It's a good thing I wrote this blog. I found myself taking a trip down Memory Lane, and realizing how much I've forgotten. For instance, I thought I'd been on steroids for a year. Trolling through the Plog indicates I started them in February of this year. It's (the Plog) scattered with unremembered details that made me smile, mist up and realize what a service writing this ejournal has been to me.
Funny, I was going to announce that the blog would be closed for renovation until further notice. I've grown tired of detailing drug woes, doctor appointments and eating issues. But then, that's the point, no?
No doctor appointments this week. No new meds. Jeffersonville, where I plan to spend mid-week, has no scale. I'll be free to do fun things like unpack and search for lost items. My cell phone doesn't work there and there's no internet. It'll be just me, Turbo and fresh (cold) air. I'll post when I get back.
Class dismissed.
Sunday, October 31, 2010
Thursday, October 14, 2010
The Exjaded New Yorker
I saw my oncologist yesterday and she confirmed that my blood counts are fine but my liver enzymes are not. This is due mostly to the high amount of iron stored in my liver, thanks to the transfusions I received over the past 4 years. She's putting me on a drug called Exjade, and if I can tolerate it ( i.e., it doesn't wreak too much havoc on my kidneys), I should be able to unload most of the iron within 2 to 8 months. This will not only help my liver, but will hopefully impact my chronic gvh and lower my cholesterol.
The other exciting news is that I'm reducing the prednisone from 30 mg/day to 20. I hope I notice a difference in sleepability. With luck, I'll be weaned in a month or so. Goodbye chipmunk cheeks.
It turns out that my doctor in Boston knew about the high iron levels but decided not to treat me or tell me. At first, this made me angry. My new doctor explained that I couldn't be treated for it back then because they were waiting to see if I survived the transplant and didn't relapse. Those scenarios would've made the iron overload a moot point. That's the silver lining in all this: I'm here, just weighted down with excess iron.
The other exciting news is that I'm reducing the prednisone from 30 mg/day to 20. I hope I notice a difference in sleepability. With luck, I'll be weaned in a month or so. Goodbye chipmunk cheeks.
It turns out that my doctor in Boston knew about the high iron levels but decided not to treat me or tell me. At first, this made me angry. My new doctor explained that I couldn't be treated for it back then because they were waiting to see if I survived the transplant and didn't relapse. Those scenarios would've made the iron overload a moot point. That's the silver lining in all this: I'm here, just weighted down with excess iron.
Tuesday, October 12, 2010
The Cheese Stands Alone
The good news is, I don't have leukemia or diabetes. What I have is complicated, according to my new internist whom I saw yesterday for a physical.
My health is like one of those children's songs with multi-layered parts. Think: Farmer in the Dell. I'm the chesse, and I stand alone.
Those not interested in medical jargon should skip the next paragraph, which will be most of you.
In a nutshell, I do have very high cholesterol, for which I can't take drugs or change my diet. The true reason is iron overload in the liver. I got that from the transfusions needed to boost my red cells over the last four years. Iron from the transfusions is stored in the liver. I've had about 100 of them, so my liver is heavy with it. The other reason for for my bad liver is chronic graft versus host disease. I thought it was just in my skin, but I was wrong.
I can't treat the high cholesterol until I address the iron and liver issues. See above. The iron will have to be drained out of me, which should help my liver function. Then I have to be patient until the GVH diminishes. When my liver straightens out, I can take Lipitor, if I still need to.
The Farmer in th Dell takes a wife who takes a dog who takes a cat who takes a mouse who takes the cheese. The cheese stands alone.
Hi ho the derrio.
That would be me.
My health is like one of those children's songs with multi-layered parts. Think: Farmer in the Dell. I'm the chesse, and I stand alone.
Those not interested in medical jargon should skip the next paragraph, which will be most of you.
In a nutshell, I do have very high cholesterol, for which I can't take drugs or change my diet. The true reason is iron overload in the liver. I got that from the transfusions needed to boost my red cells over the last four years. Iron from the transfusions is stored in the liver. I've had about 100 of them, so my liver is heavy with it. The other reason for for my bad liver is chronic graft versus host disease. I thought it was just in my skin, but I was wrong.
I can't treat the high cholesterol until I address the iron and liver issues. See above. The iron will have to be drained out of me, which should help my liver function. Then I have to be patient until the GVH diminishes. When my liver straightens out, I can take Lipitor, if I still need to.
The Farmer in th Dell takes a wife who takes a dog who takes a cat who takes a mouse who takes the cheese. The cheese stands alone.
Hi ho the derrio.
That would be me.
Friday, October 8, 2010
No News
I'm fine. I had my cholesterol re-screened last week and no news is good news. I haven't spoken to my new internist but he felt the 564 reading was a bad test. I'm two weeks into my prednisone taper and my skin is looking good. Still can't sleep much at night, but I feel I'm eating less.
Speaking of not sleeping well, I woke up last night at 2:30 am and started worrying that I'd lost touch with people due to my laptop crashing with all the addresses trapped inside. If you have not heard from me via email in a while, this is why. I'm not trying to lose you. If you don't have my email and want to contact me, do it through my gmail account which you can get from this blog. Or leave a comment at the end of this post and I will respond.
I discovered a journal I was keeping back at the beginning of my leukemia days in March 2006. It has four entries; they are painful to read. I decided to start writing in the journal again, beginning with the fact that I'm still alive over four and a half years later.
Connie, you were so right about Hope.
Speaking of not sleeping well, I woke up last night at 2:30 am and started worrying that I'd lost touch with people due to my laptop crashing with all the addresses trapped inside. If you have not heard from me via email in a while, this is why. I'm not trying to lose you. If you don't have my email and want to contact me, do it through my gmail account which you can get from this blog. Or leave a comment at the end of this post and I will respond.
I discovered a journal I was keeping back at the beginning of my leukemia days in March 2006. It has four entries; they are painful to read. I decided to start writing in the journal again, beginning with the fact that I'm still alive over four and a half years later.
Connie, you were so right about Hope.
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