Apr 26, 2011

Radiation and... Foot Movement!

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.


Apr 11, 2011

Home Sweet Home, but back to MDACC Tomorrow

Hello, world! It’s me, Roger... blogging again. First of all, many thanks to my sweetie, Holly, for being so diligent and blogging almost every day while we were at MD Anderson. And for being there every day, by my side no matter what. I love you babe! When we last left you here on the blog we were still in Houston and ready to be discharged on April 5th. Everything went as scheduled and we managed to get discharged early enough to venture out and get some lunch, shop for a pair of jeans for me for dinner and then celebrate our 8th wedding anniversary over a delicious nine course dinner in the evening.

Stitch removal - Click for more
The following day we had our follow up appointment with Dr. Lang, my neurosurgeon. We were relieved that he decided that the stitches could be removed. That meant we did not have to stay overnight again in Houston and have them removed on Thursday. He answered all of the questions that we had for him and he also explained to us that the tumor had been analyzed and it returned as the more aggressive Anaplastic Ependymoma, WHO Grade 3. What does this mean? It was more aggressive this time around and this is the highest grade for an ependymoma. Did they get it all? Looking under the microscope during the surgery, Dr. Lang believes so. But it would be foolish to think that every single cancer cell was removed. As a result, tomorrow we are off to MD Anderson again to once again visit with Dr. Conrad, my Neuro-Oncologist. He is the doctor that we did the clinical trial with and we will receive further guidance from him from this point forward. I have no idea what he is going to recommend so I will not speculate but will fill you in on the details after we meet.

OT/PT Eval - Click for more
Last Friday I had my Occupational and Physical Therapy evaluations at St. David’s Outpatient Rehabilitation Services and started both today. I will have two 30-minute sessions of OT for four weeks and three 60-minute sessions of PT for six weeks if not longer. The sessions are challenging and tiring, especially PT. At this point I am not able to move anything in my right ankle or foot and the muscles in my right leg are very weak, but I do have complete sensation. The down side right now because of this deficiency is that I cannot drive.

PT / E-Stim - Click for more
Today we did what is called electrical stimulation (E-Stim) where pads are placed on specific places on the skin and an electrical charge is passed through to make the muscle contract. It basically feels like getting shocked, but is not dangerous and is controlled. The premise is that while the electricity is being applied and activating a particular muscle I am to also ‘think’ of moving the muscle at the same time. This can create a new pathway in the brain to activate the muscle that is no longer working due to damage in the brain. Five years ago I was not able to move my ankle at all and this technique taught me how to do it again. We are giving it another shot. I know… fascinating, right?

Lastly, I wanted to share the MRIs from the day before the surgery and the day after the surgery.
MRI Pre-Surgery: 23Mar2011 (Click to enlarge)
The final size of the tumor pre-surgery: 3.8cm front to back x 2.3cm side to side x 2.4cm top to bottom.
MRI Post-Surgery: 25Mar2011 (Click to enlarge)
Yep, there’s a big o’ hole in my brain now.


Apr 4, 2011

Fun Weekend Leading Up To Discharge

We had a great weekend here at MD Anderson. It started Saturday with animal assisted group therapy. A group of volunteers and their dogs from WAGS come to MD Anderson every Saturday for group therapy. Roger had a great time and it was nice to do something different. Saturdays can be pretty quiet. He worked with four dogs: Zeke a black lab, Cowboy a poodle, Sesame a yellow lab and I can't remember the last dog's name but it was another yellow lab mix. He threw a ball for Zeke to fetch. He started out sitting in his wheelchair then stood. He worked on his balance and lower legs. Then he gave Zeke a break while he pet Cowboy the singing poodle. He "walked" Sesame for a while which was good as the PT there that day had him try walking differently with his quad cane. And it turned out to be better for Roger and helped him a lot. Then he relaxed with another yellow lab. The volunteers were really nice and cared a lot about helping the patients. You can see a video of Roger playing fetch with Zeke below and more on YouTube and more pictures on Flickr.

We had lots of visitors this weekend from our Houston friends the McPherson family and our Austin friends the Farnies and Lana Joy & TJ. It was great to see them all and spend time with them. And it really made our weekend go by fast. Which is great because it got us to Monday faster. We are super excited as Roger will be discharged tomorrow sometime. The only appointments he has tomorrow is to practice getting in and out of my vehicle with one of the PT's. Then we'll be discharged at some point and we have a reservation for dinner to celebrate our anniversary at Feast. We are super excited to go there for dinner. We have been wanting to try them out for a while. Then we have appointments on Wednesday with Roger's neurosurgeon before we head back to Austin. We are both eager to get home and sleep! It's been hard for both of us to sleep well and rest here. But the show doesn't end then. We already have appointments on Friday in Austin for an OT and PT assessment so Roger can get started with OT and PT as soon as possible with no breaks plus the exercises they gave us last week to do three times a day. You can watch a video below of Roger walking today without a cane. It won't be long before he's back to "normal". ~ Holly

Apr 2, 2011

Busy Week

The time here at MD Anderson Cancer Center has been flying by this week. We have been so busy with PT, OT, group therapy, learning new stretches and exercises, getting paperwork to insurance companies and orders to rehabilitation centers, trying to stay rested, moving to a new room and getting relief from being in the hospital with little outings in a wheelchair around the hospital and outside. Time flies when you are having fun. Roger made it down to the big therapy gym in MD Anderson a couple times this week. He started walking with a cane alone Friday and he's super excited about it. You can watch a video of him walking with a cane for the first time below and click on this link to see more videos of him at MD Anderson.

We went over some home activities with the OT to remind ourselves how to get him in and out of the shower and bathtub, what assistive devices we may or may not need and all those other household things until he's able to do them safely and completely alone. He's doing more and more by himself as rehab suggested to help him get back to normal which will help his rehabilitation. We even got a date in Friday night by attending the Rotary House's T.G.I.F. movie night. It was so nice to get "out" and sit on a couch together beside each other. For two hours it felt like we weren't at a hospital. It was great. We have also been given the opportunity to talk to other patients and their families while we have been here and learn about them and their cancer stories encouraging them and they encouraging us in return. It's amazing to me how many people from all over the country we have talked to who had a surgery somewhere else then came to MD Anderson for their second surgery because their cancer returned in the same place or came back somewhere else. It seems the general consensus has been don't mess around and go to the specialists for whatever it is you are dealing with. And for all of these people that's been MD Anderson.

We both can't believe the weekend is here and Roger only has four more days until he's discharged from the hospital. We are both excited and eager to get back home and get started with outpatient therapy and rehabilitation in Austin. Roger is not only ready to regain all the movement he lost but get more mobility and strength to do things he hasn't been able to do for the past five years like cycling and maybe running again. I'm hoping we can throw some dance lessons in there also. :)

We are looking forward to animal assisted group therapy Saturday and friends visiting this weekend. We have to thank God for an amazing week. We have so much to be thankful for.

~ Holly