Chapter Two: I Have Cancer

Chapter Two: I Have Cancer

            (One week after finding the lump, I went with Richard to our county health department and got yellow fever, tetanus, diphtheria, meningitis, and polio shots and a prescription for malaria pills. Richard's business then advertised on a radio station, which takes some of its advertisers on an exotic trip each year. This year we qualified and had been invited to go on safari in Botswana. We were to leave on April 18. Richard and I decided to press forward and prepare for the trip assuming that the lump would bring no change to our plans.)

            The morning after finding the lump, I went to my doctor. He felt the lump and said in his put-the-patient-at-ease humor, "It's my diagnosis that you have a lump in your breast."  He asked me what my plans were for the next few months. I told him about the Botswana trip and also that we were planning to go to San Diego for a week starting Friday. He said, "Well, you are a healthy woman. I don't think this is anything that can't wait. If the lump is still there when you get back from Botswana, call me and we'll decide what to do then." (In my doctor's defense, it was less than a year since my last mammogram and less than five months since my annual visit to my OBGYN.) I didn't like the idea of waiting for six weeks to see if the lump would go away, but I nodded my assent. Then my doctor picked up my file from the table, put his hand on the doorknob, and said, "Go to the hospital and get a mammogram today or tomorrow." His one-hundred-and-eighty-degree turn-around stunned me.

            The following afternoon I had the mammogram. The technician said the mammogram was normal. (The mammogram was normal!) "Is this a lump I can feel?" she asked. After feeling it she handed me a magazine and told me she would return in a few minutes. When she came back she asked me to follow her to the ultrasound room. There I was introduced to the radiologist who did the ultrasound and almost instantly found the lump. He looked at me and said, "This is not the kind of lump we like to see. It needs to be surgically excised. Do you have a surgeon?" He said I had an 80-90% chance that the lump was benign. "Are you all right with this?" he asked. Would you like to talk about any of this with someone here at the hospital?" When I answered that I was fine, he asked me what the word soon meant to me. I answered "tomorrow?" He nodded and said that time was of the essence.

            The next day I was in the surgeon's examining room. He set the surgery for the following Friday as we would be returning from San Diego that Thursday evening. He assured me my odds were good—eight or nine out of every ten lumps like mine would be benign, echoing the radiologist’s prediction.

            San Diego was beautiful and therapeutic. I felt everything was going to be fine. I had lived a charmed life. Nothing bad ever happened to me. I did, however, go to the American Cancer Society to pick up their literature on breast cancer. "I do not match the breast cancer risk factors," I reassured myself. I was not overweight; I have always eaten a low-fat diet; I have no family history of breast cancer; I had my first child before age 30; I had not been exposed to radiation. I did match two risk factors but felt they were the most insignificant. I was over fifty, but I was just two weeks past by fifty-second birthday. The chart showed that a 50-year-old woman's chance of breast cancer was one in 50; and I fell into the category of early onset of menses (before age 12 is the magic number), and I was still having regular periods at 52. (It seems the more cycles a woman goes through in her life, the greater her risk of breast cancer. "Shouldn't those 72 months I was pregnant reduce that risk?" I thought.) I tried to keep positive, but I had found a second lump in the same breast.

When I woke up in the recovery room my mother and Richard were there. I asked them if they had talked to the surgeon. Neither of them said what I was hoping to hear. They both said they were confused about his comments about “next steps.” He told them the pathology report would be back by Wednesday.

            On Monday afternoon I drove Dan, age 14, to a baseball practice. When I returned John, age 17, said: "Dr. Fisher called and wants you to call him right back." It was 5:00 p.m. I went to my bedroom, closed the door, and dialed the number. When I identified myself to the receptionist, she immediately connected me with Dr. Fisher. A sick feeling filled my mind and stomach. I lay down on the bed. Dr. Fisher was brief. The pathologist had just called to report that he had found a fast growing cancer. Could I be in his office in the morning at 10:30?

            I put down the phone and said to myself, "How does a person react to such news?" Then I heard a soft knock at the door. I invited John in. "What did he say?" he asked. "I have cancer," I said. He, in the most adult and caring way possible, came and sat on end of the bed. He told me he loved me and everything would be fine. I cried.

            Then I heard the garage door opening. Richard was home. I would have to tell another person. I dashed into the bathroom and washed my face. Maybe I could postpone telling him for a while, as he was not expecting any news for a couple more days. He came vibrantly (which is his personality) down the hall, gave me a hug, and said, "Did you hear from the doctor?" I nodded as he continued, "and you got a clean bill of health?" I shook my head and whispered, "I have cancer." I saw the most terrible and wonderful look in his face—absolute terror and absolute love combined. "How should I react?" I thought again. I felt that if I didn't do something quickly we were going to all just sit down and cry for the rest of forever. "I have an idea," I said.  "Let's go out to dinner and celebrate." "What?" Richard asked befuddled. I repeated the suggestion. "Celebrate? What are you saying?" he asked. "How often," I said, "do you find out on April Fools’ Day that you have cancer? I think it's something to celebrate. It sure beats crying.  Let's take John and Dan and go to the Cowboy Grub."

            As I sat in the restaurant on that April first I wondered if I’d be going to Africa. What was my future? How much future did I have? Would I live to see my children and grandchildren grow up? Would Richard have the chance for a second wife?

            After we came home from our celebration dinner, I knew I had to make some phone calls, but before I got up the courage, the phone rang. It was my daughter Michelle calling from California. "Have you heard from the doctor yet?" "Yes, I have cancer." "Oh, Mom. I'm sorry. You’ll be fine. I love you. We'll pray for you." The phone rang. It was my daughter, Anne. "Have you heard from the doctor yet?” "Yes, I have cancer." "Oh, Mom. I'm sorry. You’ll be fine. I love you. We'll pray for you." I knew I should call my other children, my parents, in-laws, brothers and sisters, and Julie, but I was emotionally exhausted. Richard and I lay in bed that night holding hands and feeling closer than ever before and cried ourselves to sleep.

            The next morning the phone rang. It was my mother. "Have you heard from the doctor yet?" "Yes, I have cancer." "Oh, no. I'm so sorry. I love you. You will be fine." The doorbell rang. I could see it was my dear friend, Ellan Jeanne. Somehow she must know, I thought. I opened the door and she stepped in saying that she wanted to make sure we got out walking today. "Then you don't know?" I said. "What?" she questioned seeing the tears in my eyes." "I have cancer." She hugged me; she held my hands; she cried with me. "Whatever you need," she said. "I'll be there for you." Julie called. She had practiced what to say to me that day

in Relief Society when she had to say how she would respond to her best friend who had just been diagnosed with cancer. She said the only thing there is to say, "I am so sorry."

            Somehow during that long and most emotional day of my life, I called my sisters and my other children. No one wanted to talk. I sensed they didn't know what to say or how to say it, which was good in a way because those brief interchanges were all that was needed. I couldn't bring myself to call my in-laws or my two brothers and one sister who didn't know yet. My youngest brother, Russ, is a surgeon and lives close to us. I had been in almost daily contact with him getting his advice. I didn't have an ounce of emotional energy left to say the “C” word again. The phone rang. It was for me. I couldn't talk. "It's O.K.," Richard said handing me the phone, "It's Russ." Trying to disguise the tear-strained voice I said hello to him. "All I want," he said with amazing understanding, "is to tell you that I’m volunteering to call any of your sisters or brothers you haven't felt like calling yet." How grateful I was to him. He knew what I needed. A burden was lifted.

            The next morning at 10:30 Richard and I met with Dr. Fisher. He had a copy of the pathologist's report. He explained that tumors are graded according to how fast they are likely to reproduce. Mine were level III of III—very aggressive. He said that a lumpectomy would not give enough chance of survival because the cancer went to the edges of the resection. The scariest part to me was the phrase on the report: "Lymphatic space invasion identified." Did that mean that the cancer was already in the lymph nodes? I was going to lose a breast, and I felt like, perhaps my life. We felt overwhelmed by the information and the decisions that had to be made. Dr. Fisher set Friday, just three days away, for the mastectomy. We had to decide who would do the mastectomy and the reconstruction, if I wanted reconstruction, what kind of reconstruction, implant, expander, TRAM flap; should I wear prosthesis? Who would be my oncologist? What were the financial implications of each decision? What would our insurance pay? What was my prognosis?

            Richard spent the next two days calling about each of these issues. We decided to have reconstruction done at the time of the mastectomy. (More on this decision in Chapter Three.) We asked Dr. Fisher and Russ (my brother the surgeon) for their recommendations for a plastic surgeon. Both said the same name as their first choice, David Thomas. Our insurance was an HMO where every procedure needed a referral by the primary care physician and pre-authorization by the insurance company. I was given a list of plastic surgeons the insurance would cover at 90%. If I went to anyone else, it would only be covered at 70%. Dr. Thomas was not on the contracted list and all the contracted plastic surgeons were out of town for the Easter weekend.

I called the head of the insurance pre-authorization department and asked if they ever made exceptions and would approve a non-contract doctor since all the others would be out of town. She said that breast cancer was not an emergency. She said I could wait until the doctors came back. I felt like it was an emergency. I wanted the cancer out of my body more than I had ever wanted anything in my life, but I knew intellectually that she was right. I did not push the issue. I thanked her for her time and hung up. Within seconds the phone rang. It was the woman from the insurance company. She said, "After I hung up from talking to you, I said to myself—‘Fay, what kind of person are you?'" She went on to say that my emotional health was as critical an issue as my physical health and would approve paying Dr. Thomas at 90%. I cried. I felt so grateful. It was a touching moment to feel her concern. So the surgery was on for Friday April 5, which was a day-and-a-half away.

            This is what I wrote on Friday April 5, 1996 (Good Friday) in the hospital awaiting surgery. "For the second Friday in a row, I am in the hospital preparing for surgery. Last Friday I had what I thought was two, but what turned out to be four cancerous lumps excised from my breast. Today I will have a modified radical mastectomy. The ‘modified’ means they don't take the muscle under the arm. They will remove the left breast and all the lymph nodes in the underarm area. Then a plastic surgery team will reconstruct a breast using tissue from my abdomen. My surgeons are Dr. Fisher and Dr. Thomas. Fisher is destruction; Thomas is construction. Mom, Richard, and I are waiting in the room together. I am in a surgery gown. We are quite a pathetic sight. I finally made a rule that I was the only one who could cry. After all it is my surgery, and I should have some privilege. The reconstruction of the breast is done by taking an abdominal muscle—tunneling it up vessels, arteries, veins, and all to the breast area. Then they take skin from the abdominal area along with enough fat to form a breast." 

            My first memory after surgery was in recovery. I felt two people holding my hands. I knew it was Richard on the right, but I asked, "Who is holding my left hand?" The voice said, "It's me, Russ."  "And I'm here, too," said Janette, his wife. I felt loved. I had survived.

            My thoughts were consumed, however, with the pathology report. I was sure the cancer was confined to the breast but haunted by the reality that it could be in the lymph nodes. It could be in other organs already, too. When I didn't control my thoughts, I had myself dead and buried.

            A friend, Carolyn, who is an oncology psychologist called and asked if I would like her to come do for me what she does for her oncology patients at the hospital. We set an appointment for the next afternoon.  She said it would take about two hours. I felt nervous. I had never been to see a psychologist. I felt vulnerable. Carolyn came. She asked me to think of the positive aspects of having cancer. "What good has come from the cancer?” I had to admit that there had already been benefits. She asked me to think of what I wanted to do in the future. Did I have reasons to live? We talked about my dreams and plans for the future. Then she asked me to visualize—image a way I could rid my body of the cancer. I told her about the image I kept in my mind before the biopsy/excision.

I had mentally placed a magnetic homing device in my left breast. I envisioned all the cancer cells in my body being attracted to the magnet—being called home. I imagined the migration taking place. I pictured all the cancer cells huddled up together in my left breast. Then when the mastectomy was done—zip, all the cancer would be out of my body. I ended by saying, "But it didn't work." "Why don't you think it worked?” she asked. "Well, because there is cancer in the lymph nodes," I responded. "You have no way of knowing how well it did work," she said with conviction. She had me visualize a new way of getting the cancer out of my body. She asked me what produced the cancer. I answer, “A generator inside my body.” "How can you make it stop working," she asked. "I will unplug it," I answered. "How can you rid your body of the cancer cells it has already produced?" she asked. "The cells will travel down the cord and out the end of the plug," I answered. "Is there a substance that you can figuratively put into your body that will chase the cancer out?” she asked. I thought. "Yes," I said, "A clear red fluid will fill my body and drown any remaining cells." She asked me to set a goal for the future. She asked what I wanted to be doing in ten years. She had me visual myself with those I love in that situation.

Carolyn suggested that perhaps I was too motivated, too hard working, too intense. She asked me to consider that this was a time of my life to do more by doing less. "No," I said. "If there is any chance that I'm on my way out of this life, I want to pack it with everything possible. I want to do more not less." It wasn't many weeks before I wrote Carolyn a letter thanking her for her time and insights and telling her I was learning how to do more by doing less. I was learning that busyness is very different from listening, loving, helping, serving, learning, planning, and praying. Was cancer slowing me down to speed up the development of qualities that really count?

Support Session #2: I Have Cancer

1.         This treatment period of your cancer experience is hard physically and emotionally. Listen to your body. Listen to your emotions. Be your own best friend. Think of things that will help you feel better and do them. If someone asks what he or she can do to help, tell him or her and be specific. It helps others who love you and are concerned about you to be able to do something specific. Some ideas: “A foot massage sounds nice.” “Read me something light or something humorous.” “A raspberry shake sounds good;” “Call me this afternoon. The afternoons get long.” “Can you take me to my appointment on Thursday?” “I haven’t been able to get to the grocery store.  Would you mind getting a few things for me?”

2.         In your history, write the facts about your treatments. Don’t worry about putting it in story form until you are finished with surgery, radiation, and/or chemotherapy unless you want to. (There is a checklist of items to include in your history at the end of chapter three.) Save any get-well cards you receive. To display them you might consider cutting them in half and pasting them on a sheet of paper. That way you can display both the card and the inside of the card in your history. If you receive flowers, take pictures of them and, perhaps, press a few. When you finish each page put it in a plastic coversheet.

3.         In your mind, invite Carolyn, the oncology psychologist, to your home. Answer her questions, just as if she were really sitting by you:

·               What good has come already from your cancer?

·               What are your plans for the future?

·               When you visualize yourself in ten years surrounded by those you love, what are you doing? Write these impressions down.

·               Invent a mental way to rid your body of any remaining cancer cells. Think of ways to kill cells. How can you suffocate, freeze, burn them out? How can you stop them from reproducing? Be creative. Explain this process to your imaginary Carolyn. You may feel this is just a mental exercise, but Carolyn assures me that it has physical as well as emotional results. It surely can’t hurt to try.

·               If you are going to have stem-cell rescue, read Marilyn’s story in chapter eleven. (However, before you agree to a stem-cell rescue, bone-marrow transplant, ask your doctor for the latest statistics on this procedure. At the time of this writing, stem-cell was considered to be no more effective than other treatment protocols that have much less risk and trauma associated with them.)