Sunday, February 26, 2006

Time for an update

I was reminded this morning in my SS class that I had not posted for over a week. A few reasons -- ok, excuses -- for that. First, things are going great (OK, you do need to know that too), second I have been out of town (hmm, I DID have my laptop with me), and third, I have been spending a LOT of time (too much?) on our great new patient and caregiver/family support site that I mentioned before, It has only been up and running for a few weeks and already there are 216 members, as of this morning. It serves a different purpose from some of the others and has become a true community of fun, learning, and mutual support. We are family related by blood, OK, a blood disease, but blood nevertheless. There is no way they can take the place of my actual family who supports me in more ways than I could possibly count, but there I am able to give encouragement to others who may be newly diagnosed or who may have no where else to go to vent their frustrations and ask questions about their concerns. The only thing that is missing there, is a section to discuss things of a spiritual nature and I am planning to write the site creators/administrators to see if we could add this. It is very apparent that we have several members with a stong faith-based outlook and I think we need a section where we could freely write about that.

My blood tests last Monday were what I expected. WBC shot up and platelets went WAY up to the normal range. That is the Prednisone at work. I will see what the true results are this coming Friday morning. I will then start my third round next week Monday. I am still doing very well with no nausea, hair still there - though if I tug on it, it comes out very easily. OK, I'll stop tugging.

I was out of town this past week training with Tammy, my team lead. She used to be my supervisor, but with reorganization she has a new title, but still serves the function like an immediate supervisor, although she no longer writes the performance reports. She is great. She took the primary lead as this is the first time I actually taught the course. I wrote the pilot course a few years ago, and it has changed very little, so I was comfortable with it. We had a great, small group of participants. Only nine, and because we do a lot of paired role playing, I did lots of role playing. Both as the counselor and as the client. It made me realize I much I miss direct client/patient interaction. Perhaps when I retire (getting closer all the time), I might look into doing it part time. I love helping others.

I did fall asleep in the back of the room several times when I wasn't up training. So Tammy and I decided I might better tell them what was going on with me physically rather than them thinking the old guy was bored and just sleeping. I didn't want them feeling sorry for me, so I was a little hesitant. When I did tell them, I emphasized how great I am doing with this and made sure there wasn't of the "poor me" junk involved. They were great about it. It really was a super group of folks who took the training very seriously and it made for a very pleasant week. I did go back to the room each night and crashed/slept for a few hours before eating or watching TV. It was good to feel productive. When ever I actually taught a module, I felt energized. Thanks, Tammy, for being a great support!

I will be going to San Angelo this coming week for a couple of days. I will leave on Tuesday and come back Thursday night. This is a follow-up to last weeks training. We go out and observe the participants actually putting into practice with actual clients what we taught them. We then give them suggestions on how they might improve. I only have two participants from San Angelo, so that works out great and I will be back for my appointment Friday morning.

I will let you know the results of the blood work here at the end of the week. As always, thanks for your prayers and support. Prayers are very obviously working.

Friday, February 17, 2006

Honored and an Update

I have told you in the past that there have been many people who inspired me this past year since diagnosis. However, today I want to tell you about another connection that began before my diagnosis. A lady I work with, Jean, told us in 2004, about her cousin, Ed Schexnayder, who was battling Acute Lymphocytic Leukemia (ALL) and Non-Hodgkins Lymphoma. He was diagnosed in January 2004 and was only 29. I had just lost my Dad the previous November to Leukemia, so I was keenly interested. She forwarded emails that Ed wrote to family and friends as he fought his battle and the many ups and downs in his journey. He underwent some difficult chemo treatments in the Spring of 2004, and things were looking pretty good. His attitude was inspiring! It was discovered that his sister, Julie, was a match for a bone marrow transplant and that possibility was being explored. During all of this, he continued working on his MBA, receiving all A's and B's! (He was eventually awarded his MBA!) He was surrounded by loving family and I know that motivated and inspired him. As they moved into the fall, he was preparing for the transplant with lots more chemo and full body irradiation scheduled. His sister was a brave lady too, because the bone marrow donation is not pleasant as they have to drill many holes into the bone to get enough of the good stuff. In October, it looked like he was struck with Bell's Palsy- paralysis in his face. When they got to MD Anderson, in Houston, to begin the procedures leading up to the transplant, it was discovered the Leukemia had returned. It changed all the plans and delayed them to December. They had to knock the Leukemia back down and now could only do a stem cell transplant from Julie (an easier procedure for her, I believe). It turned out that the Bell's Palsy was because the disease had now gotten into his Central Nervous System. He was also plagued with soars in his mouth, throat, and all the way into his stomach. However, from the emails I read, he never lost hope. He was not a whiner! I was amazed at his bravery and his positive attitude. His family continued to rally around him.

Around Christmas, I think, he did have the transplant. It was successful and he was 100% donor cells. However, near the end of April, 2005, Ed lost his battle. His lungs were severely damaged from the total body irradiation and they could no longer support his body any longer. Basically he died of acute respiratory distress syndrome. He left behind a loving wife, Maydel, and twin children, Alan and Madelin, who were only two years and two months old! The one thing I want to point out is that he never, ever gave up. I pray for his wife and the kids. Ed died only a few weeks after my diagnosis, but I think God led me to his story before that to show me how someone can bravely and confidently face difficulties. I don't know why God allows these things to happen and it can be frustrating for us. We just to have confidence that He has a greater plan and we have to trust in His purpose. Ed's short life touched mine in a profound way.

Now, his oldest sister, Leah, is honoring Ed's memory and is participating in an upcoming half marathon for the Leukemia and Lymphoma Society's Team in Training. She is raising money for research for all blood cancers. As she said, she felt so helpless at the time Ed fought his 14 month battle, but now she wants to be able to do something to help others. In her own words from her fundraising site:

Although Ed lost his battle with ALL, there are so many others that are still fighting cancer and by participating in the TNT program I can actually DO something to help. More than 670,000 Americans have leukemia, Hodgkin or non-Hodgkin lymphoma or myeloma. Every five minutes, someone new is diagnosed with blood cancer. Every nine minutes, someone dies....

When Jean told us Leah was doing this, I went to her site and made a small donation and wrote to her and told her briefly how Ed had touched my life. I was amazed, honored and touched that she added me to the list of those she was running for. Her site is listed at:

Now a brief update on me. Today is the last day of the Prednisone part of this week's treatment, so perhaps I will be able to crash about noon tomorrow and get some sleep. I have not been nearly as hyper and wired as the last round and in fact, have felt a little draggy (such a word?) the last two days. I have come to work each day, but am only sleeping from between and hour and a half to three hours each night. But that is OK, because NO NAUSEA! Yea! The anti-nausea pills are working. Also, my hair stopped falling out again - ha! I know you were worried about that. If the doctor allows it on Monday, I will be heading out of town to conduct a training with a co-trainer. If not, my supervisor's have a back-up available.

I will post again if I have something significant to say :)

Wednesday, February 15, 2006

Round Two of Chemo

Sorry I am a little late in posting this update but I have been spending a lot of time (too much time) on a great new site for CLL survivors and caregivers, This site was started by a group of folks who are also on the ACOR site. This new site just serves a broader purpose and does not replace ACOR. This one is like a little community (growing fast) of friends to have FUN and share. Lots of different areas to post, even a fun game area.

Anyway, yesterday's chemo went fantastically well. When we got there they accessed my port (breast implant) and drew blood for testing. Then we waited for those results and then saw Dr. Netaji. He was so very pleased with the results. He asked me what I would hope my white count would be. I told him I would be happy with about 15,000 as they were 48,000 last time. He said they were 9,000! NORMAL RANGE! My lymphocytes had come down some, but were still at 80 percent. (I don't have the exact figures in front of me) and my platelets had dropped into the 70's. The steroids this week will bring the platelets and white count up temporarily. He was so pleased with the results of my "whimpy" choice of treatment (his words, remember he wanted the big guns drawn first), that he thinks maybe we will only do two more rounds after this instead of the planned four more. It was hard for me not to say, "I told you so." I wonder what my results would have been with my first choice of treatment? Oh well, I am pleased and I won't second guess that. Then he thinks we might do Rituxan maintenance every few months. I can handle that!

After talking with him, we moved to the infusion room to get comfy. I started off with two Tylenol and a bag of anti-nausea drugs, followed by a bag of Benadryl. After I was sufficiently loopy from the Benadryl, started the Rituxan (my little mouse parts). They started real slow because of the "shake and bake" reaction I had last time. At some point they added some steroids too, but I missed that while I was in la-la land. The Rituxan took several hours. When that was done, they added the Cytoxan, my chaser for the mouse coursing through my veins. (Getting harder and harder to pass up trash cans now and I really think I am beginning to get cravings for cheese :-o) We finished up about 3:30 or so and I had NO reactions of any kind. I even managed to watch a movie, "Hitch" on my new portable DVD player. Of course Cheryl drove home because I was still 'under the influence.' For supper, I added an insulin shot as my sugars were already off from the treatments, two Tylenol, two Benadryl, my four friendly Prednisone pills and the strong anti-nausea drug. This on top of the 8 other pills I normally take every day. They all did their job and had me surfing the web and joining my new cllforum most of the night. I did finally try to go to bed about 3 a.m. and napped on and off some. Cheryl commented that I was still staggering some last night. But officer, I only had just a few legal drugs in me. It must be that sneaky inner mouse.

Today was another good, wide-awake, slightly hyper day. Started my income taxes, but surfed the web and tried to fix my home network (didn't fix it). Still no reactions, and now none expected. Got the full 80 mg of Prednisone today and am now wide-awake typing away. Even two Benadryl tablets aren't winning the battle with Prednisone. I will be taking the Prednisone pills for five days, the strong anti-nausea drug regularly for four days, and then only when feeling nauseas. I am still planning to go to work tomorrow, so hopefully I will start to get slightly sleepy soon as I get up at 5:20 in the morning.

By the way, after that one day of hair coming out in little clumps a couple of weeks ago, it stopped -- until today. I think it is starting again. My sink was littered after only running my hands through it. They did say it would take about a month or so to start to lose it and it has been three and a half weeks, I think, since first treatment.

I go to see Dr. Netaji next Monday morning. Then, hopefully with his blessing, I will be heading out of town to Tyler, Texas, to help train our new course. If I can't make it, my work has a backup plan. There will be two of us training and they are having me drive my own car too so if I have to go back to the hotel early to lie down I can. I am so blessed to be working with the people I work with. They are a great bunch, sometimes a few are a little strange, but great. And hey, I like strange. I fit right in!

Well, now a little after 2 a.m. Central Standard time, so guess I will go lie on the couch and watch infomercials. Sometimes when I can't sleep in a hotel I put them on at low volume and I drift off to sleep. Hmm, maybe some CHEESE and crackers before I lie down. I could still get three hours of sleep. My feet are still doing a happy dance and God is in control!

Monday, February 13, 2006

Apology - Update - Thanks - Remembrance

I guess I need to apologize to extended family and friends. Since I have not posted since January 30th, folks are beginning to think something is wrong. I have gotten several emails and even phone calls checking on me – thanks! But I want to assure everyone I am doing great. I just didn't feel there was any real news to add and perhaps I was just a little lazy too.

I haven’t had any real nausea for the last two weeks. I started to slightly feel it a couple of times this past week, but took an anti-nausea pill and it went away. I have had slight trouble on the other end, if you know what I mean, but not bad. I have been more tired beginning last Wednesday, with a couple of embarrassing moments. I go into work at 7 a.m. and on Wednesday I was asleep in my chair when my team lead came in a little after 8. I think she was amused. Then Thursday, I fell asleep in front of my computer at work. I figure I was asleep for about an hour with the mouse in my hand. Since we moved last summer, we now work in cubicles instead of offices, so several people noticed but did not bother waking me. One of my co-workers offered me a neck pillow for the next time I fell asleep…sigh. I am thankful that they are all a great group and more than understanding of my situation. The last several nights at home I have fallen asleep on the couch, very early. Cheryl and my Mom just go to bed when it is time and they leave me sleeping peacefully. I usually wake up about one or two a.m. and then move to the bed. I guess this is to be expected as my blood counts drop. I still feel real good when I am awake!

I start round two of chemo tomorrow. This time will be different as tomorrow I will get both drugs instead of spreading it out over two days. I am not sure how long it is supposed to take. I will have blood work first and then see Dr. Netaji before beginning the infusions. The technician wasn’t sure if I start the Prednisone tomorrow, so he told me to bring the pills with me and the doctor will let me know if I need to take them before we begin. Cheryl will be with me too.

I got a very special present on Friday. Last post I told you I had ordered some blue wrist bands from David E. On Friday the package arrived. David and his wife, Mary, sent WAY more than I ordered, but also included a hat from his golf tournament last year that has the “Faith, Love, Hope, Win” logo on it; a yellow bandana from Lance Armstrong (one he sent to David when David wrote to him – they can’t be purchased!); a special prayer card; a book of inspirational writings titled, “Hope” that they inscribed to me; and a very nice card with a wonderful personal message. The bandana has the Lance Armstrong Foundation logo, LIVESTRONG, on it with the motto, “Knowledge is Power. Unity is Strength. Attitude is Everything.” repeatedly written around it three times in ever increasing type size. I guess you would just have to see it, but it is special. I had to go to Ft. Hood on Friday to get medications refilled and medications for next week. When I got back that night, I went to the computer and used David’s address to find his phone number. I was planning to surprise him with a phone call when we got back from my grandson’s basketball game on Saturday morning. Well, David surprised me and called me just before we left to go to the game! (He was also getting ready to go to his son’s basketball game.) He and his wife were worried because I had not posted here and they wanted to know how I was doing. I told you he was a special person, and now I know his wife is too! Of course I should have known that because David had bragged on Mary several times on his blog. It amazes me the connections I have made with so many people who were strangers to me less than a year ago. However, I have felt a special connection, which I can’t fully explain, with David E.

I have also corresponded with many members over on ACOR and we have encouraged each other. We also lost two long time members this past week. One, David Covell, was a true inspiration to the entire list and me personally. David was diagnosed with CLL in 1997, at the age of 43. The outpouring of grief, memorials, and messages of sympathy to his wife were amazing. David Covell was so honest in his posts of his struggles and then told us of the time last year that he had accepted the fact that there would be no more treatments. He was at peace with that. He told us of his decisions and kept us informed on when he would decide to go on hospice care. He finally decided it was time to accept hospice care on January 1st of this year. He was one of the bravest people and had an upbeat attitude to the end. He was a musician and photographer. On July 30, 2005, he had a very special experience and I am going to use part of his post to explain it:

“I'm posting this from a motel room in Carlsbad, NM. Tomorrow morning at opening time, i.e. 8:30AM, I will get to fulfill a dream I've had for 30+ years, to play guitar in Carlsbad Cavern. I obtained special permission from the park service this afternoon and they're actually going to let me do it. …I didn't even have to play the terminal-cancer card, although I would have if necessary. What the hey, this is almost certainly my last chance to do this, and I am definitely dying, so why not?”

Then, after playing, he wrote this:

“I took a lot of photos inside Carlsbad, and also recorded two songs 750 feet underground in the most scenic place I've ever played. I came home all excited about sharing with the list…”

“I have played in caves before, but none had the sheer size and astonishing beauty of Carlsbad. I obtained special permission from the park service to take my guitar and a portable digital recorder into the cave. I was the first one into the cave that morning, and was able to avoid the crowds of people who came later in the day. I made a beeline to a remote place in the cave, and I had it all to myself for 45 minutes. The recorder was carried in a waist pack, leaving my hands free to play as I walked through the cave. I choose a particularly impressive spot to sit and play, and to record two songs. It was quite inspiring. Since its 56 degrees and 100% humidity in the cave, my fingers were cold and clammy and it was somewhat hard to play. The recording has some mistakes, but hopefully it communicates the mood and feeling that comes from being 750 feet underground, alone, and looking at formations which have taken millions of years to reach their current size. Truly an awesome experience, which I feel blessed to have been allowed to do.”

David Covell suffered through over 100 doses of chemo, radiation treatments, a bone marrow transplant, three clinical trials, at least three relapses, multiple episodes of shingles and other nasty things. Yet he knew how to live and see the beauty around him. He also knew how to die with dignity and bravery. He died a week ago today. He will be missed. I pray for his widow, Rena.

Well, I must get to bed to get ready for tomorrow. I WILL post by Tuesday night to let you know how it went. Again, thanks for your prayers. They are effective!