The "New Normal"

I said it to myself again today. “I wish I could feel normal again.” In reality, I have said that, or a variation of that phrase, many times throughout my life. When I was 12 years old, I had a severe case of infectious mononucleosis. In fact my doctor said he had never heard of anyone with a white cell count that high. My spleen was swollen and the lymph nodes around my neck and chin were huge. Anyone with CLL or some of the other blood cancers knows those are some of the same symptoms of those diseases. In fact, shortly before my CLL / SLL diagnosis I had been noticing the swollen neck nodes and the thought had briefly occurred to me that perhaps I had Mono again.

When I was 12, I was ill for nearly nine months, including throughout the entire summer months. Through my open windows the sounds of summer flooded my room and the summer breezes played with my bedroom window curtains. I could hear other kids laughing, playing and having a good time, but I couldn’t go outside and participate in the joys of summer. Sometimes I didn’t know if I had the strength to make the round trip from my bed to the bathroom right next to my bedroom. Later in the summer I spent a few days over at my older brother, Jim’s house. My sister-in-law, Barb, is a registered nurse and mom felt comfortable putting me in her hands. Barb placed a chair outside and I would sit in the sun and enjoy the warm, healing rays of the sun on my face. I would dream of going fishing in the creek not far from there and I just wanted to feel normal again. That next school year I missed over 90 days of school. I had work brought home to me and did school work in bed. When I started going back to school I remember some days feeling like I could barely make it through the day and I wanted to feel normal, like the other kids. Slowly I started getting stronger, but my doctor still didn’t want me taking part in gym class (PE). I think it was because of the spleen, but I am not sure. Then, when I was 14, I got Mono again! In fact, I got it again at 16, 18, 20, and around 22 when I was in the Air Force. Each time was not as severe as the time before and I didn’t feel as ill. I remember telling the AF doctor that I had Mono. He asked why I thought that and I told him how often I had been ill with it. He told me it was impossible as you could only get it one time. At my insistence he tested me and, yep, I had a mild case again. That was not the last time I had a doctor who was wrong. Through those teen and early 20 years, I had several other health problems and I remember the times when I was feeling down and wondering what it would be like to feel normal again.

But then, starting in my mid 20’s, I was really well for about twenty years! I WAS normal – well, health-wise, anyway. But, I don’t remember feeling grateful for feeling normal again. I took it for granted. Is that normal? So many times I had lamented not feeling well and there I was doing great and not rejoicing and savoring it. Perhaps I was just too busy living life, I don’t know. Oh, there was a lot I was savoring and rejoicing over. I marveled at the birth of our girls, basked in the love of our little family unit, and gloried in the beauty of God’s world as we lived in Germany and traveled throughout Europe from the Netherlands to Belgium to Austria to Switzerland to Italy. For part of the years we lived in Europe I worked on top of a mountain and never tired of the wonderful scenery that greeted me every day. I liked my job and felt I was truly making a difference. But, I don’t remember marveling at how well I felt during those years.

On the day of my 40th birthday, we discovered a heart problem. I remember joking that day with either the nurse or the doctor that I should have taken out the extended warranty on my body when I was a kid. If you do that on a car, it rarely breaks down, but if you don’t, it breaks down right after the regular warranty runs out. I spent months of being told not to climb steps unnecessarily and not to run for physical exercise. That also meant I had to walk for the military physical fitness tests. But instead of running a mile, I had to walk three miles in a certain amount of time, and it was a very brisk pace. I actually found it harder than running. Again, I was wondering what it would be like to feel normal again and wondering if I would. Well after about a year of trying different medications and different combinations of medicines the problem was pretty much under control. If I ever forgot to take the meds, I knew it within a few hours. Of course, like many meds they had their own side effects. But for the most part, I was feeling well again and I went back to taking life for granted.

About the time I retired from the Air Force, I started having trouble with my feet and legs hurting. Special inserts in the shoes and steroid shots in my heel helped but I still had some trouble walking without pain. Of course I started grumbling again, but even so I did feel well for the most part.

And then five years ago the big bombs started falling. First came the diagnosis of diabetes in April of 2004, then a bad traffic accident in August of 2004 with a resulting injured back, and then the CLL/SLL in March/April of 2005. Those were the head-spinning, emotional rollercoaster ride days. You can read all about that time in my life in the first several posts I made to this blog in November of 2005.

One word of counsel and encouragement that is often given on our support sites to folks newly diagnosed with this CLL is that even though it is difficult emotionally to come to terms with the diagnosis that eventually things will settle down. Yes, your life has changed forever, but you will eventually settle down into your “new normal.” The only problem I see is that we still occasionally mourn the loss of our old normal. At least I do.

So, what is this “new normal?” What does it mean? Actually it varies from person to person. Because just as this leukemia and/or lymphoma affects people very differently, the “new normal” depends on the impact the disease has on one’s life. For some it is many years of “watch and wait.” Watching the disease and waiting for it to progress. Many call it watch and worry. For some very fortunate folks it never does progress. For some folks I have known, the disease was so progressed at time of diagnosis that they had to start treatment immediately. Some who have done that were fortunate to go into a remission and go into a period of watch and wait for many years, but knowing always the day would come when the remission would be over.

I had eight rounds of treatment beginning a little less than a year after I was diagnosed. Although I didn’t reach remission, I have been in the Watch and Wait mode for almost three years now. Here are some of the things I see as now being normal for me:
* Doctor visits are a routine and regular part of my life
* Blood test results are extremely important and tell me how I “really” am doing, even though they only tell a small part of the story
* X-rays, other types of scans, and bone marrow biopsies to see what is going on inside because how I look on the outside has no bearing on what is really happening. People tell me all the time how well I look or say, “but you don’t look sick.”
* Feeling that slight rise in tension before monthly blood tests and doctor appointments when I know things are progressing but not knowing how much
* Fatigue! Needing naps during the day, often within an hour or two of waking up in the morning
* No stamina for doing any physical labor
* Constantly looking for any sign of infection
* Wondering if every new twinge, lump, pain, or hangnail has something to do with the cancer growing
* Obsessing over newly swollen nodes and wondering about their true meaning
* Watching for signs of illness in other people so I can avoid them
* Changing checkout lanes in the store if someone is coughing in line
* After church services remembering to wash my hands after shaking hands with lots of people who may have germs that wouldn’t harm someone with a normal immune system
* Knowing more chemotherapy is definitely in my future, but not knowing when
* Deciding what will be the best treatment when it is time to treat
* Thinking and praying about bone marrow/stem cell transplant and wondering if that is the way to go
* Being hesitant to commit to anything long term, not knowing if my health would allow it
* Sitting all day in the infusion chair every few weeks getting a boost to my immune system through the generous blood donations of thousands of other people (IVIg treatments)
* Wondering if all the huge weight gain is due to steroids and swelling internal lymph nodes or if it is just from overeating and sitting on my butt most of the day. Hmm, guess I probably know the main reason.
* "Chemo-brain" - having terrible short term memory (I came back and added this one several hours after I published this post!)
* Wondering why I keep getting this stupid itching on my legs that tries to make a comeback every few months. Sometimes explainable, most times not.
* Having great plans for everything I think I will accomplish tomorrow and then the reality of rarely even coming close to accomplishing it all
* Watching other people, whom I have felt close to through my Internet support sites, lose their battle with this disease and feeling the tremendous sense of sadness and loss
* Meeting so many wonderful, brave folks on those same support sites
* Learning to trust God more and learning over and over how to just put it all in His hands. Like a verse I studied last week when a father of a young boy came to Jesus for help, "I do believe; help me overcome my unbelief!" In other words, I do believe, but I know I don’t have total perfect faith and I have some doubts I must overcome with His help.

So, when I said today, “I wish I could feel normal again,” I am already feeling normal. Normal for me. Normal for right now. This is my new normal. Someday I may wish I had THIS normal back.

So, for all those folks who shake their heads and say about me, “He’s just not normal.” Yes I am!!

He is Risen! He is Risen Indeed!

"He is risen! He is risen indeed!" With those words early Christians greeted each other. Only seven words, but with such depth of meaning. If those words were not true there would be no reason to be a Christian. If those words were not true, then Christ would have stayed in the tomb and death would not have been defeated. Do I fully understand everything behind those words? Not really. Do I believe those words? Absolutely. How can one fully comprehend that God became flesh and lived among us? That at the same time He was fully human and fully God? That He who was perfect and without sin loved us so much, even when we were His enemy, that He took upon Himself all of our sin and paid the full price for our redemption? All we have to do is trust and believe it is true. Out of that great love for me and for you, He died for us and then defeated death and rose from the grave. Because I believe that and have put my trust in Him, I am fully confident that when I die I will immediately be with Him in heaven. There is nothing I can do to earn that passage. I can't be good enough. I can't buy my way. I can't force my way. There is only one thing I can do. I just have to trust and believe in the resurrected Christ, the Lord of my life. I am saved! I am being saved! I will be saved!

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." John 3:16 (NIV)

I hope you all had a wonderful Easter.

Husbands Say The Darndest Things

In the class I teach on Sunday mornings, we just completed a wonderful, many-month study of Psalms and Proverbs. Two weeks ago we had a discussion about the foolish, purposefully hurtful things we say or even outright lies we sometimes tell and then we try and cover it up by saying, “Only kidding.” This led to talking about the hurtful things we sometimes say but we didn't actually intend them to be hurtful. We say them without malice, but also without thinking and yet those foolish comments can still have long term consequences.

Occasionally … well, actually often … I get myself in trouble by making comments that I mean to be funny, but because I don’t think them through, actually come out as hurtful. Saying, “Only kidding,” even though I was, doesn't help in those situations either.

I related the following true story to my class.

Thirty five years ago, Cheryl and I were a young couple with two small children, only married six years. I was in the military and not making much money. We did a lot of our clothes shopping at yard sales on Saturday mornings, but on occasion we were able to splurge and buy something new. On one of those times Cheryl got a new dress which she wore to church for the first time. It was a very, very bright yellow with black stripes. It really did look nice on her.

After the worship service she went down to the nursery to get the kids while I was delayed talking to some folks. When I came out of the sanctuary, I saw her down at the end of the hallway that ran the length of the church. She was standing by the door talking to someone else and she had the girls with her.

When I got to her, she said, “Oh, good. I didn't know if you knew I was down here, I was worried you wouldn't find me.”

I said, with a smile on my face, “No need to worry. I saw you from all the way at the other end of the hallway. Couldn't miss you. You look like a big ol' bumblebee in your new dress.”

OOPS!

She never wore that dress again!

Fortunately she started talking to me again last week.

Happy Canciversary To Me

I am celebrating my fourth anniversary since diagnosis with CLL/SLL. Now to some folks it may seem strange I would celebrate my Canciversary. However I think every year we survive and can note the date is reason for celebrating. Actually looking forward to celebrating my 20th Canciversary as my Dad did before he died as a result of CLL (and a very bad heart).

To celebrate this anniversary, I have updated the look of my blog. However, in doing so, I lost some links to blogs I was following. Sure hope I can find them again. However, I have added a few new ones I have been reading, but did not have on my list here. You can find them over on the left.

Looking back over the last four years, much has happened since that day in March when Cheryl and I, hand in hand, walked out of Dr. Netaji's office with the confirmed diagnosis. It was a bright sunny day, much like it was here all last week and our heads were spinning, even though we had suspected what the final word would be. It wasn't quite the same suspecting it as actually hearing it. I remember feeling slightly surprised that the world was just going on as normal when ours had been changed forever. I guess I was expecting to walk out to dark storm clouds, flashing lightning and all traffic and movement stopped. That's what it seemed like in my mind. However, that darkness lifted after that first night of prayer. Not to say that the head spinning didn't keep going for a few months as we continued to learn more about the disease.

So what has happened in the last four years?

--I have felt the presence of the Lord with me during this journey
--I experienced the wonderful support and encouragement of family and friends, including friends I hadn't heard from for many years
--I have experienced the power of prayer and intercessory prayer that I had only heard about previously
--I have made many new cyber friends who are surviving CLL and other cancers
--Some of these cyber friends I have since met in person and without exception they were all exceptional people; Dave E, Deb and her mom, Paul, Anita, Tom and JL
--Unfortunately I have lost way too many cyber friends to this disease over these four years; too many and too sad to post all their names, but each had a unique story of courage
--I have had three bone marrow biopsies *** YIKES***
--Numerous infections including lots of sinus infections, teeth, pneumonia several times, E. coli infection in lungs, strange rashes and itching, and other stuff I may have tried to forget
--I have seen my primary care doctor, endocrinologist, hematologist/oncologist, CLL specialist, cardiologist, neurologist, pulmonologist, surgeon, dentist, oral surgeon, endotontist, optometrist and perhaps others
--Chemo port implanted in my chest
--Extensive dental surgery
--Eight rounds of chemotherapy with mustard gas derivative alkylating agent, mouse parts and lots of high dose Prednisone
--Sixteen (I think) day-long IVIg infusions with steroids
--Discovered I have some of the best insurance coverage around for which I am very thankful
--Many steroid induced sleepless nights
--Way too many steroids. Just thinking about it may put me into roid rage :-)
--Bucket list trips to the Grand Canyon and an ocean cruise to Progresso and Cozumel, Mexico; thanks to my daughters!
--I retired from a job I really liked (I have liked all but one of my jobs in my whole working life)
--I was approved for Social Security Disability
--I got handicap plates on my car
--My back continues to deteriorate
--Have gained sixty pounds now since starting chemo a little over three years ago

--Five wonderful annual "John's Not Dead Yet" luncheons with former coworkers from probation training (Well they call it "The Friends of John" luncheon, but I know the truth! LOL!)
--Fishing with my grandsons
--Movie dates with my granddaughter
--Babysitting my youngest grandson
--Middle school grandson living with us during school year (and behaving VERY well now at home and at school)

--Cheryl has survived multiple lay-offs at her work in the housing construction industry. She was told after the last round that they could never afford to lose her when she tried to volunteer to take the place of a young man with small children who was laid off
--Being a house husband but one who HATES to dust for some reason; cooking, laundry, vacuuming no problem but always run out of steam when it comes time to dust (blog post for that solution coming soon - written in my head weeks ago)

I'm sure as soon as I post this I will think of other things, but it is 2:00 a.m. and after day long IVIg infusion today, the old mind isn't too sharp. Of course it isn't all that sharp at 2 p.m., either. I will probably still be awake when Cheryl gets up for work because the steroid infusion that goes along with the IVIg always has me wired all night.

Speaking of the infusion, it was an unusual day in the chemo room. In the main area where I sit, always next to the window, there are six infusion chairs - three on each side of the room. It was a little unusual in the fact that there was a lady who was there when I came in and who was still there when I left. Usually I am the first one to arrive and the last to leave. Secondly, in the remaining four chairs, thirteen people came and went during the day. All but one were women. All were in relapse from their cancer. Two were undergoing chemo and radiation. One had radiation burns after 32 rounds of radiation. All but three of the ladies were bald and each had a wonderful hat, colorful turbin or beautiful scarf wrapped around her head. One lady was in terrible pain. One lady was very sick to her stomach. One lady's treatment isn't working and the tumor is inoperable. One lady's son surprised her last week when he showed up on her doorstep from Japan. He is in the Army and was coming back to the states for a short trip to another state for the military. He is a helicopter gunner and was in Afghanistan and will be going back after his tour in Japan. She cried. All seemed optimistic. I prayed for all of them.

I got home at five.

I just prayed for them again.

This and That

And so we begin another year with new hopes and new adventures in a future we can't see. Sometimes that is a very good thing. Will 2009 bring more rounds of chemo for me? If it does, I won't be too surprised. Of course I will be thrilled if I get through another year without more chemotherapy, which certainly could happen. I am already much further ahead than my doctors or I thought and we thank God for that. Cheryl and I went to Houston for another appointment at MD Anderson this past Monday. It had only been four months since my last time there and I was a little shocked with the blood work results. My IgG level was WAY up at 973 and it has been a month since my last infusion. A couple of months ago it was down to 220 four weeks after an infusion, so this is terrific. Dr. Wierda said to skip this month's infusion scheduled for this coming Monday...yea. Now I have to convince my local doctor to go along with that, which I think he will. Once we started these infusions to stop all the infections, the idea was to get the IgG level to over 700 and infuse whenever it drops below 700. I know doctor Hamblin had said that studies showed that the infusions were helpful only when the level was below 300 and the patient had been getting infections, but except for the E. Coli infection in my lungs I had this year, the constant infections have halted, so it is working for me.

Another bright spot, my platelets are continuing to be up very near the normal range. This time at 128...double yea. Normal is 140 to 440. On the not so positive side, my absolute lymphocyte count almost doubled in four months. If that count doubles in six months or less, that is an indication for treatment. However, no decision is made on just one test and the number is still relatively low for someone with CLL so this jump isn't as critical as it might be if the number was higher. However, if it doubles again next time, that very well could be a trigger. That count is 16.24, up from 8.23 four months ago and 6.08 eight months ago. Normal for their lab is 1.00 to 4.80. My white count is up to 19.1 from 12.1 four months ago and 7.6 eight months ago. 4.0 to 11.0 is normal for that lab. Overall 16 things were out of normal range, either too high or too low, of the 45 things they tested for. In the overall scheme of things, not bad. Because I get my blood work monthly here at home, the climb didn't seem quite so dramatic. Except for lack of energy and my bad back, I have been feeling good. I was feeling worse a year ago when my counts were better!

When Dr. Wierda said to come back in four months, I gave him my sad puppy-dog-eyes-look and stuck out my lower lip. Then he said, "OK, come back in six months." First he had confirmed that I see my local doctor for blood work once a month so he knows I am closely monitored.

While still on the topic of health, please keep David E. in your prayers. He is my Internet friend who has the advanced prostate cancer. He has his final rounds of chemo coming up and it is barely keeping the cancer at bay. After he has his final round on the 15th, he, his wife, and his doctor are going to have to decide what the next steps will be. He has a strong faith but of course this is very worrisome. This month he also enters his fifth year since his diagnosis. He was diagnosed just shortly before I was.

We had our usual exciting New Year's Eve last night. Cheryl went to bed early and I watched the ball drop in Time's Square on TV -- twice. They replayed it for our time zone. I had every intention of going to a party/open house a former co-worker was having, but Cheryl had gone in to work at 4:30 a.m. and was too tired to go. By the time evening comes around, I have zero energy, too.

I spent much of the evening comforting my shaking dog. Fireworks send him into panic mode and we have lots of illegal fireworks going off in our neighborhood starting at dark. At 1 a.m., after it was pretty much over, I tried to take him for a walk before we went to bed. I had to force him out the door. We barely got down our walk and one went off in the distance and he tried to run back. I made him go down the block with me, but his tail was always between his legs and he wouldn't get off the sidewalk. Then we came home and I forced him into the back yard. Still no luck. When we got up this morning I took him out on the leash. At first he still refused to go out, but finally realized there were no more big bad booms. I sure am glad I only got him for companionship and not for protection.

It Pays to Advertise

I hope you had a wonderful Christmas. Christmas is my favorite time of year as we celebrate the most wonderful gift ever given to mankind -- the birth of Jesus Christ. We celebrated twice this year. First with Cindy, Jonathan and Gavin. Corbin, her husband who is an oil driller, was called back into the oil fields two weeks before Christmas. He is in New Mexico and Cindy and the boys flew out to be with him for Christmas. So we exchanged gifts the Sunday before she left. It was such fun watching Gavin open presents. He had fun ripping paper and playing with boxes. He did very well for being only six months old. Here are a couple of the pictures they gave us for Christmas. We actually got a bunch of poses, but I will only post these. I don't want to brag too much on my wonderful grand kids:



Because the desktop computer is about useless and that is the one Cheryl uses mostly, they decided to give Cheryl a laptop, fix that desktop for the grand kids to use, and also got a docking station with a switch so she can still use it in the computer room with her mouse, keyboard, and monitor. She will password protect it so the grand kids can't mess it up. They included a 24 inch monitor, but it doesn't fit on her computer roll-top desk. We haven't quite figured out what we will do with that, yet. Now true, I didn't get my dream desktop, but the actual problem was solved. Hmm, maybe I will buy myself a desktop with blueray player and use the 24 inch monitor. I will have to save my pennies first.

They got me a fantastic, new digital camera. It is a Canon, but even better than the one I had been hinting for, well blatantly writing about. It is a good one! I started taking pictures before reading directions and at first I was disappointed with the results. Then I learned I was doing it all wrong. I am just now figuring it out and it takes TERRIFIC pictures. It has tons of different settings. I use auto setting if I want to make sure I get the picture. I know I will get better with it. Here are a couple of my first attempts that I didn't delete (some were much, much worse) and then one taken later:


On Christmas eve we attended the candlelight service at church as we always do. The service ends with the flame from the Christ Candle being passed throughout the congregation to small candles each of us are holding. It is so neat to watch the flame being passed until the entire sanctuary is aglow from over 900 candles burning. Very impressive and moving. A we pass the love of Christ from one to another, the results are also very impressive.

Then we came home and had our first annual, non-traditional, pizza dinner with Cheri, Marc, Holly and Jimmy.
Usually we have a regular Christmas dinner of turkey or ham on Christmas eve. However, this year Cheryl was turkeyed out from Thanksgiving and then our SS department party at our house where we also fixed a large turkey. She isn't that fond of ham, so we decided to do this. Of course the kids loved it. After dinner I read the Christmas story as I traditionally do each year and the kids opened one gift.

Cheri, Marc, and kids decided to spend the night so they went back and got their dog and brought her here.

In the morning we got up fairly early and started opening gifts. Guess what I got from Cheri and Marc? A Garmin Nuvi GPS - and it speaks street names, just like I wrote about. Now where did they get that idea? HA! We used it to go to MD Anderson and it actually took us on a much faster route in Houston than MapQuest always had us go. And coming back out it was slightly different but still much faster. It was great! We even found a short cut leaving the Austin area that cut out two miles. We still haven't figured out a name for the female voice we are using, but we will. The one we used in New York we named Thelma, so perhaps Louise is appropriate for this one. If I want, I can even have it speak Russian and have all the text in Cyrillic! (I was a Russian linguist in the Air Force.) Of course I would have to call the Russian lady's voice Svetlana, Tatyana or maybe Natasha. No matter what name I use, I can now find my way home from church and don't have to wear the sign around my neck Cindy got me last Christmas. That sign said, "If found, please return me to..." and my address and phone number.

Everyone got wonderful gifts. The kids each got a laptop, too! Black Friday specials from their Mom and Dad. After gift opening we fixed breakfast of bacon, eggs, toast, and cinnamon buns. It was great. Marc then drove to another town and picked up his other daughter and brought her back here. In the afternoon, we had our first annual non-traditional grilled steak dinner. Normally we have left overs from the night before, but that wasn't going to work this year. So, I grilled steak, we had fries and a traditional fruit salad -- can't throw out all the traditions.

It was a wonderful day!

Oh, I also got my eyes examined and picked up my new glasses this week. So, I got most everything I had posted about under the post "I'm a Gadget Guy." It really does pay to advertise. Now, if I can just convince Cheryl I really do need a flat screen High Definition TV! HA!

41 Years!
On December 23rd we celebrated our 41st Wedding Anniversary. Where does the time go? We actually went out to dinner that evening which doesn't often happen. Usually we are so busy getting ready for Christmas, we are too tired. This year, we were ready the earliest ever. Cheryl said this was the least stressful Christmas she can remember in years and years. I think this picture says it all:

Where Is My Energy?

I think the most frustrating thing about CLL is the fatigue and lack of energy. I have big plans for the day of all the things I am going to accomplish and then little actually happens. Now true, sometimes it is just lack of motivation. But many times I just get started and sputter out. Case in point, it took several weeks to decorate the outside for Christmas and that was even with Jimmy and Jonathan's help. They got up on the ladder for me for the roof lights except for the two tall peaks. That height scared both of them too much so I did that part. I could barely make it up the ladder and that really depressed me. I used to do it all with no problem. Last year I did the front and Jonathan did the side when I tired out. This year I could barely make it up the ladder the second time and I really doubt I could have made it a third time. Grrr!

Later that week, as I was putting rope lights down to outline the sections of the yard, my back was hurting too much with the constant bending putting in the stakes, so I got down and crawled around doing it. Then when it came time to get up, I didn't have the strength and I was outside by myself. I had to crawl over to a tree to help pull myself up. Of course every time a car came down the street I stopped crawling and pretended I was doing something right there.

I was trying to get things done for the annual Sunday School Christmas party we host at our home. I had a lot done but still didn't have the lights around the garage and the three evergreen trees. But I had a week left to do it. Everyday I planned on going out and didn't. Finally on the Saturday of the party I was out there and finished up about 3:30. I didn't even have all the lights out I normally do. Oh well, it still looked nice. Next year I might just put electric candles in the windows. If I can find the energy. And the extension cords.

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.

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.

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:

http://www.active.com/donate/ltnAustin/2338_jtw890

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.

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!

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.

My Last Hurrah

Last week I taught my final class before retirement. In the very early 70’s, when I completed my first overseas tour of duty, the military sent me to Goodfellow AFB in San Angelo, Texas, and, after I arrived, told me I was going to be an instructor. I panicked. No way! I was extremely shy in groups. I was fine one-on-one, but gather several people together whom I didn’t know, or know well, and I didn’t say a word. When the military says you will do something, that’s it, you will do it.

They sent me to a six-week instructor school where I eventually became fairly comfortable presenting in front of my nine fellow students. In addition to numerous short talks, we had to give a 50 minute presentation every Friday. I remember walking up and down the driveway of our rented home practicing my presentations. I graduated from the school on a Friday and taught my first real class the next Monday at 6 a.m. Because we didn’t get our final diploma until we were evaluated by the instructor from our instructor school, he came to my first class. My supervisor and his supervisor also showed up. Not only that, the Standardization and Evaluation Team, consisting of four people, happened to randomly pick my classroom that day to visit and evaluate. There I was, scared to death with 36 students whom I had never met, and an entire back row of people who were there to evaluate me. Back then we wore white smocks to protect our uniform from chalk dust. I was shaking so badly that I had to have someone else button the smock for me. The lesson was a 50 minute lecture on Soviet aircraft fighter tactics. My mouth was like paste. I felt like I was shaking as if I had epilepsy. I don’t remember seeing anything but a blur in front of me. Every evaluator said I had excellent eye contact with the students. Huh? I really didn’t want to continue doing that. It was going to be a long three or four years.

However, gradually over a fairly short period of time a strange thing began to happen. I started to enjoy it. I really liked it when I saw the light of understanding coming on in the eyes of my students. I was helping them learn and I was making a difference. Wow! Our school at Goodfellow AFB had classes going 24 hours a day and we rotated our shifts so everyone had to work days, evenings and the midnight shift at some point. Now, to keep student’s attention at two or three o’clock in the morning takes some work and you learn quickly how to be upbeat and creative.

When I first joined the Air Force, it was because the draft was breathing down my neck and I really didn’t want to be in the Army sloshing around the jungles of Viet Nam. My idea was to go in, do my four years and try to get out in one piece. But now, here I was enjoying my job -- not only overseas working as a Russian linguist, but now teaching others how to do the job. I also realized it was an important mission and I really was serving my country as I knew the Soviet Union at that time was a much larger threat to our security than was Viet Nam. Because of that and some other things going on within the family, I ended up reenlisting and spent a total of 24 years in the service. I was stationed at Goodfellow a total of four times and I retired as a Chief Master Sergeant (E9) and my last assignment was at Goodfellow AFB as the Superintendent of the East European Linguist Training Division. I had trainers from all four branches of the service under me with over 300 students in class at any given time.

From the early 70’s on I was involved in training in some capacity for all but a one year period and even then, I still taught Sunday School classes to adults (but that is quite a different style from any of the other training I have done). I trained in the military; as a probation officer I was the local department’s training officer (as an additional duty); I trained probation officers within the Texas Department of Criminal Justice; and now am finishing up as a trainer with the Texas Department of State Health Services training risk reduction specialists and other staff within community-based organizations and county health departments who work in the area of HIV/AIDS, Hepatitis, and STDs.

And so, 36 years of being a paid trainer came to an end this past week with my last class. I was really hoping it would be a good class to finish with. I have only had two “classes from Hell” – one when I taught probation officers and one when I was teaching with the Health Department. Both were supervisor courses. But each class has its own personality and some are better than others. My next to last class in June was pretty flat. It was a counseling course and they were just a very quiet group and the energy level was low. The folks were fine individually, but they just didn’t want to participate in discussion during class. It seemed like a long week. I figured it was God just telling me it was OK to leave and I wouldn’t miss it very much.

I literally prayed that this last class would be a good, positive experience to finish my career. It didn’t start well. The hotel was one of the poorer ones I have stayed in for business. Very small, old and not kept up well. The automated telephone wake-up call came over an hour early so I relied on the clock-radio alarm. Somehow the radio station from the night before disappeared and it wasn’t on a station so I overslept. I wasn’t late, but it was still a very rushed morning trying to prepare. I said, “OK Lord, I get the message that it is time to retire, but please help the class to be a good one.”

I put a lot of effort into that first day to keep the energy level high and they responded fantastically. The class was wonderful!!! I could not have asked for a better group of people. The participants were engaged, talkative, funny, and supportive. They put full effort into the learning experience. At the end of the course they each give a ten minute presentation and they did a wonderful job. Sadly, one fellow was not able to complete the class as his father was taken to the hospital the last morning and he left to be with him. My back was hurting quite a bit during class and I tried sitting down some (the back doctor has told me not to be on my feet for more than ten minutes at a time), but I just couldn’t stay seated. First, that always seems unnatural to me and second I could feel the energy level start to slip and I didn’t want that to happen. I figured I would pay for it this weekend. But I have been fine! I am usually running on adrenaline in the classroom and then when I get back to my room in the evening, I collapse. This time was no exception. However, that sure beats collapsing in the classroom. It is never good when the instructor starts snoring in class.

The course I was training was Presentation and Facilitation Skills. One of our other instructors, Mary McIntosh, went with me to learn the course. It is one I had written several years ago, but only I have ever trained it. How appropriate to finish my career helping others to better talk to groups and present material to classes. I know I will miss it but I also know I am OK with my decision and it is the right one. I am just so grateful to God and to each member of the class that this last time was a positive experience.

Now, I have to go into the office this next week and start sorting papers and cleaning off my desk and cubicle shelves. Anyone have a shovel I can borrow?

Dr. Appointment & Some Silliness

Well, I waited to post the results of this month’s doctor visit until I had all the reports back. Actually it is all pretty good news. There was hardly any change at all in the regular blood tests. Platelet level slipped a little to 103, but surprisingly, the red cell count came up right next to normal. I am not considered anemic. Both Cheryl and I thought for sure that had plunged, just because of how extraordinarily tired I have been. My IGG actually went up a little, although it is still low. My onc decided to hold off again on IVIG because I have not had an infection and he is having a little trouble getting it. (That is the $10,000 a month treatment.) What I really wanted to know was the cause of my fatigue. As most of you know, I have been struggling with that since almost the beginning, but it has been getting worse again. He asked us a bunch of questions. My wife told him I will sometimes fall asleep in the middle of a conversation. I didn’t know I did thzzzzzzzzzzzzzzzzzzzz

Oh, sorry, anyway, he said it could just be the underlying CLL, or it might even be a combination of all the different medications I take, but he also wanted to check my testosterone levels. He told us about one of his patients who had low levels and he was placed on the testosterone patch and he was like a new person. So, at my Monday appointment, I had more blood drawn. Of course, I then did some research on the Web. Although I did find fatigue associated with low levels, it was barely mentioned in most places I looked, but a LOT of other things going on with me did fit. Apparently low levels can be as a result of chemotherapy, and, it can result in loss of strength and muscle tone (yep and yep) and lead to osteoporosis – I already have that. Well, as I was beginning to suspect, my levels are low. I had a message on my phone from the doctor’s office. The message said I should contact my primary care doctor to get on the testosterone replacement patch. Wow, I pray this is an answer. Now, do you think I might start growing hair on the top of my head? Watch, instead I will have to braid long nose and ear hairs. It will start growing everywhere except my head. Ooo, yuck, sorry. Of course, we also aren’t planning to do chemo any time soon. Remember, when I finished up eight rounds last summer, my onc said we were stopping for three months, but we might get six months out of it. Hmm, I am now in my 11th month! I guess God’s timetable is a little different from my oncologist’s timetable.

I leave Sunday afternoon to go to Dallas to conduct a five day training. This will be the last time I conduct this course and I only have one more class to teach before I retire. Strange feeling after 37 years of working as a trainer. Now, if I can just keep from falling asleep when I am in front of the class. Snoring on the part of the instructor always detracts from the presentation.

Now for the “silly break.” I am in charge of the coffee fund for two work sections at the state health department. Yesterday one of the coffee machines died. Here is the announcement I wrote for our coffee fund members:

IN MEMORIUM

February 14, 2007 – June 13, 2007

Sadly, at 8:17 on June 13, 2007, Mr. Black A. Decker expired. Foul play, though initially suspected, was quickly ruled out. Doctors say the cause of death was overwork, an oddity at his place of employment. Although surrounded by health care workers, all efforts to revive him were for naught. Mr. Decker, placed into service on February 14, 2007 and recruited from Wal-Mart, was extremely young for his breed, having lived and served only three months, 29 days. Normal life expectancy for one in his circumstances averages over one year. Autopsy results revealed a lot of rough living in his short life. He was scarred, pitted and unkempt. His internal plumbing showed evidence of hard living and hard water. Although he was listed as an organ donor, only his pot was saved. Viewing was held in room 1004 on June 13, 2007, during normal work hours. He was placed in a custom made box from the Original Manufacturer and placed in a temporary holding can.

Mourning turned to anger when word got out that his demise resulted in July NOT being a free month for fund participants. All respect was lost and Mr. Decker was relegated to the trash heap at the end of the day. An anonymous source remarked, “So much for loyalty and compassion!”

Mr. Decker is survived by his older friend and work companion, Mr. Proctor Silex, who works in the decaf department. Black’s position was quickly filled by a distant cousin of Mr. Silex, also named Proctor Silex, who ironically is black. He was quickly recruited from the local grocery store. The new Mr. Silex is more beautiful than his older cousin and he is equipped with more, though rarely used, options. Mr. Silex’s current caretaker, Mr. J. Wagner who is himself soon retiring (but not expiring) from state service, said, “Long live Proctor. My wish is that he is treated with the dignity and respect he deserves. My dream is that if I should return for a visit even two years from now that I would find Proctor healthy and continuing to dispense liquid caffeine for future state workers. Lord knows they need something to keep them awake and working.” Mr. Wagner arranged a three gun salute as a final tribute to Mr. Decker. “These guys were happy to do it,” said Wagner. “Of course it didn’t hurt that I was able to convince them it was also duck hunting season.”