I met with Dr. Chung today and he deemed it would be okay for me to get off Keppra. Since our last meeting about 6 months ago, I haven't had many symptoms that would be deemed to be consistent with those of a seizure. There have bouts of dizziness here and there, but they've been less and less frequent and the circumstances surrounding them seemed less related to a seizure-episode.
Per standard protocol in getting off any anti-seizure med, I will be on a tapering schedule. Starting tomorrow, I'll only have to take 500mg from my current 1,000mg for the next two weeks. After this time, I can stop completely. Dr. Chung would have liked me to possibly start the taper schedule a bit later after I told him that I'll be busy at my work for the next few months. He mentioned that typically he prefers for a person to taper off a med during a relatively stress free period because stress could trigger seizure activity. However, I decided to start it now because with my job, there is never really a lull period and if there is, it's really unpredictable when it might occur. So if I waited for a lull period, I could be waiting indefinitely. After stating this, Dr. Chung agreed with me and was okay for me to start the tapering schedule now. He did preface it by stating that for the next one to two months, I should try to get as much rest as possible in order to minimize the chances of seizures occurring.
Well, I think this is a positive step and will see if getting off Keppra will help with things overall (e.g., get rid of fatigue, mental dullness, etc...). I'll be meeting with Dr. Chung again in three months.
Monday, January 13, 2014
Wednesday, January 1, 2014
Found out today that Tracey Clarke is no longer with us, that she passed from her struggles with GBM. Though I have never met Tracey, in reading her blog, looking at her art, and reading the postings of Craig, her significant other, Tracey seems like a beautiful person. Someone that would enrich anyone's life that knew her. Rest in peace Tracey...
Tuesday, October 22, 2013
10/22/2013 MRI and Meet with Dr. Hu
Had my routine 3-month interval MRI today at Cedars-Sinai. The appointment was at 9:30 AM so of course I left at 5:45AM to beat the SoCal crush up Interstate 405. Surprisingly, I arrived at 7:30 AM which gave me the opportunity to have breakfast.
I decided to check in early about 45 minutes before my scheduled time and was pleasantly surprised to get called in only a few minutes afterwards. The MRI went as normal. The vein at my right elbow even cooperated this time. It has been shy for the past two years, probably because of overuse from my two stays at the hospitals. So all of my IVs and blood samples have been either at the hands or forearms prior to today. As customary, I fell asleep due to the soothing beats generated by the MRI machine.
Since my scan was completed early, I decided to check in early as well for my meeting with Dr. Hu. Again, to my pleasant surprise, I was shown in and didn't have to wait long for Dr. Hu. The first thing he said was that everything is stable to my great relief. We both then went over my scan from about a year ago to days and everything looks the same. After viewing the scans, Dr. Hu mentioned that he'd like to keep me at the 3-month MRI cycle for my next two MRIs and then will likely move me to the 6-month MRI cycle. I am not sure how I feel about this yet. In a way, it's nice to be on a 3-month MRI schedule because there's less anxiety about what could be going on up there in my brain. However, I suppose the 6-month MRI schedule would in a way signify that circumstances are such that I needn't worry too much about things overall.
I decided to check in early about 45 minutes before my scheduled time and was pleasantly surprised to get called in only a few minutes afterwards. The MRI went as normal. The vein at my right elbow even cooperated this time. It has been shy for the past two years, probably because of overuse from my two stays at the hospitals. So all of my IVs and blood samples have been either at the hands or forearms prior to today. As customary, I fell asleep due to the soothing beats generated by the MRI machine.
Since my scan was completed early, I decided to check in early as well for my meeting with Dr. Hu. Again, to my pleasant surprise, I was shown in and didn't have to wait long for Dr. Hu. The first thing he said was that everything is stable to my great relief. We both then went over my scan from about a year ago to days and everything looks the same. After viewing the scans, Dr. Hu mentioned that he'd like to keep me at the 3-month MRI cycle for my next two MRIs and then will likely move me to the 6-month MRI cycle. I am not sure how I feel about this yet. In a way, it's nice to be on a 3-month MRI schedule because there's less anxiety about what could be going on up there in my brain. However, I suppose the 6-month MRI schedule would in a way signify that circumstances are such that I needn't worry too much about things overall.
Thursday, September 26, 2013
A poem written by Aislinn whom I met on Twitter through the Sunday #btsm chat. Aislinn was kind enough to allow me to share these words:
Staring blankly at a shattered mirror
Where void of emptiness appears surreal
Unbearable silence wandering near
The ghost of whom it will never seem real.
Curiosity in the kindest way
Where words wasted to be too serious
Where the words wasted are taken astray
Creeping melancholy mysterious.
Where plows dig up the soil of growing land
And leave behind the fields filled with forsake
One under the false pretense of command
A barely breathing forgotten mistake.
Keeping close pieces of which I once was
But keeping pieces close only because
Staring blankly at a shattered mirror
Where void of emptiness appears surreal
Unbearable silence wandering near
The ghost of whom it will never seem real.
Curiosity in the kindest way
Where words wasted to be too serious
Where the words wasted are taken astray
Creeping melancholy mysterious.
Where plows dig up the soil of growing land
And leave behind the fields filled with forsake
One under the false pretense of command
A barely breathing forgotten mistake.
Keeping close pieces of which I once was
But keeping pieces close only because
Sunday, September 15, 2013
Went out surfing today for the first time in about 16 years. The result, pretty bad! However, can't be surprised considering I only surfed about 10 times before. However, it was great to just be out there again. The water was warm, the sea air was salty, and the set of waves came in nicely. Now I get to enjoy a few days of really sore arms, the experience of having gone out there, but most importantly, not having the regret of not going.
So why now, after 16 years? I guess it's part of the "don't be a human being, but a human living' mandate given to me by Dr. Wertheimer. Also, I've been recently living with the mindset of, "Might as well..." My loved ones and people who care about me have been encouraging through this ordeal. They've encouraged me to believe that I will live beyond my prognosis, no problem. However, I guess for some, myself included, it's easier said than done.
So why now, after 16 years? I guess it's part of the "don't be a human being, but a human living' mandate given to me by Dr. Wertheimer. Also, I've been recently living with the mindset of, "Might as well..." My loved ones and people who care about me have been encouraging through this ordeal. They've encouraged me to believe that I will live beyond my prognosis, no problem. However, I guess for some, myself included, it's easier said than done.
Sunday, August 4, 2013
2-Year Craniversary Mountain Bike Ride
As a way to celebrate and reflect on being two years removed from my craniotomy, I decided to go for a ride. I've been riding for the two months and slowly have been building up my endurance. The farthest I've managed to ride has been about 16 miles with 2,500 feet of total elevation. Since today is a special day, I wanted to go on a longer ride with more elevation.
In a way, going on a long difficult ride makes me feel like I am living. The more punishing the ride, the more aches I feel in my legs and in my lungs, the more I know that I am still here, that I am a human living and not just a human being who happens to be alive. Also, a part of me feel as though I am riding for those out there who can no longer, unfortunately, do the things they loved before their diagnosis. So the longer ride was my way to reflect on everything.
Before riding again a couple months ago, my last ride was back on Memorial Day in 2011. I was a few months removed from the stereotactic needle brain biopsy. I had still been able to ride after my recovery from this procedure and had actually gone on several rides. I didn't want to give it up. Though I enjoy the struggle and pains that comes with this activity, I knew that the issues I had on the Memorial Day ride were different. They were atypical of the usual struggles a person can deal with on any ride. My head felt so full. The pounding in my head were unlike anything I had experienced before. So on that day, I decided to give up riding.
The weeks and months following my craniotomy, I thought about biking once again. Maybe not on the mountains, but just around town. However, the lingering issues I had with dizziness and wooziness and just my balance in general were roadblocks to getting back on the saddle. But through much help from Debbie Struiksma, my neurologic physical therapist, my symptoms improved little by little over time. Earlier this year, I decided to get on my commuter bike. Not so good, almost crashed into my brother's brand new truck. Then one day, I decided to try again and NO ISSUES! I rode a bit more and more on my commuter. I then had a chance to take out a mountain bike to a local trail and things went good. So about two months ago, I got a new bike and I've been thankful everyday that I am able to ride again.
Today I did this: http://www.mappedometer.com/?maproute=205312
In a way, going on a long difficult ride makes me feel like I am living. The more punishing the ride, the more aches I feel in my legs and in my lungs, the more I know that I am still here, that I am a human living and not just a human being who happens to be alive. Also, a part of me feel as though I am riding for those out there who can no longer, unfortunately, do the things they loved before their diagnosis. So the longer ride was my way to reflect on everything.
Before riding again a couple months ago, my last ride was back on Memorial Day in 2011. I was a few months removed from the stereotactic needle brain biopsy. I had still been able to ride after my recovery from this procedure and had actually gone on several rides. I didn't want to give it up. Though I enjoy the struggle and pains that comes with this activity, I knew that the issues I had on the Memorial Day ride were different. They were atypical of the usual struggles a person can deal with on any ride. My head felt so full. The pounding in my head were unlike anything I had experienced before. So on that day, I decided to give up riding.
The weeks and months following my craniotomy, I thought about biking once again. Maybe not on the mountains, but just around town. However, the lingering issues I had with dizziness and wooziness and just my balance in general were roadblocks to getting back on the saddle. But through much help from Debbie Struiksma, my neurologic physical therapist, my symptoms improved little by little over time. Earlier this year, I decided to get on my commuter bike. Not so good, almost crashed into my brother's brand new truck. Then one day, I decided to try again and NO ISSUES! I rode a bit more and more on my commuter. I then had a chance to take out a mountain bike to a local trail and things went good. So about two months ago, I got a new bike and I've been thankful everyday that I am able to ride again.
Today I did this: http://www.mappedometer.com/?maproute=205312
Thursday, July 25, 2013
Update to July 23 MRI
I had my 3-month MRI up at Cedars Sinai this past Tuesday. Boy, the injection of the dye really hurt this time around. I think it might have been injected a bit to fast. However, as usual, I still fell asleep. Something about the steady vibration and the beat of the machine that just knocks me out.
Well, I met with Dr. Hu afterwards and upon examining the MRI scan, the tumor is remaining stable. No growth or shrinkage. I had somewhat expected that Dr. Hu might recommend moving onto a 6-month cycle so I went ahead and asked him what his typical parameters are in making that decision for his patients.
He informed me that of course it's really case-by-case specific. The usual things he looks at include the type of tumor someone has, the progress someone is making, and the time that has lapsed since surgery. He typically likes to keep his patients on a 3-month cycle for up to two years after surgery. When I asked him that it'll be two years for me a couple weeks from now, he said that in my case he would still like to keep me on the 3-month cycle. The reason primarily is because I am still having issues. The past month haven't been the greatest as there's been an uptick in my bouts of wooziness/dizziness instances of my mind just "shutting" down likely due to fatigue. I've had to take a few days off because I just couldn't get my brain to do any sort of advance critical thinking. There were a few days where my brain would just be literally buzzing and I would have to just "veg" out. It might be because it's been pretty busy at my work and things may be catching up to me. However, I'm not sure.
Anyway, Dr. Hu said that because I'm still having these symptoms, that he would like to remain on the side of caution and have me stay on the 3-month cycle to keep monitor of whether my continued symptoms may or may not be related to new tumor growth. I completely agree with this. At least if I continue to have symptoms and my tumor remains stable, it's something that can be ruled out.
A frustrating aspect of this is that I feel as though my issues with my brain are an equivalent to someone being diagnosed with "irritable bowel syndrome" or "fibromyalgia." My doctors seem to know that I have problems, but aren't sure what the root cause is and are not sure how to possibly treat it. I guess it's hard to treat something when the root cause is unknown. I'm slowly accepting the fact that I may just have plain old brain damage and there's nothing that can be done. I'm almost there, but plan on seeing another neuropsychologist at UCLA this time. I am not placing too much hope, but I'd like to try just one last time to see if there might be something out there to help me with my brain processing issues.
Well, I met with Dr. Hu afterwards and upon examining the MRI scan, the tumor is remaining stable. No growth or shrinkage. I had somewhat expected that Dr. Hu might recommend moving onto a 6-month cycle so I went ahead and asked him what his typical parameters are in making that decision for his patients.
He informed me that of course it's really case-by-case specific. The usual things he looks at include the type of tumor someone has, the progress someone is making, and the time that has lapsed since surgery. He typically likes to keep his patients on a 3-month cycle for up to two years after surgery. When I asked him that it'll be two years for me a couple weeks from now, he said that in my case he would still like to keep me on the 3-month cycle. The reason primarily is because I am still having issues. The past month haven't been the greatest as there's been an uptick in my bouts of wooziness/dizziness instances of my mind just "shutting" down likely due to fatigue. I've had to take a few days off because I just couldn't get my brain to do any sort of advance critical thinking. There were a few days where my brain would just be literally buzzing and I would have to just "veg" out. It might be because it's been pretty busy at my work and things may be catching up to me. However, I'm not sure.
Anyway, Dr. Hu said that because I'm still having these symptoms, that he would like to remain on the side of caution and have me stay on the 3-month cycle to keep monitor of whether my continued symptoms may or may not be related to new tumor growth. I completely agree with this. At least if I continue to have symptoms and my tumor remains stable, it's something that can be ruled out.
A frustrating aspect of this is that I feel as though my issues with my brain are an equivalent to someone being diagnosed with "irritable bowel syndrome" or "fibromyalgia." My doctors seem to know that I have problems, but aren't sure what the root cause is and are not sure how to possibly treat it. I guess it's hard to treat something when the root cause is unknown. I'm slowly accepting the fact that I may just have plain old brain damage and there's nothing that can be done. I'm almost there, but plan on seeing another neuropsychologist at UCLA this time. I am not placing too much hope, but I'd like to try just one last time to see if there might be something out there to help me with my brain processing issues.
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