The other day my hematologist said to me, “You’re boring.” That may be the nicest thing anyone has ever said to me.

His “compliment” came nine years after I had been diagnosed with CLL, chronic lymphocytic leukemia. On this visit, my blood numbers looked nearly perfect. I could exhale for the next few months until it was time to return to check those counts again.

July 2006 marks my “before” and “after” moment with CLL.

On July 3, I was being checked for what I thought was a stomach issue.

On July 5, I was told that I probably had CLL

I had never heard of CLL. All I knew was that I had cancer. Cancer! Within a week, I was diagnosed at stage IV on the Rai Scale skyrocketing white cells, plummeting red cells and platelets, an enlarged spleen. I was a very sick woman—and very frightened.

I underwent two different chemotherapies, one in 2006, the next in 2010. There were times when I thought I might not make it.

Here I am, thankfully, nine years later. What’s changed? Well, not much of anything. Yet, in many ways, just about everything.

I’m still working as a part-time communications consultant. I am still a wife and mother and have watched my “boys” grow into independent adults. I’ve traveled overseas to more than a dozen countries, some trips for business but mostly pleasure. I watched one son become a doctor and another an analyst for a music company in New York—happy, normal events.

So what’s different? All of you, who now have become a big and important part of my life.

I had never met another CLL patient until curiosity got the best of me, and I attended the February 2014 CLL Town Hall meeting in Houston, Texas. The draw for me was Michael Keating, my hematologist at MD Anderson Cancer Center, who was a panel member. I don’t remember how I found Patient Power or if anyone had referred me to the website. I simply thought that this might be an interesting, one-time phenomenon.

Was I wrong! Suddenly, I was surrounded by 300 CLL patients and care partners. People started introducing themselves and exchanging information about the particulars of their disease. I’d never been interested in talking about my CLL. For me, normal had been to live my life as if I didn’t have CLL. Now I was encountering what would become a new normal—to discuss CLL not only with other patients but also physicians. It wasn’t scary. It was enlightening and energizing.

I met the town hall meeting moderator, Andrew Schorr, that day. I took a selfie of us and sent it to him. Soon we talked about how I might use my journalism background to help spread information and evangelize about patient advocacy.

Among the greatest joys of this work has been through the Patient Café project, a virtual “coffee klatch” on the PEN and P-2 websites. Each month, four to five of us meet online at the ‘café’ to talk about ways to become more empowered patients—from choosing the right doctor to seeking a specialist, handling physician visits, involving our families as partners and asking questions—questions about treatments, clinical trials, day-to-day living. I’ve learned so much from Randy and Dennis and Betty and Donna and Len among others. And better yet, members of each group are keeping in touch. Like me, most had never met another CLL patient until they met online. And each of us craves information to live our lives more happily and healthily.

There are two more "café" meetings scheduled. What topics do you think we should add to the conversation? Tell me in the comments section of this blog.

In the meantime, thank you to all of you for your wisdom and your support. I look forward to connecting with more of you in person and online over what hopefully will be another nine, medically “boring” years.


Carol Preston CLL Patient Advocate