People ask me periodically how I am doing with my Chronic Lymphocytic Leukemia (CLL). Sometimes the question is easy and quick (last hemoglobin was 14.6, WBC 5.8, Platelets 124). Sometimes I am asked how I am balancing work, family, health/illness, etc. This one is harder. People seem to be looking for words of wisdom. I will tell anyone from the outset that I do not feel particularly wise.
I would like to say I have a steady and consistent approach leading to some perfect harmony and balance. That would be untrue. I think the best way to describe our (my family’s and my) approach to CLL is a pendulum. There are times when the CLL is all-consuming due to some sort of flare. Other times it fades into the background and we largely ignore it. Even my monthly infusions, which are a consistent reminder of the CLL, lend themselves to phone meetings, e-mail catch-up, or in-person meetings. (Yes, I am a much better doctor than patient. It is far easier to tell others to slow down than to do it myself.)
Since my hospitalization in Thailand in the summer of 2014, I have hoped for stability. Last June I wrote a post about trying to balance work, life, and chronic illness. Just one month later at our favorite family vacation spot in the North Woods of Minnesota at a family YMCA camp with close friends, including two other internists and a pediatrician. Once again I began to feel more tired than seemed justified, and I thought my color looked a little pasty…you would think I would be able to spot a flare-up better. Not wanting to worry my wife, I asked my two internist friends what they thought of my color and symptoms. The three of us hemmed and hawed in the dining hall and decided two to one that I was probably okay. We were all leaving the next day anyway, and I would go have my labs drawn when I got back home.
For the record – I was in the “probably okay” camp. Call it denial if you want – another hemolytic anemia certainly did not fit into my next six-month plan – but nonspecific symptoms like fatigue are difficult to parse out from fatigue simply related to life. As for the pallor? I am a pale Minnesotan guy. My skin does not see a lot of sun, going from blindingly white to pink in a matter of minutes.
The day we were heading home from camp I felt a little worse with a bit more fatigue, crossing the line from “probably okay” to “probably not okay.” Labs that day changed that to “definitely not okay,” with a drop in my hemoglobin from 14 to 9.8. Instead of my routine IVIG, I had IVIG and 1000mg of methylprednisolone (ugh I dislike that stuff).
I was back on a similar ride as the year before. The difference this time was that I was at home, and this episode was not nearly as bad. My nadir was only 8.6, instead of 5.1, and I did not need any transfusions or hospitalizations this time. Being at home was easier in the obvious ways. There was no language barrier. Maia and the boys were not staying in hotels. There was no added stress of needing to get home. We had access to our community of family and friends for support.
In those few days, from symptoms to diagnosis, I had gone from planning to continue to work, planning some work travel and continuing our busy schedule to needing to step off that path once again and focus on being a patient. I was back to taking things one day at a time, following the ups and downs of CBC’s closely, and trying very hard to plan NOT to plan.
This flare seemed like more of a betrayal than the one in the summer 2014. Back then I could point to more defined things I had done that contributed to the flare – overworking, not exercising enough, over-stressed. But I thought I had things under better control this past summer. I was overworking less, and I had not been feeling as stressed out. Exercise? Well, it is a constant work in progress.
I was surprised to find that in a few ways being less sick was harder than being more dramatically sick. When I was hospitalized in Thailand, needing transfusions and getting short of breath just walking around the room, everything was on hold. But this time I did not feel that sick. The hardest thing for me was deciding what I should and should not do. There were the obvious things – I could not work a regular week on service, but what about all the other stuff, like E-mails, and Meetings and Kids’ events? I am not very good at saying “no,” and I hate missing out on things, even when I have to.
Over the past four months, I have been weaning down prednisone to a very low dose, continuing IVIG, and I am becoming acquainted with one of the other blah-blah-blah-mab’s whose monoclonal antibodies target the CLL similar to rituximab. I am feeling well. The pendulum has been swinging back to CLL fading into the background. I am back to working a fairly full schedule including weeks on service and administrative duties. My sons are in their full complement of fall school and extra-curricular activities. I started working with a personal trainer after my oncologist told me very discreetly that he is noting an “increase in central adiposity.” I am sure that the prednisone has everything to do with it. Lack of exercise and overeating could not possibly be to blame…
I don’t have any magic formula for dealing with CLL. I try my best to decrease stress, eat well, and exercise. More importantly, I try to live well with gratitude for all the great things in my life. Things like my family, health, friends and colleagues. These are the things that matter.
This past Thanksgiving weekend, I was back at the same YMCA camp in the North Woods of Minnesota. At camp, a new season means changes. Now instead of hearing kids splashing and screaming at the beach, we hear kids running around in snow pants and tromping down the trails. The leaves are gone, but the sun is still reflecting off little ripples on the lake. This season I am feeling well, hoping for a season free of flare-ups. But knowing that the backward swings will continue, I will try not to get too upset when they come. All I can plan for is to do my best to weather them.