I've really been neglecting this blog!
The week after my last post I finally flew to New York. The following week I extended my stay by a week.
I've had good days and bad days. I've been more conscious of including the daily practices that helped me bring my numbers down in May. I'm still tired, and I'm having intermittent sinus and digestive problems. But enough of that!
I spent a lot of time with my great-nephew last Wednesday. He had left a homework project until the last day, so we worked on it together. He entered his narrative on my sister's computer while I found and cropped some photos on mine. He called his mom to ask her to find two particular photos and have them ready when he got home. I think it came out pretty well!
I've been spending more time in a particular sub-forum of Scrap Share. It's a smaller group, very close-knit, very supportive and caring. We've all be dealing with adversity of one kind or another, lately: job loss, illness, bereavement, moving. It's been really good for me.
It's raining in New York. Not only that...the temperature has dropped. It's 55F right now, at 11am. We call that winter!
I'm excited about a new computer tool, but I'll put that in its own post.
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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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