My husband’s worst day (so far) was the day he received a phone call from a clinic in Mexico where I had applied for treatment. It wasn’t the Oasis of Hope hospital, from whence I have just returned, but another clinic I had been told “never turns a patient down even if they’ve been given only weeks to live”.
I had seen a film called Cancer Conquest, which featured some of the most cutting edge oncologists and cancer physicians in the world – more than I had the energy to research and contact one by one. So I contacted the maker of the film, Burton Goldberg, to ask him a simple question,
“If I was your daughter, which of these doctors would you send me to first?”
His reply was unequivocal: “Dr Muñoz. He is the finest cancer doctor in the world.”
So there it was: the lighthouse that came into view as I was being tossed about by the relentless turbulence of those early weeks, showing my ship a safe place to go. As each new wave crashed, each horror unfolded, each disappointment dragged me under, John and I kept looking for it through the portholes of our despair and turning our sails towards it. Distant, but luminous with hope.
First I sent Dr Muñoz the scan reports of my lungs, lymph nodes and bones. Then waited for a response. A couple of weeks later I chased the response, but was told my case was still under review. So I waited a while longer. It didn’t come. Next I sent him my brain scan results, nervously I admit because my case had escalated from severe to grave, but he needed the full picture and ‘never turns a patient down’, right? “Trust,” I kept telling myself. “He must be extremely busy. Give him time.” And so we hung on a wafer thin whisper of possibility, waiting for it to mature into a seasoned certainty and roar in the darkness.
John took the call while I was putting Gabriella to bed. I could hear the sound of his voice downstairs, but the words weren’t audible so I concentrated on her bedtime story and helping my wiggly-squiggly-jumping-bean four year old fall asleep for the night. This usually involves lying next to her while she snuggles into my armpit and knees me in the ribs a dozen times before her perpetually moving legs finally give up the ghost.
One night she actually said to me, “Mummy, my legs won’t let me sleep” and once, after an hour long journey in the car she said, “Mummy, my legs are bored”. As if they have a life all their own. She outran her whole class at Sports Day, including the boys – not because she was racing, a fact to which she was oblivious, but for the sheer joy of running. I wonder where those legs will carry her in future and if I will be here to feel my chest swell with pride while I cheer her on from the sidelines. I wonder. I yearn. I pray.
John said walking up the stairs that evening was the highest climb of his life. He still wells up when recalling it. He knew how hard it would hit me and what I would make it mean. He had to tell me that Dr. Muñoz said no. That he couldn’t take me. That the metastases to my brain tipped the decision because his treatments don’t work on cancer in the brain. That the doctor who doesn’t turn people down had turned me down. That I was that far gone. He had to watch the last remnant of light fade from his wife’s eyes as she watched her lighthouse disappear from view while the storm perfected itself and tossed her further and deeper into the despairing night.
I didn’t feel anguish, anger or even grief. I felt numb. Empty. Dead already. I had been told that in Chinese Medicine the bones and brain represent ‘the deepest parts of you’. So it seemed my cancer had reached my out-of-reach places physically and psychologically, perhaps even spiritually too. I was a write-off. A goner. A wasted ticket. A lost cause. John was right about what it would mean to me: Game over. Nowhere left to turn.
How is one supposed to feel in the face of such a realisation? Disappointed? Sad? Scared? Those feelings belong to normality, wellness, being ordinary. They don’t count when you’re dying. They shrivel like old apples in the sun, expended and inadequate. Instead a dry, dusty inconsolable something draws out like a desert inside you, a shimmering colourless mosaic of mirages as far as the eye can see. No boundaries. No solace. No moisture. No horizon. Was this desolation? I had never visited it before.
John was as desolate as me. He loves me so very much. Yet hard as it was for him to be the bearer of that message, I am grateful it came from his mouth. His pain distracted me from mine. I could focus on it instead of disappearing into the desert. I could pull myself back from the brink by assuring him it was ok, I was ok, it was going to be ok… ok? I could kiss the top of Gabriella’s head, now asleep on my left arm, and pull him onto the bed with my other arm to curl up with us for a while and take what this moment had to offer: the great love we had found, the scale of which could only be matched by the sorrow we felt at the prospect of leaving each other after too short an embrace on earth. And the daughter we produced, against so many odds, who wears John’s smile as she explodes towards tomorrow and whose legs have a life of their own.
That was his worst day. I didn’t speak to him about Dr. Muñoz for many weeks after that because it made him choke to remember that steep climb up our stairs. So I went behind his back for the first time in our marriage by contacting Muñoz again while I was in Mexico. By now I had found another clinic to treat me, which was in the same town as his, and my scans were showing real improvements – including my brain. I knew it was risky because the tumours were still there, but I was in town and wanted to meet him. No. I wanted him to meet me. I wanted him to meet my spirit and witness my tenacity and shake hands with my sheer bloody faith. I wanted him to give me another chance.
I sent him the latest scan reports and his secretary responded within two days. Yes. Come. He is happy to meet you. What time would suit? I could have put the final full stop of this story right there. It switched something back on inside me that switched off the day he turned me down. Not hope. I had already retrieved hope. More like patience, divine patience with an unfolding narrative we can never foresee and a deep abiding reverence for Life As It Actually Is.
Dr Muñoz was as humble as Dr Contreras was charismatic. He was mortified about being called ‘the finest cancer doctor in the world’ and quick to tell me what excellent hands I was already in at the Oasis of Hope hospital. He didn’t want to muscle in on one of their patients so I assured him I wasn’t asking him to treat me instead of, but as well as. What could he add to my treatment portfolio? I had heard about vaccines he has developed, for example. Could he tell me about those?
Framed in this context he relaxed and put my scans on screen. First he looked at the tumours in my lungs, including a large one at the back that pressed into my pleura and caused the initial pain that sent me running to my local GP in October.
“Look. It’s gone black inside,” he said.
“Meaning?” I leaned in, eager to understand.
“I think it’s trying to commit suicide by becoming a cyst.”
I loved him! No one had told me that! And the idea that my primary tumour was trying to kill itself tickled my tumour-clad ribs a good deal. Of course I need to verify this with my oncologist at home…and not get too excited…and not get my hopes up…because remember, always remember I’m still going to die… But this was seriously thrilling news.
“And one of your other tumours is responding to behavioural therapy”.
“It’s trying to become a good cell.”
Now I was laughing out loud. Behavioural therapy is, to a large extent, what I do. So he is speaking my language and I am beginning to get why I have changed my diet so radically and taken so many damn supplements every day. I am helping my bad cells become good cells. How cool is that?
The meeting went on like this for about an hour. Dr. Muñoz is a specialist in immunotherapy. That is his passion and life’s work. He explained how the immune system doesn’t attack cancer cells because it doesn’t recognise them as the enemy – it would be like a parent killing its own child just because it grew too big too quickly. So he has been developing vaccines that mask the children from the parent so the immune system can attack them. The metaphor broke down for me at that point (being a Mum), but (being a Mum) my non-scientific brain got it. Some of his vaccines are in trial at this stage, but I wanted to be part of those trials. Would he treat me?
He looked at my brain scan for a long time, curious and somewhat amazed. He couldn’t believe the difference since my original MRI so he kept checking to be sure.
“Yes, Sophie,” he said. “I will treat you. I will take some of your blood today to determine which vaccines I can offer you. Thank you for the privilege of letting me put the cherry on your cake.”
When I heard those words something crossed over inside. So much of this experience is out of my hands. I can’t control it or determine the ultimate outcome. But in this moment I knew I was at cause, not effect. I wasn’t defeated or stooped over or bowed low. I had opened up instead of closing down and turned an impasse into a possibility, a ‘no’ into a ‘cherry on my cake’. For this is as much as I can do – to take my cancer by the hand and walk with it, not against it, into an unforeseeable land.
As promised, he took my blood that day, sent me the results (with findings no one else has uncovered) and a series of recommendations, including vaccines for cancer-feeding bacteria currently running free in my vascular system. Instead of packing my bags on my last afternoon in Mexico, I went to a lab to have more blood drawn so he could customise a vaccine for when I return in April.
I don’t know if it will work. I don’t know what, if anything, will work. I don’t know the future. I don’t know it now any more than when I believed I was a goner the night Dr. Muñoz turned me down. Good news, bad news, no matter. The lighthouse is straight ahead. Not because I got what I wanted, but because I’ve been reminded that a prediction is the same as a lie. I don’t know what doors will open when another one closes or which stones I will overturn when I’m accelerating down the dirt road of uncertainty. I don’t know when my game is over or my time is up.
Because Dr. Muñoz turned me down I looked elsewhere. As a result, in addition to my excellent UK medical team, I now have Dr. Contreras (Oasis of Hope post), Dr. Flavin (Dr. Flavin post) and Dr. Muñoz batting on my team – not to mention my nutritionist, naturopath, Chinese medical practitioner, acupuncturist, kinesiologist, hypnotherapist and personal coach!
Of course no one bats for me like John does, through the daily domestic details and nightly tendernesses that comprise our marriage. He’s the one who looks after Gabriella when I go to hospital for treatments, keeping things as steady and normal for her as we can without trying to hide how ill I am from her barely comprehending eyes. His is the shoulder she has cried on when she longed for Mummy when I was away and and his is the heart that will be bereft of my wonderment when I’m gone. But he walks the track with me, devoted and dignified, generous and selfless, the kindness in mankind.
I feel immensely blessed and privileged to be in this position, not least because of a team of friends and family who have been raising funds for my eclectic treatments. Yet even with all this in place, I don’t know what will extend my life or for how long.
But I do know that not knowing is the sacred frontier between the world as you see it and the world as it reveals itself to be. It is where you stand still, poised for epiphany, ready to break for freedom from whatever you believed was so but wasn’t. Not knowing takes you in when you have no place else to go.
I called John to tell him about my meeting with Dr. Muñoz . After the fact. He sucked air for a moment as if waiting for a hammer blow to land on top of the wound he was still tending from that phone call eight weeks ago. But my words were like Arnica on the bruise, providing solace from the stress of the past months and release from the despair that abducted his hope when he walked up the stairs that evening.
He was on the other side of the world and didn’t say much because he was getting Gabriella ready for bed, but I felt his heart soften like a fist unclenching as he broke for freedom once more.