My previous entry (3 February) was busy on emotion, short on medical details; a poetic reflection of how I was feeling but also a hodgepodge of insomnia-driven cognitive dissonance. I have since undertaken some fresh tests (a brain scan and glandular stuff), spoken to my doctors, and received my standard biannual immunotherapy ('DCVax') injection. 

So let me share a few details.

A hot mess
What happened to me on the 1st of February? Weeks of subtle changes within my brain--a little inflammation here, a new hot spot there--finally fully expressed themselves. Recap: I had been experiencing mildly surreptitious and slightly random changes for weeks (eg left eye tearing up;  limited appetite; lower energy levels; Kombucha cravings?!)... and yet nothing so glaring that I ever became alarmed. I had become a little complacent following what had effectively become a 2+ year run of remission. 

A HAPPY hot mess
It’s been a tough month, managing these new side-effects without knowing how long they will last. But I've found a lot of comfort in the mundane details. 

Firstly, I know the enemy well. Emotionally, GBM sucks because it hurts both your brain and its ability to perceive pain. Even likening the disease to a suicide bomber is giving it too much credit. It doesn’t really operate with malice or evil—simply with the intention to grow. It’s more of a time bomb whose growth trajectory is in large part random. This translates into ‘good' news because my latest brain scans indicate its recent spread has been caused more by a few smallish, minor rebels; less by a single grotesque hell-bent beast. The former should be easier to take down.

Secondly, I'm ready to fight. The initial response will be straightforward. An indiscriminate 'kill every fucker out there' chemo offensive (the time-honoured 5 days on, 23 off regimen). Because of the GBM's diffuse nature, the doctors agree this is the quickest way to dislodge it from the bits of my brain currently affected. It is also helpful my body is currently almost entirely free of TMZ; this should boost its hit rate. We will throw in a twist this time: an endocrinologist providing covering fire to help free up parts of my brain with other speciality meds.

Yeah, 'I love the smell of napalm in the morning'.

Many years ago, grandmother Mireya and I played a seemingly childish (but in reality deeply profound) game. The key objective was simple: make light of the massively debilitating stroke she had suffered decades earlier. The key question: could we get the most elegant, classiest of ladies to belt out (with a little verbal support from her grandson) the finale of that most salacious of Spanish words ‘hijue ...'

... PUTA!!!!
(cue infantile laughter)

To this day, as she approaches her 80th birthday, Mireya often explains the stark contrast between the clarity of the words in her 'head' with her inability to express them. I always thought I understood this explanation; but only a couple of days ago did I really 'get' what she meant.

***

Rewind half-a-dozen weeks. I had started experiencing constant headaches. They didn't worry me much. I didn't give the 'obvious' explanation (brain tumour alert!) much credence: the pain was negligible, my past two years of scan results all invariably cheery.
This changed on January 14: my oncologist informed me of a new, very small, non-contiguous lesion on my right hemisphere.The Terminator was ruminating again. Too small to stress about, too large to ignore for long. Duration to next scan would be severely shortened. 
My health deteriorated over the following weeks. I felt run down and paused training. I experienced some odd back and neck strains. Something was up with my toothbrush—I began dribbling from my left side. My appetite disappeared. Headaches got increasingly intense. My left eye had started tearing up randomly, and I could no longer wink with it (but had I ever had that ability?). I spoke separately with my top two doctors. General agreement: remain alert, no sudden changes called for.

On the afternoon of Sunday 31 January I finally looked into the mirror. The left side of my face was mostly paralysed. 

'Hijue...'    

***

Sonder hit me the following day.
Lunch conversation with Ingrid about my health suddenly struck in me an irrational, extraordinarily intense infantile-like terror when we broached the theme of 'strokes'. I became light-headed and felt that unless I brought my body's energy use to near-zero I'd pass out. I made an awkward lunge for the floor, Ingrid for her phone ('we need an ambulance on the double!’). I smashed into the ground with my right brow--blood everywhere. I turned myself over and we waited for the ambulance as Ingrid frantically wiped my forehead.
As the medics ran through their routine tests I felt pretty calm. I knew I had to raise my game to calm the situation. Ingrid was probably in a bit of shock; Ernie couldn’t work out why I was telling him to return to his iPad. And then came the the medics’ questions. Name, birthdate, date today—easy. Then another; ‘yeah, I got this one, clear as day’. But couldn’t physically get it out of me. I shook my head, shrugged my shoulders, offered an apologetic expression. 
But rather than contemplate all the terrrible medical frights and terrors that awaited me, I must have produced a wry smile as I thought of Mireya. ‘Ayy abuelita, ayy Mireyita: hijuePUTA! Hijue... puta’.

***
​
Having left the house in slippers & pj's--phone and charger within pockets—the next hour was particularly trippy. I gave the medics advice about the fastest route out of Richmond (‘quirky’ navigation system in the new vehicles? Did I hear that right? ). The sirens came on. I barely had time to outline my recent medical history during the quarter-hour race into hospital. Straight to A&E. Tongue twisters; co-ordination tests; visual challenges; undertake ECG whilst repeating medical history to doctor. Straight into CT scanner. 
Great. No sign of stroke. Send him to transition area, he’ll be fine.
And indeed I was. The next 24 hours (vitals ‘monitoring’) were mostly restful. Even the alcoholic dude trying to escape the recovery ward (from the moment I arrived late Monday night to lunchtime the following day--escorted out by a team of police officers) served up several amusing moments. And my grizzled neighbour’s old-school radio served up some sweet blues and classic rock tunes. 

***

Tuesday, 1448. Almost outta here. WhatsApp from JD. Sweet, a video message from Mireya. Closing salutation?

‘Puta’.
​
Well, really, what else was it going to be?

... ‘as Ernie approaches two-and-a-half he has developed a passion for buses, for the colour red, and for jigsaw puzzles. Imagine his reaction last week when he received an Amazon delivery of a Big Red Bus Puzzle. The first time we completed it together. Afterwards he pushed me aside (‘just leave it’) and spent a few minutes sitting quietly, studying all the characters aboard bus #44. 

Then he tore it up, jumbled up the pieces, and asked: ‘where JD? Where JD and Bethany’? I understood the questions but not his reason for asking. It took me a few attempts. He needed a recognisable piece to start solving. There was one that stood out because it has a picture of a character that looks (a little) like uncle JD. And the character in the piece next to him? Wife Bethany, of course.

No cheesy metaphors
Before you roll your eyes—‘another one of Pablo’s cheesy metaphors!’—I’m not going there. I actually just wanted to highlight how beautiful this summer has been. Bethany and JD tying the knot. Ernie building buses. Azim and Natalie finding love (with new partners, not with each other!) and committing to it for a life-time. Meeting newborn Godson Jakob, the personification of cool. Spending a few days on the road with Dean and Juan on the Baptism Tour, a small cycling odyssey that took us through Kent, France, Belgium, Luxembourg, Germany and Alsace. 

And spending a few days chilling in Tuscany with Cesco, Azim, and Ashik (there in spirit after the Belgian authorities denied him a visa). Almost seventeen years after meeting eachother opening a bank account during the first week of uni, each with our own respective families!

Punching bag
Round 4, fight 3, God knows how many punches. 

The last few have been more difficult than usual ... In an unexpected way. On the whole, I feel great. I have to put it in cycling terms' ...

I'll stop there and spare you the surfeit of bike platitudes. I wrote these words almost two years ago—the Baptism Tour arrived in France a day before Jakob’s christening and two days before the World Cup Final. Brain-wise it proved a difficult, uncertain summer. All the same, we found ways to have a blast. 

This summer has had many parallels. A couple of babies are on their way; but I’ll let the prospective parents share their news. As lockdown restrictions ease we have some adventures planned (Côte d’Azur and Cozumel! Colombia and Cornwall?). My ‘Ferrari’—as Ingrid sardonically calls my bicycle—rolls on. Ernie remains an avid fan of jigsaw puzzles and graduates (from nursery) in two weeks. 

One small twist, though: the tumour shrunk again.​

Happy summer, see you for the next scan in early 2021.

'Hello again. 
​
Some of you may have noticed the site was down for a few weeks. Caution: use Weebly at your own peril. The refreshed look is down to some of Weebly’s time-wasting guidance. But ironically, I'm liking it.

A special mil gracias to tío Juliancito who expertly and expeditiously got 'Don’t Panic' back online between conference calls during the lockdown in Bogotá.

Happy Easter; hope you're keeping healthy and enjoying the spring sun, wherever you are!
​

I started 2020 with some good news and with a trippy realisation. 

The news
'The previously described enhancing lesion in the right frontal pole has decreased in size, slightly but unequivocally'. Ah, don't you love the radiologist's use of 'the u word'? In other words, in late 2019 we continued to get the best of The Terminator. Today, I live to fight another day—well, another six months with high probabilistic certainty. 

The realisation
Check out 'A journey to the end of time' (https://www.youtube.com/watch?v=uD4izuDMUQA). If scientists are anywhere near correct about the age of the universe, then some basic Excel work (I knew my years in finance would one day prove useful!) indicates I've experienced ...

0.0000003%

... of all the time that has ever existed. If scientists are anywhere near correct about the life expectancy of the universe, then—yes, even as it approaches its 14 billionth birthday—the universe has only experienced …

0.0000000000000000000000000000000000000000000000000000000000000000000000000000000000000002%

… of its own life.

The Total Perspective Vortex
Instinctively experiencing that first figure (0.0000003%) as a child terrified and fascinated me. As I grow up I am comforted by insights from the Church, zen philosophy and Trin Tragula's ruminations about his wife (http://hhgproject.org/entries/tragulatrin.html). 

Today, seeing all those zeroes in front of the second figure, I chuckle that I was looking at the situation the wrong way round. Forget depression relating to how insignificant our bewilderingly teeny-tiny corner of space and time is. On the contrary, the narcissist in me smiles wryly.

We are sort of beating the universe in an odd twisted way. And by a few orders of magnitude, to boot!

November 28, 2014

Chat with Mr McKintosh
St Olaf House
Friday, Nov 28 2014 17:45 to 18:45

The calendar entry is still there. It was a dark, dank evening; an eerie silence hanging in the air as we waited outside the neurosurgeon's office in a lone hospital wing that felt more like a once-grand, now slowly dilapidating hotel (reminiscent of The Shining). Philipp waited outside; we planned to grab some food with him and JD afterwards.  

After delivering the shock ('apologies for the delay. I thought the biopsy outcome might be bad. It's actually a whole lot worse than I feared...'), Mr McKintosh spelled out (and Ingrid scribbled) two words we had never heard before.

 g-l-i-o-b-l...

He advised against Googling these when we got home. It was, of course, the first thing we did after leaving his office. Median life expectancy? 14.6 months. Medical definition of 'long-term survivorship'. 5 years.


November 28, 2019

It's a fitting day to celebrate Thanksgiving.

I am thankful that my biggest immediate health concern is a tender ankle from an over-exuberant run a few days ago. I am thankful that whatever the outcome of my next brain scan (taking place within the next six weeks), I will have amazing doctors by my side. I am thankful that over the past five years I have experienced many of my most glorious, awe-inspiring, sublime moments ever. We have made it not just five years of survivorship, but five years of thrivership (to play with a word tailored by a fellow cyclist).

Yes, 'we'. I am thankful for you, without whom—whatever your role in 'my' story has been—this adventure would not have been nearly such an amazing blast.

Sending you my love and wishing you a happy Thanksgiving.

Here does, indeed, come the sun. 

It's 23 degrees Celcius outside, Ernie started his (second!) (pre)school summer vacation today, I have no medical appointments booked for over a month.

I don't have much else to report, but it's all good news. 

After my latest brain scan (a few weeks ago) the radiologist was impressed by the tumour's ongoing withdrawal; so much so that he asked me to plan the next MRI for the end of 2019. I've lost count of the number of times I've been scanned but the average has been at least one every three months. Alas, glioblastoma multiforme remains incurable (and almost unpronounceable!) but this is an encouraging professional vote of confidence.

GBM does, however, remain treatable. Cue the DCVax-L vaccination. On Tuesday I received the last of three 'Induction' shots. The company that manufactures the treatment managed to produce three years' worth of shots. I receive the next injection in September.

Bring on the summer holidays!!
​

Today I write from the Apheresis Unit at King's College Hospital in London. 

I'm hooked to a couple of lines, one in each arm, with a whirring dull blue contraption closing the circle. An EPO boost or some other form of cycling performance skulduggery? No, the truth is more mundane. I'm recruiting foot soldiers for the next battle against The Terminator.

A long time coming
Queasy as I am about hospitals, needles and blood—it's exciting to finally be here. In some ways I've been looking forward to this for several years. While my mind was a little foggy in December 2014 (just after The Diagnosis) I clearly remember seeing my first documentary, kindly shared by the Dunkins, about the scourge of glioblastoma multiforme and one young Aussie man's battle against it. His key weapon, an ingenious and trailblazing dendritic cell vaccine, had been largely developed by his own father. The crazy thing? The father/doctor had been working on it for years halfway across the world, not knowing it would one day help his son! 

Logically, I understood the story was 'inspirational'. Still, emotionally it didn't have much of an impact: I had just suffered two seizures (courtesy of the inflammatory effects of radiotherapy), my vision was blurry, I was high on a kaleidoscope of prescription drugs. So when Libby told me a couple of weeks later that she had managed to put me on the waiting list for DCVax, an experimental treatment in the immunotherapy space, I produced a wry smile. 

'Sweet', I thought, 'but let's get through the basics first'.

(... and now that we have; thank you Libby!)

So here I am
The plan now is to lay siege on every single Terminator cell left in my brain. Yes, the latest scans have shown the two tumours are effectively dead. But incendiary GBM cells continue to float around like submersible land mines. Clearly my immune system has been struggling to ID and diffuse these. The chemotherapy had some success but also took much of the rest of me down with it.

This is where DCVax comes in: the white blood cells collected today will later be sent to a special lab where they will be trained, using a tumour sample from my 2017 resection, to take out the bad guys. That only leaves for me to bid them well (with Metallica's words):


Running, on our way hiding
You will pay dying
One thousand deaths
Running, on our way hiding
You will pay dying
One thousand deaths

Searching, 
Seek
AND DESTROY
​

'Unequivocal improvement'
In my case, it has been unusual for an MRI report to communicate unambiguously good news. And yet these two words summed up the news from my latest scan. 

It was unexpected. I had undertaken this scan only a few weeks after the previous one. Usually, significant changes in the brain take months to materialise. The report itself sounded puzzled, declaring the findings 'difficult to explain' (I imagine October's surgery was still working its magic). The intention of the scan had been to establish a fresh monitoring baseline at the start of a new course of chemo; this time an agent called carboplatin. The MRI itself has, however, left me wondering if more chemo is what I need right now.

I love the smell of 'carbo' in the morning!
No, I am not cured. Sorry, this is pretty much unequivocal too. There are still plenty of GBM cells floating around in my brain. A few will, most likely, hook up at some point and go on another ravenous rampage. The most sensible option seems to try to knock them out with everything possible. Cue the 'carbo' (as the oncologists call it, almost affectionately).

I don't know if any more chemo poison might just knock me out. I'm not jumping straight on it. We'll continue to keep a close eye on my brain, I'll suck it up if it becomes necessary. 

Mission: impossible?
You may recall an immunotherapy approach I've mentioned over the years (aka 'the vaccine', DCVax)? After waiting a while—one year, four months and nine days but-hey-who’s-counting—I was recently granted access.

It remains experimental (ie not formally endorsed by any regulatory bodies) but is probably the approach that has had the most consistent success against GBM in the past decade, extending users' life expectancy by multiple years. Side effects? As one of my doctors wryly joked, 'just one: a hole in your wallet'.

'You cannot beat The Terminator'. The truism feels a little less unequivocal today.

Ingrid, Ernie and I have just taken off [I wrote this last week] from Sydney Kingsford Smith, back to Richmond (the old one!) and into 2019. 

Into 2019? I know the year is already eight days old but jumping on the plane, ending the vacation, changing the time zone on my watch... it feels like it's time to turn the 'out of office' off and get excited about returning to business.  Of course I mean this figuratively. I haven't opened my university email more than a handful of times and my academic 'business' is more focused on global welfare than commercial wealth. I guess by 'returning to business' I really mean returning to standard, non-vacation life.

Our highlight in Australia was seeing David, Ingrid's father. He has been facing a terminal cancer over the past few years and will be the first to tell you: God only knows how much longer he has 'left'. But while he has been 'battling' (all these one-word platitudes!) fiercely he hardly bears the scars of war. Look into his eyes and you will see lucid zeal and equanimity as he prods you to sign the home visitor book, as he contemplates a range of issues from the choice of hymns at his own funeral to the legacy he leaves his family—particularly his grandchildren.

I don't know what Ernesto Pablo will remember about Grandpa' David. I expect it will be more than David imagines. You see, as brother-in-law Mick put it:


'Dad has lived a life characterized by extreme devotion to his duties, and setting the example of honour, character & leadership by his actions.’
​

As I consider my new year's resolutions—for a year which will surely comprise its fair share of dramatic academic writing, parenting decisions, and medical quandaries—and the meaning of my own life I am inspired by David's emphatic, unwavering commitment to family and duty. Imagine approaching the end of your life and having the ability to (unassumingly but firmly) state 'I never shirked my duty.'

David, I know you have been saying your goodbyes… but you're not quite dead yet! 

Do know: your legacy lives on.
​