Saturday, December 10, 2005

Still Watching and Waiting I hope!

Sorry I didn't post the "catch up," yesterday. Two reasons actually. First, we went to my wife's office Christmas party last night so there wasn't much time.

Second, I truthfully didn't feel much like posting. I went and had my CT scan in the morning and the three-month blood work. Unexpectedly, I received the results of the blood work before my hematology/oncology appointment next week. Maybe that wasn't such a good idea because the results bummed me out. To my untrained eye, the results don't look all that great. White blood cells jumped 10k since September -- up to about 38k, platelets down to 100 and lymphocytes have doubled in 6 months -- up to 29.4k (normal 1.0 to 0.6) and are now up to 89.6%. Other indicators all got worse except the red blood cells and HGB. Although still low, they did get somewhat better. Neutrophils and other stuff that fight infections have gotten pretty low. Not sure why I'm not getting infections yet. Must be all the prayers! Overall, the report bummed me out some, but I need to wait and have it explained to me on Wednesday. I am pretty sure the doubling of the lymphocytes is a pretty strong indicator to start treatment. The white blood cell count isn't that big a concern as I have read many times they do not treat based on those counts, even though 4.0 to 11.0 is where it is supposed to be. I know from reading on the ACOR list that many fellow CLLers have had those counts way up over 100 and even much higher. We shall see what it all means for me on Wednesday.

OK, back to try to catch everything up-to-date. If you remember, my Endocrinologist, Dr. Scumpia, had done a carotid artery test (sonogram) test that showed quite a bit of blockage on one side of my neck. She put me on Niacin tablets to take at night and scheduled me to come back in August for another sonogram. The August test showed tremendous improvement – most of the blockage was gone! She was elated that the Niacin worked so well. So elated she doubled the dosage to 1,000 mg. The next night, before I had gotten the new refills to double the dosage, I woke up at 2 a.m. My skin felt like it was on fire. I went in and looked in the mirror and I was red, like sunburn from my face all the way down to the tops of my feet. My skin felt warm to the touch to me but I took my temp and it was actually low - 95.4. I got in the shower to try to relieve the feeling on my skin and the water hitting it felt just like it does if you have sunburn. After I got out of the shower, it started hurting/stinging like I had gotten into a bunch of nettles (poisonous plant). After about 10 minutes it just started itching like crazy. I was itching all over and really felt like I was going nuts. Cheryl helped calm me down. I found some over-the-counter antihistamine and took that and tried to get some sleep and forced myself not to scratch any more. I finally fell asleep and in the morning I was absolutely fine again -- no redness, no itching, nothing. The next morning Cheryl confessed that she couldn't get her eyes focused enough at 2 a.m. to really see if I was red or not - LOL. But she did come up with the antihistamine solution, bless her heart! I went and asked my friends on ACOR if anyone hade ever had this happen (told you they were great support) and found out from several people that it was a side effect to my Niacin. I had been taking it all that time and it had never happened before. I was nervous taking the double dosage. But, I learned that by taking an aspirin with it, you can avoid, or reduce the effects. Since doubling the dosage, I have had some minor reactions like that night, but not even close to what it was that night.

On September 21st, I had another appointment with Dr. Netaji. Things were still looking good! Most of the important indicators only got slightly worse and one got better. Both the white blood count and lymphocyte count went up by 4,000 each and the red blood cell count went down very slightly. My platelet count went up to 127. All in all good news.

In October, we went on a trip. I figured if I wasn’t going to be getting chemo anytime soon, I could afford to take a couple of vacation days. We had free frequent-flyer airline tickets. My wife, youngest daughter Cindy, grandson Jonathan and I took a four-day weekend and flew out to Las Vegas and then went on to the Grand Canyon. Cindy's husband, Corbin, was supposed to go with us, but he could not break away from the oil fields. Going to the Grand Canyon is something I always wanted to do. It was an absolutely FANTASTIC trip! Pictures can not do the Grand Canyon justice. It just takes your breath away with its magnificence and beauty. I don’t gamble, but I did enjoy walking, and walking and walking up and down the strip in Las Vegas and looking at all the hotels. We went to a comedy magic show that was great and then went to an “oldies” musical called “Forever Plaid.” We really enjoyed that too. My grandson liked Circus Circus and liked playing the games and watching the circus acts. Cindy pushed us into going on this trip now "before it is too late" (she made all the reservations and paid for a lot of the trip) so I designated it the "Daddy's Dying" trip. I told her we were going back in ten years for a "Daddy's Not Dead Yet" trip. I had avoided using the “Daddy’s dying trip” designation around Cheryl but did slip up once. She didn’t think it nearly as funny as my daughter and I did. I told Cindy that since I had now crossed something off my "want to/must do" list, other things needed to be added because we couldn't let the list run out. I also reminded her that I have always wanted to go on a cruise and reminded her of the Hawaii trip -- made sure my other daughter was told that too! -- HA!

Well, this finally brings me up to date. Thanks for being patient if you have read through all of this. I have found it to be strangely therapeutic.

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