Home Sweet Home

We are home. We got in late Saturday night. I am exhausted, and I am in PAIN! It seems that during the cisternogram last Monday, the needle going into my spinal column also managed to hit a nerve. The nerve didn't like getting poked with the needle one bit, so my back and my left leg have revolted. It hurts to sit, stand, walk, and lay down. Lovely. Just lovely. I knew my back was hurting, but it always hurts after a lumbar puncture. When the pain got worse instead of better, we had to get it checked out. This is not something I want to deal with.

One the positive side, I got a nerve block in the back of my skull Friday at Mayo. It hurt like holy heck for about two minutes, but then it completely stopped all the pain. Pain free is very, very good.

We are now in the waiting stage. My team of doctors will review all of the test results from the past week, and determine whether or not the neurostimulator implant is a option for me. We are hoping and praying it is. If they say yes, we will be back at Mayo in about two weeks for more testing. The process will take about a month between testing, surgical procedures to get ready for the implant, and the actual implant.

Right now it is the only hope we have to hold on to, so we are holding on tight.

An Answer and More Questions

Today was a day of waiting. And waiting. And waiting. We were trying to get in earlier for a Friday afternoon appointment, so we waited on standby. No such luck today in getting an earlier appointment, but that also means no needles today. Yea!

So we have a few answers, and more questions. The biggest answer so far is that I can not have the major brain surgery to fix the problem and repair the damage. It just can't be done. It is a blow to us. We knew from the beginning it was a long shot, but we were so hoping that something could be done.

Now our hope rests on an implant, something called a neurostimulator. It doesn't fix the problem, but it basically short circuits the pain signals my brain gets, making my brain think I'm not in pain. Realistically, it can reduce my pain by about 50%. That's a huge amount, and something we really, really hope can be done. We don't know if it can be done yet. More tests will tell, but we are so hoping.

I will still have a leaky brain, but the pain from the leaky brain won't be as bad. There are risks and complications associated with the surgery; and I have gotten some test results back that are not exactly making my doctors happy. So the jury is still out on this one. Our fingers are crossed and our prayers are fervent. My main neurologist, after getting back results from one test, told me, "Well, I went neurology because I wanted a challenge. And here you are." He wasn't smiling.

So on to plan B, or C, or D....I've lost count. But still here we are, and we aren't down for the count yet.

Day 3...A Roadblock

Have I mentioned how tired I am? Several times, you say? Oh, sorry about that. It seems to be a recurring theme. This place is exhausting. There's a lot of hurry up and wait. Like this morning. When I thought I had an hour to make my next appointment. When I double checked I realized I had 20 minutes. That's not a lot of time, considering Gary was in the shower, and Mayo is a huge facility.

It got better. I got to the second floor of the hospital, found the right area, and things seemed a little....off. Well, a lot off. It looked like a residential treatment facility. I re-checked my schedule. I was on the right floor of the right hospital at the right time (barely). I checked in and waited. When the nurse came to get me and we started talking, I discovered my first impression was right. I was at the wrong place. A foul up in the scheduling process had me at the wrong building, the wrong floor, the wrong everything. No, I wasn't here for the intensive three week program. Thanks, but no thanks.

A quick check with my doctor proved that a few (dozen) wires got crossed. I wasn't supposed to be at that clinic. I was supposed to be at the other clinic. Which means that now, instead of getting a very important consultation done today, it won't get done until Friday. Sigh. Just another day in paradise.

Day 2 Another One Down

We made it through another one. I have several dozen more needles holes in me. My back is an amazing rainbow of blackish-bluish-yellowish-purple. I hurt, well, pretty much everywhere. I am whatever the word for beyond bone numbing exhausted is.

But, this day is almost over. My bed is calling, and we don't have to be at the hospital until 8:30 in the morning; practically mid-day by Mayo standards. I get to actually sleep all night, and as far as I know, there aren't dozens of needles in my future tomorrow. Maybe a few, but not dozens. A definite improvement.

Day 1...Survived

I survived it. Gary did too. So did my Mom and my sister, who had the very important job of praying. I've got so much scar tissue in my spinal column from so many previous needle sticks that it is very hard to find a new place to go into without hitting scar tissue, which makes a painful procedure worse. Praying was important, and it worked. The needles went in relatively easily, all things considered.

So, this, my longest day, is finally over. I didn't sleep last night, so it was a very long day. The procedures haven't gotten any better, but they at least weren't any worse than I was expecting. I am very sore tonight, with a few more bruises on my back and in my arms. I am radioactive, I am beyond tired, and I can't sleep. One of the tests tomorrow requires no more than four hours of sleep tonight.

I'm slugging double shots of expresso. No sleep last night coupled with this day means staying awake tonight is not going to be easy, even on a caffeine high. Sigh. But this, my worst day, is over. The tests tomorrow won't be fun. One of them involves 22 needles going into my scalp and the back of my neck. Another one involves even more pokes, more than I can count, all to figure out just what is happening in my brain.

It will be a mark of today to tell you that nothing tomorrow will come close to what happened today. I'm not looking forward to it, but neither am I dreading it. It's just routine, and I've had both procedures scheduled for tomorrow quite a few times in the past.

My mom tells me so many people are calling her, praying for me and asking about us. I can't tell you how much it means to me, to have that little bit of home way up here, so far away. Thank You. I've gotta go find more caffeine now.
Signed,
Bruised, Battered, But Not Beaten....

Let The Fun Begin

Well, we are here at Mayo. It's Sunday night, I've had my shower, I'm in my jammies (which includes an Arkansas sweatshirt....it's fun to confuse the locals) and I'm pretty sure there's not a lot of sleep in my future.

I'm not looking forward to tomorrow. By far, it will be the worst day of the three days of testing. But, on the bright side, by tomorrow night at this time, it will be over. I will be in worse shape, but the worst of it will be over. The sharpest needles, the worst pain, the longest procedures; they will all be tomorrow. Not everything Tuesday and Wednesday will be pleasant, but after tomorrow I just won't care. I guess that's something.

So, here we go. Let the sticking and the radiation poisoning and the poking and the prodding begin......

The Great Draining Brain Experiment

By the time you read this, I will be in Rochester, Minnesota, preparing for what will be a grueling week of tests and procedures at the Mayo Clinic. I often mention that I go to the Clinic, but I very rarely talk about in detail. If you know me, you already know about it. If you don’t know me, you probably don’t care.

Since this week may very well determine my future, I’m changing my policy of not talking about it. For one thing, this may be the last column you read from me for a few weeks. Depending on what happens, I may not be able to write for a little while. I love writing my columns, and I didn’t want to disappear without an explanation.

It’s a good bit more in-depth, but we are basically going to determine whether or not I am a candidate for brain surgery this week. In the five years I have been sick, surgery has never been an option for me. We were told it couldn’t be done, that it would cause more harm than good. But new technologies have emerged, and now it might be possible. It might not be.

If one surgery is not an option, another surgical procedure might be. So I will spend three days at the Clinic, literally running new tests every few hours, to see what is possible. On Monday, I start at 8 a.m., and have a procedure at 9 a.m., at 10 a.m., at 12 p.m., at 2 p.m., and at 3:15 p.m. On Tuesday, the whole thing starts again at 8 a.m., but at least we will have time to eat.

By Thursday, we will know what can and can not be done. The options are: 1) major surgery to repair some of the damage from the last five years and possibly fix the problem; 2) less major surgery to help with the ongoing pain but that can not repair damage and can not fix the problem; or 3) nothing can be done.

Although the thought of major surgery scares me, I really, really hope something can be done. I’m tired of nothing being possible, tired of the pain, tired of the waiting. As long as we knew nothing could be done, we just accepted it and went on with life. Now that we know there might be hope for, if not a cure, then at least a reprieve, it’s almost worse than before.

If the outcome of all the testing is still that nothing has changed and nothing can be done, I think it may be harder to accept, to have hoped and then have that hope yanked away. Then again, we’ve dealt with it for five years, and we will continue to deal with it.

We determined long ago that this illness would not control us, that we would control it. It has gotten a little meaner, a little sneakier. It’s playing rougher here lately. But that’s okay, because I’m a fighter too. And what I’m fighting for here is too precious to lose. I’m fighting for my life, for my family, for my husband and my son. For peace. I’m not going to give up. I’m not going to give in. And I am not going to lose. I am not.

If you have any spare prayers laying around, you can send one up north for Gary, who will be with me this week. He was going to be in Virginia, but Nucor let him come with me. Gary may very well end up wishing he had stuck to the original plan of sending my Mom with me while he went to Virginia. It’s not going to be fun for me, and it’s going to be even worse for him.

You apparently can’t figure much out about a brain without sticking needles somewhere. Usually into a spinal column. The needles seem about two feet long, and they just about always have some sort of radioactive dye in them. And no, I don’t get to be asleep for the procedures. Not any of them. If I start talking crazy, having seizures, lose consciousness or some other not good thing, that would be an indication for the doctors something bad was happening. So while they are poking and prodding and taking pictures and generally making me radioactive as all heck, I’m laying there perfectly still and wide awake. Fun. Or, Not. At. All.

Then they get done and deliver me, sore, radioactive, and in pain, into Gary’s hands. He takes care of me until it’s time for the next test. He pushes the wheelchair, makes sure the injection site doesn’t spring a new leak (which would be an emergency), feeds me, comforts me, talks to me when I can’t sleep, and helps me get dressed when I’m too sore to do it myself. Then we go on to the next test, where more needles with more dye awaits. Sigh.

My Mom and Dad have Logan. They all get along just fine. However, Logan’s teacher could probably use a spare prayer too. Dad doesn’t have any problem feeding Logan pancakes with ice cream and gummy bears on it, then sending him to school. Or letting him drink Mountain Dew. Or letting him stay up late, or any of those other things that can make a child not do well in school the next day. Dad calls it having fun. I call it a nightmare for the teacher. Mom has her hands full with the two of them.

Many of you have expressed your concern for me, and I can’t tell you how much my family and I appreciate it. I am going to be fine. I really am, no matter what. I am not looking forward to all the yucky stuff that goes along with having something wrong with your brain, but that’s just part of it. We will get through this, no matter what "this" turns out to be.

I look forward to coming back to this space soon, hopefully with an improved brain. And if not, well, it will just be the same old leaky brained me. But at least I will be back home, in this space where I belong.

Still Loving, After All These Years

Friday, October 12 is my parent's 45th wedding anniversary. Wow. James and Peggy Decanter, who started out as teen-agers with $3.00 in their pocket and nothing else, have been married 45 years. What an accomplishment. I've been married 14 years and think that is something to be proud of. But 45 years....I can't even begin to imagine it.

She was 17, and had only been 17 for a month when they got married. He was 19. They didn't have jobs. They didn't have a place to live. They had no money. She was a senior in high school. They had absolutely nothing, nothing but love. Over the years that nothing has turned into something. They've made a success of themselves in every way, but the best thing about them is that they still have that powerful love, that love that conquers everything, even no home and no money and no job.

I have no doubt that if they lost everything but each other, they would still survive, because if they had nothing but each other, they would still have everything. They would still have love. After 45 years, they still cuddle and hug and kiss and hold hands. She still says "Wow!" when she sees him in the morning. He still makes sure everyone knows she is the queen of his castle.

They raised us, their daughters, to love, honor, and respect them. We didn't backtalk our Mother, because our Father simply did not allow it. We didn't talk disrepectfully about our Dad even when he wasn't around, because our Mom simply would not tolerate it. Even if she privately didn't agree with him, she stood by him in our presence. They were a united front. There was no "divide and conquer" in our household, because they could not, would not, be divided. They were a team.

Forty-five years later, they still are.

About Around Here

I wanted to let you know why I chose the name Around Here. It's sort of a southern thing, to hear about Around Here. When something is done well, that's just the way things are done Around Here. When something is not done well, we can do better than that Around Here.

Every couple of months, I go to the Mayo Clinic in Minnesota. And every single time I am up there, someone says "you're not from Around Here, are you?" No. No, I'm not. I'm a Southern girl, born and bred. It's something I'm proud of. There's nothing wrong with being from Up There, it's just not for me. I'm from Around Here. I was born Around Here, and I'll die Around Here.

I hope I can bring honor, light and laughter to Around Here. I hope to make you smile, and sometimes I might make you cry. Maybe I'll make you think. It's all a part of being from Around Here.

A New Journey Begins...

So Here We Are....Something new for me, and something I hope you will enjoy as much as I think I am going to. I love writing my weekly columns, but sometimes things happen Right Now that I wish I could talk about, but know it will be over and gone before the column comes out.

The nature of the newspaper business is such that my deadline is actually days before the column appears, so breaking news is often no longer breaking or even news by the time you are reading my column.

This gives me another avenue to talk about things and be a little more current, but more than that, it gives you a chance to give me feedback. I love hearing from my readers, whether it is a "good job!" or a "you really blew it this time!"

We are in this together. I'm looking forward to it, and I hope you are too.