Happy Canciversary To Me

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

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

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

So what has happened in the last four years?

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

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

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

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

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

I got home at five.

I just prayed for them again.

A Day in the Treatment Room

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

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

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

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

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

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

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

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

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

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

Ground Glass Opacities - Oh My!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Joy

BIRTH

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

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

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

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

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

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

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

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

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

A couple of hours old:

One day old:

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

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

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

Mother and son bonding:

Taken today

HELLO! ANYBODY HOME????

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

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

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.

Catching Up -- Again!

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.

For Everything There is a Season

When we moved to this area we looked at a lot of houses to find just the right home for us. Two things primarily impressed us about this house. For Cheryl it was the kitchen and the huge amount of counter space. For me, it was a tree. When we pulled up to the front of our home for the first time, I was impressed with the sight of the large, multi-trunk tree at the corner of the driveway. It had character.

The trunk that was closest to the driveway wrapped one complete turn around the trunk next to it and branched out over the driveway. (I couldn't find a picture that still had that trunk in the photo.) The builders of this home even accommodated the unusual growth by building the corner of the driveway out and around it. After moving in, I quickly discovered I had to be careful backing out so as not to hit it.

Our tree, which was already very large, quickly grew much larger. Every year I needed to hand trim branches as they drooped too close to the sidewalk and made it difficult for passersby. Technically it was probably multiple trees that grew close together, but we just called it “our tree.” Our tree covered the entire front yard and over the whole driveway. It provided shade during the hot summer and a place to hang lights at Christmas. We loved our tree.

About seven years ago we noticed some cracks in the large trunks and became concerned that a strong storm could knock it down. We called a ‘professional’ to have a look. He said it was still OK, but recommended we cut it down because it was a Hackberry which he called a “trash tree.” What??? Trash? Well one person’s trash is someone else’s treasure and that tree was our treasure. His price to cut it down was VERY high. We thanked him and sent him on his way. We did have another fellow out to give us an estimate to cut it down – his price was very, very low. But our heart was not in that and we just had him trim it some and he did a good job. The next year we noticed that our tree began to leak sap all over our cars. Each year it got worse. Then, through the power of the Internet, we discovered the “sap” was the “honeydew” from aphids feeding. Yep, sap that had passed through the aphids. I bought some ladybugs to try to control them – didn’t work.

Two years ago the portion that had the trunk that wrapped around the other trunk, died. Just like that. Earlier that spring I had noticed a fungus at the base that was white and black. I just scrapped it away. We cut the top off but left the trunk because I thought it might be supporting one of the branches of the trunk next to it. Last Spring we were standing in the drive and my youngest daughter leaned against the trunk and it broke off at ground level. The base was like sawdust. Yikes.

Over the years the cracks in the trunk had been getting larger and we kept debating about having it cut down. But we loved that tree and couldn’t bear to do it. But last year, after that trunk broke off we called the fellow out who had done the trimming. I was going to have our tree cut down. But when he arrived, I just couldn’t do it. We had him do a major trimming of all the lower branches and also trimmed it out away from the house. Basically, he lifted it up, thinned it out, and trimmed all the way around the crown. Again, he did a good job. Cheryl kept saying some day we would be sorry when the tree fell on our cars or on the house. But she loved it too and understood my reluctance.

A few weeks ago I noticed the portion closest to the driveway was looking a little puny on top. The leaves were sparse and looked sick. Then I noticed the dreaded gunk around the base of the trunk.

Upon examination, it was around the ones next to it too. When I showed it to Cheryl, she took her car keys to scrape at it and her keys sunk right into the trunk. YIKES! I knew it was now time. I couldn’t put it off any longer. It had to come down. I called, my tree guy who came out that evening, gave me a price (much higher than the price from several years ago) and he came back with his crew the next day. They arrived about 9 a.m. Three large trailers full of cuttings and seven hours later, the tree was gone.

The only evidence was a lot of sawdust everywhere and stumps cut off at ground level.

I couldn’t help but make an analogy to my disease and some other types of cancer. Outwardly everything looks good. For a long time the tree really did look healthy and even the day it was cut down it still looked pretty good. People walking or driving by and glancing at that tree had no idea. It looked very healthy. But it was what was going on at the base, in its “marrow” that told the true story. There was a fungus, a disease, a cancer eating away at the core of that tree. Perhaps if I had treated the disease sooner, or with a different type of medicine, I could have saved it. Maybe, maybe not. But it is too late now. Choices were made and there is no going back. That tree brought shade, beauty and pleasure for many years. Now it is gone, but the good memories remain. The yard looks very different, but it is time to move on. No more aphid poop dripping on my car.

HEALTH UPDATE

So, what is going on with me? A recent X-ray shows the pneumonia is gone. That was a strange episode. I see Dr. Netaji, my hem/onc doc next Monday.

The next big drama will be on Saturday, October 6th. I will have major dental surgery. The periodontal guy I saw had this fancy new type of X-ray machine that immediately transferred the pictures directly from the receiver inside my mouth to the laptop computer. Never had to take it out to develop film, just repositioned it around in my mouth. Amazing. The pictures were so sharp, bright and clear that for once I could actually see everything he pointed out to me. Before whenever a dentist showed me X-rays I would just wisely say, “hmm-hmm, oh yea,” and pretend I could see what they were talking about. But this time I really could. He put the laptop on my lap (how thoughtful) and zoomed in on the pictures and showed me exactly what he was talking about each time.

Anyway, the infection is still wide-spread, even though it feels much better. I have had trouble there ever since a botched set of root canals were done 8 years ago. I was on codeine for two weeks that first time and couldn't eat on that side for almost two years. It has been one infection after another. The root canals were redone (the first posts actually went up through the roots into my gums causing pain and infections), had surgery once before on the roots, but not this extensive. On the X-ray I could see where the root canal on the third tooth from the back got botched and the drill file went out through the side of the tooth (of course I remember when that happened). That repair job is deteriorating so he is going to seal it from the outside once he has everything opened up. Anyway, the bone has deteriorated, and my sinus cavity above has collapsed (or grown?) into the root area of the teeth and is all infected. He showed me where the sinus cavity should be, with a good buffer between the teeth, and how it has bowed right down into the roots and just above the bottom of the gum line. He thought I should be in much more pain than I have been. He is going to remove the last molar (upper left) where most of the problem is, but still do surgery on the roots of the next four teeth too. He will be doing a bone graft and somehow doing something to clean out the infection in the sinus cavity - I didn't quite understand that. My mind must have shut down at bone graft. It will take two and a half to three hours.

Today I got a letter telling me how much this will all cost. I guess I am helping him pay for that fancy X-ray machine. The bill will be almost $5,000! Oh, but I get a 5% discount if I pay by cash or check – not credit card. Isn't that nice? I have already spent several thousand dollars up there over the last 8 or 9 years. My wife always said I should have sued that first dentist and for the first time I think maybe I should have. I just hate it when folks sue every time you turn around.

I innocently asked if I should have a substitute teacher ready to teach my Sunday School class the next morning. He laughed and said that would be a good idea because I would still have packing in my mouth. Hmm. He said he won't be doing anything until he consults with my hem/onc on every aspect of what he will be doing, including all the meds. He said the standard antibiotics he normally would give might not be strong enough for me. Sure enough, he called yesterday and changed the antibiotics to a stronger one. I will also have blood tests next week to make sure my platelets are still up.I actually think I would rather go through chemo again than have this surgery. However, if it works and finally clears this up after all these years, I guess it will be worth it. For years I had wanted to pull this tooth and the one next to it, but every dentist I went to strongly discouraged it. Now that the bill came in, I am wondering if it wouldn't be best just to pull that whole row and put some artificial choppers in.

As always, your prayers and well wishes are greatly appreciated.

NOT the "Good" Cancer

Chronic Lymphocytic Leukemia (CLL) is often described as "the old man's disease" or even "the good kind of cancer" by medical personnel. These descriptions anger those of us that have it. Although the first description may fit me, it doesn't fit many, many others I know who are female and/or in their 40's, 30's and, in a couple of cases on our support sites, 20's. Certainly NONE of us would ever call it the good kind of cancer.

We have lost many good folks to this disease over the years, but recently we have had a rash of losses that have saddened us all. Just in the last few weeks, we lost Dee Davis from the ACOR list. In my last post, I wrote about the passing of Kurt Grayson. David Arenson wrote a wonderful tribute to Kurt on his blog HERE. Kurt's death was followed by the death of a dear sweet lady, Phyllis Keeton on September 3rd.

Phyl was a vibrant, humorous, positive, wonderful lady. She was diagnosed in June 2004, and after several chemo treatments, underwent a Stem Cell Transplant on March 29th this year. Initially she did pretty well and then she developed complications. She fought a good fight. On March 1st, as she was preparing for the stem cell transplant, she wrote this:

And I don't worry. I won't get one day added to my life by worrying. I know there are risks, but life is full of all kinds of risks, no matter how "safe" we try to be. There's a song that says:
"I'm a winner either way
If I go or if I stay
Cause I'll still have Jesus with me
Each passing day
I'll have a healing here below
Or life forever if I go
Praise the Lord,
I'm a winner either way!"
I'd like to stay a while longer, 'cause I think there's things left for me to do, but when the time comes for me to go, I'm still gonna be a winner! Phyl

Phyllis has her final healing and she is a winner.

On September 5th, DeAnn, a caregiver member of the CLLForum, lost her father to CLL. He had been diagnosed only two years ago. It just seems as though sorrow is being heaped on top of sorrow. There are several on both of my support sites who are not doing well at all.

At the end of July, two national figures, newsman Tom Snyder and NFL football Hall of Fame coach Bill Walsh both died from CLL. And of course last year Ed Bradley of 60 Minutes fame also died of CLL. These famous folks dying of CLL is what made even more amazing a comment a doctor made to me last month.

Many folks on my support sites, the CLL Forum , CLL Christian Friends, and ACOR, report that when initially diagnosed their doctors told them not to worry because they had the good kind of cancer. Well, it finally happened to me. I had an endocrinology appointment last month and I saw a new young doctor who had just joined the practice. This young doctor really blew me away. She wasn't quite 30 years old. Besides some annoying comments like, "Wow, it sure is hard to tell what symptoms goes with what because you have so much wrong with you," I finally got the "good cancer" speech. She said, "I see you have CLL. Well, that's the good cancer to have." I replied, "yep, same one my Dad died from three years ago."

Genuinely shocked, she said, "He died from it? That's unusual. I didn't think anyone died from CLL. I remember distinctly in medical school they said you don't die from CLL." I told her I guess they forgot to tell my dad that and all the other folks I knew who died who were members of the Internet groups I belong to. She was embarrassed.

Of course, after I left there, I realized I should have said, "Well what about Tom Snyder, Ed Bradley, and coach Walsh?" I also should have taken the time to educate her a little on CLL and also let her know how it really annoys folks who have it when we hear that it is the good kind to have. Now, granted, this new young doctor's specialty is not even close to CLL, but what the heck are they teaching these folks in medical school today?

Obviously a lot of doctors are being fed this nonsense. True, we know what they usually mean, but still, there is no "good" cancer. If it is so "good" I will gladly let them have it instead of me. No, actually I would not wish this on anyone. I had a doctor not long ago who, in my opinion, did say it properly. He said that none if it was any good but if I had to have any of it, this would be the one. I knew what he meant. There are many types of cancer that are more aggressive and cause much more pain and suffering.

This is from Tom Snyder's blog, April 2005, when he was first diagnosed (same time as I was). He said this:

"Anyway, my doctors assure me this is nothing to worry about, and I have to accept that, I guess. They say this kind of leukemia is not fatal, that people can live with it for thirty years. I looked up chronic lymphocytic leukemia on the Internet and found a source that predicted people who are diagnosed early can live up to twelve years. Those who are not diagnosed early--and the website does not define "early"-- have a survival rate of about two years."

Isn't it sad that Tom had to get his information from the Internet and not from his doctor? How prophetic it was for him that he did die just slightly more than two years after diagnosis. I often wondered if he ever went to see a true CLL specialist.

One of the things I think that may contribute to the perception it is a good cancer is that the vast majority of us do not look sick at all. It is a cancer of the blood, bone marrow and/or lymph nodes. Except when the nodes get exceptionally large, the effects are not usually visible to the eye. In July, another member, Gary E., died and only a day or two before he passed his wife posted a picture of him in his hospital bed surrounded by friends and family. Even though I knew how critical he was at that time, I was struck by how well he looked!

When folks die because they couldn't fight off the pneumonia or other infection, the cause of death isn't usually listed as CLL, but rather as pneumonia or respiratory failure, or whatever the infection was. I think this may contribute to the myth that CLL isn't serious.

When I posted some of the above on my sites, it got a lot of reaction from folks, especially on the forum. I wish I could post all the replies, but I thought I would post this one from the CLLCfriends site. I didn't ask his permission, so I won't use his name, but I think he said it pretty well:
' Yea! I've love going thru chemo 4.5 times in the last 6 years. I really enjoyed the nausea and the diarrhea so bad I had to use diaper rash med. cause it burned so bad. I did get a nice vacation in St Louis Mo. at Barnes Jewish Hospital. Great room service! The tri- fusion catheter for the three bottles of poison I had to drag around on a pole was great. Then when they ripped the catheter out because it fused to the muscle and I was only given a local, also great. I am also grateful for the 18 different meds I have to buy every month, didn't have nothing else to do with riches.................. " So thanks doc." But after all being said I have grown closer to God.'

One last point. It is also true that there are many folks who have a very indolent form of the disease. For them it never seems to progress and if there is some progression it does not seem to cause problems. I have read of cases where folks have gone for many, many years with no treatments and no problems at all. Those are not the majority of folks I know. Even though Dad had chemo several times, he did survive for 20 years with this disease.

Fortunately, I am doing well. No matter how this post might sound, I am not depressed, just frustrated with the loss of so many wonderful folks to the "good" cancer that isn't so good after all. Please pray for the families of those who have passed and for those who are struggling right now. If you found this blog because you are newly diagnosed with CLL and you did an Internet search, it is not all doom and gloom, I promise. I'll be more upbeat next time.

(By the way, I didn't think too many folks actually read this blog. Three days ago I put a visitor counter on the blog. I started the count at 100 because I didn't want to look bad with only one or two views. HA. I just looked and the counter is over 200 right now - it is at the very bottom of this page. As of last night, I have had 89 unique visitors since Tuesday morning. That amazes me!)

Tired, Tired, and Retired

What happened to August? Did anyone see it go by? Wow, what a busy month and it flew by. August was my practice-for-retirement month. I had managed to save enough leave that I was able to take just about the entire month off before my official retirement date. So, what were some of the significant happenings? Well, first of all NO blood tests this month. That was a first for quite awhile. A little strange also since the last blood tests put me back to stage four. Oh well, I have some tests coming up this month and we will see what is happening.

August 3rd I turned 62. It is this milestone birthday that is allowing me to retire early as I can collect reduced Social Security. I think I have said here that I hadn't planned on retiring until I was at least 66. However, with this stinkin' disease, it was time. I wasn't real productive at work and I was so tired most of the time. I wanted to retire now so that I could still enjoy some of this time without working. I didn't realize how busy I was going to be, at least so far. But, even though I am getting up fairly early each morning, it still isn't 5:30 a.m. and most days I do get a nap in at some point during the day.

Most of August I had one of the grand kids staying over just about every weekday. I think the family thought I might get bored or depressed not working - HA! I really do like having the kids here though. Even went fishing a couple of times with the boys.

The second week in August I spent a day at two dog pounds picking out a new companion. I thought I had found one at the first pound and spent some time in the yard with it. But, even though it was OK, there didn't seem to be a strong connection and after we got into the yard, he pretty much ignored me. So I went over to the county pound and immediately fell in love with a long-hair Chihuahua mix three year old male dog. He weighs 8 pounds. I took Cheryl back when she got out of work to have a look at him and we came home with him. Got him on Tuesday and had him groomed on Friday. Here are before and after pictures, meet Snickers:
We have certainly bonded and he barely leaves my side. He is a super calm dog and sleeps most of the time, either on my lap or in his bed. He doesn't know how to play at all and I am trying to teach him. Today he actually ran around the yard in circles, the most activity I have seen from him. We do go for walks a couple of times a day so at least I get some exercise. Here is his favorite spot when he is not on my lap:


Next on the agenda was the going away luncheon my work held for me. It was a wonderful time. There were even several friends from my former work place who were able to make it. All of my local family was there except for our granddaughter, Holly. She was at camp that week. I really appreciated all the hard work my boss and others put into the affair, even though I had asked them not to make a fuss. It was held in our training room and the theme was Independence Day (my independence from work). Plus they know I like patriotic themes. Here is just one of many pictures I have of the affair and a coworker took a bunch of pictures and his wife set them to music on a DVD for us. Nice memories.


Then that next Thursday was my very last day at work. In the morning I attended a class as a student. A co-worker put together a new training and it was based on generational differences on views of human sexuality. I was the token old person represented, oh, I represented the "mature" generation - my desk sign said so. Then I spent the afternoon doing the final sorting of papers and cleaning things out and packing up stuff to keep.

That night was the next huge thing that happened in August. Our one 12-year-old grandson, Jimmy (um, "James") has some major problems and as a result had a very difficult year last year in school because we all felt the school officials did not deal with him properly. Cheri, his mom, tried to get him transferred to a different school within his district (one that was actually closer to their home). The new school accepted him, but the principal of his former school refused to release him. She appealed the decision. That Thursday the appeal was turned down because that principal still refused to release him. Cheri got upset and withdrew him from school. Earlier in the year we had discussed him coming to live with us and going to Round Rock schools, but when we were told she would have to give us legal custody, we didn't pursue it anymore. Well, now we had to pursue it. That next day was the last day to register before the start of school on Monday. And it had to be before 11 a.m. We spent Friday scrambling to get him registered, filling out papers and getting legal paperwork notarized. Somehow we got it done at 10:55 a.m. We are his guardians for school. Jimmy lives with us from Sunday afternoon until he gets out on Friday then he goes to his house for the weekend. He has also signed up for football. He made it through the first week of seventh grade without any trouble, including football practice. Three weeks ago, in addition to seeing his psychiatrist each month, he began seeing a Christian counselor once a week. He is very motivated right now to get his emotions under control. I think he is on too much medication (9 pills a day), but it is better than when he is not on them. He has seemed much happier so far and is doing very well. Here is a picture just before leaving for his first day of school. We had prayer just before he went out the door.

So, as you can see, I have not just been lying around. Oh, I am doing the cooking, cleaning and laundry too. I may have to find a job so I can relax, HA. Coming up next in two weeks are blood tests, another CT scan and then the week after an appointment with my oncologist. I don't think there will be too much change from last time. In fact, it may be my imagination, but I think the lymph nodes in my neck might actually be a little smaller than they have been. At least I don't think they are growing.

Our CLL community suffered a very sad loss this past week. Kurt Grayson passed away from complications of CLL. He was a character and I considered him a friend even though I never met him in person. We corresponded a lot and he gave me lots of advice, particularly when I was first diagnosed. He was an actor who was in many, many television shows and movies in the 60's, 70's and 80's. He lived the life in Beverly Hills, but he was a warm, caring, passionate and sometimes ornery human being. He was a generous person who reached out to fellow CLLers and helped them in so many ways. He was one of the founders of http://www.cllforum.com/. He had really been struggling this past year and although he was weak and wheelchair bound, traveled to NY with his nephew to seek a final treatment. He barely got started when he ran into major complications. Another tragic loss from the "good" kind of cancer. Stinking disease!

I'll try not to be so long before the next update. I know, I know you have heard that before.

Light The Night Walk

Light The Night Walk is one of the major fundraisers that the Leukemia and Lymphoma Society (LLS) has each year at many locations around the country. This year's local walk is at the Dell Diamond on October 28, 2006.

I walked for the first time last year and was able to raise over $2600 with the support of my fantastic family, friends and co-workers. The LLS supports patients and families of those who are battling various forms of blood cancers - leukemia, lymphoma and myeloma. They help fund all kinds of research to find a cure for these diseases. Seventy five percent of the money raised goes directly to patient support and research. Local chapters have paid staff and many volunteers.

This year my wife, daughters, and I have formed a team and will walk as the Wagner Family Team. Supporters carry red balloons and survivors carry white balloons. The local society asked me to be one of their Honored Patients this year. They were looking for someone in each age category and I guess I fill the bill for the the old guy category. Most individuals who are walking and raising funds do so in memory of or in honor of someone they know who either died from a blood cancer or who is surviving from blood cancer. However, there are many corporate and school teams walking who do not know anyone, so the "Honored Patients" help put a face to the disease.

Some of you who are reading this will be getting an email from me in the next week or two asking for your support again this year. However, I would be honored if anyone reading this would like to support me in my efforts. If you are not able to donate, I certainly understand. I would ask that you provide prayer support, if you are so inclined. Together we might be able to help researchers find a cure! Research takes money and that is why I am doing this. There are many clinical trials taking place with new treatment options that weren't available to my dad just a few short years ago. Fortunately the type of leukemia I have is very slow and I hold out the faith and hope that a cure will be found in time that I and many of my cyber friends at acor.org and cllforum.com who are fighting this disease will benefit from that discovery.

My fundraising site is at: http://www.active.com/donate/ltnSanAn1/1949_jtw890

Cheryl's is at: http://www.active.com/donate/ltnSanAn1/1949_cwagnerLTN6

Cheri's is at: http://www.active.com/donate/ltnSanAn1/1949_cgrayLTN8

Cindy's isn't quite set up yet, but it will be soon and I will edit this post and post it then.

Just to let you know, I am feeling really well. I went to my primary care doctor this week for refills of my regular medications. He did a CBC, which he never had done before and my results were terrific! WBC 5.0, RBC 4.52, Hemoglobin 15.2, etc., etc. Everything but platelets were in the normal range and they weren't bad at all at 128. He always checks my cholesterol, blood sugar and liver enzymes. My cholesterol was the best ever - 133. Triglycerides were 79, a personal best. Three years ago they were hanging out in the 600 range, ouch! For the first time ever the good cholesterol, HDL, was in the normal range, 40. Miraculously, and I don't understand how it could be, but my A1C (3 month blood sugar test) was 5.2, well within the normal range of 4.0 - 6.0.

So, as I told the folks over at www.cllforum.com, I think I found the cure. A nice, relaxing cruise!!! Now, if we can just get funding for some clinical trials. Maybe I will contact the LLS. I think Hawaii just might bring my platelets up!

Busy Times

Some very good friends of mine, Paula and Earl Dunn (he was my pastor for many years in San Angelo, TX), wrote to me and asked me if I was OK. They said I had been "strangely silent" since my last post on the spammers. Well, I am doing fine, but have been quite busy with all kinds of stuff happening. I will try to give you some highlights without going on too long, not my strongest point.

Last week I was in El Paso, TX from Monday through Friday conducting a training. In case you didn't see it on the news, El Paso had severe flooding all week. And this in a desert area that only receives about 6 to 8 inches of rain an entire year if they are lucky. I arrived Monday afternoon to rain and temperatures in the 70s (most of the country was baking with temps over 100!). It had already been raining most every day for 5 days. Tuesday morning while in class it really began to pour. We went down stairs on break and watched as water poured down the street. About 30 minutes after resuming class, someone came in and told us if anyone had cars on the street we better move them now as a car had already floated down the street and was a block and a half away. I had parked in the garage but my co-trainer, Amanda's car was on the street as were some of the cars of participants. Water was already up to the door of her car and a participant's car in front of her's had water part way up the door. Amanda started to cross the street to get to her car, but the water was up to her knees and she had a skirt on. So, one of the male participants rolled up his pants and ventured out into the water. Amanda's car only had water on the floorboards, the car in front of her had lots of water. They backed them up into a reserved parking lot and when the other fellow opened the doors water just poured out. Looking down the street we could see cars under water and people wading in water up to their waist and above. I have only seen that on TV before! We went back to class. Lunch time it was still raining, but not as hard. Folks were able to go out the other side of the building onto another street that was steeper. Although water was running in the street, it was not over the sidewalk, so they could walk up the hill to a restaurant a block away. By one o'clock the rain stopped for awhile. At two o'clock it was announced the agency we were at was shutting down because the flood waters were receding, but another large rain cell was on the way. The interstate was closed in both directions. My hotel was over by the airport on the east side of the city and the heaviest rain had been on the west side. The normal drive time was 10 minutes. Since the interstate was closed, all the cross streets that you could get down were jammed with cars. It took more than an hour and a half to get to the hotel. The street was full of debris and landscaping rocks that had washed from businesses and homes. And this was on the "good" side of town that hadn't received as much rain. Radio reports said one area on the west side had gotten 13 inches! It was supposed to rain the next day, but it was sunny and allowed things to begin to drain and dry out. However that night more large storms came in and more flooding. When I first woke they said the interstate was closed again. However by the time I had to leave all but one west bound lane had opened. Because of concern of an imminent dam break on the Mexican side of the border, the night before a large area of downtown was evacuated and I didn't know if our training site was included. It turned out that the evacuation area stopped a couple of blocks away from where we were training.

Thursday was my birthday. My co-trainer had the room decorated with a sign and horns and party stuff on the tables. Later that day they brought in a decorated cake with candles. That was so nice of her! Cheryl was upset I was gone because it was the first time in 42 years we had been apart for my birthday. Birthdays are not as important for guys, I don't think. We celebrated as a family on Sunday after I got home.

The rest of Thursday was uneventful, other than light rain. Friday afternoon, just before the training ended, very heavy rains moved in. However this time it was on the east side, the airport side. When I left the training site, the interstate was again shut down and reports on the radio said heavy flooding was occurring near the airport. Initial reports said a dam on the military base by the airport had broken. Later it was learned that it had just overflowed and was causing flooding. Cars were under water at a restaurant next to the hotel I had stayed at and less than half a mile from the airport. After two hours of trying to get over there and making little progress on an increasingly flooded street, I pulled off into a shopping mall to wait it out. Fortunately my flight wasn't until 9 p.m. The rain stopped and I was able to get to the airport about 7:30. I was glad to be leaving!

The hotel also lost Internet connection on and off, mostly off, during the week and I felt lost and "disconnected." I am very sorry for the residents of El Paso and the people on the Mexican side of the border. Thousands of people in El Paso were displaced and hundreds of homes were destroyed beyond repair. The TV at the airport showed cars and trucks buried under tons of mud and homes filled with mud. Most of the hardest hit homes were in poorer sections, although some affluent areas were also hit hard. Of course, who carries flood insurance in the desert? So most were uninsured. Here are a couple of private citizen's pictures I pulled from the net:

MUD:

The water had rushed through the back wall of this new Blockbuster video store and broke it down, it then collapsed the side walls. The news said thousands of videos were scattered around the neighborhood for several blocks!

I saw much worse video of much higher water on the news reports, but those pictures can give you some idea. Really unheard of for El Paso.

I also want to mention that my birthday, August 3rd, is shared by Earl Dunn - of course he is MUCH older than I am. Many different years we celebrated in person together. We always exchange cards, but this year, for the second time, I didn't get one out to him. I could use the excuse I use for everything now, "chemo-brain," but I can't because I did think of it in advance, I just put it off too long. Sorry, Earl. So, here, for all the world to see, I want to send you happy belated birthday wishes and wish you a happy birthday for next year in advance in case the same thing happens :)

Also, David Emerson, whom I have written about here and who has his own blog documenting his battle with prostate cancer, celebrated his 15th wedding anniversary with his wonderful wife, Mary on August 3rd. I watched a video clip of him doing an interview on his local TV station. He was terrific. I would give the link here, but it expires tomorrow morning.

So, to continue my personal soap opera, I got back home from El Paso very tired about 12:30 a.m. Saturday morning. When I went to get the mail the next day, I noticed "dirt" on the floor by our coat closet. I asked Cheryl about it and she didn't know what I was talking about (not too unusual an occurrence, lately). I opened the closet door and was greeted with a large pile of attic insulation and a very soggy ceiling that was now on the floor and laying on the closet shelf on top of Christmas wrapping paper and ribbon. Oh, and the coats were dripping wet, too. Our air conditioner unit is in the attic (yes, they do that here in this part of Texas) and it had sprung a leak. There were water spots in the ceiling in the living room by the closet and around on the other side in the laundry room and water streaks down the walls too. We spent time cleaning up the mess and the carpet was all stained from stuff on the floor. After moving the piano in the living room, we saw stains there too on the carpet. The A/C repair man spent three hours in the hot attic fixing the leaks. The estimators for the insurance company came yesterday. All the carpet in the closet and living room/dining room will be replaced. Of course the closet will be totally redone. Because we have an open floor plan, the entire ceiling will be repainted -- living room, dining room, kitchen, family room and hallways up to the bedrooms and bathrooms. The entire laundry room will be repainted, too. So much fun!

I had my dermatology appointment on Monday and two probable skin cancers were removed. One on the top of my head and one on my chest. Another area on the top of my forehead was frozen off as she said that was a pre-cancerous area. I now look like Mr. Gorbachev with the spot on my head. The lab reports on the spots she cut off will be back in two weeks.

After that, I headed over to the oncology lab for my latest blood work. It looked some better in most areas. Red cell count dropped some, neutrophils (infection fighters) were down some, platelets came up to 96 -- I had hoped they would be higher, and white count was just barely below normal range. Overall pretty good. The nurse told me verbally that my protein level had dropped more and it had been low for some time. I asked her what I should do about it and she said eat more meat and dairy. Hmm, I have one to two meals a day with meat and have milk on my cereal every morning. I don't need to gain anymore weight. But I cooked T-bone steaks Monday night and ate a whole one. Hey, have to follow medical advice!

I was supposed to have the oncology appointment yesterday. Shortly before I had to leave (Cheryl already left her work), the nurse called me and said Dr. Netaji was canceling the appointment. He wants me to have the bone marrow biopsy and a PET scan before he sees me. So they are being set up for next week. I reminded her that I wanted to be under sedation for the biopsy and she said that is the only way they do them. YEA! If you remember, I have had it done both ways. The sedation was great. The one done at MD Anderson with a local was horrible because they couldn't get the local to work after several tries. Finally they just did it. I am teaching in class all next week, but I will be here in town in my own office building. Because it is a large class, there are two other instructors with me so I will be able to get away for these tests.

Yesterday, after the adjuster left, I went over to the Leukemia/Lymphoma Society's office. I am signed up again for this year's Light the Night fundraiser (many of you will be hearing from me later on this). Last year, thanks to generous friends and family, I raised over $2,000! The walk is late October. They also talked me into being an "honored patient" for the walk. At first I said no because the other term used is "honored hero." I certainly wouldn't begin to call myself a hero just because I have cancer and have undergone chemo. That term doesn't fit for me. Heroes are the firemen and policemen who rushed into the World Trade Center, they are the men and women serving in Afghanistan and Iraq, they are the men and women who risk their lives everyday serving and rescuing others. I will accept the term patient, but not hero. Fortunately the paperwork giving them permission does say "honored patient" so that made it easier to say yes. They wanted three patients of a wide age span (guess which end of the span I am on!) to put a face to the disease for the corporate teams that might be walking and raising funds without knowing someone personally who is fighting a blood cancer.

I think that about catches up on everything, whew! I have been really tired all week and have been falling asleep early in my chair. Sometimes I wake up and come out to the computer for a bit and sometimes I just head into bed. I am pretty much caught up reading emails and posts over on the CLL Forum and the ACOR list. Funny how you can get so far behind so fast.

I don't know how some of my fellow bloggers do it by posting most every day. I keep telling myself that this is the day to update and then something always happens and it gets too late. I admire the folks that are able to do it. If I did, my individual posts wouldn't be so long! Well, it is now 1:15 a.m., and even though I have already slept several hours tonight, I need to get to bed. I will pay for this tomorrow.

As always, but I never want to forget, thank you all for your concern and most importantly, your prayers!