Book Signing Border’s Books in South Portland, Maine

Border’s Books in South Portland, Maine is hosting a Festival of Authors for Maine Author’s Publishing writers this weekend (July 15-17). Stop by and meet Maine writers who have published wonderful books of fiction, non-fiction and poetry. It is well worth some time. I will be there on Sunday at 2 PM and would love to chat about the book.

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Coping With Family Crisis

A Childhood Cancer Diagnosis

None of us are prepared for the worst. Nature’s destruction of people’s lives has been prominent in the news recently. One minute a home and community is there and then it’s gone. If the people in that situation have only lost a physical structure and not their lives, they feel fortunate. They may grieve for the loss of what they had, but know that the “things” in life are replaceable.

A diagnosis of childhood cancer isn’t the same as a flood, tornado or earth quake, but it still leaves the family sitting in the ruins of their life, stunned by the suddenness of the loss of all normality. Unfortunately what they face next isn’t the rebuilding of a physical structure, but the struggle to maintain any structure in daily life. Familiar landmarks are gone. Shock and grief are present, but the demands of treatment don’t allow any processing of the emotions.

To cope with this requires support from many sources. Families often don’t even know what to ask for while community members want to help, but often don’t know what to do. Food is what most people think of and that’s a wonderful thought until someone leaves a casserole on the front porch that the family doesn’t know about. They come home to something spoiled and while feeling grateful for the thought, are sad for the waste.

Remembering our own treatment experience, I have compiled a list of what helped us. This fall I plan to offer a presentation of Casseroles Aren’t Enough at book signings.

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Transparency In Medicine

Improving Care Through Knowledge and Patient Participation

Recently at a provider’s meeting of CORE Physician’s Services (www.corephysicians.org) at Exeter Hospital, one of the main topics was transparency in medicine. In the past, physicians ran individual businesses and the only way most people could learn about the skills, caring and quality of medical care provided was through word of mouth or if something went terribly wrong. Most physicians were selected by patients for the location of the office or a connection with the local hospital.
That has all changed with the more group practices connected with hospitals and changes in technology with online sources of information. Now health care reform requires all providers to meet standards of care for the treatment of specific diseases. With the increasing use of Electronic Medical Records, each patient visit provides a complete record of the quality of care given.
CORE subscribes to this high standard of care and soon that data will be made available for consumers to review. This will in time improve patient services as consumers come to own their care.
In Loving Hannah: Childhood Cancer Treatment from the Other Side of the Bed, the author experienced medical treatment from the consumer side during Hannah’s fight to survive AML. The medical care received at Maine Medical Center and from Maine Children’s Cancer Program was excellent. There were, however, some providers who provided less than stellar care. In writing the book, none of those were listed by name since the aim of the book wasn’t an exposé, but a story of hope and survival. Had there been any of the current mechanisms for evaluating care, I might have participated in an evaluation.
As we health care providers face the future with online report cards on the care we give, we will need to use not only our medical expertise, but our communication skills to educate and include the patient and his/her family in care decisions. The quality of care does make a difference in patient outcomes.

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Book Feedback

Carol,
I finished the book in two sittings. The night of the book group I read half and it stuck with me all week and then last night I read the other half, both times completely THERE. I found myself feeling that feeling when I’m reading an author who knows what they’re doing… completely trusted that I was being taken along on a journey, in this case, a very difficult one but one that I knew would lead me to greater understanding.

I think this book should be read by everyone. Above all, it is a story of love and family and of will and how these intertwined. It informs us of the loss of control over life for all of you, the fear that flutters there in your gut, the despair that accompanies the setbacks that you kept kicking back into a corner, the strength you pulled from Hannah and she from you and her Dad and sister, and the wonder of Hannah—that she faced all this with such grace and fortitude!!! It really is a magnificent story!!!! The ladybug ovary infection: all I can say is that it added an absurdity to reality that mimicked the larger absurd reality of facing the death of your healthy, exuberant child.

And for medical people, who will feel like they have slipped into your shoes from the same room they live in, there is a wealth of understanding to be gained from reading this!

And for a family that is going through this: it gives words to the whole gamut of thoughts and feelings one experiences and, if I was going through what you were going through, I would want this in my pocket. It’s a roadmap of what is needed: to consider the importance of all my actions in the healing process; to not hide from the inevitable negative thoughts but face them down and thus find greater understanding through them; to know that one will largely lose oneself in this process but, ironically come to know oneself AND LOVED ONES through the hardships; the importance of taking small pleasures that keep the well from drying up. And to know that going through this process, regardless of outcome, magnifies what is important in life.

It is an enormous accomplishment!!!!
Margaret Murray, PhD.

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Memorial Day

As I watched the coverage of Memorial Day events yesterday, I thought about all the families for whom this is a painful holiday. For them, the day represents memories of a loss so deep, it can never be erased.
While I know that the origin of the day is from the Civil War, it had in the past been expanded to include everyone. When I was growing up, we called this Decoration Day. We went to the cemetery and placed flowers on the graves of the family members we had lost and remembered all the things about them that were special.
I thought about the families we knew when Hannah was in treatment whose children had lost their battle with cancer. For them this day and every day is an ongoing reminder of their grief. If you know a family who has suffered this loss, give them your support, prayers and a special “we are thinking of you” message.

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Memories of Diagnosis and Treatment

As the anniversary of Hannah’s diagnosis and beginning of treatment for Acute Myeloid Leukemia looms, the intensity of the memories of that time lessens, but the fears aren’t completely gone.

Driving to Scarborough yesterday for her annual check up, I thought back to all the trips, we made during treatment and in the months after. Some of them were made feelings of pure terror and others with the boredom of 60 miles driven too many times.

Hannah is now a healthy college student who lives her live to the fullest. She sees the time she spent in treatment as something that happened when she was a child and now she has moved on. For her the blood work, echocardiogram and exam are a minor inconvenience to be tolerated.

For me, I can still feel the fear of relapse deep in my being, despite it being very unlikely after eight years. Perhaps my fear is a talisman against bad luck. If so I can accept it as a tradeoff.

The publication of Loving Hannah has completed a portion of my recovery. If this book helps others who are struggling with their own challenges of childhood cancer treatment, perhaps I can catch up to where my daughter is.

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Books Available at Local Book Stores

Signed copies of Loving Hannah are available for purchase at River Run Books in Portsmouth and Water Street Book Store in Exeter. Please visit these local independent book stores.

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