Well, my 3-year tumorversary came and went yesterday. I spent it at home because my brain decided to have one of its "off" days yesterday. Basically, my brain will every once in a while decide to shut down which prevents me from doing any critical thinking. Also avoiding over-stimulation is a must as well. I imagine it to be like my brain trying to run through quicksand, or as though it's running in a hamster wheel. It also sometimes feel like my brain is floating outside of my cranium and detached from my body. Weird sensations all around.
I can't quite put my finger on why this occurrences happen. Not sure if it's from stress (likely culprit) or from something else. It's come on both in times of high and low stress, so who knows. I think maybe this episode occurred from my mountain bike escapade from this past Saturday. I went on a route I haven't ridden in three years now. It's rather steep with a good amount of elevation in a relative short amount of distance. I may have pushed too hard this time around as I was in oxygen deprivation for a longer period than I normally am. Typically after a climb, if I rest a bit, then I'm back to normal. However, after the climbs on this ride, it felt different, like the light-headedness just wouldn't go away. Even on Sunday I felt off and my brain just didn't seem right. Unfortunately I can pinpoint exactly what it felt like, but just felt off.
So normally when my brain decides to shut down, all I can really do is try and let it veg and not do anything. I awoke this morning feeling a little better, but as of this moment, I still feel somewhat off. I guess it typically takes me 2-3 days to get back to "normal" levels when this occurs. I thought about taking the day off from work today as well, but it's been so busy that I couldn't afford to miss another day. Like so many times, I get to start thinking about my situation. I start thinking about what a bummer that I'm going through this episode. Then start thinking about how this episode is another reminder that I have brain cancer, then another reminder that I'm not normal, then it spirals down to the fear of missing work and decrease work efficiency, then potentially losing my job, then my insurance, livelihood, etc...Oh what a wicked cycle it is.
The odd thing is that, I've never really had the thought of "Why me?" cross my mind. It's always been mainly, "Why now?" Like this brain cancer and episodes have been and are more of an annoyance more than anything. I hope not to cross the line and hoping that I can stay behind the line. Anyway, I guess a happy 3-year tumorversary to me.
Wednesday, February 12, 2014
Saturday, January 25, 2014
1/21/14 MRI Result
My routine 3-month MRI scan this past Tuesday shows my tumor is remaining table. My next scan will be three months from now in April. Dr. Hu stated that if things remain the way they are, then he'll likely move me to a 4-month cycle.
Not sure if it's because my folks accompanied me this time, but Dr. Hu provided a summarized overview of steps that can be taken in the event there is regrowth. I think he did this to give my folks a better understanding of the situation since they don't typically come with me. Anyway, I'm glad he did because I'm sure it was beneficial to hear it directly from the doctor.
Although my scan shows everything to be stable, this week hasn't been so great. Actually, the past couple of weeks, I've been experience dull headaches accompanied with the usual hyperactive tinnitus. However, this past Wednesday my dull headache became rather acute towards the latter half of the day and lasted through the night. I haven't had this bad of a headache in a long while. I didn't get any sleep at all Wednesday night as my headache was pounding and ended up missing work. Veggie out Thursday helped subside the headache back to a dull one, but it became acute once again as the evening came around. Fortunately, it wasn't as bad as the previous night, but I still only got a few hours of sleep through the night. When yesterdat morning came around, I still felt out of it and missed another day of work.
Well, my brain has improved this today, but I can still sense being "off" from my "normal" self. I'm not certain, but my headache is likely from stress at work, or overstimulation from somewhere. Maybe it's from tapering off of the Keppra, who knows. Maybe all of the above. However, I do find veggie out to help, though I'm having trouble writing this entry which is a bit disconcerting.
Anyway, hoping things will improve the next few days and I'm looking forward to Monday being the last time I'll have to take Keppra for the foreseeable future.
Not sure if it's because my folks accompanied me this time, but Dr. Hu provided a summarized overview of steps that can be taken in the event there is regrowth. I think he did this to give my folks a better understanding of the situation since they don't typically come with me. Anyway, I'm glad he did because I'm sure it was beneficial to hear it directly from the doctor.
Although my scan shows everything to be stable, this week hasn't been so great. Actually, the past couple of weeks, I've been experience dull headaches accompanied with the usual hyperactive tinnitus. However, this past Wednesday my dull headache became rather acute towards the latter half of the day and lasted through the night. I haven't had this bad of a headache in a long while. I didn't get any sleep at all Wednesday night as my headache was pounding and ended up missing work. Veggie out Thursday helped subside the headache back to a dull one, but it became acute once again as the evening came around. Fortunately, it wasn't as bad as the previous night, but I still only got a few hours of sleep through the night. When yesterdat morning came around, I still felt out of it and missed another day of work.
Well, my brain has improved this today, but I can still sense being "off" from my "normal" self. I'm not certain, but my headache is likely from stress at work, or overstimulation from somewhere. Maybe it's from tapering off of the Keppra, who knows. Maybe all of the above. However, I do find veggie out to help, though I'm having trouble writing this entry which is a bit disconcerting.
Anyway, hoping things will improve the next few days and I'm looking forward to Monday being the last time I'll have to take Keppra for the foreseeable future.
Wednesday, January 15, 2014
Finally got a chance to watch Before Midnight and this dialogue really stuck out. Living in the unknown can be really draining and the since my diagnosis in 2011, that's all my life has been, ONE BIG UNKNOWN. It was unknown in my initial diagnosis whether I had two masses in my brain or just one. It was unknown whether I needed an spinal tap or not. It was unknown whether I was experiencing epileptic seizures or not. It was unknown whether the anti-seizure medication would help. It was unknown when if I might have a tonic clonic/grand mal seizure. It was unknown whether I'd ever get rid of the balance issues I had. It was unknown if radiation therapy or chemotherapy would be the best choice. It is unknown whether I'll be here 2-3 years from now. It is unknown what my quality of life will be. It is unknown whether I should just cash out my 401K. It is unknown whether to save for the long-term or to just live for now.
So many unknowns...I've thought about what is elaborated below. The finality of the situation brings about a certainty that is welcomed.
CELINE: Yeah. Do you remember this friend of mine? George, from New York.
JESSE: No.
CELINE: Oh, no, that was before. That was before.
JESSE: What was?
CELINE: He was this friend of mine that, when he found out he had leukemia, and he was probably going to die, he confessed to me that the first thing that came to his mind was relief.
JESSE: Relief? But why?
CELINE: Well, before he found out he had nine months to live he was always so worried about money, and now his thought was, great! I have more than enough money to live for the next nine months, I've made it!
JESSE: (Laughing) Oh, okay.
CELINE: And then he was finally able to enjoy everything about life, even like being stuck in traffic. He would just enjoy looking at people... staring at their faces. Just little things.
So many unknowns...I've thought about what is elaborated below. The finality of the situation brings about a certainty that is welcomed.
CELINE: Yeah. Do you remember this friend of mine? George, from New York.
JESSE: No.
CELINE: Oh, no, that was before. That was before.
JESSE: What was?
CELINE: He was this friend of mine that, when he found out he had leukemia, and he was probably going to die, he confessed to me that the first thing that came to his mind was relief.
JESSE: Relief? But why?
CELINE: Well, before he found out he had nine months to live he was always so worried about money, and now his thought was, great! I have more than enough money to live for the next nine months, I've made it!
JESSE: (Laughing) Oh, okay.
CELINE: And then he was finally able to enjoy everything about life, even like being stuck in traffic. He would just enjoy looking at people... staring at their faces. Just little things.
Monday, January 13, 2014
Countdown to being off meds T-Minus 2 Weeks
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.
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.
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
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