Tuesday, December 30, 2008



Well, folks, it's done. Over. Kaput. Finis. In the end, I didn't have to do the last cycle after all. I have been showing symptoms of bladder damage these past few cycles, and so my doctor decided that the risk of causing permanent damage outweighed any marginal benefit from finishing this last cycle. So when we got the lab results during my appointment yesterday, she said, "You know what? You're done." And that was it. I was a bit in shock, though I kind of suspected she might say this, given the symptoms I'd been having.

So, after more than a year of crap crap crap, I'm finally done, and right before the new year (I know, it's really just an arbitrary date, but I'll take it). I'll still have regular checkups for a while, and the longer I don't have disease the better the prognosis (although there's not enough data to actually give a number for prognosis). My doc says that they usually start counting from the time that you are disease-free, and for me she says this would probably be after my radiation treatment. I don't know that it really means that much, but by that rationale, I already have almost a year disease-free under my belt. Once I get to year five I can breathe much more easily.

For now, it's time to live for real again. . . WOOOOOOOOOHOOOOOOOOOOO!!!!!!!!!!

Thursday, December 18, 2008

The final countdown

One more to go!

I'm kind of in shock. This year has gone by so quickly, and now that I'm facing my last chemo treatment, I don't really know how to feel. Round 16 came and went last week, with the usual crappiness feeling for 2-2.5 days, and now I'm back up and running. I had a chat with my adviser last week about what it will take for me to defend and finish up. I've started the beginnings of thinking about what I'm going to do after I graduate. It's all very strange. This year, with all the starts and stops and interruptions, I've tried to get stuff done and get myself to feel productive, but I also definitely took it easy when I wanted to and for the most part prioritized fun, family, and friends. Still, the prospect of working hard for the final push is actually kind of appealing - having full energy to tackle my research and other things will be exciting.

My last cycle is on the 29th, so a just a couple days to recover from that and I'm home free! Aside from bimonthly checkups and semi-annual scans, I get to return to a normal-ish life. Better yet, I get to figure out what that means. It's pretty exciting, though a little daunting. And of course there's the heavy cloud of uncertainty - did it work? Was the triumvirate of surgery/chemo/radiation enough to thwart the bizarre rhabdo-beast? I have no idea. No one else does either. There's just not much data for young adults and this disease. In general, including kids, I've seen upwards of 80% cure rates posted. That's promising at least, but not entirely comforting.

Knowing more information isn't necessarily better, though. This year four of my good friends' moms have gotten breast cancer (one was a recurrence). One day, one of my research mentors pointed down the hall of offices in our building at the doors of all his colleagues whose families had been touched by breast cancer. There's tons of data on breast cancer, but all that does is give you more certain uncertainty. Once you're staged and the treatment is done, you may know exactly what chances you have, but that's rarely reassuring for the individual. There's always the lingering question - which group will I fall into? The never-have-to-face-this-again group, or the . . . other one? My mom, who is a statistician, is always skeptical of data. Even if there's a .0001% chance of something happening, if you are in that group, it's 100% your problem. Basically, it just sucks, no matter what.

It could be worse

During sophomore year of high school, I went through a really angsty phase where I would get super moody, sulk around, and play "Everybody Hurts" by REM incessantly (I know some of my friends are probably reading this and groaning with rolled eyes at the memory). Of course I still have moods now, but I like to think that they're, um, more sophisticated. In any case, people would always say, "I don't like that song - it's depressing." But to me, it's actually quite the opposite. To know that everyone suffers to some extent gives me some comfort - not in a sadistic, schaudenfraude sense, mind you, but in the sense that it means people live with pain all the time, and yet they find the strength and courage to move past it.

As a result of this mode of thinking, I often try to count to myself the numerous ways in which my situation could be worse. I try not to be too outlandish about it, but sometimes it does go there. I mean, I found the disease relatively early, so that's a plus. It hadn't spread to my bladder, so I get to pee in the normal way still. Definitely a plus. The little nodules in my lungs appear to not be metastasis after all, I'm lucky to be in a place where I can get top-notch medical care, etc., etc. I suppose this could seem depressing to some, but sometimes looking at all the bad things that could have happened makes the good things (or even just the lack of bad things) all the sweeter.

Anyhow, for now, I'm looking forward to a new, fresh year. . .