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A Broken Window Every Day
Maria Smith, Ernest H. Rosenbaum, MD, Leef Smith
I've had two extremely good fortunes. One was my husband, Donald, a remarkable man with whom I had a magical marriage. The other was my oncologist, without whom I would not have survived. Any other doctor would have looked at my prognosis and said, "It's over!" I was given a gift with the two of them, and something in me used that gift. Subconsciously, I didn't think I could fail either one of them.
If you have confidence in those who care about you, then you can go through a lot of stuff. You go on with life with real strength. I had a lot to support me. Would I have done it had I been a single person? I'm not sure. I think one of the worst things is for people to go for treatment every week and feel that they're in a cold, steel world. My husband and my doctor alleviated that. I always felt that I had a comforter around me.
In 1970, at the age of thirty-three, I had a mastectomy for breast cancer. Later that same year I had a hysterectomy and an oophorectomy (surgical removal of the uterus and ovaries). One morning I said to Donald, "Let's talk about this. Do I have a chance with what's going on here?"
He said, "That's entirely up to you." That's all he said. Not, "I can help you", or, "your doctor can help you" Rather,"It's entirely up to you." I think I took in that message and decided that there was no reason for me not to be positive. What did I have to lose?
My surgeon, Sheldon Levin, also said something very important to me. It was the day before I left the hospital, and my family was supposed to move to a new house. I was kind of down and said, "I want to ask you. We're about to move. Should we?"
He said, "Don't change anything, keep on going." It was a simple statement that helped me. He has been a major support over the last twenty-six years. I have often called him several times a week just to talk.
In 1971, I was told I had advanced breast cancer with liver, bone, and lung metastases. My doctor put me on chemotherapy right away along with an experimental immunotherapy program, BCG, a tuberculosis vaccine and Transfer Factor, a mixture of immunological chemicals. I later had eight weeks of radiation to my back. I didn't know how I was going to do it, but I did it. I had a three-year-old daughter. There was a lot I was fighting for.
Once I got over the pain and my body started to heal, I made an effort to get out of bed every single morning as if nothing were wrong. I'm not sure my thinking was even that specific. I just had a lot of crutches around me, and I was very much in love. I never even thought about it, I just got up out of bed and started the day. That was a gift. That was God's gift.
Chemotherapy was something else. The first time I had chemotherapy, it was devastating. I had to block out a day every week for I don't know how many years. When they'd shoot those drugs in my vein, I could feel them going through my whole body. Immediately, psychologically, I'd become ill. I would go home, prepare dinner, then just go to bed and try to block it out until the next day. I wasn't really very good at it. Donald wouldn't allow me to stay in bed. I'd have to get up and sit at the table. The food would drive me up the wall, but I did it.
Donald also made me get films from the American Cancer Society. Every single day for an hour, I'd set up a movie projector on the dining room table and watch a film about how cancer cells migrate, how they kill, and how they are killed by lymphocytes in the immune system. I don't know what that did, except that it was a hell of a chore.
I went to a support group once and wanted to wallop the participants. To me they were a bunch of whining women talking about losing their breasts. They drove me crazy.
One thing I found that helped was that I never cried in front of my family. I discovered very quickly that if I had an emotional breakdown in front of them, I not only had to lift myself up, but I had to bring all of them up too.
So I just broke a window every day. Sometimes more than one a day. That really got rid of a big thing inside of me. I decided that if I ever wrote a book the title would be A Broken Window Every Day. After a few weeks, the window repairman asked me why I was doing this. I told him I was really angry. He didn't ask me any more questions after that.
Another important point is that I live in a small town, and a lot of gossip was circulating about me. So Donald went to our tennis club one day and told everyone to mind their own business. I didn't have the energy to deal with someone calling every day wondering if I was going to die. There were days that I looked so horrible people must have known something was going on. But I made a conscious decision not to go into any detail with anyone. That privacy was a tremendous help.
I went to the dentist and had to fill out a form about my health. I wrote excellent. Where it asked if I had any diseases, I put advanced breast cancer.
The dentist came out and said, "Are you serious?"
I said, "Very serious." That was the end of the conversation.
It was like being an actress on stage. I just went on with my life. I entertained. We took trips. With my daughter where her schooling was concerned, my activities were limited because my immune system was so weakened. So I chose to do all the carpooling. This kept me seated and let me use as little energy as possible. But it kept me in control of the kids. That was important because I didn't feel detached from her growing up.
I took ten years of chemotherapy and concurrently three years of immunotherapy. The tumors in my liver shrank significantly, and then my treatments were changed to hormone therapy. My doctors tried to compare my old nuclear medicine scans from 1970 to new CAT scans in 1980 only to find out that my old scans from 1970 were not available. The doctors didn't keep x-rays over seven years and they thought I had died, so they simply tossed them out. I was on various hormonal therapies for about eight to ten years, and then, because of the progression of lung metastases, I was again placed on chemotherapy with a complete remission of the lung tumors.
In 1994 I suddenly lost my major supporter. Donald died suddenly of an acute heart attack after returning from the tennis club. It was the most devastating event of my life. Although my mother lived with me, I felt alone for the first time.
Even if you're doing fine, there's a medical checkup on your illness every three months. The worst one was the first one I went to alone after Donald died. I thought I was going to give up the treatments. Now I'm going at it on my own and it's okay. I think I've resigned myself to the fact that I'm either going to be able to make this work a while longer or I'm not. If I'm not, I'll start the countdown and cease treatment.
In 1995 my doctor wanted me to go on Taxol, which meant I would lose my hair again. Actually I did a very bad thing once which didn't turn out so badly. I was on Cytoxan and finally got so disgusted with the thought of losing my hair again that I took myself off chemotherapy for a few weeks. When my doctor heard about that he almost finished me off himself right then and there. Fortunately it did not hurt me.
Faith has been very important to me. I don't follow any organized religion, but I've always believed in God and that's been a source of much strength. But I've always been a strong person. My father had one expression when there was a problem: Handle it. He said, "You've been prepared to handle it, just handle it." I've relied on that strength too.
Maria had an amazingly strong will to live and phenomenal endurance throughout her twenty-six-year battle with cancer. Even when she realized she was fading during the last few months of her life, she did not wish to discuss her future with me. She always kept some hope that she would get better. When asked how she wished to be cared for, her only request was that she should be made comfortable and be allowed to die in peace. She would even lie to her daughter Leef -- who was twenty-seven years old and a newspaper reporter in Washington, DC-- about her declining health. Maria did not want to worry her. While they talked almost daily by phone, she maintained that her health was stable.
In April 1996, Maria began to develop a left-sided weakness. She was unable to get about on her own and had her ninety-year-old mother to help her walk rather than admit that she needed help. She asked her mother not to tell anyone about her failing health.
She became progressively worse, but she didn't want to go into the hospital or see a doctor. Isadora and I were in Europe for two weeks. She refused to have a hospital bed with a trapeze or wheelchair. Her primary physician, Marcie Gotlieb, MD, ordered a home health nurse and blood tests which showed an elevated calcium level reflecting her advancing cancer. She improved only a little on medical therapy.
On the day we returned from Europe I had a message to call Maria. I called, and she said, "I'm going to die today. I've been waiting for you to return. Could you come over to see me?"
When we arrived, I found her toxic and mentally lucid but dying. We had a meaningful conversation, discussing her life and attitude, and she thanked us for our care over the last twenty-five years.
She said good-bye to her family and the special people she loved and died shortly thereafter.
There is a will to live and also a will to die. Maria exemplified an amazingly strong will to live. When Donald died, Maria lost a major life force that had promoted her own will to live. She decided that she did not wish to begin using Taxol, a new chemotherapy treatment, which two years before she and Donald had been excited about. When she decided she could not live with all the disability, discomfort, and pain and could no longer take care of herself or her mother, she decided to die. She was always a proud person and could no longer accept that her illness had taken away her dignity.
Fighting cancer consumed nearly half of my mother's life. It was her enemy, her nightmare, and, ultimately, her greatest secret.
Only a handful of people ever knew that the strong, outspoken woman they loved was battling disease. Even her closest friends, the ones who drove her to chemotherapy each week, were in the dark. Sure, they thought it was odd, maybe even suspicious that she went to the hospital, and of course they asked if she was okay. My mother knew they were on to her but she tossed off their inquiries with what she believed was a plausible excuse. She told them she was on the board of directors at UCSF. It was a lie. It was also her protection story.
"Why?" was the question on everyone's lips following my mother's death. Given the secrecy surrounding her illness, it was a death that hit friends and neighbors like an unexpected blow to the head.
Just hours before her death one of my mother's friends called looking for her. "I'm sorry, I told her, trying hard not to cry. "My mother isn't well, She can't come to the phone."
"Oh, I know Maria has the flu, she persisted. "Just put her on the phone. It'll only take a minute. I want to touch base."
"No, really," I said, my grief turning to anger. "She's dying. She may only have a short time to live, and I can't talk to you right now."
"That's crazy," the woman said. "We talked last week. She's fine."
A friend rescued me from the remainder of that very surreal conversation, but many more like it followed in the days after my mother's death. No one could understand that she had died and they were angry, angry that she hadn't let them help her when she clearly needed it. Some of them felt betrayed.
But she wanted privacy. It was her sanctuary from the disease. It allowed her to survive in the workplace without speculation and emotional injury and to focus her attention on fighting the cancer. She wasted no time battling peoples' perception of her as a victim because few people knew about it. Some would say that medicine kept my mother alive and seemingly healthy for so long. Certainly modern medicine had a lot to do with it. Just as important, though, was her will to live.
My mother was a fighter. She fought every battle on her own terms, and those terms centered on privacy. She was asked several times by her doctor to speak to breast cancer support groups, but to her those women were holding the ultimate self-pity party, and she would have none of it. If my mother had a mantra, and maybe she did, it surely would have been "I am not a victim." Rather than risk being treated like one, she chose to hide her troubles from her friends. And, when it suited her, sometimes from her family too.
Sometimes when my mother and I would have arguments, my father would say, "Don't you realize how sick your mother is?" The answer, really, was no. To all intents and purposes she always looked healthy. No one would dare talk about it. Unlike today, cancer was something you hid from the world, not something you reveled in beating. Whatever else you can say about it, this strategy worked for my mother. Between her trust in the Christian Scientist belief, mind over matter, and the unfailing love of a devoted husband, my mother held off the disease.
The flip side is that until my father's death, I was pretty much out of the need-to-know loop regarding my mother's health. She and my father made it their goal to shelter me from the reality of her condition. That was fine, until suddenly I needed to know.
Clearly what stopped her was my father's death. He was her number-one support and confidant. Without him, she was scared and alone. While I believe my mother would have given anything to see me married and to hold my children, she also knew I was now a grown woman with a bright future. She knew she could let go when the fighting became too much.
As her condition deteriorated she kept the news from me, her friends, even her ninety-year-old mother. At least in my case, it wasn't so hard to do. She lived in California, and I kept a home in Virginia.
While it wasn't my mother's intention to lie to me, more important to her was a lifetime spent minimizing her sickness. Admitting to me that she was really sick meant admitting it to herself. After twenty-six years of fighting successfully, she couldn't admit the truth.
My mother asked me for one thing before she died. She made me promise that I would neither purchase a death notice in the local San Francisco area newspapers nor hold a memorial service.
My mother lived for twenty-eight years in an affluent town in Marin County where she was a well-established realtor and social butterfly. I wanted to honor my mother's wishes. I thought long and hard about the appropriate course of action. In the end, we held a private service at her home, but I was too proud of her struggle and her strength to deny telling the Bay Area about her.
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