A sober reminder of how horrible this disease is. She was quite a fighter -- living with this for 12 years. She outlasted the odds available to her at that time. But it's also a sobering reminder of how one can only control this disease for so long.
Here's hoping that in celebrating her life and honoring her passing with dignity, some attention can be focused on this disease and new treatments developed, hopefully leading to a cure that's a bit less intensive than the one hopefully offered through tandem transplants.
For now, I remain humbled by my good fortune in finding a doctor and a protocol in whom and in which I believe, respectively. And I remain thankful for you good people, and for the favorable impact my therapy has had on me thus far.
Saturday, March 26, 2011
Tuesday, March 15, 2011
Thought I'd let you know I'm not sick! :)
Sorry to have been so busy!!!
I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients. And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.
Generally, everything is good. I went through a couple of weeks where the dex was bothering me...it wasn't even that I had (TMI alert) constipation...it was as though the entire digestive system shut down. I felt like I had food in my stomach for three days. It was pretty awful. But those have abated the last couple of weeks...in fact this week I have felt positively peachy -- no GI issues at all. I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.
Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex. However, everything is steady as she goes.
Including the weight, sadly. I dropped about 20 pounds but have been holding fairly steady. Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food. I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through. We shall see.
Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!
I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients. And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.
Generally, everything is good. I went through a couple of weeks where the dex was bothering me...it wasn't even that I had (TMI alert) constipation...it was as though the entire digestive system shut down. I felt like I had food in my stomach for three days. It was pretty awful. But those have abated the last couple of weeks...in fact this week I have felt positively peachy -- no GI issues at all. I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.
Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex. However, everything is steady as she goes.
Including the weight, sadly. I dropped about 20 pounds but have been holding fairly steady. Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food. I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through. We shall see.
Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!
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