4/30/2012 Follow-Up

Saw Dr. Lai today up at UCLA and generally the news was okay I suppose. Based on the lastest MRI, Dr. Lai believes that the tumor is stable. However, it's hard to tell because as I had my last MRI done at a different facility compared to the lastest MRI, he couldn't do an apples to apples comparison. As he explained it, my latest MRI is finer (i.e., more cross-sections were taken) compared to the MRI done back on January 30, 2012. Therefore, the cross-sections don't quite correspond to each other. Due to this, it was impossible to compare the "same" cross-sections (i.e., layer) to each other.

The disconcerting thing is that the remaining mass seems to have grown a bit. At the longest length, the 1/30 MRI showed the remaining tumor at 1.83 cm. However, the latest MRI showed it to be about 2.3 cm. Again, I am a bit concerned, especially since I had three relatively "bad" seizures just last week. However, I will remain as optimistic as I can and try to be as anxiety free as possible. Dr. Lai's explanation seems to make sense. He said that most likely there hasn't been any growth. That the reason why the lastest MRI shows a bigger tumor is because the 1/30 MRI just missed out on the "fattest" (my own term, not his) part of the tumor as the machine used did not take as many cross-sections compared to the machine used for my latest MRI scan. The cut ratio between the latest MRI and the 1/30 MRI is 2 to 1 (e.g., for every 6 layers/cross-sections the latest MRI takes, the 1/30 MRI only takes 3 layers/cross-sections).

As the MRI machine at UCLA is comparable with the MRI machine used for my latest scan as both have the same cut ratio, Dr. Lai showed me my last MRI taken at UCLA, which was before the radiation treatment. Comparing the lastest MRI to it, there is tumor shrinkage. Looking at the same layer, the tumor based on the UCLA MRI measured about 3.15 cm, while again, the latest MRI shows it at 2.3 cm. This made and makes me feel a bit more at ease. Also, Dr. Lai stated that based on his experience that the discrepancy between the 1/30 and the latest MRI really is just due to the cut ratio and that based on the histology of the tumor, that there shouldn't be that much growth right after just having gone through radiation therapy.

Of course, he did add that I should be extra cognizant of any changes and symptoms I have from now until my next follow-up which is June 25. As usual, he stated for me to make sure to let him know of anything that might be out of the ordinary. Again, so thankful for the UCLA email policy and so thankful that Dr. Lai is so responsive as is most of the UCLA staff and doctors I've come across. Normally, my MRI cycle is every 3 months. However, the next MRI is scheduled for June 25 (at only 2 months) because of the ongoing issue between UCLA and Blue Shield and because my Continuity of Care coverage ends on June 30, 2012. In a way, I'm kind of glad that I'll only have to wait 2 months instead of the 3 months considering everything mentioned above. *Sigh* just more uncertainty. This is definitely a long-distance race and not a sprint, so MUST PACE MYSELF.

Oh, as for the rest of the meeting, a new doctor, Dr. Guzman, a neurologist, accompanied Dr. Lai this time around. I explained to him and Dr. Lai about what I've been experiencing the past several weeks. I explained to them about how recently (about 4 weeks ago), up until a week ago, that my symptoms had been changing every few days it seems. For a couple of days, my symptoms would be more like the classic case of vertigo and nausea,  switch back to my more normal symptoms (i.e., flashes of dizziness, wooziness, etc...) for a 2-3 days and then switch back to the vertigo and nausea and so on and so forth.

Last week though, things went back to the norm (i.e., flashes of dizziness), but on Tuesday, I had a relatively prolonged episode. I was sitting reading on my computer when the ringing in my right ear suddenly intensified. It was accompanied by multiple flashes of dizziness and then my head felt really heavy. When I tried to turn my head, it wouldn't budge and felt as if only my brain was turning. These symptoms went on for a good 30-45 minutes and I felt immobilized. Once the symptoms passed, I felt really tired and out of it and it took a good 45 to 60 minutes to recover. Wednesday came and I had my typical dizziness bouts, but nothing out of the ordinary. However, on Thursday, I had the same kind of episode I experienced on Tuesday. It was almost deja vu. I was sitting at the same exact place and it occurred at almost the same exact time while I was reading. Again, had sudden intensified ringing in my right ear accompanied by multiple flashes of dizziness and the heavy head feeling. This time though, the symptoms weren't as strong as Tuesday's and the episode only lasted about 30 minutes and recovery time was about 20 to 30 minutes. I still felt out of it, but not as much as Tuesday. So lastly, on Friday, same thing happened like it did on Tuesday and Thursday. This time, the intensity was more comparable to Tuesday's episode. Also, I had a couple of additional symptoms. My head felt more full and I had a slight headache for a few minutes. I also felt as if my brain was folding in on itself. Additionally, my legs felt sort of weak and mushy. This episode lasted for about 50 minutes and I felt really out of it and tired once again. It took about 45-60 minutes to recover.

As I'll explain, the one main issue right now is trying to figure out whether the cause of my bouts of dizziness and off-centeredness is a central brain issue or my tumor causing seizures, or maybe both! Anyway, Dr. Lai and Dr. Guzman thinks that although my normal symptoms are unclear as to the cause, that the three episodes mentioned above are consistent of what would be a seizure. They were concerned of just how long the episodes went for and the symptoms I had and the fact that I felt so tired afterwards. As of now, they decided that it would be best to keep me on my 3,500 mg Keppra dosage and to also add another anti-seizure drug called Vimpat. It's a newer drug and have similar side-effects to Keppra. It's suppose to be easier on the body (e.g., liver) compared to earlier anti-seizure medications. As with Keppra, I'll have to watch out for increased dizziness (the irony, I know), loss of appetite, personality changes, numbness, etc...Will give it a month and see how it goes and how my body responds to it. Hopefully it will work in controlling the breakthroughs and I won't get a rash like I did with Dilantin. So basically, Dr. Lai wants to stop all breakthroughs (i.e., seizure activity) and hopefully I can ramp down on the Keppra dosage. Again, it's a wait and see approach.

The other item I discussed with Dr. Lai was what to expect if thing take a turn for the worse. It may sound like ignorance on my part, but I wanted to know exactly how someone passes from brain cancer. Long story short, generally as the cancer spreads, it can create a mass effect and push on healthy brain tissue and therefore cause cranial pressure. Though, the process can be different for each person because all brain tumors are unique, what is normally constant is that brain cancer eventually causes a person to go into a coma as it shuts down critical brain functions. If the tumor or swelling results in pressure of the brain stem, then it will cause a person to not be able to swallow. At this point, a person would eventually need to go on life support in order to live as they would not be able to function on their own...

So much to discuss...it's been awhile and much has happened since my last full entry...

On April 3, I had the follow-up with Dr. Wilkinson to get the results and his opinion on the VNG testing. Based on the testing, he felt that my dizziness and whatnot was not due to something being wrong with my vestibular system. He stated that it might therefore be a central brain issue. Basically, there are multiple systems working in unison that goes into creating a person's sense of balance and equilibrium.  The three sensory systems include the vestibular (inner ear), ocular (eyes), and somatosensory (feet, ankles, knees). And of course all these three systems work with the brain which is the overseer and controller of our motor functions. So when it's a central brain issue, the basic idea is that the brain is having trouble processing all the information it is receiving from these sensory systems and therefore causes our motor control to be a bit off.

Dr. Wilkinson referred me to England Physical Therapy to have a dynamic posturagraphy test conducted. This test evaluates and assesses how well each of the sensory systems are working and also how well the brain is processing the information. The machine itself is a three-sided booth with a platform in the middle. Each of the walls and platform can move. On my first visit with the PT, PT wanted to look at two things. The PT wanted to see if my balance and dizziness issues are due to a central brain issue or to benign paroxysmal positional vertigo (BPPV). Each of us has small calcium deposits (ear rocks) in our inner ears. BPPV occurs when a small piece breaks free and starts to float around in the inner ear which can send mixed messages to the brain and cause all sorts of problems. It can be caused by head trauma, infection, or brain surgery. The PT first tested for the BPPV by performing something called the Epley maneuver, which is a series of head movements that is suppose to guide the floating debris back into place. the success rate is pretty high based on research I've done. So the first session, this was done and was told to observe whether my symptoms would get better the next couple of days.

Unfortunately it didn't and I stated this to the PT. The PT then had the dynamic posturagraphy test done. The test really threw me off especially when the front wall was only moving subtly. Long story short, the testing indicated that my three sensory systems appears to be working normally. Therefore, it seems that the main culprit is my brain having trouble processing the information it is receiving. The PT said that the most likely causes could be from the surgeries I've had or the radiation therapy or both. So for the past few weeks, I've been going to the PT twice a week and have been given exercises to help compensate for any brain deficiencies I may have. At this point, the PT wants to get to a baseline where we can get a better idea of the cause of my issues. So, after a period where my symptoms should have theoretically improved and I'm still having problems, then maybe we can rule out the brain processing issue and say that the root of my problems is the brain tumor. Or, maybe if there is an improvement with certain functions, but I still have certain kinds of symptoms, then maybe we'll have a more definitive answer or feel more confident in determining that they are caused by the tumor and are seizures, etc...

Overall, at this point, Dr. Lai and Dr. Guzman confirmed my gut feeling that what I have been experiencing may be both seizures and a central brain processing issue caused by the surgeries and radiation treatment. As I mentioned, it is a wait and see and trial and error approach. Down the line, if there still isn't anything concrete that can be drawn, Dr. Lai and Dr. Guzman recommend that I get a video eeg monitoring test done. This test would require me to be admitted for 1-3 days in order to be under constant observation. It would allow my brain activity to be studied and recorded while I have one of my "episodes" which would better enable the docs to determine the root cause.

Whew...long post.

My routine 3-month MRI scan coming up this Friday and then meeting with Dr. Lai on Monday. Have never had to wait this long between the scan and meeting with the doc.

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.

More thoughts on my existentialism struggle. I came across Maslow's Hierarchy of Needs pyramid. I haven't seen this since my Psych 100 class I took years ago. Anyway, I think I have always in a way operated under an upside form of it. However, now, I feel especially as though I am.

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. 

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.

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...