Amyloidosis is such a strange disease. Dr. Porter calls it “nasty,” and I guess it is. But the really strange thing about it is that the medical community can’t even decide whether it is cancer or not. Several of you have asked me that very question, and I have had to give the strange but true answer: no one can agree. One doctor says unequivocally that it is cancer. The Mayo Clinic, no less, says it is not cancer. The medical community is decidedly undecided. Another doctor said that an argument can be made both ways, but in the end it is all semantics. Okay, I can see that. The point is that it is treated like cancer, with chemotherapy, so there you go. But I never know what to call it.
The other strange thing about this disease is that no one knows much about it. It is not on any forms, even at the hematologist’s office. So they either have to write it in, or they have to use the code for myeloma, which it is not. Amyloidosis is what is referred to as an “orphan disease." It doesn’t feel good when, as I did, you call up to make an appointment with a nephrologist, and the assistant says: “What is that disease? How do you spell that? It is not on my form. I don’t think she will see you with that disease because it is not kidney related. I don’t know what to put down. I’ll just have to talk to her to see if she will even see you, and then call you back.” As I related this conversation to my laughing sister, I said, not only will the doctor see me, oh yes!, but she will put me on her curriculum vitae. Well, maybe not. And so it goes.
So I and my orphan disease continue to be treated with Velcade. I just started the second course yesterday, with no adverse effects except a bruised hand and some inflamed veins. Dr. Berk will retest my light chains and all that other big time blood stuff at the end of the month to see if we are getting any results. I know one thing: my platelets are low, because I rubbed my eyes that were itching from pollen, and I developed huge bruises on my eyelids. I looked like I broke my nose or something! Awful. And no makeup can really cover it, either. Lesson learned: keep hands away from eyes at all times.
I feel great right now, so I am savoring today, and it is a beautiful day, too. Tomorrow may be a little harder in terms of fatigue, but today I’m feeling fine. I have lots and lots of books to read if I can’t sleep tonight, so that is good. I enjoy reading so much that I almost don’t mind the lack of sleep. Enjoy your today, too.
