Grrr! What is wrong with these people? It is bad enough that we have to put up with spam in email, now we have to deal with it all over the place. Twice now, in the last couple of days, my blog has been hit by an automatic spammer. Earlier this week, 136 messages were added to the comments section throughout my blog with supposed compliments, but they also included a little link at the bottom that if you, my unsuspecting reader, clicked on it took you to gambling sites or insurance sites, and perhaps a few others because I only checked a few out. This afternoon, in less than two minutes, 198 comments were added with links to other sites, including pornography!
A few months ago, when I wrote about our trip to the Grand Canyon, a link was posted to tours out of Vegas to the Grand Canyon. At that time, I was able to track down the company and they assured me they would never do that. However, the very next time I mentioned the Grand Canyon, there was the link. This time I was able to prove it was them. Surprisingly, they never responded again.
In order to delete these comments, I have to go to each one individually and it is a three step process that is very time consuming! I guess I will be doing that for the next couple of hours, thanks to these people. So, what to do about it? Well, this Blogger site gives me a couple of choices. I could select the option that before your comments get published, I have to approve them. I don't like that option. The other option, the one I have chosen, is that when you want to post a comment, you will have to type a special word that is shown when you go to post a comment. Here is the explanation from the Blogger site:
"What this does is to prevent automated systems from adding comments to your blog, since it takes a human being to read the word and pass this step. If you've ever received a comment that looked like an advertisement or a random link to an unrelated site, then you've encountered comment spam. A lot of this is done automatically by software which can't pass the word verification, so enabling this option is a good way to prevent many such unwanted comments."
So, an additional step for my dear readers to by-pass people who have no sense of shame. Sorry about that!
Sunday, July 23, 2006
Tuesday, July 18, 2006
MD Anderson Visit and Current Chemo Round
Hello all. I am sitting in a hotel room in Houston, only a few blocks from MD Anderson. However this time I am here for my work all week. I arrived on Sunday and will leave Friday afternoon. Doing OK, but struggling just a little. I never sleep that well the first few nights in a hotel and combining that with the Prednisone steroid I am on...well, you know the story. At least I am staying awake so far in class, although I did feel myself getting frustrated today with some of the comments from some of the students in class. I always get more sensitive on the drugs.
We drove down here to MD Anderson last week Tuesday afternoon as I had lab scheduled for 8 a.m. on Wednesday morning. We took the hotel shuttle over Wednesday morning and arrived at the fast track lab about 7:20. They have moved it to the other end of floor six over to the left coming out of the elevator and their time starts at 7:00. I registered and was taken almost immediately. Well, my doc appointment wasn't until 2 but we had already checked out of the hotel, so we went down to the lobby to wait. We were by the fish tank area and Cheryl started on a puzzle and I read the paper and helped her some with the puzzle (I get too frustrated to work too long on them), watched the fish, and wandered around some. We got to meet Jenny Lou's husband for too short a time. Jenny Lou is a member of ACOR, both are on the CLL Forum and they live in Austin. We have been trying to figure out a time to go out for dinner for months now. May happen soon. He had just driven in from the airport and he didn't have very long before his appointment. He looked really good and said he was feeling great after such a rough time dealing with his CLL. He promised we would all get together soon in Austin. Then he headed upstairs and we did too, as soon as Cheryl finished putting the 500 piece puzzle together -- she is good at it. We checked in about 1:20 hoping we might get in early, especially since there were not many people in the waiting room at all! Wrong. We were called into the back about 2:45 and saw his nurse who checked all the paperwork and gave us a copy of the blood tests from the morning. I will post them below. They were terrific. Then we waited and waited. About 45 minutes later, his PA came in and interviewed me and asked about my treatment, why we had started and why I hadn't done FCR as recommended last year. She wanted to know how Dr. Wierda could help me now. She left and we waited at least another half hour for Dr. Wierda to come in. He asked me all the same questions. Even though my oncologist sends him copies of all his notes, he hasn't seen them. Luckily I had copies with me (that also showed him as cc at the bottom). At first he sounded like he was upset that I had even started treatment, but I showed him that we had followed all the signs to start that he had given me last year -- absolute lymph doubling of less than six months as shown by several consecutive tests, nodes continuing to grow, platelets below 100, etc. He then was OK with that. However he was very disappointed that I didn't do FCR and wanted to know why. I told him it was my choice as I wanted to start with something less toxic. I also said that Dr. Hamblin seemed to agreed with me even though he does believe in FCR for certain cases. I told him I knew many people were fighting lung infections, sinus infections and other infections after FCR even though they were in remission (primarily due to the Fludarabine component of FCR). He said people get them all the time anyway, especially sinus infections, without CLL. I also told him because I had mono many times I didn't want to risk hurting the T cells yet and having that cause problems. He poo-pooed that too as he said 90% of people carry the EBV virus. I told him I knew that, but the folks that had full-blown mono were more at risk, especially for transition to a much more aggressive form. He really didn't respond to that. He said that folks who do FCR as first time treatment have a much better chance of remission and much longer remission. I asked him about the fact that nothing has shown any advantage for long term survival. He said that is only because the expensive studies have not been done yet. He is convinced that FCR will show much better long term survival and even some "cures" once long term, "expensive" studies are started and completed. I mentioned how so many of the CLL experts even disagree on proper treatment in many cases and mentioned David Arenson (see his blog link over on the right) who had just completed a trip around the country consulting with many CLL experts who all had a different opinion for his treatment. He acknowledged there was often not a consensus and that he sometimes disagrees with his colleague, Dr. Keating. What can I say. He is totally sold on FCR (as is Dr. Keating). Anyway, he said since I have started down the path I chose, I needed to complete it. He suggested a bone marrow biopsy (BMB) in August. He also said I should consider a one month Campath mop up if the BMB indicated 30% or more of involvement and then another month after if needed. He did warn me that Campath is even more toxic than fludarabine. That really bothers me too. He wants me to come back before starting another full blown treatment to see what clinical trials might be going on then. He mentioned one that might start within a year with a drug I have not heard of and can't remember now. It starts with the letter O but that is all I can remember.
We ended up leaving Houston during rush hour and got home around 9:30 p.m. and then off to my local doctor and chemo the next morning.
All in all I am not sure what I got out of the Houston trip, other than an "I told you so" from Cheryl and another "I told you so" from my local doctor the next day. In fact my local doctor was concerned that I made it clear that it was my choice and not his not to do the FCR. He said he didn't want Dr Wierda to think he was some hick and wouldn't refer anyone else to him. SIGH. So all in all, I felt a little beat up. It will be much harder to follow my own path in the future.
Thursday's 8th round (and I hope last round for a long time) of chemo went fine. I did the benadryl by pill instead of infusion and thus avoided the very annoying restless leg syndrome. I also slept through most of it again. Then slept some more when I got home. And, amazingly, slept for 5 1/2 hours that night! I have never gotten more than one hour's sleep the first night before. Then the next night another six hours sleep!
I go for blood work again next week and see my local doc in a month. He is planning to do the bone marrow biopsy later in August and he really wants to do a PET Scan this time, too. He said it will tell him if the swollen nodes in my chest, stomach and groin are active or not. At least he wasn't thrilled with the Campath mop up approach either. I guess we will wait and see what the bone marrow biopsy says and I will do some more research, too.
Anyway, here are only the highlights from the blood test at MD Anderson as there were 48 separate things reported. I will post the things we usually look for and anything that was either high or low. Strangely, this report doesn't show what their normal range is. It only stated H for high or L for low.
White blood cell count 4.7
Red blood cell count 4.13 L
Hemoglobin 14.3
Hematocrit 40.1
Mean corpuscular HGB 34.6 H
Platelet count 126 L (but up from 81 two weeks ago)
Chloride serum 110 H
Glucose 184 H (that's my diabetes messed up and it was nearly 400 at one point today even after insulin, but that is the steroid effect.)
Eosinophil percent 5.0 H
Metamyelocyte percent 1.0 H
Anisocytosis Occasnl (red cells of unequal size)
Poikilocytosis Occasnl (red cells of abnormal shape)
Neutrophil absolute count 2.30 (first time in normal range in a long time)
Neutrophil percent 49.0
Lymphocyte absolute count 1.88
Lymphocyte percent 40.0
B2 Microglobulin, serum 1.6
Immunoglobulin IgG 465 L
Immunoglobulin IgA 70 L
Immunoglobulin IgM 21 L
As I said above, I am really pleased with this and feel like I have gotten a very good partial response. Even though it looks like a lot of red, most are only a very little off normal -- but then again, I am a little off normal myself, so I guess it fits well!
As usual, thank you so much for your support and especially your prayers.
We drove down here to MD Anderson last week Tuesday afternoon as I had lab scheduled for 8 a.m. on Wednesday morning. We took the hotel shuttle over Wednesday morning and arrived at the fast track lab about 7:20. They have moved it to the other end of floor six over to the left coming out of the elevator and their time starts at 7:00. I registered and was taken almost immediately. Well, my doc appointment wasn't until 2 but we had already checked out of the hotel, so we went down to the lobby to wait. We were by the fish tank area and Cheryl started on a puzzle and I read the paper and helped her some with the puzzle (I get too frustrated to work too long on them), watched the fish, and wandered around some. We got to meet Jenny Lou's husband for too short a time. Jenny Lou is a member of ACOR, both are on the CLL Forum and they live in Austin. We have been trying to figure out a time to go out for dinner for months now. May happen soon. He had just driven in from the airport and he didn't have very long before his appointment. He looked really good and said he was feeling great after such a rough time dealing with his CLL. He promised we would all get together soon in Austin. Then he headed upstairs and we did too, as soon as Cheryl finished putting the 500 piece puzzle together -- she is good at it. We checked in about 1:20 hoping we might get in early, especially since there were not many people in the waiting room at all! Wrong. We were called into the back about 2:45 and saw his nurse who checked all the paperwork and gave us a copy of the blood tests from the morning. I will post them below. They were terrific. Then we waited and waited. About 45 minutes later, his PA came in and interviewed me and asked about my treatment, why we had started and why I hadn't done FCR as recommended last year. She wanted to know how Dr. Wierda could help me now. She left and we waited at least another half hour for Dr. Wierda to come in. He asked me all the same questions. Even though my oncologist sends him copies of all his notes, he hasn't seen them. Luckily I had copies with me (that also showed him as cc at the bottom). At first he sounded like he was upset that I had even started treatment, but I showed him that we had followed all the signs to start that he had given me last year -- absolute lymph doubling of less than six months as shown by several consecutive tests, nodes continuing to grow, platelets below 100, etc. He then was OK with that. However he was very disappointed that I didn't do FCR and wanted to know why. I told him it was my choice as I wanted to start with something less toxic. I also said that Dr. Hamblin seemed to agreed with me even though he does believe in FCR for certain cases. I told him I knew many people were fighting lung infections, sinus infections and other infections after FCR even though they were in remission (primarily due to the Fludarabine component of FCR). He said people get them all the time anyway, especially sinus infections, without CLL. I also told him because I had mono many times I didn't want to risk hurting the T cells yet and having that cause problems. He poo-pooed that too as he said 90% of people carry the EBV virus. I told him I knew that, but the folks that had full-blown mono were more at risk, especially for transition to a much more aggressive form. He really didn't respond to that. He said that folks who do FCR as first time treatment have a much better chance of remission and much longer remission. I asked him about the fact that nothing has shown any advantage for long term survival. He said that is only because the expensive studies have not been done yet. He is convinced that FCR will show much better long term survival and even some "cures" once long term, "expensive" studies are started and completed. I mentioned how so many of the CLL experts even disagree on proper treatment in many cases and mentioned David Arenson (see his blog link over on the right) who had just completed a trip around the country consulting with many CLL experts who all had a different opinion for his treatment. He acknowledged there was often not a consensus and that he sometimes disagrees with his colleague, Dr. Keating. What can I say. He is totally sold on FCR (as is Dr. Keating). Anyway, he said since I have started down the path I chose, I needed to complete it. He suggested a bone marrow biopsy (BMB) in August. He also said I should consider a one month Campath mop up if the BMB indicated 30% or more of involvement and then another month after if needed. He did warn me that Campath is even more toxic than fludarabine. That really bothers me too. He wants me to come back before starting another full blown treatment to see what clinical trials might be going on then. He mentioned one that might start within a year with a drug I have not heard of and can't remember now. It starts with the letter O but that is all I can remember.
We ended up leaving Houston during rush hour and got home around 9:30 p.m. and then off to my local doctor and chemo the next morning.
All in all I am not sure what I got out of the Houston trip, other than an "I told you so" from Cheryl and another "I told you so" from my local doctor the next day. In fact my local doctor was concerned that I made it clear that it was my choice and not his not to do the FCR. He said he didn't want Dr Wierda to think he was some hick and wouldn't refer anyone else to him. SIGH. So all in all, I felt a little beat up. It will be much harder to follow my own path in the future.
Thursday's 8th round (and I hope last round for a long time) of chemo went fine. I did the benadryl by pill instead of infusion and thus avoided the very annoying restless leg syndrome. I also slept through most of it again. Then slept some more when I got home. And, amazingly, slept for 5 1/2 hours that night! I have never gotten more than one hour's sleep the first night before. Then the next night another six hours sleep!
I go for blood work again next week and see my local doc in a month. He is planning to do the bone marrow biopsy later in August and he really wants to do a PET Scan this time, too. He said it will tell him if the swollen nodes in my chest, stomach and groin are active or not. At least he wasn't thrilled with the Campath mop up approach either. I guess we will wait and see what the bone marrow biopsy says and I will do some more research, too.
Anyway, here are only the highlights from the blood test at MD Anderson as there were 48 separate things reported. I will post the things we usually look for and anything that was either high or low. Strangely, this report doesn't show what their normal range is. It only stated H for high or L for low.
White blood cell count 4.7
Red blood cell count 4.13 L
Hemoglobin 14.3
Hematocrit 40.1
Mean corpuscular HGB 34.6 H
Platelet count 126 L (but up from 81 two weeks ago)
Chloride serum 110 H
Glucose 184 H (that's my diabetes messed up and it was nearly 400 at one point today even after insulin, but that is the steroid effect.)
Eosinophil percent 5.0 H
Metamyelocyte percent 1.0 H
Anisocytosis Occasnl (red cells of unequal size)
Poikilocytosis Occasnl (red cells of abnormal shape)
Neutrophil absolute count 2.30 (first time in normal range in a long time)
Neutrophil percent 49.0
Lymphocyte absolute count 1.88
Lymphocyte percent 40.0
B2 Microglobulin, serum 1.6
Immunoglobulin IgG 465 L
Immunoglobulin IgA 70 L
Immunoglobulin IgM 21 L
As I said above, I am really pleased with this and feel like I have gotten a very good partial response. Even though it looks like a lot of red, most are only a very little off normal -- but then again, I am a little off normal myself, so I guess it fits well!
As usual, thank you so much for your support and especially your prayers.
Friday, July 14, 2006
Four more Ohio Pictures
I got a couple of emails that said the picture of my grandson with my mom didn't show up. I don't know what the problem is. I could see it on my laptop and on my work computer, but not on my home computer. So I will try republishing it along with three more pictures. The first is Jimmy and his great grandmother, my Mom. The second is me being silly, the third is Lori, her new husband, his mom, and my brother and his wife. The fourth picture is just one that I thought turned out real cute. The dog seems to be posing. Hope these work for you. 
Tuesday, July 11, 2006
More Ohio Trip Pictures
Monday, July 10, 2006
Ohio Trip
Our trip to Ohio over the long 4th of July weekend for my niece's wedding was terrific. Cheryl, our grandson Jimmy, and I flew out of Austin very early Friday morning and arrived in Columbus, Ohio, about 11 am. I slept most of the time on the plane. Woke up for peanuts, coffee, to change planes, more peanuts and more coffee. We picked up our rental car and drove to my brother, Bob's home in West Chester. We got there around 2 p.m., where I proceeded to doze sitting up on his couch most of the rest of the day. As other guests arrived, I was oblivious. I know Cheryl must have been thinking what a great weekend this was going to be. However, on Saturday, the day of the wedding, I was well rested - obviously- and stayed awake all day. We visited with family, Jimmy swam and then we got ready for the wedding in the evening. Unfortunately, my Mom had a dizzy spell and became quite ill. It is an inner ear thing that she hasn't had in quite awhile. We didn't know about it until we arrived at the wedding location. My older brother, Jim, and his wife, Barb, stayed at home with Mom.
The wedding was really nice and my niece, Lori , made a beautiful bride. The actually ceremony was outside and was very short, which was good because it was very warm. Actually the entire time it was hotter up there than it was here in Texas. Very strange. The reception was great with good food and fun times. My youngest brother, Bill, who has been is 8 Broadway musicals, sang two fantastic songs. Jimmy even caught the garter. He didn't know what it signified until later. At least he didn't have to put it on the girl who caught the flower bouquet. Cheryl, Jimmy and I left fairly early to get some
rest for the next day's activities.
The next day was a blast! We started out with a miniature golf tournament. I think I came in second, but it could have been last, who knows. Chemo brain is my excuse! Our "team" came in first. Then there was a "longest drive" contest on the driving range. Cheryl and I went back to Bob's house because a) it was too darn hot out there, and b) Cheryl has never played golf and I have only played golf two or three times in my life and we didn't stand a chance anyway. After everyone arrived back at Bob's we ate lots of
good food, visited with everyone and some swam in his pool.
About 5 p.m. it was time for the lip sync contest. This is something that Bob's wife's family does each year when they have their reunion. I didn't realize how far everyone goes with costumes, etc. My mom, who was feeling better then, even participated doing a number called, "Rapping Granny." All the acts were fantastic. We had a magic act, a family band, sisters, Bob and his family portrayed "The Streak" that had us in stiches, and my youngest brother Bill and David doing the Titanic had us rolling on the ground laughing. Bill was the Titanic and David was the iceberg. I haven't laughed that hard in a long time. I just tried to upload the pictures from the contest and it won't take anymore. Not sure why, so I will try putting them as another post following this one. I am also going to put a picture up with Jimmy and Mom. I think it shows the special bond they have. (Oops, the pictures are above this post.)
Bob and Priscilla did a fantastic job of hosting all those folks. Some stayed in hotels, many stayed in their home, and some, including us, stayed at a friends home while their friends were out of town! They had trophies and prizes for everyone!
We got up early Monday morning and drove back to Columbus to catch our flight back to Austin. The plane was delayed taking off, but it was OK because we had a scheduled three hour layover in Chicago. We got back home about 7 p.m. Monday evening. We spent the 4th of July just resting and then back to work on Wednesday.
I go to MD Anderson Wed, chemo Thursday, and all next week in Houston for my work. I will post updates then and try not to be as slow. Actually, I have done real well lately, I think. Not counting this, three posts in two weeks. Not bad, huh?
The wedding was really nice and my niece, Lori , made a beautiful bride. The actually ceremony was outside and was very short, which was good because it was very warm. Actually the entire time it was hotter up there than it was here in Texas. Very strange. The reception was great with good food and fun times. My youngest brother, Bill, who has been is 8 Broadway musicals, sang two fantastic songs. Jimmy even caught the garter. He didn't know what it signified until later. At least he didn't have to put it on the girl who caught the flower bouquet. Cheryl, Jimmy and I left fairly early to get some
rest for the next day's activities.
The next day was a blast! We started out with a miniature golf tournament. I think I came in second, but it could have been last, who knows. Chemo brain is my excuse! Our "team" came in first. Then there was a "longest drive" contest on the driving range. Cheryl and I went back to Bob's house because a) it was too darn hot out there, and b) Cheryl has never played golf and I have only played golf two or three times in my life and we didn't stand a chance anyway. After everyone arrived back at Bob's we ate lots of
good food, visited with everyone and some swam in his pool.About 5 p.m. it was time for the lip sync contest. This is something that Bob's wife's family does each year when they have their reunion. I didn't realize how far everyone goes with costumes, etc. My mom, who was feeling better then, even participated doing a number called, "Rapping Granny." All the acts were fantastic. We had a magic act, a family band, sisters, Bob and his family portrayed "The Streak" that had us in stiches, and my youngest brother Bill and David doing the Titanic had us rolling on the ground laughing. Bill was the Titanic and David was the iceberg. I haven't laughed that hard in a long time. I just tried to upload the pictures from the contest and it won't take anymore. Not sure why, so I will try putting them as another post following this one. I am also going to put a picture up with Jimmy and Mom. I think it shows the special bond they have. (Oops, the pictures are above this post.)
Bob and Priscilla did a fantastic job of hosting all those folks. Some stayed in hotels, many stayed in their home, and some, including us, stayed at a friends home while their friends were out of town! They had trophies and prizes for everyone!
We got up early Monday morning and drove back to Columbus to catch our flight back to Austin. The plane was delayed taking off, but it was OK because we had a scheduled three hour layover in Chicago. We got back home about 7 p.m. Monday evening. We spent the 4th of July just resting and then back to work on Wednesday.
I go to MD Anderson Wed, chemo Thursday, and all next week in Houston for my work. I will post updates then and try not to be as slow. Actually, I have done real well lately, I think. Not counting this, three posts in two weeks. Not bad, huh?
Thursday, July 06, 2006
Treatment Delayed
Just a quick note before heading off to bed. My 8th chemo round is delayed until next week Thursday, July 13. The doctor was not in today and they tried calling me while we were in Ohio to change it to last Monday. Actually they did change it and then called my work phone and wondered why I wasn't there. Duh, being in Ohio was why we couldn't do it on Monday in the first place. They knew that, but forgot, I guess.
Anyway, we drive down to Houston next Tuesday afternoon for my appointment at MD Anderson with Dr. Wierda on Wednesday, July 12. Then drive back home for chemo the next day. Then on Sunday afternoon I drive back to Houston and I will be there all week for my work until Friday afternoon. Now that week should be interesting as I will be on steroids all week!!!!
I will post this weekend about our trip to Ohio. It was great!
One more comment about little Hanna, about whom I wrote last time. Here is a poem written by Patsy Carpenter who was an on-line prayer partner of "Aunt Bebbie." This was used for Hanna's celebration service bulletin .
A Tribute To Hannah
A precious child named Hannah
Lived a short while on this earth
And I'm sure her parents
felt that she was special from her birth.
But they might not have imagined
all the people she would touch
for to know her was to love her
and we loved her oh so much.
The things she did and said while here
were cute,sweet and kind
and I feel tremendous loss
because one life she touched was mine.
May the happy memories
help heal us all the while
Like her big heart of compassion,
sense of humor, and her smile.
Hannah blessed so many
who will miss her all their life
but we're thankful that she's joyful now
with no more pain or strife.
I'm a better person now
because of Hannah Grace
and I know one day in heaven
I will see her smiling face.
May we help to carry out her wish
and the love of Jesus show,
and tell the world about Him
so that everyone can know.
Again, please continue to pray for the entire family as they struggle to adjust.
Anyway, we drive down to Houston next Tuesday afternoon for my appointment at MD Anderson with Dr. Wierda on Wednesday, July 12. Then drive back home for chemo the next day. Then on Sunday afternoon I drive back to Houston and I will be there all week for my work until Friday afternoon. Now that week should be interesting as I will be on steroids all week!!!!
I will post this weekend about our trip to Ohio. It was great!
One more comment about little Hanna, about whom I wrote last time. Here is a poem written by Patsy Carpenter who was an on-line prayer partner of "Aunt Bebbie." This was used for Hanna's celebration service bulletin .
A Tribute To Hannah
A precious child named Hannah
Lived a short while on this earth
And I'm sure her parents
felt that she was special from her birth.
But they might not have imagined
all the people she would touch
for to know her was to love her
and we loved her oh so much.
The things she did and said while here
were cute,sweet and kind
and I feel tremendous loss
because one life she touched was mine.
May the happy memories
help heal us all the while
Like her big heart of compassion,
sense of humor, and her smile.
Hannah blessed so many
who will miss her all their life
but we're thankful that she's joyful now
with no more pain or strife.
I'm a better person now
because of Hannah Grace
and I know one day in heaven
I will see her smiling face.
May we help to carry out her wish
and the love of Jesus show,
and tell the world about Him
so that everyone can know.
Again, please continue to pray for the entire family as they struggle to adjust.
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