When I looked at my phone and saw that someone from Neurology had left me a message a few minutes earlier, I thought it was a coincidence. But no, it was Dr. B: “… Your MRI of the cervical spine looks much better, with significant improvement in the swelling and in the scar that you had compared to before. So it seems that the Cytoxan is doing what it’s supposed to with reduced inflammation, so my suggestion would be to continue the treatment…”
I was astonished at how quickly I got the results. It was 5pm when I was being rolled out of the MRI machine. By the time I got home, 40 minutes later, an alert had been sent to my doc to tell him that the results of a test he’d ordered were available, he’d looked at the scans, made his assessment, called and left the message. I was flooded with relief. I’d been fully prepared to have to wait a couple of days for the results.
The news was what we’d been expecting, but you never know. I was steeled against the possibility that despite the symptom improvements of the last couple of months, the MRI scans wouldn’t show much reduction in the inflammation. My poor spinal cord! My crazy relentless immune system! My achy, twitchy muscles! But now we know that there is at least a chance for some of the compressed nerves to resume functioning and for the other nerves to find new pathways to carry messages from my brain to my limbs. Miranda talks about the fabulous “neuroplasticity” of the human body. That’s what I’m counting on.
By coincidence, an article about my situation appeared this week on the UAB Medicine website. Of course, I hate the picture (the only pictures of myself that I like are ones that include Josie), but it does a pretty good job of addressing my situation and, more importantly, the quality of care that I’ve been receiving. (There is one unfortunate error in the story – it refers to my attending a meeting of the “Division of Medical Journals.” It was actually the Editorial Board of the BMJ – British Medical Journal.)
UAB has a well-deserved reputation for clinical excellence, but I don’t think the story of how much emphasis is placed on the overall patient experience is as well told as it ought to be. Yes, what I’m dealing with is tough – imagine how much worse it would be if not for all of the amazing people who’ve had a hand in my care!
So we’ll count on the cytoxan (cyclophosphamide) infusions to keep the inflammation down. I know there won’t be any dramatic improvements. On any given day some things feel a little better and some are a little worse. The struggles are never-ending. But overall, things are moving in the right direction. Maybe not at the speed of light – but we’re moving.