Taking Care of Business

A 17 year old good looking guy walks into a recording studio. He explains he’s a singer. “What kind of singer?” he’s asked. “I don’t sound like nobody.”
What gave teenage Elvis the confidence to think he could make it as a singer, let alone one who was so unique and distinctive he defied categorization? Whatever it was, it helped propel him to become The King.  If I could find that chutzpah and bottle it then… well, then The Evil Fucker (TEF) would really be on the run.
I heard this tale when we visited Graceland last week. We were in Nashville and Memphis for Spring Break. We checked most of the boxes: Graceland, Stax and Sun Studios, the Lorraine Motel and National Civil Rights Museum.
I was struck by how so many musicians actively seek out different genres, wanting to understand and be inspired by differences, breathing new life into their art, constantly redefining their work.
And having a blast while doing so.
That’s what I’m trying to do with TEF. Grabbing as many treatments as I can, both medical and complementary, hoping that there may some truth in the simple adage of the more the better. Hoping also that one of oncology’s current buzzwords – synergistic treatments – comes good for me.
But there’s another ingredient behind successful musicianship that Tennessee reminded me of. I want to feel good… James Brown is not alone. What makes me feel good is doing something with the shit hand I’ve been dealt in order to stare it down, for me and anyone else dealt this card. That’s why I’m determined to get OurBrainBank off the ground.
We’ve had a couple of meetings with potential partners, and I’ve spoken to some people with seriously deep pockets and/or minds (we know you can never assume the two go hand in hand, right?).
Everyone loves the concept. We’re turning GBM (the acronym for my kind of brain cancer) from being considered terminal (ie no cure yet) to treatable, powered by patients.
Everyone loves the team.  My fabulous neuro-oncologist, Dr Fabio Iwamoto at Columbia University, Dr Lakshmi Nayak at the Dana-Farber Cancer Center in Boston, and Bruce Hellman, CEO of coolest start-up ever – umotif – and maker of the app. Oh, and moi.
But – and it’s an important but overcomable but – we haven’t yet demonstrated how the information we want to collect from patients via the app will enable us to make a giant leap in cracking brain cancer.  Whatever we ask patients to input has to make sense to them, so it’s worth their while to use the app, and not become yet another good but insufficiently compelling-idea.  So we’ve hit the pause button until we’ve cracked it we can get on with launching it.
I cannot wait.
The fug I’ve been feeling, which Elvis et al briefly lifted, persists.
This despite a great MRI a couple of weeks ago. The genetic makeup of my tumor means the chemotherapy I take is more likely to impact than otherwise might be the case. So I’m still taking it, a year since I started. The MRI showed further shrinkage of the cavity where the tumor was, which means the chemo is still doing its job. Given I’m OK with it (she says, stifling chemo-induced yawns) I’ll keep popping the pills for a while yet.
So MRI day was a very good day.
Why then the fug? I wrote last time about the longer I’m OK the more worried I am that I may be closer to the day I’m not OK. A sort of mid-life crisis massively concertinaed perhaps. I can react by getting all gloomy, or by hitting back. OurBrainBank helps me do that, so I’m finding the pause button hard to deal with. Once that’s lifted I will be so up for it. I feel a bit like those thoroughbreds champing at the bit, waiting for the gates to open.
Moi, thoroughbred? You ay scoff, but you know what I mean.
I want to get on with OurBrainBank because it’s good for me, it’s good for other patients, it’s good for anyone with cancer and that means it’ll be good for all of us. When I say it’s good for me, I don’t mean only because it has the potential to make a major contribution to sorting out brain cancer. I mean it will help satiate my need to feel I can still be ambitious. It is legitimate for me to strive to achieve, to make a mark, shift a needle or two, make some quantum leaps somewhere. I can’t bear the thought of TEF closing any doors to me. I can feel anger at that prospect coursing through my veins even as I type.
I’m a 53 year old woman with brain cancer and I want to feel like a 17 year old who can knock the socks off the competition with a totally new approach.
So at the moment I’m doing what Elvis famously talked about – TCB (Taking Care of Business) – in a flash. We’re not quite yet moving at lightening speed, but once we’re up and running you betcha I will.

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