You’re Diagnosed with Brain Cancer, What Happens Next?
Hi, I’m Ethan.
I have a brain tumor, and if you’re reading this, you or someone you love (or at least, really like) probably does, too.
Briefly, my story: In June of 2017 I experienced a grand mal seizure in my sleep, went to urgent care and found a tumor in my brain the size of an egg.
I was 33. This *gestures wildly* wasn’t supposed to happen. It wasn’t in the plans.
When we found the “egg,” the doctor told me with glee that I was in for a treat. I’d need to have brain surgery and be awake for the procedure while the surgeon scooped out my tumor like “a piece of flan” she said in a how cool is that kinda tone.
If that wasn’t enough of a shocker, while strapped into a gurney on ‘seizure watch’ in the ambulance riding from urgent care to the hospital ER, the EMT broke the ice by saying “So, you got cancer, huh”. And thus the dreaded ‘C word’ entered the picture.
Lots of additional news and new normals unfolded over the course of that summer. I’m deeply grateful for all the friends and family who stayed by my side as I navigated unfamiliar waters and joined the ranks of all the brain cancer peeps who came before me. You can read up on much of that experience in my previous posts.
Now, six years since that fateful season, I’m often asked by friends and strangers if I can help them or someone close who just faced a similar brain cancer diagnosis (I am an Anaplastic Astrocytoma Grade III with an IDH Mutation, BTW).
Up until today, I’d take these calls as they came, often writing long treatises over email and text describing what I did and how maybe my experience can support them.
These unfortunate requests have happened frequently enough to warrant a proper post outlining what I did (or what I remember doing) and have continued to do since discovering an alien living in my dome.
Everyone comes from a different baseline and has different opinions, comfort levels, backgrounds, beliefs and ideals and my experience here is purely my own to share and offer as one way, one guy, with a ton of help and resources, approached this difficult situation.
— —
1. I Embraced the Standard of Care and Western Medicine With Optimistic Skepticism
I grew up with Dr. Dad at home, and he’s often my first call when something strange is happening with my body. That said, over the years I’ve struggled with the patriarchal, economically driven, non-holistic nature of Western Medicine.
I said yes to surgery, chemo, and radiation, despite the risks and downsides that exist.
I say “optimistic skepticism” because I went into these procedures and treatments hopeful that they would work, and aware that I wasn’t going to only rely on my allopathic doctor’s recommendations.
We were gonna give this tumor the full-court press. The Works.
And here’s where things get a little… fluid.
There’s an entire book I could write on why Western Medicine isn’t the ideal pathway for healing, but for this piece I’ll focus on the well-researched science of the placebo effect. Essentially, when we believe something will cure us, even when it’s just a sugar pill placebo, it often does. We have proven this through Western Medicine time and again.
The takeaway here is that whatever I did to address my brain cancer, I chose to believe in it fully. That meant trusting the standard of care from a Western perspective, and believing that alternative methods could work as powerfully, too.
2. I Went Public With My Diagnosis From The Get Go
Personal health is a private thing (I mean, HIPPA, right?) and sharing struggles loud and proud isn’t always the move. But sharing my diagnosis with my extended community was crucial to getting the best care and the best support, especially through the initial phases of treatment.
I asked for mail from friends who wanted to connect and received tons of it while in the hospital recovering after surgery. Every note was an affirmation of a relationship, a prayer for healing that doubled down on my motivation to live beyond this dis-ease.
Sharing with folks up front also led to resources and introductions within the healthcare system that guaranteed my access to one of the best surgeons in the country (Bob Carter @ Mass General Neuro), amazing nutritionists, healers and others who could help me get better and navigate this wild experience.
Along with notes, I got some sweet gifts. A friend sent me the book Blessed With A Brain Tumor which became a powerful resource for me as I began to recognize the many ways this diagnosis was supporting my emotional and overall growth.
3. I Took Time To Heal Offline
The doctors thought stress was a major factor in my tumor growth. That was enough to compel me not to open my laptop or turn on the news for at least 6 months after surgery. I engaged directly with friends and some texts and shared email updates with the help of my mom and other friends using a list of contacts I already had and others who reached out.
Staying off screens (TV too) helped me avoid stressors and refocus on my body and the natural world around me, the tangibles that I could touch and deeply feel. I became extremely sensitive to stimulus after surgery and found respite in the calm of natural environments, meditation and slowing down.
I took time off from working, which definitely helped with my stress levels.
My only priority was to heal, and unsubscribing from the screen and the rapid stimulus of media helped me do that.
4. I Went Keto For Cancer, Began Intermittent Fasting and Tried Some Alternative Stuff
During my research, I read that tumors feed on sugar, and that it would be possible to effectively “starve” it if I went on a super low carb, no sugar diet.
After surgery, I found a nutritionist in LA who helped me transition into a strict ketogenic diet alongside an intermittent fasting protocol.
This was not your typical Crossfit bro keto diet — this was a therapeutic approach that would nourish me and act as an adjunct therapy to my chemo and radiation. I studied the work of Peter Attia, Valter Longo and Andrew Scarborough and learned a lot about the brain health benefits of switching my energy source from sugars and carbs to healthy fats.
Going keto to treat brain cancer specifically is very challenging; the goal is to get down to about 20 net daily carbs and as much fat intake as possible. I limited my eating time to an eight-hour window, only consuming foods between noon and 8pm and slept as much as I could so I wasn’t starving through the mornings (sleep also heals).
Eventually, I started working with Alison Gannett, who coaches people through Keto for cancer and provides great recipes for meal planning. In order to ensure success with the diet and Allison’s approach, I got my nutrition genome, took a large panel of regular blood tests and counted my daily macros.
This quickly became a major effort. I would say that for the first three years after my surgery, I was in strict keto mode. My discipline yielded huge changes:
- I dropped 30 pounds of bloat and fat within a few weeks
- I started to look and feel much younger than my biological age
- I felt super clear in my body and mind
- My tumor didn’t grow! (tough to say why, of course)
- My focal seizures — a side effect of surgery where my leg spasms for a few minutes — happened less frequently
But there were downsides:
- It was tough to eat out, go to house parties, or even be away from home for more than a few hours because my diet was so limited.
- I became very strict and rigid with my diet, to the point where I was afraid that if I ingested a gram of sugar my tumor would immediately grow (not a healthy perspective!).
- The diet can be a little boring, because there are so few things you can eat.
After about 3 years of strict keto adherence, I eased up. It started with a pasta night once a quarter. Then some dairy snuck in. Now, I’m much more flexible in what I eat and would consider my diet simply “low carb.”
The blood panel I was doing was designed by Dr. Nasha Winters who was also coaching me on overall health using her terrain 10 program. She recommended I begin the COC protocol and take LDN (Low Dose Naltrexone) which I did. Both of these efforts increased my prescription drug intake and cost (my regular docs only had me on Keppra for seizures, nothing for tumor maintenance).
Dr. Nasha gave a long list of recommendations, including trying hyperbaric oxygen treatment, exploring Vitamin C IV drips, taking lots of vitamin D and DHA, meditating regularly and avoiding EMFs as much as I could. I took her advice on all of this, some of it stuck, some of it didn’t.
I didn’t find IVs and the hyperbaric oxygen chamber to be worth the squeeze, but my supplement game is on point.
Some other alternative practices that I felt were useful in my overall healing, either physically or emotionally:
- taking psychedelics with a guide / support
- regular massage especially focused on gut and digestion
- meditation (I went on a 4 day silent retreat)
- working with energy healers to clear my energetic body
- physical therapy
- journaling
- talking to psychics and spiritual healers
- working with tarot or oracle cards
- having crystals around the house
- not using a microwave
- replacing my Apple headphones with EMF protective headphones
5. I Started Therapy
Facing a cancer diagnosis is a mortality check; it’s a tectonic life change that can completely shift everything. It can also loosen a lot of gunk that we hold in our bodies and I quickly realized I needed to develop some tools to understand that gunk and get it out.
Talk therapy is one form of emotional and mental health that has been instrumental to me. When I started looking for my first therapist, I took my time and did sessions with about 8 or 9 potential candidates first. I didn’t settle for someone who didn’t feel right, I waited until it felt aligned for me.
My therapist helped me work through a lot of areas of dis-ease in my life. She helped me face mortality and explore it through my art practice. She also helped me learn how to build healthier relationships with myself and the people around me so that my community felt life giving, not taking.
Though I’m no longer with that first therapist, I continue therapy (and couples therapy with my wife). After 5 years together it was time to find a more affordable option and get to know someone new.
6. I Learned How To Love Myself Through Perfect Days
Dealing with cancer isn’t that sweet and all of this stuff makes it incredibly difficult to work, have a family or really do much else besides try to get healthy. I was super fortunate to be able to clear my plate of most of my major short term responsibilities. I left the company I had co-founded with a small buyout from my partners that was enough to cover my single-guy 2017 LA living expenses for a year.
I relished the community I had cultivated before and through my diagnosis and many friends joined me for appointments, walks and talks. Eventually as my days took on a new rhythm, I started to focus on what would make them as enjoyable as possible. Being social was key, so was coffee which I would drink with an extra fatty oil and raw egg keto milk at noon as my first meal of the day. I found time to meditate, ride my bike, take public transit and most importantly, I began making art.
As I got in touch with the things that made me happy and practiced them with regularity, I discovered my perfect day. This discovery was encouraged by a spiritual teacher I saw shortly before my chemo and radiation was about to begin. He told me to find what would constitute my perfect day and practice those things as much as I possibly could.
Eventually these simple pleasures led to living dreams. At the end of 2017 I bought an old sports car, painted it in a wild style and drove it down to Cabo and back with my dear friend Daniel. We documented the experience here and with a gallery show of Dan’s photos, the car and artwork I made to commemorate it all.
Finding the perfect day helped me connect with my internal compass, it became a path to self-discovery and self-love and supported my evolution into becoming an artist. Since 2017 I’ve painted over 9 cars and met my wife on a road trip across the US in one of them. That simple practice of finding perfect days grew to realizing my dreams of art, adventure, romantic love and now a family (our son Rhodes was born in November 2022).
7. What I Wish I Knew Back Then
There are a few things I wish I had known about logistically, though I’m not entirely sure they would have changed my course much.
Xcures is an interesting platform to connect patients with clinical trials and I found them and the Al Musella Foundation to be valuable resources in finding relevant trials and getting into them.
I avoided meeting others with my diagnosis for a while. Eventually, I started to meet folks and made some great friends. While it wasn’t my path, I think the Cancer Support Community can be amazing for many.
— —
So it’s been six years, I’m married and a dad now. My life has grown and changed in many ways and I can look back on my diagnosis with gratitude and awe. I get plenty of reminders that this thing is sitting dormant in my brain. There’s the daily medications, the focal seizures — which can come often with stress — and intense migraines, the bi-annual MRIs and all the alternative health stuff I continue to do (acupuncture, therapy, supplements…).
Since 2017, I’ve done a lot to explore my relationship with cancer, dis-ease, health and mortality. I’ve made art and paintings, hosted countless salons, workshops and podcast convos, taken psychedelics, done acupuncture, tried longer 72-hour water fasts, shifted back to a more typical diet, done a lot of Pilates, traveled, gathered people to sing together, I’ve lived life.
My hope is that this is a solid resource for you to live your life regardless of what the doctors tell you is going on. Feel free to drop a comment if you have questions or align with this in your own experience.
Remember, you’re in charge of your own delicate delicacy of a body. We don’t get these things for very long, might as well enjoy the ride, brain invasions and all.
