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

Comming home...

I'm unhooked,showered, and getting ready to go. I should be released from my deluxe accommodations here at the EMU in room 3 soon and then we'll be headed home.

The Electrodes came out yesterday. It was less than efficient, and no time lines were kept, but that's not really news. We started 2 hrs. late. I spent 5 Hours in recovery (instead of 60-90 min.) most of this is because the nurses have such a hard time getting a hold of Dr.'s to get orders. The important thing is that it all went well and I got back to the room with out complications.

That brings us to today. After speaking with the Gonzalez (Surg), he's got a more positive outlook for things to come. The details are a bit much to explain here, but I am much relieved. Anyway, I as I've said so often, on behalf of Amanda, Ella and myself, Thank you for your prayers.

Last day with a tail

No, I'm not evolving, I'm having the electrodes removed at 1p today. I cant wait. I got these things put in on Tuesday the 24th @ 7:30a. We arrived at the hospital at 6a per our instructions. Since then, I haven't had anything more than a sponge bath. So... Amanda is ready for this to end too.

We have been telling doctors, surgeons, residents, nurses & assistants that we need to get out of here "No later than 10a Thurs. morning. They all have been saying it's no problem. I'll believe it when I'm out the door. But I do think they will make an effort.

But, I guess I should tell you about the consultation with Gonzalez(surgeon). He's giving us some options about how to proceed. As, I give you this, keep in mind he has not received the results from the latest sizzle test.

Anyway, Opt. 1) Do nothing, wait for better medicine, or better technology to develop so the risks will be reduced in the future.

Opt. 2) Proceed with the transection, go on as planned and take the risk of a "weak" arm/hand (anything from mild lose of feeling to completely useless non-functioning arm.)

Opt. 3) Still proceed, but in a different manor, preform a DTI ( a form of MRI that shows actual brain fibers.) Then, While the transection is in process, they will wake me up under a local anesthesia, and constantly test my motor function while he is removing tissue. Wow!

He is leaning toward Opt.3. He says there's about a 60% chance of completely removing the seizures, and having no affect on my hand. but with opt. 3, there is a much better chance of being able to rehab the "weakness".

It's a lot to digest when a surgeon looks you in the eye and tells you all of this and you've already come this far, with 10 holes in your head. We knew it was a possibility, but it's not what we expected for some reason.

Well I don't know that I can be anymore open/transparent than that.
They should take me to the OR in a little less than an hour so.

I'm Tony Rench
Stay classy Indianapolis

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

Not so bad...

So let me tell you, I was the Sizzle. (see last post) That was some crazy mess. They'd click a button, and my leg or hand or whatever would twitch or tingle. Or, They'd be basically make my brain pause. Surreal.

Anyway, we got through 4 of the 6 electrode tests which took about 2.5 hours. We're going to start again in the morning.

After that, All info from all test will be reviewed by many doc's and surgeons in the afternoon. I'll have a consultation after that. They should remove the electrodes Wed. morning, and release me Thursday morning.

At least that's how it's suppose to go. We'll see.

Thanks for the prayers,
T

Happy Thanksgiving

Hey everybody. Just thought I'd throw a post up to let you know things are going okay. Also, to share a few pictures.

First, I thought you all should see something Shannon made for me. I've been having a lot of fun harassing Cleveland Browns fans.
Thanks Shannon for helping me look good walking the halls.
We spent Thanksgiving Day watching football in the room, M52-03 and having a wonderful Thanksgiving meal, turkey loaf and all. Someone here did bring me pumpkin pie, God bless her.

As far as my twitching goes, I haven't been very productive, but the little bit I have been, they've gotten information from, so that's good. They are taking me off my last medication tonight, so it should only get more exciting from here. With a little luck, we'll be home early next week.

That's really about it for now, I appreciate the prayers. Hope to see you next week.

Happy Thanksgiving everyone.

Oy! It's mid-October.

So yea, I haven't been posting in a while. Sorry if that bothers you. If it doesn't bother you than apology retracted. Mainly, the lack of posting is due to the directly proportional lack of activity. However, as with daughters, jobs, tax laws & breaking a 50... you're bound to have change.

I'll get right down to it so that this post isn't so ridiculously long. As I'm ramping up on one Rx, the trifecta seems to be weakening a bit. As a result, I've had 2 seizures over the last week. Yea, I know, kinda sucks huh. I can't say I'm suprised, just disappointed. You know, I've had a pretty good run on this combo for a good while, which usually spells the end. That's why it's called "pharmaceuticaly resistant" epilepsy.

So, not to be over dramatic, I imagine that this will continue on a down turn until I get to the CC. (I hope it's obvious that since the blog is already text, "CC" stands for "Cleveland Clinic" and NOT "Closed Captioned") The upside here is while there, I will probably be able to "produce" much quicker than before. Assuming that is the case, I could be home in around a week.

I think I mentioned it before, but if not, I'll be headed back for one day of testing on 11/23 and then admitted for surgery on 11/24.

I guess I'm just asking for prayer to time this "decline" so that it's beneficial. How odd is that? Also, I (and my wife) need sleep.

Go to it. Get prayin'.
Thanks,
Tony

PS As I type this, Amanda says to me "No seizures tonight OK? 'Cause you know, it's all about me."

Haha