By Katie Fanuko
In her mid twenties, author Kairol Rosenthal was a choreographer living in San Francisco, working multiple jobs to make ends meet, and just trying her hardest to navigate the point in life that lies between finishing up school and settling down. But when she was 27, a thyroid-cancer diagnosis completely turned her life upside down. “My creative life and my creative work was just always the most important to me,” Rosenthal says. “When I was diagnosed it was quite startling…I realized that this isn’t the most important thing in the world. Art was no longer my religion.”
Rosenthal’s diagnosis eventually prompted her to travel the country, interview other young adults dealing with cancer, and chronicle their experiences in “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.” The end result is one of the most honest and unapologetic looks at what it really means to steer through the healthcare system with “bottom of the barrel” insurance coverage, to maintain meaningful relationships while grappling with an illness and to have plans for the future hinge on test results.
Though Rosenthal’s project was initially meant to culminate in a dance performance, after doing her initial interviews and seeing how candidly her subjects expressed themselves, she soon recognized that a book was in the works. “I realized that there are very few books out there—well, there are no books out there—that talk about the young-adult cancer experience in the culture of having young-adult cancer,” she says. “I realized that in interviewing people, I could provoke them to talk about parts of their experience that I hadn’t heard people talking about in support groups. People were saying things to me that they hadn’t told anybody else.”
One of the book’s starkest points looks at how many of those interviewed were diagnosed at later stages in their illness as a result of misdiagnosis or inadequate insurance coverage. Rosenthal mentioned that when she was first diagnosed, she had to deal with doctors telling her that she had everything from allergies to swollen glands. When she received a botched biopsy, it took six months to receive a second one because the first one’s results came back benign. “It was definitely cancer,” she says. “I had thirty three lymph nodes removed on my first surgery, nineteen of them were positive. Thank god thyroid cancer is very slow growing.” One of the women who Rosenthal interviewed, Mary Ann, spent two years being told she was anorexic or a hypochondriac before she was finally diagnosed with Hodgkin’s Lymphoma, which is fully treatable if caught early. She had a tumor the size of a football.
In listening to others share their personal stories in dealing with insurance companies’ bureaucratic red tape and apathetic healthcare professionals, Rosenthal could see how detrimental it is for young adults to find the resources necessary to be able to make informed personal decisions on everything from finding adequate healthcare coverage to pain management to fertility options. As a result, at the end of each chapter she has included tips and comprehensive lists of organizations and Web sites that deal with specific issues. “Before writing this book I had focused on my own cancer, my own personal medical history and my own personal struggle in my life,” Rosenthal says. “But when I started doing the research…I realized that this is not just a medical experience and it’s not just a personal experience, but it’s also a cultural experience. I felt that in writing this book, it was really important to weave that in and out of the book so that people got that this isn’t just a personal experience, this is a real movement to be created here.”
Another aspect that Rosenthal explores in her interviews is the ways in which her subjects coped with their illness. A number of them chose to forgo support groups in lieu of a more personal way of dealing. “I think that there were some people who did go to support groups and got meaning out of that, but not everybody is a support-group person,” she says. “I think that’s what we automatically assume, whenever somebody has a disease…but I think that a lot of people are not interested in connecting with other people with their disease and that’s fine, but we just don’t hear about that.”
Rosenthal also handles the prospect of striking a balance between appreciating the moment and making plans for the future, knowing fully well that these goals could be contingent on pending test results. “There’s a disconnect between going out in the world and hoping to live your dreams and then all of the other issues that you are dealing with that are so challenging,” she says. “Something that we don’t talk enough about in the cancer community is how to practically arrange your life when you are done with treatment.”
When Rosenthal was in her early thirties, her doctors told her that she would never be completely cancer free. “I’ve never had a zero on my cancer markers on my blood tests,” she says. “There have always been small tumors, it’s just that they got to the size where they could be detectable.” Now that she is married (she lives in Chicago these days), Rosenthal has noticed the difference between her current experience and when she was first diagnosed at 27. “This time around, I did not have to spend my time on the phone arguing with insurance companies,” she says. “I’m living with my husband so I am living with the support that comes along with that.” She has also noticed that the introspective influence of Sheila, another one of the women who was interviewed, has rubbed off on her as well. “I started becoming more private about my own cancer and that was a huge shift for me…and it feels right to me at this point in my life.”