Your support has once again helped us over some bumpy patches. After yesterday’s post, tons of helpful information flowed back to us about heavy dose steroid effects, leaving us more informed and cheerful about where things stand. We think we’re getting a better handle on the physiological effects of this dosage, about which we’d been dense.
While we feel that we’ve had great medical care—in large part, of course, because we have had such top-notice advice from the very beginning from so many of you—and among us, we’re reasonably informed consumers, there are still overwhelming parts of this. It’s probably inevitable that there will be information overload, things we were told but didn’t absorb, or things that there’s just no feasible way to tell a patient without a frame of reference for the magnitude of what’s to come. (We’ll be writing more about our voyage through medical-world as we did keep up our research as we went, and have some comments.)
This is all a way of saying that incredibly helpful leads came in to suggest that many of the effects we’re seeing right now are quite likely related to the heavy steroid doses I’m on to reduce brain swelling. The steroid stories we’ve gotten have been informative, sweet, funny, reassuring and helpful, and we are again in your debt.
Keeping this blog has been an incredibly valuable experience for us, in dimensions we hadn’t anticipated. First, of course, has been the support that it’s provided. Originally, it had seemed to us like an efficient way to send information out to keep worried friends from feeling like they were intruding by calling—concerns so many nice people expressed we wanted to be responsive. That purpose, at least for us, was instantly subsumed by how much we got back from keeping things up to date. The support has carried us daily.
The other thing that flowed in yesterday were reassurances that I haven’t sounded as broken as I feel, with huge numbers of comments that have made us laugh and count our blessings.
What’s also emerged is how much writing all this down has helped us organize, ground and tie down some pretty strange events. We catapulted from a rich and full regular life one day into brain surgery (it still sounds strange!) with almost no transition. Sorting it through with those who mean so much to us has helped keep it comprehensible. Getting comments and advice on various events (like the steroid effects!) keeps us from feeling isolated or overwhelmed. If fact, we feel completely enclosed in a sense of community and sharing and that it’s ok to be scared when we are, because we know you have our backs. Saying thank you seems inadequate, but that’s what we have to say. So, thank you. Again and again and again.