Last Wednesday we had a follow-up appointment with my surgeon. He was pleased with my progress. The big incision and the chest tube incisions all looked good, and the super glue that they use in place of external sutures is flaking off nicely leaving pink scar tissue behind. There was more "junk" (fluid, clotted blood, tumor, or whatever) in my right chest cavity than he had hoped to see, but that does not seem to be a big problem, because he doesn't want to see me again for three months. The junk means that the right lung is not inflating completely, but at least it is working to some degree. It turns out that the sequence of steps in the lung-removal surgery called for cutting the nerve to the diaphragm before they learned they had to change course and remove only the pleura. Consequently, my right diaphragm is not working anyway, so I guess it doesn't make much difference that the right chest cavity has junk in it.
The next step is an appointment with an oncologist so I can begin chemotherapy. Unfortunately, they are currently understaffed in the oncology section, so I won't be able to see a doctor until Sep 2. However, on Monday, I plan to call M. D. Anderson and check on getting a second opinion on where to go from here. I expect both Scott & White and M. D. Anderson to propose the same treatment regimen, but I want to make sure before I begin. From what I can tell by reading articles and research online, I expect to receive two different chemotherapeutic agents--cisplatin and pemetrexed. Together they provide the most impact on the tumor of the available drugs, but they do not provide a cure and only lengthen life expectancy a little.
Predicting life expectancy for mesothelioma is complicated by the small number of cases available for analysis. If it were a more common cancer, then researchers could take into account individual differences in age, gender, general health, the extent of the spread of the cancer, and other important factors in estimating longevity, but about all my surgeon would say was that he would be surprised and pleased to see me in two years. When the famous paleontologist Steven J. Gould was diagnosed with abdominal mesothelioma in his early 40's, he immediately went to the Harvard library to research his life expectancy. He was shocked to learn that the median survival was only about eight months. However, the median does not tell the whole story, and some individuals live much longer than the median. They are said to be in the "long tail" of the life expectancy graph. Following his treatment, Gould wrote a column in Discover magazine that explained how the median can be somewhat misleading statistic. It doesn't tell is how long those who were still alive after eight months lived, and some lived much longer. I've attached a copy of Gould's article under the Other Pages heading on the right. It turn out that Gould lived 20 years after his diagnosis and died of another cancer. I don't know how long I will live, but I do know that I'm going to do whatever I can to stay in the long tail and use my time the best way I can.
At this point, there will not be much to write because much of the mystery of the disease process has been revealed and the upcoming treatment is pretty clear, so I don't expect to be writing much before the chemotherapy begins. Sarah added a counter to the blog, so I know that a number of people a day check the blog for new entries, and I appreciate that you are interested enough to check in periodically; however, don't expect to find much in the short run.
David
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