Chronic Lymphocytic Leukemia (CLL)

Eh? What’s this about Leukemia in an RV retirement blog you say? Well, I am too lazy to start a whole new website on this, and am not sure how often I will write about it, so I am just stuffing it in here. If you found this page while googling Leukemia or CLL – great! Otherwise you may wish to move on if you are expecting a post about RV plumbing.

So in 2017 during a routine blood test I had a high white cell count of 13.5K. That’s actually not particularly disturbing at all – my doc just explained to me that I probably had some low level infection. Normal range is around 4-11K, and some people just are higher, so not a big deal.

At the time my Lymphocytes came in at 8250 – again, no big deal. We would retest in a year during my next physical. My doctor said I could see a hematologist if it was worrying me but didn’t think it was too important.

Fast forward to the fall of 2018, and this time I had white blood count of 15.8K and Lymphocytes of 10.9K. Both even higher. I started seeing alarm bells and specifically asked my doctor about Leukemia. He reassured me that Leukemia typically presented with numbers “off the charts”.

I had to come back in 3 months anyway, as he had just started me on a prescription of Lipitor for cholesterol, so we agreed we’d just retest at that time.

So that brings us up to January of 2019, when I presented with a white count of 17.1 and Lymphocytes of 12.1. I still thought I had a mystery infection like sinusitis or something, so I was kinda surprised when my doctor, for the first time. said the words “chronic lymphocytic leukemia”.

The drive home was kinda weird. I googled it in the parking lot. I instantly learned a lot of encouraging stuff:

  • The 5 year survival rate is 83%
  • The median survival rate is something like 13 years, depending on the study
  • A bunch of new drugs have become available

Still, the drive home was a bit somber. Depending on what exactly you have some people progress very rapidly and die. I probably had the disease. There generally isn’t a cure, and its something I’m going to have to deal with forever.

I found myself surprisingly calm about this. After all, we are all going to die. I just know how. But actually that is not true. CLL is known as the “good” cancer. Around 25% of its victims never even need treatment.

So this first thing is to figure out exactly what is going on before I panic. More on this in a bit…

Feb 2019 First visit to Moffitt Cancer Center

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