The Bravest Person I know

Let me tell you a story about my sister. She is a couple of years younger than me and just turned 60 last month. She has been dealing with a brain tumor and its repercussions for close to 17 years. She was and still is an incredibly beautiful woman with a sarcastic sense of humor that I just love. A sense of humor that she refuses to lose. Her first warning sign was a grand mal seizure in bed. Of course her husband didn't know what the hell was going on. He tried to put something in her mouth and that almost proved disasterous. They had three kids at home at the time. It was nuts. They got the ambulance, and even though she had come out of the seizure she obviously was confused. She insisted on taking off her jersey she slept in - which is now on ongoing joke about her exhibitionist tendencies.

When they got her to the hospital they discovered the tumor and when they were going to take a biopsy they first had to stabilize her head but the novocaine (or whatever it was) didn't take on one of the screws but they had to finish drilling anyways. The tumor was too entwined in the brain to take out surgically. They eventually did radiation therapy that saved her life but later has come to plague her.

Even with the tumor partially removed she still suffered seizures so they had to screw around with different medicines to try and control them. As it turns out, most of us seem to metabolize these drugs at different rates at different times.Sometimes I would talk to her on the phone and she sounded drunk because she wasn't metabolizing the drug fast enough but the next day she might have a seizure because she metabolized it too fast. Her sense of humor remained. Eventually they figured it out enought so it that she could go back to work running an office in the state govt. of IL. Slowly but surely things started going down. The tumor came back and they gave her some chemo that after only two treatments almost killed her. They really got scared that her white cell count wouldn't come up. It finally did but very slowly and it really knocked her out. It did stop the tumor but the seizures were still around. Her sense of humor remained.

They opened her up and put something in her chest similar to a pacemaker that was supposed to sense when the brain was going to trigger a seizure and would then disrupt it. It didn't do much. They decided after a few years to take it out. Unfortunately when they were taking it out during surgery they nicked her vocal chords basically paralyzing one of them. If your vocal chords are screwed up in that way it can make eating a life threatening experience. So to fix that they had to cut her throat, with her being conscious, and insert a wedge between the chords so she could swallow. But she had to be conscious to test it out. She sounds like a 90 year old person but she can talk and eat. Her sense of humor remained.

Then she fell down and the doctors realized that her bone density was next to nothing partly due to the medicines she was taking, by now a massive amount. In fact when she went in to see the doctor he just put his head on his arms because he had tell her the bad news. Then her balance went. The doctors said it was the after effect of the radiation that saved her life. She was put on a walker. Her sense of humor remained. In the early stages of the balance problem her husband, who by the way is a saint, and her son who was visiting each had an arm as they were going somewhere. Somehow she fell from their grasp and flattened her nose. Of course they were mortified and she kept her sense of humor.

Much of the time she is by herself as 2 of her kids are out of town and the other is working. Her husband owns a business. Many of her friends dropped the ball and weren't showing up to spend time with her. Then she started to become disoriented and losing her mental faculties. The doctor said it was the beginning of the end. Her brain was shrinking he said. Even though they really didn't want to, my brother in law put her in a nursing home - a very nice small one with a lot of attention. My sister was aware enough to know she wanted to go home. This is the only time her humor left for a bit. The first time I talked to her when she was in the home she was crying. That's when I lost it. I don't think I have ever cried like that on the phone with her. What a help I was Mr. Phd and expert in death and dying. She got it back together and even joked about our crying conversation.  They put her in hospice. (She didn't know she was in hospice.) But a funny thing happened. When they started cutting back on all her meds she got better. She was discharged from hospice. (You don't see that a whole lot.) I guess the doctor who saw her brain shrinking missed the other possibility that nobody was keeping track of all the medicines and their possible interactions.

When my oldest dtr. got married a couple of years ago my sister and one of her kids came to the wedding. I got on the stage at the reception and said how happy I was that my sister, who had previously been in hospice and then discharged, was at the wedding. Later her daughter was a little concerned because my sister had never known she was in hospice. That's where both of our sense of humors came to the rescue. When she asked me later about being in hospice I kidded her to get over it, and that how many people did she know from hospice who were now alive and not in hospice. She thought about and started to laugh. She still is on a walker and fighting for herself, but her sense of humor is still as strong as ever.

One last note. When I tell her husband that he really is a saint for sticking in this all the way while working like a dog to keep his business alive, he looks at me like I'm nuts. "That's what you do when you love somebody." I am proud to be her brother and his brother in law.

Comments

[RainforestRobin]

This whole story is astounding, a story of powerful courage. I think my most favorite part is when her husband said, "That's what you do when you love somebody." YES! That IS what you do when you love somebody.

[Tamera]

Ah. Bravery has so many faces. An incredible story, and person your sister. I could almost rant about the medication part, of which I have seen happen so many times..I won't get started on that. I'd rather just appreciate the strength of this lady. Thanks for sharing!