Huntsman

I met with Dr. Heather Gilbert at the Huntsman Institute on January 19th. What a nice facility, and nice people! Roger went with me and we were treated very well. I had a full physical, and labs drawn. These labs were to check for abnormalities in chromosomes which give a red flag for a quickly progressing disease. I heard back from them yesterday with the results, and they are all good. I don't have any of the three markers that show a quickly progressive disease. This is a big relief. They couldn't tell me how long it will be before treatment, but they did tell me it will be "at least a few years."

My biggest discussion item with Dr. Gilbert was my age. I wanted to know if there was anything I should expect to do differently with treating CLL when I am 45, since most who get this are so much older. She said that there really is no difference in treatment. Waiting and watching are the plan for now. There are so many things to keep an eye on; the red blood count, white blood count, absolute lymphocyte count, hemoglobin, hematocrit and platelets. These will be things to track in my labs every three months. My numbers this time compared to last time are similar, which is positive. The other things to watch are physical symptoms. Fevers or infections that last a long time, extreme fatigue, night sweats, and general well being. So the plan is that until any number of these labs or symptoms change, life will be all about "watching and waiting". And I'm OK with that.

I met with Dr. Te today and had a very nice discussion with his nurse Practitioner. She spent about 40 minutes with me just explaining blood production and function and what leukemia is all about. She helped me understand some of the things that have gone over my head on the internet. She also made sense of my day to day life. The reasons I am more tired, and sometimes just feel like crap I actually have a legitimate reason! She also explained why I should try to stay healthy. Anything I catch now will just take a longer, stronger course. This made sense of the cough I had that I couldn't seem to get rid of. I have had another lump show up on the back of my neck, but I'd better get used to that. They said they will pop up here and not to worry about them unless they stay tender and grow. Dr. Te says he is content to just stay with the three month labs and check up schedule unless things change and then I should let him know.

So, my final thought. Another new lease on life. I am excited to just carry on as though nothing was wrong. I love my life and plan to keep enjoying it and being normal !! Thanks everyone for your support and love, it means so much to me.