Shedding Light On the Cancer Journey: the book

My dear and faithful readers:

As of today, over 35,000 people have read and hopefully benefited from this blog– beyond my wildest expectation when I started this project  4 years ago. Such strong support has led me to turn Shedding Light On the Cancer Journey into an E-book, which I’ve published on Amazon:

http://www.amazon.com/dp/B004T3331M

The easiest way for me to describe what this book is about is to explain what it is NOT about:

This book is NOT about how to cure your cancer. I don’t know anything about that– my husband John was not cured. Nor is it about being a cancer survivor, because John did not survive. He did, however, triumph over his disease– not by “beating it”, but by refusing to allow it to diminish his quality of life. He was not cured, but he was definitely healed.

This book is not about diet and exercise for cancer patients.

This book is not about how to become a cancer survivor. John’s physical body did not survive.

This book is not about alternative medicine for cancer patients– although it does discuss some complementary modalities that we found very helpful not only for easing the discomforts and pain of the physical body but for engendering a sense of deep peace as well.

So then, what IS this book about? Read what others who are walking down the cancer road have said about Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze:

You have created an incredibly valuable book. As a Professional Patient Advocate, I can tell you the experiences you are sharing through your first-person voice are amazingly common and your solutions are very direct and very accurate. This is information that only comes, unfortunately, from first-hand experience. Your book is like no other on the topic of any kind of cancer; you combine education with real-life emotion. This is “the bible” on colon cancer from the patient’s perspective. Your e-book serves a vital need. You are helping more people than you will ever know. Thank you. (Sheryl Kurland, Patient Advocate, Orlando Patient Advocates)

I cannot begin to tell you how helpful and meaningful your writing is. My father was just diagnosed with colon cancer stage 4 and I’m frantically searching for knowledge to help us with what lies ahead. Thank you for the priceless information (so far no one has even mentioned RFA to us or went through aspects of chemo you’ve pointed out) and the inspiration you’re so generously providing. It is such a help for people in our situation. (From the daughter of a colon cancer patient)

Your book has helped me to understand the pros and cons of the road ahead. (From Kaitlyn, a reader)

The web is packed with “inspirational” babble, “survivors” success stories and the like. I praise your effort in publishing a factual, clinical account of what your husband has been through. It helps a lot more than uplifting pats on the shoulder and gives me the chance to explore new alleys in the CRC nightmare my mother is facing. (Nuno Zimas, son of a colon cancer patient)

Perhaps you are wondering: why did this woman spend a year of her life writing down her husband’s experiences in such minute detail, when she will make no money whatsoever from the sale of her book? (see below for where any profits will go)

The answer is this: only someone who has been through the cancer experience can possibly understand the headaches and heartaches of this journey. Our doctors told us that we were the most educated and proactive patient/family team they had ever encountered– and yet, we were so often completely clueless about why our medical situation was unfolding in the way that it was. We often said to each other: if we can’t figure out what’s going on, what about all the others– those who are too sick, too weak, too tired to do their own research, unable to stand up to their doctors? What happens to them?

This book is a way of taking all of our suffering and dedicating it to the benefit of others with the intention of minimizing their suffering. Each person who purchases a copy of this book will, in turn, be supporting many others who devote their lives towards building the foundation for peace and freedom from suffering for all beings in this world (see below). $9.99 to benefit from this kind of  knowledge that can only be gained through hard experience– and to be benefiting others in return? This is  mutual support in action.

HOW CAN OUR EXPERIENCE BENEFIT YOU DIRECTLY, AS A PATIENT OR CAREGIVER TO A CANCER PATIENT? Here is just some of the information contained in this book that you will not find anywhere else:

An effective alternative to the long, drawn-out agony and uncertainty of chemotherapy when faced with liver or lung mets:

an approximately 2-hour procedure  which requires only an overnight stay in the hospital– with side effects that were, at worst, a week of flu-like symptoms. 

kill rate very similar to full surgery, effective for both liver and lung metastases.

 Detailed answers to every imaginable question about this modality, based on our first-hand experience and extensive interviews with every interventional radiologist at our hospital. My husband  was a world pioneer in RFA, in that he had 7 separate procedures– more than any other patient in the medical literature, according to our interventional radiologist.

Why  a PowerPort can make your life so much easier (IF you understand how it works and how to make the hospital hierarchy work for you) or become a source of frustration (if you don’t):

which medical personnel can access your port and where to find them

steps you should take BEFORE blood draws and CAT scans that your doctor may not know about (ours did not)

basics of good port protocol to prevent infection

A simple protocol for getting out of the hospital fast, including how to transition from  a pain pump to oral pain medication with a minimum of trauma. John printed this self-devised protocol out and discussed it with his doctors before every surgery. They were uniformly delighted to comply—never the slightest static.

Mind-altering drugs in your chemo cocktail– forewarned is forearmed

Facts about pain control that were never explained to us– these are points with which every patient/caregiver should be intimately familiar:

Trouble-shooting pain control: family members are the first line of defense

 How to recognize problems and prevent side effects before they occur    

Astonishingly effective alternative modalities

Simple in-home tools that really help to ease pain

Blood clots and IVC filters: what we learned the hard way and what every patient needs to know to avoid unnecessary complications

Changes in the patient’s mental status: warning signs and possible causes that can be reversed

Strategies for dealing with the unwanted changes that come with cancer

OTHER THAN FIRST-HAND EXPERIENCE, WHAT UNIQUE QUALIFICATIONS DO I HAVE TO WRITE ON THIS SUBJECT?

My 27 years of active hospice work with a hospice that is leading the way for contemplative care in this country have taught me how to be present with suffering. I understand very clearly that there is a time to “do” and a time to just be.

I have been mentored for 22 years in pain control basics by a very highly-skilled and experienced hospice nurse who knows much more about pain control than most doctors and actively uses her knowledge every day of her life. She also happens to be my dearest friend, which means that we talk about pain control issues as routine conversation.

Teaching how to be a compassionate presence to new hospice volunteers, nurses and social workers and new hospice volunteers for the last 10 years framed my determination to attempt the same task with my husband’s doctors and nurses.  My husband, who originally denounced this as wildly inappropriate and overreaching, was soon converted when he witnessed my somewhat astonishing success with his arrogant and distant surgeon.  Through our joint efforts, many doctors and nurses learned that opening their hearts actually led to better,  more effective medical care.  As a result of this, I have a working understanding of doctor-think.

My husband and I actually succeeded in changing three key flaws in the way medical care was delivered in our HMO in ways that made cancer treatments much less stressful for all cancer patients. My goal is to save all future patients from the time we spent and frustration that we encountered by sharing what we learned directly.

 This E-book can be read on any PC or Mac, Ipad, Ipod Touch, Blackberry or Android. Just download “Kindle for PC” or “Kindle for Mac” by hitting the button on the right side of the Amazon screen– the reader is completely free to install and takes  just a minute or two. No tech know-how at all required! And once you do that, you can take advantage of a fairly amazing bonus: Amazon is giving away free E-books every day on their website. Apparently their offering changes on a daily basis– check it out…

I will not make any monetary profit from the sale of this book. All proceeds will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world. Their constant prayers on John’s behalf and the gentle guidance of Tulku Orgyen played a vital role in John’s ultimately serene death.

You might also want to check out my new notecards, created with the same intention and the same goals: http://dharmakaleidoscope.wordpress.com/2011/07/15/dharma-kaleidoscope-notecards/

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About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
This entry was posted in cancer staging, cancer treatments, caregiver to cancer patient, chemo toxicity, coping, doctor patient communication, doctor patient relationship, end of life, hospice, hospitalization, medication issues, patient advocate, side effects of cancer, side effects of cancer treatments, Uncategorized and tagged . Bookmark the permalink.

2 Responses to Shedding Light On the Cancer Journey: the book

  1. Sheryl says:

    I will post Shedding Light on my Facebook page when it is complete, and I hope you other blog subscribers will, too. As painful as your journey as been, your guidance and wisdom having walked the path will help other patients and their family members get through theirs.

  2. Ilona says:

    How wonderful Rachael. I am looking forward to the book.

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