Living with Uncertainty
I am experiencing an enormous, unexpected and incomprehensible life change.
A few months ago I felt a bit odd when hiking in upstate New York with some friends. I couldn’t explain why – literally, I couldn’t make words form – and promptly blacked out. Three days later I had a five-hour operation to remove a grape-size tumor from my brain.
I have aggressive brain cancer and it’s forcing me to appraise every aspect of my life, from how I parent to how I dream; from what I value to how I can begin to achieve my potential and realise a legacy of worth.
And I’m doing so in complete uncertainty. Just when gravity and concrete are most needed, I’m floating in a sea of uncertainty, where grey is the best you’re going to get, and ambiguity is the order of the day.
This isn’t how the medical profession has presented our options. You’re either healthy or sick. Alive or dead. With cancer or without. The evidence-based trial system will provide irrefutable answers. Objectivity, evidence, data, and outcomes outcomes outcomes rule.
I feel fine. I’ve had radiotherapy, am taking chemotherapy, immunotherapy and electrotherapy. And, like many other people with conditions for which the search is on for a cure, I’m adding in a bunch of supplements, exercise and diet controls.
So I feel fine, but am I fine?
Of course I want to know that the treatment I’m having is working. Turns out we have no way of knowing without looking at MRIs. And even then the MRI might show a flare that could be anything from the after effects of radiation to my immune system flaring at the immunotherapy, before embracing it to fight the cancer.
So I’m living with uncertainty. I know we are all in this club, but the scale and stakes of THE GAP between certainty and ambiguity for me ARE much bigger than yours. And I’m finding navigating this terrain tough.
Frustrated by the familiar tale of the more I find out, the more I appreciate I don’t know. I’m on an uncomfortable see-saw. Some of the time I feel confident and full of clever insights into how if only the medical profession could become truly patient-centered all would be fine, or if only it would apply universal design principles and crack the hardest cancer first (rather than ones that impact on the largest number of people) and so on… Then the see saw swings abruptly and I’m met by insurmountables, like the bloody blood-brain barrier, unique in the human body, and both its most valiant protector as well as its built-in suicide bomber. Or how my own fixation on all things brain cancer might not be shared in equal measure by y’all.
Sometimes I feel that it’s contradictions, not ambiguity, that are driving me most nuts. Rest so I can get over the radiotherapy; exercise so I keep my immune system fit for chemo. Stay away from the online community to stay sane; get support from fellow travelers offering the solidarity of those in a horribly elitist club. Add to the cocktail with supplements and therapies – they can’t do any harm; keep focused on the main treatments and don’t spend precious $$ on things that are unproven and have little effect.
Here’s what I do know, with absolute certainty. For me, this ricochet of a ride into a harsh new reality has forced me to be clearer in my thinking. If the external world fails in giving me the comfort of certainty, then I will make my internal world strong enough to turn this to my advantage.
The Mayor of Chicago, Rahm Emmanual, once memorably described the Obama administration’s efforts to rebuild the economy post 2008 as “never let a good crisis go to waste”.
I’m planning a patient-centered approach to brain cancer. Creating new data out of real lives to see the synergies between treatments and behaviours, providing new data – BIG DATA! – for those with Dr and MD to trawl over. Accelerate the learning by understanding the reality better. And provide funders with evidence of a new approach, and new data – thereby assuaging their hesitancy to fund new treatments. And find out what the hell is going to make us better.
As I type I feel my energy rising. I can see this coming together. I’m checking latest patient-oriented sites, from peoplelikeus to umotif to right here, right now. I’m talking to patients, doctors, journalists, plus the Moonshoot intiative…
It’s a gargantuan task but my diagnosis comes with a licence to be outrageously ambitious in thinking. And utterly dogged in seeing this through.
So uncertainty has moved from being my literal nightmare to my new BFF.
Bring it on.
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