A burning hope

Sometimes I feel like I’m living a lie in my happy, thankful, hopeful mecca. Like on days like today, when I look through the facebook pictures of my friend Colleen who died of metastatic breast cancer. I look at her smiling face and travels with her family. I see how the posts go… joy, fear, hope, sadness… silence.

This is the reality. Metastatic breast cancer isn’t hopeful or happy. Actually, It sucks. With a vengeance it sucks the life out of people. It tears families apart. It rips young moms out of the picture. It steals hopes and dreams and futures of families every single day. About 111 people. Every day. Where is the outrage?

Despite my fury, I compartmentalize my fears and anger… otherwise It would suffocate me. And, frankly it doesn’t fit. I live in the light because that is who I am. Who I have always been. I have to love and play and run and celebrate. But, am I doing a disservice to those suffering to not write over and over and over about the horror of this disease.   Am I sugar coating the reality just like the billboard of smiling women who “beat cancer” and perpetuate this idea that we are “winning the war on breast cancer?”   Because we aren’t. We are loosing it. One mother, sister, father, daughter at a time.

Here’s the reality – I live with fear and anxiety every day. But, if I stayed there I would crumple. So, I step into the light and live life over cancer. I channel my frustration into our work at Hope Scarves. I go to holiday parties, cheer on my kids on the basketball court, have lunch with friends, live my life – while also carrying this burden of pain and fear. I’ve had to adapt to survive in this balance between death and life.

But, never at the risk of forgetting the reality – never to stop fighting and demanding more money for research to accelerate treatment options and extend the lives of those facing this disease. Facing death. To demand we shift our thinking and our priorities to better support those facing terminal, advanced cancers.   We deserve more than a pink ribbon and celebration of survivorship. We need to fight for our lives. Get scrappy.

So, I am actively networking with other likeminded organizations like MBC Alliance, Metavivor, Twisted Pink, MBC Project and National Metastatic Breast Cancer Network to figure out how to use my voice and resources to make the biggest impact. I’m overwhelmed that things aren’t moving fast enough as I watch friends progress and get kicked off of clinical trials that aren’t working. But, we all push on to do our part to move the needle. We have to.

As I find balance between anger and hope – I look to a special file I keep on my desktop. The stories of beautiful women who have died. These women shared their stories with Hope Scarves and we have the honor to keep their words alive. To live out their hopes and dreams each day through our work of sharing scarves and stories with people facing cancer. I find comfort in their hope.   Despite the reality that they were dying – they lived in the light. The awful reality is they are no longer here to hug their families. Research didn’t move fast enough for them.

May their words guide us as we find the balance between anger, activism and hope.

Do not let adversity change you. Make your best effort to improve the adversity.

– Jaime

If you’re told you have five minutes to live, are you going to spend even one minute of that five minutes being unhappy?  Not me. You want to be happy every single second of that five minutes…and so, I am!

– Mary Ann

My motto throughout this journey has been, “One day at a time.” I would never choose to endure what I have, but I did choose to learn from it. I don’t take anything for granted anymore. I live for today. I love harder than I ever thought I could. I’m a survivor because I’m living and thriving (some days) with late stage recurrent metastatic cancer.

-Heather

Don’t let the pressure of all the treatments consume you. Don’t let the sadness suck all of your life energy from you. Fight for your own spirit!

– Karen

And, one that speaks especially true to me this morning…

“What is to give light must endure burning.”

Thank you Jaime for reminding me that we must burn to be a light.

This is where I am today.

Lara