Back on for Friday

It has been a day of many decisions, let downs and new information.

We woke up early and made our way to the Bolling AFB clinic to do all the pre-op work that Johns Hopkins asked us to do. They told us to be there at 9:30, but they didn’t manage to see us until almost 11am. There’s nothing quite like sitting and waiting for an hour and a half to start the day off right. We explained our JH versus NNMC surgery issue to my doctor and she was sympathetic, but wasn’t able to offer much assistance. She did order the labs and EKG, but that’s all she was able to do. We had been trying to get a hold of the surgeon’s assistant at NNMC all morning, but didn’t have much luck. When we did finally reach her, she said we really needed to talk to the doctor himself. It was sounding more and more like our hope of having the surgery done at Johns Hopkins was not going to happen. I called and left a message for him to call me. We cleared out of there after 12:30 and decided to go to lunch.

While we were waiting for our table at lunch, the surgeon finally called me back. We first talked about my interest in having JH perform the procedure. He cleared the air immediately by saying that since Bethesda NNMC is perfectly equipped to perform this type of procedure, there was no chance of he or the military referring it out. That’s just how the rules work. Since I was expecting this news, I was not surprised, but it did let the wind out of my sail. Then I hit him with a barrage of questions about the differences between the technologies between the two facilities:

• Johns Hopkins wants to do a MRI Angiogram; NNMC wants to do a CT Angiogram. He explained that the two are similar and are really a doctor preference. He’s sure that the data they need can be discovered with either test.


• JH is going to use a cutting edge tool called a Wand MRI, where they’ll put little markers, or fiducials, on my scalp and take an MRI using a wand to create a 3D map to use during the surgery; NNMC never mentioned that. Well, I guess we just never asked about that. NNMC will be using the exact same technique; this MRI will be performed during pro-op on Thursday.


• JH will perform a frozen section during the procedure to determine how aggressive the removal of the tumor should be; NNMC never mentioned that either. Well, we just didn’t ask about this either. The same will be done during my procedure as this is pretty standard practice these days during tumor removal surgeries.

So, what it comes down to is the fact that NNMC simply did not present us with a lot of information about the procedure and preparation when we met last week. Was it because they usually don’t go into detail with patients or did we simply not dig deeper? To tell you the truth, I think that we were so shocked by the experience that I think he thought we had had enough, which we probably did. As the days wore on throughout the week, we learned more and more about this procedure and what is done to prepare, but I never went back to ask more questions. When we went to JH, we were ready to hear everything and asked a bunch more questions that we never asked NNMC. So, apples to apples, it looks like the two procedures are pretty much identical. The only difference is the fact that the NNMC neurosurgeon doesn’t perform craniotomies as often as does JH… there is a difference in the amount of experience. And the other difference is Bethesda is not a well known teaching facility whose name rings around the world. Truth is, we were completely satisfied with our decision to have the operation performed at Bethesda until we started being urged by others around us to look elsewhere for a second opinion. While in the process of getting a second opinion, I fell in love with the idea of having JH do it at their prestigious university. We got our second opinion, the doctors there agree that it needs to be removed soon, all the doctors we have spoken to agree that it needs to come out. If our neurosurgeon at Bethesda did not think he could get it out safely, he would tell us. Both doctors leveled with us and told us that there is a risk that I might come out of this with some permanent damage. That danger is inherent to the type of operation that this is. There is no way to avoid possible damage; the risk can only be minimized. All the proper steps will be taken to minimize that risk as much as possible. The way my body recovers from the trauma it will endure will be a big factor in how well I recover after the surgery. Both doctors stated that I may also be a bit weak after the surgery, but I’m sure that in time, with your prayers and our faith, I can overcome any weakness and be back to 100% quickly.

Back to the conversation… I felt at ease talking to him and he did not put any pressure on me. He told me to take my time and make the decision that was best for me and my family. I hung up and I shared my conversation with Holly over lunch. We both shared a few tears and realized that we needed some guidance in the matter – we called upon Pastor John and set up an appointment to talk to him.

After lunch, we made our way to John’s office and we began to discuss the above. It became clear to me that I was struggling with some faith issues. I quickly broke down into a very hard cry, which I think I really needed. I released so much sadness, fear and confusion. John urged me to let it all out and I did. I felt so relieved and like a burden was lifted from my shoulders. I can’t remember the last time I cried so hard… In this release I was immediately able to think about and ask the questions that I was fighting to come to grips with asking myself…

• Is God testing me?


• Why is God testing me?


• Why is He letting this happen to me?


• Have I done something wrong to be put in this situation?


• Why can’t I just pray about it and be healed?

Along with these questions I have fears:

• What happens if I come out of this injured for life?


• How will my life be different?


• How will I provide for my family disabled?


• How will I feel about God if I am injured?

There were so many questions and fears – but I was finally able to get them all out and we talked about them. I have come to terms with these questions and still have others to answer. I'd also like to hear your thoughts on the above, feel free to send me an email.

Holly and I went to Bethesda tonight for a CT-A which took all of five minutes. There was some fear that our appointment might be cancelled or delayed by hours as a bunch of injured troops from Iraq were coming back for immediate treatment. But they were a few minutes out and we were squeezed in very quickly. We go back Thursday for pre-op and back Friday for the surgery. Tomorrow is going to have to be a day of rest for me and Holly. She’ll work a little bit and I need to get some sleep. My bronchitis is only a little better, it needs to get better so this can go forward on Friday.

Sorry for the extremely long post tonight… It has been a rough day for me emotionally. Let me wrap it up: The bottom line for me right now is this… We were comfortable with our doctor and the risks involved. We have faith that I’ll go into this surgery and come out of it just fine. There are a lot of people out there who care about us and are praying for us to get through this. I’m laying it all on the line and we have decided to move forward at Bethesda on Friday morning. The surgeon would not be doing this surgery if he felt that I was in danger. He told me that himself, and I believe him.

Prayer Needed

Please pray for God to give us clear guidance, to surround us with his love and to fill us with his peace.

Thanks. We love you guys.

Denied

Bethesda will not refer us to Johns Hopkins for the surgery. We have called JH and asked them to take us off the calendar for Thursday. We are headed to Bethesda for the CT-A at 7pm. More info later…

Big Changes

Oh boy – more changes coming down the pipe…

Holly and I made the amazingly short drive up to Johns Hopkins today to see a neurosurgeon there. We found it easily enough – we had time to grab a bite. The only thing we could find nearby was a Burger King – more healthy food… yum. All these medical visits is making us eat like crap. We each got a spicy chicken sandwich; it was the most disgusting repulsive thing I have eaten in a while. The “sauce” tasted like a mix between buffalo wing sauce and bad mayo. It really was very hard to finish. The only way I could finish it was by scraping off the sauce and disgusting green tomatoes they put on there. And even after that, I had to toss the sauce soaked bread and just eat the chicken. I wouldn’t have eaten it at all, but I had to eat something. Being in the military, I’ve learned that even though the food may taste like poop, it’s all you got, so eat it… so I did. Ick. I can’t believe they sell that thing.

We made our way to the fifth floor of the Neurology Outpatient clinic and wasted about 30 minutes there trying to figure out if they could even see me since the Tricare referral that we placed Friday hadn’t come in yet. They wanted to charge me $675 on the spot (a “new patient fee” they called it) – but I wasn’t willing to pay it until we made some more phone calls. I had a bunch of numbers and a very good AF Captain at Bolling finally convinced them to see me. They had me sign a form promising to pay Tuesday if the referral doesn’t come in. Relieved, I signed the form and I’m sure they’ll have their paperwork tomorrow. Off we went to the Meyer building to see the Neurosurgeon.

We met with the Neurosurgeon’s nurse and she looked at the film and asked us a bunch of questions. She also gave me some more of the physical tests that I’ve already done twice before. Every time I do these, the doctors seem surprised that I have no loss of strength or headaches. The nurse was very thorough and made us feel quite at ease. The doctor finally met with us and he also took a look at the films after consulting with his nurse. He is a very nice man who is very smart, knows what he is doing and he is very important at Johns Hopkins (at least, that’s the impression he gave us). He said that he had an opening this Thursday, March 2 and has scheduled me for the procedure at 9am! Wowie! This Thursday? They apparently think my bronchitis is not a big factor. They also will not be doing a CT-A, but want to do an MRI-A and also an MRI with wand. This is a procedure where they will place little markers on my scalp and then take an MRI with a wand and point to different points on my scalp to help them create a 3D image of my brain so that the doctor can visualize exactly ho to approach the tumor and avoid the sensitive parts of my brain to prevent injury! These two will be done Wednesday afternoon. Tomorrow morning we need to head to the clinic at Bolling AFB to have some pre-op tests completed and then take the results to Johns Hopkins (JH). We’re doing them at the clinic to save some dough for the military. So far, the folks at Bolling have been very helpful in cooperating with us to get JH what they need.

All this sounds great, right? So what’s the catch? Well, remember that it is taking days for the referral to get to JH. Another referral for the procedure has to be sent up to JH from Tricare. Not only that, but since I really think that JH has superior technology to prevent injury to me, I have to start the wheels in motion to get my military doctors to agree and put in that referral. Unfortunately, we didn’t finish with JH until after 5pm and it was too late to contact anybody. I left messages with the doctors at Bethesda and Andrews, but I’m going to have to wait until tomorrow for an answer. Luckily, we’ll have until about 5pm Wednesday to wait before we have a GO or NO GO for the MRIs and surgery. That gives us almost two entire business days. Please pray that they agree and move quickly.

A few more things about the surgery at JH… the doctor said that he operated on a case very similar to mine just this morning. He also puts the risk at permanently damaging any brain tissue at 5%. Lastly, they have the leading pathologist in the US at JH. This Pathologist will be present at the surgery and when they open by head and get to the tumor, they will take a frozen section from the tumor and give it right to the pathologist. The pathologist will then immediately analyze the section and make a determination, on the spot, of whether he thinks it is malignant or benign. If it is benign, they can then be more cautious removing the tumor. If it is malignant, they will be more aggressive in removing as much as possible. It will be nice to have this extra step during the procedure. Of course, the true pathology of the tumor will only be known after a thorough examination of the tissue 5-10 days after it is removed. He says that I’ll go right from the OR to the Neuro ICU and remain there for maybe 24 hours. Then I’ll be in the general ward for maybe 5 days. Then I’ll be free to go home to recover and wait for the pathology report.

At this point, I’m hoping for the military to agree that JH should do the surgery and then for the paperwork to move quickly. Again, we need big time prayers on those two. I’m going to stop by work tomorrow to do a few last minute things and also to see if a coworker, who lives about a mile from the hospital, will be able to put us up Wed night. Lastly, we got a gift certificate from a few friends for Holly and I to both get massages – boy do we need them! Thank you to Su, Kezia, Jumoke, Linda, Erica, Amanda and Ericah! You guys are awesome!! We’re going to try to have them done Tuesday evening.

And a final note – I have been seizure free for almost two and a half weeks – until today. I had a mild seizure as we were waiting to pay for parking at JH. No biggie, bit it was a small blow to my confidence. It has been another long day. We have more trials ahead, but it is nothing we can’t handle with God by our side.

Wonderful Morning

What a wonderful morning! I got a call from Johns Hopkins at 9am sharp. Their neurosurgeon wants to see me at 2pm today. They've faxed me some instructions and information. Apparently, the referral has been approved, but I won't have an authorization to give Johns Hopkins - the paperwork will get there after I will, but if they bill me, I can just submit a claim. Everything is going well today, so far. I just need everyone to pray for our safety getting up there, for the skill of the doctor and for favor from the military's approval that he perform the surgery if necessary. I'll update y'all later with what Johns Hopkins finds.

Physical Setback

I woke up this morning at 6am with a bad cough and could not sleep. I felt heavy in my chest and I knew what I was up against as I have felt this way in the past... Bronchitis. As I laid there in bed, I contemplated what I should do next. I could just bear the cough and deal with it Monday, or we could trudge to the ER at Walter Reed and get treated. I decided that in the best interest of getting healthy as quickly as possible, we should go to the ER. Bear in mind, we had only had four hours of sleep at this point, so this was a heck of a challenge getting up and going (more on the four hours of sleep in a bit). We made the long winding confusing drive through DC to Walter Reed and got there at about 7am. I had an exam, chest X-Ray to rule out pneumonia, another visit from a different doctor and a visit to the Pharmacy to get some meds. We made it out of there at 10am. I'm glad we went, but what an ordeal. It really wasn't all that bad - the worst part was, of course, the waiting. Heck, what do you expect at 7am on a Sunday morning at the ER? They were very nice and I got an antibiotic, decongestant, cough suppressant and inhaler to help me breathe a bit easier until my lungs clear up. I'm not sure how this is going to affect what's going on this week, I'll have to call the doctor tomorrow and see what they think.

About tomorrow - it's going to be a good day - I hope. I'm planning to call the Tricare office early to get a referral authorization number to give to Johns Hopkins. I'm also waiting for a phone call from Johns Hopkins to schedule an appointment for a visit with a surgeon there. It will be either Monday or Tuesday afternoon. If I don't hear from them by 11am Monday, I am supposed to call them. I also need to call my doctor at Bethesda to let him know about the Bronchitis. I have no idea what the outcome of that will be - but since I essentially have a virus in my lungs, I am skeptical that the surgery will take place this week. I want to be as absolutely healthy as possible so that I can recover quickly. I'll let you know what happens right here when I find out.

The rest of the day was fun. We came home right after the ER to freshen up and then we skidaddled right off to church. I don't think we would have made it, but we were having a volunteer fair and I was the only person there to recruit for the video team, so I really wanted to be there. I had quite a few people interested in the team, but I had a whole lot more ask me questions about what's going on. I wish they had read the blog like you are! It would save me a lot of breath. But I appreciate everyone's sincere support and care. It really means a lot to me.

After church we went to lunch and then came home for a nap. We needed a nap and it was quite pleasant. We wouldn't have gotten up, but I wanted to stop by my First Sergeant's apartment to bring dinner to him. Larry recently returned from Iraq and had a procedure done on Friday and has been holed up since then. We brought him some delicious chicken from El Pollo Rico (which is the greatest rotisserie chicken I have ever had in my life! check them out if you're ever in Arlington) and we talked about his tour over there and he shared some pictures with us. It was nice to provide him some company and to get to hang out with him again - he's a very nice guy. He'll be heading back home to Texas in a few weeks.

Last night was a blast too... we had dinner with some great friends at a New Zealand restaurant called Cassatt's, also here in Arlington. A good friend of ours, Rex, performs there with his friend about once a month. We had a great time with about fourteen friends and enjoyed some fabulous food. Pictures from Cassatt's can be found here. After that, we hung out with our friends John and Tamra. It was a loooong day, but a heck of a lot of fun.

Just a reminder... if you want to be updated of updates to this blog, you can scroll down to the bottom of this page a sign up. You'll just have to type in your email address and it will send you a confirmation email that will ask you to click a link to confirm - but it is free. We will also be testing out a feature that will allow us to post a short voice audio message that you'll be able to click and listen to. This might come in handy on the day of the surgery to update you on the progress. You can keep the page open and hit refresh to see if there's an update, and then click to listen to it. It will be an easy way for us to get news out quick. Well, the meds I took are starting to work and I'm getting sleepy. I hope to have good news for you tomorrow!

Quiet Saturday

We had an uneventful afternoon. We got up at about noon after getting to sleep shortly after midnight. Yes, that means we got about twelve hours of sleep - and boy did we need it! We stopped by my work so that I could pick up some belongings and a set of uniforms. We also did some shopping and had lunch. Not much really...

Tonight we're having dinner with about fourteen friends at a nice restaurant where a good friend of ours is performing too. We saw him there with a large group last month and it was a blast then. This should be just as fun. I'm so glad we have been able to simply relax today.

Progress!

What a busy day today was. Kezia picked me up and we drove to Bethesda with the intention of walking in to the “Credentials” department and getting all kinds of good information about the doctors there. We found the office and we asked the first person we saw, an enlisted sailor, if we could get that information. She looked perplexed and said that she was pretty sure we would not be able to get that information. But, she said she would take us to the department head to see what he would have to say. She walked us over to his office and he pretty much told us the same thing. He asked him what info I was looking for and I told him that I guess I really wasn’t sure. He said that he could tell me that our doctor is fully qualified and has never had any malpractice suits brought against him. That was about it. Not quite what I expected.

We walked out feeling pretty defeated and decided that a drive to Walter Reed would also be a waste of time. That’s when my cell phone rang. It was a call back from Johns Hopkins! The nice lady said that I would need to obtain the written Radiologic Examination Report from Bethesda and fax it to them for review. She said the department head (I think) would review it and have one of the doctors call me. I hung up the phone and told Kezia what they told me – Kezia said, “we’re here now, let’s get it!” I’m glad she was with me – I wold have gone right home and then called around for it. We walked right to the MRI department where I had my MRI done and asked for a copy of the report. She printed it out on the spot and gave it to me. We drove back to the apartment, wrote up a cover letter and faxed the paperwork off at about 4:45pm.

We got some coffee and I got another call from my Primary Care Doctor at Bolling AFB. She said that she saw that my surgeon already put in the referral and it is in process. She suggested that I call the Tricare referral person Monday morning for the status of the referral and to get the authorization if it is ready. It was starting to sound like everything was going to have to wait until Monday.

Kezia left and I waited in the lobby for Holly to come home from work. She finally arrived and we made our way up to the apartment. When we entered there was a message on the machine. It was the nurse of the Chief of the Neurological Oncology Department at Johns Hopkins. The doctor that looked at my case gave it to him because he thought it should be handled by the most experienced person at the hospital. It turns out that this doctor performs over 400 craniotomies per year and has been working at Hopkins since 1987. He definitely seems to have more experience. The nurse I spoke to also has differing opinions on my current treatment. She thought that I should be taking steroids to reduce swelling (NNMC thought they are not needed now and that the side effects are too severe) and that the CTA I am scheduled for next Tuesday may not be necessary. Now, she is a nurse, so I took her comments with a grain of salt. She did say that this looks like a very serious case, especially because of the size and location of the tumor. She said that they might be able to see me Monday or most likely Tuesday afternoon. She also said that they might be able to get me in for surgery on Mar 3 also. I asked her how we would handle the whole civilian doctor doing the surgery versus the military doing it. She said that she thought they could make a very good case to the military that Johns Hopkins should be doing it. If I don’t hear from them by 11am Monday, I am supposed to call.

So, nothing can be done until Monday. Amazing things have happened today, in good time too. Weird. Anyway, I think we have a good opportunity to just rest over the weekend. We can’t do much, so that’s a good thing.

I’m still suffering a little bit from this cold. My nose is still a bit congested and I have a little bit of a cough. It is supposed to be very cold this weekend – so I’m going to try to stay inside where it’s warm and kick this cold.

Lastly, our cell phone minutes are almost gone for the month and the billing period just started. If you call our cell and we don’t answer, just leave a message – we’ll get back to you soon. Off to dinner!

Credentials and Opinions

It has been an interesting and very busy morning. I woke up with a fire in my belly to get something accomplished today. I got up and checked my email and I had about 20 messages to deal with. After that I started looking up information about Tricare and Johns Hopkins Hospital. I called the Tricare toll free number and asked him what the referral process is. He said that my primary care doctor would need to put in a referral for me – that seemed odd since she has no idea I have a tumor. She is the doctor that sent me off to a neurologist after I told her I was having seizures. So I called her office and left a message for her to call me back. After I hung up the phone, I immediately got a call from the neurosurgeon’s assistant at Bethesda! She was calling about the referral that he put in for me at Walter Reed. What timing! I then asked her if we could instead change it to Johns Hopkins and she agreed to – she would put in the paperwork and said it would have to be approved and would not be in the system until Monday. Darn! Monday? That was fine – I went ahead and called the number for the Johns Hopkins neuro department I found on the internet and asked them what the referral process is like for a second opinion – she transferred me to a lady that deals with referrals and I left a message, so I’m waiting for a call back.

Whew! That’s not all… While I was talking to the surgeon’s assistant in Bethesda, I asked her if there is a way I can get more information on all the surgeons at Bethesda and Walter Reed. She said, “of course there is! I’m entitled to it.” Each hospital has a credential department where I can request any information available of the neurosurgeons that are assigned there. Man, you know I’m going to look up as much as I can now. What’s next? Well, my friend Kezia is going to pick me up (since I’m not allowed to drive anymore) and we’re going to grab a quick lunch and then head over to both Bethesda and Walter Reed to collect as much information as possible. That’s all for now – more later. Oh… also, my beautiful wife, Holly, has made her blog debut below. Be sure to read her post.

My Turn

Okay, this is my first time to ever post to a blog. Forgive me Lord, for I know not what I do. And this may be long. (surprise, surprise)

First, I want to say thank you to everyone who has called us, emailed us, prayed for us. We feel so loved. You have no idea how your words make us feel. I can't go very long without tearing up during the day. But it's good. I need to cry. I'm trying too hard to be tough. I also want to thank everyone for the offers of help and for all that many are doing to support and encourage us during this time.

Second, which actually should have been first, I have to thank my Savior Jesus Christ and my father God:

-for revealing this tumor to us now and not letting it grow any larger.
-for the friends and family that He has given us to help us through this tough time.
-that He opened our eyes and we are aware of Him in our life and for His promises.
-for His love, hope, peace and strength.
-for blessing us with a wonderful church, understanding employers, generous and loving friends. -for making our circumstances better and better.
-for putting in our life a wise and caring surgeon and neurologist.
-for the love letter He sent us to encourage us and strengthen us.

Please praise the Lord with us.

Tuesday evening: Well, with the news we received, I know in my heart of hearts, that God is going to get us through this. It's only a little speedbump in our path. He only gives us what He knows we can handle, so He must know we can handle this. And it will be for good in the end because we love Him. The tumor has to come out and the worst case scenario of outcomes we can handle. It's no big deal, we'll get through this and in the future we'll say, "Oh yeah, you had a brain tumor, remember."

Wednesday morning: Wow! That's the only word I could think of. It seemed so surreal. I know it wasn't a dream, but it still didn't seem real. All the information we received on Tuesday was mind blowing. I think my brain blew a pressure gauge. I thought I'd be fine at work, get my mind off things. I didn't even make it to the building. As I sat on the Metro and walked to my building, I could feel something, I don't know what to call it, building up inside me. It almost felt like my body was filling up from my feet. When it got to my stomach, I didn't think I could make it. I had 40 million thoughts going and it was all over the place. And as it got closer to my head, I started to feel like I was going to fall out, not pass out, just fall down and like I was grasping for air a little bit. I was trying so hard to not look people in the eye. I thought they could see how I was feeling. I didn't want them to see that I was emotional. That's my normal reaction, be tough and not let anyone know how hard of a time I am having. I know, I can't do that. I learned that the first year of Roger's deployment, but I've done it for so long that I can't help but have relapses to my old self. I decided that there was no way I was going to make it without passing out. I hadn't eaten since the night before and it was already noon. We were up so late the night before that we slept in. Although I felt like I had to get to work since I had already missed half of the day, I knew I had to eat or I'd pass out. So I stopped and ate lunch. As I was sitting there, my mind started again and my eyes started to fill up with tears. I ate as much as I could, soaked up the tears and blew my nose and went to work. I made it through the rest of the day since I could focus on my work and not this.

Now, on to today: I had a rough start to my morning. I went to sleep with feelings of fear. And woke with the same feelings. Prayer in the shower helped me get past that. It sucks being at work, but I can't do anything to help at home. I might as well be productive here and save my vacation and sick leave time for the surgery. We're struggling yesterday and this morning with the possibility that the neurosurgeon we've been assigned to doesn't do craniotomies as often as we'd like. We'd prefer to have someone who does it regularly. We don't want inexperience to be a factor at all in this surgery. We don't have to have the surgery there or with him. Although I think he's a great man and is probably a good neurosurgeon. He helped us a lot on Tuesday. So Roger is going to spend the day trying to find out from Tricare (military medical insurance) what our options are. And I'm sure you know how fun that is going to be. Maybe it's good that I'm not at home. I'd just get frustrated and make matters worse. We really need guidance from God to make the right decisions and for favor to get a good neurosurgeon. Isn't life crazy?

I'm doing okay other than that. When I'm not thinking about or reading something specific, my mind is full of this. It's all over the place. Sometimes I start to get overwhelmed. Sometimes I want to cry. Sometimes I can control my emotions. And sometimes I can't. I'm not angry or mad.

I need to spend more time in His word and really meditate on it. Specifically the following:

Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Psalm 34: 1-6 I will extol the Lord at all times;his praise will always be on my lips.My soul will boast in the Lord;let the afflicted hear and rejoice. Glorify the Lord with me;Let us exalt his name together.I sought the Lord, and he answered me;He delivered me from all my fears.Those who look to him are radiant;Their faces are never covered with shame. This poor man called, and the Lord heard him;He saved him out of all his troubles.

We have been given some great scriptures, such as Romans 8:18-39. I know it will get better. His word says it will and God keeps taking care of everything. We have an awesome God. If you don't know that yet, I pray that He reveals himself to you and you are blessed with the knowledge and experience that God is great! Here's a plug for one of my favorite verses, Proverbs 3:5-6 Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

Lastly I just want to say that I love my husband with all my heart. More than I have ever loved anything. Thank you God for loving me so much that you gave Roger to me so that I can know true love like you and Jesus love us.

Doubts

After meeting with my three doctor friends, and hearing back from the Neurologist after she checked with her attending, Holly and I are in agreement with their diagnosis and course of treatment. We know I’ll need surgery soon to remove it. We understand that it will not be known if it is cancerous or not until after the surgery. The only thing I am not comfortable about is the doctor’s skill level. I know he is a talented doctor, but I’m not convinced they do enough craniotomies at Bethesda to make me feel comfortable about it. It seems to me that the possible risk of complications could be lessened by someone with a steadier hand or more experience. Have I come to a point where I just need to let my faith take over? That I should simply trust that the doctor that has cut his trip short next week just to do this procedure will be able to do the surgery just fine? Or should I not settle for good if there may be something better? I feel like I’ve just walked into a car showroom and am ready to drive away in the first car I see. This is my brain we’re talking about here. This is my future, my life. I’m so confused and I don’t know where to start. I am definitely going to call the Tricare office tomorrow to see what my options are if I choose to check out other hospitals. Does this mean the surgery won’t take place next week as planned? Maybe. Does this mean I’m going to postpone it until I feel more comfortable with the doctor? Possibly. I’m sorry my parents already booked their flights, but luckily they booked with good ole easy to work with Southwest. And Cassie, don’t buy your plane ticket just yet. I just want to make sure that I am getting the best absolute treatment possible. Lord, please be with me…

Getting Some Answers

Gosh – got a ton more emails from everyone. Thanks so much! Also, if you use AOL or Yahoo, you can click the link on the right there to add this to your homepage. A lot of people are subscribing to the email feed on the bottom of the page – welcome!

I got an email and call from Richard who suggested we get a second opinion just to make sure we are heading down the right path. This sounds like a good idea – I’m going to talk to our doctor about it to see if we can facilitate this ASAP. He suggested going to John Hopkins in Baltimore. What do you think? Post a comment below or send me an email.

We also heard from Tommy who is a former co-worker of Holly’s – he reminded us that Shannon (also a former co-worker) also had a surgery very similar to this just a few years ago. She shared some very interesting insights with us and we will be giving her a call this evening to talk about her experience.

Derek, one of our pastors from Grace Community Church, called me and I think we have a ride hooked up for my parents to get from BWI to the NNMC next Thursday. What a relief!

My Branch Chief called me this morning and everything at work is good. I got the letter from the doctor for work and he was happy with it. He assured me that they are 100% behind us.

I forgot to mention that Tuesday night we had three doctor friends come over to look at the MRI film, one was a Neurologist and all three seemed to agree with my Neurosurgeon’s findings. They had wonderful insight to share with us and it actually made us feel a lot better about the whole thing. Thanks to Paul, Diana, Su and also Dan.

Back to research and seeing about that second opinion.

Lots of research

I woke up this morning when Holly kissed me goodbye before she went to work. My sinuses and head are congested and I have a headache, but my throat is definitely much better. I’m going to actually eat breakfast today – yesterday I didn’t eat anything until almost 4pm, which was 22 hours after my last meal. I know – I need to take better care of myself. Today I am waiting for a call back from the First Sergeant of the Medical Hold Company at Walter Reed Army Medical Center (WRAMC) regarding what my status will be when I go in for surgery and what our housing situation will be. All indications are that there won’t be any issues, but I want to make sure. The last thing I need is to move out after brain surgery. I am also waiting for a letter from my doctor basically excusing me from work so that I can take care of all these little odds and ends. Unfortunately, I need to make sure that all the legal paperwork that will take effect in the event that something “happens” is still in good order. I also need to look into our life insurance policies to make sure they are also in good standing.

I also need to take some time to do some research on the two types of tumor that this might be. I have not even had a minute to do that and I want to better understand what I’m up dealing with here. This morning, I got some emails from friends and family as far away as CA and WI. Hi to Dan and Andi in WI! The email from CA was from Jeff and Vera, the parents of my good friend since 5th grade (you read that right), Cassie. It’s funny – the last time I saw my brain in detail was back when I was about seven years old. Cassie’s dad worked for a company that, if I remember correctly, installed one of the first MRI machines at UCLA in CA. They needed baselines and he asked me if I would be interested in participating. After all, I’d get paid $15 just for laying in a new machine for about an hour. How could I say no? Anyway, they imaged my seven year old Hispanic brain and I suppose they used it to compare other kids’ brains to for several years. I hope there wasn’t something there that was abnormal that they thought was normal! Every kid after me would be diagnosed as abnormal!! I doubt that happened… I’m pretty sure everything was fine back then. But, amazingly, I still have a copy of that film in my closet back in Austin. The doctor is actually interested in seeing it and wants us to get it to him so he can take a look at it. Interesting, eh?

I have no idea how many of you are actually reading this thing, but if you are, please leave a comment by clicking the link down below. Also, if you scroll all the way down to the bottom of this page, you can actually subscribe to a service that will email you whenever I add an update to the blog. Cool huh? And it’s all free to you and me. Who doesn’t love free?

Lots of emails!

I have been getting lots of emails from friends and family, and all we can say is thanks. Your kinds words are very encouraging to us both. I have not heard any information today that would indicate that our living situation is stable. I'm hoping that we'll be able to get it all sorted out tomorrow.

My parents will be flying into BWI on Thu Mar 2 at 1:55pm, but Holly and I will already be at the hospital. My dad says that he and my mom are willing to take the bus and metro to Bethesda NNMC, but anyone that would be able to pick them up at BWI and bring them to the hospital would be a great help. Please drop me a line if you can help us out.

I failed to mention in my earlier post that in addition to all this news, I have fighting a cold. We have been receiving a lot of phone calls and all the talking on the phone is making my voice very hoarse. So, I'm trying to stay off the phone as much as possible to save my voice for talking to military officials. And I've got a nice juicy cough too. I need to kick all of this before the surgery so that I'll be healthy for the recovery.

Also, I mentioned the eye twitch in an earlier post. The neurosurgeon asked me how long ago the twitch started. I said about three weeks ago. He then asked me when I started taking the anti-seizure medication. I said.. about... three weeks.. ago. He gave me that one eyebrow higher than the other look. I guess the two might be related.

Holly and I spent the evening sitting on the sofa watching the Olympics. We ate chili cheese dogs. Life is good.

-Roger

The Diagnosis

Hi all-

Sorry again for the mass email. There are very important things happening in our lives right now that we want you to know about. As you may know, back in November I started experiencing seizures in my right arm. When I bought it up to my doctor, we were treating a back injury and she opted to fix the back problem first, them look at the arm. Well, the back is better, but the seizures kept on happening so I went back. She referred me to a Neurologist at Andrews AFB who I saw about three weeks ago. They wanted me to do an EEG and MRI of my brain and also placed me on anti-seizure medication. I had the EEG two weeks ago and it was normal. I had the MRI last Thursday morning and the Neurologist called me later that afternoon and wanted me to come in Friday morning! I thought that was a quick turnaround and suspected something was up – unfortunately, Holly and I were leaving to spend the weekend in NYC Friday morning, so they agreed to see me Tuesday morning. By the way, Holly and I had a great time in NYC – what a crazy place!

Anyway, that brings us to yesterday morning. I drove all the way out to Andrews for an 8:30am appointment and the doctor told me that the MRI shows a tumor in the left side of my brain that deals with motor functions, which explains the seizures in my right arm. He was adamant that I meet with a Neurosurgeon immediately and called the on-call surgeon at Bethesda National Naval Medical Center. The surgeon agreed to meet with me at 1:00pm. I guess I expected the news, but when it came, it was still unbelievable. As I was walking out of his office, I was in a bit of a daze – I walked out the wrong way and realized that the chapel was right in front of me – I walked right into it without hesitation. I contemplated the situation for a few minutes and then the tears came. But as quickly as they came, I realized that I needed to get to the love of my life as soon as possible – I had to tell her in person although she was at work. I got into my truck and started driving to her work. On the way I called my Pastor who was in Mississippi on a rebuilding mission trip. He said a prayer for me and then I called my parents. They were very shocked but took it well. I made my way to Holly's work and thought about how I would tell her. But I couldn't think of the right words and just went up to see her. The news was upsetting for her and me, and we shared more tears together. She told her boss about the situation and we left for the appointment.

After picking up a nutritious lunch at McDonald's, we made the long drive to Bethesda. We met with a very knowledgeable doctor who showed us the film from the MRI and talked about treatment options for this kind of tumor. On to the pictures! I have attached some clear pics of the tumor.

The first picture, brain1, is a shot as if you were looking up at my brain from my feet. The right side is the left side of my brain. You can see the circular shape of the tumor. The white area around it is edema, or fluid caused by the tumor disturbing my brain. It's the brain's way of protecting itself.
Brain1


Brain2 shows exactly how deep in my brain the tumor rests. Yes, that's me – cool, eh?
Brain2


Okay, lastly, brain3 is a shot looking straight down as I'm lying on my back. The tumor is approximately 2.44 x 2.28 cm in size, or roughly just smaller than a quarter.
Brain3


So, what does all this mean? First of all, they don't think it is cancerous. It is possible that it is, but they will only know after they can get a sample. It is possibly a meningioma or astrocytoma. They are not able to do a biopsy of it because of where it is located and because there are important blood vessels there going through it or near it that could be damaged during a biopsy. The surgeon recommends that we simply remove the tumor. In fact, they think it is urgent enough that they have scheduled me for surgery next Friday, March 3. He explained the procedure to me in detail… they would perform a procedure called a craniotomy. They'll basically cut a square in my skull, drop the brain out of the way and try to get as much of the tumor out as possible. The surgeon is pretty sure that they can get most of it out as long as a blood vessel does not run through the tumor as it looks like it might on the MRI. I am going in on Tuesday for a CT-Angiogram so that they can map the flow of blood through vessels in my brain. If the blood vessel in question goes right into the tumor and stops there, they can clamp it off and take out a lot of the tumor. If the vessel goes through the tumor or just along side it going to other parts of my brain, they will not be able to get too close to the vessel or they might cut it and cause a stroke. So, they might have to leave a little bit there. Any tumor that is left there can likely be treated with radiation therapy (not to be confused with chemotherapy.) Only after they get the tumor out will they know if it is cancerous or not. Again, radiation can be used to treat cancerous cells – but we'll cross that bridge when we get to it.

It was when the doctor went into the possible complications of the procedure that I almost passed out (no kidding). During the procedure if the brain is bruised or swollen, I could temporarily lose function in my right arm, hip, torso, and upper leg. Therapy would help me regain use of these in time. Worst case scenario is that if the tissue is damaged, I could lose the use of some or all of these parts permanently (this is where I almost passed out- but I was glad I didn't as I didn't want to lose my precious lunch.)

At first we were not sure if we wanted to do the surgery here or in TX. But being that it is Bethesda Hospital, a leader in the US, we think we are leaning toward doing it here. The procedure will take 3-5 hours and then I'll be wheeled right into the ICU. Depending on my recovery, I could be moved to the ward within a few days. I should be out of the hospital within a week. Then the recovery period will begin – I cannot work for 30 days following the surgery. Again, there is still some uncertainly as to where I'll be spending this time – either in our apartment in DC or in the hospital, or part here and part in Texas. We just don't know and are trying to get answers as I type. We still have a lot of unanswered questions regarding treatment, military rules and regulation with this scenario, where we'll live, when we can go back to Texas, etc. From this point forward, I'll be posting updates on our situation, including my past two emails, to my blog website right here at http://www.mommaerts.org/weblog/blogger.html. Check back every day for updates to the run-up to the surgery and my condition afterward, as well as Holly's and my thoughts on everything and ohhhh... pictures! And please leave a comment!

We are so thankful for such supportive family, friends, church and co-workers. They have already stepped up to the plate during this time of uncertainty and covered us with understanding, love and prayer. We are also forever grateful for an absolutely awesome God that will be there, by our side, as we make important decisions and He will get us through these next few weeks. Right now, I think Holly and I are experiencing some fear, but what is getting to us most is the uncertainty of the military and its lodging policies. I hope to have more questions answered today and tomorrow. We ask that you please pray for comfort, strength and most of all, that the tumor is not cancerous and that I make a full recovery. We love you all and we will be in touch via the website.

With all His love,
-Roger and Holly

Arm Seizure Update

Hi all-

I wanted to send you a follow up to my last email since I had my MRI this morning. The MRI went well and was fast. It is amazing how fast and how much smaller the machines are these days - but they are still loud! And it is amazing that I had the MRI at a facility 30 miles away from my doc, but he was able to see the results instantly. I guess I should not be surprised - IT is my thang!

My follow-up appointment was scheduled for Mar 2, but the doctor's assistant called me this afternoon and wanted me to come in tomorrow (Fri), but I couldn't - so he's seeing me Tuesday at 8:30am. I guess it kinda freaks me out they he already saw the EEG and MRI and wants me to come in so quickly - my mind is thinking bad negative things. I know I should not jump to conclusions, but for the first time, I am sorta scared. I need prayers for peace (especially since Holly and I are supposed to have fun in NYC this weekend), courage and also prayers for these negative thoughts to leave my head. I just keep telling myself, Lord, you are with me... Heck, for all I know, he might just want to see me quickly to pass on some good news.

I have not had any seizures this week, but had an astounding six last Friday and about three on Saturday. So, are the meds working? Who knows - they sure do make me groggy though. I had to come to work late since I went to my appointment, and man, was it hard staying awake on the subway this morning. I probably looked like I was under the influence of some gooood drugs! Well anyway, have a good weekend... it is supposed to be very cold in NY this weekend. Highs Sunday in the 20's! I'll let you know what the doc says on Tuesday.

-Roger

Arm Seizures?

Hi everyone,

Sorry for the mass email. I just wanted to share a little about something going on in my life right now. Here's some history first… a few months ago (Nov 05, I think) I experienced a very strange sensation in my right arm. I can't recall exactly what I was doing at the time, but my arm began to convulse on its own. It was highly unusual yet very fascinating. The episode lasted just a few seconds. It happened again soon after that, but I began to notice that, somehow, I knew it was going to start going bezerk. I just had this feeling that came over me and I knew it was coming. The action my arm makes is kind of like the motion your arm would make if you were shaking someone's hand. It moves back and forth, or up and down, about two inches one direction and then two the other. While it's doing its thing, I can't stop it. I have a little control on my hand, but I cannot stop my arm from moving. I'll have an episode maybe once up to three times a day… sometimes back to back days and other times a few days or even a week or more between episodes. I mentioned this to my doctor one day while I was seeing her for back pain, but she thought we should control and treat the back pain first. About a month later, the back pain was better and I had several episodes over a weekend – I decided it would be best to come see her again.

I told the doctor what I have explained to you… she said that it sounds like I am having seizures in my arm. "Seizures?" I thought… I would have never thought to call it that. She also said that my ability to know in advance, that a seizure was coming, is called an aura. I had heard this once before when I explained all of this to a doctor friend of mine, but hearing it again from this doctor made it really sink in. She gave me a referral to a Neurologist and told me to follow up with them.

Feb 1 I went to see a neurologist at Andrews Air Force Base. I met with a student doctor, an AF 2nd Lieutenant, and then met with the attending, an AF Major. The Major pretty much did a lot of the muscle tension and reflex tests that the 2LT did, but he noticed something the 2LT missed, there was a slight over-reaction in the way my right lower arm was reacting to a reflex test. He said that my reaction was quite jumpy and similar to that of a little girl (no jokes here folks.) The left side made a small reaction, the right side a bigger and jumpier reaction. He said that this indicates that my brain is, for some reason, reacting differently with my right arm. And as we all know from biology, the left side of the brain controls the right side of the body. He said that there are many things that could make the brain have a reaction like this: tumor, scar tissue, trauma, or just weird nerves. He said that an MRI would let them see if there is anything visibly affecting my brain. He also said that an electroencephalogram (EEG) could tell them if there is any abnormal brain activity going on. He also prescribed some medication to see if the seizures stop. I have an EEG scheduled for Mon Feb 6 at 10am at Andrews AFB, and I have an MRI scheduled for Thu Feb 16 at Bethesda National Naval Medical Center.

I also started taking my new medication last night, Trileptal. I hear it is a relatively new medication. I read quite a bit about it and it looks like the side effects relate to making one drowsy and such, but I took one last night and I didn't feel too bad. I'm taking one a day at night before bed for five days and then two a day after that. I think the one I'll have to take during the day will affect me more. After all the tests, I'll schedule a follow up appt and they'll tell me what's next.

We don't have a whole lot of time left here in DC. I just hope that they can figure out what's wrong before we have to leave or TX. But I know that once we get there, there will be more tests by the civilian doctors to make sure that they agree with the military doctors' findings.

UPDATE: I wrote the above last Thursday. While writing it, I lost it (or thought I did) because the network flaked out on me and I wasn't able to recover it until Tuesday. So, I went to my EEG appointment on Monday and the test was done with no complications. Unfortunately, I won't get the results until my follow up appointment, which is now scheduled for Mar 2. I'm taking the medication twice a day and it is not presenting any complications during the day - other than making me a bit tired if I don't move around while at work. I haven't had any seizures at all either. Now, I do have a new thing going on though, my left lower eyelid twitches. It does this most of the day, on its own. Nothing seems to trigger it. Apparently, it is called Myokymia. It seems to come on for a while and then go away on its own. I read that it can come on due to excessive alcohol of caffeine (that's not it) or fatigue or stress. I have to admit that we haven't been getting enough sleep and this whole arm thing has me just a little stressed out. Hmm.. there are a lot of things stressing me out these days.. Holly's condition, going back home. I just need to chill out and take everything one step at a time. The twitch is not life threatening, but it sure is dang annoying. Sometimes, it twitches so much my whole eyeball moves. It's like an eye-quake!

Anyway, if you could please pray for healing for Holly and I, wisdom for the doctors, and peace and relief for us from the stresses of our ailments and relocating again, I'd appreciate it.

Thanks for listening and I'll update you soon,

-Roger