Dexamethasone. Dex to us myeloma patients. It's a powerful steroid that works in concert with our other drugs to make the whole concoction do its job. Dex typically induces a day or two of insomnia and unchecked energy. It's followed by a crash. A couple days of tiredness.
To be honest, I don't mind the dex high. At times I actually like it. The first night of insomnia I use to my benefit. I work out. I read. I stay up late watching tv. I send long emails to people. I keep Leslie and Gracie awake. I update my quicken. I make plans. I look at cars, bikes, vacation spots, shoes, all kinds of stuff on the internet.
The first day, after the night of insomnia, is unchecked energy and isn't so bad either. I go to work. I'm highly productive. My brain is working double time. I'm funnier and smarter on my dex day. At least, I think I am. I do a lot of clapping and jumping on dex day. I encourage team efforts. Anything seems possible. Myeloma seems like a little hiccup at worst on dex day. Not bad, right?
This is my dex love.
But I also get moody right from the get go with dex. I have little patience and am annoyed if things don't go my way. Oh wait, maybe I'm like that already. I'm sure some people would say I've always been like that. I think I mentioned that I warn co-workers not to annoy me, given the dex driven short fuse. Despite the energy and the high, dex does make me want to crawl into a corner somewhere and avoid all contact with other people.
Two days after my treatment, the dex wears off and there is a crash. It's a physical and mental crash. Physically, I'm just plain old tired. This past Sunday I laid on the couch all day watching tv. I didn't even have energy or desire to take Gracie for a walk. I force myself to move around a bit, but I'd prefer not to.
Mentally, the crash for me is more difficult. As I said, the mental challenge of myeloma is a tough one. So many thoughts run through my head. The dex crash amplifies all my negative thoughts. Woe is me is heightened. I feel like a loser for not embracing life. I think about how much the cancer has consumed me and I have no ability to have a normal conversation about anything other than cancer. Yesterday was a particularly bad crash day. My mind was fucked up. We had a lunch for my retiring boss. I sat with some folks who I like but haven't seen too much lately. I had nothing to say. I just sat there, thinking every word that came out of my mouth was pathetic. I had meetings, I had issues to solve...and I just couldn't get in to them. It all felt hopeless and pointless. I went home after work and laid down in the middle of the living room floor, eyes closed. Leslie got me moving.
I mentioned my achy nut yesterday. It's fine now and really isn't anything to worry about. I know I can delete any post I write at any time. But I tell myself, once I upload a post it stays. So last night, I came home and was kicking myself for mentioning my nut. Why would I do that? Who wants to hear about my nut? Why would I want to open myself to questions about my left nut? But I posted it and it had to stay.
This is my dex hate. Self loathing, self pity, hopelessness run rampant at times. See why I hate it?
But then there is the high. That wonderful high. I love the energy I get for two days. I love feeling invincible and on top of the world. It's a roller coaster for sure.
And that is my dex story. I'm not even getting into potential issues associated with long term steroid use.
We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409. Fresh off the pr...