Sorry for the long silence again. So what has been happening? Last time I posted I had that pesky itching rash. It eventually cleared up, although it kept trying to come back, but the prescription cream worked really well. It has been several weeks now since it tried to reappear.
Since I last posted, several important dates passed. One was the first anniversary of this blog. When I started it, I posted every day and it was quite therapeutic. What's happening now? Not sure, but that is the subject of my next post which I have been formulating in my mind. December 23rd was Cheryl and my 39th wedding anniversary. For the first time in many years, we actually went out to a real restaurant that evening. Previous recent years have included, cereal at home, KFC take out, hamburger, nothing, and Luby's cafeteria. We really know how to celebrate! Actually, Cheryl is usually so frazzled trying to get ready for Christmas that she is too tired to go anywhere. This year, although we didn't even start shopping until that week (totally unheard of as the shopping usually starts in January and lasts all year), the afternoon of the 23rd we were totally ready and all gifts were wrapped. That has never happened before. It wasn't until that morning we were even sure if we were having our traditional Christmas Eve dinner with the family here as both girls' plans were up in the air. As it turned out, we even were having extra guests -- Cheri's in-laws. So I went to the store, bought a huge turkey and fixings for 13 people. Christmas Eve and Christmas day was a wonderful time of family and celebrating the birth of our Lord. Of course New Year's was the usual -- I watched on TV the ball in Times Square drop and Cheryl went to bed early. She even slept through all the fireworks in the neighborhood.
In December, our work put on our HIV conference in Austin. We had speakers from around the world and about 900 participants, I think. I was in charge of the AIDS memorial display of quilt panels. I ordered 22 of the 12'x12' panels and had them displayed in a giant circle in an empty ballroom. Each 12'x12' section has six 3'x6' individual panels made by loved ones of those who have died as a result of AIDS. Each one is totally unique and often very touching. We had panels from celebrities, men, women, boys, girls and infants. Very sobering. In the center of the room I had an oval table with two large round red bowls with floating candles and a large white pillar candle in the middle on a tall candle holder. A red ribbon was on the white pillar candle. In the center of the room were two couches and two easy chairs. It really was quite moving and a very nice memorial.
I was really late putting up the Christmas lights this year. They were only up for two weeks and I didn't have them all out either. I am the Clark Griswold of the neighborhood with all my lights and they normally go up on Thanksgiving weekend. This year was a little more "normal." They still looked nice.
So, what has been happening health wise? Glad you asked. My blood tests in the beginning of this month looked very good; my platelets even came back over 100 again, to 105. So I had another pass on chemo. However, since my lymph nodes are swelling again, including in my neck, my hematologist/oncologist ordered another CT Scan -- sigh. I'll be glowing in the dark before long. I won't know the results of that until I see him again on February 8th. Right after I saw him, I had an attack of what I assume was shingles without the actual skin outbreak -- yes that can happen. It was on my left arm and I couldn't wear my watch and even clothes hurt it. It was from my wrist to nearly my elbow on the underside. It would wake me up in the night hurting so badly. It also felt like electric shocks going through it quite often. Shingles are inflammation of the nerves. I was teaching a week long class that week here in Austin. Then, as that was clearing up I started catching a cold. At the same time we had a really bad ice storm that shut everything down for three days. I didn't go to the doctor because I was sure it was just a cold. I stayed home from work but still didn't go to the doctor as Cheryl was urging. Of course, by the time the weekend came, I was a lot worse. So, Monday morning I finally went to the doctor as Cheryl kept saying. Should have listened to her -- I hate it when she's right, ha! I had pneumonia in my right lung and bronchitis in my left. The doc prescribed a brand new broad spectrum antibiotic that is only once a day for seven days. By the second day on the meds, my fever went away and I have been feeling better, thank you Lord. I really was feeling pretty rotten for awhile. My cough is getting better every day. I went to church today and I will be going to work tomorrow. I haven't been in the office for three weeks now. Funny thing is, I have no desire to go in, either, and I do like my job. Oh well.
And that brings me to another decision that I haven't posted here yet. I am planning on retiring this coming September. I will be 62 in August and eligible for social security reduced rate. I had planned on working until 66 and collecting full social security at that time. However, since this pesky disease raised it's ugly head, I decided to retire now while I can enjoy it. I like teaching and training, but when I come home from being gone a week, I am just way too wiped out. Standing all that time also hurts my back, too. (Oh yea, I had another bone density scan and the osteoporosis is quite a bit worse too -- "severe danger" of spinal fracture and "increased danger" of hip fracture. So besides the Fosamax, I am also on calcium supplements. That brings me up to 14 pills a day, and I'm not even on chemo! -- whine, whine, whine, whine)
So, what will I be doing in retirement? If possible, I would like to work part time for a local HIV/AIDS project and do counseling and testing a couple of days a week -- what I am training folks to do now. Also, Cindy's young lady that watches my grandson Jonathan and feeds their dogs when Cindy is traveling will be going away to college. So, I will take over those duties. Also, when she and Corbin get their RV and boat storage business off the ground, I may take care of that for them initially until it starts to make enough money that Cindy can quit her job. I also want to do some fishing. I have taken the grandsons a couple of times this year, but I really would like to be able to do it more often. Cheryl is also looking forward to me being a full time househusband and taking care of the house. We share those duties now, so it won't be much of a transition. I don't think I will be getting bored at all. We worked out the finances and are pretty sure we can do it. Just to be sure, starting in February we are planning to live only on what we think I will be getting in September. We think it will "only" be a $12,000 dollar a year drop. Now when Cheryl retires in a couple of years, that is when the miracles will have to happen. We shall see.
Cindy had her surgery, and although the recovery was a little slow for her, she is fine now. Cheri is still dealing with some things. She did have another ultasound a couple of weeks ago and although the possible tumor didn't shrink, it didn't grow either. She is still having a great deal of difficulty sleeping as a result of some medications to the point she even went to a sleep clinic last week to spend the night. Although she was hooked up to all kinds of wires, she said she slept five hours, the best night's sleep she had in a long time. She asked if she could come back the next night -- ha!
Well off to bed as I need to look awake tomorrow at work.
Sunday, January 28, 2007
Tuesday, November 28, 2006
Yikes, Another Month Gone?
Hmm, I said I was going to do better about updating this blog. Well at least it hasn't been six weeks! So, what is my excuse this time? I really don't know. I have actually tried to analyze that myself. Perhaps I was just enjoying the break from treatment and lab work and doctor visits and such. Of course I was traveling also as I spent one of the past weeks in McAllen, Texas, teaching a class -- which went very well, by the way.
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!
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
Team Wagner
First, I can't hardly believe that it has been over 6 weeks since I posted. More on that later. Tonight was the Light The Night Walk at the Dell Diamond and it was a huge success! Of course final figures aren't in, but it was announced that it was almost certain they raised over a quarter of a million dollars for the local chapter on this walk. Team Wagner did their part too. Between my wife, my daughters and me, we raised $2,558 thanks to the tremendous generosity of my wonderful family, friends, internet friends, and our fantastic co-workers. (FLASH: UPDATE, we received even more money this morning from some fantastic folks at church. Our new total is $3,118!!!!) I had quite a group walking with me tonight -- Cheryl, Cindy and Jonathan, Cheri and Marc, Jimmy and Holly, and friends of Cindy's (the folks who bought her house) and their kids. Cindy's friend is taking this picture, but her husband, Tom and their two kids are on the right.
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
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
There Is No Leukemia on a Cruise Ship
Sorry I am a little slow (as usual) posting, but sure seems like there was a lot to catch up on after only being gone a week. We didn't have Internet access all week -- at least I was too cheap to pay the $24 per hour to access the Internet.
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.
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
We Leave On The Cruise Tomorrow - We Hope
We are excited. We leave in the morning to drive to Galveston to catch the ship which departs at 4 p.m. All packed and I am about ready to go to bed.
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.
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
Back to Watch & Wait!!!!!!!
Today was the day I saw my oncologist/hematologist. I had tried to get a copy of my bone marrow biopsy before the appointment and it wasn't available. So, I was quit anxious going in. He asked me if I was still working or if I was going back to work. Remember, he had wanted me to take off six months for chemo treatment. I told him he knew I was working and I was the one with chemo brain, what was his excuse? He said it was from working all day long with people who had chemo brain. Seems it must be catching. A funny start.
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.
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
My Two Daughters (and a quick update)
I am a very lucky dad. I have two grown daughters who are terrific. Cindy, my youngest, worries about me perhaps too much, but it is only because she does love me. I know my oldest daughter, Cheri, worries too, but she is much less vocal about her concerns, though not silent by any means. That has always been a difference in their personalities. Last year Cindy took us on a trip to the Grand Canyon, via Las Vegas. I wrote about this earlier in the blog, but it was a fantastic trip. Something I had wanted to do and see for a long time. I don't gamble, but even walking all around Vegas was very interesting, seeing the theme of the various hotels. However, the highlight was obviously the canyon itself. No pictures can compare to seeing it in real life. 
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.
UPDATE:
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.
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.
UPDATE:
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
A One Week Waiting Game
Last week I was supposed to have a PET Scan, but the insurance wouldn't pay, so I ended up with another CAT scan (hey a cat is a pet, right?). This morning I had my third bone marrow biopsy (BMB) since diagnosis. This is the important test for right now. If the marrow is less than 30% infiltrated with those little cancer nasties, I will enjoy some period of going back to watch and wait. If it is more than 30%, on the advice of Dr. Wierda at MD Anderson and my local doctor, I will have to do some type of further treatment to push this further into "intermission." (Some don't like the term remission. Cheryl loves it, I think it is great too, but many don't understand it. This cancer will come back at some point in the future, so I will use "intermission.")
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!
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
Busy Times
Some very good friends of mine, Paula and Earl Dunn (he was my pastor for many years in San Angelo, TX), wrote to me and asked me if I was OK. They said I had been "strangely silent" since my last post on the spammers. Well, I am doing fine, but have been quite busy with all kinds of stuff happening. I will try to give you some highlights without going on too long, not my strongest point.
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:
MUD:
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!
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:
MUD:
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!
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