We’ve just recorded Patient Café discussion #6 for people living with CLL. Even before all the discussions have been posted, the content has been viewed more than 6,000 times as people “drop in” for a cup of education, empowerment and community. I am so gratified we came up with this innovative and convenient way for patients to connect and sound off and kudos to discussion leader Carol Preston, a CLL patient herself, and the Patient Empowerment Network for acquiring funding. I hope we can produce many more in CLL and then other conditions we cover. I envision many cafés humming...

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It took me a long time to admit to others and myself that I was a cancer patient. But after that, it took an even longer time to see myself as anything else. I'm trying to transition back into normality. Just a couple years back, I was enjoying the prime life: attending college, living on my own, paying my own bills for the first time, and in charge of my own life. I was in a constant high state with all the freedom I had—and loving the responsibilities. January 2014, my senior year and last semester, I was diagnosed with...

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Ten years ago I didn’t know very much about the color teal or ovarian cancer. I did go for an annual Pap Test but that was the extent of my knowledge of gynecologic cancers. Since my sister had been diagnosed with breast cancer at the age of 42, I knew much more about pink and breast cancer. Then I was diagnosed with stage III ovarian cancer. At first I was just too busy getting well to even think about the fact that I could do something about being clueless about gynecologic cancers. But I finished chemotherapy, my hair grew in...

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My adventure in the world of CLL started in February 2013, when during a routine physical, my physician noted that my white counts were “elevated.” Having a rather offbeat sense of humor, he was certain that his blood analyzer was faulty, and a second blood test would most definitely prove that. Well, the exact same numbers came up, and while he insisted that his machine was clearly broken, perhaps I should go see a hematologist. After a battery of unpleasant tests and trips to multiple hematologists, I was diagnosed with stage I CLL in June 2013 and clinically have been...

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Today we announced our partnership with Health Unlocked, this is the press release we have sent to the media. Two Online Health Leaders Team Up to Assist US Cancer Patients September 8th, 2015, HealthUnlocked (HealthUnlocked.com), one of the world’s largest social networks for patients, is teaming up with Patient Power (PatientPower.info), the pioneering channel that features online videos with experts for cancer patients. The goal is to facilitate more active discussions among cancer experts and cancer patients and family members who live in the U.S. and fill a need not satisfied by Facebook or most patient advocacy organizations. London-based HealthUnlocked...

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This spring, I had the honor of speaking as part of a panel of doctors and patients in Phoenix, AZ, for a one-day melanoma town hall produced by the advocacy site PatientPower.info. Andrew Schorr, a two-time cancer survivor and founder of Patient Power, hosted the event that brought together a local audience, as well as online viewers. Andrew and his team did a great job of getting the right people together to present the entire view of melanoma and how to begin to confront and deal with a cancer diagnosis. While I have done a bit of speaking so far...

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Trevis and Andrew in Dingle Trevis Gleason could have dropped into deep depression when he was diagnosed with multiple sclerosis years ago. He was a skilled chef, had a budding career, and a million ideas, recipes and passion. But that’s not Trevis. Despite the progression of MS and the medicines that no longer stop it over the years since diagnosis, he has become even more energized. That was apparent when Esther and I visited Trevis and his wife, Caryn, for a few days recently at their new home in stunningly beautiful Dingle on Ireland’s southwest coast. I first met Trevis in...

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Randall Goskowicz and Zoey I was reflecting on the heroic ways my fellow patients go about their day and struggle not to be defined or confined by their disease. We all have our secret methods of coping, which—in speaking to my fellow clinic patients—run from changing socks after a night sweat to the overall benefits of chocolate. I would be holding back if I didn’t reveal my personal therapist: my dog Zoey. I regret to expound in this manner and make extensive apologies to non-dog people who I don’t get the connection between Homo sapiens and Canus familiarus. Still, I...

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The other day my hematologist said to me, “You’re boring.” That may be the nicest thing anyone has ever said to me. His “compliment” came nine years after I had been diagnosed with CLL, chronic lymphocytic leukemia. On this visit, my blood numbers looked nearly perfect. I could exhale for the next few months until it was time to return to check those counts again. July 2006 marks my “before” and “after” moment with CLL. On July 3, I was being checked for what I thought was a stomach issue. On July 5, I was told that I probably had...

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Odds are you are traveling sometime this summer. When I travel my favorite thing is to chat with people and listen to their stories. Typically, when I share what I do—telling stories for cancer patients and family members—more stories are served up to me. Right now, Esther and I are in Ireland. I wanted to share some of the stories I’ve heard here that cover everything from epilepsy, to Hodgkin lymphoma to living with CLL long-term and newly diagnosed. There are common themes across all of them. Michael Rynne and Andrew Story #1 - Dropping into the Whiskey Fair in...

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