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Professional Patients

Posted 3/26/2015

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  Professional Patient is a new term for me. I just read it for the first time in this story from NPR about Dixie Josephson who was first diagnosed with ovarian cancer when she was 56; she is now 71. Clearly, no question, the excellent news is that she is alive. The less good news is that she has been treated 15 times for initial therapy and then recurrences. As you would suspect, all of this chemotherapy has caused many other problems, and she has been less than fully well for most of the past 15 years.

  Her story is one that we increasingly are watching, and it is uncharted territory for us all. Health care professionals, including oncologists, are learning along with their patients about what is possible. Clinical trials are tried, and some are terrific--many others turn out to be not so useful. Patients and their families learn over time to adapt to all kinds of changes and losses. What might have seemed unthinkable becomes manageable.

  There is another kind of professional patient, and this is what I thought of when I first saw this report. Some people make a full time job out of their cancer. Starting at diagnosis, they devote their time and energy to research and to trying all kinds of treatments to care for themselves and, hopefully, ease their experience. This can mean special diets, special exercise programs, acupuncture, oncology massage, other kinds of CAM. People who continue to work through cancer treatment are not likely to have time for all these efforts, but those without work responsibilities do sometimes choose to make this their job. Very honestly, I always have mixed feelings about these decisions. On the one hand, I surely support anyone's choices about how best to care for her/himself through and beyond treatment. On the other hand, spending all your time on cancer-related activities may be less good for your mental health than spending some of that time doing other things.

  Note the may be above. Everyone is different, and I start with the assumption that you know best what you need. Many people do find that paying special attention to exercise and getting enough sleep, for example, helps them manage treatment. They also may find that going to the movies with a friend is the best possible psychological boost. People whom I know who are living with advanced/metastatic cancer are too often forced to become professional patients like Ms. Josephson. They know that they will be on treatments of one kind or another for the rest of their lives and won't ever get much of a break from the hospital. Most of them are eager to negotiate time off/time away, and know the value of distraction.

  Here is the start and then a link to read more:

A Woman's Journey From Cancer Diagnosis To 'Professional Patient'

Dixie Josephson was 56 when she was diagnosed with metastatic ovarian cancer. She's 71 now, but the
cancer is still with her.
Josephson's story is one shared by other fortunate cancer patients. Advances in treatment mean that more
people like Josephson can live longer with their disease. Still, the five-year survival rate for metastatic
ovarian cancer is 27 percent, putting Josephson in the minority.
And the treatments that have extended her life have also taken a toll on her and her family.
"OK, ready," she says during a visit to Women and Infants Hospital in Providence, R.I. "I'm here for an
appointment. and I don't ever feel good when I come in for that. It's scary and depressing."


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