It had been a long day; like a woozy trip to the dentist to have a tooth removed. Some local anaesthetic, a little light-headedness, an awkward mechanical structure attached to the head, a lot of sitting around with a numb ass, a few paracetamol pills for possible post-surgery headaches. The horror-inducing forceps? A tube-like machine within which you lie down with head locked in position for administration of high-intensity cobalt radiation. 

The curious thing: the least painful part was the radiation itself. The Gamma Knife performs its work in total silence. When asked for my choice of music I felt that on this day silence might offer up more perspective than I needed. After musing about some Mozart I naturally settled on Metallica.

It was surreal—listening properly for the first time to an album I had heard a dozen times. The lyrics began 'in the name of desperation, in the name of wretched pain, in the name of all creation gone insane, we're so fucked, shit outta luck, hardwired to self-destruct.' Whether deeply profound or meaningless the intensity did not let up for the next 58 minutes of surgery. 'How loud do you want the volume' the nurses asked. 'All the way up, please'.

'Did you hear that racket playing in the radiology control room?' Ingrid asked me as we left the hospital after I was discharged a few hours later. I just smiled.
​

Earlier this year I likened 'The Terminator' to a terrorist movement. The better I get to know it the more the metaphor fits.

Following the mild but persistent reports of increased activity, Ingrid and I spent recent weeks reviewing the battle plan against this agent of fear. The adversary remains a relatively stable ping-pong ball sized hub on the left. More concerning: a couple of tiny new rogue elements on the right; one the size of a pin-head, the other even smaller. Physically, I couldn't tell you any of the three are there.

The problem: to borrow from Donald Rumsfeld (you know it's desperate when you paraphrase him!) cancer cells throw up all kinds of known knows, known unknowns, and unknown unknowns. Once they get the upper hand, good luck taking back control.

So we've decided it's time to launch the next offensive. 

A low-risk drone strike
It will begin next Wednesday with a 'Gamma Knife' surgical strike on the bogeys harboured on the right hemisphere. It's a relatively routine procedure that will zap (the knife is a laser; there should be no blood!) these focal points with radiation waves; hopefully weakening them, ideally eliminating them. 

Beyond that? We'll cross that bridge when we get to it. But to give you an idea of our thinking.

A ground attack
A more intrusive approach will be needed to cripple the hub on the left. This will take the form of physical surgery with  a real knife. That means the risks go up but so do the upsides. Surgery should kill a lot of the bad guys. Secondly, ... well let me take a step back.

Chemical weapons
How is it possible for focal points to have sprung up on the right side, totally 'unconnected' from the tumor on the left? Because GBM is a diffuse condition. My brain is full of roving rogue guerillas that could at any moment convert free, healthy brain cells into the biological equivalent of suicide bombers. This is why the chemotherapy, with its indiscriminate toxicity, is both so powerful and horrifying. The chemo will be making at least a temporary comeback.

A revolution?
Returning to the second advantage of physical surgery. It opens the door to a less toxic and more sustainable future through immunotherapy--a vaccine that teaches the body to fight the cancer. Like training local forces to fight the local rebels; or like using soft power to ignite a revolution. The catch? Getting your hands dirty. With GBM the vaccine requires a physical sample of the tumor--hence physical surgery.

---

This is all quite bellicose but in the words of Mr Rumsfeld's boss: 

I just want you to know that, when we talk about war, we're really talking about peace.

A lot has happened between the two months of my last two brain scans. 

Ingrid and I celebrated our first decade together. We forgot forgot to celebrate my second '14.6 month' (GBM median life expectancy) anniversary—888 days! A couple of inspirational (and older) friends passed away. Starting my PhD research I bumped into an old foe: statistical analysis. Ernie mastered new skills: the art of running while adorably (but firmly) shouting 'no'.

... time marches on ...

The tumour? No surprises, it's still there. Growing? Most likely. Badly? Difficult to assess, even for the doctors. Again, the latest medical report feels like a nervous balancing act between 'concerning' and, to synthesise, very-slightly-mildly-tiny. Something is happening...... very, very slowly.  Physically, I still feel like it's not there. We're still being advised by outstanding doctors (well... at least not by this guy). As ever, treatment alternatives available for when they're needed.

... time marches on ...

A friend was asking how much the tumour has slowed me down in triathlons. I responded: not at all. I feel like it's given me the motivation to push harder. In fact, I can't wait to race a half-Ironman this weekend. At the same time I feel like I'm terrifyingly and maddingly living out a song I've loved for decades, Metallica's 'For Whom the Bell Tolls' (here's a classical rendition, here a rawer one). 

I like to think I've got a better shot than the five guys facing imminent death in the Hemingway-inspired song. But the chill, raging glow, stiffened wounds, shattered goals, ruthless cries… the will to be. Well, it's all there.

Time marches on.

You guys know I love metaphors. But even I’m surprised that today I mention terrorism. And shocked with awe that I, yes, quote George W. 

‘This is an enemy who runs for cover’

The short of it: the latest scan results are more confused than ever. I’ll spare you the details. I don’t really understand them. I’m not sure the doctors themselves do. No new treatment has been advised, but greater vigilance has  (ie more periodic scans). The sentences are longer. There are more ‘ifs’ and ‘buts’ and ‘maybes’ and ‘althoughs’. The words ‘disease progression’ appear for the first time—for better or for worse next to the words ‘difficult to interpret’. Something seems to be bubbling deep in the shadows…… but maybe it’s not. The report summary is in bold.  

It feels like a loud and shrill DON’T PANIC!

‘But it won't be able to run for cover forever’

As I’ve often said: medically, we’ll be all over it. 

Perhaps even more important: if there’s one thing I’ve learned about brain tumours is that the biggest danger they produce is terror. In the short term and probabilistically speaking: the tumour is as likely to harm my physical health as much as ISIS is. But my mental health? The risk of cowering in terror and just 'giving up' is almost palpable. I’m scared and sick and tired of the constant reminders the tumour is there. 

But this is also a (cheesy) message of defiance, mainly to myself. I will not live today like it’s my last day. With a little help from God, Fortune, life, this Thursday I will start my PhD; tomorrow morning I will pull Ernie out of the dishwasher as he explores its mechanical mysteries; next month I will celebrate our 10th (tenth!) year anniversary with Ing (how? Surprise mystery!); in September I will race Ironman Wales; in October I will head-bang to Metallica, live...

Now? I will go take out the garbage. Bah.

Sorry it's been a while. Some of you have asked me what's going on. As I've said, I like to post only when I have concrete 'medical news'. This time it took my oncologist longer than usual to report back after my regular brain scan.

It all started two weeks ago, a day before I was to be briefed about the latest results.

A day in the life

1524. I receive a voice message notification but don't listen to the message as I'm running around sorting out stuff around the house. The usual: dishwasher, mail, bills, Ernesto's toys, my toys (bikes!). A voice message? How old-school! Must be my dad. I'll call him tonight.

1613. I find a minute to sit down. Finally. I listen to the message. It's not my dad, it's the radiologist. The radiologist? Odd. I've never met or spoken with the man. Normally he sends a briefing to my oncologist, who then explains the results to me. This time, the radiologist wants me to do another scan. Fifteen minutes, that's all he needs. Just 15? Why? WTF?!! I call both radiologist and oncologist. Receptionists pick up. Someone will give me a call later. When later? Just 'later'. Damn it, typical.

1846. I'm waiting for the call. This sucks. I've been here before. They never want another scan to confirm good news. It's got to be to confirm something ugly. I recall how I was telling Ashik just the night before, how I knew this moment was coming, sooner or later. Not today, surely? I did not fucking mean today! I was telling him that probabilistically speaking the tumour's return is a near certainty. Probabilistically speaking? You've always been a loser at statistics! 'The tumour will be back', I had said confidently. But I had spoken in an almost academic tone, as if I was referring to a character in a dusty, long-forgotten book.

No, it is me. This is happening to me. But what makes 'me' so special? 'In the long run, we're all dead'. Hah, one of the few economics theories that have proven true. It just feels so concrete, so probable, so unfair, so soon... so... so... 

Then words (about a young namesake from the novel Dune) I had read earlier that day hit me:

It's the look of terrible awareness, of someone forced to the knowledge of his own mortality.

... so forced. That's it.

A black swan

Let me fast-forward a couple of weeks to the punch-line and spare you the roller-coaster of thoughts and emotions I experienced over the following hours and days before eventually receiving a concrete report: not much has changed, everything looks stable, but--there is a but. There is a possible increase in tumour activity. To use my oncologist's words: 'don't sweat it'.

He's right. It may be nothing. The reading of concern, even after the second scan, is within the scanner's margin of error. And even if it is something, it doesn't change things much. This is what brain tumours do. They come back. They always do, slowly but surely. All the same, I'm feeling as healthy as ever, continuing to build on my last Ironman performance (remember Wales? Time flies...) to get even faster.

I've always used the metaphor of an Australian magpie to describe my 'swoop' on Hawaii Ironman qualification. But I think right now another antipodean bird is more relevant: the black swan. I will continue paddling all out in training and in life (we're busy these days. Ingrid continues to accomplish ever greater things; Ernie is causing all kinds of beautiful havoc as he learns to walk; I'm about to start a PhD), doing it with a graceful smile.

And yes, the tumour will force its way back, sooner or later. And I will still be here pecking like hell, doing my best to force it back--God willing, creating my own statistical black swan one peck at a time.

I've never been a huge fan of birthdays and anniversaries (blanket apology to those whose birthday I've forgotten over the years ie everyone except Ingrid). I'm not sure why. Maybe they feel a bit artificial? Let bygones be bygones? Each and every day should be celebrated? Life must be lived forwards?

All the same, October brought a few tears of melancholy and joy as I looked backwards.

Today Ernesto celebrated 8 months of life with a marine-style one arm crawl. Juan turned 32 a couple of weeks ago--we didn't pay that much attention. Ingrid marked 10 years at White & Case with (yes, another!) promotion. Scott hit 40 … a couple months ago, but we partied last weekend.

I left my (actually 'his' now!) beloved bike with Scotty in Stockholm. Over a period of 3 years and 5 months I rode it over 21,000 kilometres, close to 1,000 hours, in 14 countries, surviving 6 crashes. 3 of the latter involved my brother JD. My 2nd ride was a flip over a fawn. The fawn and I were OK but my helmet split in 2. There were also God-only-knows how many near misses. The day after an outing south of Beirut part of the route was bombed. 

It was the wrong bike for a lot of the type of riding that I do--it will have a better home on the smoother roads of Sweden--but I loved every (ok, almost every) minute on it. In sharing with it the 1001 screw-ups a budding cyclist can make, I learned most of what I now know about riding, particularly rule #5. Also, it's not an exaggeration to say much of my post-tumour recovery took place on this bike.

Another anniversary approaches
It's been 1 year and 11 months since I was diagnosed with the GBM 'Terminator'. Thanks in big part to the lessons learned since, today I received another heartening MRI result: all stable. My brain, at least, remains fit to fight another day. 

Tally it all up: a collective 88 years of celebrations this month. That's 88, a number the Chinese associate with fortune and good luck, the Japanese with infinity, amateur radio operators with 'love and kisses' (but let's forget the Neo-Nazis use it as an abbreviation for 'Heil Hitler').

Whatever the number means to you, happy 88th birthday!

[Sorry, this was posted a few days late because the internet was so sketchy in Wales. Also, you may have already read most of it on Facebook]

Recently I've often found myself asking

'what the hell am I doing...'? 

Like verses in a song, the question often ends with a slight situational variation. What the hell am I doing,
... about to hit 8 hours of training today?
... riding past sunset when I started the day before sunrise?

Today's variation: ... up at 4am on the morning of the day BEFORE the race?

If you've spoken to me lately, you'll know I've found all kinds of answers. Like Walter White in Breaking Bad, the short of it is simply: 'I did it for me. I liked it. I was good at it. And I was really... I was alive.'

With my diagnosis in September 2014 another answer emerged: this tumour is trying to kill me. I've been
trying to kill it. How? Partly through training.

I'm incredibly blessed: not just to be 'living with cancer', but to be thriving with it. Almost two years ago I couldn't walk 100 metres unaided. Tomorrow I have a shot at racing 140.6 miles. But I haven't gotten here alone. My family, friends, doctors, and advisors have all been life-changing: without them I wouldn't be alive. It's fitting then, that on Sunday I won't be racing alone either: my brother Juan David will be racing his own 'solo' Ironman at the same time. Because he's working in Croatia he'll be swimming in the Adriatic, riding towards Zadar, and running around Split.
 
Why? Because we want to help other people with cancer the same way countless others--many of them faceless and selfless!--have helped me.

So on Sunday we race for ourselves and for them. We race to raise funds for Macmillan, an organisation that strives to ensure no one faces cancer alone. We invite you to join us along for the journey! If you want to add your contribution to fighting cancer here is the link:
 
https://www.justgiving.com/fundraisi…/divebombingbraincancer

A few days later...

One of the beautiful things about Sunday and about this post is that there was no mention of my tumour. Sure, the beast is still there, but there are no new updates from my last entry (I think my next scan is planned for the end of October), no weird symptoms to write about, just the incredible news that I completed my Ironman in a pretty decent time. You can see my race report at www.swoopanddivebomb.com but suffice it to say the whole Ironteam had a whale (hahah...) of a time.

Juan was not in Wales but that didn't stop him from completing his own crazy solo Ironman. He took on the 3,800 meter swim in a 15 meter pool (how many laps? I'll let you do the maths!), the ride on a rental, and the run with several fly-bys of Split airport.

We're a little tired right now to concoct our next wacky adventure, but I'm already looking forward to it!
​

Pa' dónde vas?
... is a question Ingrid and I have been asking Ernesto a lot lately, both literally and figuratively. Literally: teasingly, while he works out the art of crawling. His left side seems stronger than his right so he currently travels in circles around the same spot. Figuratively: as we plan his baptism (next week), prepare to register him at nursery (2018), and research future school options (2020). 

Pa' donde vamos?
... is a question Ingrid and I have been asking ourselves a lot. Literally: entering the sixth month of Ernie's life he'll be visiting his sixth country, Colombia. Figuratively: it will also be the last month of Ingrid's maternity leave, before a return to 'normality'. Scary how fast September is approaching.

Pa' donde voy?
Literally: I mumbled this while smiling as one of my molars cracked under the extreme pressure exerted by the dentist's pliers. An infection had formed under it (after battling through two root canals in previous years) and the simplest remedy was extraction. 

Figuratively: why the smile? After my GBM diagnosis I didn’t think I'd be around long enough to have to 'worry' about a rotten tooth! Also I was probably still on a high after having been called 'an old friend' of the brain scanning centre by my oncologist. The latest scan results remain good: 'appearances radiologically stable… no suggestions of recurrence'.

About a year after writing, in this very blog, 

How am I? Shit-scared when I look down, because—damn!!—we're flying high!

I know that the fear will never leave me. But maybe today it's a little less acute; the question a little less about how to stay airborne, a little more about where to fly next.

As any parent knows, when a newborn slumbers and gives you a small but precious window of opportunity to go do some grocery shopping, you just seize it! I was granted one of these by Ernesto a few weeks ago, so I ran out the door with him (giving Ingrid a chance to nap) and raced around Richmond’s shops like an F1 driver. As I came out of the last shop I was pleased that Ernie was still snoring away snugly in the Baby Björn. Smugly, I thought I’d go get his passport photo taken at the post office machine. Ernie's reaction?