Update #11- The Messy Middle (aka Screw the New Normal)

Photo by fatbloke dim

Photo by fatbloke dim

I’ve come to really hate the phrase, “my new normal.” It implies that this is a situation a person can adjust to, as if one can settle in and get comfortable with living with a Stage IV lung cancer diagnosis. I’ve been doing this for almost three years now. This isn’t new anymore, but it will never be normal.

If you’ve been reading my blog for a while, you won’t be surprised that this is my lead in to tell you good news. I’m sunshine-y like that. I just went a record 4 month stretch between scans (longest ever since diagnosis), and my PET came back clean. My brain MRI came back almost clean. The radiologist saw a tiny spot that he’s pretty sure is just an “artifact”* and not a metastasis, but we’ll have to repeat the brain MRI in 2 months rather than 6, just to be cautious. I’m cool with that. I do some of my best meditating when they take away my phone, lock my head into a Hannibal Lecter device and shove me into a tube restricting all movement (I’m serious – brain MRIs for the meditation-impaired should totally be a thing).

A clean PET and almost clean brain MRI is great news, and I am relieved. But, it’s been a really rough few months, not just for me, but also for my family. I know many people hear about a good scan report and assume that the worst is over, that we’ve come through to the other side; but for us, we continue to perpetually brace ourselves for the next catastrophic event. In many ways, the longer I live with this, the harder things get. My family lives with a tremendous amount of uncertainty, and the amount of added stress that brings, sometimes in unexpected, unpredictable ways, is almost impossible to describe to anyone who has no analogous experience. Most days I’ve given up trying. What is the point? It feels bad to cash in the “cancer card” anymore. I’ve already received so much support from so many. I feel guilty when I have to ask for more. Besides, almost three years in, I know everyone is over it. I look normal; I can sense that expectations are back to normal, even if the reality is anything but.

It often seems to me like many people are either ready for the dramatic but short-term worst-case scenario, or alternatively, ready for the miraculous cure celebration … but few people are really up for the (hopefully long) haul through the murky, sometimes good, but often difficult and painful middle.

I feel badly, talking this way. Like I’m constantly negative even when I have good news to report, and people just want to be positive and celebrate the small victories with me. Like I’m a downer that people will run out of patience with. Like I’m cursing my good fortune, not appreciating it enough.

I’m sorry about that. I do appreciate it. I do feel relief to some extent. I just cannot let anyone off the hook, thinking that I’m basically back to “normal.” I’m not. I’m doing well, considering, but I’m still very much in the messy middle and I can’t pretend otherwise.


*An artifact, as I understand it, is some sort of error in the scan. The radiologist thought he might have seen a 2mm spot, and I guess when you’re talking about such small things, it’s hard to tell sometimes – it could be something like the computer misplacing a pixel or two (although 2mm of cancer is millions of cells – so if it’s not an artifact, then we have a problem that could balloon swiftly, hence the rescan in 2 mos.).