When my daughter Larissa was diagnosed with metastatic
breast cancer (MBC), her world could have come to an end.
She was thirty years old. She had just launched a nonprofit,
Community Navigators. It
was located in Connecticut, and its purpose was to provide services and support
to individuals with disabilities who were defining – and working to achieve –
their own futures.
She had recently bought a house and gotten engaged. She and
Martin were planning a wedding. She was thinking about starting a family soon.
And then in the blink of an eye everything changed. The lump
she found in her breast proved to be cancerous.
Before she could even begin treatment, the cancer had spread to her
liver and her bones.
Given the dire prognosis, I imagine that most people would
crawl into a hole, disappear from view, and take what comfort they could from
their remaining days.
That was not Larissa’s style.
She decided to get married immediately, and six days later
she and Martin were married in a beautiful, if hastily planned, ceremony. She
invested time in her nonprofit, working to build it and grow its reputation.
She gardened. She traveled. She built memories. And she hoped.
More importantly, Larissa decided to share her story, and
became a tireless advocate for women and men living with MBC. She started a
blog she called Metastatically
Speaking, through which she reported on her MBC journey. She connected with
the Pink Agenda and the Breast Cancer Research Foundation, tirelessly
raising money and awareness for both organizations and for metastatic breast
cancer research.
She created a bucket list, which included both travel and
getting to meet her singing idol, Mariah Carey. She made it to Florida several
times, and to Poland and Barbados, and she not only met Mariah, she grew to
call her a friend.
Larissa understood that her condition was serious when she
set living to forty as her goal and accepted that her dogs Bella, Dom, and
Mandy would have to substitute for a human family. What she never accepted was that she couldn’t
have hope for a brighter future.
Her cancer steadily progressed, and I grew to dread each
three month update. Although she got the best of care, it wasn’t always great
care. One health care provider lost her tumor records. She had to switch
insurers twice in two years – the first because her insurer wouldn’t cover the specialty
treatment she needed in network, and the second because after Congress and the
President did their work to undermine the Affordable Care Act in 2017, her
premium skyrocketed. That’s just a fact.
Last October, Larissa was featured on
Megyn Kelly Today, telling her story with grace, humor, and assertiveness.
She said that she knew she would die from her cancer, and that she was okay
with that.
What she wasn’t okay with was a system that offered so little to
people with serious chronic conditions in general. And after she met Lady Gaga
late last year, she said “Dad, you have to work with her foundation – she’s
really concerned about mental health, like you.”
Larissa had a knack for connecting dots like this. She
figured out what wasn’t working for her and for people with other serious
chronic conditions, and tried to fix it. She learned how to fight for the care
she and others needed but often didn’t get because of inadequate public and
private insurance. She wondered why we made it so hard.
During her two years of living and thriving with metastatic
breast cancer, Larissa found a public voice that I’m not sure even she realized
she had until then. She used that voice to advocate, educate, and inform, and to
help countless other people with all chronic conditions.
I would tell people I knew that if they ever felt they were
losing hope, or struggling to find their own purpose in life, they should watch
Larissa’s ten
minute Megyn Kelly Today segment. It would help them find purpose. It would
restore their hope.
Larissa died on May 10, after bringing hope and joy to my
world for thirty-two years. Megyn Kelly did a live tribute. Mariah Carey
tweeted her sorrow. Larissa left us with a message that no matter how bleak
things seem, there is always hope, while hoping only that she would never be
forgotten.
How wonderfully and honestly written, Paul. It is so sad that Larissa died so young. But she will not be forgotten for the purpose with which she lived her life and the grace with which she died.
ReplyDeleteWow!! Amazing story of hope, love, selflessness, and inspiration. Thank you for sharing this! I'm going to share this post with my 2 daughter's. I am sorry for your loss. Your daughter is a blessing to those of us who are still trying to make our way here on earth. Thank you.
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