December 2019 was the first time I visited Seattle Cancer Care Alliance (SCCA) on my way from Hong Kong to visit Brad’s family in Austin for the holidays. I was looking for a second opinion on my “no evidence of disease” diagnosis in October 2019. While SSCA was initially reluctant to give me fresh scans, they ended up calling the morning we were leaving for the airport to ask me to return right away. They’d found lesions in my brain that they were convinced were Leptomeningeal disease – metastasizes from brain to the membranes around the brain. Without treatment, this diagnosis carries an average survival of 4-6 weeks. With treatment, I could survive 3-6 months. They wanted to treat with radiation right away.
Brad and I talked it over and decided to move forward with our plans of Christmas with family in Texas and New Years meditating on the beach in Thailand. Six weeks went by and I wasn’t dead. In fact, I felt great. I paid for the special brain scans in Hong Kong to prove that my lesion was post-radiation brain necrosis. If I’d gone forward with the recommended radiation, it would almost certainly have killed me. (Read the story here.)
I returned to SCCA in December 2020 after my first seizure in September 2020. Again, the team there was horrified by the four lesions in my brain – neverminded that they were located in the exact same places as my four previously treated tumors. Again I was given a diagnosis of probable Leptomeningeal disease. Again I chose not to follow the recommended conventional advice and had a great year of healing.
And so it is that, after my December 2021 scans resulted in doctors screaming “brain tumors are back, treat now!” I’m a little less concerned.
Granted, things have been a little more challenging in the brain departments this past year but I was recently able to decrease to 1/8 my previous dose of steroids. It makes sense to me that, with one eight fewer anti-inflammatories, I’d have a little more inflammation. My seizures have been more severe much much less frequent.
Luckily, my wonderful neuro-oncologist agrees with me that this could be continuing radiation necrosis. In fact, his advice was to get more Hyperbaric Oxygen Therapy (HBOT) despite having been a sceptic when I suggested it a year ago. I can’t tell you how much I respect that change of mind and willingness to evolve with the evidence.
Shortly after this month’s scans I did get my first blood tumor marker test since April 2021. My US doctors don’t approve of the blood tests but they’ve tracked my cancers perfectly since the beginning. For the first time since my second batch of brain tumors in April 2019, my CA-125 has exceeded the normal limit. It’s currently 39 with a normal of 35; it was over 450 at the time of my last tumors). My CA-19-9 is 10, its lowest level to date and well below the normal of 26. It was over 3500 at the time of my last tumors and has hovered just above normal in the past.
In other words, I’ll keep monitoring these markers but I’m not worried yet.
I certain I do have some cancer cells floating around in my brain just like everyone has some cancer cells in their body. (Not me, though, my body is inarguably cancer free.) The three-plus years since my terminal diagnosis have taught me a lot about how to handle those cells. I just can’t wait for a little more brain healing.
In the meantime, I’m doing my best with regular walks, yoga, meditation, HBOT, sauna and my sweet puppy.
Happy holidays, everyone, and here’s to an amazing 2022!