Tuesday, November 25, 2008

I'm a Gadget Guy

One of the things I like to do is surf the electronic store web sites and dream of things that would be neat to have. (OK, OK, so I lust in my heart for them – and I know that statement got Jimmy Carter in trouble. See Playboy interview 1976.)

If you are out there and are wondering what to get me for Christmas, here is my wish list (my wife and kids sometimes read my blog):

1. GPS
I need this driving aid and I really wish I had it when I was still working and traveling all around the state. I need a GPS. Yes, I said NEED. Several reasons:
* I am old and old people get lost.
* I am a guy and guys don’t ask for directions.
* Cheryl gets mad when I pull up to someone on her side of the car and I tell her to ask for directions.
* I have chemo brain and, and, and…darn, I forget why else.

After much research and reading lots of reviews, I have narrowed it down to a Garmin Nuvi, but I still haven’t decided on the model number. I know I want, er, need wide screen, touch screen, spoken directions and spoken street names. But, do I want/need a model that also has traffic updates? Bluetooth wireless for hands-free phone calling? FM transmitter? Garmin Locate™ (marks position when removed from windshield mount so you can take it with you and then find your car in a mall parking lot? Auto-sort multiple destinations for most efficient route? MSN Direct for theater times, etc.? Voice commands? Garmin’s “Where AM I?” which finds the closest hospitals, police & gas stations? (I guess that is so you can gas up before heading to the hospital with a police escort.) MP3 player? Audio book player? Picture viewer? Some of these features might be nice to have, but why do I need to look at pictures while I am driving? Isn’t that kind of dangerous? Strangely, almost all of their models have this feature.

Actually, I just need to get from point A to point B without getting lost. It reminds me of my phone. It does all kinds of stuff, but I only use it to make phone calls. That is why it is called a PHONE! I disabled texting and the Internet. Why surf the internet on a one inch screen? I couldn't see it anyway. Of course this goes against my normal preferences because I usually like all the bells and whistles on my gadgets. But I also don’t like paying extra on an ongoing monthly basis for all those features.

The last two times we were in New York, we used my brother-in-law, Bill’s automobile and he had a Garmin Nuvi and we fell in love with it. We named the GPS “Thelma” because of the sultry female voice that guided us on our journeys. Now one time Thelma done did us wrong! We were coming back late at night on a trip of about 60 miles or so and I was blindly following Thelma’s directions. Whenever she said turn right or left, I did. We were on a semi-familiar road and Thelma said, “Turn left,” I did. Cheryl said she was pretty sure we should keep going straight, but I trusted Thelma. Well, the road quickly became narrow. After a couple more turns, there was snow. A rabbit ran across in front of us. Then a fox. Then a herd of deer. Cheryl thought she saw an armadillo but I knew that couldn’t be. I think it was an opossum. Or maybe a longhorn. I don’t know. I think I was hallucinating by then. Then the pavement disappeared and we were on rutted dirt, then we passed through a farmer’s yard, between his house and the barn. I thought we had been transported to rural Germany. Unfortunately the car was warning us we were very low on fuel. We had no cell phone service. I started talking and pleading with Thelma. Before we completely ran out of roadway (and gas), we came back on to the highway we had originally been on. When we first turned, Cheryl saw the name of the road we turned on to. Texas Valley Road. Thelma must have felt we were a little homesick in New York and needed a taste of Texas. I had to explain to Thelma that we live in a very metropolitan area of Texas and to stop doing us favors.

2. LCD HDTV


I want a 40 or 42 inch thin bezel LCD High Definition TV, preferably the new Sony W or Z series with the 120 Hz refresh rate, but the Samsung model is good too. I would go for larger, but our built in bookshelf with entertainment center will only accommodate a set’s frame that is 40 inches wide at the most. Now I could put a 60 inch TV over the fireplace, but it wouldn’t look good with the huge Christmas wreath hanging in front of the screen every year. I first thought I wanted a Plasma set, but the TV room has lots of windows and a Plasma TV has a very reflective screen. Since I watch TV during the day, I need a non-reflective TV screen. If you find a good deal on Plasma, I wouldn’t send it back.

3. Desktop Computer


I could use a new computer as I still haven’t replaced my desk top that is basically dead. Since I am lusting for…uh, dreaming of the HDTV, I might as well go with the multimedia desktop with a powerful quad-core processor, one terabyte hard drive, 6 to 8 GB RAM, powerful graphics card, TV tuner with DVR and remote control, wireless b/g/n, and a BlueRay DVD/CD write drive. It also needs a wireless keyboard and mouse so I can hook it all up to my new HDTV and sit in my recliner and surf the net or play my high def BlueRay movie collection which I also would need for Christmas. But as long as you are getting this for me, you might as well throw in a 24 inch high def monitor to put on my computer desk in the front room for those times I want to take the desktop back in there and just do serious computing. If you need the HP model numbers for these before you go shopping, let me know and I can give them to you.

4. Digital Camera


Next, I need a new digital camera. The one I have is very old, but takes very good pictures. The plastic hinge of the battery door is breaking and is barely hanging on. Once it totally breaks, it won’t operate because there is some connection that gets broken when the door latch is moved to open. However, the main problem now is that it got wet. When we came back from New York, I had it in my carry on bag in the side mesh pocket. I set the bag on the floor in our bedroom and it sat there for several days. Unfortunately, Snickers, my male dog, has a nasty habit of sometimes marking items that are sitting on the floor that are not normally there. Yep, he marked it. Yep, he marked it on the mesh pocket side of the bag. Yep, he got my camera. I have to teach him to mark with a pencil only. My computer magazine rates a Cannon as top choice in the price range I am looking. My current camera is a Cannon so I think I will stick with that brand.

5. Trifocals


Finally, even though it is not a tech gadget, this evening I discovered I really do need new glasses. When I checked the description of tonight’s CSI Miami, I read it twice and still read the same thing: “…a sausage killer runs rampant in Miami.” Eventually I figured out it was a “savage killer.” Much more exciting. Maybe tomorrow I’ll make my own appointment for an eye exam and the new spectacles. Then I can reactivate the Internet on my cell phone.

At Christmas I will still be happy with my new tie, new handkerchiefs, and new aftershave from my grandkids. I will continue to lust in my heart for my tech gadgets and ask for forgiveness.

Friday, November 21, 2008

A Day in the Treatment Room

Yesterday was my IVIg infusion which I get in the chemotherapy room at my oncologist’s office. I am almost always the first one there and the last one to leave as it takes seven to eight hours to drip the medication into me. The actual infusion is quite routine. I begin with two Tylenol tablets followed by a bag of liquid Benadryl. By the time that finishes I have quite a “buzz” going and I definitely could not get behind the wheel of a car and be safe. Of course, my wife and kids may argue that is not that far off from my normal state of driving lately. I don’t know what they are talking about. It is the other crazy drivers on the road…but that is a topic for another blog entry someday. The Benadryl also gives me some very annoying restless leg/restless foot syndrome for and hour or two.

After I get high, I then get a bag of my “friend” – NOT – the steroid Solumederol (methylprednisolone). This stuff causes my blood sugar to go very high, causes me to retain fluids, makes me VERY moody, and causes sleeplessness. In fact, I was still awake when Cheryl got up to go to work this morning. I then went in and laid down for a little while until I had to get Jimmy up for school and I have been up ever since.

After the steroid, I finally begin the IVIg infusions. Yesterday it was six bottles and that is what takes so long. They start it slowly to make sure I don’t have any reactions to it and then after an hour or so it gets bumped up to normal speed, but still slow. IVIg is a human blood product. Also called intravenous immunoglobulin, intravenous gamma globulin, it is treatment in which blood proteins or antibodies, taken from many donors, temporarily replaces the antibodies (immunoglobulins) that my own body has lost due to my disease. This keeps me from getting constant infections like I was getting last year before I started this therapy. Repeat infusions are required to maintain adequate levels. I am on a four to six week cycle and it depends on my monthly blood test results as to when I actually get it. I was scheduled for last week, but this time my levels held pretty well and I was able to delay it for one week. It is a very costly treatment because it can take up to 10,000 blood donors to make one treatment! For many people, the high cost of treatment is often prohibitive as not all insurance companies pay for this therapy. I have only seen the bill for the first time I got the treatment and that bill was over $17,000! That is $200,000 a year! And I will have to have this the rest of my life! I am so blessed that I only pay my co-pay. A young man in my church also needs IVIg but for a different disease problem and he has to pay $500 as his share for each treatment. There have been times in recent years when it has been in very short supply and nearly impossible to get. As the nurse said yesterday, if people ask what they can do to help, tell them to donate blood. I would encourage everyone who is able, to give the gift of life and donate blood on a regular basis.

The day goes by pretty quickly as I nap off and on due to the Benadryl, I eat my lunch that I prepared at home before I left, and if I am lucky, I have some wonderful conversations with some of the other folks who occupy the other chairs during the day. If not, it is a period of time I call “liquid meditation.” A term coined by some good folks over on the CLL Christian friend’s site.

This is the part of the day that is not routine – meeting the different people going through cancer treatment. Over the years I have been going there, first for eight months of chemotherapy and now a year of IVIg treatments, amazingly I very rarely see the same people. It is a fairly small room with six reclining chemotherapy chairs in the main part of the room (three on each side of the room) and two more over in a little alcove. Each chair has a pillow and blankets are available as most of us get cold with all the liquids pumped into our veins. There is a TV that is available in an upper cabinet on the opposite wall from the windows, but in all the times I have been there, it has only been on once. I guess not too many folks are interested in watching a soap opera when toxic chemicals are being pumped into their bodies and they are living in their own real-life soap opera.

Because I am there all day, I take the chair to the far side by the window so I am out of the way, but I can still talk to anyone so inclined. I have had some amazing conversations with folks. Some who are scared to death, some who are so very sick and many who have amazed me with their courage and sunny outlook on life. There have been a few sourpusses too, but I certainly can’t blame them under the circumstances. Last month there was a fellow across from me who read his Bible the whole time and I made several attempts to start a conversation to no avail. There have been some very tragic cases and folks I promised to pray for. Several months ago there was a lady with a cancer that had returned and she had three small children under eight years old. She was on a last ditch attempt at an experimental chemotherapy, but there really wasn’t much hope as it had spread throughout her body. She was only given a couple of months. It brought tears to my eyes and it still does. I still think of her quite often.

Yesterday, most folks who passed through were particularly non-talkative. The lady who came in right after me took the chair directly across from me and it was interesting to watch her set up her space. She has obviously been undergoing chemo for some time as she had lost most of her hair. She was wearing pink shoes (don’t know what you call them, but the rubber type with holes in them) and she had multiple pink ribbons attached, so I assume she has breast cancer. She draped the chair in a beautiful blanket that had angels embroidered all over it. Then on the two arm tables she stacked some books, a portable DVD player, some drinks, an iPod, and a few other things I couldn’t tell what they were. She took a very long time setting it all up and she kept her back to me the entire time. She then crawled into the chair, put on her headphones for the iPod and closed her eyes. Very clearly she was not interested in any conversation. In fact, she barely spoke to the nurses hooking her up to her meds, never made eye contact with me, and never touched any of the multitudes of things she brought with her, other than the iPod. I think she would have been interesting to talk to, but I certainly did not want to invade her space as she was sending very strong signals that she wanted to be left alone. I kept looking for an opening because I thought perhaps she was the person in the room that most needed some human interaction.

Two ladies started talking just before leaving. Both had cancers that had recurred and had now spread. Both seemed to have great attitudes. The one lady who was the most upbeat had cancer that had spread everywhere, from her colon to her skull. So why was she upbeat? A year and ten months ago she had been given one year to live. She said she knew she was going to make it at least to the two year point and her goal was to get to three. With her sunny attitude I think she will, too.

After my lunch, I read a little and then got very sleepy. All the chairs were full, but I couldn’t keep my eyes open and most others were sleeping too. When I awoke, the room was empty except for a lady who was in the chair next to me who wasn’t there when I fell asleep. She was getting ready to leave. She told me she enjoyed hearing me snore. I was quite embarrassed and apologized and told her it looked like I had chased everyone else away with my snoring. She said, “oh no, I enjoyed it. I haven’t had anyone snoring next to me for several years.” I knew there was a story there, but she was on the way out of the room and I was alone to finish up my treatment.

And so another day of treatment passed. So many folks, so many stories to tell. I just wish I could have heard them all.

Friday, November 14, 2008

Catching Up - Misc. Stuff

I don't know where the time goes. I guess my puttering around just gets slower and slower. Sorry I have only had one post in nearly two months. I have written several -- in my head -- but they never made it to the Blog. Remember two posts ago I hired an Ex-Secret Service Agent to guard my lungs? Well now I know why he was an ex-agent. He was over zealous and wouldn't let me get into my own blog! Fortunately, he was called back to Washington after the election and I am now free to blog and ramble as before.

What happened in October? Much.

On the health front, I have been pretty stable again except my IGg levels mysteriously crashed lower than they have ever gone before -- into the lower 200's. So I was called in to have my IVIg infusion early. On the other hand, my platelets soared into the normal range. Very strange. (Last week's blood test, the platelets only came down to slightly under normal and my IGg held very well and I was able to delay this month's infusion until next week! My platelets have bounced around in the 90's and low 100's for a long time, so I don't know what they are doing. I do know that IVIg can raise platelets for some folks, so I guess that is what is happening now. Why it took almost a year, I don't know, but I will take it. White count and lymphocyte count slowly climbing, but that is normal with this disease. The good news is the absolute lymphocyte count isn't quite doubling in a six month period. If it was, that would be an indication for starting chemo again.

Much of October was taken up getting the house ready to have it appraised. We applied for a home equity loan and we were approved in a matter of a couple of hours, but then we had to have the house appraised to see how much they could loan us. In these tough times, it didn't appraise for as much as we would have liked, but the appraiser said he gave us the top amount he could because our house was in fantastic condition and we are the tops in our area.

Also in October, we participated in the Leukemia and Lymphoma Society's Light the Night Walk. Our family team raised almost $3,000. This year we had a lady and her son walking with us. She is fairly newly diagnosed with CLL and I met her on-line. She is a member of both the cllforum and the cllcfriends site. She also lives very close to us! It was a great evening and I enjoyed getting to know her as we walked with our lit balloons.
Why did we have our home appraised? We would like to buy a small cottage or trailer on lakefront or lake access property in upstate NY so we can spend the summers there and be close to our extended families. Cheryl and I left there in 1967 when I joined the Air Force and we don't get back often enough to visit. We are all getting older and we want to reconnect while we still can.

My older brother, Jim and his wife, Barb, celebrated their 50th wedding anniversary with a party on November 1st and Cheryl and I flew up and surprised them. Their kids put on a terrific tribute with an open house at the church on Saturday afternoon and a very nice dinner that night. We were so glad we could make it. My mom had just turned 94 the week before and my other brothers were all there. It was a great time.

It was a fast trip and we combined it with looking at several lake properties scattered from the edge of the Adirondack Park, to the Finger Lakes region, to the Norwich area, to the Whitney Point area. Cheryl's brother, Bill, lent us his car and we put a lot of miles running around the state in four days. We quickly discovered we have champagne taste but we are on a Kool-Aid budget. Nevertheless, we have three possibilities and we are currently waiting for estimates on repairs for our number one choice. (It needs foundation leveling.) My real number one choice was ruled out because the taxes are too high. $3200 in taxes for only three months a year use is way too much. (The price is about 1/3 or our current home, but the taxes are almost the same!) But the lake was by far the prettiest and it had a wonderful setting. Of course it also needed some fixing up. The corner of the cabin can be seen on the right in this picture. The lake was crystal clear and fairly deep off the end of the dock. It came furnished and included a boat. Sigh. Our new number one choice is a very pretty lot right on the lake, but the lake is shallow there and not that pretty as we would have to clear out lilly pads. This also comes mostly furnished. There is a shed out of the picture to the right. It is close to an acre of land. The second picture is looking out the larger window you can see in this first picture.Number two choice is a large double lot across the lake road from a prettier lake. It has an older trailer and has deeded access to the lake, right across the road. We would eventually bring in a newer trailer and use the older one as a "bunk house." However, we can't hook both up to the septic tank, so we would have to add a holding tank or something. You can see it is a large lot in front and goes another 100 feet behind it. Lots of mowing. Same car in both pictures. The deeded access is in the second picture by the tree stump.The third choice is a home/cabin that is in great shape, back at the shallow lake on a much smaller lot. Not much space between the cabin and the water. No work would have to be done to the structure, other than adding a dock, but the price is much too high (and above our budget) compared to surrounding places. We might put a lower offer in on that and see if it was accepted. If it is to be, it will be.

When we left Texas, the temperature was in the 80's. When we got to New York, we were greeted with snow on the ground. The first cabin we saw (the one I really would like) was down a long steep drive and we couldn't drive down because of the snow. We walked through the nine inches of snow, but Cheryl only had loafers with her. Her feet got very, very cold. At her sister's home where we stayed two nights, there had been a foot and a half of snow and a lot of it stayed the whole time we were there. When we returned to Texas, the temperature was 90 the next day. And that is why we love the winter down here!

Jimmy, our bi-polar grandson who lives with us during school, is doing great this year. He had a very rough Spring after a growth spurt and his medications got out of wack. He was suspended from school several times and we weren't sure we could do it again this year. This summer things got under control and we are quite proud of what he is doing and how hard he is trying -- not a single incident and he bends over backwards to do the right thing. He is 13, taller than I am, weighs about 190 pounds, has been shaving since he was 12, and is a fierce football player on offense. They lost the district championship game this week by one touchdown. He played so very hard the entire game.

Jonathan, turned 14 in October and Holly turned 11. It is hard to believe how quickly they are growing up. Cheryl and I attended both of their schools this past Tuesday, Veterans' Day, for special ceremonies they had honoring veterans. As Holly put it, I was invited because I am a "veterinarian" and I could wear my "costume" if I wanted! HA!
Our newest grandson, Gavin, turned five months last week. I have done quite a bit of babysitting for him and a little bit of traveling with them to babysit while his Mom conducts training. We have bonded. I will leave you with a couple of professional pictures she had taken. I think he may have a career as a model.

Tuesday, November 04, 2008

What a Country!

I have been watching the TV with great interest this evening and I have had a ringside seat to history being made. How many other countries in this world can have such a peaceful transition of power amongst major parties? Senator McCain's concession speech was one of the most gracious speeches I have heard. I believe that was the real John McCain on display this evening and perhaps the outcome would have been different if he had more consistently come across that way during the campaign. The words of President Bush, in his congratulatory call to Senator Obama, were also very gracious, promising a smooth transition. Finally Senator Obama's speech tonight had kind words of praise for Senator McCain and his outstanding service and sacrifice for our country over many, many years. Whether the candidate you supported won or lost, you have to respect and admire the peaceful process and the way our democracy works.

What now? I don't know about you, but I am so very tired of the deep division between the parties that has been displayed over the past sixteen years. There is very little bi-partisanship displayed and that is the only way we can have real progress. I still have hope because I saw the way our country came together and put aside all differences after 9-11, if only for a relatively short time. The unity displayed at the time was the true America. Can we achieve that on a regular basis? Perhaps not, but I don't think we need to give up on that goal and we can do better. (I also think President Bush blew a fantastic opportunity to bring lasting unity to the country and a working relationship between the parties right after 9-11 -- my opinion.)

What can we as individuals do? We can pray. We must pray for our leaders. We must pray for God's guidance. We must work for unity without compromising our deeply held values. Did I agree with all that either candidate stood for? Absolutely not. Do I need to support the man elected, whether I voted for him or not? I believe I must. Why? For one thing, Barack Obama will be my president. I am an American and he will be my President and I must pray for him and lift him up every day asking for God to give him wisdom and lead him in the path that is best for our country, just as I would have if Senator McCain was elected. I must pray for all the congressmen, congresswomen, senators and all those in government. If my man or woman was not elected, I can be disappointed, but I must not allow myself to be bitter. I can write and voice my opinion as to what change I would like or what direction I would like us to go in key issues. But, again I say, I must pray.

I congratulate Senator Obama and Senator Biden on a remarkable achievement. I lived through the 50's and 60's and witnessed the injustices and saw the struggle that people went through to achieve the basic rights that were theirs. I grew up in upstate NY and mostly witnessed these things on TV. However, when I was a Junior in High School in 1961, I went on a trip to Mississippi. One night at dark, before we got to Mississippi, we drove past a KKK rally with a huge burning cross in the field and many people in white, hooded robes standing around and walking down the highway toward the rally and I was appalled. I saw state troopers directing traffic and I was appalled. Then later I saw a gas station restroom with a sign that said, "WHITES ONLY." I was appalled (and the room was filthy and this white boy didn't want to use it anyway). Then, in a village park was a water fountain and it had a sign that said, "WHITES ONLY" and I was appalled.

When I was in college, James Meredith came and spoke to us. A few years earlier he fought to attend the University of Mississippi. He finally won a lawsuit that allowed him to attend, but over the course of several days when he tried to attend, the governor of Mississippi blocked his way. Finally at the end of September 1962, a force of U.S. Marshals went with him to guard him. That evening white students began rioting and firing on the marshals guarding him. Two bystanders were killed, 28 marshals suffered gunshot wounds, and 160 other marshals were injured. President Kennedy sent in regular Army troops and James was able to begin attending classes. When he described his struggles to attend college classes with tears rolling down his cheeks, I was ashamed because I realized I didn't want to attend some classes because they were too early in the morning and I wanted to sleep in.

Over the years I have heard the racist comments from friends and sometimes family, including on occasion from my own dad that shocked me. And now we have elected our first black President! Watching the race riots on television in the 60's, I never would have thought this could happen in my lifetime. We have come a long way.

Now, I hope that race will NEVER be an issue in the future and we will only look at the candidate's qualifications and his or her stand on the issues. Have we settled this issue for ever? Perhaps not, but we have come a long way! 2008 has proven than any child born in the USA can grow up to be President and our democratic process still works.

Romans 13:1-7 says:
1 Everyone must submit himself to the governing authorities, for there is no authority except that which God has established. The authorities that exist have been established by God. 2 Consequently, he who rebels against the authority is rebelling against what God has instituted, and those who do so will bring judgment on themselves. 3 For rulers hold no terror for those who do right, but for those who do wrong. Do you want to be free from fear of the one in authority? Then do what is right and he will commend you. 4 For he is God's servant to do you good. But if you do wrong, be afraid, for he does not bear the sword for nothing. He is God's servant, an agent of wrath to bring punishment on the wrongdoer. 5 Therefore, it is necessary to submit to the authorities, not only because of possible punishment but also because of conscience. 6 This is also why you pay taxes, for the authorities are God's servants, who give their full time to governing. 7 Give everyone what you owe him: If you owe taxes, pay taxes; if revenue, then revenue; if respect, then respect; if honor, then honor.

Pray the authorities live up to and follow their God given responsibilities.

Friday, September 26, 2008

Bye - Bye!

I got the results of my chest X-ray and Mr. E. Coli apparently vacated the premises.
My oncologist emailed me and said the lungs were clear and there is no sign of infiltrates. I assume that also means all the ground glass opacities have been swept up clean also.
I have hung out the No Vacancy sign as I don't want him or any of his buddies coming back and infiltrating my lungs, sneaky bugs that they are.
Just to be on the safe side, I also hired and ex-Secret Service agent to stand guard.

Saturday, September 20, 2008

What a Privilege!

My pastor asked me to give my testimony during the worship services this past Sunday. He asked me to speak of my illness and how God has sustained me during this journey. There are two services and one is taped for broadcast on the next Sunday on a Time Warner Cable Channel. I don't like to read when speaking and I don't like to memorize. However I did write it out first to get an idea of what I would say. I knew it should be somewhere around the five minute mark and my first draft was six pages! I could have given the pastor the day off from speaking! I worked and worked and got it down to just under four full pages. Still way too long. I sent my draft to my pastor and asked for help cutting it down. He wrote back and told me not to cut it anymore and he would cut down his sermon. The one suggestion he had was to be more general and less specific in my medical descriptions and explanations. (I forget sometimes we have our own language with this disease.) Well, the first service went very well and I don't think I stumbled at all. The next service I was very aware this was the one being taped and it wasn't quite as smooth. Cheryl said it went OK, but did agree the first was better. Folks on http://www.cllcfriends/ site want me to post it on YouTube or GodTube and I am going to have to figure out how to do that after it is broadcast. In the meantime, I told them I would post what I had written out on my blog. I did add in a few things I could remember that I ad libbed. Now remember, it is long and went about 15 minutes. Also, regular readers of my blog will recognize much of this I have written here before.



MY TESTIMONY BEFORE THE SERMON:


In February of 2006, Troy George asked me to speak to you and that morning we had an ice storm. This week, Pastor Gary asked me to speak and we were threatened with a hurricane. Perhaps in the future folks need to rethink asking me to speak.


I am a deacon in our church and I teach an Adult SS class at the eleven o’clock hour.


Let me give you a little background before I get to my main subject. In November of 2003, after a 20 year fight, my dad died due to complications of Chronic Lymphocytic Leukemia and a very bad heart. In 1991, twelve years prior, after multiple chemo treatments, the doctors said there was nothing more they could do for him and sent him home to get his affairs in order. But dad was not ready to accept that pronouncement. He still had a lot of fishing to do and even some golf to play. He was later placed on Hospice two more times. He said he liked the looks on the caretakers faces when they realized he was still alive and kicking.


As I said, he died in November of 2003. My mom had been staying with us for a few months as she adjusted to life without dad as they had been married 62 years. In April of 2004, I drove my mom back to her home in upstate NY. While I was gone, I had several phone messages on my answering machine and a card in the mail that said my doctor needed to see me right away. As soon as I got home, I made an appointment for the next day. That night I dreamed the doctor told me I had leukemia. That next morning I was sure that was what he would tell me. Instead he said I had diabetes. Wow, is that all? I was so relieved and so happy that all I heard after that was, “waa, waa, waa waa waaa.” He gave me some prescriptions, a bunch of material to read and off I went very happy that I had diabetes! Until I was at the military pharmacy at Ft. Hood, standing at the counter, and they brought out the BIG box of stuff. Then it hit me -- hard and I went into an immediate depression. So I did what any 58 year old fat depressed guy with diabetes would do … I went to McDonald's … for a Big Mac ... and a chocolate shake… super-sized. I was really depressed for several weeks. I put the box of stuff on my kitchen counter and stared at it. I kept my office door at work closed because I didn't want to talk to anyone. I couldn't even bring myself to stick my finger to check my sugar level. I confess to you I made a huge error because I don’t remember praying about it at the time, not even once. But, obviously, someone was praying for me because, God got hold of me, shook me by my lapels and told me this was really silly and the pity party was over and to do something. So I attacked the diabetes with a vengeance, drove Cheryl, my wife of 40 years, crazy weighing food, reading every label, counting carbs, and writing down everything I ate. I lost 70 pounds. What I didn't realize at the time was that God was preparing me for something bigger.


That August of 2004, I was involved in a head on, 50 mph crash on the way to work. Someone fell asleep coming off the night shift, crossed three lanes of traffic, hit me first and then two other cars. Four cars were totaled and we all walked away! God was protecting all of us. However, my back was hurt and I spent several months going to physical therapy. It was getting better and in October I was about to be discharged when, coming out of physical therapy and while I was stopped at a light, I was rear ended…hard… in my brand new car. The lady was not paying attention and never saw me nor the light. My bad back was … back. I continued with therapy but added a chiropractor to the mix.


By February it wasn't better and I was sent to a back specialist. Testing showed I had lots of arthritis in my spine, deterioration of some lower vertebrae and severe osteoporosis. So, I was sent to a specialist to find out why I had osteoporosis at my VERY young age. Well, maybe he didn't say VERY young. Her testing showed something else wonky with my blood and I was sent with a copy of the blood work to make an appointment with another specialist.


I went back to work and started researching my blood work and didn't like what I was finding. I went home and told Cheryl. Fortunately my appointment with the hematologist was in only a day or two. I really was fine and not too upset because we didn't know for sure and it wasn't real.


When Cheryl and I saw this new specialist, he took more blood, we waited for the results and then he came into the room and confirmed he was pretty sure I had CLL, a type of leukemia; the same disease dad had died with just 15 months prior. Then it was real.


I remember walking out of there with Cheryl into the sunshine and wondering why the world seemed to be going on as usual. Didn't they know what I had just been told? I didn't sleep that night. That night I spent what I call my grieving night. I was thinking of all the things I might not get to do and the things I might miss out on. I might not see my grand kids grow up. What my family, especially Cheryl, would do without me --all those type of thoughts and worries. I felt myself going into a depression and I didn't like it. But this time, I also spent a lot of time in prayer.


The next morning I decided that spending time being depressed just wasn't going to hack it and was a waste of time and was not pleasing to God. God had already taught me that lesson when I was depressed over the diabetes and how insignificant that seemed now. Right then I decided I was going to turn it over to Him. It was like a huge burden being lifted. Now, I don’t consider myself to be a strong person and I didn't think I could do this on my own. But, guess what? I didn't have to. I had God with me every step of the way, along with a supportive family and supportive, praying, church family.


After all the different tests, including two lovely bone marrow biopsies, I found out I not only had the leukemia, a cancer of the blood and bone marrow, but also a type of lymphoma, a cancer in my lymph system, a disease very closely related to the leukemia. Neither can be cured at this point, but both are treated the same and we just keep pushing it back as long as we can. But initially I was put on Watch and Wait, or as some call it, Watch and Worry. Watching the disease and waiting for it to progress to the point of needing treatment.


Psalm 6:2 says, “Be gracious to me, O Lord, for I am languishing; heal me, O Lord, for my bones are troubled.” And my bones were very troubled.


January of 2006 we reached that point and I began chemo treatments. I had a great initial response but then it tapered off. After eight rounds, my doctor called a halt in July of 2006, to give my body a rest. Another bone marrow biopsy in August showed that my marrow was still infiltrated with 50% of the cells being cancer cells (I started at 90%). He said we would stop for three to six months and once things ramped up again we would do more treatment. However, the Great Physician’s time table is much different from my earthly physician’s. Although coming close a couple of times, I still have not yet started chemo again and it has been two years and two months! God is good.


Last November, after having nine different infections, including pneumonia twice, I started doing day-long infusions every four to six weeks, in order to boost my immune system. This treatment has been working.


However, a couple of weeks ago we hit another bump in the road. A CT Scan in preparation for going for an appointment at MD Anderson, showed something wrong in my lungs. My local oncologist called me at home Monday night and asked how I was feeling. He couldn't understand why I wasn't “sick as a dog” and said he was sending me as a walk-in the next morning to a pulmonologist. Earlier that day I had picked up a copy of the CT Scan and I hit the Internet researching what the scan showed. Again, I didn't like what I was finding. Worst case scenario was lung cancer and this leukemia has with it a greatly increased risk of lung cancer. A better scenario was a serious type of pneumonia.


But, I was pretty calm and I sent out a request for prayer and talked with the folks on the Christian site. At that point I only emailed the deacons because I didn't know for sure what I was facing. The next morning I saw the pulmonologist. He assured me that he doubted it was lung cancer, but might be the leukemia cells invading the lungs. Hmm, not lung cancer but cancer in the lungs, oh goody. He scheduled a lung biopsy for the next Friday. He put a tube down into my lungs, looked around and took samples of lung tissue. I had to wait another week and a half for results. But, I was totally calm with this and I knew God would help me deal with whatever we had to deal with. Many were praying for me.


The results were not at all what we expected. I had an E. Coli infection in my lungs and my body was not fighting it due to my weakened immune system. I didn't ask how it got in there and I am not sure I want to know! I have been on a strong antibiotic and a week from tomorrow I’ll get an X-ray to make sure Mr. E. Coli has vacated the premises. Strange how circumstances can be that I celebrated and thanked God for me just having an E. Coli infection in my lungs.


So, what has God done for me through all this? Everything. Just a few examples: He gave me a loving and supportive wife, children, grandchildren and extended family. He has kept me calm. He led researchers to unique treatments. One of my drugs comes from mouse proteins and Chinese hamster ovaries (God has a sense of humor, too.) He allowed me to keep my weird sense of humor, even joking in the chemo room.




Here I am receiving my mouse parts and the strange reaction it was having on me. Ever since then, I really like cheese and have a difficult time passing by a trash can without rummaging through it.


He has protected me. During chemo I had none of the terrible things they told us would happen. I never had nausea, I didn't have mouth sores, I didn't lose my hair … but that is hard to tell for sure. I was told I probably wouldn't feel like eating, so I gained ten pounds to put on a little cushion before starting. I not only gained the cushion, I gained the whole sofa. In fact, forty more pounds. Steroids are NOT my friend. He allowed me to continue working for the first couple of years, traveling the state for my job, including during chemo. He has allowed me to not have to miss teaching my SS class due to illness except for one Sunday in all this time. (I do miss afternoon and evening meetings as I get more tired as the day goes on.) He allowed me to be approved for Social Security Disability on the first application. I created a blog to document my journey so my family and friends could keep up with me, but now nearly ten thousand visits have been made to my site. Last week people from 13 different countries visited. I have talked there about my faith in God and I can only pray that others have been touched by God through my writings. Two years ago He helped two people create a Christian website, CLL Christian Friends, which now consists of almost 650 patients or caregivers of this type of leukemia or lymphoma. We pray for each other, play games, educate each other, share Bible verses, joke with each other and have a good time. We even have one of the world’s premier doctor researchers of this disease from England as a member who answers questions. He is a wonderful Christian man. Earlier this year a Jewish lady joined our site for support and ended up surrendering her life to Christ as a result of the witness there of one member in particular! Others have returned to God after many years and recommitted their life to Christ. God can use even this terrible disease for good!


I wear this band that has the words Faith, Love, Hope, Win and that is my motto. (Note: I talked about this motto at length and how I came to adopt it from David E. when I spoke in Feb 2006)


Finally this church has been so very, very supportive. Each Sunday someone, and usually many someones ask me how I am doing. I get a hug every Sunday from Charles Avery. But more importantly, this is a praying church. We have a praying pastor... a praying staff … praying deacons ... praying Sunday School teachers… and praying members. My class is a praying class and is so faithful in this area.


When I do hit a bump in the road, I email my class and Judy Pack and she sends it out in an email immediately to those on the prayer chain. If you have not signed up to receive these emails, I would encourage you to do so. It is such a wonderful ministry to be able to pray for our fellow members who are hurting in some way.


Intercessory prayer works! Jesus prayed many intercessory prayers for not only his disciples, but for many others, including his enemies. He taught us to pray.


As the pastor has said, we are coming to a new chapter in our church and we are excited for what the Lord has in store for us. But that requires prayer. We have a faithful staff but we are called to pray for them. We are going to be holding a revival soon and that calls for prayer. We have many people with serious needs in our fellowship and that calls for prayer. We have many lost people in our city and that calls for prayer. We are Christians and that calls for prayer. We are all so very blessed and that calls for prayer of gratitude and thanksgiving. I am blessed.


Hebrews 11:1 says, “Now faith is being sure of what we hope for and certain of what we do not see.”


God is good and what a friend we have in Jesus.

Wednesday, September 17, 2008

Light The Night

Another year has past and it is time for the annual Leukemia and Lymphoma Society's Light the Night fundraiser. This will be my fourth time walking and I just praise God I am still physically able to participate. Last year it was held in Austin at the new Dell Children's Hospital at the old airport grounds. It will be there again this year. We preferred it out here in Round Rock, walking around the Dell Diamond baseball stadium, but I have to admit, there were a LOT more participants down there and a lot more money was raised for research and support of blood cancer patients.

The local LLS does a good job and is very active. They hold patient education seminars, provide financial assistance for those who apply and of course support research through the national HQ.

I haven't added it up officially, but my family and I raised about $8,000 in the last three walks. Last year I was VERY late getting my site up and I only gave myself a week before the walk. Yet family and friends came through with a total of over $1,600 in a week's time!

This year, as always, I will be walking in memory of my dad and all the wonderful friends I made who have now died from leukemia and lymphoma. There have been many who died just this year whom I came to know (or their loved one) on the CLL forum or the CLL Christian Friends sites. My family walks in honor of me and memory of Dad/Grandpa.
It really is an emotional sight to see all the balloons on that evening. Red ones are carried by those who are walking in memory or support of someone and white balloons are carried by survivors of blood cancer. Some walks around the country use Gold for those walking in memory, but our chapter hasn't started that yet.
The hardest sight is seeing the little kids who are bald because they are currently going through chemo. But, they always have a big smile. I remember last year seeing a little girl who was probably three or four. She was totally bald, had dark shadows under her eyes, but was dancing energetically to the band that was playing and she was clapping and laughing joyously. What a spirit. Sometimes there are children or adults in wheelchairs who are currently going through chemotherapy. Be we are all united in wanting to find a cure.

If you are reading this and feel led, I would appreciate your support. I know many of my readers also do the walk in their local communities around the country. It is pretty easy to give on line by logging into my site and then going over to the right side of the page and scroll down and click on any amount or click other and type in whatever you like. There is nothing too small to help. Then click the red donate button and follow the directions. If you prefer to mail a check, send me an email and I will give you my address. My email is jtw890 at aol dot com. (Of course use @ in place of at and . in place of dot and all with no spaces. I do that to stop the auto spammers.) Everyone's dollars add up and there is power in numbers. My page is:


I believe God is using researchers in many places to come up with new and better treatments and they will eventually find a cure. However research takes lots of money and this is one way of supporting that research. There are treatments available to me, that were not available to my dad and new discoveries are made on a regular basis.

If you are not able to help, that is OK too. You can support me and my family with your continued words of encouragement and of course your prayers which mean so much to us.


Monday, September 15, 2008

Please Pray for Those Affected by the Hurricanes

There are many hurting folks along the Gulf coast and along the path of hurricane Ike. The destruction was widespread and very devastating. Some have lost family and friends to the storm. Many have lost their homes and businesses. Many are living in difficult circumstances right now without power and other utilities, or in shelters scattered far from home. Some areas of Louisiana hadn't recovered from Gustav and then were hit by Ike.

I have to confess I had mixed feelings watching the rescue of folks who had refused to leave. I was thankful they were being saved and I felt compassion for the peril they were in. However I also felt frustrated and even angry that they were so stupid after all the clear warnings and now they had not only endangered their own life, but the lives of the rescuers. I didn't feel like that during hurricane Katrina because folks just didn't know. I was horrified at the plight of those folks. This time, officials clearly said leave or die. Of course then I can also think back to some very stupid things I have done in my life, too. I try not to judge, but I don't do a very good job of it and I seem to be getting worse the older I get. In fact Cheryl now reminds me often when I make statements that are critical of others. Is this what they mean when they talk about grumpy old men? However, I digress, as usual.

Over the next several days, people will be returning to assess the damage. Many will have lost everything, but they are still alive. I don't know how I would react in that situation and I can't know for sure unless I experience it, but I would hope I would have the attitude that they are just possessions and God had spared me and my family. There are so many more important things. I am reminded of the verse that says, "What good is it for a man to gain the whole world, yet forfeit his soul?" Mark 8:36

The Austin area was spared from the effects. Earlier in the week, Ike was predicted to come right over us and still be near Category I. As the week progressed the tracks were predicted further and further East and that is what happened. Saturday we were still predicted to have rain most of the day, which we really need. However, Saturday was very cloudy and breezy but no rain. Not a drop.

My brother called Saturday to see how we were as he said the TV said it was the end of the world down here. He didn't know I was in WalMart shopping and I told him we had terrible damage at the house. At first he really did sound concerned and asked what kind of damage. I told him the welcome mat on our front porch that says, "What happens at Grandma's, stays at Grandma's" had been blown over and folded in half!! I'm surprised my family still calls me.

Just Another Update

Golly, time sure does pass by quickly. I didn't realize I didn't update the results of my appointment with my local oncologist. I did on the CLL forum and the Christian friends site and I guess I just thought I did here, too. Fortunately I think I can still blame it on "chemo brain." Surely it's not just old age or normal forgetfulness.


I don't think my oncologist was too thrilled with the blasé attitude of my pulmonologist. He asked me if I was sure he didn't want to see me again and I assured him that was the case. He gave me a referral for a chest X-ray in three weeks to make sure Mr. E. Coli has vacated the premises. Of course that is now next week. He also wanted me to have my IVIg infusion even though the blood work at MD Anderson showed I was still above 700. He said I was close to borderline then and it will just keep going down and he wants me to have this boost while fighting the infection. He wanted me to have it then, as scheduled, but I wasn't prepared because I was sure I wasn't going to have it. I had errands planned for the afternoon and I wasn't dressed for it. I get so very cold before it is over, even with their blankets, that I always wear a long sleeve winter shirt and bring my coat. I do get some looks walking into the building since it was still close to 100 degrees most days. I start out OK, but by the time we are done I am bundled up and under the blankets and snoring away. (They must love me in the infusion room -- not.)


So, that Friday I had the infusion. I had the normal headaches after and the sleepless night due to the bag of steroids. Strangely, I keep thinking I might be feeling the infection in my lungs, but I am not sure. You know how it can be when you become acutely aware of something being wrong and everything is magnified. I did tell the doctor that for a very long time it often feels like I am about to come down with a chest cold; that feeling one gets a day or two before. That is what it still feels like. But it never progresses. Please pray the X-rays will show an all clear.


I may have figured out how the e. coli bug got into my lungs. I did find one reference that even though it was rare, alcoholics have an increased chance. Now don't get ahead of me and don't jump to conclusions. I don't drink at all, never had a problem with alcohol, (well there was that time in college I try to forget) and the last time I had anything was a glass of wine at a castle on the Rhine river in 1971. WARNING: If you have a queasy stomach, please skip the next few sentences. Even though the site didn't explain, I think it is because heavy drinkers pass out, vomit and then inhale, so if the e. coli bug is in the digestive system, it gets into the lungs that way.


I do have trouble with acid reflux and, even though I take medication that controls it pretty well, about once a month I still wake up choking. I am a very heavy sleeper, so the choking is pretty bad and it takes a long time to clear my lungs. This may be the explanation. At least I like that explanation better than the fact I inhaled contaminated meat, or especially, um, uh, fecal matter.

It really isn't that important how he got there, I just want him gone!

Wednesday, September 03, 2008

How Did He Get In There???

I went to the pulmonologist today for results of my lung biopsy. Great news. Not leukemia cells infiltrating my lungs. Not another cancer. Not pneumonia (at least he never used the term). So what is it? Nothing I would have ever come up with playing the guessing game.

E. Coli infection in my lungs!

Strange I am happy about having an E. Coli infection, but everything is relative, isn't it? My pulmonologist didn't seem worried, so neither am I. In fact I don't even go back to see him again...hmm. I see my oncologist tomorrow for my regular appointment and I will get his opinion on all of this.

Of course I did my usual research but didn't discover very much. Here is a quote from an article in the Journal of Clinical Biology:

"Escherichia coli is the most abundant facultative anaerobic bacterium in the normal human intestine. Its presence is clearly associated with infections of the gastrointestinal tract, urogenital tract, and peritoneum and occasionally with infections at distant loci after bacteremia. However, it is rarely associated with pulmonary infections "

If your eyes glazed over in the last paragraph, basically Mr. E. Coli is often found hanging out in the colon causing problems, and even in the urinary tract, but he is rarely found lounging around in the lungs. I found lots of references to the colon. I don't think I want to know how he got up into my lungs, the high rent district. I do know I want him to vacate the property. And soon! I got my extra strength prescription of Levaquin and I served my first eviction notice this evening. I will serve him one notice a day for seven days and then he better be gone. I want him out and back in the slums where I will flush him out for good! I am hoping my onc will at least order a chest x-ray in a couple of weeks to make sure Mr. E. Coli really did vacate the premises and didn't leave any of his kids behind.

As I said in the previous post, I don't follow the norm with things, so why should I start now?

I promise I will cover my mouth if I cough around you.

Thanks for your prayers!

Saturday, August 30, 2008

MD Anderson Visit

I thought I better post about our visit to MD Anderson Cancer Center in Houston on Monday. Not too many surprises, but also didn't learn much new, although I don't know if I was expecting to learn anything new. The two doctors I saw both acknowledged I am still moving closer to chemotherapy treatment again, but I am not there yet. Some areas of blood work were actually better. Platelets were above 100 which pleased Dr. Wierda. Very surprisingly, my IgG level is still in the 700's so I won't need my IVIg infusion next week as scheduled. That means it held for two months this time! White count and absolute lymphs are still inching upwards, but absolute lymphs aren't doubling in the six month time frame yet. I did report I am beginning to have relatively mild night sweats. He also could feel the lymph nodes being larger, which I knew because they bother me and, of course, the CT Scan reported they have grown. My spleen is still holding. I think there were 13 areas on the blood reports out of normal range, either too high or too low.

Then we discussed this lung stuff. He said if it is leukemia cells (CLL) infiltrating the lung then that would indicate aggressive disease and we would need to start treatment. He also said if that is the case he would also refer me to the transplant doctor. (I hate it when he says that, and it is the second time he mentioned referral for bone marrow transplant.) However, he is expecting it to be an infection and specifically mentioned PCP - a type of pneumonia. When I asked him why, if it is an infection and my IgG levels are still up, why am I not showing symptoms and not mounting a defense with fever, coughing, etc. He did not have an answer and said it was a mystery. (I also asked his associate the same thing before seeing Dr. Wierda and he didn't have an answer, either.) He wants me to have the results of the lung biopsy faxed to him. I also asked him if it is an infection, what can I do to watch for these and to know when I have one if I don't have symptoms. I had pneumonia last year without any symptoms and that one also showed up on the CT scan, but just as fluid in the lung. Again, he didn't have an answer other than to say I just had to be very careful. The doctor said he could hear "crackling" in my lungs. He also said he would prefer I not have so many CT scans, even though he knows the pulmonologist will want them. He wants me to encourage the pulmonologist to try using regular x-rays even though he probably won't want to do that. The reason being the scan's give clearer pictures, but it is also a lot higher radiation exposure.

Dr. Wierda also said he would want another bone marrow biopsy before starting treatment. I told him that was fine, but I wasn't having it done there! That is where my most painful one ever was done. The two done locally I didn't even have soreness afterwards. He said that was OK, but I had the opposite experience of most people (most people find the biopsies there more tolerable as they are the experts because they do so many). Which led to a discussion of how I don't follow the norm anyway. He said before he came in they were just discussing me as the guy with all the good prognostic markers who still has advancing disease and who is a prime example of why they obviously have not discovered all the important indicators yet. Similar to a statement he made last time I saw him.

Bottom line, unless I have leukemia cells infiltrated into my lungs, he only wants to see me again in four months. So, I get another pass on chemo treatments for the time being.

I didn't hear from the Pulmonologist this week other than a call late this afternoon to remind me of my appointment on Tuesday. When I saw the caller ID, I thought we might have an answer, but not yet.

Because of the prayers of many, I really am in a good place mentally with this and just anxious to deal with whatever we must deal with. God is keeping me calm. I'll post Tuesday evening after I see the doctor and I sure hope he has results by then.

Have a great holiday weekend!

Saturday, August 23, 2008

Ground Glass Opacities - Oh My!

I have had another little bump in the road. I had a CT Scan a week ago Friday in preparation for my trip to MD Anderson tomorrow (Sunday) afternoon for a Monday appointment. My lymph nodes have been growing and this tells how much and where. (The report talked about "innumerable" nodes that apparently glowed - must be the report writer got tired of counting- ha!) And yes, they have grown, but not as much as they feel like they have grown.

However, the scan showed something else that captured my doc's attention. I will skip some details (believe it or not), including my self-diagnosis on the Internet that I sure didn't like. Earlier this week my oncologist called me at home around 6 p.m. and said he was arranging for me to see a pulmonologist on a walk-in basis the next day and asked me to be there at 8:30 when the pulomonologist's office opened. The reason for my visit being that both lungs in the lower lobes showed multiple areas of "ground glass opacity" on the CT Scan. Now, I promise you I have not been inhaling broken windows, broken dishes, or even fiber glass insulation. Apparently it is a type of fluid in the lung that looks like ground glass to the docs when it displays on the scan.

I was at the pulmonologist's office bright and early, and he saw me as soon as he arrived. I really, really liked this guy even though he failed the "He Can't Be Younger Than My Kids" test. As Cheryl said, he looks like he is ten, but I say early to mid 20's. My oncologist did say he was very good and recently trained. He was very thorough, took lots of time with me and explained everything in detail, going through the CD ROM of my scan explaining things and didn't chide me for doing Internet research and trying to self diagnose - actually, I was almost spot on with all the possibilities, but I had the possibilities in reverse order of likelihood.

The pulmonologist said this is rarely caused by lung cancer, sometimes caused by heart problems, and almost always caused by bacterial or viral infections. The various types of pneumonia that present this way are often quite nasty. This doctor is puzzled because I am not showing any symptoms and, if I do have any of those types of pneumonia, I should have fever, etc. As my oncologist said when he called, I should be "sick as a dog."

What other explanation? Well, the pulmonologist suggested this might be infiltration of leukemia cells into my lungs -- not lung cancer, but cancer in my lungs. Oh goody. Also, perhaps it is a pneumonia infection and my compromised immune system refuses to mount an attack against it and therefore no symptoms of fever, coughing, etc. If you remember last year, I did have pneumonia without any symptoms and that one also showed up on a CT Scan as fluid in my lungs -- but not ground glass. Antibiotics and a couple of weeks later my lungs were clear again.

My type of Leukemia/Lymphoma is known for spawning other cancers and we have a greatly increased risk for lung cancer, whether one smoked or not, and I used to smoke. Lung cancer was my initial fear, but the pulmonologist really feels this is a remote possibility right now.

Well, we had to find out which of these alternatives is the culprit. So yesterday, Friday morning, under conscious sedation, (Cheryl says it was unconscious sedation) I had a flexible scope inserted through my nose and down into the bottom of my lungs.

We had to be at the hospital at 9 to fill out paperwork etc. I insisted on a blood test just to make sure my platelets were still up. Sure didn't want to bleed out on the table. Cheryl dubbed me "doctor Wagner" as I was explaining to my nurse as to why I wanted a CBC test first, just to be safe. Turns out they were fine at 107 (above 150 is normal, but not dangerous until below 50). I was hooked up with an IV in my hand because they didn't want to use my port as the nurse said that gives higher risk for infection. Not sure that is true, but I was in no position to argue. I was then taken into an operating room about 11 a.m. There were two nurses and a guy who was going to operate a fluoroscope machine, and my doctor. They hooked me up to oxygen and then the doc stuck two, maybe three, very, very, very long Q-tip sticks with lidocaine way up my nose till I thought they were going to come out the top of my head. Then he left them there as I tried to wipe away the tears without anyone noticing. Then he leaned over me and asked if I was getting sleepy yet. I said, "No, not at all" and that is the last I remember until I woke up at home in bed at 8 p.m.! Actually I remember a couple of little snippets -- at some point my chest hurting really bad and my throat was sore. Probably that was some point during the procedure as I imagine a tube down to the bottom of my lungs through my nose would hurt. Then I remember a quick scene of Cheryl driving her car up to the front door of the hospital to pick me up and that is it. Cheryl said she thought they sent me home way too soon as I was definitely out of it. She had to dress me and she said I didn't talk all the way home, just zonked out. Then she and Jimmy had to get me into the house. She said I flopped onto the bed stomach down with my legs hanging way off and she and Jimmy had to pull me up the rest of the way as I wouldn't move. I woke up at 8 p.m. and couldn't figure out why I was home. I had a bowl of soup, napped in my chair, finally went back to bed at 11 p.m. and slept until 9 this morning.

The doctor told Cheryl he saw just what he expected (not sure what that meant), collected some of the fluid that was collecting in the bottom of my lungs and took several lung tissue biopsies. I have an appointment to see him on September 2nd. He said he would call if he got any reports back, but it can take up to two weeks for the results of all the cultures and tests.

He also said he thought I had sleep apnea and wanted to send me to a sleep specialist. Well, I don't need another doctor and I don't have trouble sleeping. Apparently he said I would snore during the procedure and then semi-wake myself up snoring. I don't know how he could judge anything like that while I was under heavy drugs. I would think snoring with a tube through the nose and down into the lungs would wake a dead man up.

There are two other "fuzzy nodules" visible in my lungs on the scan that are in areas he wasn't able to get to or biopsy, so he will track those with further CT Scans every six months, looking for growth and or becoming more solid.

I am coughing today, but I guess that is because he stirred things up in there. No sore throat or pain, though. I'll let you all know when I get any results.

So, my schedule for the next two weeks: Travel to Houston tomorrow after church and get blood drawn at the hotel lab tomorrow afternoon. (The hotel is the Rotary House International which is part of MD Anderson complex.) MD Anderson appointment on Monday with my specialist, Dr. Wierda. Tuesday, Sept 2, back to see my pulmonologist and hopefully get some results. Wednesday, Sept 3, my local oncologist appointment and my day long IVIg infusion. If this is pneumonia, I will be a little surprised as these very expensive IVIg infusions are supposed to help protect me from infections.

As always, we covet your prayers for a good report and that it will be something easily cured.

Thursday, July 31, 2008

Itching to go on Vacation - Literally

Itching! Rash! Weirdness!...and Trouser Dermatitis
Ah, the joys of Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma. (Many would argue weirdness and I have been together long before my CLL/SLL.) I don't know for sure what causes the itching, but many, many folks with CLL complain about it. I may have discovered one cause in my most recent bout with the madness.
My first bout came a few months after I completed my last round of chemo and I wrote about in this blog in November 2006. At that time the itching was accompanied by rash that was widespread over my body. Since that time I have had a few minor periods of the itching without the rash. I have prescription cream I use if it goes beyond a few hours. I had suspected it was a delayed reaction to the Rituxan portion of my infusions as I had read somewhere that it could happen. However, now it is way too long since I have had Rituxan -- two years. But none of the itching episodes I had were nearly as severe as that first time -- until we went on vacation to upstate NY a couple of weeks ago.
The itching started on my upper legs on the Sunday before we left and continued to get worse each day. I started slathering on the prescription cream (it comes in a large tub), and wore sweat pants to bed so I wouldn't slip off the bed or get the dog stuck to my legs. Wednesday morning on the plane the itching was progressing down my legs while still driving me crazy on my inner thighs and the back of my knees. I willed myself not to scratch the itch, because once I do, it goes into overdrive. Sitting on a crowded plane scratching your legs rapidly with both hands going, "woo, woo, woo," is not cool. My shoes were feeling tight, but I didn't think much about it as that sometimes happens on a plane.

We arrived in Albany and were met by two of my wife's bothers and driven to another brother's home in Utica. (He let us use his cadillac for the week! Thanks, Bill!) I tried not to think about the itching, but it was good to get out of my dress shoes. On Thursday, we drove to Endicott to see my Mom and my older brother and his wife. We spent the night there. Throughout the day the itching got worse, my loose tennis shoes felt a little tight. Just before going to bed I looked at my feet and they were really very swollen.

Friday morning the itching was getting worse and my knees didn't want to bend. My shoes were killing me. Finally I tore off my shoes and socks and wanted to take my pants off too, but again, not cool while visiting with relatives you haven't seen in a few years. Cheryl saw my feet were hugely swollen and covered in a red rash. She went and got the ointment and made me pull up my pant legs. A slight, red rash was present, but the swelling was very pronounced. She slathered the lotion all over my legs from just above the knees, down. Normally I have "chicken legs" and little muscle tone anymore, but she said my legs were hard as a rock because they were so swollen. Fortunately my jeans were loose to begin with. My brother gave me his recliner to sit in (why didn't I think of this before?) and I put my feet up.

I knew the redness on my ankles and the tops of my feet was not really a rash as it looked different from the rash on my legs, it did not itch and this happened in November 2006. At that time the dermatologist said the redness on my feet was petechiae - bleeding under the skin due to the swelling. Those of us with leukemia often have trouble with low platelets and when they get too low, petechiae is often a result. Although my platelets are lower than they should be, they are not in the danger area at all. Of course I was beginning to wonder if perhaps they were dropping, but somehow I really did not believe that to be the case. Besides, we had too much traveling to do to take time out to see a doctor!


Petechiae - Sometimes it looks more like pinpoint red spots. If you do a Google image search you will see various examples.


That afternoon we traveled to Morrisville to visit and stay with one of Cheryl's sisters. By that evening the swelling was not quite as bad. I kept them elevated the best I could.

Saturday we traveled back to Utica to have a family reunion of sorts with Cheryl's family. Several of her brothers and sisters get together each Saturday to play cards, but since we were going to be there, all who live in the area came over. We had lots of food. There were about 20 adults and 20,000 kids. I played a few hands of cards but then moved to the recliner so I could keep my feet up. I pretty much kept in the conversation of the card players at the table closest to me, but also somehow managed to fall asleep for a little bit, even with all the confusion. Cheryl wasn't pleased but at least she wasn't real mad -- one of the times CLL diagnosis actually comes in handy.

Saturday night we drove back to Endicott and Sunday morning left with my Mom to drive down to New Jersey to Lake Kittatinny to visit my youngest brother. He lives in Manhatten, but they have a summer lake home there. We finally met little Ruthie whom they are in the process of adopting. A really beautiful little four year old girl. They have been foster parents since December. The itching and swelling was much better and the petechaie was disappearing from the top of my feet, if not from the ankle area.

Sunday afternoon we drove back to Endicott and stayed there until it was time to leave on Tuesday. By this time the swelling was gone. Tuesday we drove to Norwich to visit another of Cheryl's sisters and a friend they used to live next door to, then on to Utica and finally over to Albany to catch an early morning flight on Wednesday (had to get up at 3:15 a.m., Texas time).
My feet swelled some on the plane, but not bad. Since we have been back (a week and two days), the itching keeps trying to make a comeback and Wednesday it was driving me nuts, but is back to a minor annoyance that I can pretty much ignore.

Perhaps the answer:

So what causes the itching? I don't know for sure, but MAYBE I know the cause of MY latest episode. Cheryl had an epiphany that may have been the answer. That Friday, when it was real bad and Cheryl had me pull up my pants legs, she asked if I was wearing new jeans, I said, "yes" and she asked if I had washed them first. I said, "no." I had also worn them the day before as I brought just enough jeans to wear each pair two days on the trip. She said she bet that was it as I also had worn new dress slacks on the plane that had not been washed. But I said the itching had started last Sunday. She asked what I was wearing then. UH, another new pair of jeans I hadn't washed. She made me go change and put on an older pair and from that point on it started getting better. This past Wednesday after being back a week, it started again, and I had on the new pair of jeans I wore on the trip, but they HAD been washed, so I don't know. Maybe I have to wash them several times.

I have worn new pants before without washing and it hasn't happened, but as my immune system weakens, who knows how or why it reacts the way it does. A friend of ours who deals in fabric says you always should wash new clothes before wearing because a lot of foreign fabric is very high in formaldehyde content. I Googled it and was amazed at what I found. Here is an extract from one site:

Frequent or prolonged exposure may cause hypersensitivity, leading to the development of allergic contact dermatitis. This may occur through skin contact with formaldehyde containing products or with clothing made from fabrics containing formaldehyde. Dermatitis caused by clothing tends to affect parts of the body where there is greatest friction between the skin and fabric, for example "trouser dermatitis" is usually apparent on the inner thighs, gluteal folds and backs of the knees.

Who knew? If Adam and Eve hadn't messed up, I wouldn't have to worry about this. So, my new self-diagnosis is "trouser dermatitis." Sounds pleasant, doesn't it? I bet the next time I am on a crowded plane I could get an empty seat next to me by just scratching and constantly muttering, "darn this trouser dermatitis, it just keeps spreading." Of course I better wait until we actually take off and get away from the airport.

I know this was a lot of detail, but I did manage to sneak our itinerary into the account. But, the main reason I wrote in detail is that I get reports of key word and phrase searches that bring folks to this site. An extraordinary number of those searches are about CLL and itching and rashes. So, I hope this might help someone looking for information.

I'll post a few photos from my trip in a few days. HEY, IT'S MY BLOG AND I CAN POST WHAT I WANT.... LOL

Monday, July 28, 2008

Three Months? Nope, I'll Take TWO Years! -- and still counting!

July 2006, after 8 rounds of chemotherapy, my doctor said my body needed a break and we were going to stop the chemo for a while. I hadn't achieved remission, but, after a great initial response, the later infusions were making little positive difference. My doctor said we would wait three months and perhaps we could squeeze six months out of it before starting chemo again and he was pushing for stronger stuff.

I had already resisted the initial treatment he wanted and what the specialists at MD Anderson had suggested -- FCR -- Fludara (fludarabine), Cytoxan (cyclophosphamide) and Rituxan (rituximab). I wrote about this at the time, but my main concern was the increased risk of infection because the fludarabine wipes out the T cells to a very low level, just like someone with a full AIDS diagnosis. And, it can take a couple of years for the T cells to recover. After lots of research and a compromise with my doctor which I also wrote about at the time (January 11, 2006 entry), I went with Cytoxan, Rituxan and Prednisone. The protocol usually includes Vincristine, but it often causes neuropathy and since I am diabetic and have a little neuropathy already, we left that out as he was afraid of permanent damage. My doc called it a wimpy treatment but said he would honor my wishes but when it failed he wanted to go with FCR. After eight rounds I was beginning to doubt my decision, especially after a bone marrow biopsy showed I still had 50% cancer cells in my marrow (it was 90% infiltrated 7 months before chemo began).

Well, fast forward two years and I still have not had any more chemo and I am more than pleased with the results I got. No, I didn't achieve remission, but I got a great partial response and, what I call, a wonderful intermission! There are folks whose actual remission didn't last two years. I know I am moving closer to treatment again, but I think it is great. Of course I have to rub it in a little with my doctor and he admits he is very surprised. What do I attribute it to? I firmly believe it is all the prayers of others on my behalf. The Great Physician's timetable is very different from my earthly physician's.

I have been getting IVIg infusions every two months now and that is keeping infections away so the all day inconvenience and the horrible cost to my insurance is worth it. Last year, before starting IVIg infusions, I had nine infections, including pneumonia twice, this year only one slight cold and a very strange incident a week and half ago while on vacation in NY. I will write about that in a day or two. I think the IVIg is also helping to keep my platelets up around 100, so that is an added bonus.

I go down to MD Anderson for a follow up appointment at the end of August. Even though my neck nodes are giving me more and more discomfort as they continue to grow, I think I will get another pass on a treatment recommendation. We'll see.

Saturday, July 12, 2008

What Joy

BIRTH

A little word meaning the beginning of life, but packed with so much more meaning than that. A couple of days ago, I wrote about death, the end of life, so I wanted to talk about a more pleasant subject on the opposite end of the spectrum.

On June 2nd, my newest grandson was born. Gavin Elliott was a couple of weeks early, but weighed in at 10 pounds 3 ounces and was 22 inches long. What joy a baby brings. The innocence, the promise of great things, a new beginning, just that soft skin and "baby smell" (no, I'm not talking diapers here!). It is even more joy for grandparents because there are no 3 a.m. feedings! He pretty much is skipping those now, anyway.

I don't think I am prejudice, but he is the cutest thing I have seen since my other grand kids were born many years ago - they are now 13, 13, and 10. And his Mom, Grandma and big brother agree with me.

A new birth can help take the sting away from death that sometimes surrounds us. This was clearly illustrated to me 35 years ago. My grandmother died the night before my youngest daughter was born. I was close to "Nanny" (or "Nan" as I called her as I got older) because we lived right next door to her until I was in the third grade. Then we moved less than 20 miles away so I saw her at least every week. As a teen with a driver's license, I would go to see her - a great excuse to drive the car, too. But then I went into the Air Force and was either mostly in Germany or Texas so we were a long way away and I only saw her about once a year or so, but we kept in touch through mail and phone. It hurt that I would not be able to go to her services, but the next day when Cindy was born, the hurt eased.

With all the passing of folks on my patient support site, we have also had what I perceive as an increase in posting of pictures of children and grandchildren, including many new babies, on the cllcfriends site. It helps to balance the hurt and pain and suffering of members. Precious new lives.

Cindy had a very rough time with this pregnancy. She had "morning sickness" throughout the entire pregnancy and not just in the morning. She is the one who previously had two heart surgeries and her heart started messing with her again about half way through. She went into premature labor about two or three months early, but they were able to stop it. The last two weeks before delivery, she had constant contractions that kept going between two minutes and five minutes apart with very little down time. She was hospitalized several times during the pregnancy and had to go to labor and delivery several times in the last couple of weeks only to be sent back home after a couple of hours. The last night she spent the night with us and at 6:30 a.m. I drove her to the hospital after her water broke. They couldn't send her home then. Corbin, her husband, is a driller in the oil fields and he was well over six hours away. He had to drive back from West Texas pulling his huge mobile home trailer behind him. The nurses didn't think he would make it in time, but he arrived a little less than an hour before Gavin was born. Good thing or I might have slapped him around! :)

All those troubles were forgotten once the precious gift from God arrived.
Gavin is advancing at a remarkable rate. At two weeks old he began turning over front to back. He smiles regularly now and it is not just when he has gas, because it is in response to stimuli. He is cutting two bottom teeth. He is only six weeks old, but I think he is starting kindergarten next week.
Karen, a lady who's blog I follow and who is listed over to the right as The Adventures of Cancer Girl, calls her little girl WCK (world's cutest kid). Sorry, Karen, but Gavin has stolen that title.

(By the way, if you have never been to Karen's site, it is well worth the read. She has one of the greatest senses of humor and the most wonderful writing style. When I am feeling down, I always get a smile reading her blog. To give you an idea, a recent entry title is, "Moose drool, wolf pups, bear poop." But if you go there, don't read just that one. One other note before I wrap this up. David E., the fellow with advanced prostate cancer whom I have referenced several times, is now undergoing chemotherapy as his other treatments stopped working. Please keep David and his family in your prayers.)

Well, what kind of grandfather would I be without pictures? Most of these were taken and sent via phone so they aren't the sharpest quality, but you can see how cute he is. So, enjoy!

A couple of hours old:

One day old:

Let me think about it, yep, I'm cute!

I'm in charge and don't forget it:

Brotherly love! Jonathan and Gavin sleeping. (Jonathan is almost 14)

Mother and son bonding:

Taken today

Thursday, July 10, 2008

In Our Hearts Forever

Death
A little word meaning the end of life, but packed with so much more meaning than that. Around that word is packed so much heartache and suffering and, paradoxically, many times celebration.

This year death came to many people I care about and has drastically effected the lives of many others I also care about. With the danger of leaving someone out, I would like to mention a few.

Wanda Daniel was a true friend to our family. For over 40 years she ran a day care center at our former church in San Angelo, Texas. The former pastor of the church, Earl Dunn (another great man of God) had a vision and saw the need for a day care center in that part of town and he went to Wanda to ask her to be the first director. Her daughter, LeeAnn, was one of the first enrolled and graduated from the very first kindergarten class. LeeAnn later became a teacher and then assistant director working beside her mom. Technically she was there forty years too, if you count coming in after school!

Forty years is a long time, but the number of people impacted by Wanda's golden heart is immeasurable. My two girls were enrolled there. The same week my youngest was born, my wife's father - who was dying from cancer - and her youngest brother came to live with us. Our little family went from three to six in one week. By the time Cindy was a month old, it became painfully apparent that Cheryl could no longer be a stay at home mom. I was a young man in the Air Force and that was back in the day before major pay raises brought us even close to the poverty level. San Angelo was a military town and Wanda knew our plight. She didn't charge us initially! Then, when we insisted, she put us on a reduced rate. Finally some time later, after much arguing we got her to agree to the full price. My grandchildren also attended her daycare and when the girls both became single moms and enrolled in college, Wanda put them on a reduced rate too! She did not see it as a job, but as a mission opportunity. The daycare was not a profit making machine! If there was an opening, and the waiting list was always very long, Wanda would not turn you away. The state brought many people into the facility to show prospective new owners the proper way to run a daycare. Although it was licensed by the state, Wanda always resisted accepting government funds of any kind along with all the strings attached.

Unfortunately, as often happens even among Christians who are not acting very Christian-like, a group within the church decided the daycare needed to become profit making to help support the church which was dwindling in member and funds. Wanda strongly resisted as she knew it was a long-running mission and she felt God still had a need for that type of mission work there. Unfortunately that group, with the support of the new pastor, prevailed and Wanda and LeeAnn were fired late last year! Wanda's golden heart was shattered, literally. Her heart was hurting, but she thought it was emotional pain and did not go to the doctor. In February she finally went to the doctor and major damage was discovered. Over the course of several months she had numerous surgeries from which she never fully recovered. Finally she was placed on hospice and then the Lord called her home on June 14, 2008. That golden heart has now been pieced back together and made whole, but she left her friends' and family's hearts hurting.

Ken England, 99, was a wonderful man who attended my Sunday School class with his son Joe and daughter-in-law, Claretta. He died May 22. He served as pastor, associate pastor or interim pastor to churches in Pond Springs, San Gabriel, Jonestown and Round Rock. He also was associational missionary for Atascosa Association and preached revivals throughout Texas, Louisiana and Mississippi. Our church recently named Ken pastor emeritus of First Baptist Church, Round Rock. Ken was a published author and had also written a book of poetry which he honored me by giving me a copy. He lived a full life and was very active until just very recently. His service was a true celebration.

Another man in my class, Cliff Hobbs, just lost his son, David, to a sudden and unexpected heart attack just a couple of weeks ago. He was only 48.

P.C. Vencat and his wife, Chaya, established a website for CLL/SLL patients which evolved into THE most valuable resource out there for those of us struggling with this leukemia and/or lymphoma. Chaya did most of the writing, but P.C. was the patient, webmaster, editor and publisher of the site. I have a link over to the right (http://www.clltopics.org/) and I have referred many, many newly diagnosed folks there. It was one of the first places I found when I was diagnosed and Chaya is able to take a very complicated subject and make it understandable. The section for the newly diagnosed is a life saver. These folks knew the disease. After much study and research P.C. took a chance on the only thing that offers a possible cure and that is a stem cell transplant. Everything was right. He was strong and relatively healthy, they chose the experts to perform the procedure and they had lots of emotional support behind them. Even with all of that, P.C. passed away on June 23rd from complications after an allogenic cord blood stem cell transplant. You can read the details of his transplant journey at Harvey's Journal. Harvey was the "fictionalized" character Chaya wrote about, but Harvey was really P.C. Hundreds and hundreds of lives have been enriched because of this couple.

One of the strongest caretakers I know, out of many strong caretakers, lost her husband to CLL a short time ago. Cindy Stanley's husband Tony, age 52, lost his long running battle on April 28, 2008. He endured so many different treatments, trials (and torture) trying to keep this dragon at bay. He fought a valiant battle and was a true CLL warrior. Cindy was with him every step of the way and kept us informed via http://www.cllcfriends.com/ and http://www.cllforum.com/. She posted less than an hour after he died to tell us. One of the last posts before that included this heartbreaking sentence: The nurse just informed me that they have called all the hospitals in the area and no platelets at any of them. Tony's platelet count at that time was 6 (the normal minimum is 150) and he was bleeding. I don't know if they ever found any at that time, but it does remind me to remind all of you, if you are able, please donate blood and/or platelets whenever you can. You can literally save a life.

Some others who have died from CLL in 2008 with whom I had a connection:

AndyLynn, age 30 and she left behind a husband and a toddler

Cathy's husband, Philip

Val Bollock's husband John who had not been diagnosed very long at all and he left a young son, Will.

Shirley Smythe, from Ireland lost her Mom

Elizabeth's Dad

Lise Rasmussen-Wright who was a long-time battler of this disease and a friend to many.

Bonnie, who has CLL, lost her son, Jordan McKay Washburn, May 10th to a rare blood disease, metastatic alveolar rhabdomyosarcoma, which mimics acute leukemia. It is considered a pediatric cancer but he became ill late last year. He had just turned 26.

Each of these folks was loved. Each made a difference. Each one will be missed. Each will be remembered.