A few posts ago I mentioned that I'd had a bone density test, and I'm not at all pleased about the result. The scan indicated that I'd had significant bone density loss since my last test - thank you again steroids! You're the gift that just keeps on giving.
I dropped a few days ago to 4 mg and it's pretty hard to stay awake. I was supposed to go into Toronto to have a check-up on my pacemaker this morning, but there was no way that I would have been capable of manoevering myself through the train and subway system today - just that dopey. That's been rescheduled a few weeks out when I hope to be far more coherent again. I'm sure I'll be ready for another nap before this post is finished!
I'm getting frustrated with my lack of progression on a number of work and personal projects, I don't understand why I can't just will myself to stay awake, will myself to feel better, will myself to feel less pain. I'm working very hard on my "mind over matter" approach to my illness but there are times I just have to admit that wanting to feel better isn't enough.
Tuesday, February 23, 2010
Wednesday, February 3, 2010
As long as it's not the "C" word
Not quite as tired as I have been the last week, and getting quite a bit of work done today (not the "running after small children taking their picture" kind of work that I would prefer to be doing, it's image retouching on my computer but work nonetheless). Hurray!
I had an appt to have a bone density scan done at a local hospital a few weeks ago, and a comment that the technician offhandedly offered continues to bother me a bit. I was having the scan done to see if the steroids have caused bone density loss, and she asked if my medical status had changed since my last scan two years ago. I briefly updated her on Erdheim-Chester Disease, and mentioned that she might see a bone lesion on my femur on the scan - and not to be alarmed, I'm aware of it.
The technician asked if it was cancer. I said no, ECD isn't officially classified as cancer - it's usually described as an auto-immune illness yet often treated by oncologists. She told me that I should consider myself very lucky that it wasn't cancer, and thank goodness I could look forward to a long life unlike many cancer patients. Hello? Were you listening to me?
I've gotten this reaction a few times. As long as it isn't cancer. How fortunate for you!
Frankly, a fair number of cancers have a much better prognosis than ECD. And most have a course of treatment to follow. ECD doesn't have this yet. Some positive development with some drugs, but it appears to be mostly trials and investigative attempts at this time. Nothing close to a cure (and I'll be happy to correct this should one of the many researchers working on this illness let me know about any new developments!) :-)
When my orthopaedic oncologist first saw my scans last year, his guess was that the lesion was 1st stage bone cancer. He felt confident that if this were the case it could be successfully and quickly treated. I can't tell you how often in the last year I've wished that this had been the diagnosis.
I had an appt to have a bone density scan done at a local hospital a few weeks ago, and a comment that the technician offhandedly offered continues to bother me a bit. I was having the scan done to see if the steroids have caused bone density loss, and she asked if my medical status had changed since my last scan two years ago. I briefly updated her on Erdheim-Chester Disease, and mentioned that she might see a bone lesion on my femur on the scan - and not to be alarmed, I'm aware of it.
The technician asked if it was cancer. I said no, ECD isn't officially classified as cancer - it's usually described as an auto-immune illness yet often treated by oncologists. She told me that I should consider myself very lucky that it wasn't cancer, and thank goodness I could look forward to a long life unlike many cancer patients. Hello? Were you listening to me?
I've gotten this reaction a few times. As long as it isn't cancer. How fortunate for you!
Frankly, a fair number of cancers have a much better prognosis than ECD. And most have a course of treatment to follow. ECD doesn't have this yet. Some positive development with some drugs, but it appears to be mostly trials and investigative attempts at this time. Nothing close to a cure (and I'll be happy to correct this should one of the many researchers working on this illness let me know about any new developments!) :-)
When my orthopaedic oncologist first saw my scans last year, his guess was that the lesion was 1st stage bone cancer. He felt confident that if this were the case it could be successfully and quickly treated. I can't tell you how often in the last year I've wished that this had been the diagnosis.
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