An Interview with Diane, Joy, and Monica
Tell how each of you became involved with the topic of cancer and how the idea for the book came to be.
Diane: Diagnosed with an aggressive form of breast cancer in July 1995, I was only 36 years old. Amidst the whirlwind of doctors, surgery, chemotherapy, stem cell transplant, radiation, and family, I found one of most distressing parts of the whole experience was how people had difficulty communicating with me. They avoided me, afraid to say the “wrong” thing. I noticed friends and acquaintances walk to the other side of the street when they saw me coming out of fear of saying or doing the wrong thing. And I searched for the right things to do and say to make all around me comfortable and at ease.
I needed outside guidance. I searched bookstores and the Internet, but I couldn’t find what I wanted. I told myself that when I made it through all of this, I was going to write a book to assist cancer patients, their loved ones, friends, co-workers, children, and spouses. In 1997, I gained the strength to look back at my notes and started to work on the book. I recognized I needed the assistance of professionals and turned to Dr. Joy Erlichman Miller. Joy thought that to make this book reach its full potential, we needed to involve yet another incredible author, Monica Vest Wheeler. I wholeheartedly agreed.
The three of us dedicated this book to Robin Unes.
Joy: Two of my grandparents died from cancer, and a few years ago, I assisted Kathleen Kaufman and her family as each dealt with the emotional aspects of her terminal cancer. In September, my father was diagnosed with prostate cancer and has begun his treatment regime. Diane had talked to me years ago about writing a book that focuses on helping families of cancer survivors. We started to work on the project, but each of us became very busy with other work and the idea seemed to be put on the back burner. In early 2004, I ran into Lenny Unes, whose wife had died of cancer in May 2003. Lenny asked Diane and I to complete the book Robin had begun, which focused on the same concepts as the book we had started to create. Lenny lovingly donated all of Robin’s writings to us to utilize in our cancer book, and I solicited Monica’s assistance to co-author the book.
Monica: Cancer killed my grandfather, and I was with him only when he died—not during his battle. My mother-in-law died in 2000 of amyloidosis, sometimes noted as a variation of cancer, yet not what I really considered cancer. I guess I was naïve about the actual toll of cancer until Joy and Diane contacted me in spring 2004. That first meeting with them and Lenny Unes changed my life forever, as I learned more about Lenny’s late wife, Robin. They opened my eyes to what cancer does not only to patients, but to everyone who loves them. I was so inspired that I committed myself to it immediately.
How did you collect research for the book?
Diane: We discussed this at great length, and we were going to interview patients nationwide. After considerable thought, we realized there were so many cancer patients right here in central Illinois, we should focus on patients here. Also, we decided after talking to Lenny Unes—when he graciously donated Robin’s memoirs—that of course it made the most sense to include cancer patients’ loved ones and get their feedback.
Joy: We were very fortunate to be able to work with the Cancer Center for Healthy Living, which graciously allowed us to utilize their mailing list to send surveys to their list of survivors and loved ones. The Center was the central point of distribution and the collection spot for the surveys, which was the basis of our research. Within 60 days, we had received more than 300 responses from Peoria area cancer survivors, as well as their loved ones. The survey responses were then tallied, and the research data was compiled into the pages you now see in our book. Additionally, I researched mental health topics that would correspond and lend an emotional perspective to the book.
Monica: We spent considerable time determining our target audience. Originally, it would be written for family members and friends of patients, but during our initial discussions, the “bigger picture” emerged. I felt very strongly that we needed to hear from those same family members and friends to take note of their emotional turmoil during all this. So, we asked many of the same questions of them as we did the survivors in the two surveys, and it was fascinating to see the similarities and differences in responses. To me, that gave this whole project a true focus on what communication is all about as “both sides” spoke out about their feelings.
The book is designed as a workbook with perforated pages. Why did you decide to use that format?
Joy: We wanted the book to be something that people would use as a handbook—something that could be written in, and pages that could be copied and distributed. We wanted the book to be something that was user-friendly, and something that could be used to share with others. The perforated pages were a brainstorm of Monica. I thought it was a great idea, and we encouraged Multi-Ad to help us create their first perforated book.
Monica: Joy and I spent countless hours focusing on the look and feel of the book. All three of us wanted it to be a source of comfort and insight—simple, yet effective. As I created more of the worksheets and evaluated the book graphically, I realized I didn’t want them stuck in one perforated section. This book had to have a certain flow to work properly, and I told Diane and Joy the whole thing had to be perforated so any page could be pulled out without guilt. They thought I was crazy at first, but we soon realized this was the best approach. The off-white pages came after I was proofreading this book at 2 a.m., when the bright white about blinded me. I immediately thought of patients and loved ones who were exhausted or had been crying. They needed a softer page to read. I asked my friend Gina Edwards from the Heart of Illinois United Way for her input on the cover, something that would carry through the sticky note effect. Her design was simple, yet brilliant. Our team at Multi-Ad in Peoria worked tirelessly with us to achieve this gorgeous finished product because they believed in it, too.
From conception to print, how much time did you spend researching, compiling information, etc?
Diane: It took a considerable amount of time researching and compiling information. However, it was always a pleasure to meet with Joy and Monica. Joy had an extensive amount of background in compiling survey results, and she thought the purest form of compiling feedback would be through surveys with exact comparisons. However, the paperwork did become rather intense, and we actually had to get outside help in pulling it together. My daughter, Kathleen, as well as many others, were extremely helpful in consolidating the surveys.
Joy: Well, let’s just say that I don’t remember doing much else in the eight-month period it took to put this book together. No matter where I was, I was working on the book. In fact, I think Monica and I did 50 percent of the book between 10 p.m. and 3 a.m. because we were unable to fall asleep; this project was too important to sleep. The ideas just flowed, and we pursued each and every idea presented to us as essential for those who were touched by cancer. Monica did all of the layout and final editing, and I did the compiling of the survey results and writing all the mental health sections.
Monica: I can’t begin to calculate the number of hours because I was always thinking about it and how to make it the perfect book. It did put me behind on many other projects I had promised folks, and I may have made some of them mad, but this cancer book consumed me for all the right reasons. I had to do this book, and I was willing to sacrifice other work to do it. There were so many incredible ideas and insights we had gathered, and I wished at times the finished product could have been much bigger. In the beginning, we thought it might be a 100-page booklet, but it grew into 304 solid pages, which was practical financially. Multi-Ad finally had to yank it from me, or it wouldn’t have been printed on time.
Since it was published, you’ve attended several book signings and presentations. Tell about some of those and how they’ve been received.
Diane: We think they’ve been received well, as many people are anxious to hear about the book to see how they can help someone they love who’s been affected by cancer. Presentations have been difficult for me, however, as every time I do one, I look out into the audience and see people going through so much pain and agony—either through being a cancer patient themselves or having a close family member. I haven’t been able to get through one of these yet without crying, as I know how absolutely devastated these families feel. Sharing my story has helped others considerably, and that’s the reason I continue to do it though it’s painful for me.
Joy: We’ve had an amazing response to our book. So many people have glowing endorsements of our work and express their gratitude, telling us they’ve been looking for a book like this. Additionally, a close friend even contacted the vice president of the national distributor he works for and urged them to represent our book on a national basis. We’re following through with that and are in process of completing all the necessary items to insure we have a book presence throughout the country.
Monica: Though I “sell” the heart and soul of this book every day, I’ll never forget the unveiling June 9 because emotion saturated that room. I was overwhelmed by people’s comments and generosity. As they came through the line for us to sign books, I recognized several first names and asked, “You filled out a survey, didn’t you?” Those who had were surprised I remembered, but after spending months with these individuals on paper, I felt as if I knew them. After the party, I finally realized what Diane, Joy, and I had achieved, and I just sat and cried for the longest time, again for all the right reasons.
What piece of advice surprised you the most?
Diane: My biggest revelation was how many cancer patients faced with a serious cancer prognosis want to discuss with a loved one how to carry out their wishes in the event of their death. For someone going through cancer treatment, it means so much to be able to discuss and have documented what they want to see carried out for their family, co-workers, etc. It made me reflect on how critical it was for me to know someone was listening during the lowest point of my transplant when the doctors were very concerned and I was feeling absolutely horrific.
I knew I could talk to my good friends and my parents about my wishes for my children, family, company, and co-workers. It’s our natural tendency to cut someone off who’s talking about death and to dismiss it as fact that they shouldn’t be talking or thinking like that. My family listened very intently and promised to carry forward many initiatives I had started. I wanted so many positive things for my children to occur in their lives, and it felt very comforting to know I could discuss this without being dismissed as negative.
I realized that when anyone, for any reason, wants to talk about their wishes in the event they die: listen, listen, listen, and then promise to do whatever you can within your power to ensure their wishes are carried out.
Joy: I think I was most taken by the love, the resiliency, and the strength of our survivors. Once again, I was empowered by the powerful importance of personal connection, communication, and its significance in the survival of cancer.
Monica: More than advice, a common theme struck me about how people are afraid to ask for help or to appear weak. That’s why I wrote a selection in the book called “Please bother me!” about why it’s okay and imperative that we acknowledge when we need assistance because sometimes it truly can be a matter of life and death.
Joy, as a psychotherapist, have you worked with many patients and families during treatment and recovery? Should mental health and emotional support be included routinely in the treatment plan of all cancer patients?
Joy: I believe the emotional aspects of recovery are just as important as the physical treatment. Together, the emotional response and the physical treatment can blend to create a powerful force to combat cancer. Together, these modalities can assist the cancer survivor and their families in their process of recovery, strengthening their resiliency, enhancing their family bond, and bringing them together to survive the diagnosis. We really believe this type of support assists each survivor deal in a holistic way with all of the effects of cancer. It’s essential to remember that cancer affects your body, your mind, and your soul—and all aspects of the person must be addressed for real healing to occur.
Diane, as a young mother with a high-profile career when learning of your diagnosis, what gave you the most courage to fight for your life? As a breast cancer survivor, was sharing your story beneficial to your emotional healing?
Diane: My first thought after the doctor told me was of my children. They were only nine, 11, 14, and 15 at the time, and I was devastated to think about how having a sick mother with a deadly disease was going to affect them. I was by myself when I received the news from the doctor, and I can remember sitting in the parking lot at the Susan G. Komen Center for what seemed forever. It was a slow drive home, doing a lot of “self-talk” about the fact that I was going to be very, very positive with the children, my family, and my co-workers, and I was going to fight this with the most aggressive treatment possible. My children truly gave me the inner strength and courage to fight and survive this dreadful disease in every possible way. I can’t believe it’s been more than 10 years since my diagnosis; the crisis my family went through impacts almost everything I do on a day to day basis. It certainly changes your perspective and how you approach the priorities. I would never wish that I’d had cancer—or wish it upon anyone. However, I do know many of the changes that have affected me have been positive changes.
Monica, you’ve written on many emotional issues. Are the stories difficult to put into writing?
Monica: I had the incredible privilege to interview Diane, her four children, and one of her best friends about Diane’s bout with cancer. I say “privilege” because they opened old wounds to revisit that time when Diane nearly lost her life. It was hard to ask the tough questions and to hear the heartfelt answers after frequent long pauses. However, their courage to speak up has and will change more lives than they can ever imagine.
And I’ll never forget Ellyn. I saw her April 1 to make sure she felt comfortable with what I’d written about her. We had the most incredible conversation, and she thanked me for this book. Two weeks later, she died. I cried for days because now I had lost someone to cancer whom I had come to love.
This year, I also was writing a volume about Holocaust survivors and how the pain still lingers after six decades. Joy led me to this opportunity, too. This latter book, which I’ll release early this year, has taken me around this country and to Poland to visit the Auschwitz death camp.
Both transformed my life. I now understand at age 47 that my “calling” is writing books and stories that touch the human heart, mind, and soul. I used to be terribly shy, but now I speak to groups without hesitation, blushing, or notes. I’m never more alive than when I can connect with people verbally and/or on paper. Sometimes it’s not easy, and I’ve shed many tears over my keyboard, but I’m also inspired by the trust these individuals place in me.
What surprised you the most during the writing of this book?
Joy: The amount of support and kindness we’ve received from so many along the way. The Cancer Center for Healthy Living has been so supportive, as well as Kids Konnected. The American Cancer Society embraced the book. The Oncology and Hemotology Association of Central Illinois rushed to assist by connecting us to interviews with national cancer magazines and other cancer associations. We’ve had wonderful individuals purchase and donate books to those who couldn’t afford a book, and stores have chosen to sell our book—some without taking any profit from the sales. Panera generously came to the forefront and offered to do a “community day” and gave us a percentage of their proceeds for one day. They then sold the book in their stores for a week, followed by an author signing day. Everyone has helped us in so many amazing ways.
Monica: How many people are affected by cancer. I also was blessed to be working on this book in fall 2004 when my aunt in Indiana was diagnosed with breast cancer and had a mastectomy. Because of what I was learning while writing this book, I found the courage to stay with her that day in the hospital, even when the surgeon came in to examine her and the reality of her physical loss hit me. I discovered that just sitting there is sometimes all anyone needs, and that was such a profound and inspiring awakening.
When a person is first diagnosed with cancer, what’s the best way to help her and her family as they begin the life-changing journey?
Diane: When someone is first diagnosed, the most important thing you can do is show support through whatever means possible, depending on the situation. In our book, we outline so many ways to help. We’ve heard it’s been helpful to take a section of the book and tear it out, give it to the cancer patient, and ask them to check things off on the list where you can help.
Joy: My suggestion is to open the lines of communication between loved ones and friends. Cancer eats away the physical body, but it also has the power to eat away at the emotional aspect of a person. The best way to help is to open up, reach out, and touch the person diagnosed with cancer.
Monica: Just talk and listen. You’d be surprised at just how powerful a cure that can be. Some people are so afraid to show their emotions that they let opportunities and lives slip away. It’s sad but true that some people would rather risk their lives than tell someone “I love you” or even “I need you.”
Does the age of the patient, as well as the age of the family member, cause her to react differently to a cancer diagnosis?
Monica: As noted in the book, children have different responses at different age levels because of what they’re able to comprehend about life and death. However, I believe it’s all about relationships—not age—when you’re talking about adults. While working on this book, I learned a 40-year-old woman can be as heartbroken as a 10-year-old girl when she’s faced with losing her mom or daddy to cancer. Or the wife who’s been married 50 years can be as devastated as the new bride when she loses her husband to this vicious disease. Intellectually, adults may understand more about the realities of cancer, but when it’s someone you love, it’s the strength of that relationship that seizes control of emotions.
What kind of support should be given to the primary caregiver of the cancer patient?
Diane: I believe this is one of the most overlooked areas of cancer/illness support, as so much focus is on the person who’s ill, but the stress and emotional upheaval on the loved ones is tremendous. I witnessed this firsthand with the toll it took on my family, co-workers, and friends. My parents were especially devastated, as very few parents anticipate the potential or actual loss of a child. I felt my parents age 10 years during the many months they cared for me almost around the clock. The support they received from their friends was critical during that time. However, like me, they didn’t accept as much help as they should have, due to their pride and the uncertainty of what to do in a situation like this.
Joy: They should be given specific suggestions of what you can do to help them. Remember, they most likely won’t ask you for help; you’re going to have to reach out and just do it. That’s why we’ve included items such as 101 ways to assist someone with cancer and what you can do if you’re a friend, mother, father, or anyone who has someone in their life diagnosed with cancer. We wanted to offer aid, suggestions, and most importantly, the ideas of those who’ve been there and have survived and thrived.
Monica: The beauty of this book is how it overflows with hundreds of suggestions on what to do and say to the survivor and her family. Don’t walk away because you don’t know what to say or do. That’s why I wrote at the end about hating myself for not having the courage to talk openly to my dying mother-in-law the last time I saw her. Only because I was afraid to cry did I avoid heart-to-heart conversations about life and death. If she were here now, I’d sit with her and a dozen boxes of tissues if necessary.
Do you intend to write on other health care topics to offer suggestions for coping?
Monica: This cancer book awakened something inside me that I didn’t know existed, and I can’t thank Diane and Joy enough for giving me this opportunity. More importantly, they’ve given me their friendship and love. Joy and I realized during all those late-night e-mail sessions that our writing and thoughts were seamless, and we knew that once wouldn’t be enough. That’s why we formed BF Press and why I’ve decided to devote most of my energies to it and our mission of teaching people how to cope, communicate, and heal emotionally at the same time. We’ll expand our distribution nationally and, at the same time, support our local economy by having the printing done here in Peoria.
Joy: Monica and I have already started to work with the local Alzheimer’s Association to create the second book in our “Here’s How We Can Help You Cope and Survive” series. The Center for Prevention of Abuse is also working with us for our third book in the series on abuse, and our fourth book hopefully will be on divorce. The net proceeds from the sale of each book will be donated to local groups to assist with vital programs.
What’s the single most important element you hope people will take away from your book?
Diane: We hope people will open themselves up in times of extreme difficulty and communicate with one another lovingly—whether they’re the cancer patient, family support structure, co-worker, etc.—and not to walk to the other side of the street.
Joy: Unquestionably, it would have to be two aspects: first, the powerful force of love in our survival, and secondly, the amazing resiliency of the human spirit. The survivors and their loved ones have great wisdom to share; they repeatedly told us that you must reach out, communicate, and touch those who are suffering. It’s not as much what you do, but just that you do.
Is there anything you want our readers to know that hasn’t been asked?
Diane: Cancer can be more difficult on the family members and loved ones than the cancer patients themselves. I watched with complete sorrow how it affected family, loved ones, and co-workers—more than it did me. I was heartbroken at how it devastated them and remember trying everything possible to make them feel positive. When someone is diagnosed with cancer, reach out to her family and loved ones because they may need the support most of all.
Joy: All of the net proceeds of this book are being donated to the Cancer Center for Healthy Living, Kids Konnected, and other cancer-related programs that deal with the emotional side of cancer. Additionally, it’s possible to purchase an additional book that would be donated to those who can’t afford to purchase the book. A nameplate with the donor will be placed in the front of the book to recognize their loving kindness.
Monica: Give the book to someone you love. Neither of you will ever be the same. TPW
For more information on Cancer: Here’s how YOU can help ME cope & survive, visit www.cancerhelpbook.com.