the future.  Knowing we would make the best of whatever comes our way – just as we always have. And, we did.  Louisville, KY ended up being a wonderful place to call home.  We found another great house and made new friends while maintaining special friendships. We found a way to keep Jay’s dad’s memory alive by continuing traditions he loved and telling the kids stories of him regularly.  Life continued in beautiful, hopeful ways.

54a6a63bf02065253f49a422Fast forward to New Years Eve 2015.  On a night I usually love – a night of reflecting and setting goals and celebrating blessings.  Jay poured me a delicious glass of my favorite champagne and I sat in fear of what the year ahead held.  I couldn’t shake it.  I told myself turning the calendar to 2015 was going to be a turning point to allow myself to feel the same relief and joy and excitement I had when I “beat” breast cancer the first time.  But, the relief didn’t come.  The anxiety, sadness and fear of the future held so tight that it was hard to breath.  I have stage 4 breast cancer.  There is no cure.  Time is my biggest gift, yet each day that passes also means I am closer to the next progression, the next drug failing, the next bad news.  Shake it!  Shake it! Focus on right now.  Focus on the joys of life today.  Many days I can do this.  But, honestly, not all the time… life has changed for us.  Permanently.

Yet, life is great for us right now.  We surprised the kids on Christmas Day with a box within a box, within 54a6a64ba589b41018ced81ba box holding clues that lead to a Christmas day surprise adventure to Florida complete with Disney, fishing and the beach. As we walked to our plane on Christmas afternoon Bennett grabbed my hand and beamed from ear to ear.  I looked down at his freckled face with pure joy. Unfortunately we all had a cold at one point on the trip.  Mine coming first a couple days before Christmas and lasting the whole trip.  But, we didn’t let that deter us.  We filled our days with fun and were all asleep by 8:00 most nights.   We had great seats to see Cirque de Soleil in Downtown Disney and Wills slept below the death defying trampoline show – exhausted.  But, its hard to let the “crud” keep you down in the warm sunshine.  We went on two fishing charter trips – caught 5 new species (the boys have a running list).  Ended our trip on the beach for several days.  We sat on an empty beach catching waves and pompano.   We were a family on vacation – dealing with colds.  Not a family living with stage 4 breast cancer.  It was amazing!

54a6a643a689b453399b7ca9As we were going through security  on our way home (and commenting on how smoothly it was going) Wills’ bag got stuck in the xray machine.  People were scrambling around- we weren’t sure what was going on.  Suddenly several “important” security guards came over to us concerned.  At that same moment I remembered the souvenir Wills had from disney… an indiana jones pistol.  In his backpack. Long story short- don’t bring a toy gun on an airplane.  The gun was confiscated, we were questioned and sent back through the now insanely long security line… luckily still making our flight. Instead of freaking out, we all kept our calm.  We told the kids that we all get bad news and are put in frustrating circumstances.  Its what you do with the situation that is a true test of character.  Getting upset and stressing out only makes the situation harder…  They are going to learn this lesson repeatedly in their young lives.  As we waited in the long line explaining this lesson, I just kept looking at their tired eyes and wishing airport security lines were the worst of their worries…

54a6a633a589b4861cced309Now here we are, welcoming in a New Year and I sit in fear.  Fear the persistent pain in my back is a new tumor that didn’t show up on the PET scan.  A friend of mine recently had this happen.  Her clear scan didn’t bring relief and pain continued so she requested an MRI which revealed new cancer growth too small for PET to detect.  I plan to ask my doctor about this at my next appointment.  Years of cancer teach you how to listen to your body and mine doesn’t feel right.

Yet, on New Years Day Team Mac went for a hike in the sunshine.  The boys threw rocks on the frozen streams for an hour, we made obstacle courses from fallen logs and tried our agility on our own parkour course… (insert hilarious laughter at me trying to shimmy up a tree).  When we got in the car to drive home I decided to run home instead and spent the next hour navigating the muddy trails- winding my way home on an intentionally indirect route.   The rest of the day involved an insane amount of football, nacho average nachos and family soccer game.  By the evening I was so sore a warm bath was my only relief, but I was happy.

Yet, as I laid in the warm epsom salts I wondered how long I would be able to keep up with “team mac” – how long I would be able to keep doing the things i love.  Keep being the mom I want to be.  The mom who climbs trees, balances on logs and chases her boys around the woods.  The fear slipped over me like a new layer of skin and the paranoia, sadness and fear took hold of the joys of hours earlier.

This is the tedious balance of life with stage 4 breast cancer.  Joys and gratefulness / fears and paranoia.   I54a6a6258b5cd3181a2afedb wish turning the calendar to 2015 meant I had found a way to rise above the worries.  I wish I was writing a post about hope and fresh starts and facing my fears with determination alone.  That I knew 2015 would hold a miracle of good health. Of course, all these feelings are within me, yet they are mixed with sadness and anger.  That’s just the ugly truth.

As I look back I am overwhelmed with thankfulness for our beautiful life.  As I look forward I know there is more beauty in store for us.  Our story isn’t done YET!  I didn’t choose this awful balancing act nor would I wish this journey for anyone.  But, it is the path set before us and we will face it with joy and fear, prepared for bad news and good news.

Thank you for your encouragement and support on our journey.  This is a place for me to reflect and express my feelings and it means a lot to me that you are interested. I wish you and your family a wonderful 2015- Not a year free of hard times… that’s not reality.  But a year full of resolve to face the hard times with patience and determination.  And clarity to see the beauty in life especially when things aren’t wonderful.

And always, always hope.
Lara

Most wonderful time of the year

It was this time last year that I first starting experiencing back pain.  Of course I quickly dismissed it as a sports related injury and carried on with all the merriment of the holidays. I threw Jay a surprise 40th birthday party, attended Christmas parties, saw the nutcracker, baked Christmas cookies, traveled all over Michigan to spend time with family.  I was so happy.  Joyfully singing Christmas carols around the house and making our elf do all kinds of crazy things.  I love the holidays and a little back pain wasn’t going to slow me down.

This year I feel like I am watching the world celebrate and laugh and toast friendship & good health.  And I am kind of in a sort of daze.  Bogged down with anxiety of what will happen next.  Paranoid that each ache and pain I feel is another cancer tumor.  Tired and unable to multi-task like I always do.  Unmotivated to make 40 jars of granola for all our neighbors, teachers and friends. Avoiding making Christmas cookies because I don’t eat sugar anymore and that would just be torture. Living in this world, but not truly feeling it.  The warm fuzzy feeling I get when I light the Christmas tree and put on Christmas music isn’t here this year.  Instead I am fearful and anxious and sore and tired.

There are moments each day of happiness.  Usually involving being close to my boys – a snuggle on the couch, listening to them talk about something they are excited about, watching the three of them throw a football or seeing Bennett’s excitement when he takes off the advent calendar number…

Yet, the further away I get from my old self the more I miss it. You’d think it would get easier. But, right now at the holidays I am just really angry that our old life was taken away from us.  That I have to be intentional about being happy instead of just being happy.  I focus on optimism and hope as my go to coping mechanism.  I don’t know if it will extend my life, but It certainly will make the time I have more fun.  It’s just not always that easy.

Last Christmas I spent an afternoon with my friend Sandra while she got a chemo infusion right before Christmas.   I remember posting a picture of us together and encouraging others to remember those who are sick or afraid during the holidays.  Sandra died of metastatic breast cancer 5 months later.  I can still hear her sweet voice as we talked about our hopes for 2014.  She wanted to wear a fancy dress and dance with a handsome man. Neither of us could have imagined what 2014 would really bring.

That’s the hard part of living in uncertainty and facing a diagnosis that has no cure or finish life.  You live your life with hopes and dreams.  You make plans and carry on.  You look healthy.  There are no more meal trains or “team Lara” tshirts.   I am not “sick” right now… I should be so happy.  Yet I am livingly dying.

So this holiday – remember those who are weak or afraid.  Cherish your carefree laughter and all the running around that drives you crazy.  Don’t get bogged down with the peripheral stuff.  Focus on what matters, take time to feel the warmth and magic of the holidays and make exciting plans for 2015.

life is beautiful.
Lara

Stable!

Excited to share that my PET scan today revealed no new cancer growth!! We are relieved beyond words to get this good news.

547fcd064db92144349f22a8Jay and I enjoyed a beautiful breakfast together with tears of joy and laughter. Then keeper and I went for a long trail run. Since it was 36 degrees and drizzling there weren’t many people in the park and I let her run free. She and I both couldn’t get enough of the fresh air and freedom. Free of the worry these scans bring and the fear of progression. Free of a leash that holds you back from being all you can be.

Tomorrow I am off to Chicago for a first annual God daughter trip with my sweet Edie (and her mama!) can’t wait for some girly fun and spoiling.

Living life to the fullest. In three month increments. It’s not easy, but it’s our life now and we are so thankful for good news today. My heart goes out to my sisters in this journey who are facing bad news, painful progression and fear of treatments not working. And my deepest hope for peace goes out to those who are close to the end of this journey and to the families of those who have lost loved ones. Facing cancer is a scary, hard thing. We are all in this together.

Thanks to everyone for your encouragement, prayers, jokes and calls. I feel surrounded by your love each step of this journey.

May Peace and hope surround you during the holidays and always. It certainly is all around our family!

Lara