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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The other day I visited my Seattle oncologist. As I entered the elevator to leave, a familiar face turned toward me with a smile. I knew that I knew this man but his name escaped me and he looked different. But he certainly knew me. We entered the elevator together along with his companion, a woman. The smiling man looked a bit jaundiced and he had no hair. As I began to recall how I knew him it hit me his looks had changed – a lot. “What brings you here to the oncology floor?” I asked. The smiling man...

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The other day in the local supermarket I bumped into a neighbor who gave me bad news. She said a friend in town had been diagnosed with a stage four cancer and was in the midst of treatment. The patient is someone I am fond of and I was shocked to hear about her illness. That night I called and spoke with her husband, a very warm and caring man. He told me of the diagnosis, the referral to an oncologist and the move into standard treatment. I asked if they sought a second opinion. No. Did they ask about...

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Anyone with a serious diagnosis knows it not only scares you, it scares the people who care about you. Hopefully, over time, your condition gets better, as it has for me with leukemia. You feel better, are less worried, become more knowledgeable, and you begin to go on with your life. The illness may still be there, and you still you need checkups or some treatment. But you move on. But for your friends who may not nearly be so much in-the-know, they may still be a few steps back in “worryland.” This past weekend I experienced that when I...

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Discussing cancer with adults can be difficult, but most adults have some experience with cancer and can relate to this in some way. How you discuss cancer with children is more complex but I believe there is important good news to share. Last Saturday I was the invited speaker at the American Cancer Society’s Relay for Life event at the high school in my hometown, Mercer Island, Washington. There are many such events happening right now across the nation. A couple of hundred young people ages 15-18 sat on the grass in the sun as we kicked off the afternoon...

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I spent one day last week at MD Anderson Cancer Center in Houston.  I was there for a checkup, having first visited the center 16 years ago. There are several new buildings now and its much bigger, but the leukemia center is still on the 9th floor and many of the people who work there are still the same – only a bit older, just like me. One of the things I love about the leukemia center is that it hasn’t moved. The waiting room is sizeable but quickly becomes jammed with people. They have chronic lymphocytic leukemia or CLL,...

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There are big companies like Quintiles that run clinical trials around the world. There are local clinics that specialize in clinical trials and make a lot of money at it. There are, of course, pharmaceutical companies and device manufacturers who depend upon the results to gain marketing approval for new products. People in all those groups know a lot about trials. But the perspective that counts is the view from you and me – patients. Most of us do not enroll in clinical trials. We don’t want to get too up close and personal with anything “experimental.” And often our...

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I had breakfast this morning in Las Vegas with my friend, Dave Garcia. Dave is a pit boss on the graveyard shift at the Belagio Hotel where they made the modern day Ocean’s buddy movies. Dave is also a 52-year-old chronic lymphocytic leukemia survivor. He reached out to me online and we have been friends since soon after his diagnosis in 2002. Dave is a father of two young kids. He dreams of seeing them grow up. But, understandably, he worries. Some days more than others. Today was his day to see his oncologist and get the latest blood test...

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This past weekend Oscar-nominated Hollywood and Broadway actress Jill Clayburgh died at age 66. The cause was chronic lymphocytic leukemia (CLL), which she had been fighting, privately, for 21 years. As you may recall, I, too, have CLL and I was diagnosed at the same age, 45. For me, I am 16 and a half years into that “battle” although, fortunately, I have been feeling very good in the ten years since I received treatment as part of a breakthrough clinical trial. While I have no symptoms and take no medicine I do not consider myself cured. So when someone...

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As Gale Fisher approached her late 60’s in Northern California she remained an active woman who loved to play golf and walk. But pain in her right calf  made walking very far difficult. And it was getting worse. Gale eventually saw her doctor and had an x-ray of her spine. One eminent doctor thought her pain was caused by stenosis, narrowing of her spine. He suggested fusion surgery might be needed. Gale knew back surgery all too often does not relieve a patient’s pain so she opted for a more conservative approach – injections. She also tried physical therapy. Neither...

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Page last updated on April 25, 2019