Update #9 — It Never Ends

So. this is a weird place to be.

I just had a PET scan and it was good. I mean, not perfect. Radiologists aren’t fond of unqualified perfect reports. They’re halfway to lawyer-ville with their CYA language. So while my PET doesn’t indicate active cancer right now, the radiology report mentions something about some septal thickening and not being able to exclude lymphangitic disease. Lovely. Yet, my oncologist says he looked at the scan and spoke with the radiologist and he isn’t concerned. In fact, he even used the R word. Remission. He sent me out of the office with an enthusiastic high-five and an order to keep doing whatever I’m doing.

Remission? I don’t know what that means exactly. Before I was diagnosed I equated the term with “cure,” perhaps slightly less definite than truly cured, but I assumed someone in remission wasn’t actively dealing with their disease. Now I realize … not so much.

  • I take my Xalkori pills twice a day. (If I didn’t, it’d be tantamount to suicide.)
  • I experience various side effects.
  • I have medications for the side effects.
  • Those have side effects, too.
  • I have a million supplements.
  • I research medical treatments and/or connect with the online LC community everyday.
  • One person I know died this week, another is in hospice, several others are in a very tenuous position, having built resistance to their life-saving medication and scrambling to find alternatives. These are people I’ve met in person, people I know, not just names scrolling by on a FB feed. Par for the course in my world these days.
  • Both of my kids broke down in tears today for no good reason, and one very obvious underlying reason. It made me tear up a little myself. This happens a lot.
  • I rarely go more than 7 days without a medical appointment, rarely more than 7 minutes without lung cancer intruding on my thoughts in some form or other.
  • Oh, and then there’s this little detail: It’s pretty much guaranteed that Xalkori will stop working at some point, and there’s no clear post-Xalkori treatment plan yet.

This is remission???

I don’t mean to be ungrateful. I know there are fellow cancer patients out there reading this, thinking, “Really, Lisa? You’re going to bitch about remission?” I know. Xalkori is a miracle drug, and having it work for me as well and as long as it has is a huge blessing. But I confess, this is not what I thought remission would be like. I can’t quite wrap my head around the fact that even on my best days, I can’t get away from LC. If Taylor Swift were writing a song about this, it’d be called “I am never, ever, ever – like, EVER – getting away from LC.” Catchy. I’ve been counseled to try to return to as normal a life as possible, and I am trying. I taught my first cycle class since before I was diagnosed just a couple weeks ago and it felt great. I’ve also resumed a lot more of my daily parenting duties this summer. But in truth, there’s no going back to a “normal life.” Lung cancer will always be riding shot-gun wherever I go, whatever I do, no matter how good my scan looked this particular month.

It’s tempting to wrap up this post with a feel good conclusion — something about how living in this fragile place improves my life or my character. It’s true, there is some benefit. I have a heightened appreciation for good moments, I seize more opportunities to connect and I express love with less hesitancy. That’s wonderful, but I can’t exactly say it’s worth it. You won’t find me endorsing cancer as a great life-enhancer (or pitching lyrics to Taylor Swift), but I’ll keep trying to do my best with the hand I’ve been dealt. Here’s hoping for a really long stretch in this weird place of uncertainty and remission. Maybe I’ll get better at it with practice. I’d certainly like the chance.