Tuesday, May 30, 2006


Sorry it has taken me so long to update. I have been busy lately and VERY tired so when I get on the computer it is usually just to check mail, check the blogs I keep up with to see if there are new posts, and check the new posts on the CLL Forum. By then it is late. Over the holiday weekend I didn't do much but sleep late, take long naps and sleep some more in the evening. We did go to church and then out to eat on Sunday, but that was about it. I have gotten a couple of emails wondering about an update, so here goes.

I have been in class the last two weeks. The first week was here in Austin and last week I flew out to El Paso and taught class all week. I was tired every night and last week I would come back to the hotel room and crash for awhile, get up and fix something to eat in my hotel room -- I had a suite with a full kitchen -- check mail and crash again. By Thursday I was even feeling very tired in class. Usually I feel energized while teaching but this time it was a struggle the last two days. I guess it was because it was so close to the last (hopefully) chemo round. This time I tapered off the steroids and finished off the Wednesday I was in class here in Austin. That worked much better this time and I didn't have the big crash, physically and emotionally, that I experienced the last couple of rounds. I got my blood work a week ago Monday just before flying out to El Paso. Overall it was very good, especially the lymphocytes and the white blood counts. Platelets are still low, but not in the real danger area. Other areas were just slightly off. I thought the red blood cells and hemoglobin were going to be really low, indicating anemia, because I was so fatigued, but the red cells are only a little low and the hemoglobin number is perfect. I will post most of the numbers at the end for those who understand them. As you will see, my inner mouse/hamster continues to do his/her work well. This is a strange disease. There are other patients with all normal counts experiencing severe fatigue and others, who are anemic, but aren't experiencing much fatigue at all. I just wish I felt as good as everyone tells me I look. I am hoping that in a couple of weeks I will begin to regain energy.

Thankfully I tolerated all six chemo rounds MUCH better than many do. I never experienced nausea and for the last two rounds didn't even take the nausea pills as a precaution. I gained weight again this round! Now it is time to get serious and start losing the weight I gained on chemo because all my new shirts and pants I bought after losing weight are getting very tight. Some I can't wear now. But it is a small price to pay for getting through the treatments so well.

I will see the doctor next Monday, just before flying back out to El Paso for another week. I am hoping he doesn't suggest more chemo this time because I really think the counts are mostly very good. If he does, then I will make an appointment at MD Anderson to go back and see Dr. Weirda for his suggestions/opinion.

I hope all of you who are reading this from the U.S. took some time yesterday, Memorial Day, to remember all the men and women who paid the ultimate price with their lives while in the service of their country. We owe them so much for the freedoms we have today. There are many young men and women who are still paying that price today. I pray for the families they have left behind. Today is the traditional Memorial Day before congress changed it in the early 70's. I don't think the change was good because now it is just another three day holiday weekend for many folks and they never give a thought to what it is supposed to be about. When I was a little kid, my folks always visited the cemeteries and put fresh flowers or flags on the graves of our relatives. We always walked around and found markers of those who died in war. It was a special day back then. Yesterday our flag, in front of our home, flew at half mast until noon, as prescribed by the proper flag etiquette for the day.

Here are the blood results and I hope I won't take as long to post the results of next Monday's meeting with my hematologist/oncologist.

First is the count followed by this labs normal range. Any outside of normal are posted in red:
WBC 4.3 (4.0-11.0)
NEU# 1.9 (3.0-7.0) infection fighters
NEU% 44.5 (40.0-74.0)
LYM# 1.6 (1.0-4.0) *absolute number
LYM % 37.8 (19.00-48.00)
MONO# 0.7 (0.1-0.6)
MONO% 15.1 (3.0-11.0)
EOS# 0.0 (0.1-0.4)
EOS% 1.1 (0.0-7.0)
BASO# 0.1 (0.0-0.1)
BASO% 1.5 (0.0-2.0)
RBC 4.38 (4.70-6.10)
HGB 15.00 (13.00-17.00)
HCT 41.20 (37.00-49.00)
MCV 94.0 (80.00-100.00)
MCH 34.3 (27.0-34.0)
MCHC 36.5 (32.0-36.0)
RDW 12.1 (11.0-15.0)
PLTS 99 (140-400)

Again, thank you for your expressed concern and your prayers. I truly believe it is because of you and God's grace I tolerated the chemo so well.

Sunday, May 14, 2006

Happy Mother's Day

Here am I with two of the most important mothers in my life. My Mom, who is 91, and my wife who might be upset if I tell you her age (hint: she is slightly younger than me, but only by two years - ha!) I can't tell you how grateful I am to have these two in my life. My parents raised a wonderful family who have remained close and supportive throughout the years. It was because of the example of our parents that we did so well. Even when Dad was working two jobs to support a family of five boys, Mom was there to take us to church every Sunday, even when Dad was working. She made sure we had the spiritual nurishment we needed. She has unconditional love for all of us and still, like all moms, worries about us. She has been staying with us since January and on Tuesday left to go to Ohio for a few months with a younger brother, Bob. We will miss here and pray she will be able to come back again next year as she usually does. Before Dad died, they used to come down for a few months every year. Then for his last two years, Dad wasn't able to travel. When Dad died in November of 2003, from my type of leukemia, several other cancers, and a very bad heart, she again came down that next January. This was her third year spending January to May with us. She is in pretty good health except for the terrible arthritis in her knees and hands.

My wife is a fantastic mother to our girls and grandmother to our grandkids. She bends over backwards to do anything for them. Again, a mother's love has no bounds. Our grandkids adore her, and they should. She spoils them with only a love a grandmother can display. And yet, she still has plenty of love left over for me. God blessed me with the finest lady I could ever have found to be the mother to my children.

Happy Mother's Day to all of you mothers reading this.

Thursday, May 11, 2006

Last Chemo Treatment for Awhile???

Sorry for the delay in getting this posted. I should be feeling really happy that I am doing the sixth and supposedly last round of chemo. But, I am just feeling BLAHG! (A term David E. coined in his Blog - a combination of the words blog and blah.) Maybe I can blame it on the steroids, because that is how it does make me feel, very emotional. At least the grumpies haven't hit yet, just the 'downer' feelings.

The infusions went well again on Monday. Just some restless leg/foot syndrome where I had to keep wiggling my feet when I was awake. Fortunately I slept through most of it. I only got 30 minutes sleep from Monday afternoon until about 2 a.m. Wednesday. But I did sleep later on Wednesday morning and then went into work for a little while and I got about six or seven hours last night. I worked from home today, but plan to go in to the office tomorrow. I have taken no nausea medicine, other than what they gave me in the infusion through my port. That really, really is a blessing!

There is a slightly different plan this time with the Prednisone steroids. Every other time I took 80 mg for five days and then quit cold turkey. Well, last time I crashed pretty hard on Sunday afternoon and particularly on Monday. When I told my oncologist about that he changed the regime. I will take the 80 mg for four days and then reduce it every day after to 60 mg, then 40 mg, then 30 mg, then 20 mg, then 10 mg, then 5 mg. This should avoid the crash, but it does make it go for 10 days. I sure hope the moodiness decreases each day with it. I am supposed to teach a class next week and I can see me getting upset with participants, or, perhaps worse, crying if they don't answer a question correctly - HA! The week after that I fly out to El Paso to teach another week. But I will not return to El Paso the week following that one as I had expected.

I will have more blood work done early morning on the 22nd, just before heading to the airport. However, I am not sure how accurate that will be because I will again have just come of the steroids a few days before and that always skews the results. Then in June, I return to the doctor and he will do more blood work and we will figure out what to do from there. Again, he is not as happy with my results as I am. He thinks I only have a partial response. As I told him, I think his aim of treatment and my aim of treatment are different. I would rather have a good partial response than be in a deeper remission with the leukemia but keep getting sick with all kinds of infections and pneumonias like happens to many folks that have done the treatment he wants. As I said, that is something I want to hold in reserve when nothing else works. So far, no treatment has shown any advantage for survivability. So, I am focusing on quality. At any rate, if he pushes hard for that, I will go for a second opinion at MD Anderson. Since he did back off on the treatment talk this time, I have not made an appointment yet. We will see what the blood work looks like in June. At least it is nice knowing I don't have another treatment coming up in a couple of weeks. I usually start feeling better just in time to start the next round, even though I don't seem to come back up as far each time. But since I won't be infused again, I expect to just start feeling better and better.

Well, for those who understand, here are Monday's test results and I know MANY of my fellow CLLers would absolutely love to have these results. (Just wish my doctor loved them as much. Very strange.)

Results first, this labs normal range next - this labs normal range is quite different from the lab downtown that I use on the off-weeks. I also put in red anything low or high. There are only four of those and they are not bad at all.

WBC 4.4 (4.1-10.9)
LYM 2.4 (0.6 - 4.1) This is the absolute number - the important one
LYM 54.8% (10.0 - 58.5%) This is the one my doctor doesn't like
MID 0.3 & 6.8% (0.0-1.8) (0.1-24.0%)
GRAN 1.7 & 38.4% (2.0-7.8) (37.0-92.0%)
RBC 4.42 (4.20-6.30)
HGB 14.5 (12.0 - 18.0)
HCT 43.0% (37 - 51%)
MCV 97.3 (80.0 - 97.0)
MCH 32.8 (26.0 - 32.0)
MCHC 33.7 (31.0 - 36.0)
RDW 13.8% (11.5 - 14.5%)
PLT 101 (140 - 440) He doesn't like this one, either
MPV 9.0 (0.0 - 99.8)

I think my inner kung-foo fighting mouse/hamster needs an extra helping of cheese for all the work the little fellow has done!

In fact, he may really be...