When Cara Novy-Bennewitz was diagnosed with breast cancer in 2008, she was stunned, scared and, perhaps most of all, uninformed. Now cancer free, she has written a book to provide a single source, filled with all of the information that she wished she had when she was battling the disease.
Published in April, Diagnosis: Breast Cancer – The Best Action Plan for Navigating Your Journey aims to help patients and family members ask the right questions, seek out the appropriate resources, improve their quality of life and deal with the emotional toll that accompanies a breast cancer diagnosis. The Evanston-raised Wilmette resident (who currently teaches physical education at Old Orchard Junior High in Skokie) will be speaking at Winnetka’s The Book Stall, 811 Elm St., at noon on Saturday, Oct. 20.
Patch spoke with her recently to learn more about her book, her experience and Saturday’s event.
Patch: Why did you decide to write this book?
Novy-Bennewitz: When I was initially diagnosed with breast cancer and I was at my surgeon’s office, they were giving me so much information and I was sitting there like a deer in headlights trying to process it all. At the end of my visit, the doctor asked, “Do you have any questions?” And I looked at my husband, like, “Is she crazy? Of course, I have a hundred questions.” After we left with the doctor, I met with her nurse, and her nurse handed me a book that had some information in it. And it also had some questions to ask the surgeon. So, I remember saying to my husband, “This is a little bit backwards. We should have been given some of this information beforehand.”
Throughout my whole process, I kept thinking, “There has to be a better way for someone to learn this information, to gather this information to help keep yourself organized”. So, as I went from appointment to appointment, I kept all of that in the back of my head, but I was busy going through treatment. It was about year after I was through with treatments, and was sort of going through everything and trying to process what had just happened to me, I thought to myself, “There is someone new being diagnosed today, and they’re trying to figure it out.” Now that I had been through it and I had a system that helped me through it, I decided I was going to try to organize it in such a way and help the next person who was going through it.”
How did you find out you had breast cancer?
I do regular self breast exams, but I was putting on a shirt one day and I felt a lump in my breast. I wasn’t crazy alarmed, but I immediately called the doctor… When I went to get it checked out, they said, “Well, we think you need a biopsy.” So two weeks went by, and I got a biopsy scheduled, and two days after I got the biopsy, I got the call from my doctor telling me it was breast cancer.
What went through your head at that point?
I got the call at night, I was home alone, I was sitting at the kitchen table and it was absolute disbelief. My career is health, wellness and fitness. I don’t drink. I don’t smoke. I exercise regularly. I couldn’t figure out how it had happened. I was in a state of shock. To shocked to even cry… Then, I sort of say I switched gears. It was kind of like, okay, this is happening. Now what? What’s my next step? What’s my next plan? Let’s tackle this and go forward.
What kind of questions does the book answer and pose? Is it mostly on the medical and physical side of battling cancer? Or does it also talk about how handle changes in personal relationships or your work environment, as well?
There is so much that goes along with the diagnosis aside from just getting your treatments. Because there are questions of: how do you manage your personal relationships? Who do you tell? How do you handle work? What if you don’t have insurance? What if there is a legal issue? What if you don’t have financial resources to take care of it? So, although I was very fortunate in my journey to have access to great treatment, I had good insurance and legally there were no problems, there are many women out there who face those issues. So I wanted my book to address all of those issues, because it’s not about my story, it’s about how any person who gets diagnosed with breast cancer can navigate the process.
Was writing the book a learning experience? Or did you draw mostly on your own experiences?
There are over 15 different types of cancer and mine was just one type. So if the book were just drawing on myself, that really wouldn’t be helpful to the next person out there. In my research, I connected with hundreds of different survivors and doctors in the various parts of the country to get their opinion. I read so many research books, in terms of what was the latest and greatest. And I made sure my treatment team actually took a look at their respective chapter. My oncologist looked at the medical oncology chapter. My radiation oncologist looked at the radiation chapter. I wanted to make sure I was providing the most accurate and up-to-date information. And each survivor gave a little bit of personal experience that someone who was reading this book might be able to relate to. But it really is about how does someone go through the process versus this is [this person’s] story.
How can you write about something like maintaining personal relationships in a scientific manner? Was that difficult?
It can’t be just cut and dry. There are things like how do you tell other people you have cancer? All of the information that is included in this book, I’m not inventing it. All I’ve done is consolidate it from the top sources out there and put it into one resource for people. So I went to the experts on how do you tell your family, how do you tell your spouse, here are the tips you can do. It is a fine line, figuring out that balance emotionally and physically. So what’s given is guidelines to plant the seed of how to do it. And then I guide them toward the national organizations to help them through it.
What feedback have you gotten from cancer patients who have read this book?
I have to say the feedback has been tremendous. I have heard from people who have said, “Thank you. Even just the one question that I didn’t think to ask that was included in there. That helped.” I heard from another local patient who lives in Wilmette, who let me know that her husband was constantly reading the book. We forget about that. That it is not just happening to the patient. That it is happening to families. And it isn’t always the patient that is trying to find out all of the information. Sometimes it ‘s their caregiver. So it is trying to make it an easier process for them as well… We got 30 survivors together [last week] and some of them saw the book for the first time. A big portion of patients who have already gone through the process were like, “Oh my god. Why didn’t I have that book? And I’m still going through it, so can I get a copy and start filling in my information from here.”
What do you think is the biggest surprise people would have from reading your book? Or what is the biggest misconception that your book helps shoot down?
Before getting diagnosed with cancer, I had an idea of what I thought breast cancer was, and I had an idea of what I thought the treatments might be. I was right on some accounts but completely unprepared for the emotional toll the diagnosis would take. But having a system in play helped eliminate so much of the unnecessary stress and fear. And research actually tells us that people who become active participants in their treatment have better treatment outcomes.
What can people expect at Saturday’s event at the Winnetka Book Stall?
They will hear not only from me, but from other survivors, how important this type of a resource is. What I’m really hoping people will do is help pay it forward for the next person who has breast cancer. I’m hoping people will purchase the book. It’s not the type of book you are going to buy for a good summer read. But a person who is being diagnosed today could certainly use it. I’m hoping people will come out and help a patient in their community today by gifting this book. This is not about selling book. This is about helping patients. I just want to let people know that this is resource that is available to them if, god forbid, they need it.
Novy-Bennewitz also has a website called workingoutcancer.com dedicated to provididing information on how to prevent, treat and move beyond cancer through exercise. She will also be have a booth at Sunday’s Making Strides Against Breast Cancer Walk, which will take place this Sunday at Old Orchard Mall in Skokie.