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My Seizure, Diagnosis, and Initial Treatment
The first leg of my cancer journey.
In this post, I’d like to tell the story of my cancer journey thus far and provide an update about my condition and treatment plans to my family, friends, readers, and supporters.
As I mentioned in yesterday’s post:
The first sign of my cancer was a periodic visual phenomenon I’ve had every few days for several weeks: a spot in my visual field distorts in a pulsing manner.
The first few times it happened, it cleared up by itself after a couple minutes. But when it happened again on the morning of July 31, it lasted much longer. The distorted spot also got much bigger, to the point where I couldn’t read anything on my computer screen.
I was alone in my home office on the bottom floor of our townhome, so I called my wife Catrina down to help me. I told her what was happening and talked her through searching the web for a local ophthalmologist to see. I had assumed the problem was solely with my eyes and didn’t even consider the possibility that it had something to do with my brain. I rushed upstairs briefly to take a long last look at my two daughters while they played in case I was going blind.
I tried to keep calm and keep it together while Catrina and I tried to figure out what to do, but on the inside I was probably panicking. Then random images began flashing before my eyes. I struggled to make sense of them and to make my thoughts cohere. That was the last thing I remembered until I regained consciousness and then came to my senses later.
Later, Catrina told me I stood up my, turned my head to the left, and fell face-first onto the carpet. Catrina rushed upstairs to get her phone and told my 10-year-old daughter Evie to go downstairs and roll me over to make sure my breathing wasn’t obstructed. Evie said I was unconscious when she rolled me over. Catrina called one of her local mom friends to ask what she should do. Her friend asked her husband, who thought it sounded like I had a stroke. He said to call 911 and then they themselves rushed over.
By the time our friends arrived, I was conscious but still out of it. I stood up again, walked upstairs, and sat down on another chair. I mumbled something, and Evie and our mom friend said it sounded like I was reciting a prayer. Our dad friend tried to talk to me, and he said I looked at him with a baffled expression.
I don’t remember any of this. The first thing I remember after losing consciousness was being loaded into the ambulance and asking one of the paramedics what was happening.
I gradually returned fully to my senses as I was taken to the emergency room and examined. I was stable, so they transferred me to a regular hospital room.
The doctors determined I had a focal seizure. I underwent CAT scans and an MRI, which revealed nodules and enlarged lymph nodes in my lungs and two small masses in my brain. The larger mass was in the part of my brain that processes vision, and the physician overseeing my care said that that would likely explain both the visual distortions and the seizure.
After two nights at the hospital, I was sent home. The next week a pulmonologist performed a bronchoscopy on me to biopsy the larger nodules in my lungs and my enlarged lymph nodes. The nodules were diagnosed as cancerous (specifically “adenocarcinoma moderately differentiated”) and the lymph nodes were diagnosed as having “metastatic adenocarcinoma.”
My oncologist diagnosed me with stage IV non-small cell lung cancer that had spread to my brain.
I was referred to a radiology oncologist who ordered another brain MRI that showed that, in the three weeks since my last MRI, the larger mass in the visual cortex of my brain had grown.
So, on August 29, I received radiation treatment targeting the two masses in my brain.
I also tested positive for a genetic mutation that is common among non-smoking lung cancer patients like me. My oncologist prescribed me an inhibitor drug that targets that mutation; I would receive this treatment in lieu of chemotherapy. The pills are supposed to arrive in the pharmacy soon.
So far I have not had a second seizure. However, I have had several more visual distortion episodes. My radiology oncologist warned that symptoms caused by the brain metastasis could be temporarily worsened by the radiation treatment due to inflammation. And the night after my radiation treatment, I had a particularly long distortion episode that seemed to have lingering impacts on my vision.
The morning after, I had a blind spot in my vision that made me not see some words as I tried to read. And for many days after, my right eye seemed significantly weaker than before, which made looking at anything closely with both eyes a strain because the prescription for my glasses was no longer correct. My vision seems pretty much back to normal now, but I had another visual distortion episode yesterday morning, ten days after the last one.
I’ve also had other various symptoms come and go. Thankfully my lungs still seem robust so far.
As I’ll elaborate in future posts, I have major concerns about standard-of-care cancer treatments. But I decided the potential benefits of the radiation treatment outweighed the risks given the urgency of arresting the growth and spread of the cancer in my brain. And in spite of my misgivings, I am very grateful for the care I’ve received from so many kindhearted and conscientious health professionals. I am also grateful for the health insurance that pays for most of that care, provided by my employer, the Foundation for Economic Education.
In the meantime I’ve also been trying to help my body fight the cancer naturally by adhering to a strict ketogenic diet, eating as cleanly as possible, doing three 48-hour fasts, taking vitamins, continuing to take walks every day, and improving my sleep. I also have an appointment with a promising naturopathic doctor who helps cancer patients with health plans that follow the metabolic approach to cancer, which I’ve been studying and find very credible. I’ve especially been impressed by the work of Dr. Thomas Seyfried and Dr. Nasha Winters.
I am also traveling to Boston later this week to get second opinions from and possibly transfer my care to physicians (an oncologist, a radiology oncologist, and—just in case—a neurosurgeon) at two top facilities: the Dana-Farber Cancer Institute and Mass General Brigham. To whatever extent I get further standard-of-care treatments, I want it to be delivered and performed by the best teams and facilities I can access. For allopathic care, it doesn’t get much better than the Boston area. And my sister lives there, so I will be able to stay with her and her family during my health care visits. I also hope the physicians there will be supportive of integrative care that incorporates the metabolic approach to cancer.
I’d like to close by again expressing my deep gratitude to everyone who has supported me and my family through prayers, messages, posts, visits, meals, help around the house, and donations to the GiveSendGo crowdfunding campaign that my friend and former boss set up for me. The financial support has already helped greatly with our Georgia medical expenses, and it will help further with our Boston medical expenses. It also makes it much more viable for us to seek naturopathic care, which is not covered by health insurance.
Catrina, Evie, Ellie, and I thank you all so very, very much.
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