Bad, bad blogger

I've been so bad updating my blog as of late. I have the problem in that I don't like to go out of order. I have not yet blogged about Ben's birthday last Saturday, because I have not yet had time to upload and edit the pictures. Therefore I cannot blog about anything else until that is done! Or so my methodical logic tells me.
And I will blog about Ben's birthday (he's 34!), hopefully tomorrow before Mosey's birthday on Saturday (he'll be 5!).
Today I went to Houston for my 6 month visit with my oncologist, Dr. Popat, at MD Anderson.
It was fine. They took blood, he listened to my heart and lungs, asked if I felt well (yes), if I had any questions (no), how I felt about how I'm doing in the study (don't really know, I guess pretty good), went back and drew more blood (oops, they forgot a couple tests), and that was that.
Well, then he sent me at the last minute to Baylor to see my neurologist, Dr. Hutton.
I really, really like Dr. Hutton. His office hasn't been the most on-the-ball, I'm not sure why. Dr. Hutton said they're going through some personnel restructuring, and he seemed genuinely upset that my phone calls and messages over the past few weeks were not answered. So upset, in fact, that he gave me his cell phone and email address! What doctor does that, I ask you?! He must trust me not to forward him all the latest miracle cures for MS that come my way. :-)
Anyway, when I was with Dr. Popat, he asked when I was seeing Dr. Hutton, and I told him I hadn't been able to schedule a visit yet, so Dr. Popat called Dr. Hutton himself, and voila! An appointment was made for right then! ( I actually kind of felt important!)
I didn't really want to go, since I knew that this neuro appointment was supposed to involve the full EDSS scoring (walking tests, math test-- yes, really, peg test, etc.) and I had already been walking all over creation (it felt like) at MD Anderson and I was hot and tired. Plus I forgot my Baclofen this morning and was a spastic mess. Plus I only got 4 hours of sleep last night (had to leave for Houston at 5:30 AM and had to get all the boys' stuff ready for the day, blah, blah, blah).
Plus, I had timed everything so that if we returned to Austin right after my MD Anderson appointments, I'd get back in time to take the boys to piano lessons. But an appointment with Dr. Hutton messed with all that. I was very frustrated because I knew I wasn't in any shape to do the EDSS scoring, and he'd want me to come back later anyway, so a visit with him was just going to be a waste of his and my time. So I called his office and tried to communicate this with the person at the front desk, to no avail. So I went. And it was probably good, since I left with his cell and email, the cell and email of my new nurse contact there, and the assurance that my MRI and neuro appointment will be made post haste. Actually, they had tentatively scheduled an MRI for this very night at 10:00! It didn't work out for me to stay for it, but I was very impressed by how quickly they made that happen. I'm not sure I ever wrote about the long and involved and very, very frustrating saga of getting my pre-transplant MRI's scheduled last spring. It literally took 3 months. Although I think 2 months and 29 days of that was time wasted by an incompetent, although very nice person who shall remain nameless and who no longer works at Dr. Hutton's office, and 1 day to actually schedule the MRI.
Next week I'll probably go back to Houston for the full neuro visit and MRI's. It's actually making me a little sick to my stomach. I've been fairly successful in keeping myself really busy and preoccupied and not thinking too much about my MS stuff. But the MRI will be big. If there are new lesions, that is NOT a good thing. Really, really not.
I don't think I've really seen any deterioration since I came home from the hospital, but I also don't feel like I've recovered as much mobility as I had before the transplant, so I don't know what to make of that. Maybe there was some trauma that happened during that one really bad flare at the hospital when I reacted to the ATG. Who knows. Maybe nothing.
I just feel like skipping the MRI and continuing on in ignorant bliss. But then again, if there has been no change on the MRI, that will be incredibly encouraging. So I'm very, very torn.
I'm afraid I'm going to be a mental case for the next week or so. Maybe it's time to break out the Xanax? (kidding)
Anyway, I'm back from Houston for now, had a safe and very enjoyable trip driving out with my friend Sue (who volunteered last night at about 9:30 PM to come pick me up at 5:30 AM and spend her entire day driving me to and from Houston. Major, major brownie points), and now have the cell number and email address of an actual, real-life doctor (insert evil laughter and hand rubbing here).