Sorry for the long delay between posts… two weeks ago today we went to see my Neuro-Oncologist, Dr. Conrad. He will be following me primarily now that my Neurosurgeon, Dr. Lang, has done his work. Dr. Conrad was very satisfied with the MRI and agreed that Dr. Lang did a spectacular resection. What is next? Dr. Conrad does think that we should hit the resection area with radiation to make sure that any tumor cells that were left behind are killed. Any type of radiation that I have to do will be done every weekday for a period of four to eight weeks. I don’t plan to do it anywhere else but at MD Anderson so I assume I’ll have to go on Disability again. But I have absolutely no leave left and in fact, I’m in the hole about 50 hours. At this rate I’ll never be able to take a vacation since I have to ‘pay’ it all back by working. But we will not do any radiation therapy until after I have plateaued in my Physical Therapy. I am scheduled to return to MD Anderson in July for a follow up MRI and if I have plateaued, or am not having any more improvement in PT, we will meet with a Radiation-Oncologist and talk about our options for Radiation. But if I am still seeing gains we’ll put the radiation off for another three months after that. Pretty standard and very safe… I like how they think.
Speaking of gains in PT! Last Friday night I thought I’d cross my right foot over and rest it on my left knee and see if I could move my right foot just for the heck of it. And guess what?!? It moved!! It wasn’t much, maybe just ½ an inch at the ankle, but darn it, I moved it!! The next night I tied it again and not only did my foot move at the ankle but all my small toes also rose up! This is big people… this is the foot that my surgeon didn’t think would come back. Since then I have been able to move it every day. Yesterday, we were doing E-Stim on the foot and after the E-Stim turned off, I was able to keep my foot in the up position and then release it. So we are definitely seeing some gains and I am very excited. The only problem is that when I have a rigorous day at PT I am completely exhausted. It is more of a mental exhaustion than anything else. I can’t describe how difficult and draining it is to try to move a limb that was paralyzed and now very weak. I look at my foot and just try to think about moving it and sometimes it moves and sometimes it doesn’t. It is so hard to do, very draining; in fact I grit my teeth and my am straining so hard that I forget to breathe. But we’ll get there... slowly but surely.
I am supposed to return to work next week on May 5th, but my therapist doesn’t think I am ready and neither do I. How am I going to get up at 6am, go to therapy at 8am and then start working at about 9:30-10 and finish working at 7pm or so and I still need a nap after therapy now as it is? I just don’t know how I’m going to do it and I don’t think I want to. The short term disability people are going to call to see how I am progressing this week and I’ll let them know my concerns and I also have a follow up appointment next week at MD Anderson to meet with my Physical and Occupational Therapist doctor there so that they can check on my progress. I think we’ll get it all figured out soon enough.
My good buddy, John Rich, is coming to Austin from DC this Thursday for a few days to help get me around and just to catch up. He’s a great guy and I need the decompression laughter that I know will ensue when he arrives. And Holly has been taking pictures and videos of my therapy but we have to work on getting them posted, so keep an eye out for that.
That’s all I have for today. Thanks for reading and please keep on praying for my leg to be healed and for my energy level to stay up so that I can do my exercises at home.