Monday, October 15, 2007

A Busy Two Weeks

Well, "retirement" continues to be a busy time! I had my oncology appointment on Monday, October 1. The blood work continues to look fairly good, although platelets are below 100 again. I believe it was Dr. Keating that said the blood is only the tip of the iceberg for many with CLL/SLL. My doc again reiterated that he felt we were about at chemo time and wanted me to "stop procrastinating" and get the appointment at MD Anderson with Dr. Wierda. I explained to him I was NOT procrastinating it was the fact that my new insurance still had not approved a referral and I was waiting on that. I guess he understood that because he hasn't gotten the approval from them yet for IVIg infusions, either. This past Friday, I got my appointment date for MD Anderson -- November 12th. I'm not sure of course, but I think Dr. Wierda will recommend holding off on chemo and continue to watch and wait as long as I can get the IVIg to try and stop all the infections. My doc confirmed the X-ray the week before showed the pneumonia was gone.

On Tuesday the 2nd, Cheryl and I drove 200 miles for lunch. Why would we want to do that? Well, it wasn't for the food (although it was good), but for some great company for lunch. David E, the fellow I have written about often here on my blog, was in San Antonio for a conference for his work. It was a great time and well worth the trip. He is just as great a guy in person, if not more so, as he seems on his prostate cancer blog. He even insisted on buying lunch! Unfortunately the time passed much too quickly and he had to get to his next workshop. Perhaps we can meet him and his wife again someday in his home area. Here we are on the river walk:
Then on Wednesday the 3rd, I had my Endocrinology appointment. They primarily monitor my diabetes, osteoporosis, cholesterol, triglycerides, carotid artery that had blockage, and other weird blood stuff. Listening to my heart she said she thought she heard a murmur. She asked if I had my heart appointment yet. They have been trying to get me to go for almost a year because they say it is important to monitor because of the diabetes. I keep putting it on the far back burner because I see enough doctors as it is, so I had to confess I hadn't. She couldn't find the results they did of an echo cardiogram in August. (I knew they had checked my legs then and my chest, but I thought they were looking at circulation problems.) Anyway, the results had never been sent back so I waited while they found the results and faxed them to her office. Well, seems that test showed an enlarged heart, so this Thursday I finally get to see the heart specialist they have been pushing me to see.

That Wednesday and Thursday I was just worn out. Our church was having a special program with Team Impact on Wednesday through Sunday. Perhaps you have seen then on TV. They are the guys who are former football players, body builders, weight lifters, etc., who do amazing feats of strength, but also present a strong gospel message. I just couldn't make it and help out. I did get to attend the last one on Sunday evening. They were very good and pretty amazing. They broke lots of wood, flaming barriers, cinder blocks, blew up hot water bottles by mouth until they exploded, etc. More importantly was the message. During the five days, over 240 folks came forward in making personal decisions. We had overflow crowds that were in the youth area and gymnasium. Amazing.

That Wednesday we received some good news. Cindy, Corbin and Jonathan came over to our house. On the front of Jonathan's shirt it said, "I know something you don't know." Cheryl asked him what he knew. He turned around and on the back it said, "I'm going to be a big brother." Yep, she is pregnant. She is due next June. Our fourth grandchild. Jonathan is excited too. I told him, "I know something YOU don't know." He asked what and I told him, "You're going to be a babysitter!" On the 8th, Jonathan turned 13!

On that Friday the 5th, I had my dental surgery that was moved up from Saturday. I was SO very nervous about that surgery. I said I would have rather been going into chemo again. The anticipation of the event was MUCH worse than the experience - just like chemo was much easier, for me, than the nervous buildup prior to my first infusion. Before I got several shots of Novocain, I was first hooked up to an IV that had Valium, Decadron, and two other drugs I can't remember. Basically I was in La-La Land, although awake. I was pretty much aware of things, especially that he kept telling me to open wider and turn my head this way and that way. I only had two tiny twinges of pain at one point that were nothing but he was so apologetic. No pain when he was removing the tooth and he said he had a hard time with that. He said pain management was a big concern for him. Apparently he took a skin graft from the roof of my mouth to cover over some of the gum area. He also did two lower teeth that I didn't realize he was going to do, although we had talked about that as a smaller problem area. Everything along the gum line on the left top, the roof of my mouth and bottom left was covered in a smooth substance that looked like putty to me. That stuff did it's job. No pain anywhere at all!! After getting home, I had to keep cold water in my mouth for four hours. Cheryl did a good job of keeping the glass filled and keeping me awake the couple of times I wanted to drift off. Since my mouth and lips were numb, I was making a mess. I always thought that someday I would end up in my recliner drooling all over myself, I just didn't think it would be so soon. Because of the steroids, I woke up at 3:30 Saturday morning and didn't go back to sleep until about 2 a.m. Sunday morning. Of course the blood sugar went sky high too from the steroids.

The surgeon told Cheryl the infection was worse than he expected (and I actually thought it was mostly gone from what it had been). He said there was a hole in the sinus cavity bigger around than a pencil eraser and it was just pumping out nasties. He said he cleaned the sinus all out and plugged the hole. He did three different bone grafts using decalcified freeze-dried bone. The processing of the bone includes demineralization in hydrochloric acid. The donor bone is obtained from a cadaver, that was previously screened for syphilis, hepatitis B and C, and HIV virus and antibody. After decalcification, it is made into a powder form which can be stored at room temperature for long periods of time. He then withdrew blood from my IV and used my own plasma to mix with the powdered bone. When they separate the plasma, they make sure it is platelet rich. How ironic for those of us with low platelets. Somehow this all engrafts in me to form new bone. I had a follow-up with him last Friday and he said everything looks good. I told him I was more sore on bottom. He thought that was odd too because most of the work was on top. He did say he found quite a bit of infection on bottom, too. Since that is still sore and the heavy duty antibiotics are now gone, I hope I will not have a continuing problem there.

Last week Cindy was out of town for work and Corbin was back in the oil fields up in New Mexico (he is a driller). So, when she is gone, we now watch Jonathan. With Jimmy living with us it can get a little crazy sometimes coordinating it all. Two different schools in two different towns with two different football practice schedules and two different weekday football game schedules with two different boys forgetting things that grandpa has to take to two different schools and two different boys needing help with math homework. Whew! But I sure do love 'em!

I think that pretty much catches things up. Coming up is the heart doctor this Thursday, another dental follow-up Friday, local oncologist blood tests October 22, oncology appointment October 29, and MD Anderson in Houston on November 12th.

Monday, October 01, 2007

CLLgle - A Leukemia Only Search Engine

Andy, a gentleman from the UK and a member of the CLLForum and CLLCfriends came up with a great idea several weeks ago and I am finally getting around to add this to my site. He designed a search engine using Google gadgets that searches only CLL related web sites and Blogs. It is a work in progress and he is adding sites for it to search all the time. I know I have searched on Google before and have come up with unrelated information and now this will help narrow your results. I have added this helpful search engine link to my blog and it can be found over to the right, under USEFUL LINKS. Once there use it just like you would use Google. If you don't find what your are looking for, because it does only search a limited number of sites, then you can always use regular Google search.

NOTE: I had to edit this post because the search box that use to be here no longer works. You must go to his site to use the search engine. Use the link over to the right under "Useful Links" or, just click HERE

Here is what Andy has to say about this search engine:

We've picked the best CLL Leukaemia and Cancer information sites to sort the CLL wheat from the chaff. No more results from the Centre for Lifelong Learning or the Central Lancashire League. Chronic Lymphocytic Leukaemia Search Engine searches 24 sites, including:,,,,

So go ahead and give it a try. I know folks end up on my blog through regular Google searches so if you didn't find what you wanted here, this tool just might get you where you want to go. (Oh, and no Andy does not misspell Leukemia. He uses the British spelling of Leukaemia.)