Hope, Belief, Trust, and Science

For over 12 years I’ve lived with chronic lymphocytic leukemia. There  is no cure for this chronic blood cancer today. When things go well, you strive to manage the disease and treat it with conventional therapies when symptoms become problematic. Remission is the perpetual goal. And for over 12 years, we’ve done just that. With 54 rounds of conventional chemotherapies and monoclonal antibodies, and countless rounds of high doses of steroids, we’ve kept my leukemia in check, and in remission.

And through all of the treatment and non-treatment, and monitoring, and CT scans, and blood draws, and pet scans, I’ve done my best to live a “normal” life. And for me, normal is characterized by running marathons and competing in triathlons as well as coaching, while enjoying an amazing family, and holding down a full time “real job”. Of course I had some periods of time that may not have been as productive as others, but looking at the big picture, I’ve been blessed in what I’ve been able to accomplish.

My check ins with my oncologist have never too far apart. At a maximum I see him every 3 months to check blood levels. More if something just feels a little “off”. While I’m lucky that I have responded to the various treatment protocols that have been prescribed, these treatments can be toxic and the thought of needing to go through this for the rest of my life does get worrisome at times. Sure, I’m strong and resilient now but years down the road may tell a different story.

I’ve known for a couple of years that we will soon want to explore a different treatment option for me. A better, more effective, and less toxic option. I’ve hoped and I’ve prayed for a better answer. While you won’t hear me speak very publicly about my personal faith or spirituality, that’s not due to a lack of belief. And while you will see me attend formal Church on occasion, you will more often find me having up close and personal conversations with God while on a run, on my bike, while gazing at a calming body of water, or somewhere in quiet meditation. So A friend of mine (who happens to be an oncology nurse) recently reminded me to “Trust the science, and trust the Lord”. And I feel like that’s exactly what I’ve been doing.

Well, soon is now and last week, those prayers may have been answered. Last Saturday I started on a new oral, once a day, chemo pull called Imbruvica (Ibrutinib). We made the decision to treat again because my lymphatic system had again become significantly enlarged. We made the decision to treat with Ibrutinib because it was time for better. I was a little nervous about starting something that I had no history or proven success with. But I was ready. I needed a new solution to more effectively manage my chronic blood cancer.

I am now on day 7 and am happy to report that my side effects are minimal to none. My lymph nodes are drastically decreasing in size and swallowing has been much easier and back to normal. I’ve even been able to run and work out on this drug with virtually no limitations. I’m well aware that 7 days does not a case history make, but I am extremely excited with what I’m seeing (and not seeing) and feeling so far.

More to come and thanks for following my journey.

Trust the science, trust the Lord.

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