celebrating but not satisfied…

Thumbs up for my pal, NED.

Monday I had a PET scan that showed stable disease. No evidence of disease (NED)!   Which means the current treatments I am on are working and we will stay the course. 3½ years since my MBC diagnosis. Nearly 10 years after cancer first invaded our family as stage 2 breast cancer. This is the best possible news for someone with metastatic breast cancer (MBC) and I am relieved.   Grateful beyond words.

Yet, as I wait for the wave of relief to wash away my anxiety… it doesn’t come. Hundreds of likes and messages from friends and family exploding with joy and my heart still feels like it is breaking. Why???

Because this disease is so unfair. I have lost more friends than I can count on my hands in the past couple weeks. Many diagnosed after me and for which this time of stability didn’t exist.

The stress of the past couple days leading up to this scan sticks with me. The fear of bad news crushing the happiness of our family, striking another blow in the joy we have cautiously come to accept. The harsh reality that I have watched too many friends die of cancer recently. As I celebrate I can’t stop thinking of all the friends facing this same disease with devastating side effects, endless doctor appointments and how hard they are still trying to parent and create normal, happy lives for their children. How at any moment this could be me… My realization of how fragile my health is… And, there is the simple fact that my back and joints hurt. I was pretty certain this pain was a sign of new cancer. Knowing it isn’t is a huge relief but it doesn’t actually make the pain go away.

I want to be doing everything I can to help people, like me, with MBC.  Right now it just seems like we aren’t making much progress and I’m not doing enough.  My good news is reassuring – but until more people can get this same news I am not satisfied.

We had a wonderful spring break last week – enjoying time together in the Florida keys- lots of fishing, swimming, snorkeling, boating and simple family fun.   It doesn’t get a whole lot better than having your almost 12 year old quietly grab for your hand as you walk along the water or your 9 year old wanting you to put on a mask and snorkel and play together in the pool. These are precious moments I am grateful for. I took hundreds of pictures and videos as my kids nagged me to stop… if only they knew how each snap of my camera is my way of preserving time.  Capturing this moment of joy and health.  Holding it in my hand, proof that it happened.

Life is beautiful – and we are living it! Fully, completely, gratefully.

So, why am I not more joyful for the good news of my scan? Why is the anxiety hanging on? Is it guilt that so many I love are struggling with harder treatments and devastating news? The fear of the perceived future when I too will be sick… The recent deaths of friends whose lives were stolen by cancer… Is it the frustration that I’m not doing enough to accelerate research.  I want a national stage – I want to speak to 1,000s.  I want to be on the Today Show and tell everyone about Hope Scarves and why we need more emphasis on MBC Research.  Am I holding on tightly to the laughter of this past week, sad that these experiences are so quickly memories? Is it the anger I feel that millions of dollars are spent on breast cancer awareness instead of research to save peoples lives… like mine? Is it the fact that my hormones are that of an 80-year-old woman and I’m a nut case? A little bit of all of this…

My reality with MBC is a constant roller coaster on a ride I didn’t realize existed. Before my MBC diagnosis I was lead to believe everyone “beat breast cancer.” I celebrated survivors just like the rest of the world – not giving much thought that there were 113 people every day not celebrating… but DYING. Now that I’m on this ride these are my friends. I know their faces, their names and their stories and I’m mad as hell that we can’t save their lives.  That’s why we started the MBC Research fund at Hope Scarves and why I am working tirelessly to create a national collaborative effort of other like minded organizations to invest in meaningful research… more on this soon and my quest to move the needle on research.

All of Bennett’s life we’ve faced cancer. It brings me joy to celebrate together! And, yes, he knows how to pop champagne…

So, we popped champagne with echoing laughter and I quietly cried. On the same day – filled with joy and gratitude, fear and worry. The delicate balance I have come to accept in the real world of breast cancer.

Writing helps me process my feelings. In a way, it is a prayer. Its how I share my worries with God and the universe.  It helps me understand myself and reflect on our story. It allows me reach out to others with these struggles and by sharing, hopefully others can relate and reflect on their experiences too. Perhaps our shared experiences will help us find common ground and connect. May my friends in really hard places know how much I care for them. How much I admire their perseverance and determination. I hope my words will also one-day help our children understand the journey we are on. Our words live on forever. Thank you for reading and caring about me.  It brings me comfort to know I am surrounded by so many who love and celebrate and cry together as we face cancer.

A combination of love and fear. Both whole and broken – living my hopeful life.