Holy smokes! I can’t believe I’ve gone six months without an update! I guess I’ve been too busy enjoying life.
Since my last update, Brad and I left Scotland to stay at our friends’ massive, ancestral summer home in the Austrian mountains that the family wasn’t able to use this year. It was so beautiful and restorative: daily walks to the nearby waterfall, a short bike ride for groceries from the local farms, lazy days watching paragliders land in the field out back, and some super fun daytrips to Salzburg and Hallstatt.
On a weekend trip to Vienna we absolutely fell in love with the city and decided to rent an apartment there to spend the rest of the time allowed by our EU visa. Meanwhile, we’d work on a way to extend that visa and possibly move there semi-permanently.
Unfortunately, the day after we moved in to our beautiful Viennese apartment, I suffered my first seizure.
At first I didn’t know what it was. My right hand started feeling tingly and numb while Brad and I were at the grocery store. I’d experienced something similar to this back in Hong Kong and let Brad know that it was happening again. We checked out and walked home where I decided to meditate for a bit.
During that meditation, I noticed that I had fewer thoughts than usual. At the same time, it was significantly more difficult to concentrate. After about 10 minutes I went to join Brad in the kitchen to eat lunch. At this point, the right half of my face was numb but I wasn’t too concerned until I tried to talk to Brad and realized that my speech was heavily slurred.
Numbness on one side, slurred speech… these symptoms resembled those of a stroke so I took two aspirin and walked to the nearest hospital, less than 10 minutes away. During the walk, my symptoms – including the slurring – ebbed and flow, fading away for a minute before returning.
This was during “Zeiten von Corona,” of course, and as soon as we tried to enter the hospital the woman in the empty lobby started yelling at us in German that we couldn’t come in. I had been a little nervous until then but, faced with this angry response and the possibility of not getting medical care, my anxiety came on in a rush and I started sobbing.
The woman softened and let us explain the situation. Three extraordinarily kind nurses took care of us but at this point my anxiety was so high that the symptoms took off. There were moments when I couldn’t speak and, when one nurse asked me to repeat, “big blue sky,” I struggled for a moment before I burst into tears.
After exhausting other options, they called an ambulance to take me to a nearby hospital with a stroke ward.
Brad fought to be able to come with me in the ambulance and I’m so grateful he did. It was on that ride that, in addition to not being able to speak, I started forgetting words. While en route for an MRI a practitioner trying to calm me pointed too my tattoo and asked what it was. Of course, this prompted fresh tears because, not only could I not explain what it was, I couldn’t remember the word “tattoo.” I just had an empty place in my mind where my words had been.
In the MRI tube, I struggled to remember the names of the people I loved and recited them in my mind, repeating them like a mantra in the hopes I wouldn’t forget them. After 20 or so meditative minutes on the table, other words began to return. As I left radiology, I was able to speak enough to ask the native German speakers helping me the word for tattoo. They knew it, of course, and I was able to say it haltingly.
Less than 2 hours after the tingling in my hand started, my body and mind had returned to normal. Mostly. That night, alone in the hospital, I intended to entertain myself by sending emails. Sadly, I couldn’t write. I finally knew the words but it was an enormous struggle to associate them the letters that represented them. I don’t know if this was a lingering effect of the seizure or, more likely to me, a side effect of all the drugs they pumped in me. I felt a lot like I did while on morphine following a procedure in my pre-cancer days.
The very kind doctor of the stroke ward had to break the hard news that the MRI had shown lesions in my brain and I probably had cancer. I struggled to explain that “post-treatment radiation necrosis is identical to cancer tumors in an MRI but mine has been differentiated with MR spectroscopy and perfusion.” I was still struggling to say “big blue sky.” I agreed to follow up with an oncologist.
The diagnosis was “epileptic seizure” caused by the lesions and associated edema in my brain.
A blood test the following week showed that my cancer tumor markers were still in the normal range, hooray!
I’d long had a PET-CT and MRI scheduled in Vienna in early October that happened to be about 3 weeks later. I’d already had my MRI at the hospital but was extremely curious to know what was happening in my body. This would be the first PET-CT since March in Hong Kong.
The scan was clear! All they could see was residual scarring in the left lower lobe where the primary tumor had been and various foci or cysts that have appeared in previous scans and are considered benign.
Best of all, they did a PET of my head, which I’ve never had done before, and were able to confirm that the lesions in my brain aren’t metabolically active, more evidence that they are caused by radiation necrosis and not cancer progression.
Treating the Radiation Necrosis
Remaining cancer free is amazing – and the Viennese oncologist who interpreted my scans used that exact word to describe me – but radiation necrosis is no joke. It can be fatal on it’s own. It’s also likely to cause more cancer growth. It was time to get serious about treating it.
We’d moved to London in March with the intention of pursuing hyperbaric oxygen therapy (HBOT) there. Sadly, all the clinics closed for lockdown the weekend we arrived and London was renewing lockdown just as we were researching options in September. I know it’s readily available in Thailand and there was a dreamy-looking clinic on Bali but both Thailand and Indonesia had closed their borders.
HBOT isn’t available as a service in Austria – or most of Europe – but high pressure, medical-grade chambers are legal and available for private sale. However, our EU visa would expire at the end of October and we can’t travel with a chamber. Plus, we priced them out around €45,000.
Ultimately, we decided to move back to the US where Brad’s generous sister offered her empty condo for us to stay indefinitely and I had found a used HBOT chamber with just enough pressure to meet my needs.
Brad and I have been settled comfortably in Seattle since late October and are so happy here. As a bonus, my brother and his family also live here. It couldn’t be better for what we need right now.
Of the eight specialists who have weighed in on my brain situation, my absolute favorite is here at the Seattle Cancer Care Alliance. He agrees that I’m probably dealing with necrosis, not cancer progression. His preferred treatment is to put me on steroids and anticonvulsants. Like, for the rest of my life, with the only goal of managing the seizures. I desperately want to at least try to reverse or stop the progression of decay in my brain.
My plan is to complete at least 60 “dives,” or sessions in the hyperbaric chamber, and see it if there’s been improvement when I get new scans in January. That will time nicely with the start of a new insurance deductible year.
I promise I’ll write a post about my HBOT protocol for radiation necrosis soon.
After that initial seizure my speech only returned at about 98% but I didn’t have any other symptoms. The day after we arrived in Seattle I had another small one. Since then, I’ve had several small ones. They can be a little anxiety-inducing only because I know my brain is malfunctioning but they’re really very mild.
The usual progression is that I’ll feel a lot of weird focusing of energy around my throat and tongue throughout the day. That’s how I know it’s coming on. It can be difficult to swallow and speech becomes more challenging. I have this feeling a little more than half the time these days. Sometimes I can stop a seizure from happening by chilling myself out with deep breathing or yoga. Singing or chanting seem to really help. Otherwise, the tension will build to where my tongue starts spasming. The spasms can last for five or more minutes. More recently, less than a minute. The last one, the day before yesterday, was about five pulses and done. After the spasms pass, I might experience a little tingling in my right thumb and/ or index finger.
Unless anything changes, I’ll continue my current routine and have fresh scans in January. My biggest priorities each day are:
- HBOT – 30 minutes to come to pressure, 5 cycles of 20 minutes with oxygen, 5 minutes without, 10 minutes to decompress. Altogether, I plan for almost 3 hours which is a big part of the day.
- Meditation – Neuroplasticity is real. My time in the HBOT is spent in meditation alternating pranayama, Buteyko breathing or chanting during my mask-off time.
- Exercise – I’ve been vigilant about hitting 10,000 steps a day and getting at least an hour outside. I’ve taken up jogging for the first time ever.
- Yoga – While I used to practice daily without exception, I really only get some good stretches in about two or three times a week with everything else going on.
- Fasting – Brad and I have kept to our schedule of water fasting Sunday night to Tuesday night every week and until Thursday night once a month.
- Supplements – My supplements have changed a lot as I try to reduce my pill load while also keeping my SIBO under control (it is!) and balancing my thyroid (it’s not). I just started taking collagen this week in hopes it might help my body re-build blood vessels to the rotten parts of my brain.
- Diet – Well, keto was originally developed to control intractable pediatric epileptic seizures so it seems like the right choice for me. I’d transitioned to more of a low carb, whole foods plant-based diet in Austria to help with my gut and hormones – still no grains but occasional legumes, fruit or tuber. Now I have a reason to get strict again.
The rest of my day is spent strapping Brad in for his dives and working on the book and documentary. You can see why I haven’t had a ton of time to post. I’m starting to find a better schedule, though, so expect more soon!