Sarcoma awareness month: help is more than medical care

As a third year medical student I was assigned to take care of Michael, a 5-year-old boy with a rare tumor in his brain stem. Michael wasn’t doing well. He and his family had already been through one round of chemotherapy and radiation, and celebrated when the cancer disappeared. Months later, when the cancer returned, their emotions were more complex – fear and anger certainly, but also confusion and helplessness. They came to their appointments, they did the treatment, and they got their scans. They did everything they were told without question, but persistence and punctuality didn’t matter. The tumor was winning, and it was going to win, despite how willing both the family and the doctors were to do anything possible for Michael.

I met Michael when he was admitted to the hospital after his tumor had grown, even though he had recently been given a new chemotherapy drug. He was having trouble breathing, and there were no more realistic options that would reverse the inevitable. There was not much that I could do as a medical student, but really there was not much anyone could do.

In medical school interviews, a common response to “why do you want to be a doctor?” is “to help people.” Granted, it is not the most original answer, but it is simple, true, pure, and universal. We are here because we want to help; we train long and hard so we have the ability to help.

So what could I do with Michael when there was nothing to “do?” I could be around. I could be present. I could just be there. I could make sure that, for all the things that were happening around, all the big, real, life-altering events that were drawing closer like a rising flood, Michael and his family wouldn’t have to look for a glass of water, or a sandwich, or some quiet time. I could do that. Looking back, I believe it was that day that I became a cancer doctor, and that child taught me that we do not treat cancer, we treat people.

July is Sarcoma Awareness Month. It sounds silly, really, to all of us who are affected by sarcoma as patients, family, friends, doctors, or nurses. Sarcoma doesn’t just get a month, sarcoma gets our whole lives. It gets our weekdays, weekends, days, and nights. It greets us when we wake and whispers to us when we sleep. For those living with sarcoma it is scary, confusing, unwelcome, and unfair. For me, it is personal as well. Sarcoma has a face—in fact, many faces. Faces that have names, birthdays, handshakes, secrets, laughter, tears, victories, and disappointments.

An official month does not change the omnipresence of sarcoma for us, but it does allow for a defined time of personal reflection and national recognition. Sarcoma is rare, an “orphan” disease, and any efforts to encourage awareness and research into new clinical trials, surgical techniques, and survivorship care are welcome. For as good as we are at treating sarcoma, we can certainly be better.

Now, let’s get to work.