Little nervous this morning as we face our first 5mg steroid day in the continuing ramp-down. Earlier this year, when I tried to ramp the steroids down, we got into trouble around 5 mg – the left side started to shut down as brain edema – an artifact of last December’s radiation therapy – returned and I wound up sufficiently miserable (and immobile) that my neuro-oncology team put me back on 16mg.
That worked for a while (fortunately, for a couple of glorious days in Paris) before the steroids stared killing muscle strength faster than they were stopping the brain edema that was shutting down the left side. So we were both on high doses of steroids and immobile. Yuk.
Fortunately, right about then, Linda took me over to UCSF’s Osher Center and I started physical rehab among other ‘integrative’ therapies. Slowly, the rehab began to give me a little strength, and I re-started the steroid ramp-down. So here we are, 11 weeks later, just getting back to 5mg.
In the meantime, we’ve become strong enough to get out of a chair, coordinated enough to pull on shoes and socks much more easily and am doing one or two daily exercise routines (strength and dexterity routines 5x a week plus stationary bike interval training 2x, now 3x a week). The other good news is our last MRI showed reduced flair – the combination of the tumor and surrounding edema.
The verdict? So far so good.. my left leg is wobbly, as it always is after the hard strength workout, but doesn’t have the ‘paralyzed’ feel of the edema. In fact I am typing these lines with the left hand – a very good sign that we’re holding our own at 5mg…