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david m. bailey: Bio & Treatment

david m. bailey

david spent his childhood in Beirut, Lebanon. He learned his first chords in 7th grade, went on to study classical guitar then soon after began writing his own songs, a passion he would nourish for years to come. The Lebanese civil war forced him to complete high school at a boarding school in Germany where he spent weekends as a street musician. In college, he played extensively in an original acoustic duo, but then put his guitar away and entered corporate America. Ten years later, doctors told david he had a malignant brain tumor (GBM) and would be dead in a few months. While pursuing aggressive treatments at Duke University that included radiation, surgeries and multiple chemotherapies, david left his corporate job and returned to his first love of songwriting and performing. Committed to sharing the hope upon which his life depended he began a relentless writing, recording and touring schedule. Now a 13 year survivor with 20 albums to his name and performances in 21 countries and 45 states, david and his music continue to challenge us all to live passionately and treasure the beauty of each new day His story has been featured on CBS News/48 Hours, 60 Minutes, Fox/Health, Family Health channel, NPR, and dozens of newspapers and magazines across the country. He performed in a wide variety of venues including churches, cancer celebration days, support groups, patient/ caregiver groups, conferences, retreats, & corporate events. In May 2003, he won the prestigious Kerrville NewFolk songwriting competition and shared the stage with many others. From Beirut to Budapest, from Pittsburgh to Portland, and on hundreds of stages in between, he inspired and entertained thousands of listeners and maintained a relentless tour schedule year round. When not on the road, david spent his time at home in Charlottesville VA with his greatest joys: his amazing wife, Leslie and 2 terrific teenage children, Kelcey & Cameron. In Nov 2008, david's tumor returned. After 2 surgeries, he underwent chemotherapy while still maintaining his tour schedule. He he more surgery in the late spring of 2010 and still made a final tour in July 2010.  david died on October 2, 2010, fighting to the very end with his tenacious hope, 14 years, 3 months post dx.

Treatment History

"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 14 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, 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 10:30 PM! 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, lower-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 - called NEURADIAB.] 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. Spent the next eleven years simply doing annual MRI scans, all of which showed no tumor. Blessed, to be sure. Then in November of 2008 I began experiencing a series of symptoms - balance, tingling, weakness. an MRI revealed an 8cm fluid-filled cyst and tumor. Surgery the next day removed it safely - but pathology indicated it too was a GBM so i proceeded with another dose of Neuradiab. Then I.V. chemotherapy - Avastin with carboplatin cpt-11 and other fun poisons. It is to continue for about a year. yuck - but I'm glad to be here."

[A second cyst was discovered in late April 2010 and surgery to remove that and some new tumor growth was performed in May 2010. David did not fully recover from that last surgery. He died on October 2, 2010, fighting to the very end with his tenacious hope, 14 years, 3 months post dx.]


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 neuro-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 [now 23] 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


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 HOPE"

david
info: www.davidmbailey.com
music: www.cdbaby.com/dbailey

Complete CD List

1. Peace
2. Love the Time
3. One More Day
4. Life
5. LIVE ( 2-CD)
6. Lost & Found
7. Rusty Brick Road
8. Coffee With The Angels
9. Living (DVD)
10. Silent Conversation
11. HOPE (2 CD Anthology)
12. Bittersweet
13. Two to See
14. Comfort
15. Some Quiet Night - (Christmas)
16. Faith: (Anthology)
17. All That Matters
18. Home by Another Way
19. Notes (Instrumental)
20. A Deep Well for the Pastor
21. LOVE; Still the Greatest

Gear

1995Martin HD-28 VS
Larrive classical
Larrive steel
Fender classical

L.R.Baggs I-Beam pickup & D.I
Elixer Nanoweb medium strings
2Shubb capos
2 Shubb partial capos
1Keyser DropD capo
1 Keyser 12string capo

Autobiography in song

My Grandma she was English, Grandpa was a Scott. My name sounds like Irish, but clearly I do not
I was born one rainy night beside the rivers three. Before a year had passed I was far across the sea
My daddy was a mission man, together with his wife Packed our bags and headed out to start a brand new life
First we flew to London, then we flew to Greece. Had a one way ticket to the Paris of the East.
The plane finally landed in the land where the cedars grow.
On a narrow street along the coast is where we made our home
And I can remember the smell of the wind.
The crash of the waves, the salt on my skin.
And I can remember the street called red.
The sound of the cars, the smell of the bread.
I was a child, that was my home. With all of my friends I was never alone
Places we went, games that we played. Rules that we broke, memories we made, ah, the memories:
My best friend was my hero, taught me how to take a chance.
My girlfriend was a sweetheart; she taught me how to dance
We were so young, young but not naïve: .we felt the dread of night and we learned how to believe
We believed in each other, we believed in our youth. We believed that our passion would lead us to truth
We believed in the future, we believed in the past. We believed that our memories always would last.
Then came the day when the sky turned black We hid in the hallways as we heard the attack
Guns on the corner, guns up above All come to to crucify this land that we loved.
Everybody had to figure out how they were going to cope.
With the presence of fear and the absence of hope.
Some people took to drugs, some people took to drink.
Feelings were ferocious and it hurt too much to think.
I picked up bullets from the rooftops, shrapnel from the shore.
After every battle, I went back for more.
It was a strange kind of balance between danger and delight.
We could get around the roadblocks but the end was out of sight.
Then I learned to play guitar, I started writing songs.
I sang them with a passion deep and wide and strong.
The times were touch and go but we made the choice to stay.
Until I got picked up and held hostage for a day.
We left the very next morning, past where the snipers were.
On up to the mountains, destiny, unsure
And I can remember the sweet scent of pine.
And my little blue bag with the things that were mine.
And I can remember looking down through the smoke.
At my city below, burning like a bad joke
Still just a child, but growing up fast.
Wondered how long the journey would last:
I got a ride on a very big ship to the island I knew well.
The journey was uncertain but I figured time would tell
Sometimes Time will whisper. Sometimes Time will shout.
Sometimes Time is silent, this time there was no doubt
I woke up as a stranger in the forest known as Black.
I did not burn my bridges but could not find my way back
So I learned a different language, I made some different friends.
On weekends I would hitchhike off to other foreign lands
I sang for my supper on a score of city streets.
Sometimes the nights were bitter but the company was sweet
I was more than a child, and I wanted to be A little bit wild and totally free.
Places I went, the songs that I played. The people I met, the memories I made, Ah the memories
I started a small band and wrote some brand new songs
Another teenage rock star trying to belong.
A gig in Yugoslavia, another one in France
Played for anybody anytime I got the chance
I drank some wine in Paris, in Munich I drank Beer. Coffee in the Alps where the air was thin and clear
There was a sunny day in Florence and a rainy day in Rome.
And that train I took to Zurich that got me half-way home, half way
2 years had gone by since I left my city by the sea. 2000 miles later I was still looking for me.
No longer a child, but not nearly grown. I didn’t know where I should call home
With so many roots in so many towns. My passport it was blue but my heart was brown
In the summer of my 18th year I was on another flight; West into the sunset, on into the night,
I did the college thing, 4 years and one degree. Found a real good job but lost the best of me.
Like so many others, I lost a faith in what I knew. Made a lot of noise but didn’t follow through.
Fell in love with a lady, gave her a golden ring.
As I found my way, she became my everything.
Along came a baby girl, then a baby boy. I was on top of the world They were my pride and joy.
Halfway up the ladder, my eyes on the very next rung, lost my head, fell down instead back to where I’d begun
**That was many years ago; a lot has changed since then.
Took a hundred heartaches but I'm singing once again Not just for my supper but because of Who I am.
I've seen the long dark night And I think I understand.
No matter what you live through Or how you survive. At the end of every day If you are still alive.
The choice is yours; share or to withhold. love and dream be meek or bold.
So I thank the Lord above for this life that's come to me. And that part of me that never left my city by the sea…
And there you have my story, More curious than some.
But you too have a story about where you are from
About the places you have been and the things that you have done.
About the people you have lost and the battles you have won
And you can remember the first time you knew
That God has a voice and was calling to you
And you can remember that day you said
You’d stop chasing ghosts and follow him instead
When you were a child, dreams were real. You knew what you thought, thought you know what to feel.
The years came and went; too many dreams died. The hardest are those you never tried
I’ll close with one reminder, something everybody knows.
This chapter is not over, this book has not been closed
If you think you Hear God calling out to you, That’s just what He’s doing; with words clear and true
A new page is being written as you listen to this song.
It’s not too late to start what you have put off for so long
So turn your face to the sun and keep on keeping on