Regine's Book

First published in 2012 by Zest Books

35 Stillman Street, Suite 121, San Francisco, CA 94107

www.zestbooks.net

Created and produced by Zest Books, San Francisco, CA

© 2012 by Zest Books LLC

Typeset in Sabon and Gill Sans

Teen Nonfiction / Memoir

Library of Congress Control Number: 2012936085

ISBN: 978-1-936976-20-1

All rights reserved. No part of this publication may be reproduced or used in any form or by any means—graphic, electronic, or mechanical, including photocopying, recording, or information storage and retrieval systems—without the written permission of the publisher.

CREDITS

BOOK EDITOR: Dan Harmon

TRANSLATOR: Henriette Larsen

CREATIVE DIRECTOR: Hallie Warshaw

ART DIRECTOR/COVER DESIGN: Tanya Napier

MANAGING EDITOR: Pam McElroy

PRODUCTION EDITOR: Keith Snyder

EDITORIAL & SOCIAL MEDIA ASSISTANT: Ann Edwards

TEEN ADVISORS: Marcus Dixon, Alex Idzal, Maria Charlene Sacramento, and Frances Saux

Manufactured in China

LEO 10 9 8 7 6 5 4 3 2 1

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Every effort has been made to ensure that the information presented is accurate. The publisher disclaims any liability for injuries, losses, untoward results, or any other damages that may result from the use of the information in this book.

This translation has been published with the financial support of NORLA.

All photos courtesty of Regine Stokke, wiht the exception of those called ou in the book.

Copyright © Gyldendal Norsk Forlag AS 2010

Norwegian edition published by Gyldendal Norsk Forlag AS, Oslo

Published by agreement with Hagen Agency, Oslo

and Gyldendal Norsk Forlag AS, Oslo

Regine Stokke began to blog about her day-to-day life shortly after she was diagnosed with leukemia in 2008. Regine's stated purpose with her blog was to give people a sense of “what it's like to live with” such a serious illness, and in retrospect her choice of words seems incredibly apt—because, up to the last, Regine was relentless in living every day to the fullest.

Regine writes openly about the emotional and physical aspects of her fifteen-month struggle to recover, and explains how her disease impacts her life and her relationships. But that's only a part of her stunningly broad engagement with the world around her. She also takes painting lessons and shows her art at several shows. She goes to concerts and festivals whenever she can. She treasures every day she gets to spend with her friends and family. And, no matter how difficult things get, she remains a tireless advocate for cancer patients everywhere.

Regine's Book
, as it appears here, is Regine's story as we encounter it on her blog—supplemented with diary entries, a selection of photos, comments from readers, and remembrances from those closest to her. The book became an almost instant classic in Norway, and we at Zest are proud to be able to bring this tragic but ultimately uplifting story to American audiences.

On the day she died, Regine's passing was mourned by family, friends, and thousands of other people who had come to know and love her through her blog. Regine's honesty and bravery are an inspiration, and through her eyes, readers will discover a more vivid world—and a new appreciation for art, life, and the power of the human spirit. We hope that you will gain as much from Regine's story as we have.

Hallie Warshaw, Publisher, Zest Books

February 27, 2012

T
o help understand Regine's disease and treatment, it may be helpful to have some general information about how blood cells are made, how different types of blood cells function, and how leukemia disrupts the body's ability to produce healthy blood cells.

Blood cells are manufactured in the bone marrow (especially in the marrow cavities of the skull, breast bone, ribs, backbone, and pelvis) and can be divided into three main types, all of which play crucial physiological roles.

• Red blood cells (erythrocytes) carry oxygen to and remove waste products from the body's tissues.
  
• White blood cells (leukocytes) act as the backbone of the immune system, and fight infections by destroying bacteria and foreign materials. There are five different types of white blood cells (neutrophils, basophils, eosinophils, lymphocytes, and monocytes), each with a particular function.
  
• Platelets (thrombocytes) control bleeding by helping to form blood clots.
  

All blood cells develop from “master cells” called stem cells. During their development, stem cells develop specific characteristics (in medical terms, they “differentiate”) and ultimately mature into all of the peripheral blood cell types required for survival. Early on in their development, stem cells differentiate along two major branches and become either myeloid or lymphoid stem cells. These go on to develop into slightly more mature, but still primitive, “blasts.” After many additional maturational events, the blasts become fully functional mature blood cells, and find their way into the peripheral blood stream to perform the many important roles listed above.

Leukemia is a cancer of the blood-forming cells in the bone marrow. It is caused by mutations that occur early on in blood cell development, and it results in abnormal growth and differentiation of hematopoietic (i.e., blood-forming) cells. Leukemias can affect either the myeloid or lymphoid stem cells or both. So-called “acute” leukemias develop quickly and result in a proliferation of blasts—immature cells that are incapable of performing their normal functions. This results in many of the symptoms seen in leukemic patients.

Chemotherapy is the main treatment for all forms of leukemia. Chemotherapy targets quickly dividing cells with powerful drugs. In the process, however, other quickly dividing cells (such as the blood-forming stem cells and hair-forming cells) are damaged as well. This results in the common side effects associated with chemotherapy: damaged immune system, damaged bone marrow, and hair loss.

A bone marrow (or stem cell) transplantation is a procedure that helps restore the blood-forming stem cells destroyed by high doses of chemotherapy. It involves “harvesting” healthy stem cells from a donor and transfusing the harvested cells intravenously into the patient's blood just like a blood transfusion. After entering the bloodstream, the stem cells travel to the patient's bone marrow where they start producing new blood cells. A bone marrow transplantation may be a harrowing experience due to complications, but for some patients it is the only option for a cure.

Julianne and Lasse:
Regine's mother and father

Elise:
Regine's younger sister

Josefine:
Regine's cat

Eli Ann:
Regine's best friend

Martin:
Regine's closest male friend

Anne Marthe, Silje, Karina, and Marthe:
Regine's girlfriends

Svein Kåre:
blogger and lymphoma patient at Riksen hospital

Anne Marie:
Svein Kåre's wife

Bengt Eidem:
Norwegian politician and author diagnosed with AML (Acute Myeloid Leukemia) in 2005

Sofsen (Sofia Frøysaa):
blogger and Regine's friend

Morten Krogvald:
photographer and artistic director of Nordic Light International Festival of Photography

Ann Olaug Slatlem:
Nordic Light
volunteer who helps Regine exhibit and sell her photos

Maren-Sofie:
blogger diagnosed with ALL (acute lymphoid leukemia) in 2006

Autumn, 2008

Tuesday, November 4, 2008

Disclaimer: I've decided to start a blog about what it's like to get a life-threatening disease. Some of the content will therefore be too heavy for some people.

I
had just come home from school and didn't have a care in the world. Then Mom walked in, and right away I realized something was wrong. She had tears in her eyes. The doctor had called, and they suspected leukemia. I had to go to the hospital as soon as possible for a bone marrow biopsy.
¹

Right away I felt like my life had been shattered. I was crying my eyes out. I had a million conflicting emotions, but more than anything else, I was scared.

At the hospital in Kristiansund they started right out with the tests. The biopsy wasn't pleasant at all—I was shocked at how painful it was. And then I had to wait three hours for the results. I sat around at the hospital with Mom and Dad until the doctor came in. We were nervous and scared. He had tears in his eyes: I had leukemia, more specifically AML (acute myelogenous leukemia
²
). I could feel the fear spreading
all through my body when he said that. Cancer. The whole family was crushed. I couldn't stop asking myself: Is this a death sentence?

On Monday, August 25, we drove to Trondheim. That's where I had to go for treatment.

I was referred to the adult unit, where I had to take another bone marrow biopsy. This time it was going to be even more extensive than what they'd done before. In this kind of a biopsy, they have to drill out a bit of bone, and it's incredibly painful. I could feel my whole body jerk when the doctor yanked the piece out.

After that they showed us around the unit. It was like going down into hell. There was a small narrow hallway, old people, and one nineteen-year old. The first thing I thought when I saw him was “poor guy.” The doctor told me I might not get a single room. Damn it. I started crying. In the end though, I got my own room, but it was small and run-down. How would I manage to stay there for so long? I wondered. We asked the doctor if I could be placed in the children's unit. At first, he said no, but we kept at it, and the third time he said he'd try to arrange it. It worked. Third time's a charm.

After a while I was moved to the children's unit. They told us the cutoff age was eighteen. So then why the hell was I put in the adult unit in the first place? I get irritated just thinking about it. I'm glad I'm not eighteen.