Remember if you will, the scene from the Deer Hunter in which three fellow prisoners are forced to play Russian roulette. Stephen loses his bottle and is forced by the guards into a rat infested underwater cage. He doesn’t make it out of the cage alive. The two remaining prisoners, Nick and Mike are allowed to play on using three bullets. Luckily for them, they are able to overpower their captors and escape into the murky undergrowth of the Vietnam jungle.
How do we respond when the stakes are high? Some would say that calculated risks are part of everyday life. We have a greater propensity for risk-taking when we feel we have some control. If we are the car driver rather than the passenger we invariably believe that the risks are put in abeyance. But in contrast, in the game of Russian roulette it is entirely down to uncontrollable chance: there is no possibility of changing the odds by skill or tact.
The game of Russian roulette is not confined to Vietnamese war films. For us multiple sclerosis sufferers, the available disease modifying drugs (DMDs) are accompanied by known risks. What fascinates me is how we as individuals respond to these risks. Do we have the faculty to make sense of what is presented to us? In a world of choice, do we have the ability to make informed judgements? For me, I would rather delegate this job to the consultant. The stakes are too high and I am too personally involved to make a rational decision.
As in the Deer Hunter, the probabilities are subject to change (remember the three bullets). It seems as though, at one point you are presented with a revolver with 100 chambers and one bullet: at a latter point you are presented with a revolver containing 50 chambers and two bullets. This appears to be the case with my own drug of choice, Tysabri. The dreaded outcome or bullet in this case is known as progressive multifocal leukoencephalopathy (PML). It’s not something that you want to get – ‘30 percent to 50 percent of patients with PML die within a few months of diagnosis’. Those who survive the infection may face permanent disability (like I really need that!).’ Here’s two other things to throw in the mix. Firstly, there is a virus known as John Cunningham (JC) Virus which many of us have (70-90% of the population). For those lucky enough not to have the virus, the risk of PML is avoided, because it is this virus that triggers PML. …Stay with me, it does get a little clearer. So how many barrels are in this revolver? Well this depends on three factors which may put the MS patient at a higher risk: ‘treatment with Tysabri for more than two years; receiving other kinds of immune-suppressing medications; and testing positive for antibodies to the JC virus.’
Well, I’ve moved well into the third year now for Tysabri and it seems as though I do carry the antibodies for the JC virus (like many people). Over time I’ve had to exchange one revolver for another: one with the same number of bullets but fewer empty barrels. I would have been quite happy not to have known the results of the antibody test because it would make no difference in my decision (also, being free of the antivirus today is no guarantee that it will not be present tomorrow). This is one of the occasions when the patient wants to be uninformed! I don’t want to know whether the gun is loaded or not.
Why should I care about these conundrums? After all, it’s not as if I have quite so much to lose these days. Yet, ironically, I have become more precious about keeping things ticking over. Perhaps I should be cautioned by the African proverb :
… It (life) is like holding an egg: grasp it too tightly and it will drip through your fingers: hold it too loosely and it will drop and break.
Let’s get back to the scene from the Deer Hunter. At some point the game of Russian roulette may become too risky. I may choose to bottle it (stop the treatment), and be thrown into the underwater cage (which in my case takes the form of secondary progressive multiple sclerosis). This seemingly hopeless stage for which drugs can do nothing, nevertheless empowers the captive to make their own escape (through diet and lifestyle). Unlike Stephen in the Deer Hunter, sufferers have indeed found a way to cohabit with this unwelcome guest.
There is of course the option taken by Nick and Mike in the Deer Hunter – to turn tables on this pernicious disease and escape from its imprisonment. The escape attempt might involve stem cell research or some other scientific breakthrough. In the meantime, we live by improving the probabilities and making our cage more commodious.
Thank you for allowing me to indulge my thoughts with you. My intention is not to offload my problems. Everyone faces questions about risk and probability in managing their own health or those of people close to them. Evidence suggests that we as humans are consistently poor at making such decisions. In an era of health care reform, greater choice and access to information, we should be better placed to deal with whatever hits us. But sometimes greater choice and more information simply incapacitate us. Sometimes you just wish the doctor could make the decisions for you.
This article describes my own personal ‘sensemaking’ regarding Disease Modifying Drugs (DMDs) and as such does not come with any medical authority. Moreover, I’m sure that every sufferer has a different story. However, I’m a great believer in narrative. The article focuses on downside risks (in this case, the likelihood of PML following Tysabri infusions). Of course there must be an upside risk as well: otherwise we wouldn’t endure these uncertainties. Generally these upside risks (or benefits) take the form of ‘remaining stable’- delaying the onset of disease progression. Again, for the patient, it’s hard to get excited about this. It also requires envisioning what we would be like without the treatment. It is like having the Sword of Damocles hanging over us. Would we perish in the rat infested cage or would we be empowered to make our own escape?
“To know yourself, look at your fears. Fear in itself is not important, but fear stands there and points you in the direction of things that are important. Don’t be afraid of your fears, they’re not there to scare you; they’re there to let you know that something is worth it.”
― C. JoyBell C.
Please share your own perceptions, fears and sense making by clicking ‘Comment’ for this Post- whether you are a patient, family member or someone dealing with decision-making in daily life.