Cancer: Exploring YOUR Path

1992

Introduction

Why in the world would I write another self-help book about cancer? So many people’s lives, not just mine, have been touched with this challenge. So many other books are on the market, profound books, scholarly books, spiritual books, scientific books. What is different here?

For one thing, I felt a burning need to write about my experiences and acquired wisdom as a part of my own healing and growth. I recovered, and I want to share what worked for me! For another, the advice I have received and in turn passed on has made a dramatic difference in my life and the lives of fellow cancer patients. Sometimes the most helpful tip seems almost humble in terms of significance—numbing the area with ice or a spray before a needle stick. These are the things I wish I had known when I needed them and found out along the way. My degree in biology, my work as a hospice volunteer, and a high level of familiarity with medicine should have prepared me to deal with my own illness, but I was devastated! If I felt so overwhelmed, how would someone unfamiliar with medical routines and jargon feel? In sharing my experiences with you, I hope to ease your path.

In the fall of 1994 I was a normal, active, fortyish mom with three teenage children and a husband who worked long, demanding hours. I was organized, intense, and driven by to-do lists. My life was full—very full. Twinges of abdominal pain led me to the doctor, and in November 1994 I was diagnosed with ovarian cancer. I spent about a week getting various diagnostic tests before major surgery in my own town. Several weeks after the surgery, I began chemotherapy. A second look surgery (the standard of care at the time) was performed at a regional cancer center after completion of treatment. The surgery showed no sign of cancer, and I completed chemotherapy treatments by the end of 1995. In January 1997, an abnormal mammogram and a biopsy revealed breast cancer, unrelated to my ovarian cancer. A mastectomy was performed in February, followed by chemotherapy and radiation treatments.

I am delighted to be free of clinical evidence of cancer as I write—July, 2017. Being a twenty-three-year survivor of ovarian cancer and a twenty-year survivor of breast cancer is a continuing thrill. I am watched carefully by my gynecologist but I currently live a very happy life and am able to do just about anything I want to do.

Nothing gave me more hope during my cancer time than meeting survivors, both men and women. In the last twenty-three years I have been privileged to talk with hundreds of other cancer patients. Many have urged me to write down the small tips and large outlooks that have helped us. I want to help you be a survivor who can embrace life.

Certainly with cancer, as with life, to everything there is a season. The newly diagnosed woman with breast cancer who is deciding between a lumpectomy and a mastectomy is not helped by the story of the man who just had a bone marrow transplant. Although knowledge is power, too much knowledge—or the wrong kind of information when your resources are already overwhelmed—is discouraging rather than uplifting. What does help is to know you are not alone and not crazy! You need access to specific answers to the questions that are foremost on your mind right now and practical self-care tips for each stage of the journey.

I hope you will use this book in an unusual way. Rather than reading the book straight through like a story or a how-to book, use the book as a reference for those times when you have a specific area of concern. Our lives are challenged enough by the treatments that are directly before us. You don’t need to take on the worries of tomorrow that may never even need to be faced. I urge you to use this book the way you would use a conversation with a trusted friend. Seek counsel for the immediate problem and leave the long-term concerns for a time when they require attention. Take comfort from the knowledge that you will not be left without resources when you need them in the future. If you just want a quick overview of a chapter, refer to the summary points at the end of that discussion.

Because cancer is actually a unique disease in each person, and because each body and each treatment plan are different in their details, Part I of this book is divided into general concerns for cancer patients and specific treatment modalities. Part II addresses the concerns of patients who face living with cancer long term. The ultimate judge of each suggestion in the book is your own intelligence and the advice of your healing team. No comment is intended to undermine the central role your physicians must play in your health care. I have made every effort to be sure the medical comments in the book are factual. Thankfully research continues and new discoveries may make our present coping techniques obsolete.

Sit back. Relax. Grab a cup of tea or a glass of lemonade, and come and journey with me.

The Big C

In our modern world nothing so inspires fear as the word cancer. A recent survey showed that a cancer diagnosis is more feared than natural calamities such as earthquakes, accidents in a car or airplane, loss of a job, or loss of a spouse. With this in mind, and given that about one in three of us will be diagnosed with cancer sometime in our lifetime, it is not surprising that our hearts plummet to our shoes when we hear that we have cancer. Our culture sees youth, long life, good looks, and good health as universal goals. Obviously cancer, which disrupts all these goals, must be a monster to be feared.

When you hear the words The pathology report shows that you have cancer, your immediate reaction is to stop listening and to go into shock. It really doesn’t matter what else the doctor has to say. You are not interested in statistics, treatment plans, level of severity of the disease, or even the next step to take. Your life, as you knew it, is over, because from now on everything you do will be tempered with this knowledge. That is not to say that this new life will be worse. In fact, I firmly believe that this diagnosis may be one of the most powerful forces for good in your entire life. Suddenly you are at a crossroads. You can continue as if nothing has changed and push away the boogeymen that crowd your consciousness, clamoring with one shout louder than the next: Hair loss! Costs! Children! Job! Pain! and the most frightening one of all, I am going to die! Or you can begin to grapple with this opportunity for a quantum leap of perspective to a new view of life.

In point of fact, you are going to die. So is everyone else in this world. The difference is that now you see death as a personal threat rather than a vague, mysterious concept that applies to others but not you. When you hear the word cancer, it galvanizes you to respond. This book will suggest a variety of positive, helpful responses that can overcome fear and self-pity and lead you to joy.

Cancer comes in a staggering variety of kinds, stages, levels of severity, and prognoses. It is difficult to write a generic coping with cancer book. If you have been diagnosed with a skin cancer that was completely removed at the first biopsy with little chance of recurrence, you will be in a very different place from the person who is terminally ill with metastatic cancer. What does generalize, however, is the kind of treatment that is often used for cancers today, the side effects, and the coping strategies.

In Part I you will find general wellness suggestions for anyone, with a special emphasis on known ways to strengthen our immune system (the body’s own internal defense against cancer) and those that increase our sense of participation in our own good health. Following are chapters about specific treatments and their side effects, focusing on advice you need in the trenches.

Cancer patients often learn, to their surprise, that their biggest challenge is not physical but psychological. Pain can be medicated, surgery can be performed, chemotherapy can be given. The truth is that only the patient himself or herself can seek to resolve the issues of control (and lack thereof!) that are such a stressful part of the disease process. Many of us are classic type A people, busy giving directions, making plans, caring for others, and sacrificing our own needs in the process. It is profoundly humbling to realize with stark clarity that we are in control of nothing. We cannot count on force of will and years of experience to keep us safe from our own mortality.

And if we are not in control of our life (as we are not), we are most certainly not in control of the details of our lives. Part of the shock of the initial diagnosis is the realization that date books painstakingly filled with plans for the next three months of our lives will be irrelevant, maybe permanently. No longer can we say, I’ll have that project done by next Friday. Suddenly our lives are scheduled around an opening in the surgeon’s schedule, a daily radiation appointment, or a chemotherapy date. We don’t stop living our old lives, but we must now consider each action we take, each promise we make, in light of the reality that our cancer has an effect. Like the old rose-colored glasses, cancer-colored glasses shape the way we see everything. What initially seems a distortion, will, in time, become our new reality. We can choose to become stronger and healthier by far than we were.

But you are the director of this play—you are the leader of your own journey, and you have the final decision to make. You can get back to normal and return to your old routines and point of view, or you can divide your life into time B.C. (before cancer) and A.D. (after diagnosis). I am convinced that the lessons of this journey are far too important to be left behind when they are no longer needed for daily survival. The gift of this new life perspective is joy.

You have the power to choose. Are you going to be known as a person dying of cancer? Or as a person living (who just happens to have cancer)? The choice you make will touch every aspect of your future, so consider it well.

In short:

Cancer is not one disease, but many.

It is a life-changing experience.

Read Chapters 1-11 for general information (see the tips at the end of each chapter).

Read Chapters 12-21 for treatment-specific helps.

Read Part II if you are dealing with cancer as a chronic condition.

What is Cancer, Anyway?

Because the word is tossed around so frequently you may be shy about asking, "What is this disease?" It may seem everyone knows but you. Don’t be alarmed. It is possible to understand some basic facts without jumping into a sea of medical terminology that can be intimidating, to say the least.

In the beginning, every human being starts as two cells which combine—the egg from the mother and the sperm from the father. The resulting embryo grows, and as it does, the number of cells increases. Each embryonic cell splits into two offspring cells, over and over again. Not only does the number of cells increase, but the cells begin to take on particular characteristics, depending on their future site and use in the body. At birth, a baby has dozens of different cell types, each tailor-made for a specific function. These cells are organized into tissues (collections of cells with similar functions) and organs. Each organ or gland (breast, pancreas, liver, prostate, or colon) contains several cell types. It is an amazing system that works—without any action from us—to allow us to eat, run, breathe, think, circulate our blood, and reproduce. All in all, quite a huge task!

In the course of normal life, as cells grow old or are lost through friction, illness, or injury, the body replaces those cells by producing new offspring cells of the same type. An intricate system is in place at the cellular level to provide brakes for cell division, so that only as many new cells as are needed are produced. In the case of cancer, this normal braking function is not in place, so cell reproduction continues out of control.

What causes a normal cell to lose its inhibitions and become cancerous? Researchers all over the world are looking for that answer. We know some causes of cancer, but in most cases a combination of several risk factors is at work. For example, we know that smoking or smokeless tobacco causes cell damage that can lead to cancer. Some people are born with cells that already are genetically susceptible to cancer, which is why your doctor will ask you if any relatives have cancer. The chemicals called carcinogens have been tested and shown to produce cancer in animals or people. Radiation can lead to an increased risk of cancer, as evidenced in the survivors of the nuclear attacks in Japan. Sun damage can lead to skin cancer.

The body normally responds to mutant or damaged cells by destroying them. Specialized cells in the bloodstream, part of our immune system, recognize the cancer cells as foreign and attack and kill them. Unfortunately the number of cancer cells can overwhelm the system, or the cancer cells may be disguised to avoid this first line of defense.

Whatever the combination of causes, a single cell begins to divide without the usual controls. As more and more offspring cells are produced, a tumor is formed. A tumor is a collection of cancerous cells. The kind of tumor that results will depend on the initial faulty cell. For example, a basal-cell carcinoma begins with a basal cell in the skin, and a ductal carcinoma of the breast grows from a cell normally found in the ducts of the breast. In the beginning, the group of cells forming the tumor remains near the original cell. If the tumor is not removed or treated, it will continue to grow. Some tumors are benign, which means that they will never travel to distant parts of the body. They grow by pushing normal tissue away. Benign tumors can still be a problem, however, if their growth pushes on other organs.

A malignant tumor (cancer), on the other hand, grows as cancer cells actually mingle with the normal cells that surround them. It begins as a small group of cells in just one region. Doctors call this "carcinoma in situ, which means that the tumor is still in a relatively small area. When the cancer begins to show up in surrounding cells it is called invasive."

As cancerous cells continue to divide, some cells may break away from the original tumor site and travel through the body, sometimes to settle in distant areas and start new tumors there. If that happens, the patient is said to have metastatic cancer. The cancerous cells that move away from the site will carry with them the characteristics of the original faulty cell. A ductal breast cancer will continue to look, microscopically, like breast cancer even if it has traveled to the lymph nodes, brain, or liver. In fact, it is still breast cancer and is likely to be treated by chemotherapy and radiation the way the original tumor is treated. Leukemia, sometimes called cancer of the blood, is actually uncontrolled growth of certain blood cells produced in the bone marrow.

A pathologist will examine your own particular cancer to determine not only what kind of cell is involved but also how fast the cells are dividing, how far they have invaded into surrounding normal tissues, and whether or not the tumor has spread to distant parts of the body. Your tumor will be described in technical terms on your pathology report, and this accurate description is the basis for your personalized treatment regimen.

Surgery, radiation, and much chemotherapy are aimed at either killing or removing the cancerous cells. Treatments to prevent the cancer cells from multiplying can provide protection on a long-term basis. The breast cancer drugs Tamoxifen and Arimidex are examples of drugs used for this purpose.

Both radiation and chemotherapy tend to be non-specific. They work by killing cells that are in the process of dividing. In most cases the dividing cells are the cancerous ones. Some of the normal cells in the body are also constantly dividing as part of their function, for instance the cells lining the mouth and stomach, the cells of the skin, and the blood cells. The oncologist (a doctor who specializes in treating cancer) tries to design a therapy that will have the maximum effect on the cancer with the least impact on the normal cells that surround it.

Researchers hope to discover much more specific tools in the future. One promising area of research involves drugs tailor-made for each tumor to seek out only those cells. Other investigators hope to be able to use genetic testing to predict which people are at high risk of developing a particular cancer. Some potential treatments would improve the efficiency of our early warning system to detect and destroy tumor cells. Research continues into drugs that can interfere with the formation of blood vessels in tumors. Certainly this is a hopeful time to be living with cancer. We are seeing an explosion of new information and specific treatments.

In short:

Cancer refers to a group of diseases characterized by uncontrolled cell growth.

The site of the first cancerous cell determines what that cancer is called, even if the same cancer shows up in a distant part of the body.

Most cancer treatments are aimed