Every Breath Is a Gift: Reflections On My Leukemia Journey

By Erin Michaela Sweeney

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 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. Will she receive a life-saving marrow transplant in time? And will she live long enough to see her son, Eliott, learn to walk, begin to talk, and have his second birthday? The author’s blog posts about treatments, therapies, and home life are uniquely matched with reflective essays culminating in the truth that Every Breath Is a Gift. If you or a loved one faces leukemia or a marrow transplant (or both), this volume will bring comfort through reflections about one woman’s cancer journey. It's still good to be alive press will donate $1 profit to Be the Match for each book sold.

• Language: English
• Publisher: Lulu.com
• Release date: Aug 5, 2015
• ISBN: 9781329443006

Book preview

Every Breath Is a Gift: Reflections On My Leukemia Journey

Every Breath Is a Gift: Reflections on My Leukemia Journey

Erin Michaela Sweeney

© 2015 by Erin Michaela Sweeney

All rights reserved

Printed in the United States of America

it’s still good to be alive press

Claremont, CA 91711

www.ErinMichaelaSweeney.com

ISBN: 978-1-329-44300-6

Cover photographs by the author

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.

For Eliott

Chapter 1. Cracks in My Book’s Spine

my book of life

I believe that we all have a book of life. It starts out with fairy tales, hazy images, and family lore made more concrete with photographic evidence. Scrapbooks, diaries, recordings, artwork, collections, knick-knacks, and memories all contribute chapters to a person’s book of life. And shattering moments of terror, illness, separation, pain, and, ultimately, death, are the cracks in a book’s spine. My leukemia diagnosis is a large crack in my life, creating a Before and After, but my book did not break. As it turns out, we all need to have some wear and tear in life to contrast with the health, wealth, and happiness. Our lives are not worth living without some damage to those book spines. No matter how thick or thin, each and every book of life is a treasure.

***

I’m a happy outlier who should be dead, but I’m not. Let me explain by starting from the beginning of this chapter in my life.

Thursday, February 10, 2011, was a typical day—until it wasn’t. My husband, Jonathan, left before sunrise for the recreation center for a workout. I woke up at 6:00 a.m. to breast-feed Eliott, our twelve-month-old son. I pumped while having breakfast with Eliott playing in his pack-and-play. Then I got us dressed and out the door to meet Jonathan at the recreation center to have him take over baby care. My two guys—husband and baby—would head home for the day. I taught my 8:00 a.m. yoga class as I had been doing twice weekly for three years. I showered and got ready for work as Managing Editor of the William and Mary Quarterly, a humanities academic journal. That afternoon I headed home to see my guys. The baby and I snuggle nursed on our reunion. Jonathan made dinner while I played with Eliott, then I bathed the baby, breast-fed him again, and got him ready for bed. Jonathan and I read Eliott two books and kissed him good night.

I then checked my phone messages. The hematologist (blood specialist) who had conducted some additional testing asked me to call him that evening at home. It’s never a good sign when a doctor gives his home number. When I reached him, the hematologist said he had bad news. The test results indicated I had a rare and aggressive form of blood cancer known as Ph+ALL. In an instant, I went from Erin, healthy vegetarian breast-feeding mom and wife of nine years, to someone with terminal cancer.

The Big C. Cancer. Blood cancer. Leukemia. Acute lymphoblastic leukemia (ALL). Philadelphia chromosome positive ALL (Ph+ALL). I’m trying desperately to pinpoint the exact name of this illness coursing through my veins in hopes I might have it wrong, that the doctor could have misdiagnosed me. No, I can’t have cancer. Not me, please not me. My husband goes to the Internet to try to find out what I might be up against.

My mind was reeling at what I heard from the doctor. Without treatment, adults usually die of Ph+ALL within weeks of diagnosis. Terminal cancer. Wait! Back up a minute. Weeks? Weeks?!? Wha… If there was a chance of living two months, the doctor would have said months, but he said weeks, which means seven weeks or less. Jonathan is turning forty in May. I may not be alive to celebrate with him? I might not even live long enough to spend our tax refund? (And why are taxes jumping into my brain at a time like this?!)

There’s hope yet. Maybe I can defy the odds. I might just be able to live long enough to see my husband turn forty, watch my baby become a toddler, perhaps even live long enough to take life for granted again. But first, I have to live beyond my terminal prognosis. I have to choose to want to live life because every breath is a gift.

After receiving my leukemia diagnosis over the phone on Thursday evening, February 10, the following afternoon my husband and I, with our one year old in tow, met with the hematologist to talk about options. Though my condition was a rare form of blood cancer, the hematologist had treated one patient with it in his career. He told us that most adults with my type of leukemia (ALL) with my unfortunate chromosomal variant (Ph+) die within weeks of diagnosis without immediate, aggressive chemotherapy leading to a marrow transplant. At first, he said I should enter the hospital the following Wednesday. By the middle of the conversation, he said Tuesday. Toward the end of the meeting, he recommended I enter the hospital that Monday, Valentine’s Day, to begin chemotherapy. Jonathan asked what the rush was. The hematologist’s reply: every day counts. Also, he was trying to decide between two different chemotherapy regimens. We asked him whether he’d be willing to consult with a colleague of a family member who works at the University of Virginia treating leukemia to determine which regimen to follow. Though many doctors would find such a request an affront, not this one. How is it that I lucked out with such a collaborative fellow? Don’t know, but it probably saved my life. And that’s just the beginning of how I defied the odds.

When discussing the details of the appointment that afternoon on the phone with my parents, I clarified for them that I would be in the hospital, not, as they had mistakenly thought, receiving my chemotherapy on an outpatient basis, visiting a center for doses but staying at home between sessions. It quickly became apparent to my husband and me that I would need a platform with which to disseminate accurate medical information to family and friends. Jonathan set up a private website account on CaringBridge, a nonprofit bringing people together during a health event. CaringBridge made it possible for me to share updates to many at one time on its journal section. And many shared their support and good wishes via the guestbook.

I found that the CaringBridge journal entries were something more than just an information conduit; they became a way to illuminate for others what I was going through in layman’s terms. Two years after my diagnosis, I realized it might be worth sharing my story more widely to help others in similar situations and to let people know what it’s like to go through what I endured.

This memoir is about how my leukemia diagnosis and treatments as well as subsequent marrow transplant and recovery have affected my life. Perhaps some of the lessons I learned will assist others struggling with their own or a loved one’s medical journey. I have chosen to present my CaringBridge journal entries as a kind of call, with reflections on them as a response. This call-and-response style looks at one year, give or take, in my book of life.

Chapter 2. The Virginia Hospital

help fortify me for the days ahead

Surrounded by Positivity

Sunday, February 13, 2011

Thank you to all my family and friends for sharing your love so openly with me. Your notes and calls and hugs mean so much; they help fortify me for the days ahead. Tomorrow is Valentine’s Day, and I’m going to be separated from my two guys who I love the most, which makes me sad. Please send an extra (virtual) hug and kiss to Eliott and Jonathan for me.

***

What to write when not knowing what is ahead? I expressed gratitude for the many, so many, who embraced me at the precipice. When standing at the metaphoric cliff’s edge, I used the word fortify to describe what peoples’ outpouring of love felt like to me. In retrospect, what I was doing was building a fortress of optimism around my heart. I was choosing not to feel the horrible sensation of free falling into an abyss. Instead, I decided to hang there, like a cartoon character, frozen in midair, holding my breath, too afraid to look down. I kept myself surrounded by positivity because, otherwise, I would drop like a stone into the deep darkness far below.

***

My Nighttime Sky

Wednesday, February 16, 2011

How can I begin to express how stunned and amazed I am by the outpouring of love? Please know that your CaringBridge and phone messages brighten my spirits. And keep the cards coming! To answer some of the sometimes random queries posted in the guestbook: my dual-access port is port side, which will satisfy my sister so much; Carrie: blue