In 2009, 219,000 people are expected to be diagnosed with lung cancer

Only smokers get lung cancer

Lung Cancer kills more people than breast, prostate and colon cancer combined

Radon is the second leading cause of lung cancer in non smokers

Lung cancer is an “old man’s disease.

The five year survival rate is approximately 15%

I stopped smoking 30 years ago, so my risk for lung cancer is the same as someone who never smoked.

Lung cancer research is significantly underfunded.

Lung cancer is not treatable

Every hour approximately 19 people will die from lung cancer.

“How I Met My Mother ” by Susan Levin,founder of LCCH

My Mother’s diagnosis of Lung Cancer was a curse, but also a gift. Before her disease, we were never especially close. My Mother, first and foremost, was my late Father’s wife. There was always a distance – in part it was generational; in part, the “normal” distance experienced by many immigrant children.  Chasia (or Ida in English) was always second in command and often rather subservient to a strong-willed husband. It was not until she was diagnosed with lung cancer, and I moved in with her that I came to regard her as someone extremely special, a true woman of valor.  The days we spent together during her illness made me realize just how much I love my mother. As she told me before she died, she never expected that I would just put my life on hold to be with her. Because of lung cancer, we came to share an extraordinary gift – we truly came to love each other as only a mother and daughter can.

Both of my parents were Holocaust survivors. I myself was born and lived in Germany until I was three years old. I was told I learned English “on the street” my first language being a combination of Yiddish and German. At some point in time I came to identify the survival tactics my parents had to learn. Their suffering made them very self-reliant. They believed they could endure anything.  They never complained and never allowed anyone else to either.  They were not very trusting and often kept “outsiders” at a distance.  While they never asked for anyone’s help, they were quick to give theirs.  Like so many of their survivor friends, as soon as the war was over, they got married and within a few years had a child (me). Despite the horrors of the camps, they made a commitment to building a new life together, and the only time they were apart was when either one of them was in the hospital.     

When   my Father, whom I loved dearly, suffered a heart attack at home and simply refused to go to the hospital I was reminded about his strength of character. He truly believed that he could overcome what he called  “this sort of heart attack”  My Father felt if he could survive being chained to an electric fence he could survive anything. He was strong and self-reliant to a fault.  He refused to let my mother call an ambulance. Though the pain was excruciating, he had to handle the emergency in his own way.  This determination led to congestive heart failure and he passed away 10 months later. It was his strength of will that kept him alive for those  10 months; the doctors were truly astounded.

After my Father died, my Mother was devastated but decided life was worth living. She resumed her volunteer activities and became even more active in the community.  Difficult as it was after over fifty years of marriage to operate solo, she was successful until she began experiencing some of the typical but often vague symptoms of Lung Cancer: shortness of breath and chest pain. First a chest x-ray (they thought it was pneumonia) then a   PETSCAN followed by a needle biopsy, a bone scan and other tests.  Finally a diagnosis that shocked us- my Mother had Lung Cancer. We thought that was impossible. Like so many others, we associated lung cancer with smoking. How can my mother, neither a smoker nor someone overly exposed to second-hand smoke have lung cancer? We learned, the hard way, you do not have to be a smoker to get lung cancer.  One in five women diagnosed with lung cancer never smoked. Like so many others, my mother’s lung cancer was diagnosed in its latter stages when the disease is inoperable and potentially not curable.  The doctor’s recommendation: chemotherapy, which is not a cure but does prolong life and even enables one to live a fairly “normal” life for as long as the drugs work.  For my late mother that was almost eighteen months.

A fter her diagnosis, I decided to move in with my Mother. I became the transporter as my Mother never learned to drive a car. Not driving a car is a real hardship in the suburbs. I sold my apartment in Manhattan and moved in with her crossing the border to New Jersey, a place my parents had moved to after I graduated from college. There were many adjustments that needed to be made. My mother did not want me to live with her. She felt she was ruining my life, and likewise she did not want to appear dependent. For me there were numerous adjustments.  My Mother would not hear of hiring a cleaning person.  This was her home and only she could take care of it. Holocaust mentality reared up; hire someone to do your dirty work, unheard of! A turning point in our relationship took place when she decided I could clean her house. As much as I did not relish the thought, I quickly realized that “allowing me” to clean her house was my mother’s way of reaching out to me. Soon enough she provided me with a closet for my clothes and even acknowledged to her friends that I was living with her.  Those were the “little things.”

What was really important is that for the first time, my Mother and I would actually talk –about the past as well as the present. She was very concerned about my future. She wanted me to date, and she really wanted me to get married because she was constantly worried that I would be alone. My Mothers every waking thought was not about herself, it was always about others.   We discussed literature, and politics and we gossiped – all the things we never did before.  There was an incredible transformation in our relationship. I really began not only to like and respect my Mother but to truly love her for the person she was, a wonderful, funny, special human being, someone I might never have known were it not for her diagnosis of lung cancer. 

Gradually her disease took more and more of her energy and spirit away. When it got to the point that she could not even tie her own shoelaces, and she could not do her beloved needlepoint, she decided it was time to go.  She asked me to call her best friend to say good bye. She also asked that I call the rabbi of the Synagogue saying that it was time for the final prayers. Ours is not a particularly close family, however in response to phone calls several members did appear to pay their respects.  My Mother wanted to join her husband.  Even in the final days of her life, her first thoughts were about others. She was concerned that if she died on the “wrong day” it would spoil the Bat Mitzvah of her grand niece.  I truly believe she made certain to die on a Friday so that her funeral would be on Sunday thereby enabling the event to go on as scheduled. 

When she passed, I felt overwhelming grief and guilt. How could I have missed out on what a special person my Mother was for all those years? How could I have overlooked her kindness and generosity?  I am deeply sorry for what she suffered (usually in silence), but if she hadn’t been diagnosed with the disease I might never have learned how exceptional she was. All those special moments that we enjoyed together might never have happened.

Because of the experience with my mother, and because I did not want other families to be as surprised by a diagnosis of lung cancer as we were that together with others, I founded the Lung Cancer Circle of Hope in January of 2006. I got tired of answering the question: did she smoke.  No one deserves lung cancer, smoker or not. Our mission is to educate the public, including the medical community, about lung cancer, the disease, which is not synonymous with smoking the addiction. All that I am doing to create awareness of lung cancer is in memory of the incredible woman that I called Mommy.  The legislation proclaiming every November Lung Cancer Awareness Month in NJ was introduced in memory of my late Mother. Our educational symposiums entitled Lung Cancer: Dispelling the Myths, Dispensing the Facts are being presented in various venues throughout the state.  We are working with state, county and local government officials to promote a greater understanding of the #1cancer killer of men and women.  While I certainly would have wished it otherwise my mother’s lung cancer diagnosis gave us both the opportunity that we might not have otherwise had. We both got to know and love each other as never before. We both grew as human beings and I believe that I am a much better person for the experience.


Excerpted from Voices of Lung Cancer The Healing Companion: Stories for Courage, Comfort and Strength, published by Lachance Publishing, New York, 2007.