T-2

Figured it's been too long. So here I sit at the trusty old PC, enjoying some cookies and beer (ah ah, don't judge), and recapping life.

So I guess I've managed to stay employed for 6 weeks or so.(BRG inc.) Good for me. It's felt good to be a productive member of society again. I do miss the lazy mornings, free time with the kid, breakfast w/Mom, Facebook, constantly doing dishes... never-mind scratch that last one.

Anyway, I've enjoyed the change of pace, but it's also been rough. I started up with the seizures again. Maybe 2 nights a week, 2-4 a night. I've missed a bit of work because of it, but they have been very understanding. Which leads me back to the title.

T-2 an counting. Tomorrow is my last day of work, before we leave in two days for Cleveland. I hope for the last time. I'm looking FWD: to getting this over-with. Long-story-short, Travel Wed., Testing Thurs., Surgery Fri. morning. After that, 3-5 day stay at the luxurious Cleveland Clinic., and then home for a while.

This time around, Ella is going to ride with us on the way up. I bet she'll like the place. She'll have a good time at the hotel, and there's stuff to do in the hospital. Plus, family will be there. She'll have a good time. I'm not sure exactly when, but she'll head home with Doug and Linda.

BTW, I' starting a "How much further?" pool if anybody wants in.
$1 per 15min. time slot.
50% - 1st HMF
30% - 1st Melt down
20% - last HMF before she falls asleep

For whatever reason, this trip seems to have the least drama surrounding it. We just feel sort of calm about the whole thing. It's kinda good, it's kinda eerie. I was telling Amanda I don't really have any doubt about this trip, but I'm not optimistic either. Weird huh. This has been a year+ in the works, and now I'm just sorta, "whatever, we'll see."

Oy, look at me. I'm all Vechlempt. Pray amongst ya selves. I'll give you a topic. (travel, safety, surgery, calm, peace, recovery, success, Dr., family, hospital stay)

Tony

Wow, look at that thing spin...

In theory, the earth revolves on it's axis once every 24 hours. I'm not so sure. Perhaps, it's a super hero flying around the earth to speed up time, perhaps it's some sort of terrorist plot that causes our clocks to creep ever faster, I'd even be willing to consider that Al Gore is conspiring with said terrorist so he could finally support his climate change nonsense. [side note: feel free to post your favorite Al Gore jokes in the comments section. I can't get enough of them.]

Point is, seems like time is just trickling away. We all have so much to do in so little time. "Time management" tend to become "free-time allocation" "OK, so why is Tony feeding me this crap?"

Simple. Our family has had an amazing weekend. First, We have scheduled surgery to remove the legion for 2/19/2010. How 'bout that? Second, and also huge, I just accepted a job(BRG Inc. Bloomington, IN) that will start on 1/4/2010. OK now, things are looking up, huh.

So, that being said, the two biggest unknowns in our life, just became known. But for whatever reason, all of these other questions seem to pop out of the wood-work. How long should I commute to B-town? Where will we live down there? Will we Rent/Buy?
Schools? Network of friends/fam.? How about the strain of 2+ hrs on the road leaving Amanda to handle Ella by herself? When you look at these things, they all pale in comparison to what we've been through. But, we've got new challenges ahead now.

This initial period of commuting while we live, and Amanda works, in Indy will be tough but, I could emerge on the other side of this next hospital stay, as the bright, intelligent man that Amanda now wishes she'd married. I keep running into Ps. 18 type of verses. (my rock, my shield, my protector, scatters my enemies type of stuff.) So I guess I sayin', even though we worry, and life is still well outside the range of "normal", it is certainly looking up and we know we'll be fine.

And now to complete the circle, yet another prayer request, STRENGTH & CLARITY.
Amanda and I are going into a whirlwind of craziness, getting the house ready to sell, preparing for the next Clev. run, looking into homes, schools, etc. and still having the regular responsibility at home. I have a tendency to "hit a wall" and crash and that doesn't help Amanda at all. We need to not manage, but multiply our time. So, Strength, & Clarity, to know what is important & when, and have the strength and energy to accomplish it while still having time as a family.

There you go, another post that was suppose to be about 1.5 paragraphs. sorry.

Happy Christmas,
Tony

Updates & timelines

Like I said yesterday, I had a sizzle test in the morning at 9a. That all went fine they didn't mess with me too much. They did 3 electrode groups instead of 2. When they were done, he showed me the gruops he tested and the ones he didn't. He tested 7of 10 overall. At that point I asked "why not just do them all now, so there's no chance they'll ask for more." And he assures me we have all the info we need.

So after the Physicians confrence, they roll all the equipment back into my room. Wouldn't you know it, they need more data. To be fair some of it was just changing frequency in the same spot. None the less... irritating.

So, in theroy, I'm suppose to have the electrodes pulled tomorrow morning. However, they won't give us a time. Just... morning. then an over-night stay gets us to Thursday.

We're trying to get home in time to see Ella's Christmas Program @ Pre-school, Thursday-night.

I hope to see you all soon,
Tony

Round 3...

Titled for a couple reasons. 1, this was our third trip to C-Clinic. 2, This is the 3rd time I've tried to write this post. Either, distraction or DSL failure have gotten in the way before. Let's move on.

As you've read in previous post, we took off on Wednesday, had our appointments on Thursday, drove home Thursday-night picked up the kid / dog Friday and now you have a time line.

For the sake of not boring the crap out of you(But still no promises), we're only going to talk about Thursday. We arrived at the clinic around noon. BTW, calling this place a "clinic" is retarded. The word "clinic" makes me think of the show Becker, or maybe the emergency care clinic that's often part of a strip mall. Still, perhaps I should be cautious with the word "retarded" as I'm frequenting neurologists. It's bigger than any hospital, I've ever seen. Bigger than a community college. I dunno, maybe even a small D1 school. Sorry, back to not boring the crap out of you. 1st appointment was at 1pm with Dr. Gonzalez. He's my Neurosurgeon. Yup...Neurosurgeon. He will be preforming my SEEG.

The SEEG
This conversation was both calming, and nerve-racking. He was able to explain how low the probability of any complications are, but he was very detailed in what could go wrong. #1 concern, hitting a blood vessel and causing a "bleed". The size and location of the bleed determine the outcome / consequences. #2 - an infection. When was the last time you heard this, "Oh, I'd love to, but this brain infection is killing me."? I know bad choice of words. #3 - Hitting, clipping or crimping a vessel. That means stroke.

So, There you go. That's the bad news, here's the good. Concern #1 has a .05% chance of happening. They only go down from there. He is very positive about the result of the SEEG. He also seems to be optimistic for the extraction. Also good. He give a little higher #'s than Hantus did. I suppose he can be a bit more accurate, 'cause hes doing the work. More good news: We were told that we'd have to wait until Feb. for this SEEG. While we were waiting for the Dr. in our little holding pen, they got a spot or someone canceled or something, so right now we're scheduled for 11/23. They also said the would move that date up if they could.

On to the good stuff. The SEEG is a little different than I understood. Instead of two electrodes, there will be up to 16. Oy. He said "...you can compare them to spaghetti noodles". They are about the same size (2mm), but don't stick to the wall when cooked. After every thing is well placed in my head, I'll be wrapped up and sent to recovery for a short time. Then, on the Epilepsy Monitoring Unit. I'm sure those nurses can't wait to get me back. Anyway, much the same story as before, stay till ya twitch. They want about 5 this time. That's a bit frighting to me. But, I know they can stop the twitchin' at any time. All it takes is a little bit of IV happy sauce.

So let's say they get their 5. Now we wait. At best, they have everything they need and schedule a resection. Which is what Dr. Gonzales says is most probable. If that's the case we wait two months for my head to recover, before break out the exact-o knives. Second possibility, didn't get what we needed, so we need to replace the spaghetti (electrodes). The same two months apply here. Third, everything worked, we see it clearly and know where it and your motor functions are, but know it's decision time. "How much do you really use your left hand"?(leg, butt-cheek, whatever)

Yea, so, there it is. In all it's complicated, intense, gory, wonder. That's about it.

Oh yea, the we had a FMRI done that took about an hour. It's basically your standard run of the mill MRI but then you get instructions. It measures the increase in blood to areas of the brain to preform functions. After that we left and got home around 11:30p. Long day. Sorry for the novel. I'll try to keep it shorter next time.

As is standard fare for us right now, we continue to be greeted by people that are praying for us. That's great. Thank you all for all of you prayers.

Tony and fam.

Alllrightythen... (continued)

OK, not so rushed now. I'm sitting in my hotel room enjoying the dim luminance produced by by Dave's laptop. That does not mean that Dave is here, it means he's kind enough to share is toys. But I digress...

Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.

So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.

Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.

Type @ ya soon,
Tony

And there's the flop

That not twichin' reference, or even a city pool reference, it's a poker reference.

After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.

OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.

But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.

Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.

So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.

That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.

This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.

We're still here, glad to have you-all, your prayers, your help and encouragement.

Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.

Tony

Yup, I made it home.

I guess they had enough of me. The CCF finally sent me packin'. I stayed there for a little over a week and that was plenty. I don't ever want to do that again. ...until next week. That's right, I'm planning a return trip. This one shouldn't be as bad though. As I understand it, We're headed up there to discuss options with my Dr. after he gets out of a physicians conference. All of the Doc's (Neuro., Pshyc., Surgeon, even the intern) are gonna sit in a room and review charts, films of my head, vidoes of me twitchin', and then they're gonna say here are your choices. "A,B, or C"

I wonder what they'll say? or offer?

"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."

I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.

Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.

T

hey Hey HEY

How's everybody doing? It's been a while, so I thought I'd get back to it.
I was on the phone with a friend today and realized I haven't kept y'all up with current events. I have settled down a bit, so here's a more reasonable walk through of what's goin' on. (can you hear Marvin Gaye in the back ground?)

The new time line is pretty much the same as the first except it begins on August 31th. So essentially, I got pushed back about two months. A few other changes are apparent this time around. In round two, we are getting paperwork that tells us our admission date should be considered tentative. Hmmm... how interesting. More specificaly, they say "we will let you know 1-2 day ahead of you admission if there is a change". Well, we'll be a bit more proactive than that.

Also, the schedule includes time for surgery. Now this is a surprising change from before. I wonder if it to is subject to the rescheduling due to... whatever. Just to be clear, no surgery is planned, just scheduled. Not sure what that means. I guess I've got a block of time reserved.

Anyway, now you're up to date. I'll get back soon with more.

As always, please keep the prayers coming.
Thanks,
Tony

Alright!

It was a good day to get out an enjoy the weather. OK, the weather wasn't so great. But, This is the first day in a while that I've gotten some sleep. For about the last two weeks I've had between 2 & 4 seizures a night probably... 4 times a week. That quite a bit.

It's difficult on several levels. obviously it's difficult to deal with day to day. It put's stress on Amanda and the rest of our family. With a 7/6 OH trip coming I really don't want to start the 4-8 week process of switching meds. All of this to say that on Tuesday of this week, I went in to get a Dilantin level, to see if that could be pushed any higher. Thankfully, I was able to push up 100mg. I'm now on Dilantin 500mg, Topomax 400mg & Keppra 4000mg, and they're all about maxed out for their acceptable range. Which, means an impending switch. Hence, Cleveland.

So, last night, I still had one seizure, but it wasn't so bad. And I woke up @ 7:30 or so, able to get going and help Amanda and Ella through their morning routines. It felt good to be normal again. Hopefully, it's the beginning of easier nights for our family. More rest for all of us would be great.

So back to the beginning, "get out and enjoy the weather". Big plans of a library trip or pulling weeds, which is better post rain, or maybe a driving range, ended up a no go as I had a rather eventful nap. I did say "transparent"

So I guess for now, let's add sleep and rest to the prayer list.

Thanks guys,
Tony