Meet the Author
My name is Barbara Jaffe. I am a counselor and advocate for newly diagnosed adult cancer patients and the people who love them. I worked for over 30 years analyzing cancer research data and developing information materials and databases used by cancer researchers, cancer doctors, and cancer patients. I was one of a six-member team of National Cancer Institute (NCI) employees and consultants charged with developing a database called “PDQ.” Today, it is a well-respected “authority” website for information on all types of cancer diseases and their treatments. My responsibility was to collect and analyze the incoming results of all clinical trial studies funded by the NCI. I loved my job, because it was a wonderful way to stay current on all the newest and most promising cancer treatments for many different specific cancer diseases.
Acquaintances, knowing my work background, often called to tell me about a family member or friend, (or about themselves) when they had just been given the devastating news that they had cancer. Would I help them find out what they should do next? I met with families, went with them to doctor’s appointments, simplified what they were hearing, and helped them choose and embark on treatment. It made me aware of how appallingly little practical information these families were getting from their doctors — information they were desperate to get, in the first weeks and months after they received the news, and at a time when they were at their least capable of gathering and assimilating what they needed to know.
Over the years, more and more friends, or friends of friends, called me for help. Through only word-of-mouth, the demand for my volunteer advocacy services became overwhelming with a full-time work schedule and raising three kids. I began writing down notes and suggestions for people to share with their families and friends. First known only as “Barbara’s Book,” it was distributed about two decades ago through a pilot program to new cancer patients of Georgetown University’s Vince Lombardi Cancer Center. It was also critiqued by the hospital’s oncologists and by oncology nurses, nurse navigators, and clinical psychologists. Barbara’s Book was used by an ever-expanding circle of newly diagnosed patients and their families. Over 150 patients and their primary caregivers from cancer hospitals in the Washington, D.C. area responded to my request for feedback, and those patients have given me suggestions for revisions which I incorporated into the first edition of My Notebook. I have continued to add users’ recommendations. This is the second edition of My Notebook.
Since retirement, I have also conducted workshops and seminars for health professionals and newly diagnosed cancer patients and their support persons. I remain wholly committed to working with cancer care professionals and newly diagnosed cancer patients and their loved ones to ensure that those families living with cancer know about and have access to the combined non-clinical and clinical support services to help them as they face their personal cancer journey.