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

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.

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!