Tuesday, April 28, 2009

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?

Saturday, April 25, 2009

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

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

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

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

Finally after two limps around the kitchen, I had to sit down, catch my breath, look up the happy maids’ phone number in the yellow pages, and finish reading the details of the letter. The first sentence in the first paragraph said, “Good news!” They got that right! I was smiling ear to ear – even while huffing and puffing. But wait…what’s this? What did that say? I had to read it twice to be sure.
“The economic recovery bill that President Obama signed into law in February 2009 provides for a one-time payment of $250 to Social Security and Supplemental Security Income (SSI) beneficiaries.”
What? $250? Only $250? And EVERY old person is getting this? I’m not special? And Congress will probably raise my taxes next year by $350 to pay for it. The extra $100 to cover mailing and handling with an extra piece of bacon thrown in.

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

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

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

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

Monday, April 20, 2009

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,
Hong Kong,
New Zealand,
Republic of Korea,
Russian Federation,
Saint Kitts and Nevis,
Saudi Arabia,
Serbia and Montenegro,
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.”

Tuesday, April 14, 2009

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.

Sunday, April 12, 2009

He is Risen! He is Risen Indeed!

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

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

I hope you all had a wonderful Easter.

Monday, April 06, 2009

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

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

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

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

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

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

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

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

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

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

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