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

Three Months? Nope, I'll Take TWO Years! -- and still counting!

July 2006, after 8 rounds of chemotherapy, my doctor said my body needed a break and we were going to stop the chemo for a while. I hadn't achieved remission, but, after a great initial response, the later infusions were making little positive difference. My doctor said we would wait three months and perhaps we could squeeze six months out of it before starting chemo again and he was pushing for stronger stuff.

I had already resisted the initial treatment he wanted and what the specialists at MD Anderson had suggested -- FCR -- Fludara (fludarabine), Cytoxan (cyclophosphamide) and Rituxan (rituximab). I wrote about this at the time, but my main concern was the increased risk of infection because the fludarabine wipes out the T cells to a very low level, just like someone with a full AIDS diagnosis. And, it can take a couple of years for the T cells to recover. After lots of research and a compromise with my doctor which I also wrote about at the time (January 11, 2006 entry), I went with Cytoxan, Rituxan and Prednisone. The protocol usually includes Vincristine, but it often causes neuropathy and since I am diabetic and have a little neuropathy already, we left that out as he was afraid of permanent damage. My doc called it a wimpy treatment but said he would honor my wishes but when it failed he wanted to go with FCR. After eight rounds I was beginning to doubt my decision, especially after a bone marrow biopsy showed I still had 50% cancer cells in my marrow (it was 90% infiltrated 7 months before chemo began).

Well, fast forward two years and I still have not had any more chemo and I am more than pleased with the results I got. No, I didn't achieve remission, but I got a great partial response and, what I call, a wonderful intermission! There are folks whose actual remission didn't last two years. I know I am moving closer to treatment again, but I think it is great. Of course I have to rub it in a little with my doctor and he admits he is very surprised. What do I attribute it to? I firmly believe it is all the prayers of others on my behalf. The Great Physician's timetable is very different from my earthly physician's.

I have been getting IVIg infusions every two months now and that is keeping infections away so the all day inconvenience and the horrible cost to my insurance is worth it. Last year, before starting IVIg infusions, I had nine infections, including pneumonia twice, this year only one slight cold and a very strange incident a week and half ago while on vacation in NY. I will write about that in a day or two. I think the IVIg is also helping to keep my platelets up around 100, so that is an added bonus.

I go down to MD Anderson for a follow up appointment at the end of August. Even though my neck nodes are giving me more and more discomfort as they continue to grow, I think I will get another pass on a treatment recommendation. We'll see.

What Joy

BIRTH

A little word meaning the beginning of life, but packed with so much more meaning than that. A couple of days ago, I wrote about death, the end of life, so I wanted to talk about a more pleasant subject on the opposite end of the spectrum.

On June 2nd, my newest grandson was born. Gavin Elliott was a couple of weeks early, but weighed in at 10 pounds 3 ounces and was 22 inches long. What joy a baby brings. The innocence, the promise of great things, a new beginning, just that soft skin and "baby smell" (no, I'm not talking diapers here!). It is even more joy for grandparents because there are no 3 a.m. feedings! He pretty much is skipping those now, anyway.

I don't think I am prejudice, but he is the cutest thing I have seen since my other grand kids were born many years ago - they are now 13, 13, and 10. And his Mom, Grandma and big brother agree with me.

A new birth can help take the sting away from death that sometimes surrounds us. This was clearly illustrated to me 35 years ago. My grandmother died the night before my youngest daughter was born. I was close to "Nanny" (or "Nan" as I called her as I got older) because we lived right next door to her until I was in the third grade. Then we moved less than 20 miles away so I saw her at least every week. As a teen with a driver's license, I would go to see her - a great excuse to drive the car, too. But then I went into the Air Force and was either mostly in Germany or Texas so we were a long way away and I only saw her about once a year or so, but we kept in touch through mail and phone. It hurt that I would not be able to go to her services, but the next day when Cindy was born, the hurt eased.

With all the passing of folks on my patient support site, we have also had what I perceive as an increase in posting of pictures of children and grandchildren, including many new babies, on the cllcfriends site. It helps to balance the hurt and pain and suffering of members. Precious new lives.

Cindy had a very rough time with this pregnancy. She had "morning sickness" throughout the entire pregnancy and not just in the morning. She is the one who previously had two heart surgeries and her heart started messing with her again about half way through. She went into premature labor about two or three months early, but they were able to stop it. The last two weeks before delivery, she had constant contractions that kept going between two minutes and five minutes apart with very little down time. She was hospitalized several times during the pregnancy and had to go to labor and delivery several times in the last couple of weeks only to be sent back home after a couple of hours. The last night she spent the night with us and at 6:30 a.m. I drove her to the hospital after her water broke. They couldn't send her home then. Corbin, her husband, is a driller in the oil fields and he was well over six hours away. He had to drive back from West Texas pulling his huge mobile home trailer behind him. The nurses didn't think he would make it in time, but he arrived a little less than an hour before Gavin was born. Good thing or I might have slapped him around! :)

All those troubles were forgotten once the precious gift from God arrived.
Gavin is advancing at a remarkable rate. At two weeks old he began turning over front to back. He smiles regularly now and it is not just when he has gas, because it is in response to stimuli. He is cutting two bottom teeth. He is only six weeks old, but I think he is starting kindergarten next week.
Karen, a lady who's blog I follow and who is listed over to the right as The Adventures of Cancer Girl, calls her little girl WCK (world's cutest kid). Sorry, Karen, but Gavin has stolen that title.

(By the way, if you have never been to Karen's site, it is well worth the read. She has one of the greatest senses of humor and the most wonderful writing style. When I am feeling down, I always get a smile reading her blog. To give you an idea, a recent entry title is, "Moose drool, wolf pups, bear poop." But if you go there, don't read just that one. One other note before I wrap this up. David E., the fellow with advanced prostate cancer whom I have referenced several times, is now undergoing chemotherapy as his other treatments stopped working. Please keep David and his family in your prayers.)

Well, what kind of grandfather would I be without pictures? Most of these were taken and sent via phone so they aren't the sharpest quality, but you can see how cute he is. So, enjoy!

A couple of hours old:

One day old:

Let me think about it, yep, I'm cute!

I'm in charge and don't forget it:

Brotherly love! Jonathan and Gavin sleeping. (Jonathan is almost 14)

Mother and son bonding:

Taken today

In Our Hearts Forever

Death
A little word meaning the end of life, but packed with so much more meaning than that. Around that word is packed so much heartache and suffering and, paradoxically, many times celebration.

This year death came to many people I care about and has drastically effected the lives of many others I also care about. With the danger of leaving someone out, I would like to mention a few.

Wanda Daniel was a true friend to our family. For over 40 years she ran a day care center at our former church in San Angelo, Texas. The former pastor of the church, Earl Dunn (another great man of God) had a vision and saw the need for a day care center in that part of town and he went to Wanda to ask her to be the first director. Her daughter, LeeAnn, was one of the first enrolled and graduated from the very first kindergarten class. LeeAnn later became a teacher and then assistant director working beside her mom. Technically she was there forty years too, if you count coming in after school!

Forty years is a long time, but the number of people impacted by Wanda's golden heart is immeasurable. My two girls were enrolled there. The same week my youngest was born, my wife's father - who was dying from cancer - and her youngest brother came to live with us. Our little family went from three to six in one week. By the time Cindy was a month old, it became painfully apparent that Cheryl could no longer be a stay at home mom. I was a young man in the Air Force and that was back in the day before major pay raises brought us even close to the poverty level. San Angelo was a military town and Wanda knew our plight. She didn't charge us initially! Then, when we insisted, she put us on a reduced rate. Finally some time later, after much arguing we got her to agree to the full price. My grandchildren also attended her daycare and when the girls both became single moms and enrolled in college, Wanda put them on a reduced rate too! She did not see it as a job, but as a mission opportunity. The daycare was not a profit making machine! If there was an opening, and the waiting list was always very long, Wanda would not turn you away. The state brought many people into the facility to show prospective new owners the proper way to run a daycare. Although it was licensed by the state, Wanda always resisted accepting government funds of any kind along with all the strings attached.

Unfortunately, as often happens even among Christians who are not acting very Christian-like, a group within the church decided the daycare needed to become profit making to help support the church which was dwindling in member and funds. Wanda strongly resisted as she knew it was a long-running mission and she felt God still had a need for that type of mission work there. Unfortunately that group, with the support of the new pastor, prevailed and Wanda and LeeAnn were fired late last year! Wanda's golden heart was shattered, literally. Her heart was hurting, but she thought it was emotional pain and did not go to the doctor. In February she finally went to the doctor and major damage was discovered. Over the course of several months she had numerous surgeries from which she never fully recovered. Finally she was placed on hospice and then the Lord called her home on June 14, 2008. That golden heart has now been pieced back together and made whole, but she left her friends' and family's hearts hurting.

Ken England, 99, was a wonderful man who attended my Sunday School class with his son Joe and daughter-in-law, Claretta. He died May 22. He served as pastor, associate pastor or interim pastor to churches in Pond Springs, San Gabriel, Jonestown and Round Rock. He also was associational missionary for Atascosa Association and preached revivals throughout Texas, Louisiana and Mississippi. Our church recently named Ken pastor emeritus of First Baptist Church, Round Rock. Ken was a published author and had also written a book of poetry which he honored me by giving me a copy. He lived a full life and was very active until just very recently. His service was a true celebration.

Another man in my class, Cliff Hobbs, just lost his son, David, to a sudden and unexpected heart attack just a couple of weeks ago. He was only 48.

P.C. Vencat and his wife, Chaya, established a website for CLL/SLL patients which evolved into THE most valuable resource out there for those of us struggling with this leukemia and/or lymphoma. Chaya did most of the writing, but P.C. was the patient, webmaster, editor and publisher of the site. I have a link over to the right (http://www.clltopics.org/) and I have referred many, many newly diagnosed folks there. It was one of the first places I found when I was diagnosed and Chaya is able to take a very complicated subject and make it understandable. The section for the newly diagnosed is a life saver. These folks knew the disease. After much study and research P.C. took a chance on the only thing that offers a possible cure and that is a stem cell transplant. Everything was right. He was strong and relatively healthy, they chose the experts to perform the procedure and they had lots of emotional support behind them. Even with all of that, P.C. passed away on June 23rd from complications after an allogenic cord blood stem cell transplant. You can read the details of his transplant journey at Harvey's Journal. Harvey was the "fictionalized" character Chaya wrote about, but Harvey was really P.C. Hundreds and hundreds of lives have been enriched because of this couple.

One of the strongest caretakers I know, out of many strong caretakers, lost her husband to CLL a short time ago. Cindy Stanley's husband Tony, age 52, lost his long running battle on April 28, 2008. He endured so many different treatments, trials (and torture) trying to keep this dragon at bay. He fought a valiant battle and was a true CLL warrior. Cindy was with him every step of the way and kept us informed via http://www.cllcfriends.com/ and http://www.cllforum.com/. She posted less than an hour after he died to tell us. One of the last posts before that included this heartbreaking sentence: The nurse just informed me that they have called all the hospitals in the area and no platelets at any of them. Tony's platelet count at that time was 6 (the normal minimum is 150) and he was bleeding. I don't know if they ever found any at that time, but it does remind me to remind all of you, if you are able, please donate blood and/or platelets whenever you can. You can literally save a life.

Some others who have died from CLL in 2008 with whom I had a connection:

AndyLynn, age 30 and she left behind a husband and a toddler

Cathy's husband, Philip

Val Bollock's husband John who had not been diagnosed very long at all and he left a young son, Will.

Shirley Smythe, from Ireland lost her Mom

Elizabeth's Dad

Lise Rasmussen-Wright who was a long-time battler of this disease and a friend to many.

Bonnie, who has CLL, lost her son, Jordan McKay Washburn, May 10th to a rare blood disease, metastatic alveolar rhabdomyosarcoma, which mimics acute leukemia. It is considered a pediatric cancer but he became ill late last year. He had just turned 26.

Each of these folks was loved. Each made a difference. Each one will be missed. Each will be remembered.

HELLO! ANYBODY HOME????

Come out, come out, wherever you are!

What happened to spring?Let me get cleaned up and then we can visit.Sorry, I really didn't mean to abandon my blog.

Sometimes you just need a break from this cancer thing and sometimes that break just goes on and on. Actually, I have multiple reasons for not posting for so long. Probably the main reason was that for much of the first part of the time I was gone I was not in a very good mood and I didn't want to come here and just whine. I was a real bear! I couldn't figure out why I felt that way, but I was angry a lot and not real pleasant to be around and I did not like it. Finally, after prayer and thinking about it for awhile, it dawned on me that the testosterone replacement is really a steroid and steroids and I don't play well together. So, on my own, I stopped taking my daily dose. After a few weeks I was feeling pretty much back to normal. Then I told Cheryl what I had done. She said she wondered what happened because she noticed a definite difference in my mood and attitude. When I told my doctor what I did, he said, "yep, that will do it." So, I would rather be more tired than more angry. I think it is a good trade.

At some point I signed on to one of my patient support sites for the first time in weeks and the first thing I read was a post by a young lady from Ireland whose mother just died from CLL. I closed out without even sending condolences which is not like me.

About the time I was going to get back to joining my on line friends and reading blogs, etc., my computer died. In fact, within about a week, my cell phone died, my printer died, my laptop died and my desktop finally about totally gave up the bits and bites. I'm just glad I don't have a pacemaker. First I got a new phone, then a new multifunction printer, then finally got my laptop repaired for a couple of hundred dollars and a wait for a part to come in. My desktop computer is still taking up space. But it gives Cheryl something to get on me about. Ha! Sorry, dear!

It's funny, but I really was feeling quite guilty for not posting and yet I still kept putting it off. I would sign on to write, and end up playing Bejeweled 2 Deluxe! I am addicted to it. But all of this reminded me of my procrastination days in school. I always put off assignments until the last minute. I thought I would join procrastinators anonymous, but I just haven't gotten around to it yet.

Slowly I have been getting back and trying to catch up. Unfortunately, while I was away, some fine folks lost their battle to this stinking disease. I will write about them in a day or two. I also lost friends to non-cancer reasons. Actually I have lots of news I want to write about but not now.

In health news, my disease is remaining stable. It is only progressing slowly and this month the blood work actually looked better than last month! My platelets have been over 100 for several months now. All I am doing is IVIg infusions and I am now able to do them only every other month -- YEA! They really aren't bad, but they do take six to seven hours and a lovely little bottle of STEROIDS come with them. So that night I stay up and then sometimes have breakfast with Cheryl before she goes to work. They also give me headaches for about two weeks, but I think that part is even getting better. The important part is, it works! Last year I had nine infections in ten months, including pneumonia twice. Since starting this last November, I have had one slight cold and that is all.

Thanks for checking in with me.