119 – that’s one of my numbers.
3.5 – that’s another one.
One hundred and nineteen months is the most recent estimate I could find for median survival for CLL. Three and a half years is the most recent median time from diagnosis until the first treatment is needed. These numbers recently became “mine” after a diagnosis of chronic lymphocytic leukemia this past June. But what do the numbers actually MEAN?
First some context: I was in Vietnam on a work trip when I noticed the cervical and axillary lymphadenopathy. I ignored it for another month until a “curbside” with a friend and colleague who encouraged me to actually get it worked up.
I was in the midst of a busy and stressful week on our academic hospitalist service, trying to do my best to teach, lead the team, care for patients, and move people through admission to discharge in an efficient and compassionate manner. It was during a patient-family conference that I received the page from my internist (a friend and colleague). I waited until we finished the conference and then gave him a call.
When I called, there was a pause and he said, “Brett, I’m sorry to have to tell you this, but you have CLL.” I heard him but didn’t really take it in. I was too busy. Too stuck in my “doctor” mode of quickly taking in and assimilating information, making a decision, and moving on. I thanked Terry, then scheduled my heme/onc appointment the next day with another colleague who squeezed me in over our noon hour.
I continued to work on service over the next week, taking refuge in caring for others’ illnesses instead of my own. It’s amazing what a relief that can be. I squeezed in scans, appointments, lab work, and discussions with my wife between patients or at the end of a long day. Over the week, I worked to transition from an understanding of CLL as a “sideline” diagnosis to a better understanding the disease and the impacts it will have on my life. Prior to this, I thought of CLL as something people were admitted to the hospital WITH, not something that would usually causes them to become ill. I am a physician and fairly adept at accessing information on prognosis, work-up, and expected symptoms,. Despite this, my wife and I were still uncertain what this meant for us as a family.
It wasn’t until I could take some time off that things began to sink in. The median time to treatment is reportedly 3.5 years for CLL with the biomarkers I have. In the next 3.5 years I have been planning to take a sabbatical in Thailand and Africa, work on more research and educational projects, improve our global health course, and continue the clinical and admin duties I have within my group. Thinking about taking a break for some sort of chemotherapy seems pretty darn inconvenient. A 119 month median survival? Ten more years sounds a lot more fair at age seventy-one than at thirty-eight! At seventy-one, you have already lived close to the median life expectancy in the U.S. Ten years gets me to graduation of my oldest son from high school, and 9th grade for my youngest son.
And what does median survival even mean? These data are close to ten years old. Survival numbers are hard data, but they are no more than points on a graph. Medians. Averages. Five-year and ten-year survival percentages. These are all based on studies which we try to extrapolate to apply to individual patients. We cannot always predict well where patients will fall on the survival curve, and new therapies will constantly move the bars. Time is important, but what matters more to me is how my family and myself will be affected. Will I have to change my work? What symptoms could I have? None? Some? Lots? And how bad will they be?
As physicians, we love numbers when it comes to studies. They tell us what to expect. They are “hard data.” They can give us an idea of side effects of treatment. How many people experience a given symptom. How long someone may have to live. When we are at our best as physicians, we use the numbers to help patients understand and predict a disease process or what to expect from treatment. But numbers tell only part of the story.
Do not misunderstand me – I am not planning to exit work or life any time soon. A median of ten years is actually a long time, and it is likely a lot better now with new treatments in the pipeline. Just this week there are reports of possible “cures” to CLL other than stem cell transplant. I am doing all I can to be the “long tail” of the survival curve with lifestyle changes and work/life rebalancing. With good doctors caring for me and good treatments, I still plan to have a long and robust working life, and. I still plan to retire in my mid to late sixties with a long retirement.
But I have certainly been knocked off the immortality pedestal that many younger people like me think we stand on. I have been re-examining all aspects of my life, including my presence at home, tendency to inhale a fast-food lunch in the hospital in five minutes or less, and my sweet tooth – my secretary tells me that the candy jar is remaining a lot more full since I cut it out. I am also trying to be more physically and emotionally present for my family, friends and patients. I have been trying to ask myself if new commitments or opportunities contribute to making my life and my family’s life better, or worse.
I am not a big fan of battle as a metaphor for cancer – I have always thought of myself as a lover, not a fighter. I prefer to think of last June as my embarkation on a (very) long trip. This is a trip sure to be full of good days and bad days, strength and weakness, courage and fear, laughter and tears, wisdom and irrationality.
So – what’s in a number? Not much…and yet a lot. I am not defined by my CLL. I am far more than a diagnosis or a set of numbers. I remain a husband, a father, a doctor, a course director. I am still planning lots of family vacations, research, and international trips. I continue to try to be the best leader, administrator, and educator that I can be. But I also have some new guideposts to work within. I have extra encouragement to do the things that we should all be doing. Eating better. Exercising more regularly. Getting better rest instead of caffeinating to cover for inadequate sleep. I am striving to be more conscious and grateful for the abundance of good things in my life, instead of focusing on what I DON’T have or what looks better “over there.”
Here’s to the journey…
In Part II, I will explore more about how numbers impact our communication with patients and our practice of medicine.