Author of Here for Now: Living Well with Cancer through Mindfulness and Being Well (even when you're sick) and Mindfulness Practices for People Living with Serious Illness
Can you describe some of the different reactions people have when they receive a cancer diagnosis?
Often people's first reaction is shock. Perhaps they've been tired or just not feeling perfect, but a cancer diagnosis is often the last thing they thought about. Many wonder how long they have to live, how this diagnosis will affect their ability to continue working, how it will change their life, and what will happen to their family. Everyone has different coping strategies. Each person's reaction depends on his or her own coping strategy and reactions vary from numbness to anger.
What advice do you have on how patients can deal with this diagnosis initially?
There are many different ways of approaching something as serious and frightening as a cancer diagnosis. But the first step is to be able to calm yourself. My background is in mindfulness meditation. This technique is based on the ability to acknowledge what you're feeling and the thoughts associated with the feelings. It teaches us to try not to stay in that reactive mode but to simply observe our emotions and reactions, and return to something concrete in the present moment. With meditation you learn that everything passes, everything changes. Even though you may be experiencing some strong sensations or thoughts or feelings, this too will change. The most important thing is that you don't get paralyzed by your own fear, but that you know what you're experiencing is a natural reaction.
Do you have any advice on managing stress specific to a lymphoma diagnosis or a CLL diagnosis?
I can talk from personal experience about lymphoma because I was diagnosed in 1995 with non-Hodgkin lymphoma. I went through a series of eight chemotherapy treatments. About six months later, I discovered that the lymphoma had become more aggressive and I had a stem cell transplant. During that process, I developed pneumonia and came very close to dying.
There were different ways in which I coped. The first one was that I kept a diary. I found it really helpful to write so I would bring colored pencils with me to treatment. It was a way of self-soothing for me.
My mindfulness practice of meditation was also very helpful. When I noticed myself getting upset, I would come back to the present moment and ground myself in something that was neutral. It could be focus on my breathing, music or sounds, looking out at the sky, or visualizing a peaceful time. These different techniques allowed me to maintain perspective. I learned to shift my focus from the negative thoughts or the adverse reactions to something I found to be quieting and calming.
I was able to do that, in part, because for 12 years I had been teaching mindfulness space stress reduction. The theory is if you focus primarily on what's wrong or your fears, that's where your mind goes, and that's where your body goes. It makes everything worse. Whereas if you can also see all the positives in your life, if you know that you are undergoing treatment, if you have a doctor that you can trust, if you're willing to receive support from friends and loved ones, utilize the resources around you, that can be very comforting and very assuring There are different ways of approaching what's going on and your attitude makes a big difference. It is normal to have fear and it's normal to have worry. But you don't have to get lost in it. It's about maintaining perspective.
I found it really helpful to keep reminding myself that this moment I'm here. This moment, I'm actually okay and not going into the future, not getting stuck in the past, but returning again and again to this moment. That's where some of the effort takes place because we're tempted to always go elsewhere rather than being just where we are. Focus on one thing at a time so as not to overwhelm yourself and realize that it's a step-by-step, day-by-day process.
What are some of the difficulties in dealing with a "watch and wait" approach to treatment?
I am essentially following this approach now. There's a tendency to want to do something, to be proactive in your treatment, but you should know that you are doing something by managing your moods. It is actually a wonderful discovery that you don't need toxic treatment. Treatment can have negative side effects in addition to curing the cancer. There is no rush to do that.
Your primary task is to live with uncertainty. The way to do that is to enjoy what you are doing as much as possible. I appreciate the little things that aren't so little. I appreciate the fact that my body is working, that I'm able to walk, that I'm able to eat, that I'm able to have people in my life that I enjoy being with, that I'm able to read, that I'm able to do what I can do. I find I really cherish the moment so much more, and that helps me live with the uncertainty.
I know that when the time comes that I do need treatment that it will be available. But I've learned to really appreciate doing nothing for now.
What can friends and family do to help?
I think the most important thing is to not treat someone with cancer like a patient. Continue to treat them as a loved one or a good friend and see beyond the disease. Listen to them and take your cue from the person because everyone is different.
I find that the worst thing you can do is have pity or be afraid to talk to someone about what's going on and separate them, thinking they're different from you. They're going through something you're not going through, but they're still the same person.
Also, get more information so that you're informed about this disease.
How are you involved with the Lymphoma Research Foundation (LRF)? Why would you recommend people become involved with the organization?
I found the Lymphoma Research Foundation very helpful both for information and in connecting me with other people with lymphoma. I first learned about LRF from a fellow patient and my doctor is also very active in the organization and often asks me to speak at their conferences. Since recovering from my stem cell transplant and having training in mindfulness-based stress reduction and psychotherapy I wanted to give back to others by sharing tools for coping as well as providing hope and inspiration. LRF helped me when I was in need by educating me about treatment possibilities and by introducing me to others who shared their personal stories which helped me through my experience.