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The beauty of climbing one of life’s hills is that getting to the top reveals more hills to be climbed. Three examples: White blood cells. At the beginning of Round Four, I was dismayed and a bit alarmed to see they had dropped from over 7 billion per litre to 4 (the normal human range is 3.6 to 11.5). Neither my doctor nor nutritionist were surprised or alarmed. ’That’s just the way the treatment goes’, they said. Our own ColombOZ home medical team advised boosting spinach intake and cycling uptake. My oncologist’s reading earlier today, the start of Round Five: 'I’m happy with you'. The blood monitor’s reading: 6.2. Of course, this hill conquest is small but it helps keep me in the race as I cling on (for dear life), waiting for the breakthroughs in neuro-oncology to keep coming. Surrey Hills. Getting back out there was a big team effort. Scottie almost killed me as he transitioned from the Swedish roads during a weekend visit. Then it was Nina’s turn: she prefers mountains and is training for a Tour de France stage. Still, she pedals up the grades as smoothly as a ballerina with sublime pacing. My brother is the opposite: possibly the worst pacing I've ever seen, he doesn’t train much, but when he goes out he raggedly bursts up the inclines like a mountain goat. Imagine me clinging on (for dear life), knowing I need my team to keep rolling up ever bigger hills. Ironman. Congratulations to Grant for this incredible achievement. Thanks for taking me along for the (hilly!) ride. Next time I race one of these monsters I hope it will be with you, as I cling on (for dear life). And you can be sure I’ll be shouting VASBYT! ______ Vasbyt: South African. Be stoical: ‘I am expected to vasbyt and bite back my tears’.   The beast that is my tumour started out life as a lower-grade creature, probably taking several years to grow and finally growl. As I mix my veggie smoothies these days, I chuckle about about all the champagne-soaked evenings of ignorant bliss, and reminisce about the songs that may have been a missed warning:
All alone On the edge of sleep My old familiar friend Comes and lies down next to me And I can see you coming from the edge of the room Smiling in the streetlight Even with my eyes shut tight I still see you coming now Oh, I think I'm breaking down again When doctors ask ‘how are you feeling emotionally? Are you angry?’ I consider my answer, how the best way to understand it might be to grab a Walkman, crank it up to maximum volume, and press PLAY on Guns n’ Roses’s most raggedly enraged hits--Back off Bitch, Dust n’ Bones, Get in the Ring, Nightrain; the kind a teenager would have relished while blowing shit up over an Axis of Evil state on an F15 Strike Eagle III mission until the AA batteries began succumbing to their long-drawn-out demise and the tape reels slowed so much Axl Rose’s voice started hitting bass notes ‘well, I got one chance left in a niiine liiiife caaaat’… STOP. I don’t mention any of this. I smile. ‘I’m fine’. Because I am. I think a more appropriate comparison is that GBM is painful the way a treadmill is. If you keep fighting, you may just stay on. And maybe the going gets tougher the longer you’re on there. And the thought of crashing out is scary (you may even play some Guns n’ Roses). But you keep running and you get stronger (I'm almost down to zero headaches) and you keep coming across new foods and supplements and medicines (this week: check out polio vaccines at Duke on 60 Minutes) and doctors and prayers and hopes. And then you realise that what you thought was your top running song was actually your top survival song all along Race, It's a race But I'm gonna win Yes, I'm gonna win And I will light the fuse And I'll never lose And I choose to survive Whatever it takes This weekend was beautifully boring, as my wife and I admired the birth of spring in the Alps. Our Swiss friends warned we’d have a difficult time with the weather: too muddy to walk, too slushy to snowboard, too wet to head outside, too warm to stay inside. They were right, but our low British standards came through and we still had a blast, juxtaposing bits of boarding, napping, spa-ing, eating and watching trashy TV. Yes, there was enough smoothie-making and pill-popping to remind me I’m still ‘fighting’—or whatever you want to call it—and should LIVE EVERY DAY LIKE IT’S MY LAST. A spirit that makes me both laugh and cry: constant carpe diem is exhausting, like fighting for a drug-corner in Baltimore on The Wire: ‘I’ve been living today like it’s my last, and before I even got to lunch I realized if I was doing this daily I’d wind up killing myself before dinner. And then it really would be my last day. Every day. And I wouldn’t even have had dinner.’ (http://thebrainchancery.com/2013/11/04/living-every-day-like-its-your-last/) If only because I want to return to these mountains, I made sure dinner did come about. Prost to wienerschnitzel, rosti, and Swiss (red!) wine. Prost to boring.   Did you see Cervantes’s tomb was just found, 399 years after his death? When you pick up his work, it’s hard to believe it’s been that long. I picked up Don Quixote (an edition we bought in La Havana a few years ago) the other day and was greeted by a postcard. It read: Sep 22. ’56 Nearly 3pm My dearest Hazel rang me this morning as you had asked her to. I never met Mrs Madden but she must have been a very sweet person, from all I have heard of her, and she will be terribly missed. But just between you and me, dear, I’m sure there is no need to grieve for her, only for the sad bereaved ones. The one thing one hopes, at our time of life, is to travel the long road from health to death with sweetness and dignity, without pain if possible, and without the loss of one’s faculties - as she has. And she was surrounded by the love of her family, never lonely. Bless you, my sweet, get rid of that cold. All my love, Toots  God bless Mrs Madden, and thank you to Toots for her vision of the good death. 'Long road... sweetness and dignity... never lonely'. I will fight for something like this, even if the doctors might understandably chuckle cynically about the impossibility of such a goal. My MRI last week was a good start. I’ll spare you the technical details, but one doctor called it a ‘winning’ outcome, falling in the ‘top 5%’—with the tumour having shrunk a bit, something that ‘should not be taken for granted’, especially so early on. Still, all this signifies is that I have a sturdy foundation from which to battle on. So how are we going to battle on? What are we firing at the tumour?
Looking at my treatment tracking table, you may think ‘this mix is almost as absurd as the "nearly 3pm" in the postcard!’ That's right. I love Don Quixote for showing that ‘in order to attain the impossible, one must attempt the absurd’. There’s one final absurd ingredient that I’m convinced will prove a game-changer: my 'nearly 3pm' dose of flat white. ‘Naughty dairy!’ exclaims the nutritionist. 'Chill, that’s actually almond milk you're relishing'... most generously refrigerated by my friends at my favourite cafe in the whole wide world. Thank you, Butter Beans.   One of my first thoughts after receiving the GBM diagnosis was ‘even if I ever get back on the bike, I’ll never complete the Richmond Park 3-lap Challenge ever again’. It was a curious thought: the ‘Challenge’ is no Tour de France. It simply involves cycling around the park three times in under 60 minutes, a completely arbitrary marker. Surely more important: the medical-death-sentence and bike-laps-game is a bizarre juxtaposition. Why think it? Maybe because cycling makes me happy. Maybe because I’ve done so many bloody laps of the park (249 anticlockwise timed ones). Or maybe I see that magic hour as an expression of life itself, in the form of a capability close to my heart. In any case, I attempted the Challenge last week with my brother, and experienced a few lessons along the way: it ain’t over till it’s over; the inches are all around us; we = power (thanks JD for playing domestique!). Yes, they’re cliches, but they’re powerful truths that will be valuable in my race with the tumour; a race in which I completed another lap today. Four months ago I had the MRI scan which revealed the tumour’s presence. Today, I had my first post-radiotherapy scan. For those of you who haven’t had an MRI: it’s the perfect torture for a pained head, as it metronomically shrieks, roars, thumps and clatters. Nurses offer to put on music in the background but this is, at best, offensive to the artist (I ‘listened’ to some ‘My Way’ during the first scan. Sorry, Frank). As your head is violently shaken like maracas by a zany madman high on dexamethasone (a steroid that fights inflammation but makes you hyper—one of the first medicines I was prescribed) you want to run, but of course you’re told to hold deathly still in the most claustrophobia-inducing of chambers. The punishment if you don’t: restart the whole thing. The doctor will give his verdict on the MRI on Wednesday. But symptomatically: my November MRI hurt so much that I knew something was very wrong. Today, I forgot to press the elevator button as I smugly ruminated on how peaceful the experience felt this time round. The elevator doors opened on the wrong floor, the chemotherapy floor, where I’d had a contrast agent injected just before the scan. I was sternly asked to step out as a body bag was rolled in on a stretcher. A bystander burst into tears. I was too shocked to react. May they rest in peace. A Godly and Fortunate reminder that the race is still on, will always be on, and it’s going to have its hellish moments. But that’s just life, and I’m still in it, surrounded by an incredible team, with every opportunity to give every pedal stroke everything. My Richmond Park time? 59 minutes and 58 seconds. 
 I spent much of this week analysing incentives when considering 'who should pay the costs of higher education?' for a university essay.
I was amazed to learn Cuba eliminated 40% illiteracy in a decade thanks to a bit of solidarity and thoughtful planning… a reminder to be grateful for participating in a health system that works for everyone. Well, kind of: every so often I want to pull my (imaginary) hair out. Example: ‘you can try the clinical trial, but for the moment there’s only space on the waiting list. Oh yes, we know GBM median life expectancy is 14.7 months’. But I do understand we have Incremental Cost Effectiveness Ratios to take into account. I was amazed to learn how dominant the US remains in all types of global university rankings… a reminder to be grateful for a GBM medical market in which a seven-figure fee will get you into the best US hospitals, and a six-figure one will get you into your choice of clinical trial treatment. To quote the Guide: ‘this planet had a problem: most of the people living on it were unhappy for pretty much of the time… most of these were largely concerned with the movement of small green pieces of paper, which was odd because on the whole it wasn't the small green pieces of paper that were unhappy’. Happily, my five-figure (thank you, insurance) oncologist offered to write out a prescription for a promising medication we recently learned about—only that we need to tell him what the right dosage is. Incredible market efficiency or market failure? I’m not sure. And then there’s an incentive that transcends them all: fear of death. This is what drove a Harvard doctor with GBM to concoct a cocktail of 'regular' drugs—targeted at everything from acne to insomnia—to supplement the classic surgery-radio-chemo trifecta. Ben Williams has beaten the GBM 'Terminator' for an insane 19 years. Surprisingly, his approach hasn’t been taken very seriously by medical planners (too wacky?) or the market (the cocktail costs four-figures). Medical experts told Prof Williams that he might hurt himself. His response: ‘Hurt myself? I had the most aggressive kind of brain tumour. I was expected to die in a year. What did I have to lose?’ Another man who was toughened up by a bit of terminal cancer: Doyle Brunson, The Godfather of Poker. He’s earned seven-figures in prizes while battling cancer for decades. My own milestone this week: a two-figure tournament win. All in! Welcome to your life, it's your only one.  I’m taking a break from (university) essay writing to jot down my thoughts. Funny how, with the pressure of the assignment deadline next week, two sentences in I feel like writing this blog entry is taking an eternity. Yet no doubt the next few days will go by in a flash. Another flash: almost a month ago I celebrated the end of radiotherapy (the doctors say I should continue to feel its benefits over the coming month) and my birthday, who I share with a hero: Johannes Chrysostomus Wolfgangus Theophilus Mozart. Another milestone: I got on a plane for the first time since September (I told you I'd aim for boring updates). Having completely lost track of time rambling through the streets of The Hague, my wife and I kind of ran into the man himself when we rediscovered the flat where about a quarter-century ago I first listened to classical music. That first piece was in all likelihood The Magic Flute. I think even at that young age I appreciated the lighthearted, child-like side of Mozart’s character. A day back from The Hague and I went to see the opera here in London (I booked it months ago—fate or coincidence?), and this passage struck me: ‘Love is my guide -- She will strew the way with roses, for roses are always found with thorns. It will protect us on our way. In a magic hour, my father Cut it from the deepest roots Of a thousand-year-old oak Amid thunder, lightning—storm and rain. Come, now, and play the flute! It will guide us on the dread path’. The subtler and often darker depth of his work became apparent. But always towering above it: the joy of the journey itself, of love, of time and the magic that we can make happen within it, even if only for ‘an hour’ (like Mozart did, writing The Magic Flute just before he died, pretty much at my age). And hearteningly, we stand on the shoulders of giants and can use ingredients alchemised during a ‘thousand’ years. It reminds me of the veggie elixir I am sipping as I write; devotedly crafted by my mother after mentoring from my father, who learned the mystical recipe from my grandmother. As my mother is due to return to Colombia, it will soon be time for me to step up to the blender. In Papageno’s words… gulp! In Tamino’s words: play on!!   The Pan Galactic Gargle Blaster: ‘an alcoholic beverage considered by the Hitchhiker's Guide to the Galaxy to be the "Best Drink in Existence” … effects similar to having your brains smashed in by a slice of lemon wrapped round a large gold brick … you should never drink more than two Pan Galactic Gargle Blasters unless you are a thirty ton mega elephant with bronchial pneumonia.’ Fancying myself just such a beast suffering from just such an ailment (almost), I had a few of these each of the past five nights (don't tell my nutritionist!). I don’t remember much from the first two except the nausea. The morning after the third, a new fastest 5k time for 2015, but wow did it knock me out. The day after the fourth, a trip to the other side of the city felt like an odyssey to the other side of the world (wait, it kind of was; we crossed the meridian line at Greenwich). Yesterday, I confess that in a moment of weakness I chose The Wire over the Word at Mass. Today, in contrition, after what ‘alcoholics refer to as a moment of clarity’, I realised the Pan Galactic Gargle Blasters were actually Temozolomide, a chemotherapy drug which works much the same way as the Blaster: by aiming to blast everything in your body except you ... but note the jolly colours and friendly 'Temodal' brand name. A good time to remember Murakami: ‘pain is inevitable, suffering is optional’. And a good time for a glass of red wine: 23 days until Temo time returns. Cheers!! My nutritionist would approve.  Headaches are down to 1 out of 10. Picture a 10 being ‘kicked in the head’ by a burly Norwegian dude as described by a doctor there last summer… probably a Viking (the kicker, not the doctor!) and probably the tumour ‘rearing it’s ugly head for the first time’, to quote my current oncologist. Another first: yesterday I didn’t take a single painkiller, the first time since last October. Good news, but how do I get the pain levels down to 0 out of 10? My experience is that there’s little consensus about how to tackle cancer. One respectable doctor told me ‘the wife of a patient—a guy about your age… she put him on a strict anticancer diet; kept him off of sugar, bread, and dairy; followed all the rules’. My own wife and I waited for the punchline anxiously… ‘Well, he withered away and died’. My nutritionist retorted a few days later: ‘we’ll change a few things in your lifestyle and you’ll be fine’. Then there’s a friend who’s beaten cancer for years while enjoying respectable quantities of fondue and absinthe. The counterfactual: David Servan-Schreiber, a guy who used wholesome living to survive a brain tumour for two decades; all while writing a book about his experience and setting up Médecins Sans Frontières in the US. I don’t know which side is right, but I doubt anyone has ever overdosed from probiotics or a shot of wheatgrass. So taking a leap of faith, I walk into the nutritionist’s office. We speak about avoiding and fighting the poisons that have become so pervasive in our world: electromagnetic fields (EMF), dioxins, processed foods, pesticides, sugar, growth hormones, table salt, sulphites, monosodium glutamate, mercury… so many I get lost pretty quickly. How to navigate this minefield? I have mixed feelings about her recommendations. Drinking lots of veggie smoothies to strengthen the immune system? Makes a lot of sense. Blocking EMF caused by ‘bad’ electronic devices by installing ‘good’ electronic devices? Probably a bit late. Natural deodorant? Ooooh yuck am I going to stink? Redoing a root canal in case of recurring infection? Ouch. Wearing an EMF Protection pendant? Now I’m getting scared. Indeed, these conversations always put a mix of hope and fear into me. It’s good news (hopefully) to know there’s so much I can do (hopefully) to boost my health. But has our world really become such a dangerous stew of deadly poisons? Like a bad horror movie, I just don’t know which way to run. And when that paranoia hits is actually a good time to literally run… head on outside, crank up some boisterous rock band, and just run ‘till it hurts. Maybe pain levels of zero are unrealistic at best and boring at worst. Maybe 1 out of 10 isn’t so bad. Maybe there’s something in the words of a crazy friend: ‘I’d rather be not-bored than happy’. Or to paraphrase one Zen master, the pain reminds me I’m alive. Just don’t tell my nutritionist.   When I first shared the news about the tumour, one of my favourite responses was ‘This thing is like getting in the ring with Mike Tyson’.
How to fight back? I’ve received a lot of valuable advice, with each person sharing a different perspective. Oversimplifying, some have simply responded ‘holy shit’. Others have told me ‘all that is needed is the loving, calm acceptance of God’s will’. One friend asked ‘are you allowed to get drunk? If so…’ And then, many have focused on choosing the best treatments (mainly with doctors in hospitals; although Amazonian healers were brought up by my dear mother). Today I’ll tell you about 'standard of care'. For GBM, this brings with it today the same aggression conveyed by words I’ve heard often over the past months: ‘Fuck Cancer’. The radio-chemo one-two combo is all about hitting hard, closing your eyes, and seeing what happens. Usually this strategy will put a few scratches on the opponent; but as with Ali’s rope-a-dope, the tumour absorbs punch after punch before coming back with a knockout blow at some point. So respect to my oncologist for having healed many of the bruises from Round 1. These included a ringing ear, headaches, tiredness, vomiting and seizures. If you prefer hard figures: my ‘Karnofsky Performance Status’ must have shot up from around 50 (eg disposable handheld urinal in hospital) to 90 (eg 5k race last week, but don’t tell my nutritionist!). Encouragingly, this upward trend goes on, and is expected to continue for at least six further weeks as the treatment takes full effect. Looking ahead to future Rounds: GBM is truly like Iron Mike. It’s aggressive. Having your ear bitten off is the least of your worries. But you cannot counter-punch nearly as hard because it’s got hold of the most sensitive part of your body. You can only throw so much relatively precise radiotherapy at the brain (no more for me) and pump so many imprecise toxic chemotherapy agents through your body (I may be done with this stuff by June). Fortunately, many supplementary and alternative treatments are being trialled around the world, opening up new ways to stay in the fight. Perhaps the most promising involves teaching and priming the immunological system to use new jabs so it can punch in the right place at the right time. We’re exploring these approaches with myriad doctors for use in the longer term. And then there’s learning to love to hate electromagnetic fields and Evian. Yes, I’ll tell you about this nutritionist I keep going on about next week. |
