The power of data

One of my character traits – at least according to my wife, who really ought to know best about these things – is that I have a tendency to project backwards whatever my state of mind and health may currently be.

If I’m feeling sick or particularly tired or am having trouble getting my words out, I’ll swear it’s been this way since I was diagnosed. Contrarily, if I’m having a good day – or even a good few hours – I’ll report that I’ve never really felt too bad with this tumour, and it’s not really affecting my life too much.

It makes me a pretty unreliable patient: one who’ll report his current state of body and mind as my general experience of life with a brain tumour, when actually it’s more likely to be how I’ve been feeling for the 60 minutes or so I’ve been in the room next door, waiting for the doctor to call me in.

This blog itself is testament to how changeable my physical and mental health has been over the last year. Regular readers will have seen me up and down, claiming life is pretty normal one day, then terminally miserable about my drugs and seizures another.

But I’m aware that even this blog doesn’t paint the most reliable picture of ‘how things are going’. What I write here is, of course, influenced by my assumptions about what you would like to read, whether I might be getting too boring or depressing, or indeed how commenters respond to particular blogs. A Schroedinger’s blog, if you like.

So, as well as this blog, I – or rather my wife – has also been keeping cold hard data about my life with a brain tumour.

She’s much more patient than I am and has, since day one, been keeping a diary of my seizures, my mood and my general well being. When my seizures started to come more regularly, she switched to a more formal way of recording such things. A glorious, detailed and meticulously kept spreadsheet.

For pretty much any given day over the last five months, I could tell you how I was feeling on that day physically and mentally (rated 1 to 10), whether I did any exercise, whether I had any seizures (daytime or nighttime), how much sleep I had (daytime or nighttime), and of course what dose of the various anti-epilepsy drugs I was taking.

With the advice of a great friend for whom an evening messing around with spreadsheets is classed as the most fun one can have wearing clothes, we’ve converted these data into a not unattractive graph.

The idea is that we can trace my seizure activity against the different drugs and doses, so when I see my neurologist in two week’s time, we’ll go with an actual picture of whether the drugs are working or not, rather than me just moaning on about how miserable I am taking them.

Now, I’d like to say I did it for experimental purposes, but actually I did it because I’m an idiot.

A few week’s ago, for about nine days, I accidentally took only half the prescribed dose of my main drug, Levitericetam. Those pills do all look very similar, and because I decanter them into a week-to-view pill box, it’s possible to get the dose wrong for consecutive days. Essentially, if you put the wrong sized tablets into Monday’s boxes, it’s pretty easy to copy-across the wrong tablets for the rest of the week.

(Or easy if you’re me, but I do have a brain tumour you know).

Anyway, what I ended up with was some data – to my untrained eye – that seems to show the dose of Leviteracetam I’m taking, doesn’t seem to make much of a difference to my seizures.

In fact, while I was accidentally on the lower dose, I was having fewer seizures than I was having on the higher dose. And when I went back up to my prescribed dose just a few days ago, my seizures suddenly came back with a vengeance.

This is, of course, my own cod data analysis. I did theology at university for, er.., Christ’s sake. But if you fancy yourself as a number-cruncher, take a look at the most recent portion of my super-graph and see what you think.

Now, there are of course some health warnings to apply: we’re only talking a short (and accidental) experimental time on the wrong dose; there are reports (on the internet, where else?) that rapidly increasing the dose can cause more seizures and that’s exactly what I did to get back on the correct dose; and this all this could be just be one big co-incidence, anyway.

But my reading of the graph going back to day one certainly concurs with my gut feeling about this drug: it doesn’t work for me. Given the side effects of sometimes extreme tiredness and irritability, is it worth being on the drug at all?

All of which I’m going to have to try to explain to my neurologist in two week’s time, in the ten or so minutes that I have allotted with him before I see him again – in another six month’s time.

This is where the graph will be useful. If he – being of excellent education, extensive experience, and (I imagine) extraordinary pay packet – is able to use my graph to show me something different, or to dismiss my data entirely, at least we’ll have something to discuss rather than my rather changeable response to the question: so, how have you been then?

If he does agree that the drug might not be working as well as we’d hoped, he’ll put me on another one. Most probably, he’ll add another drug to the Leviteracetam rather than taking me off it completely.

But before I allow him to do that, and since I’ve got the graph going anyway, I fancy proposing another interesting experiment.

What happens, I’m thinking, if I drop the drugs altogether?

What if before I start any new magic pills, we clear all traces of anti-epilepsy drugs from my system and take a look at the seizure activity?

Given I was having one seizure a month or so before I took my first pill, and these days count two a day as normal, could it be that the data will show I’m better off not taking anything? I may have to put up with the occasional seizure, but I’ll spare my wife, kids and friends the irritability and fatigue the drugs have brought with them? It’s all a matter of balance.

Or perhaps I’m being reckless and ignorant, and should just keep obediently popping the pills.

Oh, and one more thing.

All of this depends on another line I’d like to be on the graph, but just don’t have the data to map. That is the line showing the growth rate, if any, of the tumour itself.

On Friday of this week I’ll go for my latest MRI scan. It’ll be the first picture of the tumour for seven months. If the MRI shows significant growth since the last one in July – or to put it another way, if it creates a big juicy red line on my graph going up, up, up – then all bets are off.

Our carefully constructed data on the drugs and seizures will be thrown into disarray, because it could be tumour growth that is causing the change in seizures, and the drugs are just bit players.

And if the scan does show significant growth, then something tells me that ten minute or so consultation with my neurologist might suddenly be filled with rather more urgent discussions than what colour and size of particular pills I should or shouldn’t be taking.

Still, it’s a pretty good looking graph, isn’t it?


6 Comments

  1. Shame you only have 10 min with your consultant, otherwise you could do a Peter-Snow-style multimedia presentation with your fancy graphs, of course in a sweating cycling shirt with spare tube hanging out the back while swigging your bidon….

  2. Would be interesting to see what other things were happening in your life too on the graph, stress levels etc. I had my six month mri on saturday and am seeing my oncologist on thursday. Doubtful my tumour will have grown any but you never know.

  3. There is a dramatic change at the beginning of this year – are there other factors other than the size of the tumour and the drugs that you take which may have an impact?

    Do you know the lead in time for the medication and how long it stays in your system. If it (a) has to build up and/or (b) stays in the system for some time this data may be a bit more difficult to draw any conclusions from re the link between the medication and your seizures.

  4. Thanks for your contributions and questions folks.

    Yes, there was a dramatic change on New Year’s Eve that’s lasted a month or so – though on Clobozam, things do seem to have calmed down.

    We can’t pin that change down to anything particular, but my neuro says it’s not unusual to have ‘clusters’ of seizures… I guess we’ll see when I meet him in a couple of week’s time.

    In the meantime, stay well out there – and thanks for continuing to engage with me and the blog.

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