Thanks to all who took the time to “like” the My Cancer Store wall. Next, I wondered if I could ask our long-lived myeloma survivors to help me with a project I’m working on. Let me explain.
A good friend of mine, author Dave Visel, is working on an ambitious myeloma related project. Dave wrote a practical guide for cancer survivors called Living with Cancer in 2006. Dave called and interviewed me three years ago for his latest book, The Diagnosis Is Myeloma. Now What?
Dave was co-writing the book with endocrinologist and multiple myeloma patient, Dr. Jim Tamkin. I never had the opportunity to speak with Dr. Tamkin. He died a few years back after living with bone cancer for eleven years.
Before he died, Dave and Jim started a foundation called the TBA Foundation. “TBA” stands for “their best advice.” You see, this project became bigger than just a book. TBA is on it’s way to becoming a powerful force in the myeloma community. Their goal: to help educate and empower myeloma patients and caregivers.
The Diagnosis Is Myeloma. Now What? is the cornerstone of the TBA’s mission. Designed to be the definitive handbook for newly diagnosed myeloma patients, the book will soon be published by Writer’s House in New York.
Dr. Tamkin and Dave have done their homework. I have spoken with Dave and his capable assistant, Anita Chambers, dozens of times. This fall, Dave took the time to shadow me and listen to me speak to several myeloma support groups in Southern California.
Although Dave is not a myeloma patient himself, he is the caregiver for his wife, Karen, a lymphoma survivor. Dave is dedicated to our cause. Like me, Dave believes it is important for myeloma patients and caregivers to educate themselves so that they can form effective health care teams. And like me, Dave feels strongly that our books need to be available to those who don’t use computers regularly. That’s one reason the TBA Foundation was formed. To help pay to place a book in every public library in America. That’s 60,000 books!
Over one hundred myeloma patients, caregivers and experts have contributed to the book so far, including prominent names like Dr. Ken Anderson and Dr. Robert Kyle.
And I’m pleased to announce that Dave thinks enough of my voice to enlist my help as well. I will be writing the final chapter of the book–and incredible honor.
I shared with Dave how important I felt it is to leave his newly diagnosed patient readers feeling energized and hopeful. This is why I need your help. I would like to feature the voices of a number of long-lived myeloma survivors in the last chapter.
It’s an arbitrary number, but I would like any of you that have survived eight years or longer to share your answers to the following questions:
1) What do you wish you knew when you were first diagnosed with multiple myeloma
2) Are there any thoughts or tips you could share with your newly diagnosed brothers and sisters?
Your response doesn’t need to be long. As a matter of fact, short is better! Simply email me: firstname.lastname@example.org. Please include your full name, where you live and the year you were diagnosed.
One more thing. Here’s something else that Dave and I have in common. We both feel it is vitally important to try and reach more myeloma patients and caregivers of color. So if you are Hispanic or African American, could you please let me know that, too?
I have read the transcript. The book is very good! It is direct and comprehensive. Once we add this last affirming chapter, the book will feature just about anything and everything new myeloma patients, caregivers and family members need to know.
Here is the link to TBA’s website: http://tbafoundation.org/index.html
Thanks in advance for your help!
Feel good and keep smiling! Pat