May 15, 2009 at 8:18 pm | Cancer, Other health issues, Problem Solving
- Posted by blog |
The doctors and nurses were using words I could not understand. It was September 19, 1998. I was in the emergency room of a large hospital in Falls Church, Virginia. “I’m sorry, Mr. and Mrs. Russell, but your daughter has a brain tumor.” It was the first time in my life that I fainted. When they revived me, my head was spinning, my heart was pounding and I was nauseous. How can a parent begin to comprehend that their child has cancer?
I was plunged into a universe that had always been far, far away. The mysterious vocabulary words kept coming at us. “We can try radiation up front.” “Chemotherapy doesn’t penetrate the blood-brain barrier.” “It might be a diffuse pontine brainstem glioma.” Doctors assume you know what they are talking about even though your world in that instant changed forever. I realized I had better educate myself and fast.
I’ve learned a lot in the last ten years. One of the first things I tell a newly diagnosed cancer patient is to “learn the vocabulary of your illness.” Learn to communicate effectively with your medical team and the others involved in your care. Never assume the members of your team are actually talking to each other. It is your job to make sure that nothing falls through the cracks because if you don’t do it, no one will. Take names and take notes. Try to bring along a companion to help because it is hard to concentrate when the news is complicated and difficult. Ask questions and keep asking until you get answers in words you can understand. Learn the language of your disease. As awful as they are, it’s easier when the words aren’t foreign anymore.
May 5, 2009 at 6:08 pm | Cancer, Elder Care, Health Care Reform, Integrative Care, Uncategorized
- Posted by blog |
The American Society of Clinical Oncology has announced an ambitious policy regarding cancer care disparities. It will use strategies such as increasing research into cancer disparities, bolstering enrollment of minorities in cancer clinical trials, encouraging greater diversity in the oncology workforce, educating the oncology workforce about cultural issues and seeking equal access to quality healthcare. http://www.medscape.com/viewarticle/702142_print
This comes on the heels of an alarming report that from 2010 to 2030, the total projected cancer incidence will increase by approximately 45%, from 1.6 million in 2010 to 2.3 million in 2030. Included in the projections is an expected 99% increase in cancer incidence among ethnic minorities and a 67% increase in older Americans.
These numbers are staggering! We’re all so used to talking in billions and trillions now in this new “bailout-a-day” world we live in that this statistic might escape notice. A 99% increase in cancer among minorities?? And this is projected despite steady and stunning breakthroughs in cancer diagnostics and targeted treatment?
Closing these disparities is certainly part of the job of patient advocates and navigators who can work on behalf of those who would otherwise be lost to the system.
However, there needs to also be a vigorous discussion about why so many more people will get cancer. Why do so many people fail to take care of their bodies and health? It really IS about diet and exercise. So many problems could be fixed if people cared as much about their bodies as they do about material things. There’s no way around that. And yet…. We too often fail to treasure and respect the gift of our bodies and our health. It’s only when you’ve lost something that you truly appreciate it…
