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.


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!