Some oncologists use social media to strategically pursue their professional goals, but Krupali Tejura, MD, is not one of them.
A radiation oncologist at Wilshire Oncology Medical Group Inc. in Corona, California, Dr. Tejura writes a blog as a way of processing some of the interactions she has with her patients, and she uses her Twitter feed like a megaphone to the world.
Dr. Tejura's use of social media allowed a young cancer patient to watch Ellen Degeneres dance on the set of her television show, a California patient to sit in the Heinz Suite at a Pittsburgh Steelers game, a Dutch violinist to give VIP concert tickets to a dying fan, and a man in Uganda to get a new leg—all since April of this year.
This fall, Dr. Tejura will have made her second appearance at a Twitter conference in Los Angeles and she was also asked to speak about her experiences with social media and medicine at a TEDx conference on “ideas worth spreading” in New York City.
OT: How did you get started blogging?
Krupali Tejura, MD: I've been a blogger since about 2003 when I was a resident. I did blogging anonymously because I didn't know the rules for blogging with my residency program or the institution.
During residency, I used to follow the “My Cancer” blog on npr.org, which was written by a man named Leroy Sievers, a Stage 4 colon cancer fighter who used the blog to write about his daily tribulations. One day I was reading his blog, and I sent in a question “I'm a resident in radiation oncology, and I'm finishing up in four months. What advice do you have for cancer physicians? What do you like or dislike, and what can I do to improve?”
The very next day, a patient told me he wanted to write about his experience with cancer, and I sat him in the residents' office and pulled up the “My Cancer” blog for that day, which I thought might give him some ideas about how to get started. He started reading and said, “Hey, they're talking about you.” Leroy Sievers had posted my question on his blog and it got 400 comments overnight.
After I finished my residency, I traveled to Nepal, Tibet, India, Thailand, and Bhutan for two months. And I did a little travel blog so those who couldn't travel because they were on chemo or radiation could read the blog and sort of travel with me.
Now that you blog with your name attached, what is the purpose of your blog?
Especially during sad cases, it is sort of a catharsis for me. I'm basically writing for myself and sharing that with the world. I don't really have an audience; I'm just writing for me.
When did you first recognize that Twitter could help a cancer patient?
I have a patient support group called Ruby Red Slippers, and at one of our meetings, I heard a young patient with Stage IV cancer say she wanted to go to the Ellen show (Ellen Degeneres' talk show). I went on the Ellen website but I could not get any tickets.
So I put it out on Twitter, and a follower of mine who is a breast cancer survivor who works in the industry—she's a makeup artist—got two VIP tickets so I could take my patient. When I first met this girl, she was metastatic and couldn't walk because her knee was riddled with cancer. But by the time we went to the show, she was walking on her own, which was amazing.
That showed me the power of Twitter to fulfill a dream.
The following week, Jeff Pulver, who organizes the #140conf series (conferences about the use of Twitter) asked me to speak at a conference at the Comedy Store on Sunset Boulevard in Hollywood. I told about helping this girl's dream come true by using Twitter. And then I mentioned, “I know a terminal patient whose dream is to go with her husband to see the Pittsburgh Steelers play. She doesn't have the finances to do so, so if anybody has frequent flyer miles, connections to anywhere, Steelers, whoever, let me know. Follow me on Twitter, message me, and we can connect.”
Jeff Pulver stands up and says, “I'm donating you my frequent flyer miles for two tickets.” This other guy walks to the stage and hands me $20, and said, “Let's get this lady to Pittsburgh.” It was one of the most incredible moments of my life, where everybody is passing along a buck, five bucks, whatever, and I'm walking off stage with a stack full of money.
The next morning, I get an email from Yahoo, saying, you know, “We love what you do …and we'd love to donate the hotel room for your patient when they're in Pittsburgh.” Somebody else donated the rental car. And then they were given tickets to sit in the Heinz Suite for the home opener.
You gave concert tickets to a patient so she and her husband could attend a concert by Andre Rieu, a violinist they had followed on PBS for years. How did social media figure into that story?
When they opened the tickets, they were so happy, and so was I. This patient was scheduled a month later for a follow-up, and the morning she was supposed to come in, I got a call from a medical oncologist's office telling me that she was having headaches and the MRI showed brain metastases. When I saw her, her first words to me were, “Doctor, do you think I'll live for the concert in December?”
That night I went to Target, and I don't even know what Andre Rieu looks like, but I'm running around the store and my eyes automatically go to this Andre Rieu classical CD. And I decided I needed to buy this CD and give it to her the following day, and write on a prescription pad, “You must listen to this once every day.”
When I got home, I wrote a blog post called “Music of the Heart,” telling the story about this woman. And I asked anybody who read the post for a favor, and that is to send her good thoughts, prayers, etc.—hopefully to get her to the concert, because that is what she wanted. Then I put it out on Twitter.
The next day, a follower of mine in the Netherlands tweeted me and said, “Did you know Andre Rieu is Dutch? Did you know that he is on Twitter? This is his ID.” And I said, “Let's all Twitter him the story, and maybe he'll read it.” On July 5 at 3 pm, I get this message saying, “I would love to help your patient. Let me know what we can do. Regards, Andre.”
Two days later, I had a conference call with his management team from Amsterdam. They offered my patient front-row tickets for the concert in December, and they asked me and a guest to come as well, and for us to meet Andre and his orchestra after the concert. They said, “Give us her address and we'll mail our DVDs and CDs to the patient to kind of keep her hopes up.”
And then there was the time you used Twitter to help arrange for an amputation in Uganda—how did that happen?
My parents were born and raised in Uganda, and they were refugees after the 1972 Idi Amin coup. My dad is a pediatrician and my mom is a pharmacist. My dad found out about this medical trip to Uganda, so he decided that he wanted to go, and my mom wanted to go, and I had two weeks' vacation, so I said I'd like to go, too.
The camp was 10 days, and the patients lined up from 6 in the morning—1,600 to 1,700 patients a day. Even before the camp started, I spotted a man with severe elephantitis. He has had this elephantitis for three years, and his wife and children had left him two years ago, so he was basically alone.
The way the hospital works in Uganda is you have to bring your own bed sheets, usually some of your own medications, your own food. So if you don't have family or social support to bring you food in the hospital, you don't eat. That kept him from going to the hospital and getting treated, because who would take care of him after he got the amputation that he needed?
So the first night, I blogged about him and put a picture on my blog, trying to raise money. And we raised about $1,000 for him overnight, which was incredible. Somebody on Twitter actually taught me how to do this using ChipIn (http://www.chipin.com).
I had never asked for donations, but people were asking “How do I donate money? I want to do something.” A lot of my Twitter followers helped by re-tweeting what I was tweeting.
The following day, he had his leg amputated. That evening, my dad and I went to a local pharmacy and got him pain medication, syringes, IV bags, antibiotics, etc., and we brought it to the hospital for him. I met with the surgeon, and then every day for 10 days, I would bring him lunch, T-shirts, clothing, medications. The day I left, he was getting fitted for a prosthetic.
What would you like other oncologists to know about social media?
It can be used for amazing social good!
I had a lung cancer patient—a young guy with two kids—who looked really down and out one day when he came to my clinic. He used to be a truck driver, and he was so low that when he had a flat tire, he was too tired to change it. He told me that his family was going to church for groceries and his child's birthday had been the day before and they could not afford to celebrate the way they wanted.
That morning, right before I saw him, the girl I took to the Ellen show had come by to say thank you and gave me a beautiful box of cupcakes. So I ran into my office, got the cupcakes, knowing she wouldn't mind, and I said, “Celebrate your kid's birthday with these.” And then I put it out on Twitter: “A young family in need…if anybody has gift cards to grocery stores, or whatever, please consider giving.”
With that, we got over $500 in gift cards.
When you throw something out to the world, and believe in it, someone will listen.
Radiation Oncologist, patient advocate, writer, scuba diver, traveler, music lover, TEDster, dreamer…
#5 in a Continuing Series
(Previous profiles appeared in the 4/25/10, 5/25/10, 7/10/10, and 9/25/10 issues, of Raymond DuBois, Douglas Blayney, Naoto Ueno, and Anas Younes, respectively—all available at oncology-times.com, either in the Archives or in Collections)
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