As a 17-year thriver of a left temporal lobe brain tumor, Jeannine understands the evolution of the journey. As a cancer coach, writer, consultant and speaker, she has used her personal challenges to help others transform their lives. “I’ve used my health challenge for learning, personal transformation, and supporting other people affected by cancer”.
As she emerged from surgery into recovery, she began her path of healing that deepened with a brain tumor recurrence. Today, Jeannine is promoting messages of motivation and inspiration. Cancer patients benefit from standard of care and innovative cancer treatments when necessary, and integrative cancer care to improve quality of life, cancer survival, and cancer prevention.
Jeannine, can you tell us what happened on April 22, 1998 and journey to get there?
On March 18, 1998, when I was diagnosed with a brain tumor, I entered a new world. To the best of my ability, I researched, collected multiple opinions, processed intellectually, and literally dropped to my knees in prayer. Since the brain tumor in my left temporal lobe affected cognitive functions of speech, memory, and hearing, I knew it made sense to have awake brain surgery and chose to receive care at the National Institutes of Health.
During the weekend before my surgery, friends organized an amazing Saturday night party to give me a tremendous amount of deep love from over 50 people. I will never forget it. My parents arrived shortly thereafter with numerous cards and gifts, and our connection grew together in ways only possible between parents and children. My brother also joined us the day before my surgery and I was grateful for his presence.
I checked into the hospital the night before my surgery. On April 22, I awakened at 5 AM and sat at the window looking into the sky. My body was shaking and numb, and I tried to find some calm.
Time suddenly moved faster. My parents and brother arrived, and my doctors and nurses began the process. Hospital staff placed me on a table and rolled me toward the operating room. I burst into tears. My family and my friend Dan walked aside with me and rode down next to my stretcher in an elevator. We were told to say goodbye. The tension, fear, and uncertainty increased as my brain was about to be cut open.
Finally pushed into the operating room, I drifted into sleep. A few hours into surgery, an anesthesiologist woke me up for speech and memory testing. I worked with the neuro-psychologist to say the name of the image on the screen and then the one from before. The neurosurgeons identified what tumor tissue they could or could not remove.
Ultimately, I woke up while being pushed out of the operating room. One of my neurosurgeons stood at the door. I reached up, grabbed his hand, and said thank you. That part was over.
Once you left the hospital, you essentially were instructed to “manage your own care.” What did that mean to you? Where has that led you?
Each cancer patient could manage his or her own care in many ways, and some people return to their lives without new and even necessary strategies. A conversation with a doctor a few weeks after my surgery helped me develop a new perspective. My neurosurgeon Robert Rosenbaum, MD looked into my eyes and said, “Now I want you to start following the research about brain tumors. Your doctors have knowledge. You also need to become informed and be on top of it. You need to become your own advocate.” I had no idea what that meant. Yet necessity becomes a great teacher.
Fairly quickly and further into the process, I felt the power to transform challenges into opportunities to find strategies for optimal health and healing. In my journey, I’ve had three awake brain surgeries, radiation, chemotherapy, and DCVax-L immunotherapy dendritic cell vaccine in a Phase II clinical trial at UCLA, as well as many integrative cancer therapies and self-care. In my path with twists and turns, I learned to be proactive and engage in actions.
Years later, I learned about new research findings indicating that genes cause 5% to 10% of cancer, and 90% to 95% of cancer is linked to lifestyle and environmental factors. That’s so important to know about and feel inspired. I was already aware and using certain integrative cancer care strategies. I often felt I had more to learn and utilize with ongoing improvements.
How did you create your own integrative cancer care plan and what do you say to others who are trying to create their own?
Depending upon each chapter in my journey, I’ve created various integrative cancer care plans. Tending to the entire physical body, mind-body connections, spiritual vitality, social support, and a cleaner environment are features of many integrative cancer strategies.
Through each day, week, and month, I try to focus on where I am, what I need, and if I already know of resources or if I need to conduct research. I also assess my levels of self-care, and then strive to address the pros and cons. As an example about self-care, during a given week I may have 3 hours of medical appointments with 165 hours of time remaining. How should I use my time? What supports my optimal health and healing? What are my strengths? What are my current weaknesses, and how can I address and transform them? There are ongoing questions and answers that must be integrated into a healing focus.
For those with a desire to create their own integrative cancer care plan, I want to start by emphasizing that conventional cancer care is included with integrative cancer care when treatments are necessary. Depending upon the cancer patient’s condition and situation, often researching, preparing questions, gathering information during appointments, acquiring multiple opinions from different hospitals and oncologists, assessing informed decision-making, and other strategies often provide benefits. Since integrative cancer care improves quality of life and survival, the process of creating a team is paramount but sometimes challenging to accomplish. A cancer coach can be quite helpful to cancer patients and caregivers in supporting them through the journey into optimal health and healing.
What has been your role with advocacy? How has that made a difference?
Perceptions of advocacy need to be understood. Self-advocacy is essential in moving through the journey of life while being proactive, engaging in actions, and continuing to incorporate strategies. Advocacy for a cause involves efforts locally, regionally, nationally, and internationally.
When I was diagnosed with a brain tumor, I lived in Washington, D.C. working in the U.S. Congress in the House of Representatives thinking about going to law school. Suddenly I felt that was not my calling and shortly had visions to help others and make change. Since then, I’ve supported cancer patients and caregivers, fundraised for non-profits and hospitals, lobbied Congress during Brain Tumor Awareness Month and through my professional work, spoke in front of the U.S. Capitol in Washington, D.C. regarding brain tumors, delivered presentations at brain tumor events for the Congress, brain tumor conferences, cancer non-profits, hospitals, and various businesses.
Opportunities continue to evolve. Last October of 2014, I was invited to attend the Visionary Ball raising money for the UCLA Department of Neurosurgery. I delivered to the audience of over 800 people a speech with strong messages about my brain tumor journey since 1998 and featuring my experiences at UCLA with my neurosurgeon Dr. Liau, functional MRI, DCVax-L immunotherapy dendritic cell vaccine developed by UCLA currently in Phase III clinical trials, and other specific experiences while being treated at a top-notch hospital.
Anything to support through education and advocacy is extremely meaningful. The impact can be large or small. Through the journey, unknown gifts can also come forth. For me in June of 2015, I received the Tenacious Bravery Award from the Golden Portal Awards that does fundraising for UCLA Brain Tumor Program to conduct research with immunotherapy dendritic cell vaccine clinical trials. Research shows that DCVax-L dendritic cell vaccine improves cancer survival for brain tumor patients, including a few glioblastoma multiforme (GBM) brain tumor patients alive over 10 years.
Additionally, I was recently invited as an Accelerate Brain Cancer Cure (ABC2) Ambassador. I’ve known ABC2 for many years, and I really respect their work.
Now 17-years after your initial diagnosis, what message can you give not only to other brain cancer survivors, but also to anyone undergoing cancer treatment?
Conventional cancer treatments continue to evolve, such as molecular and genomic testing, targeted therapies, and emphasis regarding immunotherapy. According to scientific research findings, oncologists, scientists, reliable media, and other experts, immunotherapy—already now and much more in the future—is a pioneering treatment already with FDA approval for some types of cancer, current clinical trials, and additional research.
I also want to emphasize once again that integrative cancer care can improve quality of life, survival, and cancer prevention. People feel better. Life expands to living longer. Some individuals could possibly avoid a cancer diagnosis by using wellness strategies. My message is for people to become motivated and inspired into many possibilities. In the quest, human beings must use whole person health and healing strategies. Without a doubt, new answers emerge in directions to thrive.
About Jeannine Walston
Jeannine Walston has extensive experience in cancer education and advocacy, health care policy, conventional cancer treatments, precision medicine, person-centered care, and integrative cancer care. Her career includes work for the U.S. Congress, cancer non-profit organizations, government agencies, doctors, providers, hospitals, clinics, cancer and health care businesses, cancer patients, and caregivers.
After working in the U.S. House of Representatives as a Legislative Aide, she was a policy advocate and lobbyist for cancer non-profits while also involved in other roles.
Jeannine was chosen as the first person to serve in the Food and Drug Administration Patient Consultant Program as an advocate in the cancer drug development process, and was also selected as a consumer representative in a National Cancer Institute Cooperative Group where she offered patient perspectives about clinical trials design. Then Jeannine reached a point where her work had to include the cancer diagnosis and the whole person.
As a writer, trainer, and spokesperson, Jeannine educated the public about some aspects of health care through the National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse. In 2004, Jeannine began her business that evolved into Integrative Cancer Care for the Whole Person and Healing Focus® as a Cancer Coach, Writer, Consultant, and Speaker.