Tuesday, January 16, 2018

Full Circle in Five Years

I was gluing green ‘fish scales’ onto a long black felt singlet when the phone rang on January 16, 2013.

A cell phone call from my mom, at nearly 9pm was unlikely to be good news but I made no real assumptions.

“I have breast cancer,” she said.

There were no auditory tears and there was no catch in her voice. She was matter-of-fact in her sharing of this information. But it hit me like a ton of bricks.

Within a week I would request a leave of absence from my job in Silicon Valley. Over the next few weeks, I would investigate breast cancer diagnoses, treatments and prognoses online. I would find #bcsm and #lcsm on Twitter. I would learn about TDM staging and the difference between a lumpectomy and a mastectomy. I would read about BRCA mutations and check out books written by previvors.

Not even a month after my mom’s diagnosis, I would fly to Texas to visit with her surgeon at the lumpectomy post-op appointment and learn first hand about the devastation in hearing the words, “We didn’t get clean margins.”

And then her chemo began, and I made another trip to Texas for the obligatory shave the head event (and dye my hair with a pink streak).

Mere weeks later I would receive my own cancer diagnosis.

The trajectory from that date five years ago to today has been dizzying and surreal. I knew from the very first day after my own diagnosis that something good had to come out of the shitstorm that is a mother-daughter diagnosis. And yet I don’t really believe things “happen for a reason.”

Instead I believe “things happening creates a reason.”

I never returned to my job.

Instead I accidently created a new one.

I began consulting quite by accident when someone, after a lengthy conversation regarding gaps in the healthcare system morphed into my ideas around building scalable, repeatable models of patient engagement. And then he asked me what my hourly rate was.

In the years since, I have become a vocal voice for health education, true shared decision making and patient engagement across the cancer continuum. I have elbowed my way into medical conferences to learn the latest in research, treatments and outcomes. I’ve brought the reality of survivorship to those in digital health and diagnostic testing. I’ve advocated for a transformation to a proactive, wellness-based healthcare system from our reactive, illness-based system. I have shared my experiences far and wide - sometimes as the token patient on a stage filled with providers and sometimes as a voice representing a whole community. I’ve spent time on Capitol Hill advocating for policies that support the short and long term needs unique to people with a cancer diagnosis. I’ve connected people to knowledge and people to organizations and amazing people to amazing people. And, most importantly, I’ve met some of the most amazing, brilliant and driven advocates that I’m now proud to call my friends.

And today, exactly five years to the day after I received that phone call, I am joining a mission-based start-up company intent on changing the dynamic for cancer patients and their community of caregivers via a combination of empathy and expertise.

I suppose it’s not accurate to say that “I’ve come full circle” since, in all honesty, the circle I’d become accustomed to legitimately blew apart on that day five years ago.

But I do feel circle-like today. A single devastating phone call was not the end but rather the beginning. Today I feel whole. I feel complete. And, most of all, I feel deeply grateful.