Sloppy Joes

Twenty years ago my boarding school cafeteria served Sloppy Joes for lunch. I don’t mean this in the vague sense with which we look back at our youth – how mothers always seemed to make cookies, fathers always seemed to make pancakes, or grandmothers drank gin and tonic. The memory is more specific than that. On October 7, 1986, Cate School served Sloppy Joes. This, I am certain.

It was a gorgeous sunny day with the sky the color of blue that parents use for their infant boys. Except for summer fog the weather in Santa Barbara has a warmth that feels like a hug under the coziness of a wool blanket.

I remember that sun and those Sloppy Joes.

But this is where it starts to blur. I must have been coming from some class – maybe Pre Calc or AP Biology when I saw my father at school. He had been there a couple of weeks earlier for a board meeting, and I was surprised to see him. He looked pale. I don’t know if he had slept in three days.

My youngest brother, Edward, had been on an eighth grade class trip to Yosemite the week before. Normally quite enthusiastic, he was sluggish on the hikes. My family thought he was sandbagging a little, but a fellow parent who was a doctor recommended that he checked out the red spots on his legs. Those spots were what sent my father on a flight down to Santa Barbara. Those spots changed everything.

My father pulled me out of the lunch line to the small senior lawn underneath that warm Santa Barbara sun. Still shocked, he managed to get the words out. “Edward has leukemia.”

And now the rest blurs as if paint thinner was poured on the canvas of my memories. There was the first trip up where I saw my brother hooked on a dialysis machine. The chemotherapy had worked so well that it killed every cancer cell, but his kidneys couldn’t keep up with the dead material and went into renal failure. He screamed about the catheter.

There was the second trip up when I went to the hospital and I couldn’t recognize my brother. The cortisone made his cheeks puff out to chipmunk levels and the chemo had ruined his hair.

There was the helplessness of being away an unable to do anything, and then when I returned home there was the awkwardness of trying to blend into my family’s rhythms. They had their rotations down about who went to the hospital, who went to the pharmacy, and who helped organize the donation of blood. The best I could do was to be invisible. My parents yelled as me when I instinctively flinched when my brother puked on me. I was supposed to just sit there and take it. They had already got to that point and had little sympathy for anyone who was away and hadn’t been through their daily grind. Suffering at a distance was only mental anguish; the real hardship was the physical part.

The uncertainty got to us all. The language of medicine is one of probabilities. You hear about 70% chances or 20% effectiveness. You start to follow the platelets and neutrophils counts you get from his blood work harder than any baseball box score. You ask, “What does it mean that the count is low? Is that normal?” But normal was a long time ago. Those days before the red spots seem distant. We have a family picture on a tennis court at my grandparents’ place of all of us take the summer before, the last photograph of normalness. We wouldn’t take another family portrait for years.

There were two different protocols my brother could go on, and his wonderful doctor, Kate Mattay (younger then than I am now), ran a model to figure out which one to use. My brother called it the Big Spin.

We joked about things like that. We kidded that he was the only one taking steroids at the junior varsity soccer game. We played Nintendo. We ate the food my parents friends gave us – the cookies and the chocolate thoughtfully given. Edward loved Marina Subs on Steiner Street to the point that we wondered whether the sandwiches would be written up in a medical journal.

We are a family long on neither hugs nor religion, and so it was our wit that carried us through. Sometimes we cried.

That started twenty years ago, and there was no family celebration this past week. During a lunch at Chili Up in the Crocker Galleria, my father; my other brother, George; and I mentioned that it had been twenty years, and that was it. Afterwards I realized how much chili can look like Sloppy Joes.

This is my eighth year of doing Team in Training, and while I have enjoyed the exercise and the friends I have made, it is that feeling of not being able to help back in boarding school that drives me to return.

I know that I am not alone. Each week we have heard several dedications made about friends and love ones. The fabric of suffering looms large over us all, and I just wanted to say thanks to each of you for making a difference. You are fending off of against that void of helplessness. It is a great and noble thing.

My family is not celebrating this day. Dark things need only to be briefly acknowledged.

Instead we are going to get together the day before the marathon to cheer Edward’s daughter’s first birthday. She arrived in a better world than her father (now a doctor specializing in clinical trials for cancer medicine), and we will work hard to make it an even better one for her children. Thanks for helping this cause.