It's been exactly one year since I was diagnosed with chordoma.
Blog, did I ever tell you about that day? If I did, I risk repeating myself, but I don't know that I did, so I'll risk it.
I went in to see the world-famous orthopedic surgeon about a week after my biopsy. I was absolutely not expecting any bad news whatsoever. I checked in and the waiting room was full of people post-knee surgeries and teen volleyball players hobbling around on crutches. Stuff like that.
I checked in and they'd said over the phone that I'd get an X-ray before seeing the surgeon. The woman at the desk mentioned nothing about the X-ray, so when I asked about it, she paused and said, "Uh, they decided you didn't need that."
You'd think that would have given me some sort of clue. But, no.
We waited a long time. A long time. Finally we went in and Dr. F, the fellow, was friendly as always, but in hindsight he seemed a little nervous. He wasn't making much eye contact.
Finally, world-famous orthopedist came in and sat down, and dropped the bomb. I knew that chordoma was bad because a friend-of-a-friend neurosurgeon had told us about that possibility months ago. And he didn't pretend it was good.
I started crying a little bit. I wasn't bawling, because I really didn't have any frame of reference to know what I was in for. It was a confused sort of crying. And maybe I was crying because it was one of those moments when I felt I should cry. But, don't get me wrong, it came pretty easily. It wasn't the forced crying I did at my grandmother's funeral when I was a little girl. World-famous orthopedist said, "Why didn't you follow this up sooner?" Well, good question. It was a question I wasn't really prepared to answer at that moment. And later, it was a question I sort of resented. D said he thought Dr. F. may have been holding back tears too.
After hearing I could do surgery or radiation or some combination of the two, we stumbled back out into the waiting area to wait to be immediately set up with a catscan. We were again surrounded by the knee surgeries and the broken feet and the gravity of our situation felt completely out of context in that room.
I asked Dana if I could quit my job. He said yes.
It was a long day; it was a hard day. We told my parents. Curious George was on TV in the background while we talked about it all. I didn't sleep at all that night. I might have prayed.
I remember October 1st last year so vividly and it's sort of amazing when I think of all that has happened in the meantime, because now it doesn't really feel like it happened. My life today isn't dissimilar to how it was on September 30th, 2009. I know that I'm amazingly lucky for that.
I didn't always deal with the past year very gracefully. On October 1st 2009, I shut down in some ways. I didn't see work as being important. Often, it just felt like an annoyance while I was trying to juggle medical treatment, fertility preservation and insurance companies. And my brain had just shut off to some stuff. Now though, I feel accountable again. I feel like I can contribute again. I'm out of that fog and I'm participating again.
In some ways, everything that happened feels like the distant past or a dream. I'm back to my life: the good and the bad and the mundane. That's amazing.
I have to keep following up and I know it's not necessarily over. What's nagging at me now though is that I have to give back for being so lucky. I've been busy and I've let life get in the way of that.
But I have to do it.
