LINKS

I've been wanting to post these links since I started, but being computer challenged, I just couldn't figure out how to just put them in the next column. These links are to some very giving people and websites that have been very comforting to me when I needed some answers to some questions regarding my life.

Dr. Terry Hamblin is a world renowned CLL expert. (One of fewer than a dozen.) He has given the gift of himself to some of us idiot CLL'ers and been very patient at having to repeat himself over and over and over to some of us who are either too lazy to check out the archives, or too dense to "get it," or just simply too fearful that we're unable to get the message. This man deserves to be a saint for his patience. He finally made up his own blog where CLL'ers could go for his definitive word. Oh, and he used to make housecalls! He has a terrific post on what the purpose of treatment should be. I recommend that as required reading for EVERYONE! Go ahead and google the man, and you'll be as impressed as I am.
http://www.mutated=unmuated.blogspot.com/

Chaya Venkat is a young retired person whose husband, PC, was diagnosed with CLL a few short years ago. She can cut through the medical and scientific jargon and make things clear for the layperson. Because of her efforts, (and many CLL'ers) the Mayo Clinic is doing a clinical trial right now on EGCG's effects on CLL. EGCG is a component of green tea that they've found KILLS CLL cells in vitro. If any of you get the CLL diagnosis, (and believe me, if you live long enough, I'm sure you or someone you love will get it) this should be your first stop at trying to understand the disease. Her website is a goldmine that every oncologist should be mining. http://www.clltopics.org/

This is the online support-information group that I've belonged to for the past 2 years. They're the ones who rallied around me to encourage me to get a second opinion when my old onc was recommending treatment based on the "old" gold standard. http://www.cll.acor.org/help.html/

David Arenson was the first one in our ACOR group to set up a blog, and he convinced some of us that this wasn't so hard to do. His is a lot prettier than mine, and he's a much better writer. His Nov. 18, 2005 entry about how he learned he had CLL brought many knowing nods from the rest of us. FYI, I was told 3 months after diagnosis that I had a leukemia and that I should come back in 6 months! So for the next 6 months, I was wondering what kind of leukemia I HAD. http://www.clldiary.blogspot.com

John Wagner is going through chemo right now for his CLL. He's been very supportive of me and my predicament. Somehow we share a special bond because of our mutual walk for awhile.
http://www.johncll.blogspot.com

Both John and David have links to other very good CLL sites that are probably lots easier to access from there than from here. Their links are also in the right place! ;-}

Since this is my first post for April, this should be the bottom one for April 2006, when and if anyone wants to access these sites.

You're probably wondering why I haven't posted any breast cancer links. Personally, I have not found any breast cancer sites that are half as good or as helpful as the above sites. I won't recommend mediocre. Believe me, I was certainly looking after I got the BC diagnosis. Even the ACOR list for breast cancer suffers. I found more answers in a book on BC that I found at Barnes and Noble. Even my oncologist gave me a book that had more answers than anything I could find on the internet. My experience with CLL taught me not to believe everything the doctor tells me, so it was very hard to hand over all the decisions to my oncologist regarding my breast cancer. Having a fast growing cancer forces one to really make some fast decisions. Perhaps my greatest decision was to fire my old oncologist and blindly trust my new one. Oh, he HATES me, too, because I'm ALWAYS questioning! But it's mutually respectful and SOOOO much better than the relationship I had with my other onc.

Now, how do I feel? Fatigue is getting to me. But today has been the first day in awhile that I haven't felt the need to take a nap before 4:00 PM. This constantly changing weather hasn't helped much, either. I've also discovered that some cut flowers STINK! Bless his heart, they look pretty, but this chemo must make them smell funny enough to make me WANT to get nauseated! I had to put them in the back bedroom, close the door, hold my nose as I go through there on my way to the back bathroom, and remember to close the doors behind me. Water no longer tastes like water. It has a metallic taste to it. Pouring a bit of orange juice into it, or making green tea out of it helps a little. Otherwise, all is well. I've been extremely blessed.

Yesterday the ground appeared to be moving just outside my slider window. I noticed an area just teaming with birds of all kinds. Among the robins, sparrows, and chickadees, was even a majestic male flicker. In my attempt to get a closer look, they all got spooked. However, a small sparrow defied me. He was so cute. He had some light fuzz sticking out on both sides of his beak. He looked like a bird with a set of thick, baby blue cat's whiskers. That little bird was so proud of his treasure and trotted around and looked up at me every so often. He never let go of his prize. He'd just glare at me. Daring me. He finally got himself off the ground with his booty. It was a mighty tussle! But he made it into the tree and delivered his bounty to his mate for the softest nest in that tree!

Like I've said. I've been blessed.