Latest medical update. Sorry, I feel like I've been wrapped up in my existential quagmire too much and haven't mentioned much about the medical side of things. So a few weeks ago, I met Dr. Eric Wilkinson, an ENT from the House Ear Clinic. Turns out that I have tinnitus which wasn't very surprising. My tinnitus seems like a result of my craniotomy as things have shifted around somewhat on my right side. From what I've read and heard, it can be a common result of craniotomies. Luckily, the ringing I have isn't too bad and I don't find it too annoying most of the time. The person who I feel sorry for was one of my audiologist. He has tinnitus as well and described it as sizzling bacon! That would be absolute torture for me always having the thought of bacon on my mind even though I'm pretty much on a vegan diet now...lol
One surprising thing was that I had been pronouncing it 'tin-night-us' when it's really pronounces, 'tin-nee-tus.' Anyway, Dr. Wilkinson prescribed me a B-complex supplement with the main ingredient being bioflavonoid. It's an extract that can be had from lemon and orange peels. It's suppose to create better circulation in the inner ear blood vessels and therefore provide some tinnitus relief.
Regarding the dizziness and wooziness I had been feeling, Dr. Wilkinson sent me to the Tustin Hearing Center to get a test called videonystagmography (VNG), which tests for dizziness and whether it may be from an inner ear issue. I had this test done a couple of weeks ago and will be meeting Dr. Wilkinson again on April 3 to follow up on the results. According to the audiologist, there were some abnormalities when pertaining to my right ear. The the VNG test consisted of having me wear these specially made goggles that tracked my eye moments. The first parts of the test included following a red dot as it moved along a LED strip attached to the wall. First vertically, and then horizontally. For those of you who are Battlestar Galactica fans, it was like having a staring contest with a Cylon. The second parts of the test consisted of having a tube inserted into my left and right ear one at a time and then having cold and warm water fill the tube. The warm and cold water runs are suppose to elicit certain eye moments responses. For example, having the tube in the right ear with the cold water run, it tricks the mind into thinking that the head is turning/spinning right. Because of this, the natural response from the eyes should be to flicker to the left to find the center. It's similar to when you see figure skaters always turn their heads to the center when they are in a spin rotation. The warm water run will trick the mind into thinking the head is turning/spinning to the left and therefore elicit a natural response for the eyes to flicker to the right. The abnormality I had was with the warm water test in my right ear. My eyes initially flickered normally, i.e., to the right, but then at some point, they started to flicker to the left. Because of this response, there might be something out of whack (sorry for the non-scientific term) with my equilibrium. Anyway, I should find out more when I see my ENT again.
If it is an inner ear issue, not sure if it will be a good or bad thing moving forward. Maybe a positive will be that I can lower my Keppra dosage back down to a more manageable dosage. The current 3,500 mg per day regimen I am on has been kind of tough to handle. The 3,000 mg per day regimen was okay, but the extra 500 mg have been noticeable. A fellow brain tumor survivor mentioned that after her craniotomy, she developed vertigo, but with some relatively simple head exercises conducted by her ENT, it went away. I am hoping it will be the case here as well.
So after my initial meeting with the ENT and the VNG testing, I still had lingering issues with dizziness and feeling off-centered. However, up until yesterday, the past several days had been relatively good. Aside from the ringing and occasional feeling of just feeling "out of it" from time to time, things had been pretty quiet and I had had really no bouts of dizziness or wooziness. It had me thinking that maybe the dizziness and latest issues were just a result of the radiation treatment flaring things up in my head. But yesterday, I woke up and had a semi-bad case of vertigo and nausea which I haven't had for quite some time. It got somewhat better by mid-morning and I decided to go to work, but then it came back in the afternoon and I ended up going home. I had to drive really slow, and make some stops along the way, but luckily traffic was light and I was able to make it home safely. Thought today things would be better, but I the nausea lasted through last night to this morning along with just a lingering feeling of dizziness even though I tried keeping my head propped up. Because I didn't feel any better, I stayed home again. At the moment, things have improved since the morning and I'm hoping it will continue to do so and I'll be able to make it to work tomorrow.
Lastly, my Continuity of Care Services coverage period with Dr. Lai was extended to June 30! Therefore, my original meeting with Dr. Lai scheduled for this past Monday was rescheduled to April 30 to correspond with my 3-month MRI cycle. Everyone is hoping that Blue Shield and the UC Health System will be able to come to an agreement by June 30 and I can continue to see Dr. Lai and receive care up at UCLA.
Thursday, March 29, 2012
Sunday, March 25, 2012
Sunday, March 4, 2012
My Existential Exercise
So I've been having an enlightening discussion with a fellow brain tumor survivor regarding life post-diagnosis and wanted to share some points here.
One particular issue we are discussing is being more acutely aware of our own mortality. Brain tumor survivors are in a way forced to deal with our own mortality and question existence in general in ways that most people don't have to thankfully. The glass menagerie that is the concept known as "functional denial" gets shattered and we're left picking up the pieces and trying to figure out how to put it back together. Regarding the term, "functional denial," to give some context, people know that there's an expiration date for all of us. It's not a matter of if, but of when. However, to prevent people from going crazy from this known truth, people "functionally" deny that death WILL come in order to LIVE.
I believe in general, there are two ways people can choose to live, those that live Carpe Diem! and those who just live their lives. For me personally, before I was diagnosed, because I didn't know my expiration date, although at the same time fully realizing that it could happen at anytime, it was easier to live my life. My functional denial was working at full capacity BECAUSE I didn't know when my end of would come! I lived life like tomorrow would always come for me. Now that I have a possible expiration date of which I have been told, I see life a bit differently. Instead of being blissfully ignorant, I am faced with my own mortality on a daily basis, sometimes minute by minute. Again, ignorance was bliss *sigh* But here I am again faced with the two options of how I want to live life, Karpe Diem! or Just Live It like before.
Before I can decide how I want to live life, I have to answer the "basic" questions of existence such as:
"Who am I?"
"Where am I?"
"What is this place?"
"Where is this place?"
and
"What and why am I doing here?"
*sigh* basic and simple questions.
Considering that it took me like 20 odd something years to "figure" things out the first time around, I am not looking forward to starting over. However, the second iteration can be harder than the first especially if the reason for starting over was not by choice. To me, it's kind of akin to writing a second draft of that great paper or email response you didn't happen to save. The initial response is, an "awww man, for real?!" response. I was stuck in this phase for awhile and still kind of stuck in it. The second is, acceptance of the situation of which I am slowly (very slowly it seems) starting to come to. The third is deciding whether to write a completely new draft, or try to recall the first draft and mimicking it as close as you can from pure recollection. For me, my second draft is hardly ever better than my first draft, and would say it is usually much worse. I normally try to tell myself that to just forget about the first draft and start tabula rasa, but it's typically not possible and then I get frustrated because I just KNOW the rewrite is not as good as the original.
Anyway, I think that one commonality between brain tumor survivors is the loss of this functional denial mechanism. Facing mortality on a daily basis is part of the "new" normal.
One particular issue we are discussing is being more acutely aware of our own mortality. Brain tumor survivors are in a way forced to deal with our own mortality and question existence in general in ways that most people don't have to thankfully. The glass menagerie that is the concept known as "functional denial" gets shattered and we're left picking up the pieces and trying to figure out how to put it back together. Regarding the term, "functional denial," to give some context, people know that there's an expiration date for all of us. It's not a matter of if, but of when. However, to prevent people from going crazy from this known truth, people "functionally" deny that death WILL come in order to LIVE.
I believe in general, there are two ways people can choose to live, those that live Carpe Diem! and those who just live their lives. For me personally, before I was diagnosed, because I didn't know my expiration date, although at the same time fully realizing that it could happen at anytime, it was easier to live my life. My functional denial was working at full capacity BECAUSE I didn't know when my end of would come! I lived life like tomorrow would always come for me. Now that I have a possible expiration date of which I have been told, I see life a bit differently. Instead of being blissfully ignorant, I am faced with my own mortality on a daily basis, sometimes minute by minute. Again, ignorance was bliss *sigh* But here I am again faced with the two options of how I want to live life, Karpe Diem! or Just Live It like before.
Before I can decide how I want to live life, I have to answer the "basic" questions of existence such as:
"Who am I?"
"Where am I?"
"What is this place?"
"Where is this place?"
and
"What and why am I doing here?"
*sigh* basic and simple questions.
Considering that it took me like 20 odd something years to "figure" things out the first time around, I am not looking forward to starting over. However, the second iteration can be harder than the first especially if the reason for starting over was not by choice. To me, it's kind of akin to writing a second draft of that great paper or email response you didn't happen to save. The initial response is, an "awww man, for real?!" response. I was stuck in this phase for awhile and still kind of stuck in it. The second is, acceptance of the situation of which I am slowly (very slowly it seems) starting to come to. The third is deciding whether to write a completely new draft, or try to recall the first draft and mimicking it as close as you can from pure recollection. For me, my second draft is hardly ever better than my first draft, and would say it is usually much worse. I normally try to tell myself that to just forget about the first draft and start tabula rasa, but it's typically not possible and then I get frustrated because I just KNOW the rewrite is not as good as the original.
Anyway, I think that one commonality between brain tumor survivors is the loss of this functional denial mechanism. Facing mortality on a daily basis is part of the "new" normal.
Well, so I made an appointment to meet with an otolaryngologist (ear,
nose, and throat doctor) this coming Tuesday at the behest of Dr. Lai due to the lingering
dizziness and wooziness issues I am still having since mid-January. I
recently had my Keppra dosage upped to 3500mg per day, but it doesn’t
seem to be helping in controlling things. So based on this,
and based on my activity logs I sent to Dr. Lai, he felt that it might
be an inner ear issue that is the culprit. It could be both an inner ear
issue and my tumor, who knows, so seeing an ENT will hopefully clear
things up a bit.
It's been a challenge at doing things especially with work. My work requires tracking and balancing many things at once. There's a natural progression I go through in order to organize everything and right when I am at that cusp of putting everything together, I'll have an episode that will just topple everything and require starting back from square one *sigh* So frustrating.
It's been a challenge at doing things especially with work. My work requires tracking and balancing many things at once. There's a natural progression I go through in order to organize everything and right when I am at that cusp of putting everything together, I'll have an episode that will just topple everything and require starting back from square one *sigh* So frustrating.
Saturday, February 11, 2012
First Week Back at Work
Well, finished my first week back at work. Things have changed
somewhat and I’m getting back into things albeit slowly. So far, it’s
gone okay, although I will have some catching up to do. All my
co-workers have been great in welcoming me back and have been really
accommodating of which I am grateful for. As my company moved to a brand new location during my leave of absence, I had to unpack my things. Before doing this, one of my bosses took me around to reacquaint myself with everyone and to meet my new colleagues. It did feel like being a new employee.
For the most part, it was okay. As I expected, my concentration and focus has not returned to where they were. Again, it was expected, but still disappointing nonetheless. Also, on Tuesday and Wednesday, my simple partial seizures picked up again after several days of them being kept in check. The seizure activity towards the end of the day, especially on Wednesday, kind of put me out of it. I’m not sure what the cause for the breakthroughs might be. I don’t think I’ve been overexerting myself, but who knows with the brain, it is much too complex for me. It had been going relatively okay the several days before Tuesday regarding the seizures, but it seems like another breakthrough *sigh* Thursday and Friday were a bit better in that my simple partial seizures did not completely take me out of it, but just the simple fact they were there was disappointing. I may have to cut back my hours a bit and try to find that balance.
On Tuesday, I realized that it was basically this week a year ago when everything all started (i.e., the body aches, then stomach and headaches, then headaches, then ER, then CT scan, then MRI, then tumor discovery) and today marks my one year tumorversary. Hoping this year will be better than last...
For the most part, it was okay. As I expected, my concentration and focus has not returned to where they were. Again, it was expected, but still disappointing nonetheless. Also, on Tuesday and Wednesday, my simple partial seizures picked up again after several days of them being kept in check. The seizure activity towards the end of the day, especially on Wednesday, kind of put me out of it. I’m not sure what the cause for the breakthroughs might be. I don’t think I’ve been overexerting myself, but who knows with the brain, it is much too complex for me. It had been going relatively okay the several days before Tuesday regarding the seizures, but it seems like another breakthrough *sigh* Thursday and Friday were a bit better in that my simple partial seizures did not completely take me out of it, but just the simple fact they were there was disappointing. I may have to cut back my hours a bit and try to find that balance.
On Tuesday, I realized that it was basically this week a year ago when everything all started (i.e., the body aches, then stomach and headaches, then headaches, then ER, then CT scan, then MRI, then tumor discovery) and today marks my one year tumorversary. Hoping this year will be better than last...
Monday, January 30, 2012
MRI Results
Got my 3-month MRI scan today and also had the follow-up with Dr.
Lai. The good news is that today’s MRI compared to the one from October,
shows a slight shrinkage of the remaining tumor. This is a good sign
because radiation doesn’t always result in shrinkage of the tumor, and
if it does, it normally takes awhile ( at least 2-3 months normally).
So, suffice to say, I was pretty happy to see this.
On the downside, Dr. Lai has again increased my Keppra dosage up to 3,000 mg from 2,500 mg due to my continued issues with simple mini-partial seizures. He also wanted me to switch to the actual Keppra brand from the generic brand (leviteracetam) I have been using to see if it will make a difference. He stated that the actual Keppra brand is normally more accurate in terms of the dosage and would help in ruling out possibly increasing to an even higher dosage. However, this plan to switch to the Keppra brand name was nixed as I recently just had my prescription refilled and have to wait for another 2.5 weeks before I can refill the prescription again. It is disappointing because the plan originally was to try the new 3,000 mg regimen with the Keppra brand for two weeks and check in with Dr. Lai to see if it makes any difference. However, I will go ahead with the 3,000 mg regimen using the generic Keppra prescription that I have.
It took awhile for my body to adjust to the 2,500 mg initially, but once it did after a few weeks, the frequency of seizures went down dramatically starting around mid-December, from 5-8 per day to 5-8 per week. However, for the past two weeks, my seizure activity has increased again and has gone back to about 3-5 episodes per day. I think it might be due to my Keppra prescription turning bad. It had this weird smell emanating from it unlike my previous bottles and my current refill. Fortunately, the severity of the episodes hasn’t gotten any worse. Hoping the increase in the dosage will help. If it does not, it will probably increase to 4,000 mg and if that doesn’t work, then I may need to switch to another anti-convulsant and go see a seizure specialist. Dr. Lai stated that there are generally two types of people who have seizures, those who gets prescribed medication and it works the first time and those who may need to figure out exactly what may work for them (i.e., increase in dosage or change in medication). It seems that I may fall into the latter group. Anyways, will see how the next two week goes. Hopefully, returning to work won't be too much either on the brain.
On the downside, Dr. Lai has again increased my Keppra dosage up to 3,000 mg from 2,500 mg due to my continued issues with simple mini-partial seizures. He also wanted me to switch to the actual Keppra brand from the generic brand (leviteracetam) I have been using to see if it will make a difference. He stated that the actual Keppra brand is normally more accurate in terms of the dosage and would help in ruling out possibly increasing to an even higher dosage. However, this plan to switch to the Keppra brand name was nixed as I recently just had my prescription refilled and have to wait for another 2.5 weeks before I can refill the prescription again. It is disappointing because the plan originally was to try the new 3,000 mg regimen with the Keppra brand for two weeks and check in with Dr. Lai to see if it makes any difference. However, I will go ahead with the 3,000 mg regimen using the generic Keppra prescription that I have.
It took awhile for my body to adjust to the 2,500 mg initially, but once it did after a few weeks, the frequency of seizures went down dramatically starting around mid-December, from 5-8 per day to 5-8 per week. However, for the past two weeks, my seizure activity has increased again and has gone back to about 3-5 episodes per day. I think it might be due to my Keppra prescription turning bad. It had this weird smell emanating from it unlike my previous bottles and my current refill. Fortunately, the severity of the episodes hasn’t gotten any worse. Hoping the increase in the dosage will help. If it does not, it will probably increase to 4,000 mg and if that doesn’t work, then I may need to switch to another anti-convulsant and go see a seizure specialist. Dr. Lai stated that there are generally two types of people who have seizures, those who gets prescribed medication and it works the first time and those who may need to figure out exactly what may work for them (i.e., increase in dosage or change in medication). It seems that I may fall into the latter group. Anyways, will see how the next two week goes. Hopefully, returning to work won't be too much either on the brain.
Sunday, January 22, 2012
Fitting Into Life...
Poem I came across written by a fellow brain tumor survivor:
Fitting Into Life...
Do you ever wonder what it's like
to not fit into this life?
You aren't unhealthy but you are sick
yet you aren't able to make your pick
People get to know you... for who you are
without knowing your secrets afar
Do I tell them... or don't I you wonder
Knowing if you do... it's usually a blunder
You decide it best... you think they should know
Since there is nothing physical to show
How do you do it... there's no manual or book
to teach you the right way and not go amuck
"I have this thing... inside of me"
"It doesn't change who I am or want to be"
"It's a tumor up here... inside my head"
"Sometimes it keeps me all day, in my bed"
"Don't be afraid... no... not that look, please no"
"that look that says "oh no... when will you go""
"I don't need you to feel sorry, be mad, or tense"
"I need your understanding, your love and your patience"
"you see... I'm a fighter with a heart for life"
"and ain't no tumor gonna cause me strife"
"so brighten your face with that big ol smile"
"and hold my hand cause I'll need your strength for a while"
Now is the hard part... the part I struggle with
Because until they were told they didn't even know it
Until I told, I was just another friend
Now I'm a patient... who may not mend.
To say I'm a "normal" person would be a lie
I have issues that could cause me to die
This is why I struggle and fight with my might
Because I know not where I fit into this life
Fitting Into Life...
Do you ever wonder what it's like
to not fit into this life?
You aren't unhealthy but you are sick
yet you aren't able to make your pick
People get to know you... for who you are
without knowing your secrets afar
Do I tell them... or don't I you wonder
Knowing if you do... it's usually a blunder
You decide it best... you think they should know
Since there is nothing physical to show
How do you do it... there's no manual or book
to teach you the right way and not go amuck
"I have this thing... inside of me"
"It doesn't change who I am or want to be"
"It's a tumor up here... inside my head"
"Sometimes it keeps me all day, in my bed"
"Don't be afraid... no... not that look, please no"
"that look that says "oh no... when will you go""
"I don't need you to feel sorry, be mad, or tense"
"I need your understanding, your love and your patience"
"you see... I'm a fighter with a heart for life"
"and ain't no tumor gonna cause me strife"
"so brighten your face with that big ol smile"
"and hold my hand cause I'll need your strength for a while"
Now is the hard part... the part I struggle with
Because until they were told they didn't even know it
Until I told, I was just another friend
Now I'm a patient... who may not mend.
To say I'm a "normal" person would be a lie
I have issues that could cause me to die
This is why I struggle and fight with my might
Because I know not where I fit into this life
Subscribe to:
Posts (Atom)