Monday, July 17, 2017

“What Are You Really Doing?”


After four years in the social media cancer community, I finally felt the sting of an antagonistic, non-productive comment. But, as with most things social, it certainly got me thinking.

Last week, along with 40 other breast cancer advocates, I attended a training in San Diego to learn about cell biology; mechanisms of metastases; immunology and immunotherapy; systematic review and meta-analysis; policy advocacy and much, much more. We now make up the ProjectLEAD Class of 2017 and will each take our learnings back to our respective communities to further enhance and accelerate our advocacy work.

When I posted a photo of this incredible group, a friend, a staunch advocate for metastatic research and an incredible human being asked me publicly via Facebook comments to make sure the needs of the metastatic community are added to the conversation.

I expected this request.

Metastatic breast cancer continues to kill ~110 women each day and yet receives minimal funding from key sources.  I assured her that, “My goal every single day is to find a way to stop premature death from all cancers and to preserve the highest quality of life along the way.”

What I did not expect was a comment to my reply from another individual, “How! What are you really doing?” This and a couple other comments (that have since been deleted by the commenter) had me feeling a bit defensive.

Okay, REALLY defensive.

But it did get me thinking. What in the heck DO I actually do?

I realized the question was likely rhetorical but felt that I should still be able to answer the nuts and bolts of my day to day.

So I did what I typically do in times of mental and emotional turmoil, I brewed and extra pot of coffee, gave it some thought and then went to the gym to shed the frustration and find my words.

Rather than list out the research projects I’m collaborating with and how they play a role in either improving quality of life or improving therapies; or share the roles I play in defining and evolving patient services; or even explain the new realm of health policy advocacy I’ve been lending my voice to; I thought I’d share the basics.

So THIS is what I have been doing for the past few years and this is what I do EVERY. SINGLE. DAY.:

I share. I share my story to help demystify the realities of receiving, understanding and dealing with a cancer diagnosis. Some shares are more challenging that others but I share the clinical and emotional details of my treatment and survivorship in the hopes that, as knowledge breeds understanding and empathy, we can collectively transform the system to meet the unmet or unspoken clinical and holistic needs of the over 15M cancer survivors in the United States. And then I freely share my knowledge, my resources and my connections.

I listen. I listen to other patients, caregivers, family members, healthcare providers, healthcare innovators and health policy makers. I listen to learn. I listen so others might feel seen, heard and held. I listen to understand the care abouts of each audience so that I can help find our common threads and stitch together bridges that can help us cross our divides.

I speak up. As I learned from an incredible advocate at the 2015 PCORI Annual Meeting, I am fortunate to have keys. I have a house key – which means I have shelter. I have a car key – which means I have transportation. I have an office key – which means I have gainful employment. I speak up for myself and I speak up for those who have no keys. I mentioned recently to a friend that there comes a time in everyone’s life where they need to use their voice. I am simply grateful I’ve had so much support in finding mine.

These three things, in every particular combination, define my advocacy work, define my consulting work and define my person.

Four years ago on this very day, I ingested my first Tamoxifen pill and felt I transitioned from cancer patient to cancer survivor. Today my personal life and my advocacy life are very much intertwined. I am gutted with every loss in our community and I am buoyed by every NED or stable scan. I am skeptical regarding news of “breakthrough” science but am an eager collaborator with those individuals and organizations taking a person-centric approach with their research. I spend hours holding space for those who are scared, angry, confused or relieved and then I spend hours on clinicaltrials.gov searching for potential treatment options for those who have exhausted the options provided by their physicians. I am grateful to have clarity of purpose (if a slightly overbooked calendar) and an incredibly supportive, brilliant medical, research and advocacy community to work with me.

That is what I am really doing.

And my goal EVERY. SINGLE. DAY. is to find a way to stop premature death from all cancers and to preserve the highest quality of life along the way.