By RICHARD SLOAN, PhD
Jessie has written about her perspective as the patient in an extremely stressful situation. I can add a different one: that of the husband of my seriously ill wife.
As a public person, Jessie not only has a great many friends and loved ones but also many colleagues and professional acquaintances around the country and the world. She had time to tell only a handful of people about her new diagnosis and that surgery was imminent. We discussed at length about how open she wanted to be about her condition and she decided that being completely open was “walking the walk” of a patient advocate. So I gathered a list of e-mail addresses to alert a wide network of friends and with the assistance of another friend, set up a website where I would periodically post updates on Jessie’s condition, and got a Google Voice phone number for people to leave messages for her.
Because the website was publicly accessible, I was concerned about just how much to share. Since Jessie’s major interest is in the role that people play in their health care, she has been exceptionally open about her own medical history and it is no secret that she has had multiple cancer diagnoses and a serious heart condition. Accordingly, disclosure of the nature of her stomach cancer and the surgical realities seemed in order. So I provided some details in the blog, most especially the significant surgical result: that the tumor was successfully removed and that Jessie retained about one-fourth of her stomach. The rest of the blog consisted of “color commentary,” like how many laps she had walked around the floor and whether she was bored.
