A patient’s experience with chemotherapy

“Every Tuesday, my husband and I left our house in New Jersey at 5:30 in the morning to go to New York for treatment. Sometimes we’d get home late in the day. We were in New York for over 215 treatments. I lost all my Italian curly hair. It was very traumatic, but I dealt with it. I was able to work full time for about 10 months; then the fatigue started getting to me. As time went on, different side effects — mouth sores and dry skin — came and went. I just dealt with it. Finally after four and a half years, the fatigue and mouth sores were too much. My body was screaming, ‘Stop! You’ve had enough.’ Dr Kris agreed, and I ended up having surgery.”

Clinical experience with gefitinib

“I’ve been on gefitinib for a few months now and have had no problems. I have bouts of diarrhea, but it has never required treatment. I was told I could take Imodium, but it hasn’t been necessary. The very fact that I can take a pill in the morning as opposed to getting a chemotherapy infusion once a week is a whole different world for me. With my infusion therapy, I’d be knocked out for two or three days and there was so much to deal with. Now, my life is different. I feel very hopeful about it.”

A patient’s role in proactively augmenting her healthcare

“As incredible as Dr Kris and his nurses are, I knew soon after I started chemotherapy that I had to take the bull by the horns and become proactive in my own healthcare. Having cancer is an emotional roller coaster and I knew it would compromise my immune system, so I started doing things that would help calm me, help me feel like I was doing something for me — anything to keep me from walking around in fear every day. I told my husband, ‘If I am going to live in fear every day of my life, then I’d rather be dead. I need to get to a point where I can live with this.’

“I started using integrative medicine services like reiki, shiatsu, acupuncture and massage to give me a feeling of calmness and well-being. I saw a nutrition specialist who put me on a program of supplements and Chinese herbs to boost my immune system that I take to this day. Everything was to keep my immune system up; that was my single biggest focus. I did a lot of reading and I learned about the mind-body-spirit concept.

“I started seeing a social worker with expertise in gestalt therapy — a very spiritual lady. It’s hard to explain, but she helped me deal with the psychological, emotional and spiritual aspects of being — just being — and that contributed greatly to my being alive today. I let go of a lot of baggage and sadness from growing up and realized feeling good is my birthright, but it took a lot of work, training and understanding.

“I realized that I am still here and I’m not going anywhere. I was able to overcome the fears of having cancer. And that’s what I needed to do.

“In my experience, most of the oncology nurses are the heart and soul of the office and they’re excellent. I also know they’re overburdened and very busy. One of the things that nurses can do is help the patient sort out the ways that they can help themselves. Some patients don’t know about integrative medicine and nutritionists and psychologists. The nurses are busy dealing with infusions and the medical end of it, and they just don’t have the time to deal with these issues. They need to give patients as much information as possible to help them psychologically and emotionally — to help them feel empowered.”

Paul Chrystal: Coping with the possibility of losing a second wife to lung cancer

“When my first wife was diagnosed in 1987, we went to a local hospital and there just wasn’t a lot available — lung cancer was essentially a death sentence. ‘We’ll keep you as comfortable as possible and, in a very short period of time, you’re going to die.’ She was 41 years old and died within nine months.

“So, when Barbara was diagnosed with Stage IV lung cancer, I thought, ‘This is it. This is a death sentence.’ The first time you go through this you have a naïve optimism, but the second time, that disappears, and I expected Barbara to die within a year. But Dr Kris approached it differently, and I remember him telling her, ‘I can’t cure you, but I will do the best I can to maintain a quality of life for you.’

“For almost a year, I was confused. Both of my wives had the exact same cancer — adenocarcinoma — and I would flash back and forth between 1987 and 1999. I didn’t know about the medical advances and I thought it was going to be as devastating now as it was then, but it wasn’t. Barbara had problems with chemotherapy, but nothing compared to Pat’s experience. In 1987, it would take her 10 days to recoup and then there’d be another treatment, but Barbara was able to function fairly well despite her treatments. Every eight weeks she underwent CAT scans and there was definite shrinkage of the tumor. I could see it was different this time and I began feeling hopeful.”

Life-transforming role of cancer

“Barbara worked hard emotionally and learned to stay in the moment. That’s also how I function normally — I stay in the present. Today is all we have. I don’t know what’s going to happen tomorrow, but Barbara is still here today, and I’m still here today. You plan for the future — everybody does — but I try to live in the moment and enjoy what I have now. Sometimes the moment is painful, but you still want to live in it.

“We live with this cancer. It’s a part of our life, but it’s not all-encompassing. We live with a lot of things — a lot of trials and tribulations, victories and defeats — and we don’t center everything around cancer. We just don’t. When I say we have a terrific life, I mean that sincerely. We do very well together. I wouldn’t want to trade what we’ve experienced these five years and what we have now and go back. It’s very difficult to explain, but I wouldn’t go back.”

Hopefulness and the development of new approaches in cancer treatment

“When we started the weekly infusions nearly five years ago, we talked about how maybe some day there’d be a pill you could take. Well, now Barbara’s taking a pill, Iressa, which no one even talked about then. Being on Iressa has improved our lifestyle by leaps and bounds.

“It’s so much nicer because Barbara always feels well, and we’re out from underneath that weekly routine of going to the hospital and the needles. As good as Sloan-Kettering is — and they’re the best — it’s still a hospital. There are sick people. Every time you enter that building, you’re reminded. The emotional baggage is there. And when you don’t have to go to the hospital all the time for treatments, it’s ‘Wow!’ — we’re just going about our business. Barbara takes a pill and we go to the hospital every couple of months and we’re back to a pretty normal life.

“You have to get to tomorrow, because if you can make it to tomorrow, maybe there’ll be another Iressa. I don’t believe we’ll ever cure cancer. I believe we’re working toward prevention and getting to the point where we can treat cancer as a chronic disease, like diabetes and heart disease. Pills like Iressa are getting us to that point. Barbara and I are here today and we take care of each other today, because we want to get to tomorrow and see what’s on the horizon.”