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.

One Year Anniversary Since Chemo Therapy

I guess I could toast my anniversary, but I don't drink and besides, that is rather a strange anniversary, but certainly one worth celebrating.

I went to the oncologist Monday but I have been waiting to post because I thought I would have some other blood test results back. However, they aren’t back yet so I will post this as I had promised a couple of folks I would get a post here by today. My blood tests this time were decidedly mixed results. He didn’t test the IGg level this time, so I don’t know what that is. My white blood count and my red blood count were both in the normal range for the first time since my last round of chemo, one year ago today! I am not anemic.

However, my absolute lymphocyte count continues to slowly climb in the area above the normal range (lymphocytosis), my platelets continue to decline (thrombocytopenia) and dropped to 90 (90,000/mm3) and my lymph nodes continue to slowly increase everywhere (lymphadenopathy). So, this technically puts me into Rai Stage IV of the four stages of the disease or stage C of the Binet system that has stages A, B, C. But this only sounds worse than it is. As they say, “Been there done that.”

“Rai: Stage IV CLL is characterized by absolute lymphocytosis and thrombocytopenia (<100,000/mm3)>

Binet: Clinical stage C CLL is characterized by anemia and/or thrombocytopenia regardless of the number of areas of lymphoid enlargement (Rai stages III and IV).”

Again, they don’t treat numbers, only symptoms. My disease primarily presents as the lymphoma portion so my blood tests don’t usually look too bad. Even before treatment, my white count and lymphocyte count never did get too terribly high. To show you that my doctor isn’t all that concerned, he is skipping my August appointment and I don’t go back until September. If my platelet count gets to about 50 he will order another bone marrow biopsy to see what is going on in there.

I did start the testosterone replacement therapy. I am using the gel that I rub into my skin once a day. However, I am starting at a very low dose. At the end of the first week I thought I saw a very big difference because I actually had energy over the weekend even though it had been a week I was out of town. I was thrilled! But, it didn’t last long. Cheryl thinks my energy level is better than it had been and I guess it is, but I don’t feel as energetic as I did that first weekend. I still nap in the evening and during the day on weekends. Someone asked about sleep apnea, but I don’t see any signs of that. I sleep wonderfully during the night, rarely snore, and rarely wake up at all until morning. I don’t even turn over very much and the covers are rarely disturbed very much.

Normal free testosterone level is 50 – 250 pg/ml and mine was 21. I am on a very, very low dose of the gel, in fact only one quarter of the dosage listed on the package. My doctor didn't want to increase it yet until they checked my level now. That is the test that isn’t back. The therapy can raise blood sugar (I have noticed that a little) and there is some indication that it can have negative effects in the area of prostate cancer. There is controversy that it actually causes it, but there is little doubt that if you have prostate cancer the therapy will accelerate the disease. Of course having CLL/SLL puts you at risk for other cancers anyway, so it is walking a tight rope.

I now have another ear infection. All last month my right ear would start to ache and then just as I was about to decide to go to the doctor, it would stop. This happened three or four times. Monday afternoon, after my oncology appointment it really started to hurt and it hadn’t done so in over a week. So I made an appointment with my primary care doctor. I now have some antibiotic drops to use for ten days. Umm, yes, I know my oncology doctor said I would do the IGg infusions if I had another infection. I guess I will let him know in September. HA!

Only two more full weeks at work! Technically I don’t retire until August 31st, but I only have to work one day in August as I still have enough annual leave left to take off the whole month. When I was first diagnosed, I was so fortunate that I had so much leave in the bank. I had rarely missed a day ill in the years I worked for the state, so I had over 700 hours of sick time saved up. I also always kept the maximum number of carry over annual leave days saved. I did this just because of my age I thought if I ever had a heart attack or some other major illness, I would need the time. I am thankful I did this. Even with all of the doctor’s appointments, chemo treatments and going home early because of not feeling well, it wasn’t until this February that I exhausted all my sick leave (I still get 8 hours each month). However, I have 196 hours of vacation time still left. Hurray. I only have one more class to teach and that is next week. I will be in Fort Worth and it is a course I wrote. This will be very strange because I have been teaching since 1971 when they made me an instructor in the Air Force. I am looking forward to it.

On another note, please keep David E. and his wife Mary in your prayers. He is my “cyber friend” that I have often written about. His advanced prostate cancer, which had spread to his bones, is on the march again and it looks like he may be facing chemo treatments now. He has been trying to avoid that as long as possible by using other treatments that have helped but now have seemingly stopped working, or at least not working as well. He will have to make a decision at his next appointment in August. Starting chemo is a scary time for anyone!

As always, I appreciate your prayers, your concern, your comments here and the many I receive by email. Knowing people care is more important than I ever realized before. Thank you.

Dr. Appointment & Some Silliness

Well, I waited to post the results of this month’s doctor visit until I had all the reports back. Actually it is all pretty good news. There was hardly any change at all in the regular blood tests. Platelet level slipped a little to 103, but surprisingly, the red cell count came up right next to normal. I am not considered anemic. Both Cheryl and I thought for sure that had plunged, just because of how extraordinarily tired I have been. My IGG actually went up a little, although it is still low. My onc decided to hold off again on IVIG because I have not had an infection and he is having a little trouble getting it. (That is the $10,000 a month treatment.) What I really wanted to know was the cause of my fatigue. As most of you know, I have been struggling with that since almost the beginning, but it has been getting worse again. He asked us a bunch of questions. My wife told him I will sometimes fall asleep in the middle of a conversation. I didn’t know I did thzzzzzzzzzzzzzzzzzzzz

Oh, sorry, anyway, he said it could just be the underlying CLL, or it might even be a combination of all the different medications I take, but he also wanted to check my testosterone levels. He told us about one of his patients who had low levels and he was placed on the testosterone patch and he was like a new person. So, at my Monday appointment, I had more blood drawn. Of course, I then did some research on the Web. Although I did find fatigue associated with low levels, it was barely mentioned in most places I looked, but a LOT of other things going on with me did fit. Apparently low levels can be as a result of chemotherapy, and, it can result in loss of strength and muscle tone (yep and yep) and lead to osteoporosis – I already have that. Well, as I was beginning to suspect, my levels are low. I had a message on my phone from the doctor’s office. The message said I should contact my primary care doctor to get on the testosterone replacement patch. Wow, I pray this is an answer. Now, do you think I might start growing hair on the top of my head? Watch, instead I will have to braid long nose and ear hairs. It will start growing everywhere except my head. Ooo, yuck, sorry. Of course, we also aren’t planning to do chemo any time soon. Remember, when I finished up eight rounds last summer, my onc said we were stopping for three months, but we might get six months out of it. Hmm, I am now in my 11th month! I guess God’s timetable is a little different from my oncologist’s timetable.

I leave Sunday afternoon to go to Dallas to conduct a five day training. This will be the last time I conduct this course and I only have one more class to teach before I retire. Strange feeling after 37 years of working as a trainer. Now, if I can just keep from falling asleep when I am in front of the class. Snoring on the part of the instructor always detracts from the presentation.

Now for the “silly break.” I am in charge of the coffee fund for two work sections at the state health department. Yesterday one of the coffee machines died. Here is the announcement I wrote for our coffee fund members:

IN MEMORIUM

February 14, 2007 – June 13, 2007

Sadly, at 8:17 on June 13, 2007, Mr. Black A. Decker expired. Foul play, though initially suspected, was quickly ruled out. Doctors say the cause of death was overwork, an oddity at his place of employment. Although surrounded by health care workers, all efforts to revive him were for naught. Mr. Decker, placed into service on February 14, 2007 and recruited from Wal-Mart, was extremely young for his breed, having lived and served only three months, 29 days. Normal life expectancy for one in his circumstances averages over one year. Autopsy results revealed a lot of rough living in his short life. He was scarred, pitted and unkempt. His internal plumbing showed evidence of hard living and hard water. Although he was listed as an organ donor, only his pot was saved. Viewing was held in room 1004 on June 13, 2007, during normal work hours. He was placed in a custom made box from the Original Manufacturer and placed in a temporary holding can.

Mourning turned to anger when word got out that his demise resulted in July NOT being a free month for fund participants. All respect was lost and Mr. Decker was relegated to the trash heap at the end of the day. An anonymous source remarked, “So much for loyalty and compassion!”

Mr. Decker is survived by his older friend and work companion, Mr. Proctor Silex, who works in the decaf department. Black’s position was quickly filled by a distant cousin of Mr. Silex, also named Proctor Silex, who ironically is black. He was quickly recruited from the local grocery store. The new Mr. Silex is more beautiful than his older cousin and he is equipped with more, though rarely used, options. Mr. Silex’s current caretaker, Mr. J. Wagner who is himself soon retiring (but not expiring) from state service, said, “Long live Proctor. My wish is that he is treated with the dignity and respect he deserves. My dream is that if I should return for a visit even two years from now that I would find Proctor healthy and continuing to dispense liquid caffeine for future state workers. Lord knows they need something to keep them awake and working.” Mr. Wagner arranged a three gun salute as a final tribute to Mr. Decker. “These guys were happy to do it,” said Wagner. “Of course it didn’t hurt that I was able to convince them it was also duck hunting season.”