Surviving my Lymphoma – The disease of sorrow

My lymphoma was discovered “by accident”. While driving to work on a rainy day, my car was hit and rolled into a ditch. At the emergency room, I began having difficulty breathing. My friend who worked there, Dr. Fr, told me that she had found a tumor in my lung on chest x-ray. I asked her, “Have you checked well? Are you sure that this is my chest x-ray?” After more imaging, I was told that I had enlarged mediastinal lymph nodes, and that the tumor was either a lymphoma or a thymoma. I was hospitalized for a biopsy under CT. The diagnosis was lymphoma. I felt so helpless and frightened of what was about to happen.

I will never forget my first meeting with Dr. G, my oncologist. With a reassuring smile he told me, “Don’t worry, I know how to manage this.” One week later I started chemotherapy, and I did so happily. I took care of myself by imagining the tumor’s location and telling myself “This is the right remedy for me. The chemotherapy goes into my veins, and it knows where to go.” I was very quiet and calm doing this meditation, every time I got my chemotherapy.

I felt that my diagnosis might be related to my relationship with my mother, and that I had to do a thorough “personal cleaning” in order to learn who I was, why this happened to me and how to survive this battle. The day I was diagnosed, I called Dr. F, a psychodynamic psychiatrist, and started organizing a personal toolbox. I sat with Dr. F and I cried for the whole hour. I had the feeling that he also wanted to cry, but instead, he listened and contained himself. The psychotherapy continued for 4 years, until I felt that I had “cleaned” the memories of the bad times of my life:

I am proud to say that I was born in Jerusalem in September, 1940. My parents were very poor. They came from Poland as young Zionists, just before World War II, and left their families behind. They lived on a Kibbutz, and then moved to Jerusalem where my mother had an aunt.

My mother had nine miscarriages before she became pregnant with me. It was a miracle that she had Dr. Op, a German gynecologist, who insisted that she lie in bed for the whole pregnancy! My father worked at the Dead Sea and my mother remained alone at home, but Dr. Op came every day and gave her vitamin shots.

When I was about two years old, my brother was born and my mother stopped breastfeeding me. She didn’t want me to be upset when she breastfed, so she would send me to the backyard. Sometimes I wandered on my own to the nearby market. I would wait for hours to see my father arrive home for a visit every two weeks. He didn’t bring me presents, but he took me in his arms and hug me, and I enjoyed every minute of it. I still remember his smell that never changed, the smell of a laborer, a nice smell of sweat.

My mother used to plug my nose while her friend force-fed me a spoonful of soup; this was how she weaned me from breastfeeding. Later in childhood I developed asthma attacks, and instead of treating me with love and gentleness, my mother believed that my symptoms could simply be resolved with calcium shots! Because she was working, our neighbor took me to the clinic and I would get so tense with pain that they could not give me the shots.

The first school years were a bad experience for me. Maybe I expected compensation from adults and not everybody understood this. Perhaps I demanded more than other kids, or that I was very sensitive and saw things others did not see. This might be one of my blessings.

When I was about 10 years old, I joined Hashomer Htzair (a left-wing youth movement), which offered me an important sense of fulfillment. I chose this particular movement on my father’s recommendation, as it was related to the political party where “all members have an equal voice”. I loved the organization so much that I became a guide, earning some money while working during school breaks.

As I grew older, I wanted to study a profession that would help mankind. I chose social work, which I think was a very good decision because I was in Jerusalem, provided with a comfortable place to live and with food. I made great friends there, I loved the people that I cared for and I never felt alone. I believed in the concept of mind-body wherever I worked.

In January of 1985, I lost my first-born son, Eldad. He was killed in a car accident while out with friends. At the time, I was happily married to my husband and was a mother of three children. My youngest child and only daughter, Michal, had been born with a severe mental-physical handicap. She was our beloved girl, especially close to Eldad, who was blessed with both beauty and compassion.

Soon after Eldad’s death, we were supported by a friend and well-known sculptor, HM. She suggested placing his signature on a memorial stone at the location of the accident. There, on an adjacent wall, we also engraved our new motto, taken from the bible: “Choosing Life”.

During the same period, I began looking for a PhD topic. In spite of my difficult emotional state, I chose to explore Holocaust survivors’ life stories. Professionally, I worked part-time as a family therapist and directed the Be’er Sheva social workers training institute. After the tragedy, I left this position to become a full-time therapist in a psychiatric ward and in the family medicine department, where I was received with great respect and love.

I’ve had an unusual experience working at a family medicine teaching clinic. I have traveled to many places around the world, but I have never seen such a clinic or met patients like those we cared for. The work was an important learning experience for me, both academically and emotionally, and it often felt like therapy.

We lost Michal when she was 28. She had been institutionalized since she was 14 in a nice place, though it was far from home. We visited her often and took her home for holidays. She died of a severe head injury after a fall. We sat “shivah” and many people visited us and tried to console us, but the pain of her loss is still agonizing.

I feel that now I can reconcile with my mother: I think my mother was, altogether, alright with me, although she was miserable. She was an orphan and she never stopped being an orphan. That was my mother.

Throughout my illness, I started to really love my husband in a special way: he never left my side, staying with me in bed or traveling beside me, and never neglecting a meal. He was secretly terrified that something might happen to me.

After 5 years of follow-up, I felt a lump and immediately had a biopsy; the lymphoma was active again. I was transferred to the hematology unit, where Dr. I and Dr. K were my physicians. When Dr. I told me that my only treatment option was a bone barrow (BM) transplantation, I asked him for an alternative. He responded by saying, “Sorry, I don’t want to cheat you. If you don’t do a BM transplantation, in three months you won’t be with us.” The next day, I agreed to start the treatment, which was a long, difficult and distressing experience, being alone in an insulation room for several weeks.

Dr. K was so wonderful. He came in several times a day and would cover my feet with a blanket. I gave Dr I a copy of my book based on stories of women with breast cancer, and he read every word.

In the waiting area of the PET-CT, I talked with other patients. When they asked about my experience, I answered, “It happened, it’s over, and I am happy it’s over.” One man asked if I was certain that I was happy, to which I responded, “Every day I see my son and my husband, and I see the sky, I thank god. I don’t need anything else”.

I believe that Lymphoma is “the disease of sorrow” and its treatment must be holistic, emphasizing both the psychosocial and biomedical aspects of care.

AY, a retired medical social worker, was diagnosed with lymphoma when she was 53 years old, an incidental finding on a chest x-ray after a car accident. She had received chemotherapy, radiotherapy and a bone marrow auto-transplant.

This article is based on a videotaped interview by AB, a family physician and AY’s friend of 30 years. They worked together in an academic Family Medicine clinic in Be’er Sheva, Israel, and taught Family Medicine residents at Ben-Gurion University.

We hope this account will help others challenged by a serious illness, to develop and enhance their own ways of management and surviving.

We thank Aviva Friedman, MD student at MSIH, Beer-Sheva, Israel for her help in revising the manuscript.