I was diagnosed with Stage IV lung cancer in October. To say this was a shock is a terrible understatement. My only symptom was a persistent cough.
I carry two genetic mutations. The first, BAP1 cancer predisposition syndrome, is hereditary and is present in all of my cells. Those who carry this mutation have an 85% chance of being diagnosed with cancer by the age of 65. It was most likely passed down through my maternal grandmother, who lost three brothers in their 50’s to lung cancer, one of whom was my godfather.
The second genetic mutation, EGFR, is non-hereditary. This mutation is present in 10% of all lung cancer diagnoses and is most commonly identified in healthy, young females with minimal or no exposure to smoking (of whom I have now met many).
Over the last several decades, while rates of lung cancer have fallen for men, they have grown dramatically for women (+84%). No one knows why. In the U.S. 20% of women diagnosed with lung cancer are non-smokers.
Lung cancer kills more Americans (433 every day) than the next three most common cancers combined (breast, colon and prostate). While fundraising and screening is normalized for these cancers, lung cancer is severely underfunded based on stigma, and most patients (particularly younger) are not diagnosed until advanced stage. It is the least funded cancer in terms of research dollars per death. Anyone with lungs can get lung cancer and no one deserves to die from lung cancer.
Although this is a devastating diagnosis, medical advancements are being made at a rapid pace in lung cancer. The oral medication keeping me healthy now has only been around for a few years. It is targeted specifically for the EGFR mutation. I experience some side effects but am very grateful to qualify for this treatment. I continue to take good care of myself in the hope that this can be managed as a chronic illness within my lifetime.
My diagnosis has offered an extraordinary awareness of all I have to be grateful for today and every day in this beautiful world, as well as a determination to be present for the million small and simple joys right in front of me. Today is all any of us have. The future is a dream I’ve learned to hold hopefully while focusing my energy on positive actions within my control.
I try to lead each day with laughter, curiosity, connection and love. Some days are tough, but most days are good and many feel happily normal.
I‘ve struggled and continue to struggle with how much to share. I'm happy and comfortable to be open. I’ve hesitated to share more broadly, as I hate the thought of causing anyone pain and know this is a heavy and hard thing to carry for those who love us. It’s taken me a while to orient myself to this new reality and get comfortable with the uncertainty of my diagnosis. It’s a lot to process, but we are doing well.
We have been humbled, amazed and so incredibly thankful for the overwhelming support from our people who have been holding us tight and caring for us in a thousand ways - whether through a meal, a hug, a book, a prayer, a thoughtful message or gesture. The world is filled with breathtaking love. I can’t unsee it, it has changed me forever. We continue to move forward with that love, as well as positivity and HOPE.
I’m so thankful for all the care our family has received. It’s meant everything to me. Whatever struggles you may be going through, please know that you are never alone!