The fun never stops

Every day seems to bring new challenges. I have to say that despite the challenges, my health overall still seems good and I do think I'm seeing improvement in my mental clarity as I'm mid-way thru week four of radiation and chemo.

Unfortunately, two new side effects to my treatment have decided to grace me with their presence. I just can't seem to catch a break here. The first side effect I mentioned on a previous blog: I get all hypoglycemic/shaky-feeling at different times during the day despite my vigilance in maintaining what should be adequate calorie intake. Most people taking high dose decadron (steroids)get hyperglycemic and have to watch carefully to be sure their blood sugar doesn't go to high. But me...not so much. Nope, I'm having to fight to keep my blood sugar from plummeting. I mean...what's with that? Fortunately, my radiology oncologist decided that we can attempt to taper the steroids, so yesterday decreased my dose from 16 mg to 12 mg/day. The big question here -- and it's a big question -- is whether I can tolerate weaning the steroids. If any of my neurological symptoms reappear -- and my doctor's not going to allow any wiggle room for this -- then I go right back up to my maintenance dose. So keep your fingers crossed on my behalf.

The other side effect is essentially SIADH, which (for those non-medical people reading the blog) basically means that I'm releasing too much of a hormone that leads to low sodium in your body. So...I'm thirsty all the time but really shouldn't be drinking a lot of water, because that can lead to fluid imbalances and such. This little issue is less problematic for me, really, than the hypoglycemia thing, but it's just one more annoyance and frustration to deal with.

My radiologist is also talking about having me do a repeat MRI in the next few days to see what kind of progress the treatment is having in shrinking the tumor. If the tumor IS getting smaller, then they can "cone down" -- that is, reduce -- the focus of the radiation beams, which would be great for many reasons. Again, keep those fingers crossed.

I've had a number of recent emails from my friends about not having a mailing address for me, so thought I'd slip that in here. I do so appreciate the cards and notes I've gotten from so many of you. They inevitably make me cry (which I don't see as a bad thing...emotional release is GOOD), and the contact from the "real world" helps keep me feeling connected. So if you feel like writing: 51 Stevenson Ave., Berkeley, CA 94708 is how to reach me.

Many, many people have contacted me and my family, saying you'd like to be able to help us through our challenging time in whatever way you can. It's taken a while to be able to get things stabilized enough to even think about how we can take you up on your offers. It's not an easy thing, in some ways, to ask for help, even when that help is so generously offered. But we're thinking about it and will hope to have some thoughts on that in a near-future post. I just want to say again how much I appreciate the way you've reached out to us at such a spectacularly challenging time.

My love and gratitude to you all. /ab