Let's start with phone calls. I talked to Dr Pupillo's office - he is the neurologist who is prescribing the anti-seizure medication and is in control of my driving future. I told them I was going to be running out of the prescription 3 days before my appointment with him so I wondered if I need to refill the prescription. If they're going to take me off the meds on the 18th, it makes little sense to me to buy a bunch of pills I'm not going to need. So... they scheduled me for an EEG next Monday. Once they have a look at that, they'll know if I need to continue to take the anti-seizure meds. And if I can go back to driving. So that was good. Pro-active is good.
I also talked to Connie the Angel about my concerns that I will have access to brain tumor experts during the treatment phase that will soon be upon me. Without coming right out and saying so, she assured me that I would have access to experts at Mayo Clinic. Even if I didn't request it, the doctors here in La Crosse will be working with brain tumor experts in Rochester. Some of this is admittedly me reading between the lines. She does not work in Oncology; it's not her place to comment on specifics. She did strongly encourage me to address these questions with the Onks tomorrow. I was satisfied for now that I'm not going to be left out there hangin' with only non-experts working on my case.
I need to reiterate - I am not saying anything at all about my Onks expertise or lack thereof. I'm only talking about my need to make sure that people are involved in my case who are specifically brain tumor experts. We will be talking about this tomorrow with the Onks, I am certain.
The big phone moment of the day came when I hooked up with my new hero Scott. We celebrated Scott on these here pages a couple days ago when I fished his story out of a pile of Google links. Of course it was wonderful to get to pick his brain regarding his experience - I took many notes. The total bonus was that I like this guy. He's smart and kinda intellectual. He has philosophies and stuff. It was like he was saying stuff back to me that I had been thinking. His approach to the fight with this thing seems very similar to mine. Things like "If things are not improving, it's generally better to do something rather than nothing."
It was an hour I'll never forget. Just for the hell of it, let us celebrate Scott once more.
The hard drive on our main downstairs computer took a dive right before I went in for surgery. When that computer is down, it means the kids pretty much have to fight over one relatively crappy computer out by the kitchen. Even though it was a simple hard drive replacement, I have not felt comfortable enough with motor skills to go digging around in there. Until today. Except for the 2 house flies that would NOT leave me alone while I was performing the operation, everything went very well. We're back up and whole with the computer situation.
I had lunch with Lou, my former boss and cancer survivor. It was so very good to see him. He came bearing gifts - two books. The first was Cancer Report, which focuses on strategies for integrating the healing powers of the mind into the process of recovering from cancer. I am probably grossly oversimplifying, but that seems to be the gist of it. It was co-written by a gentleman with whom Lou and I both once worked. I will be reading it cover to cover.
The second book brought tears to my eyes. There is nothing like a truly thoughtful gift that strikes right at your heart. *sniff* I told you Lou is a helluva guy.
Click on the image to see the book on Amazon - since I'm borrowing their picture.
Lou and I had talked some during our working relationship about his experience but never any detail. It was good to hear his story. It was also just good to catch up with him after not talking with him for awhile. And the BBQ chicken was rather tasty too.
Lori went out this evening to spend some time doing some quilt consulting with a friend of hers. I spent the time lying about watching a couple episodes of Season 3 of The Wire. It's not TV, it's HBO. Excellent television if you're into that kind of thing.
Keep those cards and letters coming. I very much appreciate hearing from you all, whether you're posting here on the blog or sending me email. You know who you are.
Tomorrow promises to be an eventful day, what with meeting with the Onks and all. Hopefully it won't be as dramatic as last Tuesday or the days right before the surgery. Extra little dashes of thoughts, prayers, and general good vibes are welcome. I expect to keep you all informed here as soon as we get back in the evening.
Possible TMI alert: This evening my wife and I successfully performed our marital duties with one another. (Just to be clear, I have been the one who has been slacking.) It may not be completely appropriate for all y'all to take part this time, but I can assure you - I be celebraTING!!
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