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Thursday, May 28, 2015

Cancer and Kids with Deborah Cornwall

I'm super pleased to have the chance to introduce a very special woman and author. Deborah Cornwall has devoted her life to others by focusing on the fight with cancer. During her engagement, she noticed that although information for the cancer patients was readily available, there was a hole in information for their care-takers. She took it on herself to do something about this, and among other works, is now celebrating the release of her book, Things I Wish I'd Known: Cancer and Kids.

Welcome, Deborah! It's so nice to have you.

(For those who don't know Deborah, here's her in a nutshell, but after reading the interview, I think you'll see that this woman is not so easy to sum up in a few words.)

A legislative advocate with the American Cancer Society’s Cancer Action Network, Deborah J. Cornwall is the author of Things I Wish I’d Known: Cancer and Kids andThings I Wish I’d Known: Cancer Caregivers Speak Out. Cancer and Kids focuses on what you need to know and do, and where to find resources, when faced with a cancer diagnosis in the family.

When I read more about your background and all the ways you work and have worked to help others in the fight with cancer, I was simply amazed. To say that you've been and continue to be a blessing in this area is an understatement. Your first book addressing cancer was a new concept in so far that it wasn't directed to cancer patients but rather their caretakers. And in this one, you've pin-pointed it toward the children of these caretakers (which I simply find heart-warming).  What inspired you to reach out to this particular group?

Thanks for your kind words, Tonja, as well as your thoughtful questions. I was a donor and active board member for the New England Division of the American Cancer Society for a number of years, beginning in the 1980s, and at that time I thought of it as a good organization that my parents had supported, so it was just a good thing to do. Then I was diagnosed with breast cancer, a total shock, although I now know that your risk rises as you age, and I was just at my 55th birthday. The shock is indescribable, and it changed my life by introducing me to the impact that cancer has on both patients and caregivers' ability to regain control of their lives. I was an accomplished professional, with a thriving career, a husband, and a grown daughter, and I thought I knew something about cancer. At the moment of my own diagnosis, I felt I had lost all control over my destiny, had no idea what would happen, and began to cry almost constantly for nearly two weeks. Little did I know that my own experience, with just a lumpectomy, radiation, and Tamoxifen, would turn out to be a real cancer "non-event" compared to the stories I would hear from caregivers once I started my research with caregivers nine years later.

I decided to focus my first book, Things I Wish I'd Known: Cancer Caregivers Speak Out, on caregivers because I realized that there were few resources to help them get their bearings during the process. Most available resources were memoirs by one person, describing his or her survival or caregiving experience. I felt that you'd have to read lots of books to get a feel for the range of issues you'd encounter, given the wide range of situations that cancer can pose. That led me to decide that I had to write an interview-based book that would provide an overview, like a survey course in college, to help caregivers avoid nasty surprises or challenges for which they were unprepared.

As a result, I interviewed 95 caregivers for 117 patients aged 2-92, from 19 states and 2 Canadian provinces, who were dealing with over 40 different cancers. I was stunned at how willing they were to share their most intimate life experiences with a total stranger; it turns out that most had never been asked how they had navigated their caregiving experiences, let along what they would want those following in their footsteps to know as they enter caregiving. The first book shares their stories and then extracts from them the most important lessons and guidance for caregivers. Their stories have become part of who I am, and I feel I have a responsibility to share their stories in ways that will help carry their messages to new caregivers on their behalf.

Once the first book had been released, and as I thought back on the most urgent issues that emerged from my research, I realized that a significant portion of these interviewees were confronting the urgent questions of "how do I tell the kids?" when a parent or sibling is diagnosed with cancer and we don't yet know whether they'll survive. Many were also facing the pain of  "how do I tell my child he has cancer" when the child himself is diagnosed and was all of a sudden going to be exposed to hospitals, "needle sticks" many times a day, and—for many—interruption of their normal school and social lives for long periods. Cancer caregiving is hard enough when it doesn't involve children. These stories were so compelling and poignant that I felt compelled to write a book that would help them deal with the most urgent and sensitive issues associated with cancer and kids. The focus of my second (short) book—Things I Wish I'd Known: Cancer and Kids-- is on guiding the reader to the most urgent and critical issues they'll have to confront and to the best resources available on the internet and at their local cancer centers. You could think of it as a quick reference book for use when this kind of emergency arises.

The list that you offer for different groups and organizations which people can turn to for help and assistance is impressive, and I can imagine people would find it very helpful. But despite this already growing supportive network, has your research uncovered some areas which you'd like to see more happening?

My first concern is to improve the diagnostic process for children, in particular, but also for adults. The challenge in our healthcare system is that medical specialties have become so molecular, with micro-specialization. Cancer, especially in children, may not arrive with bright neon signs saying "This is cancer—pay attention to me!" As a result, I heard too many stories of both children and adults who experienced delayed diagnoses because they were seeing busy primary care PCPs or pediatricians who didn't realize that recurrent and seemingly benign symptoms might actually be a sign that patients' health and even survival were at risk. When you hear the many stories, it seems obvious—the mid-forties man who was diagnosed with and treated for recurrent urinary tract infections (which are said to be rare in men) and ended up being diagnosed (too late) with a complex abdominal cancer that killed him, or the teen-ager who was diagnosed with a serious and rare thyroid cancer after being initially treated for a series of colds, upper respiratory infections, swollen glands, and sore throats. In many of these situations, the PCP just didn't take the time or wasn't familiar enough with the signs that the seemingly routine symptoms were masking something more serious. So . . . long story short . . . I think there's not enough cross-disciplinary perspective in the diagnostic process. I think there's a need for pediatricians and PCPs to have some training in what symptoms should short-cut the traditional channels and move someone more quickly into a specialized cancer diagnosis track of care.

In terms of support for children, there are lots of support groups for adults who are facing cancer either as caregivers or as patients, but there aren't many resources available for helping parents think through how to communicate about cancer to their children and how to figure out what support children will need. Sometimes kids don't even know themselves what they need, but those needs may emerge when they're in a situation with peers who are also experiencing cancer in the family.  Often they benefit from interacting in play, art, or talk situations with other children who will understand their wide-ranging emotions and the occasional pangs of insecurity that cancer poses for them and their loved ones. I also think it's important for major cancer centers to begin offering more activities to allow families to deal with the pressures that cancer poses for family members individually and for them as a unit whose normal patterns of interaction may be shattered by the dynamics of cancer treatment.

Third, I believe we need more general public education about the statistic that 1 in 2 men and 1 in 3 women will get cancer in their lifetimes. Sure, cancer is far more common as you get older, but the reality is that it can be far more serious in young people, which demands more vigilance. In addition, while being "cancer free" is the goal of treatment, most of us don't realize the variety of health complications that cancer survivors may experience many years after treatment ends. These can include serious cardiac and reproduction problems that can change someone's life trajectory. The point is that just because you're cancer-free doesn't mean you can be carefree for the rest of your life.

As mentioned before, this isn't the first book in the Things I Wish I'd Known series. You've written several of these, which are directed to different groups in the care-taking process. I know much of your research came from speaking with cancer patients and their families. Was this the same type of research you needed to complete this book for children, or did you find some differences in how you had to approach the subject? 

What an interesting question! The research was totally different for the two books, although I did draw on the interview base from the first book as a foundation for some of the vignettes and issues cited in the second. The first book was open-ended research. Because of HIPAA regulations about disclosure of cancer patients' identity, I couldn't expect to get referrals from medical or social work resources. I had to circulate (mostly by email chains) a "magnetic" description of what I was doing and provide contact information so people who wanted to participate would contact me. In contrast,  for the second book (dealing with children's issues), I was talking with experts in the field, tapping their professional perspectives and insights about what issues are most critical and what resources they rely on for addressing those issues. I also then enriched this information with both snippets from my earlier interviews and stories I accumulated from people I'd met or friends who themselves dealt with difficult cancer issues with children in the intervening period since the first book was released. A lot of my research for the Kids book also involved surfing the internet to find resources that professional organizations were highlighting for their own audiences, so I could share those with my readers.

Now, to some lighter questions, since life can't always be serious and joy is often the greatest cure:

Many authors were avid readers during their childhood. What were you favorite books while growing up?

I was an avid reader, but never thought I'd ever end up writing a book myself. I used to read series of mysteries that shared the same character going through a variety of exciting and unpredictable challenges. There were lots of those when I was growing up.

That's probably why my favorite genre today tends to be mysteries (like those by Stieg Larsson, Tana French, and Arnaldur Indridason). I'm not usually into historical or biographical novels, but I loved the biographies of Steve Jobs and Colin Powell, probably because they offered some fascinating perspectives on them as people that had never come through the classic press coverage. Besides offering a good story, some of the most enjoyable books for me are those that use language in an carefully shaped way that triggers visual images through the author's selection of a distinctive word or an unexpected turn in a plot.

What book are you reading right now?

I'm about to read Wolf Hall (just waiting for it to arrive). As I said above, I'm not usually a biography or history reader, but the PBS TV production of Wolf Hall got me interested in learning more. I found it challenging to fill in the blanks between settings in the series – it was like getting a sequence of snapshots that didn't have a lot of connective tissue between them, and it was challenging to keep the various players clear in relation to each other. When I read the first page of the book on Amazon's "see what's inside," I was stunned at how gripping her narration is, and I decided to go for reading about Henry and all of his wives because it would enrich what I'd previewed on PBS.

When you aren't writing, what do you like to do? 

I'm busy. I'm a golfer, although have had back issues the last year or so and haven't played much; hope to get back to it this year. It's a wonderful way to commune with nature and with yourself once you turn off your Type A achievement drivers and convince yourself that it's really a game and not a competition.

I also serve on the board of a healthcare organization, Hope Health, that focuses on helping improve the quality of life for people who are facing chronic illnesses and dementia. Among other services, they offer home house calls for the infirm and both palliative care and grief counseling for children (services that connect to my Cancer and Kids concerns).

Probably biggest activity, though, is that I'm still an active cancer advocate focusing on educating legislators on the need to increase cancer research funding. I am a speaker for ACS Relay For Life, Making Strides Against Breast Cancer, and community groups to try to generate activism on behalf of that cause. I get lots of support from local newspapers in contributing articles for public education. Most recently, I've been following the dramatic developments that are beginning to get press coverage about how cancers get their signals to grow or stop growing through the immune system and other body systems. (Who would have ever believed that scorpion venom, for instance, could prove helpful in addressing some kinds of cancers?) The research world is starting to recognize that cancer isn't about particular body parts, but about particular genetic mutations and triggers that may characterize multiple kinds of cancers. In addition, analysis of cancer registries (using what's called "big data" is helping identify patterns in what biological markers tend to appear in tumors and blood samples for different kinds of cancers and is leading to recognition of areas for research avenues that offer promise for huge impact in the future. I try to capture not just caregiving issues, but some of these hopeful developments in my website's blog (www.thingsiwishidknown.com).

Finally, I've just been appointed to a stakeholder research committee within the American Cancer Society at the national level that helps determine which young researchers' proposals should be funded; I've served on a similar committee within New England for the past two years and hope to continue there as well. This kind of volunteer role is a way to get exposed to the inside story about progress in detecting and defeating the disease and offers an opportunity to have an impact on the future course of clinical medicine to help save lives.

What was your biggest wish as a child?

Wow. I don't really remember. I guess my wish was to do well and make a difference, and my parents encouraged me to follow my passions. I'd seen my parents highly engaged in their communities, my father as a lawyer (like the old-fashioned general practitioner) and my mother as a community volunteer, mayor, and political candidate at the state level. While I never considered entering politics, I was raised with a value system that we all have the obligation to give something back in appreciation for our good fortune. My cancer activism is certainly an example of giving back in recognition of my own good fortune in turning a cancer "lemon" into lemonade that can help others.

Well, I can only hope and pray that your lemonade stays as sweet as it is. I'm sure many are glad you've stuck to this concept. Thanks again for stopping by and here's wishing you continued strength and success!

And here's a peek at Deborah's new book. Head on over to Bookworm for Kids for more information and if you're curious to see what I thought of it.

This short book was written for cancer caregivers who are responsible for helping children understand what a cancer diagnosis means for a loved one or for themselves. The cancer experience shakes most caregivers to their core. It is even more compelling and poignant when it involves children. Thousands of families each year face this shocking reality. Based on interviews with caregivers who have first-hand knowledge, this book is intended to help anyone facing a cancer diagnosis affecting a child, either as the patient or as a member of a family. It offers advice and cites resources to help discuss cancer with children of different ages, manage the impact of the disease on their daily lives, navigate treatment for kids with cancer, and deal with children's grief in the event of a death in the family.

In short and direct language, it offers guidance and resources (both references and internet links) for communicating and taking action in five areas:
  • Sharing the News about Cancer
  • Managing the Impact of a Cancer Diagnosis for Children
  • When the Child is the Cancer Patient
  • Handling the Death of a Parent or Sibling
  • Other Resources for Caregivers Concerned About Cancer and Children

If you're pressed for time and need to know what to do on these topics, you can't go wrong with this book. The references provided are comprehensive and will save you time and energy as you navigate through a challenging situation. 

For insights about the broader cancer caregiving process, see "Things I Wish I'd Known: Cancer and Kids," also by Deborah J. Cornwall.

1 comment:

  1. Wow! This is an excellent and in-depth interview. I didn't realize the statistics for cancer diagnoses were so high - that's sad and hard news.
    Thank you for writing these books, Deborah!


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