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Home My Story Four Year Anniversary Update

Four Year Anniversary Update

by Maggie Jones

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.

Remember this? I like how they didn’t even bother labeling all my tumors in the first scan.

The past year has been incredibly busy working on the documentary, presenting at conferences, and continuing my healing. Some highlights from the year include:

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.
My second largest lesion. On the right, the cavitation. On the left, the swelling around it. This is the lesion that affects my language center and causes periodic difficulty speaking, writing… sometimes, after a big seizure, I struggle with reading and counting past 11. 100% of the time I struggle with spelling but that might not be entirely new. 😉

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!!

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