February 21, 2006
My delayed update
I haven’t written for several weeks for a few reasons. Whittling away my Dexamethasone creates seizures, which creates exhaustion, headaches, which are usually just a couple seconds each, and crankiness towards pretty much anyone I’m thinking of at a given moment if they’re not around—thankfully it seems to pass when actually being with a friend. After a couple months of Jennifer’s careful reducing of it, a few weeks ago I stopped needing to take Dexamethasone. Having been on it for many months, this is a great improvement. Very importantly to me—not to mention friends and family—I am quickly and greatly becoming much less cranky again. Given that my back continues to create pimples and I get headaches, it is taking my body time to adjust. Once my back is back to normal (it’s a pun!) and I no longer get headaches—let us pray—I’ll be able to recognize my own attitude. At which point it would be nice if I were a nice, cheery guy. We’ll see.
Around my last neurosurgery I was put on an anti-seizure drug, Valpro (sodium valproate), in addition to Keppra. Valpro being decades old and something I’d been removed from very early in this whole journey, Jennifer felt that it may now be something pretty useless. Fine by me, especially as the Dexamethasone was removed just fine. I’d been on two in the morning and evening, along with the Keppra. We cut it down to a single Valpro morning and evening and after a week and a half or so there was no effect so as the next step we also dropped the morning one. Waited a week and a half—more seizures. Is it due to my body still adjusting to being off Dexamethasone, do I really need Valpro, or is it something else? So about a week ago we re-added the morning Valpro and we’re waiting to see. It seems very slow to really know what will happen. We’re watching it.
Another reason for my failing to write for a long time was that I was hoping to hear from Dr. Laherty in Brisbane about my MRI, which is now a couple months ago. In January he called to tell us that he’d never received the scan from the place that made it, so Jennifer had them actually get it done. About a month late… we still hadn’t heard anything about it. Very early Friday morning next week we head up to Brisbane to see Dr. Walker, the neurosurgeon who performed my last two surgeries. I assumed that this is the standard long-term post-op check-up. (Hmm. I’m out of hyphens.) He called today, and as he and Laherty are in the same hospital in the same department, he has arranged a new scan a couple days before we meet. We’ll ask Dr. Laherty if he’d also like to meet, although perhaps we’ll all meet together. Also in the same department is the woman (sorry, me and names) who did my initial neuropsychology test before my first neurosurgery there and visited us in tears at my second one. Liking her very much, we’ll try to visit her again too.
Being in Brisbane for the Friday we’re planning to spend the night there—just the two of us, with friends taking care of Chloe and Dylan at home—making it a date. Last weekend Leela came over Friday night and on Saturday Jennifer and Deryn disappeared together to have a couple days off. They had a great time with much-needed relaxation while Leela and the kids and I had a great weekend together too. It is very nice to see Jennifer get a much-needed break and we’re looking forward to something of a day-and-night off in Brisbane.
I recently read the first book that I’ve managed to since my initial grand-mal seizure. Before all this started I’d ordered Robert Monroe’s Ultimate Journey, but it hadn’t arrived when all this started. A couple of friends borrowed and read it, wondering if it had anything to do with my journey—and my out-of-body one way or another—but although I continued to read my regular web sites for the most part, I wasn’t able to focus on a book with any effort. However, I’d dusted off this book for the third time and with great effort and a sporadic brain I read it cover to cover. That was a great improvement. Oh, and this being the last of his three books, the others I had also already read and re-read over the years, I really enjoy it.
About a week ago we’d come home one evening and had a long phone message from Wayne about various things and implying something else. He sounded like he was going through something intense and emotional. Although he mentioned nothing about it in the message, Jennifer and I immediately felt that the Aboriginal that he and I had travelled far north to see had passed away. Hoping we were wrong we would have called Wayne right away but his message to us had said that he’d be out that evening. The next morning she and I were to drop off the kids and then go ourselves to pilates exercise, and when we got home we had another message from Wayne, so we called him immediately. After telling us about several things he said that Grandfather had died. In the aboriginal culture they ask people to refrain from using the person whose passed name for two years, and so we use Grandfather. Thank you, Grandfather. He’s still around.
Posted by Peter at February 21, 2006 08:37 PM
I was a Mac client of Peter's in Byron. I've been following your journey and sending you much love over the past year. Your website has been courageous and inspirational. I'm wondering how you are doing?
Posted by: Annah at June 27, 2006 12:33 PM
Post a comment
Thanks for signing in, . Now you can comment. (sign out)(If you haven't left a comment here before, you may need to be approved by the site owner before your comment will appear. Until then, it won't appear on the entry. Thanks for waiting.)