Palliative care

A weekend ago, I traveled to my parent's home to visit. Dad had been hospitalized for the first time since his diagnosis of cancer (2 years ago, now), except for a couple of short stays for blood transfusions. He had developed horrible stomatitis -- inflammation of the mucous membranes including the gums, esophagus, and likely, the stomach s well. The inflammation had gotten so severe that he could no longer talk or swallow anything. Because he was unable to take some of his other medications, he had a few other complications beyond the pain and dehydration. Stomatitis is a potential side effect of chemotherapy, but for some reason, for my father, it was far worse than one would have ever have predicted for this particular regimen. His oncologist suggested that it was a viral infection. Perhaps, but I also realize there is much that we don't understand about medicines, and our bodies response to them.

My father has aged tremendously in the past 6 months. He has done far better than would be predicted. I was feeling great that we were "beating the curve" (so to speak), until I went to ASCO this year. For non-smokers with stage III/IV lung cancer the median survival is 18 months. So we were are still beating the curve, but the question begins to surface, "is it worth it?"

I believe that "palliative" chemotherapy should be palliative. In the Merriam-Webster dictionary, the first definition for "palliate" is: to reduce the violence of (a disease); also : to ease (symptoms) without curing the underlying disease.

In the world of oncologic care, unfortunately, often the palliation comes at a significant physical cost. The toxicity of chemotherapy can be much greater than the toxicity of the disease. My father certainly experienced that with this last round of chemotherapy. Is it time to stop? That is a very hard concept for most cancer patients until they become extremely weak, and even then, the families frequently do not want to stop. My parents are not ready to cross that bridge, yet. I think the time is coming, soon.

I have seen time and time again that people can live longer without aggressive intervention than they do with aggressive intervention. The body becomes weak from the ravages of chemotherapy as well as the underlying cancer. At this stage, our treatments for cancer are poison. Even the majority of the "targeted" therapies have significant downsides. We try to kill rapidly growing cells without creating too much toxicity for the "normal" cells, but that's why chemotherapy has so many side effects. I often try to explain to people that they need to have an energy reserve to take chemotherapy, so that they have the energy to recover from the toxicity of the chemotherapy. People often cling to the idea that the next regimen will be The Cure. Our media showcases the extreme. This frequently participates in the drive that people use to pursue treatment far longer than they should. If Joe Smith had a miracle when he was on his death bed, why not me? There is no answer to that question. I have to believe, that when life does not go in the direction that we would hope, that there is a plan beyond us. So many people view the decision to move to symptom targeted treatment, i.e. treatment of pain, dyspnea, etc, but not treatment of the underlying malignancy as giving up. I don't think so. Living with cancer is never giving up.

In the end, there is one truth: Cancer Sucks.

On the good side: while visiting my parents, I met a few angels. One was a neighbor, that my mother met while dog walking. I totally impressed by her generosity. She showed up at the door having been to the farmer's market with a collection of fresh vegetables. Later in the day, she called. She was at the grocery store and wanted to know if my mother needed anything. I would have been happy to have made that grocery store run, but it was nice to be able to stay at home with my parents. When someone is sick, these simple acts can be huge. Later, a member of the my parent's church called. She was asking about my father, how much he was eating. In the end, she volunteered to bring over a custard -- perfect for someone whose mouth was not tolerating a whole lot.

Hug your hounds, and hug your humans. Think about the neighbors. Simple things can mean a whole lot.