I was searching Madonna's latest song which is No. one in US. It is good and I like it. Then I saw the new about Madonna and Berlin airport. News said she was with her bath rope when passing security. Well she is Madonna so OK but if this is me, they will put me into Mental Hospital!! Then.............
I saw an article right after Madonna news, saying..."The Burmese Ruby Diary was up set at the LAX airport....." I blink my eyes because I thought hummmm...this is sound like me. Indeed it was my article about airport and airline. Then I found another blog (right under my article), who is also very very up set with TSA from LAX airport!! I was happy to see that not only me. See here how the blog goes....................
I am not a good traveler
Aug. 26th, 2008 at 12:14 PM
TSA can kiss my ass.
Do you know who TSA is? This is the group that handles security in airports. I originally wrote something a little more sympathetic, but based on my experiences in LA, I have more to say later.First, the original post.
Working for TSA must be one of the worst jobs in the world.I was entering the security checkpoint at Dulles airport. You know, the first place, where they check your boarding pass and ID. She had some sort of laster pen she ran over my California driver's license, and it seemed to me she lingered a bit much over it.
I've seen all sorts of reactions to my driver's license over the years. Snorts, looks of disbelief, double-takes, and the lingering examination. I always explain it with one short phrase: "Laundry Accident." Even though that isn't the whole truth.The whole truth? I don't carry a purse. I don't carry a wallet either, although that would probably be a good idea.
I carry all my paper money, credit cards, ID (at least, at the time), etc., in my front pocket. This worked for me for years, but then one day, either because of a differently shaped pocket or because my pants were too loose, my driver's license got wedged funny when I sat down and it bent and came away with a crease.Well, after that it happeend again and again because of the irregular shape of the card. Finally I moved the license into my back pocket and it stopped happening. Then one day I left the card in the pocket while doing laundry, but that didn't really affect it. The worst damage had already been done.So, while my driver's license did go through the wash, that isn't really the reason for its current condition. But it's just so much easier and shorter to say "Laundry Accident." Everyone understands. And usually, they get a chuckle out of it.
The TSA lady started to chuckle, but then stopped herself. Wouldn't do to have a humorous shared moment with a potential terrorist, after all. I wonder if her supervisor was watching.and now on to the less sympathetic partSo I have a layover in LA.
Don't know if you're familiar with LA airport, but if you're changing airlines as well as planes, you have to leave the terminal, take a shuttle to another terminal, check in all over again, and go through security. Nobody warned me about that and it pissed me off. Also, there are no signs indicating any of this or how to go about doing it. You have to stop airport personnel and ask them, because apparently they didn't see a need to put up an information booth. So I get over to the other terminal and go through check in. At least the line wasn't very long. But the check-in kiosk was configured differently from every other kiosk I've ever used, even the one for the SAME DAMN AIRLINE up in San Jose. It asked different questions and I wasn't feeling very intellectually alert at this time and had to call over one of the airline personnel to explain things to me. I'm never at my best in these situations, but my high state of piss-off must have triggered alarms in the security person.
Then I made the mistake of helping the elderly gentleman in front of me. He'd handed over his passport to the security checkpoint guy, but not his boarding pass. If you've been through several airports recently, you know that the first security checkpoint always requires your boarding pass and ID. The security person asked for his boarding pass but the old guy wasn't paying attention or something. I leaned forward and said a little more clearly near his ear "They need to see your boarding pass." He retrieved it from his pocket and presented it and was let through. So the security guy starts examining my stuff (crumpled ID and boarding pass) and, making conversation, asks me if the old guy was my father or husband. I really didn't expect this and said huh? Then I processed what he'd asked and said no, I just noticed he needed a little help. So then he looks at me suspiciously and indicates my crumpled ID, to which I make my usual reply, "Laundry Accident." Apparently I meet the profile of a terrorist with crumpled ID who helps old men in line. He called for a superviser to check my ID and I have to stand to the side while others go through. Eventually the guy comes, takes a look, and passes me through without asking any other questions. But it was enough to distract me so I forgot to empty my pockets before passing through the security scanner and of course it beeps. So I realize I have my cell phone and go back and they tell me to put it in its own tray, but one empty tray with a cell phone in it isn't heavy enough so I have to double up the tray and send it through.But again I beeped. So they ask me what else I have in my pocketses and I remember I had spare batteries, as well as change. So I go back and by this time other people are sending their stuff through so I have to get behind them and get ANOTHER tray and fill it with my change and batteries.This time I got through and went to get my stuff and there's this TSA guy at my trays and he's telling me I can't take in the bottle of water (I know this and I normally don't bring water to the airport - I wait and buy it after I get through security - but they'd made me leave the secured area at this fucking airport so I was losing my water) and I say keep it and I'm looking for my cellphone. He's leaning on a stack of three trays and I realize he's grabbed my all-but-empty tray and I tell him they made me put my cell phone by itself in a tray and he let's go so I can lift the top one and there it is. The fucking idiot had placed another tray right on top of it and was leaning on it. Wonder it didn't break.
And let me just say that LAX is in serious need of someone with a brain to put signs up. Nothing they had posted was of any use to me, and the walk to my gate was ridiculous. Oh, and food places that make you pick up and carry your own food and drink to a table when you are a lone traveler with no one to watch your bags for you should be burned to the ground. Fuckheads.I blame George Bush for this.
Comments
( Leave a comment )
aflon wrote:
Aug. 26th, 2008 08:29 pm (UTC)
LAX is a very strange airport. Flying into it from outwith the country is a nightmare - well flying into the States is a nightmare these days. Peter was telling me that he will have to fill in another online form before he travels in January to Guatemala and he is just transitting through the country for a couple of hours, but has to tell the US government just about everything almost down to the size of his shoes. We'll have to do that next March and also when we fly back and transit through LAX to London.
I hate the queuing at immigration. You are herded into a huge hall and have to queue and queue. Then you eventually get to a immigration officer who grills you, finger-prints you and takes your picture. When Sue and I flew in to LAX last February we had to queue for literally hours. I got stuck with a particularly obnoxious little man who did not want to let me into the States. They are not the slightest bit welcoming.Of course I don't know how foreign nationals are treated when they fly into the UK, but of all the countries I have visited the Homeland Security people are by far the most unfriendly and unwelcoming.However the people we visit are more than worth any of the hassles we have encountered at airports.Flying out of LAX is far easier. Everything has worked very smoothly each time we have done that.
However the worst flight out we ever had was at Toronto last year when The Grump booked us on Air India. Because there had been a bomb on an Air India plane bound for Canada back in the 1990's I think it was, we had to through special security. We were not allowed through the regular security checks. Instead we had special officers who searched everything that we carried onto the plane. I was almost expecting to be strip searched. Then when we went into the departure lounge to the gate we were searched yet again and kept in quarantine. If we went out to the loo or shop we had to go through the search process all over again. Never ever will I ever fly Air India again - even though their water was the nicest I have ever tasted.
Link Reply Thread
urgayleswoman wrote:
Aug. 27th, 2008 04:51 pm (UTC)
What a nightmare!
Saturday, August 30, 2008
Friday, August 29, 2008
Mama Mia and Hari Puttar!
I am so glad to see Robins went back to the office today! Shan and Robins was sick the same time with flu. Shan is very quick to recover as one day sick but Robins was sick with high fever for one week. Here I am with a new liver, with immune suppressor, was in a good condition.
Anyway to be changed the subject, Last month when I was in Gainesville, Fl., I went to see Mama Mia. I love it! It is very entertaining. I went to see the movie with my mother in law and Jone Mandenhall. I love music so this is the good movie for me. Well... I love music but not opera. OK you can call me that me, Helen Layshan is no high class because of not liking opera (I wold say a particular musical which is so loud), let me be in the low class (By the way for me class is not what you like or how much money in the bank, class for me is how you present). I have friends, they love the opera saying sad, romantic, dramatic or happy? (some will talk, how many time in New York Opera house). Nothing wrong with that but I just do not understand that's all. I do speak Spanish, I understand well Franch even though I still do not like Opera. Well..to be fair I enjoy Carmen (only one).
I remember that long time ago when Richard Cladaman performed the show in Hong Kong, ticket was not cheap either say...good prize. I got invited by my good friend Dr. Moss, and his secretary. I felt at sleep in 15 minutes, I was so embarrassing because Moss told me that "So good to invite you Helen"... I like Michael Jackson, Nora Jones, Amy Winehouse, Bryan Adams, Bee Gee....ta ta ta ta ta.....Now Mama Mia makes ABBA comes alive! You know who I do not like much? Randy Newman is the answer! He make me laugh but I feel he is a bit rude.
Robins do not like music so much except...Tom Patty! Anyway I will make him to go see Mama Mia if he is not going, I will break his legs to go with me. Last time Shan toke us to see Indiana Jone, Robins slept till the end! Mama Mia is open in Thailand yesterday!
I had read news today which is make me laugh. Do you know Ballywood don't you? OK Hollywood is in USA but Ballywood is in India. Got it? Do you know Harry Potter? Of course you do and we all know that wired movie. Now the Ballywood is making a movie call "Hari Puttar"!! I will only say.....Mama Mia! Hope they will success.
Anyway to be changed the subject, Last month when I was in Gainesville, Fl., I went to see Mama Mia. I love it! It is very entertaining. I went to see the movie with my mother in law and Jone Mandenhall. I love music so this is the good movie for me. Well... I love music but not opera. OK you can call me that me, Helen Layshan is no high class because of not liking opera (I wold say a particular musical which is so loud), let me be in the low class (By the way for me class is not what you like or how much money in the bank, class for me is how you present). I have friends, they love the opera saying sad, romantic, dramatic or happy? (some will talk, how many time in New York Opera house). Nothing wrong with that but I just do not understand that's all. I do speak Spanish, I understand well Franch even though I still do not like Opera. Well..to be fair I enjoy Carmen (only one).
I remember that long time ago when Richard Cladaman performed the show in Hong Kong, ticket was not cheap either say...good prize. I got invited by my good friend Dr. Moss, and his secretary. I felt at sleep in 15 minutes, I was so embarrassing because Moss told me that "So good to invite you Helen"... I like Michael Jackson, Nora Jones, Amy Winehouse, Bryan Adams, Bee Gee....ta ta ta ta ta.....Now Mama Mia makes ABBA comes alive! You know who I do not like much? Randy Newman is the answer! He make me laugh but I feel he is a bit rude.
Robins do not like music so much except...Tom Patty! Anyway I will make him to go see Mama Mia if he is not going, I will break his legs to go with me. Last time Shan toke us to see Indiana Jone, Robins slept till the end! Mama Mia is open in Thailand yesterday!
I had read news today which is make me laugh. Do you know Ballywood don't you? OK Hollywood is in USA but Ballywood is in India. Got it? Do you know Harry Potter? Of course you do and we all know that wired movie. Now the Ballywood is making a movie call "Hari Puttar"!! I will only say.....Mama Mia! Hope they will success.
Tuesday, August 26, 2008
Shan's birthday
Shan
Shan and his father
Shan at Ceder Key, Fl.
At our Lawyer friend's house!
Shan, my son is going to be 13 on 31st of August. His full name is Robins Layshan McIntosh. I got this child after 3 year of my married. I thought Iwon't be a mother as I had to wait for 3 years... but...by the blessing I got one!
He was born in Guatemala by choice. My mother in law adivsed me that I can make this child in Gainesville but I made him in Guatemala, at El Pila, Spanish Private Hospital. He was with 10 lbs weight and a long long boy. His first language is Spanish and then come the English! He was the biggest baby on that night and his nick name is " El Gordedo"!! The nurse gave this name to him.
Shan this is for you: Thank you so much for being a good child. In deed you are a very good kid as never cursing at us, not slaming the door and a polite boy. Hope you can maintain this attitude and growning up as a "Fear of God" Child. If you do not understand what is "Fear of God Child",...one day, ma ma will explaing to you!
"Lord, thank you for another year with Shan. It is so good life Lord. May you be the one who lead my Shan's life forever. Amen"
Shan and his father
Shan at Ceder Key, Fl.
At our Lawyer friend's house!
Shan, my son is going to be 13 on 31st of August. His full name is Robins Layshan McIntosh. I got this child after 3 year of my married. I thought Iwon't be a mother as I had to wait for 3 years... but...by the blessing I got one!
He was born in Guatemala by choice. My mother in law adivsed me that I can make this child in Gainesville but I made him in Guatemala, at El Pila, Spanish Private Hospital. He was with 10 lbs weight and a long long boy. His first language is Spanish and then come the English! He was the biggest baby on that night and his nick name is " El Gordedo"!! The nurse gave this name to him.
Shan this is for you: Thank you so much for being a good child. In deed you are a very good kid as never cursing at us, not slaming the door and a polite boy. Hope you can maintain this attitude and growning up as a "Fear of God" Child. If you do not understand what is "Fear of God Child",...one day, ma ma will explaing to you!
"Lord, thank you for another year with Shan. It is so good life Lord. May you be the one who lead my Shan's life forever. Amen"
Monday, August 25, 2008
Why me?
Lots of people asked to God when they have Cancer, "Why Me?". It is OK to ask what ever you want to ask. I can't judge because I do not see your question is base on what....anger, mad, sincerely, request, or looking for the understanding?I always believe in that God knows the best!
How are you going to answer if God ask back to you, "Why not?"
If you like to see and trust in Miracle, the following are another miracle!
Brain Tumor Survivor: david m. baileylast Updated: 4/22/2007
If you have the real player installed, click here to listen to david's song, 'Live Forever'!
Today is April 22 2007. I was diagnosed with a GBM in July 1996—They told me I had 6 months. They were wrong. Despite what you might hear, , hope is a very real thing, and with every passing day, there are more and more reasons to hope. ; I was given 6 months and that was over ten years ago. Following is a summary of my treatments with some additional thoughts and resources that I hope you find helpful.
The Diagnosis and First Steps
I was diagnosed with a GBM IV in July of 1996. After a month of excruciating headaches, I fell over one morning; family called an ambulance, and then was life-flighted to a larger hospital where I had emergency surgery July 3 to remove a baseball-sized tumor.
The surgery was successful. After a crash-course on malignant brain tumors, we realized we had no time to wait. We saw a regular medical oncologist, as referred by the surgeon. He gave us little hope and only offered a clinical trial using chemotherapies that had not really shown much success in treating GBM - plus, and it was a 'randomized trial' which meant that a computer would randomly pick who would actually get the drug - an important method for research, but not one I was interested in for my care. He then did the very best thing he could have, which was to tell me I needed to see a NEURO-oncolologist - some one who specialized in heads..
I searched on the Internet and found an amazing virtualtrials website that listed all clinical trials for brain tumors in the whole country. I printed out a list and began cold-calling contact persons for various clinical (experimental) trials across the nation. I also made an important decision - I figured that if there really were no cure, it was more important to find the right PEOPLE than the right DRUG - first of all because I'm not a neurologist who can understand them all and more importantly because drugs will come and go, work and fail, but the right people will stick by your side through it all.
I was lucky - My third call was to the brain tumor center at Duke University. Dr. Henry Friedman returned the call - at 10:30PM! . He said " david, you're too young to die (30) come down, page me, and I'll see you immediately". We collected my scans, microscopic slides, and embedded paraffin slabs from the biopsy and drove to Duke the next day. Though Henry is in research and conducts so many trials, if a patient is not responding positively to an experimental treatment, he pulls them off of that trial and tries something else. There was a lot of comfort in knowing he had a whole arsenal and was willing to use it- The patient's treatment is much more important to him than the research results. With trust came a huge sense of relief - Because of that trust, we didn't feel a need to spend hours seeking other opinions or therapies from around the country - because of that trust, we found an ability to face the facts, leave the medical calls to the team and move on tackle the intellectual, emotional, and spiritual needs. We never looked back.
The Treatments
My scans showed a lentil-sized piece of tumor that remained post-surgery. -- By Thursday of that week we were home with the first round of pills for a new promising chemotherapy trial called Temozolomide (Trade name, Temodar) I took the pills every night for five nights, then had three weeks off I had some initial difficulty with nausea and fatigue, but nothing that medications and naps couldn't handle. Though it's not a 100% effective-magic drug, it worked for me - After just one month, the tumor was gone.
I took three more rounds of the Temodar to complete the trial and continue fighting any invisible cancer cells. . I was about to start the important 3-D planning for conformed field external beam radiation when they discovered a second, old, low-grade tumor. At Thanksgiving of 1996 I had a second craniotomy to remove this tumor. At that time, I also had a port installed into the tumor cavity. . Just before Christmas I began six weeks of radiation. In March of 1997 my scans were still clear - but Henry and I have both been believers in not standing by and waiting for a re-growth - so when we were winning, we treated. . Henry then suggested that I have the monoclonal antibody procedure done, for which the port had been installed. Simply put, Monoclonal antibodies are radioactive mouse antibodies which are injected through the port straight to the tumor cavity. The isotopes find the cancer cells and destroy them with their radioactivity. I was in isolation for seven days while radioactive - It sounds spooky, but it was painless. [Since I took this treatment, they have managed to decrease the length of stay by using antibodies with a shorter half-life] Then in August '97, My MRI scan began to show some enhancement. I started another chemo called CCNU, which was taken by pill in one dose per six weeks. The CCNU did cause my platelet count to drop considerably, but not enough to require a transfusion. I took vitamin B -12 to boost bone marrow production and that seemed to help. I found anti-nausea medication a MUST on dosage day. In October, the enhancement was more pronounced -. Doctors tried a PET (or SPECT) scan to try to determine whether it was live tumor or necrosis (dead tissue caused by radiation). However, the PET scan was inconclusive- and had been proven incorrect in numerous cases over the past several months.) . I did one more cycle of the CCNU but in December the "enhancement seemed to have actually thickened. So in January 98, a second biopsy proved it to be necrosis. .
Following the good-news biopsy, I still went back to the course of treatments, hammering away at whatever might still be there. I did two cycles of VP-16, an oral drug taken daily for 21 days, off 7 days. My blood counts were fine throughout the VP-16 and with anti-nausea medication, managed some discomfort. Next, I took Tamoxifen for many months - a hormone therapy generally used in treating breast cancer, but has shown promise in the treatment of brain tumors - no effect on blood counts and no nausea. That was in 1997 and was the last active treatment I took.
The Annoying & The Important Stuff
The scans continued to be clean, but I started having some trouble with seizures in 1998 - my daily 300 mg of Dilantin was no longer doing the job - we tried upping the dose, then we tried adding Neurotin, but neither worked and left me terrifically groggy. - Finally, we tried adding Lamictal, a relatively newer anti-seizure drug on the market. It' did the job for a long time and I was gradually able to drop the lamictal and am now back to just the Dilantin. I also take a muli-vitamn, extra Citamiin C, as well as Essiac Tea. Has it helped fight the tumor? I'm not sure, but I haven't had a cold in years, and I used to get them all the time when I was a ‘healthy’ person
. In late 1998, we noticed a loss of peripheral vision on my left side - but in both eyes, so the field cut is pretty dramatic. . I tried 'prism' glasses to help correct, but didn't find them effective, so I just learned to be more careful looking around (!) In January 2000 I did a 3-hour euro-psych test to get a baseline reading on various cognitive tasks. - Final report said I still thank fine, but was perhaps a bit slow when changing topics - but some will say I've always been that way....
So I've lost all left peripheral vision , have some balance issues, tire quickly, and still have the occasional seizure , but these are really, in the end, just annoying things- Life goes on and I'm still here to be a part of it. I'm on a 1 year checkup cycle and on July 4, 2007 will celebrated 11 years of surviving the beast.
Treating a brain tumor is a complex thing- unlike a broken bone, you can't just treat the physical ailment - the tumor attacks who you are, and thus your intellect, feelings, and spirit area all threatened and must be cared for - and it's too much for one person to do it all, especially when you're fighting hard physically.
I found three things that put my life back into balance.
Faith; For me, faith in a God who loves me and would stick it out with me no matter what, a faith I had started to lose over the years - the foundation of the house of my life. .
Family & Friends -; the walls of my life behind which I could find shelter from the winds, and could lean upon when weary.
Future - the new windows and doors of my life that showed me the possible, and gave me the chance to start believing in dreaming.
ALSO, I stopped asking ‘Why me” and changed the question to ‘What now?” -- much more productive and healthy question. I think we all have a dream for a reason and I think we all have the time we need to make it happen. In some ways, we are the lucky ones because we are given a chance to really understand how precious life is and how fulfilling the moments can be. I began a new life as a performing songwriter and have since released 15 CDs and performed in 44 states, trying the share the message of hope I have experienced. I think looking out to help other people is a great way to help your own heart.
Reminders & Resources
The Doctors are incredible people, but only human - Remember that whatever they tell you is ultimately just their educated guess. They are proven wrong every day. If 'there's one chance in 500, someone's gotta be the one" Never stop thinking that you're the one.
If there is a brain tumor support group in your area, join it. One of the greatest comforts and strengths you will find is in the sharing with others - particularly as you discover that you are in a position to help others - and as you do so, will help yourself. It's a magic that never fails.
Duke Info The Duke Brain Tumor Center, including the family support team, can be contacted during business hours at 919) 684-5301. Their policy is to return your call within 24 hours.
If you need to speak to Henry right away, you can page him at 919-970-5656. Feel free to use use my name as a reference- He will probably call late at night and has been known to speak quickly. - Be sure to have your questions ready so you don't forget. He always does better than his best.
Online support groups These are astounding resources where patients, caregivers, and medical professionals from around the world ask questions, make comments, and provide answers to just about any thing you can think of. There are many groups for just about any topic relating to brain tumors that you can imagine. The 2 biggest general brain tumor groups are the BrainTMR List and the Brain-Temozolomide group. I've made countless friends on the lists who are a big part of my life today. To learn more about them and how to join, visit http://www.braintrust.org/ and http://virtualtrials.com/lists.cfm
I am on tour around the country pretty much all the time and would welcome the chance to meet you if I'm in your area.
Websites
There are A LOT great websites with brain tumor info - I suggest starting with the following -
Al Musella's List of Clinical Trials and Treatments -http://www.virtualtrials.com
The National Brain tumor Foundation -
The American Brain Tumor Association-
The Brain Tumor Society-
I also have a growing collection of resource links on my site where you can also learn more about my background, my music, and my tour schedule. Wishing you Great Peace - david live hopedavidinfo: www.davidmbailey.commusic: www.cdbaby.com/dbailey
How are you going to answer if God ask back to you, "Why not?"
If you like to see and trust in Miracle, the following are another miracle!
Brain Tumor Survivor: david m. baileylast Updated: 4/22/2007
If you have the real player installed, click here to listen to david's song, 'Live Forever'!
Today is April 22 2007. I was diagnosed with a GBM in July 1996—They told me I had 6 months. They were wrong. Despite what you might hear, , hope is a very real thing, and with every passing day, there are more and more reasons to hope. ; I was given 6 months and that was over ten years ago. Following is a summary of my treatments with some additional thoughts and resources that I hope you find helpful.
The Diagnosis and First Steps
I was diagnosed with a GBM IV in July of 1996. After a month of excruciating headaches, I fell over one morning; family called an ambulance, and then was life-flighted to a larger hospital where I had emergency surgery July 3 to remove a baseball-sized tumor.
The surgery was successful. After a crash-course on malignant brain tumors, we realized we had no time to wait. We saw a regular medical oncologist, as referred by the surgeon. He gave us little hope and only offered a clinical trial using chemotherapies that had not really shown much success in treating GBM - plus, and it was a 'randomized trial' which meant that a computer would randomly pick who would actually get the drug - an important method for research, but not one I was interested in for my care. He then did the very best thing he could have, which was to tell me I needed to see a NEURO-oncolologist - some one who specialized in heads..
I searched on the Internet and found an amazing virtualtrials website that listed all clinical trials for brain tumors in the whole country. I printed out a list and began cold-calling contact persons for various clinical (experimental) trials across the nation. I also made an important decision - I figured that if there really were no cure, it was more important to find the right PEOPLE than the right DRUG - first of all because I'm not a neurologist who can understand them all and more importantly because drugs will come and go, work and fail, but the right people will stick by your side through it all.
I was lucky - My third call was to the brain tumor center at Duke University. Dr. Henry Friedman returned the call - at 10:30PM! . He said " david, you're too young to die (30) come down, page me, and I'll see you immediately". We collected my scans, microscopic slides, and embedded paraffin slabs from the biopsy and drove to Duke the next day. Though Henry is in research and conducts so many trials, if a patient is not responding positively to an experimental treatment, he pulls them off of that trial and tries something else. There was a lot of comfort in knowing he had a whole arsenal and was willing to use it- The patient's treatment is much more important to him than the research results. With trust came a huge sense of relief - Because of that trust, we didn't feel a need to spend hours seeking other opinions or therapies from around the country - because of that trust, we found an ability to face the facts, leave the medical calls to the team and move on tackle the intellectual, emotional, and spiritual needs. We never looked back.
The Treatments
My scans showed a lentil-sized piece of tumor that remained post-surgery. -- By Thursday of that week we were home with the first round of pills for a new promising chemotherapy trial called Temozolomide (Trade name, Temodar) I took the pills every night for five nights, then had three weeks off I had some initial difficulty with nausea and fatigue, but nothing that medications and naps couldn't handle. Though it's not a 100% effective-magic drug, it worked for me - After just one month, the tumor was gone.
I took three more rounds of the Temodar to complete the trial and continue fighting any invisible cancer cells. . I was about to start the important 3-D planning for conformed field external beam radiation when they discovered a second, old, low-grade tumor. At Thanksgiving of 1996 I had a second craniotomy to remove this tumor. At that time, I also had a port installed into the tumor cavity. . Just before Christmas I began six weeks of radiation. In March of 1997 my scans were still clear - but Henry and I have both been believers in not standing by and waiting for a re-growth - so when we were winning, we treated. . Henry then suggested that I have the monoclonal antibody procedure done, for which the port had been installed. Simply put, Monoclonal antibodies are radioactive mouse antibodies which are injected through the port straight to the tumor cavity. The isotopes find the cancer cells and destroy them with their radioactivity. I was in isolation for seven days while radioactive - It sounds spooky, but it was painless. [Since I took this treatment, they have managed to decrease the length of stay by using antibodies with a shorter half-life] Then in August '97, My MRI scan began to show some enhancement. I started another chemo called CCNU, which was taken by pill in one dose per six weeks. The CCNU did cause my platelet count to drop considerably, but not enough to require a transfusion. I took vitamin B -12 to boost bone marrow production and that seemed to help. I found anti-nausea medication a MUST on dosage day. In October, the enhancement was more pronounced -. Doctors tried a PET (or SPECT) scan to try to determine whether it was live tumor or necrosis (dead tissue caused by radiation). However, the PET scan was inconclusive- and had been proven incorrect in numerous cases over the past several months.) . I did one more cycle of the CCNU but in December the "enhancement seemed to have actually thickened. So in January 98, a second biopsy proved it to be necrosis. .
Following the good-news biopsy, I still went back to the course of treatments, hammering away at whatever might still be there. I did two cycles of VP-16, an oral drug taken daily for 21 days, off 7 days. My blood counts were fine throughout the VP-16 and with anti-nausea medication, managed some discomfort. Next, I took Tamoxifen for many months - a hormone therapy generally used in treating breast cancer, but has shown promise in the treatment of brain tumors - no effect on blood counts and no nausea. That was in 1997 and was the last active treatment I took.
The Annoying & The Important Stuff
The scans continued to be clean, but I started having some trouble with seizures in 1998 - my daily 300 mg of Dilantin was no longer doing the job - we tried upping the dose, then we tried adding Neurotin, but neither worked and left me terrifically groggy. - Finally, we tried adding Lamictal, a relatively newer anti-seizure drug on the market. It' did the job for a long time and I was gradually able to drop the lamictal and am now back to just the Dilantin. I also take a muli-vitamn, extra Citamiin C, as well as Essiac Tea. Has it helped fight the tumor? I'm not sure, but I haven't had a cold in years, and I used to get them all the time when I was a ‘healthy’ person
. In late 1998, we noticed a loss of peripheral vision on my left side - but in both eyes, so the field cut is pretty dramatic. . I tried 'prism' glasses to help correct, but didn't find them effective, so I just learned to be more careful looking around (!) In January 2000 I did a 3-hour euro-psych test to get a baseline reading on various cognitive tasks. - Final report said I still thank fine, but was perhaps a bit slow when changing topics - but some will say I've always been that way....
So I've lost all left peripheral vision , have some balance issues, tire quickly, and still have the occasional seizure , but these are really, in the end, just annoying things- Life goes on and I'm still here to be a part of it. I'm on a 1 year checkup cycle and on July 4, 2007 will celebrated 11 years of surviving the beast.
Treating a brain tumor is a complex thing- unlike a broken bone, you can't just treat the physical ailment - the tumor attacks who you are, and thus your intellect, feelings, and spirit area all threatened and must be cared for - and it's too much for one person to do it all, especially when you're fighting hard physically.
I found three things that put my life back into balance.
Faith; For me, faith in a God who loves me and would stick it out with me no matter what, a faith I had started to lose over the years - the foundation of the house of my life. .
Family & Friends -; the walls of my life behind which I could find shelter from the winds, and could lean upon when weary.
Future - the new windows and doors of my life that showed me the possible, and gave me the chance to start believing in dreaming.
ALSO, I stopped asking ‘Why me” and changed the question to ‘What now?” -- much more productive and healthy question. I think we all have a dream for a reason and I think we all have the time we need to make it happen. In some ways, we are the lucky ones because we are given a chance to really understand how precious life is and how fulfilling the moments can be. I began a new life as a performing songwriter and have since released 15 CDs and performed in 44 states, trying the share the message of hope I have experienced. I think looking out to help other people is a great way to help your own heart.
Reminders & Resources
The Doctors are incredible people, but only human - Remember that whatever they tell you is ultimately just their educated guess. They are proven wrong every day. If 'there's one chance in 500, someone's gotta be the one" Never stop thinking that you're the one.
If there is a brain tumor support group in your area, join it. One of the greatest comforts and strengths you will find is in the sharing with others - particularly as you discover that you are in a position to help others - and as you do so, will help yourself. It's a magic that never fails.
Duke Info The Duke Brain Tumor Center, including the family support team, can be contacted during business hours at 919) 684-5301. Their policy is to return your call within 24 hours.
If you need to speak to Henry right away, you can page him at 919-970-5656. Feel free to use use my name as a reference- He will probably call late at night and has been known to speak quickly. - Be sure to have your questions ready so you don't forget. He always does better than his best.
Online support groups These are astounding resources where patients, caregivers, and medical professionals from around the world ask questions, make comments, and provide answers to just about any thing you can think of. There are many groups for just about any topic relating to brain tumors that you can imagine. The 2 biggest general brain tumor groups are the BrainTMR List and the Brain-Temozolomide group. I've made countless friends on the lists who are a big part of my life today. To learn more about them and how to join, visit http://www.braintrust.org/ and http://virtualtrials.com/lists.cfm
I am on tour around the country pretty much all the time and would welcome the chance to meet you if I'm in your area.
Websites
There are A LOT great websites with brain tumor info - I suggest starting with the following -
Al Musella's List of Clinical Trials and Treatments -http://www.virtualtrials.com
The National Brain tumor Foundation -
The American Brain Tumor Association-
The Brain Tumor Society-
I also have a growing collection of resource links on my site where you can also learn more about my background, my music, and my tour schedule. Wishing you Great Peace - david live hopedavidinfo: www.davidmbailey.commusic: www.cdbaby.com/dbailey
Sunday, August 24, 2008
Airport and airline
I have been in and out, to/from United States since 20 years ago. Before 9/11, every time I touch down US soil I feel so safe and so happy. Airport securities people were with happy face, made me feel so welcome. When I was living in Central America, mostly my first airport was Miami (many many times). Now I live in Thailand ..I fly to mostly LA, Chicago, New York, San Francisco and once to Seattle and then to Orlando. After 9/11, you all know that flying is not easy take more time, more check up etc.....
I do not mind that airports are more careful about security. Actually I like it I do not want to die because of the bad guys. I thanks for security guys's hard work. Now we have to take out the shoes ( I don't like it but understand), which is I never think that will happen! I respect what the airport security's procedure are if even the rule is to pass NAKED under that machine, metal detector, I will... (if you all do so, I will do too), but this time I have a unhappy experience at LA airport.
You know that TSA or TCA (what ever correct one is), guys who check our hand carriage? I do not like some of these guys in LA. Let me tell you what happened!........ I use all my make up or my face stuff only fragrance free. I use this liquid Neutrogena facial cleansing, 8fl oz (236ml), by the way actually half already used up for this trip. I always bought one or two bottles back to Bangkok. Never problem before till this trip (which is not even full bottle), as I flied from Washington DC to LA then to Bangkok, The Dallas (Washington DC) airport security guys they did not bother by my face bottle at all. But when I got check in LA airport..one of the security dude told me "You can take this bottle"..I said "Why?" . He said, "it is over limit" (he told me can't take over something ml, I can't remember).. I got bla bla bla to him. I think he can't take it anymore of my big mouth so he said "You really want this right, OK go out again and throw out some (as he pointed me at my bottle) till here".. I went out, came back and I got called by an ugly lady, (may be 55 or ?? she was ugly inside and out), and she said "You can't take this bottle"..I went so up set and told her "You know that guy over there told me to throw out some and to come back!" then..... She turned her head to, may be her supervisor and told him "We can't tell such thing don't we?" and go bla bla bla. I do not like the words came out from her mouth at all. So I got fed up and told her "fine!" and I walked through!
Then I saw a young TCA (???) security guy who watched the whole thing came over to me and said..."What happened?"..I told him all the story again. I was bad, I remembered that I used the language "Ass @#$%^" preferring the supervisor who talked rude and acted rude saying "you can't take it" and throw my bottle into the basket with very rudely!... ( The funny thing is when I apologize for my Ass#$%^to that young guy, he told me "No no no it's good, say louder"!! I laughed so loud for that). I told the young security guy that "I have to use a certain thing for my face as my dermatology said "blue Lizard" for my sun cream as this face wash has no Fragrance which I need it"... he took me to the higher position guy and .... he gave me permittion to take back my bottle. It was happy ending. Such thing never happen before so I was a bit angry too. I got back because of saying "my medical purpose!".. which is true!!
I understand what these security guys are doing what ever they have to do but I do not understand that one airport is OK and then the other airport is not OK.... I wonder what they do with that basket full of lotion or what ever in it???. I hope they donate to the Salvation Army, I mean it!
Now see how the airlines confuse me......... Last year when I went to Israel to see my Christ's birth place, I took the Delta airline from Orlando to New York. At the McCoy airport the airline said my luggage was over weight and I had to pay! (I think 100$)...but when I came back to Bangkok (by air El Al), the Israel airline did not charged me a nickle! (I had bought some more clothes from the Italian Boutique mean more weight!!). So did happened the same thing in Dallas air port too. Robins's luggage was 4 lbs over weight and said, need to pay 100 $, but I said to Robins to take out 2 bottles of Vitamin and put it into Shan's luggage but the lady at the counter was nice enough to say... It's OK no need to do and let us passed!!
Flying is not easy anymore, more rules and more restricted. If I can go to everywhere (including to USA) by Donkeys for 2 days, I would do it happily on the donkey!!
I do not mind that airports are more careful about security. Actually I like it I do not want to die because of the bad guys. I thanks for security guys's hard work. Now we have to take out the shoes ( I don't like it but understand), which is I never think that will happen! I respect what the airport security's procedure are if even the rule is to pass NAKED under that machine, metal detector, I will... (if you all do so, I will do too), but this time I have a unhappy experience at LA airport.
You know that TSA or TCA (what ever correct one is), guys who check our hand carriage? I do not like some of these guys in LA. Let me tell you what happened!........ I use all my make up or my face stuff only fragrance free. I use this liquid Neutrogena facial cleansing, 8fl oz (236ml), by the way actually half already used up for this trip. I always bought one or two bottles back to Bangkok. Never problem before till this trip (which is not even full bottle), as I flied from Washington DC to LA then to Bangkok, The Dallas (Washington DC) airport security guys they did not bother by my face bottle at all. But when I got check in LA airport..one of the security dude told me "You can take this bottle"..I said "Why?" . He said, "it is over limit" (he told me can't take over something ml, I can't remember).. I got bla bla bla to him. I think he can't take it anymore of my big mouth so he said "You really want this right, OK go out again and throw out some (as he pointed me at my bottle) till here".. I went out, came back and I got called by an ugly lady, (may be 55 or ?? she was ugly inside and out), and she said "You can't take this bottle"..I went so up set and told her "You know that guy over there told me to throw out some and to come back!" then..... She turned her head to, may be her supervisor and told him "We can't tell such thing don't we?" and go bla bla bla. I do not like the words came out from her mouth at all. So I got fed up and told her "fine!" and I walked through!
Then I saw a young TCA (???) security guy who watched the whole thing came over to me and said..."What happened?"..I told him all the story again. I was bad, I remembered that I used the language "Ass @#$%^" preferring the supervisor who talked rude and acted rude saying "you can't take it" and throw my bottle into the basket with very rudely!... ( The funny thing is when I apologize for my Ass#$%^to that young guy, he told me "No no no it's good, say louder"!! I laughed so loud for that). I told the young security guy that "I have to use a certain thing for my face as my dermatology said "blue Lizard" for my sun cream as this face wash has no Fragrance which I need it"... he took me to the higher position guy and .... he gave me permittion to take back my bottle. It was happy ending. Such thing never happen before so I was a bit angry too. I got back because of saying "my medical purpose!".. which is true!!
I understand what these security guys are doing what ever they have to do but I do not understand that one airport is OK and then the other airport is not OK.... I wonder what they do with that basket full of lotion or what ever in it???. I hope they donate to the Salvation Army, I mean it!
Now see how the airlines confuse me......... Last year when I went to Israel to see my Christ's birth place, I took the Delta airline from Orlando to New York. At the McCoy airport the airline said my luggage was over weight and I had to pay! (I think 100$)...but when I came back to Bangkok (by air El Al), the Israel airline did not charged me a nickle! (I had bought some more clothes from the Italian Boutique mean more weight!!). So did happened the same thing in Dallas air port too. Robins's luggage was 4 lbs over weight and said, need to pay 100 $, but I said to Robins to take out 2 bottles of Vitamin and put it into Shan's luggage but the lady at the counter was nice enough to say... It's OK no need to do and let us passed!!
Flying is not easy anymore, more rules and more restricted. If I can go to everywhere (including to USA) by Donkeys for 2 days, I would do it happily on the donkey!!
Friday, August 22, 2008
Williamburg and Gettyburg
Shan(my only child), at Gettyburg happy to find his McIntosh relative that fought in the battle!
Patrick Henery house (hope correct!) who said give me liberty or give me death! For me I want liverty but not dead. I will fight you know!
Me at the Gettyburg Civil war cemetary. It is sad to see many die, most of them are unknow and so young.
Patrick Henery house (hope correct!) who said give me liberty or give me death! For me I want liverty but not dead. I will fight you know!
Me at the Gettyburg Civil war cemetary. It is sad to see many die, most of them are unknow and so young.
Thursday, August 21, 2008
Dr. Lewin's book - Merde
See the commendation of Dr. Lewin's Merde book! I read twice. Hope you all enjoy it. Merde is a French, Merda is a Spanish, Chee is a Burmese, Kee is a Thai, @#$% is a American?
Ralph Lewin, Merde: Excursions in Scientific, Cultural and Socio-Historical Coprology (Random House, 1999)
The title of this book, a French curse word widely known and used outside of its country of origin, also refers to a subject that affects every living creature on this planet. The author, a marine biologist at the Scripps Institute of Oceanography at the University of California, San Diego, foregoes numerous opportunities for puns and only once in a while flashes a dry wit. Though scatology may amuse, Ralph Lewin is not interested in that; rather, his book is a serious treatment of coprology, the science of solid waste products -- of human beings, of course, but also that of numerous creatures of the orders of mammals, reptiles, invertebrates, birds and even microscopic creatures. History, biology, culture and animal behaviour are thus the real subjects of Merde.
Lewin, writing in the most ingratiating, sophisticated and thoroughly scientific way, discusses fecal matters in relation to myths and legends; physical features; environmental pollution; health and disease; use for construction, as fertilizers, as fuel -- even nutritional values! The book is also replete with personal adventures and observations, as well as anecdotes and examples. As far as this last, just to convey an idea of the contents: "The consumer's union staff members assigned the task of testing toilets, handily concocted a synthetic material out of sawdust, flour, shortening, and just enough hollow plastic beads to confer a slight degree of buoyancy, but the usual formula involves a crucial ratio of water to fiber -- no laughing matter to, say, an army."
For the first time, the highly scattered literature on this subject has been perused, compiled and given a personal touch, as it were (with extensive bibliography provided). The resulting book is a highly unusual, fascinating and bizarrely entertaining reading experience packed with weird data and information the reader may always have wondered about -- but didn't quite know how to broach the subject. This treasure trove of odd facts is an ideal ice-breaker, just begging to be shared, and while it may not be suitable for every personal library, it is the perfect item to keep in another room in the house where it is guaranteed to arouse interest -- maybe even astound!
Ralph Lewin, Merde: Excursions in Scientific, Cultural and Socio-Historical Coprology (Random House, 1999)
The title of this book, a French curse word widely known and used outside of its country of origin, also refers to a subject that affects every living creature on this planet. The author, a marine biologist at the Scripps Institute of Oceanography at the University of California, San Diego, foregoes numerous opportunities for puns and only once in a while flashes a dry wit. Though scatology may amuse, Ralph Lewin is not interested in that; rather, his book is a serious treatment of coprology, the science of solid waste products -- of human beings, of course, but also that of numerous creatures of the orders of mammals, reptiles, invertebrates, birds and even microscopic creatures. History, biology, culture and animal behaviour are thus the real subjects of Merde.
Lewin, writing in the most ingratiating, sophisticated and thoroughly scientific way, discusses fecal matters in relation to myths and legends; physical features; environmental pollution; health and disease; use for construction, as fertilizers, as fuel -- even nutritional values! The book is also replete with personal adventures and observations, as well as anecdotes and examples. As far as this last, just to convey an idea of the contents: "The consumer's union staff members assigned the task of testing toilets, handily concocted a synthetic material out of sawdust, flour, shortening, and just enough hollow plastic beads to confer a slight degree of buoyancy, but the usual formula involves a crucial ratio of water to fiber -- no laughing matter to, say, an army."
For the first time, the highly scattered literature on this subject has been perused, compiled and given a personal touch, as it were (with extensive bibliography provided). The resulting book is a highly unusual, fascinating and bizarrely entertaining reading experience packed with weird data and information the reader may always have wondered about -- but didn't quite know how to broach the subject. This treasure trove of odd facts is an ideal ice-breaker, just begging to be shared, and while it may not be suitable for every personal library, it is the perfect item to keep in another room in the house where it is guaranteed to arouse interest -- maybe even astound!
Monkey @#$%
Notice: Read or No Read up to you !
Last Sunday, I saw a horrible article in the magazine while me and my family were having breakfast! The article was about one of the African countries (forgot the name of the place), people are Bar-B-Queing the monkey. I saw the picture that the money was even not properly clean, (I mean all the guts are still in attache) and the nails are obviously not cut off as chicken!!
When I saw the article, my memory flash back about a kind of Mountain people living in Shan State are eating Monkey's @#$%! No joking! It is calls, in Burmese "Myonk Chee Khar"!! Please do not judge that they are barbaric. When people get hungry they will eat what ever they can find (Well to be fair...human shouldn't eat @#$%). Of course here I went into my Internet looking about "people eating Monkey @#$%"... I was so amaze to see that there are over 40 pages about Monkey @#$% (please understand how I spend my some days, some of my days are boring, nothing to do beside taking Vitamina for my health)!!
My Internet even told me that there is a kind of coffee call "Monkey @#$% coffee"......then other connecting article said, "in China people are so liking the Dog Meat that the authority set the rule one dog per house hold!". Hey if you want to know about , well... I should say as your general knowledge, one research group said ..... "It take a monkey only 5 second to @#$% but human being take 10 to 30 minutes. " ( I think the researcher are wrong for the people because it depend on how constipating you are!!) ...Hope you agree!
One of our friends, His name is Dr. Ralph Lewin (you can Internet about him too), he found one kind of alge and he is famous (I was told that his fellows who alos found the other alges, most of them are dead). He is also the professor of our good friend Dr. Arlo. One day I do not know what in the world in Dr. Lewin's brain, he wrote a book call "Merde"...mean "@#$%". That book is nothing but only about @#$%! He gave me that book as a present (with his signature, posted from his summer house from England), when he came to Bangkok 5 years ago I believe. I was so enjoy reading his book..lots of information folks. He even did research that how much water is consuming for toilet per day in California State... What a information isn't it??
OK back to Monkey eater, I think people should eat real stuff, like vege! Well most of the animal eat vege so whats the different. The following 10 food are very bad but some people are eating...
1. Fish eye balls.
2. Pig's balls.
3. Civet's @#$% , oh yeah I found out that it sell 120$ to 600$ per @#$%. Japanese and American are the most consuming.
4. Ox Penis.
5. Monkey brain.
6. Ducks tongue.
7. Rat soup.
8. Balut-Duck fetus.
9.Sneak blood!
10. Tiger bone soup.
Question: What in the world am I writing about this @#$%??
Warning: @#$% = poop for me but on Internet it is the other one!
Last Sunday, I saw a horrible article in the magazine while me and my family were having breakfast! The article was about one of the African countries (forgot the name of the place), people are Bar-B-Queing the monkey. I saw the picture that the money was even not properly clean, (I mean all the guts are still in attache) and the nails are obviously not cut off as chicken!!
When I saw the article, my memory flash back about a kind of Mountain people living in Shan State are eating Monkey's @#$%! No joking! It is calls, in Burmese "Myonk Chee Khar"!! Please do not judge that they are barbaric. When people get hungry they will eat what ever they can find (Well to be fair...human shouldn't eat @#$%). Of course here I went into my Internet looking about "people eating Monkey @#$%"... I was so amaze to see that there are over 40 pages about Monkey @#$% (please understand how I spend my some days, some of my days are boring, nothing to do beside taking Vitamina for my health)!!
My Internet even told me that there is a kind of coffee call "Monkey @#$% coffee"......then other connecting article said, "in China people are so liking the Dog Meat that the authority set the rule one dog per house hold!". Hey if you want to know about , well... I should say as your general knowledge, one research group said ..... "It take a monkey only 5 second to @#$% but human being take 10 to 30 minutes. " ( I think the researcher are wrong for the people because it depend on how constipating you are!!) ...Hope you agree!
One of our friends, His name is Dr. Ralph Lewin (you can Internet about him too), he found one kind of alge and he is famous (I was told that his fellows who alos found the other alges, most of them are dead). He is also the professor of our good friend Dr. Arlo. One day I do not know what in the world in Dr. Lewin's brain, he wrote a book call "Merde"...mean "@#$%". That book is nothing but only about @#$%! He gave me that book as a present (with his signature, posted from his summer house from England), when he came to Bangkok 5 years ago I believe. I was so enjoy reading his book..lots of information folks. He even did research that how much water is consuming for toilet per day in California State... What a information isn't it??
OK back to Monkey eater, I think people should eat real stuff, like vege! Well most of the animal eat vege so whats the different. The following 10 food are very bad but some people are eating...
1. Fish eye balls.
2. Pig's balls.
3. Civet's @#$% , oh yeah I found out that it sell 120$ to 600$ per @#$%. Japanese and American are the most consuming.
4. Ox Penis.
5. Monkey brain.
6. Ducks tongue.
7. Rat soup.
8. Balut-Duck fetus.
9.Sneak blood!
10. Tiger bone soup.
Question: What in the world am I writing about this @#$%??
Warning: @#$% = poop for me but on Internet it is the other one!
Tuesday, August 19, 2008
A Letter for Susan!
Note: Susan is not her real name!
Dear Susan,
I am not going to ask you how are you because I know how you are doing. I checked in your blog this morning. I did not see you are writing your blog instead of someone wrote..... "You are in the hospital". I am so sorry to hear that. There are so many cancer patients blogs but you, is the one catch my attention. May be you are more or less my age, you have a younger children like me, we think quite similar and most of it we both know the feeling of fighting the cancer.
I am not going to say hang in there, thing will work out!, as many people said that when I was fighting my own cancer. I want to say something to you, may be this does not suit your thinking but anyway I am going to say..............."When the storm come again, you swim!".. This was from my GI doctor. I like it and thinking.... it is true. If I swim I might go some distance even though I might not make it to the bank! Unless I swim.
You do not know how much your blog is helping to others. Your information are well form and sharing your treatment programme is best knowledge to other. In one blog you said "I am more happier now"...very true! I understand what you mean and what you saying. I do feel the same..... life is more value now than before. We think life more deeper than before for me even beyond this earthly life. I used to think me, me and me now I am thinking..my son, my family, my friends, my grand mother etc...................
I will keep in touch with your blog and meantime you and your family are in my
thought and prayer.
Last year when I went to visit my grand mother in up north Thailand. I got a called from a lady, I forgot her name, she said on the phone "I am so happy to hear that you are doing well. I am praying for you"... (She is a lady who belong to the church that my father goes). I asked her "who are you?" ...and went on. My point is, it is so nice to know that people care about you, love you and praying for you. Believe me you are one of the special!
Susan, I so hope that my prayer will work to comfort you!
Love,
Helen
Dear Susan,
I am not going to ask you how are you because I know how you are doing. I checked in your blog this morning. I did not see you are writing your blog instead of someone wrote..... "You are in the hospital". I am so sorry to hear that. There are so many cancer patients blogs but you, is the one catch my attention. May be you are more or less my age, you have a younger children like me, we think quite similar and most of it we both know the feeling of fighting the cancer.
I am not going to say hang in there, thing will work out!, as many people said that when I was fighting my own cancer. I want to say something to you, may be this does not suit your thinking but anyway I am going to say..............."When the storm come again, you swim!".. This was from my GI doctor. I like it and thinking.... it is true. If I swim I might go some distance even though I might not make it to the bank! Unless I swim.
You do not know how much your blog is helping to others. Your information are well form and sharing your treatment programme is best knowledge to other. In one blog you said "I am more happier now"...very true! I understand what you mean and what you saying. I do feel the same..... life is more value now than before. We think life more deeper than before for me even beyond this earthly life. I used to think me, me and me now I am thinking..my son, my family, my friends, my grand mother etc...................
I will keep in touch with your blog and meantime you and your family are in my
thought and prayer.
Last year when I went to visit my grand mother in up north Thailand. I got a called from a lady, I forgot her name, she said on the phone "I am so happy to hear that you are doing well. I am praying for you"... (She is a lady who belong to the church that my father goes). I asked her "who are you?" ...and went on. My point is, it is so nice to know that people care about you, love you and praying for you. Believe me you are one of the special!
Susan, I so hope that my prayer will work to comfort you!
Love,
Helen
Sunday, August 17, 2008
Faith
As I was also a cancer patient before, if I said I knew what other cancer patients feels and think, hope you believe it. What I said about my feeling when I was fighting my own liver cancer were more or less the same as other cancer patients. There is a blog that time to time I check in because it belong to a cancer patient too. I like her blog! I feel she is honest to what she said in it. She married to a good husband, has two young children and well educated woman with a good job. She has cancer in her liver, lung and brain. She is still under treatment.
Today.....after the church, somehow she came into my mind and I went to read her blog. She is very frank in what she is writing down. In one of her blog she said "I do not want to go to heaven. I want to be with my husband and my kids".. and continue said .."any way what is heaven?". I do not know whats heaven will look likes in picture as I do not die yet but I believe in life after dead.
Lots of cancer patients react different way to their faith. Some lost the faith on the way, some becoming confuse in their faith and some are become much more stronger in faith. When I was told I had cancer, I thought I am going to die and felt very hard to leave my husband and my son as Susan (Not her real name) is feeling now but I have not lost faith in God. I remembered that I prayed and beg him that saying "Lord Jesus I want to win this battle. You can Lord and so help me please".... (I was in two majors surgeries in within 2 years. First was liver resection and the Second was liver transplant. If you know my cancer history, it is a miracle for me that I am still living well). I do believe in that the husband I married to and the son that we have is a gift from my God. You can ask me how about those women married to the bastards? Frankly I do not have answer for that. Not only this question but there are so many questions that I cant answer. I just have faith in Christ that's all I can answer.
Heaven: What I know about Heaven is means "be with God"...and for me
"Being with God" is incomparable with in this earthly life. Yes..better place!!! As a Christian, the last Chapter of the BIBLE, in Revelation, you will see what heaven is. Remember before you read it, It's up to your faith!
Today.....after the church, somehow she came into my mind and I went to read her blog. She is very frank in what she is writing down. In one of her blog she said "I do not want to go to heaven. I want to be with my husband and my kids".. and continue said .."any way what is heaven?". I do not know whats heaven will look likes in picture as I do not die yet but I believe in life after dead.
Lots of cancer patients react different way to their faith. Some lost the faith on the way, some becoming confuse in their faith and some are become much more stronger in faith. When I was told I had cancer, I thought I am going to die and felt very hard to leave my husband and my son as Susan (Not her real name) is feeling now but I have not lost faith in God. I remembered that I prayed and beg him that saying "Lord Jesus I want to win this battle. You can Lord and so help me please".... (I was in two majors surgeries in within 2 years. First was liver resection and the Second was liver transplant. If you know my cancer history, it is a miracle for me that I am still living well). I do believe in that the husband I married to and the son that we have is a gift from my God. You can ask me how about those women married to the bastards? Frankly I do not have answer for that. Not only this question but there are so many questions that I cant answer. I just have faith in Christ that's all I can answer.
Heaven: What I know about Heaven is means "be with God"...and for me
"Being with God" is incomparable with in this earthly life. Yes..better place!!! As a Christian, the last Chapter of the BIBLE, in Revelation, you will see what heaven is. Remember before you read it, It's up to your faith!
If some one is very angry to God because of cancer, I should be the one very angry at God.... but I did not and I never will! I said that because look back in my life of journey, it was not a full of roses life either...on top of that I did had a very very difficulty time. I lost my mother at my young age in Hong Kong, a place there is no family but I was never alone.
Let me share some of my younger life experiences! I did not feel much love from both of my parents...well I know they love me but they kept busy with their own lives mostly. My mother, I should say she checked in us time to time. What I have is my grand mama and my beloved sister, Jue Ju. Here My sister, who I love her so much die when she was only 30 year old of liver cancer....So did my mother die when she was only 42 years old of liver cancer also. Now see..... Can you imagine what I felt when I was told that "You have liver cancer"!! I should be very angry at God don't I? But I do not and I will not.... because my God never promise me that there will be NO pain in life but he promise us saying "Who ever believe in me, shall be safe". I do not mean that those who die of many reasons ahead of me are not believe in God at all. You all know that we all are going to die some time including me. "Shall be safe"..Yes!!! I believe in that! The only thing I do not know is ..will be safe in when ?? Now or after 5 years or 10 years or for eternity? This is in only God's will! No one know but him. That is why I do have Faith in Christ!
What kind of faith will be if I said "Thank you lord I am healthy, happy and have money".... but the minutes the cancer hit me if I said..."You did it to me God, where are you God? why me God? and all why why and why???"
Faith, to have or not to have, it's all up to you.
Susan you are in my thought. If I said you are in my prayer please believe it.
More Amish's Photos
1. 3 Amish's carts parking at the back of the restaurant!
2. Me in the front of Amish' corn field. It is a huge field.
3. This is Ruth's ( she owns the bed and breakfast which I spent the night there. It is a very lovely house) milking factory.
Saturday, August 16, 2008
Amish
1. Amish family outting!
2. A town name Intercourse locating
near Amish people lives
3. Me with Amish cows! they are 80 of them! I ran off because the smell of the cows almost kill me in the spot! The milk are good but the smell are not good at all.
I looked for the meaning of what is Amish in my dictionary. Ofcourse I do know more or less whats the Amish are! In dictionary said "Relating to or designating the adherents of Jacob Ammann a 17th century mennonite, mean a set of Mennonites founded by Jacob Ammann"....Now I am going to see What kind of man the Jacob Ammann is?......I am going in my internet to look for him!!
When I was in Penn. State, I saw lots of Amish there. The Amish vehicle, it is very...how to say???? OK very different fromt the rest of United States. They are very neat as pulling by a horse. They are treating so well by the Penn State as they have their own lanes in most of the roads. Once in a while I saw the sign post said "Keep Penn. State clean"...I was thinking how could it can be maintain the Penn. State clean?? As so many Amish horse carts are on the road and the horses @#$% are all over the streets!! No Joking, the @#$% are all over.
I love the Amish people, they are simple and very much to their families. We went to tour one of the Amish house and learn lots of Amish culture or I should say I learn that what they believe, how they lives etc.....I respect them but there are some points that I couldn't understand why ...ok so many why why why.....Questions!
The following are what I did the thinking when I was in Amish Village.
1. If you opened the beauty shop in around Amish villages, you will be poor in a short time because no one put make up on...But.... if you opened the black shoes shops, you will make the money there for sure.
2. The other thing I am thinking about is...here I am crazy about good cars like europeon cars but they love the horse carts which is so slow, can you imegin to drive from Gainesville to Washington DC??. The only benifit I see with the horse cart is, you no need to buy the gasoline but what the different?? You still need to feed the horses may be 3 or 4 times a days!
3. There an old Amish lady, I saw her at the Amish tour house. I told her as I saw she was using so many pins on her blouse, I mean pointy paper pins without safty . My big mouth goes without thinking and said to her" Oh.. you do not have buttons becareful the pins will poke you"...She was looking at me with her mouth wide opened and speechless! I learn that the older Amish ladies are not allow to use the buttons at all. Do not asked me why because I forgot! You can go into internet as I do if I do not understand something. Internet become a big teacher of my life.
4. I also learn that when a Amish reach a surtain age, the Amish need to decided that he will be Amish for the rest of his life or say ...rebellion! The boy who decided that he did not want to be Amish any more and gone but after some time he changed his mind and come back to his Amish village, that boy will be living like in hell as the Tourist Guide explained to me. The boy will be no friends, need to sit a lone in the church and will face very very small small forgiveness.
5. The Amish do not likes so much colour, they love gray and black! They wear uniform type of clothes like China in 10 years a go!
OK I must stop here because I need to rush to foot massage. If you find some mistake in my writting, as always...OK you can read as you wish! I haven't edit this blog yet!
PS. I love the Amish food. The cow meat are good! and............
@#$% means poop not the other one!
2. A town name Intercourse locating near Amish people lives
3. Me with Amish cows! they are 80 of them! I ran off because the smell of the cows almost kill me in the spot! The milk are good but the smell are not good at all.
I looked for the meaning of what is Amish in my dictionary. Ofcourse I do know more or less whats the Amish are! In dictionary said "Relating to or designating the adherents of Jacob Ammann a 17th century mennonite, mean a set of Mennonites founded by Jacob Ammann"....Now I am going to see What kind of man the Jacob Ammann is?......I am going in my internet to look for him!!
When I was in Penn. State, I saw lots of Amish there. The Amish vehicle, it is very...how to say???? OK very different fromt the rest of United States. They are very neat as pulling by a horse. They are treating so well by the Penn State as they have their own lanes in most of the roads. Once in a while I saw the sign post said "Keep Penn. State clean"...I was thinking how could it can be maintain the Penn. State clean?? As so many Amish horse carts are on the road and the horses @#$% are all over the streets!! No Joking, the @#$% are all over.
I love the Amish people, they are simple and very much to their families. We went to tour one of the Amish house and learn lots of Amish culture or I should say I learn that what they believe, how they lives etc.....I respect them but there are some points that I couldn't understand why ...ok so many why why why.....Questions!
The following are what I did the thinking when I was in Amish Village.
1. If you opened the beauty shop in around Amish villages, you will be poor in a short time because no one put make up on...But.... if you opened the black shoes shops, you will make the money there for sure.
2. The other thing I am thinking about is...here I am crazy about good cars like europeon cars but they love the horse carts which is so slow, can you imegin to drive from Gainesville to Washington DC??. The only benifit I see with the horse cart is, you no need to buy the gasoline but what the different?? You still need to feed the horses may be 3 or 4 times a days!
3. There an old Amish lady, I saw her at the Amish tour house. I told her as I saw she was using so many pins on her blouse, I mean pointy paper pins without safty . My big mouth goes without thinking and said to her" Oh.. you do not have buttons becareful the pins will poke you"...She was looking at me with her mouth wide opened and speechless! I learn that the older Amish ladies are not allow to use the buttons at all. Do not asked me why because I forgot! You can go into internet as I do if I do not understand something. Internet become a big teacher of my life.
4. I also learn that when a Amish reach a surtain age, the Amish need to decided that he will be Amish for the rest of his life or say ...rebellion! The boy who decided that he did not want to be Amish any more and gone but after some time he changed his mind and come back to his Amish village, that boy will be living like in hell as the Tourist Guide explained to me. The boy will be no friends, need to sit a lone in the church and will face very very small small forgiveness.
5. The Amish do not likes so much colour, they love gray and black! They wear uniform type of clothes like China in 10 years a go!
OK I must stop here because I need to rush to foot massage. If you find some mistake in my writting, as always...OK you can read as you wish! I haven't edit this blog yet!
PS. I love the Amish food. The cow meat are good! and............
@#$% means poop not the other one!
Friday, August 15, 2008
Summer 2008 Part II
The chaple is at Mercersburg's high school . It is a beautiful chapble.
This art center at Mercersburg is donated by Dr. Cofrin, one of my in law friends in Gainesville!
Shan is in his Tennis action!
(below)...I was not so happy for seeing shan not moving his feet well! I was busy thinking how can I help him to become a Federal or Nadel...I am dreaming didnot I!!
Real or Not Real
I found the following article from my Google liver news subscription. I am not a doctor but I have a hard time to believe that what this article saying! For me...I do not want the mouse, pig, or dog livers. Do you?? Sometime I wish to stop reading what ever came in my email and sometime I like to see what happening in the medical world!
I blog the article because it is interesting . Let me tell you one thing though.... as I am not a doctor and ...... on top of that I am a liver transplant patient so I am very smart enough to listen only my doctors. My doctors know what they are doing this is what I believe in!
Real or Not Real for this article???
May Your Liver Live On
Posted on August 14, 2008Filed Under Booze News, It Must Be Science!
SHARE THIS.add Entry({ title: "May your liver live on", url: "http://seriouslyguys.com/2008/08/14/may-your-liver-live-on/" });
Share This
Imagine a world where you could drink all you want and do no harm to your body (better known as the dreamland of Sen. Edward Kennedy, D-Mass.). Hangovers may never be fully extinct, but distillers are making their products purer and purer all the time. Long term effects (liver damage, wet brain, red face, accidental marriage, whiskey-related impotence) are still a threat.
That is until now. Scientists have successfully stopped the aging process in a mouse’s liver (they know this by counting the rings). Do you know what this means? If we all get mouse liver transplants, we will never have to worry about sclerosis! Perhaps scientists can learn to stop the aging process in other organs, too. That way our hearts would not suffer from pumping so much alcohol through it and our lungs would not suffer from inhaling all that musting, smoky bar air.
We could drink on forever!
Written by Bryan McBournie
I blog the article because it is interesting . Let me tell you one thing though.... as I am not a doctor and ...... on top of that I am a liver transplant patient so I am very smart enough to listen only my doctors. My doctors know what they are doing this is what I believe in!
Real or Not Real for this article???
May Your Liver Live On
Posted on August 14, 2008Filed Under Booze News, It Must Be Science!
SHARE THIS.add Entry({ title: "May your liver live on", url: "http://seriouslyguys.com/2008/08/14/may-your-liver-live-on/" });
Share This
Imagine a world where you could drink all you want and do no harm to your body (better known as the dreamland of Sen. Edward Kennedy, D-Mass.). Hangovers may never be fully extinct, but distillers are making their products purer and purer all the time. Long term effects (liver damage, wet brain, red face, accidental marriage, whiskey-related impotence) are still a threat.
That is until now. Scientists have successfully stopped the aging process in a mouse’s liver (they know this by counting the rings). Do you know what this means? If we all get mouse liver transplants, we will never have to worry about sclerosis! Perhaps scientists can learn to stop the aging process in other organs, too. That way our hearts would not suffer from pumping so much alcohol through it and our lungs would not suffer from inhaling all that musting, smoky bar air.
We could drink on forever!
Written by Bryan McBournie
Thursday, August 14, 2008
Plane ride with Elanor
If I can, I always tried to get the first roll in the plane since I got my new liver. I am still very careful of sitting among the people in the plane. Asked me how many time I clean my hands!! Luckily this trip, the only people in front of us is the Pilots!
When they boarding the plane in Dallas, Washington DC, I was sitting with my son. Robins was the same roll but the other side. Then an old lady came in with air line helper and seated her next to Robins. I did changed my seat to Robins's knowing he will be happier with his Son.
Elanor is the lady's name. She is 93 years old with well make up, good looking, nice diamond ring (remember I am a jeweller!), black top with light brown pant! She is a beautiful lady even with 93 years old. I like her red lipstick colour!!
Some of my friends who travel alots told me, how good looking guy is next to them and the smell was wonderful, how his eye's colour is all bla bla bla and he he he.......but I never have that kind of chance yet! For me most of the time fat, sometime very fat man next to me. Some time their smell are strange (well I am not sniffing but as you know the seats are stick together), some are snoring so loud too. I wish you see the man who seated next to me last year trip from New York to Tel Avis!! He is huge..way way huge and eat so loud, burbs so loud too..(me and him were in the first class folks!!). I was restless on that trip for can't even sleep because of his lousy snoring.
When I seated next to Elanor, I thought "an old lady????" but turned out to be a very pleasant trip and 5 hours to LAX was gone fast!
We starting conversation, it turned out to be a very nice conversation. She used to live in Florida, owned 2 club houses. After her best friend die she move to VA with her son and a daughter in law who is a doctor. The following are some of hers conversation that I wanted to share...........
" Helen, I do not want to stay with old people house. I like different people...mostly I like young people like you! Conversation is more interesting. Old people, they only talking about their health, and complaining most of the time"
"Helen I did lots of Cross Wards and knitting, this is the way I exercises my brain"
"I got a new doctor and I like her alots. The first one, she ignored me and I do not like her at all"
"Helen you do not eat? why ?? here take my chicken and eat it..(with loving ordered and she scoop her chicken grill salad into my plate! I goes oh oh oh )"
"You know that Prince Charles don't you! He came to play polo in the club once, oh..we ware the best and the bigger hat!" ( I told Elanor that Prince Charles looks like horse face... she goes...kee keee keee keee)
"Bill, my husband die with liver cancer!" ( I told her my liver problem and she told me I am lucky, I told her that "yes.... I am very bless for still breathing!)
"My husband and I had the best time, we stayed in Mexico beach house and went to all over the Europe, he is good looking man ( I still can see the love that she has for her husband)".
"Can you do the cross words with me" ( I told her that my English is very bad to do that, she doesn't believed it though!)
Then on TV, the show was about Olwen brothers biography! Then the new was saying how's actress Kate (I won't mention her last name in respect of Elanor) relation with one of the brother went bad!....Elanor poked my arm and said..
"Do you know that she is my relative, Her mother Golden is my niece....Well the mother is not even married with this guy but they are together for along time but I do not know what happen with Kate..."
I asked her will you visiting to them????....she said "Oh Golden lives in Canada, I do not have time to go see her this time"...............
Why I mention about Elanor??? Because her soul is so young to be with and lots of thing can talk with her....mostly she smiles and laughs!!
I was reading this week Newsweek magazine and found "What Old Age Taught Me" by Kirk Douglas.... He said " Old age, if you are lucky enough to reach it, is a unique esperience in life. You have to find the key to dealing with old age...."
He also said "As you get older you lose so many friends, you feel lonely, you get depressed. Depression is the greatest obstacle of old age. Depression is caused by thinking too much about yourself. Try to think of others, try to help them. You will be amazed how that lessens your depression. That satisfaction is priceless"
Lastly what I like of him said "Now in my golden years, I 've learned that you can't know how to live until you know how to give"....
I am so happy to see old peole like Elanor, my grand mama and Kirk Douglas.
When they boarding the plane in Dallas, Washington DC, I was sitting with my son. Robins was the same roll but the other side. Then an old lady came in with air line helper and seated her next to Robins. I did changed my seat to Robins's knowing he will be happier with his Son.
Elanor is the lady's name. She is 93 years old with well make up, good looking, nice diamond ring (remember I am a jeweller!), black top with light brown pant! She is a beautiful lady even with 93 years old. I like her red lipstick colour!!
Some of my friends who travel alots told me, how good looking guy is next to them and the smell was wonderful, how his eye's colour is all bla bla bla and he he he.......but I never have that kind of chance yet! For me most of the time fat, sometime very fat man next to me. Some time their smell are strange (well I am not sniffing but as you know the seats are stick together), some are snoring so loud too. I wish you see the man who seated next to me last year trip from New York to Tel Avis!! He is huge..way way huge and eat so loud, burbs so loud too..(me and him were in the first class folks!!). I was restless on that trip for can't even sleep because of his lousy snoring.
When I seated next to Elanor, I thought "an old lady????" but turned out to be a very pleasant trip and 5 hours to LAX was gone fast!
We starting conversation, it turned out to be a very nice conversation. She used to live in Florida, owned 2 club houses. After her best friend die she move to VA with her son and a daughter in law who is a doctor. The following are some of hers conversation that I wanted to share...........
" Helen, I do not want to stay with old people house. I like different people...mostly I like young people like you! Conversation is more interesting. Old people, they only talking about their health, and complaining most of the time"
"Helen I did lots of Cross Wards and knitting, this is the way I exercises my brain"
"I got a new doctor and I like her alots. The first one, she ignored me and I do not like her at all"
"Helen you do not eat? why ?? here take my chicken and eat it..(with loving ordered and she scoop her chicken grill salad into my plate! I goes oh oh oh )"
"You know that Prince Charles don't you! He came to play polo in the club once, oh..we ware the best and the bigger hat!" ( I told Elanor that Prince Charles looks like horse face... she goes...kee keee keee keee)
"Bill, my husband die with liver cancer!" ( I told her my liver problem and she told me I am lucky, I told her that "yes.... I am very bless for still breathing!)
"My husband and I had the best time, we stayed in Mexico beach house and went to all over the Europe, he is good looking man ( I still can see the love that she has for her husband)".
"Can you do the cross words with me" ( I told her that my English is very bad to do that, she doesn't believed it though!)
Then on TV, the show was about Olwen brothers biography! Then the new was saying how's actress Kate (I won't mention her last name in respect of Elanor) relation with one of the brother went bad!....Elanor poked my arm and said..
"Do you know that she is my relative, Her mother Golden is my niece....Well the mother is not even married with this guy but they are together for along time but I do not know what happen with Kate..."
I asked her will you visiting to them????....she said "Oh Golden lives in Canada, I do not have time to go see her this time"...............
Why I mention about Elanor??? Because her soul is so young to be with and lots of thing can talk with her....mostly she smiles and laughs!!
I was reading this week Newsweek magazine and found "What Old Age Taught Me" by Kirk Douglas.... He said " Old age, if you are lucky enough to reach it, is a unique esperience in life. You have to find the key to dealing with old age...."
He also said "As you get older you lose so many friends, you feel lonely, you get depressed. Depression is the greatest obstacle of old age. Depression is caused by thinking too much about yourself. Try to think of others, try to help them. You will be amazed how that lessens your depression. That satisfaction is priceless"
Lastly what I like of him said "Now in my golden years, I 've learned that you can't know how to live until you know how to give"....
I am so happy to see old peole like Elanor, my grand mama and Kirk Douglas.
Wednesday, August 13, 2008
summer 2008
We took.... may be 600 photos!
This is in Williamburg, VA. A nice historic town. I am sitting on the prisoners's toilet. I was amazed to see that the English's toilet is higher than the beds!
Tom Petty's shows! Another amazing to see that how Floridian are crazing about Tom!! People around me were screaming, dancing, and ofcourse drinking!! Having real fun. They group are origin from Gainesville, actually Robins's neighbour.
Remember I went to see my son future High School? This photo is in Mercersburg, Penn. State. The couple is the owner of former US President James Buchanan's house. It's a beautiful house, 11,000 Sq ft! Big House!
My son, Shan's future high shcool. In 3 years he is going to this boarding school. Shan just went the Tennis Camp in here, Van Der Meer Tennis! I was told that President Jimmy Carter's daughter, Amy also went to this Tennis Camp. This school produced smart, famous and good people as 2 Presidents, Some actors Examp...Jimmy Steward the other dude, I forgot his name???? attended this school . Hope my son become one of them. Well I said my wish!
This is in Williamburg, VA. A nice historic town. I am sitting on the prisoners's toilet. I was amazed to see that the English's toilet is higher than the beds!
Tom Petty's shows! Another amazing to see that how Floridian are crazing about Tom!! People around me were screaming, dancing, and ofcourse drinking!! Having real fun. They group are origin from Gainesville, actually Robins's neighbour.
Remember I went to see my son future High School? This photo is in Mercersburg, Penn. State. The couple is the owner of former US President James Buchanan's house. It's a beautiful house, 11,000 Sq ft! Big House!
My son, Shan's future high shcool. In 3 years he is going to this boarding school. Shan just went the Tennis Camp in here, Van Der Meer Tennis! I was told that President Jimmy Carter's daughter, Amy also went to this Tennis Camp. This school produced smart, famous and good people as 2 Presidents, Some actors Examp...Jimmy Steward the other dude, I forgot his name???? attended this school . Hope my son become one of them. Well I said my wish!
Tuesday, August 12, 2008
Back to Bangkok, Thailand
Hello everyone I just back to Bangkok this morning. I am so happy and so thankful....Life is wonderful!! This trip, I did lots of things I went all over United States..see so many people. I will share lots of our photos.
I am going to sleep now as I am very in Jet leg....but I will see you all on my blog soon.
Good to be back home in Bangkok!!
I am going to sleep now as I am very in Jet leg....but I will see you all on my blog soon.
Good to be back home in Bangkok!!
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