Did your cancer diagnosis change your life priorities?
Faces of Courage and Hope tells a positive story of how chronic myeloid leukemia (CML), a cancer of the white blood cells, changes lives in a series of photo stories. The recently published book depicts the inspiring journey of 16 European CML patients, including a Portuguese woman’s experience through two pregnancies. The emotional photos and insightful interviews reveal how each has faced living with the disease and the way their personal and professional lives have changed.
Photo courtesy of Jan Geissler
It is more than 13 years since Jan Geissler, one of the book’s authors, was diagnosed with CML, at the age of 28. A young man working in telecommunications and media, the diagnosis completely changed his life. “Quite often we forget to think about what cancer does to your life,” he told us. “How does it change your priorities? If you are at childbearing age you will have questions about fertility. Information on cancer often focuses on the medical side of how to manage therapies and side effects.”
Today, Geissler is the director of the European Patient Academy on Therapeutic Innovation, EUPATI, having previously set up the CML Advocates Network to share information with other CML patients and to give CML patients a voice. He came up with the idea for a book that tells CML life stories in photos after inviting fellow CML patient and professional photographer Bert Spangemacher to a CML Advocates Network meeting. “We wanted the book to really tell what a diagnosis does to your life, family and life priorities,” he explains. “We wanted to give a positive message based on what I have seen as a patient in patient advocacy for so many years: that there is also something good.”
Defying the odds
Michelly, the Portuguese CML patient portrayed in the book had been on therapy for a number of years when she found out that she was four-months pregnant – a pregnancy that totally defied all recommendation since tests had shown that the tyrosine kinase inhibitors used to treat CML damage the fetus and influence the pregnancy. “The baby had already been exposed to the drug for four months and her CML was not at a stage where she could stop therapy,” tells Geissler. “Nevertheless, together with her doctor – who is one of the most renowned CML experts in Portugal – she decided against all recommendations to bring the child to birth while still continuing with therapy.”
Her daughter is now around eight years old and in good health. “And she also has a second child,” Geissler adds. “Her second child was planned for when her CML was at a stage that she could stop therapy.”
Cancers like CML often raises the question of whether you have to give up on the idea of ever having children. Stories like Michelly’s not only give millions hope, but the knowledge gained helps others in similar situations to make better informed decisions.
How has your diagnosis changed your decisions around the course of your pregnancy?