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!
Showing posts with label itching. Show all posts
Showing posts with label itching. Show all posts
Friday, September 18, 2009
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,
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.”
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.”
Thursday, July 31, 2008
Itching to go on Vacation - Literally
Itching! Rash! Weirdness!...and Trouser Dermatitis
Ah, the joys of Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma. (Many would argue weirdness and I have been together long before my CLL/SLL.) I don't know for sure what causes the itching, but many, many folks with CLL complain about it. I may have discovered one cause in my most recent bout with the madness.
My first bout came a few months after I completed my last round of chemo and I wrote about in this blog in November 2006. At that time the itching was accompanied by rash that was widespread over my body. Since that time I have had a few minor periods of the itching without the rash. I have prescription cream I use if it goes beyond a few hours. I had suspected it was a delayed reaction to the Rituxan portion of my infusions as I had read somewhere that it could happen. However, now it is way too long since I have had Rituxan -- two years. But none of the itching episodes I had were nearly as severe as that first time -- until we went on vacation to upstate NY a couple of weeks ago.
The itching started on my upper legs on the Sunday before we left and continued to get worse each day. I started slathering on the prescription cream (it comes in a large tub), and wore sweat pants to bed so I wouldn't slip off the bed or get the dog stuck to my legs. Wednesday morning on the plane the itching was progressing down my legs while still driving me crazy on my inner thighs and the back of my knees. I willed myself not to scratch the itch, because once I do, it goes into overdrive. Sitting on a crowded plane scratching your legs rapidly with both hands going, "woo, woo, woo," is not cool. My shoes were feeling tight, but I didn't think much about it as that sometimes happens on a plane.We arrived in Albany and were met by two of my wife's bothers and driven to another brother's home in Utica. (He let us use his cadillac for the week! Thanks, Bill!) I tried not to think about the itching, but it was good to get out of my dress shoes. On Thursday, we drove to Endicott to see my Mom and my older brother and his wife. We spent the night there. Throughout the day the itching got worse, my loose tennis shoes felt a little tight. Just before going to bed I looked at my feet and they were really very swollen.
Friday morning the itching was getting worse and my knees didn't want to bend. My shoes were killing me. Finally I tore off my shoes and socks and wanted to take my pants off too, but again, not cool while visiting with relatives you haven't seen in a few years. Cheryl saw my feet were hugely swollen and covered in a red rash. She went and got the ointment and made me pull up my pant legs. A slight, red rash was present, but the swelling was very pronounced. She slathered the lotion all over my legs from just above the knees, down. Normally I have "chicken legs" and little muscle tone anymore, but she said my legs were hard as a rock because they were so swollen. Fortunately my jeans were loose to begin with. My brother gave me his recliner to sit in (why didn't I think of this before?) and I put my feet up.
I knew the redness on my ankles and the tops of my feet was not really a rash as it looked different from the rash on my legs, it did not itch and this happened in November 2006. At that time the dermatologist said the redness on my feet was petechiae - bleeding under the skin due to the swelling. Those of us with leukemia often have trouble with low platelets and when they get too low, petechiae is often a result. Although my platelets are lower than they should be, they are not in the danger area at all. Of course I was beginning to wonder if perhaps they were dropping, but somehow I really did not believe that to be the case. Besides, we had too much traveling to do to take time out to see a doctor!
Petechiae - Sometimes it looks more like pinpoint red spots. If you do a Google image search you will see various examples.
That afternoon we traveled to Morrisville to visit and stay with one of Cheryl's sisters. By that evening the swelling was not quite as bad. I kept them elevated the best I could.
Saturday we traveled back to Utica to have a family reunion of sorts with Cheryl's family. Several of her brothers and sisters get together each Saturday to play cards, but since we were going to be there, all who live in the area came over. We had lots of food. There were about 20 adults and 20,000 kids. I played a few hands of cards but then moved to the recliner so I could keep my feet up. I pretty much kept in the conversation of the card players at the table closest to me, but also somehow managed to fall asleep for a little bit, even with all the confusion. Cheryl wasn't pleased but at least she wasn't real mad -- one of the times CLL diagnosis actually comes in handy.
Saturday night we drove back to Endicott and Sunday morning left with my Mom to drive down to New Jersey to Lake Kittatinny to visit my youngest brother. He lives in Manhatten, but they have a summer lake home there. We finally met little Ruthie whom they are in the process of adopting. A really beautiful little four year old girl. They have been foster parents since December. The itching and swelling was much better and the petechaie was disappearing from the top of my feet, if not from the ankle area.
Sunday afternoon we drove back to Endicott and stayed there until it was time to leave on Tuesday. By this time the swelling was gone. Tuesday we drove to Norwich to visit another of Cheryl's sisters and a friend they used to live next door to, then on to Utica and finally over to Albany to catch an early morning flight on Wednesday (had to get up at 3:15 a.m., Texas time).
My feet swelled some on the plane, but not bad. Since we have been back (a week and two days), the itching keeps trying to make a comeback and Wednesday it was driving me nuts, but is back to a minor annoyance that I can pretty much ignore.
Perhaps the answer:
So what causes the itching? I don't know for sure, but MAYBE I know the cause of MY latest episode. Cheryl had an epiphany that may have been the answer. That Friday, when it was real bad and Cheryl had me pull up my pants legs, she asked if I was wearing new jeans, I said, "yes" and she asked if I had washed them first. I said, "no." I had also worn them the day before as I brought just enough jeans to wear each pair two days on the trip. She said she bet that was it as I also had worn new dress slacks on the plane that had not been washed. But I said the itching had started last Sunday. She asked what I was wearing then. UH, another new pair of jeans I hadn't washed. She made me go change and put on an older pair and from that point on it started getting better. This past Wednesday after being back a week, it started again, and I had on the new pair of jeans I wore on the trip, but they HAD been washed, so I don't know. Maybe I have to wash them several times.I have worn new pants before without washing and it hasn't happened, but as my immune system weakens, who knows how or why it reacts the way it does. A friend of ours who deals in fabric says you always should wash new clothes before wearing because a lot of foreign fabric is very high in formaldehyde content. I Googled it and was amazed at what I found. Here is an extract from one site:
Frequent or prolonged exposure may cause hypersensitivity, leading to the development of allergic contact dermatitis. This may occur through skin contact with formaldehyde containing products or with clothing made from fabrics containing formaldehyde. Dermatitis caused by clothing tends to affect parts of the body where there is greatest friction between the skin and fabric, for example "trouser dermatitis" is usually apparent on the inner thighs, gluteal folds and backs of the knees.
Who knew? If Adam and Eve hadn't messed up, I wouldn't have to worry about this. So, my new self-diagnosis is "trouser dermatitis." Sounds pleasant, doesn't it? I bet the next time I am on a crowded plane I could get an empty seat next to me by just scratching and constantly muttering, "darn this trouser dermatitis, it just keeps spreading." Of course I better wait until we actually take off and get away from the airport.
I know this was a lot of detail, but I did manage to sneak our itinerary into the account. But, the main reason I wrote in detail is that I get reports of key word and phrase searches that bring folks to this site. An extraordinary number of those searches are about CLL and itching and rashes. So, I hope this might help someone looking for information.
I'll post a few photos from my trip in a few days. HEY, IT'S MY BLOG AND I CAN POST WHAT I WANT.... LOL
Sunday, January 28, 2007
I'm Still Here!
Sorry for the long silence again. So what has been happening? Last time I posted I had that pesky itching rash. It eventually cleared up, although it kept trying to come back, but the prescription cream worked really well. It has been several weeks now since it tried to reappear.
Since I last posted, several important dates passed. One was the first anniversary of this blog. When I started it, I posted every day and it was quite therapeutic. What's happening now? Not sure, but that is the subject of my next post which I have been formulating in my mind. December 23rd was Cheryl and my 39th wedding anniversary. For the first time in many years, we actually went out to a real restaurant that evening. Previous recent years have included, cereal at home, KFC take out, hamburger, nothing, and Luby's cafeteria. We really know how to celebrate! Actually, Cheryl is usually so frazzled trying to get ready for Christmas that she is too tired to go anywhere. This year, although we didn't even start shopping until that week (totally unheard of as the shopping usually starts in January and lasts all year), the afternoon of the 23rd we were totally ready and all gifts were wrapped. That has never happened before. It wasn't until that morning we were even sure if we were having our traditional Christmas Eve dinner with the family here as both girls' plans were up in the air. As it turned out, we even were having extra guests -- Cheri's in-laws. So I went to the store, bought a huge turkey and fixings for 13 people. Christmas Eve and Christmas day was a wonderful time of family and celebrating the birth of our Lord. Of course New Year's was the usual -- I watched on TV the ball in Times Square drop and Cheryl went to bed early. She even slept through all the fireworks in the neighborhood.
In December, our work put on our HIV conference in Austin. We had speakers from around the world and about 900 participants, I think. I was in charge of the AIDS memorial display of quilt panels. I ordered 22 of the 12'x12' panels and had them displayed in a giant circle in an empty ballroom. Each 12'x12' section has six 3'x6' individual panels made by loved ones of those who have died as a result of AIDS. Each one is totally unique and often very touching. We had panels from celebrities, men, women, boys, girls and infants. Very sobering. In the center of the room I had an oval table with two large round red bowls with floating candles and a large white pillar candle in the middle on a tall candle holder. A red ribbon was on the white pillar candle. In the center of the room were two couches and two easy chairs. It really was quite moving and a very nice memorial.
I was really late putting up the Christmas lights this year. They were only up for two weeks and I didn't have them all out either. I am the Clark Griswold of the neighborhood with all my lights and they normally go up on Thanksgiving weekend. This year was a little more "normal." They still looked nice.
So, what has been happening health wise? Glad you asked. My blood tests in the beginning of this month looked very good; my platelets even came back over 100 again, to 105. So I had another pass on chemo. However, since my lymph nodes are swelling again, including in my neck, my hematologist/oncologist ordered another CT Scan -- sigh. I'll be glowing in the dark before long. I won't know the results of that until I see him again on February 8th. Right after I saw him, I had an attack of what I assume was shingles without the actual skin outbreak -- yes that can happen. It was on my left arm and I couldn't wear my watch and even clothes hurt it. It was from my wrist to nearly my elbow on the underside. It would wake me up in the night hurting so badly. It also felt like electric shocks going through it quite often. Shingles are inflammation of the nerves. I was teaching a week long class that week here in Austin. Then, as that was clearing up I started catching a cold. At the same time we had a really bad ice storm that shut everything down for three days. I didn't go to the doctor because I was sure it was just a cold. I stayed home from work but still didn't go to the doctor as Cheryl was urging. Of course, by the time the weekend came, I was a lot worse. So, Monday morning I finally went to the doctor as Cheryl kept saying. Should have listened to her -- I hate it when she's right, ha! I had pneumonia in my right lung and bronchitis in my left. The doc prescribed a brand new broad spectrum antibiotic that is only once a day for seven days. By the second day on the meds, my fever went away and I have been feeling better, thank you Lord. I really was feeling pretty rotten for awhile. My cough is getting better every day. I went to church today and I will be going to work tomorrow. I haven't been in the office for three weeks now. Funny thing is, I have no desire to go in, either, and I do like my job. Oh well.
And that brings me to another decision that I haven't posted here yet. I am planning on retiring this coming September. I will be 62 in August and eligible for social security reduced rate. I had planned on working until 66 and collecting full social security at that time. However, since this pesky disease raised it's ugly head, I decided to retire now while I can enjoy it. I like teaching and training, but when I come home from being gone a week, I am just way too wiped out. Standing all that time also hurts my back, too. (Oh yea, I had another bone density scan and the osteoporosis is quite a bit worse too -- "severe danger" of spinal fracture and "increased danger" of hip fracture. So besides the Fosamax, I am also on calcium supplements. That brings me up to 14 pills a day, and I'm not even on chemo! -- whine, whine, whine, whine)
So, what will I be doing in retirement? If possible, I would like to work part time for a local HIV/AIDS project and do counseling and testing a couple of days a week -- what I am training folks to do now. Also, Cindy's young lady that watches my grandson Jonathan and feeds their dogs when Cindy is traveling will be going away to college. So, I will take over those duties. Also, when she and Corbin get their RV and boat storage business off the ground, I may take care of that for them initially until it starts to make enough money that Cindy can quit her job. I also want to do some fishing. I have taken the grandsons a couple of times this year, but I really would like to be able to do it more often. Cheryl is also looking forward to me being a full time househusband and taking care of the house. We share those duties now, so it won't be much of a transition. I don't think I will be getting bored at all. We worked out the finances and are pretty sure we can do it. Just to be sure, starting in February we are planning to live only on what we think I will be getting in September. We think it will "only" be a $12,000 dollar a year drop. Now when Cheryl retires in a couple of years, that is when the miracles will have to happen. We shall see.
Cindy had her surgery, and although the recovery was a little slow for her, she is fine now. Cheri is still dealing with some things. She did have another ultasound a couple of weeks ago and although the possible tumor didn't shrink, it didn't grow either. She is still having a great deal of difficulty sleeping as a result of some medications to the point she even went to a sleep clinic last week to spend the night. Although she was hooked up to all kinds of wires, she said she slept five hours, the best night's sleep she had in a long time. She asked if she could come back the next night -- ha!
Well off to bed as I need to look awake tomorrow at work.
Since I last posted, several important dates passed. One was the first anniversary of this blog. When I started it, I posted every day and it was quite therapeutic. What's happening now? Not sure, but that is the subject of my next post which I have been formulating in my mind. December 23rd was Cheryl and my 39th wedding anniversary. For the first time in many years, we actually went out to a real restaurant that evening. Previous recent years have included, cereal at home, KFC take out, hamburger, nothing, and Luby's cafeteria. We really know how to celebrate! Actually, Cheryl is usually so frazzled trying to get ready for Christmas that she is too tired to go anywhere. This year, although we didn't even start shopping until that week (totally unheard of as the shopping usually starts in January and lasts all year), the afternoon of the 23rd we were totally ready and all gifts were wrapped. That has never happened before. It wasn't until that morning we were even sure if we were having our traditional Christmas Eve dinner with the family here as both girls' plans were up in the air. As it turned out, we even were having extra guests -- Cheri's in-laws. So I went to the store, bought a huge turkey and fixings for 13 people. Christmas Eve and Christmas day was a wonderful time of family and celebrating the birth of our Lord. Of course New Year's was the usual -- I watched on TV the ball in Times Square drop and Cheryl went to bed early. She even slept through all the fireworks in the neighborhood.
In December, our work put on our HIV conference in Austin. We had speakers from around the world and about 900 participants, I think. I was in charge of the AIDS memorial display of quilt panels. I ordered 22 of the 12'x12' panels and had them displayed in a giant circle in an empty ballroom. Each 12'x12' section has six 3'x6' individual panels made by loved ones of those who have died as a result of AIDS. Each one is totally unique and often very touching. We had panels from celebrities, men, women, boys, girls and infants. Very sobering. In the center of the room I had an oval table with two large round red bowls with floating candles and a large white pillar candle in the middle on a tall candle holder. A red ribbon was on the white pillar candle. In the center of the room were two couches and two easy chairs. It really was quite moving and a very nice memorial.
I was really late putting up the Christmas lights this year. They were only up for two weeks and I didn't have them all out either. I am the Clark Griswold of the neighborhood with all my lights and they normally go up on Thanksgiving weekend. This year was a little more "normal." They still looked nice.
So, what has been happening health wise? Glad you asked. My blood tests in the beginning of this month looked very good; my platelets even came back over 100 again, to 105. So I had another pass on chemo. However, since my lymph nodes are swelling again, including in my neck, my hematologist/oncologist ordered another CT Scan -- sigh. I'll be glowing in the dark before long. I won't know the results of that until I see him again on February 8th. Right after I saw him, I had an attack of what I assume was shingles without the actual skin outbreak -- yes that can happen. It was on my left arm and I couldn't wear my watch and even clothes hurt it. It was from my wrist to nearly my elbow on the underside. It would wake me up in the night hurting so badly. It also felt like electric shocks going through it quite often. Shingles are inflammation of the nerves. I was teaching a week long class that week here in Austin. Then, as that was clearing up I started catching a cold. At the same time we had a really bad ice storm that shut everything down for three days. I didn't go to the doctor because I was sure it was just a cold. I stayed home from work but still didn't go to the doctor as Cheryl was urging. Of course, by the time the weekend came, I was a lot worse. So, Monday morning I finally went to the doctor as Cheryl kept saying. Should have listened to her -- I hate it when she's right, ha! I had pneumonia in my right lung and bronchitis in my left. The doc prescribed a brand new broad spectrum antibiotic that is only once a day for seven days. By the second day on the meds, my fever went away and I have been feeling better, thank you Lord. I really was feeling pretty rotten for awhile. My cough is getting better every day. I went to church today and I will be going to work tomorrow. I haven't been in the office for three weeks now. Funny thing is, I have no desire to go in, either, and I do like my job. Oh well.
And that brings me to another decision that I haven't posted here yet. I am planning on retiring this coming September. I will be 62 in August and eligible for social security reduced rate. I had planned on working until 66 and collecting full social security at that time. However, since this pesky disease raised it's ugly head, I decided to retire now while I can enjoy it. I like teaching and training, but when I come home from being gone a week, I am just way too wiped out. Standing all that time also hurts my back, too. (Oh yea, I had another bone density scan and the osteoporosis is quite a bit worse too -- "severe danger" of spinal fracture and "increased danger" of hip fracture. So besides the Fosamax, I am also on calcium supplements. That brings me up to 14 pills a day, and I'm not even on chemo! -- whine, whine, whine, whine)
So, what will I be doing in retirement? If possible, I would like to work part time for a local HIV/AIDS project and do counseling and testing a couple of days a week -- what I am training folks to do now. Also, Cindy's young lady that watches my grandson Jonathan and feeds their dogs when Cindy is traveling will be going away to college. So, I will take over those duties. Also, when she and Corbin get their RV and boat storage business off the ground, I may take care of that for them initially until it starts to make enough money that Cindy can quit her job. I also want to do some fishing. I have taken the grandsons a couple of times this year, but I really would like to be able to do it more often. Cheryl is also looking forward to me being a full time househusband and taking care of the house. We share those duties now, so it won't be much of a transition. I don't think I will be getting bored at all. We worked out the finances and are pretty sure we can do it. Just to be sure, starting in February we are planning to live only on what we think I will be getting in September. We think it will "only" be a $12,000 dollar a year drop. Now when Cheryl retires in a couple of years, that is when the miracles will have to happen. We shall see.
Cindy had her surgery, and although the recovery was a little slow for her, she is fine now. Cheri is still dealing with some things. She did have another ultasound a couple of weeks ago and although the possible tumor didn't shrink, it didn't grow either. She is still having a great deal of difficulty sleeping as a result of some medications to the point she even went to a sleep clinic last week to spend the night. Although she was hooked up to all kinds of wires, she said she slept five hours, the best night's sleep she had in a long time. She asked if she could come back the next night -- ha!
Well off to bed as I need to look awake tomorrow at work.
Tuesday, November 28, 2006
Yikes, Another Month Gone?
Hmm, I said I was going to do better about updating this blog. Well at least it hasn't been six weeks! So, what is my excuse this time? I really don't know. I have actually tried to analyze that myself. Perhaps I was just enjoying the break from treatment and lab work and doctor visits and such. Of course I was traveling also as I spent one of the past weeks in McAllen, Texas, teaching a class -- which went very well, by the way.
So, what has been happening? Well I got some great news yesterday -- NO MORE CHEMO at the very least until the beginning of next year, and perhaps even longer. I wasn't sure what to expect as my neck nodes are starting to return, although not as large as they were before, and I have been much more tired lately. I almost never get through an early evening without falling asleep in my chair a couple of times and most Saturdays consist of a couple of naps, even after nine to twelve hours sleep!
My blood work looked better than I was expecting and I think better than my doctor was expecting. My platelets did drop below 100 again, darn. But the rest didn't look too bad. I am only slightly anemic and I thought it would show more just based on how tired I am. Five areas were out of normal, but not too far. I won't go back for more blood work until January 2, and then will see the doctor the next week. Christmas without chemo is a very good thing!
I did have a strange rash that developed that had my doctor quite concerned. My legs started itching last Wednesday and got progressively worse. By Sunday afternoon, I had a rash up and down both legs, around my waist, on the back of my shoulders and it was starting down my arms. I would wake up in the night scratching and going nuts. I was taking Benadryl pills and putting Benadryl cream on it that helped some. Monday my ankles and feet were very red and splotchy. My oncology doctor wanted me to get into the dermatologist right away. He said if I couldn't get in to call him and he would make it happen. Well, I got in this morning. But, just like going to the dentist, it was MUCH better this morning. My feet and ankles were still red, but they never did itch. The rest of the rash was fading. The dermatologist wasn't sure what it was, but thought it was a skin infection. The redness on my feet wasn't actually a rash like I thought, but leaking capillaries under the skin. She said that was in reaction to the infection. She gave me a couple of prescriptions and is having me change my bath soap to an antibacterial gentle soap. I have a huge tub of prescription cream to stop the itching. It is always something.
Trivia fact from Wikipedia:
The total length of capillaries in an average adult human is approximately 42,000 km (25,000 miles), which if laid out in full would encircle the entire equator of planet Earth with some 1000 miles to spare. And you thought you wouldn't learn anything here today!
Both my daughters are having some medical problems too. Cindy will be having a surgical procedure later this week and Cheri is dealing with some things that could be a possible tumor. However, the doctor is taking an approach with medication to see if things get better. She won't have another ultrasound until January to see if whatever it is has shrunk. Rather worrisome for Mom and Dad. Her medication hasn't been allowing her to sleep well for the last couple of weeks and that is very frustrating for her.
Yesterday was the final day for all the repairs at the house -- hooray! And we even had a water softener installed last night. My dermatologist was pleased to hear that.
I hope your Thanksgiving was a blessed time with family and friends and that you took the time to reflect on all that you have to be thankful for. No matter what our circumstances, there is much for which we can give thanks. As the old hymn says, "Count your many blessings and see what God has done." I have to remind myself of that occasionally when I start to feel sorry for myself. We can get ourselves really bogged down in negativity if we let ourselves go. Nothing wrong with a little pity party once in a while, but that party can't go on for hours on end. The neighbors will start to complain if you let that happen!
So, what has been happening? Well I got some great news yesterday -- NO MORE CHEMO at the very least until the beginning of next year, and perhaps even longer. I wasn't sure what to expect as my neck nodes are starting to return, although not as large as they were before, and I have been much more tired lately. I almost never get through an early evening without falling asleep in my chair a couple of times and most Saturdays consist of a couple of naps, even after nine to twelve hours sleep!
My blood work looked better than I was expecting and I think better than my doctor was expecting. My platelets did drop below 100 again, darn. But the rest didn't look too bad. I am only slightly anemic and I thought it would show more just based on how tired I am. Five areas were out of normal, but not too far. I won't go back for more blood work until January 2, and then will see the doctor the next week. Christmas without chemo is a very good thing!
I did have a strange rash that developed that had my doctor quite concerned. My legs started itching last Wednesday and got progressively worse. By Sunday afternoon, I had a rash up and down both legs, around my waist, on the back of my shoulders and it was starting down my arms. I would wake up in the night scratching and going nuts. I was taking Benadryl pills and putting Benadryl cream on it that helped some. Monday my ankles and feet were very red and splotchy. My oncology doctor wanted me to get into the dermatologist right away. He said if I couldn't get in to call him and he would make it happen. Well, I got in this morning. But, just like going to the dentist, it was MUCH better this morning. My feet and ankles were still red, but they never did itch. The rest of the rash was fading. The dermatologist wasn't sure what it was, but thought it was a skin infection. The redness on my feet wasn't actually a rash like I thought, but leaking capillaries under the skin. She said that was in reaction to the infection. She gave me a couple of prescriptions and is having me change my bath soap to an antibacterial gentle soap. I have a huge tub of prescription cream to stop the itching. It is always something.
Trivia fact from Wikipedia:
The total length of capillaries in an average adult human is approximately 42,000 km (25,000 miles), which if laid out in full would encircle the entire equator of planet Earth with some 1000 miles to spare. And you thought you wouldn't learn anything here today!
Both my daughters are having some medical problems too. Cindy will be having a surgical procedure later this week and Cheri is dealing with some things that could be a possible tumor. However, the doctor is taking an approach with medication to see if things get better. She won't have another ultrasound until January to see if whatever it is has shrunk. Rather worrisome for Mom and Dad. Her medication hasn't been allowing her to sleep well for the last couple of weeks and that is very frustrating for her.
Yesterday was the final day for all the repairs at the house -- hooray! And we even had a water softener installed last night. My dermatologist was pleased to hear that.
I hope your Thanksgiving was a blessed time with family and friends and that you took the time to reflect on all that you have to be thankful for. No matter what our circumstances, there is much for which we can give thanks. As the old hymn says, "Count your many blessings and see what God has done." I have to remind myself of that occasionally when I start to feel sorry for myself. We can get ourselves really bogged down in negativity if we let ourselves go. Nothing wrong with a little pity party once in a while, but that party can't go on for hours on end. The neighbors will start to complain if you let that happen!
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