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Has CLL defined me?

written by Carol Preston
on Thursday, 21st January ,2016

Editor's Note: Although Carol is writing about leukemia, those with other cancers in remission can relate to her thought process.

I have CLL, chronic lymphocytic leukemia, the most common form of adult leukemia.  Simply defined, it is a white blood cell disease.  The white, infection-fighting blood cells run amok.  They multiply at an abnormally fast rate, like unwanted emails in your inbox, and squeeze out red oxygen-carrying blood cells.

I've been lucky.  Although I've relapsed once since my original diagnosis, I live a normal life with no treatment and no restrictions.  So, when I was asked recently at a patient advocacy forum whether CLL defined me, my immediate, knee-jerk reaction was, "No."

Upon reflection, however, the answer is more complex and nuanced. 

I was diagnosed with CLL nine and a half years ago.  I've been treated twice, once in 2006 and again in 2010.  Since 2010, I haven't needed treatment.  The only pill I take is vitamin D3 - when I remember.  I continue my work as a communications consultant and medical journalist.  I travel when and where I want.  I have visited more than a dozen countries since my original diagnosis.

Sounds like "no," doesn't it?

And yet, my CLL since 2006 has re-shaped my life in many ways.  It occupies a permanent sliver of space in my brain.  There isn't a day, an hour, that goes by that I don't think about my CLL.  That doesn't mean that I dwell on my condition.  But it's there.  It's a part of me. Always.

What else?  There's an element of urgency when planning activities.  I mentioned travel.  Now, when I hesitate, I think, "Perhaps I'd better take this trip, see this person... in case."  The 'in case', of course, is a relapse or something worse. 

A dear colleague from my broadcasting days died suddenly of bladder cancer.  He had asked about me at a recent awards ceremony.  I vowed I would call him.  I didn't.  Suddenly, he was diagnosed with cancer.  He spiraled downward quickly and died a few weeks later.  I lost a precious opportunity to connect with an old friend.  Could that happen to me?  So, I must think longer and harder about what will make me a better friend... in case.

My older brother sold his home in easily-accessible Los Angeles and is moving in February to a tiny, beautiful, but hard-to-reach Colorado community.  Will there be enough opportunities in the coming years to see each other?  Or should I dash out to see him before he moves ... in case?

I would love to become a grandmother one day.  Will I get the chance?  I'm almost 66.  Neither of our sons is married.  I think about being a Gramma a lot.  A LOT.  The clock is ticking.  I secretly urge them to hurry up ... in case. 

When it was 'open season' for Medicare, I needed to choose a supplemental health plan and Part D for prescription drug coverage.  I spent considerable time reviewing prescription options for the best coverage for two CLL oral medications, should I relapse and need those medications ... in case.  It turns out that no Part D plan is particularly good for these miracle oral drugs.  Should I relapse and need them, can I afford them?  So, I worry.  Again, it's a permanent sliver in my thoughts.

I've been privileged for the past two years to interview doctors and patients about cancer in general, and CLL in particular.  It's an honor.  Evangelizing about patient empowerment also keeps CLL front and center.  Every day, a CLL digest appears in my email.  CLL.  Front and center.  Every day.

When I think about life before CLL, it's a blur.  The memories, and there are countless good ones, should be as vivid before 2006 as after.  But they are not.  Because when the page turned that fateful July 4th weekend in 2006, my mental F-stop lens re-focused sharply on working around and/or beating the CLL. 

CLL indeed has shaped many of my activities and thoughts these past 9+ years.  Not every minute.  Nothing bad.  But it's a permanently attached sidekick.  It's better to know and acknowledge it ... in case.

I'd like to hear your thoughts about whether CLL or another malignancy defines and/or has shaped you and if so, in what way.  DO you compartmentalize it?  If so, how?  How have you turned adversity into a positive?

Tags: CLL, malignancy, patient empowerment

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