I got my monthly lab results today. I've completed 2 cycles of Treanda the Sequel. A cycle is Tuesday, Friday, Tuesday, Friday, followed by two weeks off. In chemo terms, I'm doing chemo on days 1, 4, 8 and 11. That's a lot. I'm wrapping up week one off of chemo. Next week is the second week off and then I start up again April 22. April 22 will be day 1 of cycle 3. Got it?
Anyhow, my lab results after two cycles are super. We saw a nice big drop in my myeloma numbers. The Treanda still works. And that was the goal when we took me off of maintenance. We/I wanted to go back to what worked and use it till it lost it's effectiveness. My goal is save the new drugs for later. It was a bit of a risk but not a huge risk. It seems to be working out. I'll see Berenson Monday. He can review the numbers. My guess is that we'll do one more cycle of treanda and then go back to maintenance.
It hit me this week that when I first did treanda, I was critical. I was hardly working and feeling like crap. This time, I've been working full time and even though I had a minor relapse, I was feeling good. But honestly, this heavy duty chemo kicks my ass. Physically tired. My legs have felt like massive weights. My emotions and mental state have been iffy at best. I've hated just about everything and everyone for the past 2 or 3 weeks. I think yesterday I finally snapped out of this toxic doldrums. Feeling good. Mentally more stable. And now I have one more week of good feeling. Yeehaw!!
This is just my experience of course....but cancer/myeloma is a funny thing, I want no sympathy, no pity and I don't even bring up my cancer in the course of normal activities. The other day I had the most horrible meeting at one of the port's container terminals. The terminal managers are huge. I mean absolutely obese. They are aggressive, abrasive and use their weight to intimidate people. In my whole working life, I've never experienced anything like this. The other day, a particularly hot day, they were on the attack. Me and my coworkers were absolutely blasted by these guys. In my mind, I was telling them to go fuck themselves. But in reality I kept calm and tried my best to reason with them. We all tried, to no avail. Mind you this was a day that my mental state was not at its best. This was a day that my body ached all over. We were outside and it was hot. I wanted to tell these guys to shut the fuck up, that I'm dealing with the after effects of chemo and was in no mood for their crap. I didn't. I want no special attention, But once in a while I'd like some acknowledgement of the crap I'm dealing with.
Like my fellow myeloma patients, I bust my ass to keep everything together and moving forward. I bust my ass to be positive, to be professional, to keep my life as normal as possible. What choice do we have? And while I want no attention, there are times, I'd like someone to say, Damn Matt, you are kicking ass. It's a fine line between what I want to hear and what I don't want hear. Perhaps its superficial lip service that I don't want. Sincerity is what I want.
Lately, I've really been missing the old Matt. The Matt that traveled almost every month..visiting friends when they weren't visiting me. I miss the old Matt that had energy to go have a beer and watch the final four with friends. The old Matt who was carefree and worry free. He's gone. But I think I need to work on recapturing some of that spirit. Yes, I am kicking myeloma's ass. Yes, I'm keeping things together. Yes, I am a better person now than I was 3 years ago. But I wish there was a way to merge the two Matts. I'd like to merge the fun, easy going Matt with the new Matt who is focused and honest and compassionate. I love that feature in Excel....the merge cells features. It gives you such a better cell. You can center, make into a title or header or eliminate wrapped text. Pretty nice feature.
I'll be alright. But the gray areas between what I want and what I need and what I miss and what I don't miss are huge. A lot of gray right about now. I'll work through it though.
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...