This is my first ever "blog"...amazing what your kids can teach you. Thanks Dave. I sort of feel like that thing that circulated through our office years ago with a picture of a weird looking guy that said "before I couldn't even spell enjiner, and now I are one".
We, Dave's mom and I, just spent eight days with Dave, Frances, Tim and Erica at their house. We arrived on Sunday August 12th and left the following Sunday. It was the day after my 78th birthday so shortly after we got there Frances and the kids appeared with a birthday cake with candles...not 78, that would have been too much of a fire hazard. I loved it. Thanks Frances and the kids...I'm pretty sure Dave didn't bake it.
We went down to be with them during Dave's surgery. We didn't go there to be with Dave the scientist, or Dave the engineer, or Dave the world traveller, we were there to be with Dave, our son. We knew it meant a lot to him for us to be there during the surgery...we wouldn't have been anywhere else it the world.
I think everyone knows about the surgery from Dave's blog so I won't dwell on that. He's covered that very well. I will say that we are very thankful that things turned out good and the future looks great.
This was kind of like a "mini-vacation" for us. Frances had to work so we spent a lot of time with him and the kids. He isn't allowed to drive so Verma did all the driving in his car. She drove because she is much younger than me...she's only 75. With Dave navigating, and Verma driving, I felt perfectly safe and comfortable in the back seat...why not, I taught both of them how to drive. We ran a lot of errands, made trips to the hospital and medical centers for various tests and ate lunch out a couple of times. This was probably the most time we spent with Dave since he was a kid.
Before and after the surgery we spent a lot of time just being together talking about his sisters and their families, cousins and other relatives, reminiscing about trips in the non-air conditioned station wagon in July, when the kids were little driving across the country to visit my family in Illinois.
I love the things we have in common, only different. Dave is studying classical guitar and doing very well. I love guitars and have owned several. At around 15 I learned to play a few basic chords on the guitar and with a few friends in the "hood" we learned to sing country songs with me playing the chords. Many a summer night we sat on the front porch singing songs we learned on the radio. We didn't have TV or electronic games to play.
I have always been a woodworker of sorts and I was very happy to find Dave had found this interest also within the last few years.
And there's engineering where we are miles apart with his scientific research and my (long ago) designing plant facilities for an industrial plant for 30 years.
That's about it for my "first" blog. Good luck tomorrow Dave with the doctor.
Dad
http://webs.directcon.net/goodvg/index.html
Tuesday, August 21, 2007
My New Look
Well, I've changed headgear and am no longer sporting the "pirate" look. Here's what I look like today:
Not so pretty, perhaps, but you have to consider the starting material! I mean, recovering from brain cancer is one thing, but turning me into one of the "beautiful people" we have so many of here in LA is even beyond the ability of my crack medical team... I think of this look as my 40s-noir street-smart look... then again, you may just think of it as my goofy look...
In any case, I'm feeling great! I spent a couple of hours this morning doing some major housecleaning. It felt good to be up and around, making the kids' lives miserable just like nothing was out of the ordinary ("take those shoes up to your room! Is this mess in the kitchen yours?").
The events for today are a visit from Melany Hunt and Tim Colonius, to fill me in on all of the Caltech gossip that I am missing by not going in to the office. Then they will give me a ride to Huntington Hospital for my 11:30 am appointment with Dr. Lam, my radiation oncologist (and head of the radiation oncology department there), to discuss my radiation therapy. Looking forward to getting going on that. It feels great to have the vast majority of the tumor already out, and now the focus is on killing off the microscopic bits that can't be removed surgically, but from which new tumor could grow if left in place. I am very happy to place myself in the able hands of Dr. Lam and his staff to manage this portion of my treatment!
Not so pretty, perhaps, but you have to consider the starting material! I mean, recovering from brain cancer is one thing, but turning me into one of the "beautiful people" we have so many of here in LA is even beyond the ability of my crack medical team... I think of this look as my 40s-noir street-smart look... then again, you may just think of it as my goofy look...
In any case, I'm feeling great! I spent a couple of hours this morning doing some major housecleaning. It felt good to be up and around, making the kids' lives miserable just like nothing was out of the ordinary ("take those shoes up to your room! Is this mess in the kitchen yours?").
The events for today are a visit from Melany Hunt and Tim Colonius, to fill me in on all of the Caltech gossip that I am missing by not going in to the office. Then they will give me a ride to Huntington Hospital for my 11:30 am appointment with Dr. Lam, my radiation oncologist (and head of the radiation oncology department there), to discuss my radiation therapy. Looking forward to getting going on that. It feels great to have the vast majority of the tumor already out, and now the focus is on killing off the microscopic bits that can't be removed surgically, but from which new tumor could grow if left in place. I am very happy to place myself in the able hands of Dr. Lam and his staff to manage this portion of my treatment!
Monday, August 20, 2007
50th Birthday Bash
This October 15th, I will turn 50 years old. [As I told Erica, that means my life is 1/4 over... :) ] To celebrate, we are planning a party the likes of which have not been seen around here in a long time! All of my family, friends, and colleagues are invited, including those of you in Sacramento, Illinois, or wherever else you may be, in addition to the local Pasadena crowd!
We'll probably have a catered party here at the house on Sunday afternoon, Oct. 14. Those of you coming from out of town should plan on coming in Friday and spending a long weekend here. We'll arrange for a block of rooms at some nearby Pasadena hotel. Or those of you with kids might want to combine this with a trip to Disneyland, or Knotts Berry Farm, or somewhere else of your own choosing. And for those coming without kids: perhaps a trip to Tijuana, Vegas, or elsewhere...
This year's birthday is of course special for reasons beyond simply marking the half-century mark. It will celebrate my personal victory over this terrible disease (achieved only with the help of all of you), and the initiation of a new research program at Caltech to explore using nanoparticle-based thermal methods to attack and destroy glioblastomas. For me, it's no longer just about my personal recovery (although that is a prerequisite!): it is about using my experience, and my talents (such as they are), in collaboration with experts in this area, to once and for all DEFEAT this disease, and make total recovery the norm for everyone, not the exception, as it is now with conventional therapies. This GBM disease doesn't know what it's up against! With a crack team of first-rate clinical and research MDs, with a few science/engineering PhDs (like myself) sprinkled in for good measure, the disease doesn't have a chance! We're going to win this by a TKO!
I hope to see all of you in October! You'lll have the opportunity to meet the scientists and doctors from Caltech, Huntington Hospital, and/or other major research centers who are going to make this happen! Don't pass up this once-in-a-lifetime event!
And don't worry about whether you are invited. Everyone who cares enough to be a regular reader of this blog is by definition invited!
We'll probably have a catered party here at the house on Sunday afternoon, Oct. 14. Those of you coming from out of town should plan on coming in Friday and spending a long weekend here. We'll arrange for a block of rooms at some nearby Pasadena hotel. Or those of you with kids might want to combine this with a trip to Disneyland, or Knotts Berry Farm, or somewhere else of your own choosing. And for those coming without kids: perhaps a trip to Tijuana, Vegas, or elsewhere...
This year's birthday is of course special for reasons beyond simply marking the half-century mark. It will celebrate my personal victory over this terrible disease (achieved only with the help of all of you), and the initiation of a new research program at Caltech to explore using nanoparticle-based thermal methods to attack and destroy glioblastomas. For me, it's no longer just about my personal recovery (although that is a prerequisite!): it is about using my experience, and my talents (such as they are), in collaboration with experts in this area, to once and for all DEFEAT this disease, and make total recovery the norm for everyone, not the exception, as it is now with conventional therapies. This GBM disease doesn't know what it's up against! With a crack team of first-rate clinical and research MDs, with a few science/engineering PhDs (like myself) sprinkled in for good measure, the disease doesn't have a chance! We're going to win this by a TKO!
I hope to see all of you in October! You'lll have the opportunity to meet the scientists and doctors from Caltech, Huntington Hospital, and/or other major research centers who are going to make this happen! Don't pass up this once-in-a-lifetime event!
And don't worry about whether you are invited. Everyone who cares enough to be a regular reader of this blog is by definition invited!
Sunday, August 19, 2007
The Way Forward
I have been doing alot of thinking about how to insure I beat this thing. Here's what I think now.
First of all, I will of course first do the prudent things recommended by my physicians to get through the initial period -- conventional radiation and chemotherapy, to fight regrowth of the tumor from those parts that could not be surgically resected. This will buy some time to pursue more innovative and promising approaches.
But then I plan to drop my role as "patient," and take up the role of "scientist/engineer." I intend not only to personally survive this cancer, but I want my case to mark the dawn of a new era in treatment of glioblastomas, in which treatment is curative, not merely palliative. I plan to devote myself and my laboratory at Caltech to achieving this goal, working in close collaboration with my medical team, especially Dr. Igor Fineman, my fantastic neurosurgeon, and a top-notch research scientist himself.
So what is required to achieve this ambitious goal? Fundamentally, it is necessary to be able to selectively destroy tumor tissue, without attacking healthy brain tissue. For GBMs, this is hard, because they are formed from diverse tissue types, and physically intertwine with healthy tissue.
A very promising approach is to use heat to destroy the tumor, if heating agents can be selectively bound to the tumor. One way to do this is to use the body's own immune system, using T-cells that bind to the tumor, and that are also attached to small metal nanoparticles. The net effect is that the tumor can be selectively coated with nanoparticles. These nanoparticles can be heated with an external AC magnetic field, or by laser irradiation at their plasmon frequency (for gold, this is near 600 nm - red light).
In my group at Caltech, we have done quite a bit of work with gold nanoparticles as heaters for other applications (micro/nanostructure formation, fluid pumping in microchannels). But other groups are already using nanoparticles to heat and destroy malignant tumors. I would be very excited to shift our focus to using gold nanoparticles to selectively heat and destroy glioblastomas. I really think this approach may offer the first possibility of curative therapy -- that is, therapy that really gets all of the residual tumor, leaving nothing for further growth!
For this reason, I not only expect to eventually be cured of this GBM, but I expect this will increasingly be the norm! We will go from the present situation, in which survival is measured in months, to one in which patients live many years, and ultimately die of something else. I see no reason to think this cannot happen - it can, should, and (given enough resources and smart people) will happen!
First of all, I will of course first do the prudent things recommended by my physicians to get through the initial period -- conventional radiation and chemotherapy, to fight regrowth of the tumor from those parts that could not be surgically resected. This will buy some time to pursue more innovative and promising approaches.
But then I plan to drop my role as "patient," and take up the role of "scientist/engineer." I intend not only to personally survive this cancer, but I want my case to mark the dawn of a new era in treatment of glioblastomas, in which treatment is curative, not merely palliative. I plan to devote myself and my laboratory at Caltech to achieving this goal, working in close collaboration with my medical team, especially Dr. Igor Fineman, my fantastic neurosurgeon, and a top-notch research scientist himself.
So what is required to achieve this ambitious goal? Fundamentally, it is necessary to be able to selectively destroy tumor tissue, without attacking healthy brain tissue. For GBMs, this is hard, because they are formed from diverse tissue types, and physically intertwine with healthy tissue.
A very promising approach is to use heat to destroy the tumor, if heating agents can be selectively bound to the tumor. One way to do this is to use the body's own immune system, using T-cells that bind to the tumor, and that are also attached to small metal nanoparticles. The net effect is that the tumor can be selectively coated with nanoparticles. These nanoparticles can be heated with an external AC magnetic field, or by laser irradiation at their plasmon frequency (for gold, this is near 600 nm - red light).
In my group at Caltech, we have done quite a bit of work with gold nanoparticles as heaters for other applications (micro/nanostructure formation, fluid pumping in microchannels). But other groups are already using nanoparticles to heat and destroy malignant tumors. I would be very excited to shift our focus to using gold nanoparticles to selectively heat and destroy glioblastomas. I really think this approach may offer the first possibility of curative therapy -- that is, therapy that really gets all of the residual tumor, leaving nothing for further growth!
For this reason, I not only expect to eventually be cured of this GBM, but I expect this will increasingly be the norm! We will go from the present situation, in which survival is measured in months, to one in which patients live many years, and ultimately die of something else. I see no reason to think this cannot happen - it can, should, and (given enough resources and smart people) will happen!
Back in Shingle Springs
We're back home after spending a week with Dave, Frances, Tim and Erica. We didn't get what we had so fervently hoped for, a benign tumor, but we are thankful Dave came through the surgery so well. He amazed us with how rapidly he was back to being himself and was even released from the hospital a day early! I think one of our main task now may be to keep him from doing too much too soon. He is gung-ho to defeat this thing.
Frances has been working in every way to get things done quickly for Dave and by the best people. They will both be doing research and seeking out available treatments and programs. They are a good team with their different scientific backgrounds. We are so grateful Dave has Frances by his side.
Even though there was some sadness in this trip, we enjoyed long talks with Dave about the past, present and future. In addition to some tears, we had many laughs. Of course, we have a long history together so we never lack for something to talk or joke about. We loved being with Dave and his family and look forward with confidence.
Frances has been working in every way to get things done quickly for Dave and by the best people. They will both be doing research and seeking out available treatments and programs. They are a good team with their different scientific backgrounds. We are so grateful Dave has Frances by his side.
Even though there was some sadness in this trip, we enjoyed long talks with Dave about the past, present and future. In addition to some tears, we had many laughs. Of course, we have a long history together so we never lack for something to talk or joke about. We loved being with Dave and his family and look forward with confidence.
Saturday, August 18, 2007
A Walk to the Arroyo
Since I am feeling good today, I decided to take a short walk down to the Arroyo and take a few pictures. I took some shots from the La Loma Bridge, then I went down into the Arroyo and took a picture of the La Loma Bridge.
Then I walked back home by coming up Bradford. It felt very good to get outside in the fresh air, and to get even a little bit of exercise!
Doing well
Things still seem to be going very well, all things considered. Mom and I took a walk around the block this morning, and it felt good to get out in the fresh air. Today is just a day for relaxing -- some blog writing, a bit of napping, some TV watching... We've got a bit of a break until the next "event", which will be the meeting with Dr. Fineman on Wednesday. I am really curious to see how the pathology report comes out. The nature of the tumor cells as shown in the microscope images will go a long way to determine whether this tumor is really a GBM, or might be a lower-grade tumor... Whatever the identity, I am prepared to fight its recurrence with all my energy and all the technology we can muster. I'm starting to learn more about the various chemotherapy and radiation options, including research trials. I will of course follow the guidance of my "crack" medical team, but I plan to play an active role too. And as a Caltech scientist/engineer, I think I can understand some of the science underlying treatment decisions. I plan to learn what I need to know of the science to converse intelligently with my doctors.
And of course I need to get back to my own science (fuel cells, CVD, Cantera, ...) real soon! The Global Climate and Energy project is going to be fascinating, and also I need to write up my section of our paper on our on-chip technique to carry out distillation and concentration (for example, of DNA).
And then I've got to start thinking about ME 122 ("Sustainable Energy Engineering") in January... All of this is very welcome. I am looking forward very much to teaching this class, and think that the preparation for it in the next few months will itself be therapeutic, by giving me something significant and interesting to do that is not about me in a "patient" role.
And then of course there is classical guitar playing... I am really looking forward to improving my technique. Emre has very generously agreed to give me lessons at home, while I can't drive. I am very much looking forward to mastering the Villa-Lobos pieces that I am working on, learning more of the Cardoso pieces, and adding a few more new pieces... This is what I call really fulfilling and fun!
I also want everyone to know I appreciate so much the concern, love, thoughts, and prayers that so many of you have offered! I truly think it makes a real difference! I know without question that I am blessed!
And of course I need to get back to my own science (fuel cells, CVD, Cantera, ...) real soon! The Global Climate and Energy project is going to be fascinating, and also I need to write up my section of our paper on our on-chip technique to carry out distillation and concentration (for example, of DNA).
And then I've got to start thinking about ME 122 ("Sustainable Energy Engineering") in January... All of this is very welcome. I am looking forward very much to teaching this class, and think that the preparation for it in the next few months will itself be therapeutic, by giving me something significant and interesting to do that is not about me in a "patient" role.
And then of course there is classical guitar playing... I am really looking forward to improving my technique. Emre has very generously agreed to give me lessons at home, while I can't drive. I am very much looking forward to mastering the Villa-Lobos pieces that I am working on, learning more of the Cardoso pieces, and adding a few more new pieces... This is what I call really fulfilling and fun!
I also want everyone to know I appreciate so much the concern, love, thoughts, and prayers that so many of you have offered! I truly think it makes a real difference! I know without question that I am blessed!
Friday, August 17, 2007
My new "pirate" look
I'm doing amazingly well, considering what I've been through in the last couple of days. I'm sporting a new "Pirates of the Carribean" look. I feel very good - I am up and about, have lots of energy, and am very happy to be home. I feel basically normal: no pain, no weakness, no sign of mental deficits. (On the other hand, I don't seem to have improved mentally either...)
Basically, I am my normal self. I don't feel like an invalid, or a "patient," and I am looking forward to diving back into teaching and research.
Since the tumor is largely gone now (thank you, Dr. Fineman!), and the radiation and chemo will clean up the residual, I don't see any reason to think this thing is going to stop me. The t-shirt I am wearing is from our Mechanical Engineering Centennial Celebration, but now I have a new interpretation for the logo on the front ("ME 100"). I am interpreting it as my life expectancy...
I am very, very grateful to my loving family, caring friends and colleagues, and my "crack" medical team! You are all fantastic!
Some Photos
What I looked like very recently:
Last pre-operative photo, with short haircut:
What I look like Friday morning, nearly 3 day post op:
This is my "Frankenstein's Monster" look. Don't worry, though - -the next time you see me in person I'll look much more civilized. Frances is out at this minute getting me some sort of new bandage or floppy hat, so that I won't unduly alarm small children or animals.
Last pre-operative photo, with short haircut:
What I look like Friday morning, nearly 3 day post op:
This is my "Frankenstein's Monster" look. Don't worry, though - -the next time you see me in person I'll look much more civilized. Frances is out at this minute getting me some sort of new bandage or floppy hat, so that I won't unduly alarm small children or animals.
Thursday, August 16, 2007
Next steps
The immediate task is to recover from the surgery. Then on Wednesday, I'll have an appointment with Dr. Fineman, and on Thursday one with Dr. Girard. At these meetings, we'll presumably discuss the long-term treatment options, which will require getting a neuro-oncologist involved too, to manage the long-term radiation and chemotherapy program. At this point, I am willing to do whatever it takes to maximize my odds of long-term survival - radiation, chemo: bring it on. I've got far too much to live for to cut life short for any reason.
Discharged
This afternoon I was discharged from the hospital and am now at home. Even though the Huntington staff were all great, there is no place like home. And it is great to see Tim and Erica again.
What I have
When Dr Fineman finally got my head opened up and could see the tumor, he found that it was not a slow-growing, benign tumor, but instead just the opposite: a glioblastoma multiforme or GBM,the most aggressive form of the primary brain tumors known collectively as gliomas. He broke the news to Frances and me today at our initial post-operative meeting with him. These results are still preliminary, however, since the pathology report is not finished. We will have a second post-operative meeting with him next Wednesday, hopefully with the final pathology report.
But from my perspective, there is NO REASON to despair. Although the "average" patient with a GBM may not do particularly well, I have never been "average" in anything I've done, and I sure don't plan to start now. There are patients who beat this, and I plan to be one of them. I have a crack medical team, a wonderful wife and family, and great friends and colleagues world-wide. I am involved in scientific work (energy research, specificallly fuel cells) that I find very stimulating, and that I believe is important, not only for my personal survival, but for our survival as a civilization into he next decades and centuries. That must count for something!
I am not one to rely on "God" stepping in to fix things - I tend to trust in science and technology. (Nevertheless, prayers to the God of your choice [Christian, Jewish, Buddhist, ...] will be gratefully accepted!) GBMs do respond to radiation and chemotherapy, and so there are things one can do to fight the residual tumor that couldn't be surgically resected. I am more than happy to do radiation, chemo, or whatever it takes to beat this thing! I feel we're only beginning to fight!
But from my perspective, there is NO REASON to despair. Although the "average" patient with a GBM may not do particularly well, I have never been "average" in anything I've done, and I sure don't plan to start now. There are patients who beat this, and I plan to be one of them. I have a crack medical team, a wonderful wife and family, and great friends and colleagues world-wide. I am involved in scientific work (energy research, specificallly fuel cells) that I find very stimulating, and that I believe is important, not only for my personal survival, but for our survival as a civilization into he next decades and centuries. That must count for something!
I am not one to rely on "God" stepping in to fix things - I tend to trust in science and technology. (Nevertheless, prayers to the God of your choice [Christian, Jewish, Buddhist, ...] will be gratefully accepted!) GBMs do respond to radiation and chemotherapy, and so there are things one can do to fight the residual tumor that couldn't be surgically resected. I am more than happy to do radiation, chemo, or whatever it takes to beat this thing! I feel we're only beginning to fight!
Wednesday, August 15, 2007
Wednesday
After my surgery yesterday, today was devoted to recovery. I spent it in the Intensive Care Unit (room 3). My memory of today is not so clear, in part because I slept most of the day.
Tuesday, August 14, 2007
How this all began
It occurs to me that some of you haven't heard the story of how this all began, so let me give a summary. We were on a fantastic safari vacation in Kenya, with Frances's parents Evelyn and Leon, and their long-time friends, the Chus. All together, we were a group of 18 people. We spent most of a week looking at and taking pictures of all sorts of wild animals - lions, wildebeast, elephants, etc. It was really fascinating. See my other blog for more about the safari.
On Saturday morning, August 4, I suffered a seizure while sitting on the patio in front of our first-floor room at the game reserve where we were staying. I had never had a seizure before, and didn't know what was happening. For me, the first symptom was a sense of great anxiety, but without any specific focus. (I decided I must be anxious that we wouldn't get to the small airport in time to make our plane to Nairobi.) This was followed less than a minute later by a strange metallic taste in my mouth. As I found out later, both are commonly experienced in the initial phase of a seizure (the so-called "aura").
The rest I only know second-hand, because I have absolutely no memory of anything for the next hour or two, until I woke up lying in bed in our room, not knowing how I got to the bed. (I found out later that Frances had recruited 4 strong guys from our tour group to carry me from the patio in front of our room where the seizure occurred into the bed.) Apparently my muscles all went stiff during the seizure, and my head turned sharply to the right, with my arms and legs contorted in unnatural positions. The kids were scared because they didn't know what I was doing, and they told me later that I was yelling "We must get on the plane!!" in an unnatural "possessed" voice.
Then the seizure passed, and I went limp in the bed. At first, Frances would try to rouse me but I could not be roused. After a while (5 minutes?) I would respond to her questions, but my answers didn't make sense. Finally, after another 5 or 10 minutes, I was fully awake and could respond more-or-less coherently to her questions.
At first, we were not thinking about a tumor at all. We thought it must be the result of something I ate. Frances was suspecting the old cheese I had eaten for breakfast, which had some visible mold on the surface that shouldn't have been there. I had eaten the whole slice of cheese, including the mold spots (hey, I was hungry).
Once the seizure was over, and I seemed to be back to normal, we continued with our sight-seeing. We took the small plane to Nairobi as planned, where we were met by Benson from the company running the tour, and he drove us to the hotel. Frances had gotten some valium pills, which can be used as an anti-seizure medication, and had given me some before the flight to Nairobi. So by this time I was a bit groggy, but feeling pretty good. From what I remember, after lunch we said good-bye to Leon, Evelyn, and the Chus, since they were booked on flights leaving Saturday, but we were leaving Sunday. The four of us then went up to our room, and all took naps.
On Sunday morning, we went to the Elephant Orphanage and to the Giraffe Center. Both were interesting, and by this time I was feeling fine. (The valium helped with that!) I resolved to be a little more careful with what I eat - no more moldy cheese! Later in the day, Benson took us to the Nairobi airport, and after the usual lines, delays, etc., we boarded a 747 plane for London, where we would spend 5 hours and then transfer to another flight for Los Angeles. I thought the seizure was an isolated event, and was all finished.
The flight was basically uneventful. I did experience a hint of an aura on the flight, but it didn't become a full-blow seizure. When we got home, we unpacked a bit but then Frances took me over to Huntington Hopital for some more tests, to better determine what caused this seizure. There I met Drs. Girard (neurologist) and Dr. Fineman (neurosurgery), both of whom impressed me very much.
They ran a CT scan, which looked basically normal. But then they did an MRI, and it was clearly abnormal. In the left temporal lobe of my brain, there was a "low density" region, which was consistent with the presence of a small tumor. Dr. Fineman told me that to know more, they would really have to go in and find our just what type of tumor it is. (There are some 140 different types, with very different characteristics and prognoses!)
So my seizure wasn't caused by moldy cheese. It was caused by a tumor. Well, this might be considered "bad news," but I didn't take it that way when they told me. It offered something concrete to explain what was going on. Only once you know what a problem is, is it possible to come up with a plan to to fix it...
So that brings us to today's activities. Hopefully, before this day is over, Drs. Fineman and Girard will know what sort of tumor I have, and maybe (even better) Dr. Fineman will be able to cleanly remove it.
On Saturday morning, August 4, I suffered a seizure while sitting on the patio in front of our first-floor room at the game reserve where we were staying. I had never had a seizure before, and didn't know what was happening. For me, the first symptom was a sense of great anxiety, but without any specific focus. (I decided I must be anxious that we wouldn't get to the small airport in time to make our plane to Nairobi.) This was followed less than a minute later by a strange metallic taste in my mouth. As I found out later, both are commonly experienced in the initial phase of a seizure (the so-called "aura").
The rest I only know second-hand, because I have absolutely no memory of anything for the next hour or two, until I woke up lying in bed in our room, not knowing how I got to the bed. (I found out later that Frances had recruited 4 strong guys from our tour group to carry me from the patio in front of our room where the seizure occurred into the bed.) Apparently my muscles all went stiff during the seizure, and my head turned sharply to the right, with my arms and legs contorted in unnatural positions. The kids were scared because they didn't know what I was doing, and they told me later that I was yelling "We must get on the plane!!" in an unnatural "possessed" voice.
Then the seizure passed, and I went limp in the bed. At first, Frances would try to rouse me but I could not be roused. After a while (5 minutes?) I would respond to her questions, but my answers didn't make sense. Finally, after another 5 or 10 minutes, I was fully awake and could respond more-or-less coherently to her questions.
At first, we were not thinking about a tumor at all. We thought it must be the result of something I ate. Frances was suspecting the old cheese I had eaten for breakfast, which had some visible mold on the surface that shouldn't have been there. I had eaten the whole slice of cheese, including the mold spots (hey, I was hungry).
Once the seizure was over, and I seemed to be back to normal, we continued with our sight-seeing. We took the small plane to Nairobi as planned, where we were met by Benson from the company running the tour, and he drove us to the hotel. Frances had gotten some valium pills, which can be used as an anti-seizure medication, and had given me some before the flight to Nairobi. So by this time I was a bit groggy, but feeling pretty good. From what I remember, after lunch we said good-bye to Leon, Evelyn, and the Chus, since they were booked on flights leaving Saturday, but we were leaving Sunday. The four of us then went up to our room, and all took naps.
On Sunday morning, we went to the Elephant Orphanage and to the Giraffe Center. Both were interesting, and by this time I was feeling fine. (The valium helped with that!) I resolved to be a little more careful with what I eat - no more moldy cheese! Later in the day, Benson took us to the Nairobi airport, and after the usual lines, delays, etc., we boarded a 747 plane for London, where we would spend 5 hours and then transfer to another flight for Los Angeles. I thought the seizure was an isolated event, and was all finished.
The flight was basically uneventful. I did experience a hint of an aura on the flight, but it didn't become a full-blow seizure. When we got home, we unpacked a bit but then Frances took me over to Huntington Hopital for some more tests, to better determine what caused this seizure. There I met Drs. Girard (neurologist) and Dr. Fineman (neurosurgery), both of whom impressed me very much.
They ran a CT scan, which looked basically normal. But then they did an MRI, and it was clearly abnormal. In the left temporal lobe of my brain, there was a "low density" region, which was consistent with the presence of a small tumor. Dr. Fineman told me that to know more, they would really have to go in and find our just what type of tumor it is. (There are some 140 different types, with very different characteristics and prognoses!)
So my seizure wasn't caused by moldy cheese. It was caused by a tumor. Well, this might be considered "bad news," but I didn't take it that way when they told me. It offered something concrete to explain what was going on. Only once you know what a problem is, is it possible to come up with a plan to to fix it...
So that brings us to today's activities. Hopefully, before this day is over, Drs. Fineman and Girard will know what sort of tumor I have, and maybe (even better) Dr. Fineman will be able to cleanly remove it.
Big Day Today
Well, today's the big day. My surgery begins at 2 pm, and it's expected to take about 3 hours. I'll check in to the hospital at noon, and get properly instrumented and issued one of those lovely hospital gowns.
I find myself in good spirits. I do know the potential seriousness of what will take place today, but somehow I truly think it will be OK. Maybe it is just an irrational but strong belief in my own indestructability. But I think that what (little) we know so far supports the idea that this will prove to be (as brain tumors go) relatively modest. I say this because other than the seizure last Saturday that started this whole thing, I have few if any symptoms:
A big part of the reason I am in good spirits is that I am surrounded by family. My wife Frances (herself an MD) has been an incredible source of strength (and to top it off, she has the insider's knowledge of how to cut through hospital red tape!). I owe her for very much, including for getting me safely home from Kenya, where I had the seizure, with no further incidents. My kids Tim (12) and Erica (10) are handling this great, even though I think the seizure, which they witnessed, was scary for them. (They told me later I was acting like I was "possessed by demons" - well, maybe I was in a sense.)
My parents flew down here Sunday night from Sacramento, one day after my Dad's 78th birthday. They plan to stay all week, and have offered to help in any way they can. Their love, support, and help mean more to me than I can ever express in words. It is a great comfort to have them here.
Well, I guess that's about all for now. The next few posts will probably come from Frances or my parents, since I will likely be in no condition to post anything for at least a day or two. My major task of the morning is to get them set up with Google accounts and teach them how to blog... [And you thought neurosurgery was hard! (Just kidding, Frances, Mom, and Dad!)]
I find myself in good spirits. I do know the potential seriousness of what will take place today, but somehow I truly think it will be OK. Maybe it is just an irrational but strong belief in my own indestructability. But I think that what (little) we know so far supports the idea that this will prove to be (as brain tumors go) relatively modest. I say this because other than the seizure last Saturday that started this whole thing, I have few if any symptoms:
- no headache or other pain
- no obvious deficits in reasoning (OK, some of you may beg to differ on this point...),
- no worse memory than my usual absent-minded-professor memory.
A big part of the reason I am in good spirits is that I am surrounded by family. My wife Frances (herself an MD) has been an incredible source of strength (and to top it off, she has the insider's knowledge of how to cut through hospital red tape!). I owe her for very much, including for getting me safely home from Kenya, where I had the seizure, with no further incidents. My kids Tim (12) and Erica (10) are handling this great, even though I think the seizure, which they witnessed, was scary for them. (They told me later I was acting like I was "possessed by demons" - well, maybe I was in a sense.)
My parents flew down here Sunday night from Sacramento, one day after my Dad's 78th birthday. They plan to stay all week, and have offered to help in any way they can. Their love, support, and help mean more to me than I can ever express in words. It is a great comfort to have them here.
Well, I guess that's about all for now. The next few posts will probably come from Frances or my parents, since I will likely be in no condition to post anything for at least a day or two. My major task of the morning is to get them set up with Google accounts and teach them how to blog... [And you thought neurosurgery was hard! (Just kidding, Frances, Mom, and Dad!)]
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