I’ve got a war of independence raging inside my head. This is a problem of my making. We think. For some bizarre reason, and despite being a lifelong fan of ‘Our Bodies, Ourselves’, loving myself and saying goodbye to ciggies and alcohol, eating kale (OK, and a little bit too much of everything else) I’m fighting to be free from my own flesh and blood. Because I made TEF.
And it’s even more self-defeating than Brexit. I’m so over people talking about how complex and clever cancer is. What’s so smart about suicide? Because that seems to be its objective. Kill the host and, duh, we go too.
Whatever. I doubt we’ll ever get an answer to that.
If the first rule of successful military strategy is to know one’s enemy, then I’m challenged. I’ve had my DNA mapped for mutations – apparently the more the better, and I have a longish list – less good is we haven’t yet found ways to use this to combat TEF(s). Of course this will change, as researchers the world over dig deep into our gene pool.
General Morris (quite like the sound of that, have to say) has a simple strategy underpinned by a clear principle: we fight aggression aggressively, and we hit TEF with as much as we can from the get-go to buy time if and before recurrence, giving all those people in white coats time to nail a cure. We take each day as it comes, exercising, eating well, sleeping plenty, and using the healthy grey cells productively. All the while enjoying and appreciating my pretty damn amazing family and friends. And puppy.
Many white coats were on display this week for the President’s Cancer Moonshot initiative. Obama announced this during his last(ing) State of the Union address, delivered two weeks before my seizure in January this year. Solving cancer is right up their on the Big Prizes teasing the world’s finest in the 21st century. But what I like about this initiative is that it seems open and inclusive, bursting with ideas and not mired in how impossible it seems to make anything good happen these days. The team running Moonshot are approachable, and keen to plug in the views of all those affected by cancer, not just eggheads.
On Wednesday there were summits all around the country to update people on progress. I went along to the NYC summit. There were two panels of seriously impressive medics. But no patients. Being the shy one, I spoke of course, making my ‘patient-power-pitch’. Check it out: http://bit.ly/296IEKx Quite a long piece and yours truly doesn’t figure until towards the end.
Power. That’s the word I ruminate on every day as I run through my mental checklist: am I doing everything in my power to combat TEF? Am I on top of the latest research? Trials coming up? Questions for my neuro-oncologist? Mobilizing my peers to realize our collective power for mutual benefit? Am I thinking clearly, creatively and effectively? Am I using this to realize my potential as the Natural Born Campaigner I know I am?
Not enough. Must do more. I can’t rest but I’m not always sufficiently clear and confident to make the progress I want. I’m sitting on a draft deck mapping out my proposal. I want to create an app where people like me log what we do so we can measure our progress in relation to personal activity (exercise, diet, brain activity, supplements – all the things I know via the internet we’re doing, none of which is logged or analyzed by our neuro-oncologists). I want to understand what effect, if any, this has on the enemy. And in the meantime, provide data – the Holy Grail of medical funding and the clinical trial model – so we get more $$$$.
Make me do it. I must do it because I know it’s needed, I know it’s more than likely to help. And General Morris would.
A big challenge in military – or any – campaigns, is complacency. Just when you think you’ve got the referendum nailed the pesky people go vote to shoot ourselves in the foot. Right when you think your maverick blond fop and flip-flop approach to policy will secure you the highest office in the land, your BFF betrays you.
I had a very good MRI last week. No visible sign of TEF. The cavity left from the surgeon’s expert tumor removal has closed yet further. Dr Iwamoto said this was a really good MRI.
But also, wtf.
I’m almost six months in and so far, so good. Now is the time to use the value of good news to push further forward. Kick TEF while it’s down. Check ammunition supplies, new weapons, new strategies.
My poetry partner sent me a poem by Derek Mahon that I keep coming back to. It sums up where I want to be so beautifully. The only difference is I can’t just lie here. I want to be able to say the title and to do that I have to up my game in realizing it. Perhaps it’s apt that I’m contemplating how to do this on July 4th weekend. I have so much support from you, but securing independence from TEF is down to me. Wish me luck. x
Everything Is Going To Be Alright by Derek Mahon
How should I not be glad to contemplate
the clouds clearing beyond the dormer window
and a high tide reflected on the ceiling?
There will be dying, there will be dying,
but there is no need to go into that.
The lines flow from the hand unbidden
and the hidden source is the watchful heart.
The sun rises in spite of everything
and the far cities are beautiful and bright.
I lie here in a riot of sunlight
watching the day break and the clouds flying.
Everything is going to be all right.