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What I really wish I had said out loud to all of you on Saturday night and what I have felt in my heart since Austin’s first diagnosis with cancer, five years ago yesterday:
On July 30, 2007, our near-perfect world was flipped on its head with the discovery of five tumors on the kidneys of our ten-month-old Austin. There are so many analogies we’ve used to describe our long and complicated journey with pediatric cancer; the first was that we felt as if we’d been plunged into a foreign land, complete with its own language and customs, its own definitions of “normal” and “okay,” its own hierarchy of authority. A world that we never intended to visit and a world from which we had no clear way out. We’ve also used the battle analogy, a common one for cancer patients, best described here in Fighting Words.
But my favorite and the one most fitting to my life is the marathon analogy. Mark and I, and Braedan and Austin, were forced to run a marathon for which we had not trained. In fact, we had no intention of running anything at all until the very moment we found ourselves standing at the starting line. And this was no ordinary marathon; this one followed no accepted and enforced rules. The course was changed on us numerous times — we’d come around a corner, usually after a particularly grueling hill, and we’d expect to see a finish line or at least a halfway mark, but nooooo, it had all been moved. Some evil race organizer had switched the mile markers and moved the finish line, over and over again. We never knew when to conserve energy or when to kick it in high gear. We never knew how much more we’d have to take and how horrible it would be.
Every time I’ve run a marathon, I’ve put my name on my shirt. This is a very strategic and effective move: I want people to cheer for me. No, more than that, I need people to cheer for me. When my legs get tired and I wonder how on earth I’ll be able to run one more step, let alone nine more miles, I need to hear some stranger on the sidelines call out my name, “Go Krissy! You can do it, Krissy!” And I do. That one cheer makes me pick up my pace, I hold my head higher and I keep on keeping on.
I put Austin’s cancer on my shirt. Every day, on the Carepage and then the blog, I wore it emblazoned across my chest, for all the world to see: this is what’s happening, this is what we fear, this is what we need, this is what we hope. I did it not because I wanted you all to cheer for us, but because I needed you to. I needed you to know what we were going through each step of the way so you could go along with us. And go along, you did. You cheered wildly when things were good, you pushed us along when things were rough. You held us up when we thought we’d fall over, you helped us choose our way when the course pointed in two completely different but equally terrifying directions. You even offered to run parts for us. You said, “Here, rest, just for a moment, just for a mile. Let me hold this burden for you.” The rules don’t allow that sort of thing, in running or in cancer, so instead you ran along beside us. And when we couldn’t possibly fathom taking one more step, you told us we could, and we did. You told us we were strong and that made us strong. You told us we would make it and look, . . . we made it. We crossed the finish line, with arms held high in victory. This race is finally, finally over. There may be another race in our future, but we hope to be better prepared for that one. And no matter what, we know you’ll be there cheering yet again.
We made it. And you were there every step of the way. And for that, we thank you.
I’m taking a much-needed break after several hours of hard digging in my yard, so I figured I’d tell you about the conversation I had with the boys last night. The three of us were lying in bed in the dark, having just finished our bedtime stories (the very best time for talking), when Austin asked, “Why do boys and girls get cancer?”
He’s never asked a question like this before, nothing even close. If he talks about cancer at all, it’s usually to ask about specifics: “When are we going to the hospital?” “Who will be our nurse?” “How many nights are we sleeping over?” For the most part, I think he just assumes cancer is a regular part of everyone’s life and is no more likely to wonder why it exists than he is wonder why we eat food each day.
So I saw this as a great opportunity and launched into my weeds-in-the-garden analogy. I didn’t make this one up, in fact I think Kelly Corrigan used it with her daughters in The Middle Place, but I have managed to add some extra layers to it. This was how I explained cancer to Braedan’s class a few months ago when I visited at his request. (That afternoon quickly morphed into a discussion of gardening, with twenty eager little hands waving in the air to tell me about their experiences with weeds.)
Cancer is like a weed growing in your body, I explained to Austin. And how do you get a weed out of your garden? Well, you can dig it out, which is like surgery: doctors literally cut the cancer out of your body. (“With scissors?”) But you have to be careful when you dig a weed out of your garden not to take too much of the good stuff along with it and not to damage the roots of the other “good” plants that you want to grow there. Same thing in your body: sometimes when you cut the cancer out, you end up removing or hurting some other part of your body that you actually need.
So what’s the other way to get weeds out of your garden? You can spray them with chemicals (this was really when the kindergarteners really got excited). But the chemicals can hurt the other plants nearby the weed you’re spraying. Just like chemo: a chemical that kills the bad stuff but kills the good stuff too (hair, of course, is the easiest example of “good stuff” for children).
So what happens if you just leave the weed there, let it do its thing? It spreads, winding its way through your garden, twisting and choking other healthy plants, potentially destroying everything in its path. Same, duh, with cancer.
One of Braedan’s classmates earnestly told me a story of how he and his grandmother worked really hard to dig the weeds out of her garden and they thought they got them all and then a few days later they came back. Ah ha, exactly! (A new dimension added to my analogy.) That’s just like with Austin’s cancer. We dug it out and sprayed it with nasty chemicals and thought we got it all and then weeks, months, years later, it reappeared!
I was all excited to share these bits of wisdom with Austin, but he interrupted me partway through and said, “Wait, but Mom, why do soccer players play baseball?” Braedan and I stared at each other with raised eyebrows and then everyone devolved into a fit of giggles and thus ended my teachable moment.
Back to the garden . . .