pathology? treatment?
So, as it turns out, I had a grade three oligoastrocytoma. *Not* what I was hoping for (was hoping for grade two oligodendroglioma. The "astrocyte" part of my stuff is much harder to do battle with, and of course we always want lower grade growth.) They think that Mr Fancypants surgeon did a good job and may have gotten rid of all of it. So yeah, good for him. I'm still left with treatment decisions, and without enough information in the world to make them.
#1 Restart chemotherapy, taking it monthly, with frequent rescans of my head.
#2 Chemotherapy with radiation, daily, for six weeks. A tougher option, but may set myself up for cognitive decline in a few years as a long-term side effect of the radiation.
So, how to decide? Do I want to do radiation? Of course not. May have permanent hair loss, may have long-term cognitive issues. But do I want to kick its booty? Why yes I do. Radiation would give me the best booty-kicking chances. But one doctor really recommends waiting for the radiation. He says that he would, because he really prizes his own intellect (I very much relate to this sentiment.) So, it comes down to a quantity versus quality of life issue which nobody can really honestly predict for me. I asked him what I should read to inform my decision and he admitted that there is nothing for me to read. So my sister and her husband found journal articles online, which I'm reading...and they are fairly distressing. After my "five year freakout" six months ago, reading that I have maybe fewer years left is, um, upsetting. And possible cognitive decline? Not something that lights up the way.
So if anyone has wisdom, I'm open to it, but I don't think there is one clear answer for me. Right now I'm leaning towards the radiation option, which I'm told is the standard of care. I think I would be a badass to just do chemotherapy, and really like that notion, but may be a bit to fearful to walk that tightrope. In any case, it is clear that my disease is doing what my disease does, which is to progress and worsen. Motherfucker.
#1 Restart chemotherapy, taking it monthly, with frequent rescans of my head.
#2 Chemotherapy with radiation, daily, for six weeks. A tougher option, but may set myself up for cognitive decline in a few years as a long-term side effect of the radiation.
So, how to decide? Do I want to do radiation? Of course not. May have permanent hair loss, may have long-term cognitive issues. But do I want to kick its booty? Why yes I do. Radiation would give me the best booty-kicking chances. But one doctor really recommends waiting for the radiation. He says that he would, because he really prizes his own intellect (I very much relate to this sentiment.) So, it comes down to a quantity versus quality of life issue which nobody can really honestly predict for me. I asked him what I should read to inform my decision and he admitted that there is nothing for me to read. So my sister and her husband found journal articles online, which I'm reading...and they are fairly distressing. After my "five year freakout" six months ago, reading that I have maybe fewer years left is, um, upsetting. And possible cognitive decline? Not something that lights up the way.
So if anyone has wisdom, I'm open to it, but I don't think there is one clear answer for me. Right now I'm leaning towards the radiation option, which I'm told is the standard of care. I think I would be a badass to just do chemotherapy, and really like that notion, but may be a bit to fearful to walk that tightrope. In any case, it is clear that my disease is doing what my disease does, which is to progress and worsen. Motherfucker.