It has been a while since I reported on the status of my health. I don't like to draw attention to my medical issues, but appreciate the concern and requests for information.
It has now been 9 months since I finished my course of radiation, and I have been re-evaluated 3 times. Three months after the radiation the tumors showed some shrinkage, which indicated that the radiation was effective, but also that the tumors were fast-growing (the cells die when they try to divide, so a high death rate indicates the tumor cells divide rapidly). The NIH team recommended that I try a course of chemotherapy that is quite mild. Temodar gets across the blood-brain barrier and is often successful with brain tumors (which I do not have). It is not known to be successful against ependymoma, but my case is not normal. I take pills 5 nights in a row once a month. The side-effects are mild (a drug suppresses any possible nausea). The radiation caused anemia, which has continued with the chemo. The anemia has never been dangerously low, but sufficient to cause fatigue; I also need to be cautious about infection since my immune system is not at 100%. My blood has been monitored regularly, and I've had a few hormone shots to boost my blood count.
I have a set of MRIs and a consultation at NIH every 3 months. After 3 months of chemo there was no change, and after 6 months there was a hint that the tumors might have shrunken. However, the resolution is not sufficient for a conclusive determination. Most significantly, the tumors have not grown. I have almost no pain resulting from the tumors-I take Naproxen regularly. Every once in a while, if I am very tired, I might feel a twinge. I am able to work full days, and have started traveling again. In fact, I spent a week in Italy, where I served on a thesis committee in Trieste. I sometimes come home a bit early to nap (a family trait), but then work at night on my computer.