By Paul Salmon, PhD – Patient
My experience with chronic lymphocytic leukemia (CLL) began in 2018 during a bus ride with fellow runners on a Saturday morning returning from a Triple Crown run leading up to the Kentucky Derby. While checking race results, I noticed a new email from my physician’s office. I’d just had a physical exam and was feeling fine.
However, test results revealed an abnormally high white blood cell count and I was referred for further diagnostic testing. Cancer was the farthest thing from my mind, but it turned out I had early-stage chronic lymphocytic leukemia and was in the pre-treatment period preceding called Watch and Wait or Active Observation, which can last for months or even years. Now, at age 77, I haven’t yet started treatment, and seven years since my diagnosis I remain active and energetic, but naturally concerned about what the next blood test will reveal.
Odds are I’ll need treatment, although with CLL there’s a 30% chance that it may not be necessary. Not great odds, and the time spent in Watch and Wait can trigger chronic worry and anxiety. How then, to manage the Watch and Wait phase of CLL without being sucked into a whirlpool of stressful thoughts and feelings about an uncertain future? After all, the typical response to the shock of a cancer diagnosis is to begin treatment immediately. Not so with most forms of CLL, which is often described as a “good” form of cancer. Please — having cancer is NOT a good experience! It is however an aspect of life that can be faced with poise, resilience, and gratitude for the time we have.
My primary way to help counter anxiety about the future is through mindfulness meditation. Mindfulness involves learning to focus attention more in the present moment, rather than living so much of life lost in thoughts and feelings about the past and future. Sounds simple enough, but as we all know, focusing attention on anything for more than a minute or two is not easy, given our distracted, ADHD-ridden culture. Nonetheless, medical patients, teachers, parents, businesspeople, taxi drivers, healthcare workers, athletes, and many others have developed the simple practice of learning to focus attention in the present moment, with beneficial results.
Mindfulness is helpful in facing CLL because it emphasizes living life fully in the present, especially during the Watch and Wait phase. It’s a form of mental training that involves three steps during periods of quiet sitting: 1) focusing attention in the present moment by attending to the breath or other present-moment physical sensation; 2) noticing when attention shifts to thoughts or feelings about the past or (especially with CLL) future; 3) using the awareness as a signal to bring attention back to the breath. Though simple, it’s not easy, especially in the beginning when it’s hard to stay focused.
Start with something manageable, like sitting quietly for 5 minutes a day. Find a place and time where you won’t be disturbed but can stay awake. Sit comfortably, set a quiet timer, close your eyes, and become aware of the breath, noticing the physical sensations that arise as you inhale and exhale. When your attention wanders off, gently return to the breath, doing this as often as needed. After five minutes, open your eyes, and bring to mind a soothing phrase like “May I be at peace; may I be well”.
The process is similar to gaining mastery of the body by getting stronger, increasing endurance, losing weight, or becoming more flexible. In fact, you can gain surprising mastery over the mind through mental practice that puts you more in touch with life in the present moment, calms the body, and helps manage blood pressure and other signs of stress.
Although it’s hard to stay focused, it helps to persist, like when you begin lifting weights or take up running. If you have a partner, consider practicing together, especially since they are likely stressed out as well. And if you really find it difficult to sit for even a few minutes, try one of the many meditation apps available for structured guidance, like training wheels on a bike. Or sign up for a meditation class at a local community or fitness center — mindfulness is now mainstream, and opportunities to practice are everywhere!
Keeping a watchful — but not obsessive — eye on how you feel day-to-day is part of the Watch and Wait approach. It means being OK with a slowly progressing condition that can’t yet be eradicated but can often be controlled. Research convincingly shows there’s no advantage in beginning treatment when CLL is first diagnosed. In fact, a key advantage of having the luxury to Watch and Wait is that you will likely benefit from future forms of treatment that target each individual’s condition with increasing precision and effectiveness.
So be careful not to spend too much time mindlessly watching and waiting! Don’t put your life on hold, waiting for something that may or may not come to pass. Keep your bucket list full and make the most of the time you have. Take comfort in knowing that, if the need does arise, you will benefit from treatments unattainable only a few years ago. Patience, trust, and self-compassion – key mindfulness attitudes — are worth developing, I have found great personal benefit in the process!
Paul Salmon, Ph.D., is an Associate Professor Emeritus at the University of Louisville. He is a writer, runner, musician, personal trainer, and Y Livestrong program Co-Director. Deep gratitude to Peter Titlebaum, Ph.D. and Susan Matarese, Ph.D. for reviewing this article.
