Dani

This is a follow-up interview to Monday’s book review of It’s Good to Know a Miracle: Dani’s Story: One Family’s Struggle with Leukemia.  The authors, Jay and Sue Shotel, offer additional insight.

Q. What made you decide to write this book?
We believe we have a story to tell that will be of interest to a great many people. A story of hope, faith, strength and strong work…and best of all a story with a happy ending
Support for others going through a similar experience

Q. As parents did you find it difficult to write this book?
Some days were harder than others … we had to relive some pretty difficult days but we had a goal that kept us focused and that was to help others who might be going through a similar experience by providing both knowledge and support to them in their struggle.
There were some cathartic days and some exhaustive days and although there is never really closure in an experience like this it probably does bring us closer.

Q. Do each of you have a single most important message that you hope the reader will get from your book?
I believe that each of us has something special that we hope the reader gains as a result of reading this book…but we also believes that it depends on the reader…

For the cancer patient and their family….vigilance and hope
For the friend or relative of the cancer patient…..support
For the casual reader…it is a story of hope and faith and love and the power of those things
For the invincible young adult…-no one is invincible

Q. Is there something in this book that you consider to be particularly powerful or moving?
Dani’s journal entries are the toughest for us to read… and although as parents you realize what a life changing event this is there are some things that weren’t shared at the time they were written down in Dani’s journal.  It reinforces the notion that even with open lines of communication there are some things that one has to be ready to be share.

Q. Tell if you can…about the isolation the patient feels while going through this process
Dani talks about the alternative universe of the cancer patient and from our perspective, it affects the primary caregiver as well although certainly not to the same degree.  Jay was able to go in and out of that universe but the primary caregiver really can’t.  My son was the link to the other world along with strangely enough the television (American Idol) (The view) etc. and it is critical to maintain that contact with the outside world….to know it is there…and that hopefully, no matter how flawed, we can return from the alternative universe of the Cancer patient to that world.

Q. You seem to be a strong believer of patients (and families) being their own advocates.  What do you mean by that?
Our parent’s generation believed that you never questioned a doctor.  It was a generational thing of not questioning the doctor…Suzie’s  insistence on taking notes and asking questions did not make her parents happy but we believe it was critical to the decisions that had to be made.
… by asking questions when we didn’t understand
By having Doctors drawing pictures in our notebooks and thanking them and appreciating the explanations we received made the interactions much more positive and meaningful
The most well meaning and best trained medical personnel are human and can make mistakes

Q. Do you have an opinion about the relative importance of attitude in this fight?
It may be the strongest single ally in the fight…obviously in combination with appropriate treatment

Q. What do you think friends and relatives can do when someone is diagnosed with Leukemia?
Be there …and find out what needs to be done…some things the family can and must do but there is always something else and it is always important no matter how insignificant it seems at the time
Support can take many forms.
There are still many false beliefs about Leukemia.  Some people still believe it is contagious.  Some people believe that patients need to be isolated.  Some people believe it is a death sentence. This is no longer true.  Certainly a person’s immune system is damaged, especially after receiving chemotherapy but that doesn’t mean you can’t visit someone or support them by phone, cards, letters etc. or even visit them, assuming of course that you are not sick yourself.

Q. Tell us about Dani today? How’s she doing?
Great…Had her fifth birthday post transplant…everything looks great…her and her husband have been approved for adoption…she is back teaching preschool kids with disabilities and loves it.  Life is Good!

Order this book from Amazon through the link below:

It’s Good to Know a Miracle: Dani’s Story: One Family’s Struggle with Leukemia

Last month I was contacted by a representative from the website WOW – Women On Writing ( WOW! Women On Writing Issue 40: The Fiction Writer’s Toolkit.)  She wrote to inquire if I was interested in interviewing the author of a new book on breast cancer by Diana Raab.  Before she turned to writing and teaching writing, Diana was a nurse.  Her passion has always been journaling.  Her professional focus has been to champion the healing attributes of writing.  Healing With Words: A Writer’s Cancer Journey is the story of her successful battle with breast cancer in 2001 and her diagnosis, five years later, with mutiple myeloma.

Today you can read my interview with Diana.  Wednesday will feature an essay by her entitled “How Writing Heals”.  On Friday I will publish my own review of her book.  In the future I will try to incorporate more interviews with persons transformed by cancer.

Having been a nurse for over 20 years myself, I know that the experience of nursing has caused my own life to intersect at critical moments in the lives of my patients.  I was wondering how your own background as a healer and as witness to human courage and suffering informed your experience as a cancer patient?

I could probably write an entire article on this subject, but the most important thing I learned was to take one day at a time and to live in the moment. I also learned about the mind-body connection and the importance of keeping a positive attitude.

Perhaps the most unique aspect of your memoir was your invitation to readers to recount their own illness experiences on paper.  How did you formulate the idea for reader interaction and what kind of feedback have you received?

As a journaling instructor and nurse, it was simply intuitive for me to make this a self-help memoir. I have received very favorable feedback in regards to the journaling prompts at the end of each chapter as well as the appendices which offer kick-start ideas on journaling.

It was perhaps inevitable in this internet era of personal blogs that cancer (as well as victims of other illnesses) survivors would begin to share opening with the world the tale of their ordeal and reflections on how it has affected their life.  My own blog, Being Cancer Network has catalogued almost 1000 personal cancer blogs.  What observations might you offer regarding this phenomenon, both from the viewpoint of a fellow cancer traveler and of a proponent of the idea of journaling?

Perhaps with cancer more than with other chronic illnesses, the experience is frequently transformative.  How are you a different person today from having had two primary cancers in your lifetime?

Being diagnosed with cancer is a riveting event. It makes you realize not only the fragility of life but the value of it. After receiving a cancer diagnosis, you tend to view life differently. One thing I realized is that in order to maintain my health it was necessary to remove all toxic persons from my life. I only wanted to surround myself with those who make me feel good about myself and those who keep my spirits up. As much as possible, I have removed myself from those who bring me down.
As I said in the last chapter of my book, “There is no doubt that having been diagnosed with two cancers in eight years has cast a new light on my life. My goal is not to let these health issues control how I live, but rather to allow them to add to it. I want to continue being productive and making my loved ones happy and proud. This is a choice that I promise to live up to.”

You have had the benefit of graduate education related to writing.  My own experience in reading the accounts of hundreds of cancer bloggers shows that people from all walks of life and people without the benefit of formal training can often write with extraordinary eloquent and heartfelt candor.  In that context how do you view the process of writing?  and how do you mentor others who might think that they lack the necessary skill to journal?

Writing is a passion like any other passion. When you are passionate about something you are typically good at it. What I tell my students is not to write what sells, but to write what you are passionate about.

I have been writing since the age of ten when my mother gave me my first journal to help me cope with the suicide of my beloved grandmother. Writing has helped me heal through difficult times. The fact that I completed an MFA in Writing was only icing on the cake and a means to make me a stronger writer, but the passion had been there for a long time. Passion cannot be taught nor acquired, I believe you either have a passion for writing and reading or you do not. Journaling is another story. Journaling is typically not for publication, it is for personal reasons. Anyone can journal. Grammar and spelling don’t matter, nor does eloquent writing style. In either case, the more you write and read and pay attention to what you write and read,  the better writer you will become. An analogy would be that just because you enjoy playing basketball, does not necessarily mean that you will be in the NBA.

For those who have difficulty starting to journaling, I offer journaling prompts, some of which are mentioned in Healing With Words.