It’s almost unfair to my loved ones: A brain tumor support group

Jeffrey Schanz of Washington, DC is an 11-year survivor of a glioblastoma. After treatment, he was able to return to his high-pressure job with the U.S. Department of Justice as director of the Office of Policy and Planning within the Audit Division. He recently accepted a new job as inspector general of the Legal Services Corporation, which provides legal assistance to low-income people.

Jeffrey, age 56, runs a support group at the George Washington Cancer Institute in Washington, DC. Support group members share nutrition and exercise tips, information about alternative therapies, and humor.

Attending a support group helps him deal with the ups and downs of his recovery. Though his thinking is about the same as it was before the brain tumor, “not every day is a good day….There have been cases where I’ve had to be more deductive to figure out what was going on instead of just snapping my fingers and going, ‘Oh, yeah, I understand that...' In the brain-tumor world we call it a ‘new normal’ because you’re never going to be the same person," he says.

He understands the need for camaraderie. “It’s almost unfair to my loved ones,” he says, “but I’m more comfortable with brain-tumor survivors because we all know what we’ve gone through. It’s still hard to articulate how hard you have to fight.”

Advice to people with a brain tumor: Find a support group to participate in.

Read another brain tumor story.

Thanks to Stephanie Cajigal for the source story in the September/October issue of Neurology Now.

So I might as well do it: Pan-Mass Challenge

Rebecca Hopkins, now a junior at Salve Regina University in Newport, Rhode Island, has survived a brain tumor, surgery, chemotherapy and radiation. She will be one of 5,000 bike riders next week in the Pan-Mass Challenge, the annual 192-mile bike ride to raise money for the Dana-Farber Cancer Institute.

She will ride in honor of her doctor, Samuel Blackman, who treated her when she was a teenager.

"To be able to help people and give them a better life, that's great," she said. "It's something I can do, so I might as well do it."

She was first diagnosed with cancer at age 11. Part of her brain tumor was removed, but began to regrow in a few years. After radiation, she is now virtually symptom-free.

Dr. Blackman says, "When you save a pediatric patient, you don't just save a life, you save a future. Rebecca and her fight are proof positive of that. This is a person who I know is going to make a difference in this world."

"We have the cachet of being the Tour de France of charity events," said Barry Starr, the founder of the fund-raising event.


Advice to cancer survivors: Keep on truckin’. And bikin’.

Read about another Tour de France cyclist and cancer survivor.

Thanks to Adrian Walker for the source article in today’s Boston Globe.

The furthest you could be from courageous: Attitudes toward one's own cancer

Although public figures like Teddy Kennedy promote enduring impressions of the stalwart, pumped-up spirit, Dr. Joseph Finns says patients themselves often describe a more nuanced, evolving journey.

When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, "Everything went dark, went blank," he recalled. "I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, 'How long do I have to live?'"

Faced with potentially harrowing repercussions from a biopsy, Robert, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. "I never felt brave or courageous," he said. "I don't know what that means. I was scared. I was the furthest you could be from courageous."

That was 15 years ago. Now 61, he paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. "Some people in my group don't want to hear the upbeat scenario," he said. "The way they're coping is completely the opposite because they feel they may not make it."

Dr. Finns' advice to patients: There's no scripted way to handle this. Write your own script based on your own narrative.

Read a story about Teddy Kennedy’s brain cancer.

Thanks to Jan Hoffman for her source article in the June 1 issue of the NY Times.

I still walk a little funny: The kick-butt chaplain’s faith

In 1996, doctors found a benign tumor in her brain the size of a tennis ball. The day after it was removed, she had a stroke. Her right side became paralyzed.

"I was frightened and mad. Mostly I worried about my husband and daughters: What about them?" said Chaplain Margaret Muncie.

So many people prayed for her. She was not allowed to abandon hope, not through the years of physical therapy that reduced her paralysis to a lurching limp, thanks to a recently fitted electronic neurostimulating device she calls "my own little miracle."

"I walk faster now. I’m the kick-butt chaplain." Now she is in her fifth year at St. Luke's-Roosevelt Hospital in New York City.

She says her core belief about healing is found in Psalm 121: "My help comes from the Lord, who made heaven and earth," – spirit and body, faith and medicine.

Her own experience deeply informs her ministry now. "In Scripture it says, ‘Get up from your bed and walk, your faith has made you well.’ ‘Well’ doesn’t mean perfect. But wholeness and healing can happen, even when there is still brokenness on the outside. I’m more whole than 12 years ago. But I still walk a little funny."

Advice: Faith and medicine are a powerful combination.

Read one of our brain tumor survivor stories, or read more from Jan Hoffman’s article in today’s New York Times.

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.