What being a caregiver for Stage 4 lung cancer taught me about love and advocacy
Written by ACS Volunteer Ambassador John Hussar, this essay details his 2.5-year journey as a caregiver for his wife June during her Stage 4 lung cancer battle and his transition into national cancer advocacy.
Takeaways:
Caregivers face intense emotional and physical challenges that require sudden adaptation and continuous hope.
Peer support groups provide essential coping spaces for both cancer patients and family caregivers.
Participating in advocacy organizations like the ACS Cancer Action Network helps channel grief into meaningful policy work.
Maintaining a shared personal mantra can build strength through difficult treatment periods.
“It’s lung cancer, stage four,” she said.
June, my wife of 36 years, looked at me from a hospital bed at Eisenhower Medical Center. I can never forget that life-changing moment.
She had thought she was having heart issues, which brought us to the ER that hot August day some 11 years ago. Thanks to the compassion and professionalism of that ER doctor, Dr. Raul Ruiz, he determined it was not a heart attack, but something was seriously wrong. He recommended she stay in the hospital to see our family doctor.
Our doctor started a battery of tests and a CAT scan, which revealed a tumor in her lung, two spots on her right thigh, and lymph nodes full of cancer that mimicked a heart attack.
Still in shock, we connected with Dr. Dreisbach, a wonderful, compassionate oncologist who told us on our first visit: "Only God knows when you will die." That gave us hope that June, a first-grade teacher, could beat this.
What is it like to be a primary cancer caregiver?
She was determined to fight with God's help, and I became her caregiver, husband, and best friend. I made sure we got to all doctor and chemo appointments, taking care of her through treatments that threatened to drain her daily.
She braved it all, even on oxygen and through many different chemo cocktails. She even went back to teaching until the cancer returned with an ugly vengeance. After 2.5 years of fighting, her body succumbed to the disease.
My life compass was broken.
As a caregiver, you must always hold onto hope and take care of your loved one 24/7. She laughed when I shaved my head when she began losing her hair. Being a caregiver was the most difficult and terrifying time of my life, though we shared tears of joy and relived sweet memories of raising our two daughters, who were now adults sharing the journey with us.
One person in our Tuesday support group at EMC told me:
"Being a caregiver is like running through the front door of a burning home and coming out the back door thinking, 'Did I just do that?' You react without thinking and do everything possible."
Before June passed away at home in hospice care, we clung to a phrase that helped me as a caregiver and advocate: “I may have cancer, but cancer NEVER has me.”
How does cancer advocacy make a difference for families?
This mantra has served me well as an advocate and ambassador for the American Cancer Society (ACS) and the ACS Cancer Action Network (ACS CAN).
ACS Cancer Action Network Scope
Local, State, and Federal Policy Lobbying
Annual Federal Capital Visits with Congressional Representatives
State Capitol Legislative Advocacy (e.g., Oral Drug Access Bills)
Public Awareness Events (e.g., Lights of Hope Memorials)
Advocacy for cancer patients and their families is just as crucial as pressing forward for research funding. ACS funds essential researchers across premier cancer institutions in America.
ACS CAN consists of volunteers of all ages—including survivors, patients, caregivers, and families who lost loved ones. As the advocacy arm of ACS, volunteer lobbyists share an agenda to support patients on local, state, and national levels. We meet annually with Congressional and Senate representatives regarding cancer research funding and healthcare legislation.
We also participate in inspiring national events like the 40,000 Lights of Hope luminaries around the Lincoln Memorial reflecting pool, honoring and remembering those impacted by cancer. On a state level, we meet with representatives in Sacramento to address key issues ranging from tobacco control to oral drug donation programs.
By John Hussar,
ACS Cancer Action Network Volunteer Ambassador for the Greater Coachella Valley
For more information on advocacy:
You don't have to navigate this alone.
Caregivers carry a heavy physical and emotional burden that deserves dedicated support and recognition. Connect with our community to find caregiver resources and peer groups. Connect with our virtual and in-person survivor support groups today.