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!

No News

I didn't get a call from my Oncologist today. I called his office, but there was no answer. I think he never made it in to work! I wouldn't have wanted to work today either. Today was beautiful here in DC! I had a hard time waking up today and getting going. I think it may have had to do with the new meds. Buddy came over and encouraged me to get out of the apartment, so I did. We played TopGolf with Tamra and Zach. I have never even swung a club at a golf ball before in my life, so it was a new experience for me. Needless to say, I stink. I did much better at miniature golf afterward.

Tonight we grilled some steaks over at Buddy and Amanda's with two of their friends. Then we played some Yahtzee, which I've played in the distant past, so it took me a while to relearn it. I had a good night. I'm going to get ready for bed and see if I can fall asleep at a decent hour tonight.

All Day at the Hospital, New Meds

Today was a pretty stress free and straight forward day. I got up, headed to Bethesda NNMC on the metro and saw my Oncologist for my 1130 appointment. It was a fairly easy visit. He had a resident there learning today so I got the help teach strength, balance and memory testing. They do this every few visits just to gauge my level and see if there any differences from last time. I think my strength gets better each time, but the memory stuff stays the same. I'm not getting any younger!

After that, I grabbed a quick bite and then headed to my Neurology appointment. We discussed my last seizure and also talked about the strange twitches going on around my right big toe and the side of my foot. For about two months before the seizure, the activity was so pronounced that I would lay in bed and could feel it. Sometimes it would keep me awake for a while. Then, after I had the seizure, they seem to have slowed down quite a bit. He was interested by this and seemed fairly certain that these were, in fact, tiny focal seizures occurring throughout the day. I thought it was just my brain confused and healing doing that, but that is basically a type of seizure, I guess.

We did more strength testing and he also seemed satisfied with my improvement, but wanted to control the seizures. I am at the maximum dosage for Keppra at 2,000mg per day. He also told me that Keppra is good at controlling generalized seizures, but not so good at focal seizures. I tend to have focal seizures that progress to a generalized seizure. So, he waded through the list of additional medications that he could add and finally ended up at one called Tegretol. I’ll be taking 400mg per day to start. I took my first 200mg tonight and feel okay – a little drowsy – which is a side effect. He said that it also might make my stomach feel upset for the first few days, but it should pass. It’s feeling pretty good so far. The only issue with the Tegretol is that it can increase liver enzymes, so he’ll need to draw levels to make sure that I’m getting enough of the medication into my system and that my liver enzymes don’t increase to a dangerous level. He also wants to do an EEG on Tuesday, just to see what kind of activity by brain is creating. He mentioned that there may be some scar tissue or something else in my brain that is irritating it and causing these seizures. It is apparent that something in the part of my brain that controls my right foot around my big toe is irritated. He said that if I was interested, they might be able to pinpoint it in time, and possibly go back in to remove the irritation. Hmm… we’ll cross that bridge when we get to it. He was also happy that I had an MRI scheduled for later in the afternoon and would use the data from the EEG and MRI to compile the NARSUM for my MEB. He said that he’d have a better idea of what to include in the NARSUM, but was not going to do it until I was stable. That means that next week, WRAMC will only transfer me into their system, I’ll have to move there and then will have ongoing appointments until the doctors think my condition is stable enough to begin the board process. In addition, my doctors don’t want to see me moved to a different location – they would prefer that I stay close to them for my care during the MEB process. My Neurologist said, “Why start you over again with a new doctor? That’s just stupid.” I agree. I hope WRAMC agrees.

After the visit with him, I went down to MRI, and after a short delay due to an emergency MRI, I had my time in the machine and actually fell asleep inside the magnet again. I didn’t have a chance to get a CD of the images because it was after 1800 when I finished, but my Oncologist is going to call me Saturday morning with the results. I’ll pick up a CD on Tuesday when I’m there for the EEG and will try to share them with you.

After the MRI, I high tailed it back to Clarendon and joined up with Amanda, Buddy, Ryan, Zach (John’s brother) and Tamra for dinner to celebrate Tamra’s getting out the Army. We went to The Cheesecake Factory and ate a lot of food and of course, dessert too. Buddy and Amanda gave me a ride home and hung out for a while with me. All in all – another good day. I’m looking forward to a weekend of rest and beautiful weather here in DC. I’ll let you know what my Oncologist says about the scan results tomorrow.