It’s been way too long since I updated this blog – only two new articles in 2022. I resolve to do better in 2023. (Also, the site was hacked and I couldn’t update for a few months until I finished repairing it today.)
So a bit late posting this update. I’m writing 52 months after receiving a terminal diagnosis in October 2018 and being given 6-8 months to live.
The past year has been incredibly busy working on the documentary, presenting at conferences, and continuing my healing. Some highlights from the year include:
- Weaning completely off steroids in early January 2022 in favor of Boswellia Serrata.
- Noticing a few of my cancer cell becoming active in March and squashing that in the bud with a nice extended fast.
- Starting Low Dose Naltrexone (LDN) in May and seeing a dramatic improvement in my brain necrosis symptoms shortly after.
- Screening footage from our documentary cast and financiers at the Metabolic Health Summit in California in May.
- Presenting with Brad at the Keto-Live conference in Switzerland in June. (We’ll be back next June.)
- A solo backpacking trip from Seattle through the Olympics without at car in August.
- My brother and sister-in-law throwing me the partyingest birthday party ever.
- Presenting with Brad at Keto Symposium in New York City in September.
- A solo trip to Indonesia to complete my Yoga Teacher Training in Bali October and November.
- A wonderful, quiet holiday season with my family in December.
December was also time for my scans and this is the first year I didn’t receive my annual leptomeningeal misdiagnosis. In fact, my neuro-oncologist seems to be becoming a believer and everyone now universally agrees that my four brain lesions are almost certainly brain radiation necrosis. Just like I’ve been saying the last three years.
A few fun updates:
- I have “increased abnormal cavitation” and these crazy new blood vessels developing in my two largest lesions. This indicates that the chunks of dead, necrotic tissue in my brain are slowly, slowly being removed by my awesome body. It’s leaving holes that are way better than necrotic tissue.
- My doctor was surprised I’m doing so awesome and admitted most doctors who look at my scans – 3mm midline shift, and 4 lesions (3.3 x 1.8 cm), (1.5 x 1.3 cm), (1.3 x 1.1 cm) and (2.6 x 1.1 cm) surrounded by crazy swelling – would assume I’m a vegetable. He says, “this is why you can’t trust MRIs to tell the whole story.” I love to open minds!
- He’s letting me wait 6 months for my next scan with the only advice to “keep doing what you’re doing.” The best I can hope for from a conventional doc.
I always say I don’t care what the scans say because I know my body best, but it still makes me giddy to get reassurance like this.
A Note About LDN
I started taking Low Dose Naltrexone in May after reading how it can cross the blood brain barrier to reduce inflammation. My neuro-onc confirmed it wouldn’t hurt me but also wouldn’t write me a prescription. I found a doctor from the LDN Research Trust with my neuro-onc’s knowledge. There is no published research that I can find about LDN’s effect on brain necrosis although it shows good results for traumatic brain injury – and my brain injury is pretty traumatic, in my opinion. I was hoping my doctor would consider publishing a case study whether it helped me or not. I stopped doing HBOT to make as clean a study as possible.
Seven month later, my symptoms improved dramatically but my brain structure issues (swelling and what not) haven’t changed aside from that cavitation. I went from 2-3 seizure a week to over 10 weeks without and, while I still struggle occasionally, my aphasia has improved.
Proof of Life
Brad and I have done a lot of podcasts to promote the doc and share my story, here’s the latest:
To a wonderful new year!!