Saturday, May 19, 2012

First of ten Rules to live by with CLL

This is based on the presentation I did at the Niagara Falls CLLPAG Conference where I listed ten rules that worked for me in living with CLL.

These are my rules. They helped me, but may not work for you, and that's fine. Know what is right for you, your spirit, your faith, your energy, your chutzpah, your intellectual curiosity, your level of trust of the medical industry, your tolerance for stress, and your world view.

 Use only what feels helpful and disregard the rest.

I will start with one that anyone who knows me or has read my blog with recognize. Any teacher will tell you, it is good to constantly review the importance principles, so please pardon me if I repeat myself.

This is an oldie but a goodie.


Not just to the lows, but also to the highs. I am not suggesting we don't need to express our joy or our worries, that we shouldn't take appropriate action when needed.

I am only saying that we should pause and reflect and react calmly and dispassionately as possible to whatever CLL throws at us.

A cool unemotional look at what needs to be done, which may be nothing, helps you make the most out of a good or lousy hand in both poker and in cancer.

There will be future ups and down. We need to conserve our energy- physical, mental, and spiritual. Everything changes- not always for the better, but not always for the worse either. With change comes a chance to react and act in a new way.

I am not pleading for total equanimity, just that we moderate our responses.

It has helped me immeasurably to live on this wild CLL roller coaster, to live in the moment, and to prepare for the future.

I am continuing to do well in the trial with nothing to report other that a tender pimple on my forehead. Honest!

This should be my biggest problem with ibrutinib.

Avery different Brian Koffman, one that I hardly recognize quoted something like this nugget from Jon Kabat-Zinn.way back on July13, 2008 just a few weeks post transplant, when I was so vulnerable and tender and oh so hopeful.



Life goes on.

Under react.

I have never been able to actually find that quote, but if he didn't say it, I bet he would approve it. Maybe I made it up, and like the Zohar, gave it creditability by attributing it to a great author.

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Anonymous jcleri said...

Great words of wisdom for all who are going through any strugles in their matter what they are.

Now, let me ask this? Are you under reacting to your beloved Kings and the very good possibility they will cinch Title today?

May 20, 2012 at 7:16 AM  
Anonymous Anonymous said...

Looking forward to hearing the other 9 - only 5 months into my CLL journey and under react has been a valuable lesson. Thanks Brian. Best wishes, Deborah

May 21, 2012 at 1:37 AM  

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