Here's the Dirt: Cancer Still Carries a Stigma

The number one question lung cancer patients get asked: Did you smoke?

The answer most want to give is: What does it matter?

To scientists, epidemiologists, policymakers, statisticians, journalists and storytellers, the cause/effect is very important. It leads to further study, policy decisions, stories and good infographics. To cancer patients and their families, it typically leads to guilt and pain. 

I ran headlong into this issue when my work blog posted an infographic trying to raise awareness about the benefits of quitting smoking. Well-intentioned as it was, it fanned the flames among lung cancer patients, many of them non-smokers who feel that they have been lumped into a group of patients with a target on their back -- a group that is often tossed the compassionate comment, "well, that's what you get from smoking." Save for a minute the ridiculousness of that comment, which avoids thorny issues like addiction and our evolving knowledge base, the persistent linkage between smoking and lung cancer helps perpetuate the myth that to get rid of lung cancer all we need to do is get people to quit smoking.

That is far from the truth. 

We need, as lung cancer advocates will tell you, more research funding and better advanced screening. While I would be glad if the last cigarette in the world were smoked yesterday, that wouldn't erase lung cancer today -- nor would it erase lung 80 years from today. (Here's what we ended up posting instead of the infographic.) 

I don't have lung cancer. I have follicular lymphoma. But I felt in my own way, the stigma that lung cancer patients feel. There's a two-fold guilt that surrounds cancer patients. Unless you've led a saintly life, you immediately start questioning past decisions from physical, theological and philosophical perspectives. 

I've led a physically active life since, well, forever.  But I often wondered: Are the tumors growing in me the result of some carcinogenic seed I planted inside me 20 or 30 years ago? Did I set off the molecular chain reaction that got me to where I am today? Is my cancer some kind of universal moral retribution for my transgressions? A karmic kickback? 

It's little  wonder many cancer patients naturally try to live better after their diagnosis. On one hand, it's a shot at control in a sea of chaos -- an attempt to do something that you can to battle the disease. It can also be a response to the guilt -- a chance to make a deposit into the karma bank.

But there's another subtler form of guilt at play here, and it's what I call the dirt of cancer. See, for all the enlightenment we may have experienced as a society -- most people no longer refer to cancer as the C word -- cancer casts a shadow of dirt, grime and disease on an otherwise healthy person, and in doing so it can make a healthy person feel not just sick, but unwholesome. Forget for a minute the actual physical ailments that cancer, and of course, the treatment can cause, just knowing you have cancer in you makes you feel diseased. 

And the last thing any diseased person wants, I would venture to guess, is to be told what they did wrong to get this way. 

--michael

Perspective

Thinking Out Loud's been a bit quiet this last week. It's not as if there wasn't much to think about, or enough time to write about them -- I only worked Wednesday and Thursday this week but I was a weird emotional distance from the Boston Marathon Bombing. Fortunately, I wasn't close enough to have the traumatic emotional response that many have; I was three years removed from that. Nor was I far enough away to be completely insulated from what transpired -- I don't think anybody was.

Instead in the initial hours and days after the bombing, I seemed to occupy an emotional middle ground. I vividly remember 9/11 and how I felt then and this event was closer to me than that; yet I still felt slightly detached from the rawness that many people felt.

I was talking (and emailing) with a couple of card carrying members of the Cancer Club about this, and the sense of guilt that accompanied that partial detachment. It's not that any of us viewed the events with apathy or anything close to it, but the same cancer cocoon that protects us from too much negative information coming in, perhaps prevents too much emotion from spilling out, even in the most traumatic non-cancer events. It's as if there are two worlds -- our cancer world and the other world, and that other world is sometimes viewed through a haze from our world looking out.

On Saturday, I thought it right
 to wear my Dana-Farber
Marathon Challenge gear from
2010.  Not only Boston Strong
but also Dana-Farber Strong.

And then I went for a long run today.

I've been running a lot this week, in fact -- today was my 7th run in 9 days and the first time I've tackled my favorite 6-mile loop in probably 3 years. As I settled into my pace after the first mile, my mind settled down too, and I thought of how many of the victims of the attack were runners (either marathoners or casual runners), and how many months, or years, it might be before they can throw on a pair of running shoes and go out for a run on a beautiful spring day.

And I thought about an acquaintance of mine who contracted Lyme Disease and can no longer work.

And I thought of all the cancer patients who were recovering from surgery, or undergoing chemo, or stem cell transplants, or radiation, or all of the above.

A bit of the scenery on my favorite in-town run.
Photo by Mary Motte, from the Barrington
Virtual Art Gallery

Cancer comes with an ample amount of guilt, served up in many flavors. From guilt that what you did somehow caused your cancer to karmic guilt that wonders what you did to amass such dark karma, to guilt that your cancer is "easy" compared to other cancer patients to the more predictable guilt over being a burden to friends and families.

It's one of the perverse ironies about the mind that at a time when we should be most open to receiving, we often feel guilty about doing just that.

But guilt comes not only in flavors, but also in depths. Sometimes you can peel away those layers of guilt, and when you do, you're left at your emotional core...  with perspective.

--Michael

p.s. Adding a link about my fellow DFMC runners, http://www.necn.com/04/18/13/Runners-gather-in-Bostons-Back-Bay/landing.html?blockID=838291