I had a second set of blood tests 10 days after the first. The results were worse. In addition my doctor checked for a vitamin deficiency and I had the lowest result she's ever seen, off the bottom of the lab's scale. We're treating that.
There's no question: I have either chronic lymphocytic leukemia or damage to my bone marrow from a medication I take for auto-immune disorders. Either way, the effect on my body is the same. Defective white cells are accumulating in my body, I don't have enough effective white cells to fight infection and I'm anemic because the bone marrow can't produce enough red cells. As a result of the anemia I feel tired, even when I first get up. I also have some new aches and pains due to the accumulations.
Staging of leukemia is based on lab results and physical findings. One of the commonly used scales runs from 0 to 4; I'm at 3.
This kind of leukemia can be managed but not cured. I've read stories online of patients living 30+ years with it. Getting to that point is not necessarily a pleasant process.
If it's a response to the medication the damage can be reversed. It takes two to three months off the medication; we would have to find another way to treat the auto-immune disorder. It has already caused damage to my eyes three times and my lungs once; I'd rather avoid that.
The referral to a hematologist came through with no problem. My appointment is July 18. Yes, they know that my doctor diagnosed leukemia. I'm on the cancellation list.
This all sounds rather somber, but I haven't lost my sense of humor. There are benefits to being diagnosed with leukemia: now I can take a nap whenever I feel like it without feeling guilty about the housework I'm ignoring. It's a relief to know why I've been so tired and lacking motivation during the longest days of the year. I consider it good news that this type of leukemia is not treated with a bone marrow transplant. And I'm getting in lots of Scripture Study while I rest.
I was planning to move July 20-21; that's off.
I've discontinued mystery shopping except for two clients. One, because they're easy shops, pay well and don't require eating fast food, the other because I'm going to buy gasoline anyway, I might as well get paid for it.
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I started this blog to share my medical status and progress with my friends, but it has grown to include much more. Want just the medical updates? Use the label index, bottom right, to select "CLL." Want details of my recent hospitalization and return home? Check out the new blogs, to the right.
AzLady2's Blog List
Eating crow.... (1/20/09)
How quickly things change! In the three weeks -- to the day! -- since announcing that I was not ready for chemo, I have become very, very sick, been admitted, received chemo, had all sorts of new experiences and am now in the process of getting ready to return home.
When my oncologist told me that I would need to receive my first treatment as an inpatient, she estimated a four to five day stay. When I was admitted she estimated a week. Her senior partner said if I were his patient to expect a month. It has now been eleven days. While the end is not in sight, things are looking much better, and I've begun physical and other therapy that will make the transition easier.
My internet access is made possible by http://www.theblf.org/, a foundation which has made computers available for the use of patients with long term stays. These lightweight notebooks use the hospital wi-fi network. The security is preset, which would not be possible if each patient connected individually. I can keep this with me until I am released or until another patient needs it. (There are three units; they are rotated among the long term patients.) Getting online this afternoon has made a huge difference in my outlook. I am indeed grateful for the opportunity.
Also, it is far easier for me to type than to either speak or write, so I will be using this blog or email for most of my communication.
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Most of you reaching this page know that I was diagnosed with Chronic Lymphocytic Leukemia in June 2007. After six months of relatively stable lab results my numbers started climbing rapidly.
As of 12/30/08 the increase is still accelerating. My doctor seems to believe that one day I'll wake up very, very sick, and treatment will become urgent.
She would have been happy if I started chemo months ago. Not yet.
When my oncologist told me that I would need to receive my first treatment as an inpatient, she estimated a four to five day stay. When I was admitted she estimated a week. Her senior partner said if I were his patient to expect a month. It has now been eleven days. While the end is not in sight, things are looking much better, and I've begun physical and other therapy that will make the transition easier.
My internet access is made possible by http://www.theblf.org/, a foundation which has made computers available for the use of patients with long term stays. These lightweight notebooks use the hospital wi-fi network. The security is preset, which would not be possible if each patient connected individually. I can keep this with me until I am released or until another patient needs it. (There are three units; they are rotated among the long term patients.) Getting online this afternoon has made a huge difference in my outlook. I am indeed grateful for the opportunity.
Also, it is far easier for me to type than to either speak or write, so I will be using this blog or email for most of my communication.
-------------------------------------
Most of you reaching this page know that I was diagnosed with Chronic Lymphocytic Leukemia in June 2007. After six months of relatively stable lab results my numbers started climbing rapidly.
As of 12/30/08 the increase is still accelerating. My doctor seems to believe that one day I'll wake up very, very sick, and treatment will become urgent.
She would have been happy if I started chemo months ago. Not yet.
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