My Parent Has Cancer: Why Write a Book?

The following is a conversation with Marc and Maya Silver, authors of My Parent Has Cancer and It Really Sucks, the first guide for teens whose parents have cancer. Maya was 15 when her mom, Marsha, was diagnosed with triple-negative breast cancer. Marc, Maya’s dad, is an editor at National Geographic and the author of Breast Cancer Husband. His wife, Marsha, is now in good health.  

Marc and Maya, what inspired you to write this book?

Marc: I wish I could say the book came to be because I had an epiphany: Families like ours – two teens, mom diagnosed with breast cancer – need help.

But that is not the truth. In 2001, our family muddled through Marsha’s months of cancer treatment. It never occurred to any of us that our kids might need help coping.

Then, a few years later, our dear friend Anna Gottlieb, the founder and director of Gilda’s Club Seattle, called me to share some essays from the group’s annual essay contest: “It’s Always Something.” Teens are invited to write about how they’ve been “touched by cancer.” Many of them wrote about a parent’s cancer with intense feelings that defy the stereotype of the sullen, uncommunicative teen.

“This has to be your next book,” Anna said.

 She was right. But it took a bit of doing. I soon realized that I needed a co-author who had in fact faced a parent’s cancer as a teen. Our older daughter Maya is a phenomenal writer -- creative writing was her major at Oberlin, where she earned the Diane Vreul's Fiction Prize in 2008.

 

Maya: I have to admit that at first I wasn't crazy about the idea. My mom's cancer is something I never fully dealt with. Even in my early 20s, it was a topic I didn't like talking about. Pouring myself into a book project about it would not only require me to confront the experience head-on, but to live, breathe and dream about cancer as we spent months in research, interviews, writing and editing. On the flip side, I knew that there was a gap in resources for teens dealing with a parent's cancer. I understood that a book like this probably would have helped my sister and me. 

 

Marc: So we began working together to shape a proposal. We realized that the book needed to reach out to teens, but we also knew that parents would probably be the ones to buy the book. So the main narrative would be aimed at teens, but there would be a special section of advice for poor, beleaguered mom and dad.

Many publishers passed on the idea. They didn’t “get it.” Is this a health book? A young adult book? What kind of book is it?

 Maya: Our answer always was: It’s a book that is sorely needed. A study published in the journal Cancer states that nearly three million U.S. kids live with a parent who’s a cancer survivor, and about a third of the kids are teens. Yet there are very few resources for this 12-19 demographic. As we found out when we put together our proposal, teens in particular need a lot of help coping. They’re at a stage when they’re separating from the family, striking out on their own. Suddenly, mom or dad’s cancer diagnosis pulls them back to the family. The result: A teen who may be resentful, who may hate being looked at with “pity eyes” by friends at school, who has to deal with problems far more pressing than those of friends who worry about break-ups and break-outs and buying the latest video game.

 

Marc: Fortunately, our agent was a tireless advocate for the book, and the editorial staff at Sourcebooks understood why this book is an important addition to cancer literature. And so we began our year of intense work on the project, interviewing some 100 teens, parents as well, and many mental health experts. We hope the book can serve as a support group for teens who don’t have anyone to turn to. We want teens to know that what they’re feeling is probably normal. It’s normal to worry still about who’s going to drive you to the prom. It’s normal to be embarrassed by a parent who’s bald from chemotherapy. It’s normal to have a closer relationship with one parent than the other, and to secretly wish that the other parent was the one with cancer.

 Maya: We set two rules for our book: Teens, don’t feel guilty. You have your own way of coping, and you don’t have to behave like any other teen in this book.

And parents, do not use the book to make your teen talk if he or she doesn’t want to. 

 Marc: And we think Bailee Richardson, who was 12 when her mom was diagnosed with cancer, says it all when she shared this advice: “Stay strong. Don’t let it ever get the best of you.”

Maya, you are right, this is a book sorely needed.  Being a teen is hard enough; being a teen whose world is rocked by cancer, well that is a whole other ballgame.  We all know how hard it is to be a caregiver, and we certainly know how hard it is to be a patient, but we just don’t know or appreciate just how hard our own diagnosis on our teens (think communication, expression, social woes, and hormones). I often worry about the emotional side, the temporary and lasting physical tolls that are really somewhat unknown.  Thank you both for this guide and for sharing it with us.

To read more about their journey, please visit My Parent Has Cancer and it Really Sucks

Elyn

www.elynjacobs.wordpress.com

~~If you don’t know your options, you don’t have any~~

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. She is also on the peer review board of the Natural Standard Database. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Natural Healing-Natural Wellness, Integrative Oncology Essentials, and other publications and newsletters. Elyn lives in New York with her husband and two young boys.

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New To Caregiving? How Will The Doctors and Nurses Treat...You?

Today I would like to share a guest post by Rob Harris.  Rob is an accredited Human Resources professional (SPHR). He specializes in assisting corporate executives and all others with their strategic and day-to-day human resources needs; but more importantly, he is a caregiver to his wife, a two-time cancer survivor (Lymphoma, Sarcoma).  Rob tells me the experience of caring for her over the years has enriched his life beyond imagination.   So thank you Rob for sharing this most valuable advice with us! My best to you and Cindy!
After receiving shocking and/or devastating news, the human body likely goes into “fight or flight” mode. At that time, emotional confusion abounds. No, I am not talking about the patient. My reference is directed toward the newly-anointed caregiver.

Fear, anxiety, confusion and even panic are a few of the emotional reactions likely to bombard you all at once.

Face it, one day you are leading a fairly normal, routine life, and the next you are entering a world that is, in all likelihood, completely foreign to you. While you did raise your hand and voluntarily step up and state, “I will be the caregiver,” the reality is you probably had no idea what it was you were agreeing to do.

Unfortunately, most caregivers are ill-prepared for what comes next. Yes, you can anticipate that your life will change for an undetermined period of time. You will soon meet more doctors, nurses and medical staff than you had thus far in your lifetime.

Of course, it’s easy to rationalize your current state of affairs with, “That’s no big deal. I’ve been seeing my own doctors and their nurses my entire life. How much different can this be?”

If those are your beliefs, you are in for a rude psychological awakening.

When you are the patient, the medical community acknowledges your existence. However, when you are a caregiver, in the eyes of most, you become invisible and irrelevant.

Be prepared to be treated like a second-class citizen. In most cases, you will be ignored and even disrespected by your patient’s doctors and nurses. It doesn’t matter who you are, or what you may have accomplished in life. The bottom-line is that the reaction you will receive will be distressing, depressing and probably unexpected. At the very least, get ready to have your ego bruised.

Personally, I was completely caught off-guard when this occurred to me. More often than not, I was made to feel as if I was a nuisance. My immediate reaction was that my questions and opinions were not valued nor welcomed during any dialogue the doctors or nurses were having with my wife.

My efforts to become engaged in conversations were typically met with tight smiles, frowns, or a complete lack of acknowledgment that I even spoke.

I recalled a phrase my parents shared with me when I was very young, “Some adults believe that children are to be seen and not heard.” In this case, I substituted the word “caregivers” for “children” and had, in my mind, an accurate depiction of how I was being treated.

Though there are a few exceptions, most doctors and nurses focus completely on the patient. They enter your room, say or do what they have to, and move on to the next one. Trying to alter that routine, no matter how skilled you may be at communicating with others, will likely be futile.

As a result, you have two choices: either accept your fate in advance, or vent to family members, friends, a support group or possibly even another caregiver with a sympathetic ear. Hopefully, it will help reduce or remove your pent-up frustration. At best, it may help you realize you are not alone.

There is, of course, a third choice; one I do not recommend. You could confront the offending doctor(s) or nurse(s). However, human nature being what it is, the individual you challenge will likely not appreciate your comments. The one thing that you likely won’t accomplish via an argument is initiate a positive change.

While some doctors and nurses appreciate the role of the caregiver, many do not. Accept it for what it is. Listen intently to what they have to say and learn all you can from their conversations with your care recipient. Take copious notes. After all, the real goal is to get the best medical attention for your loved one…not yourself.

 Rob Harris enjoys writing, blogging, and speaking in front of audiences, but gets the most pleasure from helping caregivers, patients, and those within the medical community. Rob is extremely approachable and available, especially to fellow caregivers, patients, schools, organizations and members of the medical community. He is a regular monthly blogger on the American Cancer Society’s affiliate website, WhatNext, and posts blogs on his webpage. He guest blogs regularly on many other websites, including Leeza Gibbons’ Leeza’s Place, and has been interviewed on radio, video and in well-known publications. His first book, We’re In This Together: A Caregiver’s Story will be launched on July 14, 2012. It can be purchased in print and ebook versions through Rob’s website (http://www.robcares.com/) or through Amazon and other literary outlets. An excerpt is provided at: http://robcares.com/li1 

My sisters and I were caregivers to my mother during her battle with cancer.  I too, experienced much of what Rob describes.  However, given my nature, I could not help myself and had to speak up. I found a fourth choice; one with much downside, but thankfully worked for me.  I went over the doctors’ head, went right to the top.  The first episode was over a simple matter like the doctor would not make time to talk to me.  She said she had already explained to my mother that her cancer was back, and had no time to explain it to me. Her boss thought otherwise, and the doctor scheduled a call to me. 
Another time I stepped in and saved my mothers’ life.  This time it was over a biopsy.  I not only had to research the options myself, but then went to the top to ask why the less invasive option had not been offered to her.  The answer was shocking.  The adjunct facility was not aware of the procedure; we scheduled the biopsy at the New York facility.  Please know that this is the option of last resorts, but you may find at some point, that it must be done.  I have also had many, many positive experiences as advocate to patients; in each case, the doctor thanked me for helping to facilitate effective communications….so take heart that there are wonderful, compassionate, short-on -time doctors who truly appreciate the help an advocate can provide.  But, as Rob says, if all else fails, remember the true goal; getting the best possible care for your loved one, even if that requires much venting to a friend; just bring the wine.

 Elyn Jacobs
elyn@elynjacobs.com

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. Elyn empowers women to choose the path for treatment that best fits their own individual needs.  She is passionate about helping others move forward into a life of health and wellbeing. To learn more about Elyn’s coaching services, please visit:  http://elynjacobs.wordpress.com/.  To tune into the Survive and Live Well radio show, please visit http://www.w4cs.com/, Tuesdays at 1pm (est).