Chapter Six: No Guilt Trips

Chapter Six: No Guilt Trips

            There is no doubt that a person with breast cancer is a victim of a dreaded disease. You'd think that would be enough insult, injury, sadness, sorrow, depression all by itself wouldn't you? But if my situation is at all typical, family, friends, and even strangers in their efforts to be supportive, can unintentionally add guilt on a cancer victim who is already struggling with her own thoughts that perhaps she caused the cancer.

            Since finding the lump, I have felt a certain peace about having cancer. Somehow, I can honestly say it's okay that I got breast cancer. I have learned and am learning much. It has been an advanced degree from a prestigious university. Don't misunderstand. I would not have enrolled voluntarily, and in feeling peace, I am not saying that I am giving up. Dr. Bernie Siegel in his book Peace, Love and Healing cites a New England Journal of Medicine article on mental attitude and cancer. The study followed fifty-seven women diagnosed with early breast cancer. The researchers gave the women personality tests and divided them into four groups—fighting spirit, deniers, stoic acceptors, and hopeless/helpless. The researchers reported on the women at five and ten years. You can predict the survival rates. After ten years 70% of the fighters were alive, 50% of the deniers, 25% of the stoic acceptors, and 20% of the hopeless/helpless.

            It’s interesting that attitude can be measured in years. Dr. Siegel quotes Sandra Levy: "Lower survival rates from cancer are associated with depression or helplessness and higher rates are associated with a sense of coping."  Dr. Siegel’s conclusion is that a "fighting spirit" means the ability to cope with a peaceful heart. (See Peace, Love and Healing, Bernie S. Siegel M.D., 27-28.) And that peace can come despite other people’s responses to our cancer. The thing about cancer, and probably other life-threatening diseases, is that cancer makes you vulnerable to comments, which before the cancer would run right off your back.

Guilt Trip #1: "I know better than you what is best for you."

            In the first week of my diagnosis a relative called. She spent fifteen minutes telling me how she had called her doctor and several of her friends and wanted me to know that I should have a lumpectomy rather than mastectomy. I tried to tell her that there were no clean margins and that the nipple was involved and that two tumors had been found, but her doctor had told her that too many mastectomies were being done. So that meant to her that I shouldn't have a mastectomy. A few days later she called to tell me that I must not consider breast reconstruction. Her reasoning was that only a vain and prideful person would worry about having two breasts when the crux of the matter was treating the cancer. I respect and love this woman. In those first most vulnerable days, I would have appreciated a listening ear more than her critical assessment of my situation. I did want all the feedback necessary to make the wisest decisions. If she had told me that perhaps waiting for the reconstruction would be wise and not used the emotional words pride and vain, I would have not felt she was trying to put me on a guilt trip.

            Other guilt trip phone calls or visits from friends (sometimes distant acquaintances of friends of friends of friends) discouraged me from having chemo. Several knew how I could be cured—by purchasing a product they were selling. One day I spent (this is the absolute truth) three hours trying to say no to one of these friend-salespersons. At one point she took my face in her hands and said, “I know that my cancer will not come back. These products are the secret to eliminating cancer from the world. You are giving yourself a death sentence if you don’t use them. Chemo will permanently harm you. Be safe with these natural products. If they don’t work, then you can try chemo.” I was physically and mentally exhausted when in desperation I finally agreed to buy one of her products.

Guilt Trip #2: You Caused your own Cancer

            About a week after the surgery, a friend came to visit. The first words out of her mouth were, "I know why you got cancer." The same month I discovered the cancer, I had a new book out titled, Give Mom a Standing Ovation. In one of the chapters I tell about a day I was very stressed because of thirteen houseguests and two family weddings a day apart. I told how I slipped away from one of the weddings, dashed home, and cleaned several bathrooms, started a load of laundry, and tidied the kitchen and hurried back. This friend said she had just read my new book and referred to this situation. She said the minute she read that illustration she knew why I got cancer. According to her, I am too compulsive and too driven. Therefore, I got cancer.

            Another friend came to visit. She, too, knew why I got cancer. She told me cancer is an outward manifestation of inner turmoil. She spent an hour telling me of this and that doctor who had written books describing how when cancer patients let go of their hostilities, they were cured. I was told to find a way to satisfy the reason I got cancer and then I wouldn't have to have cancer. I could not convince her that I did not have any inner turmoil of any consequence. She persisted and finally left with the comment that when I wanted to talk about it to call her.

Guilt Trip #3: If you have strong enough will, you won't get sick during chemo or lose your hair or die.

            I read the story of a woman with breast cancer who tells about her amazing will to get well. She tells about never missing a day of work during chemo because she willed herself not to be nauseated. She also willed her hair not to fall out. Pardon me for telling you how I felt when I read this account, but I wanted to go throw up. It made me sick to think that a person would claim that she could have accomplished such a feat. But it wasn't even three days later when I met a woman at the doctor's office who had a mastectomy and ever since had struggled with lymphedema. I listened to her story. Then she asked me if I had suffered any problems with my arm on the side of the mastectomy. I told her I hadn't. Then she said to me, "Why do you think I've had so much trouble and you've had none?" For one second I thought of reasons why I didn’t get lymphedema. I started to tell her about how I did the prescribed exercises faithfully and how I was an athletic person and dancer. But I caught the thought and said to myself, "Hold your tongue, Marilynne; the only reason you didn't and she did is because you didn't and she did. You didn't will yourself not to have lymphedema anymore than the other woman could will herself not to be sick during chemo or have her hair fall out." 

            This same idea has been suggested to me regarding those who have their cancer recur that somehow their will to survive isn't strong enough. There is a big, enormous difference here that needs clarifying. When we were discussing the Dr. Siegel information that fighters survive longer than the deniers, stoic acceptors, or the hopeless/helpless, this fact has nothing to do with somehow keeping your hair from falling out or your cancer from recurring. A key phrase in the Siegel book is that whether a woman's cancer had metastasized or not did not matter as much as which personality type she was. Some of the fighters had their cancers metastasize, but they coped better with whatever happened than those in the other three groups. The reason I got deathly sick and lost my hair from the chemo is not because of weak will or negative attitude; it is because of the drugs I got and the way my body responded. From the day I found out I had to have chemo until the day my hair fell out, I said to my hair many times every day, "My hair will stay healthy. It will not fall out. I will amaze the doctors. I will make medical history." But it fell out, and I found positive ways to deal with baldness.

            In the beginning I thought I could will the lump away. Everyday I'd say, "The lump is not there. It has dissolved. I know it. I can feel it's gone. There is just normal tissue. I will not have to have surgery." But, you know what, every time I checked, the lump was still there.

            I extend this guilt trip idea to its illogical end. I have detected an attitude of superiority in women who have survived breast cancer over women who have recurrent cancer and over women who die from breast cancer. I attended a lecture by a breast cancer survivor. She told of her ten-percent chance of survival. She explained her great need and desire to live. She talked about all the positive steps she took to survive. We all know that having a good attitude is a zillion times better than having a bad attitude, but facts are facts. If you only have a ten-percent chance of surviving, ten out of one hundred are going to make it. If you are fortunate enough to be the one in ten, don't take all the credit for beating the odds for yourself.

            A friend's mother died of breast cancer when my friend was eighteen. She told me people actually said to her that her mother got tired of fighting and just gave up.  My friend said how much this hurt. She said what really happened is that her mother got sicker and sicker. Her body was simply filled with cancer. Women who die from cancer, like my friend's mother, have families and careers and hopes and dreams and want to live. They are to be honored not maligned. That's what I think the oft-used obituary phrase "after a valiant battle with cancer" has come to mean. "She loved life; she wanted to live; but the disease won the civil war she was fighting."

Guilt Trip #4: All cancer patients have similar personalities.

            Three or four nurses in the hospital told me at different times during my hospital stays that if they were assigned to pick ten cancer patients out of a hundred patients, they could do it because cancer is a disease of the gentle, the sweet, those with pliable personalities. I don't agree with stereotyping all cancer victims into one personality type. It’s not logical or true. I think the nurses said this to console me and make me feel special. At the moment they saw me, I was hours (days) out of major surgery and too sick to be anything but weak and tired. They had no idea how I run my life or the way I treat other people. I think this is another form of guilt trip. The implication is that cancer is a disease of the not too successful, the passive, those who let bad things happen to them. I am sure that mean, thoughtless, aggressive people get cancer just as often as the caring, helpful, easy-going people and that successful, strong, driven people get cancer, too. I think cancer is no respecter of persons.

Guilt Trip #5: You are being punished

            You remember the parable of the talents in the Bible? A king is going on a business trip and delegates responsibility to three servants. He gives the first servant one piece of money (called a talent); he gives the second two talents, and to the third he gives three. Ever since the moment I found the lump, I've had a nagging worry that maybe if I'd used my breast better, I wouldn't have lost it. I felt guilt that perhaps if I'd nursed all my children, (I gave up nursing the last four because I couldn’t keep track of the first four and nurse a baby at the same time), the use intended for my breasts, that I would not have gotten cancer. Is that true? I have a friend who is the mother of eleven and she nursed everyone, and, yes, she got breast cancer.

            My mother-in-law suffered a stoke that paralyzed her left arm and leg. The arm was completely useless. She also lost her beautiful singing voice. One day she said to me, "Do you remember in the Bible how God said if you don't use your talents he will take them away from you?" I nodded and she continued. "Well, that's why I can't sing anymore. I didn't use my talent to sing and God took it away." She began sobbing.  "They asked me to sing in the ward choir and I said no. So God took the talent and gave it to another." No, no," I said, "that can't be how God works. If that were true you'd have to say that you lost the use of your left arm because you didn't use it. You'd have to say that I lost my breast because I didn't use it properly. I got cancer because I was exposed to it, or because one cell mutated, or because I was genetically predisposed to get it, or because there is randomness in the world (the ball on the roulette wheel of life stopped on my number)—any reason will do except that God took my breast or my mother-in-law’s voice because we didn't use them correctly."

Why Cancer? Why Me? Why Now?

            As a religious person, I've wanted a spiritual answer to "why cancer? Why me? Why now? I've had two opposing thoughts. Sometimes, just for a moment, I think God is punishing me for my sins. Then, as silly as it sounds, just as often the opposite idea passes through my mind that God gave me cancer to make me into a better person—that the cancer is a blessing, a custom-made challenge—even a gift to help me develop character traits I lack. After vacillating between these two opinions and points in between, I have rational moments in which I come to honest terms with why I got cancer. For me, the reason I got cancer is easy. My chances were one in fifty. I am that one. If I'm not satisfied with that answer, I continually punish myself psychologically, emotionally, spiritually, and intellectually trying to reason through it all. If I just accept the fact that it was random, luck-of-the-draw, then I am free to work on coping, which is present and future rather than trying to figure out why which is living in the past. Living in the past is a trap. Whenever I think the why questions, I remember the monkey story.

            The story is told of trappers who go into the jungles to trap monkeys for zoos. The trappers have observed the monkeys and discovered a trait, which makes them easy to catch. Metal boxes are chained to the jungle trees. Inside the boxes are the monkeys' favorite nuts. A small hole is cut in the top of the box, just the right size for a little monkey's hand to slip through; the trappers leave. Soon a monkey discovers something new in the jungle. He shakes the box. He sees and smells the nuts. He puts his hand inside and gathers a fistful of nuts. Suddenly his joy is frustrated as he discovers that with a fistful of nuts, his hand can't get through the hole in the box. Instead of letting go of the nuts and being free, the monkey will stand, fist clinging tightly around the nuts, until the trappers come and take him away. The monkey traps himself. If I keep my fist tightly clenched around every cancer detail and keep asking why, why, why, I am caught in the past trap. The past trap keeps you in the past. I need to let go of the past, learn the lessons cancer teaches, and move forward.

Unconditional Understanding

            None of the illustrations of guilt trips described here were intentionally planned. None of my family or friends had malice and wanted to cause me added emotional stress. And it doesn't make sense, on my part, to put well-intentioned family and friends on a reverse quilt trip so they become afraid to give any opinion or make any comment. If you are a cancer victim, here are a few guidelines you may wish to consider:

 1.  Don't have too thin of skin

 2.  See the humor

 3.  Appreciate the process. If you don't hear others' opinions, you miss part of the education

 4.  Know that advice givers are struggling with your illness too

 5.  Keep listening

 6.  Consider all the options

 7.  Don't stress over things you can't control

 8.  Thank your advice givers. Remember that they mean well

 9.  Make your choices based on research from reliable sources and don't look back

10.  When medical science finds a better way to treat breast cancer victims, develops a vaccine, and finds a cure, don't despair over the fact that your cancer was ill timed. It is like beating myself up over the fact that today I do my writing on a magnificent computer and which twenty years ago I had to do on a typewriter

Now following are a few guidelines for sharing ideas, opinions, and advice with cancer victims:

1.  When you visit or call a cancer patient do more listening than talking.

2.     If you feel you have to give your information/advice/opinion, give it just once. Whether it's

accepted or rejected doesn't matter.

3.  Keep visits short.

4.  Don't harp, lecture, nag, badger, or scold.

5.  Know you are an important part of the patient's recovery.  Your friendship and understanding is as important as the medical procedures the patient receives.

6.  Try to match the mood of the patient. If you are too optimistic when she is feeling low, you discourage her more. If you think she is too optimistic and try to bring her back down to reality, you discourage her. First try to understand her mood-level, match it, and then if you feel capable of raising her spirits, do it a little at a time. Empathetic is the key word.

7.  Don't say, "I know just what you are going through." Even if you had exactly the same diagnosis at exactly the same age, you are you and she is herself. 

8.  Don't try to tell her your story or stories of people in your experience unless she asks. This is her life-changing experience. Remember rule number one above;

9.     If you don't know what to say, don't stay away. Go visit your friend or call or write a note or a letter. Just say what's in your heart. For example: "I don't know what to say, but I want you to know that I am thinking of you;" 

10.   Don't expect the patient to tell you everything about her illness or how she's feeling. It is

tedious for the patient to keep rehearsing the story. Don't pry and don't ask, "Well, how long did the doctor give you?"

11.   If the patient's immune system has been compromised don't put her at risk of catching a bug

from you by hugging or touching her. Ask her to tell you when she can be hugged again.

12.    Ask her what you can do to help.

13.    Tell your cancer person that you will pray for her and do it.

Support Group #6: Why Cancer? Why Me? Why Now?

Do any of the following according to your needs.

1.       Talk with a trusted family member or friend about any guilt you may feel.

2.       Make a list of any changes you want to make in your lifestyle not because of any guilt but

because you see an opportunity to improve yourself.