"You look great, I thought it was going to be here comes baldy!"
"Do you think you have cancer, you know your body best."
"Are you sure you have cancer? You don't have the cancer look."
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Yes, there are things people regularly say to me. It's been five years since being diagnosed with stage 4 lung cancer. It's surprising to people unfamiliar with the advances in precision medication that your appearance isn't necesarily an indicator of your health.
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I'll be updating the information below shortly- the new book is about these past 5 years and what Matisse referred to as "second life." Matisse was seventy-one when he suffered a life-threatening illness. Surprised by his own survival, he returned to his studio, Matisse dubbed this reinvigorated self his “second life.” I have been granted a reprieve through the miracle of science, AKA the dedication of thousands of researchers, doctors, patient advocates,and partnerships with pharmaceuticals, which have produced the personalized meds that are keeping me stable.
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​Just a heads up- I've joined up with Web MD and will be contributing blog posts about life in the age of precision meds, I've got a new podcast coming in partnership with LCFA, and
I've just began a two-year term on the Communications committee of the IASLC.
​ Here we are the world conference in Barcelona, 2025
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Updates to this page coming the week of October 20th!
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Since writing about unexpectedly being diagnosed with stage iv lung cancer during Covid in The New York Times many folks have reached out. I appreciate the support and want to let you know that I'm doing very well, though I sometimes carpe a little too much diem, which you can read about here:TheWashingtonPost.
An issue I hope to make an impact on is bridging healthcare inequities. Here's an essay on tackling cancer while battling insurance companies: TheWashingtonPost.
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Upcoming: The essay: "A Lung Cancer Patient's Passionate Desire for Sexual Healing" which focuses on the work of Dr. Narjust Florez, the SHAWL Study: Sexual Health Assessment in Women with Lung Cancer, and why I'm listening to a lot of Marvin Gaye, have just published in The Oncologist Journal, November issue, 2023.
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It's been tremendously rewarding to be sharing the lived experience as a patient advocate. I was thrilled to be awarded The Patient Advocate Award at this year's World Lung Cancer Conference in Singapore,and have accepted a post on the editorial board of The American Society of Clincal Oncology's cancer.net.
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In 2022, I spoke in the opening plenary at the World Lung Cancer Conference in Vienna, at the Women Against Lung Cancer Conference in Rome, and the Multi-Omnics Conference in Brisbane. Recently, I hosted benefits for the Lung Cancer Research Foundation, Lung Cancer Foundation of America, and spoke at the global meet up for Akoya Biosciences.
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I've signed on to be part of an initiative with The Florida Lung Health Symposium aiming to bring lower cost screening to those at risk.
I've been astonished by the dedication, kindness, and brilliance of the wonderful humans that make up the global community of researchers, scientists, industry,clinicians, patient advocates,and NGOs, that are changing the landscape of diagnositcs, treatment, outcomes, and survivorship.
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Here are some resouces if you're in treatment or someone in your life has just received a life changing diagnosis of any kind:
check out this site that aggregates financial resources:myhealthcarefinances.com
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Lung Cancer research is woefully underfunded and also not on folks' radar and that's one of the reasons that survival rates are lower than other cancers. Forgive the Brady Bunch reference but we're the Jan of cancers, I hope that we'll one day be the Marcia of cancers!
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Here are two great organizations that fund research:
Lung Cancer Foundation of America
Lung Cancer Research Foundation
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If, like me, you've tested positive for the EGRF mutation,find our community on the private facebook page. I can't say enough great things about EGFR Resisters founded by Ivy Elkins and Jill Feldman.
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Go2foundation and Lungevity are great sites for info.
You can also see my interview on Good Morning America.
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