Susan G. Komen's Story
"I wanted to do something to let her know how special she would always be in my heart."
Growing up, Suzy and I were just about as close as two sisters can get. Suzy was the perfect older sister.
She was beautiful and kind and loving, not only to me but to everyone. She was the star of our hometown of Peoria, Illinois - the high school homecoming queen, the college beauty queen.
I, on the other hand, was bigger, heavier and taller than most of my friends and her friends. I developed my own way of getting attention. I was a tomboy and a mischief-maker and delighted in nothing more than spending hours galloping around on horseback. Suzy tried desperately to teach me about the pretty things in life: how to fix my hair, apply makeup, and coordinate my wardrobe. None of it seemed to work. I was still a big, sort of clumsy girl with two left feet. The boys didn't know I was alive, except that I was Susan Goodman's younger sister.
Suzy came back to Peoria when she graduated from college and got a job modeling locally. Eventually, she married her college sweetheart, Stan Komen.
College, for me, was the first time I felt I belonged anywhere. I was active in many school projects and finally began to have confidence in myself. I felt independent and responsible and ready to take on the world. After graduating, I packed up my bags and moved to Dallas, Texas, home of my father's older sister.
Although we were separated by distance, Suzy and I spoke every day by phone in the late afternoon.
As if it were yesterday, I can remember the phone call I received from Suzy one Tuesday afternoon. Her doctor had found a lump in her breast that was not a cyst. He recommended a biopsy. A biopsy is the surgical removal and microscopic examination of tissue to see if cancer cells are present.
I decided to fly home to Peoria. When I got off the plane, my father was waiting there alone with an expression on his face I will never forget. He didn't have to say a word. At the age of 33, Suzy had breast cancer.
What happened from this point on is still difficult for me to talk about because I am so much more knowledgeable on the subject today. If I had only known then what I know now. The truth of the matter is that growing up in the small town of Peoria, our family had been treated our whole lives by one doctor. Suzy trusted him with her cancer the same way she did with her measles. Mistake number one.
None of us knew enough to inquire about seeking information from a major cancer center or from a group of physicians associated with one in Peoria. He was our doctor. Period.
The most difficult concept to grasp about cancer, I think, is the fact that when it is first detected, the patient usually feels just fine. There is rarely any pain associated with breast cancer in its early stages. So when you are told you've got a life-threatening disease, and the treatment sounds more heinous than the thought of a little lump in the breast, it is understandable that a woman uneducated about cancer might opt for no treatment at all.
Such was the case with Suzy. My sister was terrified, naturally, but adamant against having a mastectomy.
Our family doctor called in a surgeon to review Suzy's case. It is important, if you are to learn from our mistakes, that I tell you a little bit about this surgeon. He was very handsome, very suave and seemed very self-confident.
According to Suzy, this surgeon told Suzy he could cure her. Even the most respected cancer experts in the country (which he was certainly not) do not talk about recovery in terms of surviving cancer or remission. They refrain from using the word "cure" because cancer can recur.
But that, of course, is exactly what Suzy wanted to hear, and who could blame her? Like many women, and for that matter men, too, Suzy was of the frame of mind that the doctor was always right.
This surgeon suggested performing a subcutaneous mastectomy, a procedure in which the outside of the breast is left intact, but an incision is made and the breast tissue is removed. He would then do an implant ten days later. Suzy would be left with a small scar but no more cancer. She felt it was her best option.
After Suzy's surgery, my parents, Stan and I were all at the hospital anxiously awaiting the results. The surgeon walked confidently in the room and said, "You can relax, we got it all. I believe she's cured." My heart sank because I knew enough to know that "cure" is a very difficult word to use in reference to cancer. If it is used at all, it is more likely to be spoken after a five-year period has passed without a recurrence.
For the next five months or so, Suzy felt pretty good. She was convinced she was cured. When I suggested she secure a second opinion just to be sure, she became very sensitive. After all, her doctor had told her she was fine. B
ut before six months had gone by, our worst nightmare became a reality. Suzy found another lump. This time it was under her arm. Despite everyone's optimism, her cancer had spread.
Suzy went next to the Mayo Clinic, where we learned that her cancer had metastasized (spread) to her lung and under her arm. There was a tumor the size of a quarter in the upper part of her right lung and suspicious shadows elsewhere. Their recommendation was 30 days of radiation and then to "watch it."
Well, I, for one, was tired of "watching." I wanted to see some results.
Terror, rage, sadness and above all, a feeling of complete and utter helplessness invaded me. Why was this happening to Suzy, of all people? What had she ever done to deserve to be so sick and so frightened? Although no one said anything aloud, we all knew my sister was now fighting for her life. And it all happened so quickly. She tried to keep up a brave front and would often talk of plans for the future.
A major turning point in Suzy's struggle for survival came from a surprising source: Mrs. Betty Ford. The year was 1978, and while serving as First Lady, Mrs. Ford had finished a successful bout with breast cancer. The whole country was shocked and saddened with the news of her breast cancer and mastectomy. Her bravery touched a place inside of Suzy that none of us could possibly understand because we hadn't gone through it ourselves. In Betty Ford, my sister found new strength.
"Nan," she said, "if Mrs. Ford can admit she has breast cancer and tell the whole world she intends to fight it, well then so can I."
The doctors at Mayo suggested Suzy have radiation therapy, which is a treatment using high-energy rays to damage (burn) cancer cells and stop them from growing. She did have the radiation, but it was not successful in slowing her disease. The cancer was out of control, and there wasn't a thing we could do about it. But we had to try.
Suzy decided to seek treatment at the M.D. Anderson Cancer Center in Houston. When she arrived, she was a Stage IV cancer patient. This means that the disease had spread to other organs in her body and was still growing. It was a very critical situation. But, for the first time, Suzy was part of a team: Her new doctor and his associates made Suzy a partner in every decision. They were completely and totally honest with her and all of us about her condition. Suzy was not only allowed to ask questions, she was encouraged to do so.
Suzy's doctor's approach to the disease was an aggressive one. Thus began the saga of intense chemotherapy. The problem with chemotherapy is that it doesn't know the difference between the good guys and the bad guys, so a lot of important healthy cells are killed in the process, including the cells of the stomach lining and hair roots.
Chemotherapy is often accompanied by nausea, mouth sores, hair thinning, and sometimes total hair loss, depending on the type used. Suzy experienced all of that and more.
Everyone given chemotherapy is warned that a side effect is hair loss, but nothing can prepare a woman for the shock and embarrassment of baldness. She bore up under the strain with all the dignity and grace she could manage, although I know she was devastated. Little did I know that even then, my sister was teaching me.
The stress and tension put on a family involved in a serious illness is unimaginable. You know you must stick together on the crucial matters, so often the tension released is by arguing about the little things. My father had a terrible time. He could not bear the sight of his precious daughter being so ill. As a result, it was our dear mother who bore the brunt of much of the burden.
It was especially difficult for her because during this time lumps kept appearing in my breasts. I had my left breast biopsied three different times during Suzy's ordeal. Once, she had to leave Suzy's side in Houston in order to be with me in Dallas. All three of my tumors were benign (non-cancerous). I hated to worry my mother, but the truth is, I was scared. Every time I felt the slightest little abnormality, my heart began to race. I had learned that women whose mothers or sisters have had breast cancer have as much as three times the usual risk of developing the disease.
Whenever we felt as if we couldn't go on, that the load was just too heavy, it was Suzy's grace and humor that got us through the day. She was able to find something to smile about with every turn of the road, and her infectious, warm concern was felt throughout the hospital.
The one thing Suzy never found humor in, however, was the aesthetic conditions of the waiting rooms. The walls were empty, the chairs uncomfortable, and sometimes a patient would have to sit there waiting six or more hours for a scheduled appointment. Suzy was horrified and so was I. She was more concerned with the treatment of the patients while my concern was the treatment of her disease. I was outraged that more hadn't been learned to help my sister.
"Nan," she said, "as soon as I get better, let's do something about this. You can find a way to speed up the research. I know you can. And I want to fix up this waiting room and make it pretty for the women who have to be here. This isn't right."
For about 15 months, the Houston doctors were successful in slowing down Suzy's breast cancer. But then, for reasons known only to God, the disease started to rage inside her once again.
Fully aware of her condition, but never willing to give up or talk about it, Suzy began a perilous and painful downhill battle. There was more surgery and more chemotherapy, but by now her body had built up a resistance to the drugs. Her cancer had gotten so out of control that it broke through the skin, resulting in grotesque sores all over her chest. She began to spend more time feeling awful and we spent more time feeling helpless.
None of us knew what to do anymore. Up until this point, we had always spoken enthusiastically about our future together. It was becoming more obvious with each new day that this was our future with Suzy.
One day, during the time when Suzy stayed in Houston, we were lying together by the pool at the hotel. She loved to sunbathe as often as possible, because she felt that having color on her face was the only thing that made her look healthy. As I watched her lying there reading, I took note of her thin, frail body and strained breathing. Fortunately, Suzy was into her book and paid no attention to me. Had she looked over, she would have seen my tears and known immediately what I was thinking. O
ur time together was drawing to a close. In a flood of beautiful memories, I began to look back on the sacred relationship I shared with my sister. Frantically, I wrote my memories down, fearing somehow I might forget one later. I didn't realize then that memories so special are never forgotten. I also didn't realize that what I was writing that sunny afternoon was my sister's eulogy.
It was time to begin saying our goodbyes. Our family had always been totally honest with each other, and breaking that trust at this point would hurt Suzy much more than help her. A
fter my sister was released from M.D. Anderson, I tried to come home every other week for a visit. One particular Sunday afternoon on the way back to the airport, Suzy spoke to me again about doing something to help the sick women in the hospital. This practically tore my heart out because here she was, hardly able to manage a whisper, and she was worrying about other people. I couldn't bear it.
When my father pulled up to the curb, I quickly kissed them both goodbye and jumped out of the car. I was just about inside when I heard a funny sound that sounded like my name. I stopped in my tracks and turned around. There was Suzy, standing up outside the car on wobbly knees, wig slightly askew.
With her arms outstretched, she said gently, "Goodbye, Nanny, I love you." I hugged her so hard I was afraid she might crumble. And then I ran to catch my plane. I never saw my sister alive again. After nine operations, three courses of chemotherapy and radiation, she had lost her three-year war. By the time I flew back to her side, it was too late. She was gone.
The months after Suzy's funeral were the saddest in my life. I wanted to stay near my parents because I knew they needed me (the truth is, we needed each other), but I had a son and a home that had been without any attention for a long time. It was time to get on with it, to pick myself up and start living again. Some things are easier said than done.
I spent a lot of time thinking about Suzy. There is no way to accurately describe the void her absence left in my life. I also spent a great deal of time questioning my faith and wondering why such a good person was taken from a family that needed her so desperately. I often wonder, as many people do when they've lost a loved one, what really happens to a soul when a person dies. Was Suzy watching me? Did she hear me when I called her name out loud? After much thought, I came to the conclusion that I would never know until I died myself, but I sure didn't want to die in order to find out. Just in case, I wanted to do something to let her know how special she would always be in my heart. I was haunted by our last conversation and lay awake sometimes all night wondering what I could do to help other women with breast cancer.