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CHAPTER 1

Managing the News

There is no good way to receive the news that’s the single fear beyond your worst dreams—that you have cancer. No, not somebody else, but you. This chapter will cover a few ways to handle this nightmare over the first few days, in terms of:

• Comprehending the news yourself, and communicating it to those few people who need to know as soon as possible, both for your sake, if only to be able to vocalize it, and theirs.

• Reacting to the news, and a few ideas for giving yourself a helpful perspective on the situation.

• Spreading the news, and determining how broadly and by what means to expose yourself to the “outside” world.

COMPREHENDING AND COMMUNICATING THE NEWS: AN UNEXPECTED TIDAL WAVE

Malignant Cells: Are Those the Good Ones or the Bad Ones?

It’s 4 P.M. on a Thursday afternoon, and I’m waiting for a meeting to begin in my office. The phone rings and I decide to answer it while I await my guest. I had been to see a “breast specialist” forty-eight hours earlier for a biopsy on a lump I had found on the side of my breast, but to be honest, I hadn’t thought twice about it since. He had reassured me, “It’s probably nothing. With women your age, most likely—80 percent chance—it’s just a fibrous knot.” I had no family history, knew nobody who had breast or any other cancer in my age group, so I had just put it out of my mind.

No more; actually, never again. When I answered the phone, he got straight to the point. “Hello, this is Gene Nowak. I’m sorry to tell you this, but the lab tests showed some malignant cells in your biopsy, which will require treatment.” Malignant? Are malignant cells the good ones or the bad ones? I could tell by the tone of his voice that malignancies didn’t exactly bring you the winnings of a lottery ticket, but what did he mean? Did he mean cancer? I had only known two people with cancer, and they were older relatives of mine, my grandfather and my uncle, more than ten years ago each. I knew that “lumps,” tumors, or cysts—whatever you call them—were classified as either malignant or benign, but I didn’t know which was okay and which meant cancer. It just wasn’t on my radar screen. It was irrelevant to my young, healthy, active life. Treatment? What does that mean? Is it surgery? Or does it mean lots of other medical “procedures” that are terrifying, so the doctors don’t tell you the potentially far-reaching implications of them now, because you have enough to swallow today? My head was spinning.

So, I queried, “Dr. Nowak, does this mean I have c-c-c-c-cancer?” And he responded, “Yes, unfortunately it does. Why don’t you come see me tomorrow morning when I have some time to sit with you and thoroughly discuss your alternatives.” Tomorrow morning? Can I wait until then? Will I still be alive!? I was in shock. I managed to get out, “Okay. What time?” Then I put the phone down. Now the entire room was spinning. I was shaking and my heart dropped to my stomach. I called my mother. “Mom, the biopsy is back and it shows some malignant cells.” “What???” she responded. “Mother, I have breast cancer,” I replied, deliberately pronouncing each word. And as I hung up the phone on her because those were the only words I could muster, my meeting guest was standing at my office door. I looked up and said, “I have to cancel our meeting and go home. My doctor just told me I have cancer.” And I picked up my coat to leave. Yes, malignant cells are the bad ones. And there, I had even said the “c” word three times. As I left the office, I knew that somehow my life had changed forever, but I was not yet quite sure how. All I knew was that I felt as if I had been smacked in the face by a tidal wave. Somehow, I would have to pick myself up and put myself back together again.

A NOTE FROM THE ONCOLOGIST

What’s Malignant, What’s Benign, and What’s Metastatic? Cell Growth Formation 101

Every cell in your body has a specific function. Brain cells transport neurological messages, stomach cells help digest and absorb food, and breast duct cells make milk. Occasionally, however, a change in the chromosome pattern in the DNA of a cell occurs—a “mutation.” This can be caused by an inherited defect, external factors such as radiation or environmental toxins, or a combination of the two. Usually, a mutation has no effect at all on the cell—it continues to do its job as “programmed.” Sometimes, the mutation is lethal to the cell, so the cell just dies and is washed out of your body (no big deal, we make billions of new cells every day).

Less often, the mutation leads to the transformation of the cell in such a way that it no longer performs its function (e.g., producing milk, telling your hand to move, absorbing your lunch), but rather reprograms itself to simply replicate or “clone” itself. A group of these cells is a tumor. A “benign” tumor does not invade or damage other parts of the body, while a “malignant” tumor will be fueled by and destroy surrounding tissue. In sum, a malignant breast tumor is composed of breast cells that have replicated themselves out of control, overtaking and destroying healthy cells and tissue in their wake.

If you are reading this book as someone with “early-stage” cancer, you are lucky that most likely, all the cancerous cells have remained grouped together in the original tumor site in the breast—that is, your cancer has remained “local.” Survival rates are very high for localized, early-stage cancer, and often you are “cured” by surgery alone. All the additional treatment you may undergo is “preventative” or “adjuvant,” just extra “insurance” in case microscopic cancerous cells have broken away from your tumor and moved to other parts of your body. When original “clonal” cells migrate from the breast organ to another place in your body and begin forming tumors, that is called a “metastasis.” When you hear of cancer “metastasizing,” it means that the cancer has spread to other organs—in the case of breast cancer, most commonly the lungs, bones, or liver—and is invading the healthy tissue of those organs.

There Are Many Roads Leading to “Suspicious.”

If you’re reading this book, unfortunately you may have realized that there are many roads which can lead your doctor to mutter something about “suspicious———” (fill in the blank). It could be several alternatives: a “lump” you found yourself, either intentionally or accidentally; a “thickening” that your doctor found upon examination; or a mammogram where something caught the doctor’s attention. Whatever the pathway there, the next step is typically a biopsy. You must understand the role of the biopsy, and what information you can glean from it before considering your surgical options, if that is the appropriate route. Remember, early-stage cancer is very treatable, with extremely high survival rates. In a strange sort of way, think of yourself as lucky that your doctor was suspicious. It may have saved your life.

A NOTE FROM THE SURGEONS

A Biopsy Is a Biopsy . . . or Is It?

For those of you just beginning the breast cancer journey, you need to be clear about exactly what a biopsy can and can not tell you. While there are variations on each, there are essentially four types of biopsies, which are increasingly invasive, but also increasingly exacting in terms of diagnosis. However, other than a complete surgical biopsy which removes the entire mass, biopsy results are not 100% definitive. Biopsy types are:

1. Fine needle aspiration (FNA). Conducted in the surgeon’s office, this involves inserting a needle into a mass that can be felt and removing representative cells. This is not felt to be a definitive diagnosis, but is still fairly accurate.

2. Core biopsy. Conducted in the radiologist’s office, this uses a sonogram to identify the mass and then a wide bore needle to remove a core of tissue. Definitive surgical decisions can be made on the basis of a core biopsy diagnosis because it provides a bigger sample than FNA.

3. Stereotactic core biopsy. Conducted in the radiologist’s office, this uses a mammogram to detect calcifications or architectural distortions that are not able to be felt. This also takes a core of tissue and uses a special table placing the patient facedown. Definitive surgical decisions can be made on the basis of a stereotactic core biopsy.

4. Excisional (open) biopsy. Conducted in the operating room using local anesthesia and intravenous sedation, this involves removal of a mass or calcifications that are not technically amenable to either core biopsy or stereotactic biopsy (deep or close to the chest wall, directly behind the nipple, or in patients who cannot be positioned for stereotactic biopsy due to arthritis or other illness).

Regardless of which type of biopsy you had, if there is any debate about the interpretation of the results, consider going to a more extensive procedure. A little sacrifice now of time, pain, and even tissue may save you a lot later.

Getting Your Lab Report . . . like Remembering Where You Were When JFK Was Shot.

Just accept that you will never forget the moment your doctor received the results of your lab test, and had to break the news to you. Just as every American adult has a vivid snapshot branded in their memory of exactly where they were and what they were doing when they heard the news that John F. Kennedy was shot, so will you have an indelible imprint of where you were and how you were told that you have cancer. Just as JFK’s assassination became a significant moment in American history, your news will become a part of your heritage, your strength, who you are. No matter how much you want to rewind the clock and erase it, you can’t. Cancer is now part of your history.

A Dose of Quiet Time Is the Best Medicine for the Ordeal Ahead.

No matter what your point of origin, be it your family physician, your gynecologist, a breast specialist, or even a dermatologist, if you are reading this book, all roads have led you to this shocking crossroads. Like me, you now have cancer as a relevant term in your life—for the rest of it! However, as you will see throughout this book, this news is not a destination, or an end, but the beginning of a new journey—a journey that will redefine who you are and what you want from life, a journey that has obstacles, but also high points, and a journey that many others will share with you and help you endure. However, in the immediate aftermath of receiving your diagnosis, allow yourself some moments alone to just sit and let it sink in as much as it can. Maybe you already have by the time you’re reading this. But if you haven’t, get away to places that make you feel good. If you like art, go to a gallery or museum. If you like the outdoors, go for a hike or walk in the nearest park. Don’t necessarily do anything yet. Look at the surroundings you’ve chosen, and realize how little you actually see on a daily basis, until news like this makes you wake up to the details of the world around you. Realize how lucky you are just to be sitting there. These moments alone will allow you to get your head clear enough to understand what is happening to you, determine who you need to share your news with, in what order, how, and when. And if you haven’t already, use some of this time to make lists of all the questions you want to ask your doctor and all the people who can possibly help you and might know something about your new disease.

A Three-Phase Plan for Letting the News Sink in.

The news that you have breast cancer cannot be comprehended in a single dose. It’s something that may happen in phases over several days—easing into your consciousness, and understanding that, “Yes, they are talking about me.” And while you will come to understand that fact, it will actually take months, perhaps years, to fully comprehend the implications of that little piece of news. So, after that initial life-changing phone call from your doctor, here’s a simple three-phase plan that I used to handle myself in the transition from healthy person to breast cancer patient (at least temporarily):

Phase 1. Building Your Inner Circle: A State of Shock as the Means to Maintaining Composure.

First, determine who in your immediate world needs to know about this right away, if only to keep you from crumbling emotionally. Your list might include traditional family members such as your spouse/significant other, children, siblings and parents. But think carefully. Your traditional family may not be as much support as you need, for any number of reasons—they won’t handle the news well themselves, they are preoccupied with illnesses or life challenges of their own, they are geographically distant, etc. Perhaps there are a few other people who should be included in this “inner circle” of support, people who you know will provide that rock-solid pillar of emotional stability that you’ll need for the next several months. Consider them surrogate family. Choose about four or five people. See them in person, if possible, so they can see you, touch you, and know that you are the same person. Otherwise call them. But regardless of how you contact them, please soften the shock a bit by prefacing your news with a comment like, “I have something to tell you, but please hear this first . . . I will be fine . . .”

Despite vocalizing your news, you might still be in shock and not believe this is happening to you. Like me, you might not have even shed one tear yet. That’s okay, you’re numb. (Or maybe you have. And that’s okay too.) Even as I tried to sleep that first night, I didn’t cry. But I did lie awake all night, shivering so uncontrollably that my teeth chattered, out of terror, fear, and uncertainty of what lay ahead....

Phase 2. First Cry, See Your Doctor . . . Then Do Something Spectacular.

As the numbness wears off and reality sets in, you might start to cry, and have moments when you just can’t stop. That is absolutely normal. After a while, you’ll feel the need to pull yourself together. I found that two things helped put a stop to my crying. First, have the consultation with your doctor to identify all the issues you need to address, and determine the options you have to remove the cancer. Bring someone from your “inner circle” with you to take notes on what the doctor recommends. In your state of mind, you might be listening, but you won’t hear, let alone comprehend, everything.

By just knowing that there are a lot of options for you to eradicate this cancer from your body and your life, you will feel much better. The doctor might discuss lumpectomy versus mastectomy, radiation, chemotherapy, even hormone therapy. Yes, it is terrifying, but it also can provide a strange sense of calm. Although I had never been in a hospital in my entire life—except the day I was born—I felt great relief knowing that soon I would have surgery to get the cancer out of me. In fact, the surgery was scheduled for a few weeks later, but I was so panicked that the cancer was multiplying exponentially by the minute that I asked the doctor to move the surgery date sooner. Eight days later, I had a lumpectomy and axillary lymph node dissection. (See the discussion in Chapter 3, “Deciding on Surgery.”)

The second approach is to do something that absorbs all of your concentration. After a doctor’s visit that airs all the issues you’ll have to address over the next several months, do something spectacular, something completely out of the ordinary of your daily routine. Do something that takes your full attention, that raises others’ expectations of you, that has absolutely nothing to do with your current trauma. In my case, I had to go to work and, in fact, had scheduled interviews with senior executives for a book project we were deep in the midst of. So I walked out of the doctor’s office, wiped my tears dry yet one more time, and pulled out the company’s annual report on the way to their offices. After all, I needed to know what the company did before I could intelligently interview! I had to be “on” and could not re-schedule. So, with eyes as pink as the magenta suit I was wearing that day, I conducted my interviews, just as if life were “normal.”

If you are fortunate enough not to have to go to work, then do something that will make you smile, but make sure you are around other people to distract you. Take your children to an amusement park. Have an extra-long exercise session at your gym to make yourself feel really good. Work on any community activities you might be involved in that make you feel good about helping others less fortunate than you. Just don’t think about yourself for the time being.

Phase 3. Expand Your Inner Circle: Break the News, Be Surprised.

By the time you move into the third phase, you may be composed enough to start breaking your news to a wider circle of people. While you might worry that telling others will make you feel like a leper, believe it or not, it will make you feel better. I decided to expand my initial inner circle by calling my six closest friends in the world, regardless of where they lived, to tell them the news, but also tell them that I was going to really need them to be there for me during the coming months. Guess what? Of this small sampling of women, women whom I thought I knew so well, each had an acquaintance or coworker who had been through breast cancer and was completely fine! My own spontaneous sample had a survival rate of 100 percent! They even told inspirational stories of women who had gone on to marry, have children, start new careers, etc. This was great! Not only did I no longer feel all alone in the world, but I learned very early that plenty of women do get through this experience (hence, my title), and that my friends would be there to help me.

Determine who else you might want to tell your news personally rather than having them hear indirectly by word-of-mouth. However, make sure that these are people who will be supportive, optimistic, and hopeful. Let them know that, as part of your inner circle, they will be counted on to play several roles for you over the coming months. (See page 3, “Communicating the News.”) You don’t need to pick anyone else up off the floor right now.

It’s Only Two Easy Syllables, but It Might Take Some Time to Be Able to Say the “C” Word.

The word cancer is everywhere in our society. On a nearly daily basis, the news bombards us. We are informed of some new medical treatment for some type of cancer, made aware of some fundraising effort for cancer research, or reminded of yet someone else who has been diagnosed or passed away from cancer. But when the word becomes personally attached to your own individual identity, it becomes much more difficult to verbalize. It may take you several weeks. I started by explaining, “I have malignant cells,” then graduated to admitting, “I have a hard time saying the c-word, but I need to have surgery,” and finally was able to say, “I have breast cancer, and need to go through treatment.” Find your own comfort level over time with divulging the “c” word.

How Can I Be Sick? I Feel Great! A Bit of Healthy Denial Is Just Fine.

Your initial response to the doctor’s unfortunate news might be exactly this. Sorry, cancer doesn’t discriminate, but your response is very typical—denial. You want to deny that cancer could find its way into your busy, fulfilling life, when you are so energetic and strong and feel great. You may have never even had any other “female” health conditions before, so this must be a mistake. Unfortunately, breast cancer doesn’t provide any warning until the tumor appears, and even then is not generally associated with any pain or discomfort. So, you refuse to believe that this could be happening to you.

Denial is the first stage of the grieving process of denial, anger, and eventual acceptance. It is a natural human emotional response, and must be balanced between constructive and destructive aspects. Use your denial in constructive ways to keep your attitude positive, to keep your life as “normal” as possible, to refuse to believe that you might die. You are entitled to a bit of healthy denial, and inevitably will move through it to accept it in your own time frame and on your own terms. It is a loss to be grieved—a perceived loss of femininity and sexuality, a loss of a sense of invincibility and immortality, and in the case of mastectomies, a physical loss of part of your body. Nobody can deny you the entitlement to grieve and experience a sense that your own body has betrayed you. However, don’t let it become destructive. Don’t let denial paralyze you to the extent that you don’t seek out advice regarding treatment and hopeful eradication of this disease from your body as soon as possible! And don’t hesitate to seek out support groups even if you think you’re really “fine” with it.

Come Back Next Month. The Timing Here Is Really Terrible.

Sorry, there’s never a good time for cancer to enter your life. You might even jump into high gear, worrying about how you’re ever going to fit it into your already hectic schedule. Work is crazy, your kids never get enough of your time, your parents complain they never see you, and you rarely have an adult conversation with your spouse these days. Save yourself the worry. This is the one nonnegotiable in your schedule over the next six to twelve months. Accept the fact that cancer will take its place front and center in the midst of your hectic schedule. And hopefully, all those people placing all those demands on you will rise to the occasion and help you manage that schedule.

REACTING TO THE NEWS: IT’S ALL IN YOUR ATTITUDE

You Didn’t Cause This . . . and If You’ve Got to Get One of the C’s . . .

Let’s make one thing clear. No matter what your lifestyle, nutritional habits, exercise regime, family history, or anything else that you’ve read about that might contribute to cancer, there is nothing you did that caused this. You did not ask for it. It’s just one of those mysteries in life that happened. And while you might consider yourself one of the unlucky one-in-eight women that gets breast cancer, it’s not as if the other seven escape “home free.” There is not one person in this world who will escape having to deal with some type of disease in the course of his or her life. So, the other seven will end up with something else. This cheery idea was pointed out to me by one of my doctors as an attempt at encouragement in one of my tearier moments. Furthermore, as one of my friends rationalized to me, “If you’ve got to get one of the C’s, it’s not a bad one to get . . . because it’s completely treatable!”

Paternal Genetics: Does He or Doesn’t He?

In your quest to come to terms with why you got breast cancer, you’ll hear many different opinions on the role of genetics. Is breast cancer hereditary? From whom? While there seems to be consensus and a predominant focus that a history of breast cancer on your maternal side—grandmother, mother, sisters, aunts—places you in a higher risk category, paternal genetics can play an equal role in determining your predisposition to breast cancer. Look for patterns in your father’s relatives as well.

Ten Leading Risk Factors

It seems like everything you do, or don’t do, eat, or don’t eat, or even breathe in can cause cancer these days. Until now, you probably haven’t organized your life around how to avoid cancer, and you might have had no risk factors, but you still got it anyway. So, going forward you might want to be aware of the risk factors that you can control so you can manage them to prevent a new breast cancer:

Some Basic Factors You Just Can’t Change

1. Family history. If it’s in your genes, there’s not much you can do, except regular monitoring to catch any recurrences or cancers in the other breast in the earliest stages. In the extreme, you might consider prophylactic mastectomy if you carry the genes (see the discussion in Chapter 8, “Five-Year Follow-Up Visits” for overview of genetic testing).

2. Early menstruation or late menopause. If you started menstruating before age 12, or went through menopause after 55, the many years of estrogen surges from your monthly cycle may trigger breast cancer, as some types grow and flourish on estrogen.

3. Childbirth after age 30 or no children. Hopefully you haven’t done your family planning around whether you might get breast cancer, as there are much more important decisions around bringing a child into this world. But late childbearing or not having children is a risk factor because of the continuous exposure to monthly estrogen cycles, without an interruption for pregnancy.

4. Exposure to radiation. If you’ve ever received any form of radiation to the chest area before age 30, say for Hodgkin’s disease, you are more susceptible to breast cancer.

5. Use of estrogen / progesterone. This increases risk, mostly for lobular cancer.

And Those Over Which You Have Control

6. Smoking. If you ever have, just don’t, not ever again. You want your life—not breast, lung, or many other types of cancer. Enough said.

7. Obesity. Fat cells produce estrogen, a potential nutrient source for breast cancer cells. If you’ve always wanted that lean, healthy body, now is the time to make it happen, not just for cosmetic, but for very real health reasons.

8. High-fat diet. Again, fat consumption boosts estrogen, and the last thing you need after breast cancer is more estrogen. So, stick to a diet low in saturated fats (some monounsaturated fats are fine). You’ll also prevent obesity (see the discussion in Chapter 9, “Nutrition: Looking at Food in an Entirely Different Way”).

9. Lack of exercise. You’ve been bombarded, ad nauseam, by information on the health benefits of exercise. So you don’t need me to tell you any more about how regular aerobic exercise strengthens the immune system to rid your body of bad cells before they turn cancerous (yes, everyone has bad cells; cancer just forms when your immune system can’t eliminate them from your body properly). But I will tell you that a review in the Journal of the NCI (1/21/98) evaluated a range of studies on the effects of exercise on breast cancer, and reaffirmed its risk-reducing effect in healthy women of all ages.

10. Alcohol. There is a growing body of evidence linking alcohol intake to breast cancer, especially heavy use.

Remember, You Are Not a “Cancer Patient.”

“You are not a cancer patient. You are most likely a healthy person who has had some cancer that was removed and are now fine. Remember that. There is a difference.” These were the first words of the first oncologist I went to visit for an opinion. While I didn’t ultimately choose him for treatment, I found this extraordinarily helpful mental model to keep me positive and focused. According to him, “cancer patients” are those unfortunate people who must manage cancer until it ends their life at some point. With early-stage breast cancer, the theory is that most women are cured from surgery alone, and they will go on to have long, healthy lives. However, any and all the follow-up treatment recommended is purely “insurance”—or “adjuvant” treatment—so you will hopefully never have to become a “cancer patient.”

You Haven’t Been Robbed of Your Youth. You’ve Been Granted Incremental Wisdom.

If, like me, you are young—I was just 35 when diagnosed—one of the emotions you might experience in the initial days of coming to accept your new reality is a feeling that you’ve been robbed of your youth. Yes, rationally you understand all the doctors’ optimism about 90+ percent survival rates for early-stage diagnoses, and you fundamentally believe that you will grow old and live a full life. However, on an emotional level you can’t help but think that you have been robbed of your youth, your invincibility. Your body, which you have always taken for granted and considered immortal, has betrayed you. From now on, you must defer to it, honor it, even make promises and negotiate with it. Now you will always remember what it feels like to have had a brush with mortality. Whenever you are contemplating a major life event—your wedding, the birth of your child, watching your children grow up, etc.—never again will you be able to ignore that little voice in the very back of your mind whispering, “Will I be alive to experience it?”

Instead of feeling shortchanged, robbed of your youth, consider that you’ve been granted a premature wisdom and perspective on life that many women twenty to thirty years your senior haven’t grasped yet. You will cherish and appreciate those special life events even more, and remember where they rank in your ever-competing life priorities. It’s a gift. Use it wisely. And don’t ever lose it.

It’s a Very Tough Way to Find Out You Don’t Control the World.

It’s your diagnosis alone, and try as you might, nobody else’s. As many times as you might say, “No, this isn’t happening to me,” it’s not going to walk away from you anytime soon. Just accept it. Then get going at gathering information and making decisions regarding your treatment plan. That, at least, is something you can control. No matter what your occupation, if you work, you get paid every day for making decisions. So, make decisions about your own life with consideration, courage, and conviction. At least you’ll feel like you’re back in charge.

It’s Okay to Have an Occasional Panic Attack.

By the end of the first month into this whole breast cancer ordeal, you will probably be so sick of people reminding you that “Your attitude is everything.... Stay positive and you’ll stay well.” How do they know?!?! Since when did they become experts, especially those people who panic when they break a fingernail? They don’t have a magic crystal ball. You feel like telling them to go jump in a lake and leave you to sulk or panic on occasion. That’s just fine; it’s perfectly okay. If you didn’t have occasional moments of panic about not reaching your next birthday, not being around to see your children off to college, not enjoying your retirement days, you wouldn’t be normal. You might even still be in the denial stage of coming to accept your condition.

Acceptance: It’s Amazing How Your Mind Comes to Terms with Reality.

You may experience a slow evolution to acceptance of whatever treatments are necessary to deal with your specific cancer by a unique process of bargaining with yourself. The good news is you always win, and you also come to accept issues when you are emotionally ready to handle them.

I began with an attitude of, “Okay, I want to do surgery as fast as possible, but we caught it early so I won’t need anything else, except maybe a little radiation.” Then, following surgery, when my doctors started discussing adjuvant chemotherapy because of the size of my tumor and aggressiveness of the cell types, I conceded, “All right, just a little chemo, but nothing too toxic. Make sure I don’t lose my hair.” And finally, after several opinions from oncologists and the realization and acceptance that this is a serious disease that could kill me if I don’t treat it properly, my attitude became, “Who cares about my hair, I want my life! Bring in the big guns! Give me the most aggressive chemo you have . . . I’m tough, I can handle it. And by the way, what else do you have in your arsenal that I can do to make sure that this never, ever comes back ? ! ? !”

A Whole New Meaning to One Day at a Time.

If you’re reading this book, you are probably a planner, an organizer, just like me. You’ve often been advised not to worry about the future, just to take one day at a time as it comes. Guess what? It’s true. With cancer, that rush to get to tomorrow comes to a screeching halt. Sure you want to get all this surgery and treatment stuff over with and behind you because you might just not feel that great. But beyond that, just savoring today brings a whole new perspective to that old adage. Because you’ll never know what tomorrow will bring—either good or bad.

SPREADING THE NEWS: EXPOSING YOURSELF TO THE WORLD

Okay, so you’ve now broken the news to your cherished “inner circle” as part of the means to help you comprehend the magnitude of this news. So what’s next? How do you spread—or not spread, if that’s your choice—the news to a broader group of people. To whom do you turn first? Who needs to know directly from you? How do you control the message so the rumor mill doesn’t run rampant? Do you even care? How do you manage this entire process without feeling an incredible sense of exposure and vulnerability?

Enlist Your Inner Circle . . . Assign Roles.

In additional to enlisting your inner circle for emotional support (that goes without saying, it’s why you chose them), you also want to communicate with them about the very practical, logistical things you might need help with over the next few months. Based on how you think each person might be most helpful, you can assign roles to help you. Some might have the right temperament to accompany you to doctor appointments and consultations, helping to take notes, listening for you when you really aren’t hearing, and managing medical records to alleviate you of such administrative headaches. Others might contribute by helping with research and gathering information, which may simultaneously lower their anxiety levels, as they become more educated and informed. And others may be best suited to helping to manage your family and life chores, including babysitting, running errands, housekeeping, cooking, etc.

Tread Lightly on Your Partner. . . . He May Be on Overload Right Now.

If your spouse or significant other has momentary lapses of unexplainable or strange behavior, cut him a bit of slack right now. He’s acting double, even triple, duty right now, trying to deal with his own emotions and fears of losing you, while also needing to appear strong and supportive of you. Furthermore, if you have children who need caretaking, he also may be taking on a greater share of the burden of handling both their reactions and schedules to lighten the load on you. If at times, he needs to withdraw, get angry, not seem as supportive as possible, let him. Just make sure you keep your communications channels open, to let him acknowledge and validate his feelings. Just as you are entitled to momentary respites from playing the hero, so is he.

Young Kids Are Amazingly Intuitive. Don’t Hide . . .

If you have young children at home, they will probably know something is wrong long before you say a word to them. Kids are amazingly intuitive and will just know, so don’t hide. Most experts would advise you to be candid and straightforward with information, but not too clinical. Don’t explain more than they need to know. Try to be reassuring, but also realistic as they will see straight through sugar-coated stories by the tone of your voice and your behavior and that of other adults around. Since a sense of security is very important to children, try to enlist family members or friends whom they are comfortable with to help ensure their routine stays normal, and your need for medical care disrupts them as little as possible.

However, in the end, you know your children best—their levels of perception, comprehension, and development—and are in the best position to gauge what they can handle. Cancer is such a delicate issue that you might consider enlisting professional expertise through this initial phase. Ask your doctors to refer you to appropriate social workers and/or child psychologists.

. . . But Older Kids May Be More Difficult to Predict.

The older your children are, the less likely you’ll be able to hide anything from them. But the more difficult it may be to predict their response to your illness. They may be a terrific source of support and comfort, both logistically and emotionally. Or they may retreat, reeling from having their world turned upside down as you—their source of nurturing and comfort—now need to be nurtured and comforted. Furthermore, the reaction of daughters often becomes more complicated, as they may experience their own fears or anxieties about the possibly hereditary nature of this disease and may feel guilt and/or resentment that they are unsure how to contend with.

Help Your Friends Along.... They May Be Waiting for “Clues” from You.

Some of your friends will immediately move into helpful mode and instinctually know what to do to help you. Others, however, may either be paralyzed by the fear of losing you, or simply awkward and embarrassed, and will not know what to do until you offer specific suggestions. And still others will be unable to deal with your diagnosis due to their own insecurities and fears of mortality and will disappear, either temporarily or permanently. You just have to remind yourself that other people’s behavior really has less to do with the strength of your friendship than with that individual’s own psychological constitution and prior experience with cancer (e.g., they may be terrified because they lost a loved one to cancer). So, for those who do stay in the picture but don’t know how to help, tell them. Start with something small, such as picking up a few groceries for you on their way home because you might be too tired. Gauge their responsiveness, and determine whether to ask for bigger favors, such as accompanying you to chemotherapy.

If you haven’t heard from people that you’d expect to, call them. Just hearing your voice sounding normal will put them at ease, and also break the ice in the event that they’ve felt awkward about calling you.

Be Prepared for Stupid Responses from Smart People. (They Really Don’t Mean It.)

It’s not that people intentionally try to say stupid things. It’s just that most people—even those who are highly intelligent and articulate—have no idea how to respond to the statement, “I have breast cancer.” Not only does the word “cancer” equate to mortality, but the word “breast” equates with sexuality in our society. What a double whammy. Most people don’t know whether to feel awkward, embarrassed, pitying, comforting, or what. Just as you felt an entire range of emotions upon your diagnosis, they will need a minute to collect their thoughts and respond as best they know how. However, you’ll find that most people don’t collect their thoughts first, so you’ll get some awfully stupid responses. Three of my favorites follow (you’ll soon have your own list . . . it should make you smile):

• From an acquaintance I hadn’t spoken to in a while, who called to ask me to lunch on the day of my first chemotherapy appointment: In response to my statement, “Unfortunately, today I start chemotherapy treatment for breast cancer,” he said, “Oh, so I guess you’re not available for lunch.” No questions about what happened, how I’m doing, or what he might do to help me. He was probably just so overwhelmed, he couldn’t respond.

• From a coworker with whom I often lamented that my extensive travel schedule was running me down: “So, do you think the stress of the job and being on airplanes too much caused this?” A naïve, uninformed search for some explanation, some reason how this could happen to someone as young and healthy as I.

• From someone I had dated, when I serendipitously ran into him (and I knew that he had heard about me through friends but hadn’t contacted me): “Oh, hi, Deb, new ‘do’?” My reply: “No,——[I’ll spare you his name], it’s a wig, but see, I’m actually getting my hair back underneath!” as I pulled the elastic of my wig away from my scalp and watched the blood drain from his face. I’d never seen him speechless before.

How to respond to stupid comments? Just move beyond them, ignore them. Instead, let the person know that you feel lucky that it’s been caught early, that your prognosis is very good, and that you will be fine. Your optimism and attitude will make them more comfortable (plus save them later embarrassment when, in retrospect, they realize how stupid they were). And besides, the critical issue is not how they respond upon the initial shock of the news, but about how they treat you through your entire experience. You might find that people initially eager to help fall by the wayside, while others, who may be shell-shocked at first, are there for the long haul.

Surround Yourself with Only Positive-Energy People.

While there are those that will say stupid things at first, they will accept the shock and move on to be helpful to you in their own ways. However, there are those who never get over the shock, those who can’t handle your diagnosis. They’re worried, upset, and the negative energy of their mere presence brings you down. “Hey, remember, I’m the one with cancer!” you want to shake them and scream. Guess what? It’s their problem, not yours, and if they can’t handle it, get them out of your life. You’ve got enough to handle right now, other than worrying about other people’s emotions. How to do it? One woman I met wrote a letter to her sister, who was driving her crazy because she was living out her own anxieties about the disease and what it might do to their family. She simply wrote that until her sister could control herself and focus on helping the situation, she’d appreciate it if she stayed away. It’s a pretty tough way to do it, but consider the experience a filtering mechanism to get the clutter out of your life. Surround yourself with only positive-energy people who will uplift you, people who will be there for you—unconditionally.

Assign a Weekly Medical “Reporter.” It Lets You Focus on More Newsworthy Matters.

Once the news spreads of your diagnosis, you will get so many calls that you’ll begin to think that AT&T has rerouted their central switchboard to you. It’s all very flattering as you realize just how many people in the world care about you and love you, and they are calling to offer support in any way they can. But it can also be very exhausting, both physically and emotionally. Physically, you simply might not have the energy to return all those phone calls, and tell everyone how you are that day. You might just want to rest. Emotionally, you’d rather jump off a bridge than tell one more person how much arm mobility you’ve regained post-surgery or how low your white blood counts were that week. Eventually, you’ll get confused, and won’t even remember who you told what. Furthermore, it will continue from the moment of diagnosis through to the day you remove your wig once your hair has grown back (if you lose it). So what to do? Some people find it helpful, especially early on, to assign a weekly medical “reporter,” someone you appoint on a rotating basis. This person is the point person to whom you can refer anyone who wants to know about your medical status. That way, you are freed from “reporting” your status repeatedly, and can turn your discussions to more interesting matters of what else is going on in your and your callers’ lives.

Have Several Versions of Your Story: The Hollywood Fluff, the Reader’s Digest Condensed Version, and the Great American Novel.

Not everybody needs to know your exact situation. But you probably need some people you can tell every nitty-gritty detail to help you cope with it. So you might determine who needs to know what as follows:

• Hollywood fluff . For those on the periphery of your life, those you see only sporadically, your party line might be something like, “Oh, I had some surgery and I’ve been recovering, but I’ll be fine.” You’re not lying, but simply glossing over some of the unpleasant details, and focusing on the hopefully happy ending, just like many Hollywood movies. I used this one when I attended a school reunion just three weeks after surgery, and the week before I started chemotherapy. When people I hadn’t seen in five years tried to hug me, I politely replied, “Please don’t hug me. I recently had surgery around my arm, and am still in some pain.” Their response was quite often, “Really? You look terrific for just having had surgery!” It made me smile.

• Reader’s Digest condensed version. This is the right take for casual friends and relatives with whom you are friendly but not too close. These are people you see on a regular basis, who need to know what you’ve been through in order not to expect too much from you during this time. You just won’t be your normal energetic, dependable self. However, there might be reason to be more guarded with this group, so stick to the facts, and focus on making these people comfortable that you are handling this well and will soon be back to normal. Your employer and coworkers probably fall into this category.

• Great American novel. Reserve the nitty-gritty details of what’s happening to your body for your inner circle, for those few people who are living this day in, day out with you. These are the individuals who you know are strong enough to handle it and be there for you for the long haul. They’re also the ones who will tell you candidly if they need to step away from the situation temporarily. Often, family members, especially spouses, are so emotionally involved in your cancer that they need space from time to time. Let them breathe. They’ll be back when you need them.

Take the Lead at Work: Shatter in the Workplace the Three Myths of Cancer.

Take a leading, proactive role at work from Day One. You will not only become a role model for your ability to manage your way through any crisis, be it work or cancer, but you will provide a valuable education for those with preconceived myths about cancer patients at work. The three most frequent myths—two of which extend far beyond the workplace—are:

• Cancer is a death sentence. Since people have so many misconceptions about survival statistics, they may inadvertently take a patronizing attitude toward you, trying to shield you from excess work, office politics, or whatever else. They may even pity you. While intentions may be good, they are often founded on false fears. Besides, it should be up to you to determine how much work you can handle right now, what issues you want to address, and what protection you might need. In fact, since work may be one of the few sources of stability in your life right now, it might be very unsettling to feel like you are being left out of the loop on what may be important issues and decisions.

• Cancer is contagious. People may avoid you based on their own irrational fears of contracting the disease. Interact with such people on relevant work issues as appropriate, and reinforce the positive aspects of how you can work together. You might be so helpful to them that they’ll just forget their fears and understand that cancer is not contagious.

• Cancer is a drain on productivity and efficiency. The pervasive myth is that cancer patients are a drain on short-term productivity (e.g., taking a lot of sick days) and that over the longer term they are not good “investments” to train, promote, and develop. The reality is that cancer patients and survivors are often more productive and work harder, because they have clarity on what’s important in their lives, and how work fits into those priorities. They focus on the essential elements of getting their jobs done, particularly when trying to balance the job demands with treatment schedules.

Discrimination based on such false perceptions can be very subtle, but very real, so by maintaining your composure, a positive attitude, and a focus on the business issues at hand, you will demonstrate your strength, reinforce your capabilities, and provide information and awareness that will alleviate coworkers’ concerns. Furthermore, you will hopefully help to make the workplace a bit more comfortable for the one out of two men, and one out of three women who will be diagnosed with some type of cancer in this century.

The Only Work Pressure on You Is You. With Planning, Everyone Else Will Understand.

Although you may want to help shatter the myths of cancer in the workplace, if you need a break, give yourself a break. Let them worry about the business, while you worry about yourself for the near future. Don’t put any undue pressure on yourself to perform right now. After all, as much as you want to be strong and a role model at work, you do have a life-threatening disease (even though you try not to remind yourself of this fact). Your employer survived just fine before you arrived, so they’ll do just fine without you for a short time, if that’s what you want (unless you’re self-employed, and then, hopefully, you’ve hired good people).

There are many ways to give yourself a break if you need it. With a bit of planning to make your employer comfortable that your work will be covered, you might arrange for:

• A leave of absence. If you work for a company with more than fifty employees, your employer is legally obligated to grant you up to twelve weeks of unpaid leave under the Family Medical Leave Act (FMLA) of 1993. (See discussion in Chapter 7, “Balancing Work.”) While this information may not be actively promoted by your HR department, they are required by law to alert you of it should you inform them of your need for medical treatment. Determine if you have other sources of income so that you might be able to afford time away.

• Revised schedule or reduced working hours. Some type of part-time arrangement; fewer hours per day or less than five days per week. While part-time status is not mandated by FMLA or ADA, you might negotiate this with your employer.

• Short-term disability benefits. Depending on your employer’s benefit structure, you may be eligible for short-term disability, which provides you with a percentage of your salary for a defined period of leave, usually between six and twelve weeks.

• Less travel. Reducing any work-required travel will lessen fatigue and enable you to keep treatment appointments (remember, these are nonnegotiable).

• Delegate projects. Lean on your coworkers and staff a bit more than you might normally—you’ll be surprised at how willing they will be to step in and rise to the occasion.

Of course, your ability to continue to keep a “normal” work schedule throughout will depend on your physical energy level. And if you take time off, you might even get a “welcome back” party. Now you know how much you were missed!

Strength Does Not Equal “No Tears.”

So, up to now, you’ve been the heroic role model of an exemplary patient at work. What happens when you just can’t maintain that façade any longer, on those days you feel like your world is crumbling around you? What to do? Permit yourself to cry at work; just do it in a quiet moment behind closed doors. As much as we hate to admit it, the typical workplace is very male-oriented, which means “No Tears,” but you wouldn’t be human—or at least female—if you couldn’t show a bit of vulnerability on occasion. You might even ask for extra help now and you deserve it. After all, if you’ve been a good performer, the company should consider itself lucky to have an employee so dedicated as you that you’re worried about disrupting the workplace with your emotions.

Activate Your Civil Rights

The decision about how, when, and if to tell your employer about your cancer diagnosis is often shrouded in a dense cloud of emotions, which include fear, anxiety, and relief, as well as some very practical concerns about job security and your right to privacy. Furthermore, whom do you tell? Your boss, the human resources officers, or only a trusted coworker who might help manage some of your workload should you need relief? Relax a bit. If you choose to be candid and straightforward about your diagnosis, you will “activate” an umbrella of civil rights—a group of federal and state laws that offer protection for your position and provide you with “reasonable” accommodations if you are able to perform the essential functions of your position, should you need to adjust your work schedule to get through your cancer experience.

The two most relevant programs include the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA). (See Chapter 7, “Balancing Work,” for details on each program.) Just imagine that you have bundles of these rights burning holes in your pockets, screaming to be pulled out and utilized to protect you. The few simple requirements? Your employer must be aware and knowledgeable of your condition, and you must be able to perform the essential functions of your position. Begin an ongoing, nonconfrontational dialogue by officially communicating to your HR department as soon as you realize you might want or need time off from work (basic surgery will require at least some time off). Provide just the basic facts about your situation. Don’t volunteer too much information or detail, as you never know how information can be misconstrued and where it may end up. For example, if you are seeing a social worker or psychiatrist to deal with the emotional impact on you and your family, your employer only needs to know that you may need to miss work for regular medical appointments associated with your cancer. Document any conversations and commitments your employer has made to you—in writing. If you don’t, you may regret it when you need to draw on your rights and you failed to activate them.

Hint: Practice first. Rehearse what you’re going to say with family or friends because you might be nervous. Also, be specific about what you want from your employer. They have rights too, and will need to balance the potential financial burden of your partial or full absence from work, with accommodating you as best they can under the legal framework.

A Final Thought : Making Others Comfortable Is Fine, but Remember to Take Care of Yourself First.

Look back at the past few days or weeks, and give yourself a pat on the back for what you’ve accomplished so far. You’ve exposed yourself to the entire world—or at least you feel that way—and you’ve maintained your composure and strength, while quelling the anxieties of others. Whether you’ve been proactive at work dispelling myths about cancer in the workplace, or comforting friends or family who might fear your mortality or their own, bravo! Now remember that you’re the one with cancer! There’s a fine balance between making others comfortable so they are there to support you, and weeding out those whom you might not want around right now. Your mental and physical energy should be focused on you now, not them.