Hi, I'm still here. Will starting giving some updates soon again. Next MRI will be in January. My next meeting with Dr. Chung will be in February which will include a standard EEG test to see how things are. At my last visit with Dr. Chung, he stated that if things go well, that I may no longer need to take Keppra by the end of 2013. Most likely I will go on a taper schedule starting sometime in May if I am incident free (i.e., no seizures). As of right now, I am completely off of the Vimpat.

I also have an appointment scheduled with Dr. Wertheimer in February as well. This will be a long one as Dr. Wertheimer will be conducting a more comprehensive psyche evaluation test in addition to coming up with a cognitive rehabilitation plan.

Overall have been okay. The 3-4 weeks prior to Thanksgiving were great. I was basically symptom free and almost felt back to normal. However, since Thanksgiving, it's been up and down and some symptoms that haven't surfaced in months came back such as flashes of dizziness and wooziness. Although things are still a bit up and down, I have noticed a bit of improvement and hope it remains so.

10/23/2012 MRI Scan Update

I had my regularly scheduled MRI scan yesterday which showed the tumor as stable. Dr. Hu still wants me to stick to the 3-month MRI cycle for the moment so my next MRI will be in January. However, he did mention that if the tumor is stable at that time, then I may go to the 6-month MRI cycle. It’s a double edge sword. On one side, it’s a good sign as it means that the tumor is stable. On the other side, I can see it causing anxiety having to wait so long between scans. For the moment though, the tumor is good so I am relieved.

C-EEG Experience

Got home from Cedars-Sinai on Friday. The plan was to originally stay from September 10 to September 12, but stayed until Friday due to a few reasons. Overall, based on the C-EEG, Dr. Chung does not believe the events or episodes I had during the week are epileptic seizures which is a good thing. However, there is still a long road ahead.

On Monday, I checked and was taken up to my room in the North Tower. Once I got to my room, I was taken to a another room where the EEG tech placed the electrodes on my head. Each of the electrodes had wires that attaches on to a central unit which records and transmits the information/data received to a computer which processes the information. The insertion process didn’t take too long, like about 20 minutes. The glue used was somewhat bothersome mainly due to my now more sensitive olfactory.

Once all the electrodes were glued in place, the EEG Tech wrapped my head to hold them in place and to also make it more comfortable for me as well to sleep and lie down. The electrodes, while a bit uncomfortable were surprisingly comfortable. The only somewhat uncomfortable thing was the central unit I had to carry around. The length of the EEG cords to the central unit was only about two feet long. Luckily, the central unit had a loop I could sling onto my shoulder.

 Window view from my bed

Before I went back to my room, Dr. Shaw, a neurologists who works with Dr. Chung stopped by and explained the process. She said that whenever any symptom to press a the button at the end of a small cord extending from the central unit. Although my brain activity will be monitored the entire time, pressing the button will help them in focusing on certain portions of the data collected. Additionally, since my room has both audio and video monitoring, I should also state the symptoms I felt.

My view the majority of the time

So once things were set, I went back to my room and was confined to bed. I was considered a fall-risk patient and therefore I was placed in a “restrained” bed. A restrained bed is when the rails on each side of the bed is raised. Normally, only one rail on either side is raised. Also, since I was a “fall-risk” patient, a nurse or clinical partner always had to be with me whenever I wanted to get out of bed. So yes, even when I wanted to use the restroom. Most of the time, the bed detector alarm was set to go off to give notice to staff in the case someone got out of bed.

Yes, there was a lot of down time.

After settling in, my nurse went through a series of questions such as the types of symptoms I’ve felt, what I’m feeling now, etc…At the end of the questions, I made a remark that at least I won’t be poked this time around. The nurse said sorry and proceeded to stick an IV in me in the case that medication needed to be quickly given to me. It didn’t hurt at all really, but when the IV was stuck into my right forearm, blood gushed out everywhere and some got onto my sheets. I’d never been that much of a bleeder! Well, my sheets were quickly changed.

So I had a TV with basic cable and a Cedars-Sinai exclusive movie channel. And no, none of the movies had Lindsey Lohan in them. I could also use my laptop and any electronic devices. There had been some concern that while I could use my devices, I couldn’t have them charged near me as they might interfere with the EEG readings. However, the nurse cleared the matter up with Dr. Chung and having a charging device near me would not be a problem. Anyway, it turned out that I hardly used my laptop or phone and just read most of the time.

So, the important things. During my stay, I did experience some symptoms. My latest symptom of the week was a faint-like wooziness feeling. During my entire stay, the normal symptoms of the restlessness in my limbs, the heightened ringing in my right ear, and the racing of my heart did not appear. It’s a good thing they haven’t appeared in a while now (past couple of weeks), but I wished they would have just so I can put them to bed whether they are epileptic seizures, or just something else.

Day Five, electrodes without cap

Anyway, Dr. Chung came by every morning for brief chat and indicated that based on the data collected, that my symptoms were not epileptic seizures as my brain activity showed nothing out of the ordinary during my spells. This was good news to me, but also there’s some trepidation there as well. If they aren’t epileptic seizures, then what are they then? Also, just because these spells were not epileptic seizures, it doesn’t completely rule out that my prior spells were not. At this point, the next step is to taper me off my medication and see if that improves things. Since Vimpat has more pronounced side effects than Keppra, such as causing dullness, I will taper off of it first. Once I do, then I’ll taker off of Keppra. So if there aren’t any problems, I may be completely off both meds soon. I’ll be meeting with Dr. Chung again on Sept. 24 and will be receiving my schedule then. At that time, we’ll also go over the C-EEG data in a more detailed fashion.

During my stay, I also met a Dr. Jeffrey Wertheimer, a neuropsychologist at Cedars. As the name suggests, it us used to diagnose any neurological and psychological disorder(s) a person may have. Well, based on the evaluation, the physical manifestations I have aren’t purely psychological. The bad news is that there is an organic medical reason why they occur (e.g., surgery, radiation, medications). So at this point, Dr. Wertheimer agrees that tapering off the meds may help tremendously in alleviating some issues I am having.

National Brain Tumor Society Brain Tumor Walk

I will be participating in the NBTS 5K walk this Saturday at Angels Stadium. The team is aptly named "Team Braingels." The decision to name my team this was actually kind of a difficult decision as I'm a lifelong Dodgers fan. However, I did promise a friend that I would name the team that. The friend unfortunately won't be able to participate this time around, but will be there in spirit.

I posted this event and the fact that I will be participating on my social media sites to raise donations and awareness about the event. There is a bit of anxiety there, the reason being is because not all of my friends and acquaintances know that I have a brain tumor. My posting about the event and my involvement is ambiguous about whether I have a brain tumor, but one can easily add two and two together. Now I have a bit of anxiety about what may come and how to deal with the questions if they do come. 

However, I am looking forward to the event. I had wanted to participate last year, but was in no condition too as I was still recovering from the craniotomy. My family will be participating with me and I also look forward to that.

More Reflections

Around this time last year, I was still adjusting to life post-craniotomy. The couple weeks right after the surgery, I was still somewhat sedated from my pain meds and spent my time just trying to be as pain free as possible. When I finally got off the pain meds and was more lucid, i didn't think things would have been as different as they were.

I remember Mom and Dad took me out to the local mall to get some exercise and the experience was surreal to say the least. Suffice to say, I was wide-eyed staring at this post-craniotomy world. I kept thinking to myself, I just had my head cracked open and a part of my brain removed, and now I'm here in a mall watching people shop. I could not process anything I saw and could not grasp the reality in front of me. Looking at the people walking by and the shops they went into, I didn't know what any of it meant. Even today, I feel like Mal in Inception or Thomas Anderson in The Matrix. Like something doesn't feel right and it's gnawing at me, a little pebble in the shoe, and I can't ignore it.

Living with a Brain Tumor

@TheLizArmy created this which illustrates the title well

Continuous EEG Video Telemetry Scheduled

The Cedars Sinai neurophysiology department called today and I now have a schedule for the continuous EEG video telemetry. It is scheduled for September 10th through the 12th. The stay may be shorter or longer depending on how things go, but the maximum number of days will most likely be five days if necessary.

I am a bit anxious. The EEG should provide a clearer picture of the cause(s) of my ongoing issues with these episodes I've been having. However, I am afraid of the "what if." The what if it doesn't and the unknown path that will come along with this.

Traveling down this long road of uncertainty, anything that provides a perception of certainty is certainly a sight for sore eyes. First it was the needle biopsy which would provide a diagnosis, then it would the craniotomy which would provide a more concrete diagnosis and also resection of the tumor, next came the radiation therapy which was part of the treatment protocol to manage the tumor, and now it's the EEG to assess that my episodes WILL be considered seizures and the established steps will be taken to treat these "seizures."

UC Health System and Blue Shield Come to Insurance Resolution

The UCLA Health Center and Blue Shield finally came to a resolution regarding the insurance flap between the two parties. Just a recap, the last contract between the two parties ended December 31, 2011 and all UC health facilities have been out of Blue Shield's network since then. Suffice to say, this has caused of a lot of stress for me along with, I'm sure, many other patients receiving care at UCLA and other UC health facilities. I am grateful for Blue Shield's Continuity of Care Services waiver program, but it has not been without it's share of problems and heartache. Starting September 1, 2012, the UCLA Health Center and it's affiliates will once again be within Blue Shield's network. The new contract will be effective through June 30, 2015.

At this point, I will remain at Cedars Sinai for now. One reason that has lessened any confusion on my part of whether to go back to UCLA is the good rapport between Dr. Lai and both Drs. Hu and Chung at Cedars. So far, the sharing of information between Cedars and UCLA has been seemless. Dr. Hu and Dr. Chung both know Dr. Lai well and have seem open in including Dr. Lai if need be. I contacted Dr. Lai about the news and he just wants what's best for me.

If for some reason, I do need another biopsy, this will be a tougher dilemma. I have read and heard that Dr. Wu at Cedars is a very well respected neurosurgeon who is also responsive to his patients. However, Dr. Liau at UCLA has set such a high standard that it would be difficult not to go back to her. Additionally, the Ronald Reagan UCLA Medical Center nursing staff also set a  very high standard.

Overall though, I do feel very grateful that I now have choices again and UCLA is again on the table along with UCI and the other UC health facilities.

Meeting with Epileptologst

I met with Dr. Jeffrey Chung at Cedars Sinai this past Monday and his recommendation is to go forward with the continuous EGG video telemetry (V-EEG). This kind of testing requires a person to be admitted into a hospital and be continuously monitored and recorded with a video camera. The advantage of a V-EEG over a regular EEG is that the continuous monitoring can greatly increase the likelihood of "catching" an episode. The video will supplement the EEG readings.

Dr. Chung stated that this is best diagnostic tool to determine whether my episodes are seizures. If my episodes are seizures, the V-EEG can pinpoint and reveal the location and root of the problem. There are certain approaches that can be taken if I do have seizures. One approach is a change in medication that may be better suited in preventing or mitigating the root of my seizures. Apparently there are 20+ anti-seizure meds out there! Another could include surgery, but Dr. Chung said it's too early to start worrying about this therapy and that it is normally reserved for people who have acute gran mal or clonic tonic seizures.
Dr. Chung also stated that my symptoms appear to be somewhat consistent with simple partial seizures (aka, focal seizures). Simple partial seizures do not cause a person to lose consciousness of which I have never had happen to me thankfully. My symptoms that are consistent with this type of seizure include numbness/mushy-like feeling in my limbs, actual weakness of the limbs, rapid heart rate, heightened ringing in my ear, sometimes nausea, and sometimes slight twitching of my limbs.

As I've mentioned and what has been stated to me before by Dr. Lai and reconfirmed by Dr. Chung, is that my episodes may be a combination of seizures, side-effects of the meds, and just result of brain damage from my surgeries and radiation therapy. Simple partial seizures normally lasts no longer than a few minutes, but my episodes normally can last from 30 to 60 minutes. I asked Dr. Chung what if the V-EEG indicates that my episodes aren't seizures and he stated that he didn't want to make too many specific guesses of the next steps until after the V-EEG. He stated that there are just too many possible causes and he didn't want me to worry too much for the moment and that we should take it one step at a time. He was willing to delve into the possibilities, but I agreed about the taking things one step at a time for now. He did add that if my episodes aren't seizures, then I may no longer need to take Keppra and Vimpat. His general approach is, "Why take meds if they don't work?" I completely agree with this.

Of course after my meeting with Dr. Chung, I did some additional research, and apparently V-EEGs are also an effective tool in diagnosing something called non-epileptic pseudo-seizures. As the name suggests, these episodes may seem seizure-like, but are in fact not seizures. The video monitoring is the key here because while a person may be physically displaying a seizure (e.g., stiffened muscles, jerking, etc...), the EEG readings are normal. These types of episodes are also known as psychogenic non-epileptic events and the root of the problem is psychological more than anything physical. Great, just something else to worry about!

Lastly, Dr. Chung recommended that I see a neuropsychologist to have my neurocognitive functions assessed. Neurocognitive functions include memory, mood, higher brain processes, etc...Ideally, I should have had one done back in February last year before my first biopsy to set a baseline, but hindsight is 20/20. Anyway, having a neuropsych evaluation will help in moving forward as it will reveal my neurocognitive strengths and weaknesses and help in the preparation of future possible treatments. It can also help in creating strategies to improve or help my brain to compensate for any deficiencies it might have.

Anyway, for now, his office will try to set up the V-EEG in the next few weeks or so. The testing will require admission to Cedars. Since the EEG will only be effective if it catches one of my episodes, steps will be taken, if necessary, to induce one. The typical protocol to induce an episode includes tapering of my anti-seizure meds and sleep deprivation for a couple of nights. As the video camera will be fixed on my bed, I will for the most part be restricted to my bed. I can use my laptop, but will not be able to charge it near me as it can interfere with the EEG reading. Overall, I will be monitored for 3 to 5 days depending on how it goes. Some have only needed a day, it just all depends. Since my next MRI will be coming up in a couple of weeks, Dr. Chung's office will be contacting Dr. Hu's office to ensure that the MRI includes a few items needed for his purpose. Also, Dr. Chung will contact me regarding setting an appointment to meet with a neuropsychologist.

1-Year Anniversary of Craniotomy

It was a year ago today I had my craniotomy. The year seems like it's passed by so quickly, but also seems like an eternity ago as well. Here's my schedule for the day:

Surgery Date: August 4, 2011
Check-in Time: 4:45 AM
Surgery Start Time: 7:30 AM
Surgery End Time: 5-7 hours
Expected Discharge Date: August 7, 2011

The last thing I recall before the surgery was being asked by one of the nurses whether I wanted my entire head shaved or not. I remember answering yes, and having both the nurse and my sister laughing stating that it was the correct choice. My next recollection was wondering when the operation was going to start while reaching to scratch an itch on my head. To my great surprise, instead of feeling my hair, I felt the turban wrap instead and thought "???" until I though, "Ohhhhh..."

One of my ICU nurses

For the few hours after waking up from the surgery, I felt like a million bucks.  I couldn't stop talking and my family and nurses kept having to remind me to take it easy and get some rest. I was full of energy and ready to take on the world, that is until the meds wore off. Things are so hazy...like a dream. Two things I do distinctly remember were the non-stop hiccups I had and the catheter.

Brief Summary

A brief summary of what's been going on.

June (throughout) - Increased "episodic" activity

June 25 - Met with Dr. Lai for the last time to review my MRI scan which revealed everything stable though there were somethings that were disconcerting, probably due to my own concerns because of increased activity. From various cuts and angles, the tumor seemed slightly bigger. However, comparisons for April MRI to June MRI did not exactly match. Here is scan sent to me by Dr. Lai a couple days after our meeting. So thankful to have Dr. Lai as my doctor. This assuaged things somewhat.

So this was my last meeting as UCLA and Blue Shield have not yet come to terms on a new contract. We spoke about my options and I decided to go to Cedars Sinai. Dr. Lai agreed it's probably the best place to go. He knows several doctors over there and have good rapport with them so the exchange of information will be easier. The doctors Dr. Lai recommended were Dr. Hu (neuro-onco) and Dr. Chung (epileptologist).

July 10 - Met with Dr. Jethro Hu at Cedars for the first time. Dr. Hu will be my neuro-oncologist moving forward from here. Based upon his review of my scans, he also believed my tumor is stable. It's a relief to know that his opinion is consistent with Dr. Lai's. My next appointment with him is scheduled for August 21 of which I will also have my next MRI scan. Dr. Hu also increased the Vimpat dosage from 300mg up to 400mg to see if it might help with containing these episodes. So far it seems to have as my episodes have come down a bit. Haven't had one the past few days.

I'll be meeting with Dr. Chung on August 6 to discuss about my ongoing episodes and to see if a continuous video EEG will be needed. A C-EEG is where a person is hooked up and monitored for a 24-hour or longer period of time. This type of EEG may better determine if a person's episodes are seizures or not. The longer monitoring duration in itself increases the chances of "catching" a person's episodes. This, therefore, permits monitoring of a person's brain activity during their episode to determine if the activity is a seizure or something else.

Random Thought About Euthanasia and State Mandated Health Insurance

With so much hoopla about Obamacare the past couple of years and what not, I wonder why people don't speak more about allowing a person the right to die if he or she elects to do so. It's the other side of the coin that no one seems to talk about, especially those who are against Obamacare and state mandated health insurance in general.

The elephant in the room (at least to me anyway) is, if the state won't allow a person the right to die, then the state should provide meaningful health insurance for that person. However, if the state doesn't want to provide meaningful health insurance for said person, shouldn't the state allow the person to die if he or she wishes to? If a person's right to die is taken away by the state, the person should be afforded health care to ease the person's burden, be it mental or physical, or both! If the state is not willing to provide said health insurance, then the state should allow the person to die.

As of right now, a person who may be suffering from whatever ailment can't elect to be euthanized, but also does not have state mandated access to health insurance either. In a way, this is a Catch 22 and a form of torture in my eyes. So a person might argue that everyone has the right to get health insurance on their own, that there is no law out there preventing a person from buying health insurance. My rebuttal is that, for many of these people who would consider euthansia, they are most likely already at that point where their health condition does not allow for them to earn any sort of meaningful income that would allow them to receive the care they need via with or without insurance. Also, the people who fall into this category would likely fall into the dreaded "pre-existing" category. Any person, once placed into this "pre-existing" category, can pretty much forget about finding affordable insurance. What's the point of just living if all a person is living for is to pay off medical bills? Living hell...

Anyway, the courts under the 14th Amendment have allowed passive euthanasia (i.e., refusing treatment, such as pulling a respiration, etc...), but have yet to definitively tackle on active euthanasia in a direct and meaningful way. Courts have this uncanny ability to make a ruling on an issue while skirting around the real issue. Anyway, courts have by default ruled in favor of states. The states' position have always been that it is in their best interest to not allow their citizens to actively take their own lives. And this goes back to my original point. If a state is not willing to pay or provide people meaningful health insurance to make them better, then the state should also not force the person to live either. It's a simple concept...So simple that it's hardly ever spoken about.

Sorry everyone, but this will be somewhat of a morbid post. Last week I attended my eldest Nephew's high school graduation. There's a lot of meaning there as we have a long history. I have never thought of him as a nephew, but always as a son or my little brother. I am so very proud of him...

So this is where it gets kind of morbid and sad. As one of the students was giving a speech and I was looking at all the bright young and hopeful faces of the graduates, a sadness befell over me. I kept thinking to myself, "Oh my god, one of these kids, these kids, so hopeful and in a way so naive and looking towards to the future is going to have his or her life shattered by cancer..."

Was it wrong of me to have this thought? No one deserves this, I kept thinking, no one deserves what I am going through, no one deserves what any person afflicted with cancer, no matter if brain, or liver, or pancreatic, has to go through...I just remember feeling very sad that one of these kids and many kids graduating this year all across America will one day learn that they have cancer.

Everything has been tasting like milk to me the past week. It doesn't matter what it is. It ranges from solid foods, to fruit smoothies, to water. The last one is the worst as it tastes really thick especially when at room temperature. Thankfully a warm cup of water is "okay" and having some ice cubes makes it a bit better as well.

Also been having this weird pain starting from the leftside of the base of my skull that shoots down the neck then over to my left shoulder. At first I thought maybe I just slept wrong and just strained a neck muscle, but it definitely doesn't feel like it. It's just this dull pain that's always there no matter whether I move or not.

I wonder if these two things are related to the Vimpat I am taking. In the classic case of the internet being a person's best friend and their worst enemy, in doing a search, I came upon Fibromyalgia and a list of its symptoms. I don't know, there were definitely a lot of them that I checked off. I read that men only account  for 10 to 20 percent of all reported cases. With my luck lately, I may fall into that, or more likely, this will be another item I can toss into the "uncertain" bin. Anyway, I may bring it up to my doc.

Not really related to my tumor, well, not directly, but was thinking about the brother that I never knew and got really emotional today. The brother I am speaking of was my parents' first born, but passed away before his first birthday back in the old country. He was sick the day he was born and my parents never gave him a name. So I've been thinking about him a lot lately and wondering how things would be if he lived. If he had lived, I most likely would not be here. I would trade my life for his in an instant if I could and I wish I could. I have a feeling that my family would be better off if he was living today. My mom has said that he looked like my father which is a good thing. My dad in his younger years was a rather fashionable and handsome guy (just think a cross between James Dean and a young Elvis), which to the dismay of my mom, did not pass on to myself and my living brother (lol). I have always wondered what he would have been like. Would he have been kind, be the type of son my parents would be proud of? Would he have found a great wife and have wonderful kids and be the bearer of the family legacy??? Would he have been a great brother to my sister and my brother, someone that they would look up to?

It's odd, my mom always tells us of her run in with a lady back in the old country before the passing of my eldest brother. The lady was a fortune teller of sort. Having never met my mom, she mentioned to my mom that she was sorry about my brother's condiion and that he was not meant to be born to my mom and that is why he was sick. She stated that he will pass, but not to worry because he was not meant to be with my parents in the first place. She went on to say that my mom and dad were suppose to have a daughter first, that she will be as healthy as a child can be, and that my folks will only have three children. Lastly, she also mentioned that in the not too distant future that my mom will travel to a very far off place, a place that my mom never thought about. Well, it turns out that the next child my parents had turned out to be my sister who was healthy as a mule, then when the old country fell to the North Vietnamese forces, my parents ended up here in the US. They then had me, their third child. Their second child is my living brother.


Anyway, I think my eldest brother would have made my parents really proud. He would be 40 years old going on to 41 later in the year. If he had survived, then I probably wouldn't be around and wouldn't worry my folks due to my brain tumor. Having this brain tumor now, I sometimes think, what was the point of taking away my eldest brother just to have me come down with this tumor. I understand that life is just what it is, but it can be unfair at times...*sigh* As I stated, I have always wished my brother had lived and none more so than now.

Tumor May Have Been Present in Late '06

I've always wondered how long the tumor might have been around. It's the one of many questions I suppose that can't be definitively answered. Based on the relative slow growth of the tumor, it may have been around for quite some time now. Since this may be the case, I've found myself pouring over all the little incidences that's occurred over the past several years, well, all the ones I can remember anyway.

So after some long and hard search into my memory bank, it seems that I may have had the tumor as far back as late 2006, early 2007. At that time, I was still living in Cleveland. It was my last year of grad/law school. I'll be honest, that last year, particularly the last semester was pretty tough as I was, let's just say, ready to graduate from school! Anyway, if I recall correctly, towards the end of 2006, early 2007, there were some strange activity that I was having, that looking back to it, may have been telltale signs of a brain tumor. First, there were more than several instances of waking up in the middle of the night and vomiting without any warning. I didn't feel nauseated or anything. At that time, I thought maybe I was just having severe panic attacks although I didn't feel too stressed, not anymore stressed than at any other time during grad/law school. In fact, that last semester was probably the "easiest" semester I had and I was enjoying myself. By that time, I was mostly taking grad classes and was really enjoying my Grad Assistant position. However, who knows, it may have latent panic attacks.

Besides the vomiting, there were also a few instances where I heard voices, almost like a radio program was playing, but I could never pinpoint the source. I even went outside a couple of times in the dead of night in the Cleveland winter, but could never find the source of what I was hearing. The reason it was hard to pinpoint the source was because it seemed like it came from everywhere, but from nowhere as well. It was the strangest thing and only occurred at night. Like the vomiting, I only woke up to these voices in the middle of the night. Also, the voices were always unintelligible.

I must say though that I don't remember any other symptoms associated with these two activities and I don't think both of these things ever happened at the same time. They could have, and I could have had other symptoms accompany them, but I don't remember. Both these things only happened for a few months and then just stopped. They were so strange and up until then, I had never had anything like them. Also, for some reason, I never bothered to do an online search of my symptoms! Maybe if I had had better insurance than just the university health coverage, I could've gone to the Cleveland Clinic to get checked out (yes, I see the irony of it all). My school's health center wasn't the most comprehensive. Of the times I went there, it was mostly always the same type of response, which was, "Just tough it out..."

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...

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.

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

Therapy Done

Had my last session on Wednesday. I received these two items as parting gifts. My radiation therapists (Ben, Jess, Ruben, James, and John) were all great and in a way I will miss seeing them on a weekly basis. I joked around with them that this was my 2nd degree from UCLA (my first being a bachelor's in anthropology), but that hopefully I won't earn anymore anytime soon, if ever again.

Last Week of Therapy!

I have only two sessions left set for tomorrow and Wednesday and then my therapy will be over. It has gone by so fast. Am very thankful that the short-term effects have been relatively mild compared to what could have been. Hoping that it will be the same case with the delayed long-term effects.

After my last appointment, my first follow-up appointment with Dr. Selch is scheduled for July 17, about six months from now. It will also include an MRI. This is supposedly a good sign because if it wasn’t, my follow-up appointment would have been scheduled for April, i.e., the 3-month cycle. Normally after treatment, it takes a bit of time to measure how effective the treatment was. If I am lucky, the MRI will show some shrinkage of the tumor. However, I do have an appointment with Dr. Lai at the end of this month along with the 3-month MRI cycle that he has me on.

Being hopeful that the insurance issue between Blue Shield of California and the UC health system will be worked out soon. My continuity of care services applications, which would allow me to continue to receive care up at UCLA from both Dr. Selch and Dr. Lai are currently under review by Blue Shield and I should get a determination sometime this week. All indications show that both applications should be approved, but in the event that they are not, then I will need to go find another neuro-oncologist if Blue Shield and the UC health system do not come to a new agreement soon. So hoping for the best.

Lastly, I am set to return to work on February 6. I will be starting out about 30 hours a week (M-F) to see how it goes. It’s hard to believe that it will have been six months when I return. Seems that a lot has changed since I left (e.g., moved to new office building, new staff have been hired, reorganization of the company after merger) maybe not, maybe the change is just me, or rather my perception, who knows…but this will be another step towards my new normal…

I have 6 sessions of radiation therapy left. This week will be my last full week plus two more days next week. I only had one session scheduled for next week originally, but had to reschedule a session from last week because radiation oncology had some issues with their network.
Overall, things are relatively good I suppose. Been having some issues here and there, but nothing out of the ordinary according to Dr. Selch. About two weeks ago, I started to have some weakness in my left leg. It’s very subtle though noticeable. The typical pattern when it occurs is normally when I get up after having sat for at least 10 to 15 minutes. The weakness is normally noticeable only the first few steps and then disappears. It hasn’t caused me to fall over or lose my balance, which is definitely on the plus side.
The fatigue over the past couple weeks has gotten a tad worse as I’ve found myself sleeping longer and longer. The strange thing is that I've also been having trouble sleeping as well the past week which hasn't helped either. For the past several days, I've found myself sleeping 12 to 13 hours which is rather atypical for me. I think it’s from the radiation treatment as it is in a way re-injuring my brain and therefore causing some swelling. I feel a bit the same way as I did when I was dealing with cranial pressure buildup after the surgery, though that was much much more severe.
Not surprisingly, the frequency of dull headaches has also increased a tad as well. The good news however, is that it’s been manageable with Tylenol when needed and the discomfort associated with the headaches ha remained steady. The sore spots in my head have improved a bit over the last couple of weeks.