Sadly, LCFA Speaker and lung cancer patient/advocate Gina Hollenbeck passed away on June 12, 2022. Gina’s guiding principle comes from a phrase in a book she read by Dale Carnegie in which he wrote: “Two men looked out from prison bars, one saw the mud, the other saw stars.” Gina always saw the stars.
Her is her personal lung cancer story from July 2019:
A Misdiagnosis Kickstarts Gina’s Fight Against Lung Cancer
At no point did Gina Hollenbeck even consider the possibility that her nagging cough, sore throat, and shoulder pain were caused by lung cancer. At the time, the 38-year-old mother of two was the picture of health. She played competitive tennis, competed in half marathons, ate an organic vegetarian diet, and worked as a nurse running two medical clinics (so she knew a thing or two about medicine).
Like many other lung cancer patients, Gina was originally misdiagnosed: first with allergies, then with gastric reflux. When several prescribed medications did nothing to allay her symptoms, she took matters into her own hands and called her primary care physician to request a chest x-ray. The office never returned her call. It wasn’t until she called in a favor with a colleague working at a diagnostic x-ray facility, and decided to pay for her own imaging, that Gina would be on the road to a proper diagnosis.
The attending radiologist told her, “Something is really wrong with your left lung. You need to see a pulmonologist now!” When she learned that it would be two months before she could be seen, she took her x-ray films straight to the emergency room. There, they narrowed it down to either pneumonia or histoplasmosis. Because the two ailments have very different treatment protocols, a biopsy was performed. No one even suggested this could be lung cancer.
Even in the Face of ALK Positive Lung Cancer, the Party Goes On
By this time, it had been two months since the onset of Gina’s symptoms. Now, in addition to her persistent cough, Gina was losing weight at a remarkable rate. It was then that she asked her pulmonologist if it could be cancer. He replied,
“No.You never smoked.”
A week later, the pathology report would come back with tumor cells. Gina had Stage 4 ALK positive lung cancer. She would soon learn that it had also metastasized to her brain. That was on October 28, 2015. But nothing was going to stop Gina, her husband Greg, and their sons Hudson and Hayden from having their spectacularly epic annual Halloween party. After all, Gina mused, it could be her last.
“I don’t have a choice about cancer, but I do have a choice about how I am going to react. I am going to live every single moment to the absolute fullest.”
And so the party went on.
From Patient to Fierce Lung Cancer Advocate
Gina would soon undergo a rigorous treatment protocol including targeted therapy, the removal of her left lung, and a craniotomy to excise the tumor from her brain. Gina recovered like a champ. She recalls her first post op shower:
“There I was, staples in my head, the water beating down on me and I fell to my knees and cried. I was so grateful to be alive, to be given another day. It is amazing how we can endure and recover. Before cancer I looked at the world as being full of selfish people. All I see now is the good. Everything was a struggle, but now I marvel at getting to do this all. I actually enjoy laundry!”
No story about Gina would be complete without mentioning her role in securing funding for lung cancer research. What began as a small, private Facebook group for patients with ALK positive lung cancer, has become a 1,600 member community under her guidance. In just over a year, members from around the world raised an impressive $600,000, directly funding three separate research grants. If that wasn’t enough, an anonymous donor in her group funds the “Second Opinion Program” which pays for patients in rural and medically underserved communities to be seen either remotely, at University of Colorado Denver, or Mass General Hospital. Wow.
For seven months, Gina was NED (no evidence of disease.) She currently has a “stupid brain tumor…<they> named him Richard,” but her spirit and zest are unbreakable.
“I look horrible on paper, but I feel great!”
Watch Gina and Dr. Jessica Donington as they discuss how patients can get involved in supporting lung cancer research. The patient voice is needed to advance the science and create more effective treatments.