Wow, this weekend has been wild, crazy, and a lot of fun!
I'll post a full fledged monthly update some time next week. For now I just want to talk about the weekend and how Relay went.
Friday afternoon around noon, we began setting up our campsite for the Relay at Lincoln High School. It was crazy trying to get everything done and the plan for having Relay inside wasn't fully figured out so there was quite a learning curve and things had to be moved around a few times at the campsite. We were able to finish setting up before the Survivor's Dinner at 4:30 with the exception of some minor details. At 4:30, I went with my Grandma and her friend Ida to the survivor's dinner. We are all three survivors. Of course, you know my story. My Grandma had a tracheotomy 12 years ago from throat cancer and her friend had breast cancer around the same time. The meal was catered by John Guzzardo and it was absolutely fabulous.
We had walking tacos we were selling throughout the night thanks to a very generous donation by my cousin (he owns Kicks and a few Subways). They were a pretty good hit although it would have been great to sell 100 more or so! At 6, the Relay started with the team lap and the Survivor's lap. It's really quite overwhelming when you walk the survivor's lap. Everyone claps as you walk the track and it really makes you realize that THIS is what Relay is about. Celebrating those still with us and later in the luminaria presentation, remembering those we've lost.
Around 8:30 the square dancers were on the floor until the luminaria event began at 9. We were supposed to start at 8 but the auction ran longer than they expected. It felt good being out there dancing again. We've been so busy with Relay and stuff that we've only been dancing twice all year. I wish to thank all of the square dancers that came out to support Relay and me. It really meant a lot to me to see such a wonderful turnout.
At 9, we started off the luminaria lighting with some words/stories from some of us touched by cancer. I was privileged to be one of the speakers at this and I hope that my speech helped drive home some of the messages that the American Cancer Society wishes to send about cancer. At some point in the future, I will post what my speech was so you all can read it. It's actually quite funny. I told the chair that she needs to be careful when she sends out a speech for something, you never give a writer the permission to embellish. LOL I basically rewrote the entire thing but the message was still there. She said she loved it and I did get some applause at the end of my part. It helps when you have one of the more exciting parts and are able to end it with a shouting chant of "FIGHT BACK".
The rest of the night was filled with varying activities, specialty laps, etc. It really started dying down around midnight and continued throughout the remainder of the night. However, John and I stayed all night and were there to release the balloons at 6 AM. I really found it to be awesome and I loved captaining the team this year. We were awarded the silver team award for the money we raised and we finished second of all the teams before putting in the fundraisers from Relay.
John and I both crashed until around 1:30 PM and we agreed we would go dancing Saturday night. When I took my shower, I realized that a fall I took early in the day of Relay, did quite the number on my ankle. It was quite purple and John almost wouldn't let me dance. I'm glad he changed his mind though after I convinced him it really doesn't hurt and that it's probably just bruised.
We went dancing Saturday night. I think we were able to get in three tips and it felt good to be back on the dance floor. I didn't realize how much I had missed dance. It really is one of the best date nights you can have and there are a lot of very wonderful people that square dance as well.
Today is Father's Day so Happy Father's Day to all of you dads out there!!! We are getting ready to go grocery shopping and then over to my parents to unload the trailer from all the Relay stuff we shoved in there Saturday morning. I am very sore today from the knees down. I think I should have stretched out better or need to get back to walking nightly so that I don't have this problem. :)
It's been over a week now since my last seizure so I do believe that we've got the right dosage of meds going into my system now. Now I just have to wait out the 6 months grounding from driving and I'll be back to normal.
Well, I've got to wrap this up. I'm sure there will be more updates now that Relay is over and I have that time back.
Sunday, June 21, 2009
Wow, this weekend has been wild, crazy, and a lot of fun!
Tuesday, June 16, 2009
Well, my appointment with the neurologist went as good as I expected it would. He was happy the seizures were under control now and felt that as long as there were no seizures we'd leave the dosage alone. The EEG I had that Monday looked good and there was nothing that was out of the ordinary in it. He is certain it is scar tissue caused from surgery and radiation. We always knew this was a risk because scar tissue can cause problems with seizures and there has been a lot of torture to my brain over the last year and thus a lot of scar tissue.
Anyway, he told me he didn't see a problem with me returning to work as long as I felt good and I'm grounded from driving for six months following my last seizure per state law. He wants me to report to him if I have any other seizures so he can increase the dosage and carry on with the MRI for August as previously determined. All in all he said I seemed pretty sound neurologically and we'll just put this one up as one of the benefits to living with brain cancer. *Smiles sarcastically*
Well, I just wanted to report.
Saturday, June 13, 2009
After having between 30 and 40 simple partial seizures on Wednesday and only 9 on Thursday, I have not had a seizure since 9:30 on Thursday night!!! You don't realize how good something as simple as not having a seizure in 36 hours can be until you've dealt with them with high frequency for a few days.
Now my attention turns do other things. I need to get my son ready for camp and John and I will take him there Sunday evening. I am also doing final things for Relay. I have trees to finish, posters to make, packing to do, and of course the final team email to prepare and send. Monday I get to go get my partial fitted for my teeth and I'm hoping that I get to keep a set. We'll see how it turns out. I also have a graduation party tonight for my Harry Potter group Plano Hogwarts. I am the first ever graduate at the site and I'm throwing a huge party. There will also be a surprise but I can't tell you what that is or it wouldn't be a surprise.
Other than all that and hopefully no more seizures, I see the neurologist on Tuesday and I'm pretty sure there will be an MRI in the coming week. I will report what I find out after Tuesday. Friday is Relay For Life. If you are in the area, please come out and support us!!! I'd love to see many of you there. It's at Lincoln High School and it's from 6 PM til 6 AM! From 8 PM until 9 PM I will be square dancing as part of the entertainment for the night so for those that have not seen me dance, come on out and get a good laugh.
I am also hoping to attend our first square dance in several months Saturday night but it will completely depend on how tired I am following the all-nighter on Friday.
Wednesday, June 10, 2009
Today is the one year anniversary of my brain surgery. Here is a special little treat for you that I've been working on. A year and a bit more in pictures. (Scott, you might want to skip this post.)
It's sad to say that you are getting used to something that throws a wrench in your day but I'm getting used to my simple partial seizures. I've had around 40 of these today but honestly some of the time I don't even realize they are occurring. Sometimes they come in the form of extreme euphoria that causes me to not only think I'm extremely happy but to make my mouth smile involuntarily. Other times, of late, they are just coming as fluttering of the eyes or my eyes moving very quickly. They seem to come in spurts of 5 or 6 in a short period of time with a large gap of time between. They only last from 5 to 15 seconds and most of the time those around me don't even realize I am having them unless the elation comes at an inappropriate time or when I am in the middle of a conversation with someone. Even then it's usually just a slight pause until it passes.
Today I went by work in order to copy some things to my laptop to work on from home. It was good seeing everyone and letting a few of the more worrisome ones know I am ok. I have been having more seizures today but I think it is more because I didn't sleep well last night then the fact I have been more active today. I am looking forward to being able to go back to work on the 22nd. It will hopefully be good for my seizures as well if I can keep my mind occupied on other things. Not that I am thinking about them a whole lot but having something else to keep me in line might not be all too bad.
I think the worst part is being "grounded" for the next six months. John won't even let me drive the riding mower to mow the grass!!! Not driving doesn't bother me near as much other than having to rearrange my schedule at work in order to ride in with my parents and having to tell my son he can't do certain things because of John's schedule and my inability to drive. I just wish these things would have waited until after Relay next weekend. I have a ton I need to do this and next week and I will be depending on others to take me to do all of it. As if rearranging things for doctor's appointments isn't bad enough, now I also have to arrange for rides. *sigh*
I wish to thank everyone for all their prayers and offers of assistance. My family and I appreciate them greatly and you can bet we will be taking some of you up on these offers as we need them.
I hope to see everyone that I can at Relay on the 19th. With a little luck I will be out there dancing at 8 PM for the square dance and again saturday night if I'm not too exhausted.
Huggles to all,
-- Squiggles (Long story, I'll explain next time. LOL)
Tuesday, June 9, 2009
Today has been much quieter than yesterday was but things have not completely calmed down. I was in contact with my doctor today and what I am experiencing is normal and could last for a week or more before settling down. All day I have been having what is known as Simple Partial Seizures. They are not near as severe as they were yesterday and doesn't affect me near as much but they are there.
Basically, the new seizures give me a sudden sense of euphoria and I smile for no reason, most of the time when it is inappropriate. This will last for a few seconds and the corner of my mouth will twitch. Again, I am fully conscious and I don't lose my balance or anything but I am unable to speak when these occur. They only last for a few seconds now. Maybe 30 seconds at the most. They are just really annoying and come quite frequently. I'm guessing I've had 30 today. I guess we'll find out more when I see the doctor on Tuesday.
I am hoping to swing by work tomorrow to visit and set some things up so I can work more easily from home. Unfortunately, I hadn't planned on working from home this week so I didn't prepare for it by moving files over to my laptop. This will be my plan tomorrow and to show everyone that I am ok, despite the seizures. My son will go with me so if there is anything that goes goofy, he'll be there.
I've basically started a new topic in my blog. Not that I've really wanted to open this topic but it breathes some life back into it. Tomorrow is the one year anniversary of my surgery. If things go well, I'll have a little treat to post tomorrow.
He's really been good today, helping me out and being here. I don't even think that my partial seizures worry him anymore. It's sad that a 12 year old has to go through watching these but at the same time, he's my hero more than once now and I think he is a great son.
Thank you everyone for all of your messages and well wishes to both he and I. I love you all. *huggles*
Monday, June 8, 2009
This was not the way I wanted to spend the just shy of 1 year anniversary of my surgery.
Some of you may have already heard about this but today, my guardian angel (aka my son) possibly saved my life (and his) again. This morning, while I was driving to work, I had a seizure for the first time ever. While having the seizure, it caused me to veer to the left side of the road. My son realized this was happening just as the front tire hit the concrete barrier on a bridge and was able to pull the wheel and get us back on the road. Had he not thought quickly and done this, we might have both been seriously hurt.
I managed to get the car to a parking lot and wait for John to get there. While waiting I had two more seizures. I was able to tell when they were going to come on because I got a sense of euphoria and my mouth would switch and attempt to smile even when there was no reason. This would last about 2 seconds before it would put me into a full complex partial seizure. My eyes would flutter and my eyes rolled up into the back of my head. My neck would also stiffen to the left. I never lost consciousness and I could hear everything that was said but I was unable to respond to anyone in any way.
After John got there, we headed to the ER per my neurologist's instructions. On the way there I had another seizure the same as the previous three. Luckily, the wait at the ER wasn't bad at all and I was seen almost immediately. I had another seizure while the doctor was in talking with me. He was able to get a solid diagnosis of complex partial seizure. After talking to my neurologist, I received a shot of Ativan which is a quick acting drug that will stop all seizures but it only lasts a short while. I was also started on the Keppra (500 mg) drug, which I will take twice a day for probably the rest of my life.
After I was released from the hospital, I had to go to the clinic to have an EEG done. An EEG tests your brain waves and monitors to see if anything is misfiring and causing the seizures. I will not know the results of this test until I see my Neurologist next Tuesday.
I have not had a seizure since 8:30AM when I had it with the doctor. With any luck I will not have any more and we can start the long process of monitoring. I will not be able to drive for 6 months after it is proven that the seizures are under control.
The Neurologist and the ER doctor both believe they were caused from scar tissue that is resultant from surgery and radiation. We were told even before I had surgery that I was a risk for seizures and they told me multiple times that radiation can cause side-effects for up to 10 years. I am sure that my neurologist will order an MRI when I see him but for now we are all pretty certain it's scar tissue from radiation.
I wanted to make sure and update everyone. I will keep you all posted on what is going on. For now, all is well but this week will be a big test.