How are You......Really?

I get this question all the time. "I've read your blog, but I still don't know how Scott or you are. How are you, really? In the spirit of making sure this update is no frills, and to the point, here's where we are and how Scott is, right now.

You wouldn't know to look at him, that anything has changed. The 50 pound weight loss works in his favor. He looks amazing for everything he's been through. The giant scar from surgery, is barely noticeable, because they didn't have to shave his head for the surgery.

One month ago, Scott underwent an operation to remove as much of his brain tumor as possible, that required him to have an incision from about the middle top of his head, carved like a sideways question mark ending right in front of his left ear to expose his skull. They needed to create what's called "flap." This flap, is basically a 2-3 inch diameter piece of skull drilled out to expose the place in the brain to be removed.

At this point, they woke him up. So he could talk to the surgeons, ensuring they would not damage his ability to communicate. Both thought and speech are generated in the part of the brain they were operating on. Once the doctor removed as much affected brain tissue as possible, about a 4 1/2 cm section of the left temporal lobe, they put Scott back to sleep and closed him up.

Closing, involved patching the dura. This is a tough skin like barrier which prevents fluid surrounding the brain from leaking out. Then, they replaced the flap by reattaching the circular piece of bone they removed, with titanium screws. Once that was done, they pulled the skin back over his skull and stapled the entire incision shut.

This surgery was a miraculous in so many ways. The fact that human being can live through such a thing is absolutely amazing.

The recovery, however, is long and very, very difficult.

His surgeons told us, there would be relatively no pain, since the brain has little actual nerve endings.
What this ended up looking like, was that in relation to the rest of the body, the actual pain center would not be as much as say, an open heart surgery. But make no mistake, this was extremely painful. That would have been nice to know ahead of time.

He has had to be on a pretty strong narcotic pain medicine since Feb 16, 2015. He has headaches every single day. He forgets to eat. He has somehow lost all interest in eating anything at all. Food just doesn't taste good to him anymore. He still has to take 6 huge horse pills, also known as Keppra, to prevent seizures.

He has a hard time thinking of the right words to use. He forgets people's names, unless it's someone he knows really well and sees all the time. He can't read or watch television for any length of time, because his left eye is still recovering from the surgery. His left ear does not hear the same way and he has a hard time following conversations sometimes.

To most people, none of this is highly noticeable. He is great at masking. But he has lost most of his filter. He told someone at church on Sunday, that they look old. That 4 1/2 cm piece of the temporal lobe they removed, has affected his impulse control. He says whatever comes to his mind, whether appropriate or not. He doesn't mean to say things, but can't really control it at this point.

He hasn't lost any motor function, at all. In fact, when we met with the radiation oncologist last week to discuss the radiation and chemotherapy treatments he will be starting, I joked that the doctor had just declared there doesn't appear to be anything wrong. "You're doing above average, as far as I can tell."

Emotionally, though, he struggles with feeling different than he once was. He wants to be better, and is having a hard time, not working, and not having much to do that he can enjoy. I keep reminding him he is only 4 weeks out from brain surgery. But he still asks me everyday, "why does my head hurt all the time?"

So how is he, really? It's a complex question, with a lot of different answers. According to his doctors, he is doing fantastic. According to him, depending on the mood of the hour, he is either doing fine, or thinks he is a burden to his family and feels guilty and awful for something he has no control over. He sleeps a lot, which is to be expected. He has mood swings, which is also to be expected. He still has pain. He is still healing, and will be for a long time yet.

But in the big scope of how he is, he is alive. He is able to speak and think and do a lot of things independently. He is worried all the time, that he is causing too much difficulty for his wife and children. He worries about the fact he has been unable to work and provide for us for over year now. There is no amount of me taking up the slack, that makes him feel better about any of this.

How he is, varies from day to day. But he is getting better and stronger, every day. He is more aware of his emotions and how he affects others, although that control isn't there.  The emotional toll on all of is is quite a lot. But with the grace of God, and all the support of people who love us, we will get through. Scott will continue to survive and eventually be able to return to work and enjoy all the things he loves to do.

It will just take awhile. And in the meantime, we will keep hunting for hope.