 In 1998 at the age of 24, I was diagnosed with a brain tumor. My journey since then has taken me to places far and wide. My own process creating an integrative cancer care program continues. I've used my health challenge for learning, personal transformation, and supporting other people affected by cancer. As adversity contains seeds of opportunity, that remains central to my personal and professional work. Snapshots of my story here include some of my brain tumor experience, movement toward greater health, healing, and service.
Brain Surgery
After consulting with several cancer institutions, I chose to have awake brain surgery at the National Institutes of Health (NIH). Few neurosurgeons in 1998 performed awake brain surgery in people with brain tumors. Although I knew nothing about cancer, I recognized 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.
About one month after the brain tumor diagnosis, I had twelve hours of surgery with several hours of awake speech and memory testing. While the brain tumor rested against a large vein, my neurosurgeons amazingly removed the entire visible tumor along with some surrounding brain tissues.
Waking up several times after surgery in the ICU, my brain diligently generated healing pathways while other parts of me took steps to repair and recover. My brain rerouted, bone mended, skin reconnected, jaw loosened, heart trembled, body acclimated to a new environment, soul sung tunes through gateways, spirit held me.
As I rested in my hospital bed several days later, I received NIH pathology results for my tumor type—grade II oligodendroglioma. I didn't know how to say it; I didn't know what it meant. Feeling frozen and scared, I saw glimpses into the new terrain I entered, the new world I'd learn to talk, walk, navigate, and find myself anew.
Self-Advocacy
Visiting NIH for a meeting with my neurosurgeons several weeks after my brain surgery, Dr. Rosenbaum told me I was one of the most well adjusted patients he ever met. He also said that I needed to serve as my own best advocate. While he explained that NIH might inform me of new brain tumor research findings for my tumor type, Dr. Rosenbaum emphasized that I needed to track scientific studies and even care for myself. I had no concept for doing any of that.
Necessity is a great teacher. Even with successful brain surgery removing the visible brain tumor, I needed much more care for my health and healing. I began researching, exploring, receiving therapies, discovering, and taking steps toward change.
Multiple Pathology Opinions
Based on their pathology report of a grade II oligodendroglioma, NIH did not recommend radiation or chemotherapy. But, they told me to get another opinion and especially since they treated me in a surgical clinical trial. I needed to find another medical institution for ongoing care. NIH recommended Johns Hopkins. At the consult, Hopkins said they had not performed my pathology reading. While that was the most important piece of information for discussion, I was told they'd contact me with the results.
A few months past when I realized I hadn't heard from Hopkins. I called to learn that the neuro-oncologist from my consult was on vacation. Then I spoke with the pathologist directly who apologized that he had not read my tumor slides. A few days later, he phoned to explain his concern that my tumor was not a Grade II oligodendroglioma as reported by NIH and instead a Grade III mixed oligodendroglioma astrocytoma with more activity from the astro. He suggested that I needed more conventional treatments.
With shock and fear, I couldn't digest the news. Discovering I needed more treatments from a delayed pathology report several months after my brain tumor diagnosis and surgery shocked me. Although without knowledge about cancer, I knew how to assess intellectually and move on my instincts. Since I had two conflicting pathology reports, I needed to gather more opinions.
The third pathology report came from the Mayo Clinic reporting a Grade II oligodendroglioma and the fourth from Memorial Sloan Kettering Cancer Center (MSKCC) as a Grade II mixed oligodendroglioma astrocytoma with more emphasis on the oligo recommending no additional conventional cancer treatments. As MSKCC claims to have the best cancer care anywhere, and with my connection to New York City, I chose to have them monitor my tumor status with MRI scans and neuro-oncologist appointments.
Creating an Integrative Cancer Care Program
In the months after my brain surgery, I worked to recover physically, build my health, and incorporate strategies to help prevent a brain tumor recurrence. Creating a map for my own health and healing, I built a team of providers and incorporated strategies of self-care. Engaging questions about myself, life, the world, spirit, and much more, I also entered a healing journey. Feeling somewhat broken and confused, I searched for modalities to support my body, mind, and spirit. With open curiosity, I used many approaches and therapies—acupuncture, herbs, craniosacral therapy, exercise, dietary changes, holistic medical care, Shamanic work, homeopathy, energy healing, dental work, psychotherapy, brain tumor support groups, young adult support groups, incorporating clean and green products in my home, and more. Needing whole person integrative support, and working full-time in the U.S. government with a low income, I did the best I could with my schedule and finances.
Personal & Professional Connection
When returning to my job in the U.S. Congress one month after my surgery where I previously considered law school, everything felt different. As my hair grew, and scar healed, my inner life conveyed insights about my work in the world. Beginning to see in new directions, clarity slowly emerged.
Six months into my cancer journey, I became involved with brain tumor non-profit organizations. One year after my diagnosis and surgery, I participated in a brain tumor 5K in Washington, DC to raise money for brain tumor research. Also supporting the North American Brain Tumor Coalition, I lobbied Congress advocating for increased funds for brain tumor research and awareness. I delivered a speech in front of the U.S. Capitol, another speech at the Brain Tumor Action Week Congressional luncheon, and also wrote a brain tumor speech that my boss Congressman Steve Rothman delivered in the U.S. House of Representatives.
Over a year after my brain surgery, I explored new professional opportunities and felt passionate about cancer advocacy. The cancer community felt familiar, I wanted to learn, and help other people affected by cancer. For two years, I worked at the National Coalition for Cancer Survivorship and The Children's Cause for Cancer Advocacy as a patient advocate, lobbyist, and with many other roles. In the late 1990s and early 2000, patient advocates were also included in cancer meetings with government agencies and pharmaceutical companies. I was invited to serve as a consultant with the National Cancer Institute and Food and Drug Administration. Providing the patient's perspective about clinical trials, I learned about cancer treatment development and cancer care systems.
Yet I arrived at a point where I felt that my work was not comprehensively addressing the needs of people with cancer and fully consistent with my own work in the world. Seeing both professionally and personally that cancer care needs to move beyond the diagnosis and instead address the whole person, I changed my professional work. For two yeas at the National Institutes of Health National Center for Complementary and Alternative Medicine (NCCAM) Clearinghouse, I supported the government's role in educating about complementary and alternative medicine (CAM) and funding research. Learning how NCCAM advanced CAM, I saw gaps between educational support and what people affected by cancer desperately need.
Surprises & Shifts
The summer of 2003 contained both celebration for my five-year brain tumor survivorship and emergence of new health problems. Virtually overnight, I suddenly felt exhausted, fatigued, and could hardly work. Resting, seeing doctors, and trying to understand what was happening, the health issues persisted. I was diagnosed with the Epstein Barr virus (EBV). While EBV only lasts a few weeks in teenagers, the experience in adults occurs much longer. My only option was short-term disability; my body needed absolute rest. I spent over three months with EBV in bed and my body demanded it. Staring at my ceiling, I saw a vision to start my own business with writing and research services with the name Healing Focus. Although part of me planned on returning to my job at the NCCAM Clearinghouse, I simply could not. The EBV exhaustion and fatigue persisted turning into chronic fatigue; I could only work a few hours daily if that. Supported by the universe, instead I quickly acquired clients through my new business Healing Focus working when I had the energy.
Brain Tumor Recurrence
In February of 2004, one month after I started my own business and with severe fatigue, I had my six-year MRI scan. This was the first time that Memorial Sloan Kettering Cancer Center (MSKCC) had me wait an entire year in between my MRI scans moving from every three months, every four months, every six months, and my graduation to waiting 12 months. An entire year without a MRI scan felt like my own triumph and success. But my reality was not so. Not only was I told of my brain tumor recurrence, I learned that the tumor actually recurred in 2000. My neuro-oncologist that followed me at MSKCC from 1998 until 2003 consistently said I had no signs of recurrence. The reports from the radiologist state that the tumor became visible in 2000 and was slowing growing since then. My MSKCC medical records document these details. I felt absolutely overwhelmed with double shock about the news of a brain tumor recurrence and my doctor not telling me for over four years. That was their only job and they failed.
In my world turned upside down once again, life demanded me to shift my focus. My brain tumor recurrence demonstrated that I needed to go much deeper and find more effective strategies for my health and healing.
Confronting a brain tumor recurrence, and dealing with severe fatigue post-EBV, I wanted to restore my energy and find providers with therapies that I needed. Crisis serves as a powerful teacher and catalyst for change. I moved toward thinking and creating anew.
Reactivating my healing journey with supportive therapies such as acupuncture, detoxification, supplements, energy work, and other forms of health care, I then incorporated new health and healing modalities. For three weeks, I attended the Hippocrates Health Institute Life Change Program eating a raw foods diet, detoxing, and healing. Eating raw for 21 days released massive amounts of toxins and gave my body, mind, and spirit recovered strength. I went through darkness and into light leaving Hippocrates feeling amazing vitality. That included clarity to leave my eight-year stint in Washington, DC and move to California.
Settling in California three months later, I continued with some of the old even as I wanted to engage the new. With ongoing fatigue, old patterns, and little money, I struggled to create change and optimally support my health. Some of my healing involved transformation brewing in distant horizons.
For over one year, I continued working, trying to find better clarity about myself and life, as well as frequent MRI scans. Dealing with a slow growing tumor, one doctor recommended another brain surgery while several others did not. Since I experienced a brain tumor recurrence less than two years after my brain surgery, my concern was for a second brain surgery followed by a second brain tumor recurrence. Instead, I felt in the core of my being that medicine must transform the entire environment in my body and any other imbalances in my life. Since cancer care is much more than conventional cancer treatments, my research explored other options.
Hindsight is 20/20 and now wish I engaged my research much better during this chapter. Doing the best I could at the time with investigating cancer treatments and fundraising, I researched therapies in Germany and Switzerland. Ultimately I chose the Medical Center of Cologne. In June 2006, I moved to Cologne for six months of hyperthermia with Oncotherm, dendritic cell vaccine therapy, Newcastle disease virus, and intravenous infusions. While some of those cancer therapies are available at other clinics in Germany, the Medical Center of Cologne offers poor quality care. My experience taught me about integrity because the Medical Center of Cologne has none of it. Mistakes are profound teachers. I learned volumes and continue to share that wisdom through helping cancer patients.
Outside of the Medical Center of Cologne and pain I felt from my experience, somehow I loved aspect of my life in Cologne and stayed for another six months after my treatments. When I wasn't doing freelance work, I loved my life with more freedom, connection, and joy moving in my own rhythms and deeper embodiment.
But toward the end of my Cologne treatments and afterwards, some old physical problems continued and new ones emerged. I needed medicine to cleanse my body, build my system, and with activity against the brain tumor. After more research, I chose treatments at the Paracelsus Clinic in Switzerland. In the spring of 2007 during my three week stay, I received intravenous infusions, homeopathics, herbs, neural therapy, oxygen therapy, removal of heavy metals, energy therapies, saunas, Indiba, nervous system support, liver support, dental work including the removal of a root canal, and other therapies. Staying in the Swiss mountains surrounded by white light also created an incredible healing environment. While I felt fatigued during my first two weeks, at the end of my third week my vitality thrived. Along with physical strength, my enlivened spirit connected me to aspects of myself that I had not experienced since before the brain tumor diagnosis.
After Paracelsus I returned to Cologne for one month before moving back to the San Francisco Bay area. Less than two months later back in California, I returned to Paracelsus for two weeks of follow-up care as part of my treatment schedule. With many factors involved, including overwhelm between my moves and time zones, Paracelsus running behind from 2 to 4 hours daily to see Dr. Rau as they adjusted to their new electronic medical records system, Dr. Rau getting ready for his four week holiday, Dr. Rau's across the board approach to give cancer patients with advanced disease much more time compared to cancer patients with low grade disease, another doctor managing my care during my second week without adequate experience (and even as I adored her personally), one treatment with whole body hyperthermia, and perhaps other issues, I left Paracelsus extremely exhausted on every level.
The next several months became the hardest of my life. Arriving home after Paracelsus still feeling physically challenged and then exposed to mold in my apartment created absolute chaos. Even after moving into yet another new apartment, physical problems continued and then escalated. I had never felt so sick in my life. The fall of 2007 felt like the darkest night of my soul. With a range of major physical ailments that I had never experienced before, I wondered if I'd ever recover. While a MRI scan revealed growth, the symptoms did not appear associated with the tumor. But I could barely function and went deep into myself reevaluating everything.
Once again searching in new directions for cancer therapies, during October into November of 2007 I investigated the Gonzalez Protocol by Nicholas Gonzalez, MD in New York City. A friend of mine, a medical doctor with advanced lung cancer, had been on the Gonzalez Protocol for over four years. After his cancer diagnosis, conventional cancer treatments failed him. Although without a worldview for alternative therapies, he opened his perspective and chose the Gonzalez Protocol. My friend with advanced lung cancer responded to the Gonzalez treatments very quickly with tumor shrinkage and necrosis.
Through my research, I learned that the average time to respond on the Gonzalez Protocol is 18 to 24 months and his therapies do not work for everyone. I also felt hope and inspiration with his treatments. As components of the Gonzalez protocol such as diet, supplements, detoxification, and balancing the nervous system felt appealing, I applied to his program. Accepted as a patient several weeks later, I went to New York City to meet with Dr. Gonzalez in appointments over two days. Learning more about his protocol, I recognized the necessity of surrendering myself to the demanding routines of the therapies.
My supplements included pancreatic enzymes, other animal glandulars, vitamins, minerals, trace elements, and antioxidants. On the Gonzalez protocol, the pancreatic enzymes are the main anti-cancer supplement. I took about 200 pills daily and throughout the day, including in the middle of the night. As for all cancer patients on the Gonzalez protocol, my pill schedule was carefully timed, especially since the pancreatic enzymes must be consumed on an empty stomach. My supplements were common for patients with solid tumors and somewhat modified through my biochemistry determined through Gonzalez's hair analysis.
For detoxification, I performed four coffee enemas daily with two in the morning and afternoon. Every twenty days I stopped all of my supplements and either did a liver/gallbladder cleanse or an intestinal cleanse for five days.
Based on my constitution, Dr. Gonzalez recommended that I eat a moderate vegetarian diet with some fish. Due to my food allergies, my food choices narrowed even more. Everyday, I also juiced green vegetables in the morning and afternoon.
Both demanding and challenging, the routines on the Gonzalez began to help me feel stronger. My energy improved, my nervous system more balanced, my brain with better vitality, and other improvements emerged. My investment in the 3 to 4 hours required daily resulted in some returns.
Yet needing to surrender to the rhythms of the Gonzalez protocol felt hard. The pills, coffee enemas, and other routines often defined my schedule. I spent many hours on the bathroom floor, missed social activities, my inner balance, and sometimes could not travel. Although stronger, parts of me also felt fatigued and imbalanced. Gonzalez attributed detoxification to the fatigue, but that did not seem to be the case for me after the protocol.
Healing, Work, & Movement
Navigating the healing equation and traveling toward better health is not a linear process. While some components improve, others can wane and even falter. Sometimes with two steps forward, one step moves backward. Other times it is no steps forward and what seems like five steps background. But deeper levels of healing can occur without any visible progress. I continue to discover the great complexity and even mystery of healing.
With some improvements on the Gonzalez protocol, the strength that emerged gave me more energy to work. With a new professional opportunity, I began playing a key role in forming a non-profit organization to help cancer patients using my professional cancer expertise and personal knowledge. Managing other consulting projects when the non-profit started and evolving into a full-time position, I began serving as co-founder and Executive Director of the non-profit EmbodiWorks providing integrative cancer care resources for the whole person. EmbodiWorks is my passion and commitment to educate and empower people with cancer, caregivers, and cancer care providers about integrative cancer care defined in body, mind, and spirit, including social and environmental health. We also provide resources to help people navigate their cancer journey and support their needs.
Along with my treatments and work, my healing expanded in other ways. Over the last several years, I began to rediscover, reincorporate, and renew a connection with my body. In 2008 after a movement practice called Biodanza, in July of 2009 I began the 5Rhythms movement practice founded by Gabrielle Roth. Through 5Rhythms classes and workshops, I've accessed and activated amazing levels of healing. A brilliant, transformative movement practice, the 5Rhythms provides a vehicle to wholeness. Also receiving massage with bodywork over the last few years more frequently for the first time, I've been further supported in reconnecting with my body and other parts of myself. This healing continues.
New Treatments Again
My MRI scans continued during the Gonzalez protocol about every six months. Although my first scan appeared about the same size, other scans during the protocol seemed to have minor tumor growth even with some stable reports. I've been through that many times. The radiologist's report might say stable, but measurements have been bigger. Slow growing gliomas can also be labeled as "stable" between three or six month scans, but with visible growth after one to one and a half years later.
What did my scans really show during the Gonzalez protocol? Gonzalez explained that inflammation can be a side effect from the pancreatic enzymes. However, my c-reactive protein that measures inflammation was always very low. As part of his practice, Gonzalez performs hair analysis to develop supplements for each patient and track their program. One of the measurements in the hair analysis is a cancer marker. Scores run from 0 to 50. On average, new patients are at 36. My cancer marker started at 24 and decreased after two years during the protocol to a safe zone associated with no tumor growth.
I continued to feel confused by my MRI scans. Understanding that success on the Gonzalez protocol often required time, I was willing to maintain my commitment to the investment. But as I moved through the 18 to 24 months on the protocol still with tumor growth, I wasn't convinced that it was inflammation.
After two years on his protocol, I also began to feel really unwell. The supplements seemed to overwhelm my body and it became hard to take them. The coffee enemas began to often deplete me. I maintained the Gonzalez protocol for over two and a half years and then had another MRI scan. Once again, I had tumor growth. Clearly, I could no longer continue on the Gonzalez protocol and immediately stopped it. Devastated after investing so much time and energy into another cancer protocol, grief overwhelmed me.
Resiliently redefining my direction to optimally support my health and healing, my next step was clear. I chose the BioMed Clinic in Germany with success in treating brain tumor patients and other types of cancer founded by the intelligent physician E. Dieter Hager, MD, PhD. Traveling to the BioMed Clinic in Germany to begin their cancer treatments with Friedrich Migeod, MD, my therapies include hyperthermia with Synchotherm, boswellia carteri, Thalidomide, mistletoe, thymus, other supplements, and intravenous infusions with Vitamin C, glutathione, and selenium. The therapies also allow me to work from my computer when I'm in Germany. Offering a competent and compassionate form of cancer care, Dr. Migeod and his staff also have integrity. That is a very refreshing experience for me. After receiving BioMed treatments during several visits and continuing therapies when I'm home, the tumor appeared the same size for six months.
But change has occurred again. A new chapter in my brain tumor journey emerged. My most recent MRI scan the end of July 2011 shows the brain tumor recurrence size requires a second brain surgery. I worked extremely hard trying to support my health and healing with integrative cancer care while trying to avoid another surgery cutting my brain again. Yet to stay alive, that is what I must do. On September 1, 2011, I had awake brain surgery at the University of California San Francisco (UCSF) with Mitchel Berger, MD.
My second brain surgery was extremely successful. Awake brain surgery by Dr. Berger removed the entire tumor. He saved my life and I'm beyond grateful. Through the UCSF Brain Tumor Board with my neuro-oncologist Susan Chang, MD, no additional conventional treatments were recommended. MRIs will be ongoing. For the remainder of 2011 and into the next year, my post-surgery recovery is supported through an integrative cancer care team and my own self-care. That has involved acupuncture, osteopathy, foods, supplements, infusions, meditation, stretching, movement, exercise, massage, and more.
The Healing Center
When my cancer journey began in 1998, fear of my own mortality rattled me to my bones. Now over thirteen years later after brain surgery, a recurrence, over 30 MRI scans, many cancer therapies, healing modalities, introspection, study, and resources that I've encountered, my own strength is grounded in new knowledge, personal transformation, and self-care. This includes how I embrace adversity as opportunity, seeing healing as a never-ending road, and life as a spiritual journey.
With great passion and commitment, my own brain tumor journey fuels me to help others affected by cancer. Central to my purpose, serving people with cancer transforms my suffering by melting my pain into a force much larger than myself. Both interconnected and inspired, I continue my work in the world through EmbodiWorks providing integrative cancer care resources for the whole person.
Other cancer stories and articles by Jeannine Walston
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