Brad and I moved from Los Angeles to Hong Kong one week before my 40th birthday. We were ready for a new adventure and keen to experience more of the world.
Exactly one month later I was diagnosed with Stage IVB non-small-cell lung cancer that had metastasized to my brain and eye along with multiple lymph nodes throughout my chest and neck, quickly followed by more tumors in my brain, liver and abdomen.
The prognosis for lung cancer that’s spread to the brain is not good. Average life expectancy with treatment is 6-8 months and the 5-year survival rate is less than 1%. That is, it rounds to zero.
I grieved. For a couple of days, anyway. Then I started researching and decided that such a dire outcome didn’t really apply to me. People do survive this and, if anyone can do it, I can. One thousand is 0% of one million.
Six months into cancer treatment; six months before being found No Active Disease
Rocking cancer’s face
This blog started as a way to keep friends and family updated on my progress and quickly evolved into a repository of the many tools I used to dominate cancer. Over the course of my journey I’ve encountered a lot of quackery and a lot of incredibly healing therapies.
October 2019, one year after I was diagnosed, four moths after I expected to die, I was in complete remission with No Active Disease.
While I credit the miracle of conventional treatment — targeted chemotherapy and stereotactic radiosurgery — with saving my life in those early days that were so touch and go, I’m convinced it was the lifestyle changes that healed me:
- Fasting, both Intermittent and Extended
- A therapeutic whole foods, plant based ketogenic diet
- Stress reduction through mindfulness, yoga, and meditation
- Release of trapped emotion and stuck energy
- Reduction of my overall toxic load
- To a lesser extent, though I would repeat them:
- Sauna therapy
- Hyperbaric Oxygen Therapy (HBOT)
- Supplementation
- Rebounding and other exercise
I believe that cancer is a messenger and, while I almost didn’t listen until it was too late, I’m now incredibly grateful for the lessons it taught me.
The “me” who was diagnosed with terminal cancer is gone but a much happier, healthier, more alive person remains in her place.
Looking forward
It took an absurd amount of reading and research to uncover the metabolic therapies that I credit with my healing. I’m incredibly privileged to have the background and education to dig through the research, contact the doctors and scientists who are changing the cancer treatment paradigm, and attend the conferences where cutting-edge results are shared.
Survival shouldn’t just be for the privileged.
I’m now dedicated to spreading knowledge of these treatments. Normally, a cute pharmaceutical rep would inform an oncologist of the latest breakthroughs, or you would ask about it after being prompted by a commercial with terrifying disclaimers. In the case of therapies like “fasting,” there’s a lot of research, but not a lot of marketing dollars. I have no doubt these therapies will become standard of care in time but we cannot wait to start saving lives.
I hope the information on this blog can guide those facing their own diagnosis. I myself returned to school to codify the knowledge I gained during my healing so that I can provide coaching to those who need personalized guidance.
Timeline of Diagnosis & Treatment
October 2018
Diagnosed with stage 4 lung cancer with mets in right eye (1), multiple lymph nodes (8+), and brain (2). Read the story of my diagnosis here.
Weekend after diagnosis, begin first fast. Break fast eating only healing foods that would support my body while fighting the cancer.
November 2018
Radiosurgery to treat the two brain tumors on 7 Nov and started crizotinib (Xalkori) 8 Nov. Had an incredible response to Xalkori.
January 2019
Scans at the Mayo Clinic show fantastic improvement – the eye tumors are completely gone, one brain tumor is gone, one brain tumor has shrunk, lymph node tumors seem generally steady but there are 2 new brain tumors and spread to the liver and abdomen.
February 2019
Confirmed resistance to crizotinib (Xalkori). Begin attempts to secure lorlatinib.
April 2019
Second round of radiosurgery on the 2 new brain tumors 10 Apr. Begin lorlatinib 20 Apr.
May 2019
Begin MBSR class and begin incorporating daily yoga and meditation.
July 2019
Began Care Oncology Clinic protocol.
October 2019
Declared “No Evidence of Disease” (NED) at Hong Kong Adventist Hospital.
December 2019
Second opinion at SCCA backpedals to “No Active Disease” (NAD) in the body, new activity in the brain with “possible leptomeningeal involvement”.
January 2020
Return consult with 3 specialists at SCCA and UW Alvord Tumor Center reach “consensus” on either leptomeningeal disease or post-treatment radiation necrosis. I decide radiation necrosis.
February 2020
Brain and spinal MRI are conclusive: new brain tumor, no leptomeningeal disease. I’m still convinced radiation necrosis but oncologist won’t budge that it’s a new brain tumor, recommends more radiation.
March 2020
I see a neurosurgeon and get the needed MR spectroscopy and perfusion scans to prove it is radiation necrosis. Between last month’s MRIs and a fresh PET, I am finally, officially cancer free with no caveats. Except that dying brain tissue in my head.
April 2021
All four previously treated tumors in my brain have become necrotic resulting in some significant brain swelling and small mid-line shift. Evidence still indicates I’m cancer-free although there’s no way to be sure without a biopsy. My cancer tumor markers and body scans are perfectly normal.
Presently
All is steady. Minor seizures and aphasia from the radiation necrosis but confident I can heal from this as well. Sincere in my belief that cancer is the best thing that ever happened to me.
Detailed Updates as They Happened
- NED (No Evidence of Disease) isn’t the goal
- Third annual cancer misdiagnosis
- September 2021 Updates: Two Years Cancer-Free, Actually
- May 2021 Updates: Not So Fast, Cancer
- March 2021 Updates: Documentary and Return of the Cancer Edition
- December 2020 Updates: Seizure and HBOT Edition
- July 2020 Blood Test Results
- June 2020 Blood Test Results
- May 2020 Blood Test Results: Lockdown Edition
- March 2020 Test Results: Pandemic Edition
- February 2020 Updates: Intuition Edition or “My Oncologist is Trying to Kill Me”
- February 2020 SCCA Brain Consult
- January 2020 Blood Test Results
- December 2019 Test Results: Seattle Cancer Care Alliance Edition
- October 2019 Blood Test and Scan Results
- Metabolic Health Summit 2020: I’ll be there!
- September 2019 Blood Test Results
- August Blood Test Results
- July Update from the Mayo Clinic
- June Blood Test Results and an International Drug Caper
- Care Oncology Metabolic Protocol
- Making the Move to the Public Hospital
- May Blood Test Results and One Month Lotlatinib Check-in
- Compassionate Use Lorlatinib is in Hong Kong
- Being Your Own Advocate & Questioning the Details
About my Cancer
Original diagnosis October 2018: Non-small cell lung cancer (NSCLC) adenocarcinoma that’s metastasized to multiple lymph nodes in the chest and neck, the brain, and the right retina. Primary tumor was in the left lower lobe and about 5.5 cm in diameter.
Subsequently metastasized to liver and abdomen, two more locations in the brain (total of 4 brain tumors treated with two rounds of radiosurgery).
Genomic Alterations:
- EZR-ROS1 fusion
- EGFR amplification
- FGFR1 amplification
- High PD-L1 expression.
Imaging
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