“Mr Johnson explains the point, rarely made clear, that cancer is an inevitable side-effect of being multicellular. Most of the cells in such organisms are capable of reproducing; the greater good of the organism requires that they be constantly and assiduously stopped from doing so. But the finely crafted locks intended to keep cell division in check wear down over time, and eventually give way. The result is a cell line whose proliferation gets out of control and, worse, dispatches colonists to other parts of the body.”
Excerpt from the book review of “The Cancer Chronicles: Unlocking Medicine’s Biggest Mystery” by George Johnson.
The Economist, Sept 14, 2013
“They call you Superman.”
“Oh, you know, your leukemia and stuff. That you recovered so quickly...”
“Umm... ok... So, your doctor tells me you have a problem with your hand. Tell me about that.”
“Well, doc, I fell and broke my wrist about three months ago, and now I’ve got this...”
I once had the nickname “Superman”. Or so I have been told. It was in reference to me having acute myelocytic leukemia (AML) and having recovered quickly after a bone marrow transplant. But, apart from a dogged determination and a slightly higher than average ability to deal with pain disappointment, there is nothing terribly remarkable about my abilities.
The donor for my bone marrow transplant happens to be my brother. Which means that his blood courses through my veins. Quite literally. The marrow that once produced my blood cells (red blood cells, white blood cells, and platelets) having been destroyed by two courses of chemotherapy and a subsequent course of total body irradiation. In other words, the medical team that specialises in such matters, poisoned me (twice) and then nuked me. Thankfully they also stimulated my brother’s bone marrow (after checking for compatibility) so that stem cells from his marrow overflowed into his bloodstream. They then took some of that blood and gave it to me. At the time of the transfusion (or “transplant” as the blood now contains a large number of pluripotent stem cells) I didn’t have any white blood cells to repel a foreign invasion so my brother’s stem cells were able to resettle in my marrow cavities with nary a peep of resistance. Within days they started producing the full gamut of blood cell lines. Those squatters still reside there.
So, it’s my body. But with my brother’s blood. To make this clear: should I commit a crime and accidentally drip blood at the scene, my mouth swab would reveal a DNA signature quite different to that from the blood I leave behind. And, should it come to that, on the basis of DNA evidence, I walk away scot-free. And my (nonidentical) brother takes the rap for my misdeeds.
Suck on that Sherlock.
Leukemia, like all cancers, is a horrible, emotive word. It means you have a pretty high chance of dying sooner rather than later. Not all leukemia’s are the same. And not all leukemias are treated with a bone marrow transplant (BMT). BMT has significant complications. Assuming you survive the first few hurdles and make it to the start line (ie you don’t die from toxic side-effects or from some overwhelming infection during induction and consolidation), there’s that matter of graft versus host disease (GVHD). GVHD is where the transplanted blood cells recognise the host as foreign and strike up an immune response to the various organs/ systems of the host. A “little bit” of GVHD is generally regarded as beneficial especially if the disease being treated is aggressive or incompletely controlled. The theory being that a small amount of GVHD will recognise and destroy any remnant leukemic cells and thereby reduce the risk of recurrence. Any more than that “little bit” is bad. Significant GVHD is a truly wretched situation.
Just over fourteen years ago, TM, a girl my age, sat me down and told me about her transplant experience which took place a year before my scheduled transplant. She told me that BMT was a big deal but reassured me that things would be fine. That the medical team and staff were exceptional. She touched my arm, smacked the back of my bald head, and told me that there aren’t many occasions that we get the opportunity to reflect on what is important in life. Fourteen years ago I had my transplant on the same day, in the very same HEPA-filtered room as TM. A few years later TM passed away from complications associated with the treatment of GVHD. In 2000 the survival rate following BMT was 60%.
Since my transplant I have seen a number of other people with leukemia either as a recommendation through the Leukemia Foundation or as patients during the course of doing my job. On one occasion I was approached by a well-heeled, well-informed lady whose 14 year old son had just completed the consolidation phase for AML. She had a clear understanding of the next step (a bone marrow transplant) and had heard that I had made a “flawless recovery” (not entirely true). That I had integrated back to a normal life free of medications and complications. We talked about her son: how he was coping at school, whether he was still playing sports, about the medical team treating him, and about his experience with chemotherapy and radiotherapy.
But she was here to talk about my BMT. She wanted to know what she could do to make sure her son got the same result. She leaned forward to emphasize the fact.
“So, what did you do?”
I was stumped. My noncompliance came to mind. Like others whose proximity to a predicament lends a belief that we know more than the learned experts who have studied the situation but never lived it (think diabetes, asthma, smoking...) I too thought that I could make a better call on certain aspects of my treatment. I didn’t tell her that. I mumbled something about having a good diet, family support, staying in contact with friends, the importance of having distractions...
The Lugano Charter was drafted in October 1996 in the southern Swiss city of Lugano (right on the border with Italy) and forms the backbone of the UCI’s technical rule book outlining what is allowable in bicycle racing. The UCI, of course, being the Union Cycliste Internationale (cycling’s governing body) for the edification of those unfortunate enough to have blundered upon this blog without a bicycling background. And on that note (mindful that this blog is often impenetrable for those that don’t ride a bicycle and mostly irrelevant for those that do), the defining moments linked above are Greg Lemond 1989, Francesco Moser 1984, and Chris Boardman 1992: competition cyclists whose results caused consternation amongst the suits at the UCI.
The Lugano Charter was the UCI’s response to the flurry of technological innovations (and a couple of novel cycling positions) deemed to provide their protagonists an unfair advantage against other bicyclists who raced against them. A master plan by the UCI to (re)assert control after a decade of decadence and to return bicycle racing as a measure of human ability before it morphed into some kind of sanctioned pageant for a technological arms race (notwithstanding the inevitable conflicts trying to align such an ideal to a sport inextricably intertwined with technology). At the turn of the century this grand covenant of rules and regulations got carved in stone.
These rules, which specifically govern road and track racing, are particularly onerous because speed (ie winning races) in these disciplines is hugely affected by aerodynamics. And significant gains were being realised in the 1980‘s - 1990’s with advancements in carbon fiber technology and experiments in novel cycling positions. The Lugano Charter put an end to it. The vagaries of what is, in essence, a philosophical position (see links above and Oliver Penney’s excellent commentary here) and the general lack of technical knowledge amongst the commissaires engaged to administer it didn’t particularly endear the UCI overlords to the community they served. That the UCI, under a change of guard, has started to look into the charter’s relevance in contemporary, blue-ribbon racing events is generally regarded as a good thing.
A lot of things don’t make sense. And it’s difficult to pass judgement without understanding the full context of the events that lead up to it. Like why so many people drink coffee. Or how Mr Verbruggen and Mr McQuaid (the UCI’s old guard) managed to preside over some of the darkest days in professional road racing: doing nothing when rumours of impropriety were circulating; denying everything when rumours became fact; then entrenching their positions when professional road racing sunk to the credibility of a Jamaican sprint team (but with white people and better scenery) managed by a caricature of Sid Blatter and his FIFA friends.
Hein: “I think we should tell them that we fucked up. Like really fucked up”
Pat: “Just smile at the camera.”
It could have been so easy.
The Lugano Charter, despite some failings in application, was a good idea in the context of its time. Yet when the resolutions were ratified they were soundly criticised by the cycling industry as being heavy-handed: a blunt tool for stifling innovation. Being young (at the time) and identifying myself as a clichéd road cyclist I too bought the industry view and thought that the UCI was being unnecessarily backward. Lemond was a legend. The first non-European to win the Tour de France (1986) and doing so again in 1989 on no less than on the final day, making up a 50 second deficit and winning by a mere 8 seconds. A superman that defied the odds and beat a stronger man by finding a smarter way of doing things. And there’s the rub. In 1989 Laurent Fignon was the better rider. And he lost.
Eighteen years ago the UCI (whose very existence, we must remember, is to govern professional cycling) drew up a set of rules to level the playing field. It is now known as the Lugano Charter. Sixty two years earlier, in April 1934, the manufacturers of “upright bicycles” (ie the type we now ride and generally accept as a “bicycle”) successfully lobbied the UCI to ban recumbent bicycles from racing against them.
On the 7th July, 1933 a cat 2 cyclist (a nobody named Francis Faure) broke Oscar Egg’s hour record.
Like the recumbent ruling made sixty two years before it, the 1996 Lugano Charter set the context in which road and track racing could take place from 2000 onwards. It made sense in principle even if certain technical aspects within it didn’t. That such rules play a pivotal role in the desirability, marketing, and (ultimately) the sales figures of bicycles and their related paraphernalia is beyond doubt. Recumbent bicycles have certain shortcomings for sure but the 1934 ruling did much to diminish their presence and quietly nudge them to the fringes of the bicycling community. The (inexplicable) banning of Cinelli’s wonderful and immensely popular Spinaci bars(along with copies made by 3T and others) from mass start races in 1997 sent the company, founded fifty years earlier, to the wall. But to say that such rules stifle innovation is a failure to recognise the capacity and flexibility of human ingenuity.
The 2012 Giant TCR Advanced SL0. A world-class race bike for AUD $7999. And UCI legal to boot. With vertical integration not seen since the days of Raleigh, when this 900lb gorilla of the bicycle world announces that you will ride 650B/27.5 wheels off-road in 2014 then… well, we'll leave that topic for another day.
Fastest human powered vehicle: Velox 3 ridden by Sebastiaan Bowler to a speed of133.78 km/h (83.13mph) at Battle Mountain, Nevada (15 September 2013).
Regulations that restrict technology in a technology-based sport need updating from time to time. That the UCI relaxed the draconian rules for the hour record in May and is currently rumoured to be considering allowing disc brakes for road racing and dropping the (now antiquated) 6.8kg weight limit can only be seen as a good thing. Most of us want to see a level playing field. And many of us want to see rules that are relevant to our lives.
In a world where the limits of human physiology are clearly determined, racing statistics readily calculated, and money buys everything from top-end race kit to in-depth knowledge from veterans, experts, and tech-geeks, we still want something that excites us. A competition where winners win by talent, endeavour, or blind luck. Or perhaps all three as Steve Bradbury showed us in 2002.
Where we are now leaves little room for one person to stand tall above all others. Yes, there are many exceptional people. But no superman. At least not one that doesn’t raise the spectre of cheating. Professional sport isn’t the real world. It’s a proxy for ideals we want to see in our lives. Strength, skill, courage, determination, confidence, teamwork, attitude... so why not add ingenuity into the mix? Shake things up a bit.We have come a long way over the past fourteen years. Information is everywhere and change happens quickly. The rules should reflect that.
Critics of the Lugano Charter say that it stifles innovation and that it is ambiguous for a technical document. The UCI counters that the charter is a philosophical position to ensure the sport of cycling remains one that respects human athleticism.
The philosophy behind the Lugano Charter did not stifle innovation. It took away superman. For superman doesn’t really exist. We imagine him.