11/24/04

If I had been keeping up with my diary during the past few months, each title might well have been the same. I have run out of ways to say I’m tired, and I’m tired of being tired. Mostly I’m tired of feeling tired. Working 12-hours a day is taking a toll on me, and there is no relief in sight. Add a malfunctioning thyroid to the mix, and it gets even better. I don’t really understand numbers, but apparently the target number is 4. First test showed the level to be at 14. We increased the syntharoid, waited a month, took another test and it shot up to 24. The latest increase brought the number back down significantly, but I’m sure this has contributed to my fatigue big time.

In addition to these two factors, I know that having Leukemia is also contributing to this feeling. When Open Diary first opened its doors, I started this diary in part to document the progress of this disease that is slowly taking over my body. But it certainly has been a slow process, and in that regard I’m thankful. I now know many others with the same disease whose progress has been much more rapid in comparison. So I learn from them. In CLL terms, we call it W&W. Watch and wait. A couple of weeks ago, out of sheer desperation I searched the web for something . . . . . anything that might help me understand what I can do, who do I turn to, where do I go for help? Does anybody hear me? I’m tired. For the first time ever, I cried because . . . . I’m tired. Christ that sounds so pathetic. Then I found a Leukemia BBS Message Board, and there was one board totally dedicated to Chronic lymphocytic leukemia.

There were a number of topics listed. The first one to catch my eye was simply titled FATIGUE. I found many people in the same predicament as me and they’re all saying the same thing. This fatigue is real, and it’s definitely related to CLL. However, it’s something that oncologists and hematologists don’t want to talk about with you because they have no answer. They suggest talking to our MD’s about it, and after a quick check, our MD’s tell us to talk to our oncologists about it. Quite a system they’ve got there.

My oncologist was out of his office last week when I called, so I talked with his PA. She proceeded to tell me that my hemoglobins were probably better than hers (with a chuckle!) and then said I’d just have to “hunker down.” I thanked her for that big of information and hung up. I found the nearest wall, and beat my head against it. (mentally) But now, somehow just knowing that I’m not alone, not crazy, OR lazy, makes this a little easier to handle.

I have recently started taking a B-complex supplement in hopes of boosting my energy, along with a green tea capsule. I’ve read several articles touting the positive effects of green tea, and there are a few people in the CLL group that have been taking it as well. After 37 days, one man from the group found his white blood count decreased by 60%, and found that his lymph nodes had shrunk significantly. His oncologist was shocked at the initial reductions. Can’t wait until Dec. 8th when his next check is. I don’t delude myself into thinking that this is a cure. They tell us there is no cure, but I also don’t dismiss the powers of herbal medicine. Therefore, I will conduct my own experiment, since 6-years of W&W is getting very old.

I don’t talk about my Leukemia at work. Infrequently it’ll come up in conversation with close friends. But finding this BBS Board is almost like finding home. I’m comfortable and there is nothing we can’t discuss. Now it’s not so much a matter of W&W, but one of interacting.

I have come to OD many times with intentions of making an entry, but for one reason or another it just didn’t happen. Naturally, life goes on and day-to-day I trudge along (with an occasional glide) doing the best I can. I talk with my boys often. I’m committed to helping my uncle on a regular basis. I’m continually comforted by my beloved Maggie and Vince. I have even been found in the company of someone from the male type persuasion some weekends. **gasp** He’s not someone I would consider losing my regained virginity over, but he’s nice and I enjoy his company, as long as it’s not 2 days in a row. *LOL*

So maybe now that I have broken the ice here so to speak, I can get back to making a bit more frequent entries?

Thanks so much to you, my OD friends who have left words of encouragement and concern. Even though I wasn’t writing, you all know (by way of notes) you were in my thoughts.