Cancer Caregiving Journey: New Year

Posted on 01/14/20 by Barbara Baroff Kavanagh

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January, 2020

Dear Friends:

Looking back on 2019, you may be thinking that you are grateful that you ‘made it’ through another year! Living with cancer as a ‘caregiver’ is often a series of ‘small victories’. And, sometimes the best news is that your loved one is ‘maintaining’, or ‘no change’. Over the past 28 years of doctor appointments, with my husband, Jack, there was always anxiety. And, generally, it was even more stressful at the Holidays. You want to be ‘happy’ and plan fun activities, but you also have to be prepared ‘in case’ you have to cancel plans. That is what happened to Alice. She had just gone through her 2nd ‘transplant’. She had been diagnosed with multiple myeloma 5 years ago and had the 1st transplant and was able to leave the hospital a week later, and seemed to be doing well. During a routine follow up visit about 6 weeks after her 2nd transplant, she was diagnosed with a rare form of Leukemia. Her best ‘chance’ was for a 3rd transplant which then required 100 days of treatment and ‘home’ isolation. Part of this time was in the hospital and then daily visits to the hospital and 24 hour ‘home care’. We were able to help her arrange a schedule of family and friends, both local and others, flying in for a week or a few days at a time. Elisa’s courage and positive spirit were amazing and 2020 looks very hopeful for her.

And, for so many, the new decade promises new treatments and more choices for all cancer patients and their devoted caregivers. We can look back on 15 years since Jack and I ‘founded’ the Arizona Myeloma Network and shortly after, the Cancer Caregivers Education Programs, CCEP®. From the 1st Living with Myeloma Conferences with 60 people, including staff and faculty, we grew to over 300 patients, families, healthcare professionals, and cancer resources. We provided up to date information about clinical trials, the latest research and treatment options and quality resources. And, we learned about the importance of collaboration of all of these experts on behalf of cancer patients and families.

This year was very special when we were honored with a Proclamation by Governor Ducey of Arizona with Cancer Caregivers Week, November 16th‐23rd. We hope that this initiative will become an Annual event and also a National one. We would then be able to provide more Awareness, Education and Advocacy for cancer caregivers so that we can continue to improve our own ‘self-care’ and thus better care for our patient. We are Hopeful that in the next decade, we will finally achieve the greatest goal: A cure for all cancers! And, my own personal goal for 2020, is to bring much needed information and resources together in my book, ‘Living with Cancer, a CareGivers Journey’. I am blessed and awed by over 15 cancer researchers, clinicians, other healthcare and cancer professionals, volunteers, cancer patients and caregivers who are contributing their ideas, knowledge, and advice to provide a practical guide and inspiration for all who ‘are’, or will be ‘Living with Cancer’.

We also welcome your caregiver story and have a ‘survey’ on our website that you can fill out. You can use your name or not. We will put the information together and share the ‘results’ both on our website and in the book. It is an opportunity to learn from you what has helped you on your caregiver journey and suggestions for how we can improve services and programs. Cancer Caregivers Survey

Together, we hope to build a Network of Caring for all cancer patients and caregivers! Warm Regards,
Barbara Kavanagh, Founder and Ceo, AzMN® and cancercaregiversaz www.azmyelomanetwork.org www.cancercaregiversaz.com

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.

This story is provided by AARP Colorado. Visit the AARP Colorado page for more news, events, and programs affecting retirement, health care, and more.

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