Leifer John - After you hear its cancer : a guide to navigating the difficult journey ahead

After You Hear
It's Cancer

Library of Congress Cataloging-in-Publication Data

Leifer, John, 1957

After you hear it's cancer : a guide to navigating the difficult journey ahead / John Leifer ; with Lori Lindstrom Leifer.

pages cm

Includes bibliographical references and index.

ISBN 978-1-4422-4625-6 (cloth : alk. paper) -- ISBN 978-1-4422-4626-3 (electronic)

1. Cancer--Popular works. 2. Cancer--Patients--Popular works. 3. Cancer--Treatment--Popular works. I. Leifer, Lori Lindstrom. II. Title.

RC263.L369 2015

616.99'4--dc23

2015000013

TM The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences Permanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992.

Printed in the United States of America

A Life-Changing Experience

While many people revel in Christmas, my wife loves the sanctity of Easter. So it was no surprise Lori wanted to attend sunrise Easter services on March 31, 2013. The service was jubilant, and we spent the day feeling that all was right with the world.

When I finally crawled into bed around 11:00 p.m., I began to drift, though I wanted to stay awake until Lori finished her shower. A few minutes later, Lori quietly drew back the covers and slid into bed. I woke long enough to tell her I loved her and give her a short kiss.

Then I was outuntil her sobs summoned me back to consciousness. Whats wrong? Whats going on? What did I do? I asked.

There was no response for what felt like an eternity. Then, in an uncharacteristically weak voice, Lori said, I found something in the shower.

What do you mean you found something in the shower? I said anxiously.

I found a lump. It is two centimeters. Its cancer.

Not only had Lori found a lump in her breast, but also, as an oncologist, she had determined its size and that it was malignant. I knew she was a great doctor, but I prayed there was room for error. Many times during our marriage, I hoped Lori was wrong, but never more than at this moment.

My wife, a radiation oncologist, would soon go from being a provider of care to a receiver of it. Lori and I would gain a new perspective about why the word cancer, rolling slowly and menacingly from our physicians mouths, rattles us to the bone. It is a word we hope never to hearcertainly not in the context of our health or the health of a loved one.

When you hear the word cancer, its as if someone took the game of Life and tossed it in the air. All the pieces go flying. The pieces land on a new board. Everything has shifted. You dont know where to start.

Regina Brett

As one patient said, I thought I was going to die. I thought I was going to pass out. I was upset. I called my roommate and I was hysterical. I didnt know what to do. I was like blown away. It was a complete shock. To me, ovarian cancer is a death sentence.

Overall, newly diagnosed cancer patients will have a 68 percent chance of surviving for five years or morea dramatic gain from forty years ago, when the survival rate was less than 50 percent. Even so, nearly 600,000 Americans will die from cancer this year, making cancer the second-leading cause of death in our country.

If youre lucky, the journey will be a short divergence from lifes path. For some, however, it will be a dramatic fork in the road to an unknown future. For all, it is a life-changing diagnosis.

Imagine going on a trip without knowing the destination or method of transportation, with no map to guide you and no planned arrival time. Now imagine you are leaving tomorrow, and there is no time to pack. It is little wonder that cancer patients often feel overwhelmed, shut down, and are unable to participate in crucial decisions about their care. Our logical minds stop working just when we need to be thinking with absolute clarity about our next steps.

Karen Sepucha, a professor at Harvard Medical School and one of the leading authorities on how patients make crucial health care decisions, explained it to me this way:

By the time people face cancer, theyve usually faced other major issues in their life and made other difficult decisions. What I have found is that, sometimes, when they get into the medical community, they forget all of that. So people who have pretty advanced ways of taking care of their families and making good decisions all of sudden get to the doctors office and lose all of the skills that allow them to question things, get other opinionsthings that they would do in any other aspect of their life.

It is a moment when time stands still, a moment laden with anxiety and uncertainty. A new journey is beginning, and it is one for which we are ill prepared. Just ask Bill E.

Bill E. is a retired school principal with a quick and beguiling smile. His easygoing nature does little to betray his unbending spirit. It is the kind of spirit needed to work with troubled kids, which was Bills passion throughout a career spanning more than forty years.

As an African American growing up in rural Missouri in the 1950s, Bill faced plenty of challenges. In fact, Bill believed he was prepared for just about anything that life could throw at himuntil he confronted cancer.

It was shortly after his retirement when Bill first noticed a lump in his neck. His primary care doctor sent him to a specialistan ear, nose, and throat doctorwho gave Bill an antibiotic and scheduled a follow-up in three months.

When the lump was still present on reexamination, the ENT ordered a biopsy. Bills life was about to come to a screeching halt. When the doctor told him he had cancer, Bills first thought was, Youre kidding me. I just retired. I want to live this new life!

You are not really sure, are you? he asked his doctor.

Yes, came the unflinching response.

As a patient with a head and neck cancer, Bill faced a very tough road ahead. I teared up and said, This cannot be happening to me. I had worked all of my life and tried to do the right thing. I pray to God. I go to church. So Im asking myself if this can really be. I felt like I had no alternative but to die.

Bills journey through cancer had begun in earnest.

While no book can alleviate the emotional or physical challenges brought on by cancer, it can provide a roadmap to navigating the journey aheadwhether blessedly short or arduously long.

There will be crucial junctures along your journeytimes when you need to make decisions regarding your treatment. These decisions can have a dramatic impact on your final destination as well as on how taxing your trek will be. Our job is to heighten your awareness of those times when such decisions arise and empower you with tools and information to make informed and appropriate choices.