Tuesday, September 17, 2013

CLL: Eight years and counting

"The whole world is a very narrow bridge. The important thing is not be afraid."
Rabbi Nachman of Breslov

Walking 30 feet up on a telephone pole at the Cancer Advocate Leadership Conference at Miraval
Thank you Escape and Bag It

It was eight years ago on September 7th, 2005 that I received the lab results that changed my life forever and was handed the diagnosis of the incurable (and soon after the added adjectives of aggressive and complex) chronic lymphocytic leukemia.

I have riffed on these anniversaries before, but this one almost passed me by un-noted.

Why? Because recently my focus has shifted from my personal struggles to my efforts to increase awareness of how CLL therapy is changing.

Yes, my personal future is still unclear. Yes, my CLL is still hanging out in my mesenteric nodes and a small percentage of my marrow. Yes, it has evolved into a nastier dance partner over the eight years of this waltz. No, I am not cured, just very well controlled.

Though I would obviously prefer to get off the dance floor once and for all, or at least have a more benign partner who is not always trying to trip me up, I am just fine with living with a well mannered cancer. Fine enough to spend more of my energies in shining a light that might guide others to similar happy outcomes. Fine enough to teach and advocate and support.

I am in the process of putting together my non-profit and working with other not for profits to move forward on the mission of smarter care for all those with CLL and related B cell cancers.

Of course, when I was at XViwCLL 2013 in Cologne last week, I paid close attention to the news and research that might impact my health personally. But the bulk of my efforts in Germany were outward. Please understand that that is not an entirely selfless or strictly altruistic act, but as many have argued before me, a recognition of how much healthier it makes me to share and spread my good fortune. It is so much better for me personally to look to the needs of the whole CLL community as well as my own.

So I almost missed my "anniversary" because my focus was on the future, not the past.

Stay strong.

We are all in this together.

I am moving later  this week, so my posts may be a bit more sporadic over the next weeks or so.

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Anonymous Anonymous said...

Very well written prose . Thanks for all you are doing . Sorry for the health issues you've had to endure. We are all in this together . dx 05/04/2012

September 18, 2013 at 8:33 AM  
Anonymous Anonymous said...

Thank you for all you do!

September 18, 2013 at 9:35 PM  
Anonymous Anonymous said...

Nice Blog...just found it today. Congrats on 8 years. I pray for that success myself. Diagnosed just a year ago, Stage 4 lymphoma , stage 2 cll. No treatment as of yet and glad to hear through your blog of impending additional bullets for the gun.
Keep up the good work!

December 10, 2013 at 4:33 PM  

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