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Cancer Caregiving Journey: Living with Myeloma, a CareGivers Journey

Barbara Baroff Kavanagh, MSW, LCSW

It has been a busy few weeks for me as I ‘embark’ on another Journey- writing my book:’ Living with Myeloma, a Caregivers Journey®.

It has been a 28 year journey that has taken us to 5 countries and 3 States in the U.S. Over the years, my husband and I have had to find oncologists wherever we lived and were fortunate that they were willing to communicate and collaborate with top myeloma specialist at the Mayo and Dana Farber Cancer Institute. And, now many years later, they have generously offered to contribute their own knowledge and experience to my Book, ‘Living with Myeloma, a CareGivers Journey ®. I also will include information and resources for the cancer caregivers and families, who are such an important part of the cancer team. I am learning about ‘publishing, legal and financial issues, and the need for other support to accomplish my goal. I know that in spite of the challenges, I will find a way to complete the book and make it available to the many cancer patients and caregivers,families and friends, cancer researchers, and clinicians who are ‘out there’ looking for help and hope!

I truly believe that we will get the support we need from those who care as I do and all of you ‘do’.

I recently received a phone call from a myeloma patient who has attended our Living with Myeloma Conferences and Caregiver programs over the past 14 years. Annie is an amazing woman in her mid 50’s which is ‘young’ for myeloma. It generally affects people over 60. But, we all know that statistics are only ‘statistics’.

What has always impressed me about Annie is her courage and faith. She has educated herself about her cancer and even reaches out to others to help them. And, she is her own ‘caregiver’. Annie moved to Arizona after her divorce, and made a new ‘start’ for herself: new job, new house, and new friends.

When she got her myeloma diagnosis, she ‘built’ a caregiving network of friends, neighbors, colleagues and her Church.

Through her stem cell transplant, long recovery, and subsequent treatments, she has remained strong and optimistic. And, she has become the caregiver for other cancer patients that she has met along the way.

She called me this week and told me that she was no longer in remission and was going to be in another clinical trial. I feel honored to be part of her caregiving network and I offer what I can. I share information about a 2nd opinion and an organization that helps match cancer patients with new clinical trials that are out there for rare forms of cancer. I recommend that she turn again to her caregiving network and her Faith.

Many of us have family who we can turn to, but as I have learned over the years, others are not always that fortunate. You may need to ‘build’ your own caregiving network or be part of someone else’s. There are organizations and resources that can also help and with the new treatments now available, you can use the internet to be part of your caregiving network!
With summer rapidly arriving, you may be busy with graduations and vacation plans. I will stay in touch and send my next Blog for July/August to let you know about ‘what’ is‘ happening on my Book and our program plans for the Fall.

Wishing you health and Peace. Together, we are building a Community of Caregiving!
More details later and on our website and Facebook.

Barbara Kavanagh
623 466 6246

Barbara Baroff Kavanagh, MSW, LCSW

Barbara B. Kavanagh is the Founder and CEO of Arizona Myeloma Network (AzMN). She is a published author and served as faculty for universities including Boston University, Boston College Graduate School of Social Work, and Arizona State University. She holds a master’s degree in Social Work from Boston University and a bachelor’s from Duke University. Her first business, People to People Associates, Inc., a counseling, consulting, and training company, operated for fifteen years in Lexington, Mass.

AzMN is 501(c)(3) nonprofit organization started in 2004 by Barbara and her husband Jack who is a 27-year survivor of multiple myeloma. In 2003, they moved to Arizona to be near the Mayo Clinic for his ongoing treatments. In 2005, Barbara organized the first of many Living with Myeloma Roundtable and Conferences in Scottsdale, AZ. The conference attracted more than 300 attendees annually. All AzMN programs are designed to educate cancer patients, cancer caregivers, oncology healthcare professionals, researchers, and the public on the newest in cancer treatments and how to give and receive the best possible care.

AzMN has delivered hundreds of cancer patient and caregiver conferences throughout the State. Multiple Cancer Caregiver Education Program (CCEP TM) conferences are scheduled in 2018. Conferences are free and open to the public. They provide cancer patients and their caregivers the practical knowledge, skills and strategies necessary to effectively care for themselves. CCEP TM is a customizable program for companies and healthcare organizations that want provide onsite training for employees and constituents.

The Office of the Governor of Arizona recognizes AzMN with a proclamation annually designating a week in March as “Arizona Myeloma Awareness Week.” AzMN is recognized by Great Nonprofits as a “Top-Rated Nonprofit” for multiple years. Barbara, herself, continues to receive awards for her work. She is the recipient of the prestigious Hon Kachina Outstanding Volunteerism Award, The Phoenix Business Journal’s Healthcare Hero Award, the Arizona Rural Healthcare Association Volunteer of the Year award and the 2014 Arizona Business Magazine’s Healthcare Leadership Award for Community Outreach. She was profiled as a Woman of Distinction in the 2016 edition of WOD Magazine. She is featured on radio, television, and in publications.

Barbara and Jack are mentioned in Tom Brokaw’s book A Lucky Life Interrupted: A Memoir of Hope. Her books on volunteerism and patient advocacy include The New Volunteerism, A Community Connection; The New Partnership: Human Services, Business and Industry; and Training Volunteers in the New Millennium: An International Connection reflect a life dedicated to teaching and mentoring others to achieve their goals and transform their own lives and those they touch. She is currently working on her next book “Caring for the Cancer Caregiver”. Her intent is to provide practical information on how to navigate the complex world of cancer patient and caregiver survivorship.

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