The Beginning of the End of My Life: My Battle with Leukemia & Other Things: My Battle with Leukemia & Other Things

By Ed Rennie

This book tells the story of what really happens when battling a very serious disease, in this case leukemia. It tells about the human reaction of the author and his wife when told by an oncologist, Mr. Rennie, you have prolymphocytic leukemia, and then being told on a cancer telephone hot-line that you may have only three months to live. It translates, in human, detailed, non-medical terms, such things as the hours spent in leather recliners receiving IVs of chemotherapy and other drugs too numerous to count, getting stuck with needles ten times to find a vein, sometimes confounding interactions with doctors, nurses, and insurance companies, and nearly shaking to death one morning in the leather recliner. It also tells some funny stories like Miss Blabbermouth in the surgeons waiting room, and the time the author mooned an oncologist. It also exposes the hopefully outdated poor bastard with cancer syndrome. Finally, it totals up some interesting things such as number of needle sticks, hours in an IV chair, CT and PET scans, bone marrow extractions, and the amount of money that the disease has cost so farbilled versus paid.

It is also a legacy book in that it tells many of the unforgettable lessons learned while growing up in a blue-collar, sports-minded neighborhood in the guts of Philadelphia. It tells about a dad with two very separate and distinct personalities, one a very bad drunk dad and one an outstanding good dad, and a perfect mother loving to the very end. It outlines the authors two older brothers and two younger sisters and their important roles in the family, a strong one to this day, all of whom volunteered to be stem-cell donors. It describes the authors wifes warmth, understanding and stoic battle alongside of her husband.

Above all, this is a good news book, one which is intended to inform as well as bring a few knowledgeable smiles to those who have been through similar experiences, and even bigger smiles to those who havent.

• Language: English
• Publisher: Xlibris US
• Release date: Nov 8, 2005
• ISBN: 9781465314840

Ed Rennie

Ed Rennie spent the first 52 years of his life in Philadelphia and its environs. He holds a degree in Engineering from Drexel University, is a Chartered Financial Analyst, a Certified Financial Planner and a Registered Professional Engineer. He started out as a mail-boy and retired 36 years later managing his company’s $11 billion pension fund. He joined PIMCO in Newport Beach immediately thereafter. He opened PIMCO’s first foreign office, in Singapore. He left PIMCO in 1998 to start his own financial planning firm, Rennie & Associates. With his three sons grown and prospering, he continues to live in Newport Beach with his wife, a school teacher.

Book preview

THE BEGINNING

OF

THE END

OF

MY LIFE

MY BATTLE WITH LEUKEMIA

&

OTHER THINGS

Ed Rennie

Copyright © 2006 by Ed Rennie.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

1-888-795-4274

www.Xlibris.com

[e-mail]

30653

Contents

Preface

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Appendix A

Appendix B

Lovingly and respectfully

dedicated

to

all of those who have been there.

Preface

There are several reasons why I decided to write this book. The first is that I want to chronicle my upcoming fight against prolymphocytic leukemia in human terms so that you, the reader, can gain some understanding of what really goes on in the fight against such a serious disease. I have no idea what is in store, and my guess is, dear reader, that you don’t either. The details, I mean the real nitty-gritty, are not a popular subject for discussion at cocktail parties or social gatherings. Even on one-on-one situations, cancer patients rarely tell all—probably because nobody really wants to hear about it, or has the time. So, dear reader, in an effort to fill in that vacant portion of your information data bank, I thought it would be useful to provide the details. The second is that I want to pass along some of the truths that I have learned over my 60 plus years, and, since I might die from this disease, now would be a good time. Third, I want to give my children and grandchildren a little more insight into what really makes me tick. I have been a stern but loving parent (yes, I spanked my kids many times and am glad I did—they turned out pretty well) and somewhat of a Spartan during my life. I felt that being firm was what I had to do to get through life with some measure of discipline and decorum. Yet, surprisingly, I have had more than my share of flat-out fun.

I am not a novice when it comes to cancer (leukemia is a cancer) and the problems it causes. My mother died of breast cancer which eventually took over her body. She was 51 years old when she first discovered a lump in her breast. What followed was the usual chemotherapy; it was very successful. But, another lump came back when she was about 58 years old and the chemotherapy process started all over again. I felt so sorry for my Mom during both of her bouts, but especially on the last one. She suffered through such severe pain for which she could find no relief. Her left arm was continually swollen; she wore an elastic stocking over the entire arm to keep it from swelling even more. But, as you might suspect, it also amplified her pain. Finally, about two weeks before her death, her doctors suggested that she have an operation at the base of the back of her neck. They described it as a rather simple procedure. They would simply cut the nerves which led to her arm and voilà—no more pain. Based on this description, she went ahead with the operation. The doctors were very wrong. Her pain went from unbearable to unbelievable and continued that way until the day she died. It is my view that the doctors knew before the operation that she had only about two weeks to live. It is also my view that no operation is simple. To this day, I have searched for the reason why they suggested this operation and went through with it. And, quite frankly, it has jaded my view of the medical profession. I will never forgive the doctors who rendered my Mom almost incoherent with pain for the last two weeks of her life. It was totally unnecessary. When my Mom died, the rest of our family consisted of my father, my two older brothers, two younger sisters and me. Shortly before her death, the doctors called and told us that she probably would not last the night. Naturally, we all went to the hospital and were with her till the end. It was the most memorable event of my life.

When I arrived, she was in a coma but was very peaceful, a state we had not seen her in for years. Her breathing was gentle

and normal. The discussion around her bed was hushed and reverent. We all loved our Mom. She had always been a warm, gracious person and a wonderful mother. She genuinely loved us and we knew it. I can not ever recall her saying «I love you» to any of us; her actions spoke it every minute of her life.

Slowly but surely, her breaths came farther apart. I remember timing them, the Engineer in me. They went from just a few seconds apart to about 15 seconds before she drew her last breath. Then they simply stopped. There were no sounds, no body movements, nothing. She simply passed away.

Throughout her bouts with cancer, we were all frustrated about how little we knew about what was going on. The doctors spooned out minute bits of information, only enough to answer our questions at the most superficial level. I hope my experience will be different. Although I am not a doctor, I am capable of understanding most things and I want to know what is going on with my body, my life. My intent is not to over-scrutinize any of my doctors’ medical actions or get in their way. I do want to know, however, how PLL affects the body, how it is affecting my body, what the treatments are, my reaction to them, and a prognosis for the future even if it is an educated guess at best.

Because I want to keep the reader’s focus on the story, the process, the feelings, the humanity, I plan to omit the names of all people involved in my treatment as well as well as the places where the treatment takes place. Also, while I will try to get all the facts scrupulously correct, I know that there will be a few errors in my recollection or understanding of things. For that, let me apologize in advance. This is not a medical text. It is a story about a human being—me.

Chapter 1

The Discovery, Preliminaries, and First Round of Chemo

I began my second career in the beginning of 1991 by accepting an offer to work for the Pacific Investment Management Company, or PIMCO, in Newport Beach, California. It is very doubtful that any of you know PIMCO which to me is always surprising. Quite simply, PIMCO is the best fixed income (bond) manager in the world. In 1996, PIMCO had acquired a few clients in the Asian region, one of whom was very large. PIMCO decided that it must have someone on site in the region to improve the day-to-day interaction with its clients as well to bring in new business. I was chosen as the person to open PIMCO’s first foreign office—in Singapore. I graciously accepted.

My wife and I moved to Singapore in October, 1996 and were there through December, 1998 when I retired (for the second time) and returned to the States. About halfway through the Singapore experience, I noticed a spongy lump on the left side of my neck. Having just recovered from a severe cold, both my wife and I thought it was some kind of lingering infection

that would eventually go away. On one of my trips back to Newport Beach, I even mentioned it to my doctor (I went to see him for a skin problem). He felt around but did not seem at all worried that it might be something serious—so neither did I. He merely noted that we should watch it to see if becomes something more.

My job in Singapore kept me very busy. Twelve hour (at least) days were normal for at least six days a week. Then there was a lot of traveling within the Asian region and Australia and five trips back to the home office in Newport Beach each year. Singapore is 15 hours ahead of the U.S. The jet lag was numbing. Since the lump did not really seem to change in any way, I was happy to forget all about it.

About mid-year 1999, the lump started to hurt a little bit. Also, it was no longer a spongy mass; it was quite well defined about the size of a large almond. There also seemed to be other much smaller lumps at the base of each ear. Finally, I decided to go to the doctor again, this time with no other purpose than evaluate my lumps.

OCTOBER 21, 1999

My family doctor and I have always had a good relationship. While dealing directly with real problems, he is not one to panic over a hangnail. Except for a few skin cancers which he removed (one was too big; he referred me to a plastic surgeon), my visits were quite infrequent. My health has always been very good. I exercise three to four times week and eat a reasonably healthy diet, much thanks to my wife. Also, before going to a doctor, I have learned from experience to give Mother Nature the first shot at curing my maladies. Most of the time, she has come through.

This visit started out with the usual pleasantries. However, when he began feeling around my lump and the neck area in general, his demeanor became quite serious. It was clear that he was worried but did his damnedest not to show it. When I asked if he thought it was cancer, he said he did not, even though there was a small chance that it could be. Cancer tumors in the neck area are generally closer to the ear near a lymph node. Mine was midway between the ear and the Adam’s apple. Then he said something that really worried me. He said that I should not be too concerned, and that there was very little chance that the lump problem was life threatening. Funny but that statement made me believe just the opposite—that it was life threatening. As events have turned out, I was right.

He felt that he must have a biopsy and that he would put me in touch with a local surgeon. He would have one of his assistants get me an appointment. He also said that a visit to an Oncologist may be necessary, but certainly later. He also scheduled me for a CT (computed tomographic, or CAT) scan of my neck at the local hospital on October 27.

The visit was a real downer. When I left the doctor’s office, I probably appeared quite normal to everyone, but believe me, I was not the same nor have I been the same since. I would have bet a dollar to a doughnut that my lump was cancer and I knew that cancer is a horrendous, debilitating, painful and most times, from my experience anyway, fatal experience. I dreaded it and now it appears that it has gotten me. Old Mr. C, the ugliest, rottenest, most brutal guy in the world now had his arm around me. Quite honestly, I doubted that he would ever let go.

When I got home, I told my wife about the doctor’s comments in the most optimistic and upbeat language I could think of. However, she saw right to the heart of the matter and like me was stunned. We both kind of consoled each other by concluding that we should not jump to conclusions. What stoics and liars we were. She knew as well as I that this was a major problem.

Late in the afternoon, I got a call from my doctor. He said that rather than wait for the biopsy, he thought it would be a good idea if I saw an Oncologist right away. He had made an appointment with one for me on November 1. Sure, I said. Now I knew I had cancer. The pattern was too clear.

OCTOBER 27

The CT Scan of my neck is today.

The hospital lobby was set up to handle a high volume of people traffic. First, a log had to be signed. Then, people in six cubicles would call the names on the log. It worked pretty well; the wait was quite short.

Naturally they took my name, address and a bunch of other stuff, but the real prize, the very first thing they asked for, was my medical insurance card. One wonders what people do without them. When I was done, I was given a little plastic card and some papers. I didn’t know what they were nor did I care. I took a seat in the lobby and waited.

A few minutes later, another person called my name and motioned for me to follow. She led me to a large room with a few chairs. Obviously, she wanted to take some of my blood. She quickly and efficiently took two vials of blood and then led me to the CT Scanner in an adjoining room. The Scanner is about an eight feet round, white metal unit with a hole in the middle through which a table (with a patient on it) passes through. The unit is only about a foot thick. I was given some unpleasant stuff to drink and then waited. Finally, a woman came into the room and positioned me lying down on the table. Once all was in order, she fired up the scanner. It sounded like a helicopter revving up. It hummed rather loudly when it reached its normal speed. The table gradually moved me into the center hole and stopped when it got to the neck area. I was then told to hold my breath a number of times while the scanner was obtaining an image. Then I relaxed and the table moved forward another notch. Except for getting a look at a technology I had never seen before, I found the total experience to be fairly routine—nothing to talk about at cocktail parties. Still, I was very happy to leave. I just hate hospitals!

NOVEMBER 1

I showed up at the Oncologist’s office right on time and went through the information game again; this time, I filled out

a questionnaire. Again, my medical insurance card was the first thing they asked for. It was a busy place. The phones kept ringing and about a half a dozen people seemed busy as hell behind the receptionist’s desk. After a short wait, a woman took a couple of vials of blood, my height, weight, blood pressure, and temperature while asking me a pot full of questions on medications, family history, etc. She then took me to another room to wait for the Oncologist. He showed up shortly thereafter and went through a thorough examination very quickly. It was obvious that he knew exactly what he was looking for. He found lumps at other places in my body but did not seem at all surprised. My spleen and kidney were somewhat enlarged. The only good news was when he said (after the old finger up the rump trick) that my prostate was okay. We talked a lot but with no definitive answers. He maintained that until the biopsy results were known, he did not want to speculate. But it was clear to me that he was in familiar territory, his specialty.

He told me that he wanted a PET (positron emission tomography) scan and another CT scan, this time of my torso and sinuses. I thought the latter rather unusual.

The meeting did not increase my optimism. While the Oncologist’s answers were all clinically correct according to what he knew at the time; they were also very guarded.

NOVEMBER 2

The Oncologist’s assistant called me at home and said that he needed some more blood and that I should go to the hospital again for another blood-draw. What could I say?

I went through the same log book, cubicle interview, waiting-room routine. No, the fact that I had done it just days before did not matter; I had to do it all again the same as the first time. This time, however, I was then led to another smaller lobby with three cubicles. My guide gave my card and papers to a cubicle person and again I was told to have a seat. About ten minutes later, a very pretty woman in blue scrubs called my name and led me to her room—the blood room. She was very

good with the needle and quite polite. Still, I felt that it was her intent to get the blood she needed and get me on my way as soon as possible. The only thing that counted was that she had to get three vials of blood each with a different colored cap. She had run out of purple caps; for some reason, they were used only on special occasions—yippee!

NOVEMBER 3

The surgeon’s office was nothing worth noting. There were about six of us in the waiting room. Really, there was only one, a blond-haired, amazingly rude yuppie, a woman. I just know she drove an SUV. For the twenty minutes she was in the room, she made pot-luck dinner arrangements on her cell-phone. She went down a list, called somebody, told them what to bring and where to bring it. She made no attempt to keep her voice down. Her behavior said that this is important, I am doing it, and the hell with anybody it offends. When she was called into the surgeon’s office, she kept talking on the cell-phone. At that point, everyone in the waiting room exploded. The woman next to me said can you believe that? Then others chimed in with similar comments of disdain. They all said that they were that close to saying something to her. Nobody did. But someone should have. We all should have. But nobody did. I will bet big Miss Blabbermouth went home thinking how much she had impressed us.

The surgeon, not one of his assistants, called me into his office. He was kind of a laid back country-looking guy about forty-five years old. He spoke slowly and easily. I suspect that he is naturally quiet. He looked over the CT scans of my neck showing me the lump he was going to sample. What worried me, however, was when he showed me all of the other smaller tumors throughout my neck and upper shoulder area. He also felt around my body and pointed out some more lumps; like the Oncologist, he did not seem surprised. To me the pieces of the puzzle were coming together.

To put a handle on exactly what inspires confidence in others is very difficult. Whatever it is, the surgeon