John's Chronic Lymphocytic Leukemia (CLL) Journey

Light The Night Walk - Austin - October 24, 2009

2009-10-06T04:05:00.000-05:00

I am such a procrastinator! For years I was going to join Procrastinators Anonymous, but I kept putting it off. Finally got around to finding out where the meetings are but I haven't been because they keep postponing them. I think the last meeting was about ten years ago.

It is almost time for the annual Leukemia and Lymphoma Society's Light the Night fundraiser. This will be my fifth year to raise funds and participate. But, it is less than three weeks away and I haven't raised a penny yet. It is not like I didn't know about it because I am on one of the committees. How sad is that? I even participated in the kickoff in July and was on a discussion group to give tips on fundraising. Even sadder, huh? I think I might have told them to start early...sigh.

So how do I try to redeem myself? Well, tomorrow I am sending out emails to all my family and friends begging, er, asking for support. I am also posting here and asking anyone who isn't already supporting someone in their effort to support me. It is really easy to do online using a credit card and you will get an instant receipt for tax purposes. Just go to my page: http://pages.lightthenight.org/ctx/AustinL09/jtw890 then look over to the right where it says "Make a Donation" and follow the directions after selecting an amount and pushing the red "Donate Now" button. If you will be seeing me in person, I can take a check made out to the Leukemia and Lymphoma Society, or you can mail it to my home address. I know these are horrible financial times and there are all kinds of worthy efforts, but if you could possibly support me with even a small donation I would be grateful. The five, ten, and twenty dollar donations do add up. If you can't afford that, I do understand and would appreciate your prayer support if you are so inclined.

So why do I do this? This will be my fifth year doing the walk because I believe the LLS does some good work. They give lots of money to research and were a huge contributor to the research that led to the new Gleevec drug which has been a life saver for people with CML (another type of leukemia). They also do a lot for patient education and give some financial assistance to patients also. I have benefitted in several ways from the work they do. Too many children and adults die every year from blood cancers and I want to have a small part in trying to find a cure.

A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team

The walk will be October 24 by the grounds of the Dell Children's Medical Center at the old Robert Mueller airport in Austin. If anyone would like to join me on the walk, you are welcome to come, just let me know.

In the meantime, visit my fundraising page,
http://pages.lightthenight.org/ctx/AustinL09/jtw890
and read a little bit more information about me and the walk, and if possible, make a donation. Thanks!

Last year on the walk.

Red balloons are supporters, white balloons are for survivors and gold balloons are in memory of a loved one:

Team Wagner:

The starting line:

Strange Disease

2009-10-06T03:01:00.000-05:00

It is the middle of the night, but yesterday was my IVIg day and the steroids never let me sleep. I thought I better post to my blog before some folks get upset with me again. It has been a difficult couple of weeks. I last wrote about the stomach virus and it seemed like it was almost gone when I posted. But it wasn't. It kept making a comeback. By Saturday I thought it was finally over and then Sunday morning about 1:30 a.m. it made a huge comeback. During the night I felt worse and worse. And I started running fever along with the stomach stuff. I was scheduled to give the prayer before the morning sermon in church that morning and I also teach a class. I knew I was in no shape to go but I was also upset because it was too late to get a substitute who would have time to study for the class. I waited until a respectable hour to call the pastor to tell him I would not be praying in the worship service. He said that was no problem and he would get someone else to fill in. I knew that could be taken care of easily with just a little bit of notice.
My class was also well taken care of. Fortunately I do not teach my class by lecture. We learn by discussing the lesson and the class is great with discussion. The two books I use were already marked up with underlining and notes in the margin and questions to ask, so I gave Cheryl the books and asked her to get one of the capable members to lead the group. Well, three people stepped up to the plate. My daughter served as moderator to begin with for opening announcements and sharing time of blessings and prayer requests. While that was going on, two of the guys, Joe and Cliff prepared by skimming the books. Cheryl said it all went very well.

By afternoon my fever was about 102. However, ever since the CLL/SLL diagnosis, my regular temp is in the low to mid 97 range, so it was really a higher fever equivalent to over 103. I felt rotten and I was coughing too.

That night the high fever broke and I decided I needed to keep the appointment the next morning with my oncologist and I knew I could wear a mask in to protect the other patients. (They also have a sign posted asking for anyone with flu symptoms to wear a mask.) The exam went well until he was listening to my chest and he didn't like what he heard. Since I am so prone to pneumonia and have had it three or four times since the cancer diagnosis and twice when I had no symptoms including no coughing and it only showed up on "routine" CT Scans, he sent me right over for a chest x-ray and told me to bring the films back to him. When I got back he and his PA assistant looked over the films and decided I had something cooking in my lungs. He pointed out the light areas to me indicating fluid. So he gave me a prescription for antibiotics.

It is a week later and I still have a slight cough, but it is much, much better. With the excitement of the chest X-rays, I had forgotten to get my blood test results, so I got them today when I had my IVIg infusion. I knew they had been good lately, but I was shocked when I looked across the columns and saw that there has basically been NO CHANGE, neither in my white count nor in the absolute lymphocyte count since last March! After the rapid increases of late last year and early this year, the brakes were applied! Thank you, Lord. Even my platelets which had plummeted last month came back up to 120. My IgG level had only dropped into the 600's also. Still low enough for the infusion (under 700), but not real low. The one thing I wish I had thought to ask and didn't was, "why wasn't the white count way up last Monday when I was in the middle of the lung infection?" Normally when you have an infection your white count rises. Is it because of the damaged immune system that I don't mount a normal defense? I know some other CLL patients have had a jump in white count when they have been fighting infections, so I really don't know. However, as Dr. Wierda at MD Anderson has remarked several times, "I don't follow the norm at all." That could be a good thing to be abnormal, couldn't it? Stupid cancer, stupid disease.

I told Cheryl tonight that I sure wish I felt as good as my blood counts looked, but that is probably from fighting the stomach virus and pneumonia.

Now I have to go write another entry (I have several I have written in my mind - wish you were all mind readers as it would save me a bunch of time!)

How to Lose Ten Pounds in Two Days

2009-09-22T23:41:00.000-05:00

Step One - Come to my house
Step Two - Breathe deeply of the air
Step Three - Hug all occupants
Step Four - Go home and wait
Step Five - When you feel that little knot in your stomach, remain close to the bathroom
Step Six - After emptying all bodily fluids from every orifice, repeat and repeat and repeat again. When finished, repeat again.
Step Seven - Don't eat or drink for two days. Don't worry about will power, you won't want to and you can't.
Step Eight - step on the scales and admire your success.

As you probably surmised, we have been victims of a particularly nasty stomach virus. It started with our one-year-old grandson, Gavin. He became ill on Saturday. He got sick in his mom's car as they were coming over to drop Jonathan, Gavin's older brother, off at our house. Jonathan spends every Saturday night with us when they are in town. Cindy knew Gavin had not been feeling well for a couple of hours and she was not going to bring him in so I wouldn't get sick. However, she felt she needed to bring him in and get him cleaned up. I wore a face mask for a little bit, but that didn't last long - silly me. Of course he wanted Papa to hold him and I wasn't strong enough to resist. He got sick again, but fortunately he was with his mom at that point but they both needed a bath this time. After getting him and herself cleaned up, they went home. He was sick from both ends all night long and by morning she took him to the ER. They put him on zofran and also prescribed popsicles for hydration therapy.

Here is a picture of him in the ER in the middle of his "therapy"

Makes you say, "aww," doesn't it?

By Sunday morning Cheryl also wasn't feeling well and stayed home from church. She wasn't vomiting, but needed to stay close to the bathroom. By late afternoon she was feeling some better.

When Cindy brought Gavin home from the ER, she needed popsicles, so I told her I would go to the store and get them. When I brought them to her, I was planning to just drop them off at the door and leave. However, Gavin saw me and came running up and grabbed my legs and wanted me to pick him up. What could a Papa do? Of course I picked him up. He hugged my neck hard and put his head down on my shoulder. I knew I shouldn't, but I took him to his room and sat down and rocked him for about ten minutes. He just stayed very still with his head on my shoulder. By that point I figured even if I got sick it was worth it to comfort him.

Sunday night I was feeling tired and went to bed at 11, unusually early for me. At 12:30 I woke up with horrible reflux. I was awake all night, came out to the living room and reclined on the couch, half sitting up, but the reflux continued. It felt like my esophagus was on fire. By early morning I was making frequent trips to the bathroom, but was still fighting the nausea. Cheryl got up and said she was feeling fine and went to work. I called and canceled my appointment for my monthly blood test because I didn't want to expose other immune deficient folks. The lab is right next to the chemo room and I often wait for the blood test results in one of the chemo chairs.

I was supposed to meet with school administrators concerning problems with Jimmy's schedule (another involved story by itself), but there was no way I was going to make the noon meeting. Cheryl left work early and met with the school folks.

After the meeting, she found out that both Cindy and Jonathan (Gavin's older brother) had also become sick in the middle of the night. All of us were running mild fevers, but Jonathan's was up to 103. We were all aching, too.

At mid afternoon, I lost the battle and this virus did what eight rounds of chemo therapy failed to do, the vomiting started. Cindy, who is pregnant, has morning sickness all the time anyway, but this was even worse for her. She was getting sick constantly. Later that evening her doctor had her go to the ER because of concern for the baby. Cheryl went to take care of the kids. Unfortunately, it came back to her, too. So there she is at Cindy's house and all of them are sick and I was in bed barely moving. Cindy was released after several bags of IVs and anti-nausea shots. They wanted to keep her, but she wanted to get home knowing everyone was sick.

Cheryl stayed home today. We both had a bowl of soup and toast tonight for supper, the first I had eaten since Sunday afternoon. We are no longer tied to the bathroom, but we are totally wiped out. We dozed off and on all day. Before she went to bed, she said she was going to try to go to work tomorrow.

I called Cindy and they are all better now. Jonathan is going to school tomorrow. It was short lived, thank God! But very, very nasty.

Yes, I did lose 9 pounds. Now I just have to figure out how to get rid of the other 40. All I know is I don't want to do it this way.

I'm Still Here

2009-09-18T00:40:00.003-05:00

Give a man a fish and you feed him for a day. Teach a man how to use Facebook and he won’t bother you for two months!

I am sorry that as of today it has been two months since I updated my Blog. For those who have followed me over the years you know that I seem to do this a couple of times a year. I will be very prolific in my writing for awhile and then I seem to disappear. As I have mentioned before, I am not too sure why this happens but I imagine some shrink would be very happy to try and discover the deep, dark reason.

Well, this time the main reason is Facebook. I am very glad I don’t gamble because I think I must have an addictive personality. When I joined the support site CLL Forum when it first started up and then a little later CLL Christian Friends, it seemed like I was on it every waking moment. If I was out of town teaching, I couldn’t wait to get back and check to see what the latest news was. And then, after a year or two, I started having periods of disappearing there, too. I know that sometimes it just seemed like I needed a break from thinking about cancer 24/7.

Now I am fascinated with Facebook. I had resisted the efforts of some friends to join for quite some time. And then, for some reason that I have already forgotten, I took the plunge. At first I didn’t know what I was doing and I had to have my daughter come over and show me how to use the site. One of the things she showed me was where to find all the free games (Mindjolt - dozens of choices there -, Farkle and Yacht). Yikes! I have been hooked ever since. Why do I feel that I need to keep playing those games until I beat the daily, weekly, or monthly high scores of my friends? I am usually not that competitive. I also have three farms going raising virtual crops and animals. One time my virtual pumpkins rotted on the vine because I didn’t harvest them in time. I was upset!!! The crops were wasted and I had thrown the “money” away that it took to buy the seeds. I would like to reach the highest level on each of the farm games and be able to buy and place the large homes/mansions onto the expanded farm land. Good grief!

I am connected to 91 friends and I actually know all but one (and I may know that person – stinking memory). These are folks from church, my military career, former places of employment, former places we have lived, my leukemia support sites, or family members.

HEALTH UPDATE

So, what is going on with my leukemia/lymphoma? Fortunately, not much. Since I last wrote, I have had two blood tests and everything remained stable except for my platelets which took a huge drop on the last test. I am not too concerned for a couple of reasons. First, previous to that test they had climbed and actually reached the edge of the normal range. Second, even though they dropped into the “stage four” area, it was only one test and we need to see a pattern. Also, they have been in that range many times before. My platelets are the one area of my tests that never seem to be very consistent. I did nick myself shaving this past Sunday morning and it took a very long time to stop bleeding and then started bleeding again almost an hour later. It was only a very small cut. I have a monthly test next Monday, so we will see where they are then.

When I had my IVIg treatment in August, I had a really rotten week after the infusion. I am not sure it was from the infusion with the steroids, but my feet and legs swelled so bad that I couldn’t get my shoes on for several days. I had to keep my legs elevated or they got even worse. I also felt poorly all week. Not exactly sick, but certainly not good.

The feeling puny has been happening off and on for several weeks. I have been getting a lot of headaches and just not wanting to do anything. I will be interested to see if there is anything reflected in next weeks tests. And then the stupid leg itching started again last week. I have no idea why, but it sure is aggravating. Some days are worse than others. No rash this time, just the itching and swelling behind my knees and up my legs. It is only on my upper legs and that is a blessing. So, I am slathering up with the prescription itch cream. OK, enough whining!

I do have a couple of blog entries I want to write very soon. First I am about to kick off my fundraising for the annual Light the Night Leukemia/Lymphoma Society Walk next month. I am a little slow with the kickoff again this year and I was even on one of the organizing committees. Second I really want to update what is going on with our cabin – and it is a lot! Ever see the 1986 movie The Money Pit?

Well I will close for now as I need to go check on my corn, rice, cotton, blueberry and pineapple crops. Even though I have been called a twit a few times in my life, I have no plans to join Twitter!

My MD Anderson Appointment - Medical Update

2009-07-18T19:07:00.002-05:00

Several folks have emailed and asked about my appointment, so, here is the update. We got back from New York a week ago today, slept too late on Sunday for the early church service we attend, but did go to the adult Sunday School class I normally teach. I already had someone else to teach as I didn’t know if we would be back on time. I’m glad I did. After we got out at noon, we came home, changed, repacked and headed for Houston for my appointment with my CLL specialist. My grandson, Jonathan, rode with us because Cindy was also heading for Houston for her job. She had a class to teach on Monday and another on Tuesday.

After stopping in Brennan, TX, home of Blue Bell ice cream (they eat all they can and sell the rest), for our traditional ice cream cone, we arrived in Houston. I checked into the International Rotary House that is connected with MD Anderson and we got a free upgrade to a very nice suite. They were running short of the King room I always get (the cheapest), and since we were only there for one night, we got the suite. Sweet. Instead of waiting to get my blood drawn at the hotel where I would have been number 20 something in line, I walked across the skywalk and had my blood drawn at the regular clinic lab that was open on the second floor. There were only two people ahead of me so I was in and out in no time. I had two reasons for this. First, the actual appointment time for the blood draw was Monday morning with a 1 p.m. doctor appointment. By getting it done Sunday, I didn’t have to get up at any particular time and then go and wait a longer time up in the leukemia lab. Second, I didn’t want to wait at the hotel because we were going to be meeting with my nephew, Doug Redfield, and his family at their apartment in Katy, a suburb of Houston. We were to go out to dinner together. He and his family had moved to Houston only the week before. He works in computer programming (I think) and had started a new job with lots of responsibility. He has been working in this field for years.

Before we left our hotel, I called Cindy and she was all checked in at her hotel and had set up her training room for the next morning. She arrived at Doug’s only a minute or two behind us. We visited for a short time and then headed for dinner. After finding out the wait for a table was very long at our first choice, Saltgrass Steakhouse, we drove further on to Ruby Tuesday’s where there was no wait. I think there were eleven of us so we had a large table set up. We had a great time visiting and probably stayed too long at the table. However, there were no patrons waiting and the tip should have made up for it.

Cindy had her traveling babysitter, Tiffany, with her along with Gavin. Since she only had a room with two beds, Jonathan was going to be sleeping on the floor. Since we had a full suite, we had him stay with us and he slept out in the living room on the couch.

The next morning we took our time getting up and around and then went over to the cafeteria in the main building and had breakfast. Since it was close to eleven when we were done, we sat down in the Aquarium area on the first floor and Cheryl read her book. Jonathan and I played a sick game called, “Who Has the Cancer?” As people walked by we tried to figure out if they were a staff member, a family member, a friend, or the patient. Staff was easy because they wore ID badges. The others were sometimes easy, but not always. It really is sobering when you realize that everyone in that huge complex is somehow related to cancer. I pray someday there will be no need for that facility to exist and their motto, “Making Cancer History,” will become a reality.

About noon we went up to the 8th floor where the leukemia clinic resides. I had my vitals taken, paid my co-pay, and waited. Miraculously I was called in at my appointment time. First met with the nurse, as usual, but our regular nurse was on vacation so we saw someone new. Following the normal pattern, we were expecting to next meet with one or two young doctors, who I think are students. But much to our surprise, Dr. Wierda came in and without anyone else observing. He asked how I had been doing and about any symptoms. I told him about the concern I had a couple of months ago with the facial glands really getting large, my local doctor suspecting an infection and putting me on Levaquin, and then the nodes receding again, He confirmed that when the nodes under the ear get large quickly, it usually indicates an infection. He did seem a little surprised both sides had swollen. I then mentioned how weird this disease was because I had stabilized the last couple of months after some rapid progression. He again said that my disease wasn’t following the normal course anyway. He pulled up my blood work history on the computer and immediately noted that my cancer load had doubled in six months, one of the indications for treatment. My neutrophils were also low at 1.0. However, my platelets were all the way up to 135, the highest they have been at their lab in four years. Also, my IgG level was still over 900 and it was exactly three weeks since infusion.

Discussing with me how my lymphocyte count had slowed and then dropped a little the last two blood tests at home, and the fact my platelets were looking really good, he decided no chemo for now. He also said there are so many new treatment options right around the corner that he wouldn't even discuss treatment protocols with me right now because there will be a lot more choices when my time comes. Hmm, for the first time he didn’t mention FCR!! First he said to extend my IVIg infusions to every three months since my counts were up so good, but when I told him the last time I was down in the low 500's at the two month point, he said to go with every two months. He wants the level to be above 700, so he said when it is between 500 and 700 to have the infusion. At almost $14,000 billed to my insurance company for each infusion, I will gladly stretch it out as long as I can. He didn't say anything about a transplant this time which is also very good. He said he could feel "good size" nodes in my neck. No surprise there as I can feel them and see them.

Bottom line, still on watch and wait! Return appointment in six months with the understanding if things started changing with my monthly lab work to contact him.

I have now officially reached the three year anniversary since stopping chemo. If you remember, when we stopped at the end of July 2006, the doctor said it was to give my body a three to six month rest because I had not reached remission and bone marrow biopsy showed I still had 50% cancerous cells in my marrow (but down from 90%). As I have said before, I may not have reached remission, but this intermission has been just about as good. Also, the Great Physician’s time schedule has been much different than what my doctor predicted.

Thank you for your prayers. With your continued prayers, how much longer do you think I will be able to go without more chemotherapy? I wouldn’t even venture to guess because I have been wrong so much. Thank God!

Fishing from My Backyard! Or, How I Spent My Summer Vacation

2009-07-14T23:34:00.006-05:00

(No leukemia information in this post)

After a total of 4,350 miles up and back to our new (old) cabin in upstate New York with some extra running around visiting, and another 405 miles down and back to MD Anderson for my appointment with a side trip to Katy, TX, to visit a nephew and his family who just moved there a week ago, we are finally back home. Whew, it’s HOT here in Texas, 105 yesterday, 104 today and tomorrow about the same! It is predicted to be at or over 100 for at least the next ten days and we have had 28 days over 100 so far. It is the hottest summer on record thus far, following the hottest on record last year.

I have lots to write about, but I plan to break it down into a couple of somewhat smaller posts instead of one long novel.

We had a range of emotions on our trip and the first couple of days we even felt a little depressed with some buyer’s remorse over our cabin. However, for this post I will write about only positive things.

The weather was mostly fantastic, from our perspective. Here in Texas we have been experiencing a severe two year drought and hotter summers than normal. While we were at our cabin, the highest temperature was 75, some days never reached the 70’s and the nights were in the 40’s and 50’s. The morning we left, it was 45. Our cabin is on a small lake located up in the hills, so it is even cooler up there. We had a fire in the fireplace several mornings and the space heater going each morning. I would dress in warm sweats in the morning, change to short sleeves in the afternoons and back to sweats in the evening. We heard they only had three days in June that hit 80, and those were before we arrived. It rained every day but one, but also saw periods of sunshine most every day. The rain, sogginess and dampness were beginning to bother Cheryl some by the time we left, but it really didn’t bother me that much. I just wore water shoes out on our soggy lawn. We do plan to buy a humidifier for the cabin when we return for the entire summer next year. Most folks were complaining about how cool it was as they wanted summer temperatures in the 80’s, but for us it was a relief from the Texas summer heat.

We spent lots of time with family. We spent one night on the way and one on the way back with my brother Bob and his wife, Priscilla, in West Chester, Ohio. I told him it was the best bed and breakfast around. He fixed dinner and breakfast both times we stopped and we had a really nice visit with them and their daughters. Our first night in New York State we spent with my brother Jim and his wife, Barb. The next morning we visited with my mother in the nursing home before heading for our cabin. At the cabin, Cheryl’s sister, Diane was waiting with two of her grandchildren to help us unload the U-Haul we had towed up.Even though everything was left from the previous owners, we brought an extra sleeper couch and extra mirrored dresser we had here along with some personal items to make it more our place. We brought our grandson, Jimmy with us and that strong young man was a huge help to us the entire trip. He was extremely well behaved the entire time, even when we were running out and visiting more family and he probably would have rather stayed and fished. We got the U-Haul emptied quickly and Cheryl and Diane set about getting things straightened around and beds made.

Other family that visited our cabin at the lake were my Mom; Jim and Barb and one of their grandsons; my youngest brother, Bill and his adopted daughter, Ruthie; Cheryl’s brothers Randy; Larry; Bill and his wife Diane; Rick and his wife, Cheri and their granddaughter; Cheryl’s sisters Diane and two of her grandchildren; Janet; and Mary Jane and her husband, Dave. On the fourth of July we had a cookout with six of Cheryl’s family members and we played cards from 11:30 in the morning until 11 p.m. (I managed to sneak in a two hour nap on the couch right beside the noisy card table.) We watched the fireworks around the lake from our front picture window while we played cards. We also went and visited with lots of other family at a graduation party for a grand niece and a surprise birthday party for Cheryl’s brother, Bill.

When my brother Bill came up from NYC, he and his daughter spent the night with us and the next day he went to the nursing home where my mom is a resident and entertained the residents. He is a singer, dancer, and actor and has been in at least 11 Broadway shows, many more off-Broadway shows, national and international tours, and has even done his own award-winning cabaret act in NYC. His most recent show, Guys and Dolls, closed the week after he was on the Tony Awards show. Hmm, that made it sound like it was his fault the show closed. It wasn’t. He sang ten songs at the nursing home and even danced with one of the residents who pushed her walker aside and did a little jig with him. He obviously sings very, very well, but his interaction with the residents was very special as he bantered with them, answered their questions, hugged, posed for pictures and just brightened their day. Being close to family was a reason for looking to purchase a summer place and we obviously accomplished that goal.

Another goal we had was to purchase a place on a lake so I could fish. All we could afford was an older cabin on a small lake and I was a little concerned the fishing would not be that good. I was very wrong! There are lots of lily pads around the lake which make great fish habitat (but are a detriment when right in front of the cabin). It is a private lake with no public fishing and the lake association stocks it every few years with small and large mouth black bass.

Our first day was very busy setting up the cabin and cleaning (well, Cheryl did most of the cleaning). The second day was busy shopping for supplies we needed and we drove to my brother’s house with the U-Haul we still had and picked up an entertainment center and TV that had belonged to my folks. They came back with us to help us unload and set it up and then had supper with us. Jimmy had been out a couple of times fishing in a paddle boat that came with the cabin and he had caught some fish and even a turtle. But I still hadn’t been out on the lake and I was getting anxious to go. So on the second evening after my brother and his wife left, Jimmy and I finally went out in the small aluminum row boat that came with the cabin. There is a small sign attached to the back of the boat that says, “U.S. COAST GUARD MAXIMUM CAPACITIES 2 PERSONS OR 300 LBS.” Now Jimmy and I are both, umm, large and we are over that maximum. However, in smaller print it says, “445 lbs. persons, motor, gear 7 H.P. motor.” Since we didn’t have a motor – not allowed on that lake – and only two fishing poles and one tackle box, I calculated that we were pretty much OK. Besides, we were not on the coast where the Coast Guard patrols, I was in the Air Force so maybe it didn’t apply to me, and I am pretty sure my scales lie to me about my weight anyway. My first fish was a yellow perch that was about 8 or 9 inches long, not bad for a perch, which is a pan fish. In West Texas they call other fish perch, but here is what a yellow perch looks like: We decided to row to the other side and try our luck there.

When we got to the middle of the lake, I thought it was a good time to teach Jimmy how to row. He came over to the middle seat where I was and sat down to my left. I started to move to the rear seat where he had been. Of course the boat rocked some. Jimmy did the right thing and leaned to the left to balance the boat. However, he immediately thought, “Oh, oh. Grandpa might fall in I better help him.” He half stood up and leaned/moved over to help me. Over 400 pounds on one side of a boat, a very small boat, a very small boat that doesn’t hold that much, a very small boat that says not to exceed two people or 300 pounds, and physics takes over. The boat leaned to the right. Well perhaps leaned is too weak a term. Actually the seats became vertical to the lake and the sky. Well, the entire boat tipped to the side and went vertical. Now when the vertical pitch occurs, everything that used to be comfortably seated in the boat – oars, fishing poles, life jackets, new tackle box…and occupants – are no longer comfortably seated, but are pitched into cold water. Jimmy went in head first and I gracefully slid off the seat into the water. The boat went back upright but now it was half filled with water and with none of the other items. Jimmy started to panic, but he did grab one of the life jackets. I grabbed all of the other important items – oars, fishing poles that were somehow still floating and tackle box – and got them back in the boat. I also got Jimmy calmed down and told him we would be OK. Jimmy wanted to turn the boat over because he had seen that in a movie. I convinced him that was not a good idea. We held onto the side of the boat and decided we could swim it in. We paddled and kicked for about 15 minutes with some rest periods, but I couldn’t see we were making any real progress. It was getting towards dark and there was nobody else on the lake. The evening was too cool for folks to be sitting outside so no one saw us. We had tried to get back in the boat, but of course it tipped up again. Then I realized if I had Jimmy go to the other side and I held my side down, he might be able to get in. He went over and pulled himself right up and in. Now it was my turn. Since I have had several years of a lot of steroids, I don’t have a lot of muscle strength – too bad they don’t use the type that are supposed to build muscles. Between my weak muscles and my bad back, I couldn’t get myself up and in and Jimmy couldn’t come to help because the boat would tip up again. So, I taught him how to row while I hung on to the side. At first there was lots of splashing of the oars but he soon got the hang of it. Obviously while hanging on to the side of a boat and now hoping no one is watching, one doesn’t think too clearly. I thought Jimmy was pulling too much with his stronger right arm and about every fifth pull of the oars I had to tell him to pull only with his left arm to correct our direction. AFTER we got to shore it dawned on me it was because I was hanging on to the side and creating drag. If I had gone to the rear of the boat it would have been easier for him to row and keep on a straight course. We were almost to the shore to the point were I could stand when I moved to the back of the boat as he came closer to the dock. At that point Cheryl came out and said, “John Wagner, you get out of that water right now!!” She said she saw us from the window with Jimmy rowing and me in the water and immediately had figured out what happened and was trying to lighten the moment. Umm, I didn’t find it that funny at that moment and didn’t realize she was kidding.

Because Jimmy had taken us right into a floating bog that occurs when lilies die and decompose, my shoes and pants were a little, well, a lot dirty and smelly. Even the pockets had filled with muck. Cheryl wanted us to strip in the yard and get the clothes off before coming into the cabin she had been cleaning for two days. I didn’t think that was such a great idea since we hadn’t even met all of the neighbors yet and that was not the initial impression I wanted to make. Actually it wouldn’t even be the last impression I would want to make. We compromised and I stood on the little porch by the door and she wrapped a blanket around me as the clothes came off. I then headed for the shower to warm up.

Of course we have laughed a lot about this since then. Before going out on the boat, I had the foresight to take everything out of my pockets before we went out, except for the very special pocket watch my grandson Jonathan had given me. It stopped working after it filled with water and the circuitry short-circuited and fried. Upon our return yesterday, we were able to find a replacement. Jimmy now has a story to tell his grandchildren some day. For some reason whenever we went fishing after that, Jimmy took the paddle boat while I went in the row boat. We would stay fairly close to each other as we fished and talked. He felt much safer that way.

Over the next week and a half we caught lots of fish. When I was using night-crawlers (large worms) I caught a bullhead that was about 13 inches long and many of some of the largest bluegills and sunfish I have ever seen. That day I was brave and took the camera out with me on the boat and got a picture of one of the bluegills. You can see that is almost as long as the boat seat is wide.

Here are a couple of other pictures I took while out on the lake:Looking towards our cabin. Small red spot, second from right.

Our cabin taken from the same spot as the first picture, but using the zoom feature. You can also see the red storage shed to the right of the cabin.

Sunset on the Lake Gerry.

Our last day there, I caught the largest black bass I have ever caught and landed. As soon as it hit the lure and I hooked it, it did the bass-leap into the air to try and shake the hook. It was fun landing him. I lost one larger when my line broke at Lake LBJ in Texas, but that doesn’t count. Unfortunately I didn’t have my camera with me and since I do catch and release, I didn’t have a stringer or any way to keep it alive so I could get a picture. I estimate that it weighed close to eight pounds and was 23 to 25 inches long.

During our stay, we saw other folks catching large bass and very large pickerel. For the 4th of July, the Lake Association held a fishing contest. I didn’t hear the winners for the adult division, but the two largest winners for youth went to a little girl and a little boy, both about 7 years old. One caught a 23 inch black bass and the other caught a 21 inch pickerel. One young man caught a 13 inch crappie. I didn’t enter the contest because of all the company we were having. One night it was a little late to go out in the boat, so I sat in a lawn chair and fished from shore over towards where my neighbor had cleared out his lily pads and right on the edge of ours. I caught a few fish. I came in and said to Cheryl, “How great is this? Fishing from my own back yard!” Obviously my “good fishing goal” was filled at this lake. I can’t wait to get back there next year and do lots more fishing. I will be using an electric trolling motor which is allowed on the lake. I plan to take a tape measure and fish scale, too. Oh, and maybe take a waterproof camera or at least a waterproof bag for my camera.

Later I’ll talk about some of the frustrating things of our money-pit…uh, summer cabin.

My Dad had CLL

2009-06-21T00:53:00.008-05:00

My dad had CLL and survived with it for over 20 years. He died in November 2003, just 15 months before my own diagnosis with CLL. This Father’s Day has me reflecting again on his life and the influence he had on me. I wish I knew more of the details of his disease, but I don’t for a few reasons. First, Mom and Dad were the type of folks who never questioned doctors and never asked questions of doctors. Second, we were in Germany when he was diagnosed and lived in Texas the rest of the time while they resided in upstate NY. Most of the information we got, came from whatever information my oldest brother, Jim, could find out from the doctors. In the beginning, that wasn’t too much because Dad didn’t think it was necessary. We got lots more information near the end, because Jim and his wife, Barb, became his primary care giver. They did a lot for them over the years, and still do for Mom. Third, we didn’t have Internet for research until the late 90’s, and then I really didn’t know how to research back then. I still feel a little guilty for not being that informed. I wish I had known to give him the best advice there is to give to someone with CLL: go see a CLL specialist for a second opinion and not just a general oncologist or hematologist!

Mom and Dad came down to visit us most every winter, sometimes for a few months at a time. I always suggested he bring his medical records when he came, but he never did. He also never got copies of his tests. I remember when he was first getting chemo, I asked him what kind and he said the kind that goes into your arm. He didn’t know the name, just that it was chemo. We rarely called it CLL, just “leukemia.”

He was one tough guy. In the early 90’s, he was told there was nothing more they could do for him. I guess he didn’t listen. He went into what we think was a spontaneous remission and the leukemia stayed in the background for many more years. However, he was assaulted with several more cancers. He had multiple skin cancers taken off, and no, I don’t know which kind. Then he had thyroid cancer and had surgery and radiation. Also throat cancer and he lost his voice, except for a hoarse whisper, for several years. I think that bothered him more than anything. He suffered seizures, but medication controlled them. And he had a horribly bad heart. The last couple of years they told him he only had 10% of one artery open and all the rest were blocked. He took nitroglycerin pills just to get the trash to the curb his last year.

Now, you would think that with all that going on, he was an invalid confined to bed. But you would be wrong. Except for that last year he was very active. He did retire a little earlier than he wanted from his job as the shoe designer for Norwich Shoe Company. They made shoes for Tom McCann, Hush Puppies, several other brands and many discount stores – same shoes, different labels. After retirement, he bought a large boat, large camping trailer and they parked it up on the Black River and he fished there and Lake Ontario all summer for many years. He also played golf most of the year unless there was snow on the ground and then still would if it was only a little snow (used a different color ball). The last few years his heart was too bad to play 18 holes but he would play a few. And then he would also go to the indoor driving range and hit a few buckets. He didn’t want anything slowing him down.

He was always surprising us. None of us were sure he would make it to their 50th wedding anniversary. Then, when we were planning their 60th anniversary celebration, we thought he was just willing himself to get to it. May 30, 2003, five and half months before he died, Mom and Dad celebrated their 62nd anniversary!
One time when he was on hospice, he drove down to Texas to visit us! He just told them he was going to be gone for a little while. They removed him from hospice after 18 months that time.

When the leukemia revved up again those last several years, he would get pneumonia multiple times a year and it came on very, very quickly. He could be fine and then within a half hour be running a very high fever – sometimes 105 degrees or more. Night sweats were terrible for him. Sometimes they had to change the sheets and pillows more than once a night. Mom always tried to make sure someone went with him out on his boat when he was fishing, but she wasn’t always successful. She even went out with him sometimes and she never used to do that.

His last year was the only year when he really couldn’t do much of anything. He lost a lot of weight and for the first time actually looked sick. Mom’s 89th birthday was that October 25th, just a couple of weeks before he passed and even though he was quite ill, he insisted on taking her to their favorite little restaurant. So, with Jim and Barb’s help, he took her there. I understand they had to help him walk in, but he made it.

Because I was always careful with vacation time, both while in the military and after in regular jobs, we were able to go and see them often. In fact we went up three times the year he died and we were able to spend time with him less than a month before he died. All four of us brothers were there then. But what about the years when he wasn’t sick? Here are a few of the things I remember about him.

Dad was a man of many, many, natural talents. Dad never finished high school. His own father died when he was only 12 and as soon as he could, he quit school and went to work to help support his family. He was a very, very hard worker. For most of my younger years he worked two jobs. He worked in the shoe factory during the day and at a machine shop nights and weekends. He didn’t have a car during those years, either. Apparently they had just gotten their first car before I was born, and then when I was only six months old, I got severe pneumonia and was in the hospital for quite awhile. They had to sell the car to pay hospital bills. He would walk home for lunch, lie down on the couch for about 15 minutes and then head back to work. He would come home for supper that mom would have ready, eat and then walk to his second job. He would get home about midnight. When he started at the shoe factory, he started in the warehouse moving boxes around and loading trucks (I did that for two summers, too – yuck!). Then he started repairing the machines they used making the shoes, a natural talent. As he watched them working the machines he figured he could do that and since it was “piece work,” getting paid for the amount done, he thought he could make more doing that and transferred to that. (I also worked on a machine gluing down the leather underneath where the heal goes – double yuck. I still have scars from the hot glue.) He watched the Pattern Man cutting out the patterns from the designer’s drawings and figured he could do that for more money. He became a Pattern Man for many years. At some point during that time frame, the second job at the machine tool shop finally was able to go away. After all those years cutting out patterns for the designer’s he decided to give designing a go. Since he had natural art ability, he could paint and draw wonderfully, he made an excellent designer. He was one of several designers for Endicott Johnson Shoe Company. When I was a senior in high school, he was hired by Norwich Shoe Company as their sole designer – well, I should say only designer because he designed the whole shoe! Ha! He did that for about 20 years. Amazingly the sample shoes through the years seemed to always be made in the sizes all of us boys wore. It still bothers me to pay for shoes.

While he was still working for Endicott Johnson Shoes, he decided to open a sport store which he called Don’s Sport Shop. He carried mostly hunting and fishing goods, but other sporting goods and shoes, too. At Christmas he branched out into a fairly large toy section. Mom worked it during the day and he worked it evenings and Saturdays. But they were always closed on Sundays. He had a good business going, but not much business sense. He was much too kind! He gave anyone credit who asked and just kept track on index cards. Many never paid. When kids came in he was always giving them free stuff for fishing. Anyone who asked for a discount got one. Finally after a few years they went out of business. They held an auction and Mom cried through most of it before finally leaving. What didn’t sell got moved to our cellar and he slowly sold it to friends over the years. He refused to declare bankruptcy and slowly paid all of his merchandise creditors off even though it took him many years. He taught me a lot of great lessons doing that.

Now, you would think Dad was working so much he wouldn’t have had time for his boys. He did work a lot, but he still did a lot with us. He coached little league, often took us out with him when he went rabbit hunting. Took us to the town dump where he got target practice shooting rats. One year he took my younger brother and my scout troop to summer camp for the week.

He absolutely loved Christmas and was always the biggest kid there on Christmas morning. He was usually the one to wake us up before dawn on Christmas morning. Sometimes he would have to go to work for a little while and then Santa would show up. Too bad Dad was never there to see him. I remember one Christmas morning he had us all outside to see Santa fly across the sky. He had me convinced I could see him.

Dad and I spent hours and hours fishing. I was the only one of the boys who enjoyed fishing. We mostly fished streams for trout but also some bass and pike. Later in life I went salmon fishing with him.

I cherish the fishing memories. He taught me fly fishing, and how to use all kinds of artificial lures, live minnows, salted minnows, dobson, crawfish, worms and night-crawlers. He also taught me how to go carp fishing with a bow and arrow with a special reel attached. There weren’t too many aspects of freshwater fishing he didn’t teach me. April 1st was always a very special day when I was growing up. That was the first day of trout season in New York State. School? Well, if April 1st fell on a school day, I was allowed to play hooky. It should have been a school holiday, anyway. I would start dreaming of that day for several weeks before the big day. That night was spent in restless sleep of anticipation. Long before first light dad would quietly come to my room to wake me up. That was the only day of the year, other than Christmas, when I was out of bed in seconds. We would quietly get ready and leave without disturbing anyone else. Sometimes we ate breakfast at home, but often stopped at a diner where other fishermen had gathered. We never went to the same stream we usually fished the rest of the year, because this was a special day and special days called for special streams. We usually drove for a couple of hours to get to whatever special place dad had picked out. One never knew what the weather would be like that time of year, but usually it was very, very cold. I remember a couple of times trying to find a stream that wasn’t frozen over. I didn’t care. Many times I didn’t catch anything that day. I didn’t care. Dad almost always caught something, I was proud. One time I watched as he slipped, fell and slid down a dam into the water. I laughed. He didn’t care. He laughed too. And shivered.

Dad and me probably around the summer of 1955 or so.

Dad was a natural at all sports. As a little kid I remember going and watching him play baseball. Almost every year he shot a deer. One year while bow hunting, he shot two with one arrow. There was a doe standing behind a buck and the arrow went through the buck’s neck and into the doe. Oops. When I was a young teen, I discovered he had been a “pin boy” setting up the pins at a bowling alley when he was younger, but he had never been bowling. I was on a junior league and was pretty good, so I talked him into going with me because I thought I could finally beat him at something. I think my average was about 135 or so. The first time he ever bowled, he bowled a 180. I lost. Then he joined two leagues. When he moved to the Norwich Shoe Company, they talked him into playing in the golf tournament during their annual picnic and clam bake. He had never even held a golf club before. He kept telling them he didn’t want to, but the owner of the company, Mr. Weiman, insisted he play. He won the tournament and was hooked for life. I’m not sure Mom ever forgave Mr. Weiman. During another tournament he made a hole-in-one and was so excited because he knew he had won a trip to Scotland because he had purchased an “insurance” that paid off with the trip for a certified hole-in-one. He came home all excited to tell Mom. She turned pale. She never sent in the $100 fee because she thought it a waste of money. I think I heard Dad hollering all the way to Berlin where I was stationed. Dad filled out new paperwork and Mom sent it in. A year or two later, Dad got another hole-in-one. They went to Scotland. He played St. Andrews. They stayed married.

I could go on and on, but I think you have an idea of what he was like. He was far from perfect and certainly had his faults, but he always took care of his family. He loved us and we loved him.

I hope I am able to keep fighting my own CLL as long as he did and with the grace he did. Maybe if I can go 20 years they will have a cure. If not, it will still have been a nice long life. Keep praying.

I wish any fathers reading this a very Happy Father’s Day. If you have lost your own father, I hope you have wonderful memories of him as I do of my father.

Health Update - More Weirdness

2009-06-16T03:41:00.003-05:00

Since I am going to be up all night anyway from my IVIg treatment with steroids yesterday, I thought I would give a health update. I thought I had mentioned that my lymph nodes have been swelling up larger and larger for the last month or so and that a new group on both sides of my face had popped up, but glancing back through the recent entries, I don’t see anything. I guess I just talked about it on cllforum and cllcfriends. Anyway, I had blood work last week and I just knew my last report of the slow down in my accelerating cancer load was going to be only temporary and I was going to see a large gain. The day or so before the blood test the nodes really felt quite large to me and one on the side of my neck was actually sore and all were uncomfortable when I lay down at night.

Imagine my shock when both the white count and the absolute lymph count actually went down! Now don’t get me wrong, that is terrific news, but I was quite shocked. Oh, the platelets did drop too, which is not the direction I want, but still just above 100, so that is still good. When Thomas, the nurse, showed me my results, I voiced my surprise. He asked why I was surprised and I told him since the nodes along side my face had popped up and the ones in my neck were quite a bit bigger in the last several weeks and one even was sore, I expected the counts to have gone up a lot. He visually looked at my neck and said he could see they were up and went to talk to the doc. He came back and said the doc wanted the PA to look at me.

This was the first time I had seen the PA. He said he was new to the office, but had been with the group for seven years. Anyway he was very, very thorough in his exam, poking and prodding everywhere, listening to my lungs, checking ears and throat, etc. He said my nodes were obviously swollen, but since he had never seen me before he didn't know what to compare them with. So, he went and got the doc.

My doc came in and said yep, they were bigger (at least I knew what I was talking about). Since I had a low grade fever (didn't know I did), he ordered a chest X-ray and put me on Levaquin for a week. He thought I had an infection somewhere. Since I had pneumonia and the E. coli lung infection last year, both without symptoms, he wanted to check out the lungs. He said if the nodes were still up when I was to see him yesterday for the scheduled appointment, he might order a CT scan to see if the other internal nodes had swollen that much.

Now, with the Levaquin, I was supposed to stay out of the sun, be careful of tendinitis and watch my blood sugar as this antibiotic can raise the blood sugar for folks with diabetes. Oh and it also can cause nightmares and it really did, some very strange, scary ones that woke me up in the middle of the night. Ah the joys of CLL/SLL. Always gives me something to think about (write about) and new experiences at unexpected times.

To tell you the truth, I thought he was wrong. I really didn’t think I had an infection; especially when I didn’t receive a call last week with any bad news about the chest X-ray. However my lymph nodes did start shrinking and by yesterday they were almost back to the way they had been – not normal but not hugely swollen either. The ones on my face are still there, but about like the rest.

I asked him why, if I had an infection, the white cell count actually went down instead of going way up. He said it doesn’t always correlate that way and that I had a history of not always reacting in the “normal” way. So, apparently I had another mystery infection of some type. Now that the Levaquin has all been taken it will be interesting to see if the nodes swell back up.

My IgG levels did plummet as expected so I got my scheduled IVIg infusion. However, even that didn’t go exactly right. A new fellow mixed the lovely potion. The last several times I have been getting stuff premixed from the supplier, but not today. It had to be mixed in the office. He somehow broke a black rubber or plastic seal inside the HUGE bottle (instead of six little bottles). There were little black pieces of the seal floating around in the solution. He couldn't throw it out as it costs many thousands of dollars, and I guess he couldn't transfer it. So the nurses who were temporarily out at my location, conferred and then put a filter midway in my infusion line. Of course the filters kept clogging and stopping the pump. They kept changing filters until they ran out about quarter to five. The nurse assigned to me couldn't see any more pieces (neither could I), so she just removed the filter from the line, turned up the speed and finished me off by office closing time. It was just a very, very long 8 hour day in the infusion chair. I hope my regular crew is back next time.

I am calling a halt to all the weirdness for at least a month. We are getting ready to go on our vacation that we have been looking forward to with great anticipation. We don’t want anything interfering with our preparations or our actual trip.

Hm, no weirdness in my life. Figure the odds!

What Would You Do to Save a Life?

2009-06-12T21:03:00.002-05:00

How far would you go to save someone's life? Would your answer differ if it was to save the life of a family member? A friend? An acquaintance? What about saving the life of a complete stranger?

If we were talking about a family member, I imagine most people would answer, “I would do anything I could.” But it might take more thinking when it came to a stranger and I imagine there might be limits for many people. Not long ago I read about a lady who donated a kidney to another lady she barely knew. I marveled at the heroics of the situation and that was why it was newsworthy. We have all read about heroic deeds. Someone rushing into a burning building to save strangers; jumping into the water to save a drowning person; passengers, who were strangers, banding together to thwart another terrorist attack. Perhaps we wondered if we could be as brave.

Perhaps you don’t know, or have forgotten that there are things "ordinary" folks can do that aren’t as extreme as donating a kidney or rushing into a burning building or some other such deed, but are just as critical in saving a life. You can be a hero to someone! One of those heroic deeds is the “simple” act of donating blood. With all the new rules in fairly recent years, many folks have been excluded from doing that. Therefore it is even more critical for those who can, to do so. Check out the Red Cross website for the very long list of exclusions to blood donations. CLICK HERE My wife and I used to give regularly, but since we lived in Germany from 1980 to 1985 while in the military, neither we nor our girls can donate. Of course they wouldn’t want mine now anyway. Now that I receive regular IVIg infusions to boost my immunity, I truly understand how important it is that folks donate. IVIg contains antibodies that are extracted from the plasma of 8,000 to 10,000 blood donors. Is it any wonder why this stuff is so very expensive and is often in short supply? Someday I may also need transfusions of red cells or perhaps platelets or both. These are only available through the generosity of blood donors.

Another thing people can do to save a life is a fairly simple initial step, but does take more commitment to follow through. That is to register to be a bone marrow donor. Now, I can almost see many of my readers scrunching up their face and saying, “ouch, ouch, ouch, no, no, no.” Before I understood how it is done, I would have reacted the same way. In reality, the way they do it now, there is no pain during the donation because you are either totally knocked out, or you are given a block. Also, most times now it is not actually the marrow that is harvested, but stem cells from your blood. You are given injections to make your bone marrow produce more stem cells and get them circulating in your blood and then you donate by having your blood drawn out of one arm, the blood is circulated through a machine where the stem cells are extracted and then your blood is put back into you through your other arm. True it is not as simple as donating a pint of blood, but the process saves lives! Many folks, including young children, have died while waiting for a bone marrow donor who was a match for them. You can read about the myths and facts of being a donor by CLICKING HERE.

It costs about 100 dollars to add someone to the registry and surprisingly you are normally charged $52 to become a registered donor. However, if you sign up now, registration is free between now and June 22, or until the special funding runs out. However, it never costs you any money for the actual donation of stem cells or marrow.

It is easy to join:

1. Confirm you meet basic registry guidelines.
2. Complete the online form and order your registration kit. This step will take about 30 minutes.
3. A special kit will be mailed to you. Follow the instructions in your kit to collect four swabs of your cheek cells and return the kit.

Then, if you are a match with anyone who is waiting for a transplant, you will be contacted and you still have the opportunity to opt out. You will be screened further for any health problems before donating. At any point in the process, you can decline without penalty. Find more information at http://www.marrow.org/ .

Several of my fellow bloggers have written recently about being a marrow donator. Andy from the UK is heavily involved in getting people registered and has written much on the subject. Brian Koffman, a physician with CLL, has a recent entry and Stacie has written a couple of times lately. Their blogs are listed over on the right. Shari Howerton wrote an extremely touching entry titled “Why would anyone not register?” In that entry she also wrote about the donation of her step daughter’s organs after she died in August of 2003 of a severe asthma attack that went into cardiac arrest. I told her I was going to put a link to that on my blog and you can read her entry by CLICKING HERE.

Here are two videos, less than a minute each that might help motivate you. The second one shows how easy it is to take and submit your cheek swabs.

After watching these videos, won’t you please check out http://www.marrow.org/ and see if you might qualify? (There is also a link on that page for information on donating umbilical cord blood. This is another way for stem cells to be harvested for transplant.)

You could be the person who is the only match for someone terribly ill. You might be their only chance at life. You might be that person who can save little Sydney Gavan's life. Won’t you take that step? Be a hero to someone. If you do register for the first time, I would appreciate it if you would leave a comment here on this blog. Thanks.

Deja Vous All Over Again

2009-06-10T00:33:00.006-05:00

Last week, June 2, was Gavin’s first birthday. However, the night before we received a big surprise. I haven’t posted it here because I didn’t know if I had permission yet and I kept forgetting to ask. I got permission earlier this evening.

Cindy, Jonathan and Gavin came over for a surprise visit on Monday evening, June 1st. Jonathan was wearing his special shirt. This is a shirt we saw him wear only once before. In fact, the last time we saw it was about 20 months ago. This time he was wearing a jacket over it, but I noticed it almost immediately. Nanny didn't see it for a long time because she was too busy giving kisses and loving on Gavin. She didn't notice for a while even when Jonathan took his jacket off and was dancing around in front of her. Although Jonathan is taller, the shirt still fits him.

Here is the front of his shirt:

Here is the back of his shirt:

Yep, before Gavin was a year old and before Jonathan is 15, she has another bun in the oven; she’s in a family way; she has a miracle in the making; she’s eating for two; she’s in a delicate condition; she’s on stork watch; she’s with child; she’s up the duff; she’s in a fix; she had a conception malfunction; she’s preggers; she’s crazy! Well you get the picture by now. Even a U.S. congressman could understand that…I think. Actually we are happy for her. She and Corbin are happy too even though this was unplanned and a surprise for them. We know how they feel as our two girls, Cindy and Cheri, are only 15 months apart and Gavin and the new baby will be 20 months apart.

Primarily we are concerned because she had such a difficult time being pregnant with Gavin. Not only was she sick a lot, extremely uncomfortable, contractions for weeks before his birth, but it also was causing her some heart problems. She has already had two heart surgeries and we are praying this won’t cause more strain or damage. We covet your prayers too, if you are so inclined.

Their due date is February 10. They are hoping for a girl this time and have picked out the name, Grace.

Gavin doesn’t know what to think. But grandma assured him that Nanny and Papa have more than enough love for all the grandkids.

The "New Normal"

2009-06-06T01:21:00.004-05:00

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!!

My Grandson, Jonathan

2009-05-30T23:15:00.006-05:00

One of my other grandsons, 14 year old Jonathan, asked me to write a blog entry about him since I had written about James. So this is my entry. Obviously we love all our grandchildren and Jonathan is no exception.

We have a special bond with him too. When he wasn't quite three years old, he spent the summer with us while his mom finished college. She and his father separated and were divorced only a few months after Jonathan was born, so Cindy was a single mom at that time. That is another sad story in its own right. We enrolled him in daycare and I drove him there every morning and picked him up many nights when his nanny didn't.

One of the main memories I have of that time is how smart he was. I bought a Sesame Street program for the computer and that first afternoon he sat on my lap and watched me work the program for a couple of hours, moving the mouse around to play the game. He was fascinated. He didn't want to stop playing when it was time for supper, but I promised him we would come back after supper. I shut down the program completely and we went to eat.

As soon as we finished eating, he started begging to go back to the computer room. I told him we would after Nanny and I finished talking. This was always our time to decompress from the day's activities as we shared what our day was like and what happened at our jobs. Suddenly I realized he wasn't there and it was way too quiet. I went into the computer room and couldn't believe my eyes! Somehow he had opened the program and was sitting in the computer chair and he was playing the game using the mouse! He wasn't just moving the mouse around, he was actually playing the game and making all the right moves to play the game. I quickly got Cheryl and we stood behind him for about five minutes and just watched in awe. I have no idea how he even got the program open or how he knew how to open it. As far as we know, that was his first, but definitely not last time on the computer.

Well, next week he graduates from 8th grade and next school year he will be a high school freshman. That is so hard to believe as it seems like yesterday he was just a toddler. He is still quite smart. He does particularly well in Language Arts class and he reads on a college level according to achievement tests. His only difficulty is math, but he is passing. He wants to be a pilot and will be enrolled in a special program called Physics through Aviation.

Jonathan likes wearing his hair very long, but today he got it cut short. He looks so different, but tonight he said he is getting used to it and likes it (he didn't at first).

Before: During:He could use your prayers has he has been having some difficulty lately in a few areas. He is also in big trouble with his dad (step dad, but they have a true father/son relationship and Jonathan legally changed his last name to match). Earlier this week he didn't completely follow directions and put a large dent and hole in the side panel of his dad's pickup truck. Jonathan was driving the truck with an attached flatbed trailer in their field, which he has done many times. He was doing this as he was told to go dump a load of rocks. However instead of just going straight like he was supposed to, he tried backing up and really blew it, but kept going. The trailer jackknifed and punched the hole in the truck. Ouch! Hopefully a few years, or decades, from now they will laugh about it.

He really is a good kid. Puberty is just not being kind with his emotions. Remember those days?

Can you tell he takes after his grandpa?

Memorial Day 2009

2009-05-24T23:12:00.012-05:00

Memorial Day – Is this just an excuse for another three day weekend? Is it just another holiday moved to a Monday to make it more convenient? Seems like it is only another “special” weekend for sales events as flyers are delivered to my mailbox and “Special Memorial Day Blowout” ads flood my inbox. It is time off work so folks can head to the beach, the golf course, or the backyard BBQ pit. But is that all it’s for?
In 1971, Congress moved Memorial Day from the designated day of May 30, to the last Monday in May. That would be fine if people really remembered what the holiday signifies, but I am afraid that for the majority it is just another three day weekend. At the store today, the check-out clerk asked if we had plans for Monday. I simply said, “I plan to sleep in, how about you?” She replied, “I have to work in the morning, but I will get off early and then head home and get some sleep.” When she asked me, I wish I had added, “I also plan to spend some of the time reflecting on the meaning of the day and remembering the sacrifices of men and women throughout our nation’s history who ensured our freedom.” But I didn’t.

When I was a child, every Memorial Day my folks took all of us kids to visit the local cemeteries and put fresh flowers and/or flags on the graves of our relatives. They also called it Decoration Day. We always walked around and found markers of those who died in war. It was a special day of remembrance back then. When I was a little boy, it was only a few short years since the end of WWII. I was born just three days before the first atomic bomb was dropped on August 6, 1945 and six days before the second one was dropped on August 9, 1945. Then, just five years later, we were in the Korean War. The pain was still raw.

I hope all of you who are reading this take some time to remember all the men and women who paid and are paying even today, the ultimate price while in the service of their country. We should also remember the soldiers of our allied countries who bravely fought and died. We owe each of these men and women so much for the freedoms we have today. I pray for the families they have left behind. For this Memorial Day, like each Memorial Day, the flag in front of our home flies at half mast until noon, as prescribed by the proper flag etiquette for the day.
No matter how we may lean politically, we must never forget the sacrifice so many men and woman paid in answering the call to serve and for honoring their commitment to our country. Each left behind someone who loved them – mother, father, husband, wife, son, daughter, grandparent, aunt, uncle, cousins, fiancée, boyfriend, girlfriend, classmates, or comrades in arms. Friday I attended a Memorial Day service put on by my grandson’s school, Hopewell Middle School. It was an excellent program of remembrance. The High School Junior ROTC color guard posted the colors and a former Hopewell student sang our national anthem as beautifully sung as I have ever heard it and it brought tears to my eyes. A young lady beautifully played “Amazing Grace” on the bagpipes, accompanied by one of the teachers on the keyboard. There was a slide show tribute to our men and women in uniform dating back to the beginning of our country. They then recognized all veterans present and made a very special presentation to the parents of four fallen soldiers – three gold star mothers and one father. It was a moving experience. Then the students presented each veteran present with a personally made card of thanks and brought each of us a drink and piece of cake. I was pleased to see the school recognize the importance of the holiday and teaching their students to honor and respect what those who have gone before them have done.

Here are two special poems and a few powerful photos that capture the meaning of the day.

I watched the flag pass by one day,

It fluttered in the breeze;

A young Marine saluted it,

And then he stood at ease.

I looked at him in uniform,

So young, so tall, so proud;

With hair cut square and eyes alert,

He'd stand out in any crowd.

I thought ... how many men like him

Had fallen through the years?

How many died on foreign soil?

How many mothers' tears?

How many pilot's planes shot down?

How many died at sea?

How many foxholes were soldiers’ graves?

No ... Freedom is not Free.

I heard the sound of Taps one night,

When everything was still;

I listened to the bugler play,And felt a sudden chill;

I wondered just how many times

That Taps had meant "Amen,"

When a flag had draped a coffin

Of a brother or a friend;

I thought of all the children,

Of the mothers and the wives,

Of fathers, sons and husbands ...

With interrupted lives.

I thought about a graveyard

At the bottom of the sea,

Of unmarked graves in Arlington ...

No ... Freedom is not Free!
Author unknown

***************************************************************************Mary McHugh mourns her slain fiancé, Sgt. James Regan, a US Army Ranger killed in Iraq, at Arlington National Cemetery May 27, 2007.

If you Google "James John Regan," you will be able to read much about this young man.

This photograph by John Moore (Getty Images) won 1st place for Feature Photos in the 2007 Atlanta Photojournalism Seminar Contest.

***********************************************************

Choking back tears, 8-year old Christian Golczynski accepted the flag from his father's casket. Photographer Aaron Thompson described this moment as "the most emotionally moving event I may have ever witnessed and may ever witness in my life." (The Daily News Journal)
When asked about his dad by ABC News' Chris Cuomo, Christian said, "He was a hero. He helped our country."
Read the story behind this picture here: http://abcnews.go.com/GMA/story?id=3140316

TAPS

Day is done, gone the sun,
From the hills, from the lake,
From the sky.
All is well, safely rest,
God is nigh.

Go to sleep, peaceful sleep,
May the soldier or sailor,
God keep.
On the land or the deep,
Safe in sleep.

Love, good night, Must thou go,
When the day, And the night
Need thee so?
All is well. Speedeth all
To their rest.

Fades the light; And afar

Goeth day, And the stars

Shineth bright,

Fare thee well; Day has gone,

Night is on.

Thanks and praise, For our days,

'Neath the sun, Neath the stars,

'Neath the sky,

As we go, This we know,

God is nigh.

- Taps -

Quantity or Quality of Life! Which Would You Choose?

2009-05-22T01:03:00.006-05:00

If you had a choice of quality of life or quantity of life, which would you choose? Suppose you had a chance to extend your life five, ten or even more years, would you do it? But wait. Before you say yes to the possibility of those extra years, you must consider what it is you have to do and the various possible outcomes and consequences of taking that chance. In this scenario you have to have a bone marrow transplant, or as it is being more commonly referred to now, a stem cell transplant. Here are three possible outcomes:

First, there is a relatively high chance you will die within the first couple of months.

Second, if you don’t die, you might fight years of battles with problems that could include painful sores, stomach or intestinal problems such as severe intestinal inflammation, mucosal sloughing, severe diarrhea, abdominal pain, nausea, and vomiting, skin sores and rashes, or a host of other possible issues.

Third, after a rough year or maybe two, things return to normal and you start feeling really well and enjoying life – and then you relapse again.

Would you still take the chance?

I have said for a long time, much to the chagrin of my wife, that I choose quality. That is the choice that drove me to my first treatment decision and my choice of the chemotherapy drugs I had for eight rounds. BUT, quality is what I say right now. What about when my health deteriorates to the point I am told there is nothing more they can do for me except attempt a stem cell transplant or die. Will I still say the same thing? If and when that time arrives there will be very little quantity left and quality will have disappeared.

However, what if I am not at that point? Suppose I have only deteriorated to the point of having to take more rounds of chemo, like I am getting close to right now. Then at the end of that treatment cycle, I go into remission, or close to remission and the doc says now is the best time to do the transplant because I am still relatively strong. I would have to undergo very heavy duty chemo to totally wipe out my bone marrow and then get the transplant. What would I do when that choice is presented to me? My doctor at MD Anderson already said that when I start the next treatment he will probably refer me to the transplant doctors to start the process. So this isn’t just pie in the sky speculation.

I have been thinking about this for some time now, particularly because several people I have come to know are agonizing over this very decision of whether or not to go for a transplant. Stacie wrote on her blog, “I have referred to myself as the ‘Self-Confessed Transplant Wimp.’ Just the mention of a stem cell transplant sends shivers up my spine.” Well, I feel the same way and for most of the same reasons as Stacie states. We both have seen way too many people die soon after attempting the transplant. And these were strong, relatively healthy (for those in our situation), and some even young, people. They all had great attitudes going into it. But they didn’t make it. I have also seen some who did make it but continue to have many, many problems due to Graft Versus Host Disease. Basically the body fights itself. One fellow had a transplant six years ago and he still has constant problems with very little quality of life. I have stopped reading his blog regularly because it was so very depressing. Not that he was whining at all, but as he documented the facts of the assaults on his body, I couldn’t help but cringe. He doesn’t post much now, either. But, I still pray for him.

Lest I sound completely negative, there are also those who enjoy successful transplants. Those are the folks who have come out the other side with very few problems. One person I know isn’t a year out and has had no problem of any consequence. However this person still has stated the idea that it could all make a turn for the worse at any moment is an ever present thought.

Theresa Brown, RN, wrote a blog post on the NY Times website that several other bloggers have referred to. She is an oncology nurse and works in a transplant ward. Her post is titled, "When Cancer Treatment Might Kill You." She tells the story of a young man with a 2 year-old son who underwent a stem cell transplant and his body is being assaulted by Graft vs. Host Disease (GVHD). It is well worth the read as it tells about working with transplant patients from a nurse’s perspective.

At one point she writes:

“The good news was we had cured his cancer.
He was disease free — a small miracle — if only he could survive the transplant. If only. But people do survive: the 50 percent who make it through the first year keep on going, knowing that GVHD can strike at any time, hoping for the best."

When the time comes to take the chance, will I make that choice? I don’t know. It will take a lot of prayer and serious thought and discussions with my family.

But I don't want to think about that anymore right now. I need to get ready to go to our new lake cabin in NY in a few weeks. Excuse me while I go put my head back in the sand.

Are You Having Trouble With My Blog? Is There a Malfunction?

2009-05-20T11:18:00.003-05:00

I can see that something strange has been happening in the last couple of days when someone from Indianapolis, Indiana, tried coming to my blog. Today, from 10:48:02 until 10:54:05, about 84 pages opened up for this person from Indiana. Most were only a second or two apart. It happened to this person yesterday, too, and between yesterday and today, this person had 121 entries to pages. Either this person is a speed reader or something is wrong. Something similar happened several weeks ago when my daughter went to read my blog from her iPhone. She said a bunch of pages kept opening in rapid fire and about 50 opened before she could get it shut down. She didn't remember exactly what she did that might have triggered that. Since there is no identifying information that my counter collects, I can't contact the person in Indiana to see what happened.

If you are the person in Indiana or if you have had similar trouble, please let me know in the comments section, or send me an email to: jtw890 @ aol . com (Of course the email address is without spaces. I did it that way so the automatic email collectors wouldn't get it and start spamming me.) If I can get some details, I will get in touch with the Blogger administration folks to see if we can get it fixed. I sure don't want folks getting upset when they are trying to come here for information.

However, if you really are a speed reader and just can't get enough of my fabulous writing, I need to know that too, because even old, fat, bald guys need their ego stroked sometimes.

Way to Go James! Thank You, Hopewell Middle School Teachers!

2009-05-17T13:53:00.010-05:00

(Note: There is nothing about my leukemia or lymphoma in this entry)

Many folks reading this know that one of our grandsons, Jimmy…oops, JAMES (he is 14 now), came to live with us two school years ago. This move was taken out of frustration with the school district he was attending. He is bi-polar and that school was not working well for him at all. Instead of handling discipline internally, they had the on campus police officer handing out disturbing-the-peace tickets and then the child had to appear in municipal court. Even if the judge threw it out, which he did with James, court costs still had to be paid. He got two such tickets the last month he attended school there. He received one for hollering and slamming his books down on the desk when he was angry and another for slamming the door to his class when he stormed out angry. Both actions certainly warranted disciplinary action, but not the way the school handled it. Those were just the last straw in a long string of things of the school not working with him properly. His mom tried to transfer him to a different school even closer to their home and that principal accepted him but the principal of the school he was in wouldn’t release him. During the summer she appealed to the district, but two days before school was to start, they turned down the appeal for the same reason. We agreed to have him move here with us and she withdrew him from school there and had legal paperwork drawn up for us to become his legal guardians for the school.

The first year he was here things went very well…for the first half of the school year. He even joined the football team. He practiced hard, but didn’t get to play in a single game, which was very disappointing to him. Then over Christmas and into January he had a huge growth spurt and his medications went out of balance and he started having major problems with his anger and his attitude. He would be like Dr. Jekyll and Mr. Hyde; calm and polite and then something would set him off and he would go into rage. He wouldn’t even remember most of what he said or did during those times and it was often very bad. He was losing his temper often both at school and at home. His psychiatrist kept adjusting and adding and subtracting medications, but nothing was working. He was suspended multiple times for fighting, cussing teachers, and various other misbehavior. The school really was trying to work with him and I can’t fault them at all. The assistant principal and I became well acquainted and I hated to get the phone calls from her because I knew James was in trouble again. He was even suspended the last full week of school. Somehow he managed to pass, but it was such a horribly stressful time on all of us. We just didn’t see how we could do it another school year but we were also very afraid he was heading down a path straight into the criminal justice system. His doctor continued adjusting medications and his mom searched and searched for a Boy’s Ranch or some residential program that would take him. She couldn’t find anything because of his diagnosis and history of violence – the fights he had been in. One medical-type program would take him, but it was only for 90 days and it was going to cost over $25,000!

But then we noticed over the summer that he was calming down and not having the anger outbursts. Cheryl and I talked and prayed about it a great deal. We decided we would try for one more year. We drew up a contract for him that listed out all of our responsibilities and what we expected of his behavior. We told him that if he didn’t live up to this agreement he would have to move back home and back to the school he so intensely disliked. He agreed.

This school year has been fantastic! Every meeting I have had with his teachers they have praised him for his behavior, how hard he tries, how polite he is and how he is one of the students they can send on errands because they know they can trust him to go do it and come right back. One teacher said she had read his file and knew of his reputation and was hesitant to have him in her classroom. She said she thought maybe they had the files mixed up because the boy she saw was nothing like the kid she read about.

Last fall he again joined the football team, practiced hard and played on the defensive line in every game for every defensive play. He is now close to six feet and weighs over 200 pounds. James has also worked hard on his academics, especially his reading. Texas has state exams students must pass at certain years in the spring in order to move on to the next grade. This year he had to pass the reading exam and math exam to move into high school. We figured he would pass math, but we were concerned for the reading, even though he would get three tries, including one last try over the summer. At the beginning of the year, he tested at a third grade reading level. He was in remedial reading with a super teacher, Ms. Lisa Smith, who taught him various strategies to use when reading to increase his comprehension. Last month was the reading TAKS test. He came home all excited because he was sure he did well and thought he might have even gotten to the “commended” level on the test. We were hopeful, but also afraid he was going to be hugely disappointed. Actually, Cheryl was more confident than I as she had been working closely with him with reading (I help more with math). She would read his books ahead of him, have him read a couple of chapters and then she would quiz him about what he read. She could see that his comprehension was rapidly improving. A few days after the exam, I had a progress meeting with his teachers and relayed what he said after taking the exam. They were also concerned he was going to be disappointed and wanted me to stress to him that he still had two more chances to pass the test. About a week after that, James called from school. The test results had come in. He had only missed three questions! He was one away from the “Commended” level. We were all so excited. His teachers were excited and I think perhaps shocked. He kept saying he knew he did well and he used all his strategies he had been taught, even though he didn’t have to. He taught me not to doubt him.

We have seen him work hard on his behavior here at home, too. Things that would set him off last year, we see him stop and think things through. A couple of times we have seen him be quiet and just simply withdraw from the situation so he can calm himself. For the entire year there was only one time he became angry here at home and it was one morning with me. He didn’t go into any rage, but did leave angry – like any normal 8th grade student might. That night when he came home he apologized to me.

So why am I telling you all this? Obviously we are very proud of him. Last week we got a letter in the mail that informed us he was going to be getting an award on Friday night, at a ceremony before the school dance. He had already asked if he could go to the dance and we had given him permission. When we asked him what kind of award, he said he had no idea. When he asked his teachers, they told him he had to wait and find out. We were excited but also a little skeptical. We thought it might just be a certificate that all kids would get. James even said he wanted to get a suit to wear. I had a jacket and shirt that fit him and we bought him a pair of matching pants, new tie and dress shoes. We were hoping he wasn’t going to be disappointed.

When we got there we were handed a program and it had a list of honorees. We could tell it was not every student, but the program was “Academic Achievement Awards.” Hmm, we still couldn’t figure it out because we know James’ grades aren’t that high. He is passing, but certainly not all A’s, or even close. As the program progressed they announced what the next awards were and then we pretty much knew that was how he was being honored. He received the “Rock Star/Shooting Star” award. It was for the most improved male student! His team of teachers had voted for him for this award. I thought I would pop my buttons with pride. How wonderful for his teachers to recognize the great effort he has been putting forth this year. I doubt they will read this, but I would like to recognize the team of teachers he had this year who worked so well together to help him.

Reading Title 1 – Lisa Smith
Mathematics – Rose Holly (also his advisory teacher who helped keep him organized)
Language Arts – Heather Byrd
US History – Elizabeth Tagge-Quigg
Science – Debra Manganaro And two teachers not part of the organized team, but who also helped him:
BCIS (computers) – Matthew Perez
Boys Athletics – Joshua Barnes

Also a big thank you to his counselor, Mike Mohr and mentors Steven Gradney and Jami Evans. Mr. Gradney wasn’t even assigned to him and yet he went out of his way to help and encourage James. A very special thank you to assistant principal Cynthia Ottmers, who is the kindest lady I ever met who can hand out sanctions to the kids and have them understand she is really doing them a favor! She really cares for her kids. There are many others who played a role in James’ success including last year’s teachers, the office staff, the school nurse and the attendance lady, Tonie Moya and some I have probably inadvertently omitted. All of these folks are under the very capable leadership of their principal, Mr. Anthony Watson. Thank you, thank you, thank you all!

Of course, James is coming back to live with us again next year as he begins High School. I have to have someone to mow my lawn. Congratulations James, for your great effort and your accomplishments this year.

Happy Mother's Day

2009-05-09T23:46:00.007-05:00

(Note: There is nothing about my leukemia or lymphoma in this entry)

There are several special mothers in my life, but four are particularly close to me – my own Mom, my wife, and both my daughters.

I wanted to write something special to honor the mother of my children who taught the girls, through example, how to be great mothers in their own right. And I wanted to honor my own mother who is 94 and just moved into a nursing home this year. I had the brilliant idea of writing an original poem. I figured nine or ten stanzas would be pretty good. I would write one for each of them. Umm, not such a brilliant idea. I now remember why I hated writing poetry back in high school, almost 50 years ago. I can’t do it! After many false starts, here is the miserable result before I finally gave up:

TO MY WIFE, CHERYL
You are the Mother of my children
Who now have children of their own.
So now you are a grandma
From the seeds of which we’ve sown.

You showed them how to do it
How to love without condition.
And now they show that kind of love
To their own with such tradition.

TO MY MOM

Roses are Red,
Violets are Blue
Mom you are so great
And that is why I love you!

Umm, can you tell it was late by the time I got to the second one?

However, my feeble attempts did cause me to think about both of these wonderful women and how much they mean to me. I wish I knew how to put those thoughts into meaningful poetry. I decided to see if there was anyplace on the web I could go for inspiration. I figured I couldn’t directly copy something without permission, but perhaps it would get some of my own creative juices flowing. What I found was a site with poetry that actually encouraged you to cut and paste and put into cards for your mom. So here are a couple of the poems I found meaningful.

This first two are for both my wife and my mom:

"Happy Mother's Day"

“Happy Mother’s Day” means more
Than have a happy day.
Within those words lie lots of things
We never get to say.
It means I love you first of all,
Then thanks for all you do.
It means you mean a lot to me,
And that I honor you.

But most of all, I guess it means
That I am thinking of
Your happiness on this, your day,
With pleasure and with love

By Kay Hunt

*********************************************

No Love like a Mother's Love

There is no love, like a mother's love,
no stronger bond on earth...
like the precious bond that comes from God,
to a mother, when she gives birth.

A mother's love is forever strong,
never changing for all time...
and when her children need her most,
a mother's love will shine.

God bless these special mothers,
God bless them every one...
for all the tears and heartache,
and for the special work they've done.

When her days on earth are over,
a mother's love lives on...
through many generations,
with God's blessings on each one.

Be thankful for our mothers,
for they love with a higher love...
from the power God has given,
and the strength from up above.

By Jill Lemming

This last one is especially for my Mom and for all Military Moms who may read these words. They are special ladies. Although I returned home safe, many sons and daughters have not. When I joined the Air Force, my Mom cried. When I first went overseas, my Mom cried. Each time after when I left to go overseas, Mom cried. I didn’t understand. That is I didn’t understand until our oldest daughter first moved away to a different state to join her military husband and then I understood just a little. However, when my youngest daughter called me from Dallas and told me she was taking her physical and was enlisting in the Army, I truly understood.

MILITARY MOMS

This year on Mother's Day
We should think of offspring lost
And Mothers of all those Troops
Who paid the ultimate cost.

They've watched Sons and Daughters
Sent off to a foreign land
To fight wars and give their all
In some conflicts so ill planned.

But no matter what the reasons
They've always stepped up to the line
To give their lives for Freedoms
Enjoyed by all of yours and mine.

We must Honor all those Mothers
Of all those who have Served
And Sacrifices that they made
With our, "Thanks!", so well deserved.

It takes a very Special Lady
To let Her Child go off to War
Or just to join the Military
With the pride and fear and more.

There's too many Gold Star Mothers
And if you might know of one
Please send Her a special wish
To praise Her Daughter or Son.

Military Moms are the Greatest
With a strength beyond compare
Who hope and pray their loved one
Comes Home safe, from over there.

So, let's keep them in our thoughts
And hope their prayers come true
All those Moms and all those Troops
Who stand Strong and Proud, and True.

By: Del "Abe" Jones

God bless you Cheryl and Mom and Happy Mother’s Day! Thank you both for being terrific mothers! Happy Mother’s Day to all moms reading this. You have the most important job in the world.

Thanks A Lot, Carly!

2009-05-06T17:18:00.003-05:00

Well, I read Carly’s Blog (Just Carly) and she tagged me. Apparently this is a game a bunch of blog-writing ladies play. They make up lists of things, tag each other and then the tagged lady must complete the list on her blog. Since I am home all day, I think Carly has made me an honorary blog-writing lady. She actually tagged me twice before. Once last November but I pretended I didn’t see it and I have felt guilty ever since. Is that a sin? Is it a lie if I didn’t actually tell her I didn’t see it? The other time was back in October and I really didn’t see that. I did a search of “John” on her blog and found it. So no guilt and no sin involved in that one. But now I have seen all three. In fact, I was going to ignore them again, but I might be awake all night worrying. Carly goes to my church, even though I have not met her yet, and she makes nice comments on this blog. Perhaps I have subconsciously avoided meeting her because I am feeling so guilty for not completing the tag lists. Guilt may negatively affect one’s immune system. I don’t know that for sure, but I can’t take anymore chances. So, Carly, here are my answers from the latest tag and also from the two tags last year. I am doing this so I can sleep at night.

8 Things I Look Forward To
1. All our grandchildren graduating from college – the last one in 21 more years.
2. Our grandchildren all having good jobs they are happy doing.
3. Growing older…and older and older.
4. Leaving on vacation June 22 to our cabin in NY.
5. My wife’s retirement so we can spend all summer together at our cabin in NY.
6. This school year to be over.
7. A certain situation to be resolved in a good way.
8. Heaven – but I am willing to wait

8 Things I Did Yesterday
1. Got my grandson up, made him breakfast and got him off to school.
2. Watched Ellen.
3. Took a nap.
4. Read Blogs, email, visited CLLForum and CLLCfriends sites.
5. Took a nap.
6. Watched TV.
7. Took a nap.
8. Fixed dinner then took a…never mind. (How sad)

8 Things I Wish I Could Do
1. Not need a nap.
2. Write entertaining Blog entries – always.
3. Go on a cruise to Alaska.
4. Go to Hawaii.
5. Ensure everyone I know makes it to heaven.
6. Ensure my wife, kids and grand kids are always healthy and happy.
7. Cure all cancer.
8. Have to call the doctor after four hours. (Think about it.)

8 Shows I Watch
1. Ellen
2. The Mentalist
3. Criminal Minds
4. NCIS
5. CSI NY
6. CSI Miami
7. CSI Crime Scene Investigation
8. House

8 Bloggers I Tagged
If you're reading this......TAG!

From when I was tagged last November:

8 Shows I Love to Watch:
1. Flashpoint
2. Law and Order
3. Law and Order: Criminal Intent
4. Law and Order: Special Victim’s Unit
5. Lie to Me
6. Bones
7. Southland
8. Numbers

8 Restaurants I Love:
1. Johnny Carino’s Italian Restaurant
2. Texas Roadhouse
3. Logan’s Roadhouse
4. La Margarita
5. Fuddruckers
6. Cracker Barrel
7. Luby’s
8. Little Red Wagon Hamburgers

8 Things That Happened Today:
1. Got my grandson up, fixed him breakfast, got him off to school.
2. Watched Ellen.
3. Took a nap.
4. Read email, Blogs, visited CLLForum, CLLCFriends sites
5. Went out and edged the lawn – aha, fooled ya, didn’t I?
6. Sat in the chair and caught my breath and cooled down and caught my breath -- for an hour.
7. Got a shower
8. Wrote about 8 stupid things I did today and yesterday and all the crime shows I watch and the restaurants and my hopes and my…Oh, wait, you know all that, don’t you? …and then took a nap.

8 Things I am looking forward to:
1. – 8. See above from the other list

8 Things On My Wish List:
1. My grandson to learn how to edge the lawn
2. A flat screen LCD HDTV
3. This laptop to stop acting wonky
4. A new desktop computer
5. Delay more chemo for another year
6. Not to have to do too many repairs on our cabin in NY
7. Spend many retirement years with Cheryl
8. Finally, I wish I would have to call the doctor after four hours

8 People I tag to do this on their blog:
I’m not spreading the guilt this time

From when I was tagged last October:

Carly tagged me to blog about my hubby's favorite things. so here goes...
Umm, umm, umm, I was in the military. Don’t Ask, Don’t Tell

OH, OH, I just read the rules of this tagging business:
The rules are:
1. Mention the person(s) that tagged you. (I was tagged by Carly)
2. Complete the lists of 8's.
3. Tag 8 other bloggers.
4. Tell them they have been tagged.

Look at rule #4. Carly didn’t tell me! I bet she tagged a different John. John Smith, or John Doe or John McCain. Good grief. I probably wasn’t Tagged!!!!! All those months of feeling guilty for nothing. Well, after all this work I am posting it anyway. And I won't need to avoid Carly at church.

More Good News -- Doing the Happy Dance

2009-05-04T14:44:00.005-05:00

I had my oncology appointment this morning. My IgG levels really held this time and were 826! The point of IVIg infusions are to get the level to 700 or above. From 723 to 1865 is considered the normal range at my lab. For over a year, I had to have this infusion every four weeks. Then my levels started holding longer, except for one time, and lately I have been going six weeks. This is amazing that they are this high after six weeks. Therefore, my scheduled infusion for today was canceled! HOORAY!

I have a love/hate relation with IVIg. I love it because it boosts my immune system and keeps most infections away. I went from having at least one new infection a month to only having a couple in a year and a half. I love it because it makes me think of all the wonderful people who took time out of their busy lives to donate blood - it takes 8,000 to 10,000 donors to make enough for ONE treatment. How humbling is that? I hate it because it gives me headaches for days after, although they are not as severe and as often as they were when I first started. I hate it because it is so expensive -- not for me, but for my insurance company. I hate it because it is often in short supply and I wonder if I am taking it away from someone who may need it more than I do. I also hate it because powerful steroids are administered along with it. They keep me awake that entire night, make me gain weight, and make me feel weird for several days -- weirder than my normal weird that is.

Maybe love/hate is too strong a term. How about dislove it? OK, dislike! I really do have a love/dislike relationship with IVIg. No, no... like/dislike that's it. OK, I'll stop now. It just didn't seem right this was a short post.

Put the Horse Back in the Stable

2009-04-28T00:35:00.003-05:00

This will be a relatively short post – well, short for me. Haven’t been many of those in the last 108 posts! I had my blood drawn in preparation for next Monday’s oncology appointment. I have two nice black and blue marks in the crook of my arm as he had trouble hitting a vein. He dug around a lot. I may recommend him to my son-in-law, the oil driller. I told him to use the port in my chest and he said they don’t like to if they don’t have to because there is more danger of introducing bacteria and causing an infection. So instead he just kept wiggling the needle around inside and then moved it over a couple inches and wiggled some more until he finally got it. I hope when I am out and about somebody doesn’t look at my track marks and stop me and ask where they can score.

I waited for my results and prayers were answered. They were very good! My levels have been climbing fairly rapidly since December, but in the last five weeks they barely moved at all and a few even got better. White count jumped only 500 (.5). Percent of lymphocytes dropped to 83.1%, down from 84.6% last month (normal is 19% - 48%). Absolute Lymphocytes only climbed 100 (.1), which is negligible. Lymphocytes are what were causing me the most concern. Granulocytes are still low, but have climbed .4 and are almost up to normal. Platelets climbed to 128, not far from low normal. I do wonder if the platelets rushed to the crook of my arm to stop the bleeding from his first exploratory dig. I don’t know if it works that way or not. Red cells were up to normal and everything else on the WBC was in the normal range! This is a crazy disease, but I’ll take these results for sure. I won’t have the results of my IgG level for a few days, but if they stayed up, I will be able to skip my IVIg infusion next Monday. That would be icing on the cake!

Just like when the counts are moving rapidly in the wrong direction, we can’t put much stock in one test, but rather look at the overall trend. However, if this trend continues and I remain stable for the next couple of tests, this intermission just might last a while longer and we can return chemotherapy to the back burner. Putting stock in this can’t be any worse than what our 401k stocks have done in the last two years.

This happened a little over a year ago when things had been progressing and then suddenly stabilized. That lasted for about ten months or so. I’ll take it again.

I need to order some more hay. I could be bedding down in the stable for quite some time and I need to be prepared. If nothing else, I can always hide under it if the swine flu invades our area. Pigs don’t eat hay, do they?

Thank You Mr. President – I Have Been Stimulated – A Little!

2009-04-25T10:33:00.004-05:00

Wow, I couldn’t believe it, President Obama must have read my Blog, I thought. On my statistical feedback page I didn’t see Washington D.C. listed, but I bet he was one of my visitors listed as being from an unknown location. Certainly the President must travel around the blogosphere in stealth mode. National security, you know.

Regular readers will remember my post earlier this month (click HERE to read) where I put forth my personal stimulus package proposal so I could hire maid service to take care of my dusty house. Well, one day this week I brought in the mail and tossed it on the counter in the kitchen without looking at it and went and did something important. Not sure what – perhaps a nap, deep contemplation about needing to dust, or trying to decide if I want to join Tweeter or just stay a twit. I know it must have been important. Later that afternoon I went to the kitchen to start dinner, or get a cookie, don’t remember which, and there on the back of one of the letters was stamped “IMPORTANT: Economic Recovery Payment Information.” I almost passed out from excitement as visions of happy maids dusted in my head.

OOPS, my wife, reads this Blog. Here is the real vision of happy maids in my head, dear:

Anyway, I tore it open, expecting to see my $75,000 check so I could hire my maid service for the next ten years. After all, I had to bend and tear off both sides at the perforation. It had to be the check. My heart sank when I saw there wasn’t a check. The happy maids in my head stopped dusting and just stood there, waiting expectantly. My heart began to sore again as I my eyes moved to the bolded statement in the second paragraph: “You should receive your one-time payment by late May 2009. You do not need to take any action to get this payment.” I whooped and hollered and danced around the room…well limped around the kitchen. The maids went crazy, dancing around with their feather dusters and my ears were tickled till I giggled.

Finally after two limps around the kitchen, I had to sit down, catch my breath, look up the happy maids’ phone number in the yellow pages, and finish reading the details of the letter. The first sentence in the first paragraph said, “Good news!” They got that right! I was smiling ear to ear – even while huffing and puffing. But wait…what’s this? What did that say? I had to read it twice to be sure.

“The economic recovery bill that President Obama signed into law in February 2009 provides for a one-time payment of $250 to Social Security and Supplemental Security Income (SSI) beneficiaries.”

What? $250? Only $250? And EVERY old person is getting this? I’m not special? And Congress will probably raise my taxes next year by $350 to pay for it. The extra $100 to cover mailing and handling with an extra piece of bacon thrown in.

The maids in my head stopped dancing and dusting and sat down and started smoking cigarettes. At least I think they were smoking because I thought I saw smoke coming out my ears.

I went over to the coffee table in the TV room and started doing the math in the dust. I finally decided I could have the maids in one time in May, one time in July, skip cleaning the guest room where only my granddaughter Holly occasionally sleeps, and still be able to tithe $25. Not the weekly service I was looking for, and maybe only two maids instead of three will show up, but still better than the dusting I am doing now every three…or four…or five…months. Maybe in August or September I will start chemotherapy again and I can play that card as a reason for not dusting. That should last six to eight months, at least.

Side note: I had my granddaughter, Holly, over for the day two weeks ago on Spring break. I bribed her. She dusted the three main rooms and then I took her to the movies that afternoon. We saw "Hanna Montana: The Movie." Please don’t tell anyone. We were walking out and she said to me, “See, Papa, I told you that you wouldn’t be bored. That was great, wasn’t it?” The usher standing at the door thought it was very funny. The next day I dusted our bedroom and most of the places she missed. Cheryl pointed out the places we both missed. Holly and I missed the coffee table in the TV room. And several other places. Holly will be dusting the guest room in May and July. I’ll keep the door closed.

I haven’t lost total hope yet. Perhaps when I get back from my monthly blood test Monday there will be an important letter from the White House in my mailbox. I can picture myself bending and tearing the perforated sides and a check for $75,000 will flutter into my hands. I sure hope so. So does Ellen. So do the poor happy maids and their little starving children.

How Did YOU Find Me?

2009-04-20T14:06:00.004-05:00

In September 2007, almost two years after starting this Blog, I added a counter to see if anyone was actually reading this and if so, how many. I started off by setting the count at 100 because I didn’t want to be embarrassed if it sat at zero, or at least under ten, for months. There is an option to put a blocker cookie for myself so it won’t count me every time I come to the blog or post to it. I contemplated not blocking myself so if the number stayed low I could keep visiting myself to get the count up. Hmm, that almost sounds illegal. But I did set the blocking cookie so my visits don’t count.

I am amazed, and humbled, at how many people are reading, well, at least visiting this site. As of earlier this morning, 15,000 visits in the last year and a half! As time goes by, the number of daily visitors increases. I am now averaging 47 visitors a day and Easter Monday it was 85. Because so few folks actually leave comments, this is a way for me to know if people visit. Of course, in comparison to some of my fellow bloggers, this is a relatively small number, but I am still amazed. (Perhaps some of my fellow bloggers keep visiting their own Blog to drive the numbers up – HA!) To keep track of the numbers, I chose the free version of StatCounter. You can see the actual count at the bottom of the far right column of this Blog. The free version limits the information it gives me to the last 500 visitors, but it still tells me much.

Although I can’t collect personally identifying information (and I would have no need to do that), there is a lot of information I can see. For instance, it shows the country and often the state and city visitors come from – although it is not totally accurate as it depends where the Internet provider’s server is located. When I first started using the counter, there was someone from South Africa that checked in fairly often. My youngest daughter would read something I had written and then complain that the person in South Africa knew about it before she did. Out of the last 500 visitors right now, 279 are from the USA. The others, in alphabetical order, are from:
Antigua and Barbuda,
Australia,
Botswana,
Bulgaria,
Canada,
China,
Denmark,
Egypt
France,
Germany,
Ghana,
Hong Kong,
India,
Ireland,
Israel,
Italy,
Japan,
Malaysia,
New Zealand,
Philippines,
Poland,
Republic of Korea,
Russian Federation,
Saint Kitts and Nevis,
Saudi Arabia,
Serbia and Montenegro,
Sweden,
Taiwan,
Ukraine,
United Arab Emirates,
United Kingdom,
and… South Africa! There are also 16 visitors who are from unknown places, somehow surfing in stealth mode, I assume. You can’t imagine how humbling and overwhelming it is for me to realize that people from all over the world have read or are reading my Blog. I am ashamed to admit there are two or three of those countries listed I would have difficulty finding on a map.

StatCounter also tells me how folks get to my Blog. Many come from clicking links on other sites and Blogs such as ACOR, CLL Forum, CLL Christian Friends, and many of the Blogs listed here in the right column, along with a few others not listed. Many just come here directly because they type in (or have bookmarked) the address. It tells me there was no referring link.

However, a great many, almost half, arrive as a result of searches on Google and other search engines. These are the folks that give me pause because I realize folks are coming here looking for answers and information to help them with their disease. All I can do is write about my experience and sometimes give links to other places with more help.

99.9% of the searches have to do with CLL or SLL. I know this because I can actually see what is put into the search engine and it also tells me which page, or post, the visitor was directed to. The most popular, by far, other than the normal home page, is the post on itching because so many folks are searching for answers concerning itching, rashes, and swelling with CLL. Just about every itching body part with CLL has been searched. Of the last 500 visits, 128 were directed to my post about itching. I just wish I had definitive answers for those seeking itch relief other than to say go to a dermatologist and get checked out. In my case I suspect my first huge bout with itching and rash was a delayed Rituxan reaction and then the last big bout may have been from formaldehyde in new jeans. The second most popular post is one I wrote back in 2005 about treatment options. Until I wrote the itching post, the treatment option post was consistently the most popular. The fatigue post and the first time I wrote about IVIg infusions are also popular.

Some of the search terms are heartbreaking as people are dealing with serious issues for themselves or their loved one. Some search terms are funny, and a few searches I wonder how they got directed here. I have been thinking of writing about this subject for several months, so I have been collecting the search terms used to get here. Let me give you some examples of the more unusual ones, typed just the way they were put into a search engine, followed by my comments:

Cinnamon/CLL – well that is a different flavor of the disease, I guess. This was searched for several times.
Leukemia back pain burning tingling feet vomiting – the poor fellow is really ill if his feet are vomiting.
I’m a guy I want to modeling – and you are looking to me for advice? Have you seen me???
CBC done six months ago could I still have leukemia – Sure could, my blood test was done three weeks ago and I still have it.
How much pain would you suffer to get to heaven – you don’t have to suffer pain to get to heaven. See my Easter post from this year.
Lower back itch spleen – That is a problem. Your spleen is up front, on the left, protected by your ribs – unless it is enlarged from CLL and then it extends below your ribs.
CLL oxygen exercise – you are asking ME about exercise? You really don’t know me, do you?
Numb butt – Call me any more names and I will have to ask you to leave.
Numb scalp leukemia – Well that is better than the last one.
Lymphocytic leukeamia in horses – Well, I have been called one particular end of a horse, but I don’t know about this.
Can sleeping problems, bruise type mark, dry lips be indicator of leukemia? – I guess so, but maybe you are snoring with your mouth open and your wife keeps punching you.
Unexplained painful spots in mouth before my period? -- Umm, not my area of expertise.
Golden heart god saw you getting tired 1996 – Is LSD still popular or are you on something else?
The lymph glands in my neck really hurt and a pin when touched on my back in between my shoulder blades what is this a sign of? -- That someone is sadistically torturing you with pins.
Stress test radioactive grandson – WHAT? If my grandson was radioactive, I would need a stress test, too.
Small lymphocytic lymphoma how to make it worse – Why, oh why would you want to make it worse? I am trying to make it better!
Rituxin made of ground up rats? -- Ewww. Not really. But Rituxan is made somehow with mouse proteins or Chinese hamster ovaries – really.
Los vagas cll girls – Man, I bet you were disappointed when you got to my blog. It would help if you learned to spell or at least watch the typos.
The wonderful, fabulous author John Wagner who is loved and adored by his wife and kids and grandchildren – OK, OK, I made that one up myself.

I have a lot more examples, but you get the idea. The sad thing is because I have used a lot of different terms in this post, many more folks will be directed to this page. If you are one, I hope I didn’t make you angry as you searched for legitimate answers.

For those searching for CLL/SLL answers, let me give you a couple of tips. First of all, be sure to check out Chaya’s sites. If you are newly diagnosed, start with http://www.clltopics.org/ and on the main page look over to the right for the link for newly diagnosed. There is a wealth of information there. Second, search Dr. Terry Hamblin’s Blog HERE. David Arenson’s Blog HERE is also a wealth of information. Then, try a search of CLL sites, HERE. Enter your terms and it will search many CLL related sites. If you see something in one of my posts, look at the labels at the bottom of the post and click a word and all posts related to that label will pop up. Finally, you can always do a general search my Blog and see if I have written anything helpful. Look up at the top left of this page. Type your terms into the box and click on “SEARCH BLOG.” Of course, if you are not already a member, I would invite you to join http://www.cllforum.com/ and the Christian site http://www.cllcfriends.com/. Both of these sites are wonderful sources of education and support. http://cll.acor.org/help.htm is another information and support place to go and join a discussion group (on the help page look over on the far right for the link on how to join). In all three you can ask your questions and members will try to help you out. If nothing else, you will find folks who know what you are going through. I also have some other links and blogs listed here over on the right that can be very useful to you.

Although I know folks are visiting, I also enjoy reading your comments. So if you have time when you visit, take a moment and say howdy by clicking on the comments link at the bottom of the individual post. I promise I won’t make fun of you – unless you are the one looking for “los vagas cll girls.”

We Have a Contract!

2009-04-14T22:46:00.009-05:00

Regular readers might remember that when we went to upstate N.Y. at the end of last October, we looked at various lake properties, hoping to purchase a small place to spend the summers. Well, this week, five and a half months after starting the process, we have an accepted offer on a cabin. We had been negotiating on the one property but three months ago, when we put in our final offer, and said it was final, it was again countered with a higher amount. We were not that far apart, but it really was our final offer because there are a lot of improvements that have to be made. So negotiations were cut off.

There was another property I was interested in on a nicer lake, but the lot wasn't as nice and it was across the road from the lake. The price had dropped ten thousand dollars, too. However, Cheryl wasn't convinced that was the one for us. So we did nothing. Last week, that property sold and we were out of options. We planned to go back up this summer and start looking again.

Last week, Thursday, I talked to our agent and the folks who had been rejecting our offers decided to accept. They had recently had a few offers fall through because folks couldn't get the financing. We already had that part accomplished. We faxed in our contract offer on Friday and they accepted yesterday. Yesterday afternoon we closed on our home equity loan to pay for this property. Now we just wait for the lawyers to do their thing and we will do a long distance closing in a couple of weeks.

The cabin is three bedroom, one bath, and comes almost fully furnished and includes a rowboat and paddle boat and a good sized storage shed. The lot is 105 feet road frontage, 208 feet deep and 100 feet lake front and is on Lake Gerry, a small pond/lake just outside Oxford, N.Y., not far from Binghamton. It is fairly centrally located from most of our relatives in N.Y. My mom is about 40 miles away and one of Cheryl's sisters is only 12 miles. New York City where my youngest brother lives, is a little less than 200 miles. All other NY relatives are within sixty miles.

We are planning to go up at the end of June for two weeks and be back just in time for my MD Anderson appointment July 13. We will take a small U-Haul with a couch, dresser, table and chairs we have here. The only furniture they are taking out of the cabin is the table, but the bedroom furniture is a little sparse and the futon in the living room will be replaced with an extra sleeper sofa we just happen to have here. Starting next year, Cheryl will be retired and we plan to go up each summer from the end of May to about the beginning of September. We are excited.

As you know, my leukemia has been revving up into higher gear lately, but the last couple of weeks I really feel like I might be stabilizing again. I even think my neck nodes might be down a bit. Maybe it is just wishful thinking, maybe not. I won't know for a couple more weeks until the next blood test. Ideally, if I have to start chemo again, I can do it around September and be done with it by next February or March. Spend those next couple of months recovering and going into remission in time to spend a nice restful summer in upstate N.Y. That is our prayer, anyway.

Here are a few pictures we took last October of the property that soon will be ours:

I wonder how much I can get on EBay for that pink plastic flamingo and plastic palm tree in the living room? I hope Cheryl can bear to part with it.

He is Risen! He is Risen Indeed!

2009-04-12T23:51:00.006-05:00

"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.

Mr. President, I Need to be Stimulated and I Have a Proposal for You

2009-04-06T00:42:00.005-05:00

Dear readers, are you feeling stimulated yet? I’m not and billions of dollars have already been spent. In fact, one article I read said that President Obama spent one billion dollars a day during his first fifty days in office. That is $50,000,000,000 in fifty days. And remember, many more billions in bailout were already spent before President Obama took the reins of power. And those in Washington have been throwing around billion and trillion dollar figures lately that make my head swim. Now I don’t know about you, but I really can’t comprehend those numbers because they are so far outside my reality. And if you start talking trillions of dollars, my eyes just glaze over.

So, let’s go back to the $1,000,000,000 a day figure. Let’s try to make that figure a little more comprehensible. That amount works out to $41,666,666.67 an hour, rounded to the nearest penny, of course. OK, so over forty one and a half million dollars an hour is closer, but still outside my reality and my ability to truly comprehend that amount of cash. My first real job loading trucks in a shoe factory warehouse, I earned seventy five cents an hour.

So let me try again. That amount works out to $694,444.44 spent every minute of every day for the first fifty days. Nope, still don’t get it. My first year in the Air Force, I earned $1,200 for the entire year!

One more try. How about $11,574.07 spent every second of every day for the first fifty days? Yep, I have earned that much before. But of course it has taken much, much longer than a second. In fact, if I save every penny of my current Social Security Disability pay starting right now, it will only take me until near the end of this December — eight and a half months away — to come up with the amount spent every second of every day.

So, what do I propose? If you remember, in my post of March 24, I mentioned that I really hate to dust. Earlier tonight, Cheryl said to me that if I didn’t do anything else tomorrow to please vacuum the carpet and do some dusting. I told her I vacuumed on Friday. She rolled her eyes and said something about calling in the carpet cleaners. I didn’t bother telling her I already dusted just before our Christmas party. In fact, I didn’t have a calculator handy for all those calculations, so I just used my finger in the dust on the end table here next to my recliner. But as usual, I digress. My proposal, Mr. President is to send me a small amount of stimulus money and I will hire a maid service!

Now don’t laugh, Mr. President. I bet you use maids in that big old white house of yours! I can’t really picture you or Michelle dusting. Unless maybe you make the kids do it? Naw, I doubt it. Not only would you be helping a poor old man with Cancer (yep, not too proud to play the “C” card when necessary), but you would be helping three ladies every week to put food on their table to feed their hungry children (the mental picture of starving kids helps, too). You see, my daughter once bought us maid service as a Christmas present and when they came they did a pretty good job and there were always three of them. Not only will they dust, but they will vacuum, dust, mop the tile floor, dust, make the beds, dust, clean the toilets, dust, clean the tubs, dust, clean the shower, dust, wipe down the appliances, and dust. In the end, you will make an old man with CANCER very happy, make the wife of the old man with CANCER even happier, make those three maids happy, and fill the bellies of those poor starving children of the maids happiest of all. Wouldn’t you like to see the smile put back on those children’s faces, Mr. President? And, we will be stimulating the local economy because those maids will remain employed and they will buy gas, cleaning supplies, and also spend their money at the local grocery store for those poor starving children. Another benefit you might not think about, but is very real, you will be giving me and my dog more time to watch my favorite morning program, “The Ellen DeGeneres Show.” Yes, my dog, Snickers, comes running to my lap as soon as he hears the music for the beginning of the Ellen show. He knows he will be petted for an hour. By giving me time to watch her show, her ratings stay up and many more people remain employed. Also, I laugh during her show, and that improves my immune system, makes me live longer, and puts more money into the pocket of the medical community as they keep treating me to keep me alive even longer. The possibilities of the far reaching stimulating effect of my proposal are just mind boggling. Why, I might even have time to get hooked on soap operas and I hear they are in real danger of failing.

And how much would this stimulus package cost? Well, like many of my corporate counterparts, I’m not too sure, but just let me pull some figures out of my … um … out of my hat. Let’s say they charge me $100 a week to come one morning each week. But to be safe, we will make it $150. (Congressmen always throw in a little extra to be safe, don’t they?) So, for 50 weeks of the year (I plan to give them a two week vacation), that comes out to … just a minute, I have to go over to the other dusty end table … that comes to $7,500 a year.

I believe in giving my employees job stability so I want to hire them for ten years. Besides, it makes the math easier to multiply by ten. That works out to just over SIX SECONDS of what you have already been spending. Six seconds worth of spending to accomplish all I have enumerated above for ten years! And I promise you, Mr. President, I will not pay myself, my wife, my grandkids, my dog, or anyone else a bonus (if I earn any money I will stop receiving the SS disability). I also promise I will not take the maids to any conferences in Las Vegas. (If I did, I wouldn’t have to wait for the big C to kill me; my wife would take care of that.)

Now you might think you don’t have even that small amount of money left for my stimulus package. But I found it! You forgot, Mr. President, we just went into daylight savings time. That means we moved our clocks ahead one hour. WE SAVED ONE HOUR’S WORTH OF SPENDING! That is an extra $41,666,666.67 I found just waiting to be spent. My amount is pocket change, right? (Hurry dear readers, if you want your share you better claim it now. Once the word gets out it will be gone in, well, less than an hour.)

So what do you say, Mr. President? Do we have a deal? I think my stimulus package is a real bargain! Just have your people call my people and we will work out all the details. And remember once again, Mr. President, you will be making a poor old man with CANCER very happy.

Husbands Say The Darndest Things

2009-03-26T00:09:00.005-05:00

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

2009-03-24T01:56:00.006-05:00

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.

Are The Lobby Lights Flashing?

2009-03-18T00:20:00.004-05:00

That is the big question on our minds lately. Is the "Intermission" almost over? Regular followers of my ramblings may recall that when I stopped chemo three years ago this summer, I did not reach remission. In fact, my doc said we were stopping chemotherapy for three to six months only to give my body a rest from the poisonous chemo drugs (one of the drugs I took, Cytoxan, is actually a derivative of the famous World War I poison gas, Mustard Gas, and has similar properties.) A bone marrow biopsy before chemo showed my marrow 90% infiltrated with cancer cells but after eight rounds had only been reduced to 50%. As time passed and I didn't progress, I decided that even if I hadn't reached remission, I had achieved a real good intermission. Then a year ago last Fall, things started to progress again and it looked like we were approaching more chemo, then suddenly I stabilized. This is a strange disease.

Well, the end of December's blood tests showed movement again. Then February's showed even more. Now Monday's seems to have confirmed the fact that those little circulating cancer cells are accumulating again. The blood test in December showed a doubling of lymphocytes in four months. Doubling in six months is an indication for treatment, BUT you need to see a trend over many months. February's showed a tripling in three months. yesterday's showed a tripling from a test four and a half month's ago. My neck nodes are getting more bothersome all the time and I keep feeling more and more of them in all the chains of the neck.

Yes, I think the lights in the lobby are flashing to indicate intermission will soon be over, but I don't want to go out in the hall yet to confirm. In fact, it is tempting to just go home and skip the second act. I know that would be kind of dumb though since I already committed to see this play through.

What about the other blood indicators? Well, obviously the white count rose, but so did the red cells, all the way to normal! That is encouraging as I am not anemic now. Platelets dropped over 10,000, but are still above 100, so that is good.

My best guess is that no action will be taken until the summer when I go back to MD Anderson. That will also give us four more blood tests to get a good picture of the trend. Now to some of you that may seem counter-intuitive as you would think we would want to knock it down if it is rearing its ugly head. With this cancer you only get so many shots at pushing it down and you want to make sure you get the timing right. You don't want to fire all your bullets too soon but you also don't want to wait until the enemy becomes so powerful the bullets have little effect. Fortunately, my particular brand of CLL/SLL isn't as aggressive as some, but also it isn't as indolent as others. Monday I will see my hematologist/oncologist and also get my monthly infusion of IVIg. I'll let you know if he wants to change the game plan.

I just hope Act II is worth the wait.

Quite a week

2009-02-14T23:41:00.007-06:00

First of all, I am a little late, but technically I have 20 minutes left here in Texas, so Happy Valentines Day. I hope you all had a good day. Cheryl and I actually went out for dinner and it was her idea! Those of you who know us know how unusual that is. About the only time we go out to eat is on Sunday after church. Even many of our wedding anniversaries we have stayed home. So when she suggested it, of course we went. Over the years I have pretty much stopped asking because 99% of the time she would rather stay home. Here are a couple more pictures of our grandson, Gavin that have a Valentine theme.

This week was a huge milestone in my Mother's life. She entered a nursing home. She is 94 years old and although she is in overall general good health, she has been getting much weaker and has required more and more care. She reached the point where she couldn't get in the shower and had trouble dressing herself. She lived most of the year with my older brother in upstate NY and it became too much to try to properly meet all her needs. She used to come down here from January to about May and then she would go spend a couple of months with a younger brother in Ohio and then go back to NY which she always considered home. A few years ago we discussed having her move here, but she always wanted to get back "home." She was too weak to come down this year. She is in her wheel chair most of the time and walks very little with her walker. With my lack of strength now, if she had fallen I would have had to call for help to get her up. I think my brother found her a terrific place. She has her own room, and was able to bring all her own furniture. Before she went to look at the place, she told me it was important that she could bring her lift chair, her nightstand, her Bible and Jimmy's picture (our grandson who lives with us. They really bonded last year). Well, she got her wish. She said she really likes her room very much, the entire staff is very nice. The only thing she seemed to be having some trouble with is the food, but then she barely eats anyway and we have had trouble getting her to eat properly for a couple of years. She even attends physical therapy there, so that is good. I pray she continues to adjust well to her new surroundings. I know all the relatives up there will visit regularly and she won't be forgotten.

Sunday afternoon I went to Corpus Christi with Cindy so I could watch Gavin while she presented at a conference. I was able to take him to a beach for the first time and we also spent a lot of time walking around the waterfront sightseeing. I took TONS of pictures with my new camera. Here are just a couple:

When we got back home, I was wiped out, like Gavin was on the waterfront. The day after our return, I wasn't even dressed when Cheryl got home from work. But it really was worth it. Two places I have always loved are the mountains and waterfront - ocean, gulf, or lake.

Health wise I am hanging in there. The IVIg infusion seems to have pretty much cleared up the sinus infection. Last Saturday night/Sunday morning I woke up in the middle of the night with my chest really hurting. I even got up and took an aspirin, just in case it was my heart. Well, as I kind of thought, it was a chest cold starting as I could rapidly feel it getting congested. I started coughing some and coughed into the afternoon. I was afraid it was going to ruin, or cause me to cancel the trip to Corpus Christi. However, by Sunday afternoon it wasn't getting worse and by Monday morning the cough was gone! Every once in a while I can feel it trying to make a comeback as my chest will feel heavy and I feel stuff rattling around, and then it is gone again. Kind of a mystery. But then again, everything with this leukemia/lymphoma seems to be a mystery. My only concern is that twice now I have had lung infections with no real symptoms. Once pneumonia and once E. Coli. that only showed up on staging CT scans. I just don't want to get paranoid about it.

Finally, Cindy found out about a beautiful baby contest on "Live with Regis and Kelly." First prize is $125,000 college scholarship. The only problem was, she read about it late and the deadline was Friday at 5 p.m. eastern time. So she came over and I took over 100 pictures of Gavin. It was difficult trying to choose which one to send in. Some were funny, most were adorable. Here is one fun one, one of the many cute ones, and then the one she submitted.

After we submitted it, I heard that last year there were over 50,000 submissions. Oh well, we had fun. Besides, I already know he is the World's Cutest Baby. I don't need the judges to tell me that.....but, it would be nice if they did.

Naps - Not Just For Preschoolers Anymore

2009-02-03T08:44:00.006-06:00

"A nap is only nice when it's a luxury and not a necessity."

When I first read that statement somewhere a couple of years ago, I thought, "exactly!" One of the most common complaints those of us with CLL have is fatigue. Fatigue is very different from simply being tired and it is very, very frustrating. Frustrating for those of us that experience it and frustrating for those who have to put up with us. It doesn't matter whether the patient is in stage 0 or stage 4, the fatigue seems to affect most everyone -- but not all. Most of us feel like this:

On CLLforum.com, I did a search of the word fatigue and there were 237 separate threads with multiple posts that had the word fatigue in them. Here are just a couple of samples of comments:
"It's a way of life for me. You tell a 'normy' how tired you are and they just don't understand. And since I'm in remission it can't possibly be leukemia! Hey, just because there's gas in the tank doesn't mean it's good gas"

"Can u spell F A T I G U E????.........that is my new normal......I have decided I don't know what being "full of energy is anymore"......it is something I have to deal with"

"And I was always so damn tired! When I consulted my family doctor about it he dismissed my occasionally profound fatigue as simply needing more exercise...Even post-diagnosis, when I discussed how I felt with my oncologists, they told me to spend more time in the gym and get into better shape...I was not amused! Gradually, I was being exhausted by the smallest effort of even very basic tasks and climbing stairs became a chore. By the time I reached the top steps of even one flight my legs would be burning like I'd been in the gym doing squats."

"Some days horrible, next day OK. Doesn't make sense to me."

"Somedays I can go and go like the energizer bunny, other days I can barely drag myself out of bed. I hate it, it makes me nuts."

Just get some exercise. Get up and do something. Get more rest at night. That is common advice given to many of us. In fact, it is good advice to combat normal tiredness. BUT, it does nothing for this type of fatigue, in fact, one researcher says it can make it worse.

What causes it? The doctors aren't sure, in fact, MANY doctors and even oncologists dismiss the complaint as being trivial, or non-existent. If they can't do a blood test for it then it must not be real. I have even read comments from other CLL patients who don't experience it dismiss it from others and say we just need to get up and get moving. Fortunately it is becoming recognized more and more as legitimate and is now in the list of B symptoms for those of us with CLL.

Dr. Michael Keating, world renowned CLL expert says on his site:

"Most recently, we have recognized that many new symptoms appear to be related to CLL. One of the more common complaints of CLL patients is the presence of fatigue; patients describe themselves as drained from energy. They require multiple rest periods during the day to perform their activities. This reduced energy does not appear to be necessarily related to the stage of the disease although it is commonly found in the early phase of CLL and appears to be more noticeable in women. As with fatigue, patients with CLL will often complain of difficulties in concentration and in performing complex tasks. The exact cause of these symptoms is unknown although we are actively studying the potential cause of the symptoms. The symptoms may result from an immune reaction by normal lymphocytes to the persistence of the CLL cells.

The ability of CLL to interfere with patient's performance, ability to work and daily responsibilities and activities is very important because patients with this disease can live for many years and need specific recognition and intervention programs to reduce the burden of leukemia on their quality of life."

The National Comprehensive Cancer Network published a 39 page PDF document titled "Cancer-Related Fatigue." Unfortunately, they don't allow any copying of their document, but you can find it by clicking HERE. It has a lot of good information. Their definition includes the fact that cancer related fatigue is physical, emotional and/or cognitive tiredness or exhaustion that has nothing to do with any actual physical activity but interferes with normal functioning. They also say it doesn't compare to fatigue in healthy individuals and that it is more severe and more distressing and is less likely to be relieved by rest.

My fatigue was worse before my chemo treatments. It comes on suddenly and can be overwhelming. I remember one day when I was too tired to drive and that is so very rare that anyone else drives when I am in the car. We were heading home and were coming up to our street when I felt the wave wash over me. By the time we turned the corner and went a block and a half down the street to our house, only 1/10th of a mile, I was asleep.
After chemo, the fatigue never did go away. It was a different type during chemo. I would describe it as worn out, I guess. But now as my counts are going up again, it is getting stronger. I can be feeling fine one minute and then the wave washes over me and I just need to sleep. I take up to three naps a day and sometimes more. Yesterday I had my IVIg infusion and I came home and Cheryl was outside cutting down our mostly dead Jasmine that grows up and across the trellis on our patio. I was feeling fairly well so I went out to help. I worked less than an hour up on top of the trellis cutting and pulling off the vines and I was absolutely and totally wiped out. I barely got down the ladder. I was out of breath for about 30 minutes after I quit and had no strength. My red cells are almost up to normal so it isn't lack of oxygen there.

The fatigue takes away the motivation to do anything too. Before Christmas I was trying to get the outside lights up before our annual Christmas party we have at out house for our Sunday School department. I had a week to go with not much else to do. I just couldn't get out and do it. There were a couple of days I wasn't even dressed when Cheryl got home from work. It is very frustrating. Fortunately the day of the party I had a surge of energy and went out and finished it up by three that afternoon, although I didn't put everything up. My two grandsons did the gutter and roof line lights for me the week before. All except for the two tall peaks which scared them. So I did those. Going up to the second peak I could barely make it up the ladder. I used to do this all myself.

Lately it has really bothered me that I don't get things done (but not as much as it bothers Cheryl, I am guessing). I have been trying to self evaluate if I am just tired, really fatigued, lazy, or even depressed because depression is very common with cancer. I decided I am not depressed because when I was trying to figure out if I was, I didn't cry. HA!

I had my monthly oncology appointment yesterday along with my infusion. The results of my blood test from a week ago showed that my lymphocytes tripled since November 1st. They are definitely on the move again. He said we will have to keep a close watch on this for the next couple of months. My IgG levels were low which explains the sinus infection that started over the weekend. That is giving me both toothaches and an earache. Ah the joys of cancer.

Well, I wasn't depressed before I wrote this, but now....

This and That

2009-01-01T15:23:00.024-06:00

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.

I'm a Gadget Guy

2008-11-25T00:31:00.004-06:00

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

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

1. GPS

I need this driving aid and I really wish I had it when I was still working and traveling all around the state. I need a GPS. Yes, I said NEED. Several reasons:

* I am old and old people get lost.

* I am a guy and guys don’t ask for directions.

* Cheryl gets mad when I pull up to someone on her side of the car and I tell her to ask for directions.

* I have chemo brain and, and, and…darn, I forget why else.

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

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

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

2. LCD HDTV

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

3. Desktop Computer

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

4. Digital Camera

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

5. Trifocals

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

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

A Day in the Treatment Room

2008-11-21T11:41:00.005-06:00

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

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

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

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

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

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

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

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

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

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

Catching Up - Misc. Stuff

2008-11-14T22:50:00.011-06:00

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

What happened in October? Much.

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

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

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

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

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

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

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

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

What a Country!

2008-11-04T21:57:00.003-06:00

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.

Bye - Bye!

2008-09-26T22:27:00.006-05:00

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.

What a Privilege!

2008-09-20T00:13:00.004-05:00

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

2008-09-17T23:34:00.005-05:00

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.

Please Pray for Those Affected by the Hurricanes

2008-09-15T09:49:00.004-05:00

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

2008-09-15T09:19:00.005-05:00

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!

How Did He Get In There???

2008-09-03T00:06:00.006-05:00

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!

MD Anderson Visit

2008-08-30T01:04:00.004-05:00

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!

Ground Glass Opacities - Oh My!

2008-08-23T19:29:00.005-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Itching to go on Vacation - Literally

2008-07-31T23:22:00.006-05:00

Itching! Rash! Weirdness!...and Trouser Dermatitis

Ah, the joys of Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma. (Many would argue weirdness and I have been together long before my CLL/SLL.) I don't know for sure what causes the itching, but many, many folks with CLL complain about it. I may have discovered one cause in my most recent bout with the madness.

My first bout came a few months after I completed my last round of chemo and I wrote about in this blog in November 2006. At that time the itching was accompanied by rash that was widespread over my body. Since that time I have had a few minor periods of the itching without the rash. I have prescription cream I use if it goes beyond a few hours. I had suspected it was a delayed reaction to the Rituxan portion of my infusions as I had read somewhere that it could happen. However, now it is way too long since I have had Rituxan -- two years. But none of the itching episodes I had were nearly as severe as that first time -- until we went on vacation to upstate NY a couple of weeks ago.

The itching started on my upper legs on the Sunday before we left and continued to get worse each day. I started slathering on the prescription cream (it comes in a large tub), and wore sweat pants to bed so I wouldn't slip off the bed or get the dog stuck to my legs. Wednesday morning on the plane the itching was progressing down my legs while still driving me crazy on my inner thighs and the back of my knees. I willed myself not to scratch the itch, because once I do, it goes into overdrive. Sitting on a crowded plane scratching your legs rapidly with both hands going, "woo, woo, woo," is not cool. My shoes were feeling tight, but I didn't think much about it as that sometimes happens on a plane.

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

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

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

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

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

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

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

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

Perhaps the answer:

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

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

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

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

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

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

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

2008-07-28T21:30:00.006-05:00

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

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

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

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

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

What Joy

2008-07-12T16:00:00.005-05:00

BIRTH

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

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

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

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

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

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

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

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

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

A couple of hours old:

One day old:

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

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

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

Mother and son bonding:

Taken today

In Our Hearts Forever

2008-07-10T13:09:00.007-05:00

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.

HELLO! ANYBODY HOME????

2008-07-06T22:50:00.011-05:00

Come out, come out, wherever you are!

What happened to spring?Let me get cleaned up and then we can visit.Sorry, I really didn't mean to abandon my blog.

Sometimes you just need a break from this cancer thing and sometimes that break just goes on and on. Actually, I have multiple reasons for not posting for so long. Probably the main reason was that for much of the first part of the time I was gone I was not in a very good mood and I didn't want to come here and just whine. I was a real bear! I couldn't figure out why I felt that way, but I was angry a lot and not real pleasant to be around and I did not like it. Finally, after prayer and thinking about it for awhile, it dawned on me that the testosterone replacement is really a steroid and steroids and I don't play well together. So, on my own, I stopped taking my daily dose. After a few weeks I was feeling pretty much back to normal. Then I told Cheryl what I had done. She said she wondered what happened because she noticed a definite difference in my mood and attitude. When I told my doctor what I did, he said, "yep, that will do it." So, I would rather be more tired than more angry. I think it is a good trade.

At some point I signed on to one of my patient support sites for the first time in weeks and the first thing I read was a post by a young lady from Ireland whose mother just died from CLL. I closed out without even sending condolences which is not like me.

About the time I was going to get back to joining my on line friends and reading blogs, etc., my computer died. In fact, within about a week, my cell phone died, my printer died, my laptop died and my desktop finally about totally gave up the bits and bites. I'm just glad I don't have a pacemaker. First I got a new phone, then a new multifunction printer, then finally got my laptop repaired for a couple of hundred dollars and a wait for a part to come in. My desktop computer is still taking up space. But it gives Cheryl something to get on me about. Ha! Sorry, dear!

It's funny, but I really was feeling quite guilty for not posting and yet I still kept putting it off. I would sign on to write, and end up playing Bejeweled 2 Deluxe! I am addicted to it. But all of this reminded me of my procrastination days in school. I always put off assignments until the last minute. I thought I would join procrastinators anonymous, but I just haven't gotten around to it yet.

Slowly I have been getting back and trying to catch up. Unfortunately, while I was away, some fine folks lost their battle to this stinking disease. I will write about them in a day or two. I also lost friends to non-cancer reasons. Actually I have lots of news I want to write about but not now.

In health news, my disease is remaining stable. It is only progressing slowly and this month the blood work actually looked better than last month! My platelets have been over 100 for several months now. All I am doing is IVIg infusions and I am now able to do them only every other month -- YEA! They really aren't bad, but they do take six to seven hours and a lovely little bottle of STEROIDS come with them. So that night I stay up and then sometimes have breakfast with Cheryl before she goes to work. They also give me headaches for about two weeks, but I think that part is even getting better. The important part is, it works! Last year I had nine infections in ten months, including pneumonia twice. Since starting this last November, I have had one slight cold and that is all.

Thanks for checking in with me.

Stable -- It's Not Just For Horses

2008-02-06T14:40:00.001-06:00

I went to my monthly oncology appointment and got the results of a CT scan from last week. The bottom line, my nodes have remained stable! That is pretty amazing because the last time they had doubled. Yes, they are still wide spread everywhere, but mostly have not grown at all, and one was reported to have shrunk a little. It is so weird because I felt like my neck nodes had gotten bigger just since the scan, but my doc rightly pointed out that they will have a tendency to wax and wane. My blood work also remained stable since last month. The platelets dropped a little, but not much and are still just above 100.

The CT scan did say that the discs in my lower spine had deteriorated more since last time, but I knew that. I am getting up out of my chair and walking like an old man. And I ain’t old…unless you ask my grandchildren…and my kids…and my, oh, never mind.

I forgot to report other great news from last month. Although I lost another 1/4 inch in height (that's over two inches since I got out of the Air Force), my osteoporosis actually improved! It is still in the severe danger of fracture range, but barely. The doctor was very pleased and so am I. The weekly Fosamax pill is doing what it should.

Cindy's husband also had pretty good test results. The doctor saw no tumors and only found inflammation. He gave him antibiotics for a possible infection and if the bleeding has not stopped by next week, he will be doing other testing. Cindy was very disappointed that he didn't do all the tests at one time like she thought he would. Pray the antibiotics take care of this and the scare is over.

- My sister-in-law's sister's husband died of cancer Monday. He was only diagnosed in late November and it spread very rapidly.
- David E's prostate cancer is on the march and he will be trying a different treatment (see the link to his blog on the right). Pray for him, too.
- Karen, (The Adventure's of Cancer Girl link on the right) who has had multiple myeloma since 2005, has been undergoing treatment now for some time. She has gotten results, but not all that she deserves. She is the mother of a toddler (WCK - world's cutest kid) and her blog is fantastic. She has been able to keep a fantastic sense of humor. Obviously she could use some prayer also.

Yes, cancer still sucks!

(Wow, four entries in a week - even though three were all on the same day, I did done gooder, huh?)

Health Update

2008-02-02T22:10:00.001-06:00

I have continued to get the IVIg infusions and they really have worked as I still have not had any new infections. I still struggle with headaches for a couple of weeks after, but I don't think it was as bad this time. The main thing I don't like is that it takes all day.

The great news is that my IgG levels have really climbed. In fact, I may not need this next treatment and we made the appointment for six weeks out instead of four. The last blood test showed the levels all the way into the normal range (more than double what the level had been). I really thought we would skip this last round. However, my doctor thought the test was done too close to my last infusion and that it was just a spike and not an accurate reading. This time I will have the test two days before the scheduled infusion and then the results will be back by the morning of my scheduled infusion. If the level is still up, we will skip it and just monitor my levels. My doctor at MD Anderson said once they reached 700 to spread the infusions out to just be able to maintain that level. My other blood tests looked pretty darn good. My platelets have stayed above 100 for two months now. I did read somewhere that IVIg can also raise platelet levels. However, most of my tumor load is not in the blood, but in my lymph system and bone marrow. My nodes are continuing to grow and he ordered a CT scan to check on them. I have such mixed feelings over getting this test because of the radiation and there is a lot of controversy, even among doctors, over the advisability of getting them for this disease. I will get the results at my monthly appointment on Monday. I would guess that either he or my doctor at MD Anderson may want another bone marrow biopsy soon. Almost a year and a half ago my marrow was 50% infiltrated with the cancer cells (not sure I stated that properly).

My MD Anderson follow-up appointment was changed to the end of this month. Dr. Weirda will be out of town the day it was scheduled, so they had to reschedule. That's OK.

I seem to be pretty much holding my own. The only real difference I notice is the increase in my lymph nodes and I am MUCH more stiff and sore in my joints but I don't think that is related to the leukemia/lymphoma. Hard to say for sure. When I get up out of my chair, it is a struggle and I can barely move until after I have taken 10 or 15 steps. I know sometimes when I have gone shopping, I feel like I can barely make it around the store. Oh well, at least I can go to the store.

Recently we lost several members of our on-line support groups to this stinking disease. One of those was a young mother of a toddler; another was a father of a nine year old boy. Several others who's death was no less tragic and too soon. Also, the gentleman that was a former member of my church and with whom Cheryl and I visited at MD Anderson in November died. He never recovered from his transplant he had last May. He never did get home. One of the founders of the CLL Christian Friends web site was just diagnosed with lung cancer in addition to his relapsed CLL. His wife also has a different cancer that has come back. Another member about to have a stem cell transplant is putting that on hold because tumors from another type of cancer were discovered and they have to deal with that first. A wonderful lady who is a member of my Sunday School class had a mastectomy and is now undergoing chemotherapy. (She is handling it beautifully so far.)

Cancer SUCKS.

What Happened to January?

2008-02-02T20:28:00.001-06:00

Not sure how it can be February already. It sure seems like it was just Christmas. I really have been busy -- I think. We had a great Christmas with our girls and grandkids. Then we had our usual wild New Year's Eve celebration. Cheryl went to bed about 9 p.m. and I watched TV. At 11 p.m. I whispered "whoo-hoo" when the ball in Time Square lit up 2008, then said "whoo-hoo" again when it reached midnight here (I think I was still awake). That has been our tradition for about 30 years.

The only difference this year was that my killer dog, which I adopted last August, spent the night shivering in my arms -- terrified by all the fireworks being shot off in the neighborhood.

In fact, I had a difficult time getting him out in the yard even the next day. Unfortunately the carpet paid the price and Cheryl threatened him with returning to the pound. I can't wait for the 4th of July celebrations. Just yesterday we had a new back door installed that has a doggy door so he can come in and go out at will. The old door was almost all glass, but the bottom core was rotting from where it used to get wet before we had the patio covered. It needed to be replaced so we did the doggy door at the same time. It was funny trying to teach him to use it. I got stuck part way in it trying to show him how. (Not really)

Of course, now that he can come and go as he pleases, I will get even less exercise getting up to let him out and then getting up to let him back in. We will still have to go for our walks down the street which he gets really excited about!

On January 4th, Cheryl's sister, Diane, and my Mom flew down from upstate NY. Diane was divorced this past year and really needed the break. We were both very glad to have her here, but unfortunately she had to go back on the 14th to go back to work. She always helps out so much when she is here. Last visit she helped paint two rooms plus some other projects. This time she helped us get all the Christmas decorations put away (we have so much we have a separate storage shed full, just for Christmas decorations), washed some windows, trimmed some bushes and still had some time to do some sun tanning on the nice days. I need to have her come down at least once a month.

Mom will be staying with us for a few months. She is now 93 and much weaker than when she was here two years ago. It is a very good thing I am not working because I would not want to leave her very long in the house alone. She still gets around the house with a walker, but barely. One morning, Jimmy forgot his morning medication and I had to take it to him at school. Mom had not been getting up until after 10 a.m., so I decided to take the time to stop at the grocery store as long as I was out. I got back to the house at 9:20 and Mom was stuck in the bathroom on a stool we had put in there for her to sit on in front of the sink and mirror. She had gotten ill in the night and had gone in to get cleaned up. She had a pain in her left side and couldn't get up because it hurt too much when she tried. She had been calling for me and she didn't know I was not home. I felt horrible. I won't do that again! I ended up buying a lift chair from SAMS Club because she couldn't get up off any of our chairs. With my bad back, I was afraid I would really hurt it if I had to help her too much. Now we have pretty much settled into a routine. Her mind really is very sharp and it it wasn't for her horrible arthritis and bad knees, she would be in fantastic shape.

Cindy has been traveling quite a bit so I have also been watching Jonathan and taking care of their dogs. She is still struggling with morning sickness -- morning, afternoon and night. Her allergies have also been terrible. "Cedar Fever" is really bad here for folks with allergies from about Christmas until mid February. She is now up in Amarillo with her husband as he is going to have a medical procedure on Monday that requires anesthesia. He has been having difficulties for a couple of months now and, like a typical guy, had put off going to the doctor. Now it is really bad and they are going inside to look as the doctor suspects a tumor. Of course they are both very anxious over it. She flew up there last week to go with him to the specialist. The doctor wanted to do the procedure the next day, but he is a driller in the oil fields and he said he HAD to be to work that night. He needed time to get a driller to cover for him for 24 hours. They should know something Monday afternoon when the procedure is completed.

Wow, and I had pictured in my mind that when I retired I would be spending many days fishing.Well, since I don't get away from the house that often, perhaps I should try this type of fishing.

Well, I think that is all the news that's fit to print and some that ain't.

I Am Certified by the Federal Government

2008-02-02T19:25:00.002-06:00

No, not certified crazy, although, over the years, many people have told me they thought I was certifiable. First, the government certified I was old as I started getting Social Security retirement benefits last September at the ripe old age of 62.

Now, today in the mail, I received a letter in the mail. I was approved for Social Security Disability on my FIRST TRY!!! I have been certified officially disabled.

(Click on these graphics to see the animation)

When I retired September 1st, I applied for disability at the same time I applied for my regular Social Security payments (I turned 62 last August). I did retire earlier than I had planned because continuing to work was just too difficult, particularly with all the travel I had to do and instructing all day in a classroom. Most of the time I felt like I was barely functioning. We figured that as long as Cheryl was working we wouldn't have any problem with me just getting the reduced rate SS retirement payments. I really wasn't going to apply for disability, but when I was talking to the guy at Social Security when I applied for the regular retirement, he said I really needed to go try for it. Everything I read, I figured it would take at least two to three appeals and then maybe even a hearing with a judge. I wasn't too worried about waiting for payments because the regular SS benefits began right away for September. I very carefully filled out all the paperwork and had a copy of every blood test, bone marrow biopsy, CT Scan, bone scan, I had gotten since the year before diagnosis when I was diagnosed with Type II diabetes. I had reports of the diabetes, osteoporosis, arthritis, deteriorating spinal discs, and of course the CLL/SLL which is the real reason I couldn't keep going. I believe they also contact all the doctors I had listed. Even with all that, I didn't hold much hope. What a pleasant surprise. I really don't know if their decision was based just on the CLL/SLL or a combination of everything.

They determined my disability date as August 23, 2007. I only worked one day in August, and that was the date. So, to get the payments, you have to be disabled five full months and then the payments start the next month and that works out to this February. The only drawback, and it is very minor, once I have been getting payments for 24 months, I will become "eligible" for Medicare. Now for many folks that is a good thing, but my military insurance is so very good right now, I don't want it, but I will have to take it and the military becomes secondary. It also means I will have to pay for Medicare part B as the military insurance requires that. So, I will have that monthly expense. However, as Cheryl pointed out, I would have had to do that starting that August when I am 65 anyway and it is only six months sooner. In the meantime I will be getting an extra $350 a month more than I am getting for regular retirement right now, which more than offsets the monthly part B cost (currently $96 a month).

Disability payments must be reviewed every so often as sometimes people improve and can go back to work. There are three categories they put people in. The lowest is people they will review every 6 to 18 months. However, I have been put in the "improvement not expected" category and I will be reviewed in five to seven years. Lord willing, I will still be here for that review!

This extra really helps because when Cheryl retires in a couple of years, we will need everything we can get. We already have told the grandkids only a couple of years left of nice Christmas gifts from us and then it is McDonald's gift certificates (if they are still $5.00 then).

Hmm, don't know why the pictures aren't animated until you click on them.

40 Years and Counting

2007-12-23T00:23:00.001-06:00

Where did the years go? Oh I know it has 'only' been about 5 or 6 weeks since I last posted and I don't know where those weeks went either. However, what I am talking about is these last 40 years of married life. Today is our 40th wedding anniversary and it just doesn't seem possible. Much has transpired over those 40 years. Don't worry, regular readers of this blog. I know I tend to ramble when I do post but I won't recap the entire 40 years. But I would like to talk a little about our wedding.

We were married two days before Christmas in a little Baptist church in Norwich, NY. We chose this time because I was in the Air Force, stationed at Syracuse University attending language school, learning Russian and this was the time when we had our Christmas break so it seemed like a good idea at the time. Cheryl has said several times over the years since we have gotten older that she can't believe how unthoughtful we were to put our families through all that added pressure at the holiday time. Cheryl was from Norwich and my parents moved there when I was a senior in High School. I had to drop out of college due to some health problems and then I got a job working as a cook in the local hospital. Cheryl was a senior in high school and worked there after school as a "tray girl" putting the food on the trays and taking them to patients' rooms. I had just broken up with my girlfriend from college and she had just broken up with the boy she had gone with since Jr. High. We were "crying on each other's shoulders." I guess you could say it was a rebound romance. We went together for over three years before we were engaged.

Since neither of our parents had much money at the time (Cheryl's mom had died that summer from cancer), we paid for most of our own wedding. We saved a ton of money on flowers because we decorated the church in pine boughs and red ribbons. Instead of bouquets, the attendants carried white hand muffs with holly and ribbons (it was 40 years ago and winter muffs were popular). We rented a local restaurant dining room and brought our own snacks (home made cookies), cake and punch. We had a pay for your own drinks available. Folks were more understanding of that kind of thing back then. My goodness, my pay was just barely over $100 a month then. The most expensive part of the wedding was her dress and veil and the veil cost more than the dress - $60 I think. Cheryl made the most beautiful bride ever! You can't tell by these pictures that she was sick that morning -- nerves I think.

It was a beautiful wedding. We had lots of attendants as you can see in this picture.
(I think you can click on the pictures for a larger view)

My oldest brother, Jim, was my best man and Cheryl's sister-in-law, Lois, was her matron of honor. My nephew, Dan, and Niece, Pam, were the ring bearer and flower girl.

Cheryl's attendants were one of her sister's, a very good friend, Charlene, my sister-in-law, Barb, and her cousins. Two of my former bosses, my roommate at language school and two of my other brothers, Bob and Bill were there. My youngest brother, Bill, the current Broadway actor, was a junior usher. One of my brothers was stationed in Thailand and couldn't make it.

That evening Cheryl and I just went a few towns away to a local motel because we both wanted to be home and spend Christmas with family. We went out that evening and had a steak dinner. The next morning the maid started knocking on the door early to clean the room. We kept putting her off. Finally, she hollered through the door, "you are the only ones still here and once I clean your room I can go home for Christmas!" We finally let her in while we finished packing our bags. Because my mother had filled our suitcases with rice and put it between everything, there was rice all over the floor of the room. The maid asked us if we had been to a wedding. No, duh!! Obviously this wasn't the Hilton.

After Christmas we headed for New York City. I love NYC!! I used to go there every chance I got and went to plays, TV shows and the museums. I knew the city pretty well and was anxious to show Cheryl the sites as she had never been there, even though she lived only 200 miles away. I had made reservations for 5 nights (Cheryl had written to almost every hotel in NY to get prices - ha! Some replies were funny, like the one's that were men's hotels only or basically flop houses.) We had a nice room way up high. Guess what? Cheryl hated New York City. Being the small town girl she was scared to death. Scared of crowds, heights, crime, you name it. We tried getting into shows but since it was the holidays, sold out. Stood in lines for TV shows but never got in. We did go up the Empire State building - and came right back down as it was there she discovered her fear of heights. Sooo, we left on the third day and came home -- in a very bad snow storm. We took a shortcut over the hills (I was young and dumb) and couldn't always tell where the road was as no cars had been there. The snow was up to our bumper. Somehow we made it. After I graduated from language school, we took a second honeymoon to the Adirondack mountains. She loved it -- few people and lots of trees and animals. Fortunately I like that setting too, so I decided to keep her.

40 years is the Ruby Anniversary. I hope she doesn't think I overdid it. I bought her a ruby ring and two ruby necklaces. Hey, I might be retired, but she is still working and has a good job - Ha! The girls are having a 'cake and coffee' reception for us at the church after the services tomorrow, so that will be nice. Cindy wanted to have a much bigger party but we kind of squashed that. She wasn't too happy, but it is a very busy time of year. When we hit 50 we will let her have a larger shindig. She said except for a few other couples at church and our former church, she doesn't know anyone who has been married 40 years. She said all her friend's parents are divorced. Pretty sad, huh?

God has blessed us over the years. We have had lots of different trials and tragedies to deal with, but each made us stronger. We never did argue very much and never over money which is what most married folks fight about. I guess you have to have some to argue about it. I just thank the Lord for bringing her into my life. My parents made it to 62 years even with dad having CLL and I pray that I can do as well.

HEALTH UPDATE

Since this is a CLL blog, I better bring you up to date on that. NO recent infections - yea! The IVIg must be working. I got the bill from the hospital for the first infusion. I couldn't believe it -- over $17,000! $16,400 just for the drug. My portion after insurance? $12! Man, it almost makes me feel guilty getting this treatment. I had my second treatment last Monday in the doctor's office. A terribly long day. We got there a little before 9 a.m. and left at 5 p.m. I got my bag of steroids, bag of Benadryl, and then 8 bottles of IVIg. Of course the Benadryl put me in la-la land, so while I snoozed, Cheryl went shopping. And then that night I was awake most of the night due to the steroids. For most of the week I have been fighting the headaches, just like last month. Last month they went away after about 2 1/2 weeks. My blood work is still basically holding and my platelets went all the way up to 117. Normal is over 150, but 117 is way out of any danger area. I did read on the drug insert they gave me that IVIg is sometimes used to raise platelets, so this is another added advantage. I can tell my neck nodes are still slowly increasing, too.

Mentally I have been avoiding thinking too much about cancer. I haven't been visiting my forums very much. On the CLLCfriends site, I am scheduled to post the daily prayer once a week, so I do sort of keep up with the news there. There are a couple of folks who are having some major difficulties, either for themselves or a loved one, and I try to keep up with that. Some also post news from the other site, so I sort of keep up there, too. I just heard tonight that Denise, from the forum, will be going home for Christmas after her transplant so that is wonderful news.

Well, I need to get to bed so I don't snooze through our reception.

You Surprised Me, Doc

2007-11-16T22:31:00.001-06:00

Wow, another two weeks and much has happened. I had my first IVIg infusion a week ago Monday. I tolerated it pretty well. We arrived a little before 8 a.m. and the infusion was started just about 9 a.m. We had to wait for the pharmacy to mix it and deliver it to the infusion room. I took two Tylenol tablets and was infused with premeds of Benadryl and a steroid (I forget which one). They watch you very closely for any reaction, particularly watching for the blood pressure to go too high. Well, of course I never do anything the expected way and my blood pressure dropped way too low -- twice, maybe three times but the one time it was 40 over 20 and the nurse didn't believe that one. I was reclining in the infusion lounger chair so they made me sit up. But eventually my pressure came up closer to normal and stayed there so they were able to slowly increase the infusion rate. I slept most of the time. I had the bag of immunoglobulin antibodies and was done and out of there by 2:30 in the afternoon. That evening I did have a bad headache and had a headache most of the week. That is a common side effect. It really must have done some good because Jimmy, our grandson who lives with us, was sick all week and our other grandson, Jonathan, my daughter, Cheri, and son-in-law, Marc, were all sick with very bad colds and I did not catch it! My next infusion is in December.

Then this past Monday, I had an appointment at MD Anderson in Houston with a CLL specialist, Dr. William Wierda. We drove down on Sunday afternoon, Veteran's Day, which was also Cheryl's birthday. (We all went out to dinner together after church to celebrate.)

I thought the appointment with Dr. Wierda was very productive. (This was my fourth time seeing him.) My local doc thinks I might need to start chemo again, but Dr. Wierda agrees with Cheryl and me and doesn't think it is quite time yet. He does agree we are moving in that direction, though. When discussing the reasons my doc thinks it might be time, we talked about my widespread swollen nodes in every region -- neck, chest, stomach, and groin. I told him they mostly measured 3 cm by CT scan up from 1 to 1.5 cm last January. He said most of the time they don't treat just because of swollen nodes until they are over 7 cm. I had not heard that before. He asked how low my platelets had gotten (only in the 80s this time) and Monday they were 102.

He said before we did any treatment he would want to rerun most of the prognostic tests, with the exception of finding out if I am mutated or not as that doesn't change. He said he particularly wanted to check to see if I picked up any new chromosomal deletions. He then said, "Of course your body didn't listen to all those good prognostic indicators the first time around. I remember giving you all good news and saying you probably wouldn't need treatment for a very long time." I asked him if he thought there were prognostic indicators that we don't know about since I had all the best ones and needed treatment so quickly. He said of course there are and we just haven't found them yet. He said that is the only thing that explains the odd cases like me and those folks that have poor indicators and yet go without treatment.

I did tell him my suspicions that I may have had this for up to ten years but there had not been a CBC done. He said he really doubted I had it that long because of how quickly I progressed after diagnosis.

Then he shocked and surprised me. He said that when it is time for the next treatment, he wants me to start the process of preparing for a stem cell transplant. He could tell I was surprised, but he said that didn't mean we would do it then. He explained it takes a very long time to find a donor and get things prepared and set up. He wants to get the process started and have me meet with a transplant doctor/team and make sure I am a good candidate. I asked about my age and he said it used to be they wouldn't do it over 50 or so, but by today's standard I am relatively young (62) - bless his little heart.

Since Monday I have thought about this quite a bit and to be honest, it is very scary. It is a rough procedure with a fairly high (in my opinion), mortality rate. Basically they destroy your bone marrow with heavy chemo and infuse the stem cells and hope they engraft and take over. Recovery time can be quite long. Now I do know some folks that are doing very well and had a relatively "easy" time (remember, I said relatively). In fact, I met one of those guys, Paul, in person Monday. But just today I was catching up on some blogs and there are folks that are a couple of years past transplant still dealing with lots of problems and graft vs. host disease. I also know of several who did not survive the process, including one dear lady, Phyl, whose journal is listed over on the right side, here. We also visited with another fellow while there, a former member of our church, who had a stem cell transplant and his sister was the donor. He was supposed to come home three months ago, but he is still dealing with major problems. He hopes to be home by Christmas. His transplant was in May.

Dr. Wierda said he was very glad to see I had started IVIg. I asked him about my level not being below 300 (low 400's) and if it really fit the criteria. He said absolutely. Anything below 700 with multiple infections indicated the need. He said to do them monthly, but have my doc keep checking the levels and once they hit 700 to space the treatments out to just maintain a level over 700.

He said again he would strongly recommend Fludarabine, Cyclophosphamide (Cytoxan), Rituxan (FCR) for my next chemo regime if I didn't participate in a clinical trial. In fact, the two trials he mentioned that I would qualify for are adding stuff to FCR. (One of the trials is a double blind study and some folks would only get a placebo added to the combination of chemo drugs.) I reiterated that I was hesitant to do FCR because of how Fludarabine depletes the T cells and leaves you vulnerable to infections. Since this is a B cell cancer, I did not like the risk. He then said slowly, "and how many infections have you had this year?" Umm, nine. He said the leukemia was depleting my immune system and causing me to get these infections. The cancer is still growing, crowding out the healthy bone marrow. FCR would deplete the T cells but they would start to come back in six months to a year and the main danger of infections would be past. (Now Dr. Hamblin has said several times that NOTHING will completely restore the immune system for those of us with CLL.) Also the VAST majority of folks with FCR are getting a five year remission and many are getting even longer remissions. For the first time, it started to make sense. He didn't say it again this time, but I knew he wished I had done FCR the first time. However, I don't regret using my choice of Cytoxan, Rituxan and Prednisone the first time as I have now gotten 16 months of a partial response. Not a bad intermission. Basically it is the same thing, just without Fludarabine.

The final surprise, instead of saying "see you in a year," which he has said the last two times, he said he would like to see me again in two months and then changed it to three months. I didn't ask, but I had the impression that he thought I might be real close to needing treatment by then. We'll see. But at least I will be getting through another holiday season without being on chemo.

And finally, report cards came out this week for Jimmy. He had 5 A's, one B and one C!!! The best report card ever. He didn't even show it to us, Cheryl found it in his school bag. We are so very, very proud of him and we all went out to dinner to celebrate. He chose the restaurant. Here he is at his last football game.

Catching Up -- Again!

2007-11-04T13:46:00.001-06:00

Well, you would think that since I am retired I would be able to keep this blog updated, but I really think I lose track of time much easier now. I figured I better update the latest before my good friends, the Dunns, send a big, burly, San Angelo cowboy down here to slap me around.

OK, lots of news and it is all good! I had my heart doctor appointment and he told me the enlarged heart thing was really nothing to worry about and that many people my age have enlarged hearts and don't know it. Hmm, "people my age"?????????? The young whippersnapper!

(A paste from the Word Detective: "Whippersnapper" is a somewhat archaic term, rarely heard today outside of movies, and then usually from the mouth of a character portrayed as chronologically-challenged and hopelessly old-fashioned to boot. A "whippersnapper" is an impertinent young person, usually a young man, whose lack of proper respect for the older generation is matched only by his laziness and lack of motivation to better himself.
One might imagine that the term derives from the understandable temptation among more productive citizens to "snap a whip" at such sullen layabouts, but the whips in question actually belonged to the whippersnappers themselves. Such ne'er-do-wells were originally known as "whip snappers" in the 17th century, after their habit of standing around on street corners all day, idly snapping whips to pass the time. The term was been based on the already-existing phrase, "snipper-snapper," also meaning a worthless young man, but in any case, "whip snapper" became "whippersnapper" fairly rapidly.
Though "whippersnapper" originally referred to a young man with no visible ambition, the term has changed somewhat over the years, and today is more likely to be applied to a youngster with an excess of both ambition and impertinence.)

But I digress (as usual). He said to be on the safe side he was going to send me for a chemically induced stress test and nuclear test (inject radioactive dye). Bottom line, I had the tests and everything looked very good and even plaque build-up that showed years ago seems to be gone.

I then had my monthly oncology appointment and my blood tests looked good. My platelets made it up over 100 again (they have really been bouncing) but my neutrophils are low. Lymphocytes still climbing slowly and the percentage is up over 80%. Now I know the percentage isn't that important and it is the absolute count that matters, but for some reason my doctor puts a lot of stock and emphasis on the percentage. He is really looking forward to my appointment at MD Anderson in Houston on the 12th. He made an appointment to see him again the very next week.

Another piece of good news is that my insurance finally approved the IVIg infusions. The nurse called me Thursday and it is set up for Monday, tomorrow, over at the hospital. Now initially when we were talking about this, my doctor talked about being in the hospital and the first time it would be given over a number of days, however that has changed. I will be at the hospital, but it will all be given at one time. He said to plan on five to seven hours this first time as it has to go very slowly as they watch for adverse reactions. I have initially been approved for once a month for five months, but he told me on the phone I may be getting this once a month for the rest of my life. This stuff is antibodies to help me fight infections and I wrote about it in a May blog entry which you can read HERE. I have had nine infections since last January, including pneumonia twice, bronchitis, ear infections, throat infection, and sinus infections. I really pray it helps as Dr. Hamblin posted in a reply to me last time, "The clinical trials have only shown a benefit in CLL for patients with IgG levels less than 300 who have had more than one bacterial infection in the past year." Mine are in the low 400s (723 to 1685 is normal at my lab) but I do have it beat on the number of infections!

And talk about time sneaking up on me, last Saturday was the annual Light the Night Walk fundraiser for the Leukemia and Lymphoma Society. Now I have participated in it for the last three years and through the wonderful support of family and friends, I have raised thousands of dollars. This year I didn't even set up my page until the Monday before and sent out the emails asking for support that Monday. But then the site messed up and the emails never went out. The email finally went late Tuesday and early Wednesday! However, folks came through again and by walk time on Saturday I raised $1,111. Not as much as previous years, but fantastic in such a short time. I still have a couple of other folks who have promised to donate and I have until the end of November to turn in the money. I really believe in the work they do as I personally know folks who benefited. My fundraising page can be found HERE. It was a good night with several thousand people walking. It was at a new location this year and was at the old hospital grounds where they recently opened the new Dell Children's Hospital. We walked past the hospital and they had the children on the oncology ward lined up at the window's waving to us and of course we waved back as we walked by. Here is a picture from the night with Snickers.

Our grandson who is living with us this school year, Jimmy (oops, "James") had a rough couple of weeks, but his medication has been adjusted and things are back on track. Most of his problems happened here at home (daily) and the two incidents at school were minor (compared to last year). His three week progress report came out and he has four A's, two B's, and two C's. That is such a huge improvement over last year when he had all C's and F's. We are so very proud of what he is accomplishing this year. Since he passed, he is back playing football. I hope I get done with my treatment tomorrow so I can go see him play in his last game.

Jonathan, my other grandson, got all A's and one B and I think my granddaughter also had all A's and one B. They get their smarts from their grandmother.

This morning a lady in my Sunday School class told us she just found out she has breast cancer. On the fifteenth she will have a lumpectomy and then radiation treatments. I don't want to put her name here as I didn't ask her for permission, but I would appreciate prayers for her. God will know who you mean.

Well, that is it for now -- all the news that's fit to print and some that ain't.