My Beautiful Brain
There are some battles that can only be fought on your knees – usually when you come face to face with your own powerlessness and the only moves you have left are to bow your head in reverence and clasp your hands in prayer. Not the once-a-week-in-church kind, but the kind that eclipses piety and rises from your trembling, tenderised, broken-open humanity like a memory and a thirst.
There are only a few times in my life that this has happened – most recently and notably the day I got my initial brain scan results, which was, undoubtedly, my darkest hour. Ever. I recall it like an old home cine film of my childhood, vivid with scratched scenes of indelible memories, each one traumatic and undiluted by the passage of time. As if I’ve tried to push it backwards into a far-off distant country I don’t want to visit again, but it keeps on visiting me.
Yet it was only five months ago.
I was already on a seemingly unstoppable spiral into oblivion when I received the news. By then I knew about the tumours in my right lung, lymph nodes, neck, spine, shoulder and ribs. I was in pain and fear, each holding hands with the other and exchanging places over and over in a perfect dance. I didn’t think I could sink any lower, feel any frailer or shake any harder. I was at my limit.
I went to meet my oncologist that day to plan the radiotherapy on my neck. He wanted to explain the process, schedule my appointments and make the almost suffocating mask that straps you to the same position on the table for each treatment in order to ensure the laser hits the right spot. John was working that day so I lined up a play date for Gabriella and drove to the hospital alone.
Even though I had pushed for a brain scan because I knew something was wrong, I wasn’t expecting the results that day and never anticipated how devastating they would be. My oncologist “happened to receive the report that morning” and proceeded to tell me what it said.
I was sitting at the side of his desk with my back to his office wall and no one to reach out to, as had been the case for all my other scan results. His words blur into non-sentences in my memory: “unfortunately… metastases… brain lining… brain tissue… multiple… small… inoperable… radiation… whole brain… urgent… start soon…”
My eyes broke like a dam. I was inconsolable. The fear and pain stopped dancing inside me and poured forth. He hardly knew what to say and I tried to stop crying if only to relieve him of his awkwardness, but couldn’t. The tears rolled down my cheeks like monsoon rain on glass windows. Words failed me for several long minutes. What could I say to make the tsunami turn around and drain back into the ocean? How could I un-hear what I had heard?
“How many tumours?” I eventually asked, still chasing the details of my condition as if they held the key to its impossible cure.
“Too many to count,” he replied, with a tenderness in his voice that felt like an arm wrapping itself round me so I could weep on its sleeve. “Sorry.”
After a while I stood up to leave, but was reminded I had to leave my car in the hospital car park so I sat down again to figure out how to get home. He stepped out of his office and a few minutes later his secretary walked in to offer me a lift. I accepted it without hesitation and pulled myself together enough not to scare her while she was driving. It was early evening in November and dark outside. It was dark inside. It was dark everywhere.
Forty minutes later I was sitting on the floor by a log fire in my living room waiting for John to come home. I couldn’t phone him or call my parents. I couldn’t stand or move or speak.
My brain. My precious, complicated, wise, worrying, poetic, funny, visionary, creative, flawed, fearful, loving, brilliant, exasperating, beautiful brain. Riddled with more tumours than they bothered to count.
They wanted to radiate it, indiscriminately – not target the tumours (too small and too many), but the whole brain. Apparently this leaves you bald for years (if you live that long) and, quite often, permanently. Far worse is how often people say after full brain radiation, “I’m not the same person anymore.”
But then the people who don’t have it are often not the same either. The vision in my left eye was already compromised and, while I hadn’t wanted to admit it, I was also confusing my words and forgetting how to spell. So either way it seemed I wouldn’t be Sophie for much longer.
I have dedicated my entire professional life to liberating people from the limiting beliefs, harsh judgements and inaccurate perceptions that march us into unnecessary pain and suffering. I have worked harder than most for lucidity of mind, clarity of vision, the ability to draw back the thick curtain of falsehoods that veil life’s possibilities and drink from the deep well of Life As It Really Is.
Now my lucidity was under attack and the possibilities I rely on, even when I can’t see them, melted like butterfly wings in angry flames. Without my mind it was game over. Time to go Home.
I used to think people prayed on their knees as a sign of reverence to a higher power, an act of humility. Now I see how sometimes we’re brought to our knees by the events of our lives that we may at last turn our faces to the Light we have never fully bathed in. We pray not to reach out to God, but to let Him in.
That evening I prayed with an unfamiliar ease and urgency, not questioning its content or the fact that I prayed at all. I prayed not to be saved, but to be spared. Not to survive, but to go out with dignity, as Sophie. To stay myself, my hard earned self. I prayed neither with reverence nor hope nor desperation. I prayed with sorrow, surrender, and sheer bloody faith.
By the time John came home I was a calm sea after the storm. Grief-stricken and gutted, but steady on my feet and able to rest in my beloved’s arms. Imagine doing this without my babe, I thought. Imagine doing this alone. My situation was excruciating, but I was cradled in love that picked up all my years without him and brought them in from the cold.
In the days that followed I made some tough choices:
I was given steroids to reduce the inflammation in my brain, but recognised the side effects of taking them and decided not to.
I was advised to start brain radiation in December, but asked for this to be delayed until we could determine if the drug I had started taking for the rest of my cancer might penetrate my brain.
I contacted two cancer clinics abroad to see if they could help, both of whom said they would only take me if I first got rid of my brain metastases (through radiation), but I continued to resist that option.
I emailed Dr Dana Flavin to ask if she could help me avoid having my brain fried. And God bless her she popped an email back saying, “Yes. Boswellia Serratta and Berberin. 800mg, 3 times per day.” Which I ordered at once.
I dropped anchor in the fact I had cancer in my brain and continued, as best I could, with my life.
A few days ago, a week or so after Easter and five months after my darkest hour, I received my latest brain scan report, which described an “excellent response to treatment” and was summarised as follows:
“No metastases detected.”
“No metastases detected.”
That is to say zero, zip, nil, nada, none. At this point in time, without radiation, my beautiful brain is cancer free!
How did that happen? Pharmaceutical anti-cancer drugs? Natural supplements? Organic vegan diet? Chinese herbs? Rife technology? Cannabis oil? Divine intervention? Dedicated commitment to my path of healing? All of the above, I imagine.
Does this qualify as a miracle? Probably not. But it is as miraculous to me as the arrival of my daughter after I was given a 5-10% chance of conceiving her. It is as miraculous as jumping on a bouncy castle with her on the 5th birthday I didn’t think I was going to see. It is as miraculous as an answered prayer.
I still have cancer in my lung and bones. My prognosis remains ‘terminal’. But I told God that evening that I could walk this cancer road if I had my mind, if I had Sophie. And that’s what I’ve been given. My eyesight is normal. My sentences are coherent. I remember how to spell.
How long will it last? I don’t know. I take none of it for granted and all of it for grace. But for now I have fallen and been raised up, crumbled and been restored.
My dearly departed teacher, Brad Brown, once said to me,
“I have been to the bottom and it’s firm.”
Now I know what he meant. They couldn’t count the tumours. They wanted to radiate my whole brain. I was in grave danger of losing myself, which was more frightening than losing my life.
But here I stand.
On solid ground.
Living with cancer.
Full of wonder.
And so I walk.