The work ahead

One of the greatest aspects of my role as U.S. Chief Data Scientist was the chance to meet so many people from across the country. Their stories, hopes, and dreams, were fuel for a grueling job. And one of the most impactful stories was from Jennifer Bittner.

Jennifer took the time to write to President Obama to share her story. And that action kicked off a set of dominos that would have national impact and an impact on me that I would have never expected. Her original letter, like all letters to the President, is in the national archives and here’s a copy she allowed me to share:

Dear Mr. President,

On April 2, 2014, at age 36, I was diagnosed with Stage IV breast cancer (ER+/PR+, HER2-) with metastases in my liver, lungs, adrenal gland, spleen, ovaries, spine, hips, clavicle, ribs, and many other bones. Every oncologist told me and my husband to get my affairs in order. One oncologist said I would be in hospice within three months, by June 2014. After just 6 weeks of Taxol chemotherapy (and a radical shift in diet, increased exercise, and starting daily meditation), a PET scan miraculously revealed no evidence of disease. Unfortunately, once breast cancer has spread, it’s considered incurable — even with my incredible initial results. Nearly 11 months later, my cancer is stable and we are thankful for every single day of life.

I am the kind of person your precision medicine initiative will be helping and saving — and I want to do whatever I can to help. I come from a middle-class family in Pittsburgh where my father, a proud Vietnam veteran, was a telephone lineman for 40 years and my mother was a homemaker. I am proud to have worked my way up to the Vice President role at a publicly-traded healthcare company called Hanger, Inc. in Austin, TX. Ironically, I married a cancer biologist named Roderick Regala who identified Protein Kinase C iota as an oncogene for lung cancer while completing his post doctoral work at the Mayo Clinic in Jacksonville, Florida. Despite both working in healthcare, we find ourselves at a loss for a longterm solution to my cancer.

The average life expectancy for Stage IV breast cancer is three years. Three years… I have so much more to give to this world than three years would allow.

Thank you, from the bottom of my heart, for making precision medicine a priority. I am an example of one of the millions of productive, hardworking Americans who will benefit. Please let me know if there is anything I can do to help.

Kindest regards and many thanks,

Jennifer Bittner

I still keep a copy in my notebook. After I fill up the notebook, the first thing I do is move Jennifer’s note to my new notebook. If you’ve heard me give a talk, you’ve likely heard me read her letter out loud.

Why? Jennifer’s letter reminds me that in this day in age where we’re divided on so many things, it’s an important reminder that our time is finite. And what we do with that time is what matters most.

The United States is the only country in the world that has visited every planet in our solar system. We’re the country that brought researchers from around the world together to decode the human genome. We’ve led efforts to unlock the secrets of the atomic and quantum worlds. Yet, we all know someone we’ve lost to cancer.

The question I asked myself after Jennifer’s letter was handed to me, was what would it look like if we brought the full force of the United States of America against cancer? And that’s what helped define so much of our work through the Precision Medicine Initiative and All of US program as well as launching the Cancer Moonshot that was led by Vice President Biden.

No mother should have to worry about wondering if they have enough time in life to watch their child learn how to ride a bike, be on stage the first time in a play, or so many other firsts.

Jennifer did get more time thanks to an incredible care team, a more incredible family including her husband Rod and their two children, and countless friends.

After I left the White House, I was fortunate enough to be able to stay in touch with Jennifer. She would drop me notes of how she and the family were doing. It was always a relief to hear from her because cancer is the darkness that lurks in the shadows. And here was one of our email exchanges that was typical of Jennifer’s energy and relentless focus.

By the grace of God, my first chemotherapy worked beautifully and brought me to a state of “no evidence of disease” within just six short weeks. Unfortunately once solid tumor cancers like breast cancer have spread, they are considered incurable. Despite ongoing therapy, my cancer returned in January 2016, requiring surgery and a change to a new chemotherapy. I’m told I will continue like this, working through each available therapy until we run out of options.

As hard as my diagnosis was to hear, my incredible husband Rod Regala and I decided we weren’t going to stop living. In fact, we were going to embrace every moment and every opportunity. In January 2016, we welcomed our first child, a beautiful baby boy named Jameson Bittner Regala, thanks to the help of a wonderful surrogate. And in July 2017, we will welcome a second son, thanks to the help of that same wonderful surrogate.

Life with metastatic breast cancer isn’t the easiest, and it can be downright terrifying, but we love our life so much. My husband and I are grateful for every single moment. And as long as I can tuck my son in at night, and fall asleep holding my husband’s hand, it’s a fantastic day.

Vice President Biden’s Cancer Moonshot gives us SO MUCH HOPE. Every time I see the emotion in my parents’ eyes as they watch me endure another surgery, radiation, or treatment, it brings tears to my eyes knowing what VP Biden has gone through with his son. We are so grateful for his unwavering dedication to working towards a cure so that one day no parent will ever have to experience that kind of tragedy again.

My husband and I believe wholeheartedly in Moonshot and know that it will produce more therapies to extend my life, and possibly even cure my cancer. For that, I will be forever grateful to VP Biden. I would love the opportunity to shake his hand and show him that cancer is not taking us down; in fact, it’s people like him and efforts like Moonshot that are helping to lift us up.

Unfortunately, the cancer came back and the inevitable as well.

The news of Jennifer’s death hit me hard. As a data scientist, the data and graphs all told us this day was coming. But, I’ll be honest, I hoped that Jennifer would be that outlier. That data point that doesn’t make sense. The data point we pray for.

Jennifer used to say, “travel light, live light, spread the light, be the light”. She’s right. Need need to be the light. We need to focus on our work to become a beacon of inspiration and hope. And I know that we have an incredible amount of work ahead of us. So, I’ll keep Jennifer’s letter in my notebooks. And I’ll keep fighting to ensure that we bring the full force of science and technology to the fight against diseases like cancer.

Thank you Jennifer. Our work has only begun.

A full memorial of Jennifer can found here