Exit Strategy: Depriving Death of Its Strangeness

Exit Strategy

Depriving Death of its Strangeness

By David B. Oliver

Cover concept and design: Brad Oliver and the Oliver Rains Group, LLC

SMASHWORDS EDITION

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PUBLISHED BY:

David B. Oliver on Smashwords

Exit Strategy: Depriving Death of its Strangeness

Copyright 2013 by David B.Oliver

Smashwords Edition, License Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

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Exit Strategy: Depriving Death of its Strangeness

Men come and they go and they trot and they dance, and never a word about death. All well and good. Yet when death does come—to them, their wives, their children, their friends—catching them unawares and unprepared, then what storms of passion overwhelm them, what cries, what fury, what despair!. . . To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness, let us frequent it, let us get used to it; let us have nothing more often in mind than death. . . We do not know where death awaits us: so let us wait for it everywhere. To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave.

Michel de Montaigne (1533 – 1592)

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Table of Contents

Acknowledgement

Preface

I. First Signs

II. Bad News

III. What to Say

IV. A Time to Teach

V. The Chemo Café: A Time to Treat

VI. Coping: A Time to Learn

VII. Envisioning: A Time to Dream

VIII. A Time to Wait

IX. A Time to Love

X. Exit Strategy: A Time to Die

XI. Afterlife: A Time for Closure

XII. Lessons Learned: A Time to Reflect

Epilogue

About the Authors

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Acknowledgement

I wish to acknowledge all the people who have made lived moments in my life so special, worth living. Most of them are mentioned at one time or another in this book, others have died and moved on to wherever dead people go, and then there are countless others who have had a powerful influence on my life but are hidden in the museum of my mind until for unknown reasons, I recall their special gifts. I feel the greatest legacy I leave behind is my children and grandchildren. I shamelessly admit that I have made a huge difference in their lives, but the wonderful things they have done for me cannot possibly be captured here.

A word for and about Alan Scher Zagier deserves mention. He is an award-winning journalist and teacher with nearly 20 years of experience as a reporter, editor and journalism professor. His work has appeared in the New York Times, Washington Post, Boston Globe, USA Today and many other publications. He joined The Associated Press in 2005, remaining in Columbia, Missouri while covering the state, region, nation and world from our Midwest college town. He is a member of AP’s national education reporting team while chronicling stories ranging from deadly tornados to wrongful convictions to the business of college sports. And he is my friend.

Hearing of my journey with cancer and response to it, Alan asked to meet with me the day after Christmas, 2011. He followed me to chemotherapy treatments, interviewed my family, friends, and colleagues, and wrote a story about me that was published in over 800 media outlets across the United States and around the world. The story went viral and before I knew it my wife and I were on a national stage. While writing this book, he motivated me to include my memoirs and life experiences that have played such an important role in how I have chosen to deal with this cunning, baffling disease. He edited several drafts and made sure of the accuracy of my claims and accounts. I wanted to put with Alan Scher Zagier on the cover of the book, but he insisted it was my story, not his. What a guy, what a friend; I appreciate his friendship, fellowship, gifts, and graces.

And finally, and most importantly, I wish to acknowledge my wife, Debbie. In the pages that follow I make the point over and over that it is the caregivers of persons with terminal illness that suffer the most. The stress and strain is ubiquitous, an everyday roller-coaster experience. And the reward in the end is to be left alone. It is not fair. During the ordeal the majority of the attention, sympathy, well wishes, and more is on the dying person, not on the one caring for him or her. Yet not wanting to appear selfish, most caregivers remain tight-lipped; and this when they are often in need of the same amount of attention and care. In spite of it all, the deep love we share for each other has risen to levels that I once thought were unattainable. The sharing, the closeness, the intimacy, and caring have, at times, made me grateful for the cancer. The drama of life is found in our relationships with others, and in Debbie, I discovered a gold mine.

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PREFACE

When I was diagnosed in October 2011 with Stage 4 incurable cancer inspiring others was the last thing on my mind. After barely absorbing the news myself my immediate goal was to figure out how to tell my fellow faculty members in the Department of Family and Community Medicine at the University of Missouri’s medical school. I broke the news to colleagues with a home video that was quickly passed around the school. The many heartfelt viewer comments led my wife Debbie and me to create our own YouTube channel. I wanted to put colleagues at ease; to show them I was comfortable with the diagnosis, and hadn’t lost but perhaps even honed my well-known sense of humor. My hope was for everyone to approach me openly and honestly, avoiding those awkward encounters full of pretense and avoidance. Faculty members began to e-mail and share the channel with other scholars, researchers and even students. My children posted the YouTube link on their Facebook pages, and word began to spread.

My support network at work, home and in the community grew exponentially. Wishing to beat cancer to the draw, two weeks later I decided to videotape the shaving of my head to get ahead of the inevitable shock of others seeing me bald. Requests for my story and invitations to teach about it began to escalate. I produced more videos, and then a blog, http://dbocancerjourney.blogspot.com to meet the surging demand.

Mizzou Weekly, a newspaper for university employees, published a story about my situation and requests for the videos gained momentum. Alan Scher Zagier of The Associated Press then came aboard. He followed me for more than a month, often to chemotherapy and other treatments and attended some of my presentations to students and other groups. When his story was released to the AP’s national and global audience, my journey took a new turn as the blog went from 1,200 to nearly 10,000 hits in 48 hours.

The AP story was published in hundreds of online and print news outlets. I was contacted by ABC Good Morning America and ABC World News Tonight sent a crew to Columbia for an entire day of filming. CBS This Morning with Charlie Rose flew Debbie and me to their New York studio for a live broadcast. The YouTube hits and blog visits kept increasing. Comments from around the world came pouring in; at the time of this writing, we had received more than 55,000 visitors from 74 countries.

Again, my intent was to start conversations, to teach people what it was like to have a death sentence and how, in the face of it, to focus on living and not the dying. Many continue to call my decision to teach others about this illness inspirational. If that is what it is, I’m gratified and honored that it affects them this way. But from listening as well, I have become convinced that this cancer thing is much bigger than my story. And so it needs to be told.

Through my experience, I wish to teach people how to talk about living and dying with terminal disease and share with them lessons learned in the process. The public response, both domestically and internationally, has led me to believe that there are millions anxious to learn more about this dreadful disease and how to cope with it. This story is about both family members and healthcare professionals too, integral parts of similar dramas. We need to teach physicians and medical students the impact of sharing bad news, and the feelings of patients who will receive it. We need to learn how to care about dying people rather than giving them technical service, especially when there are no cures. We have to emphasize the importance and burdens of family caregivers who, I believe, suffer the most. And we must not forget about the person at the center of it all; the one who is dying, who lives every day knowing that the end is one day closer and thus becomes more anxious about the all-too-fast approaching last days and moments. I want to share my story to reveal the guarded secrets of dying, and facilitate both private and public discussions that could free thousands who are socially trapped in a cave, alone, frightened facing the end of their lives. I hope sharing my journey will make a difference. What I want to achieve is best summarized by a recent e-mail I received from fellow cancer traveler:

"The wonderful way you communicate through the video reminds me of how I used to be, he wrote. Due to the illness, I've pulled back from people and have tended to cloister myself. You've given me impetus to get out, be happy and stay connected to friends and community.

If my story can help people like this individual then this book will have been well worth it.

David Oliver

March 2013

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I. FIRST SIGNS

There appear to be two lymph nodes coupled together.

The words hung in the air as he measured the lumps. Just how big is a centimeter, I wonder. Normally I could easily calculate it in my head, comparing it to an inch. But I had two of them, each larger than a centimeter.

Lymph nodes, swollen; growing over a 4-month period on the side of my neck, calling to me each morning as I slide the razor over the ever-increasing mass, hollering to me, Say something; speak up! Scar tissue from a previous removal of basil cells in 2009 is my choice for denial. I say little.

His tone betrays the physician’s attempt to calm my nerves. He’s not just my doctor, he’s my best friend, and of all things, my boss. Who can claim such a relationship with a person who in so many different and wonderful ways adds tons of value to the meaning of friendship? But now he has moved into a professional demeanor. I have seen it before in his interactions with others, and now it is directed at me.

Softly and with a physician’s calming voice, he says, "Let’s get a blood draw, some X-rays (I forgot about my sore back; he covers everything), and a CT scan." I think I respond affirmatively, but for the life of me (no pun intended), I’m not sure what I said. A CT scan, why a CT scan? I’m thinking and asking and questioning but the words are never uttered. I fear that nothing will be the same again.

He anticipates my concern and responds, To confirm the presence of the lymph nodes, the tissue. And I will schedule a visit with an ENT (ear, nose and throat) surgeon who most likely will perform a needle biopsy. Oh my God, this is moving fast! Is this it? Is this the beginning of the end? I am simply not ready to die; worse, I don’t want to die! Just last summer I cycled 72 miles, longest distance ever. It’s not fair! Damn it!

The blood analysis reveals little only confirming that it is not a best-case infection scenario. The X-rays were, I think, to look for sources of the pain in my back but it appears to be arthritis to go with the bone-against-bone in my knees. Ironically, it was the quarterly appointment for the injection of steroids in my knee joints that led to my inquiry about the growth on my neck. And isn’t that always the case? The dreaded evidence or at least a suggestion of cancer seems to always surface during some other routine examination or procedure. It happened to my mother 23 years ago and now it is happening to me. I am worried.

I am convinced that Steve, my best friend/physician, has cashed in some chips and arranged a faster than normal appointment for the CT scan. Two days later I bypass what seems to be a rather long line at our University Hospital. The very professional and compassionate radiology techs run me into the tube, give breathing instructions, inject the dye, and in no time at all, it is over. The entire focus of the procedure is my neck. It is Friday; I am told that the results will be ready on Monday.

Yes, we have some enlarged lymph nodes, Steve tells me after the longest weekend ever. The CT confirms we have some neoplasms. The needle biopsy has been scheduled, but I want to warn you, the biopsy may not provide an answer either, and if that is the case, only by cutting it out can a determination be made.

My doctor friend comforts me, but is candid and direct about what is to come. I love his honesty, style and expert handling. If a good beginning to this drama can be claimed, this is it. Nevertheless, Debbie and I find it hard to breathe; we are dazed.

Debbie is going through her own nervous reaction to all of this; she listens intently to every update. Waiting is driving us both crazy. All kinds of thoughts began reverberating in my head. I may not have a lot of time; I can’t waste it; where do I begin? How can I best live the rest of my life? I have so many questions, thoughts; a steady stream of consciousness alternating between anger and serenity; maybe it’s not so bad to know when the end might be near; time to plan, think, and make decisions. But maybe it’s nothing! I want to know! I hate this, feel helpless; I can’t believe this is happening.

We spend the weekend at the Lake of the Ozarks, a 90-minute drive south. Combining pleasure and business in this beautiful part of Missouri is a distraction. I have to give a speech at an annual state conference of volunteers who help older people understand their Medicare benefits; she shops.

It is a gorgeous day and we make the most of it, voicing our concerns, our fears, our plans, both holding back the tears and trying to be strong. She is going through this with me all the way. She has already cancelled a major presentation of her own on the day of the biopsy; she will be there by my side.

While the previous weekend was too long, this one is too short. Before we know it we are making our way to our needle biopsy procedure at the cancer center. All kinds of thoughts are going through my head.

I wonder how many people have been in and out of the cancer center to be diagnosed, treated and comforted as they progressed from life to death. Probably too many to count; and now I am walking down the corridor for my turn. These are not morbid thoughts, only realities. This should be an easy procedure, I think as I joke with the nurses who greet me on the second floor. The first thing you see when you exit the elevator is a large Gynecology sign so I exclaim, I’m here to have my baby. The nurses snicker as if they have heard this before.

A nurse greets and escorts us to an examination room. A fancy, electronic chair is positioned in the center of a large room not unlike an operating table in its setting. I’m getting nervous. Ruth, the nurse, is very good, and a young LPN student is an observer. They tend to some preparations for the biopsy and leave us to look around until Dr. Smith (not his real name), a resident, arrives. Nervous, it is obvious he doesn’t know the first thing about what will be going on. And worse, since he’s from Texas he becomes the butt of ruthless teasing when I learn he is a huge University of Texas football fan. I think he was relieved to have his mind taken off the task at hand. He confides he wants to go into plastics or something similar – this oncology gig is just a rotation, a required stop along the course of learning. He did however show us the actual X-rays of my neck and try to explain them to us. It was our first look at the intruder.

When the surgeon arrives, I know all the small talk is an attempt to relax me. Let’s get on with it! It is then that I learn that there will be more to this than sticking a needle into my neck to withdraw tissue. Oh my God, he is spraying something up my nostril in preparation for a scope. What is he doing, I wonder. Maybe he is searching for more nodes. I am withdrawing fast. The nose search is not so bad, but then he says, Now this is going to be the most uncomfortable part. I take a deep breath. He inserts his finger under my tongue pushing deep to reach some part of China! I gag and am sure that I will throw-up at any moment, but somehow I hold it back. And then the biopsy! The big Texan resident is directed to pull on what looks like the handle of a machine gun and just at the right moment the surgeon penetrates the skin and extracts a bit of tissue but of insignificant size. We do it again, and this time the wad of tissue is more than enough to determine the next steps in the ordeal. As he turns to put it between slides, my head starts spinning, I get a very cold sweat, become extremely pale and say, I gotta tell you, I’m very dizzy! I am sure I am going to pass out as he lowers the chair so that I am lying down. The nurse wipes my face and forehead and slowly I regain composure. It is not the last time this happens.

When it’s over, Debbie pushes him: So what is the best-case scenario?

He takes pause. Obviously most people ask for the worst-case scenario, and he was not prepared for how Debbie pitched it. His hesitation is, however, the answer; there is no best-case scenario, unless, of course, it is an infection caused by tuberculosis. I silently laugh; he actually said that! Then he goes into that professional demeanor into which all doctors go and begins to tell us that there may be a 20 percent chance that it is nothing, but an 80 percent chance that we will have something with