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.

-roger

On Our Way!

I'm typing this on an iMac so it is going too suck. We were up later with our friends than planned. So, we're getting a later start than we planned, but it is ok... God must have wanted it that way. We're getting ready, will load up, maybe meet out good friends John and Tamra for breakfast and will be on our way. We anticipate hitting a few thunderstorms on the way to Nashville, but we should get there before 9pm. I might even blog along the way. Goodbye Walter Reed!!!

No surgery now and Almost done in-processing

The weekend went well – but it was very tiring. I went with Amanda to the house we worked on at 7am on Saturday morning… yes!!! 7am! We really had a good time working out there all day. I personally worked on a few projects. First of all, I took over 150 pictures for Amanda. I also worked on fixing a toilet, installing smoke and carbon monoxide sensors around the house and then repairing the fence that surrounded the house, which involved hammering in probably a hundred nails! After we cleaned up, we ended up back at John and Tamra’s for some pizza and games. Sunday we went to church and then John took me to the PX so that I could buy cleaning supplies for the room. After that, we headed back to the house to try to finish the fence. The fence was repaired, but needed to be primed and painted. We were able to finish priming and painting the outside of the fence, but only got as far as priming part of the inside of the fence. I guess we’ll need to go back and finish the job in the future. I left with John, Tamra and Zach, we had dinner, and then they dropped me back off at WRAMC.

Walking back into my room was a shock. I hadn’t realized what a mess I had left it! I decided to start unpacking and I just kept going and going until I felt like it was habitable. When I looked at the clock, it was 3am. You know… it was worth it. I’m just one of those people that unpacks first just to get comfortable. I’m glad I did because it was done! Yeah, I had to be at a formation at 0830 Monday morning, but I could get sleep after. I got a few hours of sleep and walked into the Gym across the street from our billets and was surprised to see a gaggle of people just sitting on bleachers. Apparently, a formation just means we show up and they account for us. I was expecting to stand in lines of platoons and squads, but I guess we don’t do that here. After that I ran off for a quick breakfast and then met with my social worker who talked to me about my options regarding choosing to stay in the reserves or elect to have a board where I will be medically discharged or retired depending on what disability rating I get. Well, I’ll have more on that later. The rest of the day I just went from place to place to continue in-processing. I was exhausted from all the walking around and decided to go back to my room to take a short nap. Well, the short nap turned into a long nap and I missed dinner. I set my phone to wake me up, but dismissed the alarm. Thanks to my friend Jill N. who called to say hi, she woke me up before I slept way too long! Luckily, there is a little place in the hospital, called Walt’s, which is open rather late where I can use my meal card. I got a hot dog, a salad and some other items, and headed back to my room. I watched some TV, worked on a little paperwork and went back to bed.

This morning I was awakened by a phone call at 0630 by my new squad leader. I knew it was him because I put all the numbers I needed in my phone and the Caller ID tipped me off. I’m not really sure what we said to each other… I guess he was checking on me to make sure I was ok. I went back to sleep thinking that I didn’t have to check in now and decided that I was going to sleep in to get some rest and finish in-processing in the afternoon. My phone woke me up again at 0900 when another squad leader from the platoon called to see if I was okay. Man… I told him about the earlier call and he said he never talked to the guy who called earlier, so they didn’t know what my status was. Anyway, I hope that never happens again! Okay, so I finally got my lazy butt up at 1100 and got going. I must have been extremely tired from the weekend and Monday. I did all the in-processing I could for the day and got ready to go to community group. I made it from WRAMC to where we meet in Arlington in only 40 minutes, which I think is pretty good for mass transit. After the meeting, friends Kezia and Jana gave me a ride back here.

Okay, last thing… my neurosurgeon has wanted to fix the incision on the top of my head for quite some time now. He just doesn’t like the way there is an indention and no hair across it. We talked last week and I thought we were going to do it this week. But after my neurologist said they might be able to go back in to fix the seizure issue, everything got confused. I finally talked to him today and here’s the skinny: My neurosurgeon doesn’t think that any surgery in the brain should even be attempted until all other options have been exhausted and no earlier than 36 months after the end of my radiation therapy. Not only that, but he doesn’t even want to work on my scalp until 12 months after the end of my radiation therapy… which is mid-July. So, no brain surgery for at least two more years, and no working on fixing the scalp until after this July. But he and I are confident that they won’t have to go back into my brain. I know I’m in good hands and he’s pretty sure it will resolve itself over time.

The other issue I have been having here is that my Narrative Summary has not been completed yet and I still don’t have the permanent profile that I need to get this process started since my new doctor last week changed it to a temporary one. Well, I explained all of this to my neurosurgeon and he is going to do both. It won’t be this week, but he said he’ll take care of it. With him involved now, it looks like I am in good hands. I’m going to let my case manager know and put them in touch with each other, if necessary.

Tomorrow I have to attend three briefings throughout the day, so it should be an uneventful long day. But I’m almost done in-processing! After tomorrow, all I’ll need is to have my teeth checked and I’ll be done.

Moved In... Sorta'

Thursday was a very busy day for me. I had to go to the office to finally turn in my badge, turn in some keys, take care of some paperwork, but most importantly... sign and get a copy of my NCOER!!! The ordeal is over! It took a few weeks, but I finally got it in - and it was a pretty good review. But it took so long to get everything done that someone had to drive me to WRAMC for my 1530 doctor apointment (Thanks for the ride Alan - and thank God for that GPS!) I made it to the doctor appointment and it went well. My new PCM is on the ball and should be easy to work with over the next few months. Earlier this week I got a call from a nurse at the clinic at Fort Belvoir - she told me that a test they did on my blood last week came up positive for G6PD deficiency. I'm not going to go into detail about what is now because when I told the doctor he thought it would be a good idea to run the test again to make sure they got it right. He's also going to check my liver enzymes to make sure they're at a decent level. I went down to the lab, they took my blood, and I was off to my apartment to pack. I also finally talked to my Neurologist and we talked about my EEG results. We had a bad connection, so at first I thought he said that they were wildly abnormal... I was confused! But it turns out that he said they were mildly abnormal. He didn't see any epiliptic activity and said that the results were in line for what would be seen in a post brain surgery patient. So, basically nothing to worry about right now. We just need to see how this new drug works over time.

I'm learning how to get to and from WRAMC using the metro system. Buses run pretty frequently on two streets at the front and back of the post. I take a bus to the Silver Spring metro station and then take the red line to Metro Center and transfer to the orange or blue line to get to where most of my friends live. Total time during rush hour is about an hour. I'm guessing that off peak it will take about an hour and a half. I don't think it's too bad - the fact that I can even get around this easily is amazing.

I went home and started packing. A few friends from my new Tuesday night Community Group from church came over to help and after a while we got hungry, so we went to Cafe Asia to eat (I love their food!) They all went home and I continued to pack. With an end in sight I kept at it until 3am when basically everything was pretty much ready to go.

This morning Tamra came over and we got everything loaded into her car and made the trek over to WRAMC. When we got there we had a hard time figuring out where to park to offload the goods. A young Private agreed to watch the car while we unloaded in the circle drive and took everything up. When we finally got everything up to my room on the third floor, my key wouldn't work on the door. Tamra went down to park the car and I went down to the S-4 office to see what was wrong. They told me to call the guy that assigned me the room. I called the SSG that assigned me the room and he said I needed to call S-4. Not so fast! No passing the buck here... he told me to meet him at the S-4 office. It turned out that since I didn't put anything in the room, when they did a walk-through of the rooms, my room was empty, so they assigned it to someone else. Now, this may sound like a Charlie Foxtrot to you, but this is par for the course for an Army operation. Anyway, several phone calls were made, rooms were looked at and by the time we were sure I could have a room on the second floor, two hours had elapsed.

The room is decent. Each room has a walk-in closet, tile floors, a bathroom with a stand up shower, a kitchenette with a small stove, fridge, microwave and sink. There is also a plasma TV and an iMac in each room. The room wasn't exactly clean and the furniture wasn't placed very well, so we methodically moved furniture around, swept and mopped the floor underneath and put it all in new places. It took us quite a bit of time to get everything wiped down and cleaned up. We basically got it to a state where Tamra could take all her cleaning stuff home and I could finish up any odds and ends when I get back on Sunday. It was getting late in the afternoon, so I packed up some clothes for the weekend and we headed out. John, Tamra, Zach, Amanda and I had a nice dinner at Ray's the Steaks between Rosslyn and Court House and then we hung out at John and Tamra's for a bit. Now I'm at Amanda's for the weekend. She graciously offered their spare bedroom to me and I gladly accepted.

Tomorrow we're working on fixing up a run down house in Alexandria and then rest in the afternoon. I feel like I have a lot to do in my room still and that's occupying my thoughts. Amanda offered me some towels and bedsheets that I can use while I'm here. I have towels, but they're thirteen year old brown Army towels. And they gave me bed linens, but they're not fitted and not comfy. Thanks Amanda! I just need to unpack and get everything put away so that it feels like a home away from home. After that, I'll be happy. Please pray for a smooth move-in!

More Successes Today, MRI Tomorrow

Today Tamra and I did the whole military hurry up and wait thing. She picked me up at 0700 and we headed down to Fort Belvoir, stopping at a Dunkin’ Donuts for breakfast. We got to the clinic at 0730, checked in and then we waited… they called me back to take my vitals at 0800 and I went to another waiting room with Tamra. And there we sat… and sat… and sat. I’m not kidding. We sat there for hours and finally near 1130 they called me back to see a doctor. They only had two doctors working, and so many people showed up to in and out-process, that they had to fit us in between other patients. The doctor that saw me questioned how I was going about the process. I told him about the plethora of people that I have talked to about how to go about this and he still seemed confused. He finally gave in and did what he had to do; he approved my permanent profile and gave me a form 14 that I’ll take to WRAMC. Then he said he needed to call someone at WRAMC, a LTC. It turned out to be the same LTC that told me to go this route to begin with! So, everything has come full circle. He didn’t reach her but sent me on my way a little after 1230.

I didn’t get a call from work either about my NCOER, so I didn’t have to stop there. I had a nice early day and got a chance to take a nap. I did call the LTC at WRAMC and also had to leave her a message. She called me back this evening and said that I needed to come in as soon as I could. But tomorrow I have appointments with my Oncologist, Neurologist and I have an MRI, all at Bethesda NNMC, throughout the day. I told her the soonest I could be there would be Monday morning, so I have a 0800 appointment. She said that she looked up my record and noticed that my home of record (HOR) is Austin, TX; she suggested starting me at WRAMC and moving me to Brooke Army Medical Center (BAMC) in San Antonio, TX to finish up. It was loud where I was and couldn’t really have a discussion so I just said I understood and told her I’d call back tomorrow with more questions. We’d really like to do the MEB here in DC because of several reasons:

• -My doctors are all here
• -I have lots of friends and support here
• -I have a supportive church here
• -I can’t drive and could get around well on the Metro
• -Holly can come to DC to work and see me too (maybe)
• -I might have another minor procedure to improve my incision next week (4/27)
• -I think the care would be far superior

So, I have my reasons. But ultimately, it is going to be what the Army wants. But, my prayer about not wanting to move before this weekend has been answered – it will for sure be sometime next week. I have that MRI tomorrow, so please pray that the tumor has not come back and that I’m still healing up there. I think I am. Tomorrow evening we’re having a little celebration dinner for Tamra. Today was her last day in uniform in the Army. Now’s she’s on terminal leave until July (I think.) If you're interested in joining us, let me know. Tamra, you’ve been a real life saver and great friend this week. Holly and I thank you and John so much for supporting us through everything. We love you guys.

Off to bed - long day Saturday

A big thanks to Buddy, Amanda, Ryan, Derek, Jumoke, Pili, Charles, Megan, Ruben, Esther, Ashley, Matt, Julie, John, Tamra, Jana, Kezia, Naomi... your help providing materials, ideas, muscle while we packed everything up and loaded the trailer has been such a blessing to us. All we have to do now is wake up, take our last few items down to the truck and drive off. We had a nice meal at El Pollo Rico (which we're going to miss so much since it's so close and sooo yummy) and then we watched just a little TV and talked. Then our great friends presented us with a scrap book full of pictures from our two years here, and goodbyes from many different people from church. We looked at the pictures, but didn't really get a chance to dive into it. We'll enjoy reading it when we get home to Texas. Thanks again to everyone that had a hand in this wonderful gift.

Our time here has been awesome. I can't believe that we're leaving and that one year has passed since my brain surgery! Time has absolutely flown by. It just ticked past midnight and now it is March 3, 2007. One year ago right now my parents and Holly's mom were here and I was trying to get to sleep knowing that I would undergo brain surgery the following morning to remove my tumor. I didn't know it at the time, but the months following the surgery would be the most trying of my life. But here I am, one year later, driving off on one year to the day of that life changing day. Sometimes, it never seems like it happened. But every day I look in the mirror and I see the scar and my thin patch of hair from the radiation. It reminds me of what happened, and how far I have come. But I didn't do it alone. My wonderful wife, Holly, was there by my side every single day. She is my rock. And our family from Grace lifted us up during that time too. God gave you to us so that we could get through that time. In turn, we gave something back to others that are able to take our experience and somehow get through something in their lives just a little bit easier. I'm happy that God used me for that purpose. I will go through it again if I need to, because I feel I have helped more people having experienced this than anything else in my life. And it has made me a better person in the end.

The next few months will be a challenge for us, but it's nothing we won't be able to handle. But for the next 40 days, I'm on vacation... my first in two years. Man, am I looking forward to it! Lastly, Holly shared with you that I am on the selection list for a promotion to E-7/SFC in the Army. This is great news since it means more dinero and it just feels good to know that I made the cut. I had to take what the Army calls a DA Photo (Department of the Army Photo) and submit it with my promotion packet. I thought I'd share it with you. Good night.

Back on the blog!

I have been off the blog quite a bit here recently. With Holly's dad getting sick and having to pack, there hasn't been much time for anything else. Remember that post I put up two weeks ago on my birthday? We got released early from work into a hellacious commute home. Well, that night we were expecting freezing rain, instead we got about seven hours worth of sleet! Pure sleet.In the end we got about four inches of ice. It was like a white Slurpee everywhere. Work delayed our starting time two hours and we trudged back in. The sleet storm was amazing. It was so windy that the sleet was blown onto the windows - it sounded like someone was literally filling up a bucket of pebbles and tossing it at the window, filling it up and tossing it, over and over. It was so LOUD! I didn't sleep very well at all - it was a very interesting night.

Later that same week we found out about Holly's dad's illness and we decided it would be best for Holly to get to Texas to be with him ASAP. At the time, we didn't really know what the outcome would be, so I rounded up a whole bunch of our friends and we did some big time packing all day Saturday. He was doing better on Sunday and I slacked off on the packing, but he declined again on Monday and we picked up the packing again. I think we ended up packing up about half of the apartment. I hated to admit it, but I decided that we should pack more than less "just in case."

Last week we packed again on Saturday and then little by little throughout the week. Pictured above is one of the piles of boxes in the dining room (forgive the quality of my phone camera.) The pic on the right is the office. We got a nice surprise six hour long snow last Sunday that laid down about four inches of thick white wet snow. It was beautiful, but then it started to rain. We were tempted to go out and play in it, but then we'd just end up sloppy wet - not so much fun. We hit full stride this week and as you've read from Holly's posts, it's been just nuts. I think we got ahead of ourselves today and there are still things than need to go into boxes, but all the boxes are sealed up. We'll have to figure out how to fix that tomorrow.

After the load we ended up feeling leery about whether everything is going to fit or not. If it doesn't, we might have to ship some boxes home - that would stink. Here's a shot of the mock load in the apt - what a pile, eh? Anyway, we're tired and ready for some shut eye. We're supposed to get some pretty serious rain tonight - I just hope it doesn't keep me up. By the way,Tamra's mom is doing a little better. She's off the breathing machine and able to converse a little, but she slept for most of the day. They just don't know how extensive the damage is to her brain yet. She need to get more rest before she can really be evaluated. Please continue to pray for them. And as Holly said... more tomorrow.

Good News All Around

Well, we have lots of good news from all around. As you know, my dad went home from the hospital Tuesday afternoon. My mom says he cat naps all day, but he needs a lot of rest. I talked to him yesterday and he says he and his legs get tired very easy. I'm a tad confused with this, but they sent him home with no medications. I asked my mom many questions regarding this but she didn't ask upon his release about meds. Just seems strange to me that a person who just had the serious surgeries and close to death experience that my dad did would be released from the hospital without medications. Anyway, my sister Heather and niece Elizabeth are there today and tomorrow to harass my dad and ensure he's doing what he's supposed to do.

We spoke with our friends John & Tamra Rich this afternoon and Tamra's mom Cheri is doing much better. She is awake and alert and talking some what. She is still heavily sedated and needs lots of rest. Please continue to pray for her.

Roger found out from his First Sergeant this afternoon that he has been added to the promotion selection list for Sergeant First Class. Which means it's pretty much a done deal that he will be promoted. Perfect timing. He was very excited to hear this news. He was waiting for this information for a while. He submitted his packet at the end of January and hadn't heard anything until today.

Okay, I'm getting the look from Roger. I need to get off this computer. We have a few more errands to run before the rain hits. Tonight we will finish finalizing the packing and hopefully mock the trailer load in the dining room. Please pray we get everything done and it all goes smoothly!