Wednesday, November 23, 2011

Reports of My Death Have Only Been Slightly Exaggerated

I've been back in the hospital with more problems. To make a long, terrible, miserable story short, I'm off the CAL-101 and on prednisone. The operating theory from Dr. Coutre is that I have coloitis, probably caused by CAL-101.

However, as of Friday the 18th, I believe (dates slip away when you are terribly ill), I was released from UC Davis because there was nothing more they could do for me that I couldn't try to do at home.

I am now not undergoing any treatment for my rapidly progressing CLL. I feel poorly and am confined to bed rest. I'm trying to get out and get some little bit of exercise, but incredibly, it has been very difficult to walk more than 100 feet without getting winded and having to sit down. I went to the local grocery store yesterday, and I had to have the bag lady help me out with a tiny amount of food. I was exhausted. By the time I drove home, I couldn't get out of the car without resting for a few minutes. My heart seems to have been weakened by this ordeal.

We are trying to get on some other desperation trial to keep me alive long enough until the ROR clinical trial starts up in probably a year or so. The odds are long, that's for sure.

No sign of transformation so far, thank the Lord.

My quality of life is poor, but I must admit I can now sit at the computer for a half-hour at a time. Paying bills and everything else is now the purview of my wife and the power of attorney for financial affairs. Thank God I took care of that several years ago!

And thank God for caregivers such as my wife. I would truly not be able to keep myself, or my pets, alive without her. I say prayers for her as well as for myself. Little did I know how dependent I am on others.



Hang in there Barry and thank you for letting us know whats going on especially when you are so poorly .

Brian Koffman said...


Sorry to read of your turn. There are many options out there. Look to trials beyond Stanford. There is reason to hope.

We are all in this together.


Tamara said...

Thank you for sharing. Praying for encouragement, for strength in body, mind and spirit. My journey is still rather new, but I understand the tired.

We, indeed, are all in this together!

DAVID HAAS said...

I have a question about your blog. Please email me!

Anonymous said...

barry please let us know if able how you are
God bless

David Arenson said...

Thinking of you . . . hope you are hanging in there O.K.


Anonymous said...

Are you still ok barry ? Please let us know if able
God bless

stew (WORCESTER) UK said...

Does anyone know what happened to Barry ??????????
Is he ok

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