Yeah Friday! I had my last Doctor's appointment for the week this morning.
I saw the Chemo Doctor this morning. I caught him up on all the info from Duke and he checked me all out. The first thing they do when you get there is take blood. I've never had them mention the blood work until today. My white blood cell count was low. All this is means is that I don't get to start Chemo until Monday. I don't mind waiting a few days.
Yesterday afternoon I had the Neuropsychology test. O M G! Talk about cruel and unusual punishment. The actual test, which were not written test, took a few hours. They do fun stuff like give you a letter and you have to name as many words that begin with it as you can think of. Or give you a pattern and then hand you blocks so you can copy it. Or like the SAT where you have a set of patterns and you have to figure out the next one. OH my favorite. They gave me 10 seconds to look at a picture and then all the time I needed to draw it. I did eh on that but then to top it off at the end of the session, they wanted me to redraw them all again! yeah.....
Anyway, 2 weeks from now I'll get some paperwork on how I did. It should be very interesting. That will include recommendations on jobs. Can you say "Would you like Fries with that?"
Friday, July 10, 2009
Wednesday, July 8, 2009
Short Term Memory
I try to explain what my short term memory is like. I do a lot walking around in rooms without knowing what I was there for to start with which gets me responses like: "Oh I do that all that time." I had to think about good examples so here's a couple that will explain it better.
Example 1:
Ronnie and I purchased some fresh fruit and veggies from a stand today. We had BLTs tonight with the awesome tomatoes and I wanted to have something really good tomorrow night with the other vegetables. We chatted a little about what meat I might eat and I decided I'd be very happy with just veggies. With that Ronnie decided he'd cook some chicken quarters on the grill for himself. All done and we went on.
A couple hours later I'm drooling over the veggies and trying to figure out what to have with them that would be really good for dinner tomorrow night. Ronnie comes in and I ask him what would be good with the veggies. I get the look. He calmly says "honey, remember we talked about it. I was going to cook chicken quarters and you were going to cook the new potatos and squash."
Example 2:
Yesterday I did Wii Fit for 20 minutes and walked out to get the mail. I was tired, very tired. So Hank and I crashed on the couch for at least a couple hours maybe longer.
We finally got up and I was thirsty. I walked into the kitchen for some water. I took a look at the counter and saw mail on it. I wondered if Ronnie had gotten the mail today thinking the mail on the bar was from yesterday. Thinking about it a few minutes I finally figured that yes, I had checked the mail and that was it on the counter. But for a while, I had no idea that I had already checked the mail.
So my crazy memory is a little different than just forgetting what you were going to do.
Tomorrow I'm going back to Duke for the neuropsych testing. I'm really nervous but I'm sure I'll get through it.
Example 1:
Ronnie and I purchased some fresh fruit and veggies from a stand today. We had BLTs tonight with the awesome tomatoes and I wanted to have something really good tomorrow night with the other vegetables. We chatted a little about what meat I might eat and I decided I'd be very happy with just veggies. With that Ronnie decided he'd cook some chicken quarters on the grill for himself. All done and we went on.
A couple hours later I'm drooling over the veggies and trying to figure out what to have with them that would be really good for dinner tomorrow night. Ronnie comes in and I ask him what would be good with the veggies. I get the look. He calmly says "honey, remember we talked about it. I was going to cook chicken quarters and you were going to cook the new potatos and squash."
Example 2:
Yesterday I did Wii Fit for 20 minutes and walked out to get the mail. I was tired, very tired. So Hank and I crashed on the couch for at least a couple hours maybe longer.
We finally got up and I was thirsty. I walked into the kitchen for some water. I took a look at the counter and saw mail on it. I wondered if Ronnie had gotten the mail today thinking the mail on the bar was from yesterday. Thinking about it a few minutes I finally figured that yes, I had checked the mail and that was it on the counter. But for a while, I had no idea that I had already checked the mail.
So my crazy memory is a little different than just forgetting what you were going to do.
Tomorrow I'm going back to Duke for the neuropsych testing. I'm really nervous but I'm sure I'll get through it.
Monday, July 6, 2009
The Week of Doctors
This week is Doctor appointment week. We start out today with the neurologist.
I've been a couple months without a seizure, the longest I've ever been! We've been changing my meds and we're to the point where I'm about to have a seizure so we're going back up on the Dilantin. Why the big deal about the time between seizures? If I go 6 months seizure free I can drive! So I'm excited that it's been this long and would be very sad if I had one now.
It's not just talking about seizures, I have to go through all kinds of cool little tests to check my current status. My favorite part is when they check my balance. I stay up/don't fall down but it's got to be funny to watch. Also, close your eyes and put your finger to your nose. I generally hit somewhere between my eyes and on my nose but not on the tip. I always start laughing when this happens and keep laughing throughout the rest of the test.
Duke has requested another MRI in a couple months. My neurologist has an in-house MRI and I can get my next MRI there. If I read my insurance right that will save me a lot of $$ too!
Otherwise I've had a "normal" day. The thunderstorms kept me awake for hours so I slept all afternoon. Glad I get to sleep in tomorrow!
I've been a couple months without a seizure, the longest I've ever been! We've been changing my meds and we're to the point where I'm about to have a seizure so we're going back up on the Dilantin. Why the big deal about the time between seizures? If I go 6 months seizure free I can drive! So I'm excited that it's been this long and would be very sad if I had one now.
It's not just talking about seizures, I have to go through all kinds of cool little tests to check my current status. My favorite part is when they check my balance. I stay up/don't fall down but it's got to be funny to watch. Also, close your eyes and put your finger to your nose. I generally hit somewhere between my eyes and on my nose but not on the tip. I always start laughing when this happens and keep laughing throughout the rest of the test.
Duke has requested another MRI in a couple months. My neurologist has an in-house MRI and I can get my next MRI there. If I read my insurance right that will save me a lot of $$ too!
Otherwise I've had a "normal" day. The thunderstorms kept me awake for hours so I slept all afternoon. Glad I get to sleep in tomorrow!
Monday, June 29, 2009
Update!
The Cancer Center at Duke is awesome. They believe in fixing both the physical and psychological issues so you get a whole new you. That sounds good to me because the current me isn't too cool.
- I'm going to be doing neuropsychological testing to figure out how my brain is working. Where the deficits are and how we can work on them. They will do the testing yearly to see if I'm getting better.
- They are going to help me do driver training - at Duke, not DMV. Of course, I have to wait until I've been seizure free for 6 months but they will work with me to make sure I'm road ready.
- I'm getting Speech Therapy. Anyone that has talked to me knows I have issues with words and get all flustered and really mess things up.
They are also very blunt. They told me that I'd never be like I was before, get used to it. This is normal and you live with it. This was actually good to hear. I had no idea how I was going to get back to where I was.
They were also very good at knowing how my brain worked. As in not only do I have short term memory problems but I have ADD too. This is not a good combo. Again, anyone that has talked to me knows I'm all over the board. We talked about how to address and work with it.
The best part was the chat with Ronnie on what he can expect of me. Yes, I'm different and here's the best way to work with me now. I noticed he's already using the tips.
I just got scheduled for the neuropsychological testing and I'm excited. It will be interesting to see how it goes.
I guess all this just showed me there is hope out there. Things are different but change is not all bad; you just have to learn to work with the differences.
Monday, June 22, 2009
The Dilemma
I have a small problem. I'm a Carolina Fan (UNC) for those that do not know it. No, I didn't graduate nor attend the college. I actually graduated from East Carolina University. I originally attended State (NCSU) which means school-wise Duke should be my mortal enemy. And it is.
Herein lies my dilemma. Duke University houses the best brain tumor center in the US; maybe the world. Ted Kennedy went to Duke to have his brain tumor removed. That's how good it is. I have an appointment there the end of this week.
So, that being said I still think Duke SUX! I'll now to put a caveat on the statement that it only applies to Coach K and their sports program. The Preston Robert Tisch Brain Tumor Center is the best in the world and they are going to change my life. Please don't make me wear Duke blue.
Herein lies my dilemma. Duke University houses the best brain tumor center in the US; maybe the world. Ted Kennedy went to Duke to have his brain tumor removed. That's how good it is. I have an appointment there the end of this week.
So, that being said I still think Duke SUX! I'll now to put a caveat on the statement that it only applies to Coach K and their sports program. The Preston Robert Tisch Brain Tumor Center is the best in the world and they are going to change my life. Please don't make me wear Duke blue.
Saturday, June 13, 2009
I'm not PG~
Sorry for the delay in posting as I'm back to sleeping 14 hours at a time plus a nap. That means I'm back on regular old chemo which means IT is shrinking!
Ok back to bed now.
OH yeah, I'm not pregnant either. I found out that the chemo stops all the girl stuff and you basically start hitting menopause. That actually explains a lot.
Ok back to bed now.
OH yeah, I'm not pregnant either. I found out that the chemo stops all the girl stuff and you basically start hitting menopause. That actually explains a lot.
Thursday, June 11, 2009
MRI Day - What's it like?
Today was MRI Day. I'm used to taking MRI's; I've done lots. I'm used to the noise, the claustrophobic machine, the IV with contrast and I know if I'm "good" I get ice cream.
It's not taking the test that's the problem - it's the waiting for the results. I should have an answer tomorrow. But between now and then, it's horrible.
For those not in the "know" I still have cancer lurking in my brain. The tumor was removed but there is still some there. I'm sure someone has an exact figure of how much but I don't, not sure I want to really. Anyway, IT had not changed from the time my tumor was removed through the last MRI. That means that even though I had radiation and done loads of chemo, it had not shrunken. But the good news was that it hadn't grown. So this MRI will let us know what's really going on and what we're going to need to do in the future. The plan so to speak might change, probably will change.
Anyway, I wanted to express how anguishing it was to wait for that answer and finally come up with an answer. It's kind of like taking a pregnancy test.
When you take a pregnancy test you already know something is up. You're already freaking out and you need to know the answer. So you have to go out and buy a test. You get the best test you can get (or afford) and rush home. You immediately hit the bathroom and start reading the instructions. You get the Pee in the right place and wait. Hoping that it will be a little - and not a +. For a OH Thank goodness I'm not pregnant and not an Oh CRAP, I'm pregnant.
This is where I am now. I'm waiting to find out if I"m pregnant or not.
*For those wondering why I choose to pick a NO as a good thing I figure we spend 90% of our life trying NOT to get pregnant. Then there's 5% of well, maybe, I don't know, maybe, I'm not sure I might want to ... Then's the 5% of Heck yeah! Let's have a baby!
It's not taking the test that's the problem - it's the waiting for the results. I should have an answer tomorrow. But between now and then, it's horrible.
For those not in the "know" I still have cancer lurking in my brain. The tumor was removed but there is still some there. I'm sure someone has an exact figure of how much but I don't, not sure I want to really. Anyway, IT had not changed from the time my tumor was removed through the last MRI. That means that even though I had radiation and done loads of chemo, it had not shrunken. But the good news was that it hadn't grown. So this MRI will let us know what's really going on and what we're going to need to do in the future. The plan so to speak might change, probably will change.
Anyway, I wanted to express how anguishing it was to wait for that answer and finally come up with an answer. It's kind of like taking a pregnancy test.
When you take a pregnancy test you already know something is up. You're already freaking out and you need to know the answer. So you have to go out and buy a test. You get the best test you can get (or afford) and rush home. You immediately hit the bathroom and start reading the instructions. You get the Pee in the right place and wait. Hoping that it will be a little - and not a +. For a OH Thank goodness I'm not pregnant and not an Oh CRAP, I'm pregnant.
This is where I am now. I'm waiting to find out if I"m pregnant or not.
*For those wondering why I choose to pick a NO as a good thing I figure we spend 90% of our life trying NOT to get pregnant. Then there's 5% of well, maybe, I don't know, maybe, I'm not sure I might want to ... Then's the 5% of Heck yeah! Let's have a baby!
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