Battling Cancer in America and Germany

At the age of 54, when my 87-year-old mother was dying of cancer, a small lump was found in my breast during a regularly scheduled mammogram. The optimistic surgeon assured me that the lump would be successfully removed and all would be well. However, a week later the surgeon called, stating that the pathology report showed the cancer cells had spread into the surrounding tissue, requiring more surgery. That was the beginning of 12 years of chemotherapy, radiation, and additional surgeries to combat the metastasized cancer.

Although progress was made in treating the cancer, after four years it spread. My oncologist’s office lost my medical folder. I was so upset and angry because five years of my life were in that folder. My confidence in my oncologist’s staff had eroded so, after several months, I decided to move my treatment to Memorial Sloan Kettering Cancer Center in New York City. Even though my records are computerized there, I now ask for a copy of all my important tests and scans, keeping my own records and being my own advocate.

For so many reasons I am one of the lucky ones with cancer. To start with, I am alive. The week of 9/11/01 was when I found out that the cancer had spread, had metastasized, and I would need major surgery on my organs. I was frightened, but witnessing the horror of 9/11 gave me perspective. Although I had fourth stage cancer, at least I had a chance to live, unlike the young people who were killed that day. I have a loving husband and family that are quite supportive and an insurance company that has paid most of the cost. I am thankful for that, because it is enough to be dealing with a serious illness without worrying about how the

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bills will be paid. My current treatments are alternate weeks of chemotherapy with scans every three months at a cost of as much as $28,000 a month.

While undergoing chemotherapy in the fall of 2008, a representative from Sloan Kettering spoke to me about the possibility of losing my insurance coverage. This was terrible news to hear, especially while having strong chemicals pumped into my body. I panicked. My oncologist expressed her concern, suggesting that I research coverage with other insurance companies because if we tried to pay costs out of pocket, it would bankrupt us, and if my insurance company changed, I might not be able to stay on the trial chemotherapy drug that has kept my cancer stable for two years. In addition, some insurers have a cap of one million dollars. We researched a number of alternatives and spent several stressful months waiting for negotiations between Sloan Kettering and the insurance company to be completed, and the contract signed. Fortunately we were saved, but I wonder if our future coverage will be threatened.

Our lives have changed drastically; each day is touched by this disease. People who mean well suggest that it is important to be positive and optimistic. Although I fear that a moment of concern or worry may shorten my life and burden the people around me, being continually positive is not realistic. There are days that I feel tired and grumpy. The chemotherapy has caused neuropathy in my hands and feet, so walking is uncomfortable and buttoning a blouse is a challenge. I got a new bike when I retired but I can’t ride up our driveway because my legs just won’t cooperate. There is no more tennis or taking long hikes, but I am alive! I have had to be hospitalized several times with infections—my enemies—but I receive chemotherapy and radiation as an outpatient. I once spent over 24 hours in an emergency room because I needed to be placed in isolation that was unavailable. There I was with a compromised immune system sur-

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rounded by sick people: I had no privacy, was uncomfortable and terribly afraid of catching something contagious. I felt terrible.

My husband and I try to get through each day as if we are healthy—some days are better than others. We had a vacation planned when I found out that I would need more chemotherapy that would make my hair fall out. I thought that I was prepared for losing my hair, but when I showered one morning and my hair came out in clumps, I screamed and cried. My poor husband probably never imagined that he would be sleeping beside a bald woman, but there I was. Compared to dying, it’s not such a big thing to lose your hair, but it was upsetting even when I lost it a second time. I did worry about being bald on our trip. I practiced tying scarves around my head, even bought several to match outfits I had planned on wearing, but there were times I wondered if we should just cancel the trip. A wig was out of the question. Our youngest son said, “Please Mom, don’t wear a wig,” and a friend with breast cancer who had lost her hair said that a wig was quite uncomfortable. Friends encouraged me even when I looked like a Chia Pet as my hair began to grow in, and my husband said it didn’t matter to him if I had hair or not. He’s made so many sacrifices because of my health problems; I just couldn’t disappoint him by canceling the trip. The very first night of the cruise, I was so happy to see two other women on board who were also bald. We bonded and waved and smiled each time we saw each other. There were other women on board who came up to me and talked about their own battles with cancer. It made me feel so much better and thankful that we didn’t cancel our vacation.

Illness within my family resulted in my learning a lot about Germany’s health care, which contrasts strongly with the American system. In August, 2007 my brother Franco was diagnosed with non-Hodgkin’s Lymphoma. He is an American citizen who has lived in Germany for over 30

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years teaching voice at a conservatory after a career in opera. He was struggling with sore throats and hoarseness, so at the age of 58 he had his tonsils removed. Although the surgery went well and he was recovering, after a week he was called on a Sunday night asking him to return to the hospital the next morning and to bring someone with him. Monday morning at 8:00 AM he went to the hospital and was told that he had non-Hodgkin’s Lymphoma and he needed to be examined to see how far along it was. I was so impressed that he did not have to make appointments for all of the tests. Everything was scheduled for him, done at that facility, and completed in one week so that by that Friday they had all of the information. He met with a team of doctors, received all of the results of his blood work and the Magnetic Resonance Imaging (MRI) and other scans. They informed him of finding Stage IV Lymphoma that was already in his bone marrow. The doctors told him he needed chemotherapy, radiation, and a stem cell transplant without which, he would be dead by Christmas. They suggested he go home for the weekend, think about what they had just told him, and return on the following Monday with his decision. He returned on that Monday, signed all of the consent forms, and started the first chemotherapy treatment the very next day! All of the tests and research were done in one week.

Since he knew that I was a patient at Sloan Kettering, considered one of the best cancer hospitals in America, he asked his doctor if he should return to the U.S. to be treated. His physician responded that there were doctors from Sloan Kettering there in Cologne studying the procedures being used at that facility. My oncologist confirmed that Franco could get excellent treatment in Germany, a country about five years ahead of the U.S. in treating certain kinds of cancer.

My brother received intense chemotherapy for nine months, alternating between outpatient procedures and stay-

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ing at the hospital for three-week periods to monitor his vital signs after the more intensive chemotherapy. When he received the intensive four days of complete body radiation and stem cells, he was kept in isolation at the hospital for five weeks. Once he was back at home, his doctors made house calls if he ran a fever or was not able to get to the hospital. His eyes were damaged by the intense radiation and the clinic organized two cataract operations as soon as he was strong enough to be anesthetized. Both operations were a success and he sees perfectly without glasses. This was also completely covered by his insurance policy.

Franco received a stipend from his insurance each month because he had paid into the Artists’ State Health Insurance for 30 years at a premium based on his income. Because he wasn’t working, insurance premiums were waived for one year. All of his prescriptions were free and he did not have to pay for any doctor or hospital costs. Throughout his ordeal, a social worker and a psychiatrist assisted him with necessary support and counseling. To aid his recovery he can spend weeks at a spa free of charge. He focused on getting well, not on how much everything cost or if he was going to lose his job. People in America speak about socialized medicine as if it’s the worst thing in the world, yet my brother’s experience was incredibly efficient and thorough. It treated every part of his life with respect and compassion, without costing him anything.

In the year and a half since Franco’s diagnosis he is cancer free, back to work, and feeling stronger every day. Every three months he will receive scans and blood work to check for any recurrence. For the next three years he is considered handicapped and receives discounts on his income tax.

Life is a precious gift that I value. I am so thankful for each day I am vertical. My grandmother used to say,

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“Courage, pray for courage.” There are many days I hear her say those words and they keep me going when I am afraid of what’s ahead. No one has any guarantees, but when I awaken during the night with my fears, I think of all the things I am thankful for. My blessings keep me going. I sometimes also think about all the families that are touched by serious illness and how they have been faced with bankruptcy and choices of buying a prescription or food. Americans are hardworking and resilient and they deserve better. Health care for everyone can be solved and looking positively towards the future will carry us to that goal so we can focus on being well.

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