Friends,
I have been very busy, trying to understand what is going on with my brain tumor, and as you know me of course I have been working extremely hard, doing extensive research at ~80 hrs a week for the past month trying to save my life of course! Digging deep into the causes of cancer, and coming up with a series of treatment options, tailored to not only brain tumors in general, but takes into account several features of my GBM, while at the same undergoing some very interesting preparatory treatments to mostly oxygenate my cells, alkalize my body, and build up my immune system, something which can be both subjectively and objectively measured. I hope to write about it more as my treatment and schedule allows.
For example, I found out that my Vitamin D3 blood levels were subcritical low, and I have been on 100,000 IU/day of Vitamin D3 for almost 6 weeks now, but my Vitamin D3 blood levels are still critically low, so I will be going to go to >1,000,000 IU/day, while monitoring my plasma and serum Ca levels, to warn against hypercalcemia. But there are some more urgent things to do first! But V-D3 deficiency is just one example!
The tumor is still growing, albeit the growth, slowed from a volume doubling time of 7 days in late Nov, to 15 days in late Dec, to about 33 days 2 weeks ago. The tumor and the edema around it 14 days ago was essentially the same size where it was when I was first diagnosed 8/24.
Now, my life here in HI has slowed down stupendously, especially in the last few days, as I have wound down all R&D ON MY treatment plan. From now on it is execution, and being able to take it easy is all built into the plan, and believing in one self is of course key!
So many things are just plain funny here, like when you see this Mr. ignorant bigshot, who obviously rented a big Mercedes trying to impress anyone on the Big Island, only to find out that the longest section of road w realistic speed limit of 55mph is about 1/8 mi long, because there is always this ancient pickup truck merging into traffic, and then Mr Bigshot hits the brakes, again, and again....until they start to glow nicely red, just like Mr. Bigshot's face lol....
I finally had a phone conversation with one "big-shot" doctor from CUMC (for now, just to protect the guilty :-), who has not seen or spoken to me since the end of Nov.
CUMC had been in contact with one of my two local doctors here by the name of Tony deSalvo, MD. Tony is the only traditional oncologist serving a community of ~50,000 people. He and his staff of <10 people actually treat 350 patients every week in two hospitals, one in Kona, and the other in Waimea, and he sees every one of his 350 patients. He is by far the most caring doctor I have ever seen, and he will make as much time for each patient as needed, working sometimes until 9pm, and often the wait time in his office is 2-4 hours but I have seen almost no complains. But at least he takes off Tue, Sat, Sun. My second local doctor is Michael Traub, ND, and a board certified ND oncologist (who knew that this existed), and these two local doctors MD & ND) work well together. NOW luckily ND do things that no MD would be allowed to do!
So anyhow, back in Dec, CUMC TOLD Tony that based on one MRI in Dec and some small transitional feature in that one MRI scan I needed emergency surgery right away, and that Tony should tell me "CUMC" opinion, which Tony did. I told him to tell CUMC, "thank you very much for the input, but I rather would continue my alternative & integrative work here in HI". I also told Tony privately "these CUMC guys are nuts", and Tony totally agreed. Then Tony tells me "stay right here, I have something for you!" A few minutes later he comes running back (he is a big guy), breathing hard past waiting patients with the latest hiking info and his own well used map, loading me up with the latest local information to hiking on the Big Island. Just my kind of guy!
I had to laugh so hard, and told him how funny he looked. We both stood there and so we were both laughing with one of older Hawaiian woman patient joining in whole-heartedly.
CUMC and I managed to somehow agree on some time to talk on the phone early AM HST. I just seen one of those magnificent almost full moon set in the Pacific ocean. What a sight, and I was so happy to see that and was laughing really hard, not something sentimental, b/c the twilight is coming at the same time, and the contrast to the almost full moon disappearing in the ocean, just unbelievable. I was just really happy to be and feel alive, but I also wept a bit, it was an intense moment.
So, anyhow, CUMC finally calls in from NYC as we had discussed, I decide to be quite business like. CUMC and I talk a few minutes, and after talking about CUMC opinions about the latest MRI (well yeah I know it is growing, what else? Midline shift. I saw that too. Yes I will visit UCSF just in case..). CUMC suddenly tells me: Now I know what is going on with you! And I am like "excuse me", and just start to giggle! CUMC explains to me that I had told Tony that I was refusing CUMC advice, and therefore I must be in total denial, and CUMC had somehow concluded that therefore I was depressed. So when CUMC tells me that I was depressed, I had to laugh! And without even waiting for an explanation from my side, now comes the hammer: "But I can tell right now you are manic", at that point I wake up my poor mom from more laughter! OK, I am rolling on the floor at this point, CUMC is suddenly out of time, and CUMC tells Tony or Michael that I am manic depressive!
The locals ARE STILL ROARING!
About Monday: It is my 48th BIRTHDAY ;-)
Monday, February 1, 2010
Friday, January 1, 2010
A Fireworks Story...
Here is a story that I remembered last night, while having dinner with my mother, while the fireworks at the various resorts and hotels were going off. (For those who wonder, my father is at our home in the Bay Area, recovering after having caught something at the AGU meeting in San Francisco, and also working with his unrelenting and infectious enthusiasm :-)
Anyhow, this is a story etched in my mind, which my mother completely forgot, and so while retelling her the story we had a wonderful laugh while we welcomed 2010!
Many years ago, sometime back around 1995, when we three were still living in San Francisco, we had decided to go and see the fireworks for the Fourth of July from the Bay. There are these big ferries that take you out towards Alcatraz Island, and you can thus enjoy the fantastic fireworks the city puts on each year, granted in often very chilly conditions, but a spectacle I recommend to anyone.
For some reason, we had had a very busy day that day, and were not able to get dinner in time to see the fireworks, and came up with a last minute plan to drive out by car, park somewhere close to the Fisherman’s Wharf buy tickets for a ferry ride, find a nice restaurant and have dinner, hop onto one of the ferries, have a blast, and then get back home after the fireworks.
However, there was just one little problem: Most people had exactly the same idea.
As most people in San Francisco know, parking your car near the waterfront on July 4 is not trivial. However, we did find a parking spot somewhere on or close to Bay Street, and so I especially was so happy that part 1 of our plan was executed flawlessly. We also bought the tickets for the ferry. Excellent so far.
Now for dinner. Let’s just say that the waiting times were measured not in fractions of hours, but rather in hours – EVERYWHERE, and we did not have enough time for that.
So what do three PhDs decide to do? They improvise. We set our eyes on some grocery market and I clearly remember it being a store on Bay or Beach Street. The store was pretty empty, and we had a large selection of foods available for us. We decided on some wonderful smelling fresh broiled grilled chicken, some tuna, baguette, ham and Swiss cheese, and some small prepared salads, not to forget some hot tea, and plenty of napkins.
So now the next question was where to eat. Everything was full, including the coffee shops, so no luck there. But there was this wonderful wooden bench, with the last of the sunlight warming us, just large enough for the three of us, to put the food and the drinks between us, and enough place in front of us to put the to grocery bags full of food on the pavement. It was still warm (cooling quickly though), nothing like the typical late foggy July evening. Living in San Francisco, we had dressed warm and very casual, meaning dressed down in warm but well-worn clothing. My mother, being from the thrifty WWII generation, hates to throw anything out, unless it falls apart, or looks more like a fashionable “rag”. We had still time to spare, but we were all hungry, and I remember almost passing out from hunger. Those were the days when I could and would eat anything, just because my metabolic rate was astronomical and I mean astronomical, as I will write about that some other time.
So imagine for a moment the three of us in warm well worn clothes, each of us totally color mismatched, sitting in front of some store on a wooden bench – sprawled out, eating, and munching away with the grocery bags in front of us. My parents were so engaged in some discussion of their own (as they almost always do), with all these strangers walking past us.
Nothing remarkable so far, but then things got interesting. Someone walked by, mumbling something like “Happy Fourth”, and he dropped a $1 bill in one of the now empty grocery bags. And someone else threw in a few quarters about thirty seconds later. My parents for their part missed most of this. Anyhow, soon, all kinds of strangers dropped more one dollar and five dollar bills in our grocery bags. By the time we left that bench to head to the ferry, we had a free dinner and free ferry tickets.
So next time you are in San Francisco on July 4th, and decide to have dinner on a bench next to a busy walkway, try to dress as casual as possible, looking like a homeless (for that is what we must have looked like to the strangers), and maybe you too will have a free dinner and a free ferry ticket. Or maybe not... ;-)
Happy New Year from Hawaii !!!
Anyhow, this is a story etched in my mind, which my mother completely forgot, and so while retelling her the story we had a wonderful laugh while we welcomed 2010!
Many years ago, sometime back around 1995, when we three were still living in San Francisco, we had decided to go and see the fireworks for the Fourth of July from the Bay. There are these big ferries that take you out towards Alcatraz Island, and you can thus enjoy the fantastic fireworks the city puts on each year, granted in often very chilly conditions, but a spectacle I recommend to anyone.
For some reason, we had had a very busy day that day, and were not able to get dinner in time to see the fireworks, and came up with a last minute plan to drive out by car, park somewhere close to the Fisherman’s Wharf buy tickets for a ferry ride, find a nice restaurant and have dinner, hop onto one of the ferries, have a blast, and then get back home after the fireworks.
However, there was just one little problem: Most people had exactly the same idea.
As most people in San Francisco know, parking your car near the waterfront on July 4 is not trivial. However, we did find a parking spot somewhere on or close to Bay Street, and so I especially was so happy that part 1 of our plan was executed flawlessly. We also bought the tickets for the ferry. Excellent so far.
Now for dinner. Let’s just say that the waiting times were measured not in fractions of hours, but rather in hours – EVERYWHERE, and we did not have enough time for that.
So what do three PhDs decide to do? They improvise. We set our eyes on some grocery market and I clearly remember it being a store on Bay or Beach Street. The store was pretty empty, and we had a large selection of foods available for us. We decided on some wonderful smelling fresh broiled grilled chicken, some tuna, baguette, ham and Swiss cheese, and some small prepared salads, not to forget some hot tea, and plenty of napkins.
So now the next question was where to eat. Everything was full, including the coffee shops, so no luck there. But there was this wonderful wooden bench, with the last of the sunlight warming us, just large enough for the three of us, to put the food and the drinks between us, and enough place in front of us to put the to grocery bags full of food on the pavement. It was still warm (cooling quickly though), nothing like the typical late foggy July evening. Living in San Francisco, we had dressed warm and very casual, meaning dressed down in warm but well-worn clothing. My mother, being from the thrifty WWII generation, hates to throw anything out, unless it falls apart, or looks more like a fashionable “rag”. We had still time to spare, but we were all hungry, and I remember almost passing out from hunger. Those were the days when I could and would eat anything, just because my metabolic rate was astronomical and I mean astronomical, as I will write about that some other time.
So imagine for a moment the three of us in warm well worn clothes, each of us totally color mismatched, sitting in front of some store on a wooden bench – sprawled out, eating, and munching away with the grocery bags in front of us. My parents were so engaged in some discussion of their own (as they almost always do), with all these strangers walking past us.
Nothing remarkable so far, but then things got interesting. Someone walked by, mumbling something like “Happy Fourth”, and he dropped a $1 bill in one of the now empty grocery bags. And someone else threw in a few quarters about thirty seconds later. My parents for their part missed most of this. Anyhow, soon, all kinds of strangers dropped more one dollar and five dollar bills in our grocery bags. By the time we left that bench to head to the ferry, we had a free dinner and free ferry tickets.
So next time you are in San Francisco on July 4th, and decide to have dinner on a bench next to a busy walkway, try to dress as casual as possible, looking like a homeless (for that is what we must have looked like to the strangers), and maybe you too will have a free dinner and a free ferry ticket. Or maybe not... ;-)
Happy New Year from Hawaii !!!
Thursday, December 31, 2009
My latest MRI results and a Proseperous and Happy New 2010!!!
I finally did get my second MRI here in North Hawaii Community Hospital on 12/30/09 at noon. The scheduling had been a little nightmare, which I am 100% sure will not be repeated again :-)
So here is the preliminary result: My tumor is still growing, but growth rate has slowed significantly, something I am really, really, REALLY thankful about, and which gives me the confidence to move forward on my path.
(1) volume doubling time went from ~9 days to ~20 days. That may not sound like much, but it is an exponential growth, meaning that instead of quintupling in volume every three weeks, it now only doubles every three weeks. (2) The linear growth dimensions per unit time have also have gone down drastically. (3) The surface area growth is constant, which means the angiogenesis has at least leveled off.
So what does this all mean? It means that something with my treatment is FINALLY working. But, it also means that I have to be as diligent as before, and that I also need to work as hard as before. So, I am starting the new year with confidence in some more aggressive treatments, which are designed to work in ways that will NOT endanger my health!
The issue with brain tumors is that if you kill them outright, you can have a few really nasty side effects like:
(1) leakage of dead and highly toxic debris of tumor cells into the brain, which can lead to massive edemas, and much more serious complications, (2) internal bleeding if the blood supply system is suddenly disrupted, and (3) escape of any surviving cancerous stem cells into the brain, which can lead to new sources of cancer.
One has to remember that every cancer is different, every person is different, every treatment has to be highly specialized, but that there are ways to get this done without the so called “gold standard” of radiation and chemotherapy. That remains my foremost goal, for reasons I have mentioned more than once in my blog.
Thus, the ideal thing for me to do (in my opinion, and you may have a different opinion :-) is to:
(1) stop the angiogenesis, (2) build up the immune system, and (3) then either let the immune system kill the tumor or convert them back to healthy cells. The latter one may be a contentious point (and you can believe whatever you like, it is a free country after all :-), but again unless you do your homework (and I mean homework, like me working 4-8 hours a day on science research together with my various conventional and naturopathic oncologists and other doctors, colleagues, etc.) and actually look at the biology and chemistry of cancer, the answers are becoming quite consistent.
So easy and deliberate does it in this case.
The focus until now was to stop the uncontrollable growth of my cancer, and to get the growth rate to go down by controlling the angiogenesis. This seems to be finally working.
However, I also have to look at much more forward looking options like: (a) oxygenation of the cells, (b) chemical properties of the cells (like the all important pH value of cancer cells for which Otto Warburg got two Nobel Prizes for), and (c) what actually caused my brain cancer in the first place. This one sounds like an impossibility, but I am getting more and more clues, which allows me address some of the fundamental issues.
So there is no letting up, there is more and more research, more changes in my medical routine, more advanced treatments. However, I am very happy to end 2009 on a high note, with the certainty that my regime is finally showing results.
I have two things to add:
1. Remember that you are in charge of your own health, especially if someone wants to talk you into a “gold standard”. You and only you control your own destiny, and there are several Supreme Court decisions on “Freedom of Choice in Health Care” that have enshrined this, including the one by Cruzan v. Director, Missouri Dept. of Health, 1990:
US Supreme Court Chief Justice William Rehnquist: “[No] right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person...; Justice Cardozo ... aptly described this doctrine: 'Every human being of adult years and sound mind has a right to determine what shall be done with his own body' ”
US Supreme Court Justice William Brennan added: "Fundamental Rights are protected not only against heavy-handed frontal attacks, but also from being stifled by more subtle government interference ...; The root premise of informed consent is that '[Every human being of adult years and sound mind has a right to determine what shall be done with his own body.]’ "
2. Many people have helped me. Many have been totally selfless in their support, given their help with no expectations of anything in return, and I have met many amazing people along the way in the last four months. Many have emailed me or called me and I want to thank ALL of you who did so. I really am thankful for all who support me, be it with their actions, in their thoughts, or with their prayers. THANK YOU ALL!
The only sore point is that some have complained to me that they are not getting a response from me. For those who feel offended, the worst you get is a bruised ego, but for me this is not about ego, it is a question of life or death! Since August 24, 2009, every single day I have only been 7-10 days away from major surgery or death, and fully aware of that. Imagine you lived with this for months on end! A cancer patient with a tumor that growth as fast as mine, has to be focused 100% on him or herself, 24 hours a day. Always remember that FOR THE CANCER PATIENT NOTHING ELSE BESIDES THEIR LIFE COUNTS. This has nothing to do with ego, or any personal preferences. You have to be totally, 100% EGOCENTRIC, because your life depends on it, and research clearly shows that those who do otherwise are much, much more likely not to make it. So those who feel neglected, I can only say: you don’t have any idea what it feels like to live “under the threat of agony and death” for months on end! But that too is part of my journey of what I have learned. You HAVE to SURVIVE by any means!
With this, I want to end 2009 (what a decade :-) on a high note, and wish all of you a wonderful, happy, and prosperous 2010!
So here is the preliminary result: My tumor is still growing, but growth rate has slowed significantly, something I am really, really, REALLY thankful about, and which gives me the confidence to move forward on my path.
(1) volume doubling time went from ~9 days to ~20 days. That may not sound like much, but it is an exponential growth, meaning that instead of quintupling in volume every three weeks, it now only doubles every three weeks. (2) The linear growth dimensions per unit time have also have gone down drastically. (3) The surface area growth is constant, which means the angiogenesis has at least leveled off.
So what does this all mean? It means that something with my treatment is FINALLY working. But, it also means that I have to be as diligent as before, and that I also need to work as hard as before. So, I am starting the new year with confidence in some more aggressive treatments, which are designed to work in ways that will NOT endanger my health!
The issue with brain tumors is that if you kill them outright, you can have a few really nasty side effects like:
(1) leakage of dead and highly toxic debris of tumor cells into the brain, which can lead to massive edemas, and much more serious complications, (2) internal bleeding if the blood supply system is suddenly disrupted, and (3) escape of any surviving cancerous stem cells into the brain, which can lead to new sources of cancer.
One has to remember that every cancer is different, every person is different, every treatment has to be highly specialized, but that there are ways to get this done without the so called “gold standard” of radiation and chemotherapy. That remains my foremost goal, for reasons I have mentioned more than once in my blog.
Thus, the ideal thing for me to do (in my opinion, and you may have a different opinion :-) is to:
(1) stop the angiogenesis, (2) build up the immune system, and (3) then either let the immune system kill the tumor or convert them back to healthy cells. The latter one may be a contentious point (and you can believe whatever you like, it is a free country after all :-), but again unless you do your homework (and I mean homework, like me working 4-8 hours a day on science research together with my various conventional and naturopathic oncologists and other doctors, colleagues, etc.) and actually look at the biology and chemistry of cancer, the answers are becoming quite consistent.
So easy and deliberate does it in this case.
The focus until now was to stop the uncontrollable growth of my cancer, and to get the growth rate to go down by controlling the angiogenesis. This seems to be finally working.
However, I also have to look at much more forward looking options like: (a) oxygenation of the cells, (b) chemical properties of the cells (like the all important pH value of cancer cells for which Otto Warburg got two Nobel Prizes for), and (c) what actually caused my brain cancer in the first place. This one sounds like an impossibility, but I am getting more and more clues, which allows me address some of the fundamental issues.
So there is no letting up, there is more and more research, more changes in my medical routine, more advanced treatments. However, I am very happy to end 2009 on a high note, with the certainty that my regime is finally showing results.
I have two things to add:
1. Remember that you are in charge of your own health, especially if someone wants to talk you into a “gold standard”. You and only you control your own destiny, and there are several Supreme Court decisions on “Freedom of Choice in Health Care” that have enshrined this, including the one by Cruzan v. Director, Missouri Dept. of Health, 1990:
US Supreme Court Chief Justice William Rehnquist: “[No] right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person...; Justice Cardozo ... aptly described this doctrine: 'Every human being of adult years and sound mind has a right to determine what shall be done with his own body' ”
US Supreme Court Justice William Brennan added: "Fundamental Rights are protected not only against heavy-handed frontal attacks, but also from being stifled by more subtle government interference ...; The root premise of informed consent is that '[Every human being of adult years and sound mind has a right to determine what shall be done with his own body.]’ "
2. Many people have helped me. Many have been totally selfless in their support, given their help with no expectations of anything in return, and I have met many amazing people along the way in the last four months. Many have emailed me or called me and I want to thank ALL of you who did so. I really am thankful for all who support me, be it with their actions, in their thoughts, or with their prayers. THANK YOU ALL!
The only sore point is that some have complained to me that they are not getting a response from me. For those who feel offended, the worst you get is a bruised ego, but for me this is not about ego, it is a question of life or death! Since August 24, 2009, every single day I have only been 7-10 days away from major surgery or death, and fully aware of that. Imagine you lived with this for months on end! A cancer patient with a tumor that growth as fast as mine, has to be focused 100% on him or herself, 24 hours a day. Always remember that FOR THE CANCER PATIENT NOTHING ELSE BESIDES THEIR LIFE COUNTS. This has nothing to do with ego, or any personal preferences. You have to be totally, 100% EGOCENTRIC, because your life depends on it, and research clearly shows that those who do otherwise are much, much more likely not to make it. So those who feel neglected, I can only say: you don’t have any idea what it feels like to live “under the threat of agony and death” for months on end! But that too is part of my journey of what I have learned. You HAVE to SURVIVE by any means!
With this, I want to end 2009 (what a decade :-) on a high note, and wish all of you a wonderful, happy, and prosperous 2010!
Wednesday, December 30, 2009
Leave time donations and MRI
This is (mostly) a quick note to all my colleagues at NASA and in the Federal Government
I have gotten so many emails from my colleagues mostly at NASA (as well as other Federal Agencies) volunteering their leave time for me under the Voluntary Leave Transfer Program (VLTP), and I want to express my gratitude to all of you!
This has finally been enabled in the NASA WebTads application, thanks to last minute action by Krisstina Willmoth at NASA Ames, and Evelyn Abrams at the NSSC (NASA Shared Services Center), who kindly also volunteered to take questions on this issue at evelyn.p.abrams@nasa.gov or on her phone at 228-813-6045.
This information is timely, especially if you want to donate use-or-loose leave, which I believe has to be done by Monday Jan 4, 2010.
If you are working at another federal agency besides NASA, leave donations will also be possible, and you can do so using OPM630B, which you can get on the web, fill out, and fax to the NSSC at877-677-2123 [Correction from Evelyn Abrams: "Please fax OPM630B for outside annual leave donations to the NSSC at (866) 779-6772 or you can e-mail to me at evelyn.p.abrams@nasa.gov"]
I have to run off to my next MRI in Waimea North Hawaii Community Hospital, about 45 miles and 1.5 hours drive away. Yes another MRI, which was originally scheduled for Monday 12/28 in the early AM. So today is the day. Maybe. Hopefully. No really – third try is a charm! But that is another not so funny story of trying to get a MRI in “relaxed” Hawaii....
And after my MRI sometime when most of you are with your families eating dinner or relaxing, I will let everyone know what my tumor is doing.
Have a great day! And don't forget to smile and savor life!
Mahalo!
I have gotten so many emails from my colleagues mostly at NASA (as well as other Federal Agencies) volunteering their leave time for me under the Voluntary Leave Transfer Program (VLTP), and I want to express my gratitude to all of you!
This has finally been enabled in the NASA WebTads application, thanks to last minute action by Krisstina Willmoth at NASA Ames, and Evelyn Abrams at the NSSC (NASA Shared Services Center), who kindly also volunteered to take questions on this issue at evelyn.p.abrams@nasa.gov or on her phone at 228-813-6045.
This information is timely, especially if you want to donate use-or-loose leave, which I believe has to be done by Monday Jan 4, 2010.
If you are working at another federal agency besides NASA, leave donations will also be possible, and you can do so using OPM630B, which you can get on the web, fill out, and fax to the NSSC at
I have to run off to my next MRI in Waimea North Hawaii Community Hospital, about 45 miles and 1.5 hours drive away. Yes another MRI, which was originally scheduled for Monday 12/28 in the early AM. So today is the day. Maybe. Hopefully. No really – third try is a charm! But that is another not so funny story of trying to get a MRI in “relaxed” Hawaii....
And after my MRI sometime when most of you are with your families eating dinner or relaxing, I will let everyone know what my tumor is doing.
Have a great day! And don't forget to smile and savor life!
Mahalo!
Wednesday, December 23, 2009
Honaunau and the Sacredness of Life
I was at Honaunau Bay the other day for about 5 hours of meditation in the sun, overlooking the coast, and I come here every day now. There are really no beaches here, at least not in the classical sense. The coast is quite rough with black lava rock flows that jut out into the ocean. The place used to be a quiet paradise 15 years ago. It is a bay to rest for Hawaiian Spinner dolphins and various turtles, and it was both a Royal Palace and a “Place of Refuge”. You can look it up on Google of course, and find out more about Hawaii history than you may want to know (let’s not forget that the US used Marines to forcefully annex Hawaii under the usual pretenses).
What is important is that both the Royal Palace grounds and the Place of Refuge (which were built on the 1000 year old lava flows) played a very important role in the history of Hawaii, and are considered sacred places. The “Place of Refuge” was exactly what the name implies, a sacred place with “kahunas” (priests) where people who either broke one of the many taboos of Hawaiian societies (like a commoner looking at the Royals or let their shadows touch the Royal grounds, or women eating men’s food, etc., crimes that always carried the death penalty) or were fleeing any fighting between the various powers could come to and either be pardoned or wait out the fighting. In those days, the purpose of war was elimination of the enemy, children, women and all, just as it was in good old Europe. But unlike Europe, everyone here respected the tradition of the sanctity of the “place of refuge”. Now, both the former Royal Palace Grounds and the “Place of Refuge” at Honaunau are part of the National Park System.
The sad thing is that the beautiful bay now it is on the list of “required” places to visit for Japanese tourists, and as a consequence the place is overrun with divers, snorkelers, and it now sports a boat ramp. I have seen people unload their small leisure boats into the small bay, and then going past Honaunau “Place of Refuge” at high speed. Disgusting, not to mention foolish, considering the noise and the risk for pollution, collisions, etc.
Back to the rough lava rocks. Most have small tidal pools in them, often filled with smallish crabs, juvenile fish, and various sea urchins, etc., with several “blow holes”, where the ocean water has created underground tunnels, and as the waves hit the shore, water often comes out in 10-15 feet high columns.
I remembered something significant that happened in 1981 at a similar place several thousand miles away at the coast of Japan in a place called Katsuura, which is also lava rocks, of which I drew a dozen pictures or so. There too were tidal pools, and in one of the pools my mother and I once found a large (40-50 cm) sea bass of a definite magnificent-dark-reddish color. Now, in most cases there would be not much reason for alarm, but that was different. That tide pool was very warm and very small (like a large kitchen sink), and I have no idea how the large fish got trapped in it. Furthermore, the tide was still going out, and it was clear that the fish was going to have a pretty painful death in there. Also, there were fishermen walking up and down the coast, but somehow none had seen the fish in the pool. Many were carrying bucket loads full of fish.
At that time, I was infatuated with fishing, not that I ever caught anything significantly larger than a sardine, except when once or twice fishing from a boat. But watching the fishing line from a rod is something intensely interesting and calming at the same time, as most fishermen will tell you.
In any case, as I approached the fish in its small tidal pool 5-10 meters away from the ocean’s edge, it got all excited, and tried desperately to hide. I kept still and waited for it to calm down, talking quietly to the fish. Then I approached the tidal pool, and slowly and deliberately caught the fish. The water was warm, at least 30°C, while the ocean water outside was around 15-18°C. I continued to talk to the fish, and it finally stopped struggling. I took it gently out of the water, marveling at its beauty, and then quickly walked to the ocean’s edge. I gently set it free into the water, careful not to fall into the water myself. The fish just stayed in place for what seemed like an eternity, and then suddenly jumped up and out of the water several times, circling in front of my mother and myself, before darting here and there, and then after a final jump disappearing into the depth of the ocean. The anthropomorphic view of course is that the fish was so full of joy, and I will stick that version, for reasons I will explain next.
Since that memorable moment, I never touched a fishing rod again. And when I walk along a pier, or a creek, or the ocean’s edge, fish will congregate around me. It is peculiar sometimes, because a few dozen meters away there will be fishermen with their rods and hooks, and no fish, and I will be in the company of dozens or more large fish that are drawn to me, knowing that I pose no danger to them.
When I lived in Dayton, Ohio, I used to go to a nature preserve (that is a definite and very important other blog story on my spiritual journey), where the large river carps (20-40 cm in length) in the small rivers are quite shy, except they would come to me to the water’s edge and stare at me, or even let me pet them, and minnows would congregate in large numbers wherever I walked, and the water would seem to boil with them, but only where I was.
I was reminded of all of this at Honaunau, because the fish would be there, as were the fishermen, who had nothing in their buckets and would not catch anything. In the meantime I – standing there on the lava flows – could spot several large ocean fish (not that there are too many left). And thus the bonds between fish and myself are still unbroken.
Modern science research has shown that humans are NOT that special in many ways we always thought, especially in terms of feelings of pain or emotions, etc. There is much brain and endocrine research that shows that individual animals not only feel pain, but also recognize other individual animals, and have what we would call definitive preferences for one or another individual animal, all the way down the food chain – from humans, to other mammals, to birds, to other vertebrae like lizards, snakes, amphibians, and fish, and then we know the same is true for octopuses, squids, and even bees and wasps not only recognize other individual bees and wasps, but they also like to “hang out” with their “best friends”. So I suspect that sometime in the near future someone will show that Shakespeare’s plays on love and longing are as relevant to us as they are to a large part of the animal kingdom. Taoist have always recognized that, as did the Buddhists, and that is one reason most are vegetarian (but that is a different story altogether).
We so easily forget history, when Spanish conquistadors and the Catholic Padres happily eradicated 50 million Aztecs in less than a decade (and lets not forget that the original idea of collecting scalps from Indians was a definitive Christian idea), or when the Queen Victoria declared that killing an Australian Aborigine was great act that gave her Majesty “great joy”, and not surprisingly the Pope praised their slaughter.
Human history is full with those kinds of atrocities of humans of almost any culture, and I am not picking on any culture in particular, but many stand out, like the massacre of the Aztecs and Incas, or the concept of slavery mostly of Africans by Europeans and Arabic nations alike, the slaughters of the Spanish Inquisition or the persecution and murder of millions of witches (both women and men, and by Catholic and Protestants alike, by the way) during the 17, 18 and 19th centuries in Europe and America, or the large scale massacres of the 20th century during WWI & WWII including the holocaust, or the massive slaughters of over 60 millions in Soviet Stalin, or in China due to deliberately induced famine and economic mismanagement, or the wars in Vietnam and others that spun off regimes like the Pol Pot regime. It is always the same principle behind it, which is to say that the enemy (however defined) is debased, inferior in some way, portrayed as non-human, or at least not deserving human treatment.
So what does this have to do with my little fish at the edge of the Pacific Ocean?
In light of all the science we have on life, the fundamental question remains in my mind: why do humans hunt, fish, and kill animals deliberately, especially in places where it is totally unnecessary to do so (subsistence fishing and hunting are a somewhat different story)? Why do people get excited about “bagging” a large deer, or a lion, tiger, snake, or a large fish for that matter? First, we do it because we can, or because we like it, or because we feel great about it. Second, to put it in crasser terms, the movie “Natural Born Killer” comes to mind, where killing is all entertainment for the enjoyment of debased instincts of humanity.
But as we move into the 21st century, is this entire recreational killing at all necessary or even justified not only on moral terms but also on scientific terms? My answer is of course a “no”, but everyone has to find that answer for him or herself. One of my friend’s sons wanted to start fishing, so my friend insisted that his son try to put a hook in his mouth, which his father would pulled in, as would be the case with a fish. Well, the son is not too keen on fishing any more. Maybe you should try that too, and see how you feel, when someone puts a hook in your mouth and pulls on the line.
As for people who pose with their “trophy fish”, I can only pity them, because quite frankly in view of modern science, which shows that humans and animals are so closely related, I fail to see much difference between the bloodshed of humans at the hands of other humans (for which there are many penalties, including death imposed by the state, or glories if done in the name of the state), and the totally unnecessary bloodshed we impose on the animal kingdom.
What is important is that both the Royal Palace grounds and the Place of Refuge (which were built on the 1000 year old lava flows) played a very important role in the history of Hawaii, and are considered sacred places. The “Place of Refuge” was exactly what the name implies, a sacred place with “kahunas” (priests) where people who either broke one of the many taboos of Hawaiian societies (like a commoner looking at the Royals or let their shadows touch the Royal grounds, or women eating men’s food, etc., crimes that always carried the death penalty) or were fleeing any fighting between the various powers could come to and either be pardoned or wait out the fighting. In those days, the purpose of war was elimination of the enemy, children, women and all, just as it was in good old Europe. But unlike Europe, everyone here respected the tradition of the sanctity of the “place of refuge”. Now, both the former Royal Palace Grounds and the “Place of Refuge” at Honaunau are part of the National Park System.
The sad thing is that the beautiful bay now it is on the list of “required” places to visit for Japanese tourists, and as a consequence the place is overrun with divers, snorkelers, and it now sports a boat ramp. I have seen people unload their small leisure boats into the small bay, and then going past Honaunau “Place of Refuge” at high speed. Disgusting, not to mention foolish, considering the noise and the risk for pollution, collisions, etc.
Back to the rough lava rocks. Most have small tidal pools in them, often filled with smallish crabs, juvenile fish, and various sea urchins, etc., with several “blow holes”, where the ocean water has created underground tunnels, and as the waves hit the shore, water often comes out in 10-15 feet high columns.
I remembered something significant that happened in 1981 at a similar place several thousand miles away at the coast of Japan in a place called Katsuura, which is also lava rocks, of which I drew a dozen pictures or so. There too were tidal pools, and in one of the pools my mother and I once found a large (40-50 cm) sea bass of a definite magnificent-dark-reddish color. Now, in most cases there would be not much reason for alarm, but that was different. That tide pool was very warm and very small (like a large kitchen sink), and I have no idea how the large fish got trapped in it. Furthermore, the tide was still going out, and it was clear that the fish was going to have a pretty painful death in there. Also, there were fishermen walking up and down the coast, but somehow none had seen the fish in the pool. Many were carrying bucket loads full of fish.
At that time, I was infatuated with fishing, not that I ever caught anything significantly larger than a sardine, except when once or twice fishing from a boat. But watching the fishing line from a rod is something intensely interesting and calming at the same time, as most fishermen will tell you.
In any case, as I approached the fish in its small tidal pool 5-10 meters away from the ocean’s edge, it got all excited, and tried desperately to hide. I kept still and waited for it to calm down, talking quietly to the fish. Then I approached the tidal pool, and slowly and deliberately caught the fish. The water was warm, at least 30°C, while the ocean water outside was around 15-18°C. I continued to talk to the fish, and it finally stopped struggling. I took it gently out of the water, marveling at its beauty, and then quickly walked to the ocean’s edge. I gently set it free into the water, careful not to fall into the water myself. The fish just stayed in place for what seemed like an eternity, and then suddenly jumped up and out of the water several times, circling in front of my mother and myself, before darting here and there, and then after a final jump disappearing into the depth of the ocean. The anthropomorphic view of course is that the fish was so full of joy, and I will stick that version, for reasons I will explain next.
Since that memorable moment, I never touched a fishing rod again. And when I walk along a pier, or a creek, or the ocean’s edge, fish will congregate around me. It is peculiar sometimes, because a few dozen meters away there will be fishermen with their rods and hooks, and no fish, and I will be in the company of dozens or more large fish that are drawn to me, knowing that I pose no danger to them.
When I lived in Dayton, Ohio, I used to go to a nature preserve (that is a definite and very important other blog story on my spiritual journey), where the large river carps (20-40 cm in length) in the small rivers are quite shy, except they would come to me to the water’s edge and stare at me, or even let me pet them, and minnows would congregate in large numbers wherever I walked, and the water would seem to boil with them, but only where I was.
I was reminded of all of this at Honaunau, because the fish would be there, as were the fishermen, who had nothing in their buckets and would not catch anything. In the meantime I – standing there on the lava flows – could spot several large ocean fish (not that there are too many left). And thus the bonds between fish and myself are still unbroken.
Modern science research has shown that humans are NOT that special in many ways we always thought, especially in terms of feelings of pain or emotions, etc. There is much brain and endocrine research that shows that individual animals not only feel pain, but also recognize other individual animals, and have what we would call definitive preferences for one or another individual animal, all the way down the food chain – from humans, to other mammals, to birds, to other vertebrae like lizards, snakes, amphibians, and fish, and then we know the same is true for octopuses, squids, and even bees and wasps not only recognize other individual bees and wasps, but they also like to “hang out” with their “best friends”. So I suspect that sometime in the near future someone will show that Shakespeare’s plays on love and longing are as relevant to us as they are to a large part of the animal kingdom. Taoist have always recognized that, as did the Buddhists, and that is one reason most are vegetarian (but that is a different story altogether).
We so easily forget history, when Spanish conquistadors and the Catholic Padres happily eradicated 50 million Aztecs in less than a decade (and lets not forget that the original idea of collecting scalps from Indians was a definitive Christian idea), or when the Queen Victoria declared that killing an Australian Aborigine was great act that gave her Majesty “great joy”, and not surprisingly the Pope praised their slaughter.
Human history is full with those kinds of atrocities of humans of almost any culture, and I am not picking on any culture in particular, but many stand out, like the massacre of the Aztecs and Incas, or the concept of slavery mostly of Africans by Europeans and Arabic nations alike, the slaughters of the Spanish Inquisition or the persecution and murder of millions of witches (both women and men, and by Catholic and Protestants alike, by the way) during the 17, 18 and 19th centuries in Europe and America, or the large scale massacres of the 20th century during WWI & WWII including the holocaust, or the massive slaughters of over 60 millions in Soviet Stalin, or in China due to deliberately induced famine and economic mismanagement, or the wars in Vietnam and others that spun off regimes like the Pol Pot regime. It is always the same principle behind it, which is to say that the enemy (however defined) is debased, inferior in some way, portrayed as non-human, or at least not deserving human treatment.
So what does this have to do with my little fish at the edge of the Pacific Ocean?
In light of all the science we have on life, the fundamental question remains in my mind: why do humans hunt, fish, and kill animals deliberately, especially in places where it is totally unnecessary to do so (subsistence fishing and hunting are a somewhat different story)? Why do people get excited about “bagging” a large deer, or a lion, tiger, snake, or a large fish for that matter? First, we do it because we can, or because we like it, or because we feel great about it. Second, to put it in crasser terms, the movie “Natural Born Killer” comes to mind, where killing is all entertainment for the enjoyment of debased instincts of humanity.
But as we move into the 21st century, is this entire recreational killing at all necessary or even justified not only on moral terms but also on scientific terms? My answer is of course a “no”, but everyone has to find that answer for him or herself. One of my friend’s sons wanted to start fishing, so my friend insisted that his son try to put a hook in his mouth, which his father would pulled in, as would be the case with a fish. Well, the son is not too keen on fishing any more. Maybe you should try that too, and see how you feel, when someone puts a hook in your mouth and pulls on the line.
As for people who pose with their “trophy fish”, I can only pity them, because quite frankly in view of modern science, which shows that humans and animals are so closely related, I fail to see much difference between the bloodshed of humans at the hands of other humans (for which there are many penalties, including death imposed by the state, or glories if done in the name of the state), and the totally unnecessary bloodshed we impose on the animal kingdom.
Sunday, December 20, 2009
Angiogenesis and Medications
My cancer is not only back (per my MRI from 11/20/09), but it continues to grow unabated. At least that was the first message I got from my last MRI scan on 12/11/09.
One of the characteristics of glioblastoma multiforme (GBM) is that they unpredictable, and continued growth is one of the realities that I have to deal with. One advantage of a classical treatment (surgery, chemotherapy and radiation), is that in many cases the time between the return of tumor growth is often quite a bit longer (typically 10 weeks), but I am not willing to submit to this classical regime because of the side effects, and because in the end it is not curative.
So the reality is that my tumor is right now doubling in volume about every 9-14 days. The MRI on Nov 20 showed that the cancer was about 1.5% of the volume of the original cancer, and it is now somewhere between 5.5 to 8%. Well, you do the math: if I cannot stop the cancer growth, by the end of January I will be where I was at the beginning of October 2009, just before my operation at Columbia University. Not an ominous beginning for 2010.
So what to do, and why is my tumor continuing to grow you may ask? Excellent questions, and frankly I was a bit frustrated by this situation for a few days. But then, after looking into this issue more carefully, I had the usual “Eureka” moment, and so I am as usual excited and all business about it. The reason for my initial frustration was that I thought I was doing all the right things. Well, turns out that I did not, but before I go into that, I need explain one thing here.
While I am in Hawaii and trying to spend as much time meditating and being outside (like hiking along the coast), the reality is that I am very busy every day with working to survive. By working an alternative pathway, I am effectively my own doctor, of course with the wonderful help of my mother, who takes care of cooking and housekeeping here in Hawaii, the help of my oncologist at Columbia University and my local oncologists (including board certified naturopathic-oncologists – who knew that this discipline even existed...), as well as my support network that spans much of North America and people in China and India. While I have all this help, I don’t rely on any one person to make decisions for me, and that means a whole lot of research on my own, helped of course by my family, friends, doctors and several alternative specialists. But the bulk of the work is in my hands.
Why is that? Several reasons:
First, I am in charge of my own health and my own destiny. I firmly believe in the freedom and the duty of patients to do what they think is best for them. My background enables me make these kinds of decisions, or rather I would never feel comfortable to rely on my doctors, unless the odds of the standard treatment were in my favor, which they are clearly not (14% chance to live another 5 years are not terribly good odds). I am determined to survive and prosper, and to keep my quality of life in the process. I know too many GBM survivors who have undergone several courses of surgery, chemo, and radiation, one on his fifth round, barely functional. That is NOT my path.
Second, I don’t just take any alternative treatment: Any method has to have a scientific basis, and it has to have either reliable case studies, or people or their close relatives I can interview who had a similar diagnosis like me (i.e. glioblastoma multiforme), or there must be good trials or epidemiological studies done that I can verify and work out myself. As I wrote before, most of the statistic used by the medical community involves frequency statistics on multi-variable datasets, and that math was developed before the French revolution, and is totally inadequate pseudo-math. The medical community continues not to use Bayesian statistic, a fact that has drawn harsh words from many physicist, including one that I remember by the Nobel Laureate Phil Anderson, who wrote a critical piece in the mid 1980’s about it. But those literature citations are just for starters. Then, I have to find the relevant papers, or studies, download them or request them from doctors or other sources, and read them, understand them, evaluate them, discuss them with my circle of doctors and practitioners and my parents, and only if they stand up to all that scrutiny will I even consider to adopt it as part of my regime.
Third, not only is every person different and reacts differently to various drugs, but also every case of the same cancer is different as I found out. I have a very peculiar case of a glioblastoma multiforme as is clear from the last pathology reports and tests, that are quite unique: (1) a my immune response in my pathological sample from the last operation showed a very strong presence of immune defense inside the tumor as evidenced by CD4 and CD8 markers, (2) an even more spectacular is my cancerous blood supply system as evidenced by p53 markers on the endothelial cells lining the blood supply, and (3) as I wrote last time a particular reaction to the steroid Decadron, which is essential to my well-being and to my survival.
The resulting combination of the three is rather unusual. It means that my immune system as is, is working quite well to the extent that it is probably working too well, but the blood supply that surrounds the tumor keeps the tumor growing. If it would not be for the growth of the blood supply, the tumor would have no chance in continuing to grow.
So what does that mean in both technical and concrete terms? In technical terms, the growth of the blood supply is called “angiogenesis”. In many cases angiogenesis is something you like. For example, if you have heart disease, it often has to do with the lack of capillary blood vessels, and in that case angiogenesis is a wonderful thing to have. In case of a tumor, especially a brain tumor it is the last thing you want, because it sustains the tumor growth, as angiogenesis not only keeps up with cancer growth, by feeding it with nutrients (glucose in this case, which the tumor cells convert by fermentation, not by oxygenation), but also enables its growth. To stop the tumor, I have to find something that fights the angiogenesis, also called “anti-angiogenesis”.
In practical terms, I have to find something fast – really, really fast.
As described in my previous post, the steroid Decadron has some anti-angiogenesis properties for me, at least for some time, and because of the last MRI, I have increased the dose from 1mg per day to 12 mg per day. But Decadron is not something you can take for long times, not at those doses at least, and its positive effects will wear off eventually. Thus, I have spent the last week or so asking my contacts, and researching several anti-angiogenesis drugs. One of the best studied is Avastin, which can destroy or cut off the blood supply system to tumors. However, it is considered a “drug of last defense”, and in 50% of the cases it fails to work suddenly or has unexpected results and side effects, including spreading the cancer to other parts of he brain. What some patients end up with are Christmas-trees in their brains with a half dozen or sometimes more GBM after maybe weeks, months or years after taking the Avastin. If that happens, it is almost always fatal.
I was then alerted to a new approved anti-angiogensis drug that has to be given intravenously for 2-3 hours a day over a period of 60 days. I almost ordered it, had the prescription from the oncologist, and I was about to buy it, for delivery here in Hawaii by Tuesday 12/22. However, after a day of research there were just too many potential fatal consequences, so I decided against it.
My medication list is quite long (all in all about 20 different medications and supplements, taken about 60 different doses every day), and includes of course the typical pharmaceutical drugs like Decadron, Keppra (an anti-seizure medication, not that I believe that I ever had a seizure), and Nexium (to protect my stomach from the effects of Decadron), and a long and changing list of medications derived from natural sources.
One specific drug that I am taking is an approved brain cancer drug (that is by the Chinese FDA) extracted from the oil of the fruits of the South Asian brush Brucea javanica, which contains various components including quassinoids (bruceosides A-F), a group of oil soluble compounds with anti-tumor properties, and most importantly for me, compounds that can penetrate the blood brain boundary (BBB). This drug has a scant English literature, but a very large Chinese literature (several thousand papers), and after several phase III trials, the Chinese FDA approved it in 2005 for the expressed purpose as a brain cancer drug. I just have doubled the dose of this drug.
I also include large amounts of Vitamin D3 – right now at about 50,000 IU/day, while most people may take 400 or 1,000 IU/day. Of course, with all the sun exposure I get, I probably generate another 10,000 to 30,000 IU of Vitamin D3 in my skin. Unlike Vitamin A, vitamin D3 is not toxic at those doses, only if taken at 200,000 IU for 6-12 months or longer. I will be controlling this with regular blood plasma tests. Vitamin D3 has several anti-tumor and anti-angiogenesis properties.
Then there is the German Budwig diet (a mixture of flaxseed oil and cottage cheese that supplies essential Omega-3 fatty acids), discovered by Dr. Budwig, a German scientist, who noted already in the early 1950’s that people with cancer had very low levels of Omega-3 acids, which are essential for cell functioning. The cottage cheese provides casein (a sulfur rich protein), which is synergistic with the flaxseed oil, and enables the Omega-3 fatty acids to become water soluble, and these specific fatty acids makes cell membranes more stable and fluid like. Of note, Omega-3 fatty acids are extremely important because they modulate prostaglandins, which are very active biological substances important to nearly every bodily function. They suppress tumor-promoting prostaglandin E2 and the tumor promoting n-6 fatty acid called arachidonic acid (AA), by increasing prostiglandin E3. It works its magic.
Another drug I take is Sutherlandia OPC a South African drug, whose main component is oleander extract, and has shown significant action against cancer, and disease pathogens like HIV.
The remaining medications and supplements support my immune system and also help in the oxygenation and alkalization of my tumor cells. Alkalization is one way to convert cancer cells to healthy cells again, since it has been long known (by Nobel Laureate Warburg 80 years ago) that cancer cells have pH values around 4.5, and cannot exist at cellular pH > 6.4.
Hawaii is a huge positive change from NYC (the beach is close and the air is fresh and warm), one that allows me really to relax and also laugh out whenever and wherever I want to! Life is so unbelievably comical and ironic!
But as you can probably deduce by now, my work on the medical front is by no means finished, and this continues to be an ongoing saga, and more research and work remains to be done. I cannot relent. My life depends on it, but at least I am smiling now as I write this.
One of the characteristics of glioblastoma multiforme (GBM) is that they unpredictable, and continued growth is one of the realities that I have to deal with. One advantage of a classical treatment (surgery, chemotherapy and radiation), is that in many cases the time between the return of tumor growth is often quite a bit longer (typically 10 weeks), but I am not willing to submit to this classical regime because of the side effects, and because in the end it is not curative.
So the reality is that my tumor is right now doubling in volume about every 9-14 days. The MRI on Nov 20 showed that the cancer was about 1.5% of the volume of the original cancer, and it is now somewhere between 5.5 to 8%. Well, you do the math: if I cannot stop the cancer growth, by the end of January I will be where I was at the beginning of October 2009, just before my operation at Columbia University. Not an ominous beginning for 2010.
So what to do, and why is my tumor continuing to grow you may ask? Excellent questions, and frankly I was a bit frustrated by this situation for a few days. But then, after looking into this issue more carefully, I had the usual “Eureka” moment, and so I am as usual excited and all business about it. The reason for my initial frustration was that I thought I was doing all the right things. Well, turns out that I did not, but before I go into that, I need explain one thing here.
While I am in Hawaii and trying to spend as much time meditating and being outside (like hiking along the coast), the reality is that I am very busy every day with working to survive. By working an alternative pathway, I am effectively my own doctor, of course with the wonderful help of my mother, who takes care of cooking and housekeeping here in Hawaii, the help of my oncologist at Columbia University and my local oncologists (including board certified naturopathic-oncologists – who knew that this discipline even existed...), as well as my support network that spans much of North America and people in China and India. While I have all this help, I don’t rely on any one person to make decisions for me, and that means a whole lot of research on my own, helped of course by my family, friends, doctors and several alternative specialists. But the bulk of the work is in my hands.
Why is that? Several reasons:
First, I am in charge of my own health and my own destiny. I firmly believe in the freedom and the duty of patients to do what they think is best for them. My background enables me make these kinds of decisions, or rather I would never feel comfortable to rely on my doctors, unless the odds of the standard treatment were in my favor, which they are clearly not (14% chance to live another 5 years are not terribly good odds). I am determined to survive and prosper, and to keep my quality of life in the process. I know too many GBM survivors who have undergone several courses of surgery, chemo, and radiation, one on his fifth round, barely functional. That is NOT my path.
Second, I don’t just take any alternative treatment: Any method has to have a scientific basis, and it has to have either reliable case studies, or people or their close relatives I can interview who had a similar diagnosis like me (i.e. glioblastoma multiforme), or there must be good trials or epidemiological studies done that I can verify and work out myself. As I wrote before, most of the statistic used by the medical community involves frequency statistics on multi-variable datasets, and that math was developed before the French revolution, and is totally inadequate pseudo-math. The medical community continues not to use Bayesian statistic, a fact that has drawn harsh words from many physicist, including one that I remember by the Nobel Laureate Phil Anderson, who wrote a critical piece in the mid 1980’s about it. But those literature citations are just for starters. Then, I have to find the relevant papers, or studies, download them or request them from doctors or other sources, and read them, understand them, evaluate them, discuss them with my circle of doctors and practitioners and my parents, and only if they stand up to all that scrutiny will I even consider to adopt it as part of my regime.
Third, not only is every person different and reacts differently to various drugs, but also every case of the same cancer is different as I found out. I have a very peculiar case of a glioblastoma multiforme as is clear from the last pathology reports and tests, that are quite unique: (1) a my immune response in my pathological sample from the last operation showed a very strong presence of immune defense inside the tumor as evidenced by CD4 and CD8 markers, (2) an even more spectacular is my cancerous blood supply system as evidenced by p53 markers on the endothelial cells lining the blood supply, and (3) as I wrote last time a particular reaction to the steroid Decadron, which is essential to my well-being and to my survival.
The resulting combination of the three is rather unusual. It means that my immune system as is, is working quite well to the extent that it is probably working too well, but the blood supply that surrounds the tumor keeps the tumor growing. If it would not be for the growth of the blood supply, the tumor would have no chance in continuing to grow.
So what does that mean in both technical and concrete terms? In technical terms, the growth of the blood supply is called “angiogenesis”. In many cases angiogenesis is something you like. For example, if you have heart disease, it often has to do with the lack of capillary blood vessels, and in that case angiogenesis is a wonderful thing to have. In case of a tumor, especially a brain tumor it is the last thing you want, because it sustains the tumor growth, as angiogenesis not only keeps up with cancer growth, by feeding it with nutrients (glucose in this case, which the tumor cells convert by fermentation, not by oxygenation), but also enables its growth. To stop the tumor, I have to find something that fights the angiogenesis, also called “anti-angiogenesis”.
In practical terms, I have to find something fast – really, really fast.
As described in my previous post, the steroid Decadron has some anti-angiogenesis properties for me, at least for some time, and because of the last MRI, I have increased the dose from 1mg per day to 12 mg per day. But Decadron is not something you can take for long times, not at those doses at least, and its positive effects will wear off eventually. Thus, I have spent the last week or so asking my contacts, and researching several anti-angiogenesis drugs. One of the best studied is Avastin, which can destroy or cut off the blood supply system to tumors. However, it is considered a “drug of last defense”, and in 50% of the cases it fails to work suddenly or has unexpected results and side effects, including spreading the cancer to other parts of he brain. What some patients end up with are Christmas-trees in their brains with a half dozen or sometimes more GBM after maybe weeks, months or years after taking the Avastin. If that happens, it is almost always fatal.
I was then alerted to a new approved anti-angiogensis drug that has to be given intravenously for 2-3 hours a day over a period of 60 days. I almost ordered it, had the prescription from the oncologist, and I was about to buy it, for delivery here in Hawaii by Tuesday 12/22. However, after a day of research there were just too many potential fatal consequences, so I decided against it.
My medication list is quite long (all in all about 20 different medications and supplements, taken about 60 different doses every day), and includes of course the typical pharmaceutical drugs like Decadron, Keppra (an anti-seizure medication, not that I believe that I ever had a seizure), and Nexium (to protect my stomach from the effects of Decadron), and a long and changing list of medications derived from natural sources.
One specific drug that I am taking is an approved brain cancer drug (that is by the Chinese FDA) extracted from the oil of the fruits of the South Asian brush Brucea javanica, which contains various components including quassinoids (bruceosides A-F), a group of oil soluble compounds with anti-tumor properties, and most importantly for me, compounds that can penetrate the blood brain boundary (BBB). This drug has a scant English literature, but a very large Chinese literature (several thousand papers), and after several phase III trials, the Chinese FDA approved it in 2005 for the expressed purpose as a brain cancer drug. I just have doubled the dose of this drug.
I also include large amounts of Vitamin D3 – right now at about 50,000 IU/day, while most people may take 400 or 1,000 IU/day. Of course, with all the sun exposure I get, I probably generate another 10,000 to 30,000 IU of Vitamin D3 in my skin. Unlike Vitamin A, vitamin D3 is not toxic at those doses, only if taken at 200,000 IU for 6-12 months or longer. I will be controlling this with regular blood plasma tests. Vitamin D3 has several anti-tumor and anti-angiogenesis properties.
Then there is the German Budwig diet (a mixture of flaxseed oil and cottage cheese that supplies essential Omega-3 fatty acids), discovered by Dr. Budwig, a German scientist, who noted already in the early 1950’s that people with cancer had very low levels of Omega-3 acids, which are essential for cell functioning. The cottage cheese provides casein (a sulfur rich protein), which is synergistic with the flaxseed oil, and enables the Omega-3 fatty acids to become water soluble, and these specific fatty acids makes cell membranes more stable and fluid like. Of note, Omega-3 fatty acids are extremely important because they modulate prostaglandins, which are very active biological substances important to nearly every bodily function. They suppress tumor-promoting prostaglandin E2 and the tumor promoting n-6 fatty acid called arachidonic acid (AA), by increasing prostiglandin E3. It works its magic.
Another drug I take is Sutherlandia OPC a South African drug, whose main component is oleander extract, and has shown significant action against cancer, and disease pathogens like HIV.
The remaining medications and supplements support my immune system and also help in the oxygenation and alkalization of my tumor cells. Alkalization is one way to convert cancer cells to healthy cells again, since it has been long known (by Nobel Laureate Warburg 80 years ago) that cancer cells have pH values around 4.5, and cannot exist at cellular pH > 6.4.
Hawaii is a huge positive change from NYC (the beach is close and the air is fresh and warm), one that allows me really to relax and also laugh out whenever and wherever I want to! Life is so unbelievably comical and ironic!
But as you can probably deduce by now, my work on the medical front is by no means finished, and this continues to be an ongoing saga, and more research and work remains to be done. I cannot relent. My life depends on it, but at least I am smiling now as I write this.
Wednesday, December 9, 2009
Another transition...
After a long break, I am posting some updates on my status.
First off some bad news: my glioblastoma multiforme (GBM) cancer came back in a truly remarkable fashion. Until Monday November 16, I had been on the steroid decadron, and was tapering off at 0.5mg twice a day. That day (and per advice from my neuro-oncologist) I stopped the decadron, and on the morning of Wednesday Nov 18, I started to have the typical symptoms of the dreaded tumor: namely tingling and problems with my proprioception, which in my case meant that my left pinky and ring fingers have problems determining exactly where each joint is located. I was not taking any chances, and my neuro-oncologist Dr. Rose Lai from Columbia ordered the appropriate contrast enhanced perfusion MRI scan on Friday November 20, 2009. After the MRI, my father and I met with Dr. Lai, and after a quick physical exam of my neurological symptoms, she showed us the scans: a recurrence of the glioblastoma multiforme, at exactly the same spot as before, but still small with a cross-section of 15mm x 18mm, which implies that it is still only about 1/30 of the mass of the tumor that had been removed on October 5.
The following Tuesday, my parents and I met with Dr. Jeff Bruce (who as you may recall did my first brain surgery), and he kindly offered me a second operation, because it would lead to a new debulking of the tumor and could help with any follow-up treatment. It would be quite easy for him to perform a second surgery, since he did the first surgery. He estimated a three–day hospital stay and a 7-10 day recovery at home after that. That could be followed by chemo and radiation regime (which should be noted was by no means a precondition for a second operation). After much consideration and discussions with my parents over the Thanksgiving weekend, I decided against a second operation, a decision that was not made lightly, but for which we have very good reasons.
The first reason was that a second operation does involve risks: including infections, and about a 1-2% chance of permanent damage. However, even assuming that everything would work perfectly well with the surgery as it did the first time, there is the issue of staying in the acute care unit again, in which case I would probably hire my own full-time nurse (at least at night), because I have no intention to go through the nightmares of the last acute care stay.
Second, any brain surgery and hospital stay would put me back a few weeks (at least 3-4 weeks for any non-conventional treatment, because the surgery and hospital stay would completely mess up my alternative treatments).
Ahh, the alternative treatments! After having finally moved into the small 1BR apartment in Flushing, NY it took us quite some time to get the treatment regime in place, because the first surgery was unexpected after all, and I had nothing planned except my work with Frank Huo, my Chinese Yuanji master. Thus, when I came to my new apartment in Flushing, it took me (and my parents) several weeks to put together what I thought was an effective treatment plan and medication regimen. However, that meant that in most cases, I was less than 2 weeks into using alternative treatments (that list will be a separate blog entry), and most of those alternative treatment options are known to take at least 4-6 weeks to start showing results. Thus, going under the knife again for Dr. Bruce to work inside my head would be like saying: “I am giving up on alternative regiments, even BEFORE they were supposed to start showing results”, something I was and I am still not willing to do, unless it would be a medical emergency, which it is not.
Of course the interesting part here (as the careful reader probably noted) is that the neurological symptoms of the tumor returned AFTER I stopped the steroid decadron. It was the second time, and for what Dr. Lai and I agree probably not a coincidence, but I don’t have the time to go into the details here.
The third reason for declining surgery at this time was that Frank introduced me to the next level (Level II) of the Yuanji Energy system, which requires daily meditation and specific exercises outside in direct sunlight, not a common occurrence in NYC after Thanksgiving. In most cases, meditation in general is something you do inside, in the stillness of a room, or in the serenity of a church or temple, or maybe in the garden under the shadows of the trees. But meditating for several hours facing the blazing sun? As I will explain at some other time, my next level Yuanji training requires just that: internal cultivation while facing the sun (and it gets a bit more complicated). Thus, the approaching New York winter and weather changes made it totally impossible to sit outside, without catching a cold – that is, if you are lucky enough to catch some direct sunlight in NYC in the winter.
The final reason for declining surgery now was that our 1BR/1BA apartment in NYC (which was intended as a temporary dig for myself) is very, very tight for three adults. It is great for a single person and even adequate for a couple, but for three adults? My parents and I were all suffering from the city and its nervousness, getting on each other’s nerves, in part because of the peculiarities of this small 1BR apartment. The place is quiet most of the time being located on the top floor and located on corner of the building. However, a few times at 2am or so some dude decides to park his car in front of someone else’s driveway, and we get what I call a “Flushing standoff”, which means a lot of horn blowing, screaming in Chinese or Korean – but fortunately no guns – and only ends when the offending side finally decides after 40 minutes to move their car from one driveway to another, and only after a tow truck shows up. Quite a spectacle, which comes as a freebee with the apartment :-)
So what are the “peculiarities” with a 1BR besides the occasional standoff outside you may ask? For one it is tiny, as this apartment is in a typical NYC six-story condo building that was built in 1955. That means a bedroom that won’t fit even two full-sized beds, an original bathroom (without a fan) which is a bit larger than a twin-sized bed, doors that have so much paint on that none of the doors close, including the ones to the three closets and with the noted exception for the triple-locked front door, or if they do with a considerable sharp noise, and thus I suspect are the original idea for the “open space layout – who needs doors anyhow” kind of idea. And then there are the baseboards that stop short half-inch above the top of the hardwood flooring – which is quite gorgeous by the way. The flooring has the annoying habit to creak inside the corridor that connects the bedroom to the rest of the apartment – maybe to prevent ninjas to sneak up on you – thus making quiet meditation almost impossible. Because of the age and the construction of this building, there are cockroaches all over the place, and my mother caught a few crawling over her face at night, again a common NYC experience. Another issue (or charm if you like cold air) is circulating cold air, which appears at will between the floor and the baseboards on the walls (remember the half-inch gap?). Maybe we should have bought rolls of toilet paper to plug all the air leaks, but NY being NY has a brutal long winter. Now, all of that is quite common in NYC I hear, and nothing to get excited about. That is probably true, and in summer the dreaded cold circulating air suddenly becomes a free bonus, but never mind... It is getting awfully cold in NYC. And then there is a leak on the roof, and so chunks of the plaster on the ceiling are starting to peel off just over my bed. But this is part of the NYC charm of course :-)
Talking about charm – or rather the lack thereof: we have some smoking neighbor, and the cigarette stink (which seeps through walls and exhaust vents) is something I am not willing to put up with. New York is so far behind the smoking curve. Also, it seems half the population of Flushing is only interested in eating, smoking, and spending their time in spas and beauty parlors. There are more beauty parlors (hey, how ‘bout a permanent tattooed red lip?), banks, dime stores, and groceries stores per capita in Flushing than I have ever seen, while there is not a single decent bookstore there, and no organic food either. Organic food is really important for me, especially in my condition. Smoking, eating, and at the same time beauty–obsessed people. If it would be just the eating and the beauty obsession, I would guess “Hollywood”, but here “schizophrenic” is the word that comes to mind.
The reality is of course much more complex. Flushing is a very peculiar place, with its rich cultural history, one that I was glad to call home for a few months. It always used to be a diverse place with the oldest American Quaker house, build 300 years ago, later a Jewish quarter and an entertainment district, and for a time Flushing was the east coast center of the film industry with people like Bob Hope and the Marx brothers performing here in vaudeville palaces. Now, it has a predominantly Chinese, Korean and Indian culture, a cash economy, with underworld hidden backroom gambling halls, drug dens, and brothels, with people who live lives of quiet or open despair (thanks to my friend Gina for pointing this out), like the elderly lonely Chinese neighbor, who’s children brought him over from the mainland, whose wife died a year back, and who of course does not speak a word of English. And as always, amid of all this human chaos you see families with their children in schools, especially Chinese schools (I am sure there are others), people who work hard and make an honest living.
But I digress. The changing cold weather in late November did not help, and in fact, my father got a mild form of the flu, which he passed on to me in the confines of our place, and the flu is the LAST thing that you want. It was something that depressed my immune system and in my case probably lead to renewed tumor growth.
So after deciding against another surgery (and with a small recurrent tumor inside my brain), we all decided that we needed a change that would reduce our stress, support my healing 100%, and that I had to get to a place that would offer the right climate, the right spirit, and the right “mana”. I had long decided that the best place to go for that was Hawaii, more specifically the Kona coast of Hawai’i (i.e. the Big Island of Hawaii).
I have many fond memories of the Kona coast. They include my personally deepest decompression scuba dive there to 267 feet for 10 minutes, followed by about 2 hours of helium-enriched decompression diving – think of me as a diving Donald Duck sounding guy :-), while seeing two ginormous manta rays at about 240 feet below the surface, which my dive instructor and myself estimated at about 17 and 25 foot “wingspan”. They circulated us for a few rounds, curious to see strange bubbly folks at such depth. The visibility of the water near Kona is as far as I could ascertain the best in the world, with visibility exceeding 500 meters (there are NAVY photos to back up that claim). And then of course there is “THE dive spot” that does not belong on a blog :-)
I also remember an astronomical conference in Kona in January of 1998, when the El Nino caused some of the most spectacular viewing conditions on top of Mauna Kea. One night during that conference, some of us drove up to the mid-station to acclimatize, and then went on to the top for observations on the Caltech Submillimeter Observatory (CSO), and I still remember being able to see stars with naked eye of approximate 9.5 magnitude, from Polaris (which was hard to spot among all its companions), the gorgeous Andromeda nebula (which is almost 200 arcminutes in length), all the way down to the Southern Cross – even low-contrast planetary nebulae near the plane of the Milky Way were visible in all their intricate red-green-blue-white glory; and all that without supplemental oxygen. That night in January 1998, the total measured water column density was less than 0.4mm, which is extremely low as any astronomer will tell you, and the sights that night are one of the things I will never forget.
I had already looked at rental houses near Kailua-Kona for the months of December and January back in October. The prices are quite ridiculous at about $200-350 a night for most rentals that I looked at, especially considering the huge surplus of rentals, except for a small 10-day period around X-mas and New Year.
So on December 3, 2009, after hurried preparations and consultation with my doctors at Columbia University – and thanks to Dr. Rose Lai for the referrals to local doctors in Kona – and the usual light packing, my mother and I moved from Flushing to Kona, into a much more spacious house on the Kona coast of a family friend.
It seems that this part of the island has all but one oncologist, and no neurologists. That means that I am keeping in touch with the folks back at Columbia. And perhaps it means that people in Kona are just too easy-going to get something as awful as glioblastomas?
In any case, my mother’s and my stress levels have decreased considerably over the past 5-6 days, and as opposed to NYC, the place has organic food aplenty (still not as good as the Bay Area). The home-grown bananas actually TASTE fantastic!
So I have been busy adjusting to the new lifestyle here, and meditating very easily and for long stretches of time. Yesterday, I spent 3 hours sitting outside meditating under the Hawaiian sun with a gallon of water next to me, and after sunset spent even more time meditating inside. Time is of the essence, and I have none to spare, at least not until the tumor starts to shrink.
First off some bad news: my glioblastoma multiforme (GBM) cancer came back in a truly remarkable fashion. Until Monday November 16, I had been on the steroid decadron, and was tapering off at 0.5mg twice a day. That day (and per advice from my neuro-oncologist) I stopped the decadron, and on the morning of Wednesday Nov 18, I started to have the typical symptoms of the dreaded tumor: namely tingling and problems with my proprioception, which in my case meant that my left pinky and ring fingers have problems determining exactly where each joint is located. I was not taking any chances, and my neuro-oncologist Dr. Rose Lai from Columbia ordered the appropriate contrast enhanced perfusion MRI scan on Friday November 20, 2009. After the MRI, my father and I met with Dr. Lai, and after a quick physical exam of my neurological symptoms, she showed us the scans: a recurrence of the glioblastoma multiforme, at exactly the same spot as before, but still small with a cross-section of 15mm x 18mm, which implies that it is still only about 1/30 of the mass of the tumor that had been removed on October 5.
The following Tuesday, my parents and I met with Dr. Jeff Bruce (who as you may recall did my first brain surgery), and he kindly offered me a second operation, because it would lead to a new debulking of the tumor and could help with any follow-up treatment. It would be quite easy for him to perform a second surgery, since he did the first surgery. He estimated a three–day hospital stay and a 7-10 day recovery at home after that. That could be followed by chemo and radiation regime (which should be noted was by no means a precondition for a second operation). After much consideration and discussions with my parents over the Thanksgiving weekend, I decided against a second operation, a decision that was not made lightly, but for which we have very good reasons.
Second, any brain surgery and hospital stay would put me back a few weeks (at least 3-4 weeks for any non-conventional treatment, because the surgery and hospital stay would completely mess up my alternative treatments).
Ahh, the alternative treatments! After having finally moved into the small 1BR apartment in Flushing, NY it took us quite some time to get the treatment regime in place, because the first surgery was unexpected after all, and I had nothing planned except my work with Frank Huo, my Chinese Yuanji master. Thus, when I came to my new apartment in Flushing, it took me (and my parents) several weeks to put together what I thought was an effective treatment plan and medication regimen. However, that meant that in most cases, I was less than 2 weeks into using alternative treatments (that list will be a separate blog entry), and most of those alternative treatment options are known to take at least 4-6 weeks to start showing results. Thus, going under the knife again for Dr. Bruce to work inside my head would be like saying: “I am giving up on alternative regiments, even BEFORE they were supposed to start showing results”, something I was and I am still not willing to do, unless it would be a medical emergency, which it is not.
Of course the interesting part here (as the careful reader probably noted) is that the neurological symptoms of the tumor returned AFTER I stopped the steroid decadron. It was the second time, and for what Dr. Lai and I agree probably not a coincidence, but I don’t have the time to go into the details here.
The third reason for declining surgery at this time was that Frank introduced me to the next level (Level II) of the Yuanji Energy system, which requires daily meditation and specific exercises outside in direct sunlight, not a common occurrence in NYC after Thanksgiving. In most cases, meditation in general is something you do inside, in the stillness of a room, or in the serenity of a church or temple, or maybe in the garden under the shadows of the trees. But meditating for several hours facing the blazing sun? As I will explain at some other time, my next level Yuanji training requires just that: internal cultivation while facing the sun (and it gets a bit more complicated). Thus, the approaching New York winter and weather changes made it totally impossible to sit outside, without catching a cold – that is, if you are lucky enough to catch some direct sunlight in NYC in the winter.
The final reason for declining surgery now was that our 1BR/1BA apartment in NYC (which was intended as a temporary dig for myself) is very, very tight for three adults. It is great for a single person and even adequate for a couple, but for three adults? My parents and I were all suffering from the city and its nervousness, getting on each other’s nerves, in part because of the peculiarities of this small 1BR apartment. The place is quiet most of the time being located on the top floor and located on corner of the building. However, a few times at 2am or so some dude decides to park his car in front of someone else’s driveway, and we get what I call a “Flushing standoff”, which means a lot of horn blowing, screaming in Chinese or Korean – but fortunately no guns – and only ends when the offending side finally decides after 40 minutes to move their car from one driveway to another, and only after a tow truck shows up. Quite a spectacle, which comes as a freebee with the apartment :-)
So what are the “peculiarities” with a 1BR besides the occasional standoff outside you may ask? For one it is tiny, as this apartment is in a typical NYC six-story condo building that was built in 1955. That means a bedroom that won’t fit even two full-sized beds, an original bathroom (without a fan) which is a bit larger than a twin-sized bed, doors that have so much paint on that none of the doors close, including the ones to the three closets and with the noted exception for the triple-locked front door, or if they do with a considerable sharp noise, and thus I suspect are the original idea for the “open space layout – who needs doors anyhow” kind of idea. And then there are the baseboards that stop short half-inch above the top of the hardwood flooring – which is quite gorgeous by the way. The flooring has the annoying habit to creak inside the corridor that connects the bedroom to the rest of the apartment – maybe to prevent ninjas to sneak up on you – thus making quiet meditation almost impossible. Because of the age and the construction of this building, there are cockroaches all over the place, and my mother caught a few crawling over her face at night, again a common NYC experience. Another issue (or charm if you like cold air) is circulating cold air, which appears at will between the floor and the baseboards on the walls (remember the half-inch gap?). Maybe we should have bought rolls of toilet paper to plug all the air leaks, but NY being NY has a brutal long winter. Now, all of that is quite common in NYC I hear, and nothing to get excited about. That is probably true, and in summer the dreaded cold circulating air suddenly becomes a free bonus, but never mind... It is getting awfully cold in NYC. And then there is a leak on the roof, and so chunks of the plaster on the ceiling are starting to peel off just over my bed. But this is part of the NYC charm of course :-)
Talking about charm – or rather the lack thereof: we have some smoking neighbor, and the cigarette stink (which seeps through walls and exhaust vents) is something I am not willing to put up with. New York is so far behind the smoking curve. Also, it seems half the population of Flushing is only interested in eating, smoking, and spending their time in spas and beauty parlors. There are more beauty parlors (hey, how ‘bout a permanent tattooed red lip?), banks, dime stores, and groceries stores per capita in Flushing than I have ever seen, while there is not a single decent bookstore there, and no organic food either. Organic food is really important for me, especially in my condition. Smoking, eating, and at the same time beauty–obsessed people. If it would be just the eating and the beauty obsession, I would guess “Hollywood”, but here “schizophrenic” is the word that comes to mind.
The reality is of course much more complex. Flushing is a very peculiar place, with its rich cultural history, one that I was glad to call home for a few months. It always used to be a diverse place with the oldest American Quaker house, build 300 years ago, later a Jewish quarter and an entertainment district, and for a time Flushing was the east coast center of the film industry with people like Bob Hope and the Marx brothers performing here in vaudeville palaces. Now, it has a predominantly Chinese, Korean and Indian culture, a cash economy, with underworld hidden backroom gambling halls, drug dens, and brothels, with people who live lives of quiet or open despair (thanks to my friend Gina for pointing this out), like the elderly lonely Chinese neighbor, who’s children brought him over from the mainland, whose wife died a year back, and who of course does not speak a word of English. And as always, amid of all this human chaos you see families with their children in schools, especially Chinese schools (I am sure there are others), people who work hard and make an honest living.
But I digress. The changing cold weather in late November did not help, and in fact, my father got a mild form of the flu, which he passed on to me in the confines of our place, and the flu is the LAST thing that you want. It was something that depressed my immune system and in my case probably lead to renewed tumor growth.
So after deciding against another surgery (and with a small recurrent tumor inside my brain), we all decided that we needed a change that would reduce our stress, support my healing 100%, and that I had to get to a place that would offer the right climate, the right spirit, and the right “mana”. I had long decided that the best place to go for that was Hawaii, more specifically the Kona coast of Hawai’i (i.e. the Big Island of Hawaii).
I have many fond memories of the Kona coast. They include my personally deepest decompression scuba dive there to 267 feet for 10 minutes, followed by about 2 hours of helium-enriched decompression diving – think of me as a diving Donald Duck sounding guy :-), while seeing two ginormous manta rays at about 240 feet below the surface, which my dive instructor and myself estimated at about 17 and 25 foot “wingspan”. They circulated us for a few rounds, curious to see strange bubbly folks at such depth. The visibility of the water near Kona is as far as I could ascertain the best in the world, with visibility exceeding 500 meters (there are NAVY photos to back up that claim). And then of course there is “THE dive spot” that does not belong on a blog :-)
I also remember an astronomical conference in Kona in January of 1998, when the El Nino caused some of the most spectacular viewing conditions on top of Mauna Kea. One night during that conference, some of us drove up to the mid-station to acclimatize, and then went on to the top for observations on the Caltech Submillimeter Observatory (CSO), and I still remember being able to see stars with naked eye of approximate 9.5 magnitude, from Polaris (which was hard to spot among all its companions), the gorgeous Andromeda nebula (which is almost 200 arcminutes in length), all the way down to the Southern Cross – even low-contrast planetary nebulae near the plane of the Milky Way were visible in all their intricate red-green-blue-white glory; and all that without supplemental oxygen. That night in January 1998, the total measured water column density was less than 0.4mm, which is extremely low as any astronomer will tell you, and the sights that night are one of the things I will never forget.
I had already looked at rental houses near Kailua-Kona for the months of December and January back in October. The prices are quite ridiculous at about $200-350 a night for most rentals that I looked at, especially considering the huge surplus of rentals, except for a small 10-day period around X-mas and New Year.
So on December 3, 2009, after hurried preparations and consultation with my doctors at Columbia University – and thanks to Dr. Rose Lai for the referrals to local doctors in Kona – and the usual light packing, my mother and I moved from Flushing to Kona, into a much more spacious house on the Kona coast of a family friend.
It seems that this part of the island has all but one oncologist, and no neurologists. That means that I am keeping in touch with the folks back at Columbia. And perhaps it means that people in Kona are just too easy-going to get something as awful as glioblastomas?
In any case, my mother’s and my stress levels have decreased considerably over the past 5-6 days, and as opposed to NYC, the place has organic food aplenty (still not as good as the Bay Area). The home-grown bananas actually TASTE fantastic!
So I have been busy adjusting to the new lifestyle here, and meditating very easily and for long stretches of time. Yesterday, I spent 3 hours sitting outside meditating under the Hawaiian sun with a gallon of water next to me, and after sunset spent even more time meditating inside. Time is of the essence, and I have none to spare, at least not until the tumor starts to shrink.
Monday, November 9, 2009
My mother in her own words
This post about the events from 9/29/09 until the day of surgery on 10/5/09 as written by my dear mother Hisako Matsubara:
“I fell and hit my head in the bathroom”, Mino’s screaming voice through the phone from his hotel room in New York made us shudder. It was September 29, 2009 at 2:30 AM California time.
“Mino, Mino, please stay calm. Lie down. I’m coming… I’m getting on the next available flight to New York… call Frank for help…”
“Damn it, Frank doesn’t pick up his phone. I called 911”
Friedemann was already frantically searching for a seat on the earliest possible flight to New York.
The 911 driver called. “His vitals are okay. We’ll bring him to the Queens Hospital.”
His vitals are okay, are okay, are okay, but what about his brain tumor after the fall? I was running around in the house collecting things to take and throwing them into my small travel bag. Friedemann found out that there was no seat available for non-stop flights to JFK or LaGuardia, even in First Class.
Twelve hours later, after zigzagging across the continent, I arrived in LaGuardia. Now what? Where is Mino? I called Friedemann. No answer. Called Frank. No answer. Called Shawn: “Mino is sleeping in the hotel”.
My cell phone went dead.
I realized that I didn’t know the address of the hotel. Early on Mino wanted to move out of the hotel into an apartment. Repeatedly he had told us he could handle everything by himself… we should not worry.
We had been worried for the past four weeks. Uncertainties are killing us.
I digged through my travel bag… all emails Mino had sent us from his hotel in Flushing, NY, but no address of the hotel… my reading glasses, my credit card, my California ID, $60 in cash, somehow two toothbrushes, one teabag, my cell phone, and a fat address book with Japanese, American, German, Swiss, French, and British addresses, but no hotel where Mino is sleeping. Faintly I remembered it was close to the LaGuardia airport.
I got into a taxi. The driver shook his head and started driving full speed.
“You know Lexington Marco LaGuardia hotel?”
“No.”
“Where are we going?”
“Ain’t know nothing.”
“Nothing?! Stop at the next hotel on the way, please”.
“Hah? Hotel? Which hotel?”
“That one over there… it says”
“Where?”
“Here. Stop. Wait.”
“Heh?”
I went into the hotel lobby, got the address of the Lexington Marco LaGuardia.
The taxi driver set out to find it after cruising around in Flushing for what seemed to me an endlessly long time.
“Mino is staying in your hotel. What is his room number?” I asked the Marco receptionist.
She smiled: “Room 1811.”
I knocked at the door of 1811. No answer. I knocked harder and harder. No answer. I knocked again: “Mino, Minochan, I’m here.” I jumped back into the elevator down to the receptionist. “Mino doesn’t answer… he had a serious accident early this morning…”
“…I heard about that,” the receptionist smiled.
“…I’m Mino’s mother… just came from California… give me a second key.”
“Sorry, I can’t give anybody a second key.”
“…but I’m his mother…”
“Sorry, I’m not allowed to give you the key. He must first call us and give us permission…”
“…but he may be in a coma, after the fall… I need to see him.”
“Sorry, I can’t help you, unless he calls me and gives me permission.”
“…but he has a brain tumor and hit his head this morning. 911 came.”
“I heard it and 911 brought him back too.”
“… so give me the key.”
The woman smiled: “Our hotel policy is not to give a second room key to anybody, unless the occupant calls me.”
“… but don’t you see, he may be in a coma. I’m his mother. How can Mino call you, if he is in a coma? He needs help. This is an emergency.”
“Sorry. Hotel policy is hotel policy… I didn’t make the rules and I can’t change them”, the receptionist never stopped smiling.
“Can I talk to the manager?”
“Sorry, he is not here.”
“Anybody else?”
Out came another woman. She said the same thing but then added: “There is a Chinese guy who has a second key. You should ask him to let you in.”
“Mino has been staying in your hotel for a month. What kind of treatment is this?”
The two women smiled. They let me use the hotel phone to call Frank.
No answer. I called his number again and again. At last he picked up. It took him half an hour to arrive at the hotel, while I was sitting in the lobby, back to the ever blaring TV screen high up on the wall, imagining Mino lying in a coma.
When Frank Huo, the TCM Practitioner, stepped into the lobby, I almost jumped on him, forgetting all etiquette, which is so engrained into the formality of meeting someone important for the first time. Frank was a short, muscular man in his mid-forties, wearing a bright red jacket.
“Oh, Mino is okay. Queens Hospital didn’t find any bleeding in his head after the fall. He is doing fine”, he said.
When Frank opened the door to Mino’s room and I tiptoed in, I saw Mino stretched out in his king-size bed, breathing lightly, pale, almost gray. His stubbly beard made him look different, strange and aged. The left side of his face distorted and the left corner of his lips drooping. I put my arm around him.
“Aaaa, Sayachan”, he uttered, his eyes barely open. He started to cry.
“Minochan, I’m here. Friedemann comes tomorrow. We are both going to be here.”
I felt his body relaxing and he slid back into slumber, tears still in the corners of his eyes.
Something deeply disturbing, something very wrong. I started to shiver. As soon as Friedemann comes, we must take Mino to the Columbia Medical Center. If not, something terrible will happen.
Frank was standing behind me and said “there are many Chinese restaurants around here, if you haven’t had dinner”
Dinner? I had no breakfast, no lunch, no dinner. A lump was stuck in my throat. I tried to breathe deeply, slowly, 100 times, 1000 times, and started to hum in the planes all the songs I remembered form my childhood, and adolescence in Japan, all the arias and melodies from my adult life in Europe and America. I was still humming when the plane landed in LaGuardia.
I thanked Frank, and lied down besides Mino in his king-sized bed and watched him breathe.
In the afternoon of Oct. 1, Friedemann and I literally dragged Mino from his bed to the car. He could barely walk. All morning he slept. When we tried to wake him up to go to the Columbia University Medical Center emergency unit, he kept saying: “I want to sleep. Leave me alone”
Just looking at Mino we could feel that his condition was very grave. We forced ourselves not to respect his wish of leaving him alone. We could have called 911 early in the morning, but 911 was obliged to bring the caller to the closest hospital, that primitive Queens Hospital Emergency unit again. We were determined to go to Dr. Jeffrey Bruce, the Co-director of the Brain Tumor Center at Columbia University Medical Center, who was referred to us by Dr. Dan Wecht from Pittsburgh.
On the way to the hospital, Dr. Wecht’s nurse, Kathy Ross called. Mino woke up instantly and spoke clearly and decisively like a CEO. As soon as the phone call was over, he fell asleep again on this father’s shoulder. The contrast between his faltering mind and his voice a moment ago was striking. Looking at his miserable condition, I could hardly believe that this same person could speak with full of energy. The same phenomenon would repeat in the course of the day.
Emergency unit does not mean emergency at all. After filling our paper and more papers, going from one nurse to the next, answering the same questions over and over again, and getting the blood pressure and temperature measured countless times, Mino was finally laid down on a bed from his wheelchair – a kind of promotion due to the severity of his condition. He brought with him all the medical records together with the past scans of the MRI in his backpack, which he had, staggering to his feet, asked his father to carry.
In the Emergency Unit, the doctors were extremely attentive and kind, answering questions Mino posed. Very often they became so fascinated with his comments that they started exchanging opinions with him, like researchers in the lab. Mino showed no trace of fatigue or sickness. Alert, sharp, and even cheerful, like in his normal days.
However, as soon as we were left alone, before the next doctor came, Mino fell asleep. He looked weary and utterly pale.
At midnight he was brought into the MRI unit, a rather cold place. It should take half an hour, but it was 1:50am when he came out. Dr. Bruce must keep him in the Acute Care Unit for observation, a nurse told us, and wheeled his bed along the corridors. We followed them, but she asked us to leave: “We will take good care of him.”
Back in the hotel at 3:00am we fell into a deep sleep, till Mino called at 7am:
“The bed moves all the time, like waves (for prevention of bedsores), nurses come in and out, they put lights on and off. I can’t sleep here! Dr. Bruce came and told me that my MRI shows the tumor with 7cm in diameter. That means it has grown tremendously from 4.6cm on my MRI of 9/17. Frank told me the tumor has shrunk now to 2-3cm. He assured me that. I don’t believe it has grown. I told Dr. Bruce that he must show me the MRI scan, which he agreed to do. After having listened to my story, he told me that there are no other options left but a surgery. We talked for 40 minutes and I recorded everything. You must come immediately. I want to get out of here.”
Understandably, Mino was scared. The description of surgery by Dr. Paul Jackson of Stanford on 8/25 carved a deep fear in Mino’s psyche: 4-6 inch hole drilled on the right side of his head. That means, half of his head cracked open, tumor taken out, and at the end a titanium plate will be hammered on. He has to walk around hairless, with titanium plate hanging on his head for the 14 months of his survival time on earth.
Three days until the scheduled surgery, Monday 10/5, I stayed in Mino’s hospital room day and night, trying to make his life easier, at least emotionally.
One after the other the neurologists, neurosurgeons, and their various assistants and residents came to Mino, trying to tell him the rationale of an immediate surgery.
Mino listened quietly and answered: “I can’t make such a life or death decision in this lousy environment. I must get out of here”
All the doctors listened, agreed, but always added the imminent danger of a stroke, a seizure, or worse a coma, even death, because the big tumor is aggressively shifting.
“I understand”, Mino coolly answered, ”but I can’t make up my mind. I need a silence. I must listen to my inner voice.”
Three days and three nights passed and Mino had really one scary night with shortness of breath. The night nurse refused to call the doctor, refused to give Mino oxygen, because oxygen is not in his program, there is no oxygen in the hospital, she has to write an order form, which will take at least one hour. All this she was barking over Mino’s head as if she had an entire stadium before her. Mino was loosing consciousness. I ran out of the room, screaming for help. A few staffs came and helped Mino breathe.
I saw first-hand, how patients might die in the hospital being attended by totally ignorant, incompetent, and arrogant nurses, who seem to populate hospitals during the nights.
On Sunday 10/4, the last day before the scheduled surgery, Mino still insisted he would “get out of here”. He need the serenity of mind, need beautiful place, need to be in the silence of the universe. Mino uttered these words with tears in his eyes.
I told him, “Minochan, you can’t go out anymore, but you can bring to this room all the redwood trees you admire, all the beautiful places you remember, all the Bodhisattvas who protect you, all the great energies of the universe right here into this room. You are able to do it. You are trained in meditation. Minochan, please.”
Leaving him alone, I went out and stayed in front of the door, as a watch dog, so that nobody will come into the room and disturb Mino.
During those days before the surgery, Friedemann moved everything from the hotel into an apartment Mino had rented, tried to furnish it with Shawn Findlan’s help, came everyday for an hour or so to see Mino, moved to the closest hotel for him to stay, often brought Chinese take-out, so that we had at least something to eat. (Hospital food has never been so bad). On top of all this, Friedemann completed one important proposal for his research project, sitting wherever an internet connection was available.
After I let Mino be completely alone in his bed for almost an hour, Friedemann came, and we went in. Mino wanted to stand up and look into the sun. With the magnificent evening sky spreading over the Hudson River and the George Washington Bridge, Mino watched the sun. We were all quiet, holding him from both sides.
After a while Mino had to lie down again, exhausted, but his face showed a strange calm, resolve, even a smile. Agony and uncertainty gone.
He became active, wanted his computer, checking, writing, and calling friends. Wanted to shave: “I want to be clean for surgery”. He signed all the papers, in case of complications, bleeding, organ donations, etc. Friedemann and I looked at each other. I had to fight back tears.
Around 6am on October 5, on the day of surgery, Dr. Bruce came to see Mino. After him Dr. Nelson, neurologist, and then a lovely middle-aged Indian nurse, who looked at Mino and me with such affectionate eyes that I started to feel life in myself after a sleepless night.
The surgery will start at 10 or 11am, we were informed. They will come to pick up Mino on time. Friedemann came at 8am. Mino wanted to hear from a neurosurgeon, Dr. Bruce’s resident, an exact description of the procedure of the surgery. Dr. Mark Otten, a young, brilliant man showed up and described step by step what is going to happen. Mino is not going to get a 4-6 inch hole oho his head, as Dr. Jackson of Stanford had told him, but a 2 inch long straight line above his ear with stitches, which will be removed a week after the surgery. His explanation was so factual and scientific that Mino got really interested, as if he was not the object of surgery, but the performer.
After Dr. Otten left, Mino fell asleep, holding both our hands. We sat on his sides watching him, for almost two and a half hours. Mino was completely at peace with himself, sleeping deeply, sometimes even snoring.
Around 12:30 two nurses came and rolled Mino’s bed to the surgery floor. We followed. In the preparation room, the chief anesthesiologist explained in detail when he was going to do what. After a long discussion with Mino, he told us “please don’t worry about him. We will take good care of him” His eyes, genuinely kind, relieved our unspoken anxieties.
Seconds before being rolled into the surgery room at 2pm, Mino showed us a radiant mischievous smile and said in Japanese, “I’ll be back soon.”
The surgery will last 3 to 5 hours. We were told to wait in a large waiting room with various patient families. Friedemann started to sleep as soon as we found corner seats. I envy him for his ability to sleep anywhere, anytime, if he is tired. People around us talk, talk, talk. Children run, jump and scream. I was wide-awake, though I put a black mask over my eyes.
The last three nights besides Mino’s bed I experimented with many different postures. I had one larger and one smaller chair for the nights. Putting them together I sit down on the larger one with my upper body slightly inclined, legs stretching out on the smaller one. After an hour or so my head falls down, my neck and lower back start to hurt. I change my position: Putting my legs high up on the back of the larger chair, I lie down flat on the chairs. With a slight movement of my body, the chairs start to depart from each other, and I feel draft from underneath. The better position, I found out, is to crawl on the chairs facedown, bending my arms and legs under my body, fetus like. In this posture, I can rest and jump up, if Mino wants to drink a cup of hot water, or he has to go to the toilet.
Now, Mino is in the surgery room for the next 5 hours. I imagined the step by step procedure which Dr. Otten explained to Mino this morning.
Two hours and ten minutes after Mino went into surgery, a nurse in OR outfit came hurriedly to us: “Dr. Bruce wants to talk to you. Please follow me.” I jumped up. Friedemann was pulled out of his deep sleep, running after me. We followed the nurse – Dr. Bruce wants to talk to us … but what? He stopped his surgery after opening Mino’s skull? What happened? We were asked to wait in the corridor.
After a few minutes, which seemed to us like an eternity, Dr. Bruce appeared still with his surgeon cap and clothes: “Well”, he said with a smile, “it was a fantastic surgery. More than 99% of the tumor I could take out. Everything went better than expected”. He is a very, very tall slender man. I wanted to hug him, and I ended up putting my arms around his waist.
“Now you can go to the cafeteria and eat something. 90 minutes later come back to the recovery room”.
Friedemann and I stood in the middle of the corridor, embracing each other and started to cry.
“I fell and hit my head in the bathroom”, Mino’s screaming voice through the phone from his hotel room in New York made us shudder. It was September 29, 2009 at 2:30 AM California time.
“Mino, Mino, please stay calm. Lie down. I’m coming… I’m getting on the next available flight to New York… call Frank for help…”
“Damn it, Frank doesn’t pick up his phone. I called 911”
Friedemann was already frantically searching for a seat on the earliest possible flight to New York.
The 911 driver called. “His vitals are okay. We’ll bring him to the Queens Hospital.”
His vitals are okay, are okay, are okay, but what about his brain tumor after the fall? I was running around in the house collecting things to take and throwing them into my small travel bag. Friedemann found out that there was no seat available for non-stop flights to JFK or LaGuardia, even in First Class.
Twelve hours later, after zigzagging across the continent, I arrived in LaGuardia. Now what? Where is Mino? I called Friedemann. No answer. Called Frank. No answer. Called Shawn: “Mino is sleeping in the hotel”.
My cell phone went dead.
I realized that I didn’t know the address of the hotel. Early on Mino wanted to move out of the hotel into an apartment. Repeatedly he had told us he could handle everything by himself… we should not worry.
We had been worried for the past four weeks. Uncertainties are killing us.
I digged through my travel bag… all emails Mino had sent us from his hotel in Flushing, NY, but no address of the hotel… my reading glasses, my credit card, my California ID, $60 in cash, somehow two toothbrushes, one teabag, my cell phone, and a fat address book with Japanese, American, German, Swiss, French, and British addresses, but no hotel where Mino is sleeping. Faintly I remembered it was close to the LaGuardia airport.
I got into a taxi. The driver shook his head and started driving full speed.
“You know Lexington Marco LaGuardia hotel?”
“No.”
“Where are we going?”
“Ain’t know nothing.”
“Nothing?! Stop at the next hotel on the way, please”.
“Hah? Hotel? Which hotel?”
“That one over there… it says
“Where?”
“Here. Stop. Wait.”
“Heh?”
I went into the hotel lobby, got the address of the Lexington Marco LaGuardia.
The taxi driver set out to find it after cruising around in Flushing for what seemed to me an endlessly long time.
“Mino is staying in your hotel. What is his room number?” I asked the Marco receptionist.
She smiled: “Room 1811.”
I knocked at the door of 1811. No answer. I knocked harder and harder. No answer. I knocked again: “Mino, Minochan, I’m here.” I jumped back into the elevator down to the receptionist. “Mino doesn’t answer… he had a serious accident early this morning…”
“…I heard about that,” the receptionist smiled.
“…I’m Mino’s mother… just came from California… give me a second key.”
“Sorry, I can’t give anybody a second key.”
“…but I’m his mother…”
“Sorry, I’m not allowed to give you the key. He must first call us and give us permission…”
“…but he may be in a coma, after the fall… I need to see him.”
“Sorry, I can’t help you, unless he calls me and gives me permission.”
“…but he has a brain tumor and hit his head this morning. 911 came.”
“I heard it and 911 brought him back too.”
“… so give me the key.”
The woman smiled: “Our hotel policy is not to give a second room key to anybody, unless the occupant calls me.”
“… but don’t you see, he may be in a coma. I’m his mother. How can Mino call you, if he is in a coma? He needs help. This is an emergency.”
“Sorry. Hotel policy is hotel policy… I didn’t make the rules and I can’t change them”, the receptionist never stopped smiling.
“Can I talk to the manager?”
“Sorry, he is not here.”
“Anybody else?”
Out came another woman. She said the same thing but then added: “There is a Chinese guy who has a second key. You should ask him to let you in.”
“Mino has been staying in your hotel for a month. What kind of treatment is this?”
The two women smiled. They let me use the hotel phone to call Frank.
No answer. I called his number again and again. At last he picked up. It took him half an hour to arrive at the hotel, while I was sitting in the lobby, back to the ever blaring TV screen high up on the wall, imagining Mino lying in a coma.
When Frank Huo, the TCM Practitioner, stepped into the lobby, I almost jumped on him, forgetting all etiquette, which is so engrained into the formality of meeting someone important for the first time. Frank was a short, muscular man in his mid-forties, wearing a bright red jacket.
“Oh, Mino is okay. Queens Hospital didn’t find any bleeding in his head after the fall. He is doing fine”, he said.
When Frank opened the door to Mino’s room and I tiptoed in, I saw Mino stretched out in his king-size bed, breathing lightly, pale, almost gray. His stubbly beard made him look different, strange and aged. The left side of his face distorted and the left corner of his lips drooping. I put my arm around him.
“Aaaa, Sayachan”, he uttered, his eyes barely open. He started to cry.
“Minochan, I’m here. Friedemann comes tomorrow. We are both going to be here.”
I felt his body relaxing and he slid back into slumber, tears still in the corners of his eyes.
Something deeply disturbing, something very wrong. I started to shiver. As soon as Friedemann comes, we must take Mino to the Columbia Medical Center. If not, something terrible will happen.
Frank was standing behind me and said “there are many Chinese restaurants around here, if you haven’t had dinner”
Dinner? I had no breakfast, no lunch, no dinner. A lump was stuck in my throat. I tried to breathe deeply, slowly, 100 times, 1000 times, and started to hum in the planes all the songs I remembered form my childhood, and adolescence in Japan, all the arias and melodies from my adult life in Europe and America. I was still humming when the plane landed in LaGuardia.
I thanked Frank, and lied down besides Mino in his king-sized bed and watched him breathe.
In the afternoon of Oct. 1, Friedemann and I literally dragged Mino from his bed to the car. He could barely walk. All morning he slept. When we tried to wake him up to go to the Columbia University Medical Center emergency unit, he kept saying: “I want to sleep. Leave me alone”
Just looking at Mino we could feel that his condition was very grave. We forced ourselves not to respect his wish of leaving him alone. We could have called 911 early in the morning, but 911 was obliged to bring the caller to the closest hospital, that primitive Queens Hospital Emergency unit again. We were determined to go to Dr. Jeffrey Bruce, the Co-director of the Brain Tumor Center at Columbia University Medical Center, who was referred to us by Dr. Dan Wecht from Pittsburgh.
On the way to the hospital, Dr. Wecht’s nurse, Kathy Ross called. Mino woke up instantly and spoke clearly and decisively like a CEO. As soon as the phone call was over, he fell asleep again on this father’s shoulder. The contrast between his faltering mind and his voice a moment ago was striking. Looking at his miserable condition, I could hardly believe that this same person could speak with full of energy. The same phenomenon would repeat in the course of the day.
Emergency unit does not mean emergency at all. After filling our paper and more papers, going from one nurse to the next, answering the same questions over and over again, and getting the blood pressure and temperature measured countless times, Mino was finally laid down on a bed from his wheelchair – a kind of promotion due to the severity of his condition. He brought with him all the medical records together with the past scans of the MRI in his backpack, which he had, staggering to his feet, asked his father to carry.
In the Emergency Unit, the doctors were extremely attentive and kind, answering questions Mino posed. Very often they became so fascinated with his comments that they started exchanging opinions with him, like researchers in the lab. Mino showed no trace of fatigue or sickness. Alert, sharp, and even cheerful, like in his normal days.
However, as soon as we were left alone, before the next doctor came, Mino fell asleep. He looked weary and utterly pale.
At midnight he was brought into the MRI unit, a rather cold place. It should take half an hour, but it was 1:50am when he came out. Dr. Bruce must keep him in the Acute Care Unit for observation, a nurse told us, and wheeled his bed along the corridors. We followed them, but she asked us to leave: “We will take good care of him.”
Back in the hotel at 3:00am we fell into a deep sleep, till Mino called at 7am:
“The bed moves all the time, like waves (for prevention of bedsores), nurses come in and out, they put lights on and off. I can’t sleep here! Dr. Bruce came and told me that my MRI shows the tumor with 7cm in diameter. That means it has grown tremendously from 4.6cm on my MRI of 9/17. Frank told me the tumor has shrunk now to 2-3cm. He assured me that. I don’t believe it has grown. I told Dr. Bruce that he must show me the MRI scan, which he agreed to do. After having listened to my story, he told me that there are no other options left but a surgery. We talked for 40 minutes and I recorded everything. You must come immediately. I want to get out of here.”
Understandably, Mino was scared. The description of surgery by Dr. Paul Jackson of Stanford on 8/25 carved a deep fear in Mino’s psyche: 4-6 inch hole drilled on the right side of his head. That means, half of his head cracked open, tumor taken out, and at the end a titanium plate will be hammered on. He has to walk around hairless, with titanium plate hanging on his head for the 14 months of his survival time on earth.
Three days until the scheduled surgery, Monday 10/5, I stayed in Mino’s hospital room day and night, trying to make his life easier, at least emotionally.
One after the other the neurologists, neurosurgeons, and their various assistants and residents came to Mino, trying to tell him the rationale of an immediate surgery.
Mino listened quietly and answered: “I can’t make such a life or death decision in this lousy environment. I must get out of here”
All the doctors listened, agreed, but always added the imminent danger of a stroke, a seizure, or worse a coma, even death, because the big tumor is aggressively shifting.
“I understand”, Mino coolly answered, ”but I can’t make up my mind. I need a silence. I must listen to my inner voice.”
Three days and three nights passed and Mino had really one scary night with shortness of breath. The night nurse refused to call the doctor, refused to give Mino oxygen, because oxygen is not in his program, there is no oxygen in the hospital, she has to write an order form, which will take at least one hour. All this she was barking over Mino’s head as if she had an entire stadium before her. Mino was loosing consciousness. I ran out of the room, screaming for help. A few staffs came and helped Mino breathe.
I saw first-hand, how patients might die in the hospital being attended by totally ignorant, incompetent, and arrogant nurses, who seem to populate hospitals during the nights.
On Sunday 10/4, the last day before the scheduled surgery, Mino still insisted he would “get out of here”. He need the serenity of mind, need beautiful place, need to be in the silence of the universe. Mino uttered these words with tears in his eyes.
I told him, “Minochan, you can’t go out anymore, but you can bring to this room all the redwood trees you admire, all the beautiful places you remember, all the Bodhisattvas who protect you, all the great energies of the universe right here into this room. You are able to do it. You are trained in meditation. Minochan, please.”
Leaving him alone, I went out and stayed in front of the door, as a watch dog, so that nobody will come into the room and disturb Mino.
During those days before the surgery, Friedemann moved everything from the hotel into an apartment Mino had rented, tried to furnish it with Shawn Findlan’s help, came everyday for an hour or so to see Mino, moved to the closest hotel for him to stay, often brought Chinese take-out, so that we had at least something to eat. (Hospital food has never been so bad). On top of all this, Friedemann completed one important proposal for his research project, sitting wherever an internet connection was available.
After I let Mino be completely alone in his bed for almost an hour, Friedemann came, and we went in. Mino wanted to stand up and look into the sun. With the magnificent evening sky spreading over the Hudson River and the George Washington Bridge, Mino watched the sun. We were all quiet, holding him from both sides.
After a while Mino had to lie down again, exhausted, but his face showed a strange calm, resolve, even a smile. Agony and uncertainty gone.
He became active, wanted his computer, checking, writing, and calling friends. Wanted to shave: “I want to be clean for surgery”. He signed all the papers, in case of complications, bleeding, organ donations, etc. Friedemann and I looked at each other. I had to fight back tears.
Around 6am on October 5, on the day of surgery, Dr. Bruce came to see Mino. After him Dr. Nelson, neurologist, and then a lovely middle-aged Indian nurse, who looked at Mino and me with such affectionate eyes that I started to feel life in myself after a sleepless night.
The surgery will start at 10 or 11am, we were informed. They will come to pick up Mino on time. Friedemann came at 8am. Mino wanted to hear from a neurosurgeon, Dr. Bruce’s resident, an exact description of the procedure of the surgery. Dr. Mark Otten, a young, brilliant man showed up and described step by step what is going to happen. Mino is not going to get a 4-6 inch hole oho his head, as Dr. Jackson of Stanford had told him, but a 2 inch long straight line above his ear with stitches, which will be removed a week after the surgery. His explanation was so factual and scientific that Mino got really interested, as if he was not the object of surgery, but the performer.
After Dr. Otten left, Mino fell asleep, holding both our hands. We sat on his sides watching him, for almost two and a half hours. Mino was completely at peace with himself, sleeping deeply, sometimes even snoring.
Around 12:30 two nurses came and rolled Mino’s bed to the surgery floor. We followed. In the preparation room, the chief anesthesiologist explained in detail when he was going to do what. After a long discussion with Mino, he told us “please don’t worry about him. We will take good care of him” His eyes, genuinely kind, relieved our unspoken anxieties.
Seconds before being rolled into the surgery room at 2pm, Mino showed us a radiant mischievous smile and said in Japanese, “I’ll be back soon.”
The surgery will last 3 to 5 hours. We were told to wait in a large waiting room with various patient families. Friedemann started to sleep as soon as we found corner seats. I envy him for his ability to sleep anywhere, anytime, if he is tired. People around us talk, talk, talk. Children run, jump and scream. I was wide-awake, though I put a black mask over my eyes.
The last three nights besides Mino’s bed I experimented with many different postures. I had one larger and one smaller chair for the nights. Putting them together I sit down on the larger one with my upper body slightly inclined, legs stretching out on the smaller one. After an hour or so my head falls down, my neck and lower back start to hurt. I change my position: Putting my legs high up on the back of the larger chair, I lie down flat on the chairs. With a slight movement of my body, the chairs start to depart from each other, and I feel draft from underneath. The better position, I found out, is to crawl on the chairs facedown, bending my arms and legs under my body, fetus like. In this posture, I can rest and jump up, if Mino wants to drink a cup of hot water, or he has to go to the toilet.
Now, Mino is in the surgery room for the next 5 hours. I imagined the step by step procedure which Dr. Otten explained to Mino this morning.
Two hours and ten minutes after Mino went into surgery, a nurse in OR outfit came hurriedly to us: “Dr. Bruce wants to talk to you. Please follow me.” I jumped up. Friedemann was pulled out of his deep sleep, running after me. We followed the nurse – Dr. Bruce wants to talk to us … but what? He stopped his surgery after opening Mino’s skull? What happened? We were asked to wait in the corridor.
After a few minutes, which seemed to us like an eternity, Dr. Bruce appeared still with his surgeon cap and clothes: “Well”, he said with a smile, “it was a fantastic surgery. More than 99% of the tumor I could take out. Everything went better than expected”. He is a very, very tall slender man. I wanted to hug him, and I ended up putting my arms around his waist.
“Now you can go to the cafeteria and eat something. 90 minutes later come back to the recovery room”.
Friedemann and I stood in the middle of the corridor, embracing each other and started to cry.
Sunday, November 1, 2009
My time at CUMC
The following is a summary of my time in NYC between 9/28 and 10/14, and contains a lot of interesting details that had escaped me before. It is an edited version from a personal email that I sent to Dr. Daniel Wecht from UPMC in Pittsburgh, on 10/21/09.
“After my fall on 9/28 at night, I had visit to a local ER room [Queens Hospital], where they ONLY performed a CT scan to make sure that I did not have some bleeding in the brain. I told them that I had a GBM, but they refused to do a MRI. I remember very little from that time, except that I had tremendous headaches, and was tired all the time. Also I wrote in my diary as I just found out that I was vomiting several times a day, but obviously I was in denial. My mother was on the plane 2.5 hours (at 4:30am in SFO) to NYC, just with a coat, ID, CC, and petty cash. And my father arrived a day later, with clothing and some supplies for them and myself. I refused to go to the hospital, insisting that I was fine, even though everyone was urging me to go, incl. my Chinese practitioner Frank Huo, my parents, and Kathy (Kathy Ross, Dr. Wecht’s nurse). I got Kathy's call on the way to the hospital, after my parents literally dragged me to CUMC on 10/1.
I was finally checked into CUMC on 10/1, and after lots of testing by a whole slew of neurologists, and other doctors (they did not look at any of my medical file that I brought with me), they finally ordered an MRI about 10 hours after admission, and my tumor had grown to about 7cm in diameter. I remember the ride down the elevator, and I slept through most of the scanning. The doctors wanted to keep me overnight for observation, hooked me up with either with 10 or 12 EKG leads, and took blood tests every few hours. My parents took a local hotel, which turned out to be about 40min away by car, but my mother spent 6 of the next 8 nights with me in the Acute Care unit, sleeping in a cot next to me, or sometimes also in my bed. I had some horrific experiences at night.
After getting percocets (a powerful opiate) for the first time in my life at about midnight one of the nights before surgery, I developed breathing difficulties, and called for the night nurse asking her for supplemental oxygen. She told me that the hospital did not have oxygen, and anyhow she would not give me any. We had a pretty good screaming match, with her insisting that I was breathing just fine (I just had a hard time getting air into my lungs), and insisting that it would take doctor's orders to get O2. She also refused to get the doctor on call. Finally, on the insistence of my mother 45 minutes later I did get the oxygen, and by that time my P(O2) had dropped so low that I had a hard time to focus to stay conscious. I was never that scared in my whole life, putting my life into the hands of a nurse who was incompetent. She was fired the next day. The doctors of course suspected that I had a seizure, and they had test after test for seizures, and are keeping me on anti-seizure medication (maybe also for other reasons).
CUMC Presbyterian has one major problem that I was REALLY surprised to learn about: You cannot use the water in the building, because they detected Legionnaire's disease (old pipes) for the last 3 years. Thus, cannot wash hands with wounds, cannot shower, or use for drinking. I hope they get that fixed.
My energy was draining quickly after 10/2, and everyone was talking about surgery, but I was in agony about surgery and what it meant, and still in deep denial. In typical fashion, I insisted on detail description of a surgery. I told everyone my whole story, starting with my first symptoms, my visit with you, my treatment with Frank, my history, my NASA research on brain/nano interface, etc. They were all amazed at my presence of mind, because often I would be sound asleep and suddenly wake up, and start asking questions and giving clear answers, before going back to sleep. But I was still in denial, and the scariest part was that the GBM seemingly changed some aspects of my personality. I wanted detailed descriptions, including what kind of tools they would use, how the stereotactic surgery would be performed, what kind of incision there would be, picts of my latest MRI scan, sedation I would be given, etc. The doctors were quite astounded to say the least, and Dr. Bruce scheduled the surgery for 10/5 at ~11am, telling me that I could cancel anytime.
My parents were determined not to let me leave the hospital – it was all I wanted...
My friend and colleague Shawn Findlan (who had gotten some furniture into my apartment in Flushing, NY), had come for a visit to the hospital, and suggested that I could go outside to the riverside park near the Washington Bridge. Little did Shawn know that he caused quite a stir with my parents and especially with the doctors, since the park is quite inaccessible from the hospital. Of course, I requested to be able to go outside to a park, which I could see from my hospital bed, but my parents and my doctors insisted that I would stay in the acute care.
I tried to walk, but I quickly realized that I could not even walk at that point anymore. So finally, we had a beautiful afternoon with view of the George Washington bridge, with a magnificent colorful sky late in the afternoon of Sunday, after 3 days in agony about deciding on surgery or not. At that point I realized that I had run out of options, and that surgery was the only thing left.
I fault very much Paul Jackson from Stanford, who had SCARED me by saying that they needed to take of a 4-6" section of my skull to get to the cancer, and even though you told me differently, it stuck in my head, until I got reassurances from Dr. Bruce that there would only be a small incision with a small vertical scar (which is btw healing beautifully).
I had a blog entry dated 10/4/09, which I reproduce here for you in full:
Sunday, October 4, 2009
Adifferent path
All
Afew days ago I dlipped in the bathromm of my hotel in NYC and hit the left side of my head. Thencalled 911 foe an ERIn NY Queens Hospital. They di an ct scan an som other testing
Since1/1/-09 I’m in Columbia Univ Medical enter under the care othe excellent care a Presbeteryan Hospital under the care of zDr.Bruce
Facts :MY GBM had almost doubled in mass in the last 10 dys and the edema
increased as well,as did the pressure in my braincase
My prents came toNYC and are staying ina hotel before we all move to my new apartment to Flushings NY in about 10 days
I will undergo Emergency surgery tomorrow at 11am to remove my GBMfor 2-5 hours
I will then be in the NruroICU for 24 fours &then radiation and chemo starting in aout 10/12 combined w my continued Chinese herbal, energy& meditation treatment
Thi is not the path I wanted but I need to survive this terrible cancer, so the surgery is here to help me fight this disease.
Never Give up!!!Always fight!!! There is always HOPE
Wish me the best!I only have one job: survive!!!!
Here is the scary part (in retrospect of course): I was absolutely certain that I had written a perfect email, with no spelling or typing errors. Pretty amazing, and I guess not unusual for GBM patients?!?
The surgery was scheduled for Monday 10/5 at 11am for a 3-5 hour surgery, and 11am came and went (there was an emergency right before), and I used the time to sleep, holding on to both my parents hands. Finally, I was moved to the prep room, and I had a long talk with the anesthesiologist, and one of the resident neurosurgeons, again going over the procedure in DETAIL. I insisted on taking photos of all the doctors, and filled out all the final paperwork, including saying yes to feeding tube, breathing tube, resuscitation and no to organ donor. They had prepared several units of blood, after doing 3 blood tests over several days to get my specific blood type data.
After the prep room, I was wheeled into the OR, and just before told my parents that I would see them soon. Everything was setup in the OR as I had requested. They showed me the huge LCD panels with MRI scans, the light panels covered everywhere with MRI scans, and pictures of my face, the stereotactic equipment, and I even insisted on seeing the special saw for cutting through the bone. I already knew from you about the Ti wire inserts, so I did not ask about those. I insisted to be introduced to all the doctors (the resident was Zachary L. Hickman, who would after the surgery always be one of the first to check on me in the morning) and nurses by name (I forgot the names of the nurses), and I insisted again on having me walk through the procedure. They would sedate me just for the pain, under restraint, then open a hole in my skull, carefully expose the brain tissue, and then wake me up to do testing on the cortex, before sedating me again for the remainder of the procedure. There would be no general anastasia. The only thing they did not tell me was that they would insert a catheter into my urethra. They moved me to the OR table. Finally, I had was satisfied, and I told them "I just want to make sure that you all would give their 100% to make sure to get the best operation possible". Dr. Bruce asked me if he could start, and the last thing I remember was that I told them: "Yes, I am ready, lets go ahead".
The surgery took 2 hours and 10 minutes, and Dr. Bruce estimated later that he removed about 99.3% of the tumor. My parents were shocked when they were called after 2 hours and 10 minutes, fearing the worst for me, because the procedure was supposed to be much longer.
[The way my mother tells her story is that it was the worst shock in her life, because she thought something must have gone terribly wrong].
Afterwards, I remember waking up in the recovery room, where my parents were there, and my father was scolded for taking pictures of me. I wanted to get pretty pissed at the staff but just said "must be some privacy issues", so we pulled the curtains shut and photographed away (with my little SLR Nikon). I never needed any blood, or breathing, or feeding tubes. Surgery went perfectly well. I had also insisted for them to tape a picture of a specific Buddha over my heart, and I concentrated on that throughout the surgery. [Of course, I have this picture still, with tape and all, and I will treasure it for as long as I live.]
After the recovery room, they hauled me to another MRI, that one on the same floor (a 3T magnet), and then back to the recovery. My parents left for the night at that point, and I was wide-awake, finally moving into the neurosurgery ICU. I felt a triumph, and I was screaming at the top of my lungs triumphantly somewhere around 1am: "I am going to the NICU! I am going to the NICU!" Some of the nurses complained, and I told her that she was not being very supportive of me, and soon half the recovery room was chanting right along with me. I am sure that I was disturbing some of the patients, but it met everything in the world to me. I met two of the patients later on, and they told me that they felt so energized by my example that they imitated me, and for the rest of the night people were rooting each other to get out of the recovery room.
The NICU was the best time I ever had in a hospital. Gary the nurse was my savior. You WANT him to be your nurse! I finally slept for the first time for almost 2 weeks without any headaches at all.
After the NICU, I went off to the acute care unit, which was a catastrophe, with furniture construction at midnight in front of my room, and they had a international phone right in front of my room, with people talking, screaming, 24/7. Anyhow, on Friday 10/9 in the evening after much testing and lobbying by various doctors, I was admitted to the rehab unit, for a scheduled 2 week stay. I had my first PT session on 10/9, barely able to walk with two IVs in tow, and the first session in the rehab unit (after being medically stable except for a UTI that I and my parents blame on the nursing staff) on Sat. afternoon. At that point I was able to walk with a walker. On Sunday, Frank showed up and did some acupuncture treatment in the evening. On Monday, I refused the wheelchair, insisting on the walker, and I was cleared to roam the hospital without a nurse or without a walker on Monday evening. On Tuesday, I wore out both my PT, insisting that they would do my exercises that I was doing with Frank, and instead my OT decided to take me on a walk together with another OT. I spent one hour outside, going to a Starbucks, getting some petty cash and buying some nice fruits from a street vendor, before seeing a neurophysiologist and speech therapist. By Tues. evening 10/13 it was clear that they would discharge me, and we settled on Thurs. 10am. I had little to do on Wed., demonstrating to Dr. Brenda Mallory (the had of rehab) that I could in fact walk on my toes, or my heels. So the two weeks really became a three-day treatment.”
Note for 11/1/09:
This letter was originally written on 10/21. I realize now of course how much my parents were fighting me to keep me in the hospital, and that almost every resident in neurosurgery visited me, as did several of the faculty, and later also from the rehabilitation. The ordeal of staying in a hospital included being afraid for my life by the night nurses. Some of the day nurses were not quite up to snuff, one (Vanessa) trying to give me a morphine pill that fell on the floor! [I found out that morphine (either IV or oral) works much better for me then the dreaded percocets in its various incarnation] This is an issue CUMC needs to address. Another aspect is being constipated for 10 days, and it took almost another two weeks to clear that debris out of my body.
My days since returning from the hospital have been very busy with working out a treatment plan from about 400 various cancer fighting protocols, and working with Frank Huo on meditation and exercises. My natural treatment protocol currently includes the Budwig diet (flaxseed oil and cottage cheese), a specially formulated treatment plan using curcumin, the active ingredient in Turmeric, as well Chinese herbal antitumor agents. My mother spent most of her time with me in the hospital, and my father was busy with getting the apartment in Flushing, NY ready for all of us.
“After my fall on 9/28 at night, I had visit to a local ER room [Queens Hospital], where they ONLY performed a CT scan to make sure that I did not have some bleeding in the brain. I told them that I had a GBM, but they refused to do a MRI. I remember very little from that time, except that I had tremendous headaches, and was tired all the time. Also I wrote in my diary as I just found out that I was vomiting several times a day, but obviously I was in denial. My mother was on the plane 2.5 hours (at 4:30am in SFO) to NYC, just with a coat, ID, CC, and petty cash. And my father arrived a day later, with clothing and some supplies for them and myself. I refused to go to the hospital, insisting that I was fine, even though everyone was urging me to go, incl. my Chinese practitioner Frank Huo, my parents, and Kathy (Kathy Ross, Dr. Wecht’s nurse). I got Kathy's call on the way to the hospital, after my parents literally dragged me to CUMC on 10/1.
I was finally checked into CUMC on 10/1, and after lots of testing by a whole slew of neurologists, and other doctors (they did not look at any of my medical file that I brought with me), they finally ordered an MRI about 10 hours after admission, and my tumor had grown to about 7cm in diameter. I remember the ride down the elevator, and I slept through most of the scanning. The doctors wanted to keep me overnight for observation, hooked me up with either with 10 or 12 EKG leads, and took blood tests every few hours. My parents took a local hotel, which turned out to be about 40min away by car, but my mother spent 6 of the next 8 nights with me in the Acute Care unit, sleeping in a cot next to me, or sometimes also in my bed. I had some horrific experiences at night.
After getting percocets (a powerful opiate) for the first time in my life at about midnight one of the nights before surgery, I developed breathing difficulties, and called for the night nurse asking her for supplemental oxygen. She told me that the hospital did not have oxygen, and anyhow she would not give me any. We had a pretty good screaming match, with her insisting that I was breathing just fine (I just had a hard time getting air into my lungs), and insisting that it would take doctor's orders to get O2. She also refused to get the doctor on call. Finally, on the insistence of my mother 45 minutes later I did get the oxygen, and by that time my P(O2) had dropped so low that I had a hard time to focus to stay conscious. I was never that scared in my whole life, putting my life into the hands of a nurse who was incompetent. She was fired the next day. The doctors of course suspected that I had a seizure, and they had test after test for seizures, and are keeping me on anti-seizure medication (maybe also for other reasons).
CUMC Presbyterian has one major problem that I was REALLY surprised to learn about: You cannot use the water in the building, because they detected Legionnaire's disease (old pipes) for the last 3 years. Thus, cannot wash hands with wounds, cannot shower, or use for drinking. I hope they get that fixed.
My energy was draining quickly after 10/2, and everyone was talking about surgery, but I was in agony about surgery and what it meant, and still in deep denial. In typical fashion, I insisted on detail description of a surgery. I told everyone my whole story, starting with my first symptoms, my visit with you, my treatment with Frank, my history, my NASA research on brain/nano interface, etc. They were all amazed at my presence of mind, because often I would be sound asleep and suddenly wake up, and start asking questions and giving clear answers, before going back to sleep. But I was still in denial, and the scariest part was that the GBM seemingly changed some aspects of my personality. I wanted detailed descriptions, including what kind of tools they would use, how the stereotactic surgery would be performed, what kind of incision there would be, picts of my latest MRI scan, sedation I would be given, etc. The doctors were quite astounded to say the least, and Dr. Bruce scheduled the surgery for 10/5 at ~11am, telling me that I could cancel anytime.
My parents were determined not to let me leave the hospital – it was all I wanted...
My friend and colleague Shawn Findlan (who had gotten some furniture into my apartment in Flushing, NY), had come for a visit to the hospital, and suggested that I could go outside to the riverside park near the Washington Bridge. Little did Shawn know that he caused quite a stir with my parents and especially with the doctors, since the park is quite inaccessible from the hospital. Of course, I requested to be able to go outside to a park, which I could see from my hospital bed, but my parents and my doctors insisted that I would stay in the acute care.
I tried to walk, but I quickly realized that I could not even walk at that point anymore. So finally, we had a beautiful afternoon with view of the George Washington bridge, with a magnificent colorful sky late in the afternoon of Sunday, after 3 days in agony about deciding on surgery or not. At that point I realized that I had run out of options, and that surgery was the only thing left.
I fault very much Paul Jackson from Stanford, who had SCARED me by saying that they needed to take of a 4-6" section of my skull to get to the cancer, and even though you told me differently, it stuck in my head, until I got reassurances from Dr. Bruce that there would only be a small incision with a small vertical scar (which is btw healing beautifully).
I had a blog entry dated 10/4/09, which I reproduce here for you in full:
Sunday, October 4, 2009
Adifferent path
All
Afew days ago I dlipped in the bathromm of my hotel in NYC and hit the left side of my head. Thencalled 911 foe an ERIn NY Queens Hospital. They di an ct scan an som other testing
Since1/1/-09 I’m in Columbia Univ Medical enter under the care othe excellent care a Presbeteryan Hospital under the care of zDr.Bruce
Facts :MY GBM had almost doubled in mass in the last 10 dys and the edema
increased as well,as did the pressure in my braincase
My prents came toNYC and are staying ina hotel before we all move to my new apartment to Flushings NY in about 10 days
I will undergo Emergency surgery tomorrow at 11am to remove my GBMfor 2-5 hours
I will then be in the NruroICU for 24 fours &then radiation and chemo starting in aout 10/12 combined w my continued Chinese herbal, energy& meditation treatment
Thi is not the path I wanted but I need to survive this terrible cancer, so the surgery is here to help me fight this disease.
Never Give up!!!Always fight!!! There is always HOPE
Wish me the best!I only have one job: survive!!!!
Here is the scary part (in retrospect of course): I was absolutely certain that I had written a perfect email, with no spelling or typing errors. Pretty amazing, and I guess not unusual for GBM patients?!?
The surgery was scheduled for Monday 10/5 at 11am for a 3-5 hour surgery, and 11am came and went (there was an emergency right before), and I used the time to sleep, holding on to both my parents hands. Finally, I was moved to the prep room, and I had a long talk with the anesthesiologist, and one of the resident neurosurgeons, again going over the procedure in DETAIL. I insisted on taking photos of all the doctors, and filled out all the final paperwork, including saying yes to feeding tube, breathing tube, resuscitation and no to organ donor. They had prepared several units of blood, after doing 3 blood tests over several days to get my specific blood type data.
After the prep room, I was wheeled into the OR, and just before told my parents that I would see them soon. Everything was setup in the OR as I had requested. They showed me the huge LCD panels with MRI scans, the light panels covered everywhere with MRI scans, and pictures of my face, the stereotactic equipment, and I even insisted on seeing the special saw for cutting through the bone. I already knew from you about the Ti wire inserts, so I did not ask about those. I insisted to be introduced to all the doctors (the resident was Zachary L. Hickman, who would after the surgery always be one of the first to check on me in the morning) and nurses by name (I forgot the names of the nurses), and I insisted again on having me walk through the procedure. They would sedate me just for the pain, under restraint, then open a hole in my skull, carefully expose the brain tissue, and then wake me up to do testing on the cortex, before sedating me again for the remainder of the procedure. There would be no general anastasia. The only thing they did not tell me was that they would insert a catheter into my urethra. They moved me to the OR table. Finally, I had was satisfied, and I told them "I just want to make sure that you all would give their 100% to make sure to get the best operation possible". Dr. Bruce asked me if he could start, and the last thing I remember was that I told them: "Yes, I am ready, lets go ahead".
The surgery took 2 hours and 10 minutes, and Dr. Bruce estimated later that he removed about 99.3% of the tumor. My parents were shocked when they were called after 2 hours and 10 minutes, fearing the worst for me, because the procedure was supposed to be much longer.
[The way my mother tells her story is that it was the worst shock in her life, because she thought something must have gone terribly wrong].
Afterwards, I remember waking up in the recovery room, where my parents were there, and my father was scolded for taking pictures of me. I wanted to get pretty pissed at the staff but just said "must be some privacy issues", so we pulled the curtains shut and photographed away (with my little SLR Nikon). I never needed any blood, or breathing, or feeding tubes. Surgery went perfectly well. I had also insisted for them to tape a picture of a specific Buddha over my heart, and I concentrated on that throughout the surgery. [Of course, I have this picture still, with tape and all, and I will treasure it for as long as I live.]
After the recovery room, they hauled me to another MRI, that one on the same floor (a 3T magnet), and then back to the recovery. My parents left for the night at that point, and I was wide-awake, finally moving into the neurosurgery ICU. I felt a triumph, and I was screaming at the top of my lungs triumphantly somewhere around 1am: "I am going to the NICU! I am going to the NICU!" Some of the nurses complained, and I told her that she was not being very supportive of me, and soon half the recovery room was chanting right along with me. I am sure that I was disturbing some of the patients, but it met everything in the world to me. I met two of the patients later on, and they told me that they felt so energized by my example that they imitated me, and for the rest of the night people were rooting each other to get out of the recovery room.
The NICU was the best time I ever had in a hospital. Gary the nurse was my savior. You WANT him to be your nurse! I finally slept for the first time for almost 2 weeks without any headaches at all.
After the NICU, I went off to the acute care unit, which was a catastrophe, with furniture construction at midnight in front of my room, and they had a international phone right in front of my room, with people talking, screaming, 24/7. Anyhow, on Friday 10/9 in the evening after much testing and lobbying by various doctors, I was admitted to the rehab unit, for a scheduled 2 week stay. I had my first PT session on 10/9, barely able to walk with two IVs in tow, and the first session in the rehab unit (after being medically stable except for a UTI that I and my parents blame on the nursing staff) on Sat. afternoon. At that point I was able to walk with a walker. On Sunday, Frank showed up and did some acupuncture treatment in the evening. On Monday, I refused the wheelchair, insisting on the walker, and I was cleared to roam the hospital without a nurse or without a walker on Monday evening. On Tuesday, I wore out both my PT, insisting that they would do my exercises that I was doing with Frank, and instead my OT decided to take me on a walk together with another OT. I spent one hour outside, going to a Starbucks, getting some petty cash and buying some nice fruits from a street vendor, before seeing a neurophysiologist and speech therapist. By Tues. evening 10/13 it was clear that they would discharge me, and we settled on Thurs. 10am. I had little to do on Wed., demonstrating to Dr. Brenda Mallory (the had of rehab) that I could in fact walk on my toes, or my heels. So the two weeks really became a three-day treatment.”
Note for 11/1/09:
This letter was originally written on 10/21. I realize now of course how much my parents were fighting me to keep me in the hospital, and that almost every resident in neurosurgery visited me, as did several of the faculty, and later also from the rehabilitation. The ordeal of staying in a hospital included being afraid for my life by the night nurses. Some of the day nurses were not quite up to snuff, one (Vanessa) trying to give me a morphine pill that fell on the floor! [I found out that morphine (either IV or oral) works much better for me then the dreaded percocets in its various incarnation] This is an issue CUMC needs to address. Another aspect is being constipated for 10 days, and it took almost another two weeks to clear that debris out of my body.
My days since returning from the hospital have been very busy with working out a treatment plan from about 400 various cancer fighting protocols, and working with Frank Huo on meditation and exercises. My natural treatment protocol currently includes the Budwig diet (flaxseed oil and cottage cheese), a specially formulated treatment plan using curcumin, the active ingredient in Turmeric, as well Chinese herbal antitumor agents. My mother spent most of her time with me in the hospital, and my father was busy with getting the apartment in Flushing, NY ready for all of us.
Wednesday, October 14, 2009
Discharged...
From the depth of my heart, I want to thank all the doctors, nurses, and staff here at CUMB; foremost, Dr. Jeff Bruce and his team (it all seems like a blur), Dr. Lai, the neurooncologist, who will be my primary contact for follow-ups, and Dr. Mallory and her excellent staff from the Rehab Unit.
This whole experience has humbled me deeply and opened my eyes in ways that are hard to describe.
With a joyous heart, I am returning to my new “home” in Flushings, NYC to plan the next phase of my journey.
This whole experience has humbled me deeply and opened my eyes in ways that are hard to describe.
With a joyous heart, I am returning to my new “home” in Flushings, NYC to plan the next phase of my journey.
Monday, October 12, 2009
A special Columbus Day
I finally have time to update everyone on my status.
I underwent neurosurgery on October 5th, 2009 between ~2-5pm under the very capable hands of Dr. Jeffrey Bruce, MD, Professor of Neurosurgery and Co-Director of the Brain Tumor Center at Columbia University Medical Center. Not only was he able to remove about 99.3% of the tumor – thanks Dr. Bruce, and thanks to Dr. Daniel Wecht at UPMC for the referral, but he is a very open to my alternative approach having a research interest in immune response.
The most immediate response has been that I have had no headaches for the last 6 days, and feel infinitely better than even on the morning of October 5th.
The pathology report confirmed that this was a grade-4 Glioblastoma Multiforme (GBM) cancer with some very unusual properties, as I am finding out and will report on some other time. The scary part was to hear that the GBM had grown from ~4.6cm on 9/18/09 to almost 7cm on 10/1/09, or more than tripled in volume in ~10 days, with significant brain shift and attending pressure on the brain stem. BTW, the typical reported doubling time for cancer cells (for smaller tumors) is between 2-4 days, as reported in the literature, but that is typically for smaller tumors and the process is of course growth limiting. Anyhow, my mental capabilities were deteriorating very quickly.
After surgery, I went off to the Recovery room, then the Neurosurgical Intensive Care (NICU - that was a delight !). Somewhere they managed to take another MRI scan that showed a fantastic surgery.
Then sometime off to acute care (BAD!): The problem is that it is a non-stop noisy place, with furniture assembly with hammering and drilling at 10pm, toilet cleaning at midnight, almost hourly measurements of the “vitals” like temp, blood-pressure, and blood sugar (they prick your finger every time to draw blood, little vampires... Then off course they come in shine bright lights to check your pupils every few hours at night, bring you the 10 or so different meds, ask you questions like what day it is, my birthday, etc. then the doctors come in starting at <5am, and the same again and again – well you get the idea. The night staff for the acute care is basically hired off the street (and it shows), and some almost got me killed (including refusing me supplemental oxygen at one point (I took percocet for the first time in my life, 20 min earlier) saying it required “doctor’s” orders (not true), while I could not breath, screaming at me, etc.). They were rude, did not follow requests like getting me warm water to drink, or refused to get the doctor ( I ended up with a UTI - darn) but that is a different blog entry. I had to call my mother in the middle of the night more than once, and thus she spent 5 nights in a cot next to me, getting ~2 hours of sleep a night. The treatment of patients in the acute care at Columbia Univ Presbyterian) is a total catastrophe (or if you like it is a four letter word), especially at night. I have talked to several patients since then, and not one had a good experience there.
On Friday night (10/9/09), I was transferred to the Rehabilitation Unit (courtesy of Randolph Hearst - bless him) with their own permanent and excellent (day and night) nursing staff.
I am working hard towards my recovery. I had some proprioception issues in my left arm, hand, leg and foot. I had an almost useless left hand on Friday. No speech problem, vision problem, etc. There are some very subtle memory problems, but NO evidence for any permanent damage from the tumor or the surgery! Thanks again to Dr. Bruce, and also counting me to be very lucky!
I am having occupational and physical therapy (O/T and P/T) for 3 hours a day, on Sat and today, etc. On Friday, I was in the wheelchair.
Exponential improvement: Today I am walking down the corridor, typing with both hands on my MBP, doing my Chinese “Yuanji” exercises wearing out the O/T :-) and meditation (well not all at the same time though), and hopefully looking at a discharge date later this week. The goal is that I will be independent to care for myself.
Besides all this recovery, I am trying to learn about treatment options, and also about “my” cancer. Even though 99.3% is gone out of a mass of ~10^11 cells, I still have ~1 billion cancer cells in my brain, etc. (just a quick estimate)
My parents furnished the apartment in Flushings, NYC, that I rented on 10/1/09 (ironic is it not?!?), so I have a place to call HOME!
I have to thank soo many different people and will do this in a proper time and a proper way! This was supposed to be a quick update, and I will start writing about next treatment options, but you probably kind of know where I am heading.
Columbus Day 2009 will thus always be remembered as a very special day in my life...
I underwent neurosurgery on October 5th, 2009 between ~2-5pm under the very capable hands of Dr. Jeffrey Bruce, MD, Professor of Neurosurgery and Co-Director of the Brain Tumor Center at Columbia University Medical Center. Not only was he able to remove about 99.3% of the tumor – thanks Dr. Bruce, and thanks to Dr. Daniel Wecht at UPMC for the referral, but he is a very open to my alternative approach having a research interest in immune response.
The most immediate response has been that I have had no headaches for the last 6 days, and feel infinitely better than even on the morning of October 5th.
The pathology report confirmed that this was a grade-4 Glioblastoma Multiforme (GBM) cancer with some very unusual properties, as I am finding out and will report on some other time. The scary part was to hear that the GBM had grown from ~4.6cm on 9/18/09 to almost 7cm on 10/1/09, or more than tripled in volume in ~10 days, with significant brain shift and attending pressure on the brain stem. BTW, the typical reported doubling time for cancer cells (for smaller tumors) is between 2-4 days, as reported in the literature, but that is typically for smaller tumors and the process is of course growth limiting. Anyhow, my mental capabilities were deteriorating very quickly.
After surgery, I went off to the Recovery room, then the Neurosurgical Intensive Care (NICU - that was a delight !). Somewhere they managed to take another MRI scan that showed a fantastic surgery.
Then sometime off to acute care (BAD!): The problem is that it is a non-stop noisy place, with furniture assembly with hammering and drilling at 10pm, toilet cleaning at midnight, almost hourly measurements of the “vitals” like temp, blood-pressure, and blood sugar (they prick your finger every time to draw blood, little vampires... Then off course they come in shine bright lights to check your pupils every few hours at night, bring you the 10 or so different meds, ask you questions like what day it is, my birthday, etc. then the doctors come in starting at <5am, and the same again and again – well you get the idea. The night staff for the acute care is basically hired off the street (and it shows), and some almost got me killed (including refusing me supplemental oxygen at one point (I took percocet for the first time in my life, 20 min earlier) saying it required “doctor’s” orders (not true), while I could not breath, screaming at me, etc.). They were rude, did not follow requests like getting me warm water to drink, or refused to get the doctor ( I ended up with a UTI - darn) but that is a different blog entry. I had to call my mother in the middle of the night more than once, and thus she spent 5 nights in a cot next to me, getting ~2 hours of sleep a night. The treatment of patients in the acute care at Columbia Univ Presbyterian) is a total catastrophe (or if you like it is a four letter word), especially at night. I have talked to several patients since then, and not one had a good experience there.
On Friday night (10/9/09), I was transferred to the Rehabilitation Unit (courtesy of Randolph Hearst - bless him) with their own permanent and excellent (day and night) nursing staff.
I am working hard towards my recovery. I had some proprioception issues in my left arm, hand, leg and foot. I had an almost useless left hand on Friday. No speech problem, vision problem, etc. There are some very subtle memory problems, but NO evidence for any permanent damage from the tumor or the surgery! Thanks again to Dr. Bruce, and also counting me to be very lucky!
I am having occupational and physical therapy (O/T and P/T) for 3 hours a day, on Sat and today, etc. On Friday, I was in the wheelchair.
Exponential improvement: Today I am walking down the corridor, typing with both hands on my MBP, doing my Chinese “Yuanji” exercises wearing out the O/T :-) and meditation (well not all at the same time though), and hopefully looking at a discharge date later this week. The goal is that I will be independent to care for myself.
Besides all this recovery, I am trying to learn about treatment options, and also about “my” cancer. Even though 99.3% is gone out of a mass of ~10^11 cells, I still have ~1 billion cancer cells in my brain, etc. (just a quick estimate)
My parents furnished the apartment in Flushings, NYC, that I rented on 10/1/09 (ironic is it not?!?), so I have a place to call HOME!
I have to thank soo many different people and will do this in a proper time and a proper way! This was supposed to be a quick update, and I will start writing about next treatment options, but you probably kind of know where I am heading.
Columbus Day 2009 will thus always be remembered as a very special day in my life...
Sunday, October 4, 2009
Adifferent path
All
Afew days ago I dlipped in the bathromm of my hotel in NYC and hit the left side of my head. Thencalled 911 foe an ERIn NY Queens Hospital. They di an ct scan an som other testing
Since1/1/-09 I’m in Columbia Univ Medical enter under the care othe excellent care a Presbeteryan Hospital under the care of zDr.Bruce
Facts :MY GBM had almost doubled in mass in the last 10 dys and the edema
increased as well,as did the pressure in my braincase
My prents came toNYC and are staying ina hotel before we all move to my new apartment to Flushings NY in about 10 days
I will undergo Emergency surgery tomorrow at 11am to remove my GBMfor 2-5 hours
I will then be in the NruroICU for 24 fours &then radiation and chemo starting in aout 10/12 combined w my continued Chinese herbal, energy& meditation treatment
Thi is not the path I wanted but I need to survive this terrible cancer, so the surgery is here to help me fight this disease.
Never Give up!!!Always fight!!! There is always HOPE
Wish me the best!I only have one job: survive!!!!
Afew days ago I dlipped in the bathromm of my hotel in NYC and hit the left side of my head. Thencalled 911 foe an ERIn NY Queens Hospital. They di an ct scan an som other testing
Since1/1/-09 I’m in Columbia Univ Medical enter under the care othe excellent care a Presbeteryan Hospital under the care of zDr.Bruce
Facts :MY GBM had almost doubled in mass in the last 10 dys and the edema
increased as well,as did the pressure in my braincase
My prents came toNYC and are staying ina hotel before we all move to my new apartment to Flushings NY in about 10 days
I will undergo Emergency surgery tomorrow at 11am to remove my GBMfor 2-5 hours
I will then be in the NruroICU for 24 fours &then radiation and chemo starting in aout 10/12 combined w my continued Chinese herbal, energy& meditation treatment
Thi is not the path I wanted but I need to survive this terrible cancer, so the surgery is here to help me fight this disease.
Never Give up!!!Always fight!!! There is always HOPE
Wish me the best!I only have one job: survive!!!!
Thursday, September 24, 2009
On the meaning of Life
First a quick note: I changed the rules on comments, they are no longer moderated and you an leave anonymous comments as well, but I will read them of course :-)
An Old Story
Let me start with a modern version of an old joke that hawks back in some form to many different cultures and was written down sometime around Charlemagne in about 850 AD.
So here to introduce the story is Pete Worden, just a general can with his Ten-Hut!
The joke is about an ambitious and pious doctor, highly successful, working relentlessly, living off his seemingly infinite energy, enjoying the nightly bottle of wine with his wife, and relaxing with a nice cigar after his round of golf with his fellow doctors. One day suddenly gets massive arthritis in his knees, and sure enough he gets knee replacement surgery and “marvels about the newest implants”, and in no time he is “back”, and continues as usual. Then suddenly he is hit by falling eyesight, has to interrupt his work, and this time, there was less that the fellow doctors could do, but he “adjusts”, and throws himself at his work, and all is “just fine” he tells everyone with a wink. Finally he gets cancer, and battles it for a few years with surgery, radiation and chemo, now has to stop his cigars, while a bit down from all the chemo he is getting, but he is being tough an proud to “fight the battle with cancer”, and of course enjoys the bottles of wine. But soon the cancer comes back, this time everywhere, and he dies a slow painful death, and as he stands in front of God, he loudly complains and says: “Why oh God have you forsaken me? You could at least have told me that this was coming”, to which God replied: “Did I not make your knee weak, and rob you of your eyesight, and then you were still not listening, I sent you cancer, but still you insisted, on your path. So why my son did you not listen to me then?” Well, this might sound like one of those “Chicken soup for the Soul” stories, but there is a profound personal lesson here, for each and every one of us: While outwardly healthy, I ignored various ailments, deteriorating nearsightedness, but it took a glioblastoma to get MY attention. In your case, it may be a bad liver, or a kidney stone. At some point you are the doctor in the story, the joke is on you as it is on me right now. Your subconscious mind is trying to get your attention. And in case you missed the point of this: the solution my friends if of course to change our lives radically. In my case I have been ignoring symptoms for years if not decades.
Most off us are engaged in our daily struggles of life, where we compare ourselves endlessly to others in trivialities like status and money, in what we wear, or what we drive, or what responsibilities we have, or how funny our stories are, or how much access we have to our bosses or other people of influence, or how we can put fear into someone who works for us with an emotional outburst to make a point (and to make us feel good that moment, only to often regret it later on) – all these endeavors are actually quite meaningless and silly, just trying to superficially impress others. What is their purpose? These struggles (which include bending to threats, or dishing out the angry commands) just make us prisoners of an illusionary world, and we accumulate bad karma that makes us physically sick. It may be subtle, it may be profound, it may be unhappiness in our marriages, or sexual frustration, or problems with children whose connection you lost, or never had in the first place, or loneliness that we try to drown out.
The Yuanji Energy system will tell you that the body will be sick where the mind is sick. We do all this to have some sense of control (you really think so?) -- negative energy drains on our souls. They are deceptive, and they are deadly. And somewhere deep down we may acknowledge that we are not being us, not being authentic, and yet we continue on that path for years or decades, except quite often for this little inner voice. And that little inner voice we drown out with being busy (so we tell ourselves little storylines and lies: sorry I have to get that project done, or buy that car, or get this promotion, or by god, I am going to stick it to Charlie that incompetent fool). Or we use alcohol or other vices of the soul to drown out that inner voice, and just like alcoholic drunks, we can’t see clearly, but still believe that we are sober, and as we go on we believe the illusion that we are somehow in control. Thus many of not most people end up living lives of emptiness, despair and inner pain that they mask with their supposed status in society and their supposed power, or the use of gambling, food addiction (and the wonderful short-term escape into eating and the satisfaction that it brings), alcohol, drugs, or sex (just think of all the sexual sandals in DC, you on' think they are about spiritual joining? do you now? It is about ego & big holes in our hearts), etc. trying to fill a void in your heart and in our karma.
We often think tomorrow is another day, that tomorrow we will do this, or that, or that we will be different (I promise!). But tomorrow comes and goes, becoming years, later decades, and the real change never comes, and one day we may realize that we have wasted our lives on trivialities. I know that I could have become Professor Isak Bord, the protagonist of Ingmar Bergman’s classic masterpiece “Wild Strawberries”. Watch it if you have not, you won’t be disappointed, or you may find yourself to be Antonius Block, the knight and protagonist of another existential Bergman classic, the “Seventh Seal”. Playing a round of chess with Death, is the ultimate fool’s errand. You will never win that game.
What? No half-solutions?
One cancer patient’s daughter told me about her father: “Well, my father completely changed his lifestyle in response to his cancer. He stopped drinking and smoking his 2 packs a day, and he switched to cigars.” THAT is NOT change my friends - that is foolishness, and quite predictably, guess how she finishes her sentence: “now the cancer is back.” Exchange smoking with drinking, it does no matter. The fundamental message is that the cancer is a message by your body. If you ignore it, the cancer will come back, maybe not at the same place. I will explain the reasoning behind it in a later post.
If you ignore your inner voice, at our own peril, the joke will be on you. You will die a premature death. Being healthy is not about incremental changes, or you will die incrementally. The human body in its natural state wants to be healthy. I have been half-healthy, as did the doctor in the joke at the beginning, but try as I did for almost a half century, there is no such thing as half-healthy. The truth will come out. It does no compute, and if you really think about this, you’ll find a lot of truth in this comparison: you cannot be half-honest. I cannot make it clearer.
Carpe Diem!
Don’t waste your time, tomorrow is today, carpe diem! In many cases radical lifestyle changes are all that is needed, but halfway is not an option. Pete K’s told me the story of his father, who in his late 50’s discovered that he had inoperable stage-4 Pancreatic cancer, was given something like 6 weeks to live, and decided to change his life 180°, and started to watch Three Stooges movies 16 hours a day, laughing the cancer into submission. It worked for him, and he died from an unrelated accident. Or take Pat, who had cancer and decided to go through with surgery (but no chemo), but then focused on his lifestyle, and made a 180° change on his diet, and is now a much happier and healthier person.
And if you need intervention with a really serious disease like cancer, or say Hepatitis C, and you are interested and determined to go down a path of complete recovery for the whole you along the Yuanji system the one I chose, I am here to help. I made a solemn oath to the universe and to Frank and my spiritual helpers to help others in need as my situation allows. Just now, I am trying to convince a friend of friend of one of my nurses, who has a metastasized and gruesome cancer to come to NYC.
Broadway Show
I have seen several billionaires driving down in their Rolls-Royce’s or Bentley’s on Park Ave in Manhattan, showing off that they in fact are swimming in money, and have a refined taste for all the fine things in life, etc., but what I see most of the time are faces twisted by pain, contorted by inner daemons, all of that and all that wealth and its meaning can be lost, in one heartbeat – you cannot take any of these things with you. I look more like a traveling monk than an accomplished scientist in my loose fitting training trousers, large T-shirt, and barefoot sandals – a monk with an enormous smile on his face for sure, who thinks that most human beings are so funny and so utterly ridiculous in their daily attempts to impress others, trying to put on a show, all the while being twisted by inner demons, idling away their lives by being busy lying to themselves. I am not sure if I should laugh or cry. Maybe both are appropriate here. I don’t have to go to Broadway - this is much better, free, and real! You see, unless you are actually helping to make this world a better place, you are out on the ultimate fools’ errand, my friends, and you will be haunted by daemons, ones that are quite real.
Ever since I came to NYC, this city with all its diversity and its daily struggles has become a place of refuge (hard to believe anyone would ever say that about NYC). It is really amazing to find out how little you really need if you stare death in the eye for a month. Let me explain this, because unless you actually go through this, it is a bit hard to understand. There is always the possibility, especially now that I am off the decadron that the brain edema could come back, in which case I may need emergency brain surgery. By now, I should only have 2 weeks left to surgery, and possible rendezvous with a death squad 14 months hence. But I have so far defeated most predictions, have improved, precisely because I have changed my life radically. I work as hard as I can, to do what Frank tells me to do (he always keeps pushing). And yet, while I am happy beyond words, and grateful, this is not easy a it sounds my friends, because the stark reality is that death has always been 24-36 hours away for the past 32 days, and will continue to be close by, until my brain tumor is gone, and then there will be a moment to relax. It is also hard, because there are enormous changes going on inside me, very confusing ones, and on so many levels.
Thanks o my readers!
I have also been humbled by all the outpouring of love and support from people, friends and total strangers as well. Former girlfriends I have not heard from in almost 20 years have written to me, as have countless others. I want to thank all of you for your support in prayers or in phone calls, notes and emails. While I have no time to respond to each of you, please rest assured that I read every one of them.
Human suffering
I have learned so much in the last few weeks, and I have seen so much suffering out there. I have heard amazing stories of courage. I have heard of, and seen people fight on, or give up and die, I have seen immeasurable suffering of people going through surgery after surgery, I have embraced patients who died within the day, some content with a happy smile on their faces, others in pain and uncertain about death. Religion tries to answer a deep human desire: what will we do after we die? What becomes of us? I have learned compassion for others’ suffering, and embraced those in pain, and I hunger to learn more about the universe and to learn about Yuanji. My journey includes worlds on an unseen plane, as I may describe at some later point. It is too early now. It is my story to be sure, yet vastly more fantastic than any Sci-Fi story I have ever read, or any movie I ever saw.
A short Personal To-Do list
There are tasks that suddenly have become immensely important – like my plan with my friend Shawn Findlan to connect the next three billion people to the internet in places like Sub-Saharan Africa and South America, and Asia, and to help to alleviate the suffering on this planet. It is the time for an idea that has brewed in my head for a few years, and suddenly all the pieces fall into place.
There are many other important tasks to do, like helping my individual fellow human beings to end once and for all their pain and suffering on their karma as I mentioned above, to care for the infinite many life forms, and to care for the very planet itself (what some would call Gaia). This is not some alarmist statement. It is a simple fact that we hold the destiny of most life on our planet in our hands. And make no mistake, we are in a very precarious situation on this planet, with the mass extinction of species, and all the human greed of more profits ( the world of “me, me, me” I wrote about previously). Just lets pause for a moment and think: What do we do with all the trillions and trillions of dollars and euros. How do we use it, for what purpose? It too is just temporary, just going on to show that the only things that have lasting impact are technology, science, arts, ideas, and culture, and how we care for the planet. The splendors of Babylon, or Rome have long passed, their empires not more than some ruins, yet what is left are ideas, like the use of 60 as a numerical basis (60 seconds per minute, 360 degrees for a full circle) in the case of Babylon, or the ideas of a central water supply & sewage system (the Cloaca Maximus in Rome has been in continuous use since about 600BC). My point is a very simple one: if we use our capital wisely, there will be a tomorrow or a 1000 years from now, not only for the human species a we know it. If not, we as a planet could end up like Easter Island: desolate, deserted, and devoid of most life. That is a stark and very real possibility. Don't fool yourselves!
We need to keep the balance of the flow of energy on our home planet that gave life to us through the sun and the moon, and will continue to do so for the next 5 billion years, whether with or without humans may be decided in this century.
My path
Thus everything that came before my brain tumor just feels like an insignificant act, just a quick blink of an eye, before I really started to live, be myself, and really aware of not only who I am, but to know myself.
There is no turning back, because I know with total certainty that I would die. Beating this tumor is necessary and hard enough, but not sufficient. Remember what I said since the very beginning: The brain tumor is only a symptom of a much bigger problem with my body, soul & spirit. I have stared death in the eye, every moment of every day, it never left my side, it is here to keep me focused.
My path then is so removed from where I was – it is path to total inner and outer freedom of my body, soul and spirit, so one day I will be able to be the master of my own destiny, never to answer to anyone except the Tao and the universe, and I have sworn a solemn oath to help life, humanity and our planet, and to dedicate my life on issues that really mean something.
Thus, I don’t say this lightly, but I have to say it: there is also no telling when or where this journey will end. It will run its course, one day at a time, one goal at a time. So anything or anyone who disrupts my journey is figuratively holding a loaded and cocked gun to my head, a direct and unacceptable threat to my life. Make no mistake – I have become absolutely fierce in my determination to live and to see this through.
So here I am between two meditation sessions, at total peace with myself, and a clear goal and path in front of me. Or as my colleague & friend Brian Hibbeln has said quite eloquently, when he called me the other day: “ I called expecting to speak to a dying man, and instead I am talking to the happiest man on the Eastern Seashore.” Indeed Brian, indeed, and lucky too.
An Old Story
Let me start with a modern version of an old joke that hawks back in some form to many different cultures and was written down sometime around Charlemagne in about 850 AD.
So here to introduce the story is Pete Worden, just a general can with his Ten-Hut!
The joke is about an ambitious and pious doctor, highly successful, working relentlessly, living off his seemingly infinite energy, enjoying the nightly bottle of wine with his wife, and relaxing with a nice cigar after his round of golf with his fellow doctors. One day suddenly gets massive arthritis in his knees, and sure enough he gets knee replacement surgery and “marvels about the newest implants”, and in no time he is “back”, and continues as usual. Then suddenly he is hit by falling eyesight, has to interrupt his work, and this time, there was less that the fellow doctors could do, but he “adjusts”, and throws himself at his work, and all is “just fine” he tells everyone with a wink. Finally he gets cancer, and battles it for a few years with surgery, radiation and chemo, now has to stop his cigars, while a bit down from all the chemo he is getting, but he is being tough an proud to “fight the battle with cancer”, and of course enjoys the bottles of wine. But soon the cancer comes back, this time everywhere, and he dies a slow painful death, and as he stands in front of God, he loudly complains and says: “Why oh God have you forsaken me? You could at least have told me that this was coming”, to which God replied: “Did I not make your knee weak, and rob you of your eyesight, and then you were still not listening, I sent you cancer, but still you insisted, on your path. So why my son did you not listen to me then?” Well, this might sound like one of those “Chicken soup for the Soul” stories, but there is a profound personal lesson here, for each and every one of us: While outwardly healthy, I ignored various ailments, deteriorating nearsightedness, but it took a glioblastoma to get MY attention. In your case, it may be a bad liver, or a kidney stone. At some point you are the doctor in the story, the joke is on you as it is on me right now. Your subconscious mind is trying to get your attention. And in case you missed the point of this: the solution my friends if of course to change our lives radically. In my case I have been ignoring symptoms for years if not decades.
Most off us are engaged in our daily struggles of life, where we compare ourselves endlessly to others in trivialities like status and money, in what we wear, or what we drive, or what responsibilities we have, or how funny our stories are, or how much access we have to our bosses or other people of influence, or how we can put fear into someone who works for us with an emotional outburst to make a point (and to make us feel good that moment, only to often regret it later on) – all these endeavors are actually quite meaningless and silly, just trying to superficially impress others. What is their purpose? These struggles (which include bending to threats, or dishing out the angry commands) just make us prisoners of an illusionary world, and we accumulate bad karma that makes us physically sick. It may be subtle, it may be profound, it may be unhappiness in our marriages, or sexual frustration, or problems with children whose connection you lost, or never had in the first place, or loneliness that we try to drown out.
The Yuanji Energy system will tell you that the body will be sick where the mind is sick. We do all this to have some sense of control (you really think so?) -- negative energy drains on our souls. They are deceptive, and they are deadly. And somewhere deep down we may acknowledge that we are not being us, not being authentic, and yet we continue on that path for years or decades, except quite often for this little inner voice. And that little inner voice we drown out with being busy (so we tell ourselves little storylines and lies: sorry I have to get that project done, or buy that car, or get this promotion, or by god, I am going to stick it to Charlie that incompetent fool). Or we use alcohol or other vices of the soul to drown out that inner voice, and just like alcoholic drunks, we can’t see clearly, but still believe that we are sober, and as we go on we believe the illusion that we are somehow in control. Thus many of not most people end up living lives of emptiness, despair and inner pain that they mask with their supposed status in society and their supposed power, or the use of gambling, food addiction (and the wonderful short-term escape into eating and the satisfaction that it brings), alcohol, drugs, or sex (just think of all the sexual sandals in DC, you on' think they are about spiritual joining? do you now? It is about ego & big holes in our hearts), etc. trying to fill a void in your heart and in our karma.
We often think tomorrow is another day, that tomorrow we will do this, or that, or that we will be different (I promise!). But tomorrow comes and goes, becoming years, later decades, and the real change never comes, and one day we may realize that we have wasted our lives on trivialities. I know that I could have become Professor Isak Bord, the protagonist of Ingmar Bergman’s classic masterpiece “Wild Strawberries”. Watch it if you have not, you won’t be disappointed, or you may find yourself to be Antonius Block, the knight and protagonist of another existential Bergman classic, the “Seventh Seal”. Playing a round of chess with Death, is the ultimate fool’s errand. You will never win that game.
What? No half-solutions?
One cancer patient’s daughter told me about her father: “Well, my father completely changed his lifestyle in response to his cancer. He stopped drinking and smoking his 2 packs a day, and he switched to cigars.” THAT is NOT change my friends - that is foolishness, and quite predictably, guess how she finishes her sentence: “now the cancer is back.” Exchange smoking with drinking, it does no matter. The fundamental message is that the cancer is a message by your body. If you ignore it, the cancer will come back, maybe not at the same place. I will explain the reasoning behind it in a later post.
If you ignore your inner voice, at our own peril, the joke will be on you. You will die a premature death. Being healthy is not about incremental changes, or you will die incrementally. The human body in its natural state wants to be healthy. I have been half-healthy, as did the doctor in the joke at the beginning, but try as I did for almost a half century, there is no such thing as half-healthy. The truth will come out. It does no compute, and if you really think about this, you’ll find a lot of truth in this comparison: you cannot be half-honest. I cannot make it clearer.
Carpe Diem!
Don’t waste your time, tomorrow is today, carpe diem! In many cases radical lifestyle changes are all that is needed, but halfway is not an option. Pete K’s told me the story of his father, who in his late 50’s discovered that he had inoperable stage-4 Pancreatic cancer, was given something like 6 weeks to live, and decided to change his life 180°, and started to watch Three Stooges movies 16 hours a day, laughing the cancer into submission. It worked for him, and he died from an unrelated accident. Or take Pat, who had cancer and decided to go through with surgery (but no chemo), but then focused on his lifestyle, and made a 180° change on his diet, and is now a much happier and healthier person.
And if you need intervention with a really serious disease like cancer, or say Hepatitis C, and you are interested and determined to go down a path of complete recovery for the whole you along the Yuanji system the one I chose, I am here to help. I made a solemn oath to the universe and to Frank and my spiritual helpers to help others in need as my situation allows. Just now, I am trying to convince a friend of friend of one of my nurses, who has a metastasized and gruesome cancer to come to NYC.
Broadway Show
I have seen several billionaires driving down in their Rolls-Royce’s or Bentley’s on Park Ave in Manhattan, showing off that they in fact are swimming in money, and have a refined taste for all the fine things in life, etc., but what I see most of the time are faces twisted by pain, contorted by inner daemons, all of that and all that wealth and its meaning can be lost, in one heartbeat – you cannot take any of these things with you. I look more like a traveling monk than an accomplished scientist in my loose fitting training trousers, large T-shirt, and barefoot sandals – a monk with an enormous smile on his face for sure, who thinks that most human beings are so funny and so utterly ridiculous in their daily attempts to impress others, trying to put on a show, all the while being twisted by inner demons, idling away their lives by being busy lying to themselves. I am not sure if I should laugh or cry. Maybe both are appropriate here. I don’t have to go to Broadway - this is much better, free, and real! You see, unless you are actually helping to make this world a better place, you are out on the ultimate fools’ errand, my friends, and you will be haunted by daemons, ones that are quite real.
Ever since I came to NYC, this city with all its diversity and its daily struggles has become a place of refuge (hard to believe anyone would ever say that about NYC). It is really amazing to find out how little you really need if you stare death in the eye for a month. Let me explain this, because unless you actually go through this, it is a bit hard to understand. There is always the possibility, especially now that I am off the decadron that the brain edema could come back, in which case I may need emergency brain surgery. By now, I should only have 2 weeks left to surgery, and possible rendezvous with a death squad 14 months hence. But I have so far defeated most predictions, have improved, precisely because I have changed my life radically. I work as hard as I can, to do what Frank tells me to do (he always keeps pushing). And yet, while I am happy beyond words, and grateful, this is not easy a it sounds my friends, because the stark reality is that death has always been 24-36 hours away for the past 32 days, and will continue to be close by, until my brain tumor is gone, and then there will be a moment to relax. It is also hard, because there are enormous changes going on inside me, very confusing ones, and on so many levels.
Thanks o my readers!
I have also been humbled by all the outpouring of love and support from people, friends and total strangers as well. Former girlfriends I have not heard from in almost 20 years have written to me, as have countless others. I want to thank all of you for your support in prayers or in phone calls, notes and emails. While I have no time to respond to each of you, please rest assured that I read every one of them.
Human suffering
I have learned so much in the last few weeks, and I have seen so much suffering out there. I have heard amazing stories of courage. I have heard of, and seen people fight on, or give up and die, I have seen immeasurable suffering of people going through surgery after surgery, I have embraced patients who died within the day, some content with a happy smile on their faces, others in pain and uncertain about death. Religion tries to answer a deep human desire: what will we do after we die? What becomes of us? I have learned compassion for others’ suffering, and embraced those in pain, and I hunger to learn more about the universe and to learn about Yuanji. My journey includes worlds on an unseen plane, as I may describe at some later point. It is too early now. It is my story to be sure, yet vastly more fantastic than any Sci-Fi story I have ever read, or any movie I ever saw.
A short Personal To-Do list
There are tasks that suddenly have become immensely important – like my plan with my friend Shawn Findlan to connect the next three billion people to the internet in places like Sub-Saharan Africa and South America, and Asia, and to help to alleviate the suffering on this planet. It is the time for an idea that has brewed in my head for a few years, and suddenly all the pieces fall into place.
There are many other important tasks to do, like helping my individual fellow human beings to end once and for all their pain and suffering on their karma as I mentioned above, to care for the infinite many life forms, and to care for the very planet itself (what some would call Gaia). This is not some alarmist statement. It is a simple fact that we hold the destiny of most life on our planet in our hands. And make no mistake, we are in a very precarious situation on this planet, with the mass extinction of species, and all the human greed of more profits ( the world of “me, me, me” I wrote about previously). Just lets pause for a moment and think: What do we do with all the trillions and trillions of dollars and euros. How do we use it, for what purpose? It too is just temporary, just going on to show that the only things that have lasting impact are technology, science, arts, ideas, and culture, and how we care for the planet. The splendors of Babylon, or Rome have long passed, their empires not more than some ruins, yet what is left are ideas, like the use of 60 as a numerical basis (60 seconds per minute, 360 degrees for a full circle) in the case of Babylon, or the ideas of a central water supply & sewage system (the Cloaca Maximus in Rome has been in continuous use since about 600BC). My point is a very simple one: if we use our capital wisely, there will be a tomorrow or a 1000 years from now, not only for the human species a we know it. If not, we as a planet could end up like Easter Island: desolate, deserted, and devoid of most life. That is a stark and very real possibility. Don't fool yourselves!
We need to keep the balance of the flow of energy on our home planet that gave life to us through the sun and the moon, and will continue to do so for the next 5 billion years, whether with or without humans may be decided in this century.
My path
Thus everything that came before my brain tumor just feels like an insignificant act, just a quick blink of an eye, before I really started to live, be myself, and really aware of not only who I am, but to know myself.
There is no turning back, because I know with total certainty that I would die. Beating this tumor is necessary and hard enough, but not sufficient. Remember what I said since the very beginning: The brain tumor is only a symptom of a much bigger problem with my body, soul & spirit. I have stared death in the eye, every moment of every day, it never left my side, it is here to keep me focused.
My path then is so removed from where I was – it is path to total inner and outer freedom of my body, soul and spirit, so one day I will be able to be the master of my own destiny, never to answer to anyone except the Tao and the universe, and I have sworn a solemn oath to help life, humanity and our planet, and to dedicate my life on issues that really mean something.
Thus, I don’t say this lightly, but I have to say it: there is also no telling when or where this journey will end. It will run its course, one day at a time, one goal at a time. So anything or anyone who disrupts my journey is figuratively holding a loaded and cocked gun to my head, a direct and unacceptable threat to my life. Make no mistake – I have become absolutely fierce in my determination to live and to see this through.
So here I am between two meditation sessions, at total peace with myself, and a clear goal and path in front of me. Or as my colleague & friend Brian Hibbeln has said quite eloquently, when he called me the other day: “ I called expecting to speak to a dying man, and instead I am talking to the happiest man on the Eastern Seashore.” Indeed Brian, indeed, and lucky too.
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