It has been a few months since my last circular. On the one hand, there is not much new to report. I continue with the carboplatin treatments. The MRIs taken this week show no change in the tumors. But on the other hand, my life seems to be more 'medicalized.' The medical side of my life-visits to doctors' offices, fussing with pills and injections, blood tests, renewing prescriptions, consciousness of side-effects-is taking more of my time and psychic energy. The chemotherapy is much more of a shock to my system than radiation ever was, and of course, once I recover from one treatment, it is time for another. Another factor may be that as a physicist I don't mind being strapped down in an accelerator, but I find it disturbing to have an IV stuck into one of my veins.

As for specifics: I am finishing the fourth carboplatin cycle; the next treatment will be in about two weeks (we are going to LA in a week). I feel punk for a few days after a treatment, with 'punkness' peaking about three days afterwards. Then about two weeks after the treatment the blood counts start dropping, and are low for about 2-3 weeks. Three out of the four cycles the red blood cell count dropped to the point that I was given a transfusion; the low red blood cell count exacerbated fatigue, but as far as I can tell was not dangerously low. During this period when the blood counts are low I get frequent injections to boost this component or that; the platelets have been a major concern, and at times I have been getting daily injections of neumega (we learned how to do these injections at home). Between the frequent blood tests and the injections, I am feeling like a pin cushion-more to the point, my veins are getting scarred (I would not make a good heroin addict…). As you can imagine, this drug cocktail has a few side-effects, such as edema.

But the good news is that the tumors have not shown any progression during the months I have been on carboplatin; this week I had another set of MRIs (I have them every two to two and a half months). This is the best result that could reasonably be expected.

I have joined an e-mail support group of people with ependymoma (mostly of the brain). Most of these people have had a much rougher time, and have real deficits. I realize that I am fortunate that my illness is a perturbation (albeit a major one) on regular life, and not the other way around. I was taken aback when my primary-care physician asked me during my physical (yes, occasionally one has think about the rest of the body) whether I was still working. What?!?