Jeannine Walston is an accomplished leader, respected expert and vibrant brain tumor survivor since 1998 with passion as a cancer coach, consultant and speaker. Her extensive work includes for the U.S. Congress, cancer non-profits, government agencies with NCI, FDA, and NCCAM, hospitals, clinics, doctors, providers, other businesses, cancer patients, caregivers and the public. She has deep knowledge and insights about integrative cancer care for the whole person. Learn more at www.jeanninewalston.com.

Jeannine Walston

As a 21-year brain tumor survivor, I've witnessed different types of "awareness" during Brain Tumor Awareness Month in May. Education is essential to spread the word about brain tumors, and more strategies are paramount to address this devastating disease.

Most people do not know the reality of brain tumors. The National Cancer Institute's (NCI) 

 explained that many types of cancer death rates have decreased, but brain cancer has increased. In 2018, more than 78,000 people received a primary brain tumor diagnosis, and for those with a malignant tumor, the survival rate is less than 34%. In 2019, an estimated 86,970 people will receive a primary brain tumor diagnosis, according to statistics reported by the 

. Brain tumors are the leading cause of cancer-related deaths in children and young adults age 19 and under in the United States.

Many brain tumor patients seek better treatments to improve the quality of life and survival. Unfortunately, in the last 30 years, only four brain tumor drugs, and one device, was approved by the Food and Drug Administration (FDA), according to NBTS. Scientific research — in laboratories and clinical trials – show some promise with new treatments and approaches. However, more research is expensive.

in Washington, DC to fundraise for brain tumor research. Currently, donations total over $1,800,000 million for brain tumor research through the NBTS and 

orchestrated by the NBTS. The experience with training and lobbying Congress was extraordinary. I worked in Congress when I received a diagnosis of a brain tumor in March of 1998 and I know the importance of advocacy to create positive change.

At Head to the Hill, over 300 people lobbied Congress on 

. Some include increased funding for medical research at the National Institutes of Health and National Cancer Institute, advancing programs created by the Childhood Cancer STAR Act, more funding for the Peer Reviewed Cancer Research Program within the Department of Defense (DOD) related to pediatric brain tumors and brain cancer, and supporting the Palliative Care and Hospice Education and Training Act. Advocacy through the NBTF continues throughout the year. Explore more information 

I learned in my journey that challenges can become opportunities and adversity to actions. Embrace the movement with awareness and actions in the brain tumor arena. Support the cause. Know your brain can provide meaningful differences in transformative ways.

Articles

Learn about awareness and actions strategies during Brain Tumor Awareness Month and beyond.

Actions with Brain Tumor Awareness Month in May and Beyond

During January in Los Angeles this year, I was in a car accident in the rain. Shaking inside and crying, my physical and psychological crisis shattered me. As I processed the chaos, aspects emerged about trauma around my brain tumor journey.

I was only 24 years old when diagnosed with a brain tumor. I remember the disconnect as I tried to process my new reality while enduring the possibilities about dying. I had no idea how to deal with this lack of control. Before, during and after my first awake brain surgery in 1998, as well as over the last 20-plus years with more treatments and other factors, I’ve experienced more trauma.

Trauma can be defined in many ways, and I witnessed myself enduring post-traumatic stress disorders (PTSD). In the process, I’ve felt various types of physical, mental and emotional challenges with trauma, including many questions about my identity and safety.

I remember attending a cancer event years ago. I sat next to a woman whom I did not know named Tzipi Weiss, DSW, LCSW. She began a conversation with me and mentioned Post-Traumatic Growth (PTG), which is a term for the positive life changes that may come from trauma.

I’m grateful for the conversation that inspired me. Throughout my quest to transform and thrive, I’ve learned how PTG is a way to incorporate a bigger picture. Educated shifts with my mind, body and spirit have been a process over time. With progress, learning that challenges can become opportunities and adversity to actions, I was able to liberate myself and find more confidence with resilience.

As PTG continued in my mindset of curiosity, I conducted research. Some PTG studies of cancer patients and even caregivers showed an appreciation of life, personal strength, spiritual change and improved sense of relating to others. Those changes and experiences vary as many components occur with the pain and gain of cancer.

The levels of trauma transformed into PTG can impact not just individuals. Sandra L. Bloom, M.D., in 

Posttraumatic Growth: Positive Changes in the Aftermath of Crisis

, discusses changes in society. She wrote, “Throughout history humans striving to transform adversity into strength consistently possess a sense of moral commitment, a sense that personal and group trauma must be converted into a community asset, not just a personal asset or catastrophe. From such traumatic origins springs the co-construction or reconstruction of civilization.”

I know of people who find meaning and impact society from the cancer experience. Some patients, survivors and their loved ones have created non-profits focused on education, advocacy, research and more. Other have cultivated fundraising events, especially for research. I’m aware of various people changing their jobs and taking new directions to find their calling in life. And some individuals were working so hard and decided to take a break or quit. Other people wanted to travel, spend more times with family or share their cancer story.

Inspiration and motivation are helpful sources to impact individuals and societies. May we all evolve from some aspects of suffering and melt to a force larger than oneself. Now is the time.

Learn how the pain through the trauma of cancer can transform in positive ways.

Transforming the Chaos of Cancer to Post-Traumatic Growth

When I was diagnosed with a brain tumor in 1998 at 24 years old, I had no idea how long I would live. The experience was shocking as I entered a new world of uncertainty. Since then, I've learned a tremendous amount in my journey. As I further reflect on being a 20-year brain tumor survivor, I now know discoveries that are enabling me to thrive. Here are some pieces in the puzzle that I utilized in my quest for optimal health and healing.

Innovative Cancer Hospitals and Treatments

I've had three awake brain surgeries, radiation, oral chemotherapy and participated in clinical trials, including immunotherapy. In the process, I had treatments at the National Institutes of Health, University of California, San Francisco and University of California, Los Angeles with top-notch providers. For cancer patients, the process requires quality research, multiple opinions and informed decision-making to find the best possible answers for their situation.

Over many years, too often I was seen as a patient instead of as an individual. Now, conversations can occur with aspects of patient-centered care, personalized medicine and precision medicine. This momentum continues, including more genomic testing, genetic testing, other tests and treatments. I've personally had types of testing to find new information and approaches, as well as knowing research findings, professionals and patients who have experienced benefits.

Integrative Cancer Care for the Whole Person

In my quest, after brain surgery in 1998, I had to do more for my healing and cancer prevention. I started with complementary and alternative therapies, yet certain components were not making sense. Ultimately, I embraced 

integrative cancer care for the whole person

. That addresses the physical body, mind-body connection, spiritual vitality, social support and a cleaner environment to improve quality of life, cancer survival and cancer prevention. Integrative cancer care is important in my ongoing quest to feel better and live longer.

Positive transformation occurs through meaning and purpose. Core integration is essential for embodiment, which supports various aspects of the whole person for vibrancy. Since the beginning with volunteer and professional work in the cancer arena, the experience connects me with a source larger than myself. Now, I'm grateful to provide services as a cancer coach, consultant and speaker with motivation full of inspiration.

Along with the “highs” of feeling hopeful in my journey, I also endured “lows”: heartaches where hope was shattered with the unexpected, undesired, and unwanted. As I continued to cultivate more of myself, I've explored aspects of the mind-body connection to integrate better ways in life. The improved mindset of hope has positive levels of energy that I've incorporated through integrative cancer care for the whole person and other sources. My improved relationship with hope and actions has invigorated me to live life more fully.

and instincts. I have had powerful experiences that guided me to new relationships, work, homes and much more. As I've needed help trying to figure out cancer treatments, and other cancer-related approaches, some choices have been successful with intuition and instinct, and others not with fear and confusion. Over time, I've learned to be more aware and awake, and those levels of presence helped me to choose wisely. That involves a mosaic of strategies, such as listening, engaging in proactivity, meditation, and being in the present moment with silence and stillness. Guidance is available, and I continue to embrace levels of mystery with support in the process.

For all of us, we never know what will happen and when. Life is precious. The heart is potent and powerful to support health and transcendence with love and gratitude. That continues for me, with grace, faith, and whole person vibrancy. The strength with appreciation about one's self and life helps support the energy levels that attract better experiences. I cherish those connections of love and gratitude.

Other discoveries enabling me to thrive include more approaches and strategies. In the process, I am grateful to help cancer patients and caregivers as a cancer coach for their individualized situation. Indeed, challenges can become opportunities and adversities to actions. Many possibilities are available. Now is the time.

Since being diagnosed, I've learned a tremendous amount in my journey.

Pieces in the Puzzle as a 20-Year Brain Tumor Survivor

On March 18, 2018, I became a 20-year brain tumor survivor!

I'm extremely grateful to be here for many years! Diagnosed with a brain tumor at age 24, my journey has been profound. Since then, I've had three awake brain surgeries, radiation, chemotherapy and participated in clinical trials, including one with immunotherapy with a dendritic cell-based vaccine.

I want to share five reasons why I'm still here. Then, there is a video about my brain tumor story, with critical insights that I discovered along the way.

1. Brain tumors and brain cancer are complicated. With the size, type, location, health challenges and other components, I benefited with treatments from the most renowned neurosurgeons and neuro-oncologists. Research was paramount in that process. I found experts for my condition by hearing multiple opinions, as well as exploring clinical trials, genomic testing, targeted therapies, immunotherapy and other strategies.

2. Over time, I learned that I could not only focus on the disease. Instead, I had to understand and address the whole person. I gained clarity that integrative cancer care for the whole person includes the physical body, mind-body connection, spiritual vitality, social support and a cleaner environment, which I believe improves quality of life, cancer survival and cancer prevention. The process involves creating a plan, team and self-care strategies.

3. I've benefited from ongoing education to address my needs and help other people. Some areas include standard of care, innovative treatments, cutting-edge approaches, new ways to embody the whole person and embracing the unexpected while living in the here and now.

4. Social support has been essential in my cancer journey. My family has supported me profoundly. Friends, colleagues and even strangers also provided help in my quest for optimal health and healing. Different types of giving have influenced my experience in receiving with thanks and ongoing gratitude.

5. My calling in life has been a mechanism for change in many dynamics. I've gone through working in the U.S. Congress in Washington to the cancer, health, and wellness roles, including non-profits, FDA, (National Cancer Institute) NCI, National Center for Complementary and Integrated Health and much more in my business. Now, I'm a 

Even through the pain, I know this is my path in life with catalysts for transformation. Over time, that has created a foundation for hope and resilience.

As I reflected on some aspects of my journey, I created this video about my brain tumor story with insights that have helped me thrive. I hope it's meaningful to people with and without cancer.

Explore why I'm still here as a 20-year brain tumor survivor, and watch a video about my story with insights to thrive.

Jeannine Walston | Contributors

Actions with Brain Tumor Awareness Month in May and Beyond

Transforming the Chaos of Cancer to Post-Traumatic Growth

Pieces in the Puzzle as a 20-Year Brain Tumor Survivor

How I Became a 20-Year Brain Tumor Survivor

Latest News