Apr 30, 2006

MP3 File from Sunday now available

The MP3 file of the testimony that Holly and I gave today is now available at our church's website: http://www.trygrace.org/message.html. Look for the message titled 04/30/06: Finding Peace in the Midst of Worry under the section How God Meets Our Deepest Needs. Click the headphone icon to download the MP3 file. You may need to right-click the icon and click Save Target As and save it to your desktop. It's from the second service, which is a good thing since we were a bit more relaxed and I think it went much better than the first. You can also download the sermon notes and study questions by clicking the document icon. BTW - the picture we are talking about where I looked pathetic is this one. Let us know how you enjoyed the message - leave a comment!

Welcome GCCers

Just a quick welcome to those of you that heard the message on "Worry" at Grace Community Church this morning. You're welcome to start reading right here on this page, but for more information, I would suggest scrolling down the page to the Previous Posts section and start reading from the bottom of the page under the 2006.02 entry. That will take you all the way back the the beginning of our saga. Thanks for visiting and feel free to leave a comment or two!

For my constant readers: Holly and I were blessed to be asked by one of our pastors to assist him with this message by talking about our experiences over the past few months. An MP3 file of the message should be available later today. I'll get a copy of it posted and give you a link so that you can give us a listen. I have to admit, I was a bit nervous, but the second service was easier than the first. I also noticed today that if I am a bit nervous, my right leg shakes a little bit. My left doesn't do it, just my right. Must be a Central Nervous System (CNS) thing that I hope will go away. Check back for the link later!

Apr 29, 2006

Radiation Monday

I went to Bethesda NNMC two Fridays ago for a CT and last Monday for an MRI. They will use both images to create a 3D representation of my brain so that they can accurately shoot the radiation into the tumor area and avoid other stuff. They made this mask of my face that will be used during every radiation session to keep my head in the same position for every treatment. This way they can hit precisely what they want to hit every single time. The mask has little metal balls on it - I guess they are markers. They made me wear the mask during the CT so that they could match the markers to my head and I suppose they match the MRI to the CT using my bone structure since I didn't wear a mask during the MRI. BTW - I'll be posting pics of my brain post surgery from that MRI soon. Anyway, it seems to me that I am in good hands. Our friend, who is an Oncologist at Walter Reed, keeps reassuring me that this will be easy and that I'll be much better after it's over. Of course, I believe him and I know that this will make me better for sure. I'm just not looking forward to the side effects. The ones that I will most likely experience are a change of hair color, thinning of the hair of hair loss right above the tumor area. And during the 5th and 6th weeks I may begin to feel very fatigued. Very rarely the radiation can cause a condition called necrosis, which is the killing of cells. I plan to continue my therapy and exercise during the treatment to combat any possible brain tissue loss. I figure that if I continue using all my limbs, my brain will continue to figure out how to get around any weak spots.

My physical therapy is going very well. I continue to get stronger and my foot is moving more and more. My toes can assist with balancing on my right leg now. We're still working on my ankle movement, it is still not moving enough for me to walk comfortably, but we'll get there. Another thing that we're working on is the rotation of my leg from the hip. Basically, while standing, keep your heel put and rotate your foot clockwise or counter clockwise. These two actions are still weak, but my PT, Jess, is on it and it will be stronger soon. Well, I have rambled on enough for today. It is a beautiful Saturday afternoon here in DC. We're going to enjoy it! BTW - It's good to see Holly on the blog again! Check out her post below if you missed it.

Apr 28, 2006

One Year Today

I moved to Arlington, Virginia on April 29, 2005. Today is April 29, 2006, so I have been here exactly one year. I didn’t have to move to Arlington. I could have stayed in Austin, Texas by myself for another year without Roger. I don’t know if I would have made it another year without him. I was going crazy by the third month so I’m pretty sure another year would not have been good.

I was ready for a change and boy did I get it. I was ready for a change of scenery. Don’t get me wrong. I love Austin. It’s my home and if I had my choice, I’d live there the rest of my life. But six years at the same job and a year without my husband, yeah, I was ready for something to say the least. I was eager to move and excited about moving to the capitol of the United States. I had been to DC many times before, but to live there was definitely going to be cool. And an adventure.

This year has definitely been an adventure. But I have loved every moment of it, the good times and the not so good times. For me this year has been another testimony to God’s love and faithfulness. I used to think about my faithfulness to him all the time or my lack of faithfulness. And all I’ve been able to think about lately is how faithful he is to us. Every promise in the Bible, he has kept. Every command he has given, has been true. He loves us so much and wants the best for us so bad.

I had to trust him through what were nearly hundreds of applications and three months of waiting for a job. It was hard at times. I thought I was inadequate or something was wrong with me. I had to fight those thoughts and choose to trust him. He had the best job waiting for me, but I had to wait for his timing. I love working for my company and my boss. I love the work I do and what I am learning. My boss especially has been a true blessing through my health issues last fall and Roger’s recent health issues. I couldn’t have been more blessed. I’m glad I waited.

I had to trust him through four months of not-so-fun gastrointestinal problems before relief was found. I cried and cried out to God a couple times because I didn’t think I could keep going through all the life and sleep altering medications. Months of trying one topical treatment to having a second exploratory procedure and trying a different medication. It was tough, but he got me through it. And so far, the treatment I’m on now seems to be working great and I was able to get my “normal” life back. It’s almost as if nothing was ever wrong with my health. That’s amazing.

I had to trust him knowing something serious was going on in Roger’s brain until we found out the next week he had a tumor. By then, trusting God was almost second nature. I guess when you go through enough stuff, you eventually get it. Many people have said that we have been so strong through this and they don’t know how we did it. We can not take any credit for how we reacted during this time. We trusted God because he has always come through for us and because of that he gave us enormous peace and strength.

Believe me, this brain tumor, craniotomy, temporary paralysis and now radiation is a big deal. But for Roger and me it’s almost been easy. Just another speed bump on the road we call life. I wouldn’t choose this route again, but whatever route God has us on, we’re ready for the road trip. I’m sure there’ll be a few missed exits, some wrong turns at Albuquerque and even some speeding tickets. But hey, they don’t call an unusual or exciting experience adventure for nothing.

Apr 27, 2006

Orders!

I went to work and found out that our orders have been cut! We'll be staying in the area through September, at least. Thank God! Tomorrow I have PT and need to get a lot of paperwork faxed off to work, banks and such. Now all we have to deal with is the radiation and my recovery!

Apr 26, 2006

Back to work

Today is my last day of convalescent leave -- tomorrow I head back to work. I'm going to try to get there before noon so that I don't have to stay too late as I'm only allowed to work half days for now. I'm excited to get back, but I know that my days are going to get crazy next week with physical therapy three days a week, radiation every day and work too. I'm sure I'll be doing lots of paperwork, email checking and talking with folks. I'll let you know how it goes. Off to bed!

Apr 25, 2006

New Video: First Finger Movement

Hi y'all - we have unearthed some never before seen video from the vault. Well, actually, it was on Kezia's camera and I forgot she had this. She was finally able to get a copy to me. This is video taken on Tuesday, March 14. The day after Cassie left and the morning that I was transferred to NRH. Kezia came to spend some time with me and I was trying to get my hand to move by throwing the brain squishy ball into it. We also tried to run a towel through my hand to see if I could grip it. I thought I saw movement and tried to move something on my own. Low and behold, my thumb moved! This was the very first movement in my arm and you are seeing it as we did for the first time. I was very surprised and relieved, as you can tell. It was a lot of work and took lots of concentration just to get it to move that little bit. You'll be able to tell how much work it took for my by my reaction, grunting and body movements. Thanks to Kezia for being quick on the draw with the camera and thanks to all of you for checking in. See the video below or click here to watch it.

Apr 24, 2006

Tofurky?

We had a great weekend. It rained almost all day Saturday though. We did manage to get out and have lunch with Su and Kezia. We went to this Italian restaurant called Tutto Bene. They are an Italian restaurant but also serve Bolivian food on the weekends. We actually ordered from the Bolivian menu and everyone got something different. I think everyone was quite pleased and we each tried each other’s dishes. I had my leftovers yesterday and they were wonderful. After that, we went over to the Java Shack for a pick me up and then to Whole Foods where Holly was able to find her anchovy paste for her excellent Cesar Salad dressing. Here’s a phonecam shot of the ladies enjoying their beverages (click it for a larger version.)

While roaming around the Whole Foods, I noticed something that reminded me of a "vegetarian" friend back in Austin, my former co-worker and good friend Jill. There’s something about the name Tofurky that just reminds me of her… Maybe it was the way she used to say it: Toe-FUR-key! We used to have many a conversation where I would try to talk her out of being a veggie-head – she would say things like, “Why eat meat when there are great substitutes like Tofurky?!?” Why? Because that’s just nasty. I’d like a steak, medium-rare please.

Apr 21, 2006

Sim? CT!

I found out this morning that my Radiation Simulation later this morning is actually a CT scan. Funny name for a CT, IMO. I'm off to retrace Cassie's steps to NNMC via the metro. This is my first time taking the train there. I think I'm going to take the cane along so that I can score a seat when I get tired. My right leg does get tired, but people won't give you a second look without reason. I need a fancier cane - this geriatric silver metal one I have looks nasty. Maybe a wooden one with flames? Coooollll....

Apr 19, 2006

Progress!!

Oh boy – I finally made some progress. It is late and I’m tired, so I’m gonna keep this short. Holly dropped me off at the Bolling AFB clinic a little after 8am and I spent about two hours there trying to get the form filled out by my doctor and also to get my leave extended another week and a profile to prevent the Army from making me do physical activity until I get stronger. Someone from the reserve office at work was coming to the clinic so they gave me a ride back to work. I got to work and had issues getting a new badge since mine expired. The computer system was down, so I settled for a temporary badge and will get a permanent one when I go back to work. I made it upstairs to the reserve office and presented the paperwork to the person that is going to move my extension packed forward. This person then called a colonel somewhere and read them the letter my doctor wrote. From what I heard, I gathered that this person is the one that insisted that we have this medical paperwork included because the colonel basically said that it looks like I am going to be fine and nothing medical needs to be included. This wasn’t enough though… the person then went to their boss, another colonel, who pretty much said the same thing. So, this medical paperwork that I have been running around like crazy for, not getting rest, stressing out and hampering my recovery was never required by anyone but this person. After hearing that it is not required, this person then said that I needed to have someone in my chain of command email them to say that they are aware of the situation and that they approve my extension request. To me, it looks like this is not a case of covering all the bases or taking care of me, but rather an attempt to cover thy rear. It ticks me off that everything was delayed two weeks because of one person, but they said the packet will go forward and will be approved in a few days. They see no reason it should not be approved. So, with that said, everything looks good for us to stay in DC for an additional 180 days past May 2. That will probably keep us here through September 2006. I’m going to fill out the lease paperwork tomorrow and fax it back so that we can keep the apartment. It is a relief to know that everything is going to work out fine – I was starting to get very stressed about this whole situation. I’ll let you know when we get the final orders.

With that resolved, I did go into the office today and it was good to get back in there. I am scheduled to return to work on a limited duty basis starting next Thursday, April 27. I’ll most likely start out working half days or from home depending on by current projects.

I have a simulation scheduled for Radiation treatment at Bethesda NNMC on Friday and an MRI on Monday to help with the Radiation planning. I’ll probably start Radiation in May. When that starts, I think that I’m going to go to Physical Therapy in the mornings, go to work, and then go to Radiation in the afternoon. It is going to be busy, but it will only be for six weeks and then we should be out of the woods with this tumor! Come July, things should slow down.

Also, we got the pathology report from AFIP confirming the diagnosis of the tumor. Click the images below for larger versions so that you can see it for yourself.


And on a lighter note, here’s a shot of me and Dr. Rosenbaum at his office on Tuesday. It sure was good to see him again.


And lastly, I was so tired today after getting home from running around that I got home, sat on the edge of the bed, called to cancel my physical therapy appointment, laid back with my feet still on the ground and fell asleep. I was exhausted! I wonder what it’s going to be like when I go back to work.

Again, thank you for checking in and praying for us. I’m feeling a lot better today and I hope I can relax and concentrate on resting for the next week now that this paperwork is out of the way. Just pray that it is approved and keep on praying for my foot! So much for a short post.

Apr 18, 2006

Paperwork soon and More doctor visits

Today was great but the day did not get us much closer to a firm word on whether or not we are staying or not. Holly and I made our way up to NNMC to visit with Dr. Rosenbaum for the first time since my discharge over a month ago. Our visit was good and he was very impressed with my recovery and progress. In fact, many of the people that worked with me are impressed! He answered a ton of questions for us and also talked to us about the actual procedure. I asked him a lot of questions while I was in the hospital, but I can hardly remember the answers. In fact, I am learning that I don’t remember a lot of what went on while I was at NNMC. I guess most of that was due to Decadron, the steroid that I was on to reduce the swelling in my brain. Apparently, I was very open talking about bodily functions and some people saw more of me than they ever thought they would since I was very hot during most of my stay. Enough about that…

Back to the visit – There is quite a bit of hair loss along a half inch wide strip following the incision on the top of my head. I asked if it would ever grow back and he said they really don’t know. I guess I’ll have to wait and see on that one – we’ll post a picture soon. Also, the incision itself is still a bit crusty, but he said that is also normal and that it looks normal and is healing well. We got the pathology report from AFIP and we’re going to scan it in so that you can see it for yourself. I am happy with the findings – they agree that it is an ependymoma. I am also going to start tapering off of Keppra, the anti-seizure medication. I should be off of it in three months if all goes well.

Lastly, now that I am out of the hospital and doing much better, we went back to some of the radiology reports from a chest, abdomen and pelvis CT from March 2, 2006. Here are two of the findings that we are going to look at further (text is from the report):

  1. The pulmonary parenchyma is remarkable for an ill-defined opacity adjacent to the left ventricle on image #45 in the medial aspect of the lower lobe. Recommend radiographic follow up.
  2. On image #116 there is a spiculated peripherally sclerotic lesion in the superior aspect of the left hip. In the setting of probable CNS malignancy, recommend dedicated radiographs of the left hip and bone scan for further evaluation.
Basically, they saw something opaque in my lung and want to look at it further. I can barely see it in the image. See where the arrow is pointing? Click the image for a larger version.















And, there is obviously something in my hip. Click here to see all three images.


Who knows – more testing will tell what it is. I’m not too worried about either. And also, this weekend, while administering a self examination of the jewels, I noticed something that I can only describe as a very small semi hard pebble in my right scrotum. I could be freaking out about this one because I can’t find it now, but we’re going to check it out just in case. So, I managed to get three future doctor visits out of one… how fun. Overall, the visit was excellent and we’ll see him again in a few months… but really – probably sooner than that since I’ll most likely be there quite a bit in the next few months.

We walked over to Radiation/Oncology to make a future appointment, and Dr. Smart agreed to see us! That was quite a surprise, but it was worth the visit. I have an MRI scheduled for next Monday at 1345 to help them decide how to best treat me. More on Radiation some other day. Lastly, Dr. Rosenbaum and my PCM, Dr. Abbott, spoke this morning about my paperwork issue. Dr. Rosenbaum advised Dr. Abbott that she is responsible for the paperwork. So, Holly and I went off to have some lunch at CafĂ© Asia and then went off to the clinic at Bolling AFB to pick up the paperwork. We got there and they were surprised to see us. We waited for a while and finally got to meet with Dr. Abbott. I again reiterated to her the importance of getting this one page form completed. She asked us a lot of questions and wanted to speak to the Radiation doctor before filling out the form. She said she would have a draft ready in the morning and we are scheduled to be there at 0820 Wednesday morning. I also have Physical Therapy in the morning and I may have to cancel or reschedule it as I’ll need to hand carry the form right to work. If we get the form like I think we will, we should be able to get the packet submitted and processed before May 2.

Last but not least, I got a call today from the company that we are leasing the apartment from. They need an answer by the end of Wednesday on whether or not we will be staying in the apartment for a few more months. This put me in quite a predicament since we still didn’t have the form. We should have an answer on the form and the apartment by noon tomorrow. Please pray that the form is completed, can be submitted and approved quickly. That’s all for now. I can’t wait until I can stop dealing with paperwork and can continue just getting better.

Apr 16, 2006

Happy Easter!

I know I said I would post pictures from last week over the weekend, but I just was never able to get to it. Monday and Tuesday look like they are going to be pretty busy days with lots of appointments too, but I’ll try to get them posted soon. Keep checking back.

I hope you had a great Easter! Holly and I went to church, and then had a great lunch with about 18 friends at Silver Diner. Then my good friend Ryan and I hung out for a while and had some coffee at the Java Shack. I love iced coffee on a warm spring day! It was nice to hang out with a good friend and do something out of the house. I feell like life is getting back to normal!

After coffee, Holly and I went over to Amanda’s for Easter dinner with a few other folks. We finished off the evening by playing Uno and Spoons. Both games were good Occupational Therapy for me!

I have been trying to hold my leg out in front of me as if I am taking a step and trying to raise my foot at the ankle so that my heel hits the ground first. Currently, when I walk without a brace, my foot just clomps flat to the ground since I can’t control my ankle. Today I am finally able to move my foot at the ankle just a bit in this position. I think I’ll be able to walk comfortably without a brace very soon. I’m very excited about this as this is a big step in my recovery; to be able to walk without a cane or a brace comfortably. I am working hard toward it and can’t wait! Keep praying for the leg and for the paperwork to be signed Tuesday! Have a great Monday.

Apr 13, 2006

Incredible Toes!

Wow! What an incredible day! Kezia and Su picked me up for lunch and we ate at a great Italian place in Clarendon (Can’t remember the name.) After that, Kezia and I went back to NRH to visit a few friends I made there, to return their AFO and to say hello to some of the staff. I was also able to show off my new ability to pretty much walk without a cane! Needless to say, they were impressed with my progress only being home just over a week! Kezia took some wonderful pictures that I’ll post over the weekend with great captions. I’ll let you know when I get them up. It was really nice to see all those wonderful people again.

After that, Kezia dropped me off at Holly’s work to hang for a while. I took my shoe off to let it relax a little since the new AFO is a little tight, and as I was sitting there, I was messing around with my ankle again, trying to get it to move more. As I was sitting there, thinking… mooove ankle… my toes moved! ALL of them! (My friend Irene reminded me of that scene in Kill Bill 2 – funny how similar.) They do this strange wave motion, it’s all I can do with them, but for crying out loud, I wasn’t even trying and there they went! It was quite a shock to me and very exciting at the same time. I am almost able to move my ankle while I am standing – just my toes come up now. But another development I discovered – I can stand on my tip toes for quite a long time now and I can also stand and raise my foot back, bending at the knee to bring my foot almost to my rear. I don’t think I was able to do that earlier this week. All these little things just tickle me to death. I just love the improvement that I see everyday. It really shows me God’s healing power. So, back to the evening… we headed off to Jaleo in Crystal City to have dinner with one of Holly’s coworkers, Janine. I’ll have a pic of them up this weekend too.

Tonight I finally managed to complete and e-file Holly’s Virginia state taxes and our Federal Taxes. It sure feels nice to have those out of the way. Her state taxes threw me for a loop, but thanks to TurboTax online (free for military thanks to MilitaryOneSource.com) I completed them and scratched that off my list. With the taxes done, I can go to bed now. I started working on them and decided that I wasn’t going to go to bed until they were done. I hope I didn’t make any mistakes!

Okay… I’ll post the pics from today this weekend. Check back soon to see them!

Apr 11, 2006

Another buck passed!.. and chance of a move?

Ugh. That’s all I have to say. It has been a heck of a day. After my last post, I washed dishes, cleaned the humidifier, made some more phone calls and took some phone calls. I did get a call back from my doctor at Bolling and they basically said that my neurosurgeon would have to do the paperwork. Unfortunately, I won’t see Dr. Rosenbaum until next Tuesday, so the paperwork will sit on a desk until then. If we cannot get the paperwork completed, two things might happen: we’ll have to pack up and head back to Texas, or I’ll be transferred to a medical hold company at Walter Reed. Both of those will require us to move out of the apartment during the last weekend of March. If you can help, please keep Saturday, March 29th open, just in case. I’m hoping we won’t have to do that, but we need to be prepared.

I do understand that if we get the paperwork squared away, it can be pushed through before May 2 for approval. This is the goal. My branch chief at work is willing to get us to that goal and wants the best for me and Holly. Even though I have not interacted much with them, my work has been extremely supportive and helpful during this entire time. I appreciate their willingness to do what they can to get me back to work to begin to lead a normal life again, while looking out for my back. Thanks again guys, you’re the best.

So, I went ahead and cancelled the appointment at Walter Reed for Wednesday, because I think they are just going to give me the run around again anyway. Please pray that all this works out and the paperwork is approved. At least I can stop worrying about this for the rest of the week and relax and focus on my physical therapy and the associated exercise. Speaking of… I just finished about an hour of exercises and my right hip it exhausted! I am able to move my right ankle much more, with less thought and also up against gravity! This is very exciting to me. Hopefully soon I’ll be able to use it while walking and I can toss the AFO.

My arm is growing stronger everyday. Unfortunately, with all this running around, I have not been able to do any exercises with it. I know that I am typing better, but I keep missing keys or double tap keys. Thanks goodness I use Word to type these and then post them to the blog. I am able to write a little better, but it is still a little shaky. Just practicing that will help improve writing – hopefully I can do that tomorrow.

My leg is also getting stronger. I am finally able to get into the tub by just stepping over it and I don’t have to sit on the transfer bench and swing my legs over and in. And I am also able to get into vehicles much easier too. The newest development, beside the ankle, is my new ability to extend my leg out straight from being bent at the knee while my leg is resting on the bed or sofa. For a long time I had to hook my left foot under my right foot and drag it straight, now I can do it myself. It is amazing – the little things that we take for granted in life.

My diet has returned to normal and I do not have to take any acid reducing medicines like I was in the hospital. I’m only taking my anti-seizure medication, Keppra 500mg, two times a day. I was able to do about 30 sit-ups the other night pretty easily. I didn’t want to kill my abs, but they hurt anyway. Push-ups are still hard, thanks to my arm not being 100% yet, but I was able to do about 25 on my knees before I decided to stop as to not overdo it. I’m getting better and stronger everyday. BTW – the weather here in DC has been absolutely fabulous! Highs have been in the 70’s and it is nice and dry. I wish I could get out and enjoy it, but I’ll have to settle for opening all the windows and feeling the breeze through the apartment. Holly and I plan to start walking after work to increase my stamina – I’m looking forward to those when we can find the time to do it. Thank you all for your thoughts and prayers. Keep on praying for that pesky paperwork and for my leg to continue to get better!

Only spare change passed thus far..

I don’t feel as if though I’ve been productive today. I did a lot, but still have no results. Rex picked me up at 9am and we headed over to Bolling AFB to see my doctor. After they called me to the back, I explained the situation and the 1LT was very sympathetic and left the room to ask some questions of her superiors (I guess.) After returning twice for more information from me, an hour and fifteen minutes had gone by. Since she is now my primary doctor, she had a lot of questions about medical review boards and such – basically, why hadn’t one been conducted yet. The truth was, I had no idea what she was talking about. I don’t work in the medical field – if this stuff was supposed to happen, someone else was supposed to get the ball rolling. Anyway, she said she would make some phone calls in the afternoon and promised to call me by 3:30pm. She did give me the numbers of the folks over at Walter Reed in the medical evaluation department, but when I called, I learned that at 1pm, everyone was at lunch and I should call back in an hour. If that happened at most places where I have worked, someone would have been fired. I feel like I am wasting time trying to track someone down to fill out this sheet of paper rather than exercising like I am supposed to do to get better! Eeesh. More later…

Saturday at Cassatt's Video

Here's the video I promised from Saturday night. The video quality is not very good, low lighting and wrong settings on our camera. But the sound quality is pretty good and will give you an idea of how good these guys are. The next performance is on Saturday, May 13th. So come out if you can.

Click to watch: Saturday at Cassatt's or view it below.

Apr 10, 2006

Pass three bucks?

Isn’t paperwork a drag? I found out Friday that I needed to get a certain form filled out by a military doctor. I emailed my surgeon that afternoon and he was really unable to help since the day was almost over and he was going on leave the following week. I decided I’d get up really early this morning (Mon) and try to make some appointments with military doctors to get said form filled out. First, I called my primary care doctor at Bolling AFB at 7am. She was already booked up for the day but had an appt next week – too far out. I called the Pentagon and snagged an appt for 1:20pm. And, just to be sure, I snagged an appt at Walter Reed for Wed, just to cover the bases.

I walked to PT today with the old AFO (ankle brace – Ankle Foot Orthodic, I think) and NO CANE! It really was pretty easy since it was early in the day and I wasn’t tired. I brought my new AFO in that was delivered Friday afternoon to tell them how uncomfortable it is. They saw where it was uncomfortable, but urged me to call the folks that delivered it to me to see if they could adjust it first. That seems reasonable, but there sure is a lot buck passing going on in the medical field!

PT went fine; we did more exercises and more electrozappotherapy for the ankle. I got back home, ate a quick snack, and jumped on the metro, without a wheelchair, for the first time in weeks. The ride was smooth, but the walk to the clinic was long. I got there, checked in and they called me back quickly. A PFC took my vitals and I told him about the form and gave him a copy – he left and soon a female doctor entered quickly and quite rudely and to the point asked me, “Why isn’t Bolling doing this for you?” Well, good morning ma’am, how are you today, I thought to myself. I went on to tell her how the last time I went to Bolling to get an Army form filled out, they balked and said I had to go to an Army facility. And I also explained the timing issue to her. She left and came back and said her full bird boss said they could not do it (more buck passing.) So, I left and headed home. When I got home, I went ahead and looked online to see if I could schedule an appt with my doc at Bolling and lo and behold… the Internet can be useful! I booked an appt online for Tue and even managed to talk Rex into taking me there. I’m looking forward to more stares from the docs there. And also more, we Air Force docs can’t fill out an Army form (another buck?) At least I’m trying, right? This is also why I’ve scheduled the appt at Walter Reed – an Army hospital, they are my fall back. I figure that between the three, I should get someone to help a good soldier out.

So, what does this all mean? The paperwork to keep us here is stalled until I can get this form filled out. We have a little over 20 days left. If we don’t get this stuff in soon, we’ll need to look at transferring to a medical hold company at Walter Reed, which means we’ll have to move out of the apartment and life will be hell, or we need to head back to Texas. I don’t want to do either of those. I want to stay where we are, get physical therapy, get radiation, get better, and get back to work. Please pray that the paperwork hustle is resolved soon and that our request is approved. I know it will happen though, because our God is good.

Apr 8, 2006

Saturday, April 8th Recap

Well, we had a pretty restful day today. Roger and I both slept in. Roger slept three more hours than I did. I just couldn't sleep anymore. But he needs as much rest as he can get. Then Roger cooked us a late breakfast (or lunch) of maple sausage, cheese and chive scrambled eggs and I almost burnt the toast. It was still edible. That's what I get for trying to do too many things at the same time. I was not paying attention to that toast. Then we headed over to Escape Day Spa and had manicures and Pampering Peppermint Pedicures. It was so rainy and cold that we decided to just go back home and chill out. We vegged out in front of the tv and caught up on some of our recorded shows. Then we got ready for dinner with friends at Cassatt's to see Ryan and Rex perform. Of course, as usual, the food was exquisite, the music awesome, the service unbeatable and the fellowship with our friends great. I posted pictures on Flickr from tonight. I am also waiting for my video to be approved on Google Video and as soon as it is, I'll send a link to it so you can see and hear the wonderful sounds of The Rex Parte.

Apr 7, 2006

Ankle? GO!

I was right! My ankle is moving!!! It’s not much, but it will start coming back more and more. That is what happened to all the muscles. It was a little at first and then more and more! I’m going to do a little exercise today and try to take it easy this weekend. I really want to relax before I kick myself in the rear again next week to get better. I’m going to look at my schedule and block out time to work on occupational therapy and exercise. I want to get better!! Please pray for me, okay?

Electrotherapy and Staying Longer

This is the post I mentioned in the AudioBlog I left late Thu night. I wrote this Thu night, but was unable to post it for whatever reason. Enjoy!

Can you say relaxed?? Last night I slept for ten hours straight! The most since over a month ago – it was fantastic. I also put in my contacts for the first time since the surgery too! I couldn’t get them in with my right hand, as my fingers were too jittery, but my left hand got them in just fine. It is nice to not have glasses sliding down my nose all day.

I met Holly in the lobby at 11am in the wheelchair so that we could head over to my physical therapy consult together. The trek there was interesting. I’m learning that most sidewalks slope downward toward the curb – not fun – makes your wheelchair want to move toward the street! I’m going to have to make the trek on my own tomorrow and then three days a week starting next week. I hope I can walk better by then.

The PT consult went well. One of my problems now is that I cannot move my ankle or toes at all. When I walk without a brace, my right foot clomps down flat on the ground. The muscle on the front of our lower leg, I call it the shin muscle, is not kicking in voluntarily at all.  It will bear weight, but won’t do much else. He suggested a technique I think they call electrotherapy. He attached these rubber pads to my shin and cranked up some machine. I could start to feel a tingle and just a little pain. He cranked it up even more and it felt like big time pins and needles running thru my leg. It was quite painful – but the muscle contracted and my foot rose at the ankle. We did this about four times, ten seconds on and ten off. I have to admit, for my first time, it was rather hard to tolerate. I had to tell him to turn it off. We did three more; ten seconds on and thirty off. It was interesting, but painful. He then showed me some exercises and also encouraged me to try to ride an exercise bike to get my legs doing something repetitive. I didn’t have time tonight, but will try to get into some type of routine next week. I need to work in time to continue some occupational therapy for my arm. I need to work on strengthening it and increasing my dexterity. I can’t write that well at all and really need to work on that. I also want to start working my leg muscles more. I really want to be comfortable with everything working before we begin radiation therapy.

With that said, now that the surgery is behind us and we have a long road of recovery and treatment ahead, Holly and I have finally submitted a request to stay on active duty in the DC area for an additional 180 days. I think it makes sense to stay here to continue treatment. Besides, I really want to get back to a familiar job and to continue to live somewhere I am comfortable with for now. I really want to get back to Texas, but we agree that this is the best course of action for us at this time. I really want to get back in my uniform and back to work. That will be a good day. We understand that we’ve submitted the paperwork a bit late, but under the circumstances, we didn’t really have a choice. Please pray that the paperwork gets processed quickly and that our request will be approved soon.

One last note -- remember the electrotherapy on my shin? After Holly and I went to the Commissary and PX, we came home and I was sitting on the sofa. I took off my shoe, ankle brace and sock and crossed my right leg over my left knee. I sat there for a bit and thought, “move foot… moooove.” The therapists at NRH sometimes tell you to move a part and then they lightly tap the muscle to try to stimulate it. So, I tapped my shin and thought about moving it… and it moved! I think it did at least… I was able to see movement and I felt the muscle and it seemed to contract! I tried it a few more times and it did it again. Now, I could be faking myself out by making it move with another muscle, but the therapist will be able to confirm if I’m imagining things on Friday. Please pray that all the muscles come back strong!

That’s all for now… off to my comfortable bed!

Apr 5, 2006

Happy Anniversary!

Wow, what a way to spend our third anniversary. I don't think we'll ever forget this one.

We started the day at 9:00 a.m. at Bethesda NNMC for a consultation with Radiation/Oncology. It was a bit of a shocker what they told us and not at all what we thought. It was a little hard on us initially, but after a cry and prayer, we felt a lot better about it and were more comfortable with the information we received. They are recommending 5 days a week for six weeks of radiation. Dr. Duelge, the radiation oncologist, would like to wait a couple weeks for Roger to improve more before starting. An MRI & CT would be done again in order to more accurately prescribe the dosage of radiation. Roger may experience weakness, tiredness and similar actions as before the surgery towards the end of the radiation treatment. And of course, there's always those rare risks that there would be permanent damage to the area of the brain that is radicated therefore causing permanent loss to the body in the corresponding area. Dr. Duelge is also going to present Roger's case to the tumor board next Tuesday and do his own research in regards to doing the treatment before full recovery from surgery. Normally radiation is done about a month after surgery, but since Roger still has weakness in the leg, he thinks it would be better to wait. We agree. Roger would like to know that movement has returned to the area before taking a risk of permanently damaging the area and not knowing what caused it.

So there we are. As we mentioned before in the blog, the neurologist at NRH is questioning the pathology. Due to Roger's age, the location of the tumor and other factors, he and another doctor believe the tumor is not an ependymoma, but a meningioma and is recommending we get a second opinion of the pathology results. Of course, the military won't pay for that so either we have to pay for it out of pocket (over $2000) or find a way to have it done pro bono, which we might have a connection to get that done. And we were told today that since it's such a strange diagnosis, someone is looking into writing about it in some medical journal. Roger may know more details about that, but I thought that was interesting. Most ependymomas occur in children and the majority of patients are diagnosed before the age of five years. I'm sure most people would prefer not to be the topic of study in a medical journal, but if it helps doctors help patients, we don't mind. If we hear anymore about that, we'll let you know.

We were there until about 12:30 p.m. and then had lunch in the mess hall before we headed over to Neurosurgery. Navy food is good and cheap. Roger and I ate a main entree and sides each for $3.25 total. She didn't catch Roger's main entree, but it would still have been under $5. I had baked cod with steamed rice and mixed vegetables. Hello! I told Roger we could eat there anytime he wanted. We were in Neurosurgery for a while making appointments and getting paperwork before we left at 3:00 p.m.

We didn't take the wheelchair with us and Roger walked the whole day. Needless to say he was tired and we went straight home. But he did really well walking all day. We were going to start taking walks every night to build up his stamina, but with all the walking we did today, we didn't need to go for a walk. He even did some exercises and stretches in the exam room while we waited.

We had Italian delivery for our anniversary dinner by candle light. We were in no shape to go anywhere. But it was romantic and special none the less. Then Roger got a much needed haircut. He is so happy now. I'll take a picture tomorrow so you can see him all cleaned up. I also posted pictures from the cherry blossom festival and his last day at the hospital on Flickr. The pictures from Sunday are in a set called 06 Cherry Blossom Festival and the pictures from his last day at the hospital are in the It's Not a Tumor! set (link to the right).

Roger has an appointment tomorrow for outpatient physical therapy consult and that's it. I'm going to end this now before it gets longer. I'm sure Roger will post tomorrow. Have a great night and thanks for the continued prayers. We need them!

Apr 4, 2006

Home!

I’m home! We are unpacking and getting things situated. And I think a nap is going to take place this afternoon too. Interesting side note: my resting heart rate before the surgery was normally between 55 and 60 beats per minute. Right after the surgery, it skyrocketed to just under 99 BPM. While at NRH it slowly has been reducing into the 80’s and 70’s. Today, it was in the 60’s for the first time: it was 68. I just thought this was another good sign of my body getting back to normal. More soon!...

Where's the cane??

Well, it’s 12:20pm and I’m still waiting for my cane. I got my new wheelchair yesterday that insurance will be renting for us month to month, but I can’t leave until I get the cane. All the paperwork is done, once the cane comes – I am out of here!!!!

I can’t wait to get home!

I can’t even begin to tell you how excited I am to go home today. I woke up at 7am and just laid in bed and savored the fact that that would be the last time I would be waking up in a hospital bed for some time. I prayed to God and thanked Him for healing me and asked for continued healing. I also prayed and also ask that you pray for healing for all those here that are also being treated. I’ve met some great patients here and plan to stay in touch with a few of them. Also pray for all the staff here: nurses, techs, therapists, interns, management, nutrition and maintenance staff. Together, they truly work together in harmony to make people with injuries better. They have done wonders with me and I know the others here will see improvement soon. I’ll have some personal thanks and memories of some of the staff up soon. I can’t wait to get home!

Apr 3, 2006

5,000 visitors and the Discharge!

Wow! Our website has received over 5,000 visitors since we started it a few years back. Over 3,500 of those have been in the past month. Thanks for letting us share our lives with you.

As I write this, it is April 3, 2006 – I had my surgery one month ago today. In the days following the surgery, I was unable to move anything on my right side. The day I left Bethesda NNMC, March 14, I was able to move just my right thumb and index finger. Today I have full motion in my arm again. The strength is coming back slowly, as is my stamina. My finger dexterity is also coming along well – my fingers just need more practice doing things involving fine motor skills. I am finally able to walk without a brace but with a cane. All the major muscle groups in my leg are working in some fashion except for the muscles around my ankle, but I hear those come back usually last. I have to say, I am impressed with my progress and eager to continue to improve and strengthen.

Tomorrow, Tue, April 4, 2006, I will finally be discharged from NRH and will be able to go home. I have been hospitalized for 32 days. I’ll only need to take Keppra, an anti-seizure medication, twice a day. Unfortunately, I will not be able to drive for nearly a year, but there may be ways around that we’re going to check into. Thank goodness for DC’s Metro system!

I’ll be released around 11am and Holly and I are going to configure the apartment for me since I’m still a bit unsteady on my feet. We got a commode riser that will be higher for me to use on the pot. It just goes right over the existing toilet. We also had to purchase a shower bench as I cannot shower standing up as I cannot stand for prolonged periods of time. Plus, it’s slippery which equals unsafe. We’ll have to move some furniture around a bit and then we plan to unpack and relax. I haven’t been home for a good amount of time for a month, so it’s going to feel great to get back to the apartment.

I did get a day pass this past Sunday and we had a great time at church, lunch and at the Cherry Blossom Festival. We took some great pics and had a heck of an experience getting there. I’ll post more on that including pics after I get home.

That’s it for now. My right hand is starting to hit keys twice and it’s getting shaky. It’ll be great to use a lower keyboard at home to type these tomorrow. Thanks to everyone for your continued prayers… keep on praying for my right leg!

Monday, April 3 Schedule

Here’s the schedule of Roger’s last day of therapy. He is very excited, okay…both of us are excited, about him coming home tomorrow.

7-8 Breakfast
8:30-9 PT
10-11 OT
11-12 PT
12-1 Lunch
1:30-2 OT
2-2:30 RT
5-6 Dinner
7-9 CG

Our community group is meeting at the hospital again this week so Roger and I can join in the discussion. We’ll have a recap of Sunday and post the pictures soon.

Apr 1, 2006

April Fool's Day

Saturday, April 1 Schedule

7-8 Breakfast
10-11 OT
11-11:30 PT
12-1 Lunch
1:30-2:30 ST
3-3:30 PT
5-9 Game Night II (see 3/30/06 post for details)