When people ask me about my childhood, I have to tell them the truth - it was so, so good. Her name was Lake Michigan, and she never let me go a summer without a sunburn, a duct tape raft and weeks upon weeks of unadulterated daydreaming.
But that's the good part of living in a cancer cluster. The bad is that it can be very unsettling. You could make an interesting study on the effects that this had on me and my schoolmates, as the dread settled into us over the years. I remember when I was first learning to drive, I would warily head over to the church parking lots, praying I wouldn't see another cancer car wash when I got there. This is the kind of dread that can even dampen a sixteen year olds joy at getting to drive her dad's Mazda for the first time. The stick shift! And it only gets heavier with each passing year.
But I think my classmates and I agreed that all we could do was Relay for Life and accept it. Even the national news anchors were talking about breast cancer like everyone got it. You would just pray it wouldn't happen to your mom...or your neighbor...or your teachers...and that was it.
It wasn't until my senior year of high school that anyone said differently. We were studying statistics a little, when out of the blue Mr. F began listing the organizations that had visited our suburb to try and identity the cause of our cancer cluster, and what kinds of analyses they used.
"Wait, what?" someone cut in, and it might have even been me. It was first hour, still dark outside, and Mr. F wasn't used to interruptions, but I remember starting at him, unable to formulate a thought other than what?
That was the day we learned that certain zip codes - our zip codes - have exhibited what the CDC calls "a greater-than-expected number of cancer cases that occurs within a group of people in a geographic area over a period of time". Specially breast cancer. Specifically Rachel's mom, Li's mom, Sam's mom. Of course we all lived in that constant dread, but no one could remember Rachel's mom talking about consuming sport fish contaminated with pollutants such as PCBs, DDT, and PBDEs before she died.
Suddenly I was raging mad at my summer playmate, at my stupid, corrupted Lake Michigan. I hated these stupid pollutants and the stupid fish and, really, weren't our cells stronger than that anyway? I was so struck but what I had learned, and so betrayed, that I avoided the lake on my way home, which isn't easy to do in a city which orients itself by north, south, lake, and west.
That evening I found myself googling "cancer clusters in Wisconsin". There were no relevant search results on the first page, so I took deeps breaths and ate dinner and speculated that Mr. F was just too much of an oddball for our high school. This was some kind of conspiracy theory that he had bought into, because he was stupid.
And I dismissed it.
Just like that.
One year later I was sobbing on the floor of the dorm shower because I found a lump in my right breast. I didn't even know where my college clinic was but my mom was already on I-94 by the time I got out of bed, stiff and bleary-eyed from a sleepless night, and trying to go to my Tuesday classes.
This all happened to me so recently that I can hardly write about it, but I'm not sure it will get any easier. That dread that I talked about before? I thought I was suffocating. At the ultrasound, they said I was too young for breast cancer, but then they said the mass was solid and not fluid filled and that I needed a core needle biopsy. I read the breast cancer pamphlet they gave me, but in my mind I was replaying the past summer over and over again. I thought of toxins creeping through my cells layer by layer while my high school friends and I knocked our pop cans together on top of the raft and promised to never forget each other.
I was half-crying and half-throwing together stuff to meet mom at the hotel when I found a James Rhio O'Connor book shoved against the back wall. I vaguely remembered getting it to help with a scholarship but I had quickly lost interest. As far as I could tell it was about some old guy and it was titled "They Said Months, I Chose Years: A Mesothelioma Survivor's Story" (survivingmesothelioma.com). At that point asbestos-related cancers were the furthest thing on my mind, but it was the only health book in my dorm that wasn't about eating disorders, the flu, birth control, or other college things, so I gingerly cracked it open.
Page 2 clearly stated that while waiting for his own diagnosis, Mr. O'Connor "...went fishing and flew radio controlled airplanes, two of [his] favorite pasttimes." And I have to be honest, when I saw the word fish I think I forgot how to breathe. Thinking the book was some kind of novel, I immediately flipped to the end, just to make sure it wasn't the sport fishing that made him sick. And suddenly I was reading about some alternative medicines, and trace minerals, and Reishi mushrooms and lycopene and even the "caveats" he included about how conventional medicines did have worth and everyone needed to find their own path.
And that's when I realized I had been doing everything wrong.
I'm not talking about the dietary supplements and things like that. That's someone else's story tell.
But look. Just look at the sheer amount of knowledge that Mr. O'Connor crammed in the lines of every word in his story. He took case studies, and advice from professionals, and personal experience, and he used that compilation to conquer, to live years beyond what his doctors expected. And when he asks the reader to "find their own path" he is, I think, not advising a headfirst dive in alternative medicines, but an encouragement to research one's way to the best treatment, to health.
How could I have lived so many year of my life in constant dread, letting cancer cluster theory weigh heavily upon me even though I knew practically nothing about it? I immediately went back to do more research, but I found only a sprinkling of articles, a third of a radio program, and a demand that I pay a significant sum of money in order to view University of Madison's findings on the issue. The information I did find was minimal, contradictory, and, because of that, even more terrifying. How could we let this happen?
And I know I am not the only one who has been left in the dark. Think of all the people who would benefit by knowing more about these cancers, from origins to treatments to remission. We have not only the capability, but the responsibility, to provide answers. We can start with urging hospitals and legislators should be to be transparent about alternative therapies, demanding online databases that are more more easily accessible, and aiding cancer organizations in reaching a wide audience.
But above all, we need to have the same drive as James Rhio O'Connor to accumulate and utilize a breadth of knowledge. Knowledge is power, and we will need every single scrap of it if we are to see a cure for cancer in our lifetimes.
I'm somewhat ashamed that it took a personal cancer scare (by the way, my tumor was benign!) for me to recognize just how critical independent investigation can be, and I admire all the people who can recognize this without that kind of prompting. But I tell my story - all of it, even the selfish and stupid parts - in the hopes that someone would read this and think. That they would finally recognize that they have been carrying around this burden of dread, of ignorance, and set it down only to realize how much more they have to learn. It is a struggle to realize our limits are starting us in the face, but it's only once we identity them that we can push forward. We will be so, so, tired, but I think it will be worth it.
Because at the end of the day, I only want to be able to watch the sunrise over Lake Michigan and not be afraid of what it could be hiding!
I suspect that there is a healthy, beautiful world out there, but we must be the ones to discover it - question it, research it, teachers others about it, just as James Rhio O'Connor did - in order to truly live in it.