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.