On March 30, March 31, and April 1 from PBS stations, Cancer: The Emperor of All Maladies is a three-part, six-hour major television event based on the 2010 Pulitzer Prize-winning book The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee, MD. Other creators include Ken Burns, Executive Director and Series Creative Consultative, Barak Goodman, Producer and Director, and Laura Ziskin, Co-Founder of Stand Up to Cancer. They say, “the series is the most comprehensive documentary on a single disease ever made. This ‘biography’ of cancer covers its first documented appearances thousands of years ago through the epic battles in the 20th century to cure, control and conquer it, to a radical new understanding of its essence. The series also features the current status of cancer knowledge and treatment —the dawn of an era in which cancer may become a chronic or curable illness rather than its historic death sentence in some forms.”
Cancer: The Emperor of All Maladies shares a Story Wall from cancer survivors, caregivers, providers, and more. Feel free to read my published story called Brain Tumor Survivor Since 1998.
Brain Tumor Survivor since 1998
By Jeannine Walston
Only 24 years old in March of 1998, I received the unexpected when diagnosed with a brain tumor. After consulting with several cancer institutions, I chose to have awake brain surgery. During that time, few neurosurgeons performed awake brain surgery in people with brain tumors. Although I knew nothing about cancer, I learned that a left temporal lobe brain tumor—the center of speech, memory, and sound—needed the most careful, gentle, and successful procedure possible. I understood that awake brain surgery would help guide my neurosurgeons to remove as much tumor as possible without parts of my brain required for critical cognitive functions.
On April 22, 1998, I had twelve hours of surgery, including awake speech and memory testing. My neurosurgeons amazingly removed the entire visible tumor along with some surrounding brain tissues. In the ICU, my brain cells re-routed, my pathways began to repair, my bones mended, my jaw slowly unlocked, my body shifted, my heart trembled, my soul gave presence, and spirit held me.
During my appointment a few weeks post-surgery, I heard a transformative message. “You need to track brain tumor scientific studies for your tumor type and care for yourself,” said one of my neurosurgeons. I had no concept.
Life in a new world serves as a powerful teacher and motivator into catalysts for change. I quickly realized that more attention was necessary beyond conventional cancer treatments and emerged on a quest with highs and lows, pains and glory. With more clarity, I started to advocate for myself. As an example, it’s so important to know the actual cancer by collecting multiple opinions from pathologists and get a copy of their results. I had my first pathology report from the hospital that reviewed cells from my surgery and the neuro-oncologists told me the type and that no further treatments were recommended. With a second opinion by a pathology report from another hospital, the results were much different with a higher grade and suggestions for radiation and chemotherapy. I then had a third opinion that matched the first opinion of the cancer type and other testing results. Finally, I chose to get a fourth opinion that was similar to the first and third opinion, but adding another type although not higher grade. All of the information allowed the best way to perform quality decision-making about further treatments.
Instead of radiation and chemotherapy, I continued my life and certainly with recovery from brain surgery. Along with my brain and body, I felt emotions from calmness to tidal waves of confusion. New aspects of life and myself brought forth more questions than answers. I wanted to know myself with new exploration into my identity. Some of my parts found new insights. I also evolved to not just focus on the disease and instead to the whole person. But I was only scratching the surface.
In 2004, I was unexpectedly informed of a brain tumor recurrence. Trembling, shocked, and overwhelmed, immediate demands brought me much deeper into my healing. As I considered next steps, I developed reminders and resources for myself with getting multiple opinions about treatments and hospitals that offer the best of cancer care for my condition, research and more research, questions for appointments, being as much informed for decision-making, tuning into further quality integrative cancer providers, and self-care as some of the lessons I learned. Ultimately, in combination with a neuro-oncologist, I decided not have conventional brain tumor treatments, but frequent MRIs.
Within my next chapter, intuition led me from East to West with California as my new home. Thankfully over many years, I lived my life to discover new approaches into integrative cancer care for the whole person. That includes addressing the entire physical body, mind-body wellness, spiritual vitality, social connections, and a clean, green environment. I aspired to improve my immune system, detoxify, eating healthy foods, sleep, stress reductions, exercise, movement practices, meditation, affirmations, imagery, healing environment, spiritual awareness, soul connections, social support, and using clean environmental factors. Additionally, I worked on my feelings, thoughts, beliefs, actions, behaviors, and ego. Part of that process involves moving from the holes to the whole. I focused on healing as I discovered ways to embody wholeness. The journey requires self-awareness to identify challenged blocks and patterns. As I’ve engaged in self-discovery, mind-body transformation occurred and that process continues.
But eventually with my brain tumor recurrence I absolutely needed to have my second awake brain surgery done on September 1, 2013. Through research, fortunately a nearby skilled neurosurgeon was well known for awake brain surgery. At that point over 12 years later after my brain tumor diagnosis, new scientific findings and materials gave me improved treatments for surgery with the length, drugs, instruments, and other approaches such as speech testing without memory testing in 1998. I’ll also never forget that whenever I woke up in the operating room, an anesthesiologist always grabbed my hand. The touch supported me as everyone helped to save my life.
Once again, my surgical healing was not easy with cognitive functions, body parts in pain, and trying to further assess who I am. I needed more support, which seemed to spiral depending upon each and every step during that chapter of my journey. In dealing with MRI tests and conversations with the neurosurgeon and neuro-oncologist, it was concluded post-surgery that the entire tumor was removed. But with my next MRI two months later, about 10 percent could not be extracted during surgery. I chose not to get radiation and chemotherapy, and continued with a healing focus in various directions with integrative treatments.
Ultimately new tumor growth emerged into major necessary actions. I conducted some research, collected multiple opinions, and processed decision-making. I chose to go from northern to southern California for personalized medicine and other skills not available anywhere else. With brain surgery, the hospital’s Functional MRI specifically provides intricate, individualized results. The neurosurgeon used the Functional MRI to map out the brain in removing all of what is possible of the tumor while protecting cognitive functions, including with related testing during awake brain surgery.
On November 19, 2013, I recall being taken to the operating room and placed onto the surgical table. Within a few minutes, I drifted into sleep. For eight hours, doctors, nurses, and other providers helped to remove my brain tumor, including with awake testing. The neurosurgeon also removed some of my brain tumor for inclusion into an immunotherapy clinical trial. Ultimately I woke up with gauze around my head when the brain surgery was over and completely confused. They emphasized I was awake during surgery for testing, yet had no recollection, which happens in about 20 percent of brain tumor patients.
In total after my surgery, I’ve had additional treatments in 2014 with both radiation and oral chemotherapy from Temodar for the first time, and the immunotherapy dendritic cell vaccines in a Phase II clinical trial. The trial evaluated 3 different ways to apply dendritic cell vaccines. A Phase III clinical trial of the immunotherapy dendritic cell vaccines is also being conducted nationally and internationally. Many clinical trials have already shown improved quality of life and survival. During my decision-making, I felt strongly compelled to receive immunotherapy, and from a neurosurgeon who has been working on dendritic cell vaccines for many years with success. Immunotherapy has been used with some types of cancer already with positive outcomes. Other types of cancer are more in the beginning stages with Phase I immunotherapy trials. Thankfully brain tumor immunotherapy dendritic cell vaccines are getting much closer to FDA approval.
As my story conveys that I’ve been through so much, I am a cancer survivor and a person striving to transform any challenges into opportunities. I want to help heal myself. Along with that, I have a vision to educate and advocate about optimal health and healing. Woven within the whole person, strategies directly treating cancer thankfully continue to improve for some types of cancer through research and clinical trials. For patients, any side effects must also be reduced and eliminated. Quality of life is paramount. Personalized medicine, molecular targets, immunotherapy, and whole person health and healing systems frequently have progress forward.
The path is for each individual. Being alive and awake brings me more connected to myself and other people. I carry tremendous gratitude in living each and every day. The experience is fascinating, and I’ve entered into unusual realms in feeling my brain, body, and being. Among other sources, embodiment requires self-care, self-awareness, and self-love. Healing must come from within.
To learn more about my cancer story, education, and advocacy, including help to people with cancer, speaking at the U.S. Congress and much more, go to www.jeanninewalston.com.
