Wednesday, January 3, 2018

On Fostering Illusions and the Qualitative Leap

What do you do when well-meaning people dear to you advise you to ignore your doctors? (And what if the doctors are wrong?)

I generally rally against non-scientifically verifiable medical claims. I'm pretty open minded and willing to try anything, but I also scrutinize any available research before I write off some new thing as the next solution to everything, like coconut oil or vitamin D. A year ago I wrote about people trying to peddle naturopathic cures to me after I was first diagnosed, but more recently I've been challenged by some scientifically-minded friends and family over some of the changes I've actually adopted in my life after all that cancer stuff.



Some doctors have told me to keep my weight down, eat better, exercise regularly with a compression sleeve, and do daily drainage manipulations and breathing techniques, and I've totally jumped on board. Teetering dangerously close to the "overweight" category on the doctor's charts (I'm still a whole category away from obesity), this has included trying to drop ten pounds, which makes this the first time I've really actively tried to lose weight in my life, and it's way harder than I ever imagined. To help scaffold my faltering willpower, I've asked my adult kids, who have moved back home, to please keep all junk food in their rooms instead of in the kitchen.

However, having scoured the research, there's not really anything to show conclusively that any of these things will necessarily prevent lymphedema blowing up my arm or of the cancer returning. And then there's that one doctor who told me not to do anything differently at all, but just to live my life normally, so I've had some variable guidance at best. Even compression sleeves haven't been well studied. And yet, despite the fluctuating claims, I'm sold on doing all the things. None of it costs much in terms of time or money, so why not do it? But then, why not take handfuls of supplements while I'm at it? Is there a difference?

This hit the boiling point when, even though many of the doctors on my team are convinced that weight control is a huge factor in reducing risk factors, my son kept showing me evidence to the contrary or questioning the studies that show any connection. My doctors made one error in judgment with me, so who's to say they haven't made more? My kid's main complaint is that BMI is largely inaccurate, so he throws out studies that show a strong correlation between BMI and cancer recidivism, and he's concluded that weight has nothing at all to do with cancer or lymphedema.

I told him to stop it.

And then he told me about a study that does show a correlation between weight and cancer, but only in mice, which doesn't necessarily mean anything for humans.

So, to obliterate this line of inquiry, I had to really figure out why I was following these possibly less substantiated claims when I rally against so many others. And I wanted to figure out why it all bothered me so much for him to question it since I spent my life teaching my kids to question everything (but just not this). It wasn't enough to validate the science for him, I wanted to stop the discussion completely, which isn't like me at all.

The science is a bit dubious. We generally agree that smoking causes cancer despite the fact that most smokers don't get lung cancer, and many non-smokers do, but smoking has been determined to be a primary cause because of specific carcinogens in cigarettes. The link between cancer and weight is similar in that it's multifactorial, some very slender, athletic people still get cancer, for sure, but it differs in that there isn't that one element we can point to to clearly suggest any causation. Despite that, everyone from the American Cancer Society, Cancer Research UK, World Cancer Research Fund, Breast Cancer Now, National Cancer InstituteCancer.net, and LE&RN says that there is some correlation between excess weight and cancer, significant enough to suggest people monitor their weight. So, as far as illusions go, this isn't really that illusory. There's no certainty that weight gain causes cancer, but there is a body of evidence that leans towards weight loss being a wise course of action. So, from a scientific perspective, there's that. And on the other side, I think my son, on a  laudable crusade for science and morality, is concerned with anti-fat-shaming, which might be driving his quest to find fault with every study that finds a correlation between health concerns and weight. (There's no bad food including food lacking nutrients, and people shouldn't actively try to lose weight because there's no connection between weight and health.) Or maybe he just doesn't want to keep chips in his room.

Nevertheless I also concede that part of this IS kind of a superstitious belief. I say "kind of" because there is evidence it might be accurate to conclude that lowering weight will help prevent cancer recurrence; it's clearly far more accurate than concluding that stepping on a crack will harm your mother, or that Bach remedies do anything at all. But the lack of clear and significant verifiable evidence makes it more of a belief than something we know for certain. And, more to the point, the emotional reaction I have to it being questioned makes it decidedly more of a faith to me, specifically.

Following this belief, this path of action, gives me an illusion of control over my condition, which does wonders for my ability to manage day-to-day without obsessing over my eventual demise. Even with the most outrageous naturopathic claims, I can see their value from a ritualistic perspective. Taking time each day for some self-care riding on speculation that it will have some curative effect can be understood as working in the same way daily meditation can help.

And there's something to anecdotal evidence, as well. Sometimes people in narrowly defined professions or trades have a sense of what's going on at a glance even if they can't articulate or prove the reasoning behind it. When I asked my occupational therapist, who specializes in lymphedema at the local hospital, if I should call her directly if my arm starts to swell up dramatically, and she said to me, laughing, "Marie, that's never going to happen to you," it dramatically reduced my anxiety level. She has absolutely no statistical reason to believe her own claim, but she sees people all the time, and I don't fit they typical profile of someone who runs into trouble with this. And, even though there's a little place in the back of my head that knows she can't know that, I replay that conversation whenever my arm feels tight or heavy or weird. And then I also take every other precaution, most of which aren't well substantiated (because there's very little research on lymphedema despite it being a common side-effect of breast cancer treatment).

But, with something like cancer, where there's nothing we can definitively do to prevent it for sure, there are steps that might help, or at the very least, they might help us believe that we can prolong our lives just that much more. Of course we're going to die of something, but maybe not this and maybe not now. So when people challenge those little things I do that keep me afloat, it bothers me not because they're wrong, necessarily, but because they're wiping out the illusions necessary to distract me from my mortality.

We're a bit ambivalent about rituals. We accept them when sports players perform little superstitious behaviours before a game, but we also see it as a problem when someone performs a litany of little rituals to get out the door every day. There's a continuum from total skeptics on one side through those who practice occasional rites (regular ablutions or meditations) and on to those we consider in need of help either for their ignorance around the scientific method or for their OCD. And we extol the value of the scientific method. But can't it be both? Science can only take us so far in our understanding of our bodies. We have to fill in the rest ourselves with a bit of guesswork or just hope for the best or take that qualitative leap. So long as it's not costly or harmful, and so long as it's recognized as ritual or as grounded more in faith than science, then whatever gets you through the night! 

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