Who Am I? Thought-Provoking Authentic Breakthrough
Last updated: January 2021
My name is Rhonda Meckstroth and this is my first article. Who am I? I am a daughter, sister, mother, and wife. My career is as a government project specialist for our local fire department. My qualities include loyal, stubbornness, driven, and I need to challenge my curiosity to learn and fight for what I believe in. If you are in my tribe, I will move heaven and earth for you. One would also say I am a caregiver and advocate for lung cancer.
Jeff and I are lucky...
My husband Jeff is a veteran, retired firefighter/paramedic, and a full-time farmer. Jeff was diagnosed with stage IV lung cancer in the fall of 2015 at the age of 57; the disease traveled to his lymph system, bones, and brain. But Jeff and I are lucky; Jeff mentioned a dry persistent cough during a routine annual physical that eventually led to comprehensive biomarker testing. Our oncologist even advised we were lucky that tissue and liquid biopsies confirmed an ALK mutation driving Jeff's cancer. The treatment option would be a daily pill and minimal side effects.
In those first weeks of a terminal cancer diagnosis, we did not understand or feel lucky. Five years later, we know, advances in research, testing and treatments have meant years of living with lung cancer.
Am I my husband's caregiver?
My husband of 24 years is living with stage IV, terminal, lung cancer, but I can honestly say I have never been a caregiver. Throughout our cancer journey, I have both announced and been introduced as a caregiver but I never felt authentic with the term. The traditional definition of a caregiver has never been my role and it inaccurately represents Jeff’s quality of life and independence. Instead of a caregiver, Jeff needed who I am, my qualities, and my determination to keep him alive.
Determination to find a path forward
Our health care system has serious failures in accurately diagnosing and treating lung cancer. Ensuring appropriate treatment is a burden. There are three significant decisions in Jeff’s treatment where I carried the burden. First was our oncologist’s belief that Jeff did not need a brain MRI. Ultimately, I persuaded the oncologist to capture images of Jeff’s brain in his quarterly chest CT scan. Lucky for us, one of the 8 tumors in Jeff’s brain was large enough to be seen on the CT scan
Secondly, was the immediate rush, to begin the process for whole brain radiation (WBR). When I questioned this decision, the Tumor Board advised they had never seen a lung cancer treatment that crossed the blood-brain barrier. This is not true. The third decision was a desperate email to an oncologist I found on the internet that specialized in Jeff’s rare cancer, Dr. Alice Shaw, with Boston Mass.
Within days of starting WBR, my email led to an evaluation of Jeff’s treatment plan, canceling of WBR, and a simple switch in medication. Several weeks later Jeff’s brain was cleared of all tumors and I started a search for a new general oncologist to work with Dr. Alice Shaw. I also contacted the lead of the Tumor Board to give access to Jeff’s clear brain MRI.
A personal authentic breakthrough
Recently, I stumbled across a video of a married couple discussing their journey with cancer. It resonated with me. The husband described his wife's cancer as another challenge he was going to help her navigate. Simply stating they would get through it together. The wife stated her husband was not a caregiver but a sharegiver! They shared every step of the journey together.
Who am I? My authentic breakthrough, I am a sharegiver! Jeff and I share everything, including living with lung cancer. Before the terminal cancer diagnosis, our life together had never been tested, we shared a fairy tale love story. Cancer did not test our love; it became another chapter in our shared journey. Jeff focuses on living and still farms our 600 acres of corn and soy beans, by himself; and I focus on keeping him alive.
Beside manner matters! What has your experience been?