Ten years later—God is good: Brain tumor

Ten years, 14 albums, & 43 states later, David M. Bailey and his music are alive and well, challenging all of us to live passionately and treasure the beauty of each new day. Here’s David’s story:

I was diagnosed with a GBM IV (glioblastoma brain tumor) in July of 1996. After a month of excruciating headaches, I fell over one morning; my family called an ambulance, and then I was life-flighted to a larger hospital where I had emergency surgery to remove a baseball-sized tumor. The surgery was extremely 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 I was not 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-oncologist - someone who specialized in heads.

We contacted one hospital but were not satisfied with their responsiveness. I searched on the Internet and found an amazing 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 [I was 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 my intellectual, emotional, and spiritual needs.

We never looked back!: The Treatments My scans showed a lentil-sized piece of tumor that remained. By Thursday of that week we were coming home with the first round of pills for a new promising chemotherapy trial called Temozolomide (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 Temozolomide 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 which was surgically removed.

The Annoying & Important Stuff
In late 1998, we noticed a loss of peripheral vision on my left side. I tried 'prism' glasses to help correct it, 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. The final report said I still think 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 my 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 6-month checkup cycle and on July 4, 2006 celebrated 10 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 are 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. 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 is the gift of life and how fulfilling the moments can be. I returned to music and gradually began a new life as a full time performing songwriter, and there are a million other smaller dreams I'm still working on.

Reminders & Resources 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.

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 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.


The Brain Tumor Mailing List: This is an astounding resource where over 900 patients, caregivers, and medical professionals from around the world to ask questions, make comments, and provide answers to just about anything you can think of. I've made countless friends on the list who are a big part of my life today. To subscribe: check out thebraintrust.org


Websites There are a LOT of great websites with brain tumor information. I suggest starting with the following: Al Musella's List of Clinical Trials and Treatments - http://www.virtualtrials.com The National Brain tumor Foundation - http://www.braintumor.org The American Brain Tumor Association- http://www.abta.org



David took a crash course on his condition. He found a hospital that was responsive, and found a doctor he trusted, who cared more about him than about research. His faith, friends and family, and belief in his future sustain him.

Read an inspirational story of a stroke survivor, or David’s full source story.