By Stephen Fields
CANCER! The word hit me like a thunderbolt. The doctors think that my 24-year-old daughter has cancer. I freaked out when I was told – I was dazed, numb and unbelieving. Cancer only happened to other people, not my only child. I didn’t know what to do, what to think – I was initially paralyzed. Suddenly, thoughts and questions kept flowing into my head. What kind of cancer? How advanced was it? Had it spread? What are the chances for survival? Why her? Why me?
I was a wreck emotionally. Nothing else in the world mattered right then. I felt helpless and was unable to express my feelings and my frustration. It took a week after the biopsy to get a full diagnosis. Every morning that week I cried my eyes out in the shower. I’m a glass half empty person and kept imaging the worst. I had constant morbid thoughts about my daughter’s funeral. My wife, on the other hand, is a glass half full person. She always looks at things on the bright side.
When we were told the “good news” — that my daughter had stage 2 Hodgkin’s Lymphoma – my wife was palpably relieved and encouraged that the disease was early stage and was of a type that had a high percentage cure rate. I too was relieved that it was early stage and apparently had not spread. We then started the process of chemotherapy treatments and physical examinations after establishing protocol with our oncologist and examining the pros and cons of radiation to follow the chemotherapy.
I’m an experienced lawyer and have spent my entire career helping to solve other people’s problems, giving advice and structuring a pathway to success for my clients. This was entirely new territory for me. The path forward was murky, fraught with peril and there was no guarantee of success despite the favorable statistics about this particular disease. After all, it was still CANCER, early stage or not. My wife and I dealt with the situation clinically, facilitated my daughter’s travel (no subways allowed due to lowering of the white blood cell count to fight infection because of the chemotherapy treatments) and her office visits and took care of the mounting medical bills. However, we were not dealing with the emotional toll. We did not discuss how we were feeling. I kept everything inside of me, was my stoic self but internal pressure and anxiety were building. I couldn’t get rid of the negative thoughts and did not wish to express them at home because I did not want to bring my wife down or depress her. She was Miss Positive, only expressing good thoughts and I tried to do that in the presence of my daughter, but it wasn’t working.
My wife, who is a therapist, suggested I join a group. Our oncologist did not know where to send us and recommended we speak to Sloan Kettering which referred me to CancerCare.
So I joined a diverse group of caregivers consisting of 8-10 strangers from every background and walk of life. Their family members had all different kinds of cancer, all at different stages. There were children whose parents were affected, mothers with cancer-ridden children, spouses caring for one another as well as same sex partners whose significant other was burdened by the disease. We went around the room and just like Alcoholics Anonymous I said “Hi, my name is Steve, and I have a 24-year-old daughter with Hodgkin’s Lymphoma.” Others followed suit and, prodded by the team leader from CaucerCare, everyone started to open up emotionally. It was tense, it was scary, it shook me to my core. After the first 10 minutes of this I was never so depressed in my life. As the sessions went on, I never felt so lucky in my life. My situation was benign compared to what others were experiencing. I also became aware that I am a very good listener. I pay attention. I ask good questions. By the end of many sessions I was making meaningful suggestions to others to relieve their stress and anxiety as did the CancerCare team leader. I usually left the 90-minute sessions feeling good that I had helped someone else cope with their situation. There are not that many things in my life that make me feel good — helping these people in need is one of them.
These sessions were a roller coaster of emotions. Sometimes people wouldn’t feel like talking and other times they babbled on and on. Breaking down and crying was common. A consistent theme was how many families and support systems are dysfunctional. If you think your family members are neurotic, you should hear what others have to say about theirs. There were some good or encouraging outcomes and many bad ones – we lost several family members throughout the sessions.
I soon realized that most caregivers need at least two things in order to cope and do the best for their loved one and themselves. First, especially if they live together, the caregiver needs a break from the ongoing responsibilities which are physically and emotionally exhausting. They need to get out of the house, find some alone time and just provide for their own sanity. A trip to the movies or a walk in the park with a friend can rejuvenate someone. Second, and most importantly, they need someone to talk to, to express their anxieties, fears, hopes and dreams. Often when accompanying their loved one to the doctor, and because they are emotionally involved, they are unable to ask the right question, respond to what they are hearing or comprehend the implications of the advice they are receiving. After all, doctors are human and not all are articulate or speak in a manner that can be comprehended by a layman under normal circumstances, let alone communicating to a family member caring for a cancer patient. The CancerCare groups serve a meaningful purpose on both counts. The group members often bonded with each other. We have this terrible thing in common that others, even close family friends, cannot really comprehend until it strikes home. Others don’t know how to react — many think “there but for the Grace of God go I” and don’t know what to say, let alone be a comforter: Others are simply afraid to broach the subject — it’s the 800 pound gorilla in the room that no one discusses. When a group member had an upcoming visit with his or her oncologist the rest of us helped make a list of questions, we felt would assist in understanding the options available for treatment. We focused on the important things and we were there for each other in a way that very few others could be. There was blunt talk and there was soothing talk and most of all it was straight talk absent ulterior motives. People learned from the experience of others no matter their race, color, creed, economic or educational background. Cancer does not discriminate.