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Tuesday, August 20, 2013

Life Turns

Life takes turns, unexpected turns, happy turns, exciting turns and frightening turns. My brother's life has taken a frightening turn.

When I was a little girl, my brother was a menace, a torturer, a know it all and at times my hero. (But don't tell him I said that.)

My brother, Ben Black Elk, me, and my sister in the Black Hills
 When we were kids he would pick on me. He would tickle me relentlessly until I would cry because I couldn't breath. He would boss me around when our parents weren't home. He would constantly make me feel stupid by correcting me. In other words, he was a normal big brother.

I would get my revenge in any way I could. One of my favorite ways was to call him Benny Boy. He hated it. That's why I loved it. My parents actually were kind of amused by it. So, of course, I made sure to call him Benny Boy when they were around and he couldn't get retribution. My parents would laugh, Ben would seethe. I was quite a bit younger than my sister and brother, so I could get away with stuff like that because I was cute!

There were times though, that my big brother was my protector. One time when we were vacationing in the Black Hills, Ben, Stacey and I were out walking. Somewhere along the way I stepped on a cactus. The thorn went through my tennis shoe and poked my foot. I cried, I was a bit of a cry baby. Ben picked me up, put me on his back and carried me, piggy back, all the way back to camp. I realized probably Half way down the hill, and it was a big hill, that my foot wasn't really hurt, but I loved getting piggy back rides from my brother. We got back down to camp, where our parents were. My mom grabbed me and checked my foot. It was fine. My mom was very proud of my brother for taking care of me that day. I remember her telling the next door neighbor and a few other people about in the days after we got home from vacation. She would glow with pride every time I heard her tell it.

My brother was also my teacher. He taught me many things. Including, most important to me at the time, how to ride a bike. My mom didn't believe in training wheels. She thought they were a crutch, and that kids got addicted to them. Yeah, I don't get it either, but there you are. Ben ended up being my training wheels. He encouraged me for weeks to keep trying to ride the little red bike that used to be his. My dad took out the piece that made it a "boy's bike." He was much too tall for it. Therefore it was now mine. Though he reminded me often that it was really his. He would hold me up on my/his bike, running beside me making sure I didn't fall. He was the one to give me that last push off. That final hands in the air, "I'm not holding you any more" let go that transitioned me from learning to ride a bike, to actually riding a bike. Therefore, my hero.
I know it's bad, but it is one of the first pictures of me riding a bike.
My brother is now the one who needs protected and needs a hero. He has been battling non alcoholic cirrhosis of the liver for several years now. It turns out that he has a genetic abnormality that caused Ben not to produce a necessary enzyme that protects the liver. Over his lifetime the damage was occurring unknown to him. By the time he found out what was going on, the damage had been done. He needed a new liver.

Getting an organ, any organ, is a very complicated process. It takes a long time. You have to qualify, not just medically, but financially, you have to show that you can keep up with the medication regime, and show that you have support for back up. You have to have a specific person ordained as your support person. That person has to be able to come to appointments with you, be available to make sure you take your meds, basically be your best bud plus. Ben has been going through all of the interviews and tests to get a transplant. The one thing that has been holding him back is the financial part, and his MELD score. A MELD score is a battery of scoring how severe a disease process is, and how badly a person needs a transplant compared to someone else who may also be a match for that organ. His MELD score has been at a point where he is considered not sick enough for a liver. 

Saturday evening things changed. Things changed abruptly and severely. A very frightening life turn. I got a call from my sister. I couldn't get to the phone in time and missed it. She left a voicemail and I figured I would check it in a few minutes. I was busy making supper. Then my phone rang again. This time it was my brother's ring tone. "Ooooh, myyyyy, oooooh myyyyyy," George Takei's distinctive voice kept repeating. This time I got to the phone. I picked it up, slid my finger across the screen to answer it. 

In broken words, out of order and hard to understand, my brother started talking to  me. He was at work. He was wondering if his speech pattern sounded weird to me. I listened hard and tried to understand what he was saying. Once I got what he was trying to ask me, I told him that yes, he sounded very weird and I was having trouble understanding him. He asked if I thought he should go to the hospital and I told him, yes. He had already called my sister and had told her that if he hadn't snapped out of it by 8:00, he was going to have her take him over to the hospital. I told him to go right away. He was the only one working and needed to find coverage. He hung up and I waited a while to call my sister, thinking he would be calling her. 

Fifteen minutes later I called her. She hadn't heard from him yet, he was probably still trying to find coverage. She told me what he had said about waiting until eight, and I told her I'd told him to go now. She went ahead and started heading to get my brother. I live an hour and a half from my brother and sister. Plus with having to be here for Dad, I couldn't be there for my brother. 

They got to the hospital, they did a CT scan. There was no bleeding in the brain, and they couldn't see a clot, so no stroke. My daughter Valerie had once had an episode much like what Ben was going through. It turned out to be a silent migraine, perhaps that was what Ben was going through. Silent migraines can run in families, I get them too, but with visual symptoms. I never knew that was what they were and I'd had them since third grade. Since, my daughter and I both get them it sure made sense that was what Ben could be going through. With my daughter, as fast as the trouble with talking started, it  just stopped. I was talking to her on the phone when it was happening. She was having trouble getting the words in the right order, then suddenly she was talking correctly. That didn't happen for Ben. 

The next day he had an MRI which showed a lesion on the corpus callosum of his brain. The doctor called it a glioma, according to my sister. By this time I was talking to my sister only because my brother was struggling so hard to put words together. He tried to text me on my sisters iPad, but he was also unable to do that. His ability to think and understand is there, but his ability to communicate his thoughts is not. 

Being a former nurse, I quickly took to the Internet to look up glioma. I remembered the word, but couldn't remember what it meant. I had a feeling that it wasn't good though. I was right. A glioma is a tumor. It can be benign, or malignant. It can be fast or slow growing. A slow growing benign tumor can present with symptoms, but they are usually subtle. Slow changes, that may not be noticed over years. A glioblastoma is a very fast growing tumor. Very invasive and grows by direct extension, meaning it just grows from one tissue right into the next. It seldom passes through the blood brain barrier to metastasize to other organs. It doesn't have to. It does its evil work quickly and mercilessly. Medium life expectancy for a person with a glioblastoma is about fifteen months with full treatment. Full treatment involves surgery, radiation and chemotherapy. Glioblastomas also appear to have the ability to shape shift and change itself to avoid punishment. Apparently they are made of up to four different kinds of cells each of which needs to be attacked from a different angle.  Did I say Ben has liver disease? I don't know if he can even go through chemo. Since Ben's symptoms hit so suddenly and fiercely, the lesion could be a glioblastoma.

Last night, the hospital said they were going to send Ben to University of Iowa Hospitals today to have them biopsy the lesion. They weren't equipped for such delicate procedures. Since it is affecting his speech, it, or at least part of it, is quite probably in the language center of the brain. That makes biopsy and extraction even more difficult. I wanted Ben transferred right away, but they wanter to wait until today. 

Today my sister got to the hospital and found out they were going to transfer Ben, to a nursing home, with a very poor reputation. She was able to nip that in the bud, but they were still determined to ship him out. Out any where they could. They started talking about a home in Perry, another hour away from here, and another hour away from Iowa City where he needs to go for most of his appointments. As it turned out it was another nursing home with a bad reputation as well. My sister kept fighting them. At one point I told her to have him discharged to home and then just take him to Iowa City to the ER. Ben was worried about the legality of it. While I'm sure it is legal, I don't think he was willing to take the chance his insurance would decide not to pay if he did. Oh, and by the way, at this point we still don't know if my brother has a malignant time bomb in his head. 

Finally, the social worker found a good nursing home in Baxter. Ben agreed to it. Baxter is actually a little closer to me and not that far from my sister. It seemed like a good compromise. 

As the weekend turned into the week, not only did my brother not improve, but according to my sister has gotten weaker. He doesn't have the strength to walk even with a walker. He actually fell while trying to go to the bathroom Sunday. Whatever is wrong is not getting better. Tomorrow, my big brother goes to a nursing home. We still don't know what is wrong. We still don't know if he has a cancer brewing in his skull. He is depressed. He needs a hero. 


  1. Oh, good Lord, what a mess you and your sister have on your hands. Sounds as if he doesn't have a spouse to help, so he is very lucky to have the two of you. Sending the three of you good vibes, as many as I can muster!

    1. Thank you! No, he has never married. Hopefully things will get better.