I’m a million dollar woman. My surgery cost something like $130K. A year of immunotherapy infusions is $144K. Electrotherapy is $250K a year. Half way to a million and we haven’t even added in radiotherapy, chemotherapy, bi-monthly MRIs, and a bunch of supplements. Who said I was a cheap date?
I’m a Million Dollar Woman.
And a greedy one. I reckon I’m worth so much more. Back in the day, if I didn’t feel Ed was paying me enough attention, my oft articulated and somewhat wishful line was: ‘Don’t you realize that thousands would pay thousands to spend just one day with me?’. Wistful and downright dodgy. And useless. All it did was elicit a wry smile. He’s still here though, and we’re happy even without the thousands and thousands. Ha!
But feeling like a Million Dollars, staying well and fighting The Evil Fucker takes a currency far more complex than a big bunch of bucks. Oh my poor head. It’s not enough to be carved up by a surgeon, burnt by radiation, drugged by chemo and frizzed by electronic tumor treatment fields. It’s got to dodge all those bullets and deliver a positive mindset. Because what’s the point otherwise?
Here’s my recipe:
Set the oven to high
Mix together personal experience with knowledge garnered from the finest neuro-oncologists, technologists, brain cancer patients and care givers you can find
Sprinkle in more than a pinch of common sense
Flavor with large dollops of hope, belief and determination
Bake until a syringe comes out as clean as the MRI you want to see every time you enter that tunnel
Eat, enjoy, energize. And then ACT.
I’m feeding my appetite to prove my worth and triumph over TEF by developing OurBrainBank. A quick reminder: After decades of very little progress, cutting edge treatments for brain cancer are on the horizon. But none have yet harnessed the power of the very people most desperate to make a difference: patients. OurBrainBank does this by putting the patient at the center. We’re starting where patients are: online. We’re using what patients use: a beautifully simple app. We’re asking them to input what they’re doing to stay well – from diet to exercise to supplements – and how they’re feeling, including symptoms and side effects – language issues, balance problems, tiredness, nausea and so on. All that information will find its way onto the desktops of analysts at Columbia and Dana-Farber, two of the world’s leading neuro-oncology research centers. These clever clogs will pore over the data to spot what’s working best, what combinations of treatments are most effective, what insights we can gather from the reality of patients’ lives so we can improve guidance, connect patients to each other, build a community, enable patients to make better use of their meetings with their doctors, and provide a ready-made pool of candidates for recruitments to trials. And perhaps most importantly, provide insights and evidence into this patient population to unlock the serious big bucks we need to kick TEFs outtahere for everyone, forever.
If OurBrainBank is my big therapy, you’d think I was feeling swell. I mean I’m helping create something seriously special that could make a significant contribution to tackling one of the most complex and frustrating cancers around. It’s exciting and ambitious and all the things that get me going. And I think I’m doing fine physically. I haven’t had an MRI since I last wrote. Nor have I had any noticeable changes in how I feel physically. But I don’t feel psychologically that great. I think it’s because the longer I’m well, the nearer I get to a potential downturn. I’ve never been given a prognosis, and I understand that median statistics are just that, and in no way an indication of what may happen to me. Perhaps I fear not fearing TEF. Am I sufficiently prepared for the worst? Or is that a self destructive and pointless exercise? If things change, I will have more than five minutes to adjust. As a wise friend told me, instead of feeling that the longer I feel better, the nearer the moment I might not, I should feel that the longer I feel better; the longer I feel better. True dat. A few months after my diagnosis we went to see The Witch, a truly dreadful film. As the movie started my friend Jenn whispered that she was scared. Quick as a flash I responded: “I’m not afraid of my brain cancer, so how can you be scared of a crap movie?”. A flippant remark, but one I delivered without thinking because that’s how I then thought. I was clear headed and confident. Every night, those first few months, when I woke to go to the loo, I’d look at the chinks of light from my bedroom shutters and feel my belief and self knowledge that I was going to be OK.
I still feel that. But now I sometimes fear feeling it. A massively horrible, unfair thing happened to me and I rose to hit back. It’s like when I woke up in my freshman dorm room in college (or ‘first year university accommodation’ for my British readers) to find a guy stealing my camera. I was so shocked I jumped out of bed, wrapped a blanket round me (err yes, I was starkers) and chased that bastard down the corridor. I lost him, but he was eventually caught and I was able to buy a much better camera. I was shaken, but I wasn’t stirred.
The point is my reflexes are to fight back. That’s what I’m doing now, but it’s getting surprisingly harder and more complex a warpath the further along I go.
TEF is stirring me a little of late. I can see it in the way I’m not pushing myself to exercise as much as I was. In the way I’m indulging in sugary treats or the odd carb every now and then. The sin of over-eating has been the bane of my life. It took me far too long to figure out what was always staring me, literally, in the face. When I start to feel a bit wobbly, I eat. The difference now is that I understand the power of the confessional, and you, lucky reader, are my Pope. By opening up and hinting at my sins I can feel ablution washing through me.
Here’s another recipe. This one is for getting Back On Track:
Apply make up.
Tie head scarf.
Add appropriate ear-rings.
Revise TO DO list and Get On With It.
MAKE OURBRAINBANK HAPPEN
I know I can. After writing this, I know I will.
I’m a Million Dollar Woman, after all.
Thank you, dear friends