YES, I'M STILL HERE AND ALIVE

Wow, no post since October 2009?  Six years and four months???  Where has the time gone?  I guess I was having so much fun I didn't notice.

I have thought many times I needed to put up a post and then didn't.  Not that I'm a procrastinator or anything, but that is ridiculous.  Tonight I got an email from a person that might be newly diagnosed with CLL.  He will find out later this week.  The email was rather tentative but basically wanting to know if I was still alive.  When I mentioned it to Cheryl, she said she has felt for a long time I really need to start writing on here again.  I guess I can spend a little less time on Facebook and playing games and devote a little bit to posting here sometimes.  By the way, the fellow that contacted me with the email connected with me on Facebook and we spent a long time chatting back and forth in private message.  I hope I helped him some.

There is no way I can cover all that happened in the last six years so here is a wrap up:

PERSONAL LIFE STUFF:

1. My mom passed away four years ago at the age of 96.
2. We welcomed grandchild number five, a sweet boy named Jack who just turned six two weeks ago.
3.  The three oldest grandkids, Jonathan, James, and Holly, all graduated from high school.
4. We welcomed a great grandson named River.  Jonathan's little boy.  A cutie not yet a year old.
5. We moved to upstate NY three and a half years ago.  I know, crazy, right?  I have a brother in Manhattan, and one in Endicott.  Cheryl has seven brothers and sisters in the area where we moved.  Some of them not doing so well health wise and it was time to reconnect and help out where we can.  They help us, too.  We moved to Clinton, just outside Utica.
6. We travel to Texas a couple of times a year and also spend time each year in Myrtle Beach in February and March.  (we are in Myrtle Beach now)
7. Cheryl and I celebrated 48 years of marriage this past December.
8. We still have our cabin on the small lake.  But it is for sale...sort of.  We just don't push it too hard.
9. I rediscovered that I hate snow as much as I did when we moved out of NY in the 1960's.

HEALTH STUFF:

1.  I had three stents put in my heart two years ago.  One blockage was 100% and 90% for the other.  Still watching a couple around 60%.  No heart attack, thankfully, just angina. I was awake through the whole procedure and found it interesting, even when they were having trouble.  Didn't even feel nervous. My heart was acting up after and they wouldn't let me go home until I had "P" waves.  Still didn't let me go when I waved my urine bottle at them.
2.  Also two years ago, I had surgery on my right leg twice to get rid of squamous cell skin cancer.  Didn't get it all the first time and had to go back in "deeper and wider."
3.  Again two years ago I had my chest port removed because it stopped functioning after nine years.  They were supposed to put a new one in at the same time but it took over an hour to get it out and they said my body was showing signs of a lot of stress, so they didn't put the new one in until a month later.  That went fine. (Five surgeries that year)
4.  Had cataract surgery on both eyes last year - and I still wear trifocals! But I do see better at night.
5.  I continue with my IVIg infusions, but now it is only every two months as the IgG levels are holding longer.
6.  Arthritis continues to get worse where I have to use a cane sometimes.
7.  I had four rounds of chemo in 2014.  This time I had Rituxan and Bendamustine (Treanda) that was approved for CLL in 2008. I was on blood thinners at the time and my platelets were low, so we didn't do one of the newer treatments because of possible internal bleeding.   That chemo regime knocked me on my butt more than the Cytoxan, Rituxan, and Prednisone I did the first time.  We did it because my lymph nodes exploded.  My neck got so big it was difficult to turn my head.  Many internal ones were 7, 8, and 9 centimeters in size. I only did four rounds for several reasons:
    a.  The nodes went down quickly.
    b.  As I said, it was kicking my butt
    c.  It was knocking my blood counts down too low.
    d.  I told the doc I was too busy to do more.  Really. He said, "OK, we aren't trying to cure it, just knock it back and we have.
    c.  I continue to get fatter.  I have gained 112 pounds since diagnosis in 2005.  I try to blame it al on steroids, but eating with little physical activity has a lot to do with it too.

So how am I doing now?  My blood work last month looked the best it has since diagnosis.  My red count had been quite low since treatment and that reached normal.  White count and platelets also came into normal range.  So the leukemia is behaving.  Not so much the lymphoma part.  My neck nodes are starting to get quite bulky again. In mid October last year they came up quickly and my local onc suggested chemo again.  I said not yet and he said OK he would follow my lead.  The nodes continue to grow some but much slower now.  Also, I will check with my expert specialist at MD Anderson, Dr. Wierda, before doing anything.  We had been planning to do Ibrutinib (Imbruvica) this next time, but now I am not so sure.  It may not be the miracle drug it seemed to be at first.  Although many people have had great results, more are beginning to have complications.  In fact, an oncologist I saw today in Myrtle Beach (for port flush) said she has stopped using it for now.  She had two patients with very severe complications. And two more with serious bleeding issues.  One was in ICU for three months, finally got out a few weeks ago and just went back in this morning.

By the way, that oncologist I saw today said I don't look 70.  If we lived here in Myrtle Beach permanently she would be my doctor.

Well, that is enough for now.  You are sort of caught up on what has been happening with me and you know I am still alive.  See you in six years.... No, I will try to post more if anyone still reads this.

I'm Still Here

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

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

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

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

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

HEALTH UPDATE

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

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

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

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

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

Health Update - More Weirdness

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

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

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

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

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

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

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

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

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

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

The "New Normal"

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

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

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

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

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

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

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

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

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

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

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

Quantity or Quality of Life! Which Would You Choose?

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

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

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

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

Would you still take the chance?

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

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

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

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

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

At one point she writes:

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

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

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

Put the Horse Back in the Stable

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

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

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

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

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

How Did YOU Find Me?

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

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

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

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

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

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

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

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

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

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

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

We Have a Contract!

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

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

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

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

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

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

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

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

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.

Are The Lobby Lights Flashing?

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

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

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

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

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

I just hope Act II is worth the wait.

Naps - Not Just For Preschoolers Anymore

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This and That

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

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

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

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

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

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

It Pays to Advertise

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



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

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


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

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

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

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

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

It was a wonderful day!

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

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

Where Is My Energy?

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

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

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

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.