Tuesday, November 28, 2006
So, what has been happening? Well I got some great news yesterday -- NO MORE CHEMO at the very least until the beginning of next year, and perhaps even longer. I wasn't sure what to expect as my neck nodes are starting to return, although not as large as they were before, and I have been much more tired lately. I almost never get through an early evening without falling asleep in my chair a couple of times and most Saturdays consist of a couple of naps, even after nine to twelve hours sleep!
My blood work looked better than I was expecting and I think better than my doctor was expecting. My platelets did drop below 100 again, darn. But the rest didn't look too bad. I am only slightly anemic and I thought it would show more just based on how tired I am. Five areas were out of normal, but not too far. I won't go back for more blood work until January 2, and then will see the doctor the next week. Christmas without chemo is a very good thing!
I did have a strange rash that developed that had my doctor quite concerned. My legs started itching last Wednesday and got progressively worse. By Sunday afternoon, I had a rash up and down both legs, around my waist, on the back of my shoulders and it was starting down my arms. I would wake up in the night scratching and going nuts. I was taking Benadryl pills and putting Benadryl cream on it that helped some. Monday my ankles and feet were very red and splotchy. My oncology doctor wanted me to get into the dermatologist right away. He said if I couldn't get in to call him and he would make it happen. Well, I got in this morning. But, just like going to the dentist, it was MUCH better this morning. My feet and ankles were still red, but they never did itch. The rest of the rash was fading. The dermatologist wasn't sure what it was, but thought it was a skin infection. The redness on my feet wasn't actually a rash like I thought, but leaking capillaries under the skin. She said that was in reaction to the infection. She gave me a couple of prescriptions and is having me change my bath soap to an antibacterial gentle soap. I have a huge tub of prescription cream to stop the itching. It is always something.
Trivia fact from Wikipedia:
The total length of capillaries in an average adult human is approximately 42,000 km (25,000 miles), which if laid out in full would encircle the entire equator of planet Earth with some 1000 miles to spare. And you thought you wouldn't learn anything here today!
Both my daughters are having some medical problems too. Cindy will be having a surgical procedure later this week and Cheri is dealing with some things that could be a possible tumor. However, the doctor is taking an approach with medication to see if things get better. She won't have another ultrasound until January to see if whatever it is has shrunk. Rather worrisome for Mom and Dad. Her medication hasn't been allowing her to sleep well for the last couple of weeks and that is very frustrating for her.
Yesterday was the final day for all the repairs at the house -- hooray! And we even had a water softener installed last night. My dermatologist was pleased to hear that.
I hope your Thanksgiving was a blessed time with family and friends and that you took the time to reflect on all that you have to be thankful for. No matter what our circumstances, there is much for which we can give thanks. As the old hymn says, "Count your many blessings and see what God has done." I have to remind myself of that occasionally when I start to feel sorry for myself. We can get ourselves really bogged down in negativity if we let ourselves go. Nothing wrong with a little pity party once in a while, but that party can't go on for hours on end. The neighbors will start to complain if you let that happen!
Sunday, October 29, 2006
I am carrying a white balloon as a survivor, and they are carrying red balloons as supporters. My shirt is red because I raised over a thousand dollars on my site. We all wore stickers that showed who we were walking for -- me and in memory of my dad. Of course I was also walking in honor of all my friends who are suffering from CLL who I have met on the CLL forum and on the ACOR site and in memory of those who have died. I have known too many who passed away in the last couple of years. It was quite a sight, turning the corner and looking back at a couple of thousand lit balloons bobbing in the air. So many stories behind those balloons, I am sure.
As we were walking on our first trip around the stadium, Jimmy started crying. We asked him why and he said he was sad for me and he was missing his "Mo-Papa," my dad. He is such a great, caring boy. Actually all three grandkids are quite caring. Their parents have done well with them, teaching them to care for others. When the boys were very little, they started calling me Papa. When we were trying to explain the relationship of my dad to them as being their great grandfather, we told them that he was their Mommy's Papa. One of them looked at my Dad and said, "Mo-Papa?" meaning more Papa. Ever since then my folks were known as Mo-Papa and Mo-Nanny. By the way, my Mom was 92 this week and she is talking about coming down here with us again this year for a few months.
So where have I been for the past six weeks and why haven't I posted? I have been traveling for four out of the six weeks. I was in San Angelo, Houston, El Paso, and Lake Charles. All for either four days or five days. The first three were for my work and the last was with Cheryl and a group from her work. One of the weeks home I was in a trainers' meeting all week. The other weeks seemed to be taken up with various doctor, dentist, optometrist and other appointments. Also we have been having repairs done at the house as a result of a leaking air-conditioner that caused part of a ceiling to collapse clear back in August. The contractors finally were able to schedule us. We had to move everything out of the living room/dining room so dry wall could be replaced, carpeting could be replaced and the walls and ceiling painted. They are painting the ceiling through most of the house as we have an open floor plan and there wasn't a place to stop. We decided to take this time to do a little remodeling too! So, bottom line is that I have just been too tired to get on the computer most nights like I usually do. However, there really is nothing new to report health wise from me. I am just enjoying this break from chemo treatments. I am also not keeping up very well with the folks on my CLL Forum and Acor sites.
Speaking of the CLL Forum, so many of my friends there have had to go into treatment in the last month or two. Several are not doing too well and a few are even in the middle of bone marrow or stem cell transplants. I haven't been keeping up with them like I should, either.
Some good news, though. David E. raised over $20,000 for prostate cancer research with a golf tournament he put on. Last I heard, someone was going to match that so he really raised over $40,000! If you remember, David is a fellow I have written about several times who is fighting advanced prostate cancer. A link to his Blog is over on the right. He is the one from whom I stole his motto -- Faith, Love, Hope, Win! He also got some fairly good news this week. His PSA number dropped 40% in the last four weeks, although it is still very high at 51.48. It was up to 83.97 (under 4 is normal). What this means for him is that he will continue his current treatment and is able to avoid harsh chemo treatments for a while longer. Keep him and his family in your prayers.
Well, I will try to do better with keeping my scattered family and friends up to date. A week from tomorrow, Sunday, I fly down to McAllen to do a week-long training. At least for this one I will have co-trainers so I won't be doing it all day long each day.As always, thank you so very much for your prayers and support.
Sunday, September 17, 2006
Light The Night Walk is one of the major fundraisers that the Leukemia and Lymphoma Society (LLS) has each year at many locations around the country. This year's local walk is at the Dell Diamond on October 28, 2006.
I walked for the first time last year and was able to raise over $2600 with the support of my fantastic family, friends and co-workers. The LLS supports patients and families of those who are battling various forms of blood cancers - leukemia, lymphoma and myeloma. They help fund all kinds of research to find a cure for these diseases. Seventy five percent of the money raised goes directly to patient support and research. Local chapters have paid staff and many volunteers.
This year my wife, daughters, and I have formed a team and will walk as the Wagner Family Team. Supporters carry red balloons and survivors carry white balloons. The local society asked me to be one of their Honored Patients this year. They were looking for someone in each age category and I guess I fill the bill for the the old guy category. Most individuals who are walking and raising funds do so in memory of or in honor of someone they know who either died from a blood cancer or who is surviving from blood cancer. However, there are many corporate and school teams walking who do not know anyone, so the "Honored Patients" help put a face to the disease.
Some of you who are reading this will be getting an email from me in the next week or two asking for your support again this year. However, I would be honored if anyone reading this would like to support me in my efforts. If you are not able to donate, I certainly understand. I would ask that you provide prayer support, if you are so inclined. Together we might be able to help researchers find a cure! Research takes money and that is why I am doing this. There are many clinical trials taking place with new treatment options that weren't available to my dad just a few short years ago. Fortunately the type of leukemia I have is very slow and I hold out the faith and hope that a cure will be found in time that I and many of my cyber friends at acor.org and cllforum.com who are fighting this disease will benefit from that discovery.
My fundraising site is at: http://www.active.com/donate/ltnSanAn1/1949_jtw890
Cheryl's is at: http://www.active.com/donate/ltnSanAn1/1949_cwagnerLTN6
Cheri's is at: http://www.active.com/donate/ltnSanAn1/1949_cgrayLTN8
Cindy's isn't quite set up yet, but it will be soon and I will edit this post and post it then.
Just to let you know, I am feeling really well. I went to my primary care doctor this week for refills of my regular medications. He did a CBC, which he never had done before and my results were terrific! WBC 5.0, RBC 4.52, Hemoglobin 15.2, etc., etc. Everything but platelets were in the normal range and they weren't bad at all at 128. He always checks my cholesterol, blood sugar and liver enzymes. My cholesterol was the best ever - 133. Triglycerides were 79, a personal best. Three years ago they were hanging out in the 600 range, ouch! For the first time ever the good cholesterol, HDL, was in the normal range, 40. Miraculously, and I don't understand how it could be, but my A1C (3 month blood sugar test) was 5.2, well within the normal range of 4.0 - 6.0.
So, as I told the folks over at www.cllforum.com, I think I found the cure. A nice, relaxing cruise!!! Now, if we can just get funding for some clinical trials. Maybe I will contact the LLS. I think Hawaii just might bring my platelets up!
Wednesday, September 13, 2006
What a great trip! It is tough coming back and trying to get back into the old routine. Jimmy's cold never developed into much and Cheri, although still coughing, felt much better by the time we sailed. I never caught anything -- again! I didn't even think about my leukemia/lymphoma more than two or three times the entire cruise and even then it was very fleeting. Although I tried to keep the diabetes in mind during meals, I must confess I didn't check my blood sugar the entire week, even though I had the testing kit with me. It was so nice to take a vacation from thinking about diseases! I have mentioned how we who have this have to get used to our "new normal," but if I had my 'druthers' I would chose that as my new normal. However, like most vacations, we do have to come back to reality. On the other hand, the memories will remain forever. (Now, I did take pictures and lots of Super 8 movies so that even when my memory fails, I can relive the experience through pictures.)
We arrived in Galveston early in the afternoon on Monday. Because Cheri had gotten an upgrade to our staterooms, we were in "VIP status." Woo-hoo! We were able to by-pass the long line for check in and went right to a separate processing room where there was no line. We showed our documents, signed some forms, had our picture taken and were issued our "sign and sail" cards which served as a credit card for extras on board and also as an I.D. for getting on and off the ship in port. Our pictures were encrypted into the magnetic strip on the card and these were checked each time we got on or off. After going through security, like in an airport but not as strict, we found our staterooms. Very nice and we each had a balcony. Not many of the rooms on this ship had balconies. We set out to explore the ship. It seemed even larger inside than it did from looking at it from the dock. A few hours later our luggage was delivered to our rooms. We had turned it in at curbside when we arrived.
We had requested early dinner seating because of the kids. The formal dining room dinners were always terrific. Lots of great new choices each evening (some of which I couldn't pronounce and had no clue what they were) and fantastic service with a team of three servers assigned to a set of two or three tables (8 or less people per table). Even though the dessert menu, which changed every night with four or five new choices, was always so very tempting, I was a good boy for all but one night and always ordered the scoop of sugar free vanilla ice-cream...sigh. Even up at the buffets, I avoided the dessert table literally piled high with lots of choices. The one night, in addition to the choices on the menu, they actually brought out Baked Alaska to the table. When it was right in front of me, I couldn't resist. The kids soon discovered they didn't care for the "fancy" food choices and ended up eating at the informal buffet lines most of the time. At formal night dinner, Jimmy wanted to attend because he loves dressing up. However, he first got pizza from the pizza parlor on the upper deck and brought it to the dinner. Our head waiter always got a kick out of Jimmy. The very first night Jimmy asked him for "the American menu."
During the cruise, Holly attended "Camp Carnival" most of the time. This was designed for the kids and they had activities all day long, from 8 a.m. until 10 p.m. They did all kinds of stuff, took them to eat and even took them to the appropriate shows. Holly loved it. Jimmy went to a few of the activities, but there were very few kids in his age group. There were more in the 12 to 14 group, but he isn't quite 12. So he stayed with us most of the time. He still had a good time.
The family shows in the evening were always excellent and very professional with lots of scene changes and costume changes. Mostly musicals with some acrobatics, magic and comedy thrown into the mix. Even the night of the passenger talent show was fantastic. None of the passengers who sang were professionals, but you would not have known that when listening to them.
Our first port call was in Progresso, Mexico.
We took a trip to some Mayan ruins and stopped at the Pink Flamingo breeding grounds. The ruins were extremely interesting. Although we saw a lot of the Flamingos, apparently there are hundreds more during the breeding season. My still pictures didn't turn out very well of them, but the movies were better. We also did some shopping in Progresso.
The next day was a stop in Cozumel, Mexico. This was much more of a tourist port. However, hurricane Wilma last year destroyed almost all of the international docks. Wilma was a category 5 storm that battered Cozumel for three days! This was followed by another category 3 or 4 hurricane. Most everything was destroyed. However, because tourism is their lively hood, the people pulled together and had most everything built back within a few short months. The docks will take much longer. The HUGE blocks of concrete that are now at the bottom of the bay have to be broken up and hauled out before new docks can be built. There are still many palm trees that are on the bottom also that still have to be removed. Because of all this, our ship was anchored out in the bay and we took ferry boats back and forth to shore. Instead of docking down by the beaches where the international docks had been, we were ferried to a dock near the center of downtown and, of course, all the shopping. We discovered that a round trip taxi to the beaches would cost us $60 and, after shopping, we had only about an hour either before or after a tour we had scheduled. We didn't think $60 was worth such a short visit to the beach. Maybe next time?
The tour we scheduled was called the Sub-Ocean View. We thought it was going to be the submarine trip, but it was a ship that had glass windows in the bottom of the hull where we sat. That was fine. The actual submarine trip would have been $600 for all of us. OUCH! This was "only" $300, but was another trip of a lifetime. We spent close to two hours touring around the bay and enjoying the sites of the various fish (even saw a sting ray), and the corral reef. We even toured the destroyed international docks. To see these many, many, huge building-sized chunks of concrete with twisted rebar sticking out was so very sobering to realize the destructive power of a hurricane. Miraculously, only nine people total were killed on the island during (or after) the hurricane. Our guide said all of these could have been prevented if the people had not been foolish and had taken the advised precautions. Almost all of the evacuations off the island did not happen until AFTER the hurricanes had passed, so it really was a miracle more did not lose their lives.
All vacations must come to an end and we arrived back in Galveston Saturday morning. Debarking was just as smooth as when we arrived. Again, because of the staterooms we were in, we were among the first off the ship. Our luggage was picked up at our room the night before, so we only had a few carry-on pieces with us. We found our luggage just before going through customs, but a porter put it on a cart and went with us. We went through customs very quickly with no problem or delay. I went and got the car and came back and picked up everyone and our luggage and headed back to Austin.
As I said, it was a fantastic trip and one we won't forget. Cheryl said she enjoyed it very much also. I am grateful to Cheri and Marc for doing this for us.
Now, back to reality and the world of illness, and doctors. But, I can deal with that, too. We all just need a break now and then.
Monday, September 04, 2006
Unfortunately both Cheri, my daughter, and Jimmy, my 11 year-old grandson, are sick with deep chest and head congestion. We think it is just colds as there is no fever. Cheri got sick Thursday night and went to the doctor Friday morning. She got a precautionary shot and several other medicines. Jimmy woke up with it this morning. I hope they let us on the ship as they take that seriously as they don't want other passengers getting ill.
We are all traveling down to the port in our SUV and I just might make everyone wear surgical masks. That would be quite a sight! Pray that they get better quickly so they can enjoy the trip and pray that none of the rest of us catch this, whatever it is.
Monday, August 28, 2006
Then he sat down and said the bone marrow biopsy showed the marrow was still 50% involved with those little nasties. My heart sank as I knew if it was not below 30% it meant more chemo. However he really surprised me and said he didn't want to do more chemo now and after eight rounds, my body needed a rest. He asked me if I was OK with that. Well, as the kids say, "no, duh!" Of course I was OK with that. He said we will wait and test the blood in three months and take it from there. He did ask if I would follow his advice next time. He said that yes, the FCR was much harder, but he would expect much better results from it. Since my marrow didn't clear like I wanted and I still have the lymph nodes everywhere but my neck, I guess I will probably go along this time. He said we might get six months out of the treatment we just finished. So when I go back in November does not mean that is when we will do more chemo. It will all depend on the blood tests. I asked him about the Campath mop-up right now, suggested by the doctor at MD Anderson. He said he really didn't want to do that and I needed recovery time. Fine by me. He did say that if I was in my 70's, we would just keep repeating the chemo I just finished with. Knock it down for six months and then repeat. However, because I am still relatively young, we need to go stronger and get a longer response. Perhaps several years before having to repeat. Of course I have written about the downside of doing that, as has Dr. Hamblin on his blog. Even Dr. Hamblin is not totally opposed to FCR and he knows it does have its place.
So, I get a break for awhile. This will be the longest period between blood tests since my diagnosis. I am sure I will get anxious as the date approaches. I will get the next blood drawn on November 22 and see him again on November 27th. In the meantime, my inner chinese hamster is getting a break. However, I am putting her on a weight training program so when we do chemo again she is ready to really kick cancer's butt!!!!
My platelets made a big jump to 138! I am still somewhat anemic and, ironically, my iron levels are a little high. Everything else that was out of whack was only slightly above or below normal. What I really want now is to get my energy back. I am tired of feeling tired all the time.
Here is what it says in summary on the bone marrow biopsy report (it is five pages long):
Residual CLL/SLL involving 50% of marrow cellularity, nodular and interstitial pattern.
Normocellular (30-35%) trilineage bone marrow with mild mmegakaryocyte
Mildly increased iron stores
If anyone wants any of the technical details, just email me. I also posted many of the details on the CLL Forum.
So, to all you prayer warriors out there. Thank you so very much. This treatment intermission is truly and answer to prayer.
Friday, August 25, 2006
This is me with my grandson, Jonathan and my daughter, Cindy.
Another thing I have always wanted to do was go on a cruise. My wife, Cheryl, has never been that keen on the idea. She is afraid of the things that may be lurking under the water. Not sharks, but anything that might resemble a snake. It is a phobia she has. However, since my diagnosis, she has been more open to the idea. (See what love does?)
Well, beginning Labor Day, we are going on a cruise! A gift from Cheri and her husband, Marc. Cheri, Marc, and grandkids Jimmy and Holly are all going with us. Our ship will leave out of Galveston a week from this Monday, and return on Saturday. Cheri was even able to get upgraded rooms so we all have balconies. Cheri and Marc were going to do this for us at Christmas, but the scheduled chemo messed up their plans. Cheri figured now was a good time to do it. I am really looking forward to this. Now, even Cheryl is looking forward to it too. She has bought some new clothes and even a swimsuit! It should be quite relaxing and very enjoyable. There are even activities all day long to keep the kids entertained. Of course I will post details when we return.
The suspense was killing me waiting for Monday's appointment, so I called over to see if the bone marrow biopsy results were in so I could be better prepared for Monday's visit with the doctor. They were not back, but the CT Scan results were in. The nurse faxed them to me and I was quite disappointed. Although overall some better since three months ago, the size of most lymph nodes had not changed, or only decreased a little. I still have them in my lungs, stomach and groin. A few had disappeared, so that is good. I was really hoping that after the additional two rounds of chemo that were added on, I would see better results. As you know, the ones in and around my neck that were bothering me, went away after only two rounds of chemo. So why didn't eight rounds get rid of the rest? I am just a little nervous that this does not bode well for the bone marrow biopsy results.
There is no sense worrying about it though, because WE ARE GOING ON A CRUISE! (As long as the hurricanes stay out of the Gulf of Mexico!)
Keep up those prayers folks, I do appreciate them very, very much.
Monday, August 21, 2006
The BMB went very, very well. It was CT assisted with conscious sedation. The CT scan apparently helps pinpoint where the best place to drill will be. (Soon I will be glowing in the dark from all the radiation!) I told them if they struck oil in the drilling, I wanted to collect on the residuals, but if all they got was natural gas, I would apologize in advance.
I was mostly awake, but felt no pain! I still feel no discomfort at all and I think all the anesthesia has worn off. Same as my first one done there over a year ago, and much better than the one at MD Anderson a year ago. That one really hurt and I wrote in detail about it earlier in this blog.
Before I started chemo, my bone marrow was 90% infiltrated, so, after seven months of chemo I better see a good reduction or I will have to have a stern talk with my inner mouse/hamster. Wouldn't it be great to get a report that says at the present time it is undetectable in the marrow? Well, I have to wait a week to find out. Next Monday afternoon is an important appointment with my oncologist/hematologist!
Thursday, August 10, 2006
Last week I was in El Paso, TX from Monday through Friday conducting a training. In case you didn't see it on the news, El Paso had severe flooding all week. And this in a desert area that only receives about 6 to 8 inches of rain an entire year if they are lucky. I arrived Monday afternoon to rain and temperatures in the 70s (most of the country was baking with temps over 100!). It had already been raining most every day for 5 days. Tuesday morning while in class it really began to pour. We went down stairs on break and watched as water poured down the street. About 30 minutes after resuming class, someone came in and told us if anyone had cars on the street we better move them now as a car had already floated down the street and was a block and a half away. I had parked in the garage but my co-trainer, Amanda's car was on the street as were some of the cars of participants. Water was already up to the door of her car and a participant's car in front of her's had water part way up the door. Amanda started to cross the street to get to her car, but the water was up to her knees and she had a skirt on. So, one of the male participants rolled up his pants and ventured out into the water. Amanda's car only had water on the floorboards, the car in front of her had lots of water. They backed them up into a reserved parking lot and when the other fellow opened the doors water just poured out. Looking down the street we could see cars under water and people wading in water up to their waist and above. I have only seen that on TV before! We went back to class. Lunch time it was still raining, but not as hard. Folks were able to go out the other side of the building onto another street that was steeper. Although water was running in the street, it was not over the sidewalk, so they could walk up the hill to a restaurant a block away. By one o'clock the rain stopped for awhile. At two o'clock it was announced the agency we were at was shutting down because the flood waters were receding, but another large rain cell was on the way. The interstate was closed in both directions. My hotel was over by the airport on the east side of the city and the heaviest rain had been on the west side. The normal drive time was 10 minutes. Since the interstate was closed, all the cross streets that you could get down were jammed with cars. It took more than an hour and a half to get to the hotel. The street was full of debris and landscaping rocks that had washed from businesses and homes. And this was on the "good" side of town that hadn't received as much rain. Radio reports said one area on the west side had gotten 13 inches! It was supposed to rain the next day, but it was sunny and allowed things to begin to drain and dry out. However that night more large storms came in and more flooding. When I first woke they said the interstate was closed again. However by the time I had to leave all but one west bound lane had opened. Because of concern of an imminent dam break on the Mexican side of the border, the night before a large area of downtown was evacuated and I didn't know if our training site was included. It turned out that the evacuation area stopped a couple of blocks away from where we were training.
Thursday was my birthday. My co-trainer had the room decorated with a sign and horns and party stuff on the tables. Later that day they brought in a decorated cake with candles. That was so nice of her! Cheryl was upset I was gone because it was the first time in 42 years we had been apart for my birthday. Birthdays are not as important for guys, I don't think. We celebrated as a family on Sunday after I got home.
The rest of Thursday was uneventful, other than light rain. Friday afternoon, just before the training ended, very heavy rains moved in. However this time it was on the east side, the airport side. When I left the training site, the interstate was again shut down and reports on the radio said heavy flooding was occurring near the airport. Initial reports said a dam on the military base by the airport had broken. Later it was learned that it had just overflowed and was causing flooding. Cars were under water at a restaurant next to the hotel I had stayed at and less than half a mile from the airport. After two hours of trying to get over there and making little progress on an increasingly flooded street, I pulled off into a shopping mall to wait it out. Fortunately my flight wasn't until 9 p.m. The rain stopped and I was able to get to the airport about 7:30. I was glad to be leaving!
The hotel also lost Internet connection on and off, mostly off, during the week and I felt lost and "disconnected." I am very sorry for the residents of El Paso and the people on the Mexican side of the border. Thousands of people in El Paso were displaced and hundreds of homes were destroyed beyond repair. The TV at the airport showed cars and trucks buried under tons of mud and homes filled with mud. Most of the hardest hit homes were in poorer sections, although some affluent areas were also hit hard. Of course, who carries flood insurance in the desert? So most were uninsured. Here are a couple of private citizen's pictures I pulled from the net:
The water had rushed through the back wall of this new Blockbuster video store and broke it down, it then collapsed the side walls. The news said thousands of videos were scattered around the neighborhood for several blocks!
I saw much worse video of much higher water on the news reports, but those pictures can give you some idea. Really unheard of for El Paso.
I also want to mention that my birthday, August 3rd, is shared by Earl Dunn - of course he is MUCH older than I am. Many different years we celebrated in person together. We always exchange cards, but this year, for the second time, I didn't get one out to him. I could use the excuse I use for everything now, "chemo-brain," but I can't because I did think of it in advance, I just put it off too long. Sorry, Earl. So, here, for all the world to see, I want to send you happy belated birthday wishes and wish you a happy birthday for next year in advance in case the same thing happens :)
Also, David Emerson, whom I have written about here and who has his own blog documenting his battle with prostate cancer, celebrated his 15th wedding anniversary with his wonderful wife, Mary on August 3rd. I watched a video clip of him doing an interview on his local TV station. He was terrific. I would give the link here, but it expires tomorrow morning.
So, to continue my personal soap opera, I got back home from El Paso very tired about 12:30 a.m. Saturday morning. When I went to get the mail the next day, I noticed "dirt" on the floor by our coat closet. I asked Cheryl about it and she didn't know what I was talking about (not too unusual an occurrence, lately). I opened the closet door and was greeted with a large pile of attic insulation and a very soggy ceiling that was now on the floor and laying on the closet shelf on top of Christmas wrapping paper and ribbon. Oh, and the coats were dripping wet, too. Our air conditioner unit is in the attic (yes, they do that here in this part of Texas) and it had sprung a leak. There were water spots in the ceiling in the living room by the closet and around on the other side in the laundry room and water streaks down the walls too. We spent time cleaning up the mess and the carpet was all stained from stuff on the floor. After moving the piano in the living room, we saw stains there too on the carpet. The A/C repair man spent three hours in the hot attic fixing the leaks. The estimators for the insurance company came yesterday. All the carpet in the closet and living room/dining room will be replaced. Of course the closet will be totally redone. Because we have an open floor plan, the entire ceiling will be repainted -- living room, dining room, kitchen, family room and hallways up to the bedrooms and bathrooms. The entire laundry room will be repainted, too. So much fun!
I had my dermatology appointment on Monday and two probable skin cancers were removed. One on the top of my head and one on my chest. Another area on the top of my forehead was frozen off as she said that was a pre-cancerous area. I now look like Mr. Gorbachev with the spot on my head. The lab reports on the spots she cut off will be back in two weeks.
After that, I headed over to the oncology lab for my latest blood work. It looked some better in most areas. Red cell count dropped some, neutrophils (infection fighters) were down some, platelets came up to 96 -- I had hoped they would be higher, and white count was just barely below normal range. Overall pretty good. The nurse told me verbally that my protein level had dropped more and it had been low for some time. I asked her what I should do about it and she said eat more meat and dairy. Hmm, I have one to two meals a day with meat and have milk on my cereal every morning. I don't need to gain anymore weight. But I cooked T-bone steaks Monday night and ate a whole one. Hey, have to follow medical advice!
I was supposed to have the oncology appointment yesterday. Shortly before I had to leave (Cheryl already left her work), the nurse called me and said Dr. Netaji was canceling the appointment. He wants me to have the bone marrow biopsy and a PET scan before he sees me. So they are being set up for next week. I reminded her that I wanted to be under sedation for the biopsy and she said that is the only way they do them. YEA! If you remember, I have had it done both ways. The sedation was great. The one done at MD Anderson with a local was horrible because they couldn't get the local to work after several tries. Finally they just did it. I am teaching in class all next week, but I will be here in town in my own office building. Because it is a large class, there are two other instructors with me so I will be able to get away for these tests.
Yesterday, after the adjuster left, I went over to the Leukemia/Lymphoma Society's office. I am signed up again for this year's Light the Night fundraiser (many of you will be hearing from me later on this). Last year, thanks to generous friends and family, I raised over $2,000! The walk is late October. They also talked me into being an "honored patient" for the walk. At first I said no because the other term used is "honored hero." I certainly wouldn't begin to call myself a hero just because I have cancer and have undergone chemo. That term doesn't fit for me. Heroes are the firemen and policemen who rushed into the World Trade Center, they are the men and women serving in Afghanistan and Iraq, they are the men and women who risk their lives everyday serving and rescuing others. I will accept the term patient, but not hero. Fortunately the paperwork giving them permission does say "honored patient" so that made it easier to say yes. They wanted three patients of a wide age span (guess which end of the span I am on!) to put a face to the disease for the corporate teams that might be walking and raising funds without knowing someone personally who is fighting a blood cancer.
I think that about catches up on everything, whew! I have been really tired all week and have been falling asleep early in my chair. Sometimes I wake up and come out to the computer for a bit and sometimes I just head into bed. I am pretty much caught up reading emails and posts over on the CLL Forum and the ACOR list. Funny how you can get so far behind so fast.
I don't know how some of my fellow bloggers do it by posting most every day. I keep telling myself that this is the day to update and then something always happens and it gets too late. I admire the folks that are able to do it. If I did, my individual posts wouldn't be so long! Well, it is now 1:15 a.m., and even though I have already slept several hours tonight, I need to get to bed. I will pay for this tomorrow.
As always, but I never want to forget, thank you all for your concern and most importantly, your prayers!
Sunday, July 23, 2006
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!
Tuesday, July 18, 2006
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
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
Tuesday, July 11, 2006
Monday, July 10, 2006
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
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.
Thursday, June 29, 2006
However, the very, very saddest thing occurred this week. A wonderful member of our forum experienced a real tragedy. Her beautiful little 8-year-old niece, Hanna, died from cancer. This little girl put up a three year battle having suffered through many, many rounds of chemo, radiation and two bone marrow transplants. Late last year she was sent home from St. Jude's Children's hospital when there was nothing more they could do. Hanna had a very special relationship with her aunt. Closer than I have ever witnessed and aunt and niece to have. Hanna said they were "cancer sisters."
Last Saturday, after a dream or a vision, she told her family:
"I just can't wait to get to Heaven and ride my big white horse." She said she named her white horse Salvation. Good name, I think!
I am copying what her aunt Debra (but Hanna had always called her Aunt Bebbie) posted to our leukemia forum the other evening. Debra is the lady with leukemia. I am posting two pictures, also. Hanna apparently had been a thin, pretty girl, but the steroids just puffed up her body. I think she still looks beautiful in the pictures. The first is from this May when Hanna received an Awanna's award at her church. The second was taken this Saturday. Debra said that even the dog knew what was happening and was not her hyper self and just stayed there quietly for hours in the crook of Hanna's leg. Debra wrote often of Hanna and posted many pictures. We really came to know this little girl through her aunt. She was quite special.
Her is what Deb wrote last Monday:
Our precious Hannah went to be with the Lord this morning at 9:25. I got to go be with her right after she died. She looked so peaceful and like an angel laying there. I can just see her running into God's loving arms. I already miss her terribly and can't imagine life without her. She has taught me so much in her 8 short years here on earth and has touched so many people's lives here on earth. She has brought me more joy than words can ever say. We had a bond that even I can't describe. She was left a little money 2 years ago when my brother died and she gave $1000.00 dollars to help start a church in a small village in Haiti. She also sent them clothes, toys, jewelry, etc. She had the most giving heart of anyone I have ever seen. Her main wish was for everyone she knew and loved to be saved so she could see them in heaven. I am heart broken but also so glad she is free from pain and now I have the BEST guardian angel. God Bless you all for your prayers and kindness to us during this time.
Hanna told her dad last week, "Daddy as soon as I get to Heaven I am gonna shout GLORY and sing Jesus a song."
Hanna's service was this evening and Aunt "Bebbie" just posted this on our forum:
The service tonight was such a celebration of Hannah's life.Hundreds came and her Drs. and nurses were there and the most beautiful flowers everywhere. She looked like an angel and made such a difference in my life and so many others. I will miss her greatly.
God saw you were getting tired
And a cure was not to be.
So he put His arms around you
And whispered "Come to me"
With tearful eyes
We watched you suffer,
And saw you fade away,
And although we love you dearly
We could not make you stay.
A golden heart stopped beating,
Hard working hands now rest.
God broke our hearts
To prove to us
He only takes the BEST!
Please pray for this family as they deal with the loss of Hanna. She touched many lives including those of us who are members of the CLL Forum who only knew her through the many postings of her beloved Aunt "Bebbie."
Here are yesterday's results. Most everything that is off, is only just a little off. So even though there is a lot of red, it really still is a good report. The only thing I was really disappointed with was the platelet count. They had been all the way up to 122 the morning of my last chemo. Even so, 81 isn't in a real danger area. The numbers in parenthesis is this lab's normal
WBC 3.7 (4.0 - 11.0)
NEU# 1.4 (3.0 - 7.0)
NEU% 37.9 (40.0 - 74.0%)
LYM# 1.6 (1.0 - 4.0)
LYM% 43.30 (19.00 - 48.00%)
MONO# 0.5 (0.1 - 0.6)
MONO% 14.9 (3.0 - 11.0%)
EOS# 0.1 (0.1 - 0.6)
EOS% 1.6 (0.0 - 7.0%)
BASO# 0.1 (0.0 - 0.1)
BASO% 2.3 (0.0 - 2.0)
RBC 4.46 (4.70 - 6.10)
HGB 15.20 (13.00 - 17.00)
HCT 42.40 (37.00 - 49.00%)
MCV 95.2 (80.0 - 100.0)
MCH 34.1 (27.0 - 34.0)
MCHC 35.8 (32.0 - 36.0)
RDW 11.8 (11.0 - 15.0%)
PLTS 81.0 (130 - 400)
Monday, June 19, 2006
First of all I had a great Father's Day and I hope every dad and grand dad reading this, did too.
We all went to church where we heard a terrific message on the importance of father's in the home and the blessings a father receives from his family. Then later we all went out for a steak dinner. Eight of us. The grandkids were well behaved -- AND I didn't have to pay for the meal! My one grandson, Jimmy (oops, "James" now) picked out a blue shirt for me to match his "church-shirt" so that we could wear them together when we go to Ohio at the end of the month. And he picked the tie to match. Actually among the gifts was another tie that I also LIKED very much. I received a total of three shirts, two nice ties, sunglasses, a paid-for steak dinner, a couple of great cards and the best company in the world -- my wife, my two daughters, three grandkids and one son-in-law. (Cindy's husband was out working in the oil fields. He guides the drillers by computer.) So the day included the two most important things in my life - God and family! Can't get much better than that.
This has been chemo week and my buddy, DavidE called the other night to see how I was. He and his wife had been waiting for a posting. I know I should post quicker as I have so many folks concerned over me, but after seven rounds now, there isn't much to say. Still tolerating it well. I did have even more severe "restless leg/foot" stuff going on during the infusions, but I did get a great foot massage out of the experience from Cheryl. She rubbed and rubbed until it finally started calming down. This has been pretty normal chemo week with NO nausea (praise God!) and trouble sleeping but being tired. Moodiness isn't quite as bad, I don't think, but you would have to ask Cheryl to be sure. I know when I read something sad or sentimental on my CLL Forum, I tear up really easy.
However, Friday night to Saturday I did get 12 hours sleep! And that was without overdosing on any medications. I guess my body said enough is enough. That 12 hours was about as much as I had total the days previous. Also, this time, my diabetes is a little more out of control. Several times the glucose level has been over 350 two hours after eating even with an insulin shot before eating (should be below 120). Sure hope I don't end up permanently using insulin when this is over.
A very good piece of news was that my blood work on Monday before starting the chemo was the very best it has been. Only platelets were low but they were very OK at 122 (normal 140 - 440). Here are the terrific numbers with normal range in parenthesis:
WBC 6.1 (4.1 - 10.0) YEA!
LYM 2.4 (0.6 - 4.1) DOUBLE YEA!
GRAN 3.3 (2.0 - 7.8) These are sometimes reported as neutrophils. TRIPLE YEA!
RBC 4.42 (4.20 - 6.30) Quadruple -- ok, you get the idea!
HGB 14.5 (12.0 - 18.0)
HCT 42.7% (37.0 - 51.0%)
PLT 122 (140 - 440) still a little yea :)
Next blood work is the 28th, just before heading out for a long weekend in Ohio, then the next chemo is July 5th followed by an appointment at MD Anderson in Houston on July 12th.
If I could get my energy back, I would feel terrific. I told Cheryl on the way to church this morning that I didn't know why I was feeling so drugged. Oh wait, I am so drugged. Everyone says I look terrific (they must like seeing me fat again). Wished I felt as terrific as I look. I think I soon will!
I have been thinking about my next posting all week and trying to phrase it in my mind to do it justice. I want to comment on a man who makes a difference in the lives of all people with CLL. It needs to be good.
Wow, need to get to bed. I am attending a conference here in Austin all week and I don't have to be there until 9 a.m. so I get a little bit of a sleep in. Even though that is two hours later than I usually go in to work, it will be the height of rush hour so I will really only save about an hour.
Have a great week, everyone. And, once again, thank you so very much for your concern, prayers and support. It means a great deal to Cheryl and me. Please say a prayer for my many friends who are suffering/fighting with this same disease. A few of them are having great difficulty right now and it is rough on them and their loved ones.
Wednesday, June 07, 2006
Monday, before I left to fly up here, I saw my Dr. again and had more blood work. I won't post that here other than my platelets came up some and my RBC went down some. Other than that, nothing much changed. However, after seeing him I now have two more chemo rounds scheduled. Since I am in El Paso all week, the next round will be next Monday. Then again on July 5th. I will also extend the Prednisone for an extra five days so I can decrease it slowly rather than the sudden stop.
How did I happen to agree to this? Well, as you know, he wants a better response but I have been happy with the good partial response. However, a couple of weeks ago he had ordered another CT scan of my chest, abdomen and groin. He left out the neck this time. At first I hesitated to do this because of the high dose of radiation that it takes to do this test -- equivalent to 400 chest X-rays! But, since my neck lymph nodes went down after the first chemo round, I thought this would show him I had a better response than what he thought. Well, I was wrong, sigh. Although all the nodes had decreased since before we started chemo, they only went down to half or some to 1/3 of the original size. There are several that are close to 2 cm x 3 cm. And I still have quite a few in the lungs. So, because of the fact that he said he was more pleased than he had been, that he didn't suggest FCR (the one I don't want to do yet), and the nodes that haven't gone away, I agreed to do two more rounds of what I have already had six rounds. He said he wants a more complete response. He will then do a bone marrow biopsy in August.
Well, the fact that we are doing more chemo made Cheryl happy because she really wants me in a remission. As my daughter, Cheri, said, "when Mom is happy, everybody is happy." I was absolutely fine with the decision in his office and on the drive back to work. But then some disappointment set in. It was nice not having to do chemo for awhile. At least I know I tolerate this well, so two more rounds won't be bad. I just know I will have a couple of more times with my steroid friends. More sleepless nights, more fatigue and more moodiness. Watch out!
Also, in Monday's mail I got a letter from Dr. Weirda's office at MD Anderson. He is the CLL expert I saw last year for my second opinion. They automatically made a follow up appointment for July 12th. I will have blood work there in the morning and then see him in the afternoon. That is good timing because I will get his opinion on what I should be doing now after these two extra rounds. However, I will still be on the Prednisone and that will throw the blood work off some. It will make some numbers look better and some worse.
I noticed on the CT Scan report when I was reading it here in the hotel, that as noted last time, I have coronary artery calcification. My oncologist never mentioned this and I don't know how significant this is. I will need to ask when I get back.
I will also be making an appointment with a dermatologist. Skin cancer is a danger with this leukemia, particularly after chemo. Although not as much danger as with FCR. I have a spot on my arm that has appeared in the last couple of weeks. When I asked him about it, he kind of pooh-poohed it before he looked at it. When he was examining me, he did look at it and said a dermatologist could cut it out. Since my dad had lots of skin cancers with this leukemia, I will definitely go.
My energy level has been on a roller coaster ride. Last Friday I felt great all day, including after driving to Ft. Hood after work to get Rx refills, a haircut and some grocery shopping. I thought, FINALLY. Then I slept a lot all weekend. Yesterday it was pretty good again and then today a little on the down side. Oh well, it should be pretty good just in time to start over on Monday. I came back to the hotel tonight and slept for three hours. Just went and ate and about to go back to bed for the night. I never sleep that well the first couple of nights in a hotel.
Pray that these next two rounds will give me a more complete response and I can knock those nasty cancer cells running all around my body into submission.
Tuesday, May 30, 2006
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
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
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...