Friday, March 13, 2009

Two less legs to stand on

Through the kindness of my friend Wanda, and her connection with a well regarded and kind hearted radiologist, I had my CT scans reviewed.

He confirmed that the originally radiologists were unfortunately correct in their call. What they saw was indeed mesenteric nodes, not some aberrant loop of bowel. In fact, they may have been conservative in their measurements of the growth.

There is no longer any doubt that there is clear progression between December, 08 and February, 09. Furthermore, there is clear progression between September, 08 and December, 08.

It is no longer tenable to believe that these shadows on the CT scan might not be nodes. Three radiologists all agree. A rare event indeed. (I am still sending CDs of my images to a radiologist friend in Paris to get a French take on my mesentery. There are, after all, the experts on all things digestif)

Moreover, there are really no other likely explanations for the nodes growth other than a relapse of the CLL.

This is what I already knew, and didn't want to fully admit. SH-T! (That was my first reaction to the CT findings)

Now that I put those dreams away for good, I plan for my new dreams and my new reality.

I now know what must be done. 

I must stop and collect my thoughts and recharge my spirit. I must regroup. 

I must plan a sensible alternative therapy in the hopes of fashioning an unexpected reversal by plying nutritional levers that most western doctors neglect. In the meantime, I am on a organic raw green diet. Pretty intense.

I must shut up and listen to the upcoming expert opinions in New York as Dr. Kanti Rai and Dr. Rick Furman weigh in on my next move. 

I must hold back from acting on the voice screaming in my ear: What are you waiting for? Why aren't you attacking while the enemy is weak?

If the New York CLL gurus give me cause to pause, I must listen. 

If on the other hand, they see as I do, that this mutant train may be picking up momentum,  I must push Dr. Steven Forman to blow up the bridges pretty soon. Choosing the right explosives and when and where to put the charges will be the information I must bring home from the east coast.

I must be OK with letting go of these burdens so I can enjoy the next 6- 12 weeks as this all comes together.

I must get more rest and sunshine.

I must be gentle with all these "musts"  for the sake of myself, my family, friends, and physicians.



Blogger The Fenner Family said...

From one Cancer flunky to another -
the verse of a song that I cannot remember from whence it came:

"Because of my brothers and friends...

Because of my sisters and friends...

Please let me ask,
Please let me say,

Peace to you."

~~ sarah ~~

March 13, 2009 at 6:08 PM  
Blogger TomD said...

And the most difficult part may be dealing with your local onc who may not want to follow the suggestions of the experts in NY. Contingency plan B is--?

March 13, 2009 at 6:40 PM  
Blogger Alison said...

Brian: I have been thinking of you - it sounds very hard for you right now. Keep doing what you are already doing, and I send you lots of best regards from me!

March 13, 2009 at 9:27 PM  
Blogger J.R. said...

I had so hoped that this would not be the case. But now you know where the enemy is lurking and you can plan your attack from here. With knowledge comes power...the power to overcome. Keep strong and diligent as you always are. I'll keep praying.

March 13, 2009 at 11:44 PM  
Blogger CLL SPOUSE said...

Divine, this exchange, at least it strikes me as such. You survey your landscape and speak the 'musts,' inviting a response and committing to a willingness to hear that response.

You will.

March 14, 2009 at 5:43 AM  
Blogger E. Kostich said...

Since repetition is a key to mastery, you will surely be the master of your CLL. You are a formidable foe and coupled with all of the energy (karmic not gamma) focused on you, a definitive cure is a matter of “when”, not “if.” As the Gosho says, "winter never fails to turn into spring." You have endured the “cold winter” of your life and your perseverance will see you into that wonderful time of rebirth, spring.

March 14, 2009 at 10:41 AM  
Blogger Judy Cleri said...

Dr. K,

Ok, now we know for sure. That is one hurtle that we are over. It's always the unknown that is hard to deal with. You must press forward with all you have to beat this. If anyone can it will be you.

Remember, God never gives us more than we can handle. Leave it with God. We can stress over it and worry about it, but in the long run, all of that just wears us down even more. We must leave all our cares at the foot of the cross......for our Lord and savior to bare.

Our love and prayers are with you and your entire family. Lean on God and he will get you through this.


March 14, 2009 at 10:48 AM  
Blogger Barry B. said...

I've followed your case since I have the 11q del as do you. The bulky nodes are such a problem. Without those, I think treatment would be much easier.

Yet, I see little or no research on CLL trafficking, why 11q seems to settle into the abdominal nodes to such a large extent, and how to deal with it!

Bulky nodes such as I have are a serious problem, and are occasionally quite painful as they press on nerves and organs. (I can't sleep on my sides or stomach, only on my back.) The risk of tumor flare rules out a number of promising agents.

The only thing to reduce them are steroids and radiation. The latter is only palliative, and the former is only temporary.

I'd like to see some work done in getting the CLL cells to stop making these nodes so large.

March 14, 2009 at 3:14 PM  

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