How about we get all three doctors in one room......
Then my friend the Armorer comes in with some lethel medieval weapon.......
And he makes them admit that they are just trying to torment me.
A commenter in one of the posts below suggested I join a list serve for multiple myeloma patients. It's been very interesting. However, these people like everyone else I've met, read, talked to.....had symptoms. People who take this foolish Zometa are experiencing an *improvement*. They have pathalogical fractures. This gives them relief. So of course, the trade-off..........having the flu seems fair.
I don't have any symptoms. So I am just celebrating Ashoura.
Happy New Year! I have been dozing on and off all day while I the SciFi Channel plays their "Twilight Zone" marathon. This could have something to do with my paranoid state.
I am better than I was when my boss had to drive me home from work at 1400. But I am still sore and tired. The chills are gone.
From what I have read they can alter the method of delivery slightly to alleviate this reaction.
But I tell you what.
They get just one more shot at this. If this happens again next month, they can forget about this.
A Happy, Healing New Year to you, Maggie.
ReplyDeleteHave you considered writing a book? Given your talent for writing, I think your story would be healing to you and others.
Hi, this is anonymous with (hopefully) an online name now.
ReplyDeleteSorry you had a reaction to the Zometa -- I have been receiving for almost 4 years (2 years monthly, now every other month -- at my request due to my reading) and I definitely believe it has helped me (of course I have bone involvement -- osteoperosis, including some rib fractures since diagnosis that have healed -- zometa doing its job).
That said, although I write that I have symptoms (pretty much as I would on the acor list), if you met me on the street you wouldn't think there was a thing wrong with me. I know I have low blood counts, tendency to fracture ribs, etc., but it doesn't stop me from doing everything I want to do. Although I confess to having bought yaktrax to help walk my 100 pound dog in the snow so he doesn't pull me face first into a snow bank again ;-)
You say you have no symptoms, but you are on Revlimid and seem to be heading for a stem cell transplant. Something must have you (or your doc) worried. I am assuming you are IGG (from your numbers -- if you were IGA you would be in pretty bad shape). I would be interested in hearing about both your reaction to the rev as well as prep for your SCT.
As far as feeling fuzzy -- definitely the dex! When I was on it, I had to write everything down and even then, I didn't always remember to read what I had written. I could feel my thoughts slipping away.
I definitely understand where your head is at (most of the time) and like your attitude -- keeping your wits about you and standing up for yourself is really important.
Stella - Happy New Year!
ReplyDeleteA book? What? "The Great Big Book of Whining"?
sgttoby - no, I am IGA, it's the number that scares them, nothing else. Truly I have no symptoms and just these numbers. Before the BMB they were sure I was "smouldering". Those numbers surprised everyone.
Trust me, I would know if I was in pain.......and I would tell everyone! I am definitely *not* one to suffer in silence. As far as tolerence and perspective, I wrote a whole post about how I've really never had more than a papercut in my life, nevermind multiple fractures and bone pain.
LOL! That's why we are going to have the Armorer waterboard these doctors to make them admit this isn't real.
Happy New Year to you, also, Maggie! Sorry, I've already started "The Great Big Book of Whining." But whine away as much as you want: it's a healthy pasttime.
ReplyDeleteYou know I admire your strength and temerity. Best to you, also, sgttoby.