November 12th, 2011 by AndrewSchorr in Opinion
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Remember when people in the waiting room at a doctor’s office were all reading magazines? It was quiet as each person waited for their name to be called. Even if you went to a specialist’s office, no one dared say “I’m here for _____. What brings you here to see Dr. ____?” No one “shared” even if, just maybe, they had a very similar health concern to the person next to them. Makes sense, health is a private matter, right? Well many people I know don’t feel that way. They feel the benefits of connecting with other patients far outweigh the risks.
The other day I was in Atlanta where 30 or so patients attended an educational “summit” for people with a rare form of leukemia, chronic myelogenous leukemia or CML.While the people who came wanted to be informed and hear the latest from medical experts and an oncology social worker, they also wanted to meet others facing the same diagnosis. Particularly in rare conditions like this one, many patients have never met someone else with the diagnosis – and they very much want to make that connection. They want to hear the stories of others and see if they are like their own.
I found that to be true when Read more »
*This blog post was originally published at Andrew's Blog*
February 26th, 2011 by AndrewSchorr in Better Health Network, True Stories
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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 11” buddy movie from 1960. 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 results. Would his white blood count (WBC) be in the normal range? If so, his third round of treatment was still working. If not, he might be headed to a stem cell transplant, short-term disability, and living in another city for weeks or months.
As you can imagine, Dave was on pins and needles today. He would be against more chemo because he worries about the toxic drugs killing cancer cells but weakening him in the long run. Dave admits his blood pressure goes up on these days.
Dave is not alone in his fear. For millions of cancer survivors, while each day is special, some days are anxiety producing. For me it’s when I have a strange ache or pain. I rarely tell Esther, but I worry. For almost everyone it’s on days when we are having a “checkup.” The worry is, is this the day another shoe will drop? Fortunately, that hasn’t come for me yet and I hope it never will. I am happy to say Dave just texted me. His worry today was unfounded. The WBC was normal. He was given a pass at least for a few more months. We hope forever!
At another meeting today in Las Vegas there was a discussion about information for cancer patients. Nurses ticking off all sorts of facts and admonishments to patients. The nurses feel they are doing their job of education quite well. Some patients would say maybe not so well. How come? Fear. For us it is not clinical routine. It is our lives on the line at diagnosis or at a checkup. We often don’t hear so well in those moments. Dave may not have heard so well today. Only one word counted: “Normal.” Read more »
*This blog post was originally published at Andrew's Blog*
November 10th, 2010 by AndrewSchorr in Better Health Network, Health Tips, News, Opinion, True Stories
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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 like Ms. Clayburgh dies of CLL after 21 years, I can’t help but wonder if the disease will shorten my life too, even if I feel good now. That brings up the question of what do we do with the time we have when we know we have had a serious diagnosis and the clock may be ticking for us — or not? Read more »
*This blog post was originally published at Andrew's Blog*
