Did you know that September is National Leukemia and Lymphoma Awareness Month?
I bring you Erin’s story. Please keep in mind for each book sold, it’s still good to be alive press will donate $1 profit to Be the Match, operated by the National Marrow Donor Program, a nonprofit dedicated to helping every patient get the life-saving marrow transplant he or she needs.
With one phone call, author Erin Michaela Sweeney’s life changes forever. She becomes a terminal cancer patient.
This memoir recounts the harrowing months after diagnosis during which Sweeney endures eight- to ten-day chemotherapy rounds administered during hospital stays in the hope of getting into remission. If she makes it that far, then it is a race to find a donor who matches her profile.
Erin is a woman facing the unthinkable yet she manages to focus on the positive as she deals with an unpredictable future. Her grace, determination and hope is inspiring. Luckily she has the support of her husband, her young son serving as her motivation. Her journal is affecting as she shares her inner most thoughts and feelings, her courage is amazing. A woman appreciating everything life has to offer as she knows first hand its fragility. Erin possesses tremendous strength and I am humbled by her story. I certainly closed the book with a new outlook and appreciation of life in general. Good health is a gift we often take for granted, the Erin’s of the world force us to count our blessings and be thankful for all we have. Please visit Be the Match, it can make all the difference in the world, save a life.
Raven Haired Girl extends a warm welcome to Erin Sweeney. Thank you for joining Raven Haired Girl Erin. For Starters tell us a bit about you and of Every Breath Is a Gift: Reflections on My Leukemia Journey.
First, thank you for featuring me on Raven Haired Girl.
Though I am merely a speck in this home we call the universe, with the publication of my memoir I feel I can now claim the title writer. For more than twenty years, I worked as an editor for museums and in academe. Due to continuing health issues, I also consider myself a “napper extraordinaire.” My son calls me mommy; my parents, daughter; and my brother answers my phone calls with “Hello, my sister.” I love to practice and teach yoga, and so I call myself a yogini as well.
The memoir chronicles a year in my life, roughly from the leukemia diagnosis in February 2011 to the first anniversary in 2012, with some bits before and after. Though the minutia is about me, many of the reflections are universal. All readers wonder about their futures, mortality, and how exactly fax machines work, right?
What were your goals and intentions in this book, and how well do you feel you achieved them?
With Every Breath Is a Gift, I intended to share my story so other patients in my situation and their caregivers, family, and friends could know more about leukemia and its treatments, especially marrow transplants. I await anecdotal evidence on whether I accomplished my goal. An employee at City of Hope in Duarte, California, where I am still monitored, told me she and her colleagues were eagerly anticipating the memoir, which was a nice surprise. Though I did not set out to write on the human condition, people have really responded to the larger themes in the book.
What was the hardest part of writing this book?
I could not write about the cross-country plane trip to get to City of Hope. It was just so awful for me physically, mentally, and emotionally. Every time I faced the computer screen to write about the memories, I just broke down. So I let it go.
What did you enjoy most about writing this book?
It illuminated a core strength of mine: resilience. My resiliency got me through all the rough times, along with the love and support of family and friends, of course. Oh, and a little thing called modern medicine. Yup.
What question do you wish that someone would ask about you and/or your book, but nobody has?
Why no photos in the book of your sexy bald head?
Please share advice for those dealing with cancer, to caregivers, to friends/family?
If you are diagnosed with cancer, take things day by day and keep a sense of humor (see previous answer). Caregivers must take care of themselves physically, mentally, and emotionally, or they will become exhausted. Friends and family can support those with cancer by offering specific, concrete help, such as “I will drive you to clinic appointments every Monday” (giving the caregiver time to rest or exercise or go to therapy). As a family friend who is a doctor living with cancer said at the start of my journey, cancer is a marathon, not a sprint, so use your energy wisely. And I would add, don’t go down the rabbit hole of what ifs.
Suggestions to others in similar position without a support system?
Talk to your assigned social worker to find out about support groups. Often area hospitals and libraries have specific groups (head and neck cancer, for example) that meet monthly. Call a regional or national organization to receive a phone buddy. For instance, I was diagnosed with leukemia, so I contacted the Leukemia and Lymphoma Society, which matched me with a person who was three years in remission. Reach out to positive-minded friends and acquaintances to share your situation, and they just might become your dependable lifelines.
How does one become a bone marrow donor? Why is this not as widely encouraged and/or publicized as blood donation?
To become a donor, join the national bone marrow registry, either online or at a donor registry drive. Here’s the link for both, along with FAQs: https://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/.
Be the Match is doing its best to get the word out about the national registry, yet people still haven’t heard of bone marrow donation. Perhaps because bone marrow transplants are mainly used to treat a subset of illness, specifically certain blood cancers, sickle-cell anemia, and other diseases, it is just not as common as blood transfusions, which are used for lots of accident and illness scenarios.
Biggest misconception of bone marrow donation?
Lots of people still believe the only way to donate is through pelvic surgery to harvest bone marrow. In fact, most volunteers donate peripheral blood stem cells (PBSC) through a method similar to blood donation. After drawing blood from one arm, the PBSC are filtered out, and the blood is returned via the donor’s other arm. The treating doctor decides whether receiving PBSC or bone marrow is best for the patient.
The miraculous thing about bone marrow donation, in contrast to organ donation, is the human body regenerates the missing 1 to 5 percent of PBSC within four to six weeks.
What do you want to be your legacy?
If I do it right, I’d like to raise my son to be not only a gentleman but also a gentle man to himself and others. It would be great to pass my resilient, passionate, pragmatic, calm, and contented qualities on to him. My son will definitely be my legacy.
What inspires you?
Every single day, moments take my breath away. Just a few days ago, I saw a red-throated hummingbird sip from a honeysuckle blossom outside my window. An ordinary event, yet simply amazing to observe up close. And I’m alive to experience these everyday, yet awe-inspiring, moments.
Do you have anything specific that you want to say to your audience/readers?
The title for my memoir, Every Breath Is a Gift, came from a bumper sticker on the back of my own car. You just never know where the next great thing might be. Keep your eyes open and your heart accepting.
What’s next for Erin?
I’ve outlined a nonfiction book, tentatively titled “Move Beyond Your Cancer Identity.” I also have a notion for a magical realism novel about Hindu goddesses and gods. I’m curious about writing something for families to help them learn about hidden sugar in their kids’ foods. And I’m terrified to compose poetry, so I should probably try my hand at that, too.
Author Erin Michaela Sweeney
In February 2011, Erin Michaela Sweeney was diagnosed with ALL (Acute Lymphoblastic Leukemia), a rare and aggressive blood cancer. She is now a writer, mommy, yogini, daughter, editor, sister, and napper extraordinaire who lives in Claremont, California.
•Paperback, first, 118 pages
•Published August 13th 2015 by it’s still good to be alive press