I am fortunate enough to have some strange and offbeat friends. One in particular really stands out. He is a gifted educator with an offbeat humor, sardonic wit, a big smile and even bigger heart that matches his 6’6” frame. He IS a big guy. Among many things, he taught an interdisciplinary senior design course that over the years has included thousands of college students from architecture, art and engineering programs. His class was renowned for its “humorous engineering 101” module. For example, one year the humorous engineering problem assignment was a take-off from the movie “Monty Python and the...

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Cuando hace 30 años Montserrat Domènech quiso saber si podía tener un hijo aún sufriendo cáncer, lo preguntó por carta a unos oncólogos de Estados Unidos. Nunca le contestaron y ella tiró adelante con su embarazo. Hoy, con un correo electrónico o incluso un Twit hubiera contactado de forma inmediata con esos oncólogos al otro lado del Atlántico. Domènech, presidenta del Grup Àgata -organización que ayuda a mujeres con cáncer de mama-, explicó esta anécdota en la mesa redonda sobre pacientes y tecnología organizada por Health 2.0 y laFundació iSYS, que tuvo lugar esta semana en la Academia de Ciencias Médicas (Barcelona). Teresa Bau, responsable de Comunicación de...

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A few weeks ago, I wrote a blog called You Only Live Once, which was the attitude we embraced when my husband and I decided to grant our children’s greatest wish—a dog! This was a big decision for us—and one we didn’t take lightly. And it’s a decision, I am happy to report, that I am really glad that we made! We had been telling the kids for weeks that it was too soon for us to get a dog—they weren’t old enough yet and just weren’t ready for the kind of responsibility that comes with having a pet.   Up...

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Greetings from 35,000 feet as I head from San Diego to Miami to help educate executives of big pharma about the perspective of patients and family members affected by cancer. Thank you to 15 other patients who will join me on live video from around the world! As you know, I am a big believer in telling doctors and the medical industry how they can do better for us. But, at the same time, I have been asking YOU how WE can do better for you. Nobody is perfect, right? And we all have to work together to help people...

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Patients are increasingly being listened to in the healthcare system, but not yet enough. Next Wednesday January 20 in Barcelona they will have the chance to have their say. In an event organised by Health 2.0 Barcelona and the iSYS Foundation, patients and patients associations will explain how technology has changed the way they manage their condition, what’s their view on mobile applications and how they use social networks. Among the speakers will be Lupus advocate and blogger Nuria Zuñiga (@tulupus); Neurologist and NMDAr patient Domingo Escudero (@EscuderoDomingo) (see interview); breast cancer advocates from Agata Group (@agataenmarxa) and representatives of...

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Aunque cada vez tienen más voz en el sistema sanitario, los pacientes aún no son escuchados lo que se merecen. El próximo miércoles 20 de enero en Barcelona, ellos tomarán la palabra. En un acto organizado por Health 2.0 Barcelona y la Fundación iSYS, pacientes y asociaciones explicarán cómo la tecnología ha cambiado su forma de gestionar la enfermedad, qué opinan de las aplicaciones móviles de salud y cómo usan las redes sociales para su beneficio. Hablarán Nuria Zuñiga (@tulupus), paciente de Lupus y bloguera; Domingo Escudero (@escuderodomingo), neurólogo y paciente de encefalitis autoinmune; y representantes del Grupo Agata (@agataenmarxa) y de...

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At the last update, I’d just had a stem cell transplant—three years ago now. Since then, I have been in good shape, taking one pill a day, and a quarterly bone-strengthener, and except for a bout with pneumonia in 2014 and numbness in my feet, I’ve had no infections, colds or other gremlins to deal with. In this, I’ve been unusually fortunate, but it’s not unheard of in the myeloma world. Statistically, I can go another year without it progressing, so all is looking pretty good right now. There have been seven new drugs approved to fight this particular blood...

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Okay, ‘fess up! Did you make a New Year’s resolution? Do you aspire to being a better person, regularly exercise, and generally take better care of yourself? In my case, I promise to be more chilled out, less edgy and try really, REALLY HARD not to be “wrapped tightly” as my friends, family and healthcare team continually chide me about (I think I HAVE chilled out, but that is a different conversation.). As the new year has begun, it would be easy to call it a day with the clichés about how much better we will be at whatever is...

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As the year ends, we ask ourselves, how has it been, and are we hopeful going into the next? My feeling as I reflect is that 2015, when it comes to cancer, was a year of significant progress. But that is always tempered with the losses. Joanie Mass (right) with her partner Carolyn Hewitt A couple of weeks ago, we lost one of my "cancer buddies," Joanie Mass, a former physical education teacher who had been living with breast cancer for more than 10 years. At an annual Jewish family camp year after year, along with our friend Seth, the...

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You only live once. This expression—or the acronym YOLO—has gained mass appeal in the past few years.  I feel like people say it all the time, usually to explain their carefree attitude or sometimes a seemingly irrational decision.  When you get diagnosed with an incurable (though treatable, I am constantly assured...) disease like multiple myeloma—which I was 14 months ago—the idea that you only live once crosses your mind quite a bit. I wouldn’t normally describe myself as a big risk-taker, pre- (or post-) diagnosis.  So my “YOLO” attitude has usually been more about not wanting to wait to do things...

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