Limbo

Limbo

Brian’s treatment ended Monday. I’m sure y’all expected to hear from one of us about how excited we are about closing the chemoradiation chapter, popping the champagne.

Honestly, that’s not where we are. His fight didn’t just abruptly end, side effects disappear. As I write, he’s taking a nap in the bedroom. 

When healthy, the man doesn’t do naps. Not a nap guy. While I see progress in his health, it’s very slow. He sits up more. He did an evening pickup of Ella from percussion practice this week. He’s going to bed a bit later. Small steps. 

Limbo, I’d say that’s where we are. The worst of the treatment over, but we don’t know when this will end. This isn’t some project on a timetable. We really don’t know where we are. We see Brian getting a bit stronger, but we also see his skin scabbing over, front and back, where the radiation targeted. Continuing extreme fatigue. Uncertainty regarding when he’ll get back to the office, especially since it’s a large campus so there’s a lot of walking, not to mention sick people milling around since it’s a public facility. We know Brian’s immune system is still compromised, but not to what extent, and don’t have plans to test it. 

Sometime in May Brian will have PET and brain scans so we can see how effective treatment worked/if anything new is found. Like so much of this journey, inflammation takes it sweet time to subside, so new scans can’t be taken until 90 days after treatment. We have no idea what would happen if there was lingering cancer and no reason to ask. We’re taking life day by day. 

Immunotherapy will begin soon, with fewer, if any, side effects anticipated, but there’s no guarantee there either. 

I may sound negative, but this is where we are. You can’t plot it on a map. It’s all wait and see. We’ve made the best choices we could in doctors and have had luxuries others going through this don’t have, like loads of sick time, jobs that have been extremely supportive, friends who’ve come out of the woodwork to send helpful gifts and check on us. 

How lucky we are to have you on this journey with us.

I’ve mentioned a number of times that we’re in our first year of marriage. Our first Christmas while we were dating I bought a Christmas ornament and had it personalized with our names. It’s a man and woman on a rollercoaster (yes, it’s very cheesy). I told Brian when we started dating to buckle in, because for reasons I’ve had little control over, I tend to lead quite a wild ride of a life. 2019 lived up to that expectation in many ways. While we did get married some random day I don’t remember during our lunch breaks (which, in retrospect, was a very lucky spontaneous choice that’s simplified the cancer journey), we never got our footing or a routine developed as a couple. I’ve learned a lot about Whaley, because significant illness can bring up the unexpected, on the fly. I suppose some things you only learn in dire circumstances, when stress and bandwidth are tested, when health is failing. 

This is the For Better or Worse, In Sickness and In Health portion of the program. Just wasn’t expecting it so soon.

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