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.

About being green

Our world is toxic. I am becoming convinced of that. The conveniences that we have generate an incredible amount of waste. Perhaps, I shouldn't have purchased that "green" car, and it's still gas....just gets better mileage. I think it's watching Planet Green on cable.

There is an interesting article in today's New York Times: Our Ocean of Plastic. Good gravy! Plastics from Asia and Russia are washing up on the Alaskan shores (not to mention all the plastics from the good ol' U. S. of A.). Reading this article has cured me of any desire to swim in an ocean.....but, people, we are supposed to be stewards of this world. What are we doing?

Last night, I went to local Starbuck's with one of my work colleagues. Although in Smalltown American, it looks like any Starbuck's, the clientele as a little different. In the corner, sitting in two winged back chairs, were two older gentlemen. My colleague knew the one and introduced me, "this is So-and-so (I hate to say this, I didn't catch the name), he's one of the city counsel-men so if you have any gripes, let him know." I took my opening, "Hey, I do! How about getting some organized recycling here?" I have been trying to find some place to recycle goods -- there is an organization that takes newspapers, pop bottles and card-board, but nowhere for many other recyclables, and I am tired of storing them for trips to the Big City. His response, "A lot of people have been asking about that." WRONG RESPONSE! If a lot of people having been asking about it, why aren't we looking into it? They are passing all sorts of crappy ordinances to "clean up" Smalltown America, but if we don't do something to raise awareness of how much we are polluting, and we don't do anything to cut down on our "footprint" not having fences in the front yard is just somehow missing the forest for the trees, the boat for the ocean.....you get my drift.

So, I will continue to do my little part. I am collecting my soda bottles and newspapers. I collect the magazines and glass to haul into the Big City. I am thinking about getting solar panels, but so far, I have found only one contractor in the metroplex. Still, one is better than none, and he does serve this area.

Don't get me wrong: I know that I do a lot to have too large a carbon foot print, but I am slowly trying to modify my behavior. I continue to drink Diet Coke in all of those plastic bottles, but I am weaning myself of that habit. As I see people getting cancer that just shouldn't be getting it, I am becoming more and more convinced that our world is toxic, the additives to make our food pretty are toxic, the stuff we spew into the air is toxic, the run-off in our oceans is toxic.....no, I won't be able to go all green by tomorrow or next month or next year....however, I think it is very important for all of us to try to do our part, however big or little that part may be. Hug a tree...or better yet, go plant one!

Food for thought.

Cancer is a devastating disease at so many different levels. For some reason, there is a certain pride in heart disease: the executive has his heart attack, angioplasty and is back to work within a couple of weeks bragging, but the patient with cancer often tries to hide the diagnosis. Why?

When I was first drawn to oncology (as a geek high school student), I had read a Newsweek article about oncogenes. The discovery of these genes was going to lead to a cure for cancer in the next 10 years. Well, we are now 25 years down the road. We can treat more cancers than ever before, we have extended the survival and decreased recurrence in many, but .... for far too many, the outcome is the same. Death. I found an interesting quote yesterday.

Taken from Breast Cancer Update in an interview with Larry Norton (a breast cancer specialist at Sloan Kettering in New York):

"If you add together everything that Americans spend on cancer research in this country, and I’m talking about all segments of our society — government, industry and philanthropy — it’s between $11 or $12 billion, about two thirds of the $16 billion the tobacco industry spends on advertising and one sixth of the $68 billion Americans spend on soft drinks annually. The entire National Cancer Institute budget for cooperative group trials is under $158 million. If we really want to get rid of cancer, we know what to do. We just have to do it."

Pretty sobering statistics, eh? If dumped all the money that currently goes into tobacco advertising into cancer research will we have a cure? Maybe not -- but in many disease, we are moving closer to having a chronic disease. If that conversion to a chronic disease comes with quality of life....I think that is an adequate goal. And the amount we spend on sugared carbonated water? All of a sudden the Diet Coke sitting at my desk didn't taste right.

Right now, I am feeling like we live in a very toxic world. It seems to be moving faster and fast, in part because of the computer age that has made this blog possible. On many days, things feel off balance. Part of that is the innate stress of my work, but when I read things like the finances on cancer research, I know that we are off balance.

On February 4th, George Bush presented his proposed budge for FY2009. In that budget is a mere 29.3 billion for the NIH, increased from 28.9 in 2008 (NIH funds all sorts of basic science, not just cell biology and biochemical sciences). Between 1999 and 2003 there was a doubling of the NIH fiscal budget. Given inflation and the increased cost of doing research, the current rate of increase in the NIH budget has resulted in a 13% loss in the buying power of the NIH. (As we learn more, more sophisticated techniques are required.) This means the loss of research programs, the loss of morale in labs (which is hard to maintain at baseline), and the loss of young investigators. Without supporting our basic sciences, the foundation for novel therapies for cancer and other medical conditions will be lost.

I know that there is a limited pool. I see waste all the time. What are our priorities?

I have the utmost respect for our service men fighting the war, police officers, fire men (the path of my training has shown me that those people are exposed to horrors that most of us never consider or appreciate). I believe many people question the war in Iraq. The direct cost of that war is 845 BILLION dollars. The direct costs plus indirect costs (inflation, increased cost of oil, etc) may be as high as 3 trillion dollars (See link). Just think the industry that might have been generated had half of that money been diverted to research and education (without education, we will have no one to do research).

OK. I'm off my soap box. For now.