Witnessing Von Hippel Lindau

Head surgery + Head injury = A night in the ER

2006-02-11T04:56:00.000-06:00

So, yesterday my mom hit her head on the door frame of her car while she was cleaning a stain off the seat. She was in pain, took some painkillers and was fine. As the day progressed, the headache came back...with a vengeance. She took a Tylenol Extra Strength and went to bed. That did nothing. She took a Vicodin and went to bed. Still did nothing.

When I was in the bathroom, she kept groaning in bed, but wouldn't answer to my calls of "Are you okay?" I went in there and asked her again, and she said she'd be fine, she'd have to let the drugs kick in. I let her be, but an hour later she came into my room saying she couldn't get rid of it. I asked her if she needed to go to the hospital and she said she didn't know.

Eventually I gave up and said "You're going." and went to my neighbor to borrow their car (our car is a stick-shift, and... I don't know how to drive a stick-shift). My mom changed her clothes and we got the medicine that she'd need to bring to show the lady what medicine she takes and we left. This was my first time driving in a few months, so it felt a little weird, but freeing to be able to drive again. She spent half the trip holding her head and groaning. When we got there, I took two parking spaces (yay for forgetting how to park) and helped her inside.

The lady at the front desk asked her what was wrong, etc. etc., asked for her name, and other general information. We were ushered in some double doors and to another lady that was separated from the lady (in the front) by a sliding window like at a fast food drive-through. This lady asked some more in-depth questions like what happened, what kind of medicine she took, and when she had her surgery and who it was by. She called a nurse to bring us to a room and the nurse did some preliminary stuff, and went to get the doctor. We waited inside. I brought my trusty Nintendo DS and spent most of the time at the ER playing that.

The doctor came in and asked her what was wrong, clarified stuff, and said he remembered her from before. He felt really bad. He said he was going to give her a pain killer via syringe and he wanted to take a catscan of her head to make sure everything was okay, and she didn't damage anything. He left, and five minutes later (I think) a male nurse gave her the pain killer (demorol) in the hip and left. Five minutes later she was losing her pain, and was falling asleep. 20 minutes later a lady came in for her catscan. She was gone for ten minutes. She was brought back, and we waited there for another hour or so. Before we left, I was going to ask someone for a cup of coffee to make sure I stayed awake, but the nurse said she was just coming back to release us. Yay. My mom took a few seconds to wake, but we left. Thankfully, I didn't know how much longer I could stay awake, like now.

which means, I'm going to bed.

Oops.

2006-02-06T17:09:00.000-06:00

So, since the last time I've posted, a lot of things have changed.

My mom's been driving lately. Amelia went back to CA. And my mom had her staples removed today, in which she's going to keep and make into a bracelet or some other kind of jewelry, and with all her future surgeries, she's going to keep the staples and do the same.

My mom goes back to work on February 27, which she's really looking forward too. She misses working. She can't stand laying around and doing nothing. She has to be up and working, or doing something, or just be active. I've grown up to her like this.

One thing that I really respect her for is the fact that some people would be sitting around, whining and complaing and moaning about the pain and how bad it feels, my mom never does that. Never. Unless it REALLY hurts, and that's on rare occassions. It takes a lot for her to complain about pain, but even then, if she's in pain, she takes the lovely little pills her doctor prescribed for her for the pain. The day after she was out of the hospital, she was up doing stuff. Nothing I, Amelia or my sister could do to stop her. That's how she is.

I met her surgeon today. Funny guy. He had a medical student in the room with him, telling him about my mom's disease and the type of tumor she has, pheochromocytoma (yay for Dictionary.com to check for spelling). She said only one out of a 100,000 people have that tumor, so that means roughly six thousand people in the world have it. Almost shocking in a way. It's very rare. Dr. Rak told the student that he would never meet another person with that kind of tumor, and Dr. Rak meeting my mom with that type of tumor was the first. Unlike the average pheochromocytoma, my mom's type ARE cancerous, they are not benign.

He said that when he went in to take out the tumor, he was going to take out her "giggle factor" as well because my mom's always laughing, and he told the student that it was inherited as well through me and my sister. When he said that, my mom and I busted up. He said that she was always laughing and she was one of his best patients for it. She never complained, she was always in a chipper mood, and all he'd have to do was walk in the room, and she would laugh, even when she was in the hospital bed recovering.

He was a really entertaining guy. You gave him a subject, and he spent 20-30 minutes longer than needed on it. I'm a Mac person, and so is he. He was talking about an experience with a Mac salesperson and his wife via the phone, and later on I asked him what kind of Mac he had, and we talked about that for nearly 20 minutes. He said how much he loved the 1984 commerical and told my mom she NEEDED to see it, so I showed it to her.

Anyways, that's all that's happened so far since the last post...

Changes

2006-01-31T14:37:00.001-06:00

My mom is having a problem with jackets or pull-over sweaters. You see, with pull-over sweaters, you have to pull them over your head. Well, my mom had her head cut open a week ago, so trying to pull a sweater over her head or off her head causes pain and takes three times as long if she didn't have that incision. Yesterday (yes, I forgot to post.) she spent the morning, half-yelling cause the sweater caught on her hair, so Amelia and her formed a system. When she yells at about the pain, Amelia yells with her. If my mom says "Ow!", Amelia says "Ow!" with her. If my mom says "SHIT!", Amelia says "SHIT!" with her.

When she came home from seeing my uncle, her brother, she had a jean jacket on, which I'm guess got caught on her hair when she put it on, so.. taking it off wasn't easy. Eventually it came off, but it was a slow process.

But, before they left, my mom tried putting on a hat to keep her head warm. Bad idea. My mom told Amelia to beat the hat up, but Amelia said she couldn't when it was still on her head. My mom took the hat off, and Amelia started slapping it across the counter top, throwing it on the ground, etc. It made my mom feel better.

Day after coming back...

2006-01-29T21:12:00.003-06:00

My mom got back yesterday from Urbana, IL. from having surgery on her skull. She had a tumor that was the size of a half dollar there, and it had to be removed as soon as they found out about it. We found out about the tumor on Friday, the 13th, and she had another appointment (I think) the Monday after. The rest of that week involved going to and from the doctors in Urbana (we live about four hours away, so it took its wear on her). Her surgery was scheduled for Wednesday, the 25th. Now looking at the calendar, it doesn't seem like it was a short time length, but experiencing the calls day after day, it felt very hurried. ...

(through my mom's point-of-view)
"We found out I have a tumor in my skull." - Day 1
"Oh, there's another doctor's appointment two days after the first, something's serious." - Day 2
"The tumor is touching my brain a little, it completely ate through my skull, my surgery's next Wednesday." - Day 4?

Usually when her doctor finds out there's a tumor in her body, it's serious in its own right, but he'll normally schedule the surgery about three weeks after finding out where it's at. With this, he scheduled the surgery a few days after finding out about it. It took us all (family, friends) by surprise, cause she was still in the process of telling people that she had the tumor, and then she ended up telling them when the surgery was a few days after. Some people didn't find out she had the tumor until she told them a day before having the surgery. Some people didn't find out until my sister called them and told them the surgery went successfully. It was a very big shock to everyone, but as always, she survived, and thriving.

Today was a usual day for me, and a usual day of recovery. My mom's best friend, Amelia, flew out from CA to come help take care of my mom and relieve grief. She's a huge help. I woke up when they were at the store, and when they came back, we ate lunch. My mom looks so different after the surgery. You can see the wear it caused underneath her eyes. You can tell it wasn't easy for her. On her head, she has her incision, with staples.

Afterwards, she took a nap because the pain killers made her sleepy, so Amelia went for a walk while she slept. When her friend came back, we both went to my sister's to get some movies tow watch. My mom loves Day After Tomorrow, so that was among what we brought back.

She was pretty happy throughout the day, I guess the pain killers are helping, but around 7-8 PM? the pain came back. She was laying on her best friend's arm, holding onto her, while Amelia rubbed her back, and tried to help ease the pain. I could only imagine the types of headaches she gets after having surgery on the most important area of the body. She had me get her Tylenol, so I grabbed the bottle and reached over the kitchen counter and gave it to Amelia, who gave it to her.

But, that's the extent of what's happened for today. Tomorrow will be a new day, with new challenges.