What I remember most was the total lack of surprise. I sat on a bench outside the MRI building of Cardinal Santos Hospital in San Juan and read the words for the first time:
"irregularly-shaped...mass involving the left cerebellopontine angle region...
"...measures approximately 3.9 x 4.1 x 3.8 cm...
"...consistent with a vestibulocochlear schwannoma..."
I felt no shock, no surprise, no sinking feeling. In essence it was only a confirmation of what I had suspected all along. For the past two years the symptoms had started creeping in -
1) I gradually lost hearing in my left ear, especially the ability to recognize speech. In 2007 I thought something was wrong with my office phone, only to one day hold the phone to my right ear and realize that the phone was perfectly fine and the problem was with my left ear. By 2009 this situation had deteriorated to the point where I simply could not use the phone with my left ear. It was impossible to recognize the words being spoken, there would only be this low, barely audible mumble.
2) My sense of balance was deteriorating, I found myself "tipping over" if I put too much weight on one leg. Walking on uneven surfaces, like asphalt, proved difficult. I had episodes of light-headedness. Quick snaps of the head, like when you glance back to check traffic before shifting lanes, would leave me disoriented for a split second.
In the last six months, more little signs had started to show -
3) Whenever I exerted my neck muscles, like when I bend down to tie my shoes, afterwards I could feel a throbbing at the back of my head, as if the increased flow of blood did not have adequate space to flow, and...
4) laying my head on any moderately hard surface, like a headboard, a leather armchair, or even a hard pillow would produce a mild, dull headache on the backside of my head that seemed to last for days.
So when my newly-found neurologist, Dr. Rogelio Libarnes, suggested that all these indicate the possibility of some kind of mass or tumor growing inside my head near my ear, that initial diagnosis made a lot of sense to me. When I went on to have a brain MRI, deep in my heart, I felt quite certain they would find something. Hence, the lack of surprise when I received the actual results.
Dr. Libarnes was actually my fifth consult. Over the two years since the symptoms appeared I had visited three ENT specialists and one neurologist, and they had all missed the correct diagnosis. In fairness to these doctors I guess it is not incorrect to rule out all the less serious possibilities before considering the more serious ones; and I was also not a very patient patient - which is to say that I admit to being an impatient patient. If there was no "eureka!" moment on the first visit then I tended to lose interest very quickly. So I would not go back for second and third visits and maybe I did not give these doctors enough opportunities to figure things out.
That said, I still found Dr. Libarnes to be particularly impressive. He immediately zeroed in on a minor symptom which the other doctors seemed to have dismissed. When I told him that whenever I turned my head suddenly, I felt that it took a split second before my vision properly "jiggled" into place, he found this to be relevant and spent a good 10-15 minutes shaking my head and watching how my eyeballs reacted. He felt that my eyeballs were moving with my head and not moving independently of my head, as they were supposed to. I felt he also focused on the entire set of symptoms instead of thinking of each separately.
So now I had my diagnosis, which many times is already a third of the battle. But now the real challenge begins..
Vestibulocochlear Schwannoma / Acoustic Neuroma
The more "scientific" name of the tumor I have is a "Vestibulocochlear Schwannoma". It is a tumor of healthy schwann cells that grow out of eighth cranial nerve. That particular nerve has a vestibular division, which sends information regarding balance, and a cochlear division, which sends information about hearing. Hence, vestibulocochlear schwannoma.
More commonly, it is called an acoustic neuroma or AN. A neuroma is a tumor made up of nerve tissue, so an acoustic neuroma is such a tumor growing out of the acoustic nerve. The words become less grave sounding when we break it down this way. :-)
As to why there is an over production of these otherwise healthy nerve cells, no one really knows. All the doctors I spoke to said that the cause boils down to a genetic disorder, which is not necessarily the same as saying that it is hereditary; just that one drew a not-so-good number in the genetic sweepstakes of life.
There are theories pointing to either loud noises or cellphone use as being causes, but for the most part these theories are unproven and generally unaccepted by the medical establishment. They are, however, particularly seductive to personality types who always seek to assign blame - "if someone comes down with something, he must have done something to deserve it." :-)
For me proof can be found in the empirical numbers. If cellphones are the culprit for instance, then the explosion of cellphone use in our world today must be accompanied by an explosion of these tumors (similar to the explosion of colon/rectal cancer cases that came a few years after the introduction of instant noodles in styrofoam bowls). But all the doctors I spoke to said there was no significant rise in the frequency of cases they saw in the last few years.
The good news is acoustic neuromas are benign or non-cancerous. That in itself is already excellent news. Another piece of very good news is that ANs are located near the ear and far away from the brain centers that control intelligence, emotions, and memory. Nevertheless, they do pose quite serious medical risks and problems. As these tumors grow (they are generally very slow growing, but growing just the same), they begin to press on the cranial nerves and the brain stem, thereby affecting the body's ability to communicate with the brain. If left unattended, one would end up, as Dr. Libarnes put it, "like Christopher Reeves". (I quickly pointed out that perhaps he meant "like Christopher Reeves before he died." But I guess he was correct either way, since being like Christopher Reeves before he died points one towards the same eventuality.)
Mine is already quite large, about 4 cm in diameter. By some estimates it might have begun more than ten years ago. Five years was the smallest estimate I got. By this time it had presumably already ravaged my auditory nerve (hence my hearing loss) and was visibly pressing against my brain stem, pushing it to one side. My search for treatment would have to begin quickly...
More commonly, it is called an acoustic neuroma or AN. A neuroma is a tumor made up of nerve tissue, so an acoustic neuroma is such a tumor growing out of the acoustic nerve. The words become less grave sounding when we break it down this way. :-)
As to why there is an over production of these otherwise healthy nerve cells, no one really knows. All the doctors I spoke to said that the cause boils down to a genetic disorder, which is not necessarily the same as saying that it is hereditary; just that one drew a not-so-good number in the genetic sweepstakes of life.
There are theories pointing to either loud noises or cellphone use as being causes, but for the most part these theories are unproven and generally unaccepted by the medical establishment. They are, however, particularly seductive to personality types who always seek to assign blame - "if someone comes down with something, he must have done something to deserve it." :-)
For me proof can be found in the empirical numbers. If cellphones are the culprit for instance, then the explosion of cellphone use in our world today must be accompanied by an explosion of these tumors (similar to the explosion of colon/rectal cancer cases that came a few years after the introduction of instant noodles in styrofoam bowls). But all the doctors I spoke to said there was no significant rise in the frequency of cases they saw in the last few years.
The good news is acoustic neuromas are benign or non-cancerous. That in itself is already excellent news. Another piece of very good news is that ANs are located near the ear and far away from the brain centers that control intelligence, emotions, and memory. Nevertheless, they do pose quite serious medical risks and problems. As these tumors grow (they are generally very slow growing, but growing just the same), they begin to press on the cranial nerves and the brain stem, thereby affecting the body's ability to communicate with the brain. If left unattended, one would end up, as Dr. Libarnes put it, "like Christopher Reeves". (I quickly pointed out that perhaps he meant "like Christopher Reeves before he died." But I guess he was correct either way, since being like Christopher Reeves before he died points one towards the same eventuality.)
Mine is already quite large, about 4 cm in diameter. By some estimates it might have begun more than ten years ago. Five years was the smallest estimate I got. By this time it had presumably already ravaged my auditory nerve (hence my hearing loss) and was visibly pressing against my brain stem, pushing it to one side. My search for treatment would have to begin quickly...
Treatment Options
Once one begins researching treatment options for acoustic neuromas, he will quickly come to the realization, as I did, that there is still no "universally accepted standard of care" for the problem. There have been vast improvements in the medical techniques and technology used to deal with ANs in the last ten years, but a consensus on the single best method has yet to emerge, a fact which makes the search for treatment all the more difficult.
I loosely summarize the available options into four -
1) Do nothing.
2) Have surgery.
3) Undergo radiation.
4) Have a combination of surgery and radiation.
DO NOTHING
Since ANs are supposed to be very slow growing, those with small ANs have the option to do nothing and wait things out. Maybe it'll stop growing, or maybe it's growing so slowly that you'll be 95 years old by the time it starts to push on your cranial nerves/brain stem. Unfortunately, this is no longer an option for me because mine is already too big and already pushing against my cranial nerves and my brain stem.
HAVE SURGERY
This is the "cleanest" alternative in the sense that you'll be totally rid of the tumor. But completely removing the tumor also raises the possibility that with it, you remove portions of your nerves and damage the ability of your body to communicate with your brain. Your face might become paralyzed. You might be unable to swallow. You're guaranteed to lose all hearing on the affected side. I decided against this option precisely because I wanted the best odds possible of preserving all the body functions I currently have.
UNDERGO RADIATION
Under this option there are two sub-options -
Single-session radiation (like Gamma Knife) wherein the tumor is zapped with enough radiation to "kill" it in one single session. This sub-option can only be performed on tumors less than 3cm in diameter (which therefore rules this out for me), because anything larger would require a radiation dose that will prove harmful to the brain; and this is probably why the second sub-option was developed,
Multi-session radiation (like Cyber Knife or Fractionated Stereotactic Radiation technologies) which spread the radiation over the multiple sessions, from 3 sessions to as many as 30 or 50. These are relatively new technologies, very attractive in that there is absolutely no downtime. One can have it done during his lunch hour and not even take any time off work. Someday, this may well become the standard of care, but as of now the jury is still out on whether it can really be effective on large tumors. Because imagine this huge very angry bear running at you, and I tell you that you can either use a bazooka or the equivalent of one bazooka shot in as many 0.22 caliber bullets as you want, shot from a stub-nosed revolver. Which option do you think you'd have more confidence in? :-) I ruled this one out because of the uncertainty.
HAVE A COMBINATION OF SURGERY AND RADIATION
The fourth option made the most sense to me. Have a combination of options two and three so as to minimize the risks in the two extremes. With complete removal, we eliminate the problem of the tumor but at the probable expense of the cranial nerves. With radiation, the single shot is not an option for a tumor my size. The multiple-session option on the other hand, poses no risk to the nerves but the certainty of successfully "killing" the tumor is called into question. Having a combination of the two seems like an elegant solution: have surgery to make the tumor smaller such that a small bazooka can safely be used. The beauty is that to make the tumor smaller, the surgeon can carve out the "core" of the tumor and leave the shell. I compare it to an orange. They'll take out the actual orange but leave the peel. Since the peel is the part that is either actually attached to or sticking to the nerves, then there is (hopefully) no actual contact between the surgeon's knife and the nerves. After a few months, we shoot the peel with a small bazooka, thereby "killing" it so that it doesn't grow into another orange.
Sounds like a plan to me.
I loosely summarize the available options into four -
1) Do nothing.
2) Have surgery.
3) Undergo radiation.
4) Have a combination of surgery and radiation.
DO NOTHING
Since ANs are supposed to be very slow growing, those with small ANs have the option to do nothing and wait things out. Maybe it'll stop growing, or maybe it's growing so slowly that you'll be 95 years old by the time it starts to push on your cranial nerves/brain stem. Unfortunately, this is no longer an option for me because mine is already too big and already pushing against my cranial nerves and my brain stem.
HAVE SURGERY
This is the "cleanest" alternative in the sense that you'll be totally rid of the tumor. But completely removing the tumor also raises the possibility that with it, you remove portions of your nerves and damage the ability of your body to communicate with your brain. Your face might become paralyzed. You might be unable to swallow. You're guaranteed to lose all hearing on the affected side. I decided against this option precisely because I wanted the best odds possible of preserving all the body functions I currently have.
UNDERGO RADIATION
Under this option there are two sub-options -
Single-session radiation (like Gamma Knife) wherein the tumor is zapped with enough radiation to "kill" it in one single session. This sub-option can only be performed on tumors less than 3cm in diameter (which therefore rules this out for me), because anything larger would require a radiation dose that will prove harmful to the brain; and this is probably why the second sub-option was developed,
Multi-session radiation (like Cyber Knife or Fractionated Stereotactic Radiation technologies) which spread the radiation over the multiple sessions, from 3 sessions to as many as 30 or 50. These are relatively new technologies, very attractive in that there is absolutely no downtime. One can have it done during his lunch hour and not even take any time off work. Someday, this may well become the standard of care, but as of now the jury is still out on whether it can really be effective on large tumors. Because imagine this huge very angry bear running at you, and I tell you that you can either use a bazooka or the equivalent of one bazooka shot in as many 0.22 caliber bullets as you want, shot from a stub-nosed revolver. Which option do you think you'd have more confidence in? :-) I ruled this one out because of the uncertainty.
HAVE A COMBINATION OF SURGERY AND RADIATION
The fourth option made the most sense to me. Have a combination of options two and three so as to minimize the risks in the two extremes. With complete removal, we eliminate the problem of the tumor but at the probable expense of the cranial nerves. With radiation, the single shot is not an option for a tumor my size. The multiple-session option on the other hand, poses no risk to the nerves but the certainty of successfully "killing" the tumor is called into question. Having a combination of the two seems like an elegant solution: have surgery to make the tumor smaller such that a small bazooka can safely be used. The beauty is that to make the tumor smaller, the surgeon can carve out the "core" of the tumor and leave the shell. I compare it to an orange. They'll take out the actual orange but leave the peel. Since the peel is the part that is either actually attached to or sticking to the nerves, then there is (hopefully) no actual contact between the surgeon's knife and the nerves. After a few months, we shoot the peel with a small bazooka, thereby "killing" it so that it doesn't grow into another orange.
Sounds like a plan to me.
Different Surgical Approaches
Having decided that surgery would be necessary to make the tumor small enough for radiation, I now had to decide on what surgical technique to use. (The choices never end!)
To make things more reader-friendly I'll call the three different techniques or pathways as follows:
1) Above the ear approach
2) Behind the ear approach
3) Back of the head approach
Approach (1) was quickly ruled out because it was only for small tumors.
Approach (2) is usually performed by a 2-man team composed of a neuro-otologist (easier to think of as an EENT Surgeon) and a neurosurgeon. The EENT surgeon carves out a path through the back of the ear leading to the tumor. Then the neurosurgeon takes over and does the actual tumor removal.
Approach (3) is usually performed by neurosurgeons. While they may also work in 2-man teams, they do basically the same work of carving out a path from the back of the skull until the tumor can be seen and removed. I think of the 2-man team in Approach (3) as being Batman and Robin, while the 2-man team in Approach (2) is Batman and the Green Arrow.
Each of the approaches have their pros and cons. As a general rule, neuro-otologists will say that Approach (2) is better; while neurosurgeons who do not work with neuro-otologists will say that Approach (3) is better. I have come to believe that they are both correct. The better, safer approach for each of these surgeons is what they are used to. Surgery is a physical act, and therefore "muscle memory" comes into play. A surgeon will do a better job repeating a procedure that he has performed many times before.
In the end, I have chosen to believe that the advantages of one approach over the other is not so significant that I should let my choice of approaches dictate my choice of doctors. Rather, I should let my choice of doctors dictate my choice of approaches.
To make things more reader-friendly I'll call the three different techniques or pathways as follows:
1) Above the ear approach
2) Behind the ear approach
3) Back of the head approach
Approach (1) was quickly ruled out because it was only for small tumors.
Approach (2) is usually performed by a 2-man team composed of a neuro-otologist (easier to think of as an EENT Surgeon) and a neurosurgeon. The EENT surgeon carves out a path through the back of the ear leading to the tumor. Then the neurosurgeon takes over and does the actual tumor removal.
Approach (3) is usually performed by neurosurgeons. While they may also work in 2-man teams, they do basically the same work of carving out a path from the back of the skull until the tumor can be seen and removed. I think of the 2-man team in Approach (3) as being Batman and Robin, while the 2-man team in Approach (2) is Batman and the Green Arrow.
Each of the approaches have their pros and cons. As a general rule, neuro-otologists will say that Approach (2) is better; while neurosurgeons who do not work with neuro-otologists will say that Approach (3) is better. I have come to believe that they are both correct. The better, safer approach for each of these surgeons is what they are used to. Surgery is a physical act, and therefore "muscle memory" comes into play. A surgeon will do a better job repeating a procedure that he has performed many times before.
In the end, I have chosen to believe that the advantages of one approach over the other is not so significant that I should let my choice of approaches dictate my choice of doctors. Rather, I should let my choice of doctors dictate my choice of approaches.
The Express
Just finished watching a movie on DVD - The Express. It's the story of Ernie Davies, an African-American football player who led Syracuse University to its first ever national championship, and who also went on to become the first African-American to win the Heisman Trophy, given to the most outstanding player in college football.
He was all set to begin his professional career in the National Football League when he learned that he had leukemia. He never played another football game and his life was cut short at the young age of 23.
The story drove home a point that I have been telling myself these past weeks. This condition that I have, I would much rather not have, but really, there are a lot of worse things that one can have. With my situation, there is a clear path towards resolution (in fact, there are too many of them). While with many other illnesses and conditions, not a single clear path towards resolution exist.
As for the one in thirty chance of not making it past surgery, well, I think I have probably been closer to death before. I once dozed off for a few seconds while driving a car on Freeway 5 somewhere between Los Angeles and San Diego. Whenever I remember those few seconds, I still shudder at the thought, and the probability of something bad happening at that point was probably higher than one in thirty.
Besides, if I were God, I probably would be in no rush to see me just yet.. :-)
He was all set to begin his professional career in the National Football League when he learned that he had leukemia. He never played another football game and his life was cut short at the young age of 23.
The story drove home a point that I have been telling myself these past weeks. This condition that I have, I would much rather not have, but really, there are a lot of worse things that one can have. With my situation, there is a clear path towards resolution (in fact, there are too many of them). While with many other illnesses and conditions, not a single clear path towards resolution exist.
As for the one in thirty chance of not making it past surgery, well, I think I have probably been closer to death before. I once dozed off for a few seconds while driving a car on Freeway 5 somewhere between Los Angeles and San Diego. Whenever I remember those few seconds, I still shudder at the thought, and the probability of something bad happening at that point was probably higher than one in thirty.
Besides, if I were God, I probably would be in no rush to see me just yet.. :-)
5 Ways You Can Help Me
1) Please try to read this blog thoroughly before asking me questions. I started this blog for the primary reason that I do not wish to answer the same questions over and over again. :-) I have come to realize that I am not a particularly "social" animal, I do not thrive on human contact as much as others. This does not mean I am anti-social, which means "angry at" or "against" people. I do need your warmth and your fellowship, but let's try to skip the repetitive questions. :-)
2) Try not to call me. SMS is fine. There are times I don't feel like talking because I worry you might ask me repetitive questions. :-) For those whose calls I might have ignored, I'm sorry.
3) If, and I mean if, you have any intention of visiting me, please wait until I start blogging again after my surgery. The fact that I am well enough to blog would mean I am well enough to appreciate your visit. Bring happy thoughts and happy faces. Thanks in advance.
4) At this point, after weeks of agonizing over different treatment options, I would really prefer not to hear about the "friend of a friend who had a sister whose husband's brother" had the same thing and who went there and did this. By this time, nine days before surgery, such well-meaning advice only adds doubt and turmoil, which makes things more difficult.
2) Try not to call me. SMS is fine. There are times I don't feel like talking because I worry you might ask me repetitive questions. :-) For those whose calls I might have ignored, I'm sorry.
3) If, and I mean if, you have any intention of visiting me, please wait until I start blogging again after my surgery. The fact that I am well enough to blog would mean I am well enough to appreciate your visit. Bring happy thoughts and happy faces. Thanks in advance.
4) At this point, after weeks of agonizing over different treatment options, I would really prefer not to hear about the "friend of a friend who had a sister whose husband's brother" had the same thing and who went there and did this. By this time, nine days before surgery, such well-meaning advice only adds doubt and turmoil, which makes things more difficult.
5) Help my family, try to make things easier for them. Try to check this blog for updates before asking them. It's not exactly an easy time for them too.
Thanks very very much!
The Golden AN
A little ditty, inspired by the one of the most successful Sesame Street sketches of all time (successful in the sense that I believe everyone around my age remembers it, even thirty years after, kinda sorta...)
So we'll take the golden AN,
and remove as much as we cAN,
then we shoot what's left with some rays from the doctor mAN...
Afterwards, I hope I can still drive the tAN vAN;
That's the plAN!
So we'll take the golden AN,
and remove as much as we cAN,
then we shoot what's left with some rays from the doctor mAN...
Afterwards, I hope I can still drive the tAN vAN;
That's the plAN!
Doctors
After leaving Dr. Libarnes' Cardinal clinic with my diagnosis on June 23, 2009 I consulted with 6 other doctors regarding treatment (Dr. Libarnes himself was not a surgeon, and therefore could not be responsible for my care). Overall, with the exception of one particular doctor from that hospital where politicians seek political asylum, I found them to be a great bunch, generally brilliant, compassionate, and kind. I'd like to mention some of them here:
Dr. Charlotte Chiong - Neuro-otologist, Capitol Medical Center. She partners with Dr. Gap Legaspi as the neurosurgeon, and together they form the Batman-Green Arrow team that performs Approach #2 surgeries. I did not have the opportunity to meet Dr. Legaspi. What I remember the most about Dr. Chiong was that she spent a full hour with me during the consult. Out of the corner of my eye, I kept sensing her secretary signalling to her that she had to be somewhere else soon, but her demeanor never changed, her patience never wavered.
Dr. Ed Mercado - Neurosurgeon, Cardinal Santos Medical Center. A dynamic personality who oozes competence and confidence. Can switch comfortably between boardroom English and street slang. In short, a cool guy who's the best at what he does. I've been trying to think which local actor I would choose to play him (since this is often a good way to describe someone). Probably Eddie Garcia (a younger Eddie Garcia of course).
Dr. Willy Lopez - Neurosurgeon, Medical City. More of the quiet, studious type. Radiates intellect and compassion. Probably to be played by Rowell Santiago. Rowell Santiago today, not Rowell Santiago of the Sharon Cuneta days.
Dr. C. F. Fung - Neurosurgeon, Private Clinic, Hong Kong. - Arguably Hong Kong's best. Level-headed, mature type who was remarkably gracious answering our questions mostly posted through my cousin Jarvis who's a doctor in Hong Kong, although eventually I did have a personal consult with him in early August. Closest guy I can think of to play him would be John Woo himself in a cameo role, wearing a crazy wig. :-)
My sister Jocelyn also had a number of phone consults with some US doctors, namely:
Dr. John Adler of the Stanford Medical Center
Dr. William Slattery of House Ear Institute
and
Dr. Michael McDermott of the UCSF Medical Center
Overall, these guys also left me with the same general impression: Brilliant, thoughtful, deliberate, with a touch of humor and compassion.
Now I had to pick one, a process which is infinitely more difficult than deciding on which actors would play them. :-)
In my family there was, I guess understandably, a strong preference to see me seek treatment in the US. I really do see their point; all other things being equal, the best US doctors are probably a bit better than the best Philippine doctors, only because they have better access to technology, and have had a larger pool of patients to gain experience on (because of the much larger US population). In fact, I remember that during my first consult with Dr. Mercado, I asked him the following question: "If I were your son, what would you advise me?" Even he acknowledged that he would send me to the US but only provided it was to one of the top 5 surgeons.
BUT, the way I looked at things, all other things were not equal. I told my family that surgical skill was only one factor, we also had to consider logistics, comfort, and resources. Dr. Mercado also inadvertently touched on this when he answered my question above. He said that Filipinos not only did not end up with the top 5 surgeons, they tend to end up in the US equivalents of Dumaguete or Cagayan de Oro, simply because these places were where their logistical support and resources were.
As Sun Tzu once said:
"When an army is dispatched on a distant campaign the expenses borne by the people together with the disbursements of the treasury will amount to a thousand pieces of gold daily. There will be continuous commotion both at home and abroad, people will be exhausted by the requirements of transport, and all affairs will be disrupted."
I told my family that I had no doubt they would be willing and ultimately able to help and support me whatever the resource requirements. But I asked them if such would be practical? Are the differences in technology and surgical skill so large and so clear that we should ignore all other considerations and seek treatment from top surgeons in the US? Difficult to answer, but I believe the answer is "no". I would much rather have very good treatment here at home, see my daughter before leaving for the hospital, and recover on my own bed.
In the end, after a few difficult weeks, I decided to go with Dr. Ed Mercado, for the following main reasons:
1) He inspires my confidence. For both tangible (i.e. reputation, record, etc.) and less tangible (i.e. demeanor, "connection", etc.) reasons.
2) I am comfortable with his methodology - to "debulk" the tumor or make it smaller by removing its core, leaving behind the shell which will later on be "killed" via Gamma Knife radiosurgery. In my layman's mind, I am convinced this method provides the best odds of leaving the cranial nerves intact.
3) I have a preference for having treatment in the Philippines and recovering at home.
Accompanied by Kathy and my sister Christine, we went to see Dr. Mercado last August 6 to set a surgery date. I am at peace with the decision. I believe God was with us then, and I believe He will be with me six days from now...
Dr. Charlotte Chiong - Neuro-otologist, Capitol Medical Center. She partners with Dr. Gap Legaspi as the neurosurgeon, and together they form the Batman-Green Arrow team that performs Approach #2 surgeries. I did not have the opportunity to meet Dr. Legaspi. What I remember the most about Dr. Chiong was that she spent a full hour with me during the consult. Out of the corner of my eye, I kept sensing her secretary signalling to her that she had to be somewhere else soon, but her demeanor never changed, her patience never wavered.
Dr. Ed Mercado - Neurosurgeon, Cardinal Santos Medical Center. A dynamic personality who oozes competence and confidence. Can switch comfortably between boardroom English and street slang. In short, a cool guy who's the best at what he does. I've been trying to think which local actor I would choose to play him (since this is often a good way to describe someone). Probably Eddie Garcia (a younger Eddie Garcia of course).
Dr. Willy Lopez - Neurosurgeon, Medical City. More of the quiet, studious type. Radiates intellect and compassion. Probably to be played by Rowell Santiago. Rowell Santiago today, not Rowell Santiago of the Sharon Cuneta days.
Dr. C. F. Fung - Neurosurgeon, Private Clinic, Hong Kong. - Arguably Hong Kong's best. Level-headed, mature type who was remarkably gracious answering our questions mostly posted through my cousin Jarvis who's a doctor in Hong Kong, although eventually I did have a personal consult with him in early August. Closest guy I can think of to play him would be John Woo himself in a cameo role, wearing a crazy wig. :-)
My sister Jocelyn also had a number of phone consults with some US doctors, namely:
Dr. John Adler of the Stanford Medical Center
Dr. William Slattery of House Ear Institute
and
Dr. Michael McDermott of the UCSF Medical Center
Overall, these guys also left me with the same general impression: Brilliant, thoughtful, deliberate, with a touch of humor and compassion.
Now I had to pick one, a process which is infinitely more difficult than deciding on which actors would play them. :-)
In my family there was, I guess understandably, a strong preference to see me seek treatment in the US. I really do see their point; all other things being equal, the best US doctors are probably a bit better than the best Philippine doctors, only because they have better access to technology, and have had a larger pool of patients to gain experience on (because of the much larger US population). In fact, I remember that during my first consult with Dr. Mercado, I asked him the following question: "If I were your son, what would you advise me?" Even he acknowledged that he would send me to the US but only provided it was to one of the top 5 surgeons.
BUT, the way I looked at things, all other things were not equal. I told my family that surgical skill was only one factor, we also had to consider logistics, comfort, and resources. Dr. Mercado also inadvertently touched on this when he answered my question above. He said that Filipinos not only did not end up with the top 5 surgeons, they tend to end up in the US equivalents of Dumaguete or Cagayan de Oro, simply because these places were where their logistical support and resources were.
As Sun Tzu once said:
"When an army is dispatched on a distant campaign the expenses borne by the people together with the disbursements of the treasury will amount to a thousand pieces of gold daily. There will be continuous commotion both at home and abroad, people will be exhausted by the requirements of transport, and all affairs will be disrupted."
I told my family that I had no doubt they would be willing and ultimately able to help and support me whatever the resource requirements. But I asked them if such would be practical? Are the differences in technology and surgical skill so large and so clear that we should ignore all other considerations and seek treatment from top surgeons in the US? Difficult to answer, but I believe the answer is "no". I would much rather have very good treatment here at home, see my daughter before leaving for the hospital, and recover on my own bed.
In the end, after a few difficult weeks, I decided to go with Dr. Ed Mercado, for the following main reasons:
1) He inspires my confidence. For both tangible (i.e. reputation, record, etc.) and less tangible (i.e. demeanor, "connection", etc.) reasons.
2) I am comfortable with his methodology - to "debulk" the tumor or make it smaller by removing its core, leaving behind the shell which will later on be "killed" via Gamma Knife radiosurgery. In my layman's mind, I am convinced this method provides the best odds of leaving the cranial nerves intact.
3) I have a preference for having treatment in the Philippines and recovering at home.
Accompanied by Kathy and my sister Christine, we went to see Dr. Mercado last August 6 to set a surgery date. I am at peace with the decision. I believe God was with us then, and I believe He will be with me six days from now...
Aug. 1-4: Hong Kong and the Resolution of the Final Doubts
Back in early July, after I learned of my condition and the possibly risky treatment and potentially lengthy recovery, I resigned from my job of the last four years. We agreed with my employers that July 31, 2009 would be my last day.
So I decided that the first few days of August would be a good time for a trip to Hong Kong for some R,R & G - Rest, Relaxation, and Gluttony :-) before making the final decision on choice of treatment. What can I say; I love food. If I had to make a "bucket list" ala Jack Nicholson/Morgan Freeman, half the list would probably involve food. :-)
I went with Kathy but set the ground rules early: no shopping, no lugging around shopping bags. The trip would be built around the eight meals.
True enough, our first five meals were planned and carried out with military precision:
Lunch, Aug. 1 - DIN TAI FUNG, The Concord Mall, Tsimshatsui. I first tasted Din Tai Fung dumplings on a trip to Singapore in early 2008, and had made it my life's mission to taste it again. We had two orders of the xiaolongpao and one order of their distinctive siomai. Good thing we did not attempt to go to the original Hong Kong branch located at the less accessible Whampoa Gardens. We learned at this newer outlet that the original store was a franchise that had, in the words of the manager we spoke to, "disappeared". This company-owned outlet in Tsimshatsui was apparently now the sole option for having Din Tai Fung dumplings in Hong Kong.
Dinner, Aug. 1 - MAIN STREET DELI, The Langham Hotel, Tsimshatsui. The Reuben sandwich was great, and unexpectedly turned out to be the most memorable experience of the trip.
Lunch, Aug. 2 - SERENADE RESTAURANT, Hong Kong Cultural Center, Kowloon. We had lunch with my cousin Jarvis and my nephew Paul. She originally offered to take us to the more expensive Victoria City, but I told her I would prefer some place with a more extensive dimsum menu, so we settled on Maxim's City Hall near Hong Kong Harbor, but since that was under renovation, we ended up at Serenade, also part of the Maxim's Group but located parallel on the opposite harbor. Great selection, great dimsum.
Dinner, Aug. 2 - CRYSTAL JADE, IFC Mall, Central District. Although there are a number of other Crystal Jade branches in Hong Kong, I picked this one because I thought I remembered it would be the shortest distance from the MTR trains. Boy was I wrong! :-)
Lunch, Aug. 3 - FU SING, Sunshine Plaza, Wan Chai. When we stepped out of the Lockhart Road Exit of the Wan Chai MTR station and found ourselves amid the hardware stores and tile shops, I am sure what went through Kathy's mind was "How could there possibly be a good restaurant here??" :-) But there it was, hidden away inside a building, Fu Sing. Not a wide dimsum selection, but arguably the best asado in Hong Kong, and distinctive radish cake.
After five meals though, I realized that I had not tasted anything great. Much as I did not want to, I had to accept that my appetite had been affected by my state of mind. Food simply did not seem to have the same flavor. I made up my mind that the new mission was to get well, return to Hong Kong, and do this all over again. :-)
One good development during the Hong Kong trip was that quite unexpectedly, I got to talk with Dr. Fung and was able to settle some remaining doubts in my mind. At that point I was leaning towards Dr. Mercado, but had some lingering concerns that his "back-of-the-head" surgical approach might be a bit more risky than the "through-the-ear" approach. I had heard that doing things through the back of the head involved moving aside the brain stem and the cerebellum (I can't remember where exactly I heard that information, but most likely it was from my sister Shirley, who had by this time made it her mission in life to know all there is to know about ANs), which struck me as particularly risky-sounding.
On Aug. 3 my cousin Jarvis called me at 10:30 in the morning and told me that if I wanted some time with Dr. Fung, he could accomodate me at 11:00 before his clinic hours officially started. My first thought was, of course, "that's 30 minutes from now!" but it's a good thing Hong Kong is such a compact city because we actually made it. And I'm glad we did. Dr. Fung was able to explain that a tumor my size was already in contact with both the cerebellum and the brain stem, so involvement of the cerebellum and the brain stem was unavoidable whichever approach was used. More importantly, he informed me that both the cerebellum and the brain stem were not overly sensitive structures and would be able to withstand a fair amount of "movement". If indeed these ended up damaged during surgery, it would be because the surgeon was incompetent and not because of the approach he used.
That's when I decided, as I described in a previous post, that I would let my choice of doctors dictate my choice of surgical approaches, instead of the other way around.
Then we left for Fu Sing... :-)
So I decided that the first few days of August would be a good time for a trip to Hong Kong for some R,R & G - Rest, Relaxation, and Gluttony :-) before making the final decision on choice of treatment. What can I say; I love food. If I had to make a "bucket list" ala Jack Nicholson/Morgan Freeman, half the list would probably involve food. :-)
I went with Kathy but set the ground rules early: no shopping, no lugging around shopping bags. The trip would be built around the eight meals.
True enough, our first five meals were planned and carried out with military precision:
Lunch, Aug. 1 - DIN TAI FUNG, The Concord Mall, Tsimshatsui. I first tasted Din Tai Fung dumplings on a trip to Singapore in early 2008, and had made it my life's mission to taste it again. We had two orders of the xiaolongpao and one order of their distinctive siomai. Good thing we did not attempt to go to the original Hong Kong branch located at the less accessible Whampoa Gardens. We learned at this newer outlet that the original store was a franchise that had, in the words of the manager we spoke to, "disappeared". This company-owned outlet in Tsimshatsui was apparently now the sole option for having Din Tai Fung dumplings in Hong Kong.
Dinner, Aug. 1 - MAIN STREET DELI, The Langham Hotel, Tsimshatsui. The Reuben sandwich was great, and unexpectedly turned out to be the most memorable experience of the trip.
Lunch, Aug. 2 - SERENADE RESTAURANT, Hong Kong Cultural Center, Kowloon. We had lunch with my cousin Jarvis and my nephew Paul. She originally offered to take us to the more expensive Victoria City, but I told her I would prefer some place with a more extensive dimsum menu, so we settled on Maxim's City Hall near Hong Kong Harbor, but since that was under renovation, we ended up at Serenade, also part of the Maxim's Group but located parallel on the opposite harbor. Great selection, great dimsum.
Dinner, Aug. 2 - CRYSTAL JADE, IFC Mall, Central District. Although there are a number of other Crystal Jade branches in Hong Kong, I picked this one because I thought I remembered it would be the shortest distance from the MTR trains. Boy was I wrong! :-)
Lunch, Aug. 3 - FU SING, Sunshine Plaza, Wan Chai. When we stepped out of the Lockhart Road Exit of the Wan Chai MTR station and found ourselves amid the hardware stores and tile shops, I am sure what went through Kathy's mind was "How could there possibly be a good restaurant here??" :-) But there it was, hidden away inside a building, Fu Sing. Not a wide dimsum selection, but arguably the best asado in Hong Kong, and distinctive radish cake.
After five meals though, I realized that I had not tasted anything great. Much as I did not want to, I had to accept that my appetite had been affected by my state of mind. Food simply did not seem to have the same flavor. I made up my mind that the new mission was to get well, return to Hong Kong, and do this all over again. :-)
One good development during the Hong Kong trip was that quite unexpectedly, I got to talk with Dr. Fung and was able to settle some remaining doubts in my mind. At that point I was leaning towards Dr. Mercado, but had some lingering concerns that his "back-of-the-head" surgical approach might be a bit more risky than the "through-the-ear" approach. I had heard that doing things through the back of the head involved moving aside the brain stem and the cerebellum (I can't remember where exactly I heard that information, but most likely it was from my sister Shirley, who had by this time made it her mission in life to know all there is to know about ANs), which struck me as particularly risky-sounding.
On Aug. 3 my cousin Jarvis called me at 10:30 in the morning and told me that if I wanted some time with Dr. Fung, he could accomodate me at 11:00 before his clinic hours officially started. My first thought was, of course, "that's 30 minutes from now!" but it's a good thing Hong Kong is such a compact city because we actually made it. And I'm glad we did. Dr. Fung was able to explain that a tumor my size was already in contact with both the cerebellum and the brain stem, so involvement of the cerebellum and the brain stem was unavoidable whichever approach was used. More importantly, he informed me that both the cerebellum and the brain stem were not overly sensitive structures and would be able to withstand a fair amount of "movement". If indeed these ended up damaged during surgery, it would be because the surgeon was incompetent and not because of the approach he used.
That's when I decided, as I described in a previous post, that I would let my choice of doctors dictate my choice of surgical approaches, instead of the other way around.
Then we left for Fu Sing... :-)
Technology Adventure
I'm planning ahead here...
Theoretically, there shouldn't be any problems blogging from my hospital bed. Cellphones are like small computers these days and as long as I can pick up some GPRS signal from my room, I can access Blogger.com and blog away.
But what if the cellular signal is weak and I can't pick up any GPRS signals, then internet access becomes unavailable.
Supposedly though, I can send email to a specific email address provided by Blogger.com and that email gets posted as a blog entry automatically. That's nice, but in itself it doesn't solve anything since without a GPRS signal, it'll also be impossible to access email from my phone.
But, supposedly also, I can send email as an SMS message via a Smart cellphone, so if I put these two together, then theoretically, as long as I have enough of a cellular signal to send SMS, then I can send email via SMS, and get the contents posted automatically on my blog. I'll be limited to 140 characters per email though, so we'll be getting Twitter-like posts. Still, that's a pretty impressive, McGyver-ish leap. No PC, no wifi, no 3G, no EDGE, not even GPRS. Only SMS straight into a blog entry.
I'm going to give it a try a bit later, after I figure out the Smart email via SMS thing. If it actually works, I'll be very impressed. :-)
Theoretically, there shouldn't be any problems blogging from my hospital bed. Cellphones are like small computers these days and as long as I can pick up some GPRS signal from my room, I can access Blogger.com and blog away.
But what if the cellular signal is weak and I can't pick up any GPRS signals, then internet access becomes unavailable.
Supposedly though, I can send email to a specific email address provided by Blogger.com and that email gets posted as a blog entry automatically. That's nice, but in itself it doesn't solve anything since without a GPRS signal, it'll also be impossible to access email from my phone.
But, supposedly also, I can send email as an SMS message via a Smart cellphone, so if I put these two together, then theoretically, as long as I have enough of a cellular signal to send SMS, then I can send email via SMS, and get the contents posted automatically on my blog. I'll be limited to 140 characters per email though, so we'll be getting Twitter-like posts. Still, that's a pretty impressive, McGyver-ish leap. No PC, no wifi, no 3G, no EDGE, not even GPRS. Only SMS straight into a blog entry.
I'm going to give it a try a bit later, after I figure out the Smart email via SMS thing. If it actually works, I'll be very impressed. :-)
Technology Test
This entry was posted via a text message from a Smart cellphone.
Well I'll be damned... :-)
---
Txt msg to the Philippines (Ex. 639197654321@mail2.ph).
Well I'll be damned... :-)
---
Txt msg to the Philippines (Ex. 639197654321@mail2.ph).
What I Believe About God
I do not believe, as I think my mother does :-), that my condition is some sort of divine punishment from God.
Let me be very clear. I am not saying that I have not done anything worthy of punishment. Let me say it here and now: I am a sinner. It's just that I do not believe God doles out earthly rewards and punishments in a pattern that is recognizable to human logic. I think the Biblical story of Job supports this conclusion. God allows trials and tribulations into our lives for different reasons.
Furthermore, I do not even think the human mind is capable of discerning what is a real blessing and a real punishment. For instance, most, if no all of us would think of a financial windfall as a blessing, but I really cannot imagine that God will use money as a reward, when the Bible says that the love of money is the root of all evil.
I remember a story I heard when I was a young boy; I believe it's a Chinese story meant to illustrate the unpredictability of fortunes:
There was once a poor farmer.
One day his horse, his prized possession, ran away.
"What misfortune!" his neighbors cried.
But a few days later, the horse not only found its way home, but also brought along a wild horse it had befriended.
"What luck!" his neighbors shouted.
However, a few days later, the farmer's son, while trying to "tame" the wild horse, fell off and broke his leg.
"What misfortune!"
But that very same day, a government draft board came into town to draft soldiers into the army to fight a bloody war. They skipped over the farmer's son when they saw he had a broken leg.
"What luck!"
A similar theme also runs through the lives of several Biblical characters: Moses comes immediately to mind. Joseph too. My point is that I am not taking this condition of mine as a particularly bad thing, because sometimes God uses these things to take us to a better place.
Lastly, I also believe that being a Christian doesn't mean that real earthly misfortune will not befall me. That is not my pact with God. I will not say to God that I will be a Christian so I expect a smooth life. I do not believe that God promises us any such thing on our earthly journey. What He does promise us is in the eternal afterlife.
These are the things that I believe about God in the context of what I am going through now.
Let there be no misunderstanding - I must ask for forgiveness for my sins. But that is something I must do always, and not only when perceived "misfortune" falls upon me.
I seek guidance, then leave myself in His hands; because after all is said and done, He knows best.
Let me be very clear. I am not saying that I have not done anything worthy of punishment. Let me say it here and now: I am a sinner. It's just that I do not believe God doles out earthly rewards and punishments in a pattern that is recognizable to human logic. I think the Biblical story of Job supports this conclusion. God allows trials and tribulations into our lives for different reasons.
Furthermore, I do not even think the human mind is capable of discerning what is a real blessing and a real punishment. For instance, most, if no all of us would think of a financial windfall as a blessing, but I really cannot imagine that God will use money as a reward, when the Bible says that the love of money is the root of all evil.
I remember a story I heard when I was a young boy; I believe it's a Chinese story meant to illustrate the unpredictability of fortunes:
There was once a poor farmer.
One day his horse, his prized possession, ran away.
"What misfortune!" his neighbors cried.
But a few days later, the horse not only found its way home, but also brought along a wild horse it had befriended.
"What luck!" his neighbors shouted.
However, a few days later, the farmer's son, while trying to "tame" the wild horse, fell off and broke his leg.
"What misfortune!"
But that very same day, a government draft board came into town to draft soldiers into the army to fight a bloody war. They skipped over the farmer's son when they saw he had a broken leg.
"What luck!"
A similar theme also runs through the lives of several Biblical characters: Moses comes immediately to mind. Joseph too. My point is that I am not taking this condition of mine as a particularly bad thing, because sometimes God uses these things to take us to a better place.
Lastly, I also believe that being a Christian doesn't mean that real earthly misfortune will not befall me. That is not my pact with God. I will not say to God that I will be a Christian so I expect a smooth life. I do not believe that God promises us any such thing on our earthly journey. What He does promise us is in the eternal afterlife.
These are the things that I believe about God in the context of what I am going through now.
Let there be no misunderstanding - I must ask for forgiveness for my sins. But that is something I must do always, and not only when perceived "misfortune" falls upon me.
I seek guidance, then leave myself in His hands; because after all is said and done, He knows best.
Crunch Time Reflections
Well, here we are... crunch time. We're now officially less than three days away from start of surgery.
I'm a bit nervous of course. I don't really consider myself to be a particularly brave man. I'm not panicky though, I'm embracing my destiny and not running away from it.
"Brain surgery" : the words sound grave no matter how I say them. But really, as I've said before, my situation is not as bad as other possible scenarios. We're not going into the deepest recesses of the brain and we're not dealing with anything malignant. If you're going to have a brain tumor, mine is probably the best to have.
Ironically, it's our fifth anniversary today. Maybe we'll do something with Steffi later. On the left you'll find one of my favorite pictures. It was taken in Camp John Hay, Baguio, earlier this year in relatively more "carefree" times.
I like it because Steffi seems so happy, although there's an inside story as to what she is really laughing about. :-) But overall it makes for a good, happy picture.
My goal is to return to this spot within two years and take this picture again.
Last night I asked myself what regrets I have. Oddly, I really feel like I have no regrets. I say "oddly" because I know I've made many mistakes in my life, but somehow there are no nagging, gnawing regrets. Maybe it is an instinctive human mechanism wherein over time, we make ourselves feel better about the mistakes we made. As Ernest Hemingway said: "A man can be destroyed but not defeated."
The poker player Stu Ungar said sometime near the end of his life something to the effect that all the bad things he did in his life, he did to himself. I know that such a statement is wrong, because we cannot hurt ourselves without hurting those who love us, so there is no such thing as doing bad things that hurt only ourselves. Furthermore, any bad act is a sin against God, regardless of who is the object.
Still, I do have some appreciation of the sentiment behind his statement. What he meant was that he never consciously did harm to others, and I would agree that, "that" is worth something. I think of myself the same way. I'd like to think that no one is worse off from having encountered me in his or her life. From the people I know intimately, to the people I encounter briefly on the street, I'd like to think that they encountered kindness and gentleness.
Ironically, I think the two people I treated worst in my life are my mother and my wife.
On second thought, maybe this is not surprising at all. Since they affect my life the most, I guess it is to be expected that it is with them that I will address differences of opinion.
With my mother, the differences in philosophy and thought processes are so vast that I really doubt we can have a totally harmonious relationship in this life. But bottom line, I know she loves me and she knows (I think) that I love her. I know we will have much better relationship in the afterlife.
As for my wife, I think there is much more room to show her my appreciation. But I'll address that after my surgery. :-) One problem at a time.
At the end of the day, I would like to be remembered as a "good and decent man". But hopefully, there will be no need for such remembering just yet... :-)
I'm a bit nervous of course. I don't really consider myself to be a particularly brave man. I'm not panicky though, I'm embracing my destiny and not running away from it.
"Brain surgery" : the words sound grave no matter how I say them. But really, as I've said before, my situation is not as bad as other possible scenarios. We're not going into the deepest recesses of the brain and we're not dealing with anything malignant. If you're going to have a brain tumor, mine is probably the best to have.
Ironically, it's our fifth anniversary today. Maybe we'll do something with Steffi later. On the left you'll find one of my favorite pictures. It was taken in Camp John Hay, Baguio, earlier this year in relatively more "carefree" times.I like it because Steffi seems so happy, although there's an inside story as to what she is really laughing about. :-) But overall it makes for a good, happy picture.
My goal is to return to this spot within two years and take this picture again.
Last night I asked myself what regrets I have. Oddly, I really feel like I have no regrets. I say "oddly" because I know I've made many mistakes in my life, but somehow there are no nagging, gnawing regrets. Maybe it is an instinctive human mechanism wherein over time, we make ourselves feel better about the mistakes we made. As Ernest Hemingway said: "A man can be destroyed but not defeated."
The poker player Stu Ungar said sometime near the end of his life something to the effect that all the bad things he did in his life, he did to himself. I know that such a statement is wrong, because we cannot hurt ourselves without hurting those who love us, so there is no such thing as doing bad things that hurt only ourselves. Furthermore, any bad act is a sin against God, regardless of who is the object.
Still, I do have some appreciation of the sentiment behind his statement. What he meant was that he never consciously did harm to others, and I would agree that, "that" is worth something. I think of myself the same way. I'd like to think that no one is worse off from having encountered me in his or her life. From the people I know intimately, to the people I encounter briefly on the street, I'd like to think that they encountered kindness and gentleness.
Ironically, I think the two people I treated worst in my life are my mother and my wife.
On second thought, maybe this is not surprising at all. Since they affect my life the most, I guess it is to be expected that it is with them that I will address differences of opinion.
With my mother, the differences in philosophy and thought processes are so vast that I really doubt we can have a totally harmonious relationship in this life. But bottom line, I know she loves me and she knows (I think) that I love her. I know we will have much better relationship in the afterlife.
As for my wife, I think there is much more room to show her my appreciation. But I'll address that after my surgery. :-) One problem at a time.
At the end of the day, I would like to be remembered as a "good and decent man". But hopefully, there will be no need for such remembering just yet... :-)
Game Time
Ok, here we go...
I am scheduled to check in around noon of Monday. I'll spend the rest of the day getting preliminary tests and, I suppose, being checked up on by the medical team. I suppose I'll get to speak with the anesthesiologists (who play a big part in this) and also with Dr. Mercado to go over the details of my surgery one last time.
I get wheeled into the OR very early Tuesday morning, where Dr. Mercado and his partner Dr. Gimenes will spend the next 5-7 hours drilling a hole through the back of my head and "carving" out the core of the tumor. As agreed upon they will leave the "shell" of the tumor untouched, so that there will no attempt to separate tumor from nerve.
After the operation I'll be kept asleep for another 24 hours using Propofol, the drug that Michael Jackson was "abusing" to manage his sleep. Throughout this 24 hour period they'll awaken me a few times (simply by stopping the Propofol drip) to check my responses before starting the drip again and putting me under. I'll also be on a respirator throughout this time.
Therefore I really only begin the process of coming out of surgery sometime Wednesday afternoon. By that time, I imagine I'll be groggy, weak, and in some pain; but if all goes according to plan, I should have all my mental and physical faculties intact. Except of course, if there are complications.
Ahh, the dreaded complications. I guess this whole affair would be boring without them. :-)
I've been "quoted" a 3-5% possibility of death. I'm guessing this is probably on the conservative side, the true odds are probably around 2%. Still, 2% would mean that one out of fifty patients never make it out, and that's a fairly scary thought. But I guess this possibility comes with the territory. Anytime someone goes under the knife, he exposes himself to this possibility. People die undergoing liposuction; and let me tell you, if you have go this way, "brain surgery" certainly sounds a whole lot better to me than "butt reduction". :-)
The complication I worry the most about is hydrocephalus. Literally, "water in the head". The condition can be caused if cerebrospinal fluid does not circulate well and begins to build up in the brain, causing increased intercranial pressure. The way I understand it, my brain structures have been in a constant state of compression for quite some time now (because of the tumor pressing on these structures) that ironically, relieving this compression might actually impact circulation negatively and cause the build-up of cerebrospinal fluid. Of all the complications, I dread this one the most, because it is the only one that has the potential to decrease IQ. (Note: death does not decrease IQ, it eliminates it.) Being already of low IQ I do not wish to diminish it further. :-) For that would leave me with only my good looks and lights-out three-point shooting ability to earn a living for my family. :-)
Lastly we might also have complications if things do not go entirely as planned and there is some damage to either the cranial nerves, the cerebellum, or the brain stem. I could end up with some physical problems (i.e. coordination, difficulty walking, facial palsy, difficulty swallowing, etc etc etc)
There are probably more possible complications. But these are bad enough that I do not wish to continue learning about the others. :-)
So there. If you've read this far, I thank you. Keep me in your thoughts and prayers. Forgive me for saying this, but review the 5 Ways You Can Help Me. Once surgery begins, pay especially close attention to No. 5: Help my family. Be supportive. Do not pepper them with questions and "what-ifs", both well-meaning and otherwise.
I thank you all...
I am scheduled to check in around noon of Monday. I'll spend the rest of the day getting preliminary tests and, I suppose, being checked up on by the medical team. I suppose I'll get to speak with the anesthesiologists (who play a big part in this) and also with Dr. Mercado to go over the details of my surgery one last time.
I get wheeled into the OR very early Tuesday morning, where Dr. Mercado and his partner Dr. Gimenes will spend the next 5-7 hours drilling a hole through the back of my head and "carving" out the core of the tumor. As agreed upon they will leave the "shell" of the tumor untouched, so that there will no attempt to separate tumor from nerve.
After the operation I'll be kept asleep for another 24 hours using Propofol, the drug that Michael Jackson was "abusing" to manage his sleep. Throughout this 24 hour period they'll awaken me a few times (simply by stopping the Propofol drip) to check my responses before starting the drip again and putting me under. I'll also be on a respirator throughout this time.
Therefore I really only begin the process of coming out of surgery sometime Wednesday afternoon. By that time, I imagine I'll be groggy, weak, and in some pain; but if all goes according to plan, I should have all my mental and physical faculties intact. Except of course, if there are complications.
Ahh, the dreaded complications. I guess this whole affair would be boring without them. :-)
I've been "quoted" a 3-5% possibility of death. I'm guessing this is probably on the conservative side, the true odds are probably around 2%. Still, 2% would mean that one out of fifty patients never make it out, and that's a fairly scary thought. But I guess this possibility comes with the territory. Anytime someone goes under the knife, he exposes himself to this possibility. People die undergoing liposuction; and let me tell you, if you have go this way, "brain surgery" certainly sounds a whole lot better to me than "butt reduction". :-)
The complication I worry the most about is hydrocephalus. Literally, "water in the head". The condition can be caused if cerebrospinal fluid does not circulate well and begins to build up in the brain, causing increased intercranial pressure. The way I understand it, my brain structures have been in a constant state of compression for quite some time now (because of the tumor pressing on these structures) that ironically, relieving this compression might actually impact circulation negatively and cause the build-up of cerebrospinal fluid. Of all the complications, I dread this one the most, because it is the only one that has the potential to decrease IQ. (Note: death does not decrease IQ, it eliminates it.) Being already of low IQ I do not wish to diminish it further. :-) For that would leave me with only my good looks and lights-out three-point shooting ability to earn a living for my family. :-)
Lastly we might also have complications if things do not go entirely as planned and there is some damage to either the cranial nerves, the cerebellum, or the brain stem. I could end up with some physical problems (i.e. coordination, difficulty walking, facial palsy, difficulty swallowing, etc etc etc)
There are probably more possible complications. But these are bad enough that I do not wish to continue learning about the others. :-)
So there. If you've read this far, I thank you. Keep me in your thoughts and prayers. Forgive me for saying this, but review the 5 Ways You Can Help Me. Once surgery begins, pay especially close attention to No. 5: Help my family. Be supportive. Do not pepper them with questions and "what-ifs", both well-meaning and otherwise.
I thank you all...
Night Before
All systems go, surgery in nine hours. Wonder if i'll get any sleep tonight.
I hope all goes well.
Signing off...
I hope all goes well.
Signing off...
Intensive Care Friday
Stili in intensive care. Things look well. Think i have everything back, but very weak, head very heavy. Eating jello, first time in 3.5 days. Don't come yet.
The real Friday
Apparently yesterday was Thursday and now is the real Friday. Finally out of ICU into my regular rm 318. Still pretty immobile. Weak, heavy head. Angry at my nurse most of the time.
Hotdog Solves Small Crisis
As of last night there was a small crisis of unsolvable hiccups. Finally resolved this morning with small hotdog. Apparently total lack of food for 4 days had thrown body off. Things looking up i think.
Sunday Update
I should actually be quite well now if not for this maddenning case of hiccups. It's normal though, so at least it doesn't suggest that something has gone wrong. If all goes according to plan, I'll get a scan Monday, and be released Tuesday, and continue these hiccups at home.
A New World
As of around 11pm Sunday they've removed the last IV tube. I hope in the nxt few hours it will allow me to slowly and gingerly explore my post-op world. I've not seen myself in the mirror for almost a week now. Haven't shaved, haven't made pooh-pooh as man was meant to pooh-pooh.
This moving arround will also help me conquer a hospitalized man's horror hours - the time from 10 - 6 when the rest of the world goes to sleep but a hospitalized man finds himself wide awake and all alone.
Lastly, i suspect that as my body senses a return to the normal, the hiccups will stop.
This all a bit not covered by official doctors' orders, but i think both my wife and sister feel it is not widely irresponsible and sounds a bit logical...
So we'll see...
This moving arround will also help me conquer a hospitalized man's horror hours - the time from 10 - 6 when the rest of the world goes to sleep but a hospitalized man finds himself wide awake and all alone.
Lastly, i suspect that as my body senses a return to the normal, the hiccups will stop.
This all a bit not covered by official doctors' orders, but i think both my wife and sister feel it is not widely irresponsible and sounds a bit logical...
So we'll see...
A New World - the Results
I shaved
I wee-weed like a grown man
I poo-poohed like a grown man.
Now dressed in an old pair of Nike shorts, an old t-shirt and standard hanes briefs, but i feel like a million bucks.
The hiccups really went away but came back after I lay back down. I may have to wait 3 hours until they come pick me up for the CT SCAN, but i feel we've turned a good corner
I wee-weed like a grown man
I poo-poohed like a grown man.
Now dressed in an old pair of Nike shorts, an old t-shirt and standard hanes briefs, but i feel like a million bucks.
The hiccups really went away but came back after I lay back down. I may have to wait 3 hours until they come pick me up for the CT SCAN, but i feel we've turned a good corner
Liberation Day
Scheduled for discharge today, Tuesday, exactly eight days into this process. Hope everything goes according to plan, I'm excited for things to be more 'normal'.
The Week That Was : Aug. 17-26, 2009
As most of you know, I underwent brain surgery last week, on the morning of August 18, to be exact.
The purpose of the surgery was to get me ready for the second stage of my treatment plan: Gamma Knife Radiation. So let me be very clear, I am at this point by no means rid of my tumor yet. About half of it is still there. This is by choice, we will leave it there, although we will radiate it, "kill" it so that it doesn't start to grow again. Ironically, the first stage is by far the more difficult and more invasive. The radiation should be relatively easier to get through. So I'm glad we've more or less gotten past this first stage. We just have to wait a few months for the swelling to go down, for the tissues to stabilize, and then we can radiate. The reason we could not go go directly into radiation was because my tumor was already quite large and the necessary dosage of radiation might be harmful to my brain, so we made it smaller first.
In a month or two I'll get a new mri and I can put up a comparative scan so we can all see how much exactly is left.
The more inqusitive among you may ask, having gone ahead with actual surgery, why not just go for the whole enchilada and try to take the whole thing out. Yes, this was an option. BUT, the more we tried to take out, the more we risked taking out bits and pieces of nerves, which would leave me with possible functional losses such as facial paralysis, inability to swallow, coordination problems, etc. Those were risks I did not want to take.
So from the start, I made it very clear to my surgeons, Dr. Eduardo Mercado and Dr. Michael Louise Gimenez, that I wanted to err on the side of caution and preserve function at all costs. I thank those two fine surgeons for respecting my wishes. In a way, it was a bit of a dis-service to them because implicit in those wishes was an "order" to undershoot perfection; and in short, I may have kept them from full fullfillment of their craft. So I thank them as much for their skill as their humility and humanity.
In my mind the resuts are beautiful. I have my matinee-idol smile back in full radiance. I feel no loss in coordination and can swallow perfectly normally, something which will be critical to the food trips to come.
I do have some unconrollable hiccupping and GI disturbances, but in all, while very bothersome, I consider these very minor and I believe wholeheartedly that they should resolve on their own. My brain is not swelling up, and I believe I've lost no functions.
In short, I'm Back!
The purpose of the surgery was to get me ready for the second stage of my treatment plan: Gamma Knife Radiation. So let me be very clear, I am at this point by no means rid of my tumor yet. About half of it is still there. This is by choice, we will leave it there, although we will radiate it, "kill" it so that it doesn't start to grow again. Ironically, the first stage is by far the more difficult and more invasive. The radiation should be relatively easier to get through. So I'm glad we've more or less gotten past this first stage. We just have to wait a few months for the swelling to go down, for the tissues to stabilize, and then we can radiate. The reason we could not go go directly into radiation was because my tumor was already quite large and the necessary dosage of radiation might be harmful to my brain, so we made it smaller first.
In a month or two I'll get a new mri and I can put up a comparative scan so we can all see how much exactly is left.
The more inqusitive among you may ask, having gone ahead with actual surgery, why not just go for the whole enchilada and try to take the whole thing out. Yes, this was an option. BUT, the more we tried to take out, the more we risked taking out bits and pieces of nerves, which would leave me with possible functional losses such as facial paralysis, inability to swallow, coordination problems, etc. Those were risks I did not want to take.
So from the start, I made it very clear to my surgeons, Dr. Eduardo Mercado and Dr. Michael Louise Gimenez, that I wanted to err on the side of caution and preserve function at all costs. I thank those two fine surgeons for respecting my wishes. In a way, it was a bit of a dis-service to them because implicit in those wishes was an "order" to undershoot perfection; and in short, I may have kept them from full fullfillment of their craft. So I thank them as much for their skill as their humility and humanity.
In my mind the resuts are beautiful. I have my matinee-idol smile back in full radiance. I feel no loss in coordination and can swallow perfectly normally, something which will be critical to the food trips to come.
I do have some unconrollable hiccupping and GI disturbances, but in all, while very bothersome, I consider these very minor and I believe wholeheartedly that they should resolve on their own. My brain is not swelling up, and I believe I've lost no functions.
In short, I'm Back!
Cardinal Santos Medical Center: My Thoughts
I feel it is not exactly right for me to comment one way or another on my stay at the Cardinal Santos Medical Center. It is not as if I have had major surgery at enough different hospitals that my opinion should matter.
That said, I just want to say that I experienced nothing that would make me want to avoid this particular medical institution in the future.
First of all, I am perfectly cognizant that the way a patient will define "efficient" will always be different from the way a hospital will define "efficient." In the end, we have to respect a hospital's efficiency because this is the only way they can be profitable, and it is only with profitability that they can make continuing investments in medical technology. Ultimately, it is what will make us a stronger, healthier society.
In the same vein, I will always try to answer even the most innane question from a medical intern or a nursing trainee. This is part of an educational process that will ensure continuing quality care for those who come after us, most expecially our children and their children.
At the end of day, all I ask from a hospital are three things: 1) competent personnel; 2) a genuine regard for the patient's rights and welfare, as reflected by a functioning sytem; and 3) not to nickel-and-dime us to death.
Under this standard, I'd return to CSMC again and again.
That said, I just want to say that I experienced nothing that would make me want to avoid this particular medical institution in the future.
First of all, I am perfectly cognizant that the way a patient will define "efficient" will always be different from the way a hospital will define "efficient." In the end, we have to respect a hospital's efficiency because this is the only way they can be profitable, and it is only with profitability that they can make continuing investments in medical technology. Ultimately, it is what will make us a stronger, healthier society.
In the same vein, I will always try to answer even the most innane question from a medical intern or a nursing trainee. This is part of an educational process that will ensure continuing quality care for those who come after us, most expecially our children and their children.
At the end of day, all I ask from a hospital are three things: 1) competent personnel; 2) a genuine regard for the patient's rights and welfare, as reflected by a functioning sytem; and 3) not to nickel-and-dime us to death.
Under this standard, I'd return to CSMC again and again.
The Thank You Post
I suspect this blog of mine may have cemented some percolating notions that Kathy married something of a control freak (and yes, maybe she did) "My God this guy, he has rules for everything, dadalaw na lang, may rules pa!")
I will acknowldge that there was a subtle message I was trying to convey, which is this - I feel that many times we, all of us, when we hear of friends or relatives who have medical situations, we would like to be supportive; but we want to be suppportive on our own terms, at our own convenience, and at maximum brownie or pogi points.
The best attitude, I feel, was exemplified this time around by my own mother-in-law, Mrs. Anita Dy Sy, and I would like to take this opportunity to thank her with all my heart. Every morning, as the city slept, she would wake up (I imagine) at around the same time as the roosters and hens to make me some hot breakfast. She would then make the trip to CSMC and leave this hot food with my nurse. What impressed me the most was that I never heard her leave word as to why the food must be consumed. If it went to waste, and if by extension her efforts went to waste, it seemed to be fine with her. But as long as I woke up hungry, the hot food would be there. This is the spirit of humble supportiveness that over and above everyone I wish to thank, I emphasize here.
This is also my message. If it seems a bit preachy or judgmental, I apologize. But I will say this time and again: I will hold myself to same standard.
I will acknowldge that there was a subtle message I was trying to convey, which is this - I feel that many times we, all of us, when we hear of friends or relatives who have medical situations, we would like to be supportive; but we want to be suppportive on our own terms, at our own convenience, and at maximum brownie or pogi points.
The best attitude, I feel, was exemplified this time around by my own mother-in-law, Mrs. Anita Dy Sy, and I would like to take this opportunity to thank her with all my heart. Every morning, as the city slept, she would wake up (I imagine) at around the same time as the roosters and hens to make me some hot breakfast. She would then make the trip to CSMC and leave this hot food with my nurse. What impressed me the most was that I never heard her leave word as to why the food must be consumed. If it went to waste, and if by extension her efforts went to waste, it seemed to be fine with her. But as long as I woke up hungry, the hot food would be there. This is the spirit of humble supportiveness that over and above everyone I wish to thank, I emphasize here.
This is also my message. If it seems a bit preachy or judgmental, I apologize. But I will say this time and again: I will hold myself to same standard.
14 Days
Tomorrow will mark two full weeks, or 14 days, since my surgery. Overall my recovery is going very well and there are thankfully no major issues.
Of course the recovery period has not been without its share of difficulty.
Men are generally quite independent creatures. We take great pride in our wits. Not necessarily our "wit", but our "wits", meaning the ability to think things through, move around, get things done. I am no different. This is why men have a very diffficult time asking for directions. This simple act, usually one of convenience and expediency for women, has a whole different level of significance for men. To do so is tantamount to an act of surrender, an invalidation of an entire skill-set we hold so dear.
So imagine moving from this state of mind to another one wherein you have to wait for someone to help you put your pajamas on. Of course it's a frustrating process.
I'm trying to be patient. I recognize that the more I fight the recovery process, the more I will become a burden to my caregivers. So I'm doing my best to be cooperative and patient. We do want to avoid any accidents that could set back recovery.
Biggest problem remains to be the hiccups. I know it sounds so stupid, but literally, I spend every waking second in horror of the next onslaught. Eventually they will come, uncontrollable and relentless, disrupting all joy from life and recovery.
I reached my breaking point around three days ago. I reached the end of my resolve. The aspired-for stoicism simply shattered by hiccups at 4 in the morning. I screamed at Kathy.
Eventually, the only thing we found that encountered some measure of success controlling the hiccups is a very very cold drink. It must be the type that's cold enough to give one brain freeze, like a milk shake or a very cold smoothie. Then the trick is to drink big gulps and kinda "shock" the hiccups away. Hopefully, this will continue to work and I don't get sick in other ways from all the cold.
Of course the recovery period has not been without its share of difficulty.
Men are generally quite independent creatures. We take great pride in our wits. Not necessarily our "wit", but our "wits", meaning the ability to think things through, move around, get things done. I am no different. This is why men have a very diffficult time asking for directions. This simple act, usually one of convenience and expediency for women, has a whole different level of significance for men. To do so is tantamount to an act of surrender, an invalidation of an entire skill-set we hold so dear.
So imagine moving from this state of mind to another one wherein you have to wait for someone to help you put your pajamas on. Of course it's a frustrating process.
I'm trying to be patient. I recognize that the more I fight the recovery process, the more I will become a burden to my caregivers. So I'm doing my best to be cooperative and patient. We do want to avoid any accidents that could set back recovery.
Biggest problem remains to be the hiccups. I know it sounds so stupid, but literally, I spend every waking second in horror of the next onslaught. Eventually they will come, uncontrollable and relentless, disrupting all joy from life and recovery.
I reached my breaking point around three days ago. I reached the end of my resolve. The aspired-for stoicism simply shattered by hiccups at 4 in the morning. I screamed at Kathy.
Eventually, the only thing we found that encountered some measure of success controlling the hiccups is a very very cold drink. It must be the type that's cold enough to give one brain freeze, like a milk shake or a very cold smoothie. Then the trick is to drink big gulps and kinda "shock" the hiccups away. Hopefully, this will continue to work and I don't get sick in other ways from all the cold.
Desperation Time. Smoothie to the Rescue.
The hiccups returned around 12:30 midnight. Total desperation time. No help in sight, at least five hours until daylight.
Special thanks to my sister Shirley who prepared two glasses of lychee smoothies tonight. The second glass, still in the fridge, has worked for now. Now I try my best to go to sleep and extend this respite.
As for the health implications of gulping down an icy smoothie at midnight and going stright to bed, I agree it's cause for some valid concern. But, desperate needs call for desperate measures.
Special thanks to my sister Shirley who prepared two glasses of lychee smoothies tonight. The second glass, still in the fridge, has worked for now. Now I try my best to go to sleep and extend this respite.
As for the health implications of gulping down an icy smoothie at midnight and going stright to bed, I agree it's cause for some valid concern. But, desperate needs call for desperate measures.
First Check Up
Went to see Dr. Mercado Tuesday afternoon for my first check-up. He was quite pleased with what he saw, I think.
We also received the formal lab report that analysis of the tumor material removed showed it to be non-malignant. While this was never a big issue, it's still a additional relief to receive authoritative comfirmation. One less thing to worry about.
Dr. Mercado then proceeded to take out the staples from my skin incision. I was not looking forward to this but basically, I did't feel a thing. He now wants me to treat the surgical wounds as "normally" as possible.
We also received the formal lab report that analysis of the tumor material removed showed it to be non-malignant. While this was never a big issue, it's still a additional relief to receive authoritative comfirmation. One less thing to worry about.
Dr. Mercado then proceeded to take out the staples from my skin incision. I was not looking forward to this but basically, I did't feel a thing. He now wants me to treat the surgical wounds as "normally" as possible.
Status Update
Basically, I feel good. The hiccups are under control, and the only discernable effects from my surgery as far as I'm concerned is a stiffness of the head muscles, brought on by muscle tissue that were cut during surgery to expose or "reach" the tumor.
My days are still difficult to get through, mostly due to boredom. But this is partly my fault. I believe I have been taking it too easy, and so this total lack of exertion leads to inability to fall asleep at night.
At this point, I'm really quite a bit emberrassed for having called so much attention to my condition. I was just watching this hospital show on the History Channel, and some people have real problems. Really, what I've had to go through, was easy compared to these people. I hope I did not overly dramatize things.
Beginning tomorrow, I have to be more productive. Even if it's just reading a real book, I have to stop wasting all this time...
My days are still difficult to get through, mostly due to boredom. But this is partly my fault. I believe I have been taking it too easy, and so this total lack of exertion leads to inability to fall asleep at night.
At this point, I'm really quite a bit emberrassed for having called so much attention to my condition. I was just watching this hospital show on the History Channel, and some people have real problems. Really, what I've had to go through, was easy compared to these people. I hope I did not overly dramatize things.
Beginning tomorrow, I have to be more productive. Even if it's just reading a real book, I have to stop wasting all this time...
The Latest
I'm well. Showing no ill effects whatsoever from surgery. It's only a matter of recovering from the surgical wounds. So in that sense, by this point am no different from someone who underwent knee surgery or a c-section. In short, anyone who underwent surgery. So while I'm being cautious, I'm also a bit wary of over-babying myself. The latter can be equally counter-productive.
Philosophically am also at a same place. I'm almost ashamed to say that I had brain surgery. "Procedure to remove some excess tissue inside the ear" seems more apt, more correct. But I am also wary of trivializing the very real blessing that the operation went so well.
I'm blogging from a new Asus laptop with an ATOM processor. I dragged Kathy to SM yesterday to search for one yesterday. ATOM processors are made by Intel as part of an industry mission to make laptops, and therefore computing power, more accessible. I think the end goal is to get laptops out for less than $100. Things are still very far, since the current price point in the Philippines is around $450. At that price the whole thing makes very little sense since "regular" laptops with more established and superior processors start at $500, so I think they have to get things down to $250 or at least around P15,000 before the whole thing of having a "dumber" processor begins to make sense.
I plunked down P21,000 (6 installments of P3,500) for mine and my excuses to myself for the expenditure is that this thing is half the weight of my Lenovo (less of a strain on my surgical wounds. ha!) and therefore more mobile. Battery life will be key, because what's the use of mobility if its dead? This Asus promises 9.5 hours and backs it up with a 1-year warranty including the battery. As to whether or not it actually delivers on the 9.5 hours will be clearer a few months down the road.
Philosophically am also at a same place. I'm almost ashamed to say that I had brain surgery. "Procedure to remove some excess tissue inside the ear" seems more apt, more correct. But I am also wary of trivializing the very real blessing that the operation went so well.
I'm blogging from a new Asus laptop with an ATOM processor. I dragged Kathy to SM yesterday to search for one yesterday. ATOM processors are made by Intel as part of an industry mission to make laptops, and therefore computing power, more accessible. I think the end goal is to get laptops out for less than $100. Things are still very far, since the current price point in the Philippines is around $450. At that price the whole thing makes very little sense since "regular" laptops with more established and superior processors start at $500, so I think they have to get things down to $250 or at least around P15,000 before the whole thing of having a "dumber" processor begins to make sense.
I plunked down P21,000 (6 installments of P3,500) for mine and my excuses to myself for the expenditure is that this thing is half the weight of my Lenovo (less of a strain on my surgical wounds. ha!) and therefore more mobile. Battery life will be key, because what's the use of mobility if its dead? This Asus promises 9.5 hours and backs it up with a 1-year warranty including the battery. As to whether or not it actually delivers on the 9.5 hours will be clearer a few months down the road.
30 DAYS
Today is my 30th day post-op. It's an important milestone for us Chinese, a day when one who underwent surgery is supposed to have completed the most critical period of his recovery - the first month afterwards.
I do feel good. But ironically I've experienced more headaches this past week than during the days immediately following my surgery. I think this is because we started weaning myself off the steroids beginning my second check up roughly nine days ago. So the swelling is probably less artificially controlled and hence the headaches. I feel a general ache whenever my head hits the pillow but it disappears once I stand up so in that sense it's actually very manageable.
Some other things I've noticed:
1) My neck tires a bit more easily. This is to be expected I guess. My neck muscles were cut during surgery and then sewn back together so structurally they are now weaker. Like a concrete post that cracked during an earthquake, no matter how much you try to patch the concrete it probably ends up less strong afterwards. I understand they're fixing the Bay Bridge in the San Francisco Bay Area these few days, and it's probably exactly the same principle; no matter how good of a job they do, I doubt if it'll end up as strong and as sound as it was before it was damaged.
2) My right arm seems weaker. To be more accurate, my right shoulder seems weaker. I am less able to lift and extend my right arm with speed and confidence. I have no idea if this is related to the surgery or just from all the non-activity; but it does provide a convenient excuse for all the jumpers I will miss in the future.
This said, I do wish to emphasize that my surgery went remarkably well. The chap below, John Kelly, had surgery to remove a 4cm AN and ended up like this:
You can read his story here or his blog here. Know this: it is NOT just a matter of vanity, when you lose control of your facial muscles, it leads to very real health issues. You cannot voluntarily blink, so your eye is open even when you're asleep. The eyeball begins to degenerate, and you have to resort to taping the eye shut. Read John's November 25 entry in the Guardian to have a better idea.
I hope I can be 100% "normal" soon. Last Tuesday we took Steffi to Trinoma upon her request to ride the "yellow car". It's actually a two-seat mini-simulator. Like the one that used to be at the Shangrila Mall and like the RIALTO at Enchanted Kingdom, except instead of an entire theater sized thing it's in the form of an amusement center ride and can fit only two people. Makes sense, less overhead, less capacity costs. Anyway, I do not know if it was just my imagination, but when we were at the mall I thought I saw in Steffi's 4-year-old eyes some confusion: "This papa of mine is the biggest, strongest man I've known since I was born, the problem solver, the fixer of all broken toys. Why is he now the weakest, the slowest?" I do not want her to get used to the thought that her dad is handicapped.
I do feel good. But ironically I've experienced more headaches this past week than during the days immediately following my surgery. I think this is because we started weaning myself off the steroids beginning my second check up roughly nine days ago. So the swelling is probably less artificially controlled and hence the headaches. I feel a general ache whenever my head hits the pillow but it disappears once I stand up so in that sense it's actually very manageable.
Some other things I've noticed:
1) My neck tires a bit more easily. This is to be expected I guess. My neck muscles were cut during surgery and then sewn back together so structurally they are now weaker. Like a concrete post that cracked during an earthquake, no matter how much you try to patch the concrete it probably ends up less strong afterwards. I understand they're fixing the Bay Bridge in the San Francisco Bay Area these few days, and it's probably exactly the same principle; no matter how good of a job they do, I doubt if it'll end up as strong and as sound as it was before it was damaged.
2) My right arm seems weaker. To be more accurate, my right shoulder seems weaker. I am less able to lift and extend my right arm with speed and confidence. I have no idea if this is related to the surgery or just from all the non-activity; but it does provide a convenient excuse for all the jumpers I will miss in the future.
This said, I do wish to emphasize that my surgery went remarkably well. The chap below, John Kelly, had surgery to remove a 4cm AN and ended up like this:
You can read his story here or his blog here. Know this: it is NOT just a matter of vanity, when you lose control of your facial muscles, it leads to very real health issues. You cannot voluntarily blink, so your eye is open even when you're asleep. The eyeball begins to degenerate, and you have to resort to taping the eye shut. Read John's November 25 entry in the Guardian to have a better idea.I hope I can be 100% "normal" soon. Last Tuesday we took Steffi to Trinoma upon her request to ride the "yellow car". It's actually a two-seat mini-simulator. Like the one that used to be at the Shangrila Mall and like the RIALTO at Enchanted Kingdom, except instead of an entire theater sized thing it's in the form of an amusement center ride and can fit only two people. Makes sense, less overhead, less capacity costs. Anyway, I do not know if it was just my imagination, but when we were at the mall I thought I saw in Steffi's 4-year-old eyes some confusion: "This papa of mine is the biggest, strongest man I've known since I was born, the problem solver, the fixer of all broken toys. Why is he now the weakest, the slowest?" I do not want her to get used to the thought that her dad is handicapped.
The Most Expensive Five Hours of My Life
Next Wednesday, November 25, 2009, I am scheduled to undergo Gamma Knife RadioSurgery to "kill" or "deactivate" what remains of my Acoustic Neuroma.
First things first, just to be clear, there is actually no knife. The word "knife" is in this tool's name, I think, to present the idea that the gamma rays will accomplish what used to take a real knife to do. Basically it boils down to a machine shooting some (invisible) rays into me. It is called RadioSURGERY only to differentiate it from RadioTHERAPY. Radiosurgery uses a fairly large dose of radiation to zap the tumor in one sitting, while radiotherapy uses much smaller doses to accomplish the same thing over multiple sessions. At any rate, no cutting and no bleeding takes place.
That said, it still sounds like a fairly uncomfortable experience. Ironically, probably more uncomfortable than the surgery. In the surgery phase I felt no pain DURING (since I was asleep) but there was discomfort AFTER (during recovery). With this procedure it sounds like there will be discomfort DURING but none AFTER. I should be back to normal the very next day. Here's how it's supposed to go: (Note to Alvin and Alan - this is where you stop reading!)
First they take this metal frame and literally screw it onto my head (probably a little bleeding there, but nothing major). This frame will ensure that when they need my head absolutely immobile, it will be. Then they take this gadget taken from the pyramids of Egypt, left behind by aliens millions of years ago, and stick it onto my brain through my right nostril. Ok, joke lang that last statement. :-) With the frame attached to my head, they then take one final MRI and use the scans to plot the position of the tumor relative to my head and the frame so they can input these coordinates into the Gamma Knife machine. This tells the machine where to "shoot" and how large of a "bullet" to use. All this will take about five hours, and with the price tag for this procedure, this just about makes next Wednesday morning the most expensive five hours of my life..
First things first, just to be clear, there is actually no knife. The word "knife" is in this tool's name, I think, to present the idea that the gamma rays will accomplish what used to take a real knife to do. Basically it boils down to a machine shooting some (invisible) rays into me. It is called RadioSURGERY only to differentiate it from RadioTHERAPY. Radiosurgery uses a fairly large dose of radiation to zap the tumor in one sitting, while radiotherapy uses much smaller doses to accomplish the same thing over multiple sessions. At any rate, no cutting and no bleeding takes place.
That said, it still sounds like a fairly uncomfortable experience. Ironically, probably more uncomfortable than the surgery. In the surgery phase I felt no pain DURING (since I was asleep) but there was discomfort AFTER (during recovery). With this procedure it sounds like there will be discomfort DURING but none AFTER. I should be back to normal the very next day. Here's how it's supposed to go: (Note to Alvin and Alan - this is where you stop reading!)
First they take this metal frame and literally screw it onto my head (probably a little bleeding there, but nothing major). This frame will ensure that when they need my head absolutely immobile, it will be. Then they take this gadget taken from the pyramids of Egypt, left behind by aliens millions of years ago, and stick it onto my brain through my right nostril. Ok, joke lang that last statement. :-) With the frame attached to my head, they then take one final MRI and use the scans to plot the position of the tumor relative to my head and the frame so they can input these coordinates into the Gamma Knife machine. This tells the machine where to "shoot" and how large of a "bullet" to use. All this will take about five hours, and with the price tag for this procedure, this just about makes next Wednesday morning the most expensive five hours of my life..
Some Final Concerns
Last Saturday, November 14, about 90 days after my surgery I had my first post-op MRI. Here is the shot most comparable to the initial MRI which I earlier posted on the upper right hand portion of this blog:
If you look closely enough you can still see the tumor but it is now much lighter in color.
When I first read the report accompanying the MRI, my heart sank. The report stated that the remnant was a 3.5 cm tumor measuring 3.5 x 2.5 x 3.1. While this was significantly smaller then the pre-op size (a 4.1 cm tumor measuring 3.8 x 4.1 x 3.7), a 3.5cm tumor would still be larger than the theoretical maximum of 3 cm which would make it "gamma knife-able".
A visit to Dr. Mercado provided some comfort. He explained that since the tumor was now irregularly shaped (no longer round or spherical), the normal convention of using the longest dimension to describe a tumor was no longer applicable. In short, this is not really a 3.5cm tumor. When we have a computer compute the actual volume of this irregular shape it would be smaller than 3.5 cm., he said.
Ok, that made sense. In their original and untouched form, tumors tend to be spherical, which would mean they measure roughly the same in all directions:
(note my initial measurements of 3.8 x 4.1 x 3.7) No matter which direction we roll this sphere, we would get roughly the same measurement so it is reasonable to use the convention of using one side's measurement as the tumor size.
Once we cut away a portion of the tumor via surgery -
then things change because the tumor now becomes irregularly shaped or non-symmetrical. While one side might still be 4cm in length,
we cannot reasonably refer to this as a 4cm tumor because it is undeniably smaller than the original one.
So like I said, the consultation with Dr. Mercado brought some measure of comfort. So I made some agreeable noises, put on a reasonably happy face and acted like everything was great. As Amarillo "Slim" Preston once said: "There is no need for me to be a hardship on my family the times I do lose."
Still, I had three worries -
1) While I was convinced that the volume of the remaining tumor was less than 3.5cm, when I looked at the measurements 3.5 x 2.5 x 3.1 I also realized that the actual volume would definitely be greater than 2.5 cm, which would make it very close to the theoretical 3cm maximum. How do I know this? Well, how do we find the volume of an irregularly shaped tumor? One way would be to make it a spherical one so that we could use the original measurement conventions. In making it spherical we make it symmetrical. To make it symmetrical we make the longer sides shorter and the shorter sides longer until all three sides are equal. As the shortest side, the 2.5cm side would inevitably become longer, and that's how I knew that the actual volume could not be smaller than 2.5cm. It would be somewhere between 2.5cm and 3.5cm, maybe 3cm, dangerously close to the theoretical maximum. Using only a calculator we can even figure out the length of an "equalized" side by adding up the three dimensions and dividing by three. The result = 3.0333cm!! Right on the maximum! Now I was really starting to worry.
I went so far as to test my theory using clay. I cut out a piece of clay which would measure 3.5cm on 1 side
2.5cm on another
and 3.1cm on the third and final side
Then I rolled it into a sphere and measured that sphere
I don't know if that's 3.033 but it's close enough for me. So this was my obvious worry: if we're on the maximum "gamma knife-able" size would this mean that there would be a significant chance of failure?
2) Even if we were okay on volume, is it okay for one side to be more than 3cm? This is a real issue. For instance, airlines not only put a limit on the weight of our baggage but also on the dimensions, because if one dimension is too long, it might not fit in the baggage hold. As an exaggerated example, I could not bring onto a plane a very light but long stick that is longer than the plane. I might be ok weight-wise but it could never fit into the plane. Fortunately the answer to this second concern is more easily and definitively determined.
3) My final concern was that Dr. Mercado might not give me straight answers to concerns 1 and 2. Don't get me wrong, I am not questioning his honesty and integrity, but I worry that since a second surgery on the same spot to further reduce the tumor is not advisable, then he might spare me any bad news on the two concerns if there were no definite way to "fix" any issues that might exist. Still, I went back to see him today one final time, wanting to ask him my nagging questions in person.
I came out of his clinic an infinitely happier man. I asked him two series of questions:
Q: Why does the tumor appear much lighter on the latest MRI?
A: (after explanations about blood supply and contrast dyes) Basically, there are much less living tumor cells within the tumor. The tumor is less dense.
Q: If it is less dense, given two tumors of identical sizes, one never-been-touched and the other already debulked via surgery, would it be fair to say that it will take less to kill the latter even though it is of the same volume as the former? Since it is less dense after having been "debulked".
A: That is absolutely correct.
This exchange pleased me no end, because it gives me some assurance that even if the volume of my remaining tumor is indeed right on the maximum of 3 cm, chances are very good that the radiosurgery will be successful because the tumor is now already easier to kill. Furthermore, even at 3cm, they will probably not even have to use maximum radiation dose. A "fresh" or "untouched" 3cm tumor is not the same as a 3cm tumor that resulted from debulking a larger tumor. Going back to our orange peel analogy, the peel left behind might still be 3cm in volume, but it is just peel, not strong and healthy orange.
Q: The 3cm theoretical maximum refers to total volume and doesn't mean that all sides must be smaller than 3cm, right?
A: Yes. We can tailor the beams to any size. The concern is that if the total volume is too large, then the required dose of radiation will be too high and will spill over to the healthy neural structures.
Another good answer!
Finally, I think Dr. Mercado saw through my questions to my actual concerns because he volunteered this statement: "With all credibility, honesty, and sincerity I say to you that your tumor is now ideal for gamma knife."
Here we go...
If you look closely enough you can still see the tumor but it is now much lighter in color.
When I first read the report accompanying the MRI, my heart sank. The report stated that the remnant was a 3.5 cm tumor measuring 3.5 x 2.5 x 3.1. While this was significantly smaller then the pre-op size (a 4.1 cm tumor measuring 3.8 x 4.1 x 3.7), a 3.5cm tumor would still be larger than the theoretical maximum of 3 cm which would make it "gamma knife-able".
A visit to Dr. Mercado provided some comfort. He explained that since the tumor was now irregularly shaped (no longer round or spherical), the normal convention of using the longest dimension to describe a tumor was no longer applicable. In short, this is not really a 3.5cm tumor. When we have a computer compute the actual volume of this irregular shape it would be smaller than 3.5 cm., he said.
Ok, that made sense. In their original and untouched form, tumors tend to be spherical, which would mean they measure roughly the same in all directions:
(note my initial measurements of 3.8 x 4.1 x 3.7) No matter which direction we roll this sphere, we would get roughly the same measurement so it is reasonable to use the convention of using one side's measurement as the tumor size.Once we cut away a portion of the tumor via surgery -
then things change because the tumor now becomes irregularly shaped or non-symmetrical. While one side might still be 4cm in length,
we cannot reasonably refer to this as a 4cm tumor because it is undeniably smaller than the original one.So like I said, the consultation with Dr. Mercado brought some measure of comfort. So I made some agreeable noises, put on a reasonably happy face and acted like everything was great. As Amarillo "Slim" Preston once said: "There is no need for me to be a hardship on my family the times I do lose."
Still, I had three worries -
1) While I was convinced that the volume of the remaining tumor was less than 3.5cm, when I looked at the measurements 3.5 x 2.5 x 3.1 I also realized that the actual volume would definitely be greater than 2.5 cm, which would make it very close to the theoretical 3cm maximum. How do I know this? Well, how do we find the volume of an irregularly shaped tumor? One way would be to make it a spherical one so that we could use the original measurement conventions. In making it spherical we make it symmetrical. To make it symmetrical we make the longer sides shorter and the shorter sides longer until all three sides are equal. As the shortest side, the 2.5cm side would inevitably become longer, and that's how I knew that the actual volume could not be smaller than 2.5cm. It would be somewhere between 2.5cm and 3.5cm, maybe 3cm, dangerously close to the theoretical maximum. Using only a calculator we can even figure out the length of an "equalized" side by adding up the three dimensions and dividing by three. The result = 3.0333cm!! Right on the maximum! Now I was really starting to worry.
I went so far as to test my theory using clay. I cut out a piece of clay which would measure 3.5cm on 1 side
2.5cm on another
and 3.1cm on the third and final side
Then I rolled it into a sphere and measured that sphere
I don't know if that's 3.033 but it's close enough for me. So this was my obvious worry: if we're on the maximum "gamma knife-able" size would this mean that there would be a significant chance of failure?
2) Even if we were okay on volume, is it okay for one side to be more than 3cm? This is a real issue. For instance, airlines not only put a limit on the weight of our baggage but also on the dimensions, because if one dimension is too long, it might not fit in the baggage hold. As an exaggerated example, I could not bring onto a plane a very light but long stick that is longer than the plane. I might be ok weight-wise but it could never fit into the plane. Fortunately the answer to this second concern is more easily and definitively determined.
3) My final concern was that Dr. Mercado might not give me straight answers to concerns 1 and 2. Don't get me wrong, I am not questioning his honesty and integrity, but I worry that since a second surgery on the same spot to further reduce the tumor is not advisable, then he might spare me any bad news on the two concerns if there were no definite way to "fix" any issues that might exist. Still, I went back to see him today one final time, wanting to ask him my nagging questions in person.
I came out of his clinic an infinitely happier man. I asked him two series of questions:
Q: Why does the tumor appear much lighter on the latest MRI?
A: (after explanations about blood supply and contrast dyes) Basically, there are much less living tumor cells within the tumor. The tumor is less dense.
Q: If it is less dense, given two tumors of identical sizes, one never-been-touched and the other already debulked via surgery, would it be fair to say that it will take less to kill the latter even though it is of the same volume as the former? Since it is less dense after having been "debulked".
A: That is absolutely correct.
This exchange pleased me no end, because it gives me some assurance that even if the volume of my remaining tumor is indeed right on the maximum of 3 cm, chances are very good that the radiosurgery will be successful because the tumor is now already easier to kill. Furthermore, even at 3cm, they will probably not even have to use maximum radiation dose. A "fresh" or "untouched" 3cm tumor is not the same as a 3cm tumor that resulted from debulking a larger tumor. Going back to our orange peel analogy, the peel left behind might still be 3cm in volume, but it is just peel, not strong and healthy orange.
Q: The 3cm theoretical maximum refers to total volume and doesn't mean that all sides must be smaller than 3cm, right?
A: Yes. We can tailor the beams to any size. The concern is that if the total volume is too large, then the required dose of radiation will be too high and will spill over to the healthy neural structures.
Another good answer!
Finally, I think Dr. Mercado saw through my questions to my actual concerns because he volunteered this statement: "With all credibility, honesty, and sincerity I say to you that your tumor is now ideal for gamma knife."
Here we go...
Welcome the Pain
How does one psyche oneself up for the experience of getting his skull "clamped" by two screws at the temple? I'm trying to think back to a story I read when I was a young boy, about training that Indian warriors go through. They are made to run through the snow naked. To fight the cold they are told to welcome it. "Welcome the cold... It is your brother..."
"Welcome the pain..."
"Welcome the pain..."
"Welcome the pain..."
"Welcome the pain..."
Gamma Knifed
Last Wednesday, we went bright and early to The Philippine Gamma Knife Center located within the grounds of Cardinal Santos Medical Center. By around 7:30 they were attaching the frame to my head. While I wouldn't call the experience particularly bad, I must say I've done more enjoyable things in my life. Four screws, two at your temples and two near the base of your skull at the back (the fourth seemingly perilously close to my surgical "spot"), are used to attach an aluminum frame to your head. While uncomfortable, this frame is vital for accuracy. They "map" the location of the tumor relative to this frame, then attach the frame (with your head of course) to the machine, which I shall henceforth refer to as the "ray gun." This is how the ray gun knows the exact position to shoot its rays. In the days before Gamma Knife I understand that radiation consisted of shotgun approaches wherein rays are shot less discriminately into the general area of the tumor, causing harm to healthy structures in the process. Although they try not to needlessly worry us patients, apparently some people faint during this screwing, but I guess ignorance is bliss, because this Indian warrior made it through just fine.
Afterwards, frame and all, they took me for an MRI. This final scan would form the basis of the map with which the plan would be designed via computer. A typical plan goes something like this (in layman's terms):
with frame (and therefore head) in this position, turn rays on for 3 min.
Next, with frame (and therefore head) in this other position, turn rays on for 1 min.
and so on and so forth...
My plan called for 15 positions! Well at least we got our money's worth. :-) And how are these position changes accomplished? Well, the doctors, led by Dr. Mercado and Dr. Theodore "Dr. Ted" Vesagas (I think he's the technology hotshot over there) come in, literally unscrew you and screw you onto a new position. This is where I think knowledge led to the process being more uncomfortable than it had to be. With every turn of the screw, I could visualize the forces and stresses transferring from the screws onto the frame, and onto the four screws clamping my skull, so I was particularly attuned to the little neural twitches and pains here and there. If I had just gone in blissfully unaware, maybe, just maybe I would have felt even less discomfort. Maybe that's why Indian warriors-in-training have no access to the internet, less pain to welcome.
All in all, it was almost 2pm in the afternoon by the time we got out of CSMC. Not a torture session, but not exactly a party either.
Afterwards, frame and all, they took me for an MRI. This final scan would form the basis of the map with which the plan would be designed via computer. A typical plan goes something like this (in layman's terms):
with frame (and therefore head) in this position, turn rays on for 3 min.
Next, with frame (and therefore head) in this other position, turn rays on for 1 min.
and so on and so forth...
My plan called for 15 positions! Well at least we got our money's worth. :-) And how are these position changes accomplished? Well, the doctors, led by Dr. Mercado and Dr. Theodore "Dr. Ted" Vesagas (I think he's the technology hotshot over there) come in, literally unscrew you and screw you onto a new position. This is where I think knowledge led to the process being more uncomfortable than it had to be. With every turn of the screw, I could visualize the forces and stresses transferring from the screws onto the frame, and onto the four screws clamping my skull, so I was particularly attuned to the little neural twitches and pains here and there. If I had just gone in blissfully unaware, maybe, just maybe I would have felt even less discomfort. Maybe that's why Indian warriors-in-training have no access to the internet, less pain to welcome.
All in all, it was almost 2pm in the afternoon by the time we got out of CSMC. Not a torture session, but not exactly a party either.
The Aftermath
I was told that I would be back to normal the very next day, but the past three days have been very difficult. I am not saying that I was misled, but for some reason or another, my recovery has been much more uncomfortable than "normal".
I remember a story I read when I was a young boy. I cannot even remember the title now, but it was about spies and espionage, and the one thing I do remember was a part where they were talking about drugs used to break down captured spies and agents. The way one drug was described: "after it is injected, you will want to stand up when you are sitting down and you will want to sit down when you are standing up." That, is exactly how I have been feeling the past three days. Exactly.
First, there was terrible nausea and indigestion. My reasonable assessment is that this was probably not caused entirely by the gamma knife. The attack of indigestion was probably triggered by the fact that I had to fast for the procedure and had gone with neither food nor water from 10pm Tuesday night to 2pm Wednesday afternoon. I have a poor gastro-intestinal constitution (a confluence of hyperacidity and an easily-stressed disposition) and doctors cannot seem to decide if I have GERD or peptic ulcers but anyway this so belongs in another blog entirely. :-) Some additional nausea from the gamma knife simply added fuel to the fire.
By today, Saturday, the nausea was better but my head throbbed the whole day, especially near my surgical wound where the fourth screw was inserted. I think it's the bone in that area turning arthritic. At least that's what I hope it is. I don't what to think of the other possibilities.
Well, hopefully tomorrow I'll feel even better. Is the tumor dead now? Well, we're pretty sure it's not. But it's supposed to be dying, and we'll get some indications within 6 months and know for sure after a year.
I remember a story I read when I was a young boy. I cannot even remember the title now, but it was about spies and espionage, and the one thing I do remember was a part where they were talking about drugs used to break down captured spies and agents. The way one drug was described: "after it is injected, you will want to stand up when you are sitting down and you will want to sit down when you are standing up." That, is exactly how I have been feeling the past three days. Exactly.
First, there was terrible nausea and indigestion. My reasonable assessment is that this was probably not caused entirely by the gamma knife. The attack of indigestion was probably triggered by the fact that I had to fast for the procedure and had gone with neither food nor water from 10pm Tuesday night to 2pm Wednesday afternoon. I have a poor gastro-intestinal constitution (a confluence of hyperacidity and an easily-stressed disposition) and doctors cannot seem to decide if I have GERD or peptic ulcers but anyway this so belongs in another blog entirely. :-) Some additional nausea from the gamma knife simply added fuel to the fire.
By today, Saturday, the nausea was better but my head throbbed the whole day, especially near my surgical wound where the fourth screw was inserted. I think it's the bone in that area turning arthritic. At least that's what I hope it is. I don't what to think of the other possibilities.
Well, hopefully tomorrow I'll feel even better. Is the tumor dead now? Well, we're pretty sure it's not. But it's supposed to be dying, and we'll get some indications within 6 months and know for sure after a year.
Christmas 2009
It's been a year of upheaval obviously, but Christmas 2009 finds me in a thankful mood and counting my blessings. The following picture says it all:
There are a number of small problems that remain, but hey, the picture says it all.
Hearing in my left ear is now back down to 10% compared to my right side on the "self-perception scale." Before surgery, I put it at 10% and after surgery had it up to 40%, then after gamma knife I put it at 10% again. This is to be expected. As the tumor begins to "die" from having been shot by the gamma ray gun, it will first bloat or swell up. (Imagine a goon who has been beaten up by Fernando Poe Jr., before the goon dies he will be in the ICU all swollen up right?) So there is indeed the possibility that there will be a worsening of the acoustic neuroma symptoms for about six months. When we're out around people these days Kathy stays on my left side and slaps me on the arm when someone has spoken to me and it's obvious that I'm unaware. (Of course there are times when I've chosen to be unaware.) Small problems like this, mini-handicaps I call them.
The balance issues are back with a vengeance. "Dizziness" is not the correct term, since I feel perfectly normal when I'm sitting down. Driving is not even a problem. But when I walk, I find myself veering off to one side much like a drunk person, and I have to constantly catch myself and pull myself back. There's also the tendency to "tip over" when I put my weight on one leg, like when I'm putting my pants on. So I'm constantly making small adjustments and righting myself.
My saliva seems to taste "sour" and nothing tastes the same. Not even the roast goose we received as a present last week. Some minor nausea and "queasiness" has returned.
My head starts to ache the moment I lie down and hurts progressively more (imagine trying to get to sleep at night). I am not able to stay asleep for more than 3-4 hours because the pain wakes me up. After I wake up, it really feels like I have a bunch of elves playing drums inside my head. Strangely enough the pain disappears some time after I stand up, so at least it is not debilitating during the day.
Most, if not all of these are "common" symptoms of untreated acoustic neuroma. And like I said, it all makes sense because my tumor is now getting larger and behaving like an untreated AN. The important difference is that it is getting larger in the process of dying; and not because it is alive and well. Therefore, all these should disappear over the next six months.
A joyous Christmas to one and all. I have good days and bad days; but the picture says it all..
There are a number of small problems that remain, but hey, the picture says it all.
Hearing in my left ear is now back down to 10% compared to my right side on the "self-perception scale." Before surgery, I put it at 10% and after surgery had it up to 40%, then after gamma knife I put it at 10% again. This is to be expected. As the tumor begins to "die" from having been shot by the gamma ray gun, it will first bloat or swell up. (Imagine a goon who has been beaten up by Fernando Poe Jr., before the goon dies he will be in the ICU all swollen up right?) So there is indeed the possibility that there will be a worsening of the acoustic neuroma symptoms for about six months. When we're out around people these days Kathy stays on my left side and slaps me on the arm when someone has spoken to me and it's obvious that I'm unaware. (Of course there are times when I've chosen to be unaware.) Small problems like this, mini-handicaps I call them.
The balance issues are back with a vengeance. "Dizziness" is not the correct term, since I feel perfectly normal when I'm sitting down. Driving is not even a problem. But when I walk, I find myself veering off to one side much like a drunk person, and I have to constantly catch myself and pull myself back. There's also the tendency to "tip over" when I put my weight on one leg, like when I'm putting my pants on. So I'm constantly making small adjustments and righting myself.
My saliva seems to taste "sour" and nothing tastes the same. Not even the roast goose we received as a present last week. Some minor nausea and "queasiness" has returned.
My head starts to ache the moment I lie down and hurts progressively more (imagine trying to get to sleep at night). I am not able to stay asleep for more than 3-4 hours because the pain wakes me up. After I wake up, it really feels like I have a bunch of elves playing drums inside my head. Strangely enough the pain disappears some time after I stand up, so at least it is not debilitating during the day.
Most, if not all of these are "common" symptoms of untreated acoustic neuroma. And like I said, it all makes sense because my tumor is now getting larger and behaving like an untreated AN. The important difference is that it is getting larger in the process of dying; and not because it is alive and well. Therefore, all these should disappear over the next six months.
A joyous Christmas to one and all. I have good days and bad days; but the picture says it all..
A Nauseous New Year
The first week of the new year has been an uncomfortable one. I'll recapitulate my symptoms, described in the previous post, one more time here:
1) Decreased hearing in my affected ear. After surgery it had improved markedly, but now, after gamma knife, it seems to have deteriorated to a point where it is worse than it was before surgery.
2) Dis-equilibrium, or a loss of balance. Not really dizziness, but walking like a drunk person. The best way I have heard this described is a "loss of sure-footedness". Last Monday I joined my mom and an aunt to see a screening of "Mano Po 6". Inside the darkened theater, I really thought I might not make it to my seat. Made me promise myself never to grow impatient when walking behind any slow-moving person (although I still reserve my right to overtake them. If I can, that is...)
3) Nausea. This one causes the most misery, and is probably directly related to #2. With dis-equilibrium, I basically spent the entire day in a state similar to standing on a rowboat rocking in the river, thus resulting in significant nausea.
4) More jiggly eyeballs. Now unable to read a book inside a moving vehicle. All my life, I have been able to read inside cars, boats, trains, any moving vehicle. Now I have a very difficult time doing so.
5) The midnight sleep-shattering headaches are gone (thankfully), but I still wake up in the mornings to a mild, vague headache which disappears soon after I stand up.
At first I had very little apprehension over these symptoms, because it all made sense. If the tumor is swelling (remember the goon who got beat up by FPJ?) , then it is getting temporarily larger and causing the same "irritations" to the neural structures as it was when it was first growing. So it makes sense that I will have to go through a period of experiencing, once again, the symptoms of untreated ANs. It even makes sense that these symptoms will be more pronounced now, since the tumor is probably swelling up faster than it was growing naturally back when it was alive and well. For instance, if in the month following gamma knife my tumor swelled by 10%, then this would mean that my 3cm tumor "grew" by about 3mm in the past month. This is equivalent to a full year's growth of a "healthy" or "evil" AN.
Still, yesterday I was feeling so miserable that I googled "stomach cancer" and "hydrocephalus". Crap. Same symptoms for hydrocephalus. Panic mode.
Went to see Dr. Mercado today. Got assurance that there was no apparent hydrocephalus causing these symptoms. And it was almost a sure thing that these are being caused by a swelling tumor. The scientific term is "pseudo-progression" meaning that the tumor is behaving like it's growing but it's actually just swelling up getting ready to die. In my honest opinion, as with many medical terms, pseudo-progression is a bit of a misnomer, because there is nothing "pseudo" about the tumor getting bigger. It is really getting bigger and causing very very real symptoms. But I guess maybe the word "progression" is meant to convey "living growth". This is not "living growth" but "swelling at the gates of death".
To regulate the swelling and manage the symptoms, I was prescribed a week of oral steroids, and weekly check-ups, just to be sure.
Overall, this is all fairly good news. We're on track. Dr. Mercado even pointed out that these pronounced symptoms actually hide a piece of good news, that the tumor was truly hit by the gamma knife. Napuruhan, as FPJ might have put it.
Still, this week of musing did leave me with one sobering thought: the tumor does not immediately die after being shot by the gamma knife. It will fully die only after 12 months or so. Using the same logic, it will also take more than 12 months or so before we are fully 100% sure that the gamma knife did not hit anything else. Anything healthy I mean, like the cranial nerves, the cerebellum, the brain stem, etc. This will be long after we all think I am fully recovered. Pray for me.
1) Decreased hearing in my affected ear. After surgery it had improved markedly, but now, after gamma knife, it seems to have deteriorated to a point where it is worse than it was before surgery.
2) Dis-equilibrium, or a loss of balance. Not really dizziness, but walking like a drunk person. The best way I have heard this described is a "loss of sure-footedness". Last Monday I joined my mom and an aunt to see a screening of "Mano Po 6". Inside the darkened theater, I really thought I might not make it to my seat. Made me promise myself never to grow impatient when walking behind any slow-moving person (although I still reserve my right to overtake them. If I can, that is...)
3) Nausea. This one causes the most misery, and is probably directly related to #2. With dis-equilibrium, I basically spent the entire day in a state similar to standing on a rowboat rocking in the river, thus resulting in significant nausea.
4) More jiggly eyeballs. Now unable to read a book inside a moving vehicle. All my life, I have been able to read inside cars, boats, trains, any moving vehicle. Now I have a very difficult time doing so.
5) The midnight sleep-shattering headaches are gone (thankfully), but I still wake up in the mornings to a mild, vague headache which disappears soon after I stand up.
At first I had very little apprehension over these symptoms, because it all made sense. If the tumor is swelling (remember the goon who got beat up by FPJ?) , then it is getting temporarily larger and causing the same "irritations" to the neural structures as it was when it was first growing. So it makes sense that I will have to go through a period of experiencing, once again, the symptoms of untreated ANs. It even makes sense that these symptoms will be more pronounced now, since the tumor is probably swelling up faster than it was growing naturally back when it was alive and well. For instance, if in the month following gamma knife my tumor swelled by 10%, then this would mean that my 3cm tumor "grew" by about 3mm in the past month. This is equivalent to a full year's growth of a "healthy" or "evil" AN.
Still, yesterday I was feeling so miserable that I googled "stomach cancer" and "hydrocephalus". Crap. Same symptoms for hydrocephalus. Panic mode.
Went to see Dr. Mercado today. Got assurance that there was no apparent hydrocephalus causing these symptoms. And it was almost a sure thing that these are being caused by a swelling tumor. The scientific term is "pseudo-progression" meaning that the tumor is behaving like it's growing but it's actually just swelling up getting ready to die. In my honest opinion, as with many medical terms, pseudo-progression is a bit of a misnomer, because there is nothing "pseudo" about the tumor getting bigger. It is really getting bigger and causing very very real symptoms. But I guess maybe the word "progression" is meant to convey "living growth". This is not "living growth" but "swelling at the gates of death".
To regulate the swelling and manage the symptoms, I was prescribed a week of oral steroids, and weekly check-ups, just to be sure.
Overall, this is all fairly good news. We're on track. Dr. Mercado even pointed out that these pronounced symptoms actually hide a piece of good news, that the tumor was truly hit by the gamma knife. Napuruhan, as FPJ might have put it.
Still, this week of musing did leave me with one sobering thought: the tumor does not immediately die after being shot by the gamma knife. It will fully die only after 12 months or so. Using the same logic, it will also take more than 12 months or so before we are fully 100% sure that the gamma knife did not hit anything else. Anything healthy I mean, like the cranial nerves, the cerebellum, the brain stem, etc. This will be long after we all think I am fully recovered. Pray for me.
JawBones
I'm sorry but it's Steffi-brag time once more. This is her latest creation using JawBones, one of a number of Lego-inspired building sets of this day and age (given to her by her sa-ko and sa-ko-tiu):
Ok, I admit we can't really tell just exactly what it is. But you have to admit it kinda looks like a vehicle of some sort, a robotic one at that. The more important point is that she did this entirely on her own with no help whatsoever. It's not exactly a very simple toy. There are 16 different basic parts -
- and 12 basic connections -
In short, her forty-year old dad plays with it a lot. :-) And Steffi's not even five yet!
What makes me really happy when I see Steffi's creations is that 1) it shows a good basic mechanical sense, and 2) an intellectual curiosity to figure out how things work.
But fatherhood is never easy. Every joy, it seems, can have an accompanying worry.
Good mechanical sense today, huwag naman sana ganito 12 years from now:
Ok, I admit we can't really tell just exactly what it is. But you have to admit it kinda looks like a vehicle of some sort, a robotic one at that. The more important point is that she did this entirely on her own with no help whatsoever. It's not exactly a very simple toy. There are 16 different basic parts -
- and 12 basic connections -
In short, her forty-year old dad plays with it a lot. :-) And Steffi's not even five yet!
What makes me really happy when I see Steffi's creations is that 1) it shows a good basic mechanical sense, and 2) an intellectual curiosity to figure out how things work.
But fatherhood is never easy. Every joy, it seems, can have an accompanying worry.
Good mechanical sense today, huwag naman sana ganito 12 years from now:
Elocution Contest Second Placer
Before anything else I would like to set the record straight. This was not some school-wide contest. There were quite a number of sub-groups and Steffi's sub-group had a total of five contestants, so she bested three of them.
Still, you have to keep in mind, this is a child who as a baby would literally cry for hours upon seeing new faces; whom her pre-school was hesitant to admit at first because she refused to reply during her interview.
So we're very happy she seems to have come a long way. It's a decent performance wouldn't you agree?
(and apparently, to her mom's eternal relief, looks like she is not the shortest one at her grade level. :-) )
Still, you have to keep in mind, this is a child who as a baby would literally cry for hours upon seeing new faces; whom her pre-school was hesitant to admit at first because she refused to reply during her interview.
So we're very happy she seems to have come a long way. It's a decent performance wouldn't you agree?
(and apparently, to her mom's eternal relief, looks like she is not the shortest one at her grade level. :-) )
New York New York
I have always said that the lady who owns and runs my daughter's pre-school, Mother Goose Nursery School, has a natural talent for marketing. I really do not mean this in a bad way. Just that I think she, knowingly or unknowingly, has a taste for it and an aptitude for it. The school's annual "program" is just one example. It showcases the kids and makes the parents and grandparents very proud and happy, and there's simply no better advertising than that.
Here's one more for good measure:
Here's one more for good measure:
Graduation Day 2010
In earlier times when nursery school was probably considered a bit of a luxury, I bet no one imagined that one day, commencement exercises would be held for pre-school. But in a day and age where video game competitions are televised, I guess this is just par for the course. So, without further ado, we present the grand entrance:
Then before we continue, commercial muna:
Finally, the moment I'd been waiting for; the awarding of medals:
...and finally, the conferment of degree: :-))
Two years of tuition down, about 16 more to go! Presenting the new graduate:
Then before we continue, commercial muna:
Finally, the moment I'd been waiting for; the awarding of medals:
...and finally, the conferment of degree: :-))
Two years of tuition down, about 16 more to go! Presenting the new graduate:
Disneyland, HK
When Hong Kong Disneyland first opened a few years back and we started discussing when to take Steffi, I was resolute that she should be a minimum of 7 years old before we took her. Anything younger than that, I felt, and she would be unable to really appreciate both the place and how fortunate she was to travel abroad at such a young age.But as it turned out, maybe I'm a bit too old-fashioned. Every day (or at least what seemed like everyday), she would come home from school and regal us with stories of how this classmate or that schoolmate had just returned from Disneyland. I immediately recognized it as the pressure-papa-by-making-him-feel-that-I-am-the-only-child-left-who-hasn't-been-to-Disneyland ploy. Nevertheless, I must admit the tactic still turned out to be effective.
So in one of those father-daughter negotiation sessions, I promised her that if she met a number of behavioral conditions, then we would take her in March, 2010. She then promptly delivered, and promptly reminded me of our deal.
Still, I was determined that the trip would be a learning opportunity. I wanted her to understand that we were not stepping out to the mall, that this is a big thing. (That's papa-speak for a big expense)
So I took out of those square telephone memo pads and made a countdown calendar. I stuck it to her wall and told her to tear a page a day and when she tore all the way to zero then we would go to Disneyland. I wanted to pound into her young mind that this is something that she should view with much anticipation. At the time I made the calendar we were still 114 days away, and I was quite certain that she would lose interest around the 50-80 day range. But as it turned out she remembered everyday and now here we are
Tomorrow we head to the land of Winnie the Pooh and Mickey Mouse.
Trip to HK Disneyland - 3/28/10 to 3/31/10
Well, we're back. It was fun and I think Steffi really enjoyed herself.
HIGHLIGHTS IN PICTURES
Waiting for the plane... (By the way, just in case you're interested you can click on the photographs to magnify them.)
Settling in at the Disney's Hollywood Hotel. Steffi: "Sofitel is still the best hotel ever." Aba, medyo nilait pa!
Unbridled joy. We are really here! Finally, finally...
Over two full days, we enjoyed many rides and attractions; and made many new friends:
So never let it be said that I am a bad father. Hahahahahahahahahahaha
This last picture, taken near Cinderella's Carousel, deserves, I think, a place all its own:
HIGHLIGHTS IN PICTURES
Waiting for the plane... (By the way, just in case you're interested you can click on the photographs to magnify them.)
Settling in at the Disney's Hollywood Hotel. Steffi: "Sofitel is still the best hotel ever." Aba, medyo nilait pa!
Unbridled joy. We are really here! Finally, finally...
Over two full days, we enjoyed many rides and attractions; and made many new friends:
So never let it be said that I am a bad father. Hahahahahahahahahahaha
This last picture, taken near Cinderella's Carousel, deserves, I think, a place all its own:
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