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.