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.

My Last Hurrah

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

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

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

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

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

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

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

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

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

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

One Year Anniversary Since Chemo Therapy

I guess I could toast my anniversary, but I don't drink and besides, that is rather a strange anniversary, but certainly one worth celebrating.

I went to the oncologist Monday but I have been waiting to post because I thought I would have some other blood test results back. However, they aren’t back yet so I will post this as I had promised a couple of folks I would get a post here by today. My blood tests this time were decidedly mixed results. He didn’t test the IGg level this time, so I don’t know what that is. My white blood count and my red blood count were both in the normal range for the first time since my last round of chemo, one year ago today! I am not anemic.

However, my absolute lymphocyte count continues to slowly climb in the area above the normal range (lymphocytosis), my platelets continue to decline (thrombocytopenia) and dropped to 90 (90,000/mm3) and my lymph nodes continue to slowly increase everywhere (lymphadenopathy). So, this technically puts me into Rai Stage IV of the four stages of the disease or stage C of the Binet system that has stages A, B, C. But this only sounds worse than it is. As they say, “Been there done that.”

“Rai: Stage IV CLL is characterized by absolute lymphocytosis and thrombocytopenia (<100,000/mm3)>

Binet: Clinical stage C CLL is characterized by anemia and/or thrombocytopenia regardless of the number of areas of lymphoid enlargement (Rai stages III and IV).”

Again, they don’t treat numbers, only symptoms. My disease primarily presents as the lymphoma portion so my blood tests don’t usually look too bad. Even before treatment, my white count and lymphocyte count never did get too terribly high. To show you that my doctor isn’t all that concerned, he is skipping my August appointment and I don’t go back until September. If my platelet count gets to about 50 he will order another bone marrow biopsy to see what is going on in there.

I did start the testosterone replacement therapy. I am using the gel that I rub into my skin once a day. However, I am starting at a very low dose. At the end of the first week I thought I saw a very big difference because I actually had energy over the weekend even though it had been a week I was out of town. I was thrilled! But, it didn’t last long. Cheryl thinks my energy level is better than it had been and I guess it is, but I don’t feel as energetic as I did that first weekend. I still nap in the evening and during the day on weekends. Someone asked about sleep apnea, but I don’t see any signs of that. I sleep wonderfully during the night, rarely snore, and rarely wake up at all until morning. I don’t even turn over very much and the covers are rarely disturbed very much.

Normal free testosterone level is 50 – 250 pg/ml and mine was 21. I am on a very, very low dose of the gel, in fact only one quarter of the dosage listed on the package. My doctor didn't want to increase it yet until they checked my level now. That is the test that isn’t back. The therapy can raise blood sugar (I have noticed that a little) and there is some indication that it can have negative effects in the area of prostate cancer. There is controversy that it actually causes it, but there is little doubt that if you have prostate cancer the therapy will accelerate the disease. Of course having CLL/SLL puts you at risk for other cancers anyway, so it is walking a tight rope.

I now have another ear infection. All last month my right ear would start to ache and then just as I was about to decide to go to the doctor, it would stop. This happened three or four times. Monday afternoon, after my oncology appointment it really started to hurt and it hadn’t done so in over a week. So I made an appointment with my primary care doctor. I now have some antibiotic drops to use for ten days. Umm, yes, I know my oncology doctor said I would do the IGg infusions if I had another infection. I guess I will let him know in September. HA!

Only two more full weeks at work! Technically I don’t retire until August 31st, but I only have to work one day in August as I still have enough annual leave left to take off the whole month. When I was first diagnosed, I was so fortunate that I had so much leave in the bank. I had rarely missed a day ill in the years I worked for the state, so I had over 700 hours of sick time saved up. I also always kept the maximum number of carry over annual leave days saved. I did this just because of my age I thought if I ever had a heart attack or some other major illness, I would need the time. I am thankful I did this. Even with all of the doctor’s appointments, chemo treatments and going home early because of not feeling well, it wasn’t until this February that I exhausted all my sick leave (I still get 8 hours each month). However, I have 196 hours of vacation time still left. Hurray. I only have one more class to teach and that is next week. I will be in Fort Worth and it is a course I wrote. This will be very strange because I have been teaching since 1971 when they made me an instructor in the Air Force. I am looking forward to it.

On another note, please keep David E. and his wife Mary in your prayers. He is my “cyber friend” that I have often written about. His advanced prostate cancer, which had spread to his bones, is on the march again and it looks like he may be facing chemo treatments now. He has been trying to avoid that as long as possible by using other treatments that have helped but now have seemingly stopped working, or at least not working as well. He will have to make a decision at his next appointment in August. Starting chemo is a scary time for anyone!

As always, I appreciate your prayers, your concern, your comments here and the many I receive by email. Knowing people care is more important than I ever realized before. Thank you.

Dr. Appointment & Some Silliness

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

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

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

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

IN MEMORIUM

February 14, 2007 – June 13, 2007

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

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

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

Good Grief! I've Been Wrong All These Years

I am so upset. I have been wrong since 1950! That is when I learned, or thought I had learned how to do it. How could this be? I only found the error of my ways two weeks ago. Only through the power of the Internet did I discover I have been doing it wrong all these years. What is it, what is it, you ask? 57 years of tying my shoes incorrectly!! I am so embarrassed. My bows were crooked and floppy and I never knew why and I turned a blind eye to my transgression. How many people have been secretly laughing and pointing at me behind my back? All those years of sitting in classrooms, waiting rooms, airport terminals, standing in front of classes and even standing for inspection in the military. And nobody had the common decency of pointing out my folly? Not even my closest friends? How could this happen? My parents failed me. My grade school failed me. My Kindergarten teacher failed me. But a complete stranger came to my rescue by having the decency to make an entire website dedicated to the proper art of tying and lacing up shoes. Ian’s Shoelace site finally set me straight. Thank you, Ian. (Actually if you Google shoe tying, you will find MANY sites dedicated to this art, including lots of instructional video.)

I feel like I should sue someone for all those years that are now causing me mental anguish. But who should I sue? If I sue my 92 year old Mom, all I would get is maybe a case of chocolate Boost, a box of Depends, and a picture of my youngest brother Bill (Mom always liked him best). I doubt I could sue Miss Jennings, my kindergarten teacher. Shoe tying and counting to ten was the final exam and requirement to graduate into the first grade. I even think I could hold her responsible, but I doubt she is still alive. You see she was my Mom’s kindergarten teacher and my older brother’s teacher too. So that would make her one hundred and gazillion years old. Maybe I could sue the school? If they hadn’t put that elevated, table-top sandbox in the corner of my Kindergarten classroom, I might have spent less time playing in the sand and more time practicing the art of proper shoe tying. But I don’t know if Lincoln Elementary School in Johnson City, New York, still exists. So who is left? I don’t know. Any suggestions are more than welcome.

So what was my error? I was making Granny knots!! I learned back in Boy Scouts that you should never tie a Granny knot, only square knots. “Right over left and left over right, makes the knot neat and tidy and tight.” But even the Boy Scouts didn’t help me transfer that knowledge to shoe tying. Granny knots caused my bows to be crooked and floppy. What can be worse than crooked, floppy bows? Actually learning to tie my shoes properly has been difficult. I now have to stop and think about it and sometimes start over. Also, like someone in recovery, I am now highly critical of others and find myself looking at other’s bows to see if they are floppy or straight. When I see a crooked, floppy bow I just shake my head and silently pity the person – but I would never point and laugh behind their back. I haven’t quite worked up the courage to actually correct someone, yet – don’t sue me! So, to help you out, here are pictures of the end result of the correct and incorrect way of tying shoes.




Now look down at your shoes. If the bows match the first picture, congratulations, but if they match the second picture, click on the link to Ian’s site and learn how to do it correctly. http://www.shoe-lacing.com/shoelace/slipping.htm. If you looked down and saw sandals or flip-flops, then good for you. If you saw penny loafers, you are older than I am.

Since this is my leukemia/lymphoma Blog, I guess it is only fair to give an update. I go for my blood work Monday and I expect that my red cells may have decreased. My fatigue is much more pronounced again. When I went to Las Vegas with my daughter last week, I was in bed the first night at 8 p.m. and the second night before 9 p.m. and had naps each day, too. Who goes to bed that early in Vegas besides Baptists and folks with Leukemia? Oh yes, I forgot, I am both so that explains it. Actually, I did have a good time and saw some neat things on a couple of tours and I will post pictures as soon as I download them. In the meantime, get those shoes tied correctly!

Memorial Day 2007

HEROES UNAWARE

By Mark A. Wright, HMC(SS)

22 June, 2000

I first saw him on a park bench

I've seen him every day

Sitting in a shady grove

Where my children come to play

Sometimes he feeds the birds and squirrels

Or whittles little toys

Sometimes he just sits and smiles

At the laughing girls and boys

And I never paid him any mind

'Till one day just this year

I noticed that he wore a frown

And on his cheek ... a tear.

Well I asked him why he seemed so down

He looked up, began to say

I lost half my friends 60 years ago today

He told me of the terror

As he fought to reach dry land

By the time the beachhead was secure

Half his friends lay in the sand

That was just in one long day

He fought on for 4 years more

And the 60 years from then to now

Have not dimmed His sights of war

He said they have reunions

Just to keep in touch and share

And for each comrade who has gone on

They leave an empty chair

Well, His park bench has been empty now

About 6 months or so

And if I'd never took the time

Then I never would've known

That sitting on that simple bench

With bread crumbs and little toys

Was a man who gave his all

To guarantee my daily joys

So give thanks to all the men and women

Who're still here or have gone before

And made the highest sacrifice

In both Peace time and in War

Because they bought our freedom

Paid their own blood, sweat, and tears

Then endured the heartache of those empty chairs

For all these years

So please do not ignore them

Or speed by without a care

'Cause you never know

When you might pass by

A hero, unaware

We owe a debt of gratitude to all the men and women who paid the ultimate price to secure our freedom and the freedom of others in different places in our world in many different wars. Originally this day was set aside to honor those who died in our Civil War. Now we honor all our war dead.

Since last Memorial Day, nearly 1,000 more men and women have lost thier lives in Iraq. No matter what your political beliefs or what you think of the war itself, we need to remember the mothers, fathers, brothers, sisters, children and other loved ones who are grieving for the loss of that precious life.

Unlearned Lesson

Memorial Day

Of every year

The little valiant

Flags appear

On every fallen

Soldier's grave--

Symbol of what

Each died to save.

And we who see

And still have breath--

Are we no wiser

For their death?

~Dorothy Brown Thompson~

Gee, IVIg for IgG

I had my oncology appointment last week and got all my blood test results. The CBC wasn’t changed too much from last month. Platelets dropped back down, and the lymphocytes went above normal. Here are the highlights with normal range in parentheses:

• Absolute neutrophils 2.0 Low (3.0-7.0) (infection fighter)
• Percent neutrophils 27.5 Low (40.0 – 74.0%)
• Absolute lymph 4.5 High (1.0 – 4.0) (First time since chemo this is above normal)
• Percent lymphs 62.4% High (19.0 – 48.0%)
• RBC 4.46 Low (4.7 – 6.1) (This one got quite a bit better)
• MCHC 36.8 High (32.0 – 36.0)
• RDW 10.6 Low (11.0 – 15.0%)
• Plts 106 Low (150 – 400) (good news is they are still above 100)

However, the big surprise was that my Immunoglobulin G (IgG or gamma globulin) level has dropped way out of normal range. My number was 438 and the normal range for my lab’s test is 723 – 1685. So what is IgG? Glad you asked. Here is an explanation from WebMD:

“IgG antibodies are found in all body fluids. They are the smallest but most abundant of the antibodies, normally comprising about 75% to 80% of all the antibodies in the body. IgG antibodies are considered the most important antibodies for fighting bacterial and viral infections.”

There are other antibodies such as IgA and IgM. However, I think IgG is the only one we can boost through medical intervention. Since this means that I am at quite an increased risk for infection because my immune system is quite compromised, the doctor has to decide when to intervene. The standard criteria for intervention are that the IgG level is below normal and the patient has had two or more infections in the last year. Hmm, guess I fit those criteria. Just since January I have had bronchitis, pneumonia, ear infection and a cold.

So, what is the treatment? Again, so glad you asked. The following is compiled from Wikipedia:

It is infusion of a product called IVIg, which just means intravenous immunoglobulin g. IVIG is an infusion of IgG antibodies only. Therefore, peripheral tissues that are defended mainly by IgA antibodies, such as the eyes, lungs, gut and urinary tract are not fully protected by the IVIG treatment.

FDA guidelines for IVIG state the product should be:

• Prepared out of at least 10,000 different human donors.
• All four IgG subgroups (1-4) should be present.
• The IgG should maintain biological activity and lifetime of at least 21 days.
• Does not contain samples which are HIV, hepatitis B, hepatitis C positive.
• Screened and treated in a manner that destroys viruses.

Well, that all sounds just wonderful, so let’s go do it. Hold on, not so fast. There are some things to consider. First of all, it is VERY expensive. It is taken from plasma from donors and if you read above, 10,000 donors is a lot. (I have read elsewhere that it is taken from between 3,000 and 10,000 plasma donors.) Dr. Netaji said it is about $10,000 for the treatment. It can cost up to $90 per gram! However, Dr. Netaji said the insurance company reimburses him $15 per gram less than what it costs him. That means it would cost him a couple thousand dollars to treat me in his clinic. In order to get around this, he would send me to the hospital because the insurance company reimburses hospitals at a higher rate….sheesh!

The treatment is given over several hours and repeated for 2 to 5 days and then often repeated again at one to three month intervals until a satisfactory response is gained. So that means I could be in the hospital up to five days! The “common dose regime” is .2 to .4 grams of IVIg per kilogram of weight for four consecutive days to a total of 2 grams/kilogram. So, for my weight that would be 140 grams total, if I did my math right.

Also, there is a chance of adverse reaction, especially the first time, and that is why it is given very slowly. What are the adverse reactions? You are a curious reader, aren’t you?

Mild-to-moderate headache, chills, chest discomfort may develop in the first hour of the infusion and usually respond to cessation of the infusion for 30 minutes and resumption of it at a slower rate. Fatigue, fever, or nausea may occur after infusion and may last as long as 24 hours. Other side effects include, dizziness, leg cramps, muscle aches and pains and pain and tenderness at the injection site, difficulty breathing, shortness of breath, wheezing, chest pain or tightness, seizures or convulsions. A severe anaphylactic reaction may occur but this reaction is rare occurring in about 1 out of 1000 people. I also found a bunch of other rare reactions such as renal failure and even skin falling off the hands and feet – what a lovely thought.

I do have to be careful because some brands are made with a fairly heavy sucrose base and that would adversely affect my diabetes. IVIg is in short supply now and this is a recurring problem.

So what did we decide to do? Alright, I’ll answer one more question. We are holding off for right now. BUT ONLY FOR RIGHT NOW!! (I sent an email to my SS class last week and a few people thought I was refusing treatment for good – nope!) If my level drops more next month, or if I get another infection, we will do the treatment. Because it is in short supply, I believe other folks need it much worse than I do right now. My ear infection finally cleared up a week or two ago and I haven’t had any new infections since January or February.

And now class is dismissed. So glad you could join me for this month’s lesson on your way to an honorary medical degree. Oh, one more thing before you leave. Please keep me in your prayers and pray that my level doesn’t drop any further and that I don’t get another infection. My daughter, Cheri, is going to a wedding in Las Vegas next week and I am going to fly out with her on Monday so that she isn’t traveling alone to Sin City. We will come back Thursday night. I need to stay well for her sake. Since I don’t gamble, and don’t even like it, in addition to site seeing around the city, we are going to drive out to Hoover Dam and do the tourists bit there.

I know, I know, I am a Lousy Lymphomaniac!

Well, my good friend, Paula Dunn, asked, "Has your broken arm healed yet?" Ha! I wish I could say that is my excuse for not posting, but it's not. So why haven't I? I guess I was just sick of Leukemia for awhile. I dropped out of reading my ACOR list, my cllforum, my CLLCfriends forum (CLL Christian friends), and the various blogs I kept up with. I guess I just needed a mental holiday. I have been feeling somewhat this way since early last fall when we went on the cruise and I barely gave cancer a thought, but this has been a particularly strong feeling since the first of the year.

Having read numerous other blogs, I have noticed that a good percentage of the folks did the same thing at some point; obviously not all, but quite a few. I just recently celebrated my two year cancerversary and two years is a long time to have cancer constantly on your mind. I think I am out of that mood now. For the last week I have pretty much caught up on my forum reading, I am about to tackle the ACOR list and I started reading some of the blogs I used to check every day. It is strange because I never forgot about any of the folks and those fellow blogger and forum members remained in my prayers. I would pick up my laptop in the evening and think I would go do some reading, but then would end up just mindlessly playing solitaire before heading off to bed.

OK, I will get up off the psych couch and catch you up some on what has been happening in my world. The coughing from the pneumonia finally went away, but during that time my ears had become infected. They ended up with fluid and stopped up. The infection got cleared up, but the blockage in my left ear has remained since January. We tried several medications but nothing cleared it up. I finally got in to the ENT specialist today. I do have fluid (duh!), and hearing loss in my left ear. However, he really doesn't want to take any drastic measures yet as he is afraid of giving me an infection. He wants to wait a couple of more months at least. So, I am back to using the nose spray hoping to clear it up.

Since I last posted I have had two blood tests. The February tests looked pretty good and my neutrophils (infection fighters) were up in the normal range for the first time in a couple of years -- however, that was because I was still fighting infections, and that was good because it meant I was getting an immune response. The end of March's blood tests didn't look quite as good and everything but platelets got a little bit worse and the neutrophils dropped quite a bit. The good news was that platelets were all the way up to 129! The results of the CT Scan showed the lymph nodes are growing again -- some in the stomach are almost pre-chemo size -- and the neck ones are all back, but not up to the size they were before chemo. Again, my main complaint is being tired. I was only out of town training one week so far this year. It was a couple of weeks ago and the night after I got back, I slept 16 hours and the next night slept another 11 hours -- a great way to spend a weekend. So you can see why I am looking forward to retirement. I will miss training greatly, but it just wipes me out too much. Last week I asked my oncologist why, since the blood tests look relatively good, why am I getting so many infections and why am I so tired? He just looked at me and said, "Because you have leukemia!" Oh, OK, I forgot. He is going to check my IGG levels in case that is why I am getting multiple infections. However, he is getting more and more confident that it may be quite a long time before more chemo because my absolute lymphocyte count is holding really well.

Now, for my most exciting news. I saw my Endocrinologist this morning for my diabetes and have added yet another medication to my pharmacy. (I currently take 14 pills a day, plus the nose spray.) This one is cool, though. It is made from lizard spit!!! Well, she said saliva, but it really is spit. And not just any old lizard. No sir, it is the beloved Gila Monster. How many of you can say you inject yourself with Lizard Spit???? I always wanted to be unique.

Yep, now I am part lizard (when they were growing up, my kids already thought I was part monster when I was around their boy friends). And I inject it into my stomach twice a day, just before breakfast and just before dinner. Since I am already part mouse from the Rituxan infusions, and now that I am part lizard, I believe my inner lizard and inner mouse have genetically combined and I am now a -- louse! And that, boys and girls, is why I am a lousy lymphomaniac.

From information I found on the web: "The Gila monster is a rare lizard with deadly venom in its saliva. Researchers have used the saliva to develop a new drug called exenatide. It’s injected twice a day to help type 2 diabetics keep their blood sugar under control.
“We think that the effect of the drug has something to do with the fact that this animal eats two, maybe three or four times a year,” says diabetologist John Buse, M.D., Ph.D., of UNC Diabetes Care Center in Chapel Hill.
A hormone in the lizard’s saliva slows its metabolism between meals and keeps its blood sugar low when it does eat. It seems to have the same effect on patients with type 2 diabetes.
Since Gila monsters are at risk of becoming an endangered species, exenatide is now made synthetically and not from the lizard."

OK, so I am only synthetically part lizard, but hey, just be careful next time you invite me to dinner. Only serve me raw eggs, please:

On a very serious note, today was the horrendous shootings at Virginia Tech. The talking heads on TV are all trying to explain what happened. But how can anyone explain such senselessness? Please join me in praying for the wounded survivors; those who were in the buildings and witnessed the horror; the students, faculty and staff of Virginia Tech; and especially the family and loved ones of those who lost their lives.

I'm Still Here!

Sorry for the long silence again. So what has been happening? Last time I posted I had that pesky itching rash. It eventually cleared up, although it kept trying to come back, but the prescription cream worked really well. It has been several weeks now since it tried to reappear.

Since I last posted, several important dates passed. One was the first anniversary of this blog. When I started it, I posted every day and it was quite therapeutic. What's happening now? Not sure, but that is the subject of my next post which I have been formulating in my mind. December 23rd was Cheryl and my 39th wedding anniversary. For the first time in many years, we actually went out to a real restaurant that evening. Previous recent years have included, cereal at home, KFC take out, hamburger, nothing, and Luby's cafeteria. We really know how to celebrate! Actually, Cheryl is usually so frazzled trying to get ready for Christmas that she is too tired to go anywhere. This year, although we didn't even start shopping until that week (totally unheard of as the shopping usually starts in January and lasts all year), the afternoon of the 23rd we were totally ready and all gifts were wrapped. That has never happened before. It wasn't until that morning we were even sure if we were having our traditional Christmas Eve dinner with the family here as both girls' plans were up in the air. As it turned out, we even were having extra guests -- Cheri's in-laws. So I went to the store, bought a huge turkey and fixings for 13 people. Christmas Eve and Christmas day was a wonderful time of family and celebrating the birth of our Lord. Of course New Year's was the usual -- I watched on TV the ball in Times Square drop and Cheryl went to bed early. She even slept through all the fireworks in the neighborhood.

In December, our work put on our HIV conference in Austin. We had speakers from around the world and about 900 participants, I think. I was in charge of the AIDS memorial display of quilt panels. I ordered 22 of the 12'x12' panels and had them displayed in a giant circle in an empty ballroom. Each 12'x12' section has six 3'x6' individual panels made by loved ones of those who have died as a result of AIDS. Each one is totally unique and often very touching. We had panels from celebrities, men, women, boys, girls and infants. Very sobering. In the center of the room I had an oval table with two large round red bowls with floating candles and a large white pillar candle in the middle on a tall candle holder. A red ribbon was on the white pillar candle. In the center of the room were two couches and two easy chairs. It really was quite moving and a very nice memorial.

I was really late putting up the Christmas lights this year. They were only up for two weeks and I didn't have them all out either. I am the Clark Griswold of the neighborhood with all my lights and they normally go up on Thanksgiving weekend. This year was a little more "normal." They still looked nice.

So, what has been happening health wise? Glad you asked. My blood tests in the beginning of this month looked very good; my platelets even came back over 100 again, to 105. So I had another pass on chemo. However, since my lymph nodes are swelling again, including in my neck, my hematologist/oncologist ordered another CT Scan -- sigh. I'll be glowing in the dark before long. I won't know the results of that until I see him again on February 8th. Right after I saw him, I had an attack of what I assume was shingles without the actual skin outbreak -- yes that can happen. It was on my left arm and I couldn't wear my watch and even clothes hurt it. It was from my wrist to nearly my elbow on the underside. It would wake me up in the night hurting so badly. It also felt like electric shocks going through it quite often. Shingles are inflammation of the nerves. I was teaching a week long class that week here in Austin. Then, as that was clearing up I started catching a cold. At the same time we had a really bad ice storm that shut everything down for three days. I didn't go to the doctor because I was sure it was just a cold. I stayed home from work but still didn't go to the doctor as Cheryl was urging. Of course, by the time the weekend came, I was a lot worse. So, Monday morning I finally went to the doctor as Cheryl kept saying. Should have listened to her -- I hate it when she's right, ha! I had pneumonia in my right lung and bronchitis in my left. The doc prescribed a brand new broad spectrum antibiotic that is only once a day for seven days. By the second day on the meds, my fever went away and I have been feeling better, thank you Lord. I really was feeling pretty rotten for awhile. My cough is getting better every day. I went to church today and I will be going to work tomorrow. I haven't been in the office for three weeks now. Funny thing is, I have no desire to go in, either, and I do like my job. Oh well.

And that brings me to another decision that I haven't posted here yet. I am planning on retiring this coming September. I will be 62 in August and eligible for social security reduced rate. I had planned on working until 66 and collecting full social security at that time. However, since this pesky disease raised it's ugly head, I decided to retire now while I can enjoy it. I like teaching and training, but when I come home from being gone a week, I am just way too wiped out. Standing all that time also hurts my back, too. (Oh yea, I had another bone density scan and the osteoporosis is quite a bit worse too -- "severe danger" of spinal fracture and "increased danger" of hip fracture. So besides the Fosamax, I am also on calcium supplements. That brings me up to 14 pills a day, and I'm not even on chemo! -- whine, whine, whine, whine)

So, what will I be doing in retirement? If possible, I would like to work part time for a local HIV/AIDS project and do counseling and testing a couple of days a week -- what I am training folks to do now. Also, Cindy's young lady that watches my grandson Jonathan and feeds their dogs when Cindy is traveling will be going away to college. So, I will take over those duties. Also, when she and Corbin get their RV and boat storage business off the ground, I may take care of that for them initially until it starts to make enough money that Cindy can quit her job. I also want to do some fishing. I have taken the grandsons a couple of times this year, but I really would like to be able to do it more often. Cheryl is also looking forward to me being a full time househusband and taking care of the house. We share those duties now, so it won't be much of a transition. I don't think I will be getting bored at all. We worked out the finances and are pretty sure we can do it. Just to be sure, starting in February we are planning to live only on what we think I will be getting in September. We think it will "only" be a $12,000 dollar a year drop. Now when Cheryl retires in a couple of years, that is when the miracles will have to happen. We shall see.

Cindy had her surgery, and although the recovery was a little slow for her, she is fine now. Cheri is still dealing with some things. She did have another ultasound a couple of weeks ago and although the possible tumor didn't shrink, it didn't grow either. She is still having a great deal of difficulty sleeping as a result of some medications to the point she even went to a sleep clinic last week to spend the night. Although she was hooked up to all kinds of wires, she said she slept five hours, the best night's sleep she had in a long time. She asked if she could come back the next night -- ha!

Well off to bed as I need to look awake tomorrow at work.