Living with metastatic breast cancer is strange and hard and overwhelming.

Like families across the country we are getting back into the swing of school, homework and activities.  The boys are nervous about their new school, excited to see old friends and enjoying soccer, chess club and playdates.  I am working like crazy at Hope Scarves – planning our fundraiser on September 26th, creating a new ambassador program, public speaking, coordinating volunteers and scheduling requests for promotional appearances leading up to  “Pinktober”… and that was just yesterday.   Jay is working in Finland this week – a monthly trip he used to make regularly before stage 4 and my parents are in town to lend an extra hand.  By all accounts our life looks normal and happy.   And it is… but it’s not.

I have to sit on hold for an hour with the cable company, break up brotherly fights, fix flat tires and wash dishes – just like everyone else.  But, in between the “normal” I research organizations looking for a cure to metastatic breast cancer, follow blogs about people living with this disease- most of which are having a much harder time than me or are further along in the journey and taking really awful drugs that are in my future and it scares me terribly.  I read the memorials families post about women who have died from my same disease – gorgeous smiling moms hugging their children in happier times.  I send cards to loved ones left behind and look back at emails from a friend who I met through METS and died last week.  I look over her emails of encouragement to me and wonder at her hope and determination in the face of this disease… wondering with overwhelming fear what my future holds.  Then, I help figure out the difference between a rhombus and a parallelogram, I clean up puppy puddles and look for lost soccer shin guards.    It’s really strange… living like this. But, I am living!

I attended parent night at school last night and signed up for classroom parties in the coming year – I sat there staring at the dancing heart on the Valentines party sign up… just wondering what our life would be like on Valentines Day. Living with so much unknown and fear and wishing to just be a normal, laughing parent like everyone else in the room.  I signed up to bring a snack…

I yearn for happier times over the past 6 years.  For days when I was just creating Hope Scarves, running 6 mile trail runs, volunteering in our safe happy preschool, happily planning adventures together with my boys, laughing with friends, drinking good wine and just loving life.  I miss the chubby little hands of our sons in mine and their needing me to cut up their food or kiss boo-boos.  I miss stressing over lost sunglasses, tennis matches and mismatched socks. I miss spending hours running around town doing errands for meaningless things that at the time seemed very important… I miss going about my day without fear and sadness.

So, they call this the “new normal” and I am embracing it.  I can’t change that I have stage 4 cancer.  But, I can control the way I deal with it.  I am learning to live in this crazy, scary new reality.   Laughing and chit-chatting at parent teacher night one minute, crying in the hallway the next.  It isn’t normal, but it’s our life now.
I have an appointment with my oncologist this week and my monthly injection.  Then, he will schedule my PET scan for late September.    In the meantime I will continue to figure out how to balance this crazy reality we are living in.

Laughing/crying… celebrating/mourning.  And, always hoping.  ALWAYS Hoping!

Lara

Our family returned to ky this week after 8 amazing weeks in Michigan. Like we do each summer- we spent time with family and friends in the upper peninsula, petoskey, white lake and fish lake. Swimming, fishing, hiking, kayaking, eating delicious meals, laughing, sailing, playing on the beach, picking blueberries and so much more.

It was like all our other summers in Michigan on the outside- better even! This year we decided to rent our own cottage and were blessed to call our yellow cottage on the top of a Lake Michigan sand dune home for a month! It was an amazing place where I stayed on my own during the week with the boys and jay visited in between work trips. I loved being able to keep up with the boys and just be their mommy! Every day was an adventure. And I could do it all- climb sand dunes, paddle board, swim across my grandma’s lake, trail run with my best friend from high school!

I was able to relax about as much as you can with 6 and 9 year old boys on vacation. Maybe I should better say, I was able to fill up our days with fun and over extend myself like I love to do! There was an enormous amount of comfort in knowing that in the time we had there I would most likely be healthy. I knew I had this summer. And I made it all I could. 4,500 pictures to prove it. I sailed on Lake Michigan every chance the wind was right, I rarely missed a sunset, I drank good wine and cherished hugs with old friends. I snuggled the boys in the morning – getting out from our cozy bed just in time to make 10am Swim lessons. You could say we packed a lifetime of fun into this summer. Simply spending time with my three boys and making memories. I lived my life – instead of worrying about what the future held. Because I knew we had this summer.

Now we are back to reality. Back to living with metastatic breast cancer… Whatever that means. Back to the bed where I felt so sick and desperate this winter. Back to living with the unknown of what will come next or how long my current treatment will work. I have some side effects, but for the most part I can live my life. Yet, I am paralyzed and sad making the adjustment back to reality. Maybe it is some typical post amazing vacation blues, nerves to be starting a new school…but more so it is simply living in the uncertainty and knowing my body is not “well” that I can’t stand. I was able to just live in the moment this summer, but for some reason-here I feel like a patient again. Because, well, I am. I can’t escape it – I have stage 4 breast cancer. A terminal illness.

So, I proceed into a new school year with all the same joys and apprehensions of my other mommy friends. Trying to be “normal” when my fears and anxieties are so much deeper than I can explain. We will take the back to school pictures and kiss our kids good-bye and we will start the next chapter of this journey. Wishing we had a plan, some idea of what will happen for our family or better yet a cure. Wishing we could set our sights on an end to treatment or prepare for a procedure that would take care of this.

I have a PET scan in September – which will show us what the cancer is doing. If there is no sign of progression we will stay the course. If there is, we will adjust my medicine and hope we can find something to control it. I am working full time at Hope Scarves – planning our annual fundraiser for Sept. 26th (purchase tickets at www.hopescarves.org), Excited to see our organization grow and gain momentum in supporting women with cancer and I am focusing on making my body as healthy as possible – good nutrician, exercise, laughing, reducing stress, etc… I am planning a “back to school” trip to the beach with friends, Chicago with my God daughter and skiing this winter. All the time knowing things can change at any time. But, also that I want to have as much fun as i can for as long as I can.

Thank you for following our journey with stage 4 breast cancer. Hopefully my posts will continue to be of living life to the fullest and joyful adventures. But there are no guarantees.

One thing we do know… we’ll always have this summer.

with hope,
Lara