Message from Jessica: It’s all about me

I bet if I took a straw poll, more than 80% of you would have had some sort of psychotherapy at some point. There’s typically a moment when you have to spill the beans, so to speak, of what’s really going on inside your psyche. To dig deeper, set aside what you think you know of you. And in doing so, the therapeutic value of lancing the boil is immediately proven. As you grimace at the check, you also acknowledge that you are different in some perhaps indecipherable way, to some uncertain degree, with indeterminate consequences.
Cancer got inside my head in a way no shrink of whatever hue could. 2016 was a year of shock, regularly fueled by intensive treatments. I completed six weeks of full-on brain radiotherapy. Nearly a year of chemotherapy. Same of immunotherapy and electrotherapy. I switched my diet to exclude all sugars – cancer’s food – bought the best pup ever and got to know every nook and cranny of Prospect Park. I guzzled a handful of supplements with breakfast and dinner daily. I stuck needles (good ones) in all sorts of places. I slept. And slept. We hosted a dizzying array of friends and family, dined off extraordinary feasts delivered by Brooklyn’s best. The flowers, the gifts (I still snuggle under a cashmere delight of such wonders no words can convey), the cards and the visits kept me up and away from the Danger of Depression.
2016 was dictated by TEF. Everything I did stemmed from it. It took center-stage in my life in a horribly dramatic way.
2017 sees me – the full me, not just the sick bit in the upstairs department – tentatively getting back into the driving seat. I’m looking at me and I am much more than a bunch of sick cells.
First, though, I needed to pack 2016 away. To do so, I wanted to look at the physical location where TEF first made its presence known. I wanted to pay homage to that moment, and to the instinctive and unfettered love and support shown by my friends who were there on a hillside in upstate New York where I collapsed a year ago. They kept me upright as I shook and frothed and rolled my eyes and god knows what else. They gently led me down the mountain top, guided me into a vehicle, using calm and loving tones, keeping my rising alarm at bay.
We returned to Beaverkill with the same friends a couple of weekends ago. With no set plan in place for Saturday morning, we found ourselves intuitively coming together for a hike to The Place. There we smiled, hugged, chatted, remembered. And replaced a traumatic, unspeakably horrible memory with one of collective friendship. With every step away from the site, I could feel my psyche healing, as if it had been looking for a critical stray piece of the puzzle of repair.
Now to 2017. One year and one week to the day later, I accompanied my brilliant neuro-oncologist Dr Fabio Iwamoto and Bruce Hellman, CEO of extraordinary UK start-up umotif, to present thoughts to a global team at the forefront of healthcare and technology, on how we can massively accelerate progress to a cure for my kind of brain cancer.
Here’s the thinking. What I have is very rare, and very aggressive. What’s the solution? Seriously large research money for new treatments. The challenge? Funders like to fund treatments which are likely to succeed. The safer the bet, the better. So we’re in a Catch 22: without evidence we can’t get funding, and without funding we can’t get the evidence.
I’d asked Dr Iwamoto what was needed to crack brain cancer, and I was pondering this funding gap. We had to find a way to get evidence.
Meanwhile, I was madly googling online for advice and ideas and support from fellow travelers. What I found was a traffic jam of facebook groups, blogs and message boards packed with patients and caregivers. The range of different advice offered by different doctors, and the huge spectrum of other treatments, from complimentary therapies to different diets, and so on and so on…..In other words, a vastly differing array of experiences documented solely online. The only common factor was the chasm between patients and doctors. Where doctors are understandably loathe to recommend anything that hasn’t been proven, patients like me are operating with a very different criteria, ie as long as it doesn’t harm me, the absence of a cure means ‘I’m up for it’. And whereas online patients are posting notes often more than once a day, their doctors only get to see them sporadically.
Wasn’t there a way of combining the two? Of documenting what patients are doing to treat their TEFs in a 360 degree way, from their perspective, at least once a day? Thereby providing a fuller picture and – critically – a mountain of as yet untapped data that can then be analyzed to understand what combination of treatment works best, building a more robust base of evidence and insight into the patient community that one hopes will give greater confidence to potential funders.
One other point. If you look at cancer as a whole, research funds tend to go to those cancers that afflict most people, and/or are easiest to treat. Seems to me this is a poor way to tackle the overall condition. I used to work with disabled people, and we’d seduce businesses into seeing disability as a business issue by arguing that if, for example, you design your buildings to fit the widest wheelchair, it’s the most efficient way to make sure the doorway works for everyone. Move to cancer – doesn’t it make sense to tackle the most complex, most aggressive and rarest one first? Wouldn’t that be the quickest and most efficient way to secure better treatments and outcomes for all those with cancer?
Bruce and Fabio are designing an app for people with my kind of brain cancer called ‘OurBrainBank’. It’s designed around the patient, not the app’s capabilities to collect data. We think we can make TEFs treatable much more quickly this way. And the whole enterprise is being powered by patients.
Oh yeah. More on this in future posts.
That was last week. This week was MRI time. The usual scanxiety kicked in a few days ahead of my 8am Tuesday appointment in the bowels of Columbia-New York Presbyterian. I am very lucky not to have to wait for the results. Soon as I’m back up to the 9th floor where neuro-oncology lives, Dr Iwamoto comes to see us and smiles. Ah, the relief. I cannot begin. He shows us the images. Pretty much unchanged from the last scan two months ago: the cavity vacated by TEF is tiny, and the lightened area hasn’t really shifted, confirming Iwamoto’s view that this is scarring left over from the radiotherapy. If it was suggestive of TEF it would have grown since the last scan.
I’m to continue with two more chemo cycles, taking me up to a full year. I’m a little anxious about stopping, as, presumably, it is impacting positively. But there’s no evidence it can impact after even 6 months, let alone a year, so there’s no strong case to continue. Equally, the toxicity of chemo means it can create problems in the future. (When the doctor started talking about long term problems I felt happy! I might have a long term!!). And the cumulative effect of the chemo is making my tiredness seriously boring.
I’m also to continue with the immunotherapy, a checkpoint inhibitor called opdivo/nivolumab, for a further year.
Meanwhile, labs the world over are feasting on cutting edge treatments to land the next big step in cracking brain cancer. It’s been years, at least a decade, since we had any major advancements. Cross everything we get a breakthrough soon.
So all of this is what I’m fixating on now. Not last year.
As I watch the most powerful person in the world conducting himself in the most bizarre fashion, feeding on the oxygen of publicity that must, surely, lead to political suicide at an as yet unknown moment, I turn the outside world off. I’ve kicked TEF out, both literally and psychologically. I hope for ever, but certainly for now.  I’m good – very good – for now. And that’s all any of us can know.
The Beaverkill walk helped seal the end of last year. A great day, topped off with a glass of champagne before dinner. As I took my first gulp, my friends morphed in front of my eyes into a flashmob, jettisoning me back to those ’80s student days and my love of dancin’. Go WHAM!! Chloe – I will always love you for this. I dare you to resist George and Andrew as I sign out for now and get back to focusing on me! RIP George. You and Andrew may not have been the most sophisticated lyricists, but you got me.
Wake me up before you go-go
Don’t leave me hanging on like a yo-yo
Wake me up before you go-go
I don’t want to miss it when you hit that high
Wake me up before you go-go
‘Cause I’m not planning on going solo
Wake me up before you go-go (ah)
Take me dancing tonight
I wanna hit that high (yeah, yeah, yeah, baby)
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