As you may know, I have been living in Barcelona, Spain since June in an effort to help my family get a heavy dose of being "citizens of the world." We're loving it because we found our thinking to be too insulated living on an island next to Seattle. Now, as we meet new people from many countries, attend international conferences, and just pay attention, we are, as we hoped, broadening our perspectives. One area of discussion with patient-advocates here is how does a cancer patient get the very best care no matter where they live? Remember, this is in...

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For years cancer survivors rode along with Lance Armstrong, the phenomenal cyclist. Many of us wore the yellow bracelets of the LIVESTRONG cancer charity. I went through several until the last one broke a year or so ago. I was ready to get another one. But now Lance, a man who overcame metastatic testicular cancer and reached the pinnacle of sports success, has disappointed us all. The world cycling organizations have concluded he cheated, that he doped his blood to enhance his performance and gain an edge over others who played by the rules. As I write this, he has...

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I've been thinking a lot about television anchors and personalities. As they get older they encounter health issues, like the rest of us, and they get publicized because we think we know them so well. Is this helpful for our own health or does it sometimes go too far? Lately, there have been rumblings of criticism of ABC News and the producers of top-rated "Good Morning America" because they have focused so much on the bone marrow transplant for myelodysplastic syndromes (MDS) of their affable anchor Robin Roberts. When Diane Sawyer and George Stephanopoulos were at her bedside on TV,...

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I have always been struck by the development of the field of medical oncology. It's really not that old a specialty even though cancer has been around for eons. It used to be that surgeons cut out what they could when you were diagnosed with cancer. And after a while most people died from their disease. Then chemotherapy came. And people lived longer, not always better. Some were cured. Sometimes the drugs caused second cancers. Now we have many, many new "targeted therapies." And the field is changing rapidly and complexity of therapy is increasing. I have had a strange...

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This month (September) is Blood Cancer Awareness Month. It's pretty personal for me since I have lived with chronic lymphocytic leukemia (CLL) since 1996. When I was diagnosed it was difficult to find the information I needed, and that was one of the key reasons I founded Patient Power. Along the way I have met and worked with some incredible fellow “blood buddies” who are living with conditions such as lymphoma, myeloma, chronic myelogenous leukemia (CML), myelofibrosis and more. Many are not only “powerful patients” but are also powerful patient advocates who have founded, run or contribute to leading organizations...

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If you travel a lot, or you move to a new country as I have, you notice differences in people. Are people thinner than back home? Do they eat healthier food? Do they walk more and use their cars less? Do they smoke? As a reader of my blog you think about health issues. You are well aware of how personal decisions and lifestyle choices have a lot to do with your longevity and your quality of life now and in the future. So do you say anything when you see people who are very much harming their health? Here's...

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Peanut has a blood cancer – non- Hodgkin lymphoma - and she's getting great medical care. Do you know her? If you live in South Florida you might. This is one cancer patient who is getting a lot of publicity. Is she a movie star or politician? No. Is she a well-known patient advocate? No. Have we interviewed her on Patient Power? No. She doesn't even speak English or any language you or I would understand. Peanut is a twin female 8-year old orangutan at Jungle Island and a lot of people are following her story. There is even a...

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As you may know, I have been hosting audio, video and town meeting programs for patients since 1984. And, along the way, I became a patient too, diagnosed with CLL leukemia in 1996. I have been so fortunate to have been restored to good health for many years to let me "keep on keeping on."  Lately, however, I have felt strongly that we need new and additional voices and faces on Patient Power to help lead the conversation with the people we serve and take it in new directions and with new styles and innovation. In the coming months look...

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My 19 year old daughter had just flown back to the States after great travel through Europe. There's one more fling before college starts again – a rock concert in Chicago. And then she read a text from a close college friend. The 19-year-old is having brain surgery at a major medical center – UPMC in Pittsburgh. She's been having weird symptoms that affected her mood for months. And lately, there had been brief seizures. MRI showed a tumor on the right side of her brain and, as I write this, they are scheduled to remove as much as they...

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It wasn't so long ago for you and me – and still is for millions of others – that whatever the doctor said was all that mattered. And usually the doctor didn't say all that much. He or she would tell you what they thought was wrong with you and what they were going to do about it. We simply nodded our head and wanted to get well. Then the Internet came along and we started talking to one another. And we started talking about our test results. The newbies would ask the patients who were diagnosed years before, what...

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October 2012
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