Saturday, December 11, 2010
Thursday, December 2, 2010
Saturday, November 27, 2010
Wednesday, November 17, 2010
Ok, so it's a day late. Had a couple of rough mind days so...
Monday, November 8, 2010
Sunday, November 7, 2010
I have tossed this post around quite a bit since I had surgery but never really sat down to type it. I have not talked much in my updates about the day of surgery. (Mainly because there are just a few points that stand out and I don't remember much of the rest of it.) What stands out? The horrible nausea I had for the first time in my life after being under anesthesia, the pain level higher than I've ever felt it, and my angel in the night. :)
Saturday, November 6, 2010
Here the weekend has just started and I'm already looking ahead into next week. Seems kind of backwards, I know. I just know from experience with my first surgery that the weekends are going to be boring. John wants to be home and enjoy the weekend when I'd rather be out doing something. *sigh* Oh well, can't win them all I guess. I will admit that I'm a bit overstimulated from the week. I remember this from my first recovery as well. There's a firm line between having too much activity going on in the house and not enough. Since I only had about half a day to myself all last week, I didn't get that total down-time that I really needed. You know, no TV, no one moving around, just me and my mind and nothing. Maybe it isn't possible to know what I'm talking about. It seems to be a brain thing. I hear comments about over-stimulation from background noise and the like from my brain support groups and how it tires you more than anything else you can do. I think that's what I'm hitting going into the afternoon today.
Wednesday, November 3, 2010
Sunday, October 31, 2010
Saturday, October 30, 2010
We are lounging in the hotel room for another few but then we are going to hit the road for home. It's a bit later than we originally intended but we both were sleeping so great we got a late start. We're both very ready to be back home in our own beds and I'm ready for my own bathroom so I can clean up properly and get my head back to normal feeling.
Friday, October 29, 2010
Ok, sorry I didn't post this immediately but by the time we got back to the hotel I was tired so I rested. Here's the low-down on what we found out at the doctor today.
-- Amy - Fight Like a Girl!!!
Well, this will not be a super long update but I figured I better send something out today since things are changing a bit and I just need to vent a bit as well.
Thursday, October 28, 2010
Well, I've officially been discharged. I am going to get cleaned up and feel normal again and then I'm released to go. We will be staying in Rochester tonight and I have an appointment with my Neuro-Oncologist tomorrow afternoon so we will be staying a second night as well and coming home on Saturday. YIPPEE!!!
I still have at least one doctor I need to see today (the Neuro-Oncologist) but in all essence I have been released by the Neuro Surgeon. Everything looks great, they were very pleased with what they were able to remove, and they agree there is no reason to keep my on the steroids (the NO will make the taper decision though) since they removed an area the size of his fist from my head. Needless to say, swelling should not be an issue. :)
Wednesday, October 27, 2010
Well, if things keep going as they are, they are talking about the possibility of me being released tomorrow. This will be one day shorter than the last one.
Tuesday, October 26, 2010
Monday, October 25, 2010
Well, this will probably be the last major update for around 24 hours. There might be a few updates from John over the course of the day tomorrow but I want to put the message out now that there will not be any proper updates on status of how things are going and he will NOT know anything until around 7 PM CST tomorrow. They are saying it is an 8-10 hour procedure and he will probably not see me for 10-12 hours after I start pre-op at 5:30 AM. Therefore, it is likely to be a quiet day with the exception of maybe a couple of status messages late afternoon as I get moved from op to PACU.
Sunday, October 24, 2010
Thursday, October 21, 2010
I am not typically a whiner but as I sit here at 3 AM this morning having been awaken after only 6 hours of good sleep with a sudden craving for food and to get out of bed, I figured what better quiet time then to discuss the biggest bane of my existence... steroids.
I do know that, while I feel like crud while on the Prednisone, my symptoms with both the more "tolerable to me" steroid and the lessons I've learned has at least made my current episode manageable. It always helps to have a good doctor that understands everyone reacts differently to medications and is able to help you get on what is comfortable and effective for you. I think there's a good chance that had he not agreed that if the Prednisone is taking enough of the pressure and swelling in my head down that I can function fairly normally and switched me to Decadron because that is the standard practice... I wouldn't be sitting here calmly typing or mentally preparing for this next surgery. I would be in a daze and technically unable to make my own medical decisions. (I still often wonder if I would have done radiation so readily after surgery if I had not been on the Decadron. I really don't think I was mentally competent enough at that stage to have been making that decision.)
Wednesday, October 20, 2010
Friday, October 15, 2010
While no one looks forward to any surgery and especially not a second I feel very confident and good about the route we are preparing to take for the latest obstacle for me as a result of the brain cancer world.
Wednesday, October 13, 2010
I'm so far behind on updates I'm not even sure what I have posted about and what I haven't. Therefore I apologize ahead of time if you get repeat information or things are in a really unusual order. Got a lot to update on.
Wednesday, September 1, 2010
We had carefully planned where we were going to stay while staying at Disney World. We all agreed we had saved long and hard for this trip so we were going to do it as all out as possible. Besides we had the equivalent of $2500 in Disney Reward Points to use so we could afford to go a little more all out. In the end, we felt that Disney's Animal Kingdom Lodge was the best choice for our family. We were right. :)
Animal Kingdom Lodge has it's own savannas with animals and the hotel is around these savannas. We were staying at the Sunset Savanna and it was just breathtaking. We were on the second floor so when the giraffe came around, we were almost eye to eye with them. They couldn't get to the actual balcony but I'd say they were 15 to 20 feet from us so you really couldn't get much closer. There were also Ankora cattle, cranes, various antelope, flamingos, storks, gazelle, okapi, Zebras, and various other birds and animals.
The first night we were there we walked out onto our balcony and were met with the following.
At one point in the evening we were met by five giraffes playing just 20 feet from our balcony and five Ankoras grazed right in front of us. Unfortunately, it was too dark to get decent pictures at this point.
I guess I got ahead of myself a bit here. The rooms at Animal Kingdom Lodge were just beautiful and totally amazing. The coloring of the room was gorgeous deep red (almost the color I would love to have in my great room) and the bath area was really neat with a vanity fit for a queen. The lodge itself was also beautiful with rich African decor throughout and it was a true lesson in African history. It was truly beautiful.
Truly the trip of a lifetime!!!
Sorry it has taken me so long to get an update out here on our trip. I really should have done it as soon as possible so that there wasn't any opportunity for anyone to put a negative spin on the great trip. However, I will do my best to give a great accounting of it, without letting certain people's view cloud the wonderful time we had.
Anyway, we left home on Friday, July 30 heading for Lexington, South Carolina. We had a nice, fairly uneventful drive with beautiful scenery as we drove through the mountains. The fact it rained most of the way didn't bother us a bit other than the pictures we attempted to take didn't always turn out.
We stopped Friday night in Kentucky then continued to SC. We arrived in Lexington and were greeted my my husband's Aunts, Uncles, Grandma, and cousins. All of whom I have never met and he hasn't seen for a very long time. They had a glorious feast for us that night and we really enjoyed the bonding and conversation.
It was great to meet most of my husband's family for the first time. They were all very great and I loved talking with them. His Uncle Tim and Aunt Becky were so nice to let us stay there for a couple of days so that we could bond. I really wish we could have spent more time together for we all got along amazingly. It was like we had known each other and saw each other frequently our entire lives. We will definitely all have to get together again sometime soon. Maybe next time up in our area.
The beautiful, young lady on the right is my husband's cousin and was in diapers the last time my husband saw this part of his family... Now she's a Southern beauty Queen. ------------->
We left South Carolina on Monday, September 2 around midday and drove to Florida arriving at Animal Kingdom Lodge; Jambo House early afternoon.
The entire crew. Left to Right, top, middle, bottom: Amy (me), Jazer (my son), Aunt Becky, Tyler (cousin), Aunt Becky, Grandma Ester, Ellen (cousin), Uncle Tim, John (my hubby), and Travis (cousin), Not pictured David (cousin)
Friday, July 30, 2010
...or at least I'm hoping that's the plan. It's been a crazy few months but let's hope we're back into normal mode soon.
- I am 2 years and 1 month past the partial resection of my grade three brain tumor. (I can't believe I missed writing a post on the 2 year surgi-versary!!!)
- It has been almost 22 months since I completed external beam radiation.
- I have been seizure free for 13.5 months.
- It has been 3 years since I was hit in the face with a baseball that led to the early discovery of my brain tumor approximately a month later.
Tuesday, June 15, 2010
Sorry I'm so delayed in sending out this update. It has been a crazy several days so there has not been much time for updating.
Tuesday, June 8, 2010
It was one year ago today that I had my first seizure. I remember things like it was yesterday. I didn't sleep well at all that night but rather I tossed and turned most of the night. My mind kept racing but nothing that I felt was all that abnormal. I got up as I normally did and got ready for work and hurried my son along since he was going to his great grandma's that day. I felt a little sick to my stomach and unexpectedly tired that morning but didn't think anything of it.
I noticed shortly after I reached my exit to the Interstate that I really did not feel right. I remember one instance where I felt like I blanked out for a second and I found myself in the third lane without remembering how I got there. No one was around and I assumed I was just tired and trailed off so I continued on, a bit more cautious.
It was several miles down the road, closer to Springfield than to home when I remember looking ahead and seeing a semi in front of me and making the conscious decision to get into the left lane to pass him. For some reason this was funny to me and I felt my mouth twitch into a smile. A second later I was staring at the roof of my car and I had no idea why. I could hear my son tapping me on the shoulder and calling "mom, mom" but I couldn't respond to him. I felt myself mentally fighting to get my head back facing the front when I heard the wheel hit something briefly. By the time I finally had both hand back on the wheel and my eyes looking ahead again, my son had us back on the road. I could tell he was scared and while I still wasn't 100% sure what had happened, I was pretty sure it was a seizure based on what I had heard about them.
Not daring to pull over on the interstate, I told my son to call his dad but to keep a close eye on me and grab the wheel if I started acting funny. He handed me the cell phone and I told John I was going to take the next exit but he better come get me. I actually missed that exit because it was one I was not familiar with and by the time I got close to it, it was by me. I was able to get us safely to the parking lot of a car dealer and parked. John was on his way and my son was with me.
I called grandma to tell her that he wouldn't be there and then called my mom because I knew she would probably call her to ask what was wrong with me. I remember telling her I think I had a seizure and I think I managed to tell her where I was before I again had the feeling something was funny and the smile came across me. I was standing outside the car and while I could feel my leg a bit unsteady and could hear her on the phone, I was unable to respond. Eventually my son got the phone and my seizure ended.
My mom and dad arrived and my mom called my doctor. While she was on the phone with the nurse, I had another seizure. I remember her making the comment to find something for me to bite on and I kept trying to shake my head no but couldn't. The nurse told her not to do that and to get me to the ER.
Shortly after this, John made it from work to me and he drove me to the hospital. I had another seizure in the car with him. I remember him gripping my hand when I had it. I was quickly admitted at the ER and they put an IV into me. John and I told what happened several times. While the doctor was in to check on me, I had what would be my last complex partial seizure. He had asked me a question and I went to answer him. I again got the feeling something was funny and the seizure began. I think this was one of the longest I had. He held my left hand and called my name several times. John held my right hand and talked to me. When it ended, they gave me a shot of Attivan, a fast acting medicine that will halt seizures.
I was extremely tired after getting this and curled up dozing while John sorted things out to get me dismissed. I would be starting on Keppra and the neurologist wanted me to have an EEG. John drove me to the office to get my EEG. Unlike the first EEG I had, I found it hard to stay awake for the test rather than finding it hard to sleep. After it was finished, we headed home.
Over the next two days, I would have several simple partial seizures that were simply a feeling of euphoria and twitching of my mouth. During these, I could communicate although not talk and could hear everything that went on. I never lost consciousness, my balance, or even my place in the conversation when it was over. Luckily, as quickly as they began they ended and I started my six months of not being allowed to drive.
I'm sure there are things that I have missed in my recount of what happened but I do know this... it is an experience I hope I never have to experience again. Seeing the one year mark come with no further seizures makes me very happy. :)