from Siddhartha Mukherjee's The Emperor of All Maladies: A Biography of Cancer . . .
"Cancer at the fin de siecle," as the oncologist Harold Burstein described it, "resides at the interface between society and science." It poses not one but two challenges. The first, the "biological challenge" of cancer, involves "harnessing the fantastic rise in scientific knowledge . . . to conquer this ancient and terrible illness." But the second, the "social challenge," is just as acute: it involves forcing ourselves to confront our customs, rituals, and behaviors. These, unfortunately, are not customs or behaviors that lie at the peripheries of our society or selves, but ones that lie at their definitional cores: what we eat and drink, what we produce and exude into our environments, when we choose to reproduce, and how we age.
This passage is toward the end of the book - an amazing book, one I'd highly recommend and since it won the Pulitzer last year, I'm apparently not alone in my assessment of its greatness. After chapter upon chapter of the history of a disease whose very name is terror, culminating in the unveiling of its secrets - the 13 pathways, the key to all cancers - one would be inclined to agree with Mukherjee on this one. Like the very organism from which it stems, cancer is designed to adapt, to respond to insults, to find a way to keep on existing. So every treatment that hopes to kill cancer may just succeed in making it stronger. More virulent.
"What does not kill me makes me stronger."
Who hasn't heard that one? Usually in the context of a challenge, right? Maybe in the face of cancer or some other life-threatening disease? And in some ways it's true. Not that the body is stronger - cancer treatments kill more than just cancer - but the mind surely is. So we hunker down, follow orders, do what we gotta. And all the while, cancer is doing the same thing.
It is, after all, us.
I think it was Harold Varmus (Nobel prize winner, current head of the National Cancer Institute) who said that cancer might have its own stem cells, or some such. That means that it possesses the ability to completely regenerate itself, even after all outward signs of its own life cease to exist - it's a pretty hellacious genetic malfunction. If you're a parent who's lived to hear the words "no evidence of disease" or NED status come out of your child's oncologist's mouth only to see him relapse and die a few short years later, then this will resonate with you. You've lived through experiencing friends and family wait for you to hear the magic words that will transport you back to their idea of normal. While some people want to think cancer is a blip on the screen, a bug in the system, the reality is that it's more likely a part of the system. A part that will forever exist in the system. What's left for us is to redefine its role in the system. And that's the new normal, if you're a cancer parent. It doesn't go away just because someone says "cured."
Ever hear the saying "lightning never strikes twice?" The reality is that lightning does hit the same spots over and over. In my hometown, there was a big tree by the post office that got hit - more than once. Cell towers - repeat victims. It's a silly saying and it's most certainly false. Something about the location just draws lightning. Same with tornadoes. Where I grew up, little storms popped up all the time in the same spots. Not the headline-grabbing F5s, just little ones. But again, something in the lay of the land shared an affinity for drawing funnel clouds into its scape. Old-timers know this.
But science hates old-timers as much as it despises old wives' tales.
Science has lulled us into a sense of randomness that really doesn't exist in nature. Because nature is, at its most basic, opportunistic. It doesn't bang on locked doors; it finds a crack, a window, and it goes like gangbusters once it's in. Science would ask you to look to the statistics, but statistics are revered for their random, unbiased-ness. Nature doesn't work like that. Statistics require that you treat everything the same. Nature zeroes in on the differences.
How about this one: your child has cancer, so now his chances of getting it as an adult are slim to none. (Huh?) So not true. While your child may never have cancer as an adult, one could argue that his chances are not only NOT less but are in fact GREATER. That is, if you're a proponent of the nature point of view. Statistically speaking, maybe it would seem so.
Of course, if you're a child who's had chemo, odds are you've taken the chemo drug that's linked to leukemia. So how does that scientifically-ascertained link between certain chemo drugs and secondary cancers play into overall cancer risk?
Exactly. The overall risk is meaningless once you've had cancer. You're no longer the average person, so those statistics don't apply to you.
Nature in its most base and ugly form took a shine to you.
Kris Carr was 31 when she got her cancer "wake-up call:" epithelioid hemangioendothelioma had covered her liver, as well as her lungs, with nearly two dozen tumors. There was no treatment. So she took charge of her life and her health, and eight years later she shows no signs of slowing down. But her cancer, already considered a slow-growing kind, has stopped in its tracks. Now, I'm not a doctor. But I do have a cancer dictionary. If the ability to grow and spread is what makes a tumor malignant, then if it stops growing and spreading, does that make it benign? I'm not sure. However, it does make it more like a chronic disease that you live with, doesn't it? Sorta like heart disease, or diabetes. We don't cure those, either. We make adjustments. Usually of the dietary kind.
In the case of children, they're not able to make those adjustments on their own. But they will adjust. Kids do eat veggies. What adjustments can we make? Can we make do with a little less "product" in our lives? Pine Sol smells clean, sure, but who are you trying to impress? Look at the faces of the people you love most. They live in that home. Odds are they are ambivalent on the Pine Sol thing. Odds are it's your ego. Here's a newsflash: clean doesn't have a smell. Clean smells like nothin'. You've been sold a line, and your wallet (and possibly your family's health) has suffered the consequences. It's likely that your children's bodies have expended some significant energy in expelling those wonderful-smelling toxins you've put in the home to make it seem cleaner. Maybe there was no long-term impact on their health, but you can bet that their liver and kidneys had their work cut out for them. Think about what you're doing, and why. It's really not worth it.
So why did I bring up Kris Carr? She made a documentary called "Crazy Sexy Cancer." It's really good. Facing incurable cancer, she took her health into her own hands and she is surviving beautifully. Sure, it's got something to do with the kind of cancer that she has. But we are a nation of people who want to do what we want when we wanna so doctor give me a pill so I can put this behind me, when what we need to be is a nation of people who are . . . well, less ignorant. Less accidental. Less helpless. Less victim-of-circumstance. I am not implying that everyone who gets cancer is unhealthy, but I am saying that one who has cancer cannot afford to be lax. We want a pill, we want a cure, and we don't wanna make no stinkin' changes.
What if we made these changes before a health crisis focused our priorities? What if our bodies were fortified and ready to do what God or the universe designed us to do, which is, to survive? Feed them well, protect them from poisons, give them plenty of rest?
My daughter has scans next week. We're having scans more often because a recent one showed slight growth. Her neuroblastoma tumor is lurking in the spinal cavity, doing God knows what - we test the pee, we image the tumor, we watch. Everything appears to be fine, by all measures. But . . . what if her neuroblastoma finds a way to come roaring back to life (if it's actually dead in there at all?) This is where I usually get showered with a bunch of reassurances that are surprisingly not reassuring. See, I know enough about cancer to know that . . . no one knows. I don't live in fear. But I don't live in ignorance and denial, either.
Cancer, like every other living entity, possesses a will to survive.
Our best hope is to seal the cracks, close the windows, lock the door.
Become inhospitable.
When you hear someone say something completely ignorant like "you've gotta die from something," speak up. Pretty sure kids aren't supposed to die at all. When you hear someone deflect, with something along the lines of "it doesn't matter what you do, there's always something else," disagree. Maybe they're just trying to get you to shut up about it, but the truth is that while nothing is guaranteed, we can do better than what we're doing. Question the way we lead our lives. The beautiful new furniture that proves our exquisite taste and success is poisoning our home environment. If we are working so much that we don't have time to cook real food at home, I hope that it's not just so that we can afford more poisonous furniture . . . our culture is killing us. Don't be afraid to break with the norm. The Joneses weren't all that, anyway.
For every admonition concerning health or the environment, the response seems to be "jobs."
Would it be okay to figure out how to make do with less? As a society. Why the endless consumption that drives our need to make more? More, more, more. And our children are sick, in ever higher numbers, and plenty of scientists have shown evidence that environmental by-products of rampant consumption are causing it, and yet . . . it's business as usual. Even in the families with the sick kids.
My cancer experience brought me to my knees in every sense. Financially, I'm in the skids. I'm filing for bankruptcy as soon as I can afford to. But through years of cutting costs and reorganizing priorities, I've learned that there's quite a bit I can do without. How much do you spend every year on cleaning products? Mine consist now of standard laundry detergent and dishwasher soap, of which I use less than half of the recommended amount per usage; vinegar, baking soda, lemon, and Borax. I save a bundle and while it's not perfect - the detergents are neither eco- nor child-friendly - it's a whole lot cheaper and a whole lot healthier for my family. Make no mistake, the folks that produce detergents and solvents are feeling the changes afoot. Dawn Dishwashing liquid is promoting itself as the gentle savior of oil-spill rescued critters, rather than as its former "tough" self. That's no small thing.
What about food? Can you shop the periphery and avoid the processed-food aisles that populate the middle of the store? Can you go meatless one day a week? Can you keep a plate of raw veggies in the fridge for after school snacks and leave the junky chocolate chip bars to the next customer? Even if they're not "organic," they're still real food. The same pesticides you avoid with organically-grown produce lurk in every single serving of non-organic processed food, which also contain a plethora of bad ingredients in addition to the incidental pesticide contamination. Can you drink water instead of fakey dyed, fakey flavored beverages even if they have vitamin C? (I just saw a kid's beverage in the convenience store that contained as much sugar as a soda, with a dose of aspartame to boot, along with both FD&C red and yellow, about twelve unpronouncable ingredients, and . . . of course . . . ascorbic acid. Vitamin C. That makes it all better.) Can you plant a garden, even?
Can you tolerate grass that's not as green as your neighbor's?
Can you change your mind about what's important in your life? Can you choose to define your reality by your own values, and not someone else's? Can you live by the lyrics of a cheezy country song instead of just singing along between errands?
You can, if you choose. It's easy once you try. I am perpetually surprised by the number of people who have endured illness and death in their families yet desperately avoid making these connections, as if recognizing the truth implicates them in some way. Personally, I find blame to be very empowering: if I caused it, I can change it. If only it were that simple, of course; what's done is done. With most things, all you can do is focus on that which you can change. And that, my friends, is what cleaning up your daily habits is all about. Small trade-offs for better health. Things you can change.
We can raise money until we're blue in the faces, funding that elusive but desperately-desired cure-all. Seven kids in America will die today from cancer and while that may not sound like a lot, it is tragic to behold. Every child matters. Every sick child. But I'm on a cancer rant today. My daughter will hold her annual lemonade stand for Alex's Lemonade next weekend and we'll bundle up our earnings and send them off with a wish and a prayer . . . Lord, guide the brilliant hands and minds that will, through this small contribution and many others like it, employ the " fantastic rise in scientific knowledge . . . to conquer this ancient and terrible illness."
As for the second challenge - the "social challenge -" that one requires changes on a more fundamental level, changes that will require before all else a good, hard look at what we are doing. And a political will to change business as usual in America. The environment matters. It's our home, after all, not just a money tree. The social challenge involves forcing ourselves to confront our customs, rituals, and behaviors. These, unfortunately, are not customs or behaviors that lie at the peripheries of our society or selves, but ones that lie at their definitional cores: what we eat and drink, what we produce and exude into our environments, when we choose to reproduce, and how we age.
What can you do today?
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