Feb 28, 2006

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.
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