Thursday, July 5, 2012

Check Up

Milestones, arbitrary as they may be, are convenient points in time to look back, look forward, look around you. June 30th. That's my milestone and it evenly divides the calendar year, making it an even more opportune time to reflect.

This January, I made some actual New Year's Resolutions for the first time. Among them, I resolved to accept people for who they are, to remember how good my boys are, to keep my anxiety at bay, to keep learning, and to have fun. So, at the halfway point of 2012,in the words of former NYC Mayor Ed Koch, "How am I doing?

For the most part, I think I'm doing pretty well. I find myself being less judgmental (except when surrounded by idiot drivers -- Noah says I shouldn't use that word. He might be right.) and slightly more patient with the boys. (In the interest of full disclosure, Little League coaching season was a little trying at times, at least trying for my patience, but we're in full summer mode now and that helps a lot.)


Returning to Dana-Farber has helped with the learning. I've dove into a lot of new stuff (magazine app development, slideshare, podcasting, blog editing and analytics) and that makes my days fun (certainly more fun than my time at Tri-Moron.) 

As for having fun, well, to quote the alt band Cake, "As soon as you're born, you start dying. So you might as well have a good time." (Admittedly, I've been trying to work a Cake reference in here for some time and when I heard that when I was running the other day -- it's from their song, Sheep Go To Heaven (Goats go to Hell) -- I knew that was it. They're a fun band with sometimes explicit lyrics.)


Keeping anxiety at bay - that's the most challenging resolution from this year's set. I see Dr. LaCasce every 3 months, with CT scans every six months. For the first two cycles, I would anxiously turn the calendar over in my mind, trying to pull the appointment closer and closer. 10 weeks to my next appointment. 9 1/2 weeks left. Now 9.

I wanted to prove that I could make it three months without any progression. And I looked at my next appointment as the next opportunity for someone to tell me that it's a mistake. We screwed up. Go on home.  

I haven't quite resigned myself to the fact that the "we were wrong" news isn't coming but I've settled into my new normal of watch and wait. As my next appointment approaches, time has returned to its fast forward pace. Though I'd be lying to say I have no anxiety. Six months ago, the plan was to see how my bloodwork was in three months, and then scans in six months and maybe talk about treatment plans. Now that talk may be 3 weeks away. And there's some anxiety that goes with that.

I'd been getting pretty comfortable with the thought of treatment as something that may happen someday.  Treatment to me implies a move to the next step, implies disease progression. But it also means we're doing something to attack the disease. And sometimes action -- any action -- seems better than inaction. It's also true that treatment of follicular lymphoma these days doesn't necessarily imply any particular breaking point. Some studies are evaluating the effectiveness of Rituxan (with or without other therpaies) as a "first-line" treatment or as a "maintenance" treatment. 

I like the idea of "maintaining" for a long time -- and I like that people are studying my particular disease. Alhtough I'm not exactly sure what the new fNHL studies mean for me,  that's something about which I will talk to Dr. LaCasce at my next appointment.

My next milestone.  

 --michael