I first met Dr. Charles Simone a few years ago in a basement bar. Back then, he was introduced to me as “Chuck.” Actually, my mother gestured toward him and asked emphatically, “Do you know Chuck?” The stress on his name made me feel like I should know him, but I didn’t.
He was friendly–friendly in the internal way that makes one feel gently scrutinized. I got the impression that he cared deeply about my answers to his questions, which were all of the low-impact small talky variety. That didn’t matter so much. The most striking thing about him was how he seemed to remember things and people. He was calm and careworn; the faint baritone of his voice barely made it through the hum of the party. With his deep old eyes, and his childlike grin, he cast the figure of an immediately post-monster Victor Frankenstein: wise, curious, and probably too young to see some of the things he has seen.
I got the same image a few years later when I got the chance to film this interview with him. He came in tentatively, clutching his white lab coat. I told him he didn’t have to wear it unless he really wanted to.
Chuck is a doctor saddled with responsibilities. As an assistant professor of radiation oncology, clinical specialist in thoracic malignancies, pioneer in photodynamic therapy (treating cancer with lasers,) and a keen student of pain management and palliative care, I wondered if anything he does is easy for him.
“The easiest thing is just coming every day,” he said.
That early impression–that Chuck has a piece of him fueled by concern for others–was accurate. To him, the one part of his job that comes without a downside is that he gets to do it every single day. “It really fuels me,” he said.
His attentive attitude makes him keen to issues in cancer care that fall through the cracks. Pain management is first on that list. Chuck told me, in his devastating monotone, “the majority of cancer patients are still under-treated from a pain standpoint.”
So what does it mean to be “under-treated?” Apparently, there are some major communication issues between doctors and patients that need to be addressed. It could be that doctors are not as observant as they should be because no one is teaching them how to assess pain in medical school. It could be that patients are not speaking up because they want to deny the progression of their pain, or they want to be “stoic about their disease,” as Chuck put it to me. The solution? “Dispelling some of the myths on both the patient and physician aspects.” For example, the patient who declines to report increased pain because he believes that increased pain means advancing cancer might be totally wrong. It might be a dosing error that has nothing to do with the progress of the cancer. In that case, he needs to say something. Chuck works as hard as he can to make sure that patients feel comfortable reporting what it is they need. Only by doing that can he shed some light on the common misconceptions that mar what could be better success rates. (It is at least a little poetic that he specializes in photodynamic therapy, a treatment that kills cancer, about which there is so much confusion, with massive amounts of light, which has a semantic reputation for dispelling confusion. See the accompanying video of him talking about how it works.)
There are the good days, which fuel him, and the tough days, which add contrast. “At times,” he told me, “there are unfortunate outcomes.” We all know this about doctors–that they have to see a lot of sadness. It is especially the case for doctors who treat cancer with groundbreaking therapies. It has to be disappointing to see the best, most comprehensive science falter when it is pitted against the naturally mutating cell. We all get that. But it is never brought into a quiet office with us, as it was when I talked to Chuck. This time there was no raucous background noise to cut the melancholy in his voice. We weren’t in a bar anymore, as two people extracted from our daily selves. I had entered Chuck’s world, where sometimes everything isn’t enough, but “with every sort of defeat, there are a lot of triumphs too.” The seconds on my dinky flip cam ticked normally, defiantly.
There are also, as I had morbidly guessed, the really tough days. Some patients don’t report their pain; others tell him they can’t take it anymore. Chuck often encourages patients to stay the path toward remission despite the fact that the treatments can be hell. But he has to be diplomatic about it; as soon as somebody says, “No more, Dr. Simone,” all he can do is make sure they know what their options are. “Sometimes they decide enough is enough…I 100% respect any patient who says that,” he told me. The sigh he gave before he answered me brought ghosts to the whites of his eyes. It is hard to believe he doesn’t wish that he could have made those patients hold on a little longer. (I guess that’s why I’m not a doctor.)
Chuck has a wish–that we, the public could know that there are plenty of reasons to have hope in the fight against cancer. Suspecting, guessing, wondering–such verbs are not enough for him. Not for a man who depends on his job for fuel. It is easy to have faith when Chuck tells you there’s faith. (I guess that’s why he’s a doctor.)