[Editor’s Note: This blog was reprinted with permission by the author]. Yesterday was a traditional day of celebration as it was my birthday. But in my eyes, the importance of my birthday has now been superseded by today’s anniversary. Three years ago today, the day after my birthday, I was diagnosed with cancer. While my birthday measures the days since I came into this world, I now feel a greater sense of celebration when this new milestone of survival passes by. Three years ago, my life, as I knew it, spun off on a terrible tangent. I was thrust into...

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Sin duda, el cáncer es una enfermedad que conlleva un importante estigma. Para luchar contra él, hemos organizado un Tweetchat (debate en Twitter) junto con nuestra amigas de Asaco (Asociación de Afectadas por el Cáncer de Ovario). Hablaremos del por qué de la estigmatización del cáncer y cómo podemos ayudar a normalizar esta enfermedad para que los pacientes no se sientan mal. Será el próximo jueves 26 de mayo a las 18h y contaremos con la oncóloga Diana Alonso, autora del libro "Nosotras lo valemos". El hashtag será ?#?CáncerSinEstigma? . Para participar sólo tenéis que conectaros a Twitter a la hora indicada y poner...

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A new friend of mine from online calls herself “Pain Warrior’s Code” (or @PainWarriorCode on Twitter). Her bio reads: “A pain warrior who had hit rock bottom, got up & decided to give hope to other pain warriors. I’ll fight beside you.” I remembered those words one day as I was struggling to write this article on ET Frustrations about “support.” Stopping to take a break, I went on her Twitter page, and she’d just posted this tweet: “Anyone ever have those moments when family members say something really inconsiderate regarding your illness? How do you cope?” Seeing that stopped...

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My financial advisor and friend, Jeff Ross, has been talking to me about a dessert company in Seattle, our old hometown, where they urge customers to “eat dessert first.” Now, at 65, but still working vigorously, and—as you know—living with two cancers, CLL and myelofibrosis, I’ve been making this my golden rule. We recently moved to San Diego by choice. We’re back from three years in Barcelona, Spain and wanted to be close to aging family members in Southern California and grown children on the West Coast. It’s expensive here! Rents are soaring, and home purchase prices are sky-high. But,...

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I was just looking at my Facebook memories. I love those! I find myself posting things I want to remember to Facebook now so that they will show up in my memories in the future. Am I the only person who does that? Today, in my memories, was a quote from Abe Lincoln. It stirred me enough to consider using it as a topic for my blog entry. Ol’ Abe is credited with saying, “I have found that most people are about as happy as they make their minds up to be.” What do you think? Do you agree? I...

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[Editor's Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power's amazing community members. Jamie shares with us her latest news. For previous conversations and blogs with Jamie, click the link(s) below.]  Jamie Pires: Living Well With CML After 11 Years Every morning, my alarm goes off earlier than I need to get up so I can get to the kitchen, plug in my electro-perk pot, slip back into bed, and reset the alarm for 30 minutes...

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“I have some strange symptoms. I am itching all over, and it is uncomfortable when I urinate.” It was November of 2011, and I was out of town in Missouri when my husband Robert called and told me this. I told him to go to the doctor right away. I had never heard of such symptoms, but my guess was that he had a urinary tract infection and needed antibiotics right away. Robert went to our internist in Plano, Texas and, fearing he had a gall stone, he ordered blood tests and a sonogram. Robert called me to tell me...

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After a long day of work, it was well after 5 PM, and I needed to be at my regular training session by 6:30. I started shuffling around the house getting ready including gathering the water bottles, hydration drinks, energy bars, and all the other required gear together. By 5:30, the car is packed, bike is strapped on, and I am winding my way through traffic. I turned on the radio and listened to a few songs. When I got close to the training studio, Bob Dylan’s “Shelter from the Storm” started playing. “...I was burned out from exhaustion, ….Come...

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"Ser donante de médula te hace muy especial, con tu donación puedes dar vida a otra persona". Así nos lo explicaba Marteen Weijden, que superó una leucemia aguda con un trasplante de médula ósea gracias a que alguien, algún día, decidió ser donante de médula. También salvó su vida Pilar, valenciana, gracias a que una madre italiana decidió donar el cordón umbilical de su recién nacido. Las células madre de la sangre de cordón hicieron posible la curación de Pilar. Ahora ella tiene dos hijos: "El gesto de esa madre permitió abrió la vida a tres personas", explica. Estas y otras...

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The other evening, Esther and I had a chat with a friend who is a leading researcher in a neuroscience field. I started asking him about the business side of trials and the relationship between sponsors (usually drug companies), investigators (prominent physicians) and patients. There are some behind-the-scenes issues that are important for you to think about when and if you consider participating in a clinical trial. Note: I am a big fan of patients considering trials as I believe the two that I have participated in have greatly lengthened my life. Okay, let’s get into the nitty gritty: No...

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Page last updated on April 25, 2019