Wednesday, November 16, 2011

Fighting the hidden enemy- My big mesenteric CLL nodes force my hand

The disconnect between how well I might look and feel and the growing burden of cancer in my gut challenges my intuitions of how the world and leukemia works. Fighting the hidden enemies is my new imperative, one I can not ignore or wish away.

My doctors Forman and Kipps disagree on most everything, EXCEPT that I need therapy. Soon.

I will be spending the next 2 to 3 months deciding what to do next.

Doing nothing is not an option. Or at least not a very wise option, though it is certainly the most appealing in the short term.

I will not let this decision consume me, but will try as best I can to detach myself from the process and argue as I would for a friend or patient.

I will try to be calm in the face of imperfect choices and incomplete data.

I will try to look beyond the immediate horizons to the best possible future.

I will decide and move on.

I will, in the words of Jon Kabat-Zinn: Meditate, Act and Be Aware

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Anonymous Anonymous said...

Unfortunately, we are traveling down the same path. CLL presents in me with lymph enlargement near the liver and can only be detected with CT scans. My first treatment some 5 years ago was precipitated by two 15 cm lymph nodes. The nodes have since come back in size and are now about 5 cm. Since I am prone to Rituxan induced neutropenia, treatment will be single agent bendamustine with a goal of only few cycles to preserve my primary caretaker role. We will see how that goes soon.
I believe there are papers to be presented in 2011 ASH on Rituxan+bendamustine that might help guide you. Regards, TomD

November 16, 2011 at 7:06 AM  
Blogger Jorge said...

All the best to you.

November 16, 2011 at 12:30 PM  
Blogger Dragon Slayer said...

Making the choice is the hardest part. Once it's made, I know you won't second guess yourself. You're determined. One treatment doesn't fit all and if yoU get too many opinions, you may second guess your own wisdom .. I have the utmost confidence in a friend who helped me make my transplant choice by being a devil's advocate and guiding me to safety .


November 16, 2011 at 5:55 PM  
Anonymous Anonymous said...

Once you cross this hurdle, I believe you will come out the other side of it with a very, very long run. This had to be dealt with and now it will. Whatever decision you make will be well-informed and carefully analyzed. And btw, when I looked at your 2005 and 2011 selves, I though "Benjamin Button".

We ARE all in this together - someone said that....??? so you have a huge home team pulling for you.


November 16, 2011 at 9:32 PM  

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