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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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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There has been a healthy discussion following my most recent blog entry, and, once again, we have learned much from each other. It's important to remember, first of all, how much we have in common as we progress with our treatments. We are not alone. As I noted in my previous blog, we are often dealing with a nebulous set of symptoms (fatigue, sweats, and decreased endurance) that lead to frustration over what we can no longer accomplish. One of our commenters referred to fatigue in particular as a "life-stealer,” which is the best description I've heard. Can we take...

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Ha nacido la Patient Empowerment Foundation (PEF) -Fundación para el Empoderamiento del Paciente- una organización que ha empezado a trabajar para que todos los pacientes del mundo tengan acceso a las últimas informaciones sobre su enfermedad. Y también, para que se sientan inspirados y acompañados por otros pacientes. ¿Cómo vamos a hacerlo? Proporcionándoles contenidos y herramientas digitales. La Fundación, impulsada por Patient Power, es una organización con vocación global pero con sede europea. Su organización hermana es la Patient Empowerment Network, que trabaja en Estados Unidos con los mismos objetivos: empoderar a los pacientes del mundo. PEF nace con vocación inclusiva: "Queremos...

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I am gratified by the excellent feedback I received from the first edition of this blog. There are so many thoughts I want to follow up on with future discussions. Today, I’m going to continue with my own story as a further illustration of what we all have in common. The first order of business after my diagnosis was to determine the current involvement of the disease and to get a sense of my baseline symptoms. Like most people with a full-time job and kids at home, I laughed when I was asked if I was experiencing fatigue. Yes, I...

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Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think. — Horace If you live in the contiguous 48, you know few things are as exciting as freshly fallen snow. I remember as a 4-year-old making my way downstairs from our North Seattle home to fetch Dad the morning paper. Upon opening the door that early December day, I was surprised by the precious little tufts of white floating down to their final destination. I immediately bolted back upstairs, tore into my...

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Enric Barba lo tiene claro: "Hay que buscar al mejor especialista en tu enfermedad. El médico que va a congresos internacionales y que está al día de los últimos tratamientos y técnicas". Barba tiene un melanoma en fase III y recibe tres inyecciones semanales de interferón para mantener fuerte su sistema inmunitario y evitar la metástasis. Fue diagnosticado hace un año, después de que un dermatólogo le había dicho que no debía preocuparse por la mancha que tenía en el pecho y que resultó ser un melanoma nodular. Por este motivo Enric está tan convencido que "es indispensable localizar al...

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There is nothing like the shock and confusion felt with the words, “I’m sorry, you have cancer.” However, with those words, my journey began. Following 48 hours of exams, tests and scans, I was diagnosed with non-advanced anal cancer. According to my medical team, my physical response to chemotherapy and radiation treatment was similar to that of other patients, but the sexual health side effects realized after treatment surprised them all. I was told on two separate occasions sexual dysfunction would not be an issue. Once I was cancer-free, that was unfortunately not the case. Talking with Doctors About Sexual...

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Page last updated on April 25, 2019